Friday, February 26, 2010

Home, Sweet Home....

Hannah working on a wind chime for Nana....

We are home from our VEEG stay at IU Hospital.  It was a new experience as this was the first, NON Children's Hospital we have ever stayed in.  Most of the staff were great.  I think they enjoyed having a kid to work with.  The biggest thing was that they didn't have a Child Life Department, which I knew ahead of time.  So we brought our own!!!!  We had every craft under the sun.  It was "THE ACTIVITY ROOM!!!"  We were able to keep her very busy.

Blitzen was quite the hit as well.  Everyone loved him.  The word spread quickly that he was "in the house!!!"  Employees and patients were coming to see him.  We made lots of friends this past week! Top kuddos go to our favorite nurse, Melissa.  She was our nurse the first day and set the bar very high!!! (she came to visit us the rest of the week even though she wasn't our assigned nurse).  She would do ANYTHING and EVERYTHING for Hannah....What a fantastic asset to Indiana University Hospital.  TOP NOTCH!!! 

Hannah is the bravest, best trooper I know.  She got four IV sticks (two didn't work) and didn't even flinch.  The nurses commented that she did better than most adults there.  Hannah didn't complain at all the entire week.  She even wore her BI PAP mask.  Most of you don't know how monumental this is.  She didn't used to wear this in front of anyone...not even her dad.  She was very self conscious of how she looked in it.  Hannah declared this week that she LIKES it!!!!  WOW.  When she is ready for bed, she now asks for it, I help her put it on, and she is "light out."  I am one very proud mama.


We had to wrap her head so her BI PAP wouldn't mess up the wires....


Hannah and our favorite nurse, Melissa

We got some really good information while spending the week there.  Most telling to me, Hannah's EEG pretty much looks the same on meds as it does offf of meds....  I think a change is definitely coming our way.  We did get to see Dr. Salanova while we were there, but she wanted to wait until she could see all the information and the report until she gives her recommendations.  We have a follow up appointment in March, but not until the 17th.  I am very anxious to see what we are going to do.  Hannah had only one small seizure while we were there.  She had tons of spikes and slowings of her waveform, which is seizure activity.  Dr. Salanova did not want to take her off her medications.  She wanted to see how she looks and functions on the current dose.  Apparently not too well.....

While we were there, I also got a call from genetics.  Hannah does not have Ring 20 Epilepsy Syndrome.  I really thought this was going to be her diagnosis.  Her 20th chromosome was normal, not showing any ring.  So, the search continues.....



Giving lots of lovins to Blitzen.  He loves laying with her on the bed...




Awwww.  gotta love it......


We always hang a sign on the door, so no one is surprised to see a dog in the room.  (especially unsuspecting staff in the middle of the night!!!)


Just Chillin......Life of a Working Dog!
Posted by at

2 comments:

Anonymous said...

I love the new blog Marcia. I always look forward to your updates.

February 26, 2010 at 6:38 PM
Danielle said...

Well...lots for you to think about, huh. What a roller coaster ride the quest for a diagnosis is. I'm sorry, hon. But the pics are cute...if that helps?! :)

...danielle

March 5, 2010 at 4:26 PM

Post a Comment

Subscribe to: Post Comments (Atom)

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....