Christmas

We had a wonderful Christmas Eve, but ended up at the After Hours Clinic on Christmas Day. I had a sore throat on Wednesday, so I went to my doctor on Thursday. My strep test was positive, so I got a shot of bicillin in my hip. All I can say is "ouch!!", that was painful, at least I waited until I got in my car to cry like a baby. I knew I was contagious for another day, so I tried to keep away from Chris and Tucker. I was not really feeling that sick, I had just went in as a precaution. I still had shopping to do for our trip, Christmas, and my new job that I will start the day after we get back from our trip. Thursday evening Chris, Tucker, and I went to the local park to see it all decorated for Christmas. Dylan, Gina, Molli, and Dad joined us. Tucker was not impressed, even though he loves the lit-up Christmas tree at home. Molli's favorite part was the big water fountain, she kept asking my Dad for quarters to throw in it. Right when we were leaving, Tucker chased after Chris and missed the concrete step. His face slammed into the pavement and blood poured everywhere. He ended up with an odd-shaped scab right above his lip, so for Christmas Eve he looked like he had a red Hitler mustache (he still does, actually). I put him in the cutest little black suit that his friend Josh handed down to him, but the rough-and-tumble Tucker just didn't seem to match the suit, haha! For Christmas Eve we went to Chris's parents' house for the Townsend party. We had a blast opening presents with them; Tucker got several that he loved, like a Mickey Choo Choo (that's what he called it, so cute!) and a garbage truck and two firetrucks. By then he was done opening presents, but he had about 6 more! He was not happy that each truck was stuck in its own box, wrapped with wire and tape...he brought them all to Pops to open so he could play with them. Brycen and Slade also got tons of gifts and we all thought the presents were done. Then Mrs. Mia brought out a box, and we all knew there was a gun in it for Mr. Ricky (the men are all obsessed with hunting and guns). So after Mr. Ricky opened it, they said that Cabela's only had 2 of those guns in stock, so the guys had to pull straws to see who got the other one. We all thought this was pretty dumb, but the adults weren't supposed to get presents anyways, so we said whatever. So the guys pulled numbers, and whoever had the number 1 was supposed to win. It turns out, they all had the number 1, so then Mrs. Mia brought out 4 guns, one each for Chris, Justin, Andrew, and Michael. They were like little kids on Christmas morning, it was hilarious. Tucker went to the toy closet and pulled out all of his older trucks, then he sat in the middle of all of the new and old trucks and played; he was so happy! After that party, we went home to rest. We planned to go to my parents that evening for dinner and fireworks, along with a get-together with the Christian family. After Tucker took a good nap, we went to my parents' house, where Chris C was frying turkeys. Tucker was so scared of the turkey fryer, he kept running away. Tucker had to bring his new garbage truck to Nana's, so he played with his garbage truck and his pet shop inside until he got brave enough to go back outside with the men and the turkeys. My Chris came inside and put together his famous Deer Poppers (so yummy!); along with my Dad's gumbo, we had quite a feast. When the Christians arrived, Michael, Chris, and Tucker got right to the fireworks. Tucker loved the fireworks last year at New Year's Eve, but that was almost a year ago, and I wasn't sure how he'd feel about them now. Tucker got some of the little white snap poppers (I don't know what else to call them), the little things that you just throw on the ground and they pop. No fire involved! Anyways, he loved them, he threw each one of them on the ground and as they popped, he would laugh the deepest belly laugh, it was so cute! Then Michael lit firework after firework, and Tucker would run and hide behind our legs when they started, then peek out and laugh so hard. And once he started laughing, he couldn't stop, it was so cute. So then Michael would be done with that firework, and Tucker would run over to Michael to make sure he had another one to light. During this time Dad lit a bonfire, but Tucker was way too scared of it. Once the fireworkds were gone, he wanted to swing on the big swing, which was nowhere near the fire, and therefore freezing! We all took turns swinging with him until it just got too cold and we had to take him inside. The Christians brought Tucker more presents (of course!) but all Tucker wanted was outside. I said, "at least my child isn't greedy or materialistic, right??" He really does like all their gifts, he was just not happy at all to have to come inside. After I got my shot on Thursday, I had bet Chris that we would end up at the After Hours or the ER on Christmas Day. There was no way I could have strep and they wouldn't catch it. At about 9pm on Christmas Eve, Chris came to me and said he was starting to feel bad, and getting worse quickly. We said good night to everyone and went home. By the time we got home, Chris felt too bad to put Tucker to bed or even play Santa. I hoped that after a good night's sleep he would feel better, but that was not the case. He woke up Christmas morning feeling worse than ever. Tucker opened his gifts from Santa, but he was a little off as well. I fed Tucker and gave him his usual meds, along with Ibuprofen and cold meds, and he perked up. Chris did not, so we all headed to the After Hours Clinic. I told Tucker that once we take a test to show he's not sick, we were going to Maw Maw's and Paw Paw's in Reserve (my dad's parents). He was very excited and said "Paw Paw" and "Maw Maw" the whole ride there. We had a short wait, and then they checked both Chris and Tucker for strep and the flu. They both had strep, but at least they didn't have the flu. Chris's temperature was 102. Chris got two shots of bicillin, and Tucker got one. Tucker watched with great interest as the nurse gave his Daddy two shots, but he was not at all happy when she came in with a needle for him. We decided that Tucker and I were not going to the Galatas party, because we didn't want anyone to get sick, and we didn't want to push Tucker's little body too hard before our Disney trip. Of course, Tucker was not at all happy with this decision, as he did not realize he was even sick. We spent the rest of the morning and all afternoon at home; by 5pm Chris did not feel one bit better, and Tucker was literally bored to tears. Tucker and I headed over to Mom's to get Tucker's gifts from my parents, as well as the gifts from the Galatas family. Tucker opened a portable DVD player and a big truck that holds lots of little trucks from my parents, and then about 4 more trucks from the Galatas family. All in all, I think Tucker got about 12 new trucks in 2 days! And he already has two shelves full of trucks at home that he loves, and is not ready to part with. I got caught up on what everyone got for Christmas and how everyone was feeling (so far we haven't spread our germs to anyone, yay), and then Tucker and I went home to start packing and go to sleep. Christmas was not what we planned, but Christmas Eve was so wonderful that it almost makes up for it. Today Chris started feeling better, but not by much. My antibiotic shot worked pretty quickly, but Chris's is taking much longer. His fever went down by last night at least, but he still has a lot more pain than I did. Tucker and I both still have a cold, like we have for several weeks now. I went out and stocked up on cold meds for our trip, and as of 1030 Sunday night, we are 99% packed for our trip to Orlando! Now we are focused on Orlando, we leave tomorrow at 8 am. Neither Chris nor I have ever been to Disney World; Chris hasn't ever been in an airplane....We are staying at Give Kids the World, a village built for Wish families....this place seems so great that I don't think Tucker will want to leave to go to the parks! I just can't imagine what the next week has in store for our family, but I know it is going to be magical and we are going to take pictures of all of it to share with you guys!

Don we Now Our Gay Apparel...Falalalalalalalala

The annual Lavigne Christmas party was last Saturday. This is my mom's side of the family, and it's always a fun time:) There are 5 girl cousins plus Tucker, so there are lots of Barbie toys and other girly stuff, and Tucker's all-boy attitude right in the mix. Pretty much every year Tucker and Molli like each other's gifts, and Tucker really liked her Barbie car. This year we decided to do a "Tacky Sweater" contest, but it was not really cold, so most people ended up with tacky t-shirts. I couldn't find anything that I really liked, so I made Tucker's. Chris had an idea for his, too, so I made that one as well. I don't have a pic, but it was basically sponge-painted Christmas trees with glued-on jingle bells....seriously.

