Beautiful People

The other day, X wanted to go on a walk. He kept asking and asking and I finally told him ok, even though it was so hot. Once he was securely fastened into his wheelchair, we went to a local elementary school and made our way to the playground. There were some other kids playing there, but I parked X in the shade and sat on the ground next to him so I was more at his level. I was reading him books when 2 little boys who were about 8 years old walked up.

They hesitated for a moment, but finally asked why X was in a wheelchair. I explained the reasons to them as simply as I could. Then they asked if he'd ever been able to walk or run. I told them no, but that he might be able to someday when he was bigger like them. They asked if they could play with him for a while. I told them sure and let them take turns showing X pages from his books and helping him play with his toys from his backpack. Then they asked if they could help him run. I didn't understand at first, so they explained that they wanted to help him run in his wheelchair. Then I got it. I told them it was ok as long as they stayed near by and in the shady areas.

They each took a handle of X's wheelchair...and they RAN!! They ran and ran and ran and happily pushed X along with them. He was squealing, giggling, cheering, and clapping his hands. He loved it!! I think that was the most freeing feeling to him to be able to just move! He felt wind on his face and was playing with 2 other kids for the first time in his life....2 kids who saw HIM and not his disabilities. He had so much fun! They wheeled him back over to me when they were worn out and told him they hoped he could play with them again another time and then they were gone.

I don't know who they were, but those 2 little boys are growing up to be incredible people. Their parents have done an AMAZING job helping them learn to see past the outside and see the person within. They showed such compassion and caring to involve X in their play. Today, X experienced what it's like to have legs that work. He ran. He played. He had independence. He loved every minute...and as his mother I am SO thankful for 2 little boys who took the time to let him have those experiences! 

The Life That's Chosen Me

This video sums up everything I would say in this post. :)

Post-surgery update

Sorry for the long delay in an updated post. X has been recovering from his surgery and getting back into his therapy routines. He's needed extra one on one attention and snuggles. That's perfectly fine with me. :) I love my X snuggles!

How is he doing post-surgery? Overall, he's doing REALLY well! He's stronger and making more progress than he has in a long, long time. It's a little strange to see a symmetrical little tummy after not ever seeing one for his entire life leading up to the surgery. It's strange to see a scar where there wasn't one before. The surgery was still worth it, though. 

At this moment, we're still working through some anxiety that's left over from the surgery and time in the hospital. He struggled with anxiety when he first came home from the NICU at 3 months old. We were expecting something similar again after surgery, but nothing could have prepared us for how severe it actually was. 

This time, his anxiety was severe. REALLY severe. The first few days he was home after surgery, simple things like his sock falling off during play would cause him to cry and shake for several minutes. He would be completely inconsolable during that period. 

To see your child be in intense pain - whether physical or emotional - and having very limited things you can do to soothe them, comfort them, and make it better is heartbreaking. There was more than one occasion when all I could do was hold X close and whisper to him that we were here until he calmed down again. 

We've learned a lot to be able to help him through physical pain. We know what medications to give, when to use heat or cold, positioning, stretches, etc that will help relieve the pain he feels. It's always sad to see him hurting and I often tear up right along with him. The emotional pain, however, is something we haven't had much experience with. We don't have the same tools to be able to help him...at least not yet. 

More than anything in the world, I wish I could spare X all the pain he deals with. He rarely shows how much discomfort he's actually in. Sometimes we don't even realize it until something changes that makes us look back on past events and realize that he MUST have been uncomfortable. For the most part, X is just his normal, happy self. So when he does hit a point where something hurts enough to make him cry, it's usually pretty severe. The crying is usually sobs mixed with screams. We often cry with him; especially about emotional pain when we're so unprepared to help him. 

Hopefully this week, we'll have more ways to help him. X will be going to his first therapy appointment. Due to X's age and limited physical abilities, I don't know how much a therapist can do even in play therapy to help him with his anxiety. Still, I'm hopeful that they can help US learn more about how to better help X through emotionally painful situations. It will be an interesting and educational opportunity for all of us. I'll update again after our appointment. 

