Good-Bye (then Welcome Back!) to Tucker's Feeding Button

We decided a few weeks ago that after over 7 years of Tucker having a g-tube in his tummy, it was time for it to come out. This tube had provided Tucker with nutrition for years, but lately it was just a nuisance as he takes all of his food and medicines by mouth. He scratches at it often, and baby brother tries to rip it out when he gets close enough. I put it off for a long time, as really he should have probably got it out last summer. I called the pediatrician’s office and the surgeon’s office, and we set the date for the simple in-office “procedure” of taking the button out.

So I suppose my Mommy heart knew the g-tube removal would not go smoothly. After all, this is my child we're talking about, right?

In 90% of cases, the tube is removed in the office, and it closes on its own within one hour. So on Monday morning, we got Tucker dressed in his school uniform, I took him to the doctor, he got the button out, then I brought him to school. I worked at home in case the teacher called. Well, two hours later, she called, saying that the chocolate milk he drank came out all over his shirt and shorts. He was soaked. They have extra clothes for him, but really why would they keep him at school if he can't eat or drink?

So I picked him up and brought him home. I called the nurse, she said the soonest the dr would see him was Thursday morning, as him leaking was still very normal at this point. So by Monday night it was no better, even though I made him lay on the couch most of the day so that it wouldn't drain out. On Tuesday Chris stayed home with him and he barely got any liquids. So basically he ate goldfish, cheetos, and pizza all day while watching Thomas the Train on Netflix! LOL what a life!

He still had in-home therapy starting at 3, so he at least had some distraction. On Wednesday I called to make the Thursday appointment, and my mom kept him for the afternoon so that I could go to work. He continued to leak. We had a ton of gauze on his tummy, we tried using clothespins to hold beach towels wrapped around him, and at one point I taped one of Easton's diapers to him! Nothing held in the milk, but the poor kid was thirsty, so he mainly laid down from Monday until Thursday eating food and having anything liquidy come right back out. We laughed about it, calling it "Tucker's diet plan." Well, on Wednesday night we weighed him, he lost 2 pounds in 3 days...that is when I stopped laughing.

So on Thursday morning we went for what I thought was an appointment to cauterize the wound. This was supposed to help it close up. So on the way to the appointment, I started to wonder how this would actually work? If the doctor closed up the skin wound, but the hole in his stomach was open, that really wouldn't solve the problem. Waiting in the dr office was a comedy of errors. Tucker kept trying to get up out of the chair, and I kept saying "stop, you're going to leak everywhere!" The other parents must have thought I was crazy. Then he got his foot stuck in his stroller and I could not get it out. Then I had my water bottle in my purse and it spilled everywhere. So I was already frazzled before the appointment even started.

I mentioned my concern about the stomach not closing up to the doctor. He told me I had misunderstood, he would not cauterize the wound if the stomach wasn't closed. I said great, lets get the surgery set up to get this closed. He said "sure, but we have to put a tube back in to prevent leaking until surgery." So basically the last four days had been for nothing. :/

The tube was leaking a lot, but it had actually started healing; this was evident when the dr put a new button in. They numbed it with emla cream, and the nurse and I held his hands while the surgeon used a dilator to open the stoma enough to put a new button in. Tucker shook and had the goosebumps, I cried. That was too much for me, I was not expecting it. I really think we do a good job of explaining procedures to Tucker and letting him know what to expect. I don't lie to him; if I'm taking him to the dr for a shot, I tell him that he'll get a shot, it's going to hurt, but it will be over soon. I did not prepare him for this at all.

So five minutes later, he was fine and asking to go to the toystore. We went downstairs and spent about an hour getting him pre-registered for his surgery next week. It has been four years since he has had surgery. Geez, how the time has flown! We have been so blessed, really, that I have forgotten the whole pre-op, post-op procedures that used to be second nature to me. He will have outpatient surgery this Thursday, he will be tired and maybe in pain for Good Friday, then he'll be fine for Easter weekend. Easter really is his favorite holiday, so it may seem like an odd time to get this done; I just want it behind us, and the two week no-swimming recovery period behind us before the hot Louisiana summer hits. 

Thanks for all of the prayers and support! Tucker is a trooper and has done very well throughout this craziness. His parents, on the other hand, we are too old for this. 

2014 Goals, Six weeks in

I set quite a few goals for us in 2014, and so far we’re doing pretty well.