So here is Tucker's shirt, can't you tell he was thrilled to wear it?? It was tacky on several levels.

My brother Dylan and his girlfriend Laci definitely won, though, check out this tacky duo.

There was tons of good food, and the kids had a lot of fun. We had Grace's 8th birthday party first. Her birthday is December 20th, and it's hard to separate Christmas festivities from her birthday (Christmas birthdays always get the shaft, it seems). She had her own cupcakes and we sang to her. Tucker skipped that part, I don't know if he was scared of the noise or what. Last year I thought that he was scared of all birthday parties, until we had his and he loved the singing then. So who knows?

The kids are the main focus, of course, and they each get 3 gifts-one from their godparents, one from Maw Maw and Paw Paw, and one from whomever picked their name. That gives them each some nice gifts, but not an overload of stuff. They are all very good about waiting their turn to open gifts, except Tucker of course! He got to open his gift first, he got a Dog Pillow Pet. He laid on top of it immediately, and he loves it:) Then he took it to the back bedroom, I guess he thought he was done. When his turn came up again, Chris had to go get him from the back. He got a Buzz Lightyear Tent from Molli, and his Nanny Meagan gave him some tools and some money for his Disney trip. At the party, his favorite was his Pillow Pet. When we got home, Chris put together the tent and Tucker LOVES it. He spends a lot of time in it, and he has invited Chris and Brad in there (they don't really fit) but he definitely has a No Mom Allowed policy. (He tells me "get out" and pushes me.)

The highlight of the party was when Molli opened her gift from my Mom and Uncle John (her godparents). It was basically Barbie palooza, but the funny part was that she was thrilled before she even knew what it was. She ripped the first piece of paper and said, "Wow, I wanted this forever! It's a truck!" when really it was a Barbie car with 2 Barbies, and tons of clothes. Her mom made her say thank you to both her godparents, but she still thinks Dylan gave her every present:) (He played Santa and passed out all the gifts.)

Here is a picture of most of the group. We are missing a few people.

After all the gifts were open, Grace and Addi sang some songs for us. Morgan introduced their act, and posed for a picture.

Tucker was pretty well-behaved for this party. Hopefully he enjoys the rest of the parties we attend. This year he definitely knew what the point of the presents was, and he enjoyed unwrapping them. It's a good thing, because he has many left to open.

I hope to update on each of the parties, this Christmas season has been a blessing for us since Tucker is healthy and happy; I want to record the good memories.

Glimpses of Tucker

It is very hard to figure out what Tucker knows, what he is thinking, what he wants, or even how he is feeling a lot of the time. He has autism, is very speech delayed, and is quite the puzzle, so most of the time with him is a guessing game. If he cries out in the middle of the night, I don't know if he is hurt, having a nightmare, or whatever else could be going on with him. The other day Chris and I found him crying his eyes out on the floor saying "Ow, Ow, Ow" and we still have not figured out what was actually hurting him. In a lot of ways, he is like a baby-figuring out his grunts and cries, and interpreting them as happy or sad, never really sure if you got it right. We try to give Tucker many experiences, we like to watch his face as he sees new things or people. The way he feels could be evident by a smile or tears, but a lot of the time we get the "Tucker glance," which is staring off into space or even tilting his head to think about things. Oh, what I would give to know what he is thinking at those times!! Tucker's speech has been steadily improving, and every so often, I get a glimpse into my sweet boy's mind. A lot of the time, I wonder if he even notices the things we do, or treats and things like that; he does, he just chooses to show me what he knows on his own terms. Yesterday, Tucker came home early from school because he had diarrhea.....I was a little upset as he generally takes days to get rid of this particular symptom. So far, it's been okay, though, and we are hoping to be good and healthy for Christmas and the Dreams Come True trip on Monday. So anyways, Tucker was home early, and we picked up Gina and her friend Jenee at school. I drove to the bank, and along the way we passed Wal Mart. Tucker pointed and called out "Go to stoy (store), Buy some eggs!" Tucker watches things like a little hawk, and keeps it all stored up in his head. We laughed so hard at him, and told him we were not going to the store. He was pretty mad! Tucker also has started to "control" the car radio. Tucker and I spend a lot of time in the car, on the way to various appointments, and the conversation is obviously one-sided. I hate to just play the music and ignore him, but I think he really prefers that, haha. Well lately he has several phrases "shage da shannel" (change the channel) "put it lodder" (put it louder) and "music" which could mean either to change the channel or to put it louder...the meaning changes with his mood! He definitely prefers rap music, but he is even picky about what type of rap music. He seems to love Boom Boom Pow, and of course Chamillionare. It is a very nice change to have him interacting with me in the car. I am very late with my Christmas shopping and wrapping this year. Well yesterday I wrapped a few small gifts, and Tucker was very interested in helping. I let him put the labels on, then I put the roll of wrapping paper in the back room. Tucker ran in there and closed the door (never a good sign) and a few minutes later we heard him talking. He had unrolled the rest of the paper and was talking through the empty roll like a megaphone. It was so cute! I asked him "what do you think you're doing??" He looked at us and said, "wappin' pesents". Seriously, Chris and I were very surprised. Usually when you ask him "who is it?" he answers "who is it?" If you ask him "what are you doing" he answers "what u doin' " So to get an actual answer was a huge deal. I told him he was not wrapping presents, he was making a mess! He just grinned:) Every once in awhile Tucker shows us a little more of his personality and thoughts, I hope he becomes more and more expressive. I would really like to get to know my little guy better:)

The Lameness of Parenthood

The new Toyota commercials say "Just Because you're a parent, it doesn't mean you have to be lame." Well, I beg to differ. ;) I thought I was the only one who found that commercial odd, then one of my best friends posted the quote on her facebook page, saying that basically parenting is what makes us lame! Haha, I have to agree. I must admit, I was lame long before Tucker was born. But I have gotten much worse as Tucker has gotten older. On Thanksgiving night, Tucker went to hit Molli, and I called to him from across the room: "Tucker, we have hugging hands, not hitting hands," and he stopped immediately. Gina and her friend Jenee busted out laughing and told me I had hit a new level of nerd. But it worked! So who cares, right? I told the girls that Tucker's teacher made up the phrase, not me, so therefore I was still a little bit cool. I have said, "Use your words," "Tucker is a big boy and he can wait," and various phrases that I never thought I would use. Even without the special needs component, parenting changes a person fundamentally. Sleep has become a precious commodity. When we have a babysitter, we have traded late nights with our friends for early dinners then a full night's sleep. (We do still occasionally have late nights, but it takes much longer to recover, haha.) I discuss my child's bodily functions in public, and over meals. When my son gets very upset, I have resorted to singing, no matter where we are. I assume people would rather hear me singing "What's gonna work? Teamwork?" or "Hot Dog Hot Diggety Dog" as opposed to my son crying, but I could be wrong about that. I have gotten up early on the day that tickets go on sale to get online, hoping to be lucky enough to get front-row seats....then being way too excited when we get aisle seats on the 4th row....not for Jason Aldean or Keith Urban (my favorites), but for Elmo Live! There was a time when I had frequent buyer Rewards cards at Best Buy and Barnes and Nobles, now I have cards for Toys R Us, Whole Foods, and CVS. I still have the old cards, but the CVS card gets much more use. I have learned that my son functions much better within rules, routines, and limits. It is not fun to give him these limits and make him follow the rules....but it is my job. If that makes me lame, so be it. I have been called worse;)

