Provision and other updates

I joined jazzercise with a friend and I freaking love it. It is actually fun! Most of the leaders "chat" the whole time which lets me listen to whatever they are rambling on about and between that and trying not to look like a damn fool (I am super uncoordinated when it comes to aerobics/dance moves) - it keeps my mind off my own life for a WHOLE HOUR! And that is plenty enough reason to go, but it also burns around 600 calories in that hour!

So after meeting some people from the TSC alliance of greater KC (other families that are affected by TSC) pretty much everyone said CMH neurology is not the way to go with this disease. -I actually more heard- "get out of there as soon as you can" "get your kid to a TSC clinic to see one of their doc's ASAP" "CMH neurology steered us in the wrong direction for a long time" ect. Now- this being said I would also like to say that I work a good amount with CMH neurology and I have seen a lot of people that are very happy with their services. However- I think specifically related to TSC it is better to go to a TSC clinic. So I started calling trying to get into Dr. Wong in St. Louis on Tuesday. (I also had a couple gals from the alliance making phone calls/throwing our names out there on our behalf) on Wednesday I got through to his nurse Chris and she gave us an appointment for Friday morning at 9am. (She described herself as a bit of a bleeding heart). So Thursday I spent most of the day cleaning/packing and getting the mutt where she needed to go. And then around 7pm we headed out.
God totally provided for us on this trip-
1. My dad rented us a hotel room so we had a place to stay without shelling out 100+ bucks
2. Some friends brought us a goody bag of snacks and *some* moolah and a gas card for the trip (*when I say SOME I mean a lot-it was VERY VERY generous)
3. We had dinner provided for us before we left-which I cannot tell you how nice that was! I knew I would not have time to make something before we hit the road and it was awesome to have a hot meal that wasn't fast food before we left.
4. We got pulled over because we had a headlight out in the middle of Missouri somewhere and the office just asked us to get it fixed instead of giving us a ticket. (Dan may have thrown in that we were headed to see a Dr. in St. Louis and I was crammed in the back holding a binki in Em's mouth so I think he felt sorry for us)

We saw Dr. Wong. He didn't tell us he could cure our daughter...He didn't tell us the MRI looked great and that her brain tubers wouldn't affect her...but we still left feeling hopeful. He is going to keep her on the Zonegram but also add Vigabatrin for the infantile spasms she is having (these started on tuesday last week). Infantile spasms LOOK less drastic than seizures but are way more neurologically devastating. His nurse even got it delivered to our house TODAY! (remember it is a holiday weekend! That is good care right there!) The Vigabatrin has a 90% success rate in stopping the spasms...and it may or may not help with the seizures. We was able to tell us more about her MRI and that there is one pretty large tuber causing the seizures at this point. We was also able to tell us where it was and that the part of the brain it is in is very responsible for language. So we will have to be very proactive about developing her language. Dr. Wong was great. He sat with us for over a half an hour (even though he Squeezed us into his already packed schedule) he answered about a million questions. And he was very honest.
We also got to talk to another TS mom who had her 16year old daughter with her. They were very encouraging to see and speak with. ( I could talk for about an hour about this visit...but in interest of not making this a book I won't)

We (dan and I) have both started noting some delays in Emmaus. I know it has been less than 2 weeks since all of this started but babies just develop SO QUICKLY! I would say before the seizures started so 8weeks and 3 days- she was perfectly on target. In the 1 week 4 days since then we have seen her basically stop in her development and maybe even regress some. She is making less eye contact, her neck and trunk support is less strong (this is probably some due to meds as well) she is still cooing and smiling an awful lot though! Which brings us a lot of joy in this difficult season. The problem is she is just seizing SO MUCH! So she is seizing, and recovering, and there is no time for developing. We are really hoping the vigabatrin will help this. We need to get her seizures under control. The zonegram tapers up so we increase her dose to the final dosage tomorrow night.

We are doing okay. We are tired physically and emotionally. We are finding Joy in the little smiles and coo's and trying to enjoy the simple things in our life. All of this has definitely slowed us down, it has made us realize what is important and what we can do without cluttering up our lives. We have definitely felt covered by the spirit and continue to see God's goodness to us. I go back to work this week. I feel very mixed about that. I am kinda excited to be in a world where I get to help others again. For 12 hours I get to pour into other people and make their lives a little better. I have always love this about my job- but in a time where the tables have turned and at home I have to be so focused on my family and don't get to spend much time looking beyond them- it will be a nice outlet to get to "help" other people. But I am sad that I will miss hours with my precious girl. I am nervous that her seizures are not under control yet and that I won't be here to hold her hand through them. Dan will do great. He is a wonderful father- but I am also worried about him and the lack of sleep he will get. She seriously seizes a lot at night and I know he will be up with her holding her hand through them and then have to work all day. I know those seem like silly worries, but honestly they are there.

Please continue to pray for healing in her body. We trust that God has a very specific plan for us and for out sweet little one.

And thank you to all of you who have blessed our family in the last week. Financially, by bringing food, by offering to watch Em so I can take a nap, by calling doctors, or just reminding us that we are not walking this road alone.
We are so thankful.
Love, La