It is in your moments of decision that your destiny is shaped. - Tony Robbins

This doesn't happen often, but every once in a while, I have a sad moment. Today...yeah, I had a sad moment. It's not often that I feel this way because the truth is our family has been blessed beyond measure to have X with us. When you spend 3 months on a nearly daily basis watching your child walk all the way to death's door and wonder if they'll come back to you or not, you don't take your child for granted. Actually, you don't take anything for granted anymore. 

Then these sad moments hit and I feel selfish for having them. Honestly, what do I have to be sad about? X is alive. He's healthy. He's exceeding expectations. He's making gains on a regular basis. He's happy. So why am I sad? 

Maybe it's the stares from other people. I'm sure they don't mean to express pity, but sometimes that's what shows on their face and in their eyes. Pity that our child is different. We know he is...but that isn't what we see. 

Maybe it's the huge stack of paperwork I still need to do. Truth be told, the paperwork never ends and sometimes I just don't have the mental energy to deal with another form to fill out.

Maybe it's seeing X come home from the hospital looking like he's been starved because he felt so bad he couldn't eat for several days. To see your child's ribs so clearly defined that they look like nothing more than a skeleton is sad. Yet, that's what he looked like after surgery. He's slowly regaining weight, and his ribs no longer poke out...but that's not an image you quickly forget. 

Maybe it's a culmination of months and months of very little sleep. In order for X to keep his weight up enough, he has to be fed every 4 hours around the clock. He has had to be fed around the clock his entire life. I don't mind taking care of him because that's what he needs. Yet some days the exhaustion hits harder than others and everything makes me a teary-eyed. 

Maybe it's knowing the hell my baby has already been through in only 20 months of life...and knowing that in order for him to have the best quality of life in the long run, I have to send him off to surgery again in just a few more weeks. That decision never gets easier. Handing him over to surgeons never gets easier. It actually gets harder as he gets older. 

Maybe it's knowing that the decision to proceed with surgeries he needs will cause him to experience weeks of high levels of anxiety and PTSD-type symptoms...and also knowing that there's very little we can do as his parents to comfort him. We can be here and hold him and cry with him...but we can't fix it no matter how much we want to. 

Maybe it's months at a time of remaining home-bound to protect X from all the bad respiratory viruses that would easily hospitalize him for weeks or months. For about 9 months out of the year, X and I go no where except doctor's visits. We stay home together. I do love spending that time with him, but after 9 straight months of only seeing the inside of our home, we both long to get out and just have a normal life. 

Maybe it's knowing that because of things outside of X's control, there WILL be people who stare, point, laugh and tease him. It's just a matter of time. It's incredibly hard to have to already be thinking of ways to explain to your child that some people just don't know better...that they're afraid of what they don't understand...that he's not the one with the problem...and knowing that no matter what I say to him, his feelings and his heart will still be hurt more times than I'll be able to ever count. I can't prevent it, I can't ease the blow for him. All I can do is be his soft, safe place where his tears can be wiped away and more invisible bandages get placed on both of our hearts. 

Maybe it's the unknown of X's future. Will he be able to care for himself as an adult? Will he be able to work to support himself? If not, who will be there for him when we aren't around anymore? 

Maybe it's all of this combined...all of the things I don't think about every day because frankly it's overwhelming to think about any of this in depth. 

Then I hear X's sweet little voice over the monitor as he wakes up from his nap: "Hi, Mommy! Hi! Love you! Hi!"

At that moment, I wipe away the tears, I put a smile on my face, and I go snuggle my precious boy again. I will hold him a little longer than necessary. I will sing with him, play games with him, tell him over and over how much I love him and how proud I am of him and at the end of the day I'll let him fall asleep in my arms and hold him til I physically can't anymore. I will be grateful for every good moment because those moments......

