Progress doesn’t = Answers

Back in June, Stanton received a immune boosting vaccine called the Pneumovax 23. Because he’s had so many pneumonia episodes (19 to be exact), Dr. Niolet, the allergist/immunologist, thought this vaccine could help boost his lung function. The Pneumovax 23 is a vaccine we’ll all receive when we’re 65 years old! Dr. Niolet also prescribed a daily breathing treatment called Pulmicort, again to help Stanton strengthen his lungs. We started all of this as we set off for our Disney vacation. I’m happy to report that Stanton has not had ANY respitory issues since the first of June! This is the longest we’ve ever gone without a cold, sinus infection, respiratory infection, or pneumonia. I’ve hesitated posting this….waiting on the day I’ll eat these words…..but I think it’s all really working!

Stanton’s MRI results returned normal! We are excited to not have to venture down that road anymore. Also, although some of his genetic testing points to abnormalities, all the geneticists agree that we no longer need to continue down the genetic path. We met with a metabolic genetic specialist at Tulane and he said Stanton is a beautiful, adorable child. There are oddities both in testing results and his history, however, nothing that points to or defines a diagnosis. He predicts all of Stanton’s delays will catch up by grade school! These words were gold to a mother’s ears and heart.

Stanton still has bad tummy days. That hasn’t changed. However, his ability to bounce back after a severe vomit episode has been remarkable. I’m noticing that his bad tummy days correlate with the days he doesn’t get all seven doses of his medication (one Miralax, three Erythromycin and three Prevacid/Buffer Babies compound). Stanton is a terrible medicine taker! So, I just hide the medicine in his Elecare. This is getting tricky as we are starting to address his dependence on the bottle. All of our doctors continue to say, not to worry that Stanton is still on a bottle…he’s been through so much and is finally growing and thriving…but all of his therapist say otherwise. So I’m listening to all sides and merging ideas: we offer his Elecare in a cup, but don’t force or push the issue. Sometimes he drinks a few sips, but he hasn’t yet taken in his full caloric need through a cup. Since Elecare is his means for gaining weight and “looking so healthy” I’m not ready to really rock that boat. At the same time, I don’t want to enable a behavior that is developmentally holding him back. It’s a delicate balance for sure! Once he no longer takes a bottle, I’m not sure I’ll be able to easily hide his medication. I know I need to come up with a plan for getting his medicine down without a disguise. This will be hard for us both!

Proverbs 3:5-6 “Trust in the Lord with all your heart and lean not on your own understanding; in all ways submit to Him, and He will make your paths straight.”

Stanton will become a big brother in late September! So we are also working on moving him into a “big boy” bed and slowly introducing potty training. We are looking at pre-schools and other times for him to be independent. As I worry and plan for all these changes, I am completely aware of how they are the “normal” issues all parents face. It’s a blessing to have finally arrived at something “normal.”