Easton's Arrival

I've tried to put together most of the story of my pregnancy with Easton and his arrival. I'll go over my emotions about Tucker and his transition in another post.  I have been working on this post for a while, just whenever I have a few minutes when no one needs me ;) So it may seem all over the place, and it's very long. Enjoy! 

 

"Well no matter who you are, and no matter what you've done,

there will come a time when you can't make it on your own.

and in your hour of desperation, know you're not the only one

praying Lord above, I need a miracle."

 

After Tucker's birth, long hospitalization, host of medical issues, and multiple diagnoses, Chris and I weren't sure if we were going to have more kids. We love Tucker so much, and we are great with kids....but we were scared to death of another NICU stay and/or another bout with pre-eclampsia that could put my health in danger again.  Then Tucker was diagnosed with mito, and we realized that any future babies could have health issues regardless of their gestation at birth....

For years I couldn't look at babies...but over the last few years God started working on my heart, and giving me hope that a second pregnancy could be different...and even if it wasn't different at all, it would still be worth trying.

 

This pregnancy was rough on me...emotionally and physically...I had morning sickness that lasted all day and night, I was sleeping up to 16 hours each day for the first trimester, on 3 meds for nausea, and still having no relief. When that ended at 14 weeks, I started having uncontrollable asthma symptoms. I started 3 more meds for that, and got it under control. I cried hard at least once per day throughout the whole pregnancy, so scared that if my body couldn't handle the baby at 8 weeks or 17 weeks...how was I ever going to make it past 27 weeks? What would it do to me, Chris, and Tucker if we lost the baby...or if I had to spend months on bedrest, or months in the NICU with a sick baby?

 

My OB sent me to the high risk doctors at 12 weeks, where I had one of the specialists describe pre-eclampsia to me in depth....he went over how the pre-e basically starves the baby, and he or she has no nutrients. I cried my eyes out and wondered what the heck I was doing.  My OB and the high risk doctor told me that I had about a 10% chance of having pre-eclampsia again, and that as long as the baby was growing well, things would be good. I was followed by the high risk doctors and my OB, so I had ultrasounds every 6 weeks, along with many tests.   My first set of labwork looked great, then all of the preliminary tests came back normal throughout the pregnancy....which was different than Tucker. I started to feel like maybe things would be different.

 

At 24 weeks, the high rish doctor released me, he said the baby looked great and that I had a great chance at getting to full term. Then at 27 weeks, my blood pressure went up for a few days. Then it went back down. My OB ordered a urine test and bloodwork, and it all looked good. I felt like I was being over cautious, but my OB said she'd do any tests I needed.

 

At 30 weeks, 5 days, we had another ultrasound. Easton measured perfectly at 3 pounds 15 oz, Chris and I were thrilled. We thought he'd be huge by the time he was born. For about one week, we were so happy. Around 32 weeks, my body blew up..I was so swollen all over, which is a sign of pre-e. But my blood pressure was still low. My OB was still concerned, so she ordered another 24 hour urine test (I was getting used to filling up the big red jug by this point!), my protein was up to 600....which was high, but not terrible. She ordered another 24 hour urine test and moved me to weekly appointments. At 33 weeks, 1 day, the OB asked me to come in for a BP check. My BP looked great in the office. She said if my BP was higher she would have admitted me because of the protein level. She ordered another 24 hour urine test, and told me to stay on bedrest at home over the weekend, then turn in the urine that Monday. We'd get the results by Tuesday, when I'd come in for another appointment. (The new hospital opened on August 5, and the new Physician's tower opened August 6. Within the first week of it being open, I was there 3 times! I knew the building and parking lot better than some of the employees.)

 

Over the weekend I rested a lot! I felt great, my swelling went down, and my mood improved.  I packed my hospital bag for Tuesday morning just in case, as being stuck in the hospital with nothing of your own is awful (and I would know!).  At 33 weeks, 5 days, I had another growth scan. Easton was measuring 4 pounds, 8 ounces....he had only gained half a pound in 3 weeks. I knew at this point that something was very wrong. I had been taking my blood pressure several times a day at home, and it was high sometimes, but as soon as I'd lay down it would go down. My protein level went up to 1400 in just a few days and my blood pressure was measuring 150/100 in the office, so my OB admitted me to the hospital for bedrest.

 

I felt like I was in good spirits at first....I was so much further than 27 weeks, and I knew that was good. But then I was more honest with myself and realized I was terrified. I know babies who were born at 33 weeks, 34 weeks...and have needed to be intibated, have spent months in the NICU, have gone on to have long term health complications. and of course this would be Tucker's little brother we're talking about! I wasn't going to have my happy birth experience, where I got to hold my newborn right after delivery, and we got to have family and friends all come in immediately to see us all, and introduce Tucker to his baby brother. Even in the best case scenario, I'd be spending weeks in the hospital away from Tucker, and my maternity leave time would be used up for bedrest, not for being home with my baby.

 

Within hours of being admitted, I realized I was having way too many contractions (I didn't even feel them!) so I got a shot of brethene and they calmed down. I received the first round of steriod shots to help Easton's lungs, and my BP was monitored every hour. My OB knew that I was terrified of being put on magnesium. With Tucker, I was so sick that I was put on mag right away and left on it until over 24 hours after he was born. Mag is (I suppose) a great drug, it can help stop labor and it also saves the mom from seizures and other problems that pre-e can cause. But it feels awful!! It makes you feel like you are boiling, and no matter how much ice they put on you and or how cold the room is, you feel miserable. Your whole body feels very heavy, and you feel drugged, so you can't really talk or get out of the bed. I was so scared that I'd be on mag during bedrest, but thank goodness I wasn't! So I was able to think and talk during bedrest, and even have bathroom priveleges (which is a huge deal! lol). I decided this wouldn't be so bad.

 

Then on that first night my dad and sisters came to visit me and to deliver medicines that I needed from home. I was very happy to see them, and they stayed for just one hour, but after they left, my BP was the highest it had ever been. I knew if my BP got too high that they'd deliver Easton, so I decided then that I wouldn't have any visitors other than Chris or mom.  I wanted Easton to stay in at least long enough to get two rounds of steriod shots, and my goal was really to get him to 37 weeks.

 

The next few days were kind of boring, but very restful. My swelling went way down, the carpel tunnel syndrome that had hurt my hands so badly during the pregnancy disappeared. My OB rounded on Wednesday and said that if the 24 hour urine test came back around 1400 again that I could go home for bedrest and move back to weekly OB appointments. I was thrilled! Of course it came back at 3600 (they deliver at 5000) so I was there to stay.

 

I kept requesting a visit from the NICU team, desperate to have some idea of what we were expecting with a 34 weeker at the new hospital.  The doctors weren't very concerned, they said that 35 weekers usually don't even go to the NICU. Well, this was a boy (wimpy white boy syndrome) and Tucker's brother! So I knew that a 34 week pregnant woman wasn't the NICU dr's top priority of the day, but I was so relieved when I saw one of the doctors come in to see us (of course I knew she was a NICU dr because she had taken care of Tucker).   She remembered us (as did many of the respiratory therapists who saw me during bedrest) and told us what we could expect at delivery. I was so very scared and sad about being separated from Easton at delivery. During bedrest, he was still with me. I knew that as soon as he was born they'd take him away, and I was worried that I'd be inconsolable.  The dr said that this wouldn't be anything like Tucker's delivery-best case scenario was that Easton would breathe on his own, and Chris and I could both hold him before he'd spend a week or two in the NICU. 