The Good, the Fun, and the Ugly

Tucker has had a few busy days. We went with his class to the Christmas Tree Farm on Friday. I think the long bus ride there and back was the highlight of the trip for Tucker. He likes Christmas trees once they are inside with lights on them, but he was not too impressed by the real trees outside. He did try to steal the saw from Addi's Dad, our appointed tree cutter. After the tree was loaded into the bus, we took a hayride around the farm. Tucker tried to escape a few times, but Mrs. Wanda made him sit still. We were happy to see two friends. Sonny was in Tucker's class last year, and his class was also at the farm. So I got to see him and talk to him mom, and get updates on all the therapies and progress our boys have made. We also saw Mrs. Charity, one of the private duty nurses that used to spend 10 hours a day at our house, back when Tucker was 1-2 years old and still had the ventilator and trach. Mrs. Charity was there with one of her sons, and we hadn't seen her in about a year. She was so surprised by how big Tucker had gotten, but she was not happy that he still isn't eating! She worked hard to get him to eat several years ago, she had hoped he was getting better with that. After the farm, we all headed to Mc Donald's. For most kids, this was the fun part. For Tucker, it was less fun. He got his burger, complete with the Sesame Seed bun from my burger (he likes the way they feel). This picture really sums up his enthusiasm! He escaped from the table a few times, too (this is becoming way too common with him), but he made it through lunch.

We attended the Dreams Come True Christmas Party on Saturday. This is the organization that granted Tucker his Dream, which is a 7 day trip to Orlando that Chris, Tucker, and I will take after Christmas. The party had a lot of activities, like face painting, balloon animals, and caroling. The noise was a little too much for Tucker, but he did like the little firetruck that sang fire safety songs. He also really liked the dramatic dancing that a church group performed. They danced to different Christmas songs and spiritual songs, and Tucker was upfront grinning! I just never know what he will like and what he won't like, because I was not expecting him to like that really. Tucker lasted for about an hour and a half (the party was 3 hours), with many many breaks to look at trucks. There was a window to the parking lot, and Tucker's favorite part of the party was looking at all of the big trucks through the window. We were very happy to see our cousin Gracie with her family at the party. Gracie was diagnosed with sarcoma, a very rare type of cancer, in July. She has had treatment at St. Jude's that seemed to work but didn't, and she has to go back once they figure out which type of treatment will work (right now her cancer is a mystery). She has an amazing positive attitude, and it was nice to see her with her sisters and her parents. Her Dream Come True is to swim with the dolphins, so hopefully she will get her dream soon. I realized that I forgot Tucker's feeding supplies (Mother of the Year, right??), so we had to leave so Tucker could eat. He threw a big fit, because he thought he was finally getting to go play with the trucks in the parking lot, but we were actually going to our car. He screamed the whole 45 minute ride home, and continued at home. Feeding him made him feel better for a few minutes, but I think by then he was too far gone. He tantrummed (if that's a word) for about 4 hours, stopping for a few minutes in between until he found something else to yell about. Nothing worked to calm him, and he refused to take a nap, which of course would have helped. A fellow mito mom said about her son: "this is what autism looks like at naptime." Good way to put it. Chris came home from hunting around 130, and Tucker didn't miss a beat with the screaming. Jackie invited us to ride on a firetruck in a Christmas parade, and Chris said he was going to call Jackie to come pick up Tucker, and they could both go without us;) Tucker finally got it together when it was time to leave in Chris's truck. I told him he had to settle down, or no truck. So he pulled it together, and we left. He had a lot of fun riding in the firetruck. He was so excited to see the firetruck in the parking lot, and he climbed right up! He did not like when it stopped, of course! He said, "ride da fiyatruck." He threw a few beads and pieces of candy, but they only made it a few inches. He didn't mind our firetruck's sirens, because we really couldn't hear them. But the firetruck behind us was much louder, and Tucker jumped everytime that siren went off. His favorite part was at the end of the parade, when the truck went a little faster to get back to the parking lot. Tucker loved the wind in his face and the uninterrupted ride. It was a very nice ending to a bad day. We just never know what to expect with him, and are pleasantly surprised when experiences like that turn out so well.

Fun with Friends and Family

I was hoping to post a Wordless Wednesday post yesterday with our fully decorated Christmas tree....well that didn't happen! Our tree is up, but the lights aren't on it, and neither are the ornaments. We got a fake tree from Maw Maw Mimi. Chris put it up on Monday, and I fluffed out the branches yesterday. Chris put it right near an outlet, which we thought made perfect sense. Well, Tucker was way into plugging and unplugging the lights, which is a definite no-no. We kept being firm with him, to no avail. So we decided to move the tree...well, two moves later (for different reasons), along with other furniture being moved, and we were done! The tree is now close enough to an outlet that the lights can reach, but the outlet is behind the TV, so Tucker would have to work extra hard to get to it! Hopefully having it out of the way will put the idea out of Tucker's mind. Maybe we will decorate it tonight:) Tucker and the whole family have been having lots of fun lately. This is a picture of Tucker riding the pig on the carousel. It's from the same day that we saw Santa. He was SO happy to ride the pig, haha! On Thanksgiving night, Molli spent the night at our house. This was Tucker's first sleepover, and the kids had a blast:) I didn't know how Tucker would like sharing his toys for a whole day (his playdates usually last just a few hours), but he just loved having Molli at his house. Molli is actually my first cousin, but she is about 10 months younger than Tucker. Her mom (Susan) and Gina hit the Black Friday sales, while we slept in and enjoyed the kids. Molli and Tucker just played and played; Molli took out toys that Tucker hadn't played with in months, and Tucker loved doing anything Molli was doing. I stayed with them in the toy room, because Molli was scared of Chris! I couldn't believe that, but she told me that Chris was not too nice. He is not sure what he ever did to make her scared, but she was. I wanted to make Molli feel comfortable so that she would enjoy herself and want to come back. I got out some princess Barbies and some old crowns I had from when I was little, and she loved all of that. Tucker usually sticks to his routine of toys (depending on which ones are his favorite at the time), but Molli wanted to try every toy he had. At one point, she asked to paint. I was hesitant at first, but it rained all day, and the kids were running out of stuff to do. So I got out some paint and old tshirts for them to wear, and they had so much fun. They also had lots of snacktimes. Tucker sat right next to Molli each time and licked his food.

It was actually much easier to have Molli over to play with Tucker than to just have him all by himself. Apparently, she is great entertainment:) Once Molli was comfortable enough for me to leave her, she and Tucker hung out in the toy room together. She kept calling me to the back. She would call out "Leigh, Leigh, Leigh" until I would go see her, then she'd say "I like this horse," or "Tucker is playing with his blocks." She just liked keeping me informed. Once she called me back "Leigh, I just made a big fluff," (her code name for passing gas) haha! After she left, the house was much too quiet and Tucker was back to being bored! Chris and I agreed that we have to invite Molli over more often, maybe she will even get to the point where she likes Chris, hopefully!

