Jailynn's Kennedy Kreiger home therapist started back today. Someone else came with her to do the eval. Her therapist thinks she regressed a bit with her walking, mostly confidence and stability. I agree. Hopefully now Jailynn will get back up st speed with how she was a month or so ago. She wants someone to hold her hand all the time now and acts scared most of the time if you let go. We all know she can walk independently she was doing it for months.
Her Kennedy speech therapist will be new for us and she comes Monday. Her Kennedy OT is on vacation and should be calling us soon. Her infants and toddlers OT had ordered a beink splint before Jailynn turned 3, the order was messed up and we finally received it today in the mail. The thumb part is too long thought. The therapist is coming to check it and fix it this coming week.
Jailynn should start June 29th with Extended school year services, she is only getting 1 hour Pt and 1 hour OT. I called the school today because we have gotten no word about when where and who is doing her therapy. All the school IEP office lady could tell me was that it would be at home and someone should call. I asked when should I expect a call and from whom. She said she has no idea.... great right!?
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, June 25, 2009
Wednesday, June 24, 2009
new words
Jailynn has 3 new words she is saying regularly. They are "sure", "hold" and "play". She is so cute. Today I was able to put her hair in a ponytail! she really didnt like it at first but so far she has kept it in all day. I took her across the street to play with the neighbors son. She had such a fun time and he played so good with her too.
Thursday, June 18, 2009
Home from vacation
We went to Ocean City this week. jailynn was getting over being sick and was a total crab the first two days. She didn't seem like my sweet daughter at all. By yesterday day 3 she finally turned back into my sweet little girl. It was too cold and windy to enjoy the beach. jailynn wasn't wanting kiddie rides. Maybe next year?
I received an email from the reporter from the Dundalk Eagle. She is going to call me and do another follow up article about Jailynn. I am planning on doing a Friendly's Fundraiser night to raise money for the Hemispherectomy Foundation and I am hoping she will had that to the article.
While on vacation I taught Jailynn to say "play". She will sit on the floor and ask you to play or scoot off the couch to get to the floor to get her toys and say play. It is very cute.
I received an email from the reporter from the Dundalk Eagle. She is going to call me and do another follow up article about Jailynn. I am planning on doing a Friendly's Fundraiser night to raise money for the Hemispherectomy Foundation and I am hoping she will had that to the article.
While on vacation I taught Jailynn to say "play". She will sit on the floor and ask you to play or scoot off the couch to get to the floor to get her toys and say play. It is very cute.
Saturday, June 13, 2009
getting sick
Jailynn has been sick since Thursday. We though it was allergies at first. That night at dinner time she vomited. She had a temp. I have been giving her Tylenol she keeps running 100-101F. I am sick since Friday. My throat hurts, im achy and my nose is congested. I'm not sure what all is bothering Jailynn since she cant tell me. She have been lounging on the couch for 2 days together. She keeps making me watch Blues Clues. that's all she wants. We did get her to eat more today than yesterday. I pray we get better by Monday so we can go to Ocean City. I hope her daddy doesn't get sick.
I noticed she went to school for 3 weeks and was sick 2 times. I hope this doesn't continue when the school year starts again.
I noticed she went to school for 3 weeks and was sick 2 times. I hope this doesn't continue when the school year starts again.
Thursday, June 11, 2009
"Wuff foo"
"Wuff Foo" that is what it sounds like when Jailynn says LOVE YOU. It is so cute. If I say Love you to her she will say it back. She will also do it again if I say tell daddy. I cannot wait until she says it on her own to us. She also just started saying her teachers name. I got her to say it yesterday. Her teachers name is Kelly or Ms. Kelly. I told the teacher yesterday that she could say it. Today the teacher said Jailynn needed help with her snack and she looked over at the teacher and said "Telly, Telly" I am so proud of Jailynn. Tomorrow is the last day of school though.
Yesterday I spoke to the supervisor with transportation about my concern for the fall and the bus transportation. He said for me to contact him at the end of July, that's when they will be doing the schedule. I need Jailynn to have no more than 1 hour ride on way.
Yesterday I spoke to the supervisor with transportation about my concern for the fall and the bus transportation. He said for me to contact him at the end of July, that's when they will be doing the schedule. I need Jailynn to have no more than 1 hour ride on way.
Tuesday, June 9, 2009
its a shame...
that school ends this week for Jailynn. Not that I want her in school all the time, but she just got used to it. Today I dropped her off and her teacher said i could just put her on the carpet near the toys. jailynn scooted right to the play kitchen and food and started playing. It was like I wasn't there! It is good that she will be in the same classroom with the same teacher next year. Only different classmates, I do think 2 or 3 of the same kids will be there with her though.
I have gotten her to repeat "I love you" a few times. I am going to keep on working on it with her. I cant wait until she spontaneously.
I have gotten her to repeat "I love you" a few times. I am going to keep on working on it with her. I cant wait until she spontaneously.
Monday, June 8, 2009
no crying!
I dropped Jailynn off at school today and it was the first day she didn't cry! Too bad this is the last week of school and we will have to get her readjusted in September.
I gave her teacher a bag of over 30 books today that I wanted to donate. Some were from my best friend. The teacher was so happy to get them and I felt really good giving them.
The hemispherectomy reunion is coming up. Jane and I are going to have a Friendly's Night at the Friendly's on Merritt Blvd. I hope we can raise a nice amount by doing that!
I gave her teacher a bag of over 30 books today that I wanted to donate. Some were from my best friend. The teacher was so happy to get them and I felt really good giving them.
The hemispherectomy reunion is coming up. Jane and I are going to have a Friendly's Night at the Friendly's on Merritt Blvd. I hope we can raise a nice amount by doing that!
Wednesday, June 3, 2009
davastated ( not about jailynn)
I followed a blog on her for themcdonald five i was shocked to see this copy and paste the address into your tool bar. http://www.kvue.com/video/?nvid=367999&shu=1
I also read a blog the mother did on another diary site.
Please pray for this little beautiful girl Dakota.
This sickens and sadness me so much.
Please pray for Emma who had Hemi surgery recently as well.
I also read a blog the mother did on another diary site.
Please pray for this little beautiful girl Dakota.
This sickens and sadness me so much.
Please pray for Emma who had Hemi surgery recently as well.
Tuesday, June 2, 2009
Happy birthday!
Jailynn had a wonderful birthday!We had a great turnout with the party and I had the exact amount of food needed. All the cake was eaten and I do not have a fridge full of left overs.
She got a ton of clothes and lots of art supplies. The cake was so cute. jailynn learned to say "I three" and "happy" today she also makes a good attempt at singing the happy birthday song. I have pics and some video but I have to upload it all.
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