 

I would still be on mag for at least 24 hours (I kept asking my OB if each day was "the day" I'd be put on mag, everytime she saw me), so I wouldn't be totally "all there" for the delivery, but I should be awake at least and be able to understand what was going on. I just prayed and prayed that Easton would defy all expectations and give us a best case scenario, even though he wasn't getting his full 40 weeks.

 

On August 20, 2012, after 34 weeks and 4 days of pregnancy (including 6 days on hospital bedrest), Easton arrived, and we got our miracle.

 

 He weighed 4 pounds, 1 ounce, was 17 inches long, and was born breathing on his own. He started screaming as soon as my OB held him, and that was the best sound I've ever heard!

 Chris got to hold him right after he was born.

 And once my c-section was done, so did I!
My OB took a while to finish my section, so the NICU team was ready to bring Easton over to his room. Chris asked them to please keep him in the delivery area so that I could hold him. I don't think Chris will ever understand how much that meant to me.

These moments were so happy; unfortunately, after this Easton had to go to the NICU while I went up to recovery. Then I couldn't get out of bed for 24 hours while I was on the mag so everyone else went to visit him while I stayed in my bed. And once I was off of the mag, I fought pain and exhaustion to get over to the NICU to see Easton.  He spent 8 days in the NICU; while that was nothing compared to the 8 1/2 months Tucker spent there, it was still very hard for this mommy to be away from her new baby. All of the emotions from Tucker's birth came back, and the sadness from being parted from Easton were added to them. I knew that Easton would do better than Tucker did, but I also knew that I'd be leaving the hospital without him, and that he may stay for 3 weeks or so.

We took this picture about a week after Easton came home.

The way that Tucker has taken to Easton is also its own miracle, but I'll have to devote several posts to that subject.

Dusting off the blog....

Over the past few months Tucker’s blog has been so neglected…we have had so much going on, and no time to process any of it.


The summer is very busy for Chris and me both at work. We also try to fit in many appointments over the summer so that Tucker doesn’t miss too much school. Then in early June Chris sprained his ankle (badly) and added to the dr appointment/medicine/daily needs list around here….and we were really reminded that caring for Tucker is a two-person job! This pregnancy has been hard on me (everyone keeps praying for September to come so that they can say they’re ready for it to be over, haha), so I have not been nearly as useful as I like to be. We take care of Tucker in certain ways, and we have just been unable to do that lately.

Tucker had a very hard time transitioning from school to the summer time….bringing back behaviors that have been gone for over a year since he started ABA therapy. Weird behaviors like chewing on his shirts until they’re full of holes, stereo typical autism behaviors like playing with poop (thank God that one ended quickly!). Dangerous behaviors, like escaping from the house and walking down the road, long enough to be picked up by one of Chris’s friends….enough to make this mommy cry her eyes out for days. He developed a bald spot from pulling on his hair from anxiety…luckily we think it’s growing back.

Tucker has 35 hours of ABA therapy per week, and his team this summer has been amazing. With my pregnant brain and my hectic work schedule, I haven’t had to worry about them missing any shifts or neglecting anything. His feeding is getting much better, he is learning all of his letters, and they take him all over town for rewards, like playing in the McDonald’s play land and going to the mall. He can now wait for 8 minutes….which is such a big deal I can’t even explain that. Chris and I can barely wait on things we want for eight minutes ;)

I don’t have much leave time off of work…well, I do have a lot of time, the issue is that I use it up very quickly with Tucker. There are dr appointments, procedures, IEP meetings and conferences at school, then the regular events that all parents want to attend like field trips, etc. Of course this spring I used a lot of sick time for OB appointments, time off for asthma and morning sickness, etc. so we have been rationing out my remaining leave time over this summer so that I’ll have a few paid weeks off when the baby arrives. This means that Chris and his brother Andrew took Tucker to Houston for a 24 hour EEG while I stayed home to work. This was back in June, and I was a nervous wreck. I was so upset when I realized that the tech had to restrain Tucker physically to get all of the leads on his head….I never would have allowed that….ever. Chris said Tucker wasn’t acting up, the guy just came in and said they restrain all the kids, so then Tucker started crying and didn’t stop for pretty much the whole 24 hours. He and Chris were miserable. Tucker is usually so interested in the medical procedures, well during that hospital stay he cried every time he saw scrubs. The following week Mom, Gina, Jene’e and I took him back to Houston for a sleep study. He started crying when he saw the guy come in to attach his leads, but luckily this tech was amazing and Tucker just needed me to hold his hand to sit still.

Mom, Gina, and Jene’e had an adventure around Houston after 9pm trying to find food for the starving pregnant lady ;) It was scary, to say the least, but I was so grateful they were there. Tucker has also seen the eye dr, pediatrician, surgeon, immunologist, and dentist. We missed seeing the mito specialist in June because she was on maternity leave.

Despite all of the craziness this summer, Tucker has had a lot of fun as well. Chris and I took Tucker to Kentucky in early May to visit my family. We had been promising Tucker that we’d take him to KY for months and months, but it never seemed to work out for us. So we decided that early May was good for both of our jobs, and I was about 18 weeks pregnant, so not too sick anymore, but not too big or worried about blood pressure yet to stay home. Tucker had so much fun! And so did Chris and I, Chris even went to the KY Derby with my uncle and cousin. We made the 12 hour drive in 13 hours with stops on the way, then took more time on the way home. Tucker was so good in the car, we hope Easton likes the car as much as Tucker does!

We started the summer out by celebrating Tucker’s 6th birthday in Lake Charles. This is pre-sprained ankle, haha, so Chris and Tucker had a blast playing in the water park with Morgan, Grace, and Molli. Tucker is the odd one out being the only boy, so he played dolls with Molli and Grace and then got upset when we wouldn’t let him take a bath with the girls! On the way home we brought Tucker and Molli to Chik Fil A to play on the playground, they were so happy.

At the beginning of the summer we spent a good bit of time at Susan and Joey’s swimming in their pool. Tucker loved that, but as the summer went on I got more tired and Chris couldn’t really swim or climb into the pool with his ankle. Matthew and John Michael came down from Kentucky and spent a week with the family, so that was a lot of fun. There were BBQs, trips to the movies and pool, and of course video game times. Tucker is so funny with the boys, he sits right in the middle of them and acts like he belongs with teenagers.

During our trip to Houston, we finally brought Gina and Jene’e to the Galleria mall (it’s not really called that anymore, but we still call it that). They shopped while Tucker made another Build a Bear and then played in the huge kiddie play area. I had to drag him away because it was time for lunch and another surprise-the double decker carousel. He got to ride it once before lunch, and then once again after lunch. He was so happy.

We signed Tucker up for one week of summer day camp. It was at a Baton Rouge park, and the first day I brought him he cried for an hour. He knew the playground was outside, but he couldn’t go outside because it was inside time….so he cried and cried. By the second day he was up at 5am asking to “go to summer camp.” On Tuesday they took the kids to the movies, on Wed they spent the day at the camp, then Thursday they went to the water park, and on Friday they were back at the camp. Tucker’s therapists went with him each day, the other campers were jealous of his “girlfriends.” We didn’t sign him up for more time at camp because it was a very long drive from our house. I just learned of two other camps that are closer to our home and meant for special needs kids, so next summer he’ll probably go to the nearby camps for several weeks.

