Crooked

Wow!  I just realized I haven’t updated my blog in 2016!  I’m a dreadful blogger!!  Good thing this isn’t my full-time job!  Not to say that things haven’t been happening though.

In December, Chad and I went to look at a couple houses purely out of the sake of curiosity.  Well, we caught the moving bug and bought 3.5 acres in a great location.  Much closer to my work, some room to breathe, and a really great school district for my boys.  Not to say that where we were wouldn’t have been great, but when you have two kids with special needs, their education becomes ultra-critical and I believe we are going to be in the right place for them.

We are building a house on our land and it should be finished in the beginning of September.  In the meantime, we sold our house on the 9^th showing and are now living in a tiny apartment in Fort Wayne.  Apartment life is not great, but we are so much closer to everything, including all of Gabriel’s doctors, that we really can’t complain.

The other reason I haven’t updated my blog in so long is because I thought we were finally going to have a year with nothing to do.  We went to Gabriel’s cleft clinic in March. His doctors remain concerned with his speech and wanted to do a minor experimental surgery to see if they could make it better. My mother’s intuition said that with 9 surgeries in 3 years he’s had enough, so I asked if we could wait a year and address the palate and repair his lip for better functionality before he goes to kindergarten.  Our surgeon said that he trusts mother’s intuition more than anything else, and if mom says he’s had enough – he’s had enough.  So –I thought we were in the clear.  Not so much…

If you recall from my last update in November, we had gone to St. Vincent’s to have a slight curve in Gabriel’s spine checked out.  At the time, the curve was 17 degrees and the doctor thought it wouldn’t get worse, but wanted to do an x-ray every 6 months to be sure.  Good thing we did.

In May, the curve changed to 20 degrees and is now curving and twisting at the bottom instead of just slightly at the top. I was completely devastated by this news. I just knew that when he said it probably wouldn’t get worse that he was wrong. We’re talking about a kid with the largest cleft palate our surgeon has ever dealt with in 25+ years of repairing palates.  Gabriel doesn’t do anything small!

So now what? Today we went and picked up Gabriel’s new scoliosis brace that he has to wear for 16 hours a day. The objective is to stop the curve from getting worse as the brace will not correct the curve that has already occurred. If the curve gets to 40-50 degrees, we will then have to start talking about spine surgeries to have metal rods put in and vertebrae fused together. Given that the curved worsened in just 6 months and the horrible internet says that in cases where scoliosis presents itself in such a young person, the brace won’t help. I hope the stupid internet is wrong.

Gabriel does not like the brace, as you can imagine.  I’m including a picture below so you can see how huge this thing is. Over the next week, we are supposed to work on getting him to sleep in it and eventually work our way up to wearing it throughout most of the day as well. He didn’t seem to mind it when we were in the prosthetic office, but getting him comfortable in the car was just awful. Imagine not only being stuck in a booster seat, but also not being able to move your upper body at all.  He couldn’t reach the window control to put his window down and cried the entire way home.  I expect tonight will be a very long night.

It’s funny when these things happen the thoughts that run rampant in your mind. I know I’m going to lose readers when I say this, but the continual crap that keeps happening to my baby has made me a bitter, angry woman. I pray to a god every night that I am just not sure is listening. I’m sick of being forced to believe that everything happens for a reason and that He has a plan for us. If He has a plan, I really wish he’d leave my boys out of it. If bad stuff has to happen, I want it to happen to me. I can take it.

It’s incredibly unfair for a child who can’t speak intelligibly not matter how hard he tries to not only have scars on his face that will always draw attention, but is now strapped with a full upper body brace that he will likely have to wear until he is done growing and will instantly mark him as different. I wonder how many people will give him a chance and get to know the beautiful child he is without seeing these things that make him different first.

All I know is this hurts.  He’s had to endure more than any child should and it doesn’t appear it’s going to stop any time soon and I just can’t understand why.  Why him?  Why do my boys have to face incredible challenges?  When will I get answers?  When will we all be able to make peace with the lives we’ve been given?

Don’t get me wrong. I am so thankful that he (and Ethan) are otherwise perfect in every way, but God, what I wouldn’t give to have to worry about how I’m going to get them to all of their extra-curricular activities rather than getting them to doctor’s appointments and trying to figure out how I’m going to pay their bills.

The next x-ray for his spine is back at St. Vincent’s in November. In the meantime, we’re going to get him adjusted to life with a brace, keep up his speech therapy, and take him camping as often as we possibly can. Next week we are taking the RV to Destin, Florida to introduce the boys to the ocean.  I’m optimistic this trip will provide just the break we need from the madness.  And maybe we’ll all improve our tans at the same time!

Until next time…

Someday never seemed so far away.

It’s never been a secret between God and me that I have issues with blind faith.  I’m the type of person who must be in control at all times.  Always have been.  I like to make decisions.  I like to lead the way.  And I like to control destiny.  At least I like to pretend I do.  Let’s go back, shall we?

