On a Valentines Note

     I am pretty proud of my skills of putting together a duck taped tissue box for Valentines this am.-Ha ha. I did it in 3 minutes flat. I forgot that Kailyn's class was having her Valentines party a day earlier than the actual day. We remembered right before bed the night before. Seth went out to get the last minute supplies in the am and just happened to pick up the good kind of napkins that Kailyn volunteered to bring in. They came in an almost tissue box shaped box. I took the napkins out, used her HOT pink duck tape, wrapped the whole thing in it and decorated it with hearts, peace signs, and words of happiness using a sharpie. When she saw it she said, "Cool". She also proclaimed that her box was a lot cooler than other kids. It's the little things that make your kids really happy sometimes and for you in return as well.

    I was also able to get Keira her work space for ABA (Applied Behavioral Analysis) today.  I looked and looked online, but I could not find anything made of real wood. We have already had the fake wood type of tables and they lasted a whole year. This one is made of solid pine.  We got it at the Mill Store. It's unfinished "real" wood. Now I need to stain and paint it. I also have to convince Kailyn that her chair is not going to be Hot Pink. Maybe a Red close to Hot Pink? Sam of course wants his chair to be blue and Keira's captain chair is to be determined. The captain chair was purchased on purpose to help keep her on the chair. She gets wobbly on chairs without sides.  I do plan to stencil their names on them. ;)

My accomplishments of the day. Now for that laundry pile ;)

Autism, Epilepsy and Type 1 Diabetes Blaaahhhh

     Sometimes Type 1 Diabetes gets in the way of Autism and Autism gets in the way of Type 1 Diabetes. Today, Epilepsy took center stage. I try to keep things in little buckets and only think about one thing at a time, but occasionally that does not work.
 
     Like today. Keira had a Neurologists appointment at 10:30 and Kailyn had a Diabetes Appointment at 11:30. Then, Keira has her ABA teacher come to the house every day at 12 noon.  I had to choose and Autism/Epilepsy won by default.  Kailyn has NEVER needed a referral to the Endocrinologist nor have we had to pay a copay, but apparently we now do. I learned this when I opened a bill from her last visit on Saturday. Maybe too many children with Type 1 Diabetes are going to the Doctor so they can get their medicine and supplies to LIVE.  So, they decided to crack down on that. I mean really, a documented Type 1 Diabetic NEEDS a referral to get info on how to live and prescriptions to keep her alive? SERIOUSLY?

     The Neurologist appointment was normal. We talked about her seizures, looked at a recent video I took and talked about medication to keep the seizure monsters out of her brain.  Then came the news that her genetic deletion has now been linked to Epilepsy. She is no longer considered a Child with Benign Epilepsy. Now, she is considered to have Early Onset Epilepsy. All because of this gene mutation. I have to admit, I am taking it hard. Benign means she would outgrow it. Early onset means it is with her for life. I can't find much info on it either, which is frustrating.

     However, I am trying to take it with a grain of salt knowing that the research on the deletion is in its early stages.  And frankly, Doctors DO NOT know everything. It is a science. If they knew everything they would be able to tell us what the heck was going on! In my opinion, she has a form of Developmental Delay/Epilepsy that does not have a name yet. We go to Children's Hospital Boston in April (I have had this appointment since December) for a second opinion from an Epileptimologist that specializes in child development. They are ranked #1 in the nation. She may say the same thing, she may not. But, at least we are doing all we can to help our child meet her fullest potential in life.

Boston Trip: Children's Hospital Boston Research, Raincoat Cafe and Build a Bear.

We got up at 5am in hopes of leaving by 6am. We left at 6:10. We were going to Children's Hospital Boston to participate in a comprehensive study on Autism. Having two children on the spectrum and Keira with a special gene deletion associated with Autism made them especially interested in us. I swear the genetic researcher was bouncing up and down in her seat when I mentioned the deletion even though she already knew about it before we got there.

      A team of researchers from the Developmental Medicine Center greeted us on the 6th floor. Some Geneticists, a Psychologist, a Neurologist and a bunch of Post Docs were there to greet us. I think there were around eight of them. We checked in and they whisked us off to sign consent forms. After we got through all the paperwork we were all brought to separate rooms to be tested and interviewed for 3.5 hours. Everyone was fine with this part except Sam. At this point, I think he wished he had gone to school instead.  :) We got through the morning and then went down to the seriously busy cafeteria with vouchers in hand and a wide array of things to select from. One of Kailyn's favorite things about Hospitals is cafeterias. This one did not disappoint.

