Visits with the Surgeon, ENT, and Creepy Easter Bunny

Tucker had a busy week last week. He has been “off” for a while now. We say that because he has been very well-behaved, and seemingly happy most of the time. BUT-he grinds his teeth often and very loudly, so we know that something is wrong. Nothing in particular seems to bother him at the time, it’s just almost constant.

His teacher called me today because they noticed it was so bad, she said he hadn’t been grinding his teeth at school for months. I guess he hasn’t really been grinding his teeth at home either until lately, we didn’t even notice that he had stopped. Yesterday we went to Sissy and Pops’ house (Chris’s parents), which is one of his favorite places to go. He cried and cried, asking to “go home, go home”, crying real tears and asking me to rock him the whole time instead of being outside with the family. The guys were all working on Justin’s truck, which should have made Tucker so happy. The rest of the family was on the back patio with the swing, and that also should have made him so happy, but it didn’t.

He has had an ear infection for a while. The pediatrician put him on an antibiotic two weeks ago, but it hasn’t really gotten better. The problem is that his left ear tube is trying to fall out on its own, and it is just getting stuck deeper and deeper into his ear instead of falling out. The ENT said it should be painful, so maybe that is why Tucker is so off lately. We give him ibuprofen, so we may need to go up on the frequency or add Tylenol as well.

Tucker saw the surgeon last week in his office. This is the dr that performed 4 surgeries on Tucker when he was 3 months old. At the time, I think Chris and I were just in shock and didn’t realize how much Tucker was getting all at once….the trach was placed, the g-tube was placed, the nissen fundoapplication was performed, and his hernias were reduced. It took about 3-4 hours, and about 4 days to recover.

Anyways, this dr has been around for a while, but we rarely see him. Thankfully Tucker has only needed minor surgeries since he was 3 months old; we mainly see the surgeon when something is wrong with his g-button. His button has been leaking occasionally since December. Some times it seems like the entire can of formula leaks out; lately he eats real food, and he almost always has a little bit of food leaking out and sticking to his shirt. The surgeon ordered a shorter button, thinking that maybe there is too much room between the button and his tummy wall. He said if that doesn’t work, then we’ll change brands.

He thought Tucker was doing so well, he was talking a lot that day. Chris had to really hold onto Tucker in the waiting room, as there was a baby, and Tucker wanted to hold it!! I don’t even know if it was a boy or girl, it was little and in a baby stroller. I’m sure the last thing that mom wanted was Tucker’s preschool germs all over her baby, so we had to keep him on the other side of the room. Tucker is a great patient, he lifted his shirt for the nurse, the resident, and then the surgeon to view his button. At the end, he demanded a sticker, of course, so he got three. I changed his button last night, so hopefully the leaking ends soon!

I made what I’d call a rookie mistake when I changed it (Chris was cooking). Changing Tucker’s button is usually a one-person job. It’s not hard if you’re prepared, because Tucker doesn’t wiggle or try to touch his stoma or anything. We usually lay him on the floor with a few towels underneath him. Well, he hadn’t eaten in a few hours, but he did have water. I wasn’t worried about leaking, not sure why! Anyways, I laid him on the couch, pulled out his button, and water went everywhere. I had to hurry up and grab a few towels (I had none!), and then stick the new button in. Tucker thought this was all hilarious, so he was laughing hysterically, causing more water to rush out. After I popped in his new button, he got down and I cleaned the whole couch cushion and all underneath it.

On Friday we took Tucker to see the ENT. He loves her, maybe it’s because she took out his trach. I don’t know, but he woke up that morning saying “go to the doctah”, he knows which one we are going to when we tell him, he is so funny! We drove to New Orleans, listening to the Jason Aldean channel on Chris’s IPhone. Tucker was grinning the whole way. We were called in to see the dr very quickly, and then she was right in. She looked at his ears and took him to the procedure room. He laid down, and she pulled his right ear tube out easily. She looked into the left ear, but she said it had buried down deeper than last time and it looked red and inflamed. So she gave us antibiotic drops, we will use them twice a day for ten days, then go back right after Easter for her to try to pull out the tube. If she can’t do it in the office, then she will have to schedule OR time and do it with him asleep. We’d much rather just get it out in the office, so hopefully the antibiotics work. Tucker has had this set of ear tubes for almost 2 years exactly, so they need to come out. The dr said that usually by 6, kids don’t need ear tubes anymore. Of course, Tucker doesn’t follow any of the rules, so she said we’ll re-evaluate him and see if he needs more tubes a few months later.

Tucker got more stickers, he was very happy. I told him we could go see the Easter Bunny at the mall for his prize, he was not too excited. You wouldn’t be either, if you knew his history. When he was little, he loved the Easter Bunny. He loved anything in costume, and the bunny was furry, so added bonus. Then we met this Bunny at the church egg hunt in 2010.

