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

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.

Well, my sweet,innocent, mild-mannered little girl has turned 5! Wait, I think I've confused those adjectives..those belong to Lettie and Coop is independent, strong- willed, opinionated, and most of the time, guilty as charged! But everyone needs a Coop, at least that's what Mark always says, but he's not with her as much as I am. All kidding aside though, my Coop is 5 and loving every minute of being "older". It makes me so sad to know that she will be in kindergarten next year. My babies are growing up so fast and it's tough to take. Coop can't get old soon enough. She told mine and Mark's mom the other day that she wished she was a teenager so she could do anything and go to the mall whenever she wanted! Are you kidding me?! This is out of the mouth of a fresh five year old. Mark and I have talked a lot about how mature Coop has always been and we're trying our best to keep that under wraps as long as we can. I love her so much but it frightens me when I have a 20 minute conversation with her about texting and realize it was a five year old I was just talking to and not a fifteen year old!
My mom decided to give Coop a tea party as her birthday gift from her and it was so precious. She got to invite five friends, the smaller the better and easier. The girls had so much fun! They arrived in their tea party attire and we did their hair and makeup first then they put on pearls, earrings, gloves and hats and par-"tead". Sharon, the party planner, gave them a quick etiquette lesson and the girls snacked on croissants, petit fours, fruit kabobs, cookies, pink lemonade, and tea of course. One of their favorite things was drinking from real tea cups. After tea, the girls put on a fashion show and then had cupcakes and opened gifts. It was such a fun party, especially for me because I didn't have to do anything to prepare, Sharon did it all and did it well. She even made the treat bags the girls took home and they were awesome. She made picture frames for a photo I took of them dressed up and filled the bags with homemade goodies and stickers. Sharon made all the food we had and it was wonderful, down to the crown shaped peanut butter sandwiches.
So the tea party happened on Saturday and Coop's actual birthday was on the following Wednesday. Little did we know she had plans for a celebration on Wed. as well. She told Mark on Tuesday afternoon that she wanted the whole family to go to breakfast before Jack went to school and then wanted us to "surprise" her with dinner at a fancy restaurant she had never been to but didn't serve fish or broccoli, unless it was broccoli and cheese soup. At least she wasn't specific, huh?! She also wanted me to take her to lunch at Apple Cake Tea room, just the two of us. Should we be concerned that all her birthday requests revolve around food? We got up very early and all five of us went to Perkins for breakfast, tea room for lunch and then headed to the mall with Coop's friend Ella, as well for dinner. The fancy restaurant changed to a smorgasbord of food from five different places in the mall...this was actually Mark's idea and Coop loved it! We then spent an hour in Claire's, and I really mean 60 full minutes, looking at "stuff". Needless to say, Coop had a great 5 year old celebration and Mark and I finished the night off very tired with a serious case of heartburn! If this was what turning 5 was like I cannot imagine what she'll think of when she turns 16!
Just to throw it out there, in case anyone is in need of a good party planner I'm going to post Sharon's info on my next post cause I lost the paper with her number on it, as usual!

So I took all three of my munchkins to see Mark at his new location, Children's Dentistry of Knoxville, yesterday. Mark is in the process of selling his practice at Cornerstone and transitioning to work with his buddy and fellow classmate, Darryl Phillips. Darryl is a pediatric dentist and owner of Children's Dentistry and he and Mark have been working on this transition for awhile now and it has finally come to fruition.He will continue to be at Cornerstone some for root canals and other stuff and also be at Children's as well. Mark absolutely loves it and I think it is a great fit for someone with his traits... big kid, jokester,video gamer, sports fanatic, total ADHD! Need I say more. Oh, and he knows the ins and outs of every Disney channel show Directv has to offer so that makes for easy conversation with the little people! Surprisingly all three of our kids were cavity free. Jack has always been great with brushing, Coop not so much. She starts chewing gum around 9 or 9:30 in the morning and follows with a fruit roll up, some gummies and then washes it down with a big glass of chocolate milk. She is very sneaky with her gum because she is told she cannot have gum till after lunch but somehow I pass her in the house and she's just chomping away! She's already had one "cabidy" as she called it and was so excited...she thought it was a good thing that she got to go back to see Daddy but Jack and I tried to explain it wasn't but you can't tell her anything. The best news was that Lettie's teeth looked good. We didn't do any x-rays but got through the cleaning with some crying and struggling but it wasn't near as hard as I thought it would be. Mark and Tammy, one of the girls at the office, did the cleaning while I held her hands down. She only bit Mark once and then we put a retractor in her mouth to keep her from biting. I got a good pic of her in the dental chair.. she looks like such a big girl! Makes me so proud and sad at the same time. She continues with daily seizures but we'll continue to ask God for relief.

So I guess it's been more than awhile since I've commented on the lives of the Brittons'. Where do I even start... Since my last post Lettie has continued to have seizures, back to daily, sometimes two in a day. They have gradually become more aggressive, just like our pre-surgery seizures so as you can imagine, very disheartening for us. I guess I haven't really posted in awhile cause I just hate talking about these... they seem to be taking up a large chapter, better yet volume, of our lives and I'm just tired of it and honestly angry. Mostly bitter on a daily basis. I'm sure most parents with a special needs child would empathize with how I feel...just crummy most days. This is not at all how I thought things would be post surgery, but I guess it can be best explained as, " God is in control." I will not lie and say that my faith has not tested during these times because it totally has! I don't want you to think I'm asking for sympathy because this is the life God has given to us, the children God has given to Mark and I to raise and we will take this challenge and do the very best we can given the circumstances. I will say to you that I do often yell and cry in the car on the way to therapy when it's just me and Lettie and say life stinks right now and just pray it gets better or that I will learn to handle it better.

Got some good pics when we went to the Fantasy of Trees. On our way to the car Mark was running with Lettie and she started cracking up and I got some cute pics of her!

We had some family pics made for our Christmas cards and it started snowing just before we left for our session, OUTDOORS ! They actually turned out great but we were only able to last 30 minutes of our hour long session because it was so cold. Lettie had a hard seizure right before we left as well so she doesn't look her best but got a smile in a few. Thanks so much to Tracey Ancelet for a job well done on these! A great photographer and sweet soul!

A little late on the Christmas news so I'll keep it brief. Jack and Coop had an awesome Christmas this year... air hockey table, indoor basketball goal, kinect for Xbox, vanity, cash register, and Coop got a desk with her own office supplies to set up shop! Coop told us she wanted her own office so Santa set her up! It's so much fun playing with the cash register and all that stuff. Jack is playing stuff non-stop with all the cool stuff he got. The basement is like his own Chucky Cheese with air hockey and basketball! Lettie racked up as well with Santa dropping her big gift off Christmas eve night.. a goldendoodle pup! Santa left a note on our front door that she had a gift he dropped off in her room because he was afraid it would get too cold in the sleigh while he had to drop all the other Christmas gifts off. We named him Ollie and hope to get him trained to be able to assist and provide companionship for Lettie. We know of a lady that trains goldendoodles for autistic children and hope to get help from her after we get him potty trained. Ollie is going to be big, somewhere around 60 lbs or so and this is a whole new experience for us since we have never had a "big" dog. He is already bigger than our other dog Bealie who is 7 and he is only 15 weeks.