Prayers for the Agnew family

I haven't posted in a while, but I have been reading everyone else's posts. I have been following little Maggie for months, her mom's blog is Agnew Family Blog. Maggie passed away in her mommy's arms last night. Please pray for Maggie's parents and her older siblings. And hug your babies tighter and more often.

Two "Snow" Days and a trip to Houston

Tucker was out of school for two days last week due to wintry weather conditions. It was pretty cold, but no snow or sleet, so I'm not completely sure why the schools were shut. On Wednesday night, I got a phone call at 11pm saying that schools were closed the next day. I figured that meant that Gina would be home, too, and wouldn't she love to sleep late? Not going to happen with Tucker going over! ;) So on Thursday morning, I got him up and ready, and he went over to GiGi's house (he pronouces it "g" like girl, not giraffe), he wakes up in the mornings asking to go to Gee Gee's house, forget Nana, Poppy, or anyone else who lives there! Haha, they aren't the main attraction! He was happy to go over there, but not too happy that Gee Gee was still in bed. He likes riding to bring her to high school every morning, she ended up locking him out of the room because he wouldn't leave her alone. He had a nice quiet day with my mom and sisters, and then on Friday, LSU was closed, so Chris and I were home with Tucker. On Thursday night Chris, Tucker, Sarah, and I rode over to Amy's house to get the money from the fishing tournament. It was amazing, it was all in a huge envelope. So on Friday morning we went to the bank to deposit it into Tucker's savings account. Then we ran a few errands, and Tucker enjoyed some crackers and licked a hamburger for lunch. He was very well-behaved and enjoyed the day out, then we all took a long nap. It was a nice day off of work and school. Friday night Tucker went to Sissy and Pops's house, and Chris and I went to Outback with Sarah and Brad. It has been months since we have been able to get out like that, and we had a very nice time. On Saturday and Sunday Chris and I both didn't feel too well, so we mainly stayed at home. It's cold season, it seems that everyone is just getting over being sick or just starting to get sick. I can't seem to kick this cold, and it is wearing me out. Tucker has been doing very well, he is talking a lot, and using a bigger vocabulary. We were supposed to go to the Mito Walk last Saturday to raise money and awareness for Mitochondrial Disease. Unfortunately, the weather in Houston was bad also, so it got cancelled. We left Monday afternoon for Tucker's Tuesday morning appointment with Dr. K. Tucker was very good for the ride, he watched Kipper on his DVD player and looked out the window for the hotel. He was very excited to be staying in a hotel again, even though it wasn't as nice as Give Kids the World. He laid right between me and Chris and had the biggest grin:) Dr. K said Tucker looks great, and we don't have to go back for 6 months. That is really good news. Ever since he has been on the mito supplements and we have been watching his sugars and changed his food, his whole body is healthier. He was not too interested in seeing Dr. K or her residents; he was much more interested in her spinning chair and the Metro train that was outside the window. When we go back in August, we will see Dr K, Dr P (the lung doctor and immunologist who specializes in mito kids) and the autism specialist who specializes in behavior. So it was pretty much a boring appointment, which is of course the best kind. We got to see Missy, who now works for Dr K, it was so nice to see her and talk to her for a bit. We also saw Ali and Alex for a short time in the waiting room; Alex had a very bad infection over Christmas, and the quick action of the mito doctors and PICU doctors saved his life. He was all smiles, telling me about Pokemon characters I had never heard of, haha. After the appointment, we rode the train in the park a few times, ate a burger at Smashburger (Chris actually liked a place that I picked for once!), then headed home. Tucker was good for the whole ride, until we got home. We told him we were going home, but he cried so hard for the hotel! The next time he goes to a hotel will be in May (for Jackie & Justin's beach wedding) or maybe in April (for the Mito family get together that we hope to attend), so he will have to wait a while. I started a new job on January 3, and it is going well. It has been a major life change, and we are all still adjusting to it. January was such a very busy month, and it doesn't seem like anything is slowing down soon, but we are trying to get setteld into a routine. It is so nice to have Chris at home, now that hunting season is over and he does not have the pressure to work overtime every weekend, he is starting to run more errands and do more with Tucker and the housework. We still haven't figured out how to get everything done....the house is a wreck! But Tucker is doing well and hasn't been sick for all of January (knock on wood! I almost hate to type those words, that usually jinxes us.), so we are counting this new job as a blessing and a very positive change. We will be working on potty training (again) and setting up summer therapy plans over the next few months. Thanks for checking in on us and for all of your prayers.

