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!!)

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

Make a video - it's fun, easy and free!
www.onetruemedia.com

ABA therapy and Gigantic+Enormous= Ginormous

     Another day for the books and it is not over yet.  It started out with a certain 7 year old climbing into our bed moaning at 4am. I touched his forehead to see if he was hot. Very warm. I had stayed up until 1am finishing up our taxes, so I fell back to sleep knowing he would not be going to school today.  I was wondering about a sinus infection for a few days and figured that it had finally reared its ugly head.  I managed to get a shower in before getting the 2 year old out of the bed and Sam was STILL sleeping and groaning. Totally not normal for him. Even when he is sick, he usually still functions. It has to be something big to get him down. (Later on that am he vomited.) Kailyn had uncharacteristically gone downstairs, tested and asked me to get her some clothing. She usually needs to be prodded out of bed. The night before she had me convinced she was going to be staying home from school today. (Blood Sugars went over 600 and did not register on her testing kit, but we got that under control overnight. A big whole different story) But no, she woke up normal and happy to go. (Thank you God)
     Then I came to the realization that Keira was going to have her first official ABA session with her teachers today. It was in jeopardy of being canceled once again. This was the history: They canceled, we canceled, they canceled and now, WE, were going to have to cancel again. Was this ABA therapy EVER going to start?  So, I came up with a plan. It included Grammie helping and basically reorganizing her whole day. I called the ABA school and asked if it was OK if we did the therapy at Keira's grandparents house. She is there at least one time a week, if not more, and there are plenty of toys for them to use. Grammie rearranged everything (Thank you Grammie!) and came to sit with Sam for 2 1/2 hours.

Miserable Sam

Urchin Keira

     I disinfected a special spot for Grammie. Keira and I went to get to know her new teachers at 12pm after I had bleached and disinfected parts of the house at a feverish pace. I cleaned Sam up, got Keira ready by bolusing her Pedisure and her seizure medicine via G-Tube and got her dressed. I did this while she happily kept tipping over the dinning table chairs and attempted to climb up on every surface imaginable. She had a blast with her new teacher friends and they seemed really nice. They played with her so she could get to know them and get a baseline of where her development is. It will be like this for a while and then "Boom" ABA programs will be produced and the hope of seeing new skills develop will begin.

Brendan and Keira Playing

     While Keira was playing with her new teachers, I was texting the school nurse (Kailyn went down to her twice complaining about her cold trying to get out of school, but no fever), talking with the doctors office and a friend whose child was sick as well. All while answering questions and giving a little background on Keira. I feel like I should write up a history and hand it to them when they walk through the door. Providers never seem to read the paper work. Anyhow, the Dr. decided Sam needed to come in. I was convinced he had a stomach bug like his friend in his class, but they were concerned about the flu and the sinus thing. SO, after her therapy was done at 2:15, we went home, I put Keira down for a nap, Grammie left for 45 minutes and I worked on getting a very sick little boy into the car for a 3:15pm appointment. Grammie picked Kailyn up at school to bring her back and stay with her and Keira. I had Sam in the car and ready to go. We were a little late, but only by 10 minutes.  The doctor decided he had a sinus infection and may have a stomach bug on top of it. LUCKY US!! If he does indeed have a stomach bug, the roller coaster ride is about to begin! I really don't mind if we get one. It's part of life.  I just don't want Kailyn to get it. Having the stomach flu is on the top ten worst nightmares of parents of Type 1 Diabetics. It means sleepless nights and potential hospital stays.
     On that note, Sam seemed to perk up in the afternoon, but by bed time his fever was up to 101 again. He went to bed and had full on walking night terrors about an hour after he fell asleep. He said he was GINORMOUS (I find this word funny) and was screaming that he was bigger than all of us and his sickness was going to grow. Pretty deep. He came in and out of the terrors. All involving spies and him being a giant. This was all kind of funny in a weird sort of way. I have seen this before so I was not concerned. I finally thought he was in a good sleep and snuck downstairs only to have him follow me back down. His fever is down, but he still feels miserable and is sitting next to me watching Cake Boss. My kids LOVE that show.
    So, this is what I do all day. Sit on the couch and eat Bon Bons. What do other Stay At Home Mom's do with all their time? They must have a ginormous amount of free time like me.;)  FYI Ginormous is an official word in the dictionary ;)  The day is not over nor is this story, so, TBC....

PHEW!!

White rabbit, white rabbit, white rabbit!!! (superstitious good luck stuff) Yesterday was a day for the record books. The day started off rough, rough, rough, and ended rough. But, we made it through. I can happily report that my kids went off to school without a hitch this morning. A new routine has been implemented to make things go more smoothly. Sometimes things need to get shaken up! 
Anyway, today is the first day of Keira's official 10 hours a week of being in the 0-3 ABA program. She will have a teacher with her 4 days a week in our home. Mon-Thurs. During what was formerly known as her nap time.(This should be interesting) I am letting her have a little free time right now because she is going to get tired out with the constant one on one teaching. ABA is the only scientifically proven way that effectively teaches kids with Autism, but I think it can be used with kids that have other developmental delays as well. Her previous therapists do not believe in it and we did not click because of this. I know it works because Sam has already benefited from it. He was diagnosed with moderate Autism at 3 and is now in a regular classroom without supports or Special Education. He is on the "Tier" program, but I predict that is where he will stay. He is at grade level in all subjects now.
This is my hope for Keira in five years. I opened my blog back up to hopefully document her progress from my prospective. She has different challenges than Sam (Epilepsy and G-tube feeding), but hopefully we can find a way to tackle those issues in the future. Early intervention is the key and I plan to provide as much of it as I can for her. Hopefully, I will get to hear her say momma to me sometime soon!

ps: They canceled. Her teacher has a stomach virus.