LIFE IS THREE SWEET

Artificial Pancreas Excitement!

2012-01-30T11:41:00.002-05:00

For the first time ever this week, in a rare moment, Kailyn voiced how she hated Type 1 Diabetes and how she wanted it all to be gone. She did not feel well and it was one of many complaints, but she has never said she hated Type 1 Diabetes so blatantly. I told her my usual, "That is just how things are and you have to deal with it".(We were told to never say I'm sorry or to coddle her about it) She knows that, but still wishes it would go away. I was online and I noticed someone with a child that has Type 1 Diabetes doing a trial in Boston for the Artificial Pancreas. Kailyn and I have talked about it, but more like something that would be a dream. The FDA is dragging their feet letting these trials happen and getting funding is getting harder and harder. Well, I showed her the pictures of what was going on and she got VERY excited. She wants to participate in the trials so badly, but is too young. Even just eating for a few days without pricking her fingers sounds like heaven. So, I took a video of her talking about the prospect of this happening. It made me realize how much Type 1 Diabetes consumes every day, every hour, every minute of her life and how much it really alters how her daily life is.

Please excuse my video taking and editing skills. lol

Sometimes my kids crack me up!!

2012-01-30T11:16:00.001-05:00

Sam, "Why do we give our toys and clothes to Burger King?" I was completely baffled about what he was talking about. Then, I remembered that the drive thru is near the back entrance to Good Will. So, for years, Sam has thought we were bringing our items for charity to Burger King.

"SAY CHEESE"

2012-01-27T23:53:00.006-05:00

I was taking a picture of Keira with a basket on her head. If you have not heard, she LOVES to put buckets, baskets, pots and pans on her head. Today it was a meatloaf pan. I think it is her attempt to dress because she can't do any self dressing at this point, although, she has started to put our shoes on.
Well, I picked up my camera and pointed it at her and she said, "Say Cheese". Echolalia, but I will take it! The seizure medicine makes her seem more with it and she is babbling up a storm and even copying our words sometimes. I can't wait until next week when she starts getting her ABA therapy.

"Say Cheese!"

Yes, I am up too late.

2012-01-23T00:53:00.001-05:00

Hubby is working an overnight shift and Kailyn is hinting that she is "sick". We laid low today, but she still complained that she did not feel well at bedtime and beyond. Blood sugars were high, but no ketones. We managed to get all of them bathed, homework done and in bed by 8pm after an awesome Patriots game. Super Bowl Bound again!!! Sam can't wait to start playing tackle football and thinks his first team to play on will be the Patriots. I admire his dreams. Won't crush them quite yet.
ABA will start even more this week. Keira FINALLY got into The Reach School in home ABA program for children under 3. It is going to be like having a Mother's helper 2.5 hours 4 days a week. I can't leave, yet I am not responsible for entertaining/educating her. We can also go on outings with our ABA instructor. There is a double edge sword to having this, but we HAVE to do this for Keira. It is HER future that lays in the balance. The earlier they can reach into that brain and retrain those Neurons and Synapses the better. Best part is that they don't care how my house looks. However, if they are here, I can take advantage of cleaning/cooking instead of following her around as she destroys. ;) Then, when the big kids are home, I can put more time into them. I am looking forward to seeing progress with Keira and getting a bit more organized.

Holiday Card Letters

2011-12-21T02:10:00.005-05:00

Yeah, so I do not do them. Never have. I feel like I would be lying if I told everyone about all the wonderful things about life and left out the icky parts that consume us a ginormous part of the time. Yes, I am very blessed to have 3 beautiful children, a loving husband and a home over our head, but there are lots of little things that "add up" that seem to be overwhelming. If I were to write a letter it would go something like this:

Greetings from the R family:

This year has been an interesting roller coaster ride to say the least.(as usual for the last 4 years) We feel very blessed to have each other and to be alive! At this time of the year in Maine you would expect snow, but this year we got it for Halloween and Thanksgiving. I guess God is trying to shake things up a little. Now on to what everyone is up to.

S: He is still working at the same job for almost 12 years. He also has a second job to keep up with our health care expenses. He almost left, but then his boss decided he wants to throw people with mental illness and developmental disabilities out on the streets so we decided it was wise for him to keep that job for now. In his spare time..................oh wait, there is no spare time. He works 70-80 hours a week at 2 jobs so we can keep a roof over our heads. When he gets a chance he helps out with the kids and is very good at trash duty every Tuesday morning. He is quite grumpy because of the awake overnight shifts, but manages to stay awake on Sundays so he can watch the Patriots play. We managed to both make it to Sam's gingerbread making party today.

Me: Hot mess. I stay up way too late so I can get some quiet time. That is when I watch my inappropriate trashy tv that little eyes should not see. Right now I consider my job to be case manager and/or the executive advocate for my kids. I have not had to go into the school to advocate for Kailyn yet, but get called or texts multiple times a day to deal with Type 1 Diabetes issues sometimes. No one scares/intimidates me anymore. I once was scared of speaking my voice, but now I say everything on my mind and make sure that things are being done right. If things get bad enough there is always home schooling. I have gone into school for Sam a few times and even tracked down the Principal to set things straight. I deal with juggling Dr. appts. including, but not limited to; Developmental Pediatricians, Regular Pediatricians, Pediatric Surgeons, Pediatric GI Doctors, Pediatric Endocrinologists, Pediatric Neurologists, Pediatric Epileptimologists, Pediatric Pulmonologists , Social Workers, Physical Therapists, Speech Therapists, Developmental Therapists and Occupational Therapists. I volunteer at the school when I can, joined the schools PIE group (PTA), bring my kids to soccer, volleyball, band, kids clubs, basketball, dance class etc.... Luckily we live close to everything so the mileage is not bad if any at all. (I can walk to the kids school) Grammie is also very willing to help with the car pooling. I don't like to bring Keira out too much because I fear her getting something that might set off seizures. In my spare time (cough cough) I sit on the couch and think about all the things I should be doing, but get overwhelmed so I do nothing at all. I play games on my phone, chat on twitter or the phone. Forget about cleaning...laundry....cooking...working out.... Oh, I almost forgot. I also had pneumonia this summer and suffered my second PE. Thankfully I did not die. 1 in 3 people do. Luckily I have been spared twice and now I am on blood thinners for life because of a genetic blood clotting disorder. I get to go to my MD and get my levels checked every 1-2 weeks. I hope to start working on getting my pre-pregnancy body back soon!

Kailyn: She is doing really well this year. Her anxiety levels are way down. She has joined Band and does Tumbling, Hip Hop and Ballet classes. She also enjoyed Cheerleading for the Gorham Grizzlies. She is doing well socially. Seems to have a great group of friends even though most of her old friends went to new schools. We have had a hard time keeping her Diabetes under control, but managed to get her back down to levels so that she won't go blind by the age of 20. (one of many complications) I worry daily about her. I have been hearing a lot of stories about children dying from T1D lately. I should not read them, but can't help myself. I want to know why so I can prevent it from happening to K. She is a very happy and helpful girl when her blood sugars are not high or low and is growing into such a beautiful girl.

Sam: He is the one I worry the least about. Sam loves to try every sport thrown at him. Soccer, Volleyball, Football, Basketball. He particularly LOVES football and wants to play tackle football next year. He still has High Functioning Autism, but is managing to make his way in this world. He is doing things well beyond we ever hoped or dreamed when we were given his diagnosis 4 years ago. (the first devastating blow to our family that would start a domino effect for 4 years and counting.) He was not talking at 3 and was diagnosed with Classic Autism at the time. You would never know it unless you spent a good amount of time with him. Academically he is catching up. He is at grade level in Math and does not get Title 1 support for that anymore and is at grade level for Reading, but still receives support due to his anxiety. Especially around test taking. He still thrives on routine and has his issues, but nothing that we can not deal with.

Keira: Our little trouble maker. I think I say "get down" 300 times a day right now. A year ago now I wondered if she would ever walk. She is a completely different child than then, when she was diagnosed with Failure to Thrive. Now she is climbing up a storm. I wish we could afford a jungle gym for the basement. She was diagnosed with Autism Spectrum Disorder and we are waiting to see if we can get the ABA we want for her and know that she needs. She is not learning to talk and still has her g-tube. We had to put her back on seizure medication because the Myoclonic seizures came back after over a year of being gone. We are not sure if it is due to trying to wean the G-tube feeds so those are back again. I don't care if she has it forever as long as she can talk and function. When she was having the seizures she was not uttering a word. (Usually gibber jabbering) Our hope is for her to be where Sam is in four years. Early Intervention is the key and I am advocating for it tirelessly. Besides being a trouble maker she is a ton of fun. Loves to run around nakey and hang with her brother and sister. Dancing and singing are major favorite past times. Twinkle Twinkle Little Star and Itsy Bitsy Spider being the top two. Reading and looking at books are fun too!!

So there you have it. As bad as it sounds, I guess things could be/get worse? I do have woe is me days, (getting far and few between). I think I am getting used to our new normal of craziness. I have given up the dreams of a perfect ideal family, because there is no such thing. I don't care if my house is messy. (I don't like dirty though) I don't care about gourmet meals. I care about my children and husband. If every ones needs are met at the end of the day then it is a good day. THAT is actually a perfect day.

Hope you have a Merry Christmas and A Happy New Year!!! ;)

Disclaimer: This letter is totally sarcastic, but almost reality. At least ours. There is much more to our life, but like all good sticky sweet la la la our life is wonderful letters, I had to keep this a bit short. lol

Sam's "A Time For Love" Kindergarten concert

2011-02-10T15:15:00.011-05:00

Sam was very excited about his "musical" as he called it. He has watched his sister do these things for 4 years and now he was finally getting a turn. He kept saying that only Mom's and Dad's can come and he expected us to both be there. Keira came with us and did great. It was much different watching him than Kailyn. She always looks at us with smiles and waves. He was all business and barely looked our way. He was taking in the scenery. We are both very proud of his tambourine duet and his ability to sing all of the songs. The entire pm Kindergarten did a great job.

There's my Mommy, Daddy and Keira!

All of them got to wave to us before they started to sing, dance
and play instruments.

Singing away!

Sam playing his tambourine duet.

Do you think Sam Loves Me?

2011-02-07T18:40:00.001-05:00

He wrote (scribbled) this song for me. I think it is cute and will be using it as blackmail when he gets older. ;)

WANTED: Trader Joe's Whoopie Pie Thief!!!

2011-02-06T18:03:00.001-05:00

Approximately 15 months old, 23.4 pounds, 2 1/2 feet tall, light brown curly hair, big blue eyes and kissable cheeks.

Last seen with shirt off (trying to hide the evidence). In white onsie (with whoopie pie remnants) and blue jeans. Gangster gear.

Don't let the big blue eyes and curls fool you.

She will fiercely and swiftly crawl right over you to get to whatever she wants.

She also enjoys white bread with butter, Trader Joe's O's, juicy juice apple juice and 3 bolused 8 oz cans of pediasure a day. (Down from 4)

Additional pictures:

Don't let her giggles and smiles fool you either. It's all fun and games when you steal your brother's whoopie pie!

Call America's Most Wanted Babies if you see this Whoopie Pie thief!!

I'm back

2011-02-06T17:18:00.000-05:00

I've been on hiatus
Husband and kids with icky sickness that lasted for 3 days and then went on to the next one. The only two that had it at the same time were Sam and Keira. Kailyn's turn was scary because it was her first time throwing up since Type 1 Diabetes. Illnesses like this can easily lead to hospital trips. Thankfully the Diabetes Center worked with us all day until she was in the clear. The Zofran did not work so it was a pretty powerful virus.
I thought I was in the clear, but then I got it 2 weeks ago and yesterday was the first day that I felt semi normal again. No energy what so ever a night in the ER and a potential Blood Clot because of dehydration and laying around too much. I may be on blood thinners for the rest of my life. I will find out when Maine Med gets their act together.
Today is Super Bowl Sunday. No big plans. I was a plumber today. I fixed the toilet lever and the bathtub faucet in the upstairs bathroom. It only took two trips to the hardware store. Yesterday I did our taxes. It feels good to be productive again.

Glasses and Strawberries

2011-01-18T15:04:00.005-05:00

Kailyn got out to get her new reading glasses today. She was really nervous and still is. I have never had glasses so I am not sure what the nerves are about?

I think she looks cute.

Keira sucking on a strawberry. Trying to hydrate her

Just because she is so darn cute.

2011-01-15T23:00:00.001-05:00

I happened to run into a pair of new, returned, double runner ice skates at Target before Christmas. They were size 10 and $5.23 on clearance. I want both my niece and nephew to learn to love to skate like my kids are. I called Nanie to see if I should make the purchase and she confirmed that Kyleigh was a 10 and go ahead. This was at 10pm, well past my sisters bedtime. We have an outside rink about a mile from us. It is a fun and free activity in Maine. Today was Kyleigh's first day at it and she did great. She seemed to have fun. She really wanted to wear a pretty ice skating dress and do twirls and tricks, but begrudgingly put on the get up that Aunt Didi put her in.(She would have ferociously protested with her Mom) She had been over to play before we went and got some clothing wet. She happily hopped in the car and the rest is history. Kyleigh is now an ice skater :)

Skating into her mother's arms like a princess

Working on it.

The Ice Skating Gang- Minus Nancy Kerrigan (aka Kelly)

ALL DONE

Next Up! Graham!! :)

Something I thought I might never see.

2011-01-15T22:27:00.002-05:00

Three years and four months ago Sam was diagnosed with Moderate Autism. He could barely talk, play or socialize. He also threw tantrums about routines and small things, lined things up and had stims. We knew there was hope, but did not know if he would respond to ABA therapy. Thoughts of him living with us plagued our minds back then. He still throws the tantrums for us and is on the high end of the spectrum, but is thriving in school. Tonight I put him in his room because of poor behavior and had to sit by the door to make sure he did not come out. He is beyond tired lately and routine changes are not helping. He kept pushing out these notes. One he tried to sound out "I am sorry", but this one just melted my heart. (SamLooMomm) "Sam Love Momma". This is his very first sentence. It may be one long one, but he did it. This was the only area on his report card that he did not meet the standard at all. Now I need to send this to his teacher and his reading teacher so they grade him accordingly ;)

Ear Piercing: Take two

2011-01-09T16:54:00.001-05:00

Kailyn got her ears pierced for the second time today. She did it before, but took them out 7 months after to put a different pair in and that pair infected one of her ears. They said for sensitive ears too!! That ear closed up. She apparently has sensitive ears and I told her she can take the new ones out when she is ten. She did not have any problems until she took them out.

It was a big treat this time though because her and her cousin Kyleigh schemed together to get it done. My sister did not think Kyleigh would do it, but both girls got it done with barely flinching. The ear piercing lady really had it easy this time. We have gone in to kids screaming bloody murder. Keira will get them when she asks for them too, but since she can't talk, nor cares for earrings (unless she can pull them off of other people) that will be a while. Kailyn got them when she was 6, Kyleigh will be 5 in May. Kailyn is so much older now compared to then. Here are pictures of them. You are not allowed to take pictures while they are getting them done. They both got April, which is a (fake) diamond.

Kailyn went first.

All done. Pro.

So Excited!

So Adorable.

Ice skating 2011 Fun Fun Fun

2011-01-09T16:27:00.002-05:00

Sam is a wild man. He tries to go as fast as he can, but can't stop. So he falls to stop or crashes into snowbanks. Kailyn has come a long way too. Very confident on the ice. She falls, but brushes it off and gets up again. Seth, really needs his skates sharpened and so do I. My feet were frozen by the end of two hours so I need to do something about that too. They LOVE it though. I mean really really love it. Just like I did when I was a kid, but I had a pond in my backyard. No need to drive and parents were no where to be seen. Grammie is setting them up with hockey sticks and we have two pucks. Sam watches the big boys intently and you can tell he longs to get in on the pick up hockey games. (You need to learn how to stop first Sam) His friend Patrick joined us. Seth and the kids tried the day before and were unsuccessful. I did not go with them. Kailyn fell to a Blood Glucose level of 46 and while Seth was tending to her Sam fell and then wet himself. Saturday was a MUCH more successful day. The baby stayed with her grandparents safe and warm in their house until we got back. Seth did have to do a run to go and feed her via the G-tube so the kids could stay longer.

See, she is happy. She claimed she would not smile.

Sam smiling while Dad skates the other way

Wild Man

Not smiling because she claims to be too cool.

What NOT to say to the parent of a Type 1 Diabetic

2011-01-05T22:27:00.000-05:00

Keira does not like to eat yogurt

2011-01-03T12:54:00.001-05:00

BUT, she had a blast playing with it at lunch time today. Rubbing it in her hair, on the high chair etc.. We are giving her food at each meal to "play with" in hopes that some lands in her stomach. The first step in trying to wean a child off of a G-Tube is to let them see how fun food is. (At least this is what the Feeding team and Speech Therapist say) I can't decide if I should wash her hair every time she eats or only when we leave the house? She flattened it down pretty well with the yogurt today. Had a bath 3 hours earlier. It has been over a month since we have seen a seizure, except for when she had a fever of 103.9. She is also medication free. She had an Upper GI and they gave the go ahead to start the feeding process. We were told it is going to take a long time to get her off the tube, but it was well worth it to get her back to a healthy 14 month old. She continues to learn new things every day. Language is her strength. Eating and lower body physical movement, not so much. We have everyone we can working on it though. Two speech therapists and a feeding team.
Here she is after playing with yogurt and flattening her big head of hair down. If you listen closely you can hear her saying all done at the end.

