A room fit for a princess...
It has been a long time coming, but Hannah got her new bedroom this weekend. This past Feb, we had to buy Hannah a new bedspread because her old one was dry clean only. You ask, what's wrong with that? Well, every time she has a seizure, her entire bedding has to be washed. If not, her seizure "scent" will saturate her bedding and he could stop alerting with new seizures. SO, we promised her we would paint her room to match her monkey bedspread. (She is crazy about monkeys!!!) This was the weekend. Whew!!
It turned out so pretty. Truly fit for a princess... It is all done except for her bed. Papa is going to make her a platform bed next weekend. He is going to make the ledge wide enough so her BI-PAP machine will fit on it. That will be so nice!
We have a big doctor appointment week this week. She sees her cardiologist and has a genetics appointment, both on Wednesday. I think we are about to embark on a whole bunch of new testing. She is on three different blood pressure medicines now. The cardio doc said if her BP isn't down with this visit, she will have to aggressively figure out what is going on. (whatever that means). She is getting worried about her heart. I really don't think we are to the bottom of WHY she has high BP. We are just trying to treat the symptoms. It isn't working too well. But, that leads us back to genetics. I think they are going to redo some blood work and schedule a skin and muscle biopsy. The next step is to see if she has a syndrome, mitochondrial in nature.
So, we probably won't know much more after Wednesday, but hopefully we will be going in the right direction.
Oh, I don't think they are going to keep her on the Clonodine much longer. I called Dr. Neuro today. I do think it has helped her to SLOW down a little. She isn't quite as impulsive. And the seizures have slowed down slightly too. BUT, she is not sleeping well. She is moving, thrashing and talking more than normal. But the biggest concern is that in 3 1/2 weeks, she has gained 15 pounds!!!! not good. I really don't want that to be one more thing we have to worry about.... I am not sure what we will do now, meds wise. I still am waiting to hear about our insurance appeal with the VNS. Hopefully we will know something soon....
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....
1 comment:
Bristel would be SO jealous! She loves princesses...not so much the monkeys though. ;)
Gosh...you have a very big...very heavy month ahead of you, huh? I wish I could allievate some of the stress...but maybe knowing you're not alone helps? It helps me a little.
I had no idea about the seizure scent? Do you find you're noticing seizures that you had missed before? I wonder all the time if Trevy's weird-ness is really seizure activity...it's just so hard to know sometimes.
...danielle
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