Saturday, August 29, 2009

Proud mama!

Allow me to indulge....

I am so proud of Josiah tonight. He has been BMX racing for a few months now. He loves it! Tonight he won first race! FIRST PLACE!!! He worked so hard and got the BIG trophy tonight. Hannah goes to all the races and is his biggest cheerleader!! (she says she wants to race too. Uh.... no!! Seizures and BMX racing don't mix).

Way to go Josiah!!!

Friday, August 28, 2009

We LOVE Dr. Neuro!

We spent a very long day at the hospital seeing Hannah's different doctors. I guess, in summary, not a whole lot of newness...

Dr. Neuro was not pleased with the increase in her seizures lately. His little trial seemed to confirm his suspicions that school is her biggest stressor. He wants to give her another 2-3 weeks and see how often we are using rescue meds. He said he will live with twice a week, doesn't like it, but will live with it. If we are using it 3 or more times, we have no choice but to start the last med. By the way, Dr. Neuro said today that Vigabatrim has been approved in the U.S. now! Kids are being very carefully monitored by opthamology due to the side affect of loss of peripheral vision... Anyhoo, he isn't too excited to start it. He wants to keep that in our back pocket in case the VNS does not work. SO, he said he will push the insurance company to approve it quickly. Surprisingly, he still thinks we can have the surgery by the end of year. I had almost given up on that idea. He also increased amounts of two of her rescue meds. Hopefully that will help end the seizures faster. I really have a lot of confidence and faith in Dr. Neuro. He really has Hannah's best interests at heart. She loves him because he knows a thing or two about Hannah Montana and I Carly!!!

Dr. Neuro also gave me the update on the genetics testing. (It is so nice everything is on the computer system, so all the doctors know what everyone else is doing) All her genetic testing came back....normal. hmmm. Quite the mixed emotions about this one. Surprised? No. No mother wants to hear that something is wrong with your child, but we already know SOMETHING is wrong, we just don't know what!!!! UUUGGHHH!!! And we are still no closer to knowing either. That is the part that is disheartening.
Dr. Cardio was very pleased with Hannah today. Her blood pressures were very good today. I think we have found the right dose with her meds now. At least for right now. That is subject to change with how fast she is growing. The girl does not stop!!! So, that was good news on that end. We did lab work to check all her levels.
All in all, not much new. We will see how the changes work with the meds and how the next couple of weeks go with seizures....

Monday, August 24, 2009

I love that dog!!!!

Today was only the 3rd day of school. A new teachers....that apparently did not bother Blitzen! He alerted to Hannah's aide to an oncoming seizure today. I was concerned it would take him an adjustment period, I learned today, he did not!! They were in P.E. class, in the gymnasium. Vanessa, her aide, had Blitzen and all the sudden, he kept pulling to get to Hannah. For those of you who don't know Blitzen, he is all business at school. He will lay in his place and...ahem...appears to be sleeping. (I always joke, it's the life of a working dog!!) He is very calm, doesn't lick, doesn't bark, doesn't jump, he lays in his "place." Until....he smells a seizure coming. When that happens, get out of his way. He WILL get to his girl. He will then sniff her in her lymph nodes and in her mouth. Then he will "paw" the handler. He gets soooo excited when he knows he has done a good job. He is ABSOLUTELY invaluable. The new staff were very impressed today.
The nurse called me and because it was the end of the day, I went into school. The nurse gave her the versed (much to Hannah's dismay). I took her home to rest....
I could tell when the versed wore off, she was definitely "off" for awhile, but then had a good evening.

Could I just add that I absolutely LOVE her teacher?!!!! She not only came down to the clinic when she found out Hannah was there. She stayed in there with her until we left, AND called this evening to check on her!!!!! I know, I know....very hard to believe. This could not be more polar opposite from last year's experience. What a wonderful difference. Thank you Mrs. Wylie!! We love you!!!!

I was reminded yet once again today how much I love that dog!!!!!

Thursday, August 20, 2009

First day of 4th grade!!

Okay... I did it. A VERY nervous mama dropped off her baby at the INTERMEDIATE school today. Holy cow, where does the time go???

