My name is Holly. I created this blog to document my now 4 year-old daughter Jailynn's journey with ACC, cortical dysplasia, and epilepsy. Also her brain surgery (hemispherectomy)and recovery.
Friday, July 30, 2010
new brace and hippotherapy pics
Here are some pics of Jailynn riding Snickers on Monday. She rode side saddle for awhile! she loves going fast (which is really not that fast) but it makes her bob up and down and she thinks it is so fun! I am sad thinking about the end of summertime because when school starts there is no way to make it fit in our schedule, plus I am not sure how late in the day the therapist works and the earliest we could get there would be maybe 4:30?
I also put a picture of Jailynn and Camden in her crib. Jason put him in there caus ewe were trying to convince her to get up from her nap. Camden thought it was the coolest!
And also Jailynn's new shoes, Answer2 is the brand and her hinged AFO. The shoes are huge! Jailynn has a prefab Pattibob insert in her right shoe now and she is not happy about it. She fights us a little about putting the shoes on but she is getting used to it.
Monday, July 19, 2010
hinged
We picked up Jailynns new AFO today. This one is a hinged one. I ordered a Pattibob premade orthotic for her right foot today. It was like $30 cheaper to order it online from cascade than to purchase through the orthotist. He gave me all the info. He says he will shave it down if need be. He is ordering Jailynn shoes. He was suppossed to have them already but for some reason they were not ordered. So she cannot wear her new brace yet. Once the insert comes which teh site said up to 6 days, then we will make an appointment and get the shoes fitted and insert checked. I was afraid hinged woul be huge and metal but it looks alot like a "regular" AFO. Hers has green and purple foam and straps and purple with green polka dots on the middle strap.
She also has her glasses that we picked up today. Her smile is nice and healthy. She did well with the dentist this morning. Wednesday is her 4 year old check up andd sadly shots. I feel bad but it needs to be done.
Thursday, July 15, 2010
Summer time
Just wanted to drop by and say that jailynn is loving the summer except for the super hot days when we cannot go outside. She enjoys summer school and even the bus. She has been to hippotherapy for over a month and loves it. On Monday she held on the whole time with just "lefty"! next week the therapist on on vacation so we have to skip a week boohoo. She is also having an extra Ot and PT session a week at home from great therapists from Kennedy Kreiger. She is getting so close to pulling up to stand. She can go down the stairs using her right hand to hold the banister but only with someone in front of her just in case.
Her new glasses are finally ready, we just got the call just need to pick em up now.
Her new glasses are finally ready, we just got the call just need to pick em up now.
Sunday, July 4, 2010
Hippotherapy session 3
Friday Jailynn had hippotherapy again. She had a good time. Whenever they stopped the horse he would try to take a nap though! We were able to get Jailynn to reach up and touch the horses mane to tell him to go. Her Minnie Mouse got to ride Snickers too. The therapist used Minnie to get Jailynn to do some reaching and such. I have a few more pis and a video but I havent installed my new camera software yet. Jailynn actually helod onto the food bucket the whole time the horse ate. she says "mmmm" the whole time he is chewing, so cute!
She is havinga good time going to ESY in school too. So she is getting PT, Ot and speech at school, OT and Pt at home and hippotherapy. The dance teacher hasnt called me back. I left a message about the heat and asking if there would be AC or fans used in the future.
Jailynn will be getting a hinged AFO as soon as it is ready. THe orthotist said he I am making a brace just for you. Now Jailynn always says "just for you".
She is havinga good time going to ESY in school too. So she is getting PT, Ot and speech at school, OT and Pt at home and hippotherapy. The dance teacher hasnt called me back. I left a message about the heat and asking if there would be AC or fans used in the future.
Jailynn will be getting a hinged AFO as soon as it is ready. THe orthotist said he I am making a brace just for you. Now Jailynn always says "just for you".
Thursday, July 1, 2010
DANCE
Well Jailynn finally was able to try a dance class. it was at a different dance school. Jailynn had a good time but on her own terms. She really paid no attention to the dance teacher. She was more fascinated with the environment. The big mirrored wall was a big hit. She did let the teacher put a Belle costume in her and carried around a fake rose smelling it. We may keep going for the 6 weeks to see if Jailynn will start to pay attention. I have to talk to the teacher first because it was unbearibly hot there and no fans or air conditioning. If that is always the case we cannot go it is just too hot! If this works out and she "gets it" We may sign her up for the dance school yera but at a different place that I found closer to home.
Jailynn made a new friend named Addi at summer school. They both get very excited when they see each other. The first day Jailynn went right up to her and got in her face and grabbed her hand too say hi. Luckily that did not upset or frighten Addi. Addi has speech difficulty and wears 2 AFO's and glasses so she has some things in common with Jailynn. They are so cute playing with each other. It just melts my heart!
Another hemi surgery parent that we met lat year at the reunion called me yesterday. She was looking for some info that unfortunately I didnt have. She did ask about jailynn and the family. Then she told me she remember me well and that I was an inspiration to her because of how much was going on in my life and stress... having a hemi child, school full time and a blind husband ect... and she said that I was vibrant and handled it well. It was such a wonderful and amzing compliment. It made me feel really good!
Tomorrow is session 3 of hippotherapy!
Jailynn now says "I'm mad" and "ay-yah" which i think is an expression of frustration or anger that she learned from the characters in the cartoon Ni Hao Kai-Lan that teaches chinese.
I am trying to update more!
Jailynn made a new friend named Addi at summer school. They both get very excited when they see each other. The first day Jailynn went right up to her and got in her face and grabbed her hand too say hi. Luckily that did not upset or frighten Addi. Addi has speech difficulty and wears 2 AFO's and glasses so she has some things in common with Jailynn. They are so cute playing with each other. It just melts my heart!
Another hemi surgery parent that we met lat year at the reunion called me yesterday. She was looking for some info that unfortunately I didnt have. She did ask about jailynn and the family. Then she told me she remember me well and that I was an inspiration to her because of how much was going on in my life and stress... having a hemi child, school full time and a blind husband ect... and she said that I was vibrant and handled it well. It was such a wonderful and amzing compliment. It made me feel really good!
Tomorrow is session 3 of hippotherapy!
Jailynn now says "I'm mad" and "ay-yah" which i think is an expression of frustration or anger that she learned from the characters in the cartoon Ni Hao Kai-Lan that teaches chinese.
I am trying to update more!
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