Keira's words (First post of the new year)

2011-01-02T21:49:00.005-05:00

ah doh (all done)
hi
momma
dadda
it da (what's that)
grrr (growling at the dog)
itsy
ider (spider)
ruff ruff (dog)
clicks her mouth to gain attention
Mmm mmm (vroom vroom)
Duck
quack
doggy

She also shakes her hand "no no", tries to imitate the movements of itsy bitsy spider, gives the best kisses on demand, claps yay and tries to dance when we are playing the wii while sitting. :) (among other things I have probably forgotten) ;)

Last Funniest Sentence of the Year.

2010-12-31T21:20:00.005-05:00

Unphased, "Sorry, don't worry, it's just insulin."-my sister. This was in the movie theatre, after I mistakenly shot it at a man via the pen. Three seats over into the other row. He was in front of my sister. If Kailyn's blood sugar levels are high we have to bolus her with an insulin pen instead of using her insulin pump. Apparently, I could not see that the cap was still on and cranked it way up hoping to get some out. Kailyn figured out that the cap was on. We do a test shot into the air or carpet etc.. It's like water and not harmful to other people. I opened it, pressed it down and it shot out before I could even think. The guy thankfully laughed it off, but I wonder if he told anyone he was shot with insulin today??? ;)

The movie Tangled was adorable. All the kids liked it,(the adults did too) even though there were some scary parts for Kyleigh and Graham (they wanted to go home during those parts). I reminded Kyleigh that it was pretend and by the time I did that, the scary part was over. Getting everyone settled before the movie was a little less than a nightmare, but we did it. All four of our kids went to see a movie together for the first time as part of their New Years celebration. We partied it up as a family of five tonight. We watched the kids fireworks in Boston at 6:45pm, while eating Burger King and Sebago Brewing take out. My kids are safely tucked in bed and asleep as of 9pm and I am sure Katie's kids are too.

Happy New Year!!

"I wonder if 2011 will be boring?"

2010-12-31T20:02:00.003-05:00

These were the words out of my husbands mouth last night. I paused for a minute and wondered what boring meant and thought to myself: "Oh, he meant no major anythings!" My answer: "If we look at the last 3 years the percentages are not on our side. Lets hope for normal, whatever that is?"

Bad major things the last three years (............. means I'm not telling you! lol)

Autism Diagnosis
Type 1 Diabetes Diagnosis
......................
......................
Gall bladder surgery
Unplanned Pregnancy (Such a blessing that I could not imagine life without)
.......................
.......................
----------------
Birth of our third and last child, which led to....
Pulmonary Embolism and DVT. Good chance of dying.
Recovery of the above PE and DVT (So much pain)
Infantile Epilepsy
Trips to Boston
Failure to Thrive
G-Tube Surgery
Weight Gain (Me)

Good things:

My husband: He is healthy (as far as I know) continues to be able to provide for us, is a great father and my rock. Things get rough, but we always make it through it.

My children: Sam has made improvements by leaps and bounds. No one would know he was diagnosed with plain Moderate Autism 3 years ago. His report card was a pleasant surprise!! We are getting use to life with Type 1 Diabetes. We would rather Kailyn not to have to deal with this, but she is thriving in and out of school. Keira: The fact that she was born!! I can not imagine life without her. She is so much fun, an easy baby besides the whole epilepsy thing, and just pure joy!! Just as recently as 3 weeks ago was the last time we saw a seizure and she is now in the THRIVING category. Gaining new skills every day. We got the all clear after an upper GI yesterday to get her therapy to try and get rid of the G-Tube. We hope to see continued Physical development.

My Extended Family: We could not have made it through the above without them. We love them very much and are thankful for EVERYTHING that they have done for us.

Here's to a non-chaotic and Happy New Year!!! :)

-Kristen

Wii live the life

2010-12-29T01:22:00.001-05:00

Been a while. I have been doing the Christmas, Eating, Playing, Sorting/Cleaning and Sleeping thing. I crashed the day after Christmas and made it out the door tonight in search of Wii gear and new winter boots at LL Bean. After I remembered that my own car is not working. Totally forgot it stopped working on Christmas Day. (Who does that? Forgets that their car does not work???) Guess I better get on that.

I went to BJ's first and as I was paying, promptly realized I forgot my Debit card. Par for course for me. Do you see a trend here? I don't get upset or annoyed at these things because this is part of my daily life. I lose my keys, wallet, phone etc.. on a daily basis and know that everything will work out at some point. I went back home after getting nothing done at BJ's, got it and went to Walmart instead to get more Wii remotes and nunchucks since we are now a Wii owning family. The kids are just wild about it and are the PERFECT ages. They are happy with just the Wii Sports Resort games. I can't imagine what they are going to do when they figure out there are hundreds more. Just Dance 2 comes in the mail tomorrow and I personally can't wait for that. (The reason another remote HAD to be purchased) Now we just need rechargeable batteries and a charger because they have been going through a set a day. I normally would not allow so much gaming time, but it is Christmas and pretty darn cold out there. If I make Kailyn go out when it is too cold she won't go out for the rest of the winter. Sam on the other hand, went outside with just his boots on and his jacket unzipped. Had to wrangle him back inside before he got blown away.

Keira is doing well. I hesitate to say that she has not had a seizure in 3 weeks. The last time I said that she had them the next day, but I will say it again because she had them with a fever of 103.9. Not sure why they have stopped (hopefully they really were benign), but we did slowly titrate her off of the meds. She is not on anything as of 3 days ago. We hate the thought of the major heavy duty meds in her system and will do Ketogenic if it happens again. She has had MAJOR improvements. She is not the same child she was just a little over 2 months ago. That child was frail and basically just stayed in one place. She now moves really fast and gets into everything. Loves trying to get in on what Kailyn and Sam are doing. She is still behind in gross motor and feeding areas, but her receptive and expressive language is right where it should be and the other two are coming along. She still gets all of her nutrition from the feeding tube. We have to see a GI, Nutritionist, Feeding Team and have an upper GI done. Then the Feeding team and her Speech Therapist will help her learn how to eat and drink again. She would be happy with us just feeding her through the tube for the rest of her life though. ;) We go to the GI tomorrow and the Upper GI on Thursday. We have never seen a GI in Maine, ironically. Only in Boston when they said she needed the feeding tube STAT. Not sure what the GI will do except take our $20 co payment and refer us to the Nutritionist, who will then see us, take our $20 co payment and refer us to the feeding team. Thank goodness we don't pay for the Speech Therapy and Physical Therapy.(They are both awesome BTW)

Kailyn is doing well too. I have no idea where her numbers are at, but they seem to be around the range they should be. I also have NO idea when her next appointment is. I think it is around now. I should probably call about that. It is very hard to manage the medical needs of two children. I try my best, but right now I feel like Kailyn is getting the short end of the stick. There is only so much you can think about in one day and changing her insert and making sure she is not high or low all the time is all I can handle. There is a lot to Type 1 Diabetes management care that people do not realize. Luckily, she is old enough to do a lot on her own. We just need to double check, but she can't adjust the pump. Only the Diabetes center and I can do that.

Sam is Sam. Happy go lucky unless it's bedtime or he is extremely overtired. (Then watch out) He is confused about this whole vacation thing, but does not seem to mind. Numbers and days are hard for him to grasp. His strong point is definitely reading. He wrote me a lovely note that said. Sam Loves Mommy Santa! :) We plan to go to a movie and out to eat one day and will put the Wii to good use the rest of vaca. Daddy only works 2 days this week and since my car does not work he really is not working a full day tomorrow. He has to take us to the GI. Not sure what we are doing New Years, but I prefer to not make plans because they never work out. lol Just winging it!! :)

A weekend of B's ;)

2010-12-19T23:43:00.001-05:00

We were supposed to have Kyleigh and Graham Bam over on Friday night to Babysit, while their parents went to my sisters company Christmas party, But Kyleigh was Burping (what both Graham now calls and Kailyn ironically did call throwing up) So instead, Kailyn and I went to the Christmas Tree Shop and did some "just for fun shopping" I am already done with my shopping. She Bought Both her Brother and Sister presents with her $15 Budget, which I thought was Beautiful and very thoughtful of her. Makes a Mother very proud.

We found this Boxing pen Santa to be a Bit disturbing!! But, it made for a good laugh for the Both of us.

The next day was very Busy!

First we went to Sam's first Basketball practice with a team ever. 8:00 am. The whole family went. Kailyn chased and played with our friend Kelly's son Jack with some Balls and Keira was very excited about the Balls too. She loves them and was not happy she could not get her hands on one. Sam had a lot of fun, made a Basket and keeps asking when he gets to go back. Not for a couple of weeks.

Brownies was at 11am. I went with Kailyn. The troop went and donated food to the food pantry and then went and made pine cone ornaments with Birdseed for the Birds. She hung them on real our tree on the deck and made even more today. She had a Blast and is ecstatic that she finally made it into a troop.

Birthday Party with Sam was the next thing on the agenda. It was for his friend Sam L (in his class) at a swimming place from 4-6pm. He had a Blast and was only Bummed that he had to wear a life jacket. They give them a swimming test at the Beginning and he swam the length of the pool, but stopped when he was swimming on his way Back. (on his Back) I don't think he would have stopped if he had known. All the other Boys had to wear one so it was not that Big of a deal, however, it is not over their heads. I personally can't stand the place, But some people seem to love it.

Once we got home Sam immediately went to Bed. He was exhausted. I was too. I went to Bed and Basically did not get up until 3:30pm today. My sinuses were filled up and my head hurt horribly. I took Claritin D and now I feel fine. Can someone Be allergic to a fake Christmas tree? lol

This week will Be Busy. Keira has Speech and Physical Therapy tomorrow. We have a family Holiday party at Kailyn's School on Tuesday, Keira's first GI MD appointment in Maine on Wednesday and the rest of our time will be spent trying to keep our kids calm so we can salvage any sanity we have left Before Santa comes.

Keira saying spider, trying hand movements, saying all done and momma! Huge Developments!!

2010-12-14T01:36:00.006-05:00

I am holding my breath that this is the beginning of more to come!!! Notice her saying spider, momma and all done. It does not have to be said correctly for it to be counted as a word. She also tries to do the hand movements and screams at me when I stop usually, but this was not caught on the video. :) This all took place around 1am because her teeth are hurting. You can see her put her fingers in her mouth too.

PS: No seizures still except for when she was sick with a very high fever!! Starting Stage 1 baby food, but she refuses to drink using any sort of cup or bottle.

Some Serious Christmas Preparations

2010-12-04T22:04:00.006-05:00

Our house is decorated. Thanks to the kids. I have decided it is a kid themed Christmas and they did the decorating. (with a little direction from me ;) )We have chains linked all the way around the living room, in the playroom, Sam's room and Kailyn/Keira's room. Paintings hung in different areas too. The kids went with their grandparents to get the 'real' tree that we put on our porch and decorate for the birds today. We would have done the traditional Gingerbread house, but I decided to quit that tradition. It is way too hard to count the carbs and little fingers like to steal the candy off of the house at random times. That was part of the fun (at least in my opinion). Last year was a mess with blood sugars out of control. We will move back to sugar cookies (probably the precut kind) ;)
I have all the presents, stocking stuffers, wrapping paper and the cards are made. Now we just need to wrap the presents, send those card and for Christmas to come. I am usually doing all of this at the last minute, but I want to be prepared this year. "Expect the unexpected" Kailyn was shocked I was letting them put the tree up right after Thanksgiving. She said, "I did not think you would really say yes!" lol A lot of my time when the kids are in school goes into therapy and Doctors appointments for Keira so it will be a nice load lifted off my shoulders when everything is done. Hopefully, Grammie will make us one of her beautiful wreaths again this year ;)
What do I want for Christmas? Tranquility for Seth and I. Joy for my children.

On a hunch

2010-12-04T21:43:00.003-05:00

Call it mother's intuition or just a gut feeling. I decided that the Zonisamide was not helping Keira's seizures. Her seizures are triggered by sleep (among other things) and the Z med is not only known for making kids sleepy, but for making them have more trouble thinking/concentrating. I got Seth on board and we slowly titrated her down to zero. Her last dose of Z was on Tuesday and the last seizure we saw was on Tuesday so far. I am knocking on some serious cyber wood. I have been hesitant to say anything only to have them return the next day. BUT, I DO want to say something!! She has had a few random days without seizures, but none were consecutive!! This is 4 days without any noticable seizure activity.
We have seen a few other developments and go to the Neurologist on Monday. She is only on Depakene 3x's a day now. Still a hard core drug for her little body, but she has made great strides since her surgery on October 20. The most notable being her chubby little cheeks.

Hard at work the day before Thanksgiving

2010-11-24T08:50:00.003-05:00

Making things for Christmas and working on standing too. Sam is still asleep because it is a day off from school and he was up late, but I am sure that by the time I am done writing this post he will be awake.
Keira worked on standing this am. She hates applying pressure to her legs, but did pretty well and is good at falling down on to her bottom by herself. It feels as though her legs are not strong enough to hold her body weight now. lol Here she is doing it, having fun, sort of.... lol

Today 64% for weight and 96% for height

5 weeks ago today 7% for weight and 96% for height

Having Fun

That was hard work Mom

I guess the gross motor changes after a surgery and it takes a while to get back to where you were in some areas. Strength being a big deal. She not only has to heal from the surgery, but deal with all the weight she has put on. She is doing really well though. Went right down for an early morning nap. ;)

Here the kids are working hard on Christmas Crafts, with Kailyn the Directress. They got right down to business after Kailyn ate breakfast and Sam has now made an appearance. My niece Kyleigh came to join in on the fun. (i.e. help entertain my kids) :) She does this often. The benefits of your cousin living a 1/2 mile away.

Kailyn the Ham and Sam the Kook

2010-11-22T19:23:00.001-05:00

Kailyn is doing well too. She FINALLY got into brownies and knows some kids in her troop. She is so excited. She happily goes off to school on most days and calls me from her cell phone when she gets to Grammie and Grandpa's (I can see her) and then when she is at school. I can see the school from my backyard. :) The other day we had a rainbow near our yard. She swore she walked right through it, saw an array of colors and a fleck of green that could have been a leprechaun. She thought that was the luck that got her into brownies. I went with it. ;) Hey, you NEVER know. (except for the part I got the call before the rainbow) Here is a picture of said Rainbow.

Kailyn likes to be stylish and here she is hamming it up with her new Christmas clothing

Her insulin pump sort of Pops out of her tummy too. ;)

Sam is a Kook as I like to say it. I can't show the picture because he is in his underwear (he is very sensitive to this sort of thing), but he was trying to hide from us in order to avoid going to bed and had to think quick because I was coming fast. He was in the playroom and put a big green ball, bigger than his head, in front of him. He was laughing because he knew we could see him. Picture a 6 year old boy, with just dark blue underwear on, holding up a green ball in front of his head so his parents can't find him. He gave us a good laugh :)

Sam loves Kindercamp and School still. He whines the whole morning the two days that he does not go to Kindercamp in the morning and asks several times, "How many more minutes till I go to school?". Me, "120". Sam, "Ahhh, that is toooo many!!!" :) Apparently Keira and I bore him. ;) Oh well, next year he will be gone all day and will probably be begging me to NOT go to school. :)

Professionals helping make Keira thrive

2010-11-22T18:51:00.002-05:00

1. Her Pediatrician
2. Speech Therapist
3. Physical Therapist
4. Pediatric Neurologist
5. Pediatric Epileptologist
5. Pediatric Surgeon
6. Pediatric GI MD
7. Occupational Therapist
8. Pediatric Geneticist
9. Pediatric Nutritionist
10. Visiting Nurse

Keira=Priceless

So how are things?

2010-11-22T18:43:00.001-05:00

Pretty good in my opinion.
Of course things are not perfect. As in, 3 kids without any issues, just worrying about getting homework done and making it to soccer practice on time. But, as perfect as it can get for all we have been through in the last 7 months.
Four weeks ago we were scared to death Keira was headed on a downward spiral. Losing skills and slipping away. Now she is going full speed ahead. Crawling on all fours very fast, pulling up onto things on her own, playing social games with us and getting into things she should not. We actually have to baby proof now because she is not just sitting here like a fragile baby doll. She still has a way to go, but she is moving forward instead of backwards. I could go on with all the nitty gritty details of things she can do now that she could not a mere four weeks ago. The seizures are not under control, but that will be a work in progress and having the right amount of sleep keeps them down. The biggest change that people notice is the meat she has put on her bones. Over 4 pounds by now. Chunky cheeks and still a smile that melts my heart.

If you look closely you can see the feeding tube cord coming out of her leg. That is what is fattening her up. She smells like Vanilla Pediasure. ;)

I am NOT crafty by any means

2010-11-22T18:27:00.000-05:00

BUT, I have happened to be able to put together signs of each of my kids name. It involved wood, permanent paint and a glue gun. Pretty scary. Two were done before the kids were born (9 and 6 years ago) and one, well...... 13 months after she was born. lol I wanted Keira's to look exactly like the others so she did not feel shafted and could not complain at some point. I could not find the A in her name at my AC Moore, but Grammie was able to get more than one at the one in Augusta. I really wanted hers to be the same for some strange reason?? I did it and now they need to be hung up. Can I borrow a stud finder Grandpa? ;) Kailyn is bummed that hers is not the color of Keira's, but the rule is that I get to pick out the color before they can talk and purple is my favorite color. I figure if I make Keira's fuchsia then she will like purple. A Mom can try ;)

It Is World Diabetes Day

2010-11-14T23:25:00.001-05:00

We celebrated it like any other day. I did tie two ribbons at the end of our drive way to show support for both Diabetes and Epilepsy Awareness months. Having Diabetes in our life is normal now so we really don't think about it unless a crisis arises. Kailyn is quite good at counting carbs, understanding the importance of the nutrition and using her pump. We have to double check and do the inserting of the needle, but she is well on her way to independence. Do we wish we did not have to deal with Type 1 Diabetes? Yes, but we don't think about it all the time. It is only really scary when she is sick, low and has ketones. THEN we have to think about it A LOT. Right now she is not, so we live life like getting her finger pricked and having insulin is normal.
We ARE thankful for the invention of insulin less than 100 years ago. Without that, we would not have our amazing little girl in our life.

