Thankful

Thanksgiving was a few days ago, so I thought I would explain a few of the things that I am thankful for (the list is really much longer, but I had to stop somewhere). I am very thankful for Tucker's amazing improvement with speech since last November. Last November he got his trach out, and around January he really started talking. Since around September, his speech has just taken off, and it is amazing to watch. Tucker has been using the words "mama" and "daddy" very often lately, and with meaning. The other night, it was raining, and he was scared in his bed. Chris went in to soothe him, but he requested "mama," I was elated. Last night, he called me down on the floor, "mama, puzzle" so we played with his ABC puzzle together. On Wednesday, Tucker had a big meltdown at Chuck E Cheese for Michael's birthday party. I had to drag him out of there kicking and screaming. He screamed and kicked the whole way home, and Gina and I could swear he screamed "Daddy, help me!" because he knew he was punished once he got home with me! We have waited SO LONG to hear these things from his mouth, and for years we thought they would just never come. I am very thankful for the professionals that work with Tucker. I feel that the perfect people have been put in Tucker's life as his teachers, therapists, and doctors to guide us along our way. This year Tucker started seeing Dr Koenig, and she has been a huge help and guide to us. It is hard to say that I'm thankful for a mito diagnosis; I'm not there yet, and may not be for a long time, but I am thankful that we have an answer and a place to seek high quality care for Tucker. I am thankful for the great health insurance Chris gets through his company. I complain about the insurance a lot, but they really do offer great coverage. I am always having a fight with them over therapy, medicine, or some other issue, but I always win. When a physician is hesitant to order a test or procedure due to insurance issues, it usually turns out that our plan covers it. Mitochondrial disorders are a young science, and therefore not well understood or covered by the insurance companies; Tucker has had literally thousands of dollars worth of genetic and metabolic testing done in the past few years. We never expected it to be covered, as I've heard many other parents have issues with these tests. So far, it has all been covered at 100%. We have many out-of-pocket costs related to Tucker....the list goes on and on and always will.....but we are very blessed that our insurance covers so much. I am thankful for amazing friends and family who have stood by us over the last 4 1/2 years and really "get" what we are going through. Friends who call me regularly, and when I say "Oh, I'm fine" they see right through that and ask "Okay, now tell me how you really feel," and they actually want to hear it. Friends who bring out laughter and tears, and who are always ready for a Girl's Night when we all need it. My siblings are amazing as well....our family functions in such a way that when something happens to one of us, we all feel it.....I know that Tucker affects everyone more than they let on, both good and bad. It is comforting to know that we are not alone.

I am also thankful for my medical friends, meaning the moms of other preemies and mito kids. No two kids are alike, and I've given up on looking for a child exactly like Tucker. He is one of a kind!:) But knowing that there are other families out there leading similar lives, dealing with numerous medical and behavorial issues, understanding our pain and disappointment, as well as sharing our joy and hope, has made a huge difference in our lives.

Chris and I are very thankful for our parents, and lately Tucker is VERY thankful for his grandparents! He asks for them all day, and once he leaves one set he is asking to go to the other set. For a long time Tucker was a homebody, but lately he has been spending much more time with his grandparents. He just loves being with them and really enjoys each visit. He also loves my four grandparents, and he was thrilled to see all 4 of them on Thursday. He has favorite toys and activities with each of them, and all 8 of them love him so much. I am also very thankful for my mother, who has continued to amaze me this past year. As I have become overwhelmed and exhausted by caring for Tucker, she has stepped up repeatedly. The doctor visits, therapy consults, internet research, trips to Houston, daily phone calls, running errands for me and preparing more meals for us than I can count....treating me to lunches and other events so I can get away for awhile....again the list goes on and on. She often knows when there is a problem or what is bothering me even before I do. People often wonder how I do what I do, then they meet my mother, and realize what an influence she is on me. The other night, we had a meeting for a benefit in January called "Fishing for Tucker." (I will post more details on that very soon.) I was so amazed at what is planned to help our family, that I almost forgot to say Thank You and explain what the funds will be used for. My mom piped up at the end of the meeting to thank everyone for their hard work and volunteering to help us, as well as explaining that Tucker has a long road ahead of him and we think right now is the easiest and least expensive part of his journey. She told my cousins how much this event will mean to us and how much we appreciate it. I couldn't have said it better.