 Pretty creepy, right!!??


I told him this bunny would be so much better, he was still not very excited. We stopped for lunch first, and it took a while to get our food. Tucker was so good, he ate his pudding and watched his Mickey Mouse video, then watched us eat our pasta but didn't want to lick any of it. I looked up the mall’s website to see if the Easter Bunny had certain hours; it was supposedly there all day, and there was also a Hoppitty Express train that kids could ride for $1.50. So Tucker was very excited, “go ride da choo choo twain!” After lunch we parked at Dillard’s and luckily that is right where the Easter set-up was. There was just one kid in front of us, so we didn’t have much time to prepare him. Chris had to pretty much force Tucker to sit with the bunny, he kept asking for the train. Tucker sat on the edge of the bench, and when the photographer told him to scoot over, he barely moved. This was our best picture.

So you don’t blame him, right? 

Anyways, after this, he rode the train twice. He had fun, but I think it was geared towards smaller kids, because he was perfectly happy to get out after two rides. I think this was our last year with the Easter Bunny, Tucker may just be too old for that.


There were about 4 stores in between the Easter display and Dillard’s; naturally one of them was Build a Bear. Tucker jumped out of his stroller and went into that store. He went straight to the camouflage bear bin, and started hugging the Camo bear, asking to “get it! Get it!” He already has the exact same one at home, and we had just paid an outrageous price for the EB picture, so he got a couple of “no”s, then put back in his stroller. He cried real tears during the trip through Dillard’s, the potty stop, and for most of the ride home.

He’s not spoiled at all, right??

He finally got over it, thankfully, and smiled a bit. He fell asleep when we were almost home, then slept for about 1.5 hours more. When he woke up, his Camo bear was waiting for him, and it didn't leave his side all weekend.


We had a long and busy weekend. My job is getting to the busy time of year, so I worked Saturday and will be working next Saturday as well. Please pray for our family as we have faced changes with Chris’s job since last October. We have been struggling with trying to decide what Chris’s next step is professionally; while I know that God has a great plan for him (he is Tucker’s and the Peanut’s dad after all), it is often hard to believe that because we don’t know what that plan is exactly. We have enough daily uncertainty with Tucker, so it is nice when Chris and I can depend on our jobs and incomes. No one likes it when work becomes the stressor, as I know it has for many people in the current economy.

Hopefully Tucker starts feeling better soon, please keep all of the Mito kids in your prayers, many of them are inpatient now and facing health issues.

Another Mystery Solved

Tucker has been a mess lately. His behavior has been terrible, he has been grunting and whining instead of talking. Gentle reminders of "use your words" have been throwing him into tantrums and crying real tears. The only solution Chris and I have had to this behavior is to put him to bed early. His teacher's best solution has been correct him, try to distract him, and to wait until the end of the day and send him home. He has been obviously "off", but he had no fever, his ears were fine (he usually gets ear infections), and so I was very scared that this was just some bad behavior phase. Chris and I have been strict with Tucker, putting him in time out in his room, taking away priveleges.....raising our voices very loud to be heard over his screams. So last week Tucker had a hard time at school, but he was very well-behaved at home. His teacher and I talked, and we figured that something was off with Tucker, but he was comfortable enough at home, so he must just be tired or not feel good at school. Well on Sunday Tucker threw a two-hour fit, that ended when he finally gave up and fell asleep. After a one hour nap, our sweet boy came back. Then on Monday his school behavior was good, and he was good at home. On Tuesday, it went back to poor, and he was awful at home. On Wednesday, the same thing happened. My mom has Tucker after school everyday, and she said he was very well-behaved for her (of course! he is very good for his grandparents, haha). But on Wednesday evening it was another long, bad evening. Tucker cried and cried, and when we tried to comfort him he screamed.....when we ignored him he screamed louder. Tucker's teacher called me yesterday around 3pm, she said that Tucker's throat looked fine, but she had a feeling that he had strep throat. She had it on Monday, and her throat didn't hurt, so she came to school. Then she felt bad, and left to find out she had strep. No one else in the class has it, but it was possible that could explain all of Tucker's issues, as he has made so much progress and has been so good at school until lately. So once Tucker got off the bus, mom gave him pain meds, and he was so good and happy. Then Chris got home and took Tucker to after hours. I met them there, but by the time I got there, they were already out with a prescription for antibiotics, as Tucker had strep throat. Well I felt like the worst mom ever, I have to say. Looking back, Tucker has been poking at his neck, rubbing his neck, and has been hesitant to talk for days now. Instead of thinking logically "maybe his throat hurts, let's get this checked out" my thoughts automatically go to "oh no, his trachea is collapsing" or "he is regressing, maybe this is his autism and mito getting worse and he will never talk again." Seriously.....I need someone around to suggest "Mrs. Townsend, calm down, I think it's strep throat." Usually when Tucker is off like this for longer than a few days, we take him to the pediatrician. I think this time I felt like he would tell me if he was sick. Also, no one in our families is sick, so it didn't occur to me. His pediatrician told me years ago "Tucker doesn't tell you he's sick like other kids tell you, but he makes it obvious in his own way." Well, he certainly did make it obvious. So today Tucker stayed home from school. Mom spent the morning with him, and he was very good and played quietly. He also slept a little. Chris came home from working around lunchtime, and Tucker was tired of being inside. They played outside for a while, but I guess it was too much for him. He was very tired, but Tucker has this policy of NEVER napping when Chris is home. It's like Chris is just too amazing, he can't miss a minute with him. So Chris and Tucker played nap tug-of-war, aka Tucker screaming for hours while Chris tries to rock him. He finally got him to sleep at 3pm, and is likely enjoying a few well-earned beers right now..... We had a busy weekend planned, but I think we will take it easy tonight and tomorrow. We were going to watch our niece Kinley tonight. I borrowed a Bumbo chair and walker for her to play in when she comes over to our house. But of course we don't want her to get sick, so we are moving our playdate back, hopefully just by a few days. We have a birthday party tomorrow, but we may not make it. We have an early morning trek to the Global Wildlife center planned for Sunday. Tucker gets up at the crack of dawn usually, so if he feels better by then, he will love it. It's a local safari place, where we all ride in covered wagons, and animals come up to the wagon and you feed them buckets of corn. Molli has been working very hard at being good at school, so her parents planned an outing for all of us. Tucker loves Molli so much, he cried the other day when we didn't take her home with us! So he will really enjoy the trip, hopefully he feels good by then.

