Slow Winter = Busy Spring!

This past Winter has been a slow one for