One of my goals is to read the whole Bible, and with the youversion.com daily Bible plan, it’s going well. Of course, it started with Genesis and Exodus, which are very interesting books. I suppose that once I get to Leviticus it won’t be as much of a page turner…

Another goal was to post to the blog weekly, well, that hasn’t quite happened. J

I decided on December 30 that Easton, Chris, and I would start a more healthy lifestyle. Tucker already eats very healthy food, but I have starting making his better, too.

My goal was to eliminate chemicals from our home and slowly add more healthy and whole foods to our diets, especially organic and unprocessed foods. I usually go all out with a goal for a week or two, then get burnt out and give up. So this time I thought we’d try things slowly, adding one or two recipes per month and slowly eliminating processed foods.

Well, slow and steady is not me, lol, so in our first month, we have made a ton of changes! Poor Chris just wants his bread and cereal back, and Easton really wants his crackers and cheerio diet restored.

Easton has been eating lots of fruits with little fuss, the veggies are much harder. Tucker didn’t notice a difference by switching to organic sweet potatoes, avocados, and bananas (all of which he eats on an almost daily basis) so that is good.  I traded my morning coffee for green smoothies, which is easy and tasty, plus I get two servings of veggies in before 9am.  If only I could get the kids or the hubs to drink them…

We all need snacks, so I’ve made a few cookies, cupcakes, and energy bites with natural ingredients and extra protein so that we have lots of good choices made with real ingredients. We’ve also tried baked zucchini, roasted zucchini, spaghetti squash, and cauliflower rice.

Did I mention that I hate to cook, and I’m not very good at it? I am known among family and friends for burning pop tarts and being confused on instructions for boxed macaroni…so this is completely out of my comfort zone.

Easton’s eczema is much better, and his mood is much improved, so that gives me the motivation to keep going. He has also had a growth spurt recently, so it helps to know that all of the healthy food is doing something! 

I found a wonderful website wellnessmama.com that has lots of natural recipes.

As far as using natural products, I make home made laundry detergent that is cheaper, and that works very well. I also make home made baby wipes which we really like and I have mopped the floors with vinegar and water instead of chemical cleaners. I was pleasantly surprised that it worked very well. This month I need to order a few supplies, then I’ll try the lotion bars for Easton’s skin as well as the natural all purpose cleaner to disinfect and clean surfaces in the house.

Tonight I made home made chicken taquitos, as we love the frozen ones from Wal Mart. And I have no idea how many calories or crazy ingredients are in the store bought ones. But the home made ones were delicious so we’re going to keep those in rotation.

Well, this wasn’t the most exciting post, but I wanted to document this change to healthy living. We are hoping it stays, and that we’re not back to Oreos and frozen pizzas by March. ;)

Ear Infections all Around

Well my plan for blogging once a week is already falling behind! So here is update #2 for 2014, just 2 days late.

I need to update the design and maybe even the title of this blog, as Tucker is not the only story anymore.  There is still so much going on with him, of course, and so many emotions that come along with parenting him each and every day. But to say that Easton demands at least equal attention is an understatement. Easton is completely adorable, and that is his saving grace. J Because he is quite a boss! Since he was about six months old and was able to sit up and watch Tucker, he has thought that he should be able to do everything Tucker does. I say often that Easton thinks he’s 7. He screams when Tucker goes outside without him, when Tucker goes into the therapy room without him, gets on the schoolbus without him…the list goes on and on.

I think this is why Easton fights the carseat and the highchair booster so much. Because Tucker has a carseat booster and sits in a chair to eat, and Easton is not ok that he has to do something different.  Thankfully he has no problem sleeping in his crib, but of course Tucker has to be in his big bed in the same room where Easton can see him.

His favorite word is “nine” meaning mine. He claims everything as his, and Tucker rarely fights back. I am waiting for the day when Tucker fights back and pops Easton in the face, lol. 

This morning right at midnight Chris got called into work. This is not at all a normal occurrence, and I thought he’d be back a few hours later My alarm went off at 510am, and in true Leigh spirit, I hit the snooze button and woke up exactly 2 hours later.  Chris gets me out of bed every morning, the boys and I are not morning people on weekdays.  I quickly realized that Chris was still at work, and that I’d have to tackle the morning-hating boys on my own. Easton’s first order of business was to claim Tucker’s feeding chair and milk cup as his own, and there was no fighting with him and hoping to get out of the door in time. So Easton sat in the therapy chair and drank 8oz of Tucker’s glucose control boost, along with eating Tucker’s banana…

Now if you know Tucker at all, he has no problem with this. He’d eat only Cheetos if it was up to him, and Easton could have everything else. So then I had to get more bananas and a new cup for Tucker.