What do you get when you give a baby with an undiagnosed form of Epilepsy

2010-11-13T23:36:00.001-05:00

and having trouble eating a G-tube?
Developmental milestones!!!!!
Keira is:
Crawling
Giving and getting
Pulling up to her knees
throwing balls and any other object she can get her hands on.
Is REALLY strong. Can lift small tables etc..
Says Momma, Dada and Hi on occasion
Gives high fives again
Gives incredible cave kisses
Claps on occasion and waves high on occasion (still working on consistency)
among other thing I probably have not remembered.

She still can't eat and is having seizures (sometimes none and a lot today because she is sick with croup), but the development makes us feel so much better!

Here she is outside playing with her brother and sister today.

One of those normal beautiful fall days (at least for us)

2010-11-13T23:06:00.004-05:00

When the kids play outside while your Mother in law (Thanks Grammie) rakes the leaves in your yard because your husband is on call and was up all night. He did help, but looked like he was going to fall over doing so.

When you are still staining the deck because it is a project you did not realize would take so long. I have one side to go and it WILL get done tomorrow. Along with the raking as long as Seth does not get called out again.

When your baby crawls around in the leaves with delight. Exploring the world of fall that she has not gotten to do before because she just started to crawl and pull up to her knees on to things. This all started once she got the G-Tube.

When your kids talk your head off non stop about what they are going to name their horse when they get one. Blue Jeans like Hannah Montana (of course) I did not listen to all of the details. I probably owe her a horse knowing Kailyn. She works out deals with me and I am not fully listening all the time. She Does. Not. Stop. Talking.

When you send your 12 month old inside to get her 100 calorie G-Tube feed at 3 so she does not lose energy and she protests. (a good thing)

When you send your 8 year old Type 1 Diabetic in to get her Insulin Pump infusion set changed because it has been 2 days and it has to be done every two days.

When it is overly warm for fall and you feel good doing the mundane task of staining the deck in the sun because you can drown the sounds of the world out (whining kids) with your ipod music.

When your husband makes Trader Joe's pizza for dinner and it tastes soooo good. Especially the Buffalo chicken one. I need to put that on the must buy every time list. ;)

Houston, Keira has gained 2 pounds!!!

2010-11-05T00:18:00.002-04:00

This is in just a little over 2 weeks. She is tolerating her feeds well through the G-tube, has more energy and got her cute little cheeks back. Three days after her operation she started to crawl on all fours for the first time. She moved slowly, but she was doing it. :) (and still is) She is still moving slowly, but the physical therapist we met with said that it usually takes over a month for them to get back up to speed again. She was pretty impressed with how well Keira was doing when she met with us at our house on Monday.

Keira is getting wrap around care. This means that she is getting services from the Visiting Nurses and they all come to our home. She has a regular nurse to help with the G-tube aspects, a Physical Therapist that will come 2-4 times a month, a Speech Therapist to come every week and OT every week. They are going to try and close the gap and get her back to where she should be. I never thought that she would get this type of care so quickly. I am thrilled to say the least. The even bigger bonus is that I really liked the PT and Speech Therapist we have met already. The Speech Therapist lives in my hometown of York. She is also still being seen by the Pediatric Surgeon, A Nutritionist, A GI Doctor, her Neurologist in Maine, Epilepsy Specialist in Boston and her Primary care Doctor.

She has already regained some of the skills she lost too and was showing off for the Speech and PT ladies. I am not sure if the Medication, Epilepsy or lack of nutrition is causing the delays or a combination of all three, but the nutrition part has already made a HUGE difference. Hopefully, they will find a cause for the eating seizures or a medication that works. Finding medication that works seems to be a crap shoot unless you know what the cause of the seizures are and even if you know the cause they don't work 100% all the time.

Her seizures had definitely reduced and we had 2 days where we did not see any at all. Then we started to see them creep up again. I called the Neurologist because you generally give Depakene 3 times a day and the Neurologist on call prescribed it for 2 times a day (not a Ped Neuro) when we had our Depakote debacle. Our Neuro said to do it three times and this has reduced them again. She only has them when overtired now. This is why nap time is crucial. The times we saw no seizure activity was when she had great nap days.

We go to Boston again on November 15th to see a Pediatric Geneticist. We have no idea what will happen, but I assume it will involve more blood being drawn. The Epileptologist from Children's insisted we do the Genetics in Boston. He was fine with the G-tube surgery being here, but the Genetics piece was not to be done in Maine. lol

I put my Google PhD on hold and will be concentrating on the progress that Keira makes instead of worrying about what she may or may not have. I will also be working with her on all the homework we are given from the different specialists. What I do know now, is that what she is going through is extremely rare and no one has come across a case like it before. That may be why I can't find anything about it on the net. She is getting an Upper GI to see what amount of liquid she can take before having a seizure so that the Speech Therapists will know what they can work with and what is going on when she is swallowing. I know what those results will be already. ;)

She is STILL a really easy going baby and is my easiest child bar far. (can't talk back ;) ). However, getting her ready for the day and for bed at night takes one hour each time (and she does not eat food). We have to change her feeding tube bags, fill them with her Pediasure, give medication (It's tricky), change the gauze, prime the machine, put tape around the medicine port so it does not leak, thread her tube through her clothing so she can not get to it among other things I am sure I have forgotten. Seth is finally doing this on his own. (He won't do things until he has to, so I have left the house at night a few times) Hopefully, we can get into some sort of groove to cut our time down.

The site around her G-tube may be infected so we are off to the Surgeon's office tomorrow. He said that there was a 100% chance that we would be back and he was right. It is red and sore around the site and some yellow puss is coming out (yuck, I know) I try to keep it as clean as possible, but these things can't be prevented and are very common.

This is a picture of exactly what Keira's G-tube looks like, but it is not Keira. That tube puts the food right into her belly. Eventually we should be able to bolus right into the button instead.

I am sure there is more that I am forgetting to tell everyone, but this is where we are at for now. We wish we did not have to go through the process, but we try not to think about it and cherish the precious little baby we have and all the accomplishments she is making again.

These are pictures of Keira

Almost done with her 6-12 month clothing because of her height, not her weight. :)

Got Hair?? Look at her chubby legs :)

Kailyn and Sam

2010-11-04T22:14:00.003-04:00

Kailyn loves Cheerleading, Scrapbooking club, Chorus, Her brother and Sister, Crafting/Painting and Playing with friends.

Sam loves Soccer, Watching TV, Kindercamp, Raking Leaves (doing outside work), Riding his Bike, Doing projects that Kailyn does and Playing with friends.

They both LOVE playing with their cousins and had a blast with them on Halloween.

They had an iTouch that lasted a week because I upgraded to an iPhone 4......until Sam spilled water on it. Kailyn's School is collecting old iPhones in order to compete for a grant, so I will send it there tomorrow. This is why my children can not own electronics. They kill them with water. It's ok with me that they are the only kids without computers, video games, Wii's or DSL's. Save's money :)

Kailyn asked for an American Girl again this Christmas that she will not be getting. She wants them every year at Christmas and then never plays with them all year. I need to take us off of the mailing list. The catalog this year is exquisite and makes me want to get a just like me doll too. ;)

Sam wants a remote control car as usual. He gets one every year and ends up destroying it in one way or another. Both want some sort of Spy car they have seen on TV. It amazes me at how early Christmas gets every year. I went into Target and Old Navy today and both were decked out for the Holidays already. So, Christmas now lasts for 2 months out of the year. Wonder if they will have Christmas and Halloween candy side by side next year?

In my opinion, both kids are doing great socially and academically at school. They have academic "standards" in Gorham that they want the kids to meet, but the standards keep getting higher every year. If Sam had gone to Kindergarten when Kailyn did he would be meeting the standards for Reading right now. He struggles more with Math. If he went when I went to school he would not be getting Title 1 services. Kindergarten is the new first grade. I don't get letter flash cards sent home to work with him, we get sight words sent home to memorize. He also reads a ton of books to me. I am pretty proud and happy with how far he has come. He absolutely LOVES school and gets very annoyed on the days that he does not go to Kindercamp in the morning. (He is pm Kindergarten) I work with him for about an hour on the two days he does not go. During the entire 3 hours he has to wait to go to school he asks, "how many more minutes till I go to school?" at least 20 times. Wonder how long that will last.;) His teacher said at his conference that he was a "Joy" to have in class. I wish they behaved as well at home as at school. ;)

Kailyn is a Math whiz. She does great with Reading. She loves the Box Car children books and Ramona right now. She has trouble with Spelling. I think I had the same words she has in third grade in high school. lol Seth and I asked her tonight if she ever learned what vowels were and she said "huh?" We said, "You know, A, E, I, O, U and Y?" She just looked at us with a quizzical look on her face. SO, I am going to go old school on her and teach her vowels like we were taught. It's worth a shot. :)

We have to decorate a family Turkey Poster for Sam's Kindergarten class this weekend and hopefully will get to relax. I want to finish painting the deck and I am sure Seth will be begging me to rake the leaves when the Patriots game is not on. ;)

Here are pictures of the kids doing things they love.

"Where's the Beep?"

2010-10-28T23:04:00.001-04:00

We now have two pumps in the family. An insulin pump and a feeding tube pump. Both beep at various times and sometimes even at the same time. I find myself saying quite often, "Is that you or Keira beeping Kailyn?" If Kailyn beeps, it could be because she is doing various things with her pump. Whether it be testing, bolusing, eating, has a low reservoir or low battery.
If Keira beeps, it is usually because she has no formula left or has a kink in her tubing. Kinks in her tubing are the most annoying part of the whole thing right now. We are SOOO happy she is not having seizures with eating and drinking anymore, but she moves around a lot and by the end of the day the tubing is quite a mess and she beeps constantly. I even showed Kailyn how to pause, untangle and restart so I don't have to get up so much. LOL Hopefully we can move on to bolusing during the day soon so she can roam free. She is supposed to wear her cute little back pack on her, but it is about a 3rd of her weight, so instead I just let her drag it when she doing her little army crawl. I need to get a picture or video. It is so cute. :)

Keira Got a G-tube For Her 1st Birthday.

2010-10-24T10:07:00.005-04:00

She turned 1 on the 19th and had the surgery the next day. Isn't that what every little baby wishes for? ;) Well, her parents did because she had not gained weight in 6 months and was slowly falling off the charts in weight. She was in danger of aspirating on her food/formula and was almost always having seizures while eating. She would eat just enough to keep her body satisfied. The minute she had enough she refused to eat. This was all documented on the Video EEG done at Children's Hospital Boston. We were fortunate enough to have had the surgery moved and done even sooner in Maine. He did a Mitochondrial biopsy at the same time. Now, we are trying to get 960 calories a day into her body to plump her up. This will be done with a continuous 24 hour feed going into her stomach. They say it won't be like this forever and we can work up to bolusing meals or just doing the continuous feeds at night, but for now, she has to have a cute little back pack follow her around. She does not have the strength yet to actually wear the backpack, but hopefully when she is fully recovered she will. If not, I will be following her around with the bag while she is awake. I also imagine her dragging it when I am not looking.

Her recovery in the hospital was uneventful and the Doctors commented to her frequently, "Don't you know you just had major surgery?" :) She did have her painful moments that I had to rock her through, but I think the worst part for her was not being able to get on the floor and play. The feeding tube is long and sticks out of her stomach at this point. (for the g-tube unsavy people like me) I had no idea what it would look like, but for now we plug the feeding bag (that sort of sounds like she's a horse lol) into a tube that come about 3 feet out of her body. We also give her the medicine that way through a port. On Wednesday the big reveal happens. We still do not know what it looks like under her bandages. She smells like Vanilla Pediasure because we can't give her a bath.

Once we got home we did have to troubleshoot medication and she did throw up quite a bit the first night. They were giving us Depakene in the hospital, which dissolved well in water, but Depakote does not. So we tried to feed her the Depakote sprinkles and it set off a reaction of throwing up 4 times, with the last being at 5am. I crushed up her Depakote as well as I could with a herb crushing bowl and gave her some (not quite sure how much though) through the medicine port. If we could not get the medicine in we would have to bring her to the ER and THAT was not happening!! (unless I think I am dying I seriously will not go there) In the meantime, the Neurologist on call called in Depakene in liquid form for her to take from now on. It's not exactly "the same", but it is controlling her seizures along with the Zonisamide. She threw up yesterday when an unnamed person (not me) carried her up to her room by her stomach. We are slowly titrating her up to the 40 calories per hour that they want her to be on so she does not throw up. Once she is tolerating that we will do little bites of food for taste. Little bites do not cause seizures and we want those taste buds to develop.

Here are some pictures of pre-surgery, post-op and recovery. We barely have to give her Tylenol now. She never cries and does not seem to be in pain. She does get tired quickly, but we are 4 days out and I expect that to get better.

Pre-surgery on Wednesday with Nanie

Post-Op

Starting to take off her No-No in recovery

Playing in her hospital room a few hours after surgery

She finally crashed

But woke up and found a cord to play with

Puffy face the next morning.(Thursday) Apparently, it is from all the fluid they give them in surgery.

Taking a nap with the G-tube finally hooked up on Friday

Finally at home again on Friday, sleeping in her car seat. Must have felt comfy in there. It was her first good nap in a while. She still has 2 inches and 14 pounds before she outgrows it. :)

At home the next day playing. Do you see the tube taped to her back so she can't get to it? :)

The tube goes all the way to this cute little back pack that has the pump and the bag with the Pediasure in it. The pump only lasts 4 hours without charging it.

Tube to back pack picture

Playing with a cord that is not a feeding tube to give us a break from telling her not to touch the other one. Hey, you have to pick and choose your battles. :)

Just Playing

Keira this morning. (Sunday Oct 24th)

playing with her favorite toy. Our Sweet Angel.

I got my second wind (as usual) so here is an update.

2010-10-13T21:25:00.002-04:00

We went down to Boston yesterday and the Epilepsy specialist (I know there is a specific way of saying it, but I can't say it right) lol is being very aggressive with her treatment. He does not know what is going on, but has ordered every test under the sun to try and figure it out. We got the Lab work done last. After our visit to the GI. One test came back really high and that was ammonia. (The genetic testing will take longer) He called our primary care Doctor early today and asked that we have that level rechecked to make sure it was accurate. This assured me that he was on top of things. We have had to beg for results from the other Neurologist, so this was a nice change. The high ammonia levels could be from the tourniquet, her being sick (which she is not visibly sick, but both siblings have colds) or the Depakote.

She also has an appointment to have surgery to put the GI tube in next Friday morning. He rushed us right down for an emergency appointment with GI. We got scheduled with the nurse practitioner, but she had the Doctor and nurse educator come in because she needs to get the surgery right away. She is not getting enough nourishment and it is VERY dangerous to eat while having myoclonic seizures. This is the first we have heard about this. Probably because what is happening is very rare and even the expert Doctor with years of experience has not seen this many times. (if ever?) We go down to Boston next Thursday for a pre-op appointment and have a hotel room reserved within walking/shuttle distance to the hospital for 3 nights.

I went with her today and got her developmentally assessed privately. They said she is at a 9 month old level and we will start services, for speech/OT and PT within a month after the GI tube is placed, healed and things have settled down. CDS has drastically cut services AND many providers won't take CDS kids anymore (because the State is not paying anyone and when they do it is way less than insurance) so it is better just to go through our insurance. The good thing is that she has been doing some of the things she had lost again over the last 5 days. Hopefully that continues. I wonder if it has to do to the Depakote and ammonia. We decreased the Depakote and she got some skills back?? hmm..... Our goal is to get her back to where she should be and make sure no more regression happens. After the developmental assessment we had to go and get her blood drawn again to check med levels and the ammonia. Poor baby had lots of blood taken from her over the course of two days. Lucky me gets to hold her while she screams and cries through it. (sarcasm)

Our insurance approved the Specialist in Boston for 6 visits this year so he will be our primary until she gets all straightened out. We will move the GI stuff up here since we will have to go to a feeding clinic often etc...
I am happy we are moving in the right direction, scared about the surgery (I don't want to see my baby in pain, but I want her to get nourished properly and not aspirate on food) Hoping for uneventful test results. It sort of feels like the Type 1 Diabetes thing again except we get to prep for it.

Thank God for Scrapbooking club and Kindercamp. Kailyn was convinced she was too sick to go to school and was fighting with us tooth and nail about not going until I reminded her she would miss her first Scrapbooking club meeting. She stopped the screaming and crying and off to school she went. Sam LOVES kindercamp so it is very easy to get him out the door. It also allows me to go to these appointments sans Sam. lol

Keira is still the happy, bubbly, easy going baby that she always has been. Everyone tells me she should be a baby model and my reply is "We don't have time for that". I'm not sure if they tell all the babies about to get their blood painfully taken from a stranger how pretty they are? I am starting to think they might because it happens so often. lol She was saying Momma again a few days ago (babbling), Dadda constantly and waves and says hi inconsistently again. If I have her trapped in her car seat I can get her to give me high fives sometimes and she gave me a "so big" once. Her brain knows what these things are and she wants to do them, but her body won't let her. She even shakes her head no if she does not want to try.

