Away with the Ponseti Boots & Brace

One of the things Mr Boy was born with, was a club foot. Observe: 

He went through a series of 6 casts right after birth and each one lasted one week, bending his foot into the right position. See Below:

 

It looked much better, but not perfect after the casts:

So then he had to wear the Ponseti Boots and brace for 3 months straight, 24/7 :

Since then and up until now, Mr Boy has worn the boots and brace every night of his life. 

We were pretty excited when the Orthopedic Surgeon said he didn't have to wear them anymore!! The foot looks great and now that he walks all the time, there is no fear that Mr Boy's foot will turn back in. Hooray! 

He went through 3 boot sizes (but I could only find 2 of them for the photo): 

I saved some of the clean casts too because I'm silly and they are so cute: 

Now they are just a memory... a keepsake in Mr Boy's ever-growing box of medical memorabilia.

I thought about putting them in a shadow box someday for Mr Boy to keep, but I can almost hear him now, "No thanks Mom, thats weird." :)

Animal sounds and Ball tossing skillz video

The Joy of Swings and Baths

Have you ever had one of those huge, defining moments in your life happen and everyone around you just kept on going with life like nothing happened? Well I had two of those moments go by recently:

Mr Boy has always been a slightly timid guy, but mostly because of the first 6 months of his life, 3 of those were in the hospital and the 3 months after that were spent in and out of the hospital for stays or visits multiple times a week.  This would make any smart kid realize that anything and anyone outside of home or mom & dad = very bad news. So I determined that Mr Boy was just fabulously smart to come to the conclusion that he should be seriously guarded and freaked outside of our arms. Thus the prospect of putting Mr Boy in a fun, fabulous, exhilarating baby swing at the park was a big mistake. He has always hated the sight of swings, probably likening them to torture devices, after all he's been through. So, you'll understand when I tell you that two weeks ago, when Mr Boy happily allowed me to put him in the park swing, that I was flabbergasted to say the least. And do you want to know what everyone else around us at the park did??? A whole lotta nothing! They kept on as if there was nothing special going on here at all, while I wanted to break out in song and dance and become the star of my own musical entitled, "Mr Boy Swings!" But there was no applause. So Mr Boy, David and I reveled in our victory to the sounds of Mr Boy's giggles, which is better than any musical I've ever heard.

The second moment like this came this past week as well, when I tried to put Mr Boy in the bath tub. We have not given Mr Boy a real bath or put him in water (aside from the 2 times I tried when he was first home from the hospital) up until last week. The water created too many sensory issues. So, after weeks of water table fun and getting him to play in the tub when it was dry, the day came last week when i got in my bathing suit, filled the tub with water and hopped in. I put Mr Boy in my lap, and he played timidly, yet happily for 45 minutes before we got out due to my numb legs and achey bottom. I looked around, but there were certainly no news crews documenting this monumental occasion. So we carried on anyway and have spent almost an hour in the tub every day since. Mr Boy still won't let me move him from my lap, but I am sure one day soon he will venture from my lap and play independently. Either way, we are just so thankful for these little blessings.

It's so fun to see Mr Boy at peace enough to let his guard down and enjoy the small things in life.

Mr Boy picked up his bottle and monkey and climbed into our friend Tina's arms...
Tina has officially entered Mr Boy's circle of trust along with only mommy and daddy.
Tina didn't want to move a muscle for fear of ruining the moment. lol.

Limitless

Since before Mr Boy's birth, I'm been limiting his potential with my thoughts. Throughout Mr Boy's life, I have preferred to expect the worst and be pleasantly surprised by the outcome instead of hope for the best, and be painfully disappointed when the truth comes around. There is still just so much we don't know About Mr Boy's future or the way his organs/spine/ligaments will choose to behave... but one thing I have recently decided is that we will not let any of it limit anything or any goal for which Mr Boy chooses to aim.

You are probably thinking, "well duh," haha, but it hasn't been that easy these past 2 years. There is something strangely comforting about self-pity and whenever I would see healthy kiddos living life to the extreme. I'd think... well Mr Boy will not get to do that, or that, or this, or that thing they are doing over there.... In fact, David and I already determined Mr Boy will be a musician because we figured he probably wouldn't be in contact sports, or anything involving running, swimming, etc... How silly is that??

Watching 10 minutes from a re-run of the movie Soul Surfer, and just about crying my eyes out, is what kinda wrenched me from my negativity and into reality. If you don't know the movie, its about Bethany Hamilton, the young surfer who lost her arm to a shark and still surfs professionally. It was like the cloud of pity was lifted and for the first time I could see plainly that Mr Boy could seriously do anything in the world he wants to do and David and I will do anything in our power to help him accomplish any goal.