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!

Back at 100%...or maybe 110%

Tucker started feeling better Wednesday, and by Thursday he was feeling great! He is cracking me up, and has been since he got his little personality back. He has taken out every toy, even ones that he hasn't played with in months. My house was so uncluttered for a few days, but it was only because Tucker slept for that time. Now that he is back up and around, stuff is everywhere! Not that I'm blaming all of the mess on him, but now I have to chase after him and keep him busy, so I don't have any time or desire to clean up....which is fine with me:) He cries when I take his toys away at bedtime and naptime. Tucker has slept in the "big bed" with Chris and me off and on since last November when he got his trach out. I finally got him into a good bedtime routine starting last Sunday night....but maybe it only worked because he was tired and sick. The last few nights he has really fought bedtime, but I think it is because he is trying to make up for lost playtime. Last night he had about 30 toys in his daybed. He wouldn't let me get rid of even one; So I let him keep them in the top bunk of the daybed, since he sleeps in the trundle. That lasted about an hour, when I went in there and found every single toy in his trundle bed, with no room left for him! I had to take every toy out except for Mike his turtle. Five minutes after that, he fell asleep. It is very obvious that he is bored and so ready for some interaction. He has been carrying around two toys, his potato head and plastic dog. He bosses them around, it is hilarious! On Wednesday he was telling Potato Head, "sit up, tay-toe head" over and over, so I peeked into the room. He had his dog set up on a pillow to watch TV with him, and he wanted Potato Head to sit there, too. Well Potato Head is round, so he kept flopping over, and Tucker got SO mad! I couldn't decide if it was cute that Tucker had an imagination, and thought that Potato Head had the ability to obey him...or a little worried that Tucker expected a plastic toy to do what he said. I went in and explained to Tucker that Potato Head is round, so he can not sit up by himself. A few minutes later I heard Potato Head hit the floor, as Tucker screamed "sit up Tay-to Head!" So Potato Head was removed from the room until his shoes could be located... Tucker's temper is getting him in trouble already, mainly because he is trying to do too much too soon. He is not happy anytime that I make him stop to rest. He is also getting mad at himself for not being able to do things as easily or as quickly...I keep telling him to SLOW DOWN....he is getting way too frustrated. Tucker has missed 7 1/2 days of school, and school is cancelled Friday due to Parent/Teacher Conferences, so Tucker will go back on Monday. For the first few days of sickness, Tucker stared out the window asking to "ride the bus", and he carried around his booklet with the pictures of all of his classmates. Then he got more sick and just slept, and I was starting to wonder if he forgot all about school. Thursday afternoon Mrs. Joy came back to our house for Speech Therapy; she hadn't been to our house in quite a while because of some insurance hold-up. I told Tucker that Mrs. Joy was coming over, and he ran over to the window, saying "Joy, Joy" waiting for her car to come in the driveway. I told him we had to wait for a long time, because we still had 45 minutes until his appointment. When she pulled up in the driveway Tucker was so excited, he said "Joy in the dribeway." He took her hand and brought her right to his work table to get started. Mrs. Joy said she could tell that Tucker had been out of school for awhile, he was desperate for attention, haha! It is pretty boring staying home with me for 10 days. For the first few minutes she had to be firm with him, then he fell back into the routine and she was pretty impressed. I love that Mrs. Joy has known Tucker since before he was 2...and back then he was such a mess! Of course, he still is;) But their therapy sessions used to be an hour of screaming and fighting...once Chris was home on a Thursday and almost went in and stopped a session, he couldn't take it. Now Tucker is so happy to see Mrs. Joy and he works very hard. We still only understand maybe 50% of what Tucker says. This leads to a lot of repeating and frustration. We have noticed that lately Tucker's problem is more with pronunciation, not vocabulary, which is a huge improvement. He seems to have the words, he just needs a lot of work to get them out of his mouth so that other people can understand him. Sometimes we will think he's saying something, only to realize he is saying something more complex or longer-something we had no idea he knew...so this is great. He also communicates to get his needs met, not to really have a conversation. Every once in a while he will point out random sights, like "beeg truck" (big truck) so for now that is what we count as a big conversation. This weekend I have plans for a Spa Day with Lauren on Friday, and a girls' day with the Galatas/Christian ladies on Saturday-we will shop, eat lunch, see a movie, and have a sleepover:) We haven't done this in years, haha! And I have never been to a spa. So I'm looking forward to it, and I know that Tucker will love having "Boys' Weekend" with Chris. They will go to Cabela's, play outside, and probably spend Saturday night at Mrs. Mia's. All in all, Tucker will be very happy to feel better and be out of the house. Me, too!

