In celebration of Mobility: Aliyah Update #2

Playing in the leaves before her cold

October and November was a long silence on this blog.  Aliyah got sick.  It started with a common cold – I fondly called her my little snot faucet – during which she sneezed, coughed, snuffled and sniffed but was otherwise her normal happy self.  Within two weeks, it mutated into an ugly virus that caused all kinds of heartache and worry.  Aliyah couldn’t hold down food, didn’t drink (that’s a huge indicator of Aliyah’s health as she normally drinks like a horse – and pees like an elephant), and lost all the beautiful pounds she put on in September (so, really, only one pound – but on a wee smidge like her, that’s a big deal).  I wanted to be all cool and collected and manage this flu without too much fear, and made it to the peak  before we did a little trip to the ER.  Of course, that was the worst night of the flu and she was on the upswing after that.  She did learn to tell us when she has to “pook,” and now, every time we pray she reminds us to pray she doesn’t “pook” – which is endearing and sad at the same time.  At any rate, as of November 14 she’s been healthy and gaining once again.

So, every 3 months we get to make the long trek up to the Children’s Hospital for a loooong appointment that starts with bloodwork and ends with a lively discussion with the doctor regarding Aliyah’s current health and any concerns we have.  November 27 was our second of these “cystinosis clinics” and SUCH good news came from that!  First of all, she no longer needs iron or activated Vitamin D, the first of which makes her sick and the second of which is very expensive.  Her sodium phosphate was decreased and all her other electrolyte numbers, even after being so sick, were “brilliant.”  She had started gaining weight (but was still below previous weights).  She is now en route to 20 pounds, hopefully nearly there.

But the best part came today, with the phone call from the cystinosis nurse.  Aliyah’s cystine levels, which were 3.8 in June and 0.7 in September, are now at

0.02!!!!

Merry Christmas to us!  That is definitely the best gift we could have received.  What that means is there is very little damage currently occurring in her cells.  We are thrilled!

In addition to all this fabulous news, we have been hoping to eliminate the medications from Aliyah’s regime, and as of two weeks ago, she no longer needs her anti-nauseant medication.  This is another great “drop” from our medicine cocktail!

In other Aliyah news:

She started crawling two weeks ago, and has the cutest little wiggly-bum when she does it.  And she started walking on teetering toddly legs last week!  While she still doesn’t prefer walking (it is, after all, fairly slow and involves lots of falls), we often find her walking ’round and ’round the couch, giggling to herself.

Aliyah's Great Strides

Last week, her G-tube was replaced with a Mic-Key (Peg), which is a tube that we hook-up and take off when she is done, which definitely makes for easier movement.  The initial exchange was painful, but now she tries to put it in herself.

Aliyah still talks up a storm – her new obsession is “na-na-niles” (crocodiles) and Santa (on who’s lap she happily sat).

On the parental front, Bob and I are managing to get more sleep as well.  We’ve figured out a feed schedule whereby the midnight meds only take 15 minutes instead of 45, so I can go to bed at a normal time and wake briefly at midnight before sleeping the night through.  And since we have sleepers (yesterday our girls slept until nearly 9am), I’m quite well rested.

All in all, a very positive month.  Aliyah’s nose has started running again, though, so here’s hoping it stays just a cold…

Proud as punch

 

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5 Comments (+add yours?)

  1. beth@redandhoney
    Dec 22, 2011 @ 01:31:50

    So much good news!! Hurray! Merry Christmas to you guys, hope you have a great time 🙂

    Reply

  2. Aunt Ruth
    Dec 22, 2011 @ 01:36:44

    wow! I love this great news!!!!! Now we just want your family to have a very happy Christmas!!! Sent with love to all of you.

    Reply

  3. Nettie Wiens
    Dec 25, 2011 @ 10:22:01

    This is so wonderful! This very special little girl, who has taken you on a very unique journey, always surprises us as she navigates her way through hurdles and hassles in her spirited way and brings us so much joy. She blesses our socks off constantly. We thank God for all of you!

    Reply

  4. Chrisaline
    Jan 19, 2012 @ 16:57:21

    Wow. That is great news! I hope things are still going well (since I’m reading this in late January – sorry). Thanks for letting us share your life a little by writing “An Earlier Heaven”.

    Reply

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