Then this week after watching the Olympian, Oscar Pistorius (who has no legs below the knee) and hearing about his mother who spurred him on to greatness, i was exposed for the complete ninny I have been. When the olympian's brother went outside and climbed a tree, his mom didn't say, "here's a cookie, I'll turn on the tv and pull up a chair for you." She said, "get out there and climb with him." She is my hero. I complicate things when I try so hard to protect and shelter Mr Boy, not wanting to push him too hard... but the things I am afraid of are silly and most of the limits Mr Boy has were created by me and my own fears, not actual physical limits.

So now it's out there... I've said it and if you are to this point of the post, you've read it too, so you can hold me accountable. :) Yeah, we'll still start Mr Boy in music classes, but not out of fear, just because it will be fun and good for him.  Whew, it feels better to get that cloud of pity and negativity out of our house. I pray all the time that I will be a good mother to Mr BOy and I am so thankful that I learned this lesson before I my false limits affected him. Thank you Lord!

A dear friend's blog post

Sabrina is one of my great friends from high school. Not "Great" in the way that friends talk all the time or see each other frequently, but "Great" in the sense that she is one of those friends you never want to lose, even if you only talk once a year, or only see once every few years. She is "Great" in that she has the personality which draws you, a precious heart and solid faith. She is a prayer warrior. What I remember about her the most from high school is laughing, laughing and more laughter. When I think about her now as an adult, I think about how she prays. Sabrina has a cute, insightful blog called Sabrina Sayings where she recently posted a blog mentioning Mr Boy. I needed this post.

Sometimes I lose sight of what the Lord has done in our lives because we are right up in it, and forget how grim Mr Boy's life looked in the beginning and just how far God has brought us. I need reminders like this to be reminded to fall on my face before the Lord and worship Him for his goodness and mercy. There is no way to explain my gratitude for these words. Please enjoy this sweet, sweet post.

Sabrina's Sayings

The Business of Eating

I talked to our Occupational Therapist about my lil 30 hour tube experiment, where we tried to feed Mr Boy without the tube in his nose. I was hoping she would applaud my efforts and then give me the special key that I had been missing so that this month it would work seamlessly. Unfortunately, she explained to me why it didn't work and why it probably never will. :( But its ok. I am a very logical person so the core of my frustration came from not understanding why he wouldn't just eat and why we couldn't turn his pump up and run the formula into him faster. But she explained it to me in a way that makes perfect sense and now that I know what to expect and why these expectations make sense, I can be less frustrated when this process takes years instead of months.

You see, we are trying to get Mr Boy to be able to take (through the tube) 7oz of formula (almost a whole bottle) in 30 minutes, which any normal baby can do easily. I forget Mr Boy is not "normal" and expect his tummy to expand quickly and just do it. However, in 2 months he's gone from taking 7oz gradually over 2 hours to taking it over 1 hour and 45 minutes. Not much of a difference really, but the faster we try to get him to take it, the more he pukes here and there, and we take a step forward and two steps back. The therapist explained that not only does Mr Boy's tummy have to adjust, but his whole digestive system has to adapt.  The NICU "confirmed" after just a few days of Mr Boy eating well as a baby, that he would eat just fine and his intestines were long enough to be fine, but days after releasing Mr Boy, he began the reflux that persists today so I guess it still could be his short intestines in play here.

I don't know how I forget these things, but since Mr Boy is just a regular little kid to me, I easily forget that his body can't digest what other kiddos bodies can in the same amount of time. So in conclusion, I guess I finally agree with the doctor, that this will probably take years to tackle. I can be content with the tiny progress if tiny progress makes logical sense. I just have to adjust my expectations to match logic.

This morning I had renewed energy to feed Mr Boy. I sit him down and have him "eat/play" with food every day, but some weeks are better than others. Sometimes he will slightly chew and somewhat swallow bits of food and other weeks he will only hold it in his mouth for a while, then spit it out and hand it back. Mr Boy has been obsessed with gold fish lately and has a hankering for ranch dressing. No eating, mind you, just dipping and licking. So I got in a rut of offering him only fishys with ranch and the occasional slim jim. :) "Bold Flavors" is the phrase his therapist uses to describe what his for palette should consist of. And Mr Boy can easily swallow foods the consistency of apple sauce but refuses to chew items as hard as gold fish, so I went a little crazy buying products with bold flavor and mushy consistency to try and ease him into chewing.

At one time I planned on only feeding my kids healthy foods, but when the going gets tough, one will try anything. Thus, we have digressed:

The only issue is that even if Mr Boy takes a nibble, I have to finish the rest of it off myself! Who am I kidding... I can't complain! :) yum!

Mr. Boy walks!

Mr. Boy took his first two tiny steps June 7th and has been working on mastering this art, with passionate vigor, ever since.  He can now walk the length of the living room, turn the corner, and go halfway to the dining room before falling! And to think... we didn't even know if Mr Boy would be able to walk, much less walk so well! Praise the Lord!

excited that he can balance without holding on

The downward dog yoga move.

He can push his walker to the end of the block!