She was so excited and couldn't wait to get to started.

Her teacher was so sweet this morning. She asked me if I was okay and said "I almost called you last night to be sure you were okay." What a fantastic teacher Hannah has. She is in very good hands.

Blitzen was definitely feeling all the excitement this morning. He was equally ready to get started this morning....pulling me into school!

All in all....great morning.

And no phone call yet!!!!

Wednesday, August 19, 2009

The start of a new school year!

Tomorrow is the first day of school. We had open house tonight so the kids could see their new rooms and meet their teachers. When we walked into the 4th grade hallway this very special bulletin board was all decorated. It really brought tears to my eyes...

It is a simple tree. The leaves are the kids/teachers names. At the base of the tree is an australian shepherd. He is sporting a red vest with the name "Blitzen" on it!!!! um, one word.....AMAZING!!!!

I have never seen so much excitement. The staff adore him and absolutely see his purpose for being there. I am talking even the secretaries and lunch ladies!!!! I went to their staff meeting this morning and introduced him. Had a very warm welcome. Blitzen and I trained at the new school some. (this is the first year she has a locker...she is very worried about the lock). So I worked with him sitting at the lockers. He lays in his "place" like he hasn't missed a beat. And it's a new building!!! He is such a good boy and quite the charmer.

More pics tomorrow! First day of school pics... You know the ones where the kids say..."MOOOMMM! ENOUGH ALREADY!!! hehe....

Thursday, August 13, 2009

great times with great friends...

We got to spend a great day with great friends in a pool today....So much fun. It was nice just to RELAX today!!! We weren't on a time frame, had a nice picnic lunch, and enjoyed each other's company. The kids go back to school next Thursday so it was a nice "last hurrah."
I got a fantastic phone call while on our relaxing outing. Hannah's new principal is absolutely, positively top notch!!! I had called her a few days ago because I was not happy with the transportation situation for school this year. I didn't feel Hannah's safety was being taken into account. I knew her principal would be the perfect person to call. She is a principal, but she is also the mom of a special needs child. She brings a whole different spin to the table...And boy did she ever. Hannah and Blitzen will be totally safe on the bus now. She will have the same bus driver as last year (who is fantastic!!!). Hannah (and Blitzen) love Miss Debbie. She won't be on the bus long at all and will picked up and dropped off at the door. Yay!!
We go to school tomorrow so I can meet with her new teacher. (Also phenomenal!!) She wanted to get together before school starts so we can discuss everything. She wants to know more about Blitzen and how to best work with Hannah. Amazing, huh?? It is going to be such a great year. I am really looking forward to it...

Sunday, August 9, 2009

take the good with the bad...

We had a good week, but the seizures returned. The next night after my last blog, she had a tonic seizure; not too bad though. But last night....whew....that was brutal. She started getting really agitated early in the evening; I should have figured it was coming. By 9 pm I was giving her rescue med (versed). She was extremely aggressive, speech was slurred, drooling, and she was perseverating on sounds and words... The versed has been working well and fairly fast, but last night, it took an hour and 10 minutes to work!!! ugh. (It seems like eash time I give it to her it takes a little longer to work). Finally, at 10:20 she fell asleep. Talk about an ahhh moment. She slept fairly well last night and woke up today a little tired, but happy. This afternoon she is taking a very long nap.

I got a call from our case manager who is overseeing the VNS appeal. She said the insurance company received all the paperwork. So, we wait. It will be interesting to see how long it takes to get through "the system." It only took them ONE day to deny it!! I pray that it gets approved and we can get our appointment with the neurosurgeon.

Thursday, August 6, 2009

A good/fun week...

7 days seizure free!! WOW! It has been a long while since I have been able to say that. On top of that, Hannah has spent the week at her nana and papa's house with a good friend. It doesn't get much better than that (at least for her...I miss having her home!!!). I go to pick up the girls tomorrow....
Yesterday, Hannah's genetic doctor presented her case during their monthly case conference. This is a gathering of a lot of brain power!! They basically present the "stumper" cases to see if anyone has additional ideas of what could be going on. I am really looking forward to our follow up appointment to see if there are any new ideas....


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....