baby steps....

What a difference almost four years makes. 

Here are Alex's AFO's (ankle-foot-orthotics)

and now on the right his HKAFO's (Hip-knee-ankle-foot orthotics)

For those unfamiliar with these acronyms,

these are all custom made braces that help keep a childs feet in the right position,

and when the child is older helps to provide support in standing and/or walking.

 Look at these itty bitty ones.

I didn't think to keep pairs, just one brace from in each size.

those first three are all just slightly different sizes.

I put a chapstick in the smallest one to give you an idea of the size.

The first one was from his NICU days when he was just a pound and a half.

In true Alex fashion, he continues to defy what all 

the "experts" predicted.

We were told to be prepared that Alex would likely hate his new braces,

that they would be cumbersome, heavy and awkward,

that he'd likely be fearful in them, especially at first.

Honestly I don't think any one was trying to change our minds about

our decision in trying them, just trying to help us be realistic.

But actually both of my boys tend to be the exception to the rules.

I laugh when I hear a doctor say "well its not common but....." because

what follows the "but" is usually what our boys do--good and bad :)

Alex has LOVED his braces from the first go. I mean truly!!!!

He was never hesitant, fearful, or even bothered by how much

his momma has to struggle getting his legs straight to get in them

(the cumbersome part was definitely true).

He ASKS to stand. 

Something he NEVER did in almost three years of using his stander.

Here he is the first time at home with them, reaching his play kitchen
for the first time without me holding him up to it.

and just a couple short weeks later.....

he's asking to walk!!!!!

Let me preface by saying that it is truly unimportant to Mark and I

if Alex walks or not. I know that might sound strange, but its true.

Years ago we came to terms with the fact that Alex was born the way he was, 

and truly a gift to us (as is his brother). It was critical to us that Alex

be able to get around in whatever way he could to be independent and that he be happy!!! 

When he was a year and a half old we found all of those things in his little speedy wheels. At that time he didn't have the core strength to hold himself up, even with all of his efforts and therapies, so we couldn't even consider any type of braces designed to help him walk. Honestly, when we saw how happy he was able to maneuver around in his wheels, we really haven't looked back since.

We'd revisit the options from time to time with his therapists and doctors but we didn't fixate on it. Alex was happy, thats all we needed (and still do).

These last six months in preschool, he has had an explosion of new skills,

developmental and physical. He's gotten sooooo much stronger. When

he started pulling himself to his knees for the first time, we were in awe.

When he started verbalizing wanting to stand, we talked to the right people

and got what he needed.

and now......

He's telling us HE wants to walk. 

This is brand new to us. 

Mark and I are really kind of standing back, 

keeping our expectations in check.

I truly don't know what his body will let him do 

but he's got his mind set on it. So its my job to do everything

in our power to help support him.

where-ever that leads.

His therapist has ordered him a walker just his size,

we are waiting for it to come in.

She explains we will try having the walker in front of him

and he will move the walker forward and use it as leverage

to swing his legs forward after it, and so on.

In the meantime, he's happy enough to have us

help hold him while he practices.

He's usually exhausted after doing a couple feet,

he rests/plays and then with the brightest smile

and the sweetest little voice looks at me and says

"mommy: I want to walk again."

It doesn't look like traditional walking ofcourse.

He is paralyzed below the hips and can't move his legs.

But when you hold him, you can feel EVERY muscle in his core

as he's telling his body to move forward.

He inspires me.every.single.day with his determination!

This isn't the best video but its the only one I have for now.

Standing for the first time!!!

Alex has been showing more interest in wanting to stand.

this is new for him.

He'll pull himself to his knees and says

"look momma, I standing"

so sweet.

We've talked the last couple years of whether we should pursue long leg braces.

but before now, he was so happy cruising along in his wheels

and honestly his trunk hasn't been strong enough to try braces.

We were also told that the braces can be pretty heavy, cumbersome

and that a lot of kids just don't like them. 

but here's this sweet little boy

telling me he wants to stand.

So Momma calls the doctor,

we get an appointment

we say lets just give these things a try

and the doctor agrees. 

I know someday he's going to want to kill me for these pics in his diaper

but.........

I'm just proud of what a champ he is!!!

smiles the whole time he's being casted.

Fast forward one week...

Here's our boy standing on his own two feet

for the very first time!

 He holds onto his Daddy for dear life at first

he does his nervous giggle

  but he's all smiles.

He shakes his head yes when I ask him if he likes them.

Nothing prepares you for the flood of emotions you feel

when you see your child standing for the first time.

I remember feeling that way about Nicholas.

something about those firsts.

But this is one of those firsts we really weren't sure we'd have.

It makes it just that much sweeter.

People have asked if he'll eventually be able to walk with these braces.

We don't know the answer.

When we first asked for these braces for Alex,

we just wanted to help him stand upright,

be eye level with his peers,

get closer to things to play, interact.

And also for health benefits, 

get his muscles/bones stronger.

Really anything else is just gravy.

But I saw my son in those braces,

I saw his face.

I think he can do pretty much anything!

We'll continue to take this road where-ever he wants to go. 

update and a video.

My mind has busy busy busy processing all of the information from yesterday's GI visit. I have received a ton of messages and private emails with information and support and feel truly blessed to all the people who have reached out. 

This surgery that is recommended is not life or death and for that I am grateful. It almost makes it a little bit harder as my husband says because it would be elective, leaving it up to us to make a decision to act or not act. 