The last 6 months

It's been a little over 6 months since Tucker was diagnosed with Mitochondrial Disease. We have had 6 months to process the news, and some days I feel like we are still in shock. Warning: this post will be brutally honest, you may not want to continue. The day that Dr. K told us Tucker had mitochondrial disease, all of our hopes and dreams flew out of the room. We had worked so hard and hoped for so long that Tucker had some genetic problem that could be cured by some gene therapy or magic pill....or that we could put him in some new medical study, and they'd have him "fixed" before we knew it.... I really expected to leave Dr. K's office that day feeling confident that the mitochondrial testing was a dead end, but still glad that we tried that route. I was so deep in denial at that point, and clung to any hope that my child would one day be "healthy", "whole", or "normal." When Tucker was born, we got our one-way trip to Holland....we just didn't realize it, always hoping to somehow take our precious boy back to Italy with us....the day we got his mito diagnosis, we realized "we were in Holland, and in Holland we must stay." Over the next few months, we learned how to best care for Tucker. We never go a long time without feeding him (mito kids need their nutrition), and know that sometime, maybe soon, we will move to more continuous feedings to help him with his energy levels. We added 3 more supplements to his regime, and I had to come to grips with the fact that for as long as Tucker lives, we will be adding medicines, not taking them away. We use Tucker's stroller and/or grocery carts anytime we can, so he doesn't waste energy on walking places. As he gets bigger he will move into a medical stroller (aka wheelchair) which will come with its own emotions. We watch every behavioral cue to catch sicknesses or new problems when they first emerge. We also started Tucker in all day special needs preschool, which had been a goal of mine for a long time. He came home exhausted and frustrated, and I wondered if we were all pushing him too hard. He started hitting everyone-kids, adults, animals, and I worried that he was getting out of control. In October, a stomach bug went around school, and while most kids were out for 1 or 2 days, Tucker had the most disgusting diarrhea for 12 days....and missed 2 weeks of school. At the end of October, the diarrhea came back with the introduction of Glucerna, as his blood sugar levels neared 500 on some nights. Looking back, without a mito diagnosis, I probably would have lost it at that point....why is my "healthy" boy having all of these issues?? But with the mito diagnosis, I knew to "expect" these problems, and I had a doctor and a group of parents to turn to with questions and frustrations. I also came to the realization that Tucker was never going to be in a normal classroom, and if he is for parts of the day, he will likely have a one-on-one aide. Tucker will be 5 years old soon, and it is SO hard to look at him and realize he may never read or write. We know that the mito affects his nervous system in so many ways, and it has robbed him of the boy he could have become....that makes me so mad!! Yes, he is growing by leaps and bounds since we started the mito protocol....his speech and cognitive skills are exploding, but it only takes 5 minutes with a "typical" toddler to realize that Tucker is so behind that he will never catch up. I worry about his same-age peers, and when they will realize they have outgrown him both socially and cognitively. Right now, kids love to come over and play with Tucker-he has cool toys, he has fun parties.....but that will only last so long. There will be a time when Tucker is not invited to birthday parties or social events....and my heart breaks at that thought. His friends will become younger and younger than him (at least we know there are lots of younger cousins in his future!), and while he may never care, it is hard for us to think about. For years, I focused on how strong Tucker was with gross motor skills. No, he couldn't talk or eat, but you should watch him run!! As he gets older, his physical problems are much more obvious. He doesn't walk or run normally, and has a hard time with swimming, throwing a ball, and pushing himself on a swing. The dreams of watching Tucker play on a baseball team or run all over a soccer field have also gone away in the last 6 months. I have always been a planner and a worrier....Chris is the laid back one. But for months I could not look more than one day in front of me....it is really a crippling feeling to not have any idea what your child's future will look like. Will we be taking total care of him for decades, with ever-increasing medical care? Will something happen to us, and someone else will have to step up and cover this care? Am I worrying about all this for nothing, because he won't be around in a few decades, and I will have to deal with that devastating loss for the rest of my life? It was hard to get through each day, not knowing what the next one would look like. We still feel that....I think for anyone who knows us, the real change in Chris and me over the last 6 months is an obvious change....we don't have the spark in our eyes we used to have, we get frustrated more easily, and good gosh, we weigh more!! I looked at a few pictures of myself the other day, one from June and one very recent, and I thought, my goodness, how I have aged in 6 months! We carry a big burden, and it is wearing on us both emotionally and physically. I have become much closer to Christ in the last 6 months. My cry to God has changed from "fix him!!" to asking him that I can somehow make Tucker's story reflect His great plan and work in us all.....that He would somehow give me the strength to get through each day and keep smiling, hold my head up as life continues on all around us. I think this experience has really and truly broken me down, brought me back to the real goal of life, which is to honor God and bring people closer to Him.....and if there is one thing Tucker is amazing at, it's bringing people to God and inspiring them to press on no matter what. This doesn't mean that God doesn't get an earful everyday from me! I am mad!! But over and over Tucker shows me what really matters in life, and no matter how hard it is for me, I am learning more each day. The KLOVE challenge (a Christian radio station) is to pick one word for 2011 and stick with it....to try to live out that word and try to have that word speak to you. Some people called in and picked "discipline" or "love". The word that popped out to me right away was "Hope." I feel like I lost so much hope, and I need it back. Ever since I picked that word, I have seen it everywhere....in emails, blog posts, Bible passages, in songs.....and after last Saturday's huge outpouring of love and support, I am full of hope for our family. We will keep going and giving all we can to help Tucker to be all that he can be....my hope is no longer that he will be something he was never meant to be. My hope is that I can lead him on this journey to the best of my ability, and that I ask for help when I need it and am able to be myself outside of just being "Tucker's Mom". My hope is that I can help other families dealing with prematurity and mito, just as other families have helped us. I will cling to that hope in 2011....so far, it is helping me get through each day.

