The Adventures of the Brittons

Lettie continues to have daily seizures. Her new medicine, Lamictal, has been in her system for almost a week but Dr. P said it could take several weeks to see any results from it because we have to increase it so slowly. It will take 8 weeks to get to her correct dosage for her size so maybe this will do the trick along with some help from God, I keep praying. I'll try to get a good picture of her tomorrow to post because her hair is growing back so fast and getting longer each day. It's sad to see what a big girl she is becoming so fast ( and when I say big I'm especially referring to her precious 22 lb. body I tote around with me everywhere I go like an accessory). She is a happy girl most of the time but we still long to hear words come out of her mouth or the chance to see her crawl or maybe even walk some day. These are our loooong term goals I guess so patience is what we need. During her new seizures she sticks out her bottom lip and cries and it just breaks your heart. I think she understands more and more that something isn't right and it scares her. I pray this will stop soon and she will have freedom once again from these seizures.

Well,I guess you can look forward to another "eventful" week in the life of the Brittons cause there is truly NEVER a dull moment with us, good or bad.. guess that's the way our cookie crumbles..... however I'm looking for a really hard, stale cookie in our future that stays intact!

We are starting a new medication, Lamictal, tomorrow to hopefully help with the new seizures. She actually just had one about an hour ago when we got home from therapy. Life must go on and hopefully these ridiculously, rotten, evil seizures will subside soon, especially for the holidays! I mean what a bad time to return, you know! They could've at least waited till January 2!

Jack has had a fun week at school. He got to dress up on Thursday for the 50th day of school like the 50's and Friday was scarecrow day. Coop helped feed Lettie for the first time this week as well. It was fun to watch her take that "Mommy" role she loves to portray so often with Jack and Lettie. She talked to Lettie just like I do and did such a good job. Now if I can just get Coop or Jack strong enough to help tote Lettie around my back will be very thankful. I've often said I need to have a plastic surgeon attach a pouch to the front of me like a kangaroo and life would be so much easier carrying Lettie around! Bless her soul, she loves to be carried and is in no rush to crawl or walk.... then she would have to work some and she hates to work! I will be posting our Halloween pics next so don't let the anticipation overwhelm you! Coop and I are vampires, Lettie is a pig, Jack and Mark are the GI Joe characters, snake eyes and Cobra commander. See you soon!

This absolutely breaks my heart and as transparent as I can be with you all, I am having a very hard time lately with all of this. I find myself getting angry at God for all of this and then crying for forgiveness that at least we don't have seizures. Lettie is just so precious and my heart aches so much for her to have a life where she would be able to enjoy Jack and Coop and run and play with them. I also know all too well, that may not be God's plan for my Lettie and recently that has hit me very hard. Some days just honestly suck! But I try my best to take each day as it comes and pray every moment I get for absolute healing for her.

My other two munchkins are doing well. Coop is still playing soccer and school is going well for her, no trouble yet thank goodness. Jack has finally found some outdoor activities he likes- basketball and biking. He is going to play Upward basketball in November and is loving his new skill of riding a two wheel bike! They are all such great kids and I cannot complain when God has given me such precious treasures to take care of . My friends mother in law gave a book recently called, " Relax, God is in control." She had tagged a page she thought reminded her of my situation and it reads, " I know God will not give me anything that I can't handle. I just wish He didn't trust me so much." Can I get an Amen to that!

The weather was great and perfect for Lettie to get out since it wasn't too hot. We only dined out one time for lunch and hung out in the condo for most meals. Trust me, with that many kids it so much easier and enjoyable to just stay in and cook. The kids actually love it more cause they hate to wait for a table. Dennis and Lisa's twins, Bode and Stella, are walking now so they enjoy having more freedom and room to roam. They were both so sweet with Lettie. They would walk over to her in the beanbag and love on her and watch her.