Sissy and Pops treated the 3 of us to a weekend in Biloxi at the end of July. It was very nice to get away, and the weekend was full of Tucker’s favorite things-staying in a hotel room, swimming in a pool, and playing on playgrounds. We even took him for a short trip to Wal Mart (I drink 5-6 bottles of water per day, and I ran out), where he got a big bag of Cheetos. We also took him to two different arcades where he “rode” the motorcycle games. He really just pretended to ride them, he also used all of Chris’s quarters in the claw machine trying to win a stuffed animal. I hope he doesn’t expect every hotel we stay in from now on to have all of that fun stuff!

As of today, I am 33 weeks 3 days pregnant. This is over 6 weeks more pregnant than I have ever been. This is fantastic and amazing….it is also surreal. I am such a first-time pregnant lady, asking my OB so many questions, wondering about delivery, bottles, breast feeding, etc. Things that moms with one kid should already know. I had never heard of getting asthma during pregnancy (which I have) or carpal tunnel syndrome (which I also have) or all kinds of other odd maladies. I have heard of the hormones and crying, I think Chris just avoids me now because he is scared he will say something that will make me cry ;) We went to an ultra sound at 30 weeks 5 days, and Easton weighed 3 pounds 14 ounces…Chris and I were in complete shock….I said “no wonder why my back hurts! There is a real baby in there!” hahaha, Tucker never had a chance to get that big and cause all of this craziness…so by now Easton should be well over 4 pounds, that is just insane to me.

Tucker knows all about Baby Easton….well he thinks he does! He can’t wait to change his diaper….over and over again, so we better stock up now. You ask him “what do you do with a baby?” “how do you make a baby stop crying?” “what are we going to do when Easton is born?” and the only thing he answers is “change his diaper.” He practices putting the baby doll to sleep, just to “wake” him up a few minutes later to fake change him. We are going to have to lock Easton in his room so that Tucker can’t go in there to bother him.

Tucker starts Kindergarten next week. He will spend about 60% of his time in the special needs classroom, and about 40% of his time in the typical KG class. We will see how this all works out, Tucker has been wanting to go back to school ever since his last day of PreK, but of course KG is a whole new world, so hopefully he loves it too.

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 :)

EEG Results and Sickness Update

There is so much to blog about, including the big Fishing for Tucker tournament. Despite the rain, it was a huge success!! 96 boats entered the tournament, there were bands playing all afternoon, jambalaya and cokes being sold, the raffle tickets, a bake sale, face painting, and tons of people and donations!!


My cousin and uncle came in from Kentucky, and Tucker was so excited that “Jon Micah” was there with him, he went right to bossing him around, as if no time had passed since he last saw him. Molli loves him, too, but she calls him “Michael Jackson”….still haven’t figured that one out, haha. This year they added a Kids Fishing Derby, and lots of kids came out to fish in the Cabela’s pond. The kids loved it, and some of the fish they caught were huge.

You can friend “Fishing for Tucker” on facebook or go to fishingfortucker.com to learn more about the event. It is amazing that our family and the local community put this on to help us pay for Tucker’s medical and therapy expenses.

The tournament was Saturday, and then we left for Houston on Monday. If anyone is thinking: that was a horrible idea, well you are right! I don’t know why I didn’t foresee the scheduling as an issue. We schedule the appointments so far in advance that I just take whatever date they give me, then by the time I knew when the tournament was, it would have been very hard to move the appointments for two drs. Anyways….Mom, Tucker, and I were exhausted before we even began the trip.

So we left Monday afternoon, and of course as soon as we’re on the road Tucker was asking to see Morgan and Grace. We met them at Taco Bell for dinner in LC, they were so impressed to watch him eat applesauce by mouth! That was the first time that he ate for us that wasn’t at home or at school. He did great, even with the distractions all around him. He ended up eating very well for the whole trip-pudding and yogurt when we were away from the hotel room, and then sweet potatoes and beans when we were in the hotel room because we needed the microwave. He is doing great with the eating!

I scheduled the appointments very early in the day to reduce wait time (we usually wait on the drs at least 2 hours!), so we didn’t spend the night in LC. We said good-bye and headed on to Houston. I hadn’t made hotel reservations, as I knew there was a chance we’d give up and not be able to make the whole drive. So while I drove, mom was trying to make reservations on my IPhone, which was almost dead and therefore stuck to the very short charging cord. Well, my cup full of ice and water was open, and the phone fell into it! So there went my phone, luckily mom made the reservations first, we just weren’t sure how to find the hotel after that…… but anyways, we’d been there so many times that we found it very easily.

Tucker was of course thrilled to be at the hotel, so we got ready for bed and were asleep by 1130. The next morning we were up by 6 and we headed to see Dr. K at 745. The wait was very short (yay!) as we had an 830am appointment. We found out last week that Dr. K is expecting a baby, so we had to tell her congrats, of course. She looked so excited when she came in to see us, I thought she was excited because we told her congrats…..it turned out she had some pretty great news for us.

Now, at first this doesn’t sound good. We (as in Tucker’s parents, grandparents, caregivers, teachers, etc.) have known for a long time that Tucker’s sleep and his brain activity are not quite right. We have never actually seen him have a seizure, I don’t know anything about seizure meds or dealing with seizures…but we knew that proving that he had seizures would make sense. In 2008, Tucker’s lung dr in BR ordered a sleep study, and the sleep study showed abnormal brain activity. Because he is not a neurologist, he referred us to the BR neurologist, who ordered a 15 minute EEG, and then a 23 hour EEG. Both of these came back normal. Tucker continued to have abnormal sleep studies, but the neurologist said the EEG was normal, so that was the final word, not the sleep study.

Fast forward to 2011. Dr. K saw the sleep study results, and she ordered a 23 hour EEG in Houston. We went for this test in December, I posted about it a while ago. It takes 4 weeks to get results. So we timed it perfectly to go back to see Dr. K, although that was not on purpose.

Dr. K said that Tucker’s EEG was abnormal. He did not have any seizures for the 23 hours; however, he has epileptic activity, or spikes, or charges. The way she explained it to think of Tucker’s brain as a campfire that has been put out. You shouldn’t really have any sparks. For a regular person, every once in a while there will be a spark, and it shoots out and dies off. For Tucker, the sparks are often, and at night they are continuous. And with that, there is a risk that one or more of the sparks will fly off and start a forest fire. Luckily, as far as we know, that hasn’t happened. So then why did she seem so happy to be telling me this?? Because this type of brain activity is associated with language delay and autistic characteristics, and it has been treatable in other kids with a seizure med Lamictal. When the Lamictal works to control the brain waves, it also improves the language and behavior issues….wow!! This could be huge for Tucker.

So then I asked about his sleep-of course this brain activity makes him get poor sleep, correct? She explained that yes, it affects his sleep, so if the Lamictal works, he will get more productive sleep. This would literally change our lives. Tucker sleeps a lot…and on the weekends sometimes takes two naps. We have an almost 6 year old kid, but we schedule our lives like parents of a baby, never wanting to interrupt Tucker’s nap time or possible naps, or really even his bedtime because of the fear of him losing sleep. If we have an afternoon event scheduled, like a birthday party, I make sure Tucker sleeps late and takes a morning nap that day. Not exactly normal, but we are used to it. For Tucker to actually get 8-10 hours of sleep at night, and have that be all he needs?? I’m not sure Chris and I would know what to do with him, hahaha.