I am exhausted, but I still have energy to move the sun and the moon for my kids.

We Went to Pumpkinland Today

2010-10-09T21:49:00.001-04:00

It was COLD with the wind whipping around and we were on the side of a hill that was wide open with no where to hide from it. The views of the foliage were beautiful. The kids had a blast and made sure that we did everything. I had fun watching them filled with excitement. Keira got to get out when we ate and when we were in the munchkin corn maze. The wind whipped the corn stalks around, but created a wonderful escape from it. We stayed for 3 hours and had to keep our little peanut hidden in her car seat carrier because of the wind. I would have brought her bunting if I had known. She slept for a majority of the time. Here they are having a ton of FUN!!!

Our Visit to Children's Hospital Boston: Synopsis and Questions.

2010-10-08T19:53:00.012-04:00

Keira's current diagnosis:
Infantile Myoclonic Epilepsy

She has a sister with Type 1 Diabetes (age 8) dx two years ago who has history of reflex anoxic seizures and a brother with a dx of Autism (age 6) 3 yrs ago. He is doing very well and in a typical classroom without supports. (Title one for Math and Reading)

Keira's first symptoms started around June 5, 2010, when she got her first cold with a slight fever. She did not have a febrile seizure, it looked more like a startle response. The Pediatric MD assured us that it was a startle response at the time. It would happen with different sounds, when she looked at different lighting and then evolved into being spontaneous in clusters of 3 with her eyes rolling to the right side for no apparent reason at all. It also started to happen when she was drinking. At that point she was 7.5 months old and had started on chunky solid foods with no problems.

This is when we got concerned and called the Ped MD again (July 13, 2010). She had us come in and confirmed that they were, in fact, seizures (because she saw them herself) and called one of the Neurologists on staff at Maine Med so she could get an EEG ASAP. That would not happen until three PM the next day.

She had her first one hour VEEG and MRI at almost 9 months old on July 14, 2010 and was diagnosed with Benign Myoclonic Infantile Epilepsy(which meant she would outgrow it with no permanent damage). She had an MRI on July 15, 2010 that came back completely normal. At that point, she was not only meeting her milestones, but was ahead of them in the communication areas. She did not show the EEG pattern for Infantile Spasms (hypsarrhythmia). She was having the seizures anywhere from 80-100 times a day. We were advised that we should put her on meds because she was having them so frequently, so we did. She started on Keppra on July 15, 2010.

Keppra only reduced the seizures in half. She was then taken off of Keppra after a couple of weeks and put on Depakote, which reduced them to 10-20 a day, most of them happening when she ate/drank, when sleepy, and riding in the car. She at one time started to refuse the bottle and was down to 5 ozs of formula a day. We got her back up to taking a reasonable amount because we forced her to drink through the seizures using a bigger nipple and cutting more holes in them (12-15 ozs a day). The Depakote was then increased on August 24, 2010, when her therapeutic blood levels were tested and she was still only at 83. Optimal levels are between 50-100. After this increase we still saw no reduction from the 10-20 seizures a day and she was almost always having them when eating/drinking, sleepy and riding in the car backwards. Then around Sept 15th we realized that she was not meeting milestones and was even losing skills she had already mastered.

She used to do these things easily and can no longer :

Give us high fives. Clap and say "YAY". When you asked her how big is Keira, raised her hands for "SO BIG". Wave hi and bye bye easily (we have it on tape). Use her hand to sing a Native American song. Eat foods that were chunky, holding the foods and putting foods in her mouth with a pincher grasp. Say Momma (looking at me) Dada and Hi appropriately. She started to give a few sporatic high fives and make the momma, dada and hi sounds again as of (Oct 9, 2010), but it does not come easily to her.

Keira can:

Respond to her name. Laugh, giggle, and smile when people are playing with her. She screams sometimes to either hear her own voice, get what she wants or to try and fit into our noisy, chaotic house. Shakes her head No. She shakes her head no regularly because she does not want to eat. She knows it will trigger a seizure. Gets up to a sitting position and down from one. She does an army crawl. Has a pincher grasp, but won't put things in her mouth to eat in fear of a seizure. She will chomp on things that are not food, but not swallow. Bangs toys together. Picks up utensils. Crosses the mid line with objects and transfers an object from one hand into the other. She gives (cave) kisses when you put her right up to your cheek. Likes to read books. Likes to play with toys/experiment. Her fine motor skills might be right on track and she does have sensory issues. Hates baths, being touched, etc.(we have an evaluation for this coming up soon)

Keira has had a hard time with:

Since birth she would not apply pressure on her legs and would fold them up so we could not try and make her stand. We now make her stand and she curls her feet up most of the time, but yesterday she did it without crying or curling her feet up for the first time (Oct 7, 2010). 12 days from 12 months old. It is not a preferred activity, but we do it every day.

When presented with a new object she sometimes hovers her hand over it for a long time. It seems like she knows what to do, but her brain won't let her hand move. Once she gets into it she has no problems banging around etc.

Keira has never fed herself with a sippy cup or a bottle. She can hold them, but won't do it.

She has regressed to eating only stage 2 foods and formula from a bottle.

She does not use gestures, one after another, to get needs met, like giving, showing, waving, and pointing. She does reach for what she wants. She does not play peek-a-boo, patty cake, or other social games. Make sounds like "ma," "ba," "na," "da," and "ga" on a regular basis. (sporadic ma, da and ha sounds) Sometimes you can catch her saying Momma, but it has no meaning anymore like it did when she was looking at me and saying it and it is not on a regular basis.

After the realization that she was not meeting milestones and that she was having seizures almost always whenever sleepy, riding in the car, eating and drinking we rushed her down to the ER at Children's Hospital in Boston September 17, 2010. These seizures can last anywhere from seconds to three minutes in length now. The longest ones are when she is eating. She also tightens up and curls her toes whenever drinking a bottle. I had mentioned the loss of skills and eating problems with the Neuro in Maine, but he replied with an unhelpful, "Huh, that is strange." Children's Hospital Boston saw the seizures on video and in person and admitted her to do another longer VEEG. The first MD said they would do the VEEG for 24 hours and that they would check her Depakote levels to see if there was room for an increase and come up with some new meds based on the VEEG.

The second MD said that the VEEG showed the Myoclonic pattern, but was non-committal about identifying the seizures as myoclonic and said that they could also be clonic. He said that she looked like she was having reflex seizures and to talk to our MD and Dr. Expert (at Children's). We were scheduled to see Dr. Expert in Nov (that was in Sept) and this MD wanted us to see what Dr. Expert had to say about what meds she should try. He never checked her Depakote levels and did not want to step on anyone's toes. We wanted to make sure she was not having Infantile Spasms, but on the other hand were disappointed that he did not check her thoroughly--he never touched her. Especially, since we were talking about our daughter's developing brain and our difficulty in keeping her properly nourished. He did mention that she could still have developmental delays with myoclonic seizures and doubted that the Depakote was the problem.

We went back to Maine and called her Neurologist promptly on Monday Sept 20, 2010 as directed. After 2 days and 3 calls he called back and I had him look at the video of her seizing and he ordered an immediate increase of Depakote (without checking her levels). After 7 days with no change he ordered blood work checking her levels and other blood counts. Her Depakote level was 150, 50 levels higher than it should be. He ordered us to take her down to the first level of Depakote because the seizures never got better with the increases and started her on a new med called Zonisamide. After 3 days on the Z med she physically could not move. I called the Neuro again on October 1, 2010 in a panic and he had us decrease it in half to titrate her up even slower. She started to move again, her seizures when being tired have reduced, but otherwise we have not seen any improvement in her seizure activity. Some days we think we do and then the next day slaps us back in the face with even more seizures. Sometimes I feel like I can snap her out of the seizures and other times not. I never can when she is eating, drinking, or in the car. Just when she has spontaneous ones from being tired.

Our questions for the Epilepsy MD:

Are you 100% sure the diagnosis is correct and if it is not, what could it potentially be?

Should she have other testing done to see what is going on?

Such as, PET, (Blood Testing) Metabolic and any other type of disorders that cause seizures?

What do her toes curling while drinking and seizing mean?

I read that seizures with eating are typically focal motor seizures and are symptomatic?

Is she on the right medications?

What are her percentiles today for height and weight?

If eating epilepsy is treatment resistant (which I have read), should we put her on a feeding tube to make sure she is getting the right amount of nourishment and does not have to force herself to have seizures? This way we can avoid more medication that may be causing developmental delays? We are very concerned with the eating/seizure component and it causing her to not gain weight.

I have the G20210A prothrombin gene mutation. Could she have something similar to this causing her problems?

The diagnosis for infantile spasms can be made even if one of the 3 elements is missing (according to the international classification). She does not have hypsarrhythmia, but has the other components? Does Boston not follow this classification and only rely on the H pattern?

Do you feel comfortable working with our Neurologist in ME and if not is there someone you can recommended to us?

Our appointment is Tuesday at 10:30 in Boston with the Child Epilepsy Specialist

I have not decided if I am going to give this to the specialist. If I do I will have to do some rewording. ;)

Interesting Fact

2010-10-07T18:49:00.006-04:00

Kailyn had Reflex anoxic seizures all the way up until she was around 4 years old. She would get so upset she would lose her breath and faint. One time she got scared in a pool and did this. It scared everyone around her to death that she had drowned.
We had no idea that was what it was called back then, but were reassured it was completely normal. We were told not to worry because she would grow out of it and she did. I came across the name for it when researching for Keira. It's not Epilepsy, but interesting because it is a reflex seizure.

Cheerleading

2010-10-05T23:11:00.004-04:00

Was a hit
There were at least over 50 girls there.
She was still begging to show me the cheers she had learned as she walked up the stairs to bed.
Gorham does not have any teams for her age and they are thinking
of making one next year and she was begging me about it.
So watch out everyone!! She will want to cheer for you and has two weeks
until the next practice to get those cheers down!!
She is recovering from a sinus infection (when Kailyn is miserable, we all get to be) and her blood glucose numbers have been really high. They are doing testing at school, which she does not seem to mind, but I am curious how she does when she is high and producing trace amounts of ketones. In the past she has not done well at all.

I cut Sam's hair again today. It came out ok as usual (lol) and we need to buy scissors so I can fix it up before picture day next week.;) I figured out that he is actually learning in school.
He has memorized some sight words. So YAY for learning. He misses some work when he is pulled out for Title One for Math and Reading, but I do it with him at home. He loves spelling words on his buzz lightyear game every night before bed after we read. I hope it is helping him with letter recognition. It will be interesting to see where he stands when we go to conferences at the end of this month. If he is way behind we will be requesting testing for Special Education. He still has is Autism dx.

Keira did three things today that made me feel so much better and melted my heart. She gave me one of her sloppy kisses again (my Mom calls them cave kisses) AND a high five. Her motor planning is definitely off, but it IS there. She can not consistently give high fives, but she knows how to do it and can when her body will let her. I know that she understands what I say, but it seems like her body can't do it. Sometimes she even shakes her head no (like no, I am not doing it or can't do it) She was also army crawling all over the place today. Something I have not seen in over a week. All of this despite the fact that she has a miserable cold. Her seizures have disappeared when she is drowsy/sleepy, which is also a change from last week. So sort of progress. As a friend has said "deep breaths". She has appointments for independent evaluations for speech, OT and PT with CDS and a private therapy group for this month and for a feeding clinic at Maine Med. This all happened today. This on top of her big appointment next Tuesday. Can you say "head spinning"?

Seth wonders why I am always so tired at night. I really don't like giving him a play by play of my day and we just talk about highlights or whatever else is on our minds. When he asks again I think I will ask him to look at my blog. (I don't think he ever has) Maybe he will get it then?? ;)

Organization for Keira's Epilepsy Journey

2010-10-04T23:00:00.001-04:00

Referral to Doctor in Boston in place.........check (insurance is covering 100% even though out of network, but we had to get prior approval. Our Ped had to write a letter to the insurance company)

All medical records at the Dr.'s in Boston ...........check

Referral to the Storey-Smith Clinic for a full OT-PT and Speech eval.........check

Referral to Child Developmental services..............check

Referral and appointment for a feeding clinic at Maine Med.........check

Researching things that might be causing the seizures and making note........... check

Still need to:

Write all questions down for Dr. Expert.

Get copies of studies that discuss things similar to what is going on with Keira.

Figure out how to get food into the babies body so she can get some meat on her bones. She is too skinny.
I am guessing 97th for height and 5th for weight.

Good note:

Insurance covered almost all of the $3500 one day stay at Children's Hospital Boston even though it is out of network. That was good news for the day.

Keira's seizures are always triggered by eating and drinking now.

2010-10-03T18:01:00.003-04:00

The were just spontaneous (occurring without any triggers), but this is where they are at now. This is part of a study I found and I am putting it here so I can decipher it.

"Seizures induced by eating are characterized by seizures closely related to one or several aspects of eating. The clinical triggers of a seizure are usually stereotyped for each patient, but patients may have some points in common. Rare patients have seizures at the sight or smell of food; others may have them immediately after a heavy meal, suggesting gastric distension as a trigger (Gastaut and Poirier 1964). Seizures with eating are typically focal motor seizures, with or without auras or automatisms of temporolimbic type, and are almost always related to symptomatic epilepsy. Seizures induced by eating are usually associated with localized or regional EEG epileptiform activity either from temporolimbic structures or from suprasylvian regions in association with larger lesions. EEG epileptiform activity that is generalized from the start is rare.

Rémillard and associates suggested that patients with temporolimbic seizures activated by eating have fewer spontaneous attacks and are more likely to have such attacks from the onset of their epilepsy than are patients with extralimbic, usually suprasylvian, seizure onset who have less constant activation by eating. Patients with suprasylvian seizure onset usually have more obvious extratemporal structural lesions and possible activation by specific thalamocortical afferents (Remillard et al 1998). They may also have seizures with other forms of buccal stimulation such as tooth-brushing or kissing. Koutroumanidis and colleagues reported a case of adult-onset sensitivity to toothbrushing only, with normal imaging and interictal left frontal epileptiform activity, and suggested that this was cryptogenic reflex epilepsy (Koutroumanidis et al 2001). A prevalence of approximately 1 per 1000 to 2000 epileptic patients has been reported (Vizioli 1962; Nagaraja and Chand 1984). The unusually high figures reported for Sri Lanka seem related to an idiosyncratic definition and to ascertainment methods (Senanayake 1990)."

Seizures with eating are typically focal motor seizures, with or without auras or automatisms of temporolimbic type, and are almost always related to symptomatic epilepsy.

Good News All Around Today

2010-09-27T16:55:00.003-04:00

Kailyn seems to be doing really well in school. Her teacher said that she was a nice girl. She consistently comes home with 3's and 4's on her papers (A's and A+'s), except for spelling, but she has excepted that it is not her strong subject and she will do her best and feel good about that. She will start Chorus and Cheer Leading within the week. Soccer did not work out, but it was not surprising. She is going to try and earn her "bribe" in other ways. ;) We went to the Endocrinologist early last week and her A1C was good. The staff was surprised that we were doing so well considering everything else that was going on.

I have spoken to both the Kindercamp staff and Sam's Kindergarten teacher about Sam. Both say that they enjoy him and he is doing really well. Just a little loud (we knew that one already ;)) Sam is receiving Reading and Math Title 1 services during regular Kindergarten. We fully expected he would qualify for this. This is not Special Education, so he is still considered to be going to Kindergarten without any supports. Hearing the info about his behavior today made me feel really good. He lets me know about the kids that do have poor behavior though. lol A far cry from what we thought would happen 3 years ago.

After calls to the Epilepsy specialist in Boston pleading for an appointment earlier we secured an appointment for 2 weeks from now. This is so much better than waiting 1 1/2 months. Her med increases don't seem to do much, but make her tired. Her Neurologist here is nice, but he does not specialize in Epilepsy and is too slow to respond. He also seems to be doing some things backwards. I expect nothing less than prompt, truly committed service when it comes to dealing with my child's brain and development. With blood sweat and tears (a little dramatic ;) ) she is finally begrudgingly bearing weight on her legs. She hates it, but it has to be done. Huge accomplishment. :)

I am tired, but I feel good that things are moving forward. I even made myself an appointment to see the Doctor and Dentist !! I just need to remember to go to them.

Keira Update

2010-09-24T20:55:00.001-04:00

We were told Keira's info would be faxed to her Neurologist in Maine on Monday and he should do a med change THAT day. That, of course, did not happen. He called Monday afternoon, asked for info and said he would give me a call back. I waited for a call on Tuesday. Nothing. After 3 phone calls to him on Wednesday (2 from me, one from Seth) he finally called back and said that the discharge summary from Children's did not have enough info. We had MD's lined up to put pressure on him to work on Keira if he did not call back and Seth was going to storm the office by Thursday. I told him to go to the link of her seizures on YouTube so he could see what was going. He did not have the precious EEG results in his hands from Boston and did not feel as though he could make a med change without them. He looked at the video and ordered an immediate increase in Depakote again. Her diagnosis right now is two types of seizures. Clonic and Myclonic. Only two days and no changes. It usually takes a few. On Monday we will go for blood work and he will probably add a medication on top of it.

