Wow...Where does the time go??? Seriously. It really does feel like a blink of an eye. It is so scary to think she is over half way to an adult. {insert shiver....} Where did my FOUR pound baby go???
IEP for next year is done. For the first time since Kindergarten, we are trying inclusion next year. I am so, so happy for Hannah. She will love it. I am also so, so scared. After much discussion, I decided to give it a whirl. I would rather her be given the opportunity to excel and pushed a little more and maybe not make the highest grades (very hard coming from an over achiever), than have her work watered down and get all A's. She will still have her one on one aide. Modifications will still be in place. She will just remain in the regular ed room; of course Blitzen will be with her. Some days her intervention teacher will be in the room with her. Everyone is on board and will be watching her very close. The teachers will re-evaluate after three weeks into her 5th grade year. If she is struggling, changes will be made. I am happy....but nervous.
She is staying with her grandparents this week. I am sure getting spoiled rotten and having a ball. My mom is really the only person I trust for her to stay with. My mom has been there from the very beginning. Hannah is very special to her. She goes with us to all of our week long hospital stays. I don't know what I would do without her.
Hannah has been fairly stable. She is still having complex partials about every other day. Some days, all day long...some days, we have none. She hasn't had a tonic-clonic in 5 weeks now! That is almost a record!!! Her sleeping patterns are still very different. We go for her sleep study, EEG, and day time study the 23-24th of this month. I hope it shows something as to why she is falling asleep during the day. Even though school is out, she will still fall asleep late morning. She is even sleeping in a bit more now. As always....hoping to get answers.....
Monday, June 7, 2010
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Beautiful Hannah...
How this journey started....
Hannah was born prematurely at 34 weeks gestation. She was a relatively healthy preemie; initially having difficulty maintaining body temperature and needing to grow. She weighed 4 pounds 9 ounces at birth. When she was four months old she began to drool, non stop. We were told the first year she was "teething." At 18 months old, we really started searching for reasons of why her shirt was always soaking wet. We saw various specialists who always sent us to another specialist, saying "everything looks okay." She spent years in oral motor/feeding therapy to help her not to drool. It wasn't until she was four years old and in preschool that we started to get some answers. Her preschool teacher commented one day that she wasn't reponding when her name was called. I took this information to her pediatrician who then orderd an EEG, "just to rule it out." Much to our shock and amazement, the results showed, she was having seizures. That is the day our journey REALLY began. Once she began taking seizure medication the drooling almost stopped completely. (She will still drool to this day when she is having seizure activity). Since then, it has been a roller coaster; countless medications and medication changes. She has never really reponded well to any medication.
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
1 comment:
Well, someone's been a busy beaver!
I've never asked. Mostly because the answer is usually more complicated than "x,y,z". But also in case you're not comfy sharing so publicly. But I'll ask anyway...cause I know you love me. :)
Hannah's face is SO perfect and cute. But I have one of those at home...and it can be misleading. On the surface Trevy looks like every other 3 year old around. But it doesn't take very long with him...to realize functionally he's closer to 18 months. So if you don't mind my asking...where is Hannah developmentally?
...danielle
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