June 6, 2010

Bittersweet Updates

Wow, I haven't posted in a week. This past week has been very bittersweet mixed with some good news.

First, A is now in a big-girl bed! She has been in a crib all this time, even though she will be four in a few weeks. Back when we were using her feeding tube, she was on an overnight feed using her Kangaroo pump. Because she was literally connected to it, with a tube going from the machine to the button in her belly, we didn't want her to have a way of getting out of bed. If she had, the whole mic-key button would have come out of her belly, creating a big mess and potentially closing the hole. So, by keeping her in the crib it eliminated the possibility of her climbing out of bed and yanking the tube out.

However, since she hasn't used the feeding tube since last July, and since we are getting the tube removed in 6 WEEKS, it was time to transfer her. Last weekend we went shopping for a twin-sized bed, and were able to bring it home that day. In a few short hours the crib was dissembled, new bedding was bought and washed, and the new bed was put together. She slept in it proudly that night, and every night since. She loves it! It was bittersweet, losing the crib---now the only vestige of babyhood is her diapers---but it was definitely time to get a real bed.

Another bittersweet thing that happened was the school year ended for A (D gets out this week...I'm sure I'll be crying my eyes out on a post about that soon!). Although she was at this school last year in a 2-year old program, this was her first "official" year of preschool. I can't talk highly enough about this school...it is an inclusion program, meaning that most of the kids are typically developing, but they take a few kids with various needs. As I've talked about on this blog before, A isn't quite advanced enough, with her language delay, for a completely typical preschool program like my son attended, but is too cognitively advanced for a special day class. This school was, and still is, such a blessing to us. She has thrived there, and it was very sad to say good-bye to her teachers.

On the good news front, A had two medical appointments, both of which made me very happy. First, she saw her opthomologist. A has bilateral coloboma; she has a small gap on each of her optic nerves. In her left eye she is legally blind; she can (most probably) see some shapes and light, but that is it. However, her opthomologist is very pleased with her right eye! Although she most probably has a field(s) of vision missing (we won't know until she is able to tell us for sure) she otherwise has great vision in that eye! A few months ago A started to wear non-prescription glasses to protect her eye---with one good eye, we can't take any chances.

Finally, we had her yearly visit with her cardiologist, who did an EKG. A has some structural defects, including mild pulmonary stenosis and an aorta that arches to the right. However, her stenosis has not progressed beyond mild, and her cardiologist says she is "heart healthy". Huge sighs of relief here!!!!

All in all, a very good week with my miracle baby. Bittersweet, yes...but for all the right reasons.


  1. She's such a rock star! There's always a sense of bittersweet to growth in our babes, but with A it's so much more sweet than bitter.

  2. I'm glad your updates are more sweet than bitter. I find a lot of things in reference to parenting is bittersweet...probably even more-so when disability is involved.

    Oh, and can A teach Elijah how to stay in his bed? ;)

  3. Okay, whoops! I thought the first comment didn't go through, so I reposted what I thought I said the first time...and now, well...you have three comments from me! :) Whoops!

  4. Thanks Krista and Debbi! And Lisa...no worries...how many times have I put my wrong name on YOUR blog!?!?! I will gladly send A over for bed lessons to Elijah! ;-)

  5. I'd say that was a very good week!


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