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.

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....

SEIZURE FREE=GREAT WEEK!!!!!

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.

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....

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.

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!!!!

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.