We are waiting for our appointment with Dr. Expert in Boston on Nov 9th. Apparently, all of the other Neuros are scared of doing something because Dr. Expert might change everything???. I have no patience for this stepping on toes crap. Yes, Neurology is not a perfect science, but at least you could try SOMETHING??? We will start bringing her to a feeding clinic at Maine Med so she can gain weight and get the right nutrition and I decided that I will work on her with bearing weight on her legs on my own. She hates it, but it seems to be her only PT problem and it may be resolved once she is on the right seizure medication.

I find it very frustrating at times that MDs do not want to step on someone else's toes when it comes to a BABY's developing brain. The next time someone tries to defer us to the next Neuro I may have to be refrained from slapping him/her upside the head. It is ridiculous that we are getting the run around about this. R.I.D.I.C.U.L.O.U.S. In the meantime, I will try to fill my time with, taking the best care of my kids as best as possible and doing projects around the house so I don't think about it too much.

Finally did something to the outside of my house.

2010-09-24T20:14:00.000-04:00

The decks needed to be stained (the back one is still a work in progress) and the front of the house in general needs to get started on. We will do a little at a time. I decided to paint the door today because the conditions were favorable and it takes me no time at all to do tasks like that. It is therapeutic, unlike cleaning the house, which is purely a pain because you never see progress. At least with a painted door or stained deck it stays that way for years. We are also making a rock walkway to minimize dirt coming in through the front. We will be planting a few flower bulbs so that flowers pop up in the front of our house in the spring for the first time. Eventually we will get to shrubs etc.... Here are the pics of the door and deck. You don't have to like the color because our family does. Just admire my handy work ;)

JDRF walk for a cure for Type 1 Diabetes

2010-09-20T11:43:00.001-04:00

They made it!! It was touch and go. Kailyn was developing a major cold, Mommy and Daddy were in Boston the day before. But, we made it home in time and Kailyn was determined sick and all to walk and make sure that she would not let down all of her fans and people that donated to find a cure. Keira and I could not join them, but they had a blast without us anyway. Kailyn raised and amazing $525 to help find a cure. Next weekend she is doing the Diabetes Dash in Cumberland with her brother and father. This is a new event. The 3rd year they have done it. Our first. http://www.diabetesdash.org/. Here are pictures of them on walk day. I am so proud of Kailyn!!

The cookout at the end. A VERY important part of the walk. ;)

Adventures in.... What the heck is going on here seizures?

2010-09-20T10:59:00.009-04:00

We rushed to Children's Hosptial Boston on Friday Morning because Keira is starting to not meet milestones and her seizures are increasing and evolving. These symptoms all pointed to Infantile Spasms. If they are infantile spasms time is of the essence and you DO NOT fool around. They admitted her to do a 24 hour EEG.  I have been told this is the #1 hospital for child neurology/ epilepsy in the country if not in the entire world. People come from all over the globe to go there for an opinion.
We left the next day with good news and bad news.  We were told that her seizures were clonic (not myoclonic), but the Epilepsy specialist did not seem convincing. The major problem with Keira's seizures is that they are very rare. The other problem is that Neurology is not an exact science and every Epilepsy specialist will have a different opinion on what track to take. I think he wants to wait for the MD with more experience to give more info and decide the course of medication. He was convinced they were not Infantile Spasms (which is a good thing), but also told us that other seizures can cause delays. He said to start services locally, call our regular Neurologist to get med changes and to work with the other Children's Hospital Epilepsy Specialist to come up with a plan. He did not want to step on anyones toes and add meds that may change in a month. We meet with the other specialist in Boston on Nov 9. So close, yet so far away.
Our local pediatrician called this am and has already called in a referral for an eating clinic at Maine Medical Center. Keira will chew now, but now swallow. She is not gaining weight and has lost a little bit.  She also made a referral to a Physical Therapy and Occupational Therapy clinic for an evaluation.
I feel good that we are doing all that we can to make sure that she can develop normally. Anxious to hear what Mr. Expert has to say.
Thrilled that Keira is still the happy go lucky, easiest baby in the world. (besides seizures ;) )
Here are a few pics of our stay in Boston and video of what her seizures look like now are on youtube. Let me know if you would like the link.

Daddy Reading Pat the Bunny

The EEG machine with Audio and Video recording. You can see the little picture of her in the upper right hand corner. The squiggles are the activity being recorded in her brain.

Our view of Boston if you looked left.

The sign that says not to swear Daddy. I also was recorded because I ended up crawling into the crib and slept with her because the cot was like sleeping on the floor.

My latest creations

2010-09-13T23:03:00.002-04:00

Seth has been asking for pictures of the kids to have for his desk at work for quite a while. I did not order big school packages for either of the big kids last year and we don't do studios anymore. If I click the camera enough times I get pictures I like. This is actually a hobby I have. Wait..... did I just say I have a hobby? ;) Anyway, I took all of the most recent decent photos I have taken and made a collage of each child to put in three 5x7 frames. I use my own printer and photo paper that I bought at the store. The whole project cost $10 and 3 hours of my life (the printer was giving me trouble). The older kids wanted Keira in their collages. :) The best part about the process is that we can reuse the frames and I can update the photos. All three frames are supposed to be on Seth's desk as of this morning. Here are the collages.

Soccer, Sun, Fun and Feeling Normal

2010-09-11T22:31:00.007-04:00

We had a family soccer day today. It started at 8am for Sam and ended at 11:30am with Kailyn.
It may seem like a pretty typical day, but WE are not a typical family. It has taken a long time for us to get to this day. A day without constantly thinking about issues going on with any of the kids.
I can say that I thought about Diabetes, Epilepsy and
Autism for a nano second here and there. (Keira had a seizure during her bottle and Kailyn looked like she might be low once) However, it was NOTHING like it was two years ago when Kailyn was first dx'd with Type 1 D and we were waiting for the sky to fall at any second. We tried to get right back into her normal activities, one of which was soccer, but going to a soccer game was NOT care free then. I can say that today it was and it was FUN!!! We ended up having to cease all extra curricular activities right after Type 1 D Diagnosis. Everything was routine and felt......well.... normal today.

We enjoyed watching our Kindergartner on his first official team. He was out there playing with great confidence and was even instructing some of the other children about the "rules". Something he is a stickler for. He may knowingly break them sometimes, but he calls people out if he sees they are breaking them all the time. A habit we are trying to break. ;) Three years ago at this time he was diagnosed with Autism. He could barely talk then and we had just started to use the PECS communication system to try and figure out his wants and needs. We hoped he would be able to function in society at some level, but thoughts about being on a team, let alone instructing other children, were far from our minds.

Our Third Grader bravely tried soccer again even though it was causing her to have anxiety stomach aches once we got there. We recognized those stomach aches for a brief moment and she got right back out there. Joining a soccer team may seem pretty normal and mundane for most third graders, but for Kailyn it is a huge milestone. Before her diagnosis we were into all the activities and she enjoyed them with ease. Once she was dx'd, anxiety about everything set in and she did not want to do any group activities. She turned a corner this summer in regards to this when I gave her a cellphone so she could attend vacation bible school. I decided that she needed to take the next step and join a team of some sort. We (meaning I) picked soccer. I did bribe her, but I am proud of her nonetheless. She had fun and was showing self confidence by the end of the practice AND she wants to go back!! I am pretty sure that soccer won't be a major part of her life in the future (You never know though), but we made that HUGE step and that is all that counts.

PS: We do have one problem. She does not like how her mouth guard feels. I told her to not wear it and she said that she has to because she wants to be a goalie! ;)

Have I told you?

2010-09-07T21:54:00.000-04:00

Keira is getting into the sitting position on her own and can get down to. She has sat for hours the past few days and today finally decided it was time to reach out and try to get something. Getting to the sitting position is not fun after a while when you can't get down. The only things she could do were sing her Native American song, clap "YAY" endlessly and tell me how big she was over and over again. I think she is grateful she finally figured out how to get down.

When we took the kids to Jokers, Sam and Graham rode with me. Joker was no where to be seen and this provoked many questions. Where was he? Was he sleeping? What does he look like? They have seen him on the commercial so they know he exists. I did not have the heart to tell them that Joker did not exist. ;) Graham actually calls it "Joker's house".

Kailyn wants to be a Rock Star for Halloween and is already researching costumes online. She told me today that we would probably have to go to Boston, New York or Los Angeles to get the outfit because we don't have anything sparkly enough around here. Um........., dream on kid. She did find some pretty cool ones on the American Girl website. Only one of a few websites she knows how to get to that sells clothing. lol

School has started. Labor Day has come and almost gone.

2010-09-06T21:10:00.003-04:00

     Both kids like school and are starting to settle into their new routines. Kailyn's anxiety has calmed down and the Type 1 Diabetes management routine seems to be going smoothly. Two days without any calls at all!! Third grade is a lot more mature than I remember it being. Kailyn has already been introduced to YouTube via her music teacher (I consented, but did not realize what I was consenting to, if that makes ANY sense. LOL) and her parent handbook talks about weapons, drugs and bullying. She wanted me
to read her the handbook, but I changed the subject. If something of that nature comes up we can talk about it then. (This is when I question, Should I home school her?) lol

     Sam LOVES school. He is going to Kindercamp before his pm session a few days a week so he can do some unstructured play before Kindergarten. Kailyn still asks me to home school her when she is low and if
she is not feeling well. She tells me the reason she wants me to home school her is because she misses me.(awe) Not a good reason. LOL If she ever comes up with a good reason than I am totally open to it. Regardless, she happily got all of her things organized and ready for back to school tomorrow.

There are a lot of other things going on:

     I finished the girls room and Keira has moved in. Her stuff is not, but her bed and body are. She did great the first night, but tonight I had to rub her back a bit. Nothing in the grand scheme of things. I think she was upset that we were making her go to sleep and she could not talk to Kailyn anymore.

Sam turned 6 on Friday. We went to Jokers for the first time ever (I avoided it for 8 years) during a time when most kids are in school. Gorham had Friday off so it worked out well. I can't imagine what that place is like with a packed house and never want to find out.

I am in the process of staining the front and back decks. What a Pain in the BUTT!! I have already spent 5 hours doing it and don't even feel like I have touched the surface. I am one of those people that likes to get a project done in a day because you NEVER know when I will get back to it. Hopefully we won't have half finished stained decks for a few years. (no pics yet)

Here are the kids having some last minute summer fun with the pool while we were taking it down. They are not allowed to do this when fully inflated because all of the water can come out completely if you lean to one side by accident. LOL

So to recap: Friday Sam's birthday Jokers am, Cake/Presents pm. Saturday cousins in the am and then rest for the remainder of the day. We were all wiped out. Sunday paint/finished girls room and moved Keira in, took the pool down. Monday stained the front entrance deck for 5 hours. Both Keira and Kailyn were acting either tired or sick. Could not tell. Not a Labor less holiday weekend, but a productive one. :)

We are getting there. School starts on Monday. (Hooray!!!)

2010-08-26T23:39:00.007-04:00

I "think" we are ready for school. It starts Monday (FINALLY) All the supplies and instructions are at the Village School in regards to Type 1 Diabetes. I forgot that we had to "train" a new school about Kailyn. She is 8 and in 3rd grade now. That means she moves to the 3rd through 5th grade school. I also forgot about the additional supplies and paper work we have to do on top of all the regular paper work and supplies. She has T1D supplies and regular school supplies to get this year. She has never had to buy supplies before for school. Just a back pack and lunch box. This year she had a list. I forgot about those expenses. Both are now bought.
Kailyn went to 3rd grade orientation tonight and froze. SO happy I passed down that anxiety gene (sarcasm) She could not talk to anyone, even her good friend Hailey. She was sad afterwards that she did not say hi. Then she freaked when it was first come first serve seating at open house and she ended up sitting with no one that she knew. Apparently, the cluster of desks were in 6 and the 5 friends she knows were at one cluster with a little girl that she did not know. Might as well lather the anxiety on even thicker.(sarcasm again) Life is hard enough at this time of year. Add on K's anxiety and some days seem to be insane. Looking forward to getting into a routine again.
Sam does not seem to be phased about going to Kindergarten one bit. He does not seem to be too excited unless you mention it. No anxiety either.
The room is coming along to. Almost done. I need to get the curtain hung properly. I thought I found a stud, but the screws are still coming out easily. Also need to sand, do touch up painting, desk chair for Kailyn, clean, then move Keira in. Here are a few pictures:

This is the three of them watching TV on Keira's side. I thought it was funny. The TV is in there for when we work on the room, but is coming out.

So tired.

2010-08-23T17:39:00.003-04:00

School starting soon (Aug 30), projects going on, school shopping, Dr.'s appointments, 504 meeting, Sam's birthday soon etc... I am feeling like a zombie, but a happy zombie. A little anxious about the new school year and getting Keira's seizures under control, but she has been taking more liquids the last few days. Thanks to my friend Christie for giving me the advice to make her size 4 nipple even bigger. So yay!! Also, once the kids start school that will be done.(anxiety about school starting gone and a break for me) I went to IKEA yesterday with my Mom and sister and had a blast. Bonus Trader Joe's stop on the way home. The closest one is 2 hours away. We have been remodeling Kailyn's old room to make it into a big girl/baby room, with each of them having their own sides with their own stuff. Here are a few pictures of big girl side. Baby side and both sides together pics to come.

Child Like Pink paint, meet Hot Lips paint

There is going to be a desk where she is standing, just needs to be put on now.

Pretending to sleep. The child like pink needs to be touched up a bit, white trim sanded and painted, (My kids got a little chalk crazy), desk put on, shelf for loft bed put on and curtain to separate sides up. Then it will be done and on to decorating Keira's side. There is a big age gap so we want Kailyn to have her space.

Here is a ten month picture I took of the baby on the 19th: 8 teeth

Cute pictures of cute kids

2010-08-13T18:58:00.000-04:00

Sam is SO COOL!!

2010-08-13T18:47:00.000-04:00

He got an early birthday present today. His birthday is Sept 3 and he will turn six. His present is a new bike and helmet. Big boy bike and helmet to be exact. He thought it was so cool that he could go so much faster on his new 18 inch bike opposed to his 12 inch Thomas one. His bike is now bigger than Kailyn's. I thought hers was 18 inches, but it is 16 inches. She will have to wait until her birthday in the spring and will get a 20 inch bike. It is amazing how they fly through the bike sizes. Sam got a visitor from a man who saw him on his Thomas bike. I am guessing the man will wonder why he does not have Thomas anymore? lol
Here is Sam on his new bike (which took me 3 hours to put together today)

Like the Boots??? :)

And the visitor with his Thomas the Tractor to show Sam because he saw him on his old Thomas the Train bike with the Thomas helmet.

Sam is doing really well. He loves playing with friends. Here is a pic of the boys that came over to play today: Graham (my nephew) would not look

He loves to read books, dig in the dirt, play on the swing set, play with his sister, ride bikes, swim in their pool, draw and is a fantastic cleaner. I hope the cleaning continues. He starts Kindergarten 1/2 days on Aug 31. We go with him on the first day Aug 30th. He has some rudimentary alphabet and number skills, but it has been so nice out this summer that I have not pushed it. I have decided that the school can teach him much better than me. He does not qualify for any programs because we delayed him going to school for a year and the specialist who tested him prompted him so he would get the answer. (technically he did not pass, but the prompting made him pass) I am not worried about this, however, because they are SOOO worried about the testing numbers that they will be all over him like a swarm of bees for Reading Recovery or whatever other programs he needs to get. He does not qualify for speech. You basically need to not be able to talk completely to get that anymore, but I think he needs an ABA program to drill proper speech into him rather than going to someone 1x a week anyway.(that won't happen) Hopefully he will catch on. I am mostly worried that he will befriend Seth's ex-girlfriends son who is really hyper/out of control. Sam tends to be a follower. Once I figure out his name I am going to try and tell him to stay away from him. lol (I am so bad)

All in all I feel pretty good about Sam and the tremendous progress he has made over the last three years. He has an appointment with the Dev Ped in October to see how she thinks he has progressed and whether or not we should pursue, press the school to give him services. He could barely talk at this point three years ago. Now we can't get him to be quiet. I have to remind myself that I wished for it and if you wish for something sometimes you do receive it. lol

Sam and his new buzz her earned cleaning. :)

Keira's 9 month check up

2010-08-12T20:24:00.000-04:00

Went really well. She is developmentally right on track, if not ahead in some areas.(YAY) Her only problems were that she has lost some weight and won't bear weight on her legs. The thought is that it is a sensory issue because she has the strength, but chooses not to bear weight on her legs at all. It is a wait and see situation that I will be all over until she does it. She gets all over the place by rolling, rotating her body and pushing off on her foot. She scoots backwards and gets stuck in furniture too. Completely normal for now, but it won't be if it does not change soon. We are supposed to ask the Pediatric Neurologist about the weight bearing too. Our pediatrician does not seem to think it is a big deal at this point. I told her Seth walked late so it could be all his fault-haha.
Her weight is down because she is refusing bottles. Whenever she drinks a bottle she has multiple seizures and she only has them now when she drinks. Sippy cups too because you have to suck out of them. Some days we have only gotten 5ozs into her. I have to make a call into the Ped Neuro to update her progress tomorrow and will report this, but I was also told to wean her onto a cup. With persistence we will be able to do this (so I am told). I don't believe it. The kid is awake 8 hours of the day and I can't see myself now trying to get her to down 24ozs out of a cup for 4 of those hours. I don't feel like I have time to be persistant. I will try it, but with two other older active children I am not hopeful for success. That and the fact that she does not even hold a bottle, Yeah. lol In the meantime, I bought new sippy cups and will take out the stoppers and got the fastest flow nipples for her bottle to see if that works.
No vaccines for a long while now. People with Epilepsy are not supposed to get certain ones and her Doctor asked if she was getting vaccines today (she said because she has too, AAP), but agreed with me that it would not be a good idea to get them for a long time. Her system is too sensitive.
It feels good knowing that she is ahead of the game cognitively given all the challenges she has had so far. SO, good appointment.
Now off to try the fast flow nipple. :)

