This blog is dedicated to differently-abled children, particularly those diagnosed with a radial ray defect, hematological issues, Failure to Thrive, developmental delays, microcephaly, cerebellar dysgenesis or cerebral palsy.

Sunday, December 21, 2008

More news about Dr. Paley's move

Dr. Paley called us at home this afternoon to update us on his move, which was very kind of him. He will be moving his practice to Orlando, Florida, to the Disney Children's Hospital; everything should be in place by 1 June 2009. He says that there is a Ronald MacDonald House very nearby, and that he will put us in touch with his secretary to make all arrangements sometime early next year.

I told him that we had decided that it might be better to wait to do Emma's arm surgery (currently scheduled for 30 June 2009) until January 2010 so that I have a lengthy period away from teaching duties. Perhaps mid-December 2009 would be even better (immediately after final exams so that I would have nearly 8 weeks until I had to start teaching again) but that would mean we would spend Christmas in Florida...well, that might not be all bad!

I just want to be sure that I'm able to be there as much as possible so that Paul isn't left alone with Emma and Matthew in a strange would be very difficult.

In any case, because Emma has developmental delays Dr. Paley thinks that it's better to perform the surgery a bit later, so winter 2009/2010 will be fine.

I will post more after we actually schedule the surgery date.

Friday, December 19, 2008


Emma saw her neurologist and gastroenterologist this week. Dr. Collins, the gastro doctor had Emma's genetic test results back: yes, she DOES have one of the celiac genes! Emma has the one that I don't have; I have HLA DQ8 and Emma has HLA DQ2. Which means she didn't get it from me! Nevertheless, this means that she does have some chance to develop celiac disease, if she doesn't have it already. So I definitely WILL put her on the gluten free diet with me in the near future. Also, Dr. Collins wrote a prescription for Emma to start taking Previcid, which is what her cousin Carly takes for GERD. Carly has celiac disease; she was diagnosed via biopsy.

The neurologist, Dr. Imbus, didn't have a lot to tell us. I asked for a copy of Emma's chart, so that we could send Regional Center the records showing Dr. Imbus has entered a diagnosis of 343.9, Infantile Cerebral Palsy, non-specific. We hope that this will enable Emma to continue as a Regional Center client after she reaches the age of 3.

Also, Emma was FINALLY seen by the OT and PT people at the Claremont Medical Therapy Unit. They evaluated her and I really liked both of them. The PT person is Julie and the OT is Irene. Emma did very well; I was amazed at one point when Julie got Emma to stand for several seconds leaning against a little bench. Then she put Emma in a small Rifton walker and let her go. She got her to walk forward and backwards.

Emma was being a bit shy, as she always is around strangers. She wouldn't talk at all to either of them. Irene tried to get Emma to throw balls and other things and that wasn't working so well.

Of course, the instant Julie took Emma out of the walker, Emma forgot all about being shy and announced, "I want to go in the walker!". She absolutely adored that Rifton walker! Julie says that they may be able to loan it to us temporarily, but they will try to help her get one of her own. Emma's current walker at home is just a standard walker for babies, and it is too short for her now.

I'm SO glad that they agree that mobility is important for Emma; that's what she craves right now! Julie and Irene also asked what we thought about a wheelchair for Emma, but I said that a standard manual chair wouldn't work because her hands and arms are too weak to move one. We may have to have a wheelchair for her at some point, but both therapists said, "This girl is going to walk!" while they were observing her in the walker.

It's really exciting when a professional says something encouraging like that! Her doctors never make those kinds of predictions. Maybe they think it's unprofessional? Or they are afraid to say something like that in case it doesn't happen.

I think Emma will walk...when she's ready to.

Wow, is Emma talking!

Emma is definitely very verbal for a two-year-old....she's stringing long sentences together, and they actually make sense!

The other night about midnight I was trying to get her to go to sleep and she looked at me with her hands up to her cheeks and said in her sweet little voice, "I can't go to sleep; what am I going to do?".

Then again, yesterday when she was in her high chair she told me, "I want to go in the walker", which is something she says quite often because she LOVES her walker! I looked at her and asked, teasingly, "Was that a command, your Majesty?".

Emma didn't hesitate a moment. "Yes", she said, with a very serious expression on her face. Kids can be so unintentionally funny!

I'm still trying to get some of this in video; I'd love to put more videos of Emma on this site.

Tuesday, December 16, 2008

Sleeping babies

Emma's such a sweet little girl...I know that I'm biased, but I'm not the only one who sees her beautiful loving spirit. Everywhere she goes she causes more fans to join the Emma fan club.

I can't resist her when she looks at me and says, "I want to hold you!". Which is Emma's way of asking to be picked up. She loves to cuddle. Lately she's started kissing me and Paul spontaneously. If she's in her walker, she comes over and starts kissing our knees. It's too cute!

Unfortunately she's been having trouble sleeping at night (we think it's the GERD) so sometimes she ends up in bed with us, sleeping in my left arm. This elevates her head enough to keep her from having bad reflux attacks so she can sleep better. I didn't realize how much I had missed having a baby sleep in my arms until we got Matthew, and then Emma. Both of them have spent some time sleeping in my arms (it's a good thing we have a big bed!).

I learned long ago in a galaxy far away (when I was breast-feeding my four biological children) how to sleep perfectly still and hold a baby and keep one hand against my husband's back so that if he even STARTS to roll towards the baby I instantly wake up and push him away. It's like riding a bicycle; your body never forgets those hard-won skills.

When she's in my arm, asleep, I love the sweet baby smell of her hair, the wispy softness of it. She looks much younger than she actually is because she's so small. I realize that these are probably my last chances to cuddle a sleeping baby; it's unlikely that Paul and I will adopt any more, although we've discussed it.

Well, I am enjoying this phase of Emma's life while it lasts....she won't be a baby forever! But I know that there will be things to enjoy about each and every part of her life, as she transitions from baby to child, from child to pre-adolescent, from pre-adolescent to teenager, from teenager to adult. If the Lord grants me the time here on Earth to see all of these things happen, I will be very grateful!