On Dec 29 we went with Easton to the pediatrician for his checkup, This doctor has been Tucker’s pediatrician since he left the NICU. She told me that Easton’s ears were infected, which wasn’t a huge surprise since Easton had been acting so mean. That is Easton’s only symptom when he’s sick-a grumpy attitude. So this was Easton’s 3^rd ear infection since October, 4^th since August (I think-I really have lost count). His eczema looked terrible also, I told her that is how it always looks. She suggested that he go off of milk completely, so we did starting that day. We all got used to almond milk quickly.

Easton is a 100% junk food junkie. He would drink milk from his cup and eat junk all day long. He will refuse any food and you think he’s starving, and he will somehow survive on an Oreo crumb he digs out from under the couch and then refuse dinner also.  Tucker eats a very healthy diet. He eats bananas, yogurt and low sugar applesauce daily, has hummus, sweet potatoes, avocado, squash, potato soup, chicken pot pie (all pureed) as staples in his diet, along with his Boost glucose control. For several months Easton would just eat whatever was in Tucker’s bowl, but then he realized there is junk in the pantry.  He’d cry and point to the pantry during the entire meal.  So the next weekend Chris took Tucker to the camp, and the pantry was off limits for Easton the whole weekend. By Saturday, he was eating grapes, scrambled eggs, and squash. I also made homemade oatmeal cookies with no added sugar. I put a banana and applesauce to sweeten them naturally, but they definitely don’t taste very cookie-like…after a few days Easton was asking for them instead of junk.  (and yes we will always keep some junk food in the house, because Tucker will do amazing academic and social tasks if a Cheeto or pink frosted animal cracker is offered!!). we also switched from Dr. Bronner’s peppermint soap to the Dr. Bronner’s baby soap. Within a few days, Easton’s eczema was gone, and Easton was in a MUCH better mood.

Now I’m not just forcing Easton to eat healthy and then shoveling down the pizza myself. ;) I started making green smoothies, with 2 cups of spinach in them each morning. They are delicious! And replace my coffee addiction, although I do occasionally get a CCs fix in the afternoon at work.

On Monday afternoon Easton came home from daycare with a runny nose and an awful temperament. So I brought E & T to the doctor the next morning, going to see Dr B is one of Tucker’s favorite activities. He is weird, yes!  It turned out that both boys have ear infections, and Easton’s is pretty bad, even though he’s just been off of antibiotics for 4 days! Tucker of course had no symptoms and wasn’t acting “sick” at all, totally unphased.

We have an appointment with the ENT next Tuesday for Easton.  I am quite nervous that antibiotics aren’t helping to get rid of the infections, or that his immune system isn’t able to fight them off. I don’t like that. I am all for getting tubes, as he can’t seem to get the fluid off of his ears, and I know that having fluid on his ears can cause delayed speech. He also hasn’t walked yet, even though we all believe he has had the physical ability to walk for months now. He stands, goes to take a step, then gets scared and sits down. He has been cruising around furniture and holding our hands to walk for months. Chris thinks that he is just not confident of his balance because of the fluid on his ears. He will be 17 months old in a few days, not walking at this point is not cool.

The fourth annual Fishing for Tucker BASS fishing Tournament is on February 8 in Cabela’s in Gonzales, We are excited! 

Happy New Year!

2013 has ended, and I am embarrassed that I only posted twice last year! L

One of my goals is to post weekly in 2014, as life is busy and fun around here, and worth capturing in words.

2013 was a huge year for us, and I think Chris and I both agree it was a great year. There are several times lately when Chris and I just look at one another and smile, just happy that we get to raise these two boys together with all of the mess and noise it involves.

We sold our first home this year. It was a long, ugly process, as it turned out that our purchase 7 years ago wasn’t completely legal. !!! How does that happen? We still don’t’ understand. So we had an offer on our house in June, but we didn’t actually get the final purchase done until September 30. In the meantime, the buyers wanted to rent our house, then didn’t want to rent it, then did….so we rushed to move our stuff into storage and spend 6 weeks in my parents’ house (Dylan’s room to be exact!) and the people didn’t even move in to rent it. 

The whole point of selling the house and moving was to get Tucker (and eventually Easton) into a better school. And yes, Better is subjective, but we know that Tucker needed a change. I was so upset when I thought that Tucker wouldn’t be able to start the new school year at the new school, as transitioning him into a new classroom, then transitioning him to the new school in September would have been horrible. Luckily the new school agreed and Tucker started at Oak Grove in August. We kept Easton at the in home sitter that we love near our old house and my parent’s house, so that made for long morning drop offs for us.