     Afterwards, we went back upstairs and they did a few more things with the kids while I was interviewed for another 3 hours. While I finished up interviewing, they took every one's blood except for Sam. We were waiting to do him last and did not tell him until the last minute because he would freak out. He did. He did not want what he called "a point" put in him even though they gave them numbing cream. We had to pin him down, but once he figured out it did not hurt he relaxed and watched the TV until his three vials were drawn. It was funny listening to them in the car talk about the blood draw. Kailyn swore that she had 5 vials taken and Sam said he had 4. Everyone in the family had three. I talked about both Sam and Keira for 6 hours yesterday. My face was bright red by the end of the day and my brain was fried. I still have a ton of homework to do that they sent home with me and more interviewing to do over the phone. They usually do the research in two trips, but since we were coming from so far we did it in one.

 This is them playing and being entertained while we waited for blood draws and for me to finish up interviewing.

 The Musical Stairs were a huge hit on our way out. We have been here a couple times and I never noticed this before.

Then off to Burlington and the Rainforest Cafe for a reward. (Or Raincoat Cafe as Kailyn enthusiastically shouted out to the researchers when we first got there) They were very good research participants. It was a long day of cognitive tests etc...and they did wonderful. Even Sam, who I hope won't be completely scarred for life about hospitals.

 In front of the fish tanks and rain.

 Sam and Keira both touching the rain. They inspected every inch of the restaurant and we survived two thunderstorms while we were there. There was a ginormous gorilla right next to our table. I thought it would freak Keira out, but no. Sam was the one that was scared and had to be convinced that it was not real. Kailyn wanted to get up and touch all of the animals.

 Type 1 Diabetes nightmare.

 Volcano cake for dessert. HUGE and thrilling for the kids. Never have had anything like it. Although, it could easily be recreated for a birthday party. ;) Keira loved playing with the top of it.

Then we went to the Lego Store and Build A Bear to get the rest of their rewards. All of them got bears. This was Keira's first bear and I named her Dreamy. She can't name things herself at this point. So, I named her this. I have big dreams and aspirations for Keira.

 The Bear Helper really made them work to put their hearts into their bears.Then, we finally left the mall. We basically closed it at 9pm. We headed home and they passed out on the way. First, Keira about 15 minutes after we got on the highway with Dreamy.

 Then Kailyn with Diabetes Bear and Candy.

 And finally Sam at 10pm, who usually goes to bed around 7:30, with Beary and Armyman Bear.

New and old Bears to cuddle with.

Keira woke up early, but Sam and Kailyn are still fast asleep. I will bring them to school when they wake up.(If they ever do) 

     Hopefully, we were helpful and will continue to be helpful in research for years to come. They will store our blood/DNA for years too and study it as needed. Our names are not on it. Just a number. However, if something major should ever come up they will track our names down and let us know. This also will help save us money on testing they wanted to do on Keira as well.

What Club do you want to join Sam?

I was asking Sam what after school clubs he would like to try and join. I said, "Would you like to do Beading Club?" His response, "Is that sort of like wrestling?" I had to think for a second and started to chuckle while I asked what he meant. His response, "You know, like how people wrestle and bead (beat) on other peoples!"

It's Feeding Tube Awareness Week and I Love a Tubie!!

     Just about every disability or illness has a week, a day or a month now and feeding via G-tube is not excluded. I Love A Tubie is the slogan for the online support group for people with children with G-tubes. Without these tubes people like my little Keira would not be alive. I am so happy I live during a day of modern technology. Looking from the outside you would never know that Keira is fed via G-tube. She gets 24 ozs of pedisure a day. She also eats and drinks regular food. We have tried to wean her twice, but this last time seizures started again .I can't remember why it did not work out the first time? Sometimes the details get lost in my brain.  She got a G-tube when she was diagnosed with failure to thrive due to having seizures every time she ate. She would drink her bottle as fast as she could to get enough nutrition to keep herself alive. So here is a montage they put together showing different families living with G-tubes.

 

And here is my little Tubie Right After getting the G-Tube in Oct of 2011

Nov of 2012

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