We will start the Lamictal next weekend at a small dose, then increase the does little by little for 8 weeks. Then he will repeat the 23 hour EEG to see if the meds are working. We will follow up with Dr K in June, since she is due in August. So that’s good for us, as August is a bad time for both Chris and me to take time off of work. As we were leaving, once again I showed my lack of scheduling abilities, by agreeing to an EEG date and return appointment that was right in the middle of the week when Matthew and Jon Michael are coming from Kentucky to visit. Oh yes, I’m sure Tucker would love to be in Houston while the boys are in Gonzales….. So mom pointed that out, and I went back and changed the appointments.

We got to visit with Missy (Samuel and Lauren’s mom) for a bit, as she now works in the clinic. I can’t say how great it is to see her, we enjoyed chatting with her for a bit, even though Tucker was bossing us “go to da hotel!” “get out!” the whole time. Tucker learned a huge skill on the Monday before the appointments, he learned to say NO, or “mo!” as he says it. And he is NOT afraid to use it! He told me no about 50 times a day on that trip, and I have only heard him tell Chris “mo!” once so far. After the appointment, we grabbed lunch at the hospital cafeteria, then we went to the hotel and took a 3 hour nap….seriously needed that!

That night we went to Olive Garden and Tucker licked all of the salad and breadsticks, and his own pepperoni pizza. He also demanded to see “Baby Kin” all through dinner, as if I had her hidden somewhere. I told him “we are in Texas, Kinley is in Louisiana”; he just stared at me.

We went back to the hotel, all had baths, and still went to bed early. The next morning we packed up and headed to see Dr. P at 815. We barely waited to see her, the early appointments are definitely a good idea. She came in with okay news. Tucker’s Feratin level is pretty low, this is a level that leads to Restless Leg Syndrome which Tucker has while asleep. She is going to discuss this with the sleep dr and hopefully treat it. So Tucker’s sleep should be improving soon. Tucker’s IgG levels are low, these are levels that show immunity. Last time they were checked (6 months before), his levels were normal, now they are on the lower end of normal. Dr. P said that as long as he isn’t sick often, she isn’t too worried about the numbers right now. Well, he isn’t sick that often, so we aren’t worried either. Dr. P had also checked Tucker’s blood 6 months earlier to see if his vaccines were effective. One of the vaccines that babies get, Prevnar, helps to fight against bacterial infections. Well Tucker had no immunity to that, because his vaccine did not work. So her suggestion was to give him the vaccine again, and then re-test his blood in 6 weeks to see if his body had the immune response for it. She asked us how Tucker has been doing in the last 6 months, and we said great. He had a few minor ear infections since his tubes fell out, but nothing big. I think he only missed one half-day of school so far due to illness, and that was a sinus infection. She asked us “anything else?” I said “well he is potty trained now.” Dr. P said that made her day! So mom mentioned that he eats by mouth. Dr. P and the social worker were obviously very impressed, so they had to hear all about ABA and how Tucker has changed over the past 6 months. Then the nurse came in and gave Tucker the vaccine, he was such a big kid about it. He was just happy about the band aid, he loves Band Aids! Santa Claus brought him some band aids in his stocking, they were all used up on fake “bo bos” by New Years.

We left the doctor’s office and headed home. We didn’t stop in LC as Aunt Kim was home sick and the girls were at school. We made pretty good time and got home before Chris came home from work. We did stop at Whole Foods on the way home, as Tucker was out of his Soy yogurt and pudding. I bought $50 worth…seriously…that way I don’t have to go back for a long time….and knowing that my son was going to eat every single bite made me not even care about the price. That evening was pretty low-key, as we were all very tired.

The next morning, I got up and got ready work. Chris started getting Tucker ready for school (Chris was off for two days), and he realized Tucker was very warm. Then Tucker really couldn’t put any weight on his leg that he got the shot in. His temperature was 101, and he never runs fever. Even when he has strep throat or an ear infection, his temperature doesn’t go up. So Tucker stayed home with Chris, and they both slept a lot. He still had ABA therapy with Amy in the afternoon, and he did great with that. On Friday morning, I got up and got ready for work, and Chris started getting Tucker’s medicine ready. I went in to wake Tucker up, and he yelled “light off! Blanket on!” I told him no, he had to go to school. He said “Mo! Stay home wit Daddy!” Well, excuse me! Luckily for him, that was an option, hahaha. We did take his temperature and make him try to walk a little, and he did not look good. Chris realized that we had been giving Tucker the Ibuprofen and Tylenol dosage for a 4 year old, and Tucker really needed an extra 2.5 ml to keep up with his weight. So once he figured that out, Tucker’s fever and pain were much better controlled. I did not realize that he had gotten big enough to increase the dose, good thing that Chris checks those kinds of things!

So I went to work again, leaving them home together. That day was a little better and more active, so by Saturday Tucker was bored.

By Sunday, Tucker had a cold and a scary sounding hacking cough. Chris went to the camp with his dad, and I pushed cold meds and pain meds all day. That afternoon Chris got home and took Tucker to the after hours doctor. They came home with meds for an ear infection and cough meds. I thought that maybe the ear infection and cough were related?? But unfortunately after 4 days of antibiotics, the cough is still very much there. It’s awful :( Tucker has coughing fits as long as he’s awake. He doesn’t have a fever or anything else, though, so he spent most of the week at school. He was especially excited on Tuesday when he got to bring his “vawentines” to school for his friends. On Thursday morning, the cough seemed to be much worse, and he asked to “stay home wit mama”. I called the pediatrician, and she suggested a different cough medicine. Because he had no other symptoms, she suggested I give him the new meds and watch him at home until Monday. So on Thursday Tucker watched about 8 straight hours of Mickey Mouse Clubhouse, and didn’t move around, but the only time he really had coughing relief was during his nap. We started the Delsym, along with Mucinex and the regular cold meds Thursday evening, and Tucker didn’t cough from 630pm up until 2am. Oh, and Chris lathered up Tucker’s chest with Vick’s vaporub about 5 times, and every time he woke up coughing, Chris woke up to put more on. At 2am I gave Tucker more night time cold meds, which put him back to sleep, so no more coughing until this morning.

I guess we’ll see how the weekend goes, I am hoping he has some relief soon. He is certainly a very good patient, no complaining or whining. If I was coughing like that, I would have had several meltdowns by now. Even with the hurt leg last week, he just hobbled around, no whining from him. He is such a sweet boy, thanks for checking in on us.

General Update

Tucker has been doing so well with eating lately that we are increasing his volume. Instead of eating just 2 ounces per meal, we moved up to 2.5 ounces per meal last week, then 3 ounces per meal this week, etc., until we get to 4 ounces per meal at Jennifer’s next visit. She will then introduce new foods, so he will start eating 2 ounces of 2 different foods at each meal. He is doing very well with the additional volume so far….except that I apparently don’t know the difference between 1 and 2! I like to prepare a big batch of food for Tucker at once, then measure it all out into his portions and freeze them. Well, I thought I had it all measured out into 2.5 ounce portions for the week, then this morning I realized he has 6 bowls of 1.5 ounces of sweet potatoes….This was easy to fix as I have a bunch of 1 ounce frozen sweet potato ice cubes, so I just added one ice cube to each bowl. I need to turn my brain on when I am packing up food next week!


