Saturday, August 22, 2009

"I Did It"

Have you heard about these fabulous shirts....?? The brain and heart behind these shirts is Jennifer, Joaquin's mommy, at Three's A Charm. As soon a Jennifer posted the idea I sent her a check right away and couldn't wait to get ours in the mail! The heart and intent for these shirts is the essence of Jennifer as I have gotten to know her through our blogs... she is amazing...the shirts are amazing...her "pay it forward" so to speak with the purchase of the shirts is amazing (please read her post for details). I am thrilled that Reid can proudly wear his shirt as he has indeed earned the right to say "I Did It" for so many milestones....and I am thrilled that this shirt will also remind me each time he wears it that somewhere someone will have a Gifts 2 book in their hands because of it. (Jennifer also happens to be one of the contributing authors in the book) :)!

Reid has earned the "I Did It" slogan for so many, many things in his short little life...enduring 2 open heart surgeries is only the short of it. His newest achievements have come in the form of speech and cognition...which is so thrilling for us! Little by little he is starting to say new words and though Reid cannot say "I Did it" on his own yet...honestly the phrase would have been so appropriate for the little story I want to share, which made me smile from ear to ear! I heard Reid reading in is room as he does everyday and I usually hear him laugh at something or say wow or whatever catches his attention, but on this particular day I heard him say "Ba-bye" over and over again...I had to go take a peek to see what he was reading and I found him saying bye and waving to this picture below.... I just giggled and found that to be just about the cutest thing and the SMARTEST thing that he recognized that this boy was turned away from him and because he saw the back of his body and his little butt (which made Luke giggle) that meant he was running away, therefore eliciting a "Ba-Bye" from Reid. The thing is Reid had no idea why I was so excited but I knew...I knew that to be such a great speech and cognitive I said the phrase for him..."You Did It Buddy"! This page is from the book, No, David (by David Shannon).

Okay sooo...I know the intent of the shirt is not meant for this....but truth be told about events around our house this shirt can also indicate "I Did It" to fess up for mischievous endeavors that my little one has found himself apart of. Like....if I un-crop the top picture you can actually see the mess he created with his baskets of toys in his little playroom.

or the "I Did It" for once again pulling tons of books off the shelves and out of baskets in his room....once again, sigh! :) about this little beauty of a mischievous act??....Don't let the innocent smile or his mismatched pajamas fool you, once I walked out of the room the pure white chair was no longer as I had left it, nor my desk....he REALLY should have been wearing his shirt this day.... But, no worries Luke shouted out for all to hear and for all to be clear..."He Did It, Not Me!!!!"

Jennifer...I love these shirts and I have loved reading the stories of families who have also purchased the shirt and sharing their children's "I Did It" stories....what a special thing you have started...I am so glad to share in it!
<span class=

Sunday, August 16, 2009

The Happiest Place on Earth...I Mean the Wettest!

Yesterday we celebrated Toby's brother's birthday at the Happiest Place on Earth...(Happy Birthday Ethan!). But, yesterday Luke called it the "Wettest Place on Earth". I'm not quite sure how we've had annual passes to Disneyland and California Adventure for over 5 years and yet never gone on the Grizzly River Run...but yesterday we indulged and we got... SOAKED. Good thing it was a hot day!! Luke was laughing so hard, and thankfully so because he got the brunt of the water in our raft. I'm wearing black so you can't really see the water damage, but trust me there was damage :).

* This picture is Reid excited to see us again after our 45 minute wait for the ride! 

Friday, August 14, 2009

Look What I Found At Costco....Super Cute Puppets!

I had to share this find....they are just so cute and inexpensive! Maybe it is the kindergarten teacher in me but when I saw these plush and very darling puppets at Costco for $7.60 for the whole set of 4 I just had to scoop them up, I am sure they will be gone the next time I go. They are sold in sets with jungle, reptile, farm, and dog themes. Reid loves to play with puppets...these are just perfect for him and his little friends!! 

Wednesday, August 12, 2009

Wordless Wednesday...


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 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 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?!?!!!

Sunday, August 9, 2009

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 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.
<span class=

Wednesday, August 5, 2009

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...

Sunday, August 2, 2009

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 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
<span class=