In a Sing Songy Voice

Kailyn-"I have a poof like Snooki"!  Me turning my head quickly. "Where did you hear about her? K-"I saw her on Cake Boss" (PG) One of her favorite shows she is allowed to watch. She also learned about the fist pump in that episode. I have seen it and it was fine.

Kailyn has been trying out new hair styles. Earlier this week it was a pink hair streak with glitter. We went to snip-its to get their hair cut (Her and Sam) and I owed it to her from a LONG time ago. Nothing I am allowing on a regular basis. She apparently got a lot of compliments on her pink/glittered streak (Including teachers), which did not help with me telling her it had to be washed out.(which she did do).

She got her hair feathered like all the other girls in the school. (Not the 80's type of feathered. An actual small hot pink fake feather) But, looked a little too Cyndi Lauperish for my liking today. She was so proud of her hair style that she did all by herself (a modge podge of a back pony tail, with the feather and the front of her hair hanging down. It was tucked behind her ears so her earrings would show) and her outfit. Maybe it's the growing up and finding her own style thing that bothered me more. She did not look bad, just old!! I liked when I could lay out her adorable little dresses and tights to wear without her contesting my choice. Like she never had an opinion. ;)

On the other hand, she did ask me, "I thought Snooki was the one that was voted the sexiest woman alive?"-Haha  Oh the joys of trying to keep your tween naive. lol

Things I never thought I would do as a parent.

1. Do an emergency G-tube replacement when my 2 year old (who has Epilepsy/Autism) decides it would be fun to pull it out. She did this tonight. I managed to shove replace the new tube back into her stomach averting an ER visit and/or new surgery. Some parents apparently can't stomach this. I can stomach doing it myself way more than going into the ER for yet another visit.

2. Hear my husband say: "Well, I guess it's good that she is exploring more things". Trying to look on the bright side of the incident. He was not the one that had to frantically try and put it in. He did help hold her down and asked what we were going to do about him going to work if I had to bring her into the ER.

3. Watch my almost 10 year old excitedly get dressed at the prospect of going to the ER. She kept saying to me that I could not get the tube in. She was bummed when I managed to replace the tube because she was ready to go. I was not going to let her come anyway.

4. Have to get my child's blood drawn to check medication levels. I get to go do this tomorrow. Her little hand has started to shake. A side effect of the seizure medication. She has had more blood drawn than any 2 year old that I personally know.

5. Have grown men run around my house 2.5 hours a day, 4 days a week, to play and teach her using ABA therapy. I appreciate it and know it works, but never thought that my parenting her would not be enough to help her learn to talk.

6. Replacing a pulled out G-tube. She pulled the balloon through her stomach (ack!!)
This is not Keira, but it looks exactly like hers.

I had to push the stem through the hole into her stomach. Then, using one of the external support openings, I put 5ml of water into it to blow up the balloon. Hopefully, this next one will stay put. This was actually the second time I have done this. The first one was because it had been in for a while and it was time for it to be changed.

7. Wonder why I did not become a MD or a Nurse. I actually never ever had any thoughts of doing this. It grossed me out thinking about it. But now, I have no aversion to needles, blood, or gastric juices etc... I was adamant that I was going to be a teacher and have my degree in that. But man, I have done more than my fair share of nursing/researching and diagnosing since becoming a parent.

8. Clean up bunny poop and chase after a dog. I am not an animal lover, but the rest of my family is so I lose by default. ;)

Baselines are done and ABA has officially started!

Excuse my horrible video, but she moves around A LOT! I am really just bad at videoing. She is supposed to be showing me her mouth by sticking out her tongue and she does! Her reinforcer is praise and tickles. They are working on belly too. This is one of tons and tons and tons of programs they work on with her for 10 hours a week until she turns 3. At that point she will go to the developmental preschool program.

She is also really digging the Apps on my phone and the Ipad. The Ipad is easier for her to use. There are so many programs out there for her to try. Her favorite is Shape Galaxy and Adam's Game. I am working on trying to make a "Keira's Game" so all of the people and objects are her own. After she touches three of the right objects the last object goes across the screen in various sizes, while making music.

 

Early Intervention is the key. We have 3.5 years to work on her talking and learning in order to get her ready for Kindergarten. Hopefully, the seizure monsters don't get in the way!! She is on Depokote and supplemental G-tube feeding and that seems to keep them at bay. We go to see yet another Epileptimologist in April to see if we can get more info on what is going on.

On a side note, I will have a Kindergartener, 5th grader and 8th grader then. (ACK!!)

Vacation must have been WAY too fun.

Our kids are having a hard time getting back into the school routine. It was rough going, but we made it through the day. (I think, we still have 2.5 more hours of the day)

Highlights of the day.

Sam going to school. lol.

I am slowly getting more organized. All the piles in the kitchen are gone. An organized system of piles in bins. My trip to Ikea proved successful in the getting more organized front. I love that place!