My best friend from childhood, Jessica, got engaged a few weeks ago. Her boyfriend rented out an ice skating rink, and he painted a backdrop to look like New York City; he even put up a little Christmas tree so it would look like Rockefeller Center (she loves NYC, but she visited in the summer and didn't get to ice skate). So he took her ice skating and proposed, and of course she accepted:) So on Saturday Mom and I went with Jessica and her parents and sister, along with some friends, to search for her wedding gown. It was a great day, we really had fun, and we all shed a few tears. My mom was hilarious and very informative; she discussed the good and bad points of each gown, and we all told her that her true calling is to be a wedding consultant.

Sarah and Brad had offered to spend that day with Tucker; Tucker loves them (even before he could talk, he used to carry around pictures of Brad and point to him). Brad took Tucker riding on the Rhino and the lawnmower. They also took him for a ride in the truck to McDonald's to get a hamburger, which he licked. After that day, Brad, Sarah, and Tucker all needed a nap!

That same day, Chris shot a deer. He loves to hunt, but he hadn't seen any deer so far this season. He doesn't get to go hunting very often, as he spends a lot of time home with us. Maybe soon Tucker will be able to go with Chris to the camp, but I don't think I'm ready for that!

Tomorrow Tucker's class is going to the Christmas Tree Farm for their field trip. On Saturday he has the Dreams Come True Christmas party, complete with Santa. On Saturday night we are riding in a firetruck in a parade. Jackie's brother and dad are in the fire department, so they asked Tucker to ride on Saturday. We hope that he loves it, I hope to post pictures of all of these adventures soon. Please pray that Tucker has enough energy to keep having good days, and that we have enough rest times to keep up his good behavior.

On a Roll

Tucker has had several positive appointments, yay!! I have been hesitant to post about them, and my big plan that he won't miss anymore school before the Christmas holidays; I don't want to jinx him! We went to the dentist on Tuesday. This dentist is very good with special needs kids, so we drive out to BR to see him, at the same hospital where Tucker spent the first 8 1/2 months in the NICU. This is not my favorite place, but this dentist is great, so it's worth it. Every other time, they have put him in a little room, but this time there were procedures going on and he ended up in the big, multi patient area. This was not good, as Tucker needs a confined space. He tried to run around for awhile unti I gave him some very firm words and warnings. The dentist has a big covered wagon in the waiting room, so I promised him that he could play in it once the dentist was done. He was very well-behaved for the teeth cleaning and the fluoride treatment. As soon as that was done, he jumped up and said "wagon, wagon," which led to another round of warnings until the dentist checked him out. The dentist said he looks really good; his constant teeth grinding is taking its toll, but he has baby teeth, and the damage isn't too bad. Tucker was very patient while I paid our bill (there was a problem with the receipt printer, so it took a while) and then he was very happy to play on the wagon. I actually had to drag him out of there after; I told him he was making me feel pretty bad, when he would rather hang out in the dentist's office than go home with his mom! Yesterday Tucker spent the whole day at school, then he and I played outside for over an hour once he got off of the bus. He had a blast playing with Buck (our big dog), running around the yard. I was so cold, but Tucker didn't even seem to notice. We went inside, and I fed him. He fell asleep and slept for two hours. We went to see Dr. Thomas today (the lung doctor who has followed Tucker since he was 2 months old). It was a routine follow-up, we were seeing Dr T every 4 months, but now they have moved it out to every 6 months (yay!). Dr T said he looks good, he is really past the lung issues; he will continue to see Dr T for sleep and behavior issues. He was okay with us giving Tucker the melatonin, but he would like to try weaning him off in about 6 months. He asked me how Tucker's behavior has been; he asked me straight out if I can control Tucker. I told him Tucker's behavior was pretty hard to take last week, but once he got back into his routine at school he has been much better. One kind of big change is that Dr T told us to stop the twice daily Albuterol neb treatments. Tucker has had these treatments since he came home from the NICU, they are ingrained into his routine. He wakes up asking for two things: "teetment" and "ride da bus." At night, if Chris and I forget the second treatment, Tucker reminds us! Tucker's other doctors have been asking why Tucker still has so many lung meds if his lungs are better? I figured it was to be on the safe side, so I guess today Dr T decided he longer needs that. He will still have one puff of the Flovent inhaler each night before bed. He will still have the Albuterol prescription for us to use as needed. I have a feeling that Tucker will "need" his treatment as least once a day for a while. Someone suggested I just put water into his nebulizer; I may try that! They also weighed Tucker and measured him. He seems to have gained 2 pounds in 3 weeks. People have been commenting that he looks and feels bigger. I definitely can't carry him for more than a few minutes any more. The nurse tech asked, "what has he been eating? Or, maybe I should ask, what is he NOT eating?" I had to laugh at that, I told her he would love to not eat anything. He is 39 1/4 inches tall. Chris is very concerned with Tucker's height because he wants him to be tall enough for the big rides at Disney! The big roller coasters require a height of 44 inches, so I think Chris will just have to give that up, unless Tucker has some insane growth spurt this month. There are plenty of other rides Tucker is tall enough for, but we all know he is a thrill-seeker. I hope the other rides are good enough for him. Today I picked Tucker up from school before naptime so that I wouldn't have to interrupt the whole class's nap; so this left us with an hour of free time before his appointment. Sarah and I took Tucker to see Santa at the mall. Tucker doesn't show any big interest in Santa. I have a tacky dancing Santa that I put out each year (my Paw Paw Charles gave it to me, and I don't have the heart to get rid of it!). We took it out Tuesday night and Tucker loves it. But as for the real, in-person Santa...he is not too excited. He was very excited to go to the mall, though, since the carousel is there. I told him that he had to see Santa before he could ride the carousel. He waited very patiently while a group of giggling teenagers took their picture with Santa. I told Tucker to ask Santa for a firetruck and a dump truck (because that's what he's getting, lol), but he didn't say a single word to Santa. Santa didn't seem to mind, and we got a good picture of them when Sarah said, "want to ride the horse?" Tucker's face lit up, and he said "ride da tey-gah" and "ride da horse." Here is his picture:

He is so adorable:) Once we got the picture he grabbed both of our hands and we went to the elevator. Tucker was the only kid riding the carousel, and we let him ride twice (as usual). He was very good when it was time to get off (a huge improvement in behavior from last week!). He was fine until I told him we were going to the doctor's office. Then he started crying and screaming, but I really couldn't blame him. He cried the whole way there, but then he was very happy and well-behaved at Dr T's office. Of course it helped that we had his PreK video from last year's class on the laptop, he loves watching videos of himself. Hopefully the good streak continues; Tucker has an appointment with the Endocrinologist (blood sugar doctor) right before Christmas, but until then we are hoping for his normal school routine.

Wordless Wednesday

Tucker's morning meds

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.