Living with my parents and 3-4 siblings (Jessica is there from her mom’s house every other weekend) was truly insane. It was great in many ways, too, except that the boys really lost it when they realized they weren’t on a 6 week vacation J My parents opened their homes to the 4 of us, our stuff, our noise, our demands, and Tucker’s therapists. Poor Dylan slept on the couch for 6 weeks and had to knock before going into his own room to get his clothes.  But now that it’s all over, we miss each other.

We took part in two great weddings this fall-one of my best friends, Rachel got married in Illinois. Chris and I had a blast traveling with Lacy and her hubby, and spending four nights kid-free, hanging out with new and old friends. Their wedding was very beautiful, we were blessed to be part of it. Once we got back, the kids acted like we had been gone for years. This was the beginning of Easton’s severe mama-it is, he hasn’t left my hip since Sept 2, except for when he’s at daycare.

My sister Sarah married Bradley right before Christmas, so we had many wedding activities in 2013-the engagement party, shower, bachelor and bachelorette parties, and the wedding weekend in New Orleans. They asked Tucker to be the ring bearer, and I’m so glad they did. He was so excited to wear fancy shoes and to wear a suit that matched his daddy and Bradley.  He pretty much skipped up the aisle, he was so excited. Their wedding really was a fairy tale, complete with Sarah and Bradley riding off in the horse and carriage to a fireworks display. The food was SOOO good, Easton was grabbing food off the trays as fast as they’d serve it to him. ;)

Christmas was nice, it was our first one in the new house. Tucker really seemed to understand that Santa was the one brining the presents, although really the boys got more from their grandparents than from Santa J  Our Elf on the Shelf Barnaby arrived on December 1^st, and he was as unpopular with both boys as ever.  I posted the photos of Barnaby on  facebook, he is quite the good citizen…doesn’t get into all of the shenanigans that other Elves do. I actually miss him, lol!

We have a lot of goals and changes that we plan to make for 2014. I’ll post about them soon, as we are excited to work towards better health this year. I’ll also post more medical and behavioral updates about Tucker and the latest Easton antics.

Happy New Year!

When Three Became Four (or Five, if you Count Buck the dog)

Easton recently turned 9 months old. This post is long and very outdated, as there is about 9 months of events to re-cap. I have really got to find time to keep up this blog!

Easton has certainly changed things around our house, in a way that is hard to explain. There is less time, less money, certainly less sleep ;) But there is so much more love, happiness, and blessings since his arrival. Tucker is much more mature, and even though the first few weeks with Easton at home were a struggle, they were a struggle in ways that were perfectly expected….more work, little sleep, Tucker learning how to share his mama and daddy with a little person, Chris and me having less time for ourselves and one another.

We didn’t prepare Tucker for Easton’s birth the way that I would have suggested to any other mom with a young child. I didn’t get him a baby doll to play with, or tell him that he’d be a big helper. But we did talk about babies a lot, and I’m pretty sure he was expecting another baby like Kinley….as in, an 18 month old that he could play with J  I was in the hospital for 6 days on bedrest, and Tucker only visited me once. Having too many visitors could have raised my BP, but my heart hurt to see him. So one night he came up with Chris, and he walked in and said “change the diaper.” I said, “there’s no baby yet!” At home, he told his teddy bears “mama’s comin’ home” over and over. Poor baby missed me!

During the first few days and weeks after Easton’s birth and homecoming, I asked God for strength constantly….the strength to get through the next few hours, or the whole day….the strength to not go into my sleeping husband’s room and demand that he not get any sleep either ;) (The poor man was probably only getting 4 hours of sleep and then going into work in industry where he needed his wits about him….but hey, that was 4 more hours than I was getting!)

