The Adventures of the Brittons

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

I'll start off with a quick update on seizures. Since I last posted Lettie has had two more seizures, so not terrible by any stretch, but definitely hated! She has seemed fine the last few days, looking scared or startled only a few times upon waking so we pray that it'll stay that way and only improve.
Last Monday Lettie started a gymnastic class at Heidi's Musical Gymnastics in Farragut. She takes a private 30 minute class on Monday mornings at 8:45. That seems early, and it is, but we're already up by 6:45 to get Jack ready for school and mornings are better than afternoons for her so that's what were working with. She is doing ok in the class and I really think it will help her work on some of those major physical milestones we're still very far from reaching like rolling, crawling, and hopefully someday, walking. Lettie is very opinionated in her own way and does not like to have to work for anything. She starts to fuss and cry when Ms. Heidi makes her stand and forces her to move her feet like she is walking to the different stations. I don't like to see her upset but the therapist in me( I once was an OT for those who didn't know what I did in my former life before motherhood) wants to see her push on to get stronger and gain more skills she needs to improve. I got some cute pics of her sitting on the mat before her class started and then after class in the special chair you sit in to get stamps and glitter.

Well, unfortunately I hate to post this but for some crazy reason Lettie had a seizure yesterday evening after 20 something days without one! The seizures were same old, same old just like old times (sucks really!). As you can imagine I was upset, mad as usual. I think that's my main emotion anymore...mad that this is my life. I don't want this for my daughter or anyone else's for that matter. Oh well, what more is there to say. Thankfully she didn't have one today so maybe yesterday was just a fluke incident and they won't return. I will continue to pray for a miracle for Lettie and Lucy as well. God please do this for these precious girls!

This is Lucy, the little angel I have asked all who read to pray for continuously. She continues to fight this terrible cancer and needs all the prayers to God she can get. You can follow her story at erikandkatekrull.blogspot.com

One of my good friends from Memphis texted me the other day with devastating news regarding one of her friends daughters. Her name is Lucy and she just turned 5 last week and has been diagnosed with a devastating form of brain cancer, medulloblastoma. This came about in the blink of an eye...she was ill and her parents took her to the doctor thinking it was just a virus, by 3pm that same day they were told she had 3 brain tumors and tumors in her spine. This happened on a Wed and she was in surgery two days later. She is heading to St. Jude for intense chemo/radiation daily for 6 months once she is well enough from surgery. This will be "hell" on her little body. As you all know, we have been in a similar situation with completely different circumstances of course. I ask that you please add Lucy Krull to your prayers. This situation has been very emotional for me and brings back such terrible memories that I find myself getting nauseated when I think about Lucy and her family as they lie in a hospital room with their worlds shattered...praying this is temporary. I have cried much this week and continue to for this family. I have never met them but totally understand how difficult it is to be dealing with a sick child. The Krulls have 2 other children, a 7 year old daughter and a 5 month old son..all too familiar for me as well. I pray that Kate, Lucy's mom, will receive some peace in her soul from God because it is such a struggle to be a mom in this situation. You know exactly where you should be, by the side of your sick child, but your heart is so torn missing the lives of your other two children. I honestly cannot explain in words how your heart aches..it is so hard I am crying just remembering how I felt during those times...It sucked! God chose for this to happen to Lucy.. why?! That we may not know or ever know but I know that God loves and has a purpose for all He does. I'll try to figure out how to get a picture of Lucy to post so you can see this precious child. You can visit their blog at www.erikandkatekrull.blogspot.com

So we have had bouts of sickness for awhile now. Coop got diagnosed with the flu and pretty sure Lettie got it the next day. Lettie stayed with mammaw and pappaw over the weekend after Coop got sick and ran a very high fever and was fussy so pretty sure she had the same thing. All three of the kids made it through ONE dose of $145 worth of Tamiflu. Coop and Lettie both threw up after taking it and Jack gagged to the point of almost throwing up so after some frustration on my part of not understanding how they couldn't take a teaspoon of this flavored med I took 1/2 teaspoon myself and needless to say, after gagging, eating 6 oreos,and a cup of chocolate milk I still could taste that nasty stuff! It was TERRIBLE! I honestly don't know how kids keep it down. Well, after Lettie's fever went away she became very congested to the point she couldn't take her bottle so I had to syringe her meds in her. This led to an EXTREMELY fussy Tuesday which led to the doctor again on Wed for diagnosis of an ear infection! She is less congested but we are constantly having to suction her nose and it is so irritated to the point of bleeding. She is still not herself yet but slowly getting there.
A huge praise is that we have been 17 days without a seizure! It's been great not seeing those things around here. She is still having a lot of startling with sleep but hasn't gone into a seizure from it for awhile now. She will randomly wake from naps and start crying uncontrollably like something hurts so I don't know if her head hurts like a headache or it's fear... just not sure but I hope it gets better for her. She still struggles with development but we take it day by day. I try hard not to get bogged down by the negative thoughts in my head of worry for the future or the thought of the difficulties we will continue to face but it's really hard for me not to stay concerned about these things. I long for a life with THREE healthy, normal kids..not just two, but it is what it is and it could be much worse. She is a very loving and sweet baby that loves to be loved and we will continue to do that to the ends of the world for her! ( Funny that I still refer to her as a baby when she'll be three in June) For the rest of the family, all is going well. Jack just finished with Upward basketball and enjoyed it. Spring break is coming up next week so that's super exciting for him...NO SCHOOL! Coop is still talking ALOT and getting frequent spankings for her frequent disobedience but love her so much. She is starting Upward soccer soon and Mark and our friend, Laura, will be coaching her and Laura's daughter, Ella. She is getting so excited about kindergarten.. I just hope her teacher will be as excited as she is when she finds out what a "pistol" she has in her class.