As Tucker eats more, we obviously run out of food sooner. This means that I am blending and freezing at least one of his five foods every night. Plus I still blend his tube feeds once a week. I feel like my at home time has become a never-ending blending marathon, and in two weeks we add 5 more foods to the mix! One of Tucker’s 5 foods is Dad’s white beans. They are very flavorful, they are full of nutrition and calories, so they are a hit. We were out of beans, so I asked Dad for more. Well, he only knows how to cook one way-in a huge pot, making enough to feed a whole army of Tuckers. No kidding, he cooked on Monday, and I had a huge bowl of beans to blend up and put away. At just 2-4 ounces per serving, we now have at least a month’s worth in the freezer :)

I forgot to post about Tucker’s trip to the dentist, this was the day before Jennifer came. Tucker loves going anywhere, just as long as he gets out of the house ;) So the weekend before the dentist appointment, I had told him that he was going to the dentist that week, and the dentist would clean his teeth and count them. On that Saturday Tucker was so bored, despite all of the new Christmas toys and videos he has, so he was trying everything: “go to nana’s!” “ go to sissy and pops!” “go to Paw Paw Eds!” “go to da dentist!” I asked him, “really??? Now that is just pathetic!” hahaha

So on that next Thursday morning, he made it to the dentist. He was SO well behaved, and almost seemed happy to be there. I recently had my own dental check-up, and I admit that I hate it. I don’t like having someone else messing with my teeth. Well, Tucker was fine, he laid down and watched the hygienist’s every move; he even held her hand to “help” her. The dentist said his teeth look great, they took Xrays, and he had no cavities. The XRays kind of scared me, as his permanent teeth look huge…they are definitely going to be crowded in his little mouth and need some orthodontics to help that situation.

I am not usually sad about Tucker passing good milestones. I am not one of those moms who is sad that their child is growing up too quickly, as Tucker has always taken his own slow pace getting to each developmental level. Kids grow up, that is what they are supposed to do if we are lucky. Well, at the appointment the dentist mentioned how Tucker will be losing teeth soon and that is okay. I asked how that could possibly be ok?? He said that Tucker will be 6 in May, and that is the age kids start losing teeth. I just stared at him like he was crazy…surely, my baby is not old enough to lose his teeth?? He hasn’t even used them yet! Lol My mom came to pick Tucker up to bring him to school so that I could get to work. She laughed at me and told me that, yes, Tucker was old enough to lose his teeth when he turns 6. Well at least we have a few months until then!

Tucker loves Jason Aldean, who is a popular Country Music singer. Once of his favorite JA songs is “Johnny Cash.” This song sounds nothing like any Johnny Cash songs I have heard, it is just a fun song with a good beat. Well, Tucker also likes Adele, so mom plays the Adele CD in her car while they wait for the bus in the mornings. The other day, for the first time, Tucker said “take out Dell! Turn on Johnny Cash!” lol, Mom laughed so hard at him and of course obeyed. Now Johnny Cash is the only song playing in the mornings, Tucker even plays the drums on the dashboard like Uncle Chris….although I hope Uncle Chris has a little more rhythm!

We went last Saturday to visit my parents and to see Jessica. We couldn’t find Christmas bear at the moment, so Black Bear came along with us. Tucker had to put Black Bear for a “map” in Jessica’s bed, and every 5 minutes he had to check on him….as if he wasn’t going to listen to Tucker and he was going to sneak out of bed. At one point he said “Poppy, come with me!” Well, you don’t ignore that kind of request so dad went. Dad said they had to check on the bear, fix his blanket, then Tucker said “Beah is seepin’ he is so tiyad.” Absolute cuteness!! :)

Chris, Tucker, and I have been going through a bit of rough times lately, as Chris works 7 days a week, 10 hour days, with 1.5 hours of commuting each way. So Chris is gone for work before we wake up in the morning, and he gets home around 6 or 630 at night. We haven’t had much family time, and one thing about Tucker is that he likes his whole family together. The first weekend that Chris worked, Jennifer was with us for therapy, so we were busy. Then Chris was off (he works every other weekend), and that was nice. Last weekend, Tucker and I knocked many tasks off the to-do list, we were very productive. Tucker loves running errands and going to stores, as he gets prizes for behaving. Last Saturday he got Cheetos and Reese's, he was thrilled.

Sunday was a different story. He woke up at 6am asking to “go to chuch.” He loves mass, well, he loves the music at mass and getting to walk up the aisle when I go to Communion. He is fairly bored with the rest of it. When he was younger I just left him home so that I could go to mass, but he is almost 6, and we need to give him time to get used to the routine of mass. He knows that if he is good, he gets to go to Paw Paw Ed’s house after. Well this Sunday, he was good up until we all said the Our Father. Then he started demanding to go anywhere…..loudly…..”go to Paw Paw House!” “go ride in the truck!” (we had the truck bc Chris took my car to work) “its time to eat!” “go to the potty!” “go to the baby room!” He calls the “cry room” the baby room…it is a soundproof room with a big window. You can take your crying baby there and still see and hear the mass, then the hope is that they calm down and you can come back to the main church. I try to use it as a punish room, as in, if you are bad enough to go in the cry room, you are in big trouble. The problem is, Tucker loves babies and therefore the baby room. So it’s not really a punishment to be stuck in there :/

I couldn’t get him to stop yelling, so off we went to the baby room. When we got in there, I told him to calm down, and that his yelling meant he wasn’t riding home in the truck, but he had to ride home in Nana’s car. He was SO angry, he started kicking and screaming and threw himself on the ground….he was being much louder than any actual babies! The remaining 10 minutes of mass was horrible….all I wanted to do was pick him up and run out of there, but there are two problems with that: 1. He is now huge, and I am not actually able to pick him up and/or physically force him to do much… and 2. That would have given him EXACTLY what he wanted…to get out of church. I would have been reinforcing the bad behavior by giving him what he wanted in the first place. So I tried to do what we usually do, which is let the fit play out until he got over it….pretty embarrassing!!

Right when mass ended, I took him into the bathroom instead of fighting the crowd to get outside. I told him I was so angry, and that he was too big to act like that. When we got outside, Mom and Gina had already left….I forgot to tell them about Tucker’s punishment….so he thought he got to ride in the truck. I called Gina, and asked them to please come back and get Tucker. They drove up to us, and I put Tucker in his carseat in their car. His face fell, he was so sad. I told him that I’d ride in the truck, and I’d meet him at our house in a minute. Well, in the short ride from the church to our house Tucker kicked and screamed and broke the cupholder in the car :/

Once we were home he was in a better mood. I told him if he calmed down he could ride in the truck and go to Paw Paw Ed’s house. He straightened up and we enjoyed a visit at Paw Paw and Maw Maw’s. Tucker played while the adults visited, then Gina and I took him outside to swing and listen to her IPod. He was so very happy, complete opposite of that morning.

In two days, we will have the Second Annual Fishing for Tucker Bass Fishing Tournament. You can check out fishingfortucker.com for details. Last year was amazing, and this year our family and the local community are making it bigger and better. Raffle tickets for several great items ($500 Visa gift card, 42” TV, $1000 to Wall Décor and More, Kindle Ereader, and 2 custom made wooden ice chests-one LSU and one Saints) are available, and the tickets have been selling like crazy. There will be jambalaya, baked goods, t-shirts, coozies, cokes, and beer for sale. There will be bands playing from 10am-2pm, then the weigh-in and all of the door prizes start at 3. A local advertising company designed and donated 5 billboards, so Tucker’s face is all over town, just like last year. We are amazed at how far Tucker has come since last year’s tournament, and that is because of how much the fundraiser was able to help with Tucker’s care and services. We are so blessed!!

"It's Time to Eat!"

