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.

Big Blessings=Lots of Work

“Yes, He, who is in me, is greater than I will ever be, and I will rise”

“I will lift my eyes to the maker of the mountains I can’t climb”

“Oh Father, give me the strength to be everything I’m called to be.”

Our little family has been handed some major blessings in the last few months, and as any good blessing will, they have brought along tons of work. I struggle with all of this as I am only human, after all, and sometimes it all seems like too much work. I know that God has given us all of this because we can push through and it will all be so worth it….but some days it is so tough, I admit it! For any KLOVE listeners, you’ll see from the above quotes that Christian music has helped me through many tough days and reminded me of our blessings.


Blessing One: More Amazing Feeding Progress
Tucker’s feeding therapist came for her second visit in late February. Tucker was amazing, and did great with the new foods: avocado, tropical fruit mix, mashed potatoes, and hummus. He also did great with learning to drink chocolate milk and coke out of a cup. We use Simply Thick to thicken the liquid up considerably, but we were still surprised at how well he did.

So, with Tucker doing so amazing, we now have a whole new list of foods to add to his list. Tucker also gained 2 pounds since we started oral foods, so Jennifer said we need to cut out more tube feeds! She said if he stays on that path, he will end up at fat camp, hahaha.

It is seriously a very delicate balance to manage Tucker’s diet. I organize most of our lives on spreadsheets…..but Jennifer takes the spreadsheet to a whole new level with the meal plan :) This is not a bad thing, by any means, because it’s really the only way to look at everything at once. It’s just very hard to piece together meals with the right sugar content, the right fluid content, and the right mix of preferred foods and not-so-preferred foods. (Picture Tucker seeing white beans coming at him and screaming “Mo! Abocado! Abocado!” because he wants the avocado instead of the beans, hahaha.) Also, funny story-most kids will hang around the kitchen when you’re mixing a cake, hoping to lick the bowl. Tucker hangs around when we blend up avocado, he puts his little fingers all over the bowls and licks it up, he loves avocado!

Because Tucker has mito, he needs some type of food or fluid in his body every few hours. With tube feedings, this was easy, because even when he is asleep we can feed him. Now he takes in so many calories by mouth that we have cut his tube feeding back to just two per day-one can of Diabetasource formula at school, and one 8 ounce cup of blended food before bedtime. While this is amazing, and such a blessing, I can not stress what a HUGE change this is, as I have spent the last almost 6 years feeding my kid through a tube. When he had sugar issues, it was scary, but we just cut the sugar out of his blend and put it through his tube. Now, his absolute favorite foods are pudding, yogurt, and any fruit…of course all of these foods are full of sugar, in particular the pudding which has the most and of course is his absolute favorite food. Thank goodness that avocado is low in sugar.

So right now, Tucker’s list of food includes: avocado, sweet potatoes, hummus, white beans, applesauce, tropical fruit mix, chocolate pudding, soy yogurt, mashed potatoes, and Boost Glucose Control shakes. He really loves the chocolate Lactaid milk, but I swapped that out for the Boost Glucose control because it has more nutrition and much less sugar. He didn’t even react to the change, so that’s great. We are hoping to get the Boost covered by insurance after we see the nutritionist.

Just a few months ago, I couldn’t have imagined that Tucker could eat so many foods. We are excited, but just so that everyone understands (and so that I can look back on this time and remember how far we have come), Tucker’s feeding sessions are not easy or like regular dinner time. They are very structured, and Tucker expects certain things to be done before and after he eats. All of the food that he eats is blended down to the point where there are no grains or pieces. For most foods, this means that we have added quite a bit of Lactaid milk to get it very smooth; then we add Safflower Oil to some of the food to add some good fat calories and to get it even smoother. Even something that you’d think is a good “baby” food, like applesauce, is WAY too gritty for Tucker to eat without getting blended first. This is not how it will always be, we will work to build his texture tolerance up over time; but for now, the blender stays out on the counter, and at least two foods are blended up each night. I’ve said this before, and it is even more true now…I feel like I spend more time blending Tucker’s food than actually being with Tucker. He is actually scared to death of the blender, so when I blend up his food he is at least one room away. My goal is to have at least two weeks of each food blended and frozen into ice cubes in the freezer, because we have got to get over the constant blending and move onto some sort of family night time routine. I think that we will actually buy a little freezer for the kitchen that will just hold Tucker’s foods. That way I can blend up a bigger batch, pour it into ice cube trays, then the next day pop out the ice cubes and seal them up into big Ziploc bags. That way we always know what we have and when to make more.

