Skip to main content

The Nuts and Bolts and A Bucket List


Here is the recent lowdown on our little lion man. (Long post, sorry, feel free to just look at the pictures...)

He is exactly a month post-op today, and his recovery so far has been excellent! Some days it is hard to believe that he just recently had his head peeled open like a orange...  His hair is growing in over his scar and the dissolvable stitches are shedding out. Even though the surgeon said he nipped and tucked the loose skin on his scalp from the last surgery, he still has that silly cowlick. Actually it's more like a cow chomp. The hair is even a different texture there. Weird. But in a good way...



Last week we briefly met with his Neurosurg, who was as always, thrilled to see him. She said that the swelling around his eyes might take another month or so to dissipate. We can definitely see an improvement in his right eye and side, though his left side is still puffy. This just underlines to me the fact that his left side is weaker. It is his left that gets involved in those monster seizures, and he always learns something new on the right side first. His left eye also is affected quite a bit more since the surgery, so this week I will try to get a hold of his opthamologist to see if we can that eye alignment surgery scheduled soon. Well, soonish anyway... 



It is getting to that time when all of Leo's therapists get together and review his case to help them plan out the goals for the next 6 months. This is little man's current place: He has an official diagnosis of Hydrocephalus: NOT hydran where the brain is absent, since Leo has a fully formed cortex. (all part of last year's miracle. Click here for the post on that.) He has a programmable VP Shunt installed to drain his excess cerebral spinal fluid from his brain. And so far, he only has needed one shunt revision when he was 3 months old or so, and then a brand new shunt system put in last summer during his cranial reduction surgery. He has had two of these reconstructive plastic surgeries now, and hopefully, won't need anymore. Because his brain it is slightly abnormal in formation, and he is supposedly missing his Corpus Callosum, (Read about ACC here) I say supposedly because he doesn't show much sign of that, other then having a slight right sided tendency, and this is Leo after all) he is subject to "simple partial seizures." But the only thing not "simple" about his seizures is that they do not stop on their own and require some heavy duty medical artillery to stop them. Not fun. However he takes Keppra twice a day to keep that under control though he does get breakthrough seizures when he is sick or feverish which result in an ER visit. (Sad face...) In other areas, physically, he is super healthy. Since he quit the bottle his appetite his improved and he has gained almost three pounds since the surgery in Feb. He is now 23 pounds and 39 inches long which puts him in the 5th percentile for weight and 20th for height.
He is involved in the following therapies: Physical therapy, Speech therapy, Play therapy, Vision therapy, and on top of that is also followed by a dietitian. These are all weekly in home visits so we stay pretty busy!


But the fruits of these labors are many! Several of you have recently asked about his development, so here is the stats on his milestones so far. Leo, as most of you know, spent the first 10 months of his life flat on his back, because of the weight of his ginormous head. Development happens in stages that are triggered one after another, kind of like the rungs of a ladder; you can't get to the top unless you go pull yourself from rung to rung. With babies, that first triggering rung of the ladder starts with head control. Once the babies get that, then they can start to progress to other things. Our little lion was grounded (no pun intended) until the surgery last summer which drastically resized and lightened his skull and made it possible for him to achieve that desired head control. Once he got that, Leo just took off. He has now, since last summer, gone from 0 to 12 months in his developmental milestones. He is sitting/crawling/pulling up to stand/cruising/eating solids/blabbing/ and exhibiting very normal toddler behaviors. Yeah he is still a little delayed compared to his 18 month old peers, but in the grand scheme of things, this is pretty trivial. I mean really, the little dude was supposed to be in a vegetative state until expiring at 6 months. Delayed? I'll take it!


Leo rocks.
And he isn't going to stop there. The first item on his 2012 bucket list is walking! There doesn't seem to be any reason why he can't learn to walk. He already tromps around the house with his hands held, happy as a clam. The list goes on to include catching up to all those milestones appropriate for his age, and then to keep going! This means that he will be enrolled into all the early intervention therapies for as long as he needs it, and then switching over to school run therapy after he turns three. It will be hard to say goodbye to all his current therapists... They feel like they are part of the family.

I really have no idea why my camera phone did this crazy wild thing on the side of the photo...technology, just when you think you have control...it can turn into a evil robot that takes over the world...or at least ruin your pictures...

So at the end of each day, we all give thanks, over and over, for the blessings in our lives. My back doesn't give thanks so much, but the rest of me is so incredibly grateful for the two monkeys bouncing all over the place.


And even though when I lay the little lion down for to sleep, I know that I will be up several times in the night to listen to his breathing and check his limbs for seizures, I know that the future is still probably uncertain in regards to his development, I know that there will be other hospital stays and trials, but I also know, that everything will somehow come right. Because, he is after all, Lion hearted, and he doesn't mind sharing that.


Thanks for reading! Thanks for praying! And thanks for loving our little guy.



Comments

  1. Goodness gracious I just want to squeeze him! I am so thankful for all the blessings God has given you with Leo. Mostly I am just thankful for Leo himself.

    ReplyDelete
  2. Leo is so adorable! I'm glad he is doing well and will continue to pray for him!

    ReplyDelete
  3. Yay Leo! I was wondering how he was doing with walking. :)

    ReplyDelete
  4. such lovely photos! thanks for the update! Glad he is doing so well! He's so cute!! :)

    ReplyDelete
  5. All of you are nothing short of miraculous and you give me great strength from reading your posts. Thank you.

    ReplyDelete
  6. I love all your posts - long, short, happy, sad, hopeful, desperate. When one part of the body rejoices, we rejoice !!

    ReplyDelete
  7. Thanks for all the pictures...the kids (well me too) love seeing them. Thanks for the "long" post I really love reading it! Leo really does know how to pull heart strings! BTW Leo is the same size as Luke!=-) With warmest thoughts! Emilee Smalley

    ReplyDelete

Post a Comment

Popular posts from this blog

Lost In Summer

It has been a long time...maybe the longest since I have written to you all last. This blog has meant many different things to me over the past seven years, in fact, it has taken as many different manifestations as its subject matter, Leo the little lion! Not so little anymore, in a couple weeks he will be seven years old.  And so will this blog!  It is amazing to think back to the frightening beginning of it all, and to realize that never in a hundred years could I have pictured myself now, sitting and typing this post at my sunny kitchen table, in my own house, while the early morning sounds trickle in from the open porch door and mingle with the voices of my children in the other room. Not one child, as we all thought seven years ago, but two.  Seven years ago, Leo was not going to live to his first birthday. He was not going to be able to talk sweetly to his big sister, as I hear him doing right now. Though I'm sitting in the other room, I can picture them both clearly; his s…

For The NICU

So you guys know that September is the NICU (Neonatal Intensive Care Unit) awareness month right?  Yeah, I didn't know either.  Every month there is some disease or disorder that we should worry, promote, and be aware about...so after awhile all that awareness stuff gets tiring... But this is the first time I've heard of an awareness month for a place, rather than a physical condition. What's up with that? How come we need an awareness month for a section of the hospital? We have an awareness month for breast cancer, not the cancer ward itself...so why the NICU? I'm pretty sure there is a preemie dedicated month, and one for every other condition that may have put the infant in the NICU in the first place, so why the preferential treatment? After thinking about it for awhile, the only reason I could come up with for the need of this awareness of a place, is that the place itself has inherent issues that people (especially potential NICU parents) should be aware of. No…