Those are what get me through the hard moments. 

Surgery is DONE!

Last week, X had his big surgery day. He was SUCH a trooper leading up to surgery. It's not easy to go nearly 24 hours on only an iv at a year old. He did it though! He was brave about getting his iv in. He was brave about going with the doctors. He was just...well, brave!

The surgery itself went well. It only took about an hour and the original estimate was around 3 or 4 hours. It also turned out that what looked like a hernia in all the images and what felt like a hernia in all the exams actually wasn't a hernia at all! It was a big area of hyper-extended muscle. So, the surgeon tightened up the muscle using a pleating technique similar to putting pleats into pants and then removed a large portion of excess skin.

X is an angry little guy when waking up from anesthesia usually and that day was no exception. They had to call us back into recovery the moment he woke up instead of the usual 30 minutes later because he was inconsolable. He was hurting, disoriented, not dealing with the meds well, and he just wanted Mommy. He wanted kisses from Daddy, but he was so angry, he would only sit with Mommy. Poor guy :(

Within an hour, he was able to go back to his room and we started the recovery process. It was rocky few days. X has some stuff going on with his lungs that doesn't typically cause him any issues. After anesthesia and surgery, however, it's a different story. He was having a really hard time keeping his oxygen up. He ended up on a cannula for a few days before he was able to get rid of the extra support. He also started developing a wet sounding cough and a rattle in his chest. He also spiked a high fever of 102.6 F. A low grade fever after surgery (below 101 F) isn't uncommon, but this was awfully high; especially for his age.

The combination of needing oxygen, the rattling, the cough and the high fever can be indicators of the early stages of pneumonia starting. Thankfully, his pediatrician intervened and got him started with chest physiotherapy as soon as possible. It was just what he needed and we thankfully avoided pneumonia!!!

He did need pain medication for a couple of days, but being the strong boy he is, he didn't need any medication at ALL by day 3! Most ADULTS wouldn't have handled pain that well!

The biggest hurdle was getting X to drink his bottles. That was a struggle...ok, it was a BATTLE! The night of surgery, he drank 20 oz of his bottle in a few hours. He kept up the great drinking until about 4 am the next morning when his fever spiked. By that time, he had to have iv fluids turned up as he was drinking less and less. By the next day, he wasn't drinking at all. We asked to have his GI doctor paged.

When she saw him, she agreed that he needed to stay until he could drink enough fluids on his own to be hydrated. She gave him some medication that would help him feel hungry enough to want to eat and that was all he needed. He drank enough that day that we finally got to come home!

After a week in the hospital, X's physical recovery is well on its way. His incision looks great! He's healing nicely and moving and playing a lot more. His spine is already straighter than it's been in a while and his reflux type symptoms are totally gone! YAY!

The big thing we're working on now is healing the emotional and mental injuries. In a child like X who has to undergo frequent and often painful things, they develop a lot of anxiety in the hospital. That anxiety amplifies after they come home. That's what we've been working through the past few days. It's almost PTSD (Post-Traumatic Stress Disorder) type symptoms, but in a 20-month old little boy. It's heartbreaking to see that his toys, his sock falling off during play, even sometimes clapping his own hands startle him so badly that he just cries and shakes. But, true to who he is, X is overcoming the anxiety a little bit each day.

Incision with the bandage still on

Incision with the bandage off

“It ain't what they call you, it's what you answer to.” ― W.C. Fields

A few posts back, I talked about IVH, and what that meant. I also mentioned there were some other things that related back to having IVH that we would talk about later. Later is today for one of those things: Cerebral Palsy.

We've known for most of X's life that there were going to be some pretty big hurdles he would face. Once we knew about the severity and location of the IVH that X had, we pretty  much knew he would have cerebral palsy. It was really just a matter of finding out the exact type and extent of cerebral palsy he has. That would, unfortunately, take time. A child's brain is still growing and developing until somewhere between 18 and 24 months of age. Until X was at least 18 months old, we wouldn't be able to get the full view of what damage had been done as a result of the IVH.