This is when Type 1 Diabetes sucks

2010-08-12T19:57:00.001-04:00

My older kids went up to camp today (China Lake) to hang with the family. I have to be in constant communication with my Mother In Law about situations regarding Kailyn's Diabetes.(I have no idea how Sam's day went)lol How many carbs for hash browns they get when stopping on the way up? The infusion set fell off so how do I treat her? She is now in the 300 or 400's, does not have any testing strips left, ketone strips or her pump on for her background insulin. I told them to just get her home ASAP and have juice on hand just in case she goes low on the over 1 hour ride home. But, Kailyn had to miss out on ice cream cake and had to rush to get home. Not to mention she just can't go off for the day care free because she has Type 1 Diabetes. I don't mention how sucky this stuff is to Kailyn, but it is times like this that I feel bad for her and feel a twinge of it not being fair that she has to deal with all of this stuff. I never utter a word of this to her because her Doctor told me to never say your sorry or to show her that I was sad that she had T1D. We are always to let her know that this is how it is and she has to tuff it out. She, in turn, has never said that she wishes she did not have diabetes, that it sucks or that it was not fair. Just that she wishes there was a cure. I am SURE she had a good time. They absolutely LOVE camp. We just have not done much this summer because of Keira's Epilepsy. We have to lay low to prevent seizures. Some days I wish I could take it away from her for just the day. I can't and the show must go on, so time to forget it and move on.
Seth can put the new infusion set in, get up throughout the night to check blood sugar levels and put up with the whining. I need to get my beauty rest in preparation for a tired day for them tomorrow. ;)

Just to look back on: What Keira (9 months old) can do Daily (when she feels like it)

2010-08-10T09:54:00.002-04:00

Says consistently, Momma, yay, nana (night night or no no)
Shakes head no
Gives high fives
Gives kisses
Raises her hands when you ask her "How big is Keira?" (So big)
Claps her hands and says "ay"
Takes her hand and moves it over her mouth, (like a Native American song)
Rolls all over the place, rotates body and push off on feet to get what she wants.
Picks up little things with a great pincher grasp
Can eat by herself off of a spoon
Sits up unassisted
Pushes up on her arm and can scoot backwards (gets stuck under piano and couch)
Only 3 to 4 seizures a day
Makes us laugh and smile multiple times a day :)
also to reassure her Mom that she is developing on track ;)

Kailyn wants to walk to find a cure for Diabetes!

2010-08-08T12:04:00.001-04:00

And so we will!
Here is her page.
http://walk.jdrf.org/index.cfm?fuseaction=extranet.personalpage&confirmid=87725312

Kailyn Robie is walking with Team Kailyn on September 19, 2010 in Portland , ME.

Hi!! This year, I'll be walking with my family to try and raise money to find a Cure for Diabetes. I will be riding my bike with my brother Sam and my Mom and Dad will walk and push Keira. We have been practicing and I can ride even farther than 3.5 miles. I am faster than Sam.
Please help me by donating money, even if it is just a dollar, so that we can find a cure. I don't want to prick my fingers anymore all day and night or take shots and wear a pump. I do it because it keeps me healthy, but it would be really cool if I did not have to.If you want to come and walk with us you can. You don't have to donate money to walk with my family. Just come and have fun!!!
Thank you,
Kailyn

"Every hour of every day, someone is diagnosed with type 1 diabetes, the most severe form of a disease that annually accounts for more than $100 billion in health care costs in the U.S. alone. Usually striking before the age of 30, type 1 diabetes takes a harsh toll on people. Not only will they be insulin-dependent for life, but devastating life-limiting and life-shortening complications such as blindness, amputation, heart disease and stroke, and kidney failure are an ever-present threat. Insulin is not a cure for the disease it is merely life support."
"Type 1 diabetes is destructive both to children and to childhood. Controlling the disease requires 24/7/365 vigilance and imposes a grueling regimen. It includes eating a carefully calculated diet, checking blood glucose levels several times each day (by lancing a finger) and insulin injections as many as six per day or delivery of insulin through a pump just to stay alive. It means children and families living by the clock, day and night, for the rest of their lives lives that turn out to average about 15 years less than normal.

You can't outgrow type 1 diabetes. As JDRF International Chairman Mary Tyler Moore has said, "Diabetes is an all too personal time bomb which can go off today, tomorrow, next year, or ten years from now a time bomb affecting millions...one which must be defused." The only solution is a cure. That's why JDRF has a singular mission: to find a cure for diabetes and its complications through the support of research as soon as possible."

Today is Kailyn's 2 year Dx Anniversary

2010-08-05T16:11:00.002-04:00

Type 1 Diabetes. Things were already a tad crazy around here back in August of 2008, my health problems and Sam being diagnosed with Autism less than a year before. But, I remember that day like it was yesterday. It was much like this one. Hot and humid, but a little more sunny. Kailyn just wanted to be held all day before we went to the MD because she felt so crummy.

Here is the story of her Diagnosis.

http://lifeistwosweet.blogspot.com/2008/08/type-i-diabetes.html

The feelings of hopelessness and despair are not there anymore. I no longer grieve for children that are "normal" because this IS our normal. And, honestly, (like my mother says) What kid DOES NOT have something these days? From the outside looking in we look like the perfect family. Would I like to get more sleep instead of checking blood sugars at night or worrying about highs and lows? Yeah. However, we are at a much calmer place in our lives. Even though we are going through some challenges now with our youngest I consider myself blessed and happy. I have three beautiful children, a loving husband and a great extended family.

Kailyn is healthy, happy, thriving in school both socially and academically and turning into a quite remarkable little girl.

I really hope the State of Maine does not cut these services.

2010-08-05T15:35:00.004-04:00

Maybe I should send Sam up there to have a chat with them? Something he could not do 2.5 years ago before his developmental preschool taught him how to play and speak. If it were not for that school,(Woodfords Family Services Preschool, Westbrook) he would not be entering mainstream Kindergarten without supports in a few weeks. So, the State is really just going to be passing the buck to the public school and then to Adult Services (another DHHS program) for the kids (who will eventually become adults) that can't function in society because they did not get the early intervention. OK.. off my pedestal.
PS: Look into cutting Maincare and cut off the people who move here from other states (who previously were from other countries) because the services are so good here compared to everywhere else in the country.

I would like to personally thank the person who invented Easy Set Intex Pools?

2010-08-02T12:34:00.003-04:00

Anyone know the girl or guy? Because really, they have saved summer for us the past few years. My kids LOVE their pool. Even Keira. She puts her little feet in there and kicks away, while squealing at her brother and sisters antics. They could not care less if people call the pools Redneck or Hick.(nor do I) It is just plain fun for them and easy for Seth and I to keep up with. They love to do tricks and to show them off. Here they are doing quite a few of them for me last Friday. (yes, I know the side says no jumping, but we like to live on the edge) lol They also do handstands, flips and cartwheels. All hard to catch on camera. BTW our lawn is getting a tad crispy because of the lack of rain.

Like the green swim cap on Sam?

Keira Watching the Fun with delight

Low Blood Sugars and Seizures.

2010-08-02T12:10:00.002-04:00

are making for not quite sleepless nights, but almost. Keira's seizures seem to be getting better. We don't see any spontaneous ones lately, they are all brought on by stimuli or stress. For example, I gave her a bath this am and she had four seizures because she was scared of the running water and of getting her hair rinsed out. After a while she was fine, but we want to minimize these for her so we are laying low. If she gets scared she has a seizure, if she is touched a certain way when tired she has a seizure and if she drinks a bottle she has major seizures. Major seizures don't seem to come anymore unless drinking her bottle, which is not optional. She also always has more the more tired she is, but like I said, they are reduced. Anywhere from 50-70% on a given day. This is a GOOD thing. It means the meds are working. We start taking a full dose tonight so we will be watching her like a hawk this pm-am. We try to make sure Keira gets her naps and does not get over tired, which means she does not go places very much, nor do we.(as a family) It is making for a low key summer, but the kids don't seem to mind. Thank God for the person who invented Intex Easy Set Pools.

Saying Momma after her tubby

Naturally curly baby Mohawk

SO tired

Kailyn had REALLY low blood sugars the last two nights in a row. Last night was the worst at a 38. We get scared when she is in the thirties during sleep. Our worst fear would be a diabetic coma. She was really good at waking up during lows, but is not anymore. This means Seth or I will be getting up at one hour and two hour intervals throughout the night until she is completely back on track. I adjusted her carb ratios for night time and hopefully tonight she will be back within her blood glucose range 80-150. Thankfully, Seth can wake up multiple times a night and go to work and still function. I am also thankful for my Mommy Radar. I always seem to feel deep down in my bones that she is low. Of course, Kailyn woke up late this am acting like a bear because she was in the 300's. Over correction. It's quite unbelievable how blood glucose levels can effect ones mood. Can you imagine this pretty face grumpy?

Pay Day

2010-07-28T22:50:00.001-04:00

The kids have been earning money around the house doing odds and ends. They started to do this so they could buy a Buzz and Jessie Doll.(Toy Story 3) It was really Kailyn's idea. Her cousin had a Jessie doll and she wanted one. I let her know that they were expensive and she could not just have one. She asked if she could earn the money to get one and I said sure. I figured it would take quite some time. Maybe a month or more??
However, she really did "earn" that Jessie doll. She cleaned and organized the house like I had never seen her do it before. She did it like "I" would do it. Organized the closets, did the dishes, laundry, vacuumed, washed people's cars. They both really got into it (Sam the window washer) and had the money well before I could even pay up.This led to Kailyn asking Seth when he got paid a few times because she knew that was when SHE would get paid. Pay Day finally came and we went off to the store to spend their earnings. This is the day that what Kailyn wanted changed. She no longer wanted that coveted Jessie doll. She wanted to get something else, something more mature. She ended up with this:

A sequin bag/purse, a butterfly ring, doubled layer scarf, necklace, lip gloss and hair products that the TV claims will make her hair full and shiny. What happened to my little girl? She wanted nothing to do with all the toys in those toy aisles. It was her money she earned so she is allowed to do what she pleases with it.(within reason) She had a BLAST!!(We were in the store 3 hours!!) Sam, on the other hand, ended up with just what he set out to earn and was quite happy too.

5 1/2 and 8(going on 18)

I don't want to offend anyone so this title is "Damné si vous faites damné si vous ne faites pas"

2010-07-28T12:14:00.002-04:00

Hope you don't know french if you are offended by the phrase. lol Anyway, Keira's Keppra med is not working. Her seizures have reduced, but not enough to make any of us feel comfortable (including Keira) Sometimes she cries after one and has refused to eat or drink because she knows that it is a trigger. The Ped Neuro is worried that she will a) suffer brain damage if we don't get the seizures under control or b) move on to the diagnosis of severe myclonic or some other Epilepsy if they don't stop. I knew that he said this was a possibility when he first diagnosed her, but we were so happy it was not infantile spasms and the MRI came out normal, any other form of Epilepsy was ignored. We just felt relief.
At this point, she is not showing any signs of developmental delays, but she has lost skills in verbal areas. She was ahead in that area anyway. Regardless, she is still on track in all areas. I was on top of that pre-diagnosis anyway.
The next line of medications to take on her type of seizures is Depakote. This medication comes with a string of side effects with the most alarming one being liver failure. 1 in 1,000 infants end up with it. He said the majority that develop liver failure have developmental delays already or an underlying metabolic disorder. It also can lead to pancreas problems (yes, he knows about K's T1D) Knowing that our family is not favored when it comes to statistics, this makes me even more worried. I just can't naively say, "What are the chances?" in my head, because my thought train is pretty good at predicting that ANYTHING can happen now. Let's face it, lightening (so to speak) has struck us quite a bit lately.
After talking about it at length with Seth though, we have decided that we would rather get the seizures under control than risk permanent developmental delays. We will watch her like a hawk and get liver testing constantly if we have to. According to the Ped Neuro, he is pretty sure she has none of the underlying disorders. So, tonight she starts Depakote. A hard core drug that is used as an anti-psychotic for bi-polar disorder etc.. too. It's first use was for Epilepsy though. Here's to hoping it does not change our sweet babies personality, or makes her sick and gets the seizures under control.

How things are

2010-07-24T22:29:00.001-04:00

Things are going relatively well given all the excitement that has gone on. Keira still has seizures, but they seem to have been reduced by the medication. I think I counted around 20 today. Much better than the 80-100 a day I was counting. The goal is to eradicate them altogether, however. We had to increase the dosage and if they are not almost gone within 4 more days she is going to try another one. I would rather not do this because she does not seem to have any side effects from the Keppra. We notice the seizures the most when she has her bottle and this makes her not want to drink it. Not a good thing and all the more reason to make sure they stop. I feel like the medication is allowing her to think more clearly and she has learned to clap and say yay, gotten back the ability to say bye bye, gives great kisses, high fives and says Dada like a pro. I have tried repeatedly to get her to say "no no dada" like Kailyn, but my efforts seem to be fruitless so far. That was Kailyn's first official sentence. She gets all over the place by rotating her body, rolling and occasionally pushing off on her feet to reach.
Kailyn is turning out to be quite the baker and little homemaker this summer. She is trying to earn money for a Jessie doll (she actually has, just waiting for "payday" to buy it) and can now do the dishes, laundry, organize closets and drawers and do almost any chore for money. I don't want her to do the toilets at this point. Her blood sugar is good overall as long as we keep on top of her. She wants to do it on her own, but she forgets or calculates the carbs wrong. The baking throws it off, but I am not going to deprive her of the experience just to keep blood sugar levels in check. I just need to drive home that she needs to measure out what part of the bowl she licks or to not do it at all. She made sugar cookies from scratch all by herself yesterday. I only put them in the oven. I thought they were great, Seth thought he had an aftertaste of baking soda. After she baked I had her check her blood sugar and she was 360 so I corrected and she ended up 38. Sooooo, we definitely have to watch her.
Sam had a ton of fun at basketball camp last week. He did really well for never playing before and from what I could tell he was one of only a couple that had never done it before. He came in last in the skills challenge (mainly because he can't reach the hoop), but it did not phase him and he wants to play this winter. He did get the ball during one of the games and ran the ball all the way to the hoop (forgot to dribble), but when Kailyn did Kindergarten basketball this is how the majority of kids did it at first. They don't call traveling at that age. It encouraged him to know that most of the other kids had played basketball for either 1 or 2 years. It was fun to listen to other parents talk about how their child was a basketball prodigy (insert rolling eyes here). We are talking 5-7 year olds. lol
We are working on getting healthier as a family. No butter or treats in the house (unless Kailyn bakes) and the peanut butter will be hidden. We are also getting rid of extended cable/dvr. Sam got in a habit this spring of eating out of boredom and watching more tv than he usually does. Changing our cable package will only allow for mostly boring tv(with an added bonus of saving $35.00 a month). We are making them go outside and I am walking again. I got a 40 minute walk in today and my leg did NOT hurt. Woohoo!! My leg hurting afterwards was a huge deterrent for me. That and sheer exhaustion. Now that both have passed I look forward to my walks again. The kids start swimming again on Friday and then in the Fall Sam will do soccer and I am looking into Jukado for both of them.
I almost forgot to say that Keira has four bottom teeth now and is working on her top teeth. She is pretty good natured about it. I still say she is the best baby ever. I love my other two just as much as her, but she is so easy I am in awe sometimes.

Keira has a new crib

2010-07-23T01:02:00.001-04:00

and I think she loves it. (knock on wood) She took a 1.5 hour nap in the am and almost a 3 hour nap in the pm. Having better sleep helps her seizures. Being tired is a trigger. Here are a few pics of her in her new digs. Thanks Nanie and Grampa!!

There are more pictures in the flickr photo stream below

She also has a new hair do. If I put her hair in a pony on the top it curls. My Mom (Nanie) calls this a Tout. I have only ever heard that term from her, but whatever floats your boat. lol

Interesting Statistics

2010-07-23T00:44:00.002-04:00

1 in 400-600 kids have Type 1 Diabetes (Kailyn), 1 in 100 kids have Autism (Sam) and 1 in 40,000 have Benign Myoclonic Epilepsy (Keira). I find myself wondering sometimes if there are any other people in the world like us. Not in a sad, this is not fair, woe is me kind of way. It is more like "Wow, what are the chances?" There are groups on the Internet for Diabetes and Autism, but barely any Epilepsy ones let alone one for children with Keira's condition. If anyone knows how to calculate the statistics please feel free to do so and let me know the results. I'm thinking it is in the millions. lol

Adventures of Benign Myoclonic Epilepsy in Infancy

2010-07-16T09:49:00.003-04:00

Right before going in for her MRI. She was hungry and exhausted

In her hospital issued jail cell (I mean crib)

We have had a tiring 3 days trying to figure out exactly what Keira's "shuddering attacks" (as we described them) were. When they first started happening during a viral illness around June 5th, they looked just like that. A shudder because of being startled. I decided to ignore the symptom in hopes that it would go away. People would comment here and there and it was in the back of my brain that there was something more going on, but I did not tell a soul I felt there could be something very wrong. I mentioned that I was worried to a few people, but I did not reveal the degree of my worrying. Seth even mentioned that he thought it was a seizure, but I tried to shrug it off, ignore it and put that worry in the outer most part of my head where it was hard to reach. I did not want to talk about yet another illness this Robie family might potentially be handed to deal with. I shut down communications via Facebook so I would not talk about it to the masses. I felt that maybe I was being irrational in my thinking. I mean really, how many times can lightening strike the same family within a 3 year span? We had already filled one full hand. Could we really be starting to work on the second?

