A LONG time since we've updated!

It's been a really, really long time since I've written an update. I don't even quite know where to start really so I guess I'll just jump in and see where this goes!

X is now 5 years old. FIVE!!!!! I can't even hardly believe that. Yet here we are five years in to parenting a child with a bunch of needs and he's doing amazingly well!

Things X has done since our last post: 

• Gone to Preschool
• Graduated Preschool
• Gone to Pre-K
• Graduated Pre-K
• Started KINDERGARTEN! 
• Crawling in quad position (hands and knees)
• Cruising around furniture
• Independently standing against walls
• Standing independently for about 3 seconds with no support at all!
• Reading! Yep...really! Reading!
• Using a manual wheelchair
• Starting to use a gait-trainer more for short distances
• Can throw a ball 
• Can hit a ball about 50% of the time it's thrown to him
• Lacing things
• Using zippers
• Can put his own socks and shoes on AND can take them off by himself
• Brushes his own teeth
• Combs his own hair
• Speaks VERY well
• Has had new diagnoses
• Is about to graduate from one therapy program
• Can tall kneel without any support for up to a minute
• Can "take a knee" for 30 or so seconds at a time and be totally stable with zero support
• Drawing basic shapes and beginning to form some letters
• Is working hard
• Is growing big (40 lbs and 3 feet 9 inches tall)
• Buckles his own seatbelt on his carseat (with parental supervision and verification of course)
• No longer uses a crib
• Has a big boy bed
• Can get in and out of his big boy bed all by himself!
• Can tell time

You might be getting the idea that he's changed a LOT! He really has. We should also probably stop calling him Little X now because well - he's not little anymore! He's a big boy!

We've also made a few changes to how we're approaching a few things. The biggest one is with X's schooling. While we did try preschool/pre-k and it was okay, it wasn't a great fit. X still has a very minimally functioning immune system. He missed more days of school both years than he was able to attend due to illness. Not kidding at all when we say that if there's an illness within 10 miles, he'll catch it. I WISH I was kidding; but really, truly not. He really does get sick SO easily, gets much sicker than kids with a "normal" immune system, and stays sick for a really long time. For example: In preschool he got sick in November and remained consistently sick until April. November til April. With only 3 or 4 days at most between illnesses. Once he gets sick once, he will continue to get sick and stay sick because his tiny little immune system is stressed and overworked.

This led us to ultimately deciding to homeschool X going forward. It's been a fun thing to do and he loves getting to stay home. One of the new diagnoses we've learned about in the past two years is autism. It's different for every child and how each child ultimately gets that diagnosis is very different. Many times, there's no obvious cause. For X, his brain bleeds ultimately led to his brain being physically rewired which led to the autism diagnosis. If you're feeling bad for him, please don't. X's life is no more or less than it was prior to this diagnosis. Instead, we've embraced it with open arms and are tremendously thankful for all the additional supports and therapies this has opened the way for. That diagnosis is also why he didn't love preschool and pre-k as much. He doesn't read other kids well. He doesn't love loud environments. He has a lot of anxiety and other diagnoses that really make it hard for him to be comfortable in a classroom. So, he's a big fan of being at home!

We've made tremendous strides with his education. We do our work every day and enjoy outings with other kids both with and without special needs when weather, illness forecasts (which bugs are super active) and his health allow. He loves that in small doses, but not all day so homeschooling has been such a gift for him. X is thriving and growing by leaps and bounds under our care at home. We also don't have to worry about how to juggle appointments, medications, therapy sessions, etc while he's attending school in a more traditional setting.

We've also chosen - at the advice of his medical team - to make some medication changes. He was diagnosed with asthma a year or so ago. We've also suspected he probably had chronic lung disease as well and it turns out we were right. So, we're on a daily controller medication and a rescue/illness medication as well. Since making this change, X's lungs get a lot less sick and stay sick for a shorter period of time. Notice I didn't say he doesn't get sick? Yeah, he still gets sick. He just gets...less sick than he has in the past but still is much sicker than other kids.

