Testing Week

I read an article this week that resonated with some of the thoughts that I've been having about Down syndrome. "Down syndrome does not define an individual any more than my brown eyes define me. It is a part of who that person is- first and foremost a human being." We are far more alike than we are different.

"A person with Down syndrome is not disabled. Rather they are a person who is able with a different set of abilities. In our pursuit for perfection in this cut-throat society it is so easy to put labels on people rather than just seeing them as people with different circumstances. For those of us living outside of society’s definition of “normal” and not just with Down syndrome- the fact that some people wear their challenges outwardly does not make them disabled... In fact aren’t we all challenged and inadequate in some way whether it be emotionally, socially, intellectually, athletically, etc? Oscar Pistorius, a South African paralympic athlete said, “ My mother said to us one morning, ‘Carl, you put on your shoes, and Oscar, you put on your prosthetic legs.’ And that was the last we heard of it. I didn’t grow up thinking I had a disability,” he said, “I grew up thinking I had different shoes.” 

Another person, another gift, another life! Another opportunity for us to learn more about our God for we are ALL created in His image; with unique features, gifts, and abilities. I hope that one day, each of you will get the chance to spend time with Claire. It's hard to put into words but there truly is something so unique and special about her personality and attitude... we are blessed!

....and I don't see any of that here <3.

And for the updates .... 

All checked into the 
hospital this morning
for her procedure

Claire is still having lots of trouble breathing (it's getting increasingly worse) despite being on the heart medication for 2 weeks as well as thickening all of her breast milk for the same amount of time so we are in kind of a "testing week" with both GI and cardiology. This morning, she had a procedure to place a probe in her esophagus. It's attached to a little computer and will test the functioning of her esophagus as well as the pH. I push a button when she's eating, lying down, sitting up, coughing, having trouble breathing, or gulping and that further helps them read the results. She is also having another swallow study on Wednesday to see if aspiration is still a contributor.

We saw her cardiologist on Friday for an EKG/Echo/X-ray. She has only gained 7 grams of weight per day since our last appointment with him and that's with the feeding tube and fortifying the breast milk (between the previous two appointments she was at 22g/day). She had an X-ray on Friday and another this morning, the amount of "junk" in her lungs has increased quite a bit even just over the weekend.  He has increased the volume of her current heart medication as well as adding in THREE new heart medications (for a total of 4, and all are taken 2-3 times/day). He has also increased our visits with him to weekly. We are still hoping to hold off surgery until she's a little bigger/older so we need lots of prayer that she turns a corner VERY soon. If her lungs continue to get worse at this rate, heart surgery will not be far off. 

Our insurance is refusing to cover three of her medications (one is for GI and two heart medications) so we would appreciate prayer for that as well. The doctor says that there are no alternatives and that she absolutely needs them right away so we are praying that they agree to cover them and soon! The cardiologist's office has made an appeal and are communicating with the insurance company and I am on hold now waiting to make my own appeal.

Her surgeon is keeping her irrigations and dilations the same (each 2x/day) so that we can just make sure that we aren't adding in any factors as we're figuring out her heart and breathing but she did talk to us a little bit about placing a G tube. This would replace her NG tube, it would be a surgical procedure and involve a few days in the hospital. I am not convinced that we need to do this yet but she wants to keep it on the table so we will see how some of her testing this week goes.

Here's a little peek into Claire's adventures this week:

Thank you for your prayers and encouragement <3. Have a blessed week friends!