Wednesday, November 25, 2009


I took the kids to a VERY busy photo studio last night. We purposely scheduled the last appointmnet of the night so Hannah wouldn't be overstimulated and because we have a dog. That equals a kid magnet!!! But, it was pure chaos and they were behind (everyone is getting their kids Christmas pic taken). A small meltdown, a Blitzen alert, a small complex partial, lots of little hands in Blitzen's face and an hour and half later....it was our turn!!!! BUT, the pics turned out GREAT. Thanks to Danielle once again. The kids know her now and she LOVES Blitzen. She always spends extra time and is patient with everyone.

Update on second opinion......We have decided to give Riley Children's Hospital a whirl. I called her pediatrician yesterday (who is just as frustrated) and she is making the referral. They are scheduling into the end of February though. So, we will have to hang on until then....Her pediatrician also wonders if we need to go somewhere bigger...pull out the big guns....Mayo, John's Hopkins, UCLA?.... Maybe someone has seen someone like Hannah before????










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Danielle said...

Beautiful pics...

And I absolutely think it's a good idea to go somewhere bigger. I can't over-emphasize the difference it can make to have seasoned eyes and minds working on how to help your child.

I have no idea if it would benefit you...because he might recommend coming to him...but Dr. Chugani is available via email...just so long as they are short and sweet! ;) You could nutshell her history and ask him where he would recommend you go? The thing with neuros is that they know other neuros. Brilliant neuro tend to gravitate towards other brilliant neuros. It's just a thought...and again I don't know if it would even benefit you. Chugani is the guy for IS kids...but for Hannah I would guess someone different.

Anyway...

Hope Thanksgiving was sweet...

...danielle

November 30, 2009 at 5:00 AM

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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....