I am so, so thankful that Chris is my husband and my partner on this journey. We have been married for almost 6 years; Our wedding day was the happiest day of my life. It really was a perfect day with our family and friends and the beginning of a great marriage.

Having a baby changes a marriage in many ways; for us, the day that Tucker was born, we went from being just Chris and Leigh to being the leaders of Team Tucker.....our time and energy has been spent learning all about Tucker's issues and how to best care for him, how to give him the best life possible, as well as keeping everyone in our lives informed of his progress. We always viewed this as a temporary situation (denial works wonders), then the day we got Tucker's mito diagnosis, we realized Tucker was never going to outgrow his issues or "get better." We know the statistics-an alarming percentage of marriages don't make it through the NICU, through having a child with a chronic illness, through having a child with autism.......It has not been easy, in fact it seems to get harder every day.....yet, 4 1/2 years later, here we are, planning and praying to beat the odds. Chris is an amazing father to Tucker and a great husband to me. He sacrifices so much of himself to take care of Tucker, and none of it goes unnoticed.

I am of course thankful that I am Tucker's Mommy, he makes my life interesting and worthwhile. I love him so much, and I am thankful that God sent Tucker to us all to teach me and many others so much about life.

Behavior Issues

Tucker started his Neurontin on Saturday. I haven't really seen any changes in him at home, but he did actually swallow some sorbet today at eating therapy....after repeatedly hitting the substitute OT (Mrs. Terri is on vacation) and throwing a few fits. Today was one of those days that I wonder why we even make the 45 minute ride out to therapy. Tucker usually throws a fit in the waiting room if we have to wait longer than 30 seconds. I actually threatened to take him home today without having therapy...that stopped the fit for about 1 minute while he thought about that. He was bossy to the OT, and while she was very patient, it was tough to watch. He was very out of control today; I know he really can't help most of it, but I still wanted to punish him by taking him home! Tucker is in a new "testing" phase, where he is trying to push us as far as he can until he gets in trouble. He's been doing things like cracking an egg into the rug, smashing chips all over the floor, splashing in the toilet, and pouring juice in his toybox. The other day I told him he could pick one bag of chips in the store as a prize for being SO good at the cranialfacial appointment. I assumed he would pick one of the 99 cent bags at his eye level....of course not;) He chose one of the $4 big bags, and all I had was $1. (I didn't want to put the $4 bag on my debit card, plus he doesn't need a big bag every single time.) I told him he had to pick a small one, and that was a nice enough prize. He threw a fit in the aisle, then I finally calmed him down enough to get him to the counter and pay for the small bag. He climbed into the car nicely, but then threw the bag at me as I drove out of the parking lot! We are not quite sure what to make of this new behavior; we all think he is actually developing cognitively, and therefore pushing his limits and testing his environment. It is very frustrating, though! We are working on different discipline tactics, so far time out, taking toys away, and distracting him aren't working. I think that another part of the problem is that Tucker is SO good about 85% of the time. He really is a doll usually, so cute and sweet....but then the 15% of the time that he's more kid-like (haha), it's like he goes from sweet Tucker to crazy Tucker out of nowhere. I always wonder if it's just his way of showing us that he is way too tired, or just that he wants attention. Tucker has a very hard time communicating with us; even though he