There's more to X's story now that we've also learned but I'll address some of that later on in another post.

Suffice it to say that all of this and more has led to my life being a little LOT busier than it used to be. The end result has been my lack of writing about our day to day adventures. Right now, I can only say I will do my best to try to write a new post monthly. If you know me outside this blog, you know my schedule has become pretty jam-packed with stuff! If you don't suffice it to say that my schedule makes that of most 80-hours-per-week-business-professionals look downright empty!

My family, our kids, the day to day needs of everyone and now being the education provider as well has always - and will always - come first. However, I will try to do better. That's the best I can promise right now. :)

Ok, off to do more wife/mom stuff.

Til next time... 💙

So many thoughts....

I've started and stopped and restarted this post SO many times... I've never quite found the right way to put my thoughts and feelings down, but tonight I'm just going to go for it. If I ramble or don't make complete sense, please forgive me. :)

If I said that being the parent of a child with special needs is easy, I would be lying. It's challenging. Parenting as a whole is a challenge! It's challenging whether your child has any special need, multiple special needs or no special needs. Children don't come with instruction manuals or a starter's guide or a page that says "Begin here...". There are no maps, no directions, and every child is unique in their needs - special or more typical. Yet admittedly, having a child with special needs is made more challenging - perhaps even hard - because you're thrown into a world that's filled with medical terminology, specialists and therapists who each have a specific role to play.

As the parent of this child, you have to try to keep track of each of these team members, their roles, and coordinate everyone's efforts. You have to become extremely good at budgeting, scheduling, time management, and medical care. You get a crash course in every specialty and therapy while becoming well versed in medical terminology and shorthand. I sometimes joke that I expect degrees in every specialty and therapy field by the time X turns 18. I'm only half joking though...kinda. It's amazing what you can learn (and retain!) when it's a necessity.

This sounds like it'd keep you plenty busy, right? Of course! But, there's more to it. You see, your child still needs to be a CHILD! They need to have childhood experiences. The difference is that now, you will have to figure out ways to adapt those experiences to your child's abilities. You still need to take time for yourself in all of this because having a healthy, happy parent leads to having a healthy, happy child. You need to take time for other relationships in your life - marriage, parents, siblings, friends, etc. It's a hectic, challenging life, but it's not all bad.

We see lots of posts on various sites about top ten lists for what it's like to be the parent of a child with special needs, or lists about what parents give up, or what struggles a child with special needs goes through... the list goes on and on. Many times, those posts hit home in some way or another. There's sometimes something in them that we/I read and think "Oh wow... they're describing us!" Yet, despite how some of the things in those posts hit home, I can't help but look at our lives...at X's life...and see so much GOOD!

It would be so incredibly easy to be angry or bitter. It would be easy to blame ourselves or ask why us or why him. It would be easy to see all of the negative aspects of the challenges that X has in his life. Yes, it would be easy...

The negative isn't what we see, however. We aren't grieving about what might/could/should/would have been. We don't ask why because...well, because it just doesn't matter. It won't change anything. We aren't angry or bitter about being parents to a child with special needs. We aren't angry or bitter that his life path is different than what we'd hoped and dreamed for him.

Instead, we're CELEBRATING every second we get with X. We're CELEBRATING every milestone and accomplishment. We see the beauty in his life. We see his beautiful smile, bright eyes, easy laugh, cheerful disposition, strength, determination, good nature, caring heart, gentleness, empathy, and enormous capacity to love others. We see the happy spirit that is our son. With so much good in his life, the challenges aren't so difficult.

We don't see ourselves as heroes or martyrs because we care for our child who happens to have special needs. We see ourselves as parents who are doing our best to provide for our son. We aren't missing out on life. In fact, we've been given a unique opportunity to witness what can only be described as miracles multiple times.