Fishing for Tucker=Huge Success!!

Past the seeker as he prayed came the crippled and the beggar and the beaten. And seeing them... he cried, "Great God, how is it that a loving creator can see such things and yet do nothing about them?" God said, "I did do something. I made you." We are so thankful to the people who answered God's call to help us, and in the process put on an amazing event and brought an entire community together. I can not begin to describe last Saturday's bass fishing tournament-Fishing for Tucker....it went better than anyone could have imagined. The first time I heard about a fishing tournament, I was a little skeptical...who would actually pay money to go fishing? Haha! Why would anyone want to attend a "weigh-in" and how does that raise any money? So for anyone who doesn't know, these men (and one woman!) pay to fish, then they compete to catch the biggest group of fish, then the top 14 contestants are paid prize money. 75% of the money goes back to the fishermen, and this event still raised over $7,000. On top of this, sponsors and donations brought in another $12,000. So we are still in a state of shock....but just imagine the possibilities of how this money will impact Tucker's life and future, as well as the HUGE weight that has been lifted off of my shoulders, Chris's shoulders, and our parents' shoulders. It was hard to really grasp the stress level we have been under for years until we have had it lifted like this. What a relief. My cousin Ryan envisioned this tournament months ago, and his wife Jenny, his sister Amy, and her boyfriend Eddie (who is also Ryan's best friend), have worked for months to make this event a reality. Ryan's bass club, the Ascension Area Anglers, held the tournament, and most of the members fished in it. So many others joined them, including my sister Sarah, my aunt Susan and uncle Joey, Mrs. Mia, and my friend Lauren who got so many sponsors and donations...all the men who got up at midnight to go check in boats, and stayed awake for 24 hours....the list goes on and on....if I don't list you specifically, please don't think that your contributions are forgotten. Ryan chose the date because professional fishermen could use Tucker's tournament as practice; it was the first tournament of the year, and while the prizes weren't huge, it was a good chance for the fishermen to get an idea of where the big bass were for the next tournaments. We could not have asked for better weather. It was a BEAUTIFUL day!! I vaguely remembered someone saying that having 50 boats sign up for our first year (yes, this is going to be an annual event) would be phenomenal. 20 men were out at 2am at 3 different sites to check-in boats; I was shocked to learn we got 74 boats!! I was even more surprised when I heard that there were too many volunteers....way too many, actually...people were standing around wondering what to do. All of our cousins were out (and I'm talking third and fourth cousins), from hours away, to volunteer. Friends of ours, friends of friends, church members, and in-laws of our siblings were there. So many people went above and beyond that day. 700 plates of delicious jambalaya were sold, along with tons of sweets from the bake sale. I put out two tri-fold Science Fair boards...one about Tucker, and one about Mitochondrial Disease. We had tons of "Tucker" items, like a firetruck, Mickey Mouse, the Mito Turtle, and his Mickey ears from Disney. I put out the poem Missy wrote "So Full of Pride" with the Mito board. My 10-year-old cousin Morgan held up a huge sign and stayed by the "Tucker" table for over 3 hours telling people about Tucker! My sister Sarah made hundreds of mito awareness ribbons....it was amazing to see a crowd full of people wearing them. My main duty for the day was to