Juggling

What a busy week….and it’s only Wednesday! We gave Stanton his last breathing treatment Monday night. He still has a nasty sounding cough, but now has short spurts of playfulness and being silly. He is also up to drinking an average of 15 oz of formula a day (still not close to the 32 oz he should drink, but an improvement). Now, if we could just get him back to sleeping through the night – that would be great! I’ve been sleeping with him sitting up in the la-z-boy since Saturday. When he lays down flat, the coughing and vomiting really get exacerbated, so the chair has been the best way to keep him comfortable.


Today we had an ENT appointment in New Orleans. Our appointment wasn’t until 1:30 so we spent the morning at the Louisiana Children’s Museum with my dear friend and her children. It was great to just be out, playing, visiting, and feeling normal for the first time in a while. Thanks Nikki for meeting me and spending your day with us.

The ENT said Stanton’s throat and ears look good. He seemed as frustrated as I am that another year is about to close and we still have no real diagnosis for this chronically sick little one who still can’t seem to eat. I do feel we have a better plan of action – but in reality – we are still just ruling things out and searching. The ENT ordered a sweat chloride test so we have to go back tomorrow to have this done. They only do the test at 1:00 so we just missed it for today. This test rules out cystic fibrosis. I really don’t think this is what we’re dealing with, but the ENT was surprised to realize that CF had not been ruled out already. Stanton has had tons of upper respiratory infections, croup, and pneumonias, so the ENT felt we should take a look. Wish us luck with that tomorrow!

I also received a message from Dr. Martinez’s nurse. Dr. Martinez is our genetic doctor. We had some genetic lab work done back in early September. The last call I received said everything looked normal, but they were still waiting on one test to come back. So….9 weeks later the results are in. The nurse’s message said the organic amino acid results show an elevated level of enzymes and acid so the doctor would like for us to have more lab work done to look closer at this particular issue and other possible metabolic disorders. That’s all I know. Once I receive the order in the mail, I guess we’ll have to go in for more lab work.

My pediatrician made a referral to a local allergist, but I still haven’t heard about when the allergy testing will take place. My hope was that we could get started on this before Christmas….but we are just sitting tight and waiting.


Juggling many balls in the air,

Ginger