We don't see X as a victim of circumstance...or as a victim at all. The truth is he only knows life the way he lives it now. He doesn't miss not having various skills because he never had them at all. Whatever skills might be behind or missing don't stop him. He lives a fun, full, joyful life! Most importantly, X is not alone in his struggles which makes a tremendous difference. He is loved immensely by people all over the world who are his cheerleaders,..but most especially by his family!

What we DO see...is hope. Every day is full of hope. There's so much good...so much joy...so much love in our lives; in X's life. We will never forget the day that doctor's told us what they anticipated X's abilities and quality of life to be. We both instantly made the choice to not give up. We told the doctors, "We don't give up that easily." We don't. Neither does X. And neither should you.

No matter how hard a challenge seems to be...no matter how easy it would be to be bitter and angry...always, always have hope. The rest will work itself out.

So Many Changes!

It's been a L O N G time since I've written anything here. It wasn't intentional. Life with a child who has special needs is so unbelievably busy! There have been a lot of changes for X in the past 7 months. (YIKES! Seven months since my last entry?! I promise I'll try to do better!).

In September 2014, we headed back to the all-too-familiar hospital for X's next round of surgery. This time, he needed an inguinal hernia repaired. I've linked you to some information about what an this type of hernia is if you're interested in learning more. Anyway, this had needed to be done for a while, but X was being his usual trooper self and not really letting anything slow him down.

We were going to combine this surgery with his abdominal surgery done in April 2014. But, both we and his team felt like the additional time under anesthesia and the additional incision to recover from would be a lot. It turned out to be the best decision to wait. Recovery from that abdominal surgery was hard for X.

In addition to repairing the hernia, the time had also come to do a surgery to correct the eye crossing that X had. There are a couple of causes for a child's eyes to cross. I'll get into this in more detail in another post. The short version is that sometimes it's a physical problem and sometimes it's a neurological problem. In X's case, the problem was (Is? Technically, the issue still exists. His body can just compensate for it now.) neurological and a direct result of the significant bleeds he had as a newborn. The technical name for the eye crossing is strabismus.

He had surgery first thing in the morning. He was the first child into the operating room that day. I guess that's one benefit to needing two different surgeons to do surgery for your child. Surgery took a little over two hours. X never does great after anesthesia. It's due to some other issues I'll talk about at some point in the future. Bottom line: he needs oxygen and lots of  after anesthesia is introduced into his system.

I was also so grateful we were in the hospital that first day because pain control can also be an issue. Luckily, there are better options for pain control when in the hospital than what is available for use at home. Keeping X comfortable is directly related to is oxygen needs and his recovery time.

He's all recovered now. His eyes are so much better. He can see better! The hernia is no longer an issue. He's also been GROWING! He's grown 3 inches taller in the past 7 months. In just the past two months, he's gained a whopping seven pounds!!

X is now combat crawling quite quickly. He can sit up completely on his own now, but he does still need to use his hands to keep his balance. He's getting better and better. It's just about his body learning how to find that perfect center for balancing. He's started to take steps if we help hold him up. He can feed himself from a spoon...although food is still not something he really wants. He still drinks mainly bottles, but he's getting adequate nutrition, so we'll get rid of the bottles at some future point. I don't really care when that happens. X just recently got a gait trainer which is pretty much a super fancy walker. It helps hold him up so he can learn to take steps and be independently mobile.

X is also talking up a STORM! He talks about anything and everything. He remembers new information very easily and has learned a number of things that impress not only us, but his developmental team as well.

Finally, X is already 2 1/2 years old. He'll be 3 before we know it...or are ready for it! He has taken 2 by storm and loves all the changes being a toddler brings. :)

So there you have the somewhat condensed version of everything X has been up to for the past 7 months. I'll probably write another entry tomorrow. I'm planning to anyway! There's a lot still to talk about and many more thoughts I have going through my head that I plan to share.
                                   

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.