Friday, December 3, 2010

it's been awhile...

It has been very eventful lately... First, let me say, Hannah seems to be in a good spot, seizure wise.  (hate to even say it outloud...)  I think we have found a good medication combo.  She has only wet 2 times in the last week and only one complex partial seizure.  HUGE!!!!  and very exciting!!!!  I pray that it stays this way for a little while and give us all a little break....

Speaking of break...  (hehe)

We traveled to Alabama Thanksgiving week to visit Gary's parents.  We got down there fine, survived the 12 hour drive.  We always drive through the night to make it easier on the kids (misery on us).  Thanksgiving morning Hannah and her cousins were playing at the playground area in grandma's housing development.  Hannah fell off the monkey bars and it was very evident she broke her arm.  She may of had a seizure when we fell, we really aren't sure.  We raced her to the ER at the very rural community hospital.  The hospital took such good care of her.  The xrays showed that she broke both bones in her arm; ulna and the radius.  It was a very ugly break.  They would have to take her to the OR to reduce (set) her bones.  Many hours later, we went back to grandma's house and finally had our Thanksgiving dinner!! (we didn't leave the hospital until 5 pm that day...starving!!!!)

They put her in a full arm cast, but split the cast and wrapped it in an ace bandage.  Now we had to figure out how to get this girl home, in a lot of pain, a 12 hour drive home...

We ended up splitting the 12 hours up into 2 days.  We stayed at a hotel the first night and drove the last 6 hours home the next day.

The following Tuesday we saw our pediatric orthopedic.  He thought the Alabama doctor set her arm very well. But, he felt we still weren't out of the woods that she may still need surgery.  A five year old kid would heal nicely, an adult would no doubt  need surgery, but she is right in the middle.  An almost 11 year old girl's bones don't grow as fast and may not grow as well...  So, if her bones shift any at all, she will have to have surgery.

her favorite colors!!!!!

We went back to see the doctor this morning because she started screaming every time she moved her arm.  Obviously something wasn't right....  They got us right in, did another xray... Her other bone, the one that lined up nicely when they set it, had shifted.  big time.  Now, it looks as bad as the other.  GREAT.... ugh
We are getting very close to approaching "aggressive measures."  There was no healing (in fact, we went the other direction).  She has to keep it in the sling, increasing her pain meds and go back in a week.  I think he will make a decision next Friday as to what we are going to do....if we will be heading to surgery.  And, oh, keep her still...  YEAH RIGHT!!!  he has no idea.....
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1 comment:

happy's mommy said...

Oh my...

She is so beautiful though. :)

(((((hugs)))))

...danielle

haha...my captcha word is "unrap". How festive. ;)

December 10, 2010 at 12:02 PM

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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....