I just knew that whatever we were doing, we were doing it wrong…because Tucker stopped progressing in therapy.  He had a few pee pee accidents, and one poop accident so I had to pick him up at school. I was exhausted and I was so worried that the other KG kids had made fun of him (he started KG the day that I was admitted to the hospital).  I worried about what impact Easton would have on Tucker’s therapy and his abilities to move forward. I had devoted so much energy and thought to Tucker for the last 6 years, surely things would slip now that there was a new little person to tend to?  Time and time again, his therapists, his pediatrician, and even his mito doctor reassured me that it was perfectly fine for Tucker to regress a little. It was actually a blessing because it meant that he noticed “wow, something is very different here! This little bundle of blankets has a person inside it!” It was also great that Tucker was upset to not spend as much time with Chris and me. It meant that he really valued his time with us, and we couldn’t be replaced by other caregivers.  This was actually news to me, as I thought he preferred his Mickey Mouse videos to my singing and rocking any day ;)

There were several times that we felt downright awful because Tucker noticed that Easton didn’t have to follow the same rules. Easton got to stay up late with mama and daddy, but Tucker had to go to bed early to be ready for school the next day. Of course, we had to keep Easton up until at least 10 pm to hope that he would sleep until maybe 4am…but Tucker didn’t understand that, he thought Easton was up playing with us.  One time we put both boys in the tub, and Easton immediately pee peed. We laughed at him, so then Tucker stood up and peed in the tub, too! He got a spanking and we had to of course empty the tub and clean it. 

Having Tucker’s therapy sessions was such a blessing because he was out of school for over a week when Easton came home due to Hurricane Isaac. I couldn’t drive us anywhere or play outside with Easton, not that I would have wanted to. So Tucker spent a lot of time inside with Easton and me except for therapy. Then he got his routine and his rewards, including going to the mall and playing outside.  I was so nervous to be home with both boys alone, but really Tucker was very good. He was very patient while I fed Easton his bottle, and during pumping sessions. A lot of the time, he’d get a book or a music toy and sit next to me on the couch while I was busy. I would sing to both boys and Easton would stare up at Tucker, it was very special quiet times with both of them.  The problem would be on the weekends when the therapists were making up the sessions from all of the hurricane time. Chris was home, and at first Tucker was even more attached to Chris. So one time Tucker asked Chris to rock in the rocking chair, and Chris said no, he could rock after therapy. So Tucker listened and went to do his therapy. Then when he came out to potty, he glanced at Chris and saw him rocking Easton……well if looks could kill, Chris would have been dead in the rocking chair!

Tucker wanted to do anything that Easton did, and whenever we gave Easton attention for something, Tucker did it too. So when we’d try to get Easton to burp, we’d pat his back and say “come on, Easton, burp” etc. and Tucker would burp.  Easton wore the all in one pajamas that zipped, so Tucker tried to put on the newborn sized PJs! I found him a few size 5 all in one PJs with the footies (they even sell them in grown up sizes!) at Wal Mart, and he was thrilled.  The problem was that he couldn’t get them off quickly enough to get to the potty. One night, Chris and I were up late watching Duck Dynasty (well, we would have been awake with Easton anyways!) cracking up laughing at Uncle Si. Tucker shuffled out of his room rubbing his eyes, saying “potty, potty, potty,” so Chris and I ran to help him unzip his PJs. Well, we were too late, he peed all over the floor. I put Easton down in the playpen to help Chris calm Tucker down and clean the floor. When we were done, we got Tucker back to bed and checked on Easton.  He was screaming and completely covered in puke…..so the baby was changed and cleaned, and the play pen sheets were changed. And Uncle Si kept us laughing the entire time. It was such a “normal” night for parents of two kids, and we laughed hysterically….maybe we were delirious or maybe because it really was pretty funny.

Tucker is a baby expert; in fact, I can’t imagine raising a baby without a Tucker to tell me what I am doing wrong. He knows when the baby needs changed well before I do. The Huggies cover up the smell of poop pretty well, so sometimes Easton has a diaper full and I don’t smell it! But Tucker does!  Anytime we get ready to leave the house, he reminds me to “get the baby! Put him in the carseat” as if I have ever forgotten the baby! And as if I’d ever put him somewhere other than his seat ;) He helps me pick out his clothes (almost always the clothes with firetrucks on them). When Tucker is tired of sharing his toys or parents with the baby, he even puts him to bed.  He says “put the baby in the bed” “put the baby to sleep.” He turns on the music box, turns off the light, and waits for one of us to put Easton in the crib.  Tucker believes in the Cry It Out Method. You put Easton in the crib. If he cries, you shut the door on him. If he cries louder, you turn the TV on to cover up the noise….seriously! Most of the time he wants Easton with him, but when he has had enough, he will let you know!  During the first few weeks, Chris and I struggled to figure out what Easton’s cries meant. One night we couldn’t get him to stop crying and Tucker just stared and stared at him.  Chris asked “what is wrong with him?” Tucker replied “he won’t stop crying.” LOL

We have had many more adventures over the last 9 months, including medical ones. I hope to find more time to update everyone on all of it soon!