About a month ago, X had an MRI. He was put to sleep and an MRI was done of his brain. We've had a copy of the radiology report for the past month. I'm not going to talk about it because it's written in what I'll just call "medical speak". It's VERY technical and it's taken us a few conversations with X's neurologist to understand exactly what we were reading.

The really important report we needed was actually written by the neurologist. We just got it a short time ago. A lot of it was background history about X, some is a simplified explanation of what was found on the MRI, and the very last part was the "Impressions". (Just in case you're wondering, on pretty much any medical report, "Impressions" is where you'll find the diagnosis information.) That section was - and usually is - very brief. There were three things that stood out. First, X has mild hydrocephalus which we already knew about. Secondly, it turns out X only has 1/2 of his cerebellum. That more or less just means he'll have extra trouble with balance and coordination. The last thing was Cerebral Palsy (CP) . The type of CP was also defined as spastic quadriplegia.

You might be asking yourself what that means. I'll explain what that means. First and foremost, I do NOT suggest you start Googling this! Not everything you find online is correct, some of it is very broad information, and some is written in more of that medical speak I referred to earlier. That can make it nearly impossible to understand.

Ok, here is X's CP diagnosis explained:

In super simple terms, spastic quad CP means that X had an injury to his brain (IVH) that has affected his muscles, coordination and balance. That's really all the important stuff to know. There are several types of CP. Spastic quad is just a fancy way of saying the muscles in all four limbs - so both legs and both arms  - are affected in his specific type of CP. Now obviously, CP is more in depth and complicated that what I can explain here. What I can say is we've gone over everything with X's care team and have learned as much as we can about what this diagnosis means for X specifically. How it applies to him and his needs is totally different than it applies to someone else.

Here are a couple of graphics that might help explain the various types a little better:

Again, this is all super simplified compared to all the vast amounts of information about CP. This is just what applies to X. We already knew he had special needs. As a result of this CP diagnosis, we've been given more answers; answers that will help us to help him. He needs a wheelchair. We don't know if he'll always need it or not. The odds are he probably will. He may not always need it for full time use, but he'll likely always need it available to him. As a result of the type of CP he has and because of missing half of his cerebellum, his muscles tire far easier and much faster than yours or mine do. Every movement he makes is very deliberate and conscious. He uses a lot more energy to do something like hold his head up that you might. So, the wheelchair will allow him a place to rest and conserve his energy. It allows him to safely go where he wants or needs to go. For X, a wheelchair is a blessing. 

So there you have it; the latest, greatest, up to the minute info about the journey we are on with X. It's an interesting ride to be sure! 

The S word...

The S word came up the other day in a conversation regarding X. No, we weren't at all surprised. In fact, we were almost giddy that it was used...although, this is probably not the S word you're thinking it might be! I'll explain...

One of the complications of X's delivery and prematurity is a hernia...and it's a doozy of one too. It's very large and....well, here I'll show you:

This is what is looks like from the inside....

And THIS is what it looks like on the outside...


















Unbelievably, this was taken on a day when it was "smaller". Yeah...not good.

There are many theories about what kind of hernia this is exactly. We've heard it's diaphragmatic, maybe abdominal..there are lots of guesses. It doesn't really fit into ANY category. What I can tell you is that X has had this since he was just a few days old. For basically his entire life, he's had to try to do everything from eating to rolling to sleeping and anything else babies do with this huge ball on his side. It's been a rough journey to say the VERY least.

The complications from this hernia and the pressures it causes range from reflux symptoms to now the beginnings of scoliosis. We've been to see multiple surgeons and each time we were more or less dismissed. This did NOT make this Mama a happy lady.