Even though the blended food is so smooth that you can’t see any texture to it at all, we still don’t just feed Tucker as it is. We set up one of his favorite videos (the current one is Mickey Mouse Goes to Wonderland), set out the two foods for that meal (one preferred, one not preferred), and the cup for the chocolate shake. We have a visual of two bowls, and one cup. Tucker has a book of Mickey stickers, and for each empty bowl or cup, he gets to put a Mickey sticker on the picture of the bowl or cup to signify that that part is over. He is very proud and happy when he gets to put the stickers on. Chris was pretty sick on the second day that Jennifer was here, so he missed the part of training about the visual aide. So on Tuesday morning, he started feeding him breakfast, and Tucker threw a fit….it was ugly :( I went in the room, and noticed there were no pictures of bowls laid out. Once I drew out the pictures for Tucker and told him he’d get his stickers, he was fine and started eating for Chris. Only a few people are actually trained to feed Tucker, there is just so much that goes into it.

We feed him only a certain amount per spoonful, and we have to use a particular spoon. He sits in his special chair with the buckle on it, and the tray in front, because when he feels more secure he does much better. He can also have a toy or two to hold or play with while he eats. He usually has one or more teddy bears watching the meal as well. We feed Tucker the non-preferred food first, so that he is still interested in eating the second bowl even if he is not very hungry. So really the first five minutes of each feeding are the worst, as I think Tucker is still testing us to see “wait, they expect me to do this again? They aren’t over this whole eating by mouth phase?” then he has to take a few bites to remind himself that no, it really isn’t going to kill him, and that the faster he eats the non-preferred food, the sooner he can get to the good stuff. Right now his meals are taking us about 30 minutes, and it’s pretty hard for him to sit for that long. We are hoping to get the time down soon. He has 3 big meals-breakfast, snack after school, and dinner time. He also gets two smaller meals at school during the day. I am trying to change the meal plan so that he’ll get more food at school, but so far we haven’t been able to figure out which foods to send with him other than his two favorites, yogurt and pudding.

Tucker’s regular ABA is going well, and his ABA therapists help feed him his afternoon snack. We have been short one ABA therapist for two months now….so Tucker has ABA two or three afternoons each week instead of the desired five afternoons per week. We have had several great therapists apply, but then fall through at the last minute. Thank goodness that my mom gets him off the bus on Tues and Thurs, otherwise I have no idea what he’d do after school. He is still making progress, but it would obviously be better if he had more therapy. So please pray that our family can get used to the new eating routine, and that we find a new ABA therapist that fits in with Tucker’s program and schedule.

Blessing Two: Check out Tucker's Picture :)

Yes, we are expecting a new little one at the end of September! SOOO exciting!!


So you may wonder (as I do every day), “well Leigh, you are hardly pregnant, how could a very small baby in your tummy be work?” This little one has zapped every ounce of energy in me, and has turned me into a nausea machine as well as re-igniting my childhood asthma….it is not pretty! So I am now on the 8th week of needing 10 + hours of sleep at night, plus 6 different meds just to get through the day. Thank God that I have had some energy return in the last week. I lost 4 pounds, but have now gained one back, so that’s good.

I have already been to the doctor more times than I can count, and had lots of labwork done. All is normal at this point, yay! I will be seen by the high risk doctor starting at 18 weeks, and we will do everything in our power to get to full term this time. Tucker deserves a healthy little sibling to hold and love on. For people in our area, pretty much every baby born from 1967 on was born at Woman’s Hospital….including Chris, Tucker, and me. That is where Tucker spent the first 8.5 months of his life, and it’s where I now volunteer for NICU parent to parent support. Well, a new hospital will open in June, right when I should be at 24 weeks. We are praying to get way far past that, and deliver in the new hospital. That will be exciting, though confusing for all of the visitors, I’m sure, as everyone is so used to the current hospital.

Tucker has been asking for a "sistah" since before I was even pregnant....what we all think he really wants is for his cousin Baby Kinley to move in, haha. I guess he wants a sister because then he can keep his daddy all to himself and the baby can hang out with me. My heart has broken as I haven't had the energy to care for Tucker the way that I like to lately. Chris, my mom, his therapists, and Chris's parents have done a great job, but when I hear Tucker at my bedroom door "Mama, come play wit me" my heart breaks! So please pray that my energy comes back and we have a long, boring, healthy pregnancy. Tucker has enough changes coming, he needs his mommy at her best for the next 6 months.
 
One last thing: Tucker has an appointment with the surgeon to check his leaky g-button this week and a follow-up with the ENT as both of his ear tubes are trying to fall out but refuse to, and he is on his third ear infection in three months. I hope to update on both of those issues soon. Tucker also starts T Ball this Saturday, let's all hope he stays on the field this season :)