Kyle

Many of you who are my facebook friends saw me post about Kyle or share Team Kyle updates from time to time. I wanted to share a little more information about this amazing boy.

On January 8, 2013, Kyle passed away at home with his family. He was 8 years old, had the nickname “Big”, and he taught tens of thousands of people to Live Life for Today during his all too short time on earth. I met his mother through the March of Dimes, and I have seen her in person and hugged her several times….

I am trying to process the loss of Kyle, and imagine what Kate and the whole family is going through right now.

Nothing I write would do justice to Kyle or his family, I just need to get out all of the emotions I am dealing with, this is more of a post to explore all of that. It is, as usual, all over the place.

We know instinctually that parents are not supposed to outlive their children, it doesn’t make any sense. We are meant to care for our children and see them grow up. Preemie moms and mito moms know this is not always the case, and I know many babies and children that have gone to heaven long before their parents. Babies that fought alongside Tucker for months passed away right before Tucker came home, and another one a few months after. We mentioned their names often, asking them to be with Tucker and watch over him. Samuel’s name is mentioned often in our home.

The Sandy Hook elementary tragedy was so awful, I heard reports of it through facebook then I watched online news, it was so hard to believe. As the reports kept coming, and we learned the victims were mainly 6-7 year olds, I was glued to the TV, learning all about the kids. I was so angry at the one news channel that kept showing the killer’s picture and talking about him instead of the victims. The other channel showed pictures of each child-one little boy on a 4 wheeler, one little girl who asked for cowboy boots for Christmas (like my 5 year old cousin), one little girl playing the piano with her little brother….then I learned that two of the children had special needs and/or were nonverbal. I know that their families’ lives likely revolved around therapy schedules, dr appointments, arranging schedules to avoid meltdowns, and putting so much energy into helping them reach their potential. That is all over for them now.

While so many people reacted by demanding stricter gun control, asking for better mental healthcare (as they should), I just felt very overwhelmed and tired. Not the physical exhaustion I felt when Easton was just home from the hospital, up every 3 hours to eat, and then I had to pump, and then be up all day with Tucker…more of the emotional exhaustion from trying to comprehend how something like this could happen to families like mine. As the country has kind of moved on just a month later, I still wonder about the families. One of the articles I read explained that this tragedy particularly hit parents of 6 year olds, as most of the victims were around that age. It explained that we know what 6 looks like, sounds like, how its hair smells so clean after a bath, how 6 delights in learning new things….6 is our whole world, and we can’t fathom it being ripped away. Although Tucker is not a typical 6 year old, about 90% of the article applied to him, and also my 5 year old cousin.

Tucker’s anxiety increased tremendously during the Christmas break, he really needs his routine. He is having trouble sleeping, crying real tears a lot, throwing fits, chewing his shirts up, and grinding his teeth. We can never tell if he is sick or if this is all behavioral and anxiety related. He can’t tell us….and that is hard. I called his neurologist and she is decreasing his dose of SSRI meds and adding risperadol for the OCD and anxiety to hopefully help his compulsion to chew and grind his teeth. We got him chewy tubes to gnaw on which he uses often, but sometimes they are just not enough. This has added to my feeling of being just plain tired and wishing things were different.

January 8 started out as a good morning. I woke up on time (this never happens!), DH helped even more than usual with both kids, Tucker was well behaved and excited about school, and Easton was smiley and so very good, as usual. I had a decent ride into work with my sister, and I settled in to check emails then had a quick peek at facebook. This is where I learned that Kyle had passed away, in his home, with his parents and his "kids"….the wind was knocked right out of me. I couldn’t cry, I didn’t really believe it. I looked at Team Kyle’s page, at everyone’s statuses, and they all were telling me it was true. There are so many reasons why my heart is broken, I met Kate on several occasions, our babies’ stories started out so similarly, she provided me so much support and advice over the years about tube feeding, life with so many people observing you, the feeling of not being able to help your child… I never met Kyle, but as many others know, we didn’t need to meet him to love him. Kate probably didn’t get a full nights sleep in over 8 years, yet I know she’d gladly live that life forever if it meant that she was up caring for Kyle.

I heard this song in the car that day as I was at my lunch break http://www.youtube.com/watch?v=UUEy8nZvpdM , and I couldn’t stop crying, sobbing really. Kyle, you touched so many lives and taught us all so much, now you have gone to rest. The work for your family of learning how to be on earth without you is just beginning, I will hold the St Clair family in my hearts forever.

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 :)