jailynns daddy Jason was in the Veteran's Hospital Thursday- Monday because of an abcess and he needed surgery. He's been in alot of pain and Jailynn and I missed him so much. We are very glad he is home. Jason is feeling better and better with each dressing change the pain is getting less.
When he got Jailynn from her room after her nap she possibly had a seizure and threw up. She has threw up 2 more times. Now she is laying on daddys lap trying to fall asleep and intermitently crying.
I talked to Jailynns Infant and toddler program coordinator and she scheduled a home visit and after that she will schedule a phone confrence call with the school system and then they will schedule a meeting to do an IEP for Jailynn(probably march).
I also called Diana( the coordinator or the hemispherectomy surgery) and she called back, she is trying to set up Jailynn's Neuropsych evaluation for surgery pre-op for december 15th and 16th ( i will not be in college then because of winter break). So she should be calling me back. She has not found out if January 15th will be okay for surgery because the surgeon is on vacation right now.
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.
Tuesday, October 28, 2008
Sunday, October 19, 2008
better after a few weeks of being sick
Jailynn has been sick most of october. Started out with a cold type thing going through our house, then she had green mucus from her eyes turned out that she had an ear infection. Then her dad and I had a stomach bug or something and she got it. We ended up in the ER with her because of dehydration. She couldn't keep even a sip of liquid down.
After a few rough days things are finally looking up.
Jailynn seems much much better now. No more vomitting. She has been drinking less for several weeks, she's getting a little better now. I think its a control thing. She wants to assert her independence and drink when SHE wants to. She is gettimg stronger walking on her own and takinglonger steps more (vs duck waddling steps).
She has an evaluation for OT at kennedy kreiger tuesday. So she will get it once a week there and once a week at home.
We received our. First EOB from insurance and it looks like each therapy @ kennedy krieger will cost us $50!until we meet our max out of pocket of $3,000.
Still no news about set dates for surgery appts.
After a few rough days things are finally looking up.
Jailynn seems much much better now. No more vomitting. She has been drinking less for several weeks, she's getting a little better now. I think its a control thing. She wants to assert her independence and drink when SHE wants to. She is gettimg stronger walking on her own and takinglonger steps more (vs duck waddling steps).
She has an evaluation for OT at kennedy kreiger tuesday. So she will get it once a week there and once a week at home.
We received our. First EOB from insurance and it looks like each therapy @ kennedy krieger will cost us $50!until we meet our max out of pocket of $3,000.
Still no news about set dates for surgery appts.
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