The Adventures of the Brittons

Well the title pretty much sums it up for us..Mark, Lettie, and I are currently inpatient at Vandy for some scheduled tests. She had an MRI on Monday morning and was hooked up for EEG monitoring shortly after that and we've been in the room ever since. Unfortunately the neurologist covering the floor came in last night to tell us that her EEG is showing spasms in the left hemisphere now. She has had two seizures that were monitered and it appears that her "good" and only side she has left is now seizing with spasms. This is so disheartening for her most of all, but for us a family. The MRI results haven't been confirmed by the neurosurgeon yet but the neurologist said what he had heard was that there was not connection of microfibers from the right side attatched to the left side which is what we thought may be causing this new onset of daily seizures... so again not great news. It looks as if Lettie just has a bad brain that for some crazy reason we cannot get control over these seizures with surgery or meds! It seems we put her through a wasted surgery and nothing we try works! So unfair! As you can imagine I am completely heartbroken as a mom who just wants peace for her child. I am more together today but tears continue to well up every time I look at her.
Our small group at church is working on reading through the Bible in 90 days and our challenge started Monday. We are doing a chronological study so funny that within the first day we were in Job. Not at all saying what we are going through is comparable to Job but interesting that trials just keep coming up for us. I just keep praying that God will take these seizures away give her some relief but that doesn't appear to be the case for Lettie...yet. God please take this child and free her from this burden that she has to carry daily. She is so precious and young and not at all deserving of what has been placed on her. Give her the opportunity to proclaim You as her Saviour and the ultimate Healer of all her pain!
So sidenote here... if you call and I don't answer just text cause I'm back to my old crying fit with the mention of Lettie's name. I gotta pull it together cause hopefully we're headed home today and can't wait to see Jack and Coop but don't want to worry them with all my tears. Summer

So Vandy called on Thursday and Lettie's MRI is scheduled for May 2 at 9:30am. We will then be admitted to the hospital for a day or two to begin our ATCH injections and weaning off of her Vigabatrin (this is one of her seizure meds we ship from Canada). Alot is riding on the results of this MRI. If it shows that the right hemisphere is completely disconnected then ACTH is a go. IF the MRI shows microfibers still attached to the right side then that will be discussion time of what to do next. Do we go ahead and put her through the ACTH side effects again and the difficulty of it to "possibly" stop the seizures; do we go for a second opinion MRI somewhere else; do we prepare for another surgery at Vandy (the first one there stunk..I mean reeked!). So much to decide! Please specifically pray that God will make the answer VERY clear for Mark and I. As for Lettie, she has had a seizure every day since Wed. Looks like her brain is back on that stupid cycle again! As I'm typing this post with my left hand I'm holding her in my right arm..all 25 pounds, cause she fell asleep and woke up with a terrifying look on her face and screaming. She does this sometimes and I don't know if she's scared or hurting...it's a tough one. I will post later about Coop's soccer and Jack lost another tooth; my body is tiring quick and my right bicep is burning! I've got to find time to workout!