“Even though the journey's long, and I know the road is hard

Well, the One who's gone before me, He will help me carry on

After all that I've been through, now I realize the truth

That I must go through the valley, to stand upon the mountain of God”

Tucker's feeding journey has been just like the song...long and hard....for years I wanted to give it up, as Tucker had no interest in eating. Over the past few years, he loves to lick food, but that is as far as we got for so long. That is one of his most obvious differences from other kids. At birthday parties or school parties, weddings and family gatherings, he has no interest in the food, no interest in sitting with the other kids while they eat; he has no interest in sitting with the family for Sunday dinner or holiday dinners. Our hope has always been that he would at least like to eat socially, as so much of our daily lives revolve around food.
For those of you who don’t follow us on facebook, the past week has been huge for Tucker and his feeding journey….huge for us all. I have cried A LOT of happy tears, tears of shock…. We spent the last 5 years trying to get Tucker to eat by mouth; we have made progress, but not enough to get him to swallow even one bite of food. For the MLK weekend, we had an ABA feeding specialist fly in from Pennsylvania. She spent 5 days with Tucker (4 at home and one at school with him Tuesday after the break). He is now eating 2 ounces of food at a time, he eats very pureed versions of sweet potatoes, white beans, and applesauce. He also eats soy pudding and soy yogurt out of the cup.

It is called intense feeding therapy, and it certainly was intense! Tucker came to the table for meals 13-16 times per day. He got a lot of reinforcement in between meals (he usually had 30 minutes in between meals), so that helped to keep him excited about eating.

Tucker has 8-10 hours of ABA therapy per week, they work using a Verbal Behavior Approach, meaning that all of the tasks and work are focused on acquiring language. All of the skills they work on are real-life things that Tucker needs, such as being able to recognize and express emotions, being able to wait for things he wants, transition from one activity to another, etc. The ABA plan is what got him potty trained in 3 days, once we all knew he was ready. So over labor day he was potty trained in 3 days. Over MLK weekend it wasn’t quite as simple as getting him to eat in 4 days ;)

Jennifer flew in on Thursday night and stayed in a hotel. She arrived at our house for 8am on Friday. Tucker was off of school, and I took the day off from work. Chris is working 7 days a week for a turnaround, so Mom joined us at home. Jennifer and I had talked for over an hour earlier that week and had emailed back and forth. The trick is finding reinforcement that works for each kid. So she knew that he liked lamps, and he really likes visual reinforcement; for example, each time he does a task, he gets to put a Velcro token on the board. Then once there are so many tokens, he gets a bigger prize. On Friday morning Jennifer showed up with a token board, where the tokens were little lamps! She had printed out pics of a bunch of lamps, had them laminated, then cut them to make little tokens. She greeted Tucker then told him they would sit down and watch a video. If he’d work hard to eat, he’d get a lamp for every bite. He was pretty excited, except for the eating part! 

The problem that we have had with Tucker for years is that he is a professional at spitting out food. There are so many therapy tricks that work with other kids. You use special spoons, turn the spoon sideways, turn the spoon upside down, put the food at the back of his tongue so that he has no choice but to swallow, just feed cold food because that facilitates the swallow….etc, etc, etc, none of those tricks work for Tucker. He has shown us that he was going to eat when he was good and ready, if ever.
Jennifer tried the spoon on the first few bites, and then she took out the Nuk brush. This is just a regular little tool, it looks kind of like a tooth brush. She put food on it, then deposited it on his tongue. To start out, he had to get three bites, which would get him 3 lamps, then he got whatever he wanted, which 99% of the time was to go outside for 30 minutes. He also got to watch Mickey Mouse, Barney, or Kipper after each bite, so there was so much reinforcement going on. Jennifer had to hold Tucker’s chin and put her hand behind his head to prevent him from raring back to get away from her. After about 3 feedings, and some ugly bites, I think he just kind of gave in and realized that swallowing the food was going to make his life SO much easier, as Ms. Jennifer was not leaving! As Tucker went outside with Nana, Ms. Jennifer told me that she had Tucker figured out, it was going to be easy from now on. This was around 1030 am, I thought that surely she couldn’t have cracked Tucker already.

Well, she kind of had! Keep in mind that all day on Friday he only ate chocolate pudding. So you wouldn’t think it would be so hard to get a kid to eat chocolate pudding, but this is Tucker, after all. By Friday evening when Chris got home, Tucker had gone from eating 3 bites, to 5 bites, to 10 bites, to 20 bites, to one ounce of chocolate pudding!! We were all in shock. On Saturday, Jennifer came back (Tucker was confused, I’m sure!) and introduced mango yogurt. Tucker loves tart tasting food, and she got him from the 3 bites up to one ounce in 3 feedings. Then we moved onto applesauce, sweet potatoes, white beans, and pureed mac and cheese over the next two days. The mac and cheese still had little pieces no matter how much it was blended, so Jennifer ended up scrapping that food, as Tucker gagged after every bite. 

On Sunday she tried to go back to the spoon, as everyone’s lives would be much easier if Tucker ate off of a spoon instead of a Nuk brush. That was rough, as well. It was like Tucker had just gotten used to the Nuk brush, and he had to learn how to move his lips around the spoon. It was hard but Ms. Jennifer showed Tucker (again) that he could do it if he just wanted to, and by lunchtime that day he was eating off of a spoon!

That day was hard, but also funny, because during his 30 minute breaks, Tucker demanded to “go to Paw Paw house!” so we went to Paw Paw Ed’s house 3 times in about 2 hours. As soon as he’d get comfortable, it was time to go home again. He would hurry up and eat his bites at home so that he could get back to Paw Paw’s. We also took a trip to the local store to get a large bag of the little chip bags, so he was so excited. Then on Monday we went to BK to get him a kids burger and to Wal Mart to get a Snicker’s bar (just to lick, of course).

Monday, which was Training Day, was even harder. Tucker compartmentalizes people and places. Meaning: mommy can rock me, daddy can drive me in the truck, Ms. Jennifer can feed me, The End. Well, on Monday, Ms. Jennifer transferred the feeding over to me first (I had to feed him 3 times to be considered trained), then Ms. Amy his BCBA therapist, then to mom. So he had his whole system going with Ms. Jennifer, and we all had to sit in and learn with him. This also meant that he ate more frequent meals with smaller portions so that we each had a chance to feed him. And it was Ms. Jennifer’s last day at our house, so we talked to her more often instead of taking him outside. You can imagine how Tucker reacted to that!

By Monday night, Tucker was eating better than I could have imagined, but the fear was starting to set in: How on earth were we going to pull this off once Jennifer wasn’t here for 8 hours a day???? My first test was Tuesday morning, when I had to get myself ready for work, get Tucker ready for school, and get 2 ounces of applesauce into Tucker’s tummy, via his mouth. Jennifer gave us a guideline of 20 minutes for meals. I got the food ready (I have to add 1 tsp of safflower oil to it to add 40 calories and make it smooth), got the Mickey Mouse video on, and called Tucker to the table. He hesitated for about one second, then he realized I was serious….and he ate the 2 ounces in 9 minutes!! Once he was done, he said “go to school!” the poor kid was so excited to get out of the house and go back to his regular life.

Jennifer went to school about 30 minutes after the day started; she said Tucker gave her the pop-eyed look. We know that look well, haha, it is his “what the heck are you doing here?” look. We told Tucker that Ms. Jennifer was going to school so that his teachers can feed him, but I guess he thought we were kidding. His teacher Mrs. Amy did a great job feeding him as well; everyone at school is SO excited that he is eating, and as usual, his teacher is going above and beyond to help Tucker with whatever we ask.

That afternoon Jennifer went to our house after Tucker got off the bus to finish training mom and also work with Amy the BCBA, because Amy will need to train the therapists who work with Tucker after school. (Once Jennifer trained us, we could then train other people. I have already started training Chris, he is doing a great job.)