A little TOO Excited:)

I am probably about to majorly jinx myself but....Tucker has now been diarrhea-free for 24 hours!!! And to add to that, he had a solid stool today!!! I sent out a mass text to announce the news, haha, so sorry if you are my friend and didn't appreciate the text:) Tucker woke up with more energy today; I'd say that "normal" Tucker is at 100%, well today Tucker is at more like 20%, but it's much better than the past two days when he was down to about 1%. Yesterday and last night especially, I was very scared. Tucker had no energy, he just laid in his bed. Tucker has never ever been slowed down by an illness....even when he had an ear infection I wouldn't know, other than the awful smell! He went to school and had therapy, but was fussy....I made sure he had some extra sleep during that time, and then he was fine. But this sickness was just something else....really freaked us all out:( Last night Chris and I broke out the sat monitor to check Tucker's oxygen (100%) and heartrate (99), along with checking his blood sugars more often (stayed in the range of 100-119). Tucker's blood sugar is too high, we all know that. What I didn't know (thanks Missy!!) is that a quick increase in blood sugar can cause "dumping" which leads to diarrhea, especially when it happens after every feed (like Tucker's was) and when his energy is completely wiped out. So when other kids got the same virus Tucker got, they were sick for 2 days then went back to school. But the virus threw Tucker's whole body off guard, and his sugars possibly went nuts which made the problem much worse. To counteract this problem in the short-term, we could have put Tucker on continuous feeds, except we don't have a feeding pump! Tucker has always received "bolus" feeds, which means that we feed him five meals a day in his g-button. If for some reason his body can't tolerate that amount, we would move him to continuous feeds. This means that a bag of formula would be hooked to a pump and to Tucker's button, and that a small amount of food would constantly drip into Tucker's tummy all day...or for many hours a day. Tucker would carry the pump and formula around on his back in a backpack....a very common sight with Mito kids. Tucker's stuffed animal Mito turtle even has a removable shell since so many of the kids have the feeding backpacks. So last night I e-mailed Tucker's mito doctor. She emailed me today and said that Tucker should not be having diarrhea this long. So she suggested we stop his Levo-Carnitine, which I did today. Tucker has been on Levo-Carnitine since September 7th to give his body more energy. Dr. K's nurse said that we can restart it at half-dose once his poop is back to normal, and if the diarrhea returns then we will discontinue this med. It doesn't make sense that this would have caused the problems, but maybe since he had the virus the Levo-Carnitine didn't help matters at that point. She also suggested that we talk to Tucker's GI doctor and make a plan. The GI doctor would be the dr to order a feeding pump, and she is in New Orleans so we could always drive to her office if she needed to see Tucker. I called the GI doctor today, she was probably susprised to hear from me since we hadn't seen her since May. The nurse called me to get all of Tucker's symptoms, and they are supposed to call me back later. I want a plan in place in case this happens again. We are only at the beginning of "sick" season, so who knows what the next few months have in store for us. I am posting the link to an article called "The Poop Chronicles." All new moms know the importance of their baby's poop cycle-it has such a big effect on their happiness and health! Well, moms of special needs kids don't really ever let that fascination with poop go away! One of my main concerns when Tucker started preschool was that I wouldn't know all the details of each BM, which are an important indicator of his overall health. This might sound silly to most people, but it was a big deal to me. The past 9 days have given me a whole new appreciation for the moms and dads of the kids who deal with chronic GI issues....I really hope this sickness is over and not a new symptom for us, as I don't think I'm cut out for this. http://articles.complexchild.com/oct2010/00242.html