We took Gabriel to Riley Children’s Hospital in October.  Holy moly – that place was HUGE!!!!  Although, I must say, their gift shop was a little disappointing.  I am a frequenter of gift shops and was really looking forward to seeing what a children’s hospital would have, but it was actually fairly standard.  Anyhow, taking Gabriel to see another cleft team was enlightening, to say the least.

We have never questioned the path our cleft team has taken, but to hear how differently another team would have done things certainly made everything I thought I knew become everything I never knew.  The Reader’s Digest version is this – the plastic surgeon wants to fix Gabriel’s lip and, in the future, repair the hole in his palate.  He indicated that he would not and could not recommend any further surgeries that might help his speech because he leaves those decisions up to the speech pathologist. 

The speech pathologist was amazing!  We wish we were physically closer to her so that she could work with Gabriel, but she did provide a fair amount of information and her contact information for his therapists here, so that’s something.  She identified that Gabriel is using an ‘N Substitution’ in his speech.  This means that he has taught himself to replace nearly every consonant with the letter ‘N’.  Go ahead and try it.  What you’ll learn is that using ‘N’ for every consonant does not work and certainly makes speech unintelligible.  She indicated that she would not recommend any further surgeries for speech purposes until we retrain his brain to stop doing the ‘N Substitution’.  When I told her our goal was to have his speech intelligible by kindergarten, she said that was certainly the hope and she would like to see him back in six months to make sure we’re doing the right thing by not having any additional surgeries right now.

What we were left with after this experience was a surgeon in Indy who wants to fix Gabriel’s lip now and our surgeon who wants to wait to fix his lip when he’s a teenager, unless he gets made fun of at school.  Chad and I had many discussions about what should be done.  We also talked with our surgeon and I told him that I don’t want to wait ‘until’ he’s made fun of, because, to me, that’s too late.  Once a child becomes an outcast, it’s nearly impossible to come back from that.  Sadly, kids are cruel and Gabriel’s going to struggle enough with his speech that he doesn’t need a lip that won’t move added to the list of things kids will tease him about.  Our surgeon told us to pick the time and he’ll do the lip revision.  He just warned us that with bilaterals, it’s highly likely this won’t be the only lip revision as it will need additional revisions as he grows.

We told him that Gabriel had a series of appointments coming up related to his spine and possible stroke activity, so we would not be making any decisions until the results of these appointments are known because they would certainly take precedence over any lip revision.

That brings us to the other appointments.

Gabriel had 2 MRI’s a few weeks ago.  The first to look at his brain for signs of a stroke and the second to look at his spine to see if there was anything there causing the curvature.  The results were – no sign of stroke and a normal spine!!!!!  There was, however, an air cell in the bone around the brain that causes our neurologist no concerns, but we will have another MRI in six months to take a look at it again, just to be safe.

Armed with that, we went to St. Vincent’s on November 11^th to see Dr. B – a pediatric orthopedist – about the curve in Gabriel’s spine.  He indicated that the curve is fairly small and that ‘odds are it won’t get any worse’!!!!  We will be going back every six months for x-rays though just to keep an eye on it and make sure it doesn’t change.  Great news, right?  Kinda. 

The question now is, if Gabriel hasn’t had any strokes, there are no visible reasons for the curve in his spine, and it’s not likely to get worse, then why is his left side still so weak and his gross motor skills still behind?  Dr. B confirmed that the curve is what would be causing his left shoulder to hang lower than his right, but it is not what would be causing the delay and weakness.

So now we head back to Dr. K, the pediatric neurologist, on December 18^th so she can determine what tests are next.

We also had Gabriel’s annual IEP (Individualized Education Plan) meeting a week or two ago.  Everyone there confirmed the things we already know – his speech remains unintelligible and they are looking for other ways to help him communicate his needs, his gross motor skills have improved, but still remain delayed, and he might just be the funniest kid anyone has ever known!  His PT said that some of his gross motor delay might just be happening for no good reason and it will work itself out in another year or so.

Blind faith.

The Indy speech pathologist ‘hopes’ he will have intelligible speech by kindergarten, Dr. B thinks his curve shouldn’t get any worse, the PT thinks there could be no reason for the delay and things will work out.  What is that saying about having hope in one hand?  Doesn’t it somehow end up with poop in the other???

Nothing about this is controllable.  We are choosing not to teach Gabriel any additional sign language because the ‘hope’ is that he will suddenly be able to speak clearly.  We are not adding any additional PT because the ‘hope’ is that his delays will fix themselves.  I fear I lack the blind faith that these things will, in fact, work out.  Everyone has been saying for four years that God has this plan for Gabriel.  Everything happens for a reason.  You just have to have faith and know that someday it will all make sense.  Someday. Someday.

Someday never seemed so far away.