The greatest worry about the shuddering attacks, which we now know are seizures, was that it could be infantile spasms. Infantile spasms can cause major brain damage leading to significant developmental delay and permanent intellectual impairment. The prognosis is not good. I did not think that this was what was wrong with Keira because she is on track and even ahead in some developmental milestones. Most infantile spasm patients are delayed at onset. However, it was very hard to find other forms of seizures written about on the Internet because infantile spasms are the most frequent cause of them in children her age. I did finally find Benign Myoclonic Epilepsy, but you don't know for sure until you have an EEG and an MRI.

As of Sunday night,early Monday morning, I decided it was time to get it checked out. The seizures were happening up to 80-100 times a day, came in three's and her eyes were rolling up in her head. They were clearly getting worse. I did not count them before then in my attempts to convince myself (which I really never did) that they were simple shuddering attacks. I got one of them on video and called our Pediatrician on Monday. We got an appointment on Tuesday. The Pediatrician saw them multiple times during the appointment and talked to the Neurologist right away while we were in the office. They scheduled the EEG for the next day (Wednesday), which clearly showed the myoclonic pattern.(A huge relief for us) We were given the diagnosis and sent to the hospital for observation, to start medication (Keppra) and get the MRI. Once we had the MRI done and they did not find any brain abnormalities the diagnosis would be set in stone. Thankfully the MRI was unremarkable.

We are happy with the diagnosis. Of course, we would rather her not have this or take medication, but in the grand scheme of things it is minor. We are on to the second hand and fully expect to add more fingers to it. We do hope that the pace of filling our hands will slow down. I still worry about her development and about the seizures, but I would be worrying about her development anyway. I was right on top of it before and will continue to do so. Keira is happy, otherwise healthy and the easiest baby I have ever known. A huge blessing to our family. :)

Here are pictures from our adventures. She was quite a ham in the hospital and all the nurses/doctors were drooling over her. They could not get over how good she was.

http://www.flickr.com/photos/s2k3robie/sets/72157624385955349/

This form of Epiliepsy is written about in detail on the website: http://emedicine.medscape.com/article/1181649-overview

"Benign Myoclonic Epilepsy of Infancy
Of all the myoclonic epilepsies, benign myoclonic epilepsy of infancy (also known as benign infantile myoclonic epilepsy) is distinguished by its appearance early in life and its favorable prognosis. This belongs to the group of primary generalized epilepsies and is probably the equivalent of juvenile myoclonic epilepsy. Since its first description by Dravet and Bureau in 1981, many other cases have been described.

Epidemiology

In 2005, Dravet and Bureau made an updated review of benign myoclonic epilepsy of infancy, in which they mention 120 cases.5 The syndrome occurs in 7% of children with myoclonus and 2% of epileptic children aged 1-36 months; 0.39 of epilepsies that begin in the first 6 years of life are benign myoclonic epilepsy of infancy. The male-to-female ratio is about 2:1. Age of onset is usually between 4 months and 3 years.5 However, as reported by Rossi et al in 1997, later onset up to 4 years and 8 months is possible.6

Genetics

The genetics is unknown. In 78 cases, family history of febrile seizures was present in 17% and history of epilepsy was noted in 27%.

Clinical symptoms

Generalized myoclonic seizures occur in otherwise healthy infants, some of whom (about 25%) have a history of isolated febrile convulsions. Myoclonia involves the axis of the body and limbs, causing head drops, upward and/or outward movements of the upper limbs with flexing in the lower limbs, and possible rolling of the eyes. Seizures vary in intensity from severe forms (eg, causing the child to fall suddenly) to mild forms (eg, eye closure). Episodes are brief, lasting 1-3 seconds. Less commonly, episodes may be repeated up to 10 seconds, especially in older children. They do not occur in clusters and are not favored by awakening, but rather by drowsiness. Alertness may be slightly reduced with repeated seizures. The seizures are not associated with other seizure types such as absence or tonic seizures.

In a subgroup of patients, myoclonic jerks may be triggered by tactile or sudden acoustic stimuli, referred to as reflex benign myoclonic epilepsy of infancy. These may or may not be associated with spontaneous jerking. Although some authors have tried to distinguish between reflex benign myoclonic epilepsy of infancy and the classic form, Dravet and Bureau did not think such a distinction is necessary in their 1996 article.

Electroencephalography

Findings on interictal waking EEG usually are normal for age. Spontaneous spike-wave (SW) discharges are rare. Almost all SW and polyspike-wave (PSW) discharges have some form of clinical expression. Drowsiness and early stages of sleep activate generalized SW. During light sleep, they almost always are accompanied by myoclonus. The discharges gradually disappear during slow-wave sleep, as does the myoclonus. Clinical and EEG photosensitivity is present in one third of patients. Ictal EEG recordings show generalized fast SW or PSW accompanying the myoclonus. Darra et al reported on 22 patients with benign myoclonic epilepsy of infancy. They reported that the ictal EEG discharges were often focal, limited to the rolandic and vertex regions and concluded that seizures are rarely truly generalized.7

Treatment

Seizures usually are controlled easily by sodium valproate monotherapy. If seizures are not controlled, other proposed medications include benzodiazepines (ie, clobazam, nitrazepam, clonazepam) or ethosuximide. Phenobarbital has also been tried.

Evolution and prognosis

The seizure outcome is favorable. The myoclonias have disappeared in all reported patients who were monitored. In most patients, they lasted less than a year, with the longest duration up to 6 years and 4 months. On long-term follow-up, 18% of patients had other seizure types, including some with rare generalized tonic-clonic seizures.

Clinical features as well as the associated EEG findings help differentiate benign myoclonic epilepsy of infancy from both nonepileptic conditions and other epileptic syndromes.
The following are nonepileptic conditions that may be mistaken for benign myoclonic epilepsy of infancy:
•Physiologic myoclonus

•Benign nonepileptic myoclonus

•Hyperekplexia (startle disease)

•Shuddering attacks

Epileptic syndromes that may resemble benign myoclonic epilepsy of infancy include the following:

•West syndrome

•Severe myoclonic epilepsy in infancy

•Early onset Lennox-Gastaut syndrome

•Myoclonic-astatic epilepsy (Doose syndrome)

Benign Partial Epilepsy With Complex Partial Seizures

Described by Watanabe et al in 1987 , complex partial seizures often occur in clusters and are manifested in the following ways:

•Arrested motion

•Staring spells

•Decreased responsiveness

•Automatisms with mild convulsive movements

Features of benign partial epilepsy with complex partial seizures include the following:

•Family history of benign seizures (often)

•Normal development prior to onset

•Onset at 3-10 months usually (ranges to 20 mo)

•No underlying disorders

•Normal findings on interictal EEGs

•Good response to treatment

•Normal developmental outcome"

We have been busy Beavers

2010-07-11T22:23:00.001-04:00

Sort of. At least as busy as you can get with an 8 month old in tow. Seth had the last week off and we went to China Lake, Nanies Beach and Toy Story 3. In between all that, Kailyn hurt her eye, the kids swam in the pool, played make believe, made cakes and brownies and went to swimming lessons. It's hard to do a lot with the baby since she loves her two naps a day, which are typically around two hours. We can get away with one day messing up the schedule, but two days and she is toast. Sam can't handle too much either. He was in bed at 6pm this evening. Kailyn is at that magic age where she can pull it together now whether tired or not. Sam still has melt downs.
The summer is flying like all the others and the older I get the faster they go by. The kids start back to school on August 30th, which means we will have to start looking for school supplies soon. They have not talked about school at all. We did order new backpacks already. Both of the rolling backpack zippers broke that they got from LL Bean last year so back they went. They are getting new Deluxe ones that should hold snow pants and shoes in the winter on top of all the other stuff they tote back and forth.
Here are a few pics from our adventures. Others can be found in the flickr photo stream in the bottom right hand corner of the blog
.

CRAZY Daisy

I told Kailyn about this today

2010-06-28T23:29:00.002-04:00

The Artificial Pancreas
http://www.usatoday.com/news/health/2010-06-28-diabetes28_ST_N.htm

She was excited beyond belief and asked, "so I could eat and drink and not have to prick my finger all day". Not even flinching at the fact that she would still have to wear a device and still have to prick, but the possibility of eating without thinking about it was thrilling to her. I am more excited about the catching the highs and lows and tighter blood sugar controls. I told her because it is going to be available in a few years (it will become a reality) and it will give the walk she plans to do in the fall even more meaning. JDRF is the non-profit doing the research for the technology.

Houston, I think we have a compromise.

2010-06-28T22:48:00.004-04:00

We have been talking about the inevitable with Kailyn for a long time. Her sister is going to share her room with her. She has big dreams of moving into our room, but I am not sure if it will ever happen. She even made a king size bed in the middle of the room over the garage and said that her father and I could sleep there. All we would need to do is put some wood up and get a rug and we would be good to go. LOL

We could make the playroom into a bedroom, but no one wants to move down there. They are more than willing to let Keira have that room (willing to throw her to the wolves), but I am not too keen on having my baby on a different floor than me. She sleeps next to me in a Pack and Play now. Moving a room over would be the first and only logical step.(for me at least)
So, Kailyn and I were looking at Bunk Beds. She, of course, wants the one for $1,000 from the Pottery barn. We get those lovely magazines all the time and I oooh and ahhh at them as the kids shout out what they want.(in their dreams) Well, today I decided to check out the Ikea website. We are about 2.5-3 hours from the nearest store, but from what I hear, it is well worth it to go. Even if you just go to look. Kailyn balked at the metal frames at first and said she liked the Pottery Barn ones much better until she stumbled upon this:

Its a double bed loft with a desk and a full shelf above the desktop. (hard to see) All we would need to get is a chair (in her words) I also told her we would need to get a mattress. Here is a link: http://www.ikea.com/us/en/catalog/products/S59872897
She could keep all of her belongings under her bed and have even more storage for knick knacks under the desk. Kailyn likes her "stuff". Keira would not be allowed to store anything over there and would use the bed and shelf Kailyn uses now and the desk would go into Sam's room. They both would have their own dressers as well. There would be a virtual line on the floor in the room and in the closet. Keira would have to cross Kailyn's line to get to her side of the room, but I am sure Kailyn will let her have an easement. Sounds fantastic to Kailyn for now and I probably will get the usual "I don't want to share my room" with the new plan in the morning. However, we will do our best to make sure she still has her space and I think this is a wonderful idea she came up with. I think telling her it is made in Switzerland was the icing on the cake. ;)

We are spoiled

2010-06-28T20:56:00.002-04:00

We get yummy home baked meals from Grammie a couple days a week. This is very helpful because I am still recovering from child birth(yes, I know, she is 8 months old). Right now we get a fish and a Mexican meal just about every week. Tonight was beef Enchilada's from a Mexican cooking light magazine with corn on the cob and rice and beans. Keira had her first stab at rice and beans tonight and LOVED them. This was after she begrudgingly ate sweet potatoes with rice in it because she was so hungry. She has had plain rice, but not with beans mixed in. Now that she has had crackers and other things she demands to have the good stuff. I swear she was using her own sign today to tell me she wanted crackers and not the sweet potatoes. She kept looking at me opening and closing her thumb and finger just like she does when I give her a cracker. Once she gets that pincher grasp down I see almost no baby food going into her mouth. (If any) Right now she is staring down her Daddy's Shipyard Summer Ale. Sorry, its not happening kid!!!
Thanks for all the yummy food Grammie!!!

Milestone in Artificial Pancreas

2010-06-26T08:37:00.003-04:00

I thought this was blog worthy.
This is not a cure, but it would mean a much better quality of life for Kailyn
and other Type 1 Diabetics like her. Its the closets thing to a cure and a major breakthrough.
I need to research to find out when they are going to have these potentially ready so we can be first in line. Hopefully it happens before the teen years.

http://bit.ly/c4cQmo

I guess we need to get our walking shoes broken in for the JDRF walk in September so we can raise money and get this project on the road.

VBS High Seas Expedition

2010-06-25T22:05:00.003-04:00

The Kids LOVED It and Sam Did not realize it was going to end. :)

They are already talking about next year.

Here they are practicing their moves.

ME:"You can not bring guns (pretend ones) to church Sam"

2010-06-24T21:27:00.001-04:00

SAM: "Why can't me bring guns to church?" ME: "Because God does not like you to shoot people with guns" SAM: "Dis is not a gun, Dis is a phone" ME: "You can't bring it to Bible school no matter what it is" SAM: "Oh, I didn't know dat" "I shoot da bad guys with the gun and God does not like the bad guys" ME: "You are not allowed to have a gun or shoot bad guys, only police can and they try to bring them to jail first". SAM: "Dis is a phone, I no want to talk about guns anymore." ME: "breathing a sigh of relief"

He made a gun out of some plastic connector toys we have and has been playing some sort of bad guy game with Kailyn. Pretty sure this has been brought on by the Toy Story movies they have recently seen in anticipation of seeing Toy Story 3. I guess I am going to have to drill in what is real and what is pretend with guns. This has been a very abstract week for him and I have a lot of explaining to do to help him understand what is real and pretend. Between Toy Story and Vacation Bible School I think he is a little confused. He asked me if "The Real Housewives of New York" was real while he walked through the room. I said yes. If he catches me watching the RHNJ I will tell him they are not real. I guess that's a start. lol

VBS was a success!!!!

2010-06-21T17:26:00.002-04:00

They loved it and are exhausted. Its called "Expedition on the High Seas". Both want to go back tomorrow, but Sam said for a minute he did not because it, "made him too tired". I think playing in the pool and getting up earlier than normal made him tired. Apparently, they do not stop at this camp and move through station after station. Eight kids out of 11 from his preschool class were there and many kids that Kailyn knew were there too. One of the girls in her "crew" is going to be in her class this fall. Others that are going to be in her class this fall were there too. They put her and one of the other Type 1 Diabetic children in the same crew. He is a boy that she has never met, but the Mom was there to keep an eye on things. I don't think he goes to Gorham because there is only one other boy in the 2nd going to 3rd grade class that has T1D and this was not him.
The plan was for Kailyn to call me on her cellphone at snack time. She brought her Diabetes bag and all her supplies. If she was low she was to tell the teacher and call me as well.
I made her snack and put the grams for her on a piece of paper.
She called, I walked her through the pump and then
click......She hung up on me. I did not even have a chance to ask if she was having a good time,
but I guess that was my answer. :)

Keira says No and Hi

2010-06-20T22:53:00.002-04:00

Keira says Hi

2010-06-20T22:50:00.003-04:00

VBS at the Methodist Church Tomorrow

2010-06-20T21:51:00.000-04:00

Kailyn is nervous. Sam is not. Sam has a friend that he knows is going. I think Kailyn is more nervous about the Type I Diabetes aspect of it more than anything else.She is worried about who will take care of her in case of an emergency.There are going to be 2 other TID kids there though and one of the kids mothers is working at it. I am hoping that once she gets there and sees that she knows other kids (which she should with 200 going) she will feel better. She has her cellphone and I got more minutes to put on it so that she can call me at anytime. I think we are both a little nervous. I am nervous because it is the first organized thing she has done without me being there and I want it to be a success. We both need to break that barrier at some point and going to a church camp for 3 hours for 5 days in a week sounded like a good start. Here's to hoping that she loves it!!

The Swingset and pool drumroll.........

2010-06-20T21:45:00.002-04:00

Above is what my kids call supreme summer fun.

The bare patch is where the tent that broke was. I might put the toddler slide and playhouse there.

This is what is inside the fort under the slide deck as I type.

All of the above was made possible by Grampy Jock.

Thank you Grampy!!

Technology from my perspective.

2010-06-20T00:32:00.002-04:00

My kids think I lived in the "olden days". When I was the same age I thought the same thing about my parents. My perspective now: when they were growing up does not sound as out of whack as it did when I was little. In fact, when you think about it, the only difference between their generation and mine was the hair styles, music and political movements. In the realm of technology we have advanced together.

I mean, they had TV, record players and radios. All of the modern conveniences have really happened majorly since I have grown up, become and been an adult. Of course, if they were alive when the car and planes were invented we would be talking a different story, but they were not. Here is a list of the changes that have happened since 1975. There are many more, but I would be writing forever.

Music:
We still had records
8 track was on its way out and never got really big to begin with.
Then the cassette tape
Then the CD
and now the i-pods

Phones:
I grew up with a rotary phone
touch tone phone
cordless phone
big ass cell phones with no reception
smaller cell phones with no reception
cell phones with reception
and now the i-phones

Computers:
We had a typewriter with white out eraser for papers
Then a huge computer with a floppy disks that you
had to use a C/: prompt for
Computers without floppies as slow as molasses with drumroll......
Spell Check!!!
THEN the Internet came when I was in high school, but
at the end of it and almost impossible to log on with dial up.
I got my first e-mail account my Junior year of college
Then still slow computers with DSL or phone connection
Now fast computers with instant connection

Books:
Libraries or store for books
Books on Tape
Books on DVD
Now the Kindle for books, unless you are
not tech savvy enough or do not have enough money for such a luxury.

