Thursday, April 29, 2010

Loves the Lord...

I am so proud to write that Hannah gave her heart to Jesus and was baptized this past Sunday!  She has wanted to get baptized for quite sometime, actually.  We wanted to wait until daddy was home from Iraq so he could witness this wonderful occasion!  She was baptized along with her two cousins, Audra and Emma.  AND was baptized by her uncle who is also her pastor.  I know he was very proud too....

Praying for Hannah


Praise the Lord!!!

Before the girls were baptized, they also sang Untitled Hymn.  They did an awesome job!  These are huge strides for Hannah for wanting to do all this in public.  She had one proud mama and daddy!!!







We have had a week of doctor's appointments...We finally met with Dr Neuro/Sleep doc...  It was a fantastic appointment!  My first impression was a great one.  We are going to do some sleep tests to see why she is sooo tired in school and why she is having such crazy sleep patterns.  In June we will go for an EEG, sleep study and an MSLT study (daytime study). 
We also saw her cardiologist this week.  Her blood pressures were up some, but she doesn't want to change her meds at this point...We are going for an echocardiogram to check on her heart....

Blitzen's been doing great!  He has been alerting at school and at home.  We continue to feel absolutely blessed to have him as part of our family...What a good boy, he is!!!!!
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1 comment:

Danielle said...

making my heart all squishy...

xoxo

...danielle

April 29, 2010 at 4:10 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....