Day 7 of Sickness

Tucker is still sick:( I feed Tucker 3-4 times a day, and after each feeding he has diarrhea at least once. Then I give him Pedialyte and he usually goes again. Poor baby, he has the drill totally down! Wherever he is, he screams out "change my diaper!" which sounds more like "shashe ma doppa." He is not allowed to move until we get the whole set-up: diaper, wipes, anti-bacterial cleaning wipes (for the floor), towel, and two shopping bags. Then he stands there while we strip him, clean him off, and re-dress him. He is SO tired all day long:( On Saturday he had several hours where he felt good, but since Sunday he has been laying around pretty much all day, and for most of the day and night he is asleep. He is so tired that he barely talks....he just points at what he wants and sometimes cries if we can't figure out what he wants...he sometimes just gives up. Luckily Mickey Mouse has been on the Disney Channel pretty much nonstop lately, so Tucker is content to lay in front of the TV. The favorite part of his day is his bubble bath. I bought him a big bottle of pink bubble bath on Sunday, and he is sleeping on the rug right now with the bottle right next to him! Yesterday Mom and I took Tucker to the pediatrician. We took him to the after hour clinic on Friday night, and the dr. there said he was okay and not dehydrated. He "prescribed" Immodium (it's really over the counter) which I went out and bought...then never gave Tucker. His pediatrician has made it VERY clear in the past that I should never give Tucker immodium or pepto, nothing like that. The last time we really had this problem was two years ago, so I thought maybe it would be okay to give it to him now that he's 4. However, I wanted him to be able to give me a sample for testing on Monday, and I was scared that he wouldn't be able to go at all if I gave him medication. Tucker was again very excited to go to the doctor! He wasn't quite as energetic as Friday night, poor kid, but he was still happier than he was at home. We waited a long time in the office (they fit us in at the last minute) and Tucker was okay for most of it. Then right before the dr. came in, Tucker pooped all over the place! I had brought a beach towel, several changes of clothes, and many bags...good thing I did.... The dr said he is not dehydrated at all (yay! for the g-button!!), and that he seems to still have a regular virus. His poop was sent off to be tested, so we should have some info about what's going on by Wednesday afternoon. I talked to Tucker's teacher, she said that the few kids who were sick last week only stayed out for a few days and are all already back....except Tucker. So maybe something is going on with him, or maybe his body is taking forever to fight this sickness off. I really hope it's not that his body is just taking forever. That would not be a good sign. The dr. said that a toddler having a virus for this long is very common. I told her then why hasn't anyone ever heard of it?? Not my mom, Mrs. Mia, my aunts, my grandma, my friends with kids?? I know that he could have much much worse going on, but this virus is just really taking so much out of Tucker, I want it gone! :( The doctor also said that we were NOT to give him Immodium, I said "I knew it!" It was so hard to not give it to him this weekend, to just give him a little relief. But I'm glad we didn't, because the dr. said that once the medicine wears off, the kids' symptoms usually come back with a vengeance. Thanks for reading my complaints, I am hoping that Tucker gets rid of all this soon!

Still Sick, and pretty Pathetic!