Movies:
Once a year they played "The Wizard of Oz" on TV and everyone in the US watched
Same with "Its a Wonderful Life" etc..
Then VHS to watch videos. It was huge that we got one and we were one of the first. Had to drive 20 minutes to get the movies.
Then the laser disks as big as records. They did not last long. Can't even remember the name.
Then DVDs
Now "blue ray"

Cooking:
I remember getting our first microwave and my Mom talking about cooking in it.(like from scratch)She never made meals in them after a few attempts. It did not taste the same and was the same amount of work. Silly Mom, Microwaves are for reheating meals or for heating up microwave meals.

Digital:
Digital coffee makers
Digital alarm clocks
Digital Clocks in general.
I don't know how my in laws would function without their little digital alarms.

Television:
TV antennas
Remote controlled TV antennas
Cable TV.
Direct TV
Cable TV with thousands of channels
3 news networks -now there are 300 news networks
TV went off the air at night- I remember them playing the star spangled banner on Sunday nights before the TV went fuzzy "gasp" Now its 24 hour TV.

Diabetes:
Insulin shots
Novolog and Lantus
Then the Insulin Pump and hard to use Continuous Glucose Monitors.
I can't imagine what it was like to be Diabetic around the time I was born.

I could go on. But, you get the picture. I can't imagine what technology has in store for us in the next 20 years. I'm excited!!!! Yes kids, I did live in the "olden days", but we did have heat and electricity.

ps: I love living in the modern days though. I can only take so long without the net, tv etc...

The Last Day Of School

2010-06-16T22:59:00.001-04:00

Was not what I expected. I expected to have my bubbly girl get off the bus bursting with excitement because she was done with school for the summer. "No more pencils, no more books, no more teachers dirty looks" does not apply to Kailyn. She loves to draw, write, read and her 2nd grade teacher Mrs.Carlson. She excitedly started to riffle through her book bag to show me all of her treasures that she brought home for the last day. Her teacher gave her some presents, but one of the most treasured one was a card personally written to her with a message inside from her. The teacher had her goal for reading books for the summer inside that card and she was supposed to keep it to remind her of her goal. She got someone else's by accident. It was a boy's card and she is clearly not a boy. Tears immediately began to flow. I told her that I would call the school and try to reach Mrs. Carlson and everything would be OK. I did finally reach Mrs. Carlson a few hours later after an hour of crying from Kailyn and she said that she would fix the problem. Kailyn would get her original card or a new one. This seemed to satisfy Kailyn, but before she went to sleep she uttered. "I don't want to go to Village School" one last time. We will be doing a lot of visiting school before it officially opens this year. Luckily its behind our house.
We did end the day with an end of the year play date blow out. Complete with a late night with the Warehams that included pizza. Hopefully, when she wakes up late tomorrow, she will realize that school is out for the summer. In the mean time, I have to check some blood sugars in a few hours because she has been running low quite a bit today. A lot of physical activity.

A List Of Good Things That Have Been Happening Or Have Happened.

2010-06-15T23:25:00.002-04:00

-Sam went to Kindergarten Step-Up day, was not nervous and his teacher was nice and bubbly. She loved Keira, but she is not getting her. ;) I did not know her before, but was pleased to meet her. I was also not nervous. Not even when Seth's ex-girlfriend introduced herself to me and proclaimed that her son (who seemed to be a bit out of control) and Sam would be friends. Seth thought about requesting a transfer when he heard the news for a minute, but then decided he would wait to see how things went. If I know Sam (and I think I do) he will stay away from the trouble maker. He gives us trouble, but is a stickler for rules.
-Kailyn got a good teacher for next year and was excited to find not one, but 4 girls that she is friends with in the class. Bonus was that her life long BFF Izzy, that has gone to White Rock, will be in her lunch and recess.
-Keira is pushing up off the floor doing push ups and pushes up off her legs. She also sits unassisted easily, says Hi appropriately, waves bye and hi appropriately, knows her name, my name and Dadda's name and can say Momma and Dadda.
-The kids are loving their new play set. Sam's friend and his brother came over yesterday and played on it and tomorrow the Warehams will come. It can withhold 6 children totalling over 300 pounds.
-I finally ordered some clothing so I will have more than 2 summer outfits.
-School ends for the Summer tomorrow
-All of the kids (including Kailyn) are asleep right now. Kailyn has been a bit excited and very hard to get to sleep the last two nights.
-We, I mean I (cough cough, Seth fell asleep) got to watch a Movie. "The Blind Side" and it was good.

I GUESS I HAVE BEEN TAGGED -----AGAIN

2010-06-15T22:48:00.002-04:00

I did this almost 2 years ago and I wanted to see what has changed:

8 Things I am Passionate About:
Samuel
Kailyn
Seth
Keira
Walking (even though I have not gotten to do it often lately)
Diabetes
My Health(getting healthier)
Getting my home organized so that everyone can be healthier.

8 Books I Have Read and Enjoyed:
Slummy Mummy
My Sisters Keeper
Baby Proof
Poisonwood Bible
Grapes of Wrath
Such a Pretty Fat
Jaime Oliver's Food Revolution
Louder than words

8 Words/Phrases I Say Often:
I Love You
Sam Bam
Sweet Angel
Seth can you...
You are going to drive me to drink (under my breath)
I am so proud of you
You need to test your blood
Go to Bed

8 Things I Want to do Before I Die…:
Travel the world (only certain places though)
Be a good photographer
Watch my kids grow up
Be a grandparent
See Cancer cured
See Autism cured
See Diabetes cured
See our Nation less dependent on Oil.

8 Things I Learned This Past Year:
No one is perfect
Being really close to dying is painful. Blood clots/PE. (even more than having a child)
Expect the unexpected
How to use the pump for Type 1 Diabetes
It's OK to take care of myself
Wonderful things do happen
I have enough love for three children
I do not want anymore kids- :)

Eight People I want to Tag: No one, just wanted to reflect on what has changed.

2nd grade send off

2010-06-14T21:26:00.002-04:00

It was an ambush. I guess they call it that so parents don't make a big deal about it. However, you show up, get a program and the children all get recognized with bell cords and then sing a song called "Friends Forever". I am not a teary kind of person, but this one put tears in my eyes. They sang it excitedly and knew it like the back of their hands. A very funny aspect to the ceremony was that two of the 7 teachers were Seth's when he went through the school system. One was his second grade teacher and the other his third grade teacher. He never mentions these things until he sees them. :) I wonder if they intentionally do not give Kailyn to any of the teachers he had? lol Of course, I was not prepared and ended up NOT bringing my camera. Heck, I am lucky we got the four of us in the car and there on time.
I want Kailyn to move on because she is ready academically, but her support system at Narragansett is unbelievable and her teacher this year was exceptionally phenomenal. Seriously, you can not get better than her. I wish I could package her up and send her off to Village School with the 2nd graders. Her and her nurse. I won't be going to the school as much with Sam there because he is rarely sick. Maybe I should tell him to fake sick so that Mrs. Greatorex and I can shoot the breeze at least a few times next year? The excellent news is that both the nurse and Mrs.Carlson are going to Village school in a year when the new Gorham School Systems reconfiguration kicks in to three K-5 schools. I just wish that it would kick in this year so we did not have to lose Mrs. Greatorex for a whole year. She has gotten us through some really rough days and you could not get any better care for your child than her. She is superb.
Tomorrow we find out who the kids will have for teachers next year. There is only one K teacher I would rather Sam not have, but if he gets her we will hope for the best. For Kailyn ,I told Mrs. Carlson I want a teacher JUST like her. lol I have been told that all of the third grade teachers are good so I am not worried. Plus, I have NO clue who any of them are. No info on the teacher=no anxiety for me.
So, Wednesday is the day I am officially a Kindergarten and 3rd grade parent and our summer of fun begins. Swimming lessons, Vacation Bible School (yes you read that correctly), Basketball Camp, Visits to Nanie's beach, Camp at China Lake, Swimming in our pool and playing on the new play set and Play dates.

My baby is sick

2010-06-08T17:46:00.003-04:00

She was up crying all but 5 hours last night.
Had a fever that reached 103.3 degrees
Eyes are very runny and she is all stuffed up.
I took her to the doctor and she did not find any outward signs
of a reason for such a high temp. In a baby as young as her
they like to check for a UTI just in case and if you are not
up to date on your vaccines then they give them IV's and
take blood. (Keira had a bad reaction to the Prevnar vaccine so we are waiting on that one)
I am pretty sure she just has a virus, but to help
cover the Doctors tracks and mine (just in case) we did the
blood work. I am pretty sure Keira was baby swearing
at one of the phlembotomists while they were doing it.
She was looking right at her and doing her baby talk while crying.
I am willing to bet she has the same illness that Kailyn had last week that made us (I mean her) miserable. Sam had it, but you could barely tell.Pretty sure we will get a call saying they found nothing tomorrow.
Oh well, welcome to the medical world Keira.

We forgot to feed a kid!!! Just not any kid.

2010-06-08T17:35:00.000-04:00

The one with Type 1 Diabetes. Now, in our defense we had a hectic night and even a more hectic morning, but still. I was up for a good portion of the night with the 7 month old. Right before Seth left for work he woke me up and said he was leaving. Kailyn and Sam were already dressed and K was even outside on the new play set. Anyway, I sat in the bed until the time turned exactly 8am because that is when the pediatricians office opens. The kids were going to the Dentist at 10am and I had an appointment at 9:30am. Grammie had volunteered to take the kids to the Dentist so that I could go to the Doctor alone and I would meet up with her and take over. I called right at 8am. The Doctors office wanted me to come in right away. So, I scrambled to get the baby and I a bit presentable and told the kids to head over to Grammie and Grandpa's house. I told Kailyn not to forget her Diabetes bag. I called on my way to the babies Doctor and canceled my doctor's appointment. The baby had to get a catheter and her blood taken for the high fever and no outward signs of a cause besides a cold. (a whole other story)
After I went to the babies appointment I went and gathered the kids from the Dentist and off we went to bring Kailyn to school. While we were in the Dentist's office she had a low and we had to recheck on the way to school to make sure she was within range. She then declared she was hungry and I told her that she could have a cheese stick or try and wait another hour. She flipped out (hunger rage) and cried only saying right before we drove into the school that she had not eaten ANYTHING that day. I informed the nurse upon dropping her off curbside and asked her if she could feed her. I thought the whole "I'm hungry" thing was an attempt on both kids part to get fast food (which we do not do).
I still don't know if its true and could easily go and find out by asking her father and checking her pump, but I am enjoying the quiet that is called upstairs in my room with the door locked for a while. I am too lazy/tired (whatever you want to call it) to go down and find out.
Hoping for a less painful night for the baby so everyone gets fed in the morning.

It's been a long time and the playset

2010-06-05T21:25:00.008-04:00

First of all, it has been a long time and a lot has happened since I last blogged. When I first stopped blogging I was sick. Really sick. I had my gallbladder out and found out I was pregnant. PREGNANT. Imagine trying recover from gallbladder surgery and having morning sickness at the same time. Not pretty. Out of that pregnancy came our third child and I had to rename my blog in her honor.

Keira came into the world on October 19, 2009

She is perfect in every way and seems to be the amazing last piece to this families puzzle.

We are still learning her personality, but at this point she seems a little bit more laid back than her older siblings and enjoys watching them and their antics.

Kailyn still has Type 1 Diabetes (until there is a cure) and Sam still has the label of autism, but we feel as though he is outgrowing that even with some quirks that need to be worked out. I just found out that he will be going to Kindergarten in the pm every day in a regular classroom without any supports at first.

We feel blessed to have what we do and life is pretty normal until an emergency arises and then we are reminded that we have a child with a chronic illness. It is hard to deal with Diabetes sometimes, but it does not consume us all the time. We are on autopilot and just do what we have to. We talk about numbers, site changes, ketones and lows just like we would making a grocery list. Sounds frightening to some, but it is our new normal. People mention to me frequently how it is "hard", but I think raising kids in general is hard. We have to feed, clothe, change diapers, help with homework and do our daily Diabetes care. Don't get me wrong, there are hard days, but those are getting easier to deal with and the really hard days are getting far and few between instead of every other day.

The Play Fort pictured is what Grampy and Aunt Alice have been working on tirelessly for the kids. The instructions said 6-12 hours to put together. Well, I have counted it up and it has been 18 hours and counting. It is STILL in progress. The box LIED.

Swimming 2009

2009-06-16T17:55:00.004-04:00

We finally got some sunny weather so the kids have been in the pool for the last 3 hours. I hope their enthusiasm for the pool lasts for the summer. They are going to take swimming lessons for 6 weeks, three days a week, starting in July. They INSISTED that I take pictures and put it on my blog. So, here you go!

Gallbladder

2009-02-21T15:41:00.002-05:00

Apparently, I have stones in mine. This week I started to get pain that was in the typical front area, but it also permeated to the back and I thought I might have an ulcer so I went to the hospital. The hospital sent us (My MIL and I) away because they said if my primary was already treating me they could not do much, so I called my primary and got in that day. I had an ultrasound done yesterday (the next day) and there were a bunch of small ones that were near the opening to the duct and this is what has been causing me pain. All these months I thought it was anxiety and it was gallstones. I am not sure what the course of treatment will be, but from what I read it might be surgery unless I want to wait it out with the pain. I won't talk to my doctor until Monday though because he is not there until then. I was hoping it was just an antacid med change that needed to be done, but oh well. Maybe they can fix this and I won't have this pain that I have had for months anymore.

6 in 6 years

2009-02-21T15:24:00.007-05:00

We had a cousin party and took a picture for Nanie and Grandpa's Anniversary. It was wild and crazy here last Monday, but the kids had a lot of fun. All of the kids are 6 and under. SO, my parents had 6 grandchildren in 6 years. What a busy time period for our family. Kailyn is 6, Thomas-5, Samuel-4, Kyleigh-2 1/2, Graham 14 months, Adam 5 months.

I went Ice Skating

2009-02-16T12:22:00.005-05:00

For the first time in 12 years today and I think I did pretty well. Its like riding a bike. You don't forget how. I think I was more nervous about falling though. It was good because it let me help Kailyn learn how to skate better and she is starting to get really good. We went right at Kailyn's school so it is very convenient to get too. About a mile. Sam gets really tired out quickly. I want them to enjoy skating like I did when I was a kid and apparently I still do enjoy skating because I had a lot of fun. Maybe we will get to go another time over vacation. Here are some pictures per request of Nanie (my Mom) she wanted to see me in my birthday present. (the ice skates) Thanks Nanie!!

Kailyn has her own blog

2009-02-14T16:27:00.004-05:00

If you want to be added to the readers list this is the blog address. Only approved people can read it. So if you want to be put on the approved readers list e-mail me and I will do it. :) She has been begging and begging me to do this so she is thrilled to say the least that she now has one.

http://superstar-kailyn.blogspot.com

Kailyn got her ears pierced today

2009-02-14T15:59:00.002-05:00

I always said that when Kailyn asked to get her ears pierced that is when we would do it. Well, she started asking this week and we used some of her money to get them done. She was so excited and barely flinched. The girl in front of her would not even go and she was at least 3-4 years older than Kailyn. I warned her that it would hurt for a second like when you get your blood drawn. She agreed that is how it felt. She got pink diamonds. I tried to convince her to get regular diamonds because that is her birthstone, but she is my pink girl. :)

Happy Birthday to Me

2009-02-12T18:08:00.006-05:00

Kailyn did it again. Planned a wonderful surprise party. Complete with pizza, chocolate mouse, cake, presents and roses. She also made beautiful cards and Sam drew me a picture of a person. They are now about to get in the tubby to wash the colored frosting off of their bodies. Thanks to Grammie for helping her make it all happen:)(probably Grandpa too :) ) It was wonderful. She started my day off with breakfast in bed. 3 mini heart peppermint patties with water and a card. She said she would have gotten me o.j. , but she could not reach it. ;) I had a wonderful birthday.

We were going to go ice skating

2009-02-08T12:58:00.004-05:00

But, much to our dismay the temperature went above freezing and the pond was covered with water. We were so excited to use my new skates, but we know that the pond will refreeze because we have plenty of winter left to go. So, instead we went tobaganning. We have not been in a couple of years and the kids quickly got equally excited about doing this. It was a lot of work going up the hill. Quite a work out, but the kids got to get a ride on snowbiles with things that had sleds on them to pull them in the back. Yet, another exciting experience. Here are some pictures.

Kailyn's first top tooth is gone

2009-02-06T18:10:00.002-05:00

She just pulled it out a few minutes ago and is SOOOOO excited. She had been working on it all night and I am sure she worked on it at school too. I kept telling her she was not allowed to lose her top tooth, but she did it anyway.lol No matter what I say they seem to grow up anyway. In fact, in 2 1/2 months she will be
seven. Seth and I will have a 7 year old!! Hopefully she will fall asleep at a reasonable time so the tooth fairy does not have to stay up too late. Here is a picture of Kailyn's new look.

We ordered the pump today. :)

2009-02-03T22:29:00.004-05:00

Kailyn is so excited. They called to confirm and asked what color. They had black, blue, clear and purple. I figured purple would be the best bet and I was right!! She says she, "can't wait to throw away the needles". I told her we would have to have them for back up and she was not happy(for a second). Oh well. Once we get the pump.(On Friday) We will make the appointments to get her started. It is a very long process with a lot of appointments, but she says she is up for it. She wants to shop for skins and belts, but we need to see how it all works and what she gets with it first. Click on the link to learn more if you want to. Some of you are going to need to read up ;)
minimed pump