Feeding/Motility Clinic Tomorrow

Tucker has his first appointment at the Motility and Feeding Clinic tomorrow in New Orleans. Motility is the movement of food from the mouth, on down to the colon and out. Tucker has dysmotility, meaning that his digestive tract doesn't move food the way that it should. We don't really know the extent of this or how it affects him, so we will see if the doctors order tests tomorrow. One big issue we think he may have is esophageal dysmotility, meaning that his esophagus doesn't really push the food down. His OT thinks his problems starts before that maybe, she even mentioned it being some type of nerve problem that affects his tongue and other oral muscles. For those who don't know our history, Tucker has been in lots of feeding therapy pretty much since birth. I think I fed him a total of 2 bottles in his life?? Not really sure of the number...one experience was very positive, during the time he got off the ventilator when he was about 2 months old. Preemies have big problems learning how to eat at first, but Tucker was an amazing eater for about a week. The nurses and therapists were so pleased with him, until about a week later when his little lungs couldn't breathe for him, and he was too tired to bottle feed (bottle feeding takes a lot of energy, and preemies have very little extra energy). He ended up back on the ventilator for years, and for about 5 months he was not allowed to eat orally due to fear of aspiration. So the second time that the doctors let Tucker try the bottle, it was pretty much a disaster. He had no interest in it, and no strength in his mouth or chin to drink. So that was a bust, but we have tried over and over through the years to feed him. We usually have a few weeks of success, only to be moved back by any health issue or due to behavior issues. We have tried starving him out (seriously), giving him appetite stimulant, numerous reinforcements, and the social interaction (i.e. "peer pressure"). Tucker has had amazing therapists working with him for years, and lately we are taking a break from feeding as we are at some type of physical roadblock. His therapists really believe that Tucker wants to eat, but that there are two problems: 1. he has had so much failure in the past that he has just given up. 2. Something is physically preventing him from swallowing his food. None of us like to be forced to do things we aren't good at....in Tucker's case, eating is not a positive experience. Tucker has a g-button, and he gets formula and blended food through this. He is 100% tube-fed. Medically speaking, having a g-button is not a big deal. There isn't an increased risk of infection; Tucker can take baths and swim, and if he pulls it out or it falls out, we can put a new one in very easily. Giving him the feedings is really a piece of cake! Many moms have pointed out to me how "easy" we have it, since we just pour his food and medicines right in, regardless of how they taste or whether or not Tucker is even awake. Socially, though, not eating is a HUGE deal! I never realized just how much of our lives revolve around food. Planning meals, grocery shopping, going out to lunch or dinner with friends or colleagues, birthday parties, weddings, holidays (especially Turkey Day coming up next week), we pretty much plan our lives around when and what we are going to eat next. Tucker could care less what his next meal is; he just knows that he has to sit still while he gets it. He is really hilarious, he even hooks the extenstion tubing up to his button and helps me put his meds in. When you ask him where his belly button is, he points to his g-button. We make jokes about Tucker's feeding issues. Chris says that food is Tucker's cryptonite. Everyone in our family knows when they open a bag of snacks for Tucker, they have to give him a napkin to discard the well-licked snacks....because they aren't going down his throat. They also know to check any opened food, because there is a chance that Tucker has licked food and put it back in! One of Tucker's favorite activities is to lick all of the flavor off of something, then force feed it to someone else. It's disgusting, but also really funny. Missy once joked that Tucker and Samuel would be able to drink their friends under the table by pouring the beer directly into their feeding tubes! :) We joke about everything, but at every meal (especially meals with other people) we realize what an odd situation we are in. Tucker usually doesn't sit down at mealtimes because he would much rather play or watch tv. He behaves well at restaurants and in the cafeteria at school, but it takes a lot of redirection and reminders. When our families get together (which is at least twice a week) we all take turns entertaining Tucker since he does not enjoy sitting with us. Our families (especially the Galatas side!) love to eat, and when we get together, about 80% of the time is spent at the table. Chris and I have talked about Tucker's feeding, and we have changed our goals in this area. We would like Tucker to sit with the family at mealtimes, sit with kids to eat cake and ice cream at birthday parties, and participate in food-centered activities even if he doesn't really eat the food. He doesn't need to actually eat anything, just want to be a part of the experience. We just don't see a point in Tucker's life when he wouldn't have his g-button. That is just not realistic. This is a definite change in our thinking; as recently as July of this year we were looking forward to the day when Tucker would just eat with his mouth. It's partly because it's a battle we are all tired of fighting. It also has a lot to do with Tucker's mito diagnosis. Mito kids need adequate nutrition to get to their cells, and the g-button is a great way to guarantee that Tucker gets an adequate amount and type of foods. Tucker also has to take a good bit of medicine and supplements, and it is just easier to put them in his button than to make any kid take all of that by mouth. We made the choice a few months ago to put Tucker's oral feedings to the back of the priority list. Tomorrow we move it right back up to top where it has been for year. Hopefully we will get some new information to help us form our new plan for Tucker.

Mid November recap

I am glad to report that for the moment, we have Tucker's blood sugar under control! I was so frustrated and upset for awhile, having no idea what's going on with your little guy's blood sugar and tummy/intestines is not a fun place to be! Tucker ended up having diarrhea for 11 days and it's still not really over....seriously....BUT it is only once a day instead of 4-5 times a day, so I'll take it! This diarrhea started right when we changed to Glucerna (diabetic formula), so I was pretty mad that we traded one problem for another, and that Tucker missed two days of school (including a fun field trip) for no illness. He is now at the point where he just goes once a day, and luckily he poops at home, so he attended school 4 days this week:) After one week, we finally got the paperwork sorted out with the insurance, dr, and DME, and we now have one week's worth of Diabetasource, which is another diabetic formula comparable to Glucerna, but with more calories (yay). The DME can't get Glucerna for some reason, but the dr and I read all of the nutrition info, and it seems exactly the same. Tucker certainly reacted to it the same...fantastic blood sugars, and more diarrhea. I also switched out a few of the fruits in Tucker's blended diet (I mix his food for 3 out of 5 of his daily feedings), and his blood sugars look great with that as well. The diabetes nurse and nutritionists were very impressed with the nutrition Tucker is getting, they asked me where I got his feeding plan. I told them I started with the USDA.gov food pyramid, made it gluten-free and lactose-free, and ta-daa! Tucker's blended diet. Assuming his gut actually absorbs all of the nutrition, Tucker is the best-fed 4 year old around...too bad I can't say the same for Chris and me! Having all of this figured out really took a weight off of my shoulders. I picked up the order from the dr saying that the school can feed Tucker Diabetasource, so I'll drop that off Monday with the new food. Tucker missed school on Wednesday for a trip to the Craniofacial Clinic. This was quite an experience for us last year, as this is the appointment where we learned that Tucker's skull was fused shut in 3 of 5 places, and that his brain likely wasn't really going to get too much bigger...ever.... We also learned that there was really nothing we could do about it, so I thought we wouldn't go back to the clinic. Since last year, Tucker got diagnosed with mito, and microcephaly (small head) is actually quite common for mito kids. I called the neurosurgeon's office a few months ago to schedule Tucker's annual visit, and they asked me to see him in the craniofacial clinic instead. So on Wednesday, Mrs. Mia, Mom, and I packed Tucker up and headed to New Orleans. Tucker was seen by the ENT (who switched him to Zyrtec for his allergies, and told us she would almost never consider retraching Tucker-yay!), plastic surgeon, pediatrician, speech therapist, social worker, geneticist (recommended some new supplements for Tucker), and neurosurgeon. Both the pediatric dentist and oral surgeon had seen Tucker last year and said his jaw looked great, so I guess they didn't need to see him this year. That made for a long morning! It was actually a good day because the neurosurgeon discharged us. Tucker has not lost a specialist since September 2008 when the cardiologist discharged him...and lately we have been adding specialists left and right, so saying "adios" to one of them was fine with me! Speaking of "adios," that is one of Tucker's favorite words, we should have gotten him to say it to the doctor! Tucker was extremely well-behaved for the whole day, except for one point when he found all the buttons that moved the patient chair up, down, and made the head rest move:) He just loves pressing buttons and watching what will happen. I found the whole process exhausting. The doctors all had to ask us the same questions; at one point, I asked "did you read his chart?" When a doctor walks in and asks, "So how has Tucker been since the last time we saw him?" I want to say, "Well, a lot has happened in a year, so get out your notebook." The pediatrician and speech therapist were very impressed by all of the services Tucker receives and the progress he is making. He receives everything he can at school (OT, speech, PT, and Adaptive PE), along with private OT and speech. I recapped the summer of therapies, which made me tired just talking about. After I summarized our entire year for the social worker, including 4 hopsital stays (though all minor, thank goodness!) and a ridiculous amount of doctor and therapy visits, I came to the conclusion that we all deserve a vacation! :) In case anyone forgot, we actually have a vacation coming up right after Christmas. Tucker was awarded a Dreams Come True trip to Disney World, Universal Studios, and Sea World. None of us has ever been to Orlando, and we really have no idea what to expect or any real checklist of what to see, other than Mickey Mouse and the Potato Head store (you can buy all kinds of Disney character parts for the Potato Head there) :) Tucker doesn't really like shows, but he LOVES rides and music. He also loves fireworks and parades, along with spending as much time as possible with Chris, so a trip to several theme parks will honestly be a Dream Come True for Tucker. I recently learned that the Playhouse Disney characters have a show at Hollywood Studios, it only lasts about 20 minutes, so Tucker should be able to sit through that. The Playhouse Disney characters are the ones that he loves (Mickey Mouse and all his friends, Handy Manny and the tools, Agent Oso, and the Imagination Movers); I doubt he would recognize Peter Pan, Aladdin, or any of those characters...but he generally loves anyone in a costume, so it should be a fun trip. We haven't really talked about Disney very much, I think we are waiting until it's closer to really believe that we will make it! It's really hard for anyone to believe it when their child is granted a trip like this; we always planned to take Tucker to Disney, and we are thankful that we will get to have this experience with him. Please keep us in your thoughts and prayers as Tucker sees the GI (motility specialist) next week, the dentist the next week (always fun, right?), then the pulmonologist the first week of December.