Today was day 5 of the stomach bug, and each day seems to get worse. Yesterday was the worst day as far as the number of times I had to clean Tucker (poor baby), but today was worse because he is just so tired:( I had started the BRAT diet, and it clearly wasn't working, so yesterday I hit my gross-out limit as well as my worried limit and took Tucker into the after hours clinic. I called Tucker's pediatrician yesterday (I had already talked to them Wednesday) and they said the lab would close at 5 yesterday, so unless I could get a stool sample into them by then, I would have to wait until Monday. Well it was already the afternoon and Tucker was napping, so I asked them what else I could do. The nurse said that really the only danger would be him getting dehydrated, and it didn't seem that he had those signs. She advised that I take him to the afterhours clinic just to make sure he wasn't dehydrated. Once Tucker woke up, he was much more energetic and happier. He spent most of yesterday laying in bed watching Elmo Firetruck (as we call it), or staring out of the front window pooping. Yuck... I think he is staring out of the window just waiting for the school bus to come along so he can leave! Anyways, he woke up looking and feeling better, but we were still taking him to the dr. I told him Nana and I were taking him to the doctor and he was WAY too excited! He hadn't left the house since Tuesday at noon, so he hurriedly gathered his clothes. He actually found a shirt, shorts, sandals, and socks-I was proud of him! Anyways, we packed his booksack with tons of diapers and extra clothes. I accidentally got two left shoes for myself; when I realized my mistake, I went to my room to look for the right shoe. He watched me and screamed out "shoes on! shoes on!" Poor kid, he thought he wasn't going to be able to make his big escape. He was SO happy to be in the car, and even happier when we picked up Mom and Gina. We dropped off Gina at her friend's house, then headed to the clinic. We checked in and only waited for about 15 minutes. The waiting room was pretty empty, then a little old couple walked in. Tucker's face lit up and he yelled "people!" I mean....really....the poor kid has been stuck inside with me for three days, obviously he is going insane! The doctor examined Tucker and said he was definitely not dehydrated. He said that it's no fun having diarrhea for this long, but as long as he is getting pedialyte and the Brat diet he should be fine until Monday when we go in for testing. At that point, I said "no, no this has to be gone by Monday, I am losing it!" The dr. told us that he is not contagious, so that was good news. As long as we wash our hands after cleaning him, no one else should catch it. He also explained that I was doing the BRAT diet all wrong. The diet is supposed to be mainly rice and toast, with a little bananas and apple. Well, Tucker is tube-fed, so I can't really shove dry rice and toast down there. So I was making 90% fruit mixture with a little cereal. Last night I switched the mixture, along with a lot of Pedialyte to make it go down his tube. From last night up until today at 4pm, he didn't poop at all. I thought he was cured:) Then at 4 pm, he went all over the place, followed by another mess at 6pm, which Mom had the pleasure to clean. After that he was done; We were at Mom's for a trunk show; My friend Kristin makes adorable children's clothing, so I held a trunk show at mom's today. This morning Tucker seemed better, and he was begging to get out of the house. My niece Aliyah had a birthday party at lunchtime today, but I didn't want to go to the party in case Tucker made a big mess....they have a new house with a lot of carpet, so I was just being practical! Mom came over to get our present for Aliyah, and Tucker cried and cried "Nana House! Nana House!" So I promised him we'd make it to the trunk show (mom had offered to have it there whether I could make it or not, since there were several people who couldn't wait to see Kristin's cute stuff). For a while he was fine, until the pooping started. Then he was fine just laying in Sarah's bed (for those of you who don't know, NO ONE is allowed near Sarah's stuff, so this is true aunt love!!) or following Molli around the house trying to hit her. (Lord help us, when he is feeling better he is in for some strong discipline!) At the end of the show (the whole thing lasted about 1 1/2 hours), Molli walked next door to Paw Paw Ed's and that's when Tucker lost it. He was crying on the floor screaming "Paw Paw, Paw Paw," and that was when I knew he was done. I put him in the car and let him see Paw Paw and Maw Maw for a short visit before taking him home. At home, I fed him even more of the Brat Diet/Pedialyte mixture, and then rocked him. His eyes lit up when he saw the LSU/Florida game (he smiled and said "fooball") but then he laid down on me and demanded "sing." A few minutes later he crawled off my lap and laid on the rug. I asked him "you want the blue bed?" He didn't even pick up his head, just said "boo bed." I carried him to his room and tucked him in, he was asleep by 8 pm. I am thinking tomorrow we may move him back to his regular food. I have seen almost NO difference, and I think he is way too tired without his regular calories and protein. Maybe my plan will backfire, but I can't see it being worse than the last two days have been. Plus Chris is on his way home from the hunting camp right NOW and should be home soon. He missed the opening weekend, and won't be able to hunt for awhile, so he went this weekend. We both thought that Tucker would feel much better and it wouldn't be a big deal for Chris to be gone, but Tucker has gotten worse. So Chris got to hunt twice on Friday and Saturday, and now he is coming home, thank goodness! Mom has helped me out a lot, but it will be nice to have Daddy back:)

