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.
Thursday, April 30, 2009
Nervous
Jailynns IEP meeting is tomorrow morning at 10 am. We decided to ask my mother-in-law to come to help look after Jailynn while we are doing some serious talking. She is very skeptical about Jailynn going to school this fall. She thinks it is too ealry. I do agree in some ways. Jailynn is metally more like a 2 year old and 2 year olds do not go to school. However we want Jailynn's services to continue and she really needs to be socialized with other children. I truely belive that she will benefit from it.
Please pray with me that jason and I can be patient, convincing and strong tomorrow. I am a known cry baby when it comes to anything to do with my daughter. Please pray the the school officials will offer what is truely best for Jailynn and cooperate well with us as well.
I have heard all too many horror stories... a few good ones too. Everyone is from so many states though and everywhere is different.
I have a little list of wants/concerns to take with me. Wish us luck!
Monday, April 27, 2009
play, heat and IEPs
It has gotten so hot. Jailynn got sick this weekend after swinging outside for awhile. We think it was the heat. we became very careful about taking her inside very often.
Jailynn has been playing with a neighbor boy, Braxton. She loves him she stands on my proch and calls for him. Saturday we had a couple and their daughter over. Jason had met them but I had not. They were nice and their 1 year old was so cute. Her and Jailynn followed each other around.
Sunday jailynn was able to play with some cousins at a baby shower and Braxton when we got home.
We bought sand Sunday for her sandbox. She tried to eat some of course and loved playing in it.
Her IEP meeting is this friday. We are nervous. I pray that they agree with us and we get what is best for Jailynn.
Jailynn has been playing with a neighbor boy, Braxton. She loves him she stands on my proch and calls for him. Saturday we had a couple and their daughter over. Jason had met them but I had not. They were nice and their 1 year old was so cute. Her and Jailynn followed each other around.
Sunday jailynn was able to play with some cousins at a baby shower and Braxton when we got home.
We bought sand Sunday for her sandbox. She tried to eat some of course and loved playing in it.
Her IEP meeting is this friday. We are nervous. I pray that they agree with us and we get what is best for Jailynn.
Monday, April 20, 2009
nordstroms
I had bought Jailynn 2 pairs of shoes at payless. She has a new afo and needed new shoes. I had to buy 2 different sizes. well after thinking about how much i paid for payless shoes I decided not to put them on her and try Nodstroms. They have a reputation for being the only place who will sell you two different sizes as a pair.
I do not know why I didnt just buy from there in the past. It would save me a bunch of frustration. The sales person at Nordroms did all the work for me. She ened up with white and blue Nike shocks. They are cute and she can walk well in them. The New Balnace's they had there did not fit her with the brace. We ended up with a size 8 for right foot and 9 for left foot.
I will definately go back.
I also found out today in the City School System, they will not allow Jailynn to have summer services if she has an IEP in place before she turns 3. So as long as we wait til June to sign it, They will have to give them to her. I have this from a VERY reputable source. I want her to have summer services to help prepare her for school. I feel like stopping therapy for the whole summer will make her regress.
I do not know why I didnt just buy from there in the past. It would save me a bunch of frustration. The sales person at Nordroms did all the work for me. She ened up with white and blue Nike shocks. They are cute and she can walk well in them. The New Balnace's they had there did not fit her with the brace. We ended up with a size 8 for right foot and 9 for left foot.
I will definately go back.
I also found out today in the City School System, they will not allow Jailynn to have summer services if she has an IEP in place before she turns 3. So as long as we wait til June to sign it, They will have to give them to her. I have this from a VERY reputable source. I want her to have summer services to help prepare her for school. I feel like stopping therapy for the whole summer will make her regress.
Wednesday, April 15, 2009
jailynn being a scary monster
Please read my last small post too. I am anxiously awaiting an update on Srikars surgery. This is a short video of jailynn being a scary monster. I had to egg her on to get her to keep doing it when I record. You will hear eventually she starts saying cheese. She knows exactlly what a camera is, so its hard to get video. She will just stop to pose. That is her daddy with her and my loud voice is in the background too. She loves to get a reaction by scaring us. the cane she is carrying is a old white cane of my husbands (he is blind) he removed one section of it to make it shorter so she could play with it. she liked to take his. She does NOT need it to walk she just likes to pretend to be daddy and likes to bang it on the floor.
srikar
I had the pleasure of meeting Srikars family today. He is having a hemispherectomy right now. Please keep this beautiful baby boy and his family in you prayers as he has surgery and begins the recovery process.
Monday, April 13, 2009
Happy Easter
Jailynn enjoyed her Easter. The day before we dyed eggs with her Nanny. jailynn calls them apples. I guess she thinks any round food is an apple.
Easter day we gave her an Easter basket. we went in the afternoon for lunch and an Easter egg hunt at my aunt's house.
For dinner I had my mom and sister over and we ate dinner at my MIL's house, I paid, she cooked! It was great because our dishwasher is broken!
I really enjoyed our day and the weather was nice enough!
Saturday, April 11, 2009
rained in
Jailynn and I planned on going to the zoo with my best friend again but it's raining! Instead we may go out to eat dinner since her daddy will be at a going away party for one of his friends.
jailynn has been trying to run alot lately and is getting better dealing with therapies. She has been crying less during therapy and the therapists all say she is amking progress.
She loves running around the house growling like a monster.
jailynn has been trying to run alot lately and is getting better dealing with therapies. She has been crying less during therapy and the therapists all say she is amking progress.
She loves running around the house growling like a monster.
Saturday, April 4, 2009
bad haircut
Jailynn had a haircut today. Well only a bang trimming. we did not wanto get her hair cut in a bob this time. I want to see it get long for a while. Also she wouldnt stay still so we couldnt do an all over hair trim. before surgery jailynn had been tolerating haircuts very very well. Now is a different story. she cried and swung her head around even when the lady was not touching her. Now her bangs look aweful. they are all uneven and too short. I wish I had not got them cut at all.
Thursday, April 2, 2009
singing
Everyday Jailynn is trying to sing something new. She has been trying to sing Ba Ba Black Sheep and the Handy Manny song. She does they Ba Ba and yes sir yes sir the rest is sing song babble t the beat. She is amazing. today she even did it in fornt of one of her OT's!
The OT said she s so impressed with Jailynn already. Her attention was so much better today.
Hoping the weather is good this coming week because I have spring break and I want to take Jailynn to the park and out and about as much as I can while I am not in school. We haev been trying to expose her to as many different places as possible lately. Hopefully I can get a play date or two in for her around therapy.
The OT said she s so impressed with Jailynn already. Her attention was so much better today.
Hoping the weather is good this coming week because I have spring break and I want to take Jailynn to the park and out and about as much as I can while I am not in school. We haev been trying to expose her to as many different places as possible lately. Hopefully I can get a play date or two in for her around therapy.
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