UPDATE on Zoey....Cancer Free!!

I wrote this morning about little Zoey having a bone marrow biopsy today....and the news is fabulous, she is cancer free!!!! Woooo Hoooo!!! Please visit their blog to read the news!

Zoey Grace Needs Our Prayers....

Little Zoey Grace needs our continued prayers. She and her family have found themselves yet again at the hospital today...today to have a bone marrow biopsy to see if Leukemia has again found it's way back into her little body. For those not familiar with Zoey's story, she was diagnosed in October with Leukemia and quickly began aggressive treatment. She underwent 6 rounds of chemo and has been home now for 2 wonderful months...life was starting to get back to normal for them. However, Monday her blood work showed some unnerving numbers, particularly with her platelets. Leukemia is actually only one part of Zoey's story, this little girl and her family have endured so much, too much!! The bone marrow biopsy today will show them what they are dealing with.... My prayer is that this is just a curveball and NOT a relapse. Please pray for them.  

*The picture above is one of my favorites from our visit to see Zoey in the hospital, I think during round 3. I love how Zoey is showing Reid some tricks with her hands and peering over to see if he is watching her.... seriously how could he not watch...she is just too cute for words?!?!!!

Bowed Arms Are A Result of Radial Head Dysplasia

Thank you everyone for your comments and emails regarding my last post about Reid's bowed arms. I took Reid to the orthopedist to have the Dr. look at his arms....and what we found was that it appears to be skeletal and not just muscular as we had thought. It turns out his little bones did not develop correctly in utero in that his radius is out of place...The doctor said it is called Radial Head Dysplasia resulting in the inability to supinate (inability to turn palms straight up). I attached two x-rays showing his left arm and one with the Dr.'s markings as to where the radius really should be located (both of his arms have "dysplasia"). The Dr. felt that Reid will most likely accommodate his mechanical loss of supination with shoulder and hand motion but wants us to also check in with another specialist in his field who he believes to have more experience with this type of presentation. As it looks now we basically have two options...do nothing and watch and see how he does or we could do surgery when he got a little older called a forearm derotational oseotomy. As the last few days have gone by and we've continued our research more questions have come up for us and so we have decided to go for the second opinion to further clarify if there is anything we need to be doing occupationally to help him since there are sensitive ligaments and soft tissue that may still need stretching. We have also found that if we do go down the surgical road it is better to do it at a younger age than older...and also found that the "bowing" tends to become more noticeable around 2 years of age which explains why it came on our radar again. But...then on the other hand we have also found people who have lived with this their whole life and commented that it did not affect them in any way, except one said he had a hard time bowling. Aghhh....that was nice to hear. If not being able to bowl is the worst of it...then we are in good shape. :) So, for now we watch our cute little bowed armed Reid and help him to accommodate the best he can while we wait to get into the other specialist.

Crooked or Bowed Arms...Any One Else Experience This?

Okay so I need a little input from anyone who has experienced this with their child... Reid's little arms are bowed and he cannot turn them in front of him so that the palms of his hands are straight up in the air. The farthest he can turn his hands/wrists is with his thumbs straight up in the air. These pictures may not be the best to illustrate it, but Reid decided he did not want to cooperate this morning for pictures of his arms :). We noticed the bow or crookedness of his arms when he was an infant but we had so many other things to tackle with him that this took a back seat. But, now I am concerned that his crooked arms may hinder him with some small motor skills. Our occupational therapist is working with him and we are doing some muscle excersises to stretch and loosen the muscles. But, we are not sure if it is just a soft tissue issue or if it is more skeletal. I took Reid to our pediatrician to see what he thought and after examining Reid's arms he recommended we see an orthopedist. We have an appointment later this afternoon...but was wondering if anyone had any information to shed on this before I go. I have learned that to find a Dr. who has more than "general" information about children with Down syndrome is rare, so I would like to go in as prepared as possible.

This picture shows the limit he can rotate his wrist...

Reid's First Graduation Cap and Gown Style...Early Intervention...Connecting With Other Moms

I recently posted about physical therapy, the use of the Wii...and Reid no longer needing services from his in home physical therapist...a graduation of sorts in terms of gross motor skills. That post actually made me think of Reid's first true blue cap and gown graduation when he was 12 months. We had been sooo fortunate to hear of an Early Intervention Program in Laguna Beach funded by the Assistance League . (If you are reading this and live within 30 miles...it is definitely worth the drive!) This program is for babies with special needs, including preemies, 0-12 months. It is fabulous for many reasons...they structure the morning with first a music and movement time for the children and then move you into stations that you and your child rotate through. Each station has a specialized therapist there to work with your child on either occupational therapy, gross motor skills, feeding and oral issues, cognitive growth and/or infant stimulation. This was all fabulous and Reid benefited greatly from it...however the part I benefited the most from was the last hour of the program, I get choked up just thinking about it. A unique aspect of this program was that last hour...women who are members of the Assistance League volunteer their time by coming and rocking the babies and feeding them their bottles while the moms get an hour to go upstairs and share with one another, cry together, and just sit with others who "get it"...who get what it feels like to raise a little one with special needs, who have similar birth stories, who understand the emotions that go hand in hand with this road we are on.  What a special time...and as you can imagine lots was discussed, shared, and processed through behind those closed doors for so many of us.

I actually did not start the program until Reid was nearly 7 months. I didn't feel like I was ready any time before that...I was still living in my little cocoon I had built for myself and was feeling too overwhelmed with all the in home therapies he was receiving to even think about getting out of the house super early and spending 3 hours on more therapy. Well, if I could go back in time....I would have started the program with Reid as soon as they would of had me. Two things have truly helped me along this road....the interaction with those other mothers early on...and my blog. To connect with others who are walking in your same shoes is more than therapeutic, it is beautiful. I realized this the first day I went to the Early Intervention Program and I had not even made it inside yet, I was still just in the parking lot and looked over and saw one of the moms, who I now know as my friend Jocelyn. I remember seeing her getting her son out of her car who was close in Reid's age and I saw that he had Down syndrome too. She was beautiful, put together, had a smile on her face...and as I stood there by my car I had tears suddenly find their way to the corner of my eyes. I couldn't wait to talk with her because I knew she "got it". That was the piece I realized I was missing... connecting with others who also have a child with Down syndrome. That was 2 years ago and I have now met so many beautiful moms who "get it" and I am so grateful... I am a better mom for it.

Below are a couple more pictures from the EIP group...dressed for Halloween