Yesterday we headed to Vandy for our customary follow-up visits. Lettie had a 5-6 minute seizure on Monday night so we were planning on more med changes and such. Dr. Paolicchi was pleased with how she looked but disappointed on the seizures returning...again. It seems we have these honeymoon periods without seizures then they return. We seem to stay on this cycle and it is terrible for Lettie's development. My concern was that Lettie was progressing to Lennox-Gastault syndrome which is a progression of infantile spasms with fewer seizures but uncontrolled by meds. Pretty much if your EEG presents with this syndrome prepare for a lifetime of uncontrolled seizures.
Dr. Paolicchi ordered an EEG so we hung around after our morning appt and did an hour long EEG in the afternoon. The results were good in that no signs of Lennox-Gastault but also it was good so that left us with the question of WHY are we still having seizures! Her next answer was one Mark and I had discussed before but didn't want to face.... a failed hemispherectomy. Her recommendations were to do an MRI and see if there are any microfibers from the right hemishere still attached to the left and that is why we continue to have seizures with a good EEG. If this is the case the next step would be to surgically remove the microfibers! Yes that ugly word- surgery- was used. If the MRI shows no signs of attachment then we would have to try another treatment we did when Lettie's seizures first started called ATCH. This involves injections we would give Lettie on a daily to every other day basis for 6-8 weeks. While using this hormone she has to have her weight and labs drawn weekly and BP and urine tested daily. It is a lot of stuff to do but we've done it before and it can be done. The news was a lot but at least we seem to have some solutions ahead of us. I'm just going have to bathe this child in prayer cause surgery is gonna be really hard if we have to go down that path. I know what to expect now but not emotionally prepared to go back there and she had so many complications last time I don't want her to go through that again...it's just not fair to a poor 2 year old to have to go through so much in her little time here. I will keep you posted when we find out when our MRI is scheduled. It was a long day..about 8 hours in the hospital and not my favorite place by any means. Lettie also had a seizure on our way home. Isn't life just so hard sometimes?!

Today we had Jack's 7th birthday party at Laser Quest. It was a small group of his friends and they all had a blast. It was such an easy party as well, which I loved! It's so hard to believe that he will be 7 on Monday. They grow up so fast and it's so sad.FYI- Coop has a bandaid under her eye cause she got scratched by our new dog, Debo this morning while they were playing. So we now have 3 dogs, crazy is an understatement. He's a one year old German Shepard. I'll have to fill you in on that story in a later post.

It is so unfortunate that life is so busy that I'm just now getting to post this amazing story about this past Thursday, March 24, 2011. On Wednesday night our pastor, Scott Cagle, called Mark and asked if his schedule for Thursday was flexible. Mark told him it wasn't because he was booked at Cornerstone and then had to head over to Children's Dentistry for afternoon patients. Scott told him he wanted us to come downtown to the Convention Center and meet pastor Jim Cymbala of the Brooklyn Tabernacle. There was a conference going on called Refresh Knoxville and Pastor Cymbala was speaking and Scott had previously shared Lettie's story with him and it would be awesome if he could pray with us so Mark got on the phone and God made it happen to allow his schedule to be rearranged so that Mark, Lettie, and I could make it downtown. We only had a brief time because Mark had to be back to see a patient at 11:30. I wasn't sure what to expect or really what was even going on at this conference but when after we got to the Convention Center Scott led us down front and up on the stage where around 300 or so church leaders of various denominations, race, and ethnicity were praising God in song. Scott shared a little of Lettie's story with the group and Pastor Cymbala loved on us and shouted , "Just pray!" I was overwhelmed with emotion as I looked into the crowd as hundreds of people began praying for my daughter! Words do not do justice to what we felt! I cannot thank our pastor, Scott, for providing us with the opportunity of a lifetime. I so needed that prayer time. It couldn't have come at a better time for me emotionally. God is so amazing! We then get on the interstate to head home and a van in front of us has these homemade stickers on it that reads, "waitforGod.org" Do you think God is trying to tell me something?! I pray for my patience to improve as God does wonders in Lettie's life.

I wanted to share a few fun pics of Cooper. Some of them are from her birthday party at school and some are just of Cooper being Cooper, that being said, some of the more interesting ones must have been taken by Jack and apparently Coop is training to being a boxer or a UFC fighter?! She is never dull I promise you that!

This post is a little late but wanted to get in so when I print the blog one day I'll have the memories. Jack has been asking us to go hiking for awhile but it ends up either being too cold or raining so several weeks ago we had some good weather on a Sunday so after church we headed to Tellico Plains to hike Bald River Falls and some other trails. Lettie hung out with the grandparents and the rest of us headed out to hike. It was a lot fun. Jack and Coop loved it and got to fish some on the river. We went up to the fish hatchery and that was cool for the kids as well. It was a great day outdoors