The ride home was long and eventful, as our life usually goes. On one of our stops, Jack got a huge Twix ice cream bar and a sugary drink to enjoy as we traveled along the curvy, mountains of North Carolina and shortly after vomited everywhere in the back of the van. Gotta love being a mom at those times when your holding a bag for your sweet child trying your best to not gag and vomit yourself. We stopped and got him and the van all cleaned just as Lettie pooped everywhere! I'm glad I have a strong stomach! Of course Coop is holding her nose the entire time letting us all know how gross it all is....like we didn't already know that! All in all though, the trip was much needed and we had a great time.

After our hayride to the pumpkin patch , we headed back to our house to carve our pumpkins and toasted our pumpkin seeds. Jack and Coop only made it a total of 10 minutes with their pumpkin carvings and I had to finish them, but that's fine!

Jack is still not a huge fan of school, but he is tolerating homework better and doing well in class. He has had three spelling tests and made a "100" on each of them so that's a good start. His favorite part of the day though is still coming home and riding his scooter in the driveway.

Coop is still Coop. She is full of energy and attitude. School is going good for her and she hasn't been in trouble yet which is unbelievable and wonderful. Soccer is going better in that she didn't cry last week but doesn't really get near the ball either! It's kind of like watching Jack play just in Coop's body! She went to her first UT game with Mark on Saturday and loved it! When she got home she told me they had "pecans" at the game. I was confused of course and asked her again what she said and she said " You know those girls on the field with those pecans." I had to hide my face when I realized she meant batons! It was another funny Cooper moment. I love those moments!

Finally, to Lettie bug! She is still seizure free! It's ten weeks today and we're praying constantly we continue on that track. We had our follow up appointment with our neurosurgeon and neurologist this past Wednesday and Thursday at Vanderbilt. Dr. Pearson, our surgeon, was pleased with how Lettie's incision looked. She has a small knot on the right side of her head that we noticed a couple of weeks ago and thankfully Dr. Pearson said it is a clamp that is holding her skull together. She actually has four more along the right side of her head. He was glad the tone on her left side wasn't rigid but did say he thinks she will have more of a helper hand type of recovery on her left side. He did say that he would expect some more movement to return in the future. We continue to pray for functional movement to return on that left side because Lettie still doesn't have any in her arm or leg. Dr. Paolicchi, our neurologist, was pleased as well that we have been seizure free but Lettie's follow up EEG which was done last Wednesday didn't show great results. She has abnormal spiking on the left side of her brain, her one and only good side, that shouldn't be there. The spiking is located in the parietal and frontal lobe and the EEG showed spiking specific to her speech regions. This would explain why she is having difficulty with things like repetition. We work so hard on "Ma,ma, ma, ma" and that explains why she can't repeat it to us. Dr. Paolicchi decided, from what she saw on the EEG report, to keep Lettie on all the same meds because seizures can easily return with the spiking she is having. Lettie didn't have good reflexive responses on her left foot either which concerned Dr. Paolicchi as well. Time will tell how it all turns out. We will continue to pray fervently that God will miraculously heal her in His time.

As you probably would expect, these weren't the results we had prayed for but as we have learned God has a plan and it's not always the same as ours. We continue to praise Him for stopping the seizures and we will continue to ask Him to heal our Lettie bug! We love her so much! I look forward to posting on a more regular basis. Thank you to those who keep us on their prayer lists.

Jack is liking school a little better, still hates to do work & read but it'll get better with time. He has such a sweet heart when it comes to Lettie though. God knew what kind of brother she would need and provided.

Lettie is still going strong seizure- free! It is so awesome to be able to say that! She still doesn't have much movement on her left side and her arm is still very weak but we continue to pray over her daily, if not hourly, for movement and strength to return. We should be getting her new orthotics this week or first of next week and those will help with standing. She is eating so much better. I would say she's close to her old level of eating now, which is a miracle from where we were. We continue to love to hear her babble and make new noises. Sometimes it sounds so close to real words my heart just stops! I so badly want to hear her say "mama" and look at me I tear up just typing that ! I got her a beanbag today and she loves it. It is so great to sit her in it with Jack & Coop in the floor. We can position her with support and she seems to really like it. She feel asleep in it tonight and I got a good pic for the blog.