You see, what I couldn't seem to get the surgeons to understand was how much this one thing was negatively impacting X's life. He can't drink more than 4 ounces of his bottle at any one time. He has reflux that he didn't have before this got so large. He struggles with GI problems from the hernia compressing his GI tract. And now his spine is starting to be affected as well. While the rest of the issues aren't great, they're manageable with round the clock care and a big team working together to make sure X's needs were being met. Then we found out that his SPINE was being affected. Frankly, that's not a side effect we were willing to put X through.

So, we went back to the surgeon a few days ago. We went very prepared this time. We had letters from as many other members of X's care team as we could possibly manage. In these, they each explained how this hernia was impacting their specific realm of care for X. They talked about their observations about how it was negatively impacting his quality of life. They talked about their concerns with it not being addressed sooner than later. We went prepared with examples of how each and every symptom caused by this hernia had worsened since our last visit. Finally, we talked to X's GI doctor who PERSONALLY went to talk to the surgeon face to face and they agreed it was absolutely time to deal with this.

So in a couple of weeks, X will go in for surgery to finally repair this hernia. Yes, the dreaded S word.

The downside is that this will be a big surgery. It can't be done laparoscopically with the size and placement of the hernia. There's too much risk of puncturing something that shouldn't be punctured. Instead, X will have to have the repair done through a large incision on his abdomen. It'll reach from about his belly button to his back. It'll be large. It'll hurt. It'll leave a pretty big scar. It means several days of being in the hospital to control pain and get him back on track.

If I said I'm looking forward to this, I'd be lying. I'm absolutely not looking forward to the surgery part. It's risky but necessary. I know he needs this...but just like every other time we've had to make a hard choice or agree to put him through a hard procedure, I worry. He's my baby. He's already had to fight so hard in his short life and sometimes I really dread putting him through more. Despite my own fears and worries, I know in my heart of hearts this is the right decision for X. It will improve his overall quality of life. If it was purely a cosmetic procedure, I wouldn't even consider it. X is perfect exactly how he is. But, as I watch X struggle with so many complications that make his day to day living so HARD for him - all of which are a direct result of the hernia - I'm reassured this is right. This needs to happen. I AM looking forward to the positive impact this will ultimately have for X...and I'll be right there with him through it all.

Medical Equipment and Mixed Emotions

This past week, we've entered a new phase of X's development where he's ready for medical equipment. An order was written and submitted for him to get a bath chair, wheelchair and stander. Another order was written for him to be fitted for DAFOs (a type of brace for his feet/legs). An example of the bath seat and a DAFO are below.

A bath seat

DAFO

As great as these devices are for X, I experienced some very mixed emotions about them at first. The day we were told the orders for this equipment had been written, I found myself a little misty-eyed off and on. I've become used to hearing hard things. I think it just goes with the territory when a child has special needs. Still, there are times that hearing something I knew was coming catches me off guard and I'm not always prepared for the range of feelings and emotions that get brought up.

Having a special needs child is - for most parents - not anticipated. In X's case we had no way to know or prepare for what his needs would be. There are still a lot of unknowns even now that he's 18 months old. Much of his development and abilities depend on him. We're doing our very best to see that he receives the right care, support and devices to give him every opportunity to reach his fullest potential. This equipment is one of many steps that need to happen to help him achieve the best possible quality of life that he can. 

Over the past few days, I've had time to think and reflect on my feelings about him needing medical equipment. The sadness that hit me initially has dissipated and now I feel nothing but excitement! What a wonderful time we live in to have these devices available! I'm excited to see how having these devices will improve and enhance X's life. He'll finally get to experience things in a way that he's not ever been able to before. 

I'm sure there will be many other times in X's life that we'll be told something that brings up more mixed emotions. I learned a long time ago that this will happen often and when I least expect it. The best thing to do when that happens is to face those emotions and allow myself to feel them. It's ok that I'm sad sometimes; but at the end of everything I've always been able to find a reason to be thankful.

