A Week of Appointments

In an attempt to keep friends updated, I will recap this week’s appointments.  It was a doozy.

Chloe went to the endocrinologist.  This is the doctor she has been seeing for precocious puberty.  We were preparing to do a big test to finally determine how involved her body was in the puberty process and then to stop its progression.  Well, after examination, the doctor felt like her body had either stopped or greatly slowed in the puberty department!  Praise God!  I had sort of felt like the same thing was happening but was thinking maybe it was my wishful thinking.  But he confirmed it!  Yay!  So for now, no puberty and no needing to stop puberty.  Great news!

Chloe was casted for nighttime leg splints.  The purpose of wearing the splints overnight is to stretch and lengthen the muscles in Chloe’s lower leg — basically the calf muscles.  She has lost the ability to straighten her legs, and the bend at the knee and the ankle are getting progressively worse.  Eventually this stance puts too much pressure on her knees and causes problems.  This is our plan of action to avoid that.  The foot part of the splints will be hard plastic like her daytime braces.  Except these nighttime splints will have hinges and brackets so that I can control how much they stretch her muscles.  The idea is to start slow and work our way up to a nice stretch.  Hopefully she’ll tolerate them.  When we get a decent stretch, we will also add knee stabilizers to stretch the other calf muscle at the same time.  We’ve tried to do knee stabilizers at night before, but she just took them off.  We covered them with tubing and tube socks, but she just took them off.  At first they assured me that Chloe wouldn’t be able to take these new ones off.  I kept thinking that if I can take them off, then I am pretty sure she is going to be able to take them off.  But who knows.  Well, I think the lady who casted her this time is in agreement with me that it will be a challenge to keep them on.  Ugh.

We had an appointment to get Chloe’s wheelchair adjusted.  This appointment took forever because she has grown so much and the chair was in such bad shape.  We did this appointment at school so Chloe wouldn’t have to miss more school.  Unfortunately it doesn’t look like there is much more growth in this wheelchair, and we’ve only had it for 2 years.  Medicaid only buys a chair every 5 years.  Bummer.  The guy said there are some ways we can sorta rig it and add growth.  Hopefully their creativity will get us through 3 more years.  This is the same DME that will help us get a car seat.

Chloe had an appointment with the spasticity clinic.  This clinic was at the neurologist’s office and was with a team of people:  the neurologist, his nurse, the social worker, a PT, an OT, and an orthotist.  This is the same doctor who did the botox in Chloe’s neck in May.  He wanted her to come to clinic so that we could discuss botox for her hamstrings, for her trunk, and for her neck again.  They all talked and asked questions, stretched Chloe’s body this way and that, watched her gait (how her body works while she walks), and said that they could do botox to see if it would help.  Then I spoke again and commented that from what I understood them all to say, this botox procedure which has the potential to temporarily take away Chloe’s mobility is mostly just for cosmetic purposes — to give her a more normal looking gait.  They all kinda looked at each other and then nodded in agreement.  Yes, at this point that’s really all it was.  So I said no thanks to the botox procedure.  I don’t have a problem with the appearance of Chloe’s gait — she has found her strength and stability by tightening those muscles, and I’m not ready to take that away from her and just see how she does just so that she can walk in a way that won’t look so odd.  When it gets to the point that her knee is working too hard because of her stance, then we will revisit botox.

Zachary went to the ophthalmologist.  He has had 3 eye surgeries on both eyes to correct strabismus — basically to get his eyes straight and encourage his brain to use both eyes at the same time for seeing.  His last surgery was over a year ago, and the doctor’s report was a great one!  The eyes are still mostly straight, and his vision hasn’t changed much in the last 6 months!  We will do one more visit in 6 months and then maybe be released to seeing ophthy only every 12 months!  Yipee!

Elliot had his well-baby visit.  He turned 11 last month.  He did great.  No huge surprises.  Except a surprise for him — 3 shots!  But once the nurse convinced him to let her near him (and I threatened to ground him for forever) he was a trooper and took his 3 shots.

And I had a routine mammogram.  I only mention it to encourage you to have yours if you’re due one.  It’s not a big deal.  It’s quick, and it’s over.  In order to take good care of our kids, we’ve got to take care of ourselves and make sure we’re around to care for them!  Just sayin’.

And that’s it, folks.  Another day, another week.  Another ordinary week.  🙂

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One response to this post.

  1. […] reading over the last year.  I hope you’ve been entertained, encouraged, and possibly even educated.  It’s been fun opening a couple of windows into my family’s […]

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