Still Sick, but Not Slowing Down

Tucker came home from school on Tuesday with diarrhea. It is Thursday night, and he and I are still home...he will not be going to school tomorrow. He still has an upset tummy every time he eats; other than that, he is his regular active, happy, bossy self. On Wednesday, I had already decided that he was staying home, so I didn't set the alarm clock to let us both sleep in. Well at 7 am, Tucker was standing next to my bed, smiling, saying "get up, get up." I thought, maybe he feels better? Then I realized he reeked....and the smell was coming from his diaper...lovely! So he definitely stayed home, even though he had no fever, and wasn't even tired enough to take a nap that day. He kept looking out of the window and asking to "ride the bus, ride the bus." By the end of the day, we were both tired of the diaper changes, and he was crying each time I fed him, because he knew what would inevitably follow. Last night I put him on the BRAT diet (bananas, rice, applesauce, and toast) to help him out, but so far that hasn't worked. Mom and Gina brought over about 20 jars of banana and applesauce baby food today, along with about a gallon of Pedialyte so that Tucker doesn't get dehydrated. I called his pediatrician today, and they said that a stomach virus is going around right now. (Tucker's teacher said they have already sent home 3 kids with it.) All they can do for Tucker is just keep him on the BRAT diet and watch for dehydration. This can go on for 5 days total before they would look into it further. So far, I think he is fine with his fluids. I think he is just in danger of losing his mind; after over 48 hours on house arrest, neither one of us is doing too great! I don't even want to take him to my parents' or Chris's parents' because I don't want anyone to catch his stomach bug and have to miss work or school. When Chris comes in the door at night, we are both so excited:) I am happy because I get to complain and get a break, and Tucker is excited because he thinks surely his Daddy will let him outside to play! I have actually kind of enjoyed having Tucker home with me, it's just that we are both used to being on-the-go, and he is especially used to his routine. He has been carrying around his booklet with all of his school friends' pictures. He can sit and point to each one and say their names, it is so cute! I told him that once his tummy feels better he can go back to see all of his friends. We had a few visitors so far that braved the exposure, and Tucker has sent them all home. Yesterday Alexis dropped off some clothes for Tucker, and he hugged her then tried to shove her out of the door. Today he did pretty much the same thing with Mom and Gina. At least when Mrs. Mia came over tonight he let her rock him for a few minutes, then he said "Sissy bye bye." Mrs. Mia and I were talking, and she told him she was visiting a little while longer. He was not happy, and kept crying "Sissy, bye-bye" until she finally left, which was at least 10 minutes later. He really likes watching people drive into the driveway, and then he likes sitting by the window and watching them drive out...but the in-between, visiting time is not really exciting to him! Even though Tucker has many medical issues, I am not used to Tucker being "sick." He has pretty much never thrown up, he almost never has an upset tummy, and he hasn't had a fever in a very long time. I actually had to go out and buy a thermometer the other day (which I have been needing to do for awhile) because I thought the one I had was broken. They both read at about 98.7 degrees, which is normal, but he felt so hot. I thought that maybe I just didn't take his temperature correctly since I hadn't done it in so long. Today Tucker took a long nap, and he was still tired at bedtime tonight. This is very un-Tucker like behavior, so I hope that his little body is just fighting off this illness and he will feel better soon!