Dear Life: BRING IT ON! I accept your challenge!

Choices

One of the hardest parts of having a special needs child who is medically complex is the constant need to make choices regarding their care. It's not an easy task. It's not as simple as choosing a good pediatrician,  deciding whether or not to vaccinate, choosing cloth vs disposable diapers, etc. I remember those being the (at the time) daunting choices we were making before X was born. After he was born, our choices became much more critical; even life and death at times. 

As X has grown older, it seems like those decisions we need to make become increasingly difficult. We've had to choose over 20 providers for X. We have to weigh the risk and benefit of several medications. We have to make choices regarding what tests and procedures are beneficial and which aren't; knowing that often times even the necessary ones are painful and difficult for X. We have to choose which surgeries are in his best interest and which aren't. There's so much we constantly must make choices about. The difficult part is that we aren't the only ones who have to live with the consequences of our choices. X does too. 

This past week, X was acting very abnormally. He's typically a very good sleeper. He's usually very happy. A few nights ago, he went to bed happily. Four hours later, he woke up screaming and crying. He was inconsolable for 4 hours despite trying everything that usually works. We knew we/he needed help, so we called his wonderful pediatrician at 2am. She asked questions and after hearing the level of discomfort he was in, she suggested we take him to the emergency room. She was concerned that he may have a possible bowel obstruction.  

We were instantly faced with the choice of taking him in or waiting it out. The roads were bad from a snow storm so getting to the closest children's hospital 45 minutes away wasn't possible. This meant taking him in would mean going to our local hospital where they really aren't equipped for the needs of children; especially special needs children. It meant an exposure to illnesses and germs that his weak immune system may not be able to combat. It nearly certainly meant having to watch him endure tests and procedures that would be hard on him. Or we could wait it out and risk a potential disaster. Nothing about this was an easy choice. It never is. 

We opted to take him in. He went through hours of tests and procedures. He was miserable and crying. They finally figured out he didn't have a bowel obstruction, but he did have some other issues that in the doctor's eyes needed to be addressed urgently. Around 8am, we were given two choices: they could admit X and transfer him to the children's hospital or we could go home and see his pediatrician later in the day. We opted to go home and see his ped later. 

I'm sure the doctor thought we made the wrong decision. But, we know X really,  REALLY well. The issues the ER doctor was convinced were urgent are "normal" for X. We deal with them all the time. With no bowel obstruction, it was best to go home. So we did. It turns out X is just fine and was having a harder night with some of his regular challenges. 

We've made many hard choices the past 17 months. There are many more we'll still need to make. We try to do what any good parent does: make the best possible choices for our child that we can. The picture below perfectly sums up what making these choices is like:

Failure To Thrive

What does it mean to thrive? According to every definition I could find it means to grow, develop, flourish or succeed. While X thrives in many ways, he struggles greatly with his weight gain. He has been diagnosed...or perhaps "labeled" is a better way to put it...as Failure To Thrive (from here on out, we'll just use FTT). You're probably asking yourself what does it mean when a child is labeled as FTT? Basically, it means they don't gain weight as expected. This is one of the main things we have to watch carefully and consistently with X.

If you have children, you're most likely familiar with growth charts as well as percentiles for height/weight/length. Can I just say: I HATE GROWTH CHARTS! Seriously, I hate them! X doesn't fall on the "normal" growth curves. He never has. He started life at a tiny 1 pound 12 ounce weight. Now, at 17 months old, he weighs 17 pounds. He's tiny by traditional standards. However, if you stop and look at how far he's come from that little 1 pounder start, he's come a LONG way!

For the longest time I measured every drop of formula or food he took in. I diligently charted it, counted calories, and worried when he didn't eat as much or gain as quickly as other kids. I tracked every gram of weight he gained or lost. If you want to know the truth, I almost became obsessed with charting his intake and making sure X hit goals and specific amounts of calories and goals for amount of weight gained per week. I worried constantly.