Tough Questions....Surprising Answers

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future"

Jeremiah 29:11

This post has been brewing for awhile, years maybe....this will be long and jumbled, it probably should be broken into 4 or 5 posts, but I'm just not sure how to do that! Over the years I have surrounded myself with wonderful friends, friends who are low on drama and very good with supporting me and leading good lives. The kind of people I am proud to call my friends. Along with them, I of course have my family. You can't choose your family, but if I could, I'd still pick them! I feel that over the past 4 years, it has been very easy for me to see God working in the lives of my friends and family. Especially over the last 6 months to a year, several of my close friends have gone back to church, and gotten more involved in their perspective religions. I have seen them go from impossible situations, and come out the other side beautifully....not that I ever doubted they would. There are certain situations that I have worried over and prayed for, only to have them eventually turn out way better than I could have imagined...again, more proof in my mind that God had His divine plan for each one of these people, and their steadfast faith led them to that plan. So why is it so hard for me to see His hand on my life?? Why is it that I often find myself questioning every hardship, wishing He had put me on a completely different path, thinking that surely this can not be the plan He had set for me before I was born... Before I freak anyone out, it's not like I sit around and feel this way all the time! I am generally a very happy person; I have just always felt like I could hear God's voice leading me in my life, and for months now, I don't hear it...I know that He is still talking, I am just not listening...this is just what I am struggling with right now. So, here is proof that I have started to listen...a few weeks ago I went back to church....how terrible and beautiful that it took the death of sweet Samuel (and the beautiful way his family gave him back to God) to lead me back to church...so that week in the church bulletin there was an advertisement for a small faith group. This is something I have always wanted to join. People always complain that the Catholic faith never allows opportunities to really read the Bible and discuss viewpoints, or really get to know others in our faith (NOT true, by the way, just ask my mom-lol!! she is a wealth of information on our faith). But anyways, I tried ReNew a few years ago, and I just didn't feel it, but I decided to try this. The same week, there was an advertisement for the annual Family Day (which actually hadn't happened the past two years due to construction on the church). So I made the decision to go to those two events, so we could get more involved at church. At the Family Day, I saw a few people that I used to be in youth group with; one of them sent me an invitation to the church's Young Adult ministry, which recently started at our church. Family Day was a flop otherwise; it was way too hot for Tucker to be outside, so we left soon after meeting a few people. So just from going to church a few times, I found out about two ministries that I hope to be very involved in...so that's progress. What I want to focus on for this post is that I don't expect to get my answers any time soon. Since Tucker's birth, I have asked tough questions over and over...and I often don't get the answers until years later. For many of the questions, I will not find answers on this side of heaven.... I look back at many points in Tucker's life, and I can see God leading my heart and Tucker's doctors or other people in a certain way....but I just usually don't see it at the time. There were many times, when a certain nurse would ask a question, or a new doctor would look at his file, and try something new with Tucker that would change his life...and each time I knew God sent them. The nurse who was new on Tucker's case and casually suggested we move Tucker's Valium dose from 4 am to 6pm?? Yeah, she gave us months of time with our son! Before that, he literally slept all day and his night nurse got way more out of him than I ever did. My friend Kristin suggesting to me that Tucker see a developmental pediatrician, which I had never heard of. Then months and months of me asking everyone if that even existed in Louisiana-after months of people saying no, I finally got a "yes." Then after weeks of phone tag to find her, and 5 months waiting for an appointment, this is the doctor who looked us in the eyes and said "there is something going on with your son that has nothing to do with prematurity." Which led us to genetic and metabolic testing, and eventually to Dr K in Houston....what a blessing my friend Kristin gave me with that suggestion! I really do have lists and lists of these instances, but in the hard moments, it is still tough for me to recall them. One of the main questions is always: "Why is this happening to me? to my son?" This has never been actually answered. But some of my excuses or reasons why it should NOT be us have been refuted. 1. "We are too young, too inexperienced in life, not ready at all to fight this fight." The answer came back: "your youth gives you energy, and you'll need that. You haven't lived long enough to know how else it should be...you don't have preconceived plans or too many financial strains...you can sit at the bedside of your sick baby for hours at a time...and continue to do this for almost a year...an older person with a fulltime job or other children couldn't have done that. You have many years left to fight, and so does your son. Take your cues from him...he already knows how to fight this fight...learn from him." 2. Our family had so many hopes and dreams for this child...how can we possibly sit by and watch them go unfulfilled? Not only Chris and me...I mean grandparents, greatgrandparents, more aunts and uncles than I can count....how could this happen to a family who was (and is) so ready to give this child a long, full, happy life? The answer came back: "you will dream new dreams. And you will work harder than you have ever worked to reach them. You will learn that those dreams were never meant for Tucker, I have My own special plan for him. Tucker was not sent here just for your family, but for so much more. Your family has so so much love to give...not all kids get to experience that. Most people don't understand special children, even when they are in their own family. Your family is different, and therefore will get the gift of Tucker. Parents of special needs children need more support than they can ever get, and your family will learn how to help you. Tucker will need the love and understanding of every grandparent, aunt, and uncle to be who he needs to become...that's why Tucker was given to such a big family...he needs all of you." I have read this on another mom's blog, and it really applies to me as well: I was living life to the fullest long before my child was born...I think somehow I "knew" how to pack a rich life into a short time as possible. I have always loved school, and through Chris, I learned that school came very easy to me. I always thought that I made A's because I worked hard, but really, I was very blessed. I helped Chris make it through high school (no I never wrote his papers for him, as several teacher confronted us about!), but he worked very hard to graduate. He wasn't sure what to do after high school, while I went to LSU and declared a major of Political Science right away. I participated in many activities in school, I spent my first summer in London and Paris, as well as attending Res Life conferences in Oklahoma and North Carolina my freshman year. I graduated in 3 years, in a hurry to get somewhere, lol, not really sure where! Chris took longer to decide, but then found HVAC technical school and did very well. Chris finished school six months after I did, but got a full-time, "real" paying job way before me...in fact, I still don't have one:) "Our" plan was never ever for him to be the only breadwinner, but his skills and practical knowledge have put him in that position while I have taken care of Tucker. While he worked, I sat at Tucker's bedside and waited for him to come home. I dealt with DMEs and home nursing, and coordinated many, many appointments. After Tucker was a year old, things settled down (well, in our terms) and I started graduate school. This is another part of my life that I really saw God's hand at work. Of course we would have never asked for such a sick child...but because Tucker was early, and so sick, we had full time nursing at home, 12 hours a day. While I knew other preemie moms who had no choice but to stay home with their little ones for the first few scary years, I had several hours a week to myself to pursue a graduate degree. Many people must have questioned this decision, or thought it was crazy. I have worked with special needs kids and adults as summer jobs through college and after college, and I had seen caregiver burn-out first hand...it was not pretty, for the caregivers or their children....I had to keep some part of "me", and nothing was more "me" than school. The following year I got a part time internship researching policy, as well as a part-time graduate research assistantship. So for that year, I worked full-time, attended school full-time, and coordinated Tucker's care. By this point, the money from my jobs really helped; having the nursing also helped Tucker, as the nurses pushed him for therapy goals harder than I ever could! I was (and still am) such a pushover mom. But by the end of my graduate program, we had no choice but for me to stay home with Tucker. I did not embrace this role; in fact, I was pretty upset! As everyone planned to interview for fulltime jobs, or get promoted at their current jobs for earning a graduate degree, I planned to become a fulltime stay-at-home (for the 2 hours a day we weren't at therapy or doctors appointments) mom. We knew that financially it would literally take an act of God for this to be a reality...and over and over He has provided extra jobs, overtime, and benefits for Tucker's care. So at this point, I began asking: "Why was I allowed the opportunity to earn a Master's Degree, in a program that I really loved, and then not be able to use it to support my family?" The answer comes back, "Tucker needs you at home right now. You have two degrees, taking some time out will not take those degrees away. So many parents have no idea what services are available to their children, what insurance companies really cover, how to deal with the school system to best provide for their children, and really understand the policies that affect their children; you understand all of this. You will still feel overwhelmed when you read an IEP, but you have the ability to process that type of information, and that is a true gift. You are not intimidated by doctors and nurses, you know to ask them tough questions and second guess every decision they make and every piece of information they give you. That is also a true gift that will help your son....you don't realize it now, but Tucker's fight is just beginning.....The time will come when you will use your degrees to support your son...he will need costly care for the rest of his life, and you will always treasure this time you spent with him, and the huge difference it made in his development. You may not even see this for years, but someday you will realize this was also part of My plan." After the first few meetings of the small faith groups, I have learned (or re-learned, I guess) quite a bit. God gave me special graces at my Baptism to help me fill out His plan for me. When I was a baby, my parents brought me to church to have me baptized; my Godparents blessed me and agreed to help my parents raise me and teach me about Jesus. Those graces are still with me today; my parents and Godparents had no idea that the baby they held was going to eventually become "Tucker's Mom," but God knew....and that means something to me. I have also re-learned that the hardest times, the times when I want to just give it all up, are when I need to ask Jesus for the strength to keep going...that is when I am figuratively on the cross myself, and my suffering could never compare to what Jesus suffered....I am to offer it all up to Him, and somehow, everytime I do that, I feel better and refreshed....able to keep going. I know that God has amazing plans for Tucker and our family....thank you all for being part of them.

