A beautiful mess

Where do I even begin? It's been a heck of a ride with our little Bug in these short 5 years, and it seems like we are only at the starting line.

When our second baby was born in 2006, she was wonderfully healthy, happy and beautiful, with giant kissable cheeks. Our first issue with her wasn't all that much of a big deal for us (or the pediatrician), but it sure freaked out anyone else who changed her clothes or diaper... After her umbilical stump fell off, she developed an umbilical hernia. Sticking way out, it looked crazy, but the doctor assured us that as long as it was still able to be pushed in, all was fine and it would eventually (most likely) fix itsself. And it did, by the time she was 2.

When she was about 6 months old, we started to notice that her head always seemed to be tilted to one side (beyond the normal "floppy head" of a newborn). The pediatrician diagnosed her with Torticollis and sent her for eye, ear and neurology referrals in search of a cause. All of those came back normal and it appeared that the Torticollis was caused by her scrunched position in utero. I took her to monthly Physical Therapy at Dayton Children's (45 minute drive) once a month until after she turned one, started walking and straighted up dramatically. She still tilts to the right whenever she's sleepy or sick, but only those of us looking for it actually seem to notice it.

When she was three, we had noticed a big difference in her speech abilities compared to the other kids in her daycare. She had an obvious delay in her speech, but what to do about it? The pediatrician referred her to Speech Therapist at the local hospital and we found a really wonderful one who (after a while) finally diagnosed her with "Apraxia of Speech". Basically, it means she knows what she wants to say, but her brain has trouble sending the right signals to her mouth to form the right sounds. She has been going to weekly speech therapy for over two years now and there has been great improvement, but she obviously still has a long way to go. I'm hoping that in starting Kindergarten this year and going to speech at school along with her usual hospital appointment, improvement will pick up speed. She has started becoming less and less willing to work on her "words" at home with me, so I'm sure that has slowed her improvement recently. She does work hard with her therapist, and I know she'll get there eventually.

At kindergarten screening this past spring, they detected a bit of a problem while screening her vision, so they gave us an evaluation sheet to take to an Optometrist. We took her a couple of weeks ago, and discovered that she has an Amblyopia (or Lazy Eye). While it doesn't LOOK like one of her eyes is lazy, her vision in her right eye is really dim. The doctor said that it is a misalignment of the muscles in her eyes. She hasn't ever been able to see correctly using both eyes, so her brain has practically turned off her right eye. She gave us a referral to Eye Specialists at Columbus Children's to look into it further and see if eye surgery is necessary to correct it or if she can just live with it. It doesn't seem to be affecting her much at this point, but who knows later on in life, depending on her career, etc.

At the annual checkup appointment this year for the girls, the pediatrician checked them both for Scoliosis. The 8 year old checked out fine, but our newly 5 year old did not. There was an obvious difference in the height of each side of her back while bent over - a sure sign of Scoliosis. Now, I was also diagnosed with Scoliosis when I was a pre-teen and nothing ever really came of it. I went for x-rays and all that and it turned out not to be bad enough to do anything other than watch as I grew to make sure it didn't get any worse. The pediatrician sent our Bug to get x-rays locally and then called to tell us her curvature was measuring at 24 degrees. They referred us to an Orthopedic Specialist at Columbus Children's (an hour drive). The Orthopedic doctor was great and spent a lot of time with us explaining everything. They did a new set of x-rays while we were there, which measured at a 29 degree curvature, rather than 24. I knew this was not good because of everything I had read on the internet. Up to 25, they'll watch, but from 25-40 degrees, they usually brace. Higher than that they'll want to do surgery. He said that as young as she is, she still has so much growing left to do, it will likely just get worse over time if we don't do something about it now. He wanted to have an MRI done to rule out any internal reasons for the Scoliosis other than just heredity, etc. She had her MRI at Columbus Children's last week and that was a bit of an adventure. They needed to sedate her so she would lay perfectly still for the 45 minute scan. I was able to stay in the room with her the whole time and we could all be with her when she woke up. She was so silly and totally drunk-acting the entire evening. She was dizzy, kept falling down and dropping whatever she was holding. By the next morning she was fine though and ready to go to daycare and tell her friends all about it.

On Monday, the doctor's secretary called Hubby at home and told him that the MRI report showed an abnormality of one of her kidneys and referred us back to her pediatrician to have that checked out. That totally freaked me out, so I called and talked to one of the nurses there who actually read the report to me, stating that the left kidney was "abnormally rotated and located". The doctor would not be able to read the results about her spine until the following day and they'd get back to us. So I called the pediatricians office, told them everything and they requested the MRI results from Children's before they decided what to do. On Tuesday, they called back with a referral for a renal ultrasound at Columbus Children's for the this coming week. I've researched it online and am not really too worried about her kidney, considering she doesn't have any symptoms or problems in that area, but we'll have it checked out to be on the safe side.

On Wednesday, I called the Ortho Specialist's secretary to see if he'd read the MRI yet. They said that they were going to go ahead and put her in a brace, mailing us the prescription for the brace, a copy of her x-rays and info for the "Brace Man". He will fit her for a custom TLSO brace and make is especially for her. Once we pick it up, she will begin wearing it 23.5 hours per day under her clothes (always, except for when she's bathing or swimming). She will likely have several braces as she grows over the years, and be in it until she is fully grown (around 14 years). We will go back to the Ortho Specialist about 2 weeks after she starts in the brace for a checkup...

I know it doesn't really matter in the grand scheme of things, but I truly feel like most (if not all) of her conditions are somehow related to each other. I mean, what are the odds of one child having all these things "wrong" with her, and not all being part of some sort of underlying syndrome or something? Not that it would change anything if we found out that she does have a syndrome, unless a diagnosis like that would help her get some sort of help. I haven't really looked into that yet. Anyway, now I'm rambling.

I just wish I could take it all away. My girl is tough, but she doesn't deserve these challenges in her life. And to be honest, neither do the rest of us. But we'll make it through - together. God never gives us more than we can handle, right? He sure seems to have a lot of faith in us these days...

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1 comment:

junebug69 said...

I know things seem bleak right now but I have faith that these challenges will only make "bug" (and the rest of her family) stronger in the long run. Thanks for giving us the privilege to share your burdens. The load is always lighter when it's carried my many hands.