Muscular Dystrophy Clinic Day!

On Wednesday, February 1st, we had our first muscular dystrophy clinic day! A clinic day is where we go to the hospital and all of the specialist doctors are onsite on the same day to come and see Elijah. It was a long day with doctors coming and going all day. Overall, it went really well! Since it was Eli's first time in the clinic, he got to meet with a lot of the doctors in the clinic to just be on everyone's radar for the future. Eli met with: Orthopedics, Pulmonologist (lung doctor), Respiratory Therapy nurse, Cardiologist for an Echo and EKG (which he slept through most of - see below), Neurologist, Social Worker, Physical Therapist, Occupational Therapist, and Nutritionist. Phew! Thankfully, Eli will not need to continue to follow up with a lot of these specialists because he already has them on his team through Early Intervention, or there is no concern in their area currently. 

Our Neurologist is the one that started and runs this clinic. We really like him! He is networking and looking for research on Eli's rare type of muscular dystrophy. We are about 2-3 weeks away from Eli being completely weaned off of Phenobarbital (one of his seizure medications), and if he continues to be seizure free, we can talk about getting him off of Keppra as well. For now, our Neurologist believes that Eli's seizures were related to his fever, and this is something that he will not need medication for and should be able to outgrow. We are still hopeful that Eli will get his vision back one day, but for now he only reacts to light and dark.

With all of Eli's recent illnesses (3 viruses in 3 months!) and trying to survive through the rest of winter in cold Chicago, we are bringing the clinic's Pulmonologist on our team to continue to meet with! The respiratory therapist has taught us how to do CPT (chest physiotherapy) and use an infant inhaler at home as a preventative measure... These will help break up mucus in Eli's lungs and then help him cough it out. We will try to do CPT every day for preventative measures, and then use CPT and the inhaler more intensely when he gets sick. Our goal is to NOT end up back in the ER when Eli gets sick again :) I think that's a pretty good goal...

He was only happy at the clinic when we were holding him!

Meeting with the nutritionist was insightful! We learned that we can feed Eli watered down baby food through his G Tube so that his GI system doesn't get behind... I'm very excited about this since I've made a lot of baby food and it's just been sitting in our freezer! Also new news on the feeding front - Eli is getting scheduled for a swallow study in the near future. This is great news because it means he has made enough progress with the practice we have been doing and we want to make sure his swallow is safe enough to start trying more foods and more volume by mouth. 

Eli is finally getting back to his normal self! He stopped vomiting last weekend - thank God! But most of the week he just wanted to sleep... Opposite of our normal baby! Yet, he is still sleeping through the night and getting between 9-12 hours of sleep! Mom and dad aren't complaining about this newer trick :)


Proverbs 19:21 "Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand."

Romans 8:28 "And we know that for those who love God all things work together for good, for those who are called according to his purpose."