On the mend...
Hannah is feeling so much better today. Once I started giving her enough motrin to touch the muscle pain, she really started doing better. She still had difficulty sleeping last night. We haven't figured that one out yet!! She was able to go to school today and had a great day! Yay!!
This was Hannah yesterday after diagnosed with torticollis. That is all the farther she could straighten it.
The topic of the day has been H1N1 flu, vaccine, Tamiflu, seizures... What a source of discussion!! I had a long conversation with her pediatrician today. She REALLY wants Hannah to have the vaccine. To her, there is no discussion about it. To be honest, I was not going to get her the vaccine. Biggest argument for it? 2/3 of the kids who have died with the H1N1 flu had neuro muscular diseases. That is so scary. Her doctor said Hannah will be one of the first people that the office calls to get the vaccine. She feels Hannah is that high risk.
Tamiflu....the next item for discussion. Apparently people are already building up resistance to it because it is being overused. Doctor's were giving it to people who didn't even have the virus, but they were afraid they would get it. For kids who have seizures, it is even more of a debate. Tamiflu can increase or intensify seizures. UGH! What is a mom to do???
I guess I need to put Hannah in a bubble and lock her in the house for the winter!!!
Tonight was Eli's pre school open house. I had to share this cute pic. Hannah was little mother hen...
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....
3 comments:
Okay but seriously...with a house that cute you can lock ME up too!
Ummmm...or you could come here and lock up in MY house. So you could play interior decorator while I homeschool all the kids!
...danielle
Danielle, you are cracking me up!! I will post a pic of what the house looks like, not just the porch!!
thank you, you are very sweet...
marcia
Seriously though...it just drips charm. Love it!
I try...just don't have the gift. I'm better with the words I guess...
((((hugs))))
...danielle
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