February 27, 2013

Healed at Last

It's been a while since I've blogged, and even longer since I've updated about my daughter. I have no excuse except that I've been busy....and when I've had free time I haven't been in the mood to sit down and write.  Last week the kids were on vacation all week; this week I'm trying to catch up on any training I missed.  I'm also in the throes of helping to plan my school's foundation's annual silent auction/gala, which is what I'm doing most of the time when I'm on the computer.

My daughter, A, is doing great!  She broke her neck in mid-October; you can read all about that here.  I am happy to say that after only 4 1/2 months, she is healed!  She had on one of those awful halos for 2 months. That was the worst; in addition to having the halo literally screwed into her head in 6 different places, it was attached to a vest that could never be removed. We had to have special clothing adapted to fit over it, and couldn't give her a bath (she had sponge baths during this time).  In mid-December, she graduated to a hard neck collar.  Getting the halo off was awful---very bloody and painful for her--but well worth it.  I was able to give her a bath for the first time in months---words can't express the joy I felt in pouring water all over her.  She was able to wear regular clothes again. She had that one for a month, and then transitioned to a soft neck collar. This soft collar just came off on Monday, two days ago.

The orthopedic surgeon is thrilled with her. She has healed beautifully, and while she has lost some range of motion due to the fusion he did, she is still able to turn her neck and nod her head.  New bone is growing, and he expects lots more to grow.  She is still limited on some activities---for example, he doesn't want her falling from a height, with velocity, so she can't go on playground equipment, etc.  And things like roller coasters may always be off limits, which is a huge bummer because she is a roller coaster maniac, like me and her brother (with roller coasters, he's not concerned about the fusion breaking, but more about putting unneeded pressure on other parts of her spine).  It's all good though. I know what a gift we were given.  Where the break was in her neck (C1/C2) is where people become quadripalegic.  Her spinal cord was never touched. I am eternally grateful, and know she has angels looking after her.

Something that I don't think I've written about are the GI issues A has been having.  This started back last spring, probably around April or May. Suddenly she started having very loose stools, and was unable to control them, resulting in lots of accidents soiling her pants. At first I got mad at her (she'd been potty trained for a year at that point) but then I realized she couldn't help it.  I tried different diet modifications (completely dairy-free; cutting out grease/oil) but still no effect. My step-mother recommended a pro-biotic drink/yogurt, but that didn't help.  We ended up seeing a GI doctor last summer, and after lots of blood and stool sample tests, she determined that she couldn't see a cause for the loose stools.  She DID see a slight infection, and thought that an anti-biotic would clear it up, but after a round of medications A still had the same loose stools.  The new plan was to put her on Immodium to bind her up (which worked) and to schedule her for an endoscopy/colonoscopy to see what was going on in her stomach and intestines.

The procedure was scheduled for November, which I dreaded, but then we had to cancel it because of the broken neck.  In the meantime, I had questions about scheduling, etc and tried to contact the GI doctor, but never heard back from her.  I got really frustrated with not only her, but her office staff (schedulers and nurses) who I found lying to me in subsequent emails....I felt that A's care was slipping through the cracks. So I requested a different doctor, and was able to get a referral to see the same GI doctor who we used to see.  This particular doctor was the one who scoped A 3 separate times, and was the one who eventually removed her feeding tube in 2010. I tried to see her last summer, in fact, but at that time she wasn't taking new patients. I lucked out in getting to see her now. (For the record, this is the 4th or 5th doctor that we've "fired" and gotten a new one. I am not a difficult patient, but I am A's best advocate, and I won't tolerate sub-par health care, especially when we live in a city with some of the the best doctors and children's hospital available).

In the meantime, a few weeks ago A had a bad cold, and I ended up taking her to the pediatrician to get checked out because I wanted to make sure her lungs were clear.  We saw the nurse practitioner, and briefly talked about the GI issues that were going on (it came up because when she asked what medications A was taking, I had to respond with "Immodium".)  She asked if we had tried probiotics before.  I replied that we had tried probiotic drinks the previous summer, but they didn't help. She recommended an actual probiotic powder. I decided to try it, thinking it couldn't hurt.  I started her on it last week (I waited until last week because she was off of school for the week; in order to know if the probiotic worked I needed to take her off the Immodium, and I wanted to have her home in case the loose stools happened again. What a nightmare that would be for the school staff).

Well, it's now been 10 days, and she's been fine. 10 days of the probiotic (I just put a teaspoon of the powder on her waffle or in her oatmeal every morning) and 10 days of no Immodium. And 10 days of no accidents, just nice solid poops every days.


This morning was the GI appointment with her old doctor. She hadn't seen A in 2 1/2 years, since she removed the g-tube, and it was great to see her.  I explained all that happened (she had already read the chart and was up-to-speed) and she agreed with me that there is no reason to scope her right now, as long as things seem good!  A main reason for scoping would be to rule out celiac disease, but since she's already scoped her 3 times,  plus the blood tests were negative, she knew she didn't have celiac. She said sometimes our gut environment just changes.  So, the new plan is to keep her on the probiotic, and if she ends up with the loose stools again to put her back on the Immodium, email the GI doctor and we'll make a plan from there.

So, lots of good updates!  A healed neck and hopefully (and I really hope I'm not jinxing us by writing about this) a healed stomach.  Additionally, she's going great in kindergarten, is reading beautifully, has made friends at school, and remains a delight and the light of my life.


  1. I can feel your relief shining through these words. It's been a long stretch for you and A - so happy things are looking up!

  2. So glad to hear your daughter is doing well!

  3. so glad to hear your daughter is doing well (MKSINMD)


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