Sam saying, "I don't say the S or L words." (Sexy or Love) I had just told Kailyn not to sing the song "I'm Sexy and I Know It". He tries to one up her when I correct her behavior by saying he does not do it. The song is on the TV all the time and I guess the kids at her school sing it. Sam heard it on the TV this am (the Today Show was on in the background while we were getting ready for school and the beginning of the song was played) He sang, "I'm the S word and I know it". LOL  I told him he can say love, but for some reason he thinks that he can't. He also does not think he can look at people kissing. He hates when people tease him about liking a girl even though he chases them at recess on the playground.

Keira stinking her tongue out at me. When you ask her where her mouth is she goes, "aah" and sticks out her tongue with a smile. She has an infectious giggle when you tickle her afterwards.

Kailyn asking me not to transport her after she falls asleep. I let her go to bed in ours so that she would fall asleep early. I could not understand what she meant? Did she not want me to press a Star Trek like button and transport her somewhere? Then my tired brain started to think harder. She meant transfer her back into her bed. Well, we will. lol

Keira officially starting her ABA in home program. They were doing baselines for almost a month. Now the real work starts. She anxiously awaits either Mark or Brendan at the door once the dog starts barking. She even cried the other day when Mark left.

Highlights of the week.

My kids going to art class for four days. They loved it and made a pretty cool masterpiece using melted crayons.

Playdates. Kailyn had a few and we had one with their cousins. They seemed to have a blast.

Kailyn whispering to me in Boston that she knew the secret of what LMFAO was.
Laugh my fat a$$ off or Laugh my freaking a$$ off.  I wonder how long she has pondered what those letters meant and if she really knows what the F is? lol  If she does, she is really good at hiding it.  If someone has told her it was not us and she has not heard it in our presence. I told her to keep it a secret and not to tell anyone else. lol   It is impossible to hide my children from pop culture. Kailyn takes hip hop classes and it is around them all the time. Especially her.

My nephew asking me if Sam, "Customizes his Beyblades". He turned four in December.

Watching Keira learn how to use the Ipad. She is really good at her shape sorting game. It really impresses her teachers. She can barely talk, but can push and move complicated pieces into their right places.

Finishing up our paperwork for the Autism study.

Going to the Boston Museum of Science as a family. My kids favorite exhibits were the dinosaurs and the human body section. They could not get over looking at the real brains.

Going to Ikea (This is much more fun without kids though ;) )

Kailyn getting her bunny. It's annoying sometimes, but she loves Holly to pieces.

Being healthy over a vacation. The last one was a bust. We literally NEVER left the house. It was nice to be able to do things over the vacation.

The Never Ending Autism Study. But, it is all good!!

Here is the info on what we did via the NESCA website



Children's Hospital Boston Research on Autism Spectrum Disorders

Children's Hospital Boston has asked our help in recruiting families to participate in their ongoing research study of possible genetic and environmental factors in the causation of autism spectrum disorders (ASD).

Participation will ordinarily require two hospital visits, the first generally lasting 4 - 5 hours and the second, about two hours, although these are estimates. Families may also choose to complete their involvement in a single, full-day appointment, from 9:00am - 4:00pm. Children's Hospital will validate parking for all participants, and families opting for the full day will also receive cafeteria meal vouchers.

Here's their information:

Autism Spectrum Disorder (ASD)
Study at Children’s Hospital Boston

· Who we are

We are a group of doctors and researchers from the Developmental Medicine Center, the Division of Genetics, the Department of Neurology, and the Program in Genomics at Children’s Hospital Boston.

· What we study and its importance

We are studying ASD and related disorders in order to better understand why they occur, increase our ability for early identification, and find improved treatments and an eventual cure. Specifically, we collect information on children aged 18 months and up who are diagnosed with ASD and their families.

· Your involvement

Participation in this study involves two research visits at Children’s Hospital Boston. We interview all immediate family members, including the individual diagnosed with ASD. The data we collect includes general facts about developmental history, family history, and environmental information. We also collect genetic material from a blood or saliva sample in order to look for possible gene changes that may be related to ASD.

Shortly after the visits, families receive a research report of our observations that includes developmental, cognitive, behavioral and social findings.

If you are interested in participating or would like more information, please contact us at 1-866-982-5826 (toll-free) or 617-355-9152. You can also email us at ASDResearch@childrens.harvard.edu.

We were also sent home with homework and $120 worth of American Express gift cheques. $40 per kid.


And a little homework. These envelopes were stuffed full of info on all five of us. Asking questions on behavior and communication over and over again in different ways. Making sure we answered the question the same way every time.  This took about 2 hours.

I also got a one hour follow up call this week filling in any questions that were unanswered and agreed to do a 2 hour over the phone interview/ research study to help them come up with a form to better identify children with autism at regular pediatricians visits.

I have a feeling I will be asked to do more.  But, the more we can do as a family, the further I hope we can get the information we need to help identify and find treatments or cures for Autism.

Plus they have to tell us anything they find in our gene pool that is treatable. This is for our entire lives. We gave them permission to use our blood for any research studies they would like. We can either decide to participate in interviews/paperwork (or not) that are associated with new studies.


This was well worth it for our family in more ways than one and probably will not end for a long time.