The Journey We Are On.....

Ethan has been signing "eat" and "more" for sometime now, but last night at dinner he was putting them together over and over again like we've never really seen before - and we caught it on video!

If you find yourself in Central Illinois on Saturday, May 5th, please consider joining us for an all you can eat pancake breakfast event, "Pancakes for PBD." The money raised will go to help offset the cost for families to attend the 2012 Global Foundation for Peroxisomal Disorders Family Conference this summer in Orlando, Florida.

After 8 days without drinking anything, Ethan must have finally gotten thirsty! This morning he drank 8 oz. of his soy pedisure from his bottle, took his medicine and ate his oatmeal for breakfast! It is a wonderful way to start our Saturday morning! We are praising the Lord this morning for this little miracle!

Months and months ago Ethan's PT ordered a stander for Ethan. A stander is a piece of medical equipment that is designed to assist a child or adult in standing. For Ethan, the hope is that the stander will allow Ethan the opportunity to bear more weight through his legs, thus strengthening his muscles so that he will be able to stand independently and someday walk. Ethan stayed in it for ten minutes tonight, with us entertaining him the whole time, of course. :) He will eventually work up to being in it for 20 to 30 minutes at a time, at least two times a day. It will take us a while, but other moms with little ones who have needed standers said that they have really helped strengthen their legs. Ethan can stand at the couch for a few minutes, but he needs more weight bearing to help not only his muscles but also his bones. Here are some pictures.

So, to update from yesterday. Ethan is still not drinking. He is still violently protesting the moment the bottle comes near him. But, he is continuing to eat, so we are very thankful for that. Last night he at 4 oz. of green bean, pear and pea baby food at church and had another wet diaper before bedtime. He slept through the night and woke up this morning with a "good' wet and dirty diaper. He refused the bottle again this morning but with much coaxing he did eat 4 oz of his pediatric drink which I thickened with rice cereal along with his meds/vitamins this morning in his high chair. Ethan doesn't particularly care for the high chair anymore, so this of course adds to the stress of meals. We had another dirty diaper around 9:30am before we left for our Special Connections playgroup. When we got to our playgroup Ethan ate 4 oz. of strawberry applesauce and then played and played. I think he had a good time. I know I did. It was great! We had 5 mommies and our kiddo...

Ethan hasn't taken his bottle since early on Thursday evening. Since he won't drink out of a cup, and with a straw cup that we squeeze the liquid into his mouth he gets very little volume, he has simply cut off his drinking. This has us very worried of course. We have been pushing tons of applesauce and have been mixing pedialyte with the applesauce to give it more fluid, etc. Saturday morning we took Ethan to a local "Express/Urgent" Care clinic and saw a doctor. He ruled out strep, ear infection and flu. He told us to push fluids (HA HA HA, if it was that simple we wouldn't have been at the doctor, right?) and to watch for wet diapers, etc. He said that if Ethan didn't have at least 4 wet diapers in a day that it was time to head to the hospital for IV fluids. While I wasn't completely happy with the clinic visit experience, I am glad that we went. We are pros at keeping a intake/output journal, although we haven't had to in a while, but here was...

Recently I read a quote that someone had posted on Facebook, "We're not sisters by birth, but we knew from the start, fate brought us together to be sisters by heart." If I was writing this post 10 years ago I would be have been talking about my Alpha Chi Omega (AXO) sisters. But these days when I read that I think of my PBD sisters and other mommy friends of little ones with special needs. I think we've all heard the saying, "Friends are the family you choose for yourself." I will admit that I wish I would have met all these amazing people through different circumstances; but I can't even think of what this journey would be like without them. Since Ethan's diagnosis it has become harder and harder to be around friends and family with typically developing children. The friendship and sisterhood that I have with other mommies of extra special ones has been such a blessing to me. We are a family. Like any family we sometimes hurt each others feeling...

We have yet to find the left hearing aid that has been missing for about two weeks now.... So, yesterday at the audiologist we had new earmold impressions made and also ordered the replacement aid. Thank goodness for Early Intervention that will help pay for the new hearing aid, because our insurance doesn't cover them. Ethan should have his new earmolds and the new hearing aid in about two weeks. We've all noticed a huge difference since he has lost the one. He isn't nearly as responsive or "talkative." Plus, we've had to go back to wearing hats, not only because we can't lose the only one we've got, but because he is constantly pulling the right one out. I'm guessing that it must be pretty weird to only hear on one side since he's been aided bilaterally for so long, but that is just my guess.

On Monday afternoon when Jeff got home we headed to the park!

Last week I read an article from the New York Times "The DNA Age - Prenatal Testing Puts Down Syndrome in Hard Focus" which explained that today 90% of parents who find out that their child will be born with Down Syndrome (DS) chose to terminate (abort) the baby. When I read this article my heart just ached. It ached because to me the article showed how little life is valued, especially if the life in question may not be a "typical" one. When I spoke out about this article on Facebook, I struck a nerve with many people. While my intentions weren't to "call out" or personally hurt anyone who has had an abortion after finding out that the child they were carrying wasn't going to be a "typically developing child" it became clear that many felt that is what I was doing. I want to apologize to those that I may have hurt, but I will not apologize for believing that abortion is wrong. I will also admit that I may not have chosen the best word...

This evening Ethan and I drove over to Springfield to attend the Down Syndrome Infant Playgroup. It was great. The majority of the kids were under the age of five, and two of the little boys were really close in age to Ethan. It was a wonderful! While Down Syndrome and PBD are very different, it was still great. The moms were so nice and really welcomed me into the group.