Thursday, July 30, 2009

still hope...

Hannah had appointments with her cardiologist and geneticist. What a long day....She really hung in there like a champ though. Her blood pressures were very good. Dr. cardio decided to take her off the one BP med. Yay! (she is still on two different meds) We go back in a month to check them again and see if the adjustment was a good one.
Seeing the geneticist took the most of our afternoon. My head was spinning by the end. It had been almost two years since we had been there. They went over all of her history again. After going over potential diagnoses, I point blank asked him if he feels like she has an underlying syndrome. He said "yes." But, the difficulty is going to be finding it. Like before, nothing pops right out at them. They do feel she has too many things going on for them NOT to be connected some how.
We aren't going to do the muscle biopsy right now. They are doing a screener to see what it shows. We took 6 vials of blood. They are looking for several different categories of syndromes. Most of the tests will take 3-4 weeks to get the results. I left extremely exhausted, but with hope. I still have hope to find out if she has a syndrome.

Monday, July 27, 2009

A room fit for a princess...

It has been a long time coming, but Hannah got her new bedroom this weekend. This past Feb, we had to buy Hannah a new bedspread because her old one was dry clean only. You ask, what's wrong with that? Well, every time she has a seizure, her entire bedding has to be washed. If not, her seizure "scent" will saturate her bedding and he could stop alerting with new seizures. SO, we promised her we would paint her room to match her monkey bedspread. (She is crazy about monkeys!!!) This was the weekend. Whew!!

It turned out so pretty. Truly fit for a princess... It is all done except for her bed. Papa is going to make her a platform bed next weekend. He is going to make the ledge wide enough so her BI-PAP machine will fit on it. That will be so nice!

We have a big doctor appointment week this week. She sees her cardiologist and has a genetics appointment, both on Wednesday. I think we are about to embark on a whole bunch of new testing. She is on three different blood pressure medicines now. The cardio doc said if her BP isn't down with this visit, she will have to aggressively figure out what is going on. (whatever that means). She is getting worried about her heart. I really don't think we are to the bottom of WHY she has high BP. We are just trying to treat the symptoms. It isn't working too well. But, that leads us back to genetics. I think they are going to redo some blood work and schedule a skin and muscle biopsy. The next step is to see if she has a syndrome, mitochondrial in nature.
So, we probably won't know much more after Wednesday, but hopefully we will be going in the right direction.

Oh, I don't think they are going to keep her on the Clonodine much longer. I called Dr. Neuro today. I do think it has helped her to SLOW down a little. She isn't quite as impulsive. And the seizures have slowed down slightly too. BUT, she is not sleeping well. She is moving, thrashing and talking more than normal. But the biggest concern is that in 3 1/2 weeks, she has gained 15 pounds!!!! not good. I really don't want that to be one more thing we have to worry about.... I am not sure what we will do now, meds wise. I still am waiting to hear about our insurance appeal with the VNS. Hopefully we will know something soon....

Friday, July 17, 2009

Total Frustration....

Hannah has been so tired since returning from camp. She fell asleep as soon as her head hit the pillow last night and didn't wake up until 9:45 this morning!!! That is a record. She was really dragging around noon. I told her just to lay down and rest. She fell asleep for 2 1/2 hours!!! That is almost unheard of from Miss Hannah. I think she is feeling better now. And the best part is....NO SEIZURES!!!! Woo Hoo!!
Now for the frustrating part as eluded to in my title.... I got a call from a case manager today that Hannah's VNS (vagus nerve stimulator) surgery was denied by our health insurance. UGH!!! She said not to get discouraged yet. HA!! They are beginning the appeal process which involves more history given to insurance company to prove we have tried everything else and studies proving that VNS can be very successful. I believe this case manager really knows her stuff and will get this through. It will just take time.
All this from our MILITARY insurance (TRI CARE). Yes, the same MILITARY that has taken my husband away from his family for a year. It seems to me, this is the least they can do!!!!! I know this is just another hurdle...I get tired of jumping unnecessary hurdles!! We cannot even schedule our appointment with the neurosurgeon until it is approved through our insurance. (just the modulator part that goes in her chest is $30,000!!). So...we wait.... Hopefully the appeal won't take too long and they will APPROVE it for Heaven's sake.

Thursday, July 16, 2009

Refreshed and Exhausted....

My baby girl is home from camp!!! It feels so good to have her home. (Blitzen was happy to have her home too. He would actually cry when it was time to go to bed without her. He missed his girl!!)
As always, she had a fantastic time. It is time of renewing friendships, laughing, doing things you never thought you would do.... They jam pack their week full of activities. To name a few things...Hannah swam, rode in a canoe, zip line, rock wall, archery, horseback riding, target shooting with a BB gun, fishing, tie dying....are you tired yet??? Whew. She was very excited to report (and show pics) that she caught FOUR fish!! I was very impressed. As the director (who is phenomenal) said tonight to the kids, "you may have epilepsy, but it doesn't have you!" These kids can do anything!

She always seems so much older when I pick her up from camp. So many stories to tell. New friendships to talk about. Pictures to share. And memories that will stay with her forever...

Hannah is definitely refreshed after the wonderful week, but obviously very tired. We will see what kind of week she has. Normally the week after camp is filled with seizures, because of sleep deprivation. It is worth it...

Together again!!!!