Emotional, Action-Packed Week

I have had quite an emotional week, or I guess it's been more like 10 days at this point. Early last Friday morning, I learned that sweet Samuel had passed away due to complications of mito. I wrote more about him two posts back; Samuel touched so many lives, and the whole mito family is mourning his loss and praying for his family. That Friday I kept Tucker home from school so I could take him to the pediatrician; he had been having a cold for about two weeks, so I brought him in to check it out. The doctor prescribed Omnicef, a broad antibiotic, but said he really looked fine. His cold didn't really go away until this Monday (8 days later), but I was reassured that nothing big was going on. The next day was Tucker's last TBall game. I don't know if we'd call this TBall season a success, but at least we made it! Anyone who has been to a game knows that Tucker spends 99% of the time trying to escape off of the field, either to sit in the stands or to "play" with trucks in the parking lot. Once my Dad was silly enough to park his truck near the dugout (of course so that Jessica wouldn't have to go far in her wheelchair), and Tucker could not contain himself! Dad had to move his truck farther away so that they could get some peace! By the 4th game, Tucker at least would sit in the dugout during his team's turn to bat, then go up to bat, swing the bat, and run to all the bases. So that's a big deal, I suppose. But forget actually fielding the ball; we all agree that it was just too hot and boring for any 4-year-old to really enjoy playing in the field, especially Tucker. Tucker got his medal for playing TBall, and we could not get home fast enough, I don't think any of us were sad to see the season end, although we will miss the great families we have met. A few hours later we learned that Chris's brother Justin got engaged to his girlfriend Jackie:) We are all very happy, Jackie and Justin started dating a few weeks before Tucker was born, and she really fits in. We love her so much, and Tucker seriously loves bossing her around. It's really pretty bad, he goes for either Jackie or Alexis as soon as he walks in the door over there. So they should be getting married next summer, and they want a beach wedding. That will be a lot of fun, and I'm sure Tucker will love it. On Sunday I went to church for the first time in months (Thank you Samuel, as my mom said!), there are so many feelings and thoughts that go right here, but that's for another time. Anyway, after church, I started making plans to go to Texas, as my whole family understood my great need to be present for Samuel's funeral and celebration of life. My only obstacle was finding people to care for Tucker. Tucker is not hard to take care of....at all!! I think that for the first years of his life, his care was so complex, so Chris and I got used to taking care of him on our own. We were too scared to leave him with untrained lay people, i.e., our family, so Tucker had nurses or us to care for him. My mom was trained from Day One to care for him...thank goodness, or I would have lost my mind. So anyways, now that I stay home with him, I often have the feeling that only I can take care of him, like I am irreplacable. I let that go, and his aunts took turns watching him afterschool, Chris had him at night, and Mrs. Mia and Mr. Ricky gave him his morning meds and got him on the bus. By all accounts, Tucker had a great few days, even though he did miss me enough to make me feel good about myself, just a little:) Traveling to and from Texas, attending Samuel's funeral, burial service, and celebration of life involved so many emotions. I have only been to a few funerals in my life; I could go on and on about Samuel's services, but I will just say this-Samuel touched so, so many lives, as shown by the huge crowd that showed up, and all of the stories people shared about him. The services were beautiful and were a real tribute to his life; I was blessed to witness them. When we got home Thursday morning (Mom and I spent Tuesday night and Wednesday night with the Poches in Lake Charles to cut down on driving and to see Aunt Kim for her birthday), I had a few hours to get myself together for Lacy's and Steve's rehearsal dinner. I have known Lacy since we were 10 years old, and I guess I met Steve about 3 years ago. Chris and I have become good friends with Steve, and we were both in the wedding this past Saturday. We have had a blast with all the wedding celebrations; we have met some great people, as well as had some nice, normal stress to keep our minds off of Tucker for a while. Thursday night was a lot of fun, and Chris of course cracked everyone up at the dinner. An added bonus was that our good friend Rachel drove in from Illinois with her boyfriend Sam. We hadn't seen them since January, and it was WONDERFUL to see them! We chatted Thursday night, then Rachel spent the day with me and the other bridesmaids Saturday getting ready, laughing, watching Glee, and eating. Chris and I ran some last-minute wedding errands on Friday while Tucker was at school. Chris went to Steve's bachelor party Friday night (which I hear was pretty tame, thank goodness), and Saturday morning Chris and Tucker drove me over to Heather's house to get ready. On the way there, we heard the Eminem and Rihanna song "Love the Way you Lie." As we all know, Tucker loves any music with a beat! I glanced back at one point, and he was dancing like a robot to the song; I tried not to laugh, then Chris saw him, too. We told him "you're a good dancer!" He was so proud of himself and he "danced" until the song was over, I loved it:) Saturday was wonderful; I loved having a girls' day, and getting my hair and make-up done, as well as wearing a "princess dress" as Molli would call it. After my hair was fixed, I wanted to take a nap! The bridesmaids all make fun of me, they warned me to get enough sleep before I came over on Saturday. I told everyone, it is hard for me to just sit around with nothing to do except relax, I am not used to it! When I sit down for that long, my poor body just wants to sleep, haha:) Lacy made an absolutely beautiful bride! I knew she would be, but it was still a nice surprise to see my childhood friend transformed into a bride:) We have been through so much together, and it is really amazing to see how far we have come in the last few years. Lacy and Steve are one of those couples that I am really proud to call my friends, and it was very nice for both Chris and me to be part of all of their festivities. After they cut the cake, all of the bridesmaids were called to the cake for the cake pull. I thought I shouldn't go, since I am married. Usually the cake pull is for single women, they pull a ribbon to see who will get married next. Well Lacy surprised us by picking 8 charms, and each charm was attached to a ribbon labeled with our names. We all lined up and pulled the ribbons with our names. The one that said "Leigh" had an angel charm on it. I wasn't sure what that meant, then I received the card that said "emotionally strong." Lacy had chosen a charm for each of us, and that meant so much to me that she took that time on her special day. By the end of the weekend, we were all exhausted! I spent a good portion of Monday in my bed, I needed to catch up on my rest:) I'm sure I missed some high points of the week, but for now I just wanted to document what I could. Mom had to pick up Tucker from school early today due to a nasty tummy ache (I was in Baton Rouge for a dentist appointment, but I quickly met Mom and Tucker at home). He has been sleeping well the last few nights, and today he woke up in a great mood, asking to "ride the bus, ride the bus." A few hours later the teacher called saying he had to be picked up right away because of his tummy troubles. He hasn't had runny stools in a very long time, so I actually asked the teacher if she was sure! He came home and slept for 3 hours, which is some kind of record for Tucker. He didn't have a fever, though, he was at 98.6....which technically is a fever I guess as his usualy temperature is closer to 97....weird, I know. He is still having nasty BMs, so he and I will stay home tomorrow. He has been running around the house like usual, though, so hopefully he feels much better soon and it was just a small stomach bug. It is October, which should signal the beginning of Sick Season....I would rather that it all just stayed away!