talks much more than ever, it is very hard for him to get his immediate needs across, especially when he's excited. He is much more likely to hit someone instead of saying "Hi, I want you to play with me" or "I'd like a chip, please." He just hits or pulls on them, even though he knows the words. This starts the whole process of "no hitting," and then him saying "I do-ee" meaning I'm sorry! Then we have to get to the root of the problem, meaning what he was trying to say in the first place. I know that every parent of a toddler faces these issues, but with Tucker, every issue is so much more complicated. First of all, pretty much every new skill he masters makes us happy, whether it's climbing stairs or cracking eggs....he really does amaze us everyday. So once we make a big deal out of something, he wants to do it all the time. He just doesn't understand the appropriate way to do things. For example, he really likes to crack eggs for baking and when I make his blended food each week. So I encourage this so that Tucker can be involved and learn something. But he doesn't understand that going into my grandma's fridge and cracking her eggs is NOT allowed! Another example is that Chris and Tucker love to wrestle. Tucker pretty much attacks Chris every time he is laying down to watch TV on the rug. Well that's cute and no one gets hurt, but Tucker doesn't understand that only his Daddy really wants to play like that. At a birthday party last week, a bunch of kids were sitting around watching one girl play a new video game. Well one of the girls was laying on the carpet, and Tucker repeatedly tried to pounce on her to wrestle. They had to take him out of the room because no matter how they told him that it was not okay, he just couldn't stop himself. So we have to be very careful what we encourage with him...once we say it's okay once, he won't stop! One of the first words Tucker ever said was "truck." He actually carried around a Cabela's magazine for a few weeks with an ad for a Chevy truck. He said "duck" for a few days until we figured out that he was saying truck and actually meant it! We were so, so proud of him, and so after that, anytime he said truck, we would take him outside to play in trucks. Again, Tucker generalized this, and he thought it was okay to play in any truck at any time. This includes strangers or people who would really prefer a 4 year old stay out of their truck! Tucker has run into parking lots before, focused on a truck, totally unaware of the dangers that are in a parking lot. So this led to our "no truck" rule. Tucker can only sit in a truck when he is going somewhere. This rule has been particularly hard to enforce, and it often seems like a mean rule when Tucker is crying real tears to get into a truck....but it is so nice lately that we can be out in public and spend our time at the actual event, not in the parking lot! I think if Tucker "just" had autism (like that's not enough), the behavior therapy might be easier to enforce. But because Tucker has so many medical issues, and he has been through so much, (and will continue to go through more his whole life), Chris and I are way too lenient on him. Even when we decide on certain rules, it's very hard to convince others to back us up, as everyone feels that Tucker has been through enough. I hear quite often, "he's a miracle" and "he's such a blessing," and "but he's so cute!" Well, yes he is! But he still needs limits and rules. Because at the end of the day, Chris and I have to live with him, and we'd rather raise a child, not a little monster. Luckily we have a whole team of professionals helping us to navigate Tucker's behavior issues. Normally, they are as stumped as we are, but at least we are not alone! Please pray for us as Tucker stays home with me this week for the Thanksgiving Holidays...so far, he has cried every day for his grandparents, and they all come running;) I am trying to set some limits and keep them this week, hopefully it works.