Frustrated

Well I should have known when I wrote that Tucker would have a "full" day of school this week that I was jinxing him...this week was the only week that we had no planned appointments. I really wanted him to have 5 full days with his school routine before we go into several weeks of appointments and holidays. Tucker's blood sugar has been higher lately, but it has been correcting itself. Both the Endo and Mito drs were fine with monitoring it, but this week it started skyrocketing. On Tuesday evening it went up to 420 after he ate. You are not supposed to check blood sugar right after you eat because it is higher than usual, but no matter what time it's tested it should never reach 400. I called the endo afterhours, and then re-checked, by this point it was down to 380. The dr said that if his blood sugar didn't get down to 250, we'd have to go to the hospital for insulin. If it didn't get down to 150, we had to call the dr back and see what he said at that point. So we checked it every hour, and it went down by about 80 each hour. He got down to 66 after 3 hours, then back up to 98. The next morning I fed him before school and his blood sugar got up to 491. I decided to keep him home long enough to check him after 30 minutes and 60 minutes to get a good pattern for the doctor. I called the endo at 8am, then waited for them to call back. I brought Tucker to school late and explained the issue to his teacher. I also apologized in case Tucker had been acting wacky due to his high sugar. The teacher told me that he has been amazing lately, and that they are so happy to have him in the class. She even thanked me for sharing Tucker with the class:) I was so thrilled at that point...I always feel like Tucker slows the other kids down or doesn't fit in. But he really is fitting in well with the kids and working so hard to be his best...I am such a proud mommy!:) As I walked back in the door at home, the endo called. They told me to bring Tucker in at 145 and we would be changing his feeds. When I went to pick Tucker up from school, he was NOT happy. I had to drag him out of the school until he saw my car and Sarah waved to him. Then he was happy and ran to the car, thank goodness! We went to the drs office, and Sarah kept Tucker busy while I spoke to the nurse practitioner. She and I had a long talk about Tucker's issues, his sugar readings, his feeds, and his mito. They gave me more of a schedule, a prescription for ketone strips to test his urine when his blood sugar is high, and they changed his formula from Pediasure to Glucerna. I usually blend up food for Tucker and feed that to him 3 times a day at home (fruit, veggies, grains, soy milk and yogurt, meat, and fats) then he gets 2 cans of Pediasure at school. Tucker's sugars were skyrocketing equally high no matter if he got the blended food or Pediasure. The NP said that the dietician will look over the blended food and change out the simple sugars for more complex sugars, then we can re-start blended food next week. For two days (starting Wednesday), Tucker will get Glucerna formula. It has fewer calories per bottle than his blended food or Pediasure, so he has to get a lot more of it. Starting yesterday evening, he got Glucerna, and his sugars came down considerably. So I was thinking it was successful after the first feed! Of course nothing is that easy...last night after Tucker was in bed, Chris and I heard him cry out several times. We ran into his room, and he was asleep. We watched him writhe for awhile, and we thought he was having a nightmare. Chris felt his tummy, which felt kind of hard, but he was still asleep so we just left him alone. Today I had to go into Tucker's school at 930 am and feed him the Glucerna. The endo faxed over the orders to change his formula at school, but they didn't get entered into the system quite in time for 930. So I went in and fed him and told the teacher and aides about the formula change. Again, this is at 930. By 11am, I was back at home, and finally starting some housework. I actually vacummed (I know, hard to believe!) and when I was done I noticed two missed calls from Tucker's teacher. I didn't check the message, I just called her back. She said he had horrible diarrhea, and I had to pick him up from school. The school nurse said it was likely from the formula change (endo agrees) but he still had to go home just in case. So I went back to school, and took Tucker home for the second time in two days....again, he was NOT happy! Once he got home, he ran around and was acting fine, so we are thinking it is definitely a formula issue, which the doctor thinks will resolve. The diarrhea came back after his afternoon and evening feeding, I am still waiting for it after his 830pm feeding. His sugars have looked great, by the way... I am incredibly sad and frustrated right now....it seems that as soon as we get one issue figured out, or even a little bit better, something else pops up. This is the nature of mito...I should not be surprised, in fact, I should expect this. It's just different from saying that we know he'll have more issues, to actually experiencing the issues. Tucker's tummy is huge tonight, and I am worried about him. Tucker's class is going to Global Wildlife tomorrow. The kids have spent all week learning about the animals they will see, and they are so excited about it. No, Tucker doesn't come home talking about animals or anything, but I know that he realizes what is going on at school. Mrs. Amy told me that she really doesn't want him to miss the trip; neither do I! Chris and I tried to figure out how we can go, but he pointed out that we'll spend most of the day on a covered wagon feeding animals....no bathroom or changing area nearby! So I don't think we really have a choice. I am going to stop his Levo Carnitine again tomorrow to see if that helps stop the diarrhea at all, and then call the Endocrinologist's office at 8am to get a new plan if the diarrhea doesn't stop. I really don't want to "wait out" the diarrhea, but I'm not sure what other option they'll give us. Another thing that hit me today was that I realized that Tucker actually missed more school in October than he attended; I really do not want the same to be true for November. And these are supposed to be his "healthy" years, before his issues get worse. (At least, the way we understand depletion syndrome...maybe we're totally off the mark). Even with all of this, Tucker has been hilarious. Today Mrs. Joy came over for speech, and she said that she could tell he was bored! He went through the whole box of language cards and was "reading" a book when Chris and I went into the therapy room at the end of the hour. He told Chris a whole sentence "I want de teye-gah bank". He had to say it a few times before we understood what he was saying, we had never heard so many syllables come from his mouth that actually made sense. I feel much better about Tucker's blood sugar, especially now that we have the urine test strips to get more information and know if he needs immediate attention. I just hate that fixing his sugar issues has led to the tummy issues. Hopefully we'll get it all figured out tomorrow. Please keep Tucker in your prayers!

