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, April 26, 2009

Latest News about Emma....

Emma is growing and developing....slowly, but steadily. As you can see in the recent video, she has quite a vocabulary now and is able to use her walker to get around and even play outside on nice days! This is a dream come true, for her and for us; how we've longed for a way to let her play like other kids!!

She is happiest in that Rifton walker....that's where she has the most freedom.

As to her medical issues, the most recent events include:

1. A firm diagnosis of Infantile cerebral palsy, non-specific.

2. Consensus among several of her doctors on the diagnosis of Gomez-Lopez-Hernandez Syndrome (yes, Emma is one of the rare individuals with this syndrome).

3. Emma will soon be scheduled for surgery to remove a small nodule on her throat. Her ENT doctor, Dr. Koempel of CHLA, says it could be one of a couple of different things, and it needs to be removed. She had an ultrasound last week to confirm that she has a thyroid separate from the nodule, which she does. We see Dr. Koempel again on Wednesday and may be able to schedule the surgery at that time.

Matthew will be seen by Dr. Koempel as well, as he has developed a "bump" on his throat too. Please keep both of the kids in prayer for these issues.

4. We were just informed a few days ago that Emma will continue as a client of Regional Center after the age of three. This is wonderful news....we were afraid that she might "fall through the cracks" because her physical issues are unusual and don't fit many of the standard patterns. It's hard to pigeon-hole Emma!! But the diagnosis of CP apparently helped.

Unfortunately, we will not have the same Service Coordinator that we have had these last few years....we will miss Van very much!

5. The last time Emma saw her pediatrician, Dr. Roberts, there was mention made of the possibility of a gastric tube. We hope it will not be necessary, but she is not gaining weight, even though she is growing lengthwise. We'll find out soon if she has managed to gain any weight in the past few months.

I will post more info soon! And more pictures!!

Sunday, April 19, 2009

Matt is home

Little Matthew Patrick passed away this morning. Please keep his adoptive family in your prayers.

Saturday, April 18, 2009

Update on little Matthew Patrick

Several weeks ago I posted a prayer request for baby Matthew Patrick, a baby born with a very serious (terminal) medical condition called hydranencephaly. According to his blogsite, apparently little Matt is already nearing the end of his very brief life here, and I would like to ask you to pray again for him and also for his adoptive family members. This is a very, very difficult time for them....I can't imagine their grief as they prepare to say the final goodbye to their little one.

Melanie's Birthday Party Giveaway!

Melanie, of "Better Than Normal" (mommy to that amazing boy, Daniel), is having a contest....the prize is a Better Than Normal birthday party kit, which includes adorable, hand-made, felt crowns for the birthday child and 5 of their friends. Please visit her website for the rules of the contest and to see pictures of the crowns....they really are great! Any kid would love them!

Friday, April 10, 2009

Video of Emma using her Rifton walker

This is a short, very amateurish video from a few days ago when we had a nice sunny day (today it's overcast and the high is 59 degrees Fahrenheit with a 50% chance of rain). Unfortunately I was breathing directly into the microphone so it sounds like Darth Vader shot the video...sorry about that! In addition, the battery died unexpectedly so the video ends quite abruptly.

OK....now that I've explained all of the oddities and issues with the video, enjoy Emma and Matthew playing in the backyard on a warm Southern California day! Emma talks quite a bit in this one.

video