Feeding Appointment

Mom and I took Tucker to the feeding/motility appointment yesterday at Children's Hospital in New Orleans. Tucker slept the whole way there (he almost never sleeps in the car), and was a little "off" at the appointment. It was the first time I'd ever been to Children's; it seems like a nice enough place. Tucker weighed 15.8 kilograms and was 39 inches tall, this put him in the 22nd percentile for weight and 2nd percentile for height. This cracks me up because he seems so tall and skinny to me, I have to buy him long enough pants and then get them altered to be skinny enough. But according to the growth chart, he is a little chunky. I'd hate to see if he lost any weight, though. So the good thing about this is that he is growing, both height and weight wise. The feeding team includes a GI doctor, psychologist, and an OT. Two students also sat in on the meeting. The whole appointment took about an hour. I went over Tucker's entire medical history....at the end, the psychologist said, "well, it's no wonder that he doesn't eat." They watched him eat a little. He doesn't mind touching or playing with food (many kids get sick from the sight or smell of food), so he rubbed the cheetos crumbs and spaghettios around the plate, and ate a little of each. He also took a few sips of water. The team thought that Tucker actually had more potential than I had explained. They agree with his OT (Tucker had gone to OT Monday afternoon and we discussed his feeding) that Tucker wants to eat but several things are stopping him. His sensory issues are stopping the development of his oral motor skills. They agree with his OT that his food isn't even getting to his esophagus, so esophageal motility is not likely the problem. The doctor actually thinks Tucker doesn't have any motility issues, which was surprising to hear. Many kids with mito have motility issues, and lately Tucker has had constipation and diarrhea so much; the doctor said that didn't sound like motility issues, just sickness. He also looked at Tucker's belly and said that he isn't distended. Hopefully Tucker wasn't just having a skinny tummy day, and this doctor is right about his having no issues. The team all kind of looked at each other, then the OT suggested that Tucker start a medicine to help with his sensory issues. Tucker has been in sensory therapy for 2 years, and I had never heard of medicine to help those issues. The other members of the team nodded their heads in agreement, and the doctor wrote a prescription for Gabapentin, (neurontin), which is a medicine for seizure and pain management. It helps to stabilize membranes, which also helps with sensory issues. It will help to desensitize Tucker's mouth and tongue so that the food is not so hard for him to eat. As I took this information in, I asked if this drug would help all of Tucker's sensory issues. The doctor said it would, and that this medicine would likely help Tucker to improve in many areas. He said that Tucker might have pain every day, and he just can't tell us about it. Giving him this medicine could give him his first experience at a pain-free day, which would make his life better all around. I did not like that idea! To think that my son has been in any kind of chronic pain without us knowing is very discomforting. Tucker pulls his hair and grinds his teeth all the time. He looks like a pretty stressed out kid. Sometimes when he is just "off" with his behavior I will give him Advil or Tylenol and he becomes much happier. This only happens occasionally, but we always wonder if there is more going on with Tucker than what we can see. And of course he doesn't tell us anything. So, if he does have any chronic pain, this medicine should help. The doctor gave us a medical study that he co-authored. It was about using a pain management approach to getting nonverbal tube-fed kids transitioned onto oral feeding. It is a very interesting study. They began with 9 nonverbal toddlers, who had various medical complications that led them to be fed 100% by g-tube. These kids also had obvious stomach pain and issues, such as retching, which Tucker doesn't do. So the kids all got two things-one, they were put on the gabapentin, and two, they switched to a g/j tube so that for 8 weeks they got their formula straight into their intestines to give their tummies a break. Tucker is not getting that part. So at whatever point the kids each started eating better by mouth, the doctors added the megace in (medicine to increase appetite-Tucker was on this for many months with no real progress). After 8 weeks, 8 of the 9 kids were eating 100% by mouth. Months later, this was still working. The last kid was eating 50% by tube and 50% by mouth. The kids were weaned off of the megace at some point, not sure when. The GI doc said that the approach we tried two summers ago (giving Tucker megace to increase his appetite, then basically starving him out) is the second step in this protocol, not the first-that's why it didn't work. Tucker has to have weeks of positive eating experiences to unlearn all of the negative associations he has with food. They expect that once he has a more positive view of food, working with OT and speech once a week (plus the school lunch and snacks each day) will help his oral motor skill level improve. We have a follow up appointment in two months, and by then they just expect him to be trying food three times a day; they want him to take 5-6 real bites at each feeding. Their goal is not volume, just a change in his skill level and comfort. That's fine with us, just seeing a change like that would be great. As we left the office, Mom tried to gauge my reaction. I said the appointment could have been the best news we got in a very long time....IF it works. I am very skeptical of any good news, or any new medicine that is supposed to fix Tucker's issues. I am happy to try anything to help him, but I guess I just don't want to get my hopes up. After actually reading the study last night, I feel much more excited about the new medicine and how it could help Tucker. I will be filling his prescription tomorrow, and starting the med 3 times a day on Saturday. There should be no side effects, but I still want to wait for a non-school day to start the new medicine so I can watch Tucker carefully all day. I would love for him to be able to enjoy food. Having him eat even 50% of his food by mouth just seems unreal to me, but we will see:) It is so funny because Tucker's doctor in Houston is actually the doctor who suggested we see this feeding team. Tucker's therapists in Baton Rouge didn't even know that Children's had re-opened their feeding clinc after Katrina. (Apparently, they re-opened 2 years ago, but I had never heard of them...and believe me, I have asked around!) So we had to go to Houston to get referred back to New Orleans, and hopefully we are finally headed in a good direction.