She finalized Tucker’s feeding plan and protocol, and together we removed 13 ounces of Tucker’s tube feeds per day!! This is amazing, incredible, unbelievable….I can’t even explain what a big deal this is. Tucker now eats 5 small meals per day, and it has been going very well. It is challenging for me to keep up with blending his regular tube feeds and also keeping up with his blended oral food. (Chris is working 10 hour days plus 1.5 hour commutes both ways, so he can’t help right now. The short amount of time that he is home, he spends with Tucker, since Daddy time is Tucker’s reward for eating his dinner.) I am still getting the hang of everything. I think that having a free weekend will help me to catch up with everything over the next few days.

Jennifer will be back over the Mardi Gras break (poor Tucker never gets a vacation!) to add 5 more foods, and to work with drinking from a cup. She will also come back at the end of May, not sure what we will work on then. In another of many miracles in Tucker’s care, Jennifer will be cutting her travel time down in June, and then again in September (she travels a lot right now), so we found her just in time!

Once Chris has a free couple of days, we think we are going to take Tucker to a local hotel “hotayal” for a night as his reward for working so hard and being his amazing self. Jennifer said the hotel she was at had an indoor pool, so we need to schedule a night there.

This weekend is Kinley’s First Birthday party, we are very excited to be celebrating with her Tucker has been practicing singing “Happy Birthday” to her, he finally says “to Baby Kinley” instead of “to Tucker” for the name in the song, thank goodness. He loves his cousin so much, as long as his daddy isn’t holding her!!

EEG in Houston

Tucker had an EEG (test to see if he has seizures) scheduled for Dec 27-28. The test takes 23 hours, and he had to be hooked up to many leads for the test.  His mito dr ordered it, so we went to Houston for the test.

On the day after Christmas, Mom, Gina, her best friend, Jene'e, and I left for LC.  Our plan was to spend the evening and night with the Poche's, then leave for Houston early on the 27th. Well, we didn't get on the road until about 630pm ;) so from about 2pm until 930 when we got to their house, all we heard was "Go to Aunt Kim's! Go to Unca David's! Go see Mogan and Gace!!!" over and over.... :/  Then by the time we got there Tucker definitely needed to go to sleep, so I felt awful.  We stopped for dinner on the way, and Tucker got his own kid-sized burger and fries. He still doesn't eat any of it, but his feelings get hurt if he doesn't have his own food. He took my ranch dressing and dipped his fries in it, then licked the ranch sauce off....yes, he is a Townsend! haha

We stopped once more to use the potty, even though Tucker just wanted to drive straight to LC. I told him I was going to be mad if he pee peed in his carseat!

Tucker had about 15 minutes with his cousins, then it was time for him to go to bed. Mom, Gina, and Jene'e stayed up with the girls watching Soul Surfer while we went to sleep....well, after about 30 minutes of Tucker trying to sneak out of the bed to go see Unca David! lol

The next morning we woke up, rushed out by 730, even though we needed to leave for 7. Our trip to Houston was quick and painless, as Tucker, Gina, and Jene'e slept most of the way. When the city skyline came into view, the girls were so excited! It is obvious that we live out in the country, they loved every building and park.  They had to take pictures of themselves next to every neat looking window, door, etc. Having them along made us more excited to be there, as they found everything to be so interesting. The hospital really is in a nice part of town, right next to a big park, so I totally understand why they like it.

We checked in at admissions, then within 10 minutes we were up at the EMU (Epilepsy Monitoring Unit). The admissions clerk asked if we needed a guide, I told her we could handle it. (haha) So when we got up to the EMU, there wasn't anyone waiting for us. We found the room he was in, and we just sat around for a while. There was a twin bed for Tucker, an arm chair that folded out to a small bed, and a couch that folded out into a bed. So there was plenty of room for all of us, luckily. I went to find a nurse, and I also found a big playroom. The nurse came in to take Tucker's vitals and I went to the playroom to pick out a few trucks for Tucker. Gina also picked out Guess Who and Life for them to play.

The tech came in to put the leads on Tucker's head. There were about 40 sticky leads that needed to be attached to Tucker's head and face to monitor his brain wave activity.  It took the tech more than 30 minutes to attach them all, and Tucker behaved perfectly while this was done.....I was in awe.  Mom and I had to sing "night night, Teddy Bear" about 100 times, but that was expected!  Tucker is extremely tender headed (he cries in the morning when I brush his hair, even with soft brush), and he likes to rub his hair when he is stressed out. Of course this was not an option as the leads were on his head, so I lay next to him and he rubbed my hair instead. After the leads were on, the tech wrapped Tucker's head with several gauze-like towels, then wrapped his chin as well. He looked like a Sock Monkey, Rapunzel (he had a long gauze ponytail), and a nun.  So we of course made fun of him for the next 23 hours ;)

The leads were long enough that Tucker could go to the bathroom, and move between the couch, bed, and rocking chair. But he couldn't leave the room.  The rest of us could leave, of course, and we took turn leaving when it was time to eat. Tucker caught on to this quickly, and he started going to the door saying "it's time to eat" trying to get his turn to leave!  We checked in around 1030am, and by 1pm it was time for Tucker's nap. Mom took the teenagers to go stretch their legs and get lunch (they ended up at Smashburger-yum!), while I settled in to rock Tucker and eat my complimentary hospital lunch.  I am so proud of mom! She drove around Houston without me, haha. It was only a few streets over, but still, she hadn't done that before.  Jene'e doesn't usually eat hamburgers, but she loved Smashburger (so does everyone).   Tucker took a good nap, after asking me about 2343098430 times "they comin' back?" "they go to Aunt Kim's?" Poor kid thought they had dropped us off and went back to LC! 

They came back around 3, and we just spent a lazy afternoon together, reading and playing board games. Tucker loved being in the middle of Jene'e and Gina's games, taking all of the pieces from them! Around 5, I decided to take a break, so I took the girls out to get dinner and to unpack at the nearby hotel.  That way when mom and the girls left the hospital at 9pm they wouldn't have to bring in all their luggage in the dark. So anyways, G and J loved the room, they were just sad that Tucker couldn't stay too (staying over at hotels is one of his favorite things). We went and picked up dinner, then headed back to the hospital. That hospital is truly a maze, and it was pretty scary in the dark. So I thought I had a good solution when I parked in the hospital parking garage instead of the physician's tower garage. We parked there, and we brought the food in to Tucker's room. He and Nana had a good time rocking while we were gone, and Tucker was so excited to have his own little pizza to lick while we ate pasta and breadsticks.  The night nurse came in to check Tucker's vitals, and he was more than eager to help out. He held out his arm and held the thermometer for his temperature, then he held out his arm for the blood pressure monitor (he usually fights us on this), and he put the pulse ox monitor right on his toe, then stared at the screen, like he was going to interpret the numbers for the nurse. When she was done and ready to leave, he wouldn't let her! So she left the pulse ox with us for about 5 more minutes before she finally had to take it.

Mom, Gina, and Jene'e left at 9pm. Of course my great plan was not so great, so about 5 minutes later they called me because they were lost in the hospital.  They ended up finding a doctor that told them how to get out, then they made it to the hotel and were ok. They didn't come back until 11am the next morning, which was fine, because Tucker pretty much slept from 9pm that night until 10am the next day.  I packed everything up, and at 10am the tech came back to take all of the leads off. It was pretty painful. He had to use acetone to get the sticky stuff to come off, which Tucker did not like. Then even after the leads were off, most of the glue was still there, so I had to put him in the shower and scrub his head. Even after that, he looked like he had the worst case of dandruff ever! But I knew at that point I couldn't push it, so I just left him like that.