Mark is holding up better since last week. Today made a week and we don't really talk about it much or bring up Schotzy's name cause we both seem to tear up and lose it. It's best to just hold on to the memories and not really bring it up. It has been a comfort though to have Bealie around as well to keep our minds off our loss. I can't imagine if we didn't have her, it would seem so quiet and I think we would ponder on it more than we do now.

Let's continue to pray for left side movement and being seizure free! We are so blessed to be able to say that and I pray we will continue to have that opportunity.

What a year this is turning out to be for the Britton's again. For those who knew us last year, it wasn't much easier. I always like to tell about our year in our Christmas card and last year I had to type an extra page to fit it all in. Mostly about Lettie's seizures starting and Mark had a couple of medical issues himself that didn't go as planned.... imagine that with our luck! Well life will get easier to handle and we take it day by day. God still gets the glory in the end for us and we love Him tremendously. Lettie's urine test yesterday was normal, Amen to that! So no more UTI and we are still seizure free... 44 days and counting. Tomorrow will mark the longest we've ever been without a seizure so prayer warriors get on those knees and keep us lifted up!

Lettie has been working hard in therapy and eating better, thank the Lord! She still doesn't have her full appetite back but it's so much better than it was. We are completely off the keto diet. Her left side movement is still sporadic and not functional yet but we are still praying everyday for God to work miracles on her and allow that side to improve. She got fitted on Thursday for new orthotics and they should be here in three weeks or less. These will really help on the left side to give support to her knee that buckles when we try to stand her. She continues to babble some and it's like music to our ears! We love to hear any sounds she makes. Yesterday marked week six of no seizures! That alone is a miracle from God. Mark & I were in the car the other day and he asked me what I thought stopped the seizures and I said, "God just decided to let them stop." He agreed. God has provided us with this wonderful blessing and pray relentlessly that he allows it to continue!

I would like to thank all those who have been providing us with meals. It has taken such a burden off of me while adjusting to the new schedule and we appreciate it more than words can express. I have enjoyed being home more and more each day and am adjusting to Lettie's new needs. Bathing is tough, but I have got it figured out on my own so I can do it by myself now. It's hard to get her in and out because of her left side weakness and we have to be extra careful lifting her because her left arm is so weak we could easily sublux her left shoulder without meaning to. Jack and Coop loving having Lettie back at home. They love and kiss on her so much and she loves it. Jack and Lettie fell asleep in my bed the other day and I got the cutest pic of them. He put his arm around her in his sleep. What a great big brother! I love them all so much and thank God for being home and blessing us with them all, so different but so precious!

Coop starts school tomorrow and it marks the first day that everyone is either in school or therapy.

We spent most of the weekend conquering what I would called organized chaos in our house. My mom came by today to help me finish up and it took all day! That sounds so terrible as I post this so please don't think we live like pigs but living in my "one room apartment" for so long at Vandy and then in Atlanta caused me to accumulate too much stuff and the other half of my family has a lot of trouble putting things back where they found them. I'm sure many, many of you mothers out there completely understand what I'm talking about! Gotta love them though cause life would be so boring and "clean" without them. It sure makes life interesting.

Next week is gonna be a little crazy, but manageable. Monday I have to take Lettie to Children's for a kidney test since she has had 2 UTIs back to back we want to confirm this last one is cleared up and her kidneys are functioning properly. Pray that this test goes ok. We also have an appt. with our rehab doctor, Dr. Weinstein, Monday afternoon. It will be good to hear her thoughts on Lettie's physical prognosis and any ideas to help us regain left side function.

Jack is liking school better and better each day. He really likes his teacher and that is great! Cooper starts back on Tuesday. We met her teacher yesterday and most of the kids in her class were at open house. She has 18 in her class and I pray this will be a good year for her. Last year she had a few behavior issues when things didn't go her way so I hope this year is easier. But nothing is ever really easy with Coop! Love her though.

We're hoping to finally get our house back into presentable shape this weekend. I still haven't got everything put away and organized since I've been back. It will be great to get everything in it's right place...I'm sure it won't stay there for long, but at least I know I've tried. I have some cute pics of the kids hanging out and just enjoying each other.My mom got Lettie this little motorized car that we can steer for her and she got in it tonight for the first time. It was so cute. We tried so hard to get her to smile, but no luck. She did however decide to relax her right foot on the windshield! Sorry it's been so long since I've posted, but life seems to be a little busier here than it was in rehab! Still glad to be home though!

   Lettie is doing ok. She is still not eating. Surprise, surprise! She stayed the night with Mary & Paul last night and tonight because Coop has been running a low grade fever the past two nights. Coop acts fine, just keeps getting these temps at night and we don't want Lettie anywhere close. Lettie will be back in the morning for me to take her to therapy and Paul's gonna watch Coop. It'll be so nice to be back at Methodist and see our therapists. It's been so long and I know they're excited to see Lettie as well. We went to see Dr. Blevins yesterday, our pediatrician, and he was impressed with how she looked. She weighed 22 lbs. so it's good she hasn't lost any weight with these new eating habits she has! Dr. B and some of the nurses circled up and prayed with us before we left the office. Once again God has provided us with a wonderful and supportive team to join us on this journey. 

   Paul, Mark's dad, told me yesterday that a friend of his wanted him to tell me to always remember "I'm too blessed to be depressed." I couldn't agree more. Now I just have to remember to live my life that way and allow God's blessings to shine through me and not the little things that try to get me down. 

Today was a blessing! We went to church and wore our Lettie bug shirts and tons of people at church had them on as well. How cool is it to see our entire worship band decked out in Lettie bug shirts? Pretty cool! This morning Jack graduated from the preschool class to the children's ministry which was so sweet and all the kids wore a cap & gown and got "diplomas" from Pastor Scott. Sarah, our preschool director, did such an outstanding job on it. Our family went up front and I gave an update on Lettie and thanked our church family for their support and continuous prayers. That right there is one of those miracles God has done through Lettie, me speaking to the congregation, cause let me tell you, I do not like public speaking at all, but I felt led to do it and God gave me the strength to do it, and it wasn't really that bad at all. It felt so good to be at church and get loved on by our friends and church family. We continue to ask for your diligent prayers for Lettie. She is STILL not eating! She drinks and gets her meds through her bottle, but the kid will not eat. It's like a steel wall trying to get a spoon in her mouth. She acts ok though, not like she's weak so I guess God is providing for her needs. Please pray for feeding, functional movement on the left side, and no seizures. Today made 4 weeks since she has had a seizure-can I get an AMEN on that! She continues to wake very startled at times but no seizures, so that is awesome. I got some cute pics of Lettie's homecoming signs Gigi had made for her and some in an adorable dress that Dr. Jamie Williams and his wife sent to Lettie. She wore it to church this morning and is so precious and check out the bloomers as well! We want to thank them so much for the dress and I also want to thank the ladies at MOPS, my hair salon, for treating me to a much needed cut and highlights yesterday. God has put such sweet and giving people into our lives and words don't do justice how grateful we are. Thanks for your continued prayers and support. Jack heads back to school Tuesday (YUCK !) and we head back to therapy Wednesday. Our new schedule has us in Oak Ridge Tuesday- Friday, but I take Lettie Tue./ Thur., Mary & Paul go on Wed. & every other Friday so it's not gonna be so bad. You gotta do what you gotta do for your kiddos and I'm sure not gonna complain cause at least I get to come back home everyday and be with my family. There's just no place like home!