Prematurity Awareness Month

I have been a bloghog lately! I just have so much to say lately, I guess. November is Prematurity Awareness Month. I could go on and on about Prematurity and how it affects our lives every day....how it affects so many lives every year. 1 in 8 babies in America are born too soon....1 in 8!! That just astounded me when I learned that....when Chris and I talked to the NICU dr who told us our son was going to be born at 27 weeks, I thought "surely no one has babies that early," but we are no where near alone... Tucker's birth and NICU story is long and complicated...and also miraculous and a testament to the doctors and nurses, family members and friends, and our faith in God... but for now I'll just touch on some of the things that Prematurity took from us...things that still haunt me to this day....things that I will never truly "get over" as moms never "get over" the birth of their child, even decades later.... -13 weeks of pregnancy-13 weeks of doctors' appointments, crazy cravings and symptoms, watching my belly grow and knowing that my little one was safe inside...13 weeks of ultrasounds, maternity clothes, baby shopping, and people asking me "when are you due?" For those 13 weeks, no one outside of the NICU could tell I was a new mom. There were no outward signs that I had a new baby. I stayed inpatient for 5 days after Tucker's birth, and I lost the "baby" weight by the time Tucker was one week old. I enjoyed my baby shower, but by then Tucker was 8 weeks old. There was no guessing how much my baby would weigh or measuring my tummy for any games...not that I would have enjoyed that in the first place! Instead of spending a few hours in labor and a few days in the hospital with a newborn, we spent 4 days in Labor & Delivery and 5 days in the postpartum area. For those 4 days, Chris and I heard babies being delivered all around us, loud crying babies...we knew we weren't going to have that kind of delivery....After Tucker was born, they took him away immediately....we spent 5 more days listening to crying babies with their families all around us, while ours fought for his life somewhere else in the hospital. On that 5th day, we left the hospital without our son. I was wheeled out of the place empty-handed...it was like some cruel joke that I didn't get...We were supposed to be thankful that Tucker was at least alive, that he had the chance to make it and one day be okay, but it was just the most unnatural feeling to leave the hospital and go home to an empty nursery. Chris and I made that same trip over and over during the next 246 days...If we knew at the beginning how long it was going to be, I don't think we could have ever started... The doctors explained that we had at least 13 weeks of the NICU ahead of us....and each day in the NICU can feel like an eternity....that kind of information can make you numb, just make you want to crawl into bed and not come out until your old due date...but you are parents now, and that is not an option. So you watch your child fight a fight they were never supposed to...a fight that too many babies lose...and you feel powerless to touch them, talk to them, or sometimes even look at them, since your voice and the lights often are too much for their little bodies to handle. (Chris and I didn't even hold Tucker for 7 weeks, a subject that could fill up many blog posts.) You throw out the "What to Expect When You're Expecting" books and buy new books....learn new terms, like ROP, PDA, BPD, and celebrate every little success. The doctors tell you that many preemies show no signs of their early births by age 2 or 4, but many other preemies are affected for life...you hope and pray that your baby is one of the lucky ones, one of the strong ones whom no one would ever guess started life like this. Honestly, we are still adjusting to life as parents of a preemie. So many dreams and plans that we had are still being changed and moved around to fit our reality. I hope that sharing Tucker's story makes others aware of Prematurity and its affects, and that one day the statistics look much better for all babies.

Trick or Treating Pics

Tucker was Superman for Halloween this year. We tried to take a picture of him with the pumpkins at Brad's parents' house. This is the best pose he made! Notice his slicked back hair, isn't it so cute?? This year Tucker trick or treated with his cousins, Molli and Addi. Molli was a witch and Addi was an LSU fairy. Molli had a small fit, because she wanted to know why she couldn't be Superman or Purple? Haha, it's always funny when someone else's kid has a fit, and not mine! So Susan let Molli have some purple hairspray to be like her sister.

Brad and Chris rode in the Rhino/4 wheeler, and they pulled us in a trailer in the back. Tucker LOVED it!!

Gina and Jenee' were the Trick or Treating Assistants, and Sarah was the photographer. She got some great shots:) Here is one of the Trick or Treaters.

And one of my absolute favorites of Tucker and Gina...

Then one of Tucker and me. At every single house, Tucker would give back the first treat offered, and dig in the candy bucket! He had to make sure there wasn't something "better" that he should get; he's lucky he's so cute, because people tolerated this pretty well! By the time Tucker had chosen his perfect candy, the other kids were back in the trailer waiting to go...Tucker was the slowest Trick or Treater ever!

Here is a pic of Chris, Tucker, and me. Chris and I were NOT ready for pictures of us, we didn't even dress up. But I love this pic because Meagan pointed out to me that Tucker and Chris have the exact same posture in this one. Tucker really is mini-Chris, and you can see it in this picture.