We had plans to meet another family, the Pohlas, at the Houston Children's Museum at 1 (a friend of mine Casey had sent me free passes, and the Houston museum is rated #1 in the US).  So we packed all of our luggage and went to find some lunch. Tucker was so happy to be out of the hospital, even though he was just there for less than a day. He wanted pizza again, and the only pizza place we could find was a carry-out only place. So we ordered a large pizza and walked across the street to a small park. It was so nice to eat outdoors and enjoy the scenery after being inside for 24 hours. The weather really was perfect.  We went to the museum for 1, and it looked like everyone else in Houston had the same ideas as us.  We met up with Pohlas, and it was nice to see them and their 3 boys. It was very crowded in the museum, so we all lost touch with eachother a lot, but Tucker loved it. There was this huge climbing apparatus, but Tucker was too scared to go in there with the bigger kids. We found an area that was set up like a kids' town, it had a grocery store, restaurant, news studio, and also a police department. Tucker spent the rest of his time going from the police car to the ambulance. He loved it, and even Christmas bear got to drive the ambulance.  G and J went around the whole museum and I hope learned a lot from the different exhibits. Jene'e actually told me at one point "Leigh, you are the coolest mom ever" since I took the time to bring them to the museum. That made me so happy, because most of the time I don't feel very cool! hahaha

After about an hour of being in the crowded museum, Tucker had enough and I was sensing a huge meltdown coming. So we said our good-byes and got in the car, headed back to LC for a longer stay.  We met Aunt Kim and the girls at their local McD's which was just remodeled to put in a huge playplace. Tucker loved it. He was very unsure of the steps at first, so Grace and Morgan went up with him once, and that was all that it took. He was going up and down, over and over, even when the bigger kids went up the steps and couldn't find their way back out.

When we got their house, we stayed up for a while before going to bed. Tucker got to see Uncle David for a little while before bed, so he was happy. I got to talk to Morgan for a while, the girls are getting too old! The next morning we slept in and took our time getting ready to leave.  Well, everyone except Tucker, of course. He woke up early and went to all of the girls saying "get up! get up! play wit me!" This started a fight between him and G:
Tucker: "get up!"
Gina: "no, you get out!"
Tucker: "no, you get up!"
and this went on.....hahaha

Of course, as soon as everyone gave in and woke up, Tucker was ready for a "map". He slept for about an hour while we all waited for him to wake up so we could finally play.

At some point I decided that Tucker's dandruff look was really too much. So I sat him down in the bathroom to brush the glue out of his hair. I knew it would be painful, but that stuff had to come out! Grace came in, gave Tucker his bear, and held his hand while I brushed his hair. It was so incrediblly sweet, and Tucker sat through the whole thing.  With Tucker looking much better, the kids played outside for about an hour before we left at lunchtime. We were sad to leave them, as always, but we will see them soon.

We should get the results from the EEG in the next few weeks. Tucker's last EEG was run over 3 years ago, and that one came back normal. Tucker sometimes has staring spells, and the dr. wants to make sure he is ok.

When I got home and told Chris all about the trip, he said "Wow, that sounds like pure hell." Hahahaha, and I thought it was the most fun I'd had in a while! I guess I don't get out much ;)  No housework, cooking, running errands, or going to work for a few days? Sounds great, right?
Having the teenagers and mom along with us for this trip made it really feel like more of a vacation than a medical trip, even though poor Tucker didn't to "go to da hotayal!" Maybe next time!

Christmas 2011

Christmas 2011 has come and gone, and it was a very Merry Christmas for our family!

Tucker got so many gifts from family and friends that he got tired of opening them, haha! Santa stuck to the 3 present rule (my mom had that for us, we got the same number of gifts as Jesus got, though not the same ones, haha). Those presents were well-received, as they were a big kid Spiderman bike, a talking moving firetruck, and a new IPod Touch for all of Tucker's music, games, and pictures. Chris and I have finally learned how to text on it so that hopefully we will soon transfer all of our photos and videos to his IPod for his amusement. As of now, when I walk in the door he demands "phone!" then he takes my phone, and scrolls through the photos until he finds whichever one he wants that day. Lately it is the picture I took of him with Grace, Morgan, Gina and Jene'e at the Poche's last week. He loves it!

He got all kinds of other great toys and gifts, but more importantly, we were all well and together on Christmas day instead of stuck in the After Hours clinic with strep throat like last year. Last Christmas we actually got take-out Chinese food for lunch, it was pathetic! This year Chris got a stomach bug two days before Christmas, just in time to leave all of the last minute wrapping and errands to me ;) So Tucker and I made ourselves scarce so that Chris could rest. We had fun visiting with Lacy and Josh and Gina; we also took Gina to breakfast one day, and Tucker was very upset when the eggs we ordered showed up on his plate already cracked and cooked! 

A few weeks before Christmas, Tucker decided that a little bear with a Santa hat was his new best friend. He calls him "Chri-mas bear" or "santa bear" depending on his mood. Well, Christmas bear is Tucker's imaginary friend, or imaginary baby, we can't decide. He puts Christmas bear into all of Kinley's seats, like her high chair and walker. He also makes Christmas bear have his own couch cushion, so if you think you can move Christmas bear out of the way so that you can sit down, you are wrong! One time I put Christmas bear into his own seatbelt next to Tucker's carseat, and he was so excited. So now Christmas bear always has to be buckled up, that was a mistake starting that. Christmas bear goes everywhere that Tucker goes, so for example, when I say "let's go to Sissy and Pops", he says "Chri-mas bear come wit us!" haha

We spent a lot of time with family over the break; I was off of work for 11 days, and it was so nice. Of course we spent a good bit of that time in doctor's offices, we wouldn't be us otherwise. On December 20, Grace and Morgan came with us to New Orleans for two appointments. Tucker was ecstatic to have his cousins riding with him all the way to Nola and back, although he was upset that Christmas bear didn't get his own seat.  The girls each wanted to push Tucker in his stroller, take turns feeding him his tube feeds, really anything they could do to play with Tucker and/or help him. The ENT said that Tucker's ear tubes both fell out, so now we are watching him closely to see if he will need replacement tubes or if he has maybe outgrown the need for them. Tucker put Christmas Bear in the patient seat, and asked the doctor "check Bea's ears" she said no she had to check Tucker's ears! He is such a mess ;)

On the same day as the dr. appointments, it was Grace's 9th birthday, so after the first appointment (ENT) we took the girls to the mall and had pizza for lunch. I took Morgan and Tucker to the Pottery Barn Kids store, where Morgan fell in love with the Star Wars bedding, and Tucker fell in love with the beds and lamps. He is like Goldilocks, trying every bed to see which one was just right, even though there were tons of toys. Our second appointment was a bust, as we got there 5 minutes late, got checked in, then were left in a hallway and the waiting area for 30 minutes, then told that we were 40 minutes late and the dr. couldn't see us! Seriously, we were so angry.

The girls were so good, though, and they were happy to be heading home a little early. We stopped at McD's on the way home for ice cream, then we bee-bopped the whole way home to Bruno Mars, Justin Bieber, and Maroon 5. Christmas Bear also got into the spirit, Tucker made him dance, it was adorable.

The day after Christmas we left for Lake Charles, then onto Houston for Tucker's EEG. I'll post about that in the next few days (hopefully!).