It boils down to simply the boys for whatever the reason(s) don't take in enough calories to maintain adequate growth---on their own growth curve---no one is trying to put them on a typical growth chart, trust me-

My theories are simply that we know that they have slow gut motility (things move very slowly through their systems so they FEEL full), they were born soooo little and already way behind the ball when it comes to growth. Also we knew even in pregnancy that their growth had stalled giving them their first failure to thrive diagnosis which was "intrauterine growth restriction". We knew early that the placenta was having issues with blood flow so the hope was that this trend would reverse when they were born. But looking back, we've ALWAYS had issues getting the boys to feed. First it was said it was because they were so premature, then it was because they couldn't tolerate the early feeding tubes, then they changed formulas a few times, then they were too little to figure out the eating/swallowing/breathing thing, and then it was reflux. It was always something, never a sit back and relax while your baby ate but instead a battle of could we get them to eat more than a couple ounces. 

While the story changes slightly, truly we've been battling with them over nutrition for a very very very long time (their whole life really). In my mind I truly wonder whether something just went awry when the genes were being handed out, or maybe something else was going on with their little bodies at the same time their appetite center in their brains were supposed to be forming and it just didn't finish, I don't know. Maybe micro preemies or at least my two will not just be small but tiny. 

Also on my mind are all the medications that they are and have been on. From the very early days, they needed all kinds of machines and medicines to survive.  We understood from that time that for every possible benefit, there were more possible side effects, some long term. Does any one even know what all of those are? I don't think so.

Even almost four years later they are on asthma and lung medications daily. I looked at just one of those medications and it said it could impact growth. I called the doctor about this ofcourse. They said it shouldn't by itself cause failure to thrive, just long term use is thought to possibly cause shorter stature but they said more than likely only by a quarter of an inch, not what we are dealing with right now. And certainly the benefits of the medications are outweighing that. I've talked before about the boys chronic lung disease, also known as BPD. Its one of those long term side effects caused by the ventilators they needed the first couple months of life. People mistakenly assume when I get a little crazy about trying to keep my boys away from other kids that I KNOW have respiratory issues that I just need to relax and let their immune system build. To a point I understand that but its their lungs I'm trying to protect until they are bigger and can grow some more healthy lung tissue. The lung tissue that they have now is like cardboard and it simply can not expel mucous the way yours and mine do. The only cure for that is time. Their pulmonary doctor said their lungs will continue to grow for 5-7 years and its in relation to their overall body size, like any of your organs. So hmmmm, they have definitely grown healthy lung tissue but given how little they are, they still have quite a bit to go. In the meantime, their nebulizer treatments help keep stuff out of their lungs and make it easier to breathe when they do get sick. 

As usual, I digress. 

Back to the issue at hand, I can tell you that my husband and I are exhausted with the food battles in our house. It takes over way too much of the day to day when there is so much else to focus on. Today, I'm analyzing the boys food intake and schedule with new eyes. When feeding tubes were first discussed over the summer, we were all gung ho about offering them new foods, sneaking in extra calories, extra pushing of their high calorie shakes, trying new recipes, adding duocal powder to everything but at some point its hard to keep up the intensity so you don't realize it, but you start to drop off the intensity in favor of getting busy with other "normal" day to days. We just can't afford to slack off about this, and we did just that. 

Today we are back at researching high calorie foods and recipes, changing up their schedule a bit, decreasing snacks in favor of trying to get more bang for their buck at meal time, anything we can think of to get and keep the weight on. 

I've received a number of messages saying that the G tube is not the end of the world and trust me, as much as my stomach was tied in knots yesterday about it, I do get that. We (and the boys) will manage that just as we've managed a dozen other things. I understand that for some children, this IS the best option of getting sufficient calories in safely. It may end up being what one or both of my children need at some point but in my heart, I just don't think we are there yet.

I desperately want to try other things, and try them again if needed. I want to know that before we hand our boys over to a surgery, that in my heart I've done EVERYTHING else first. Alex has had six surgeries in his short life and has two more surgeries in his future that we know about (an atrial septal defect repair and a scoliosis surgery). Honestly hearing about the G tube was kind of like the feather that knocked me over. I'm just not there yet.

The boys preschool teachers and therapists have offered to really encourage on their end, even said I could send in the boys duocal powder and they'll add it to any morning snacks they have, etc. This is not a journey thats often understood by people who aren't dealing with it personally and you can feel pretty overwhelmed and alone while trying to figure it out. I am so thankful that we have such a team of people around us who are so willing to help. 

I also spoke to my boys pediatrician and we are going to try the appetite stimulant again. I don't feel like it did anything last year when we tried it and in fact I think it really keyed Nicholas up in a negative way but the pediatrician suggested maybe it will have a better effect now that they are a bit older and honestly, its definitely worth another try. We are waiting on the boys endocrinology consultation which won't be for another six weeks. The next GI appointment isn't until July so I feel like we have some decent time to see what we can get the boys to first. So send positive thoughts our way, because here's hoping!!!

On a completely different note, I took this a few weeks ago and I thought I'd share it because I just think I have the sweetest boys around. We still use a video monitor because the boys room is on the opposite end of the house as ours and heck, its just kind of hard to give it up, especially when you get to see glimpses like this. 

I had just went to turn it on and quickly got my phone to capture this for Daddy. 

Mind you, Alex is not one to accept help from his brother easily, at least in the face of mom or dad.

 Its always "no Nicholas, I do myself."

and my husband and I are careful NOT to let Nicholas think he is in any way 

responsible for caring for his brother any more than Alex is responsible for caring

for Nicholas. 

(other than the regular be nice to each other kind of thing). 

But I've always felt that there's a very special bond with these two and 

I think Alex lets Nicholas be the little Mr. Mom he is when we are not around. 

My heart smiles watching this, hope yours does too!