One day, I stopped and realized...tracking X's intake and weight gain was consuming me. It was actually GETTING IN THE WAY of my bonding with X. He was picking up on my stress and worry. As a result, he didn't eat as well which ultimately meant he didn't gain as well. When I realized that, I stopped. I deleted the apps (yes, apps plural) on my phone and deleted the bookmarks on my computer. I realized it didn't matter. He was gaining. He was growing. He has never done things in the "traditional" way ever. Not once in his whole life. I needed to trust him that he could eat and grow and be healthy. I needed to trust myself that I was doing everything in my power to help him do that.

We know there are medical reasons for why X doesn't gain and grow as well as other kids. Some of it is because his body simply burns more calories for a few reasons. Some of it is because his metabolism is very high. Some of it is because of some some gastrointestinal problems that are being addressed. Some of it is because of a hernia. Some of it is hereditary to have a tall, slim build (his older brother has the same body type). There are reasons why. Most of them, we can't change. The ones we can help him with are being addressed.

In the past 6 months, I've stopped tracking and obsessing over calories, intake and weight. A funny thing happened when I stopped: X started eating more, gained better and grew more consistently. He's still tiny. It's just who he is. I've learned to let go. I trust him. As a result, he trusts me more. We've bonded much better. His feedings are a relaxed, happy, and playful time. If he only drinks 1 oz, then he only drinks 1 oz. He'll drink more later. It's ok. It's more about the quality of his feedings than the quantity he consumes. It doesn't mean I don't keep an eye on his overall pattern of gaining and growing so that I know if he's headed for trouble. I just don't track and obsess over it anymore.

To me, X is in no way failing to thrive. Sure, his weight gain is slow. FTT kids tend to not have gained 3 times their birth weight by age 1. X has gained 17 times his birth weight!

Most kids who are FTT also don't interact with their surroundings. They won't make eye contact. They're irritable. They're severely developmentally delayed with no other explanation as to why. X is nothing like that! He's very interactive, maintains eye contact very well, is happy and well adjusted, and his developmental delays are due to his IVH and the resulting complications from that.

Many FTT children end up on feeding tubes. For that matter, many preemies and special needs kids end up on feeding tubes. It's due to a variety of reasons, but is a very personal choice parents must make when weighing the benefit vs. risk for their child.

One thing I've learned as we've established X's care team is that some providers don't believe in a child's ability to work through struggles. They want to cave too quickly and jump to the "easy" fix. All my mom friends who have tube-fed kids will attest to the fact that a feeding tube is NOT a cure-all. It comes with it's own set of complications and worries.

At this exact point is X's journey, a feeding tube isn't something that's needed or even being discussed. We and his team fully believe that in his case, he's capable of sustaining his nutritional needs and growth with the right support and the right medical food. However, we're open to the discussion of a feeding tube if at any point it becomes necessary and is in X's best interest.

As we've learned more about FTT, X's reasons for that diagnosis, and as I've taken a step back and trusted that X could do this...he HAS. He's making progress. That progress is a team effort. X is seen by over 20 providers who help us keep him on track. Among these, he sees Occupational Therapy, Physical Therapy, Speech Therapy, Gastroenterology, Surgery, Pediatrics, Developmental Pediatrics, Genetics, Neurology, Psychology and Nutrition. They work together as a team to ensure that X is developing and growing properly on his OWN growth curve. So far, he's doing well. We work diligently to make sure he's receiving proper nutrition and support.

FTT is a difficult diagnosis to work with. There are good days and bad days. There are wonderful gains and devastating losses. Some can be explained; some can't. Every day is different. Through all of it, I keep in mind that it's about quality instead of quantity. Changing my own mindset has changed X's. He can do this! I have faith in him. I believe in him. Although his progress is slow, he's gaining and growing. He's healthy. He's happy. He's thriving and making wonderful progress. He is definitely not failing to thrive!