Sunday, July 12, 2009

Invaluable life lessons...

The time has arrived again....... Hannah's favorite time of year. A place where she can feel absolutely normal.... Where everyone struggles with the same things. Everyone waits in the "medicine line" to get meds morning and night..... She is at Camp Dreamcatcher. A camp only for kids who have seizures. It is the norm at this camp. This camp has taught Hannah so much. It is her third summer. I will never forget the first time she went. She came home and proudly announced "Mom! Everyone there has to take medicine too!!!!" She understands now there are so many different types of seizures and how they can affect people so uniquely. Some of her very best friends are there. They chum around like peas in a pod for a week. I love that she can have this experience. I feel safe with her there too (although I am always thinking of her, and a little nervous). They have nurses and a doctor on staff. The counselors (many of them) are amazing. They LOVE these kids love and would not want to be anywhere else!

To make things even nicer this summer, they have a couple new, absolutely gorgeous cabins!!! Nothing like a new cabin with clean showers, no gum on the beds and the smell of NEW wood! They even have central air.... NICE!!!

We opted to not leave Blitzen with Hannah at camp. I really didn't want her to worry about what to do with him while she swims, rides horses, canoes, rides the zip line (YES, a 50 foot zip line. her favorite part. The first one to volunteer to go down!! Who knew???). I don't want to burden a counselor with taking care of him and honestly didn't have time to "train" them. I also thought it would be hot for him to be outside all week. SO, he and I are going to have several good training sessions this week. It is actually good for them to be apart once and awhile.... He was very sad to leave her though.... (she was sad for that part too).

She will have a great week of fun. I love that for her. Nothing else to worry about except having FUN!!! She deserves it.

Wednesday, July 8, 2009

The search is on....Again.

I got Hannah's genetics appointment scheduled for July 29. I was amazed it was that soon. We are going back to continue our search for THE overall diagnosis. We were there about a year ago. We did all the basic genetic work up then and everything came back normal. They told me the next step would be to do a skin and muscle biopsy to see if it's mitochondrial in nature. I wasn't ready to go there. Who wants to put theis child through that?? But I don't feel like we have a choice now. All of her specialists feel like we need to do this. So we are.
Technology may have improved in the last year, so they may repeat some tests that were already done. We are seeing a different doctor this time, which may be a good thing. That remains to be seen.
Hannah has had several seizures over the last several days. She had one last night that was one of the harder ones she has had in awhile. Blitzen is having a hard time too. Because of all the medication changes her "scent" is changing. This confuses him. He knows it's there, but it's different. So, I continue to train with him almost every night until her medication is a little more stable. Hopefully then I can regain complete trust in him. He is still such a good boy! We are still madly in love with him.

Friday, July 3, 2009

Trip to the zoo...

Today was Military Appreciation Day at the Columbus Zoo. Because of that, we were able to get in for free!! Who can pass that up?? It really wasn't too hot today but there were so many people there. I have never seen so many people at a zoo before (and it wasn't even the weekend yet). This was Blitzen's first trip to a zoo. I was a little nervous because I have heard many stories about service dogs at the zoo! Sometimes the caged animals don't appreciate the dogs' freedom. But, Blitzen did beautifully!! Although, I am not sure he even saw any animals. I think all he saw were legs!!!
I ended up renting a stroller, at least for Eli to ride in. As it turned out, all 3 kids rode in the stroller!! I got a good workout today. I am so glad I had it though. Hannah really faded in the afternoon. I am not sure if it's the new medication, the heat, the people, or all of the above. She almost fell asleep while I attempted to push them through the zoo.
Soooo many people asked to pet him. (I think they thought we were part of the zoo!! lol) I got the the point I said "sorry, he's working." I don't usually do that, but we would not have gotten anywhere today. Most people were very kind, but there were the usual few, rude (very rude) people.
Our ride home was a different story though. Hannah was so tired and started getting very agitated. She became more and more upset and started having a complex partial seizure. She was perseverating on one thing over and over. Then she became very aggressive...towards me....while I'm driving!!!! uh, not good. So I pulled over and got her rescue med out. She took it, but it really didn't help much. I wish I would of had the Versed with me. For the next several hours, she really struggled with gaining control. I was able to catch some of it on video. I really want to show her doctor's the extremes she has....

Wednesday, July 1, 2009

Starting new medication

Dr. Neuro spoke with Dr. Cardio and she said it was okay to start the Clonipine. She said to be sure to call if Hannah has any dizziness to be sure her BP isn't dropping too much. Hopefully this will help some of her behavior issues and possibly reduce her seizures. That would be a welcomed side affect!!! We started the first dose tonight. They are titrating her very slowly. She will be on full dose (one pill am and one pill pm) in about a month. He thinks it's definitely worth a try to see if her quality of life improves any.
He said he talked with another Dr. Neuro (one who works only with surgery cases) about VNS for Hannah. Our Dr. Neuro and I and pretty much everyone else, knows that this other doc in NOT an advocate for the VNS. He does not like it. He said he doesn't think it will help Hannah. Our Dr. Neuro said but doing nothing won't help her either. We are running our of options and I am willing to try something! Yay Dr. Neuro!! The other doc gave him his blessing. It shouldn't be too long for insurance to approve it; then we will get an appointment with the neurosurgeon. I am praying this will be an answer. Some help to her. At the very least, reduction in seizures.

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....