keep the star happy!! Which is much harder than it sounds;) Tucker woke up early, but I fed him and got him back to sleep. By 11am, Chris had come home for a nap and left again, and Tucker was pretty mad to be left behind! On Thursday evening we had a run-through at Cabela's (did I mention that Cabela's hosted the whole thing, and Cabela's just happens to be one of Tucker's favorite places!??) and Tucker got super over stimulated and ended up screaming for hours Thursday night. It was a huge meltdown that I did not want repeated. So everyone had strict orders to NOT let Tucker inside (he loves the escalator and elevator, but once he starts riding he literally can't stop.) I fought him all day on this, but luckily there were plenty of people to help me, as well as a big Firetruck to look at!! (My BIL Chris called in some of his buddies, and as long as they didn't have calls, they parked at Cabela's and let the kids climb on the truck.) We did spend a good amount of time in Daddy's green truck pressing buttons, which is usually a no-no, but by weigh-in time, he was very well-behaved and happy. For the weigh-in, fishermen lined up with their boats, we had volunteers sign them in, get the fish out of the live wells, carry them up the stage, then weigh them and record them. This was actually pretty fun! The crowd stood around and Lyle Johnson was the emcee....people really got into it. After all the fish were weighed, Amy and Jenny ran inside to tally the results. In the meantime, we gave out door prizes....and thanks to Sarah and several other amazing volunteers, we had some GREAT door prizes! The fishermen loved them, and over 40 prizes went out. After this, a professional fisherman came up to talk a little about his job and how it feels to fish against famous guys. Then Chris, Tucker, and I went on the stage to give our thank yous and our speech. Here it is: "Hi, we are Leigh & Chris Townsend, and this is our son Tucker Ray. Thank you all for coming out to support us today, we are overwhelmed by the amount of love and support that has come to our family in the last few months. On May 26, 2006, Tucker was born 13 weeks early, weighing only 1 pound, 11 ounces. He had a host of medical issues, and spent 8 1/2 months in the NICU. He came home with a ventilator and trach, and also has a g-button because he could not eat by mouth. While Tucker has outgrown many of his medical issues, new ones have come up and he continues to take many medicines and see quite a few doctors. In July of 2010, we discovered that many of his medical problems were not due to prematurity, but another disorder: mitochondrial disease. Tucker's cells can't produce enough energy to perform vital functions, such as regulating his blood sugar, giving his muscles tone and strength, and helping his brain learn like other children. Tucker has a depletion syndrome, meaning that his condition will get worse, we just don't know how or when. By donating to our family, you all have ensured that Tucker will get the care he needs and the best chance to live a normal life. Tucker has taught us all so much. He lives for the moment, doesn't take no for an answer, and loves to get messy. He has gone through more in his life than most people ever will, yet he has a joy for life that is amazing to see. He has faced many obstacles, and has more ahead; thank you all for coming out today and reminding us how many people love our son, and that we are not alone. Thank you" We gave Amy & Eddie and Ryan & Jenny a small gift (Tucker's handprint turned into a fish, it was pretty cute, I think!). Then they announced the winner, but by then Tucker and I had headed inside! We rode the escalator and elevator 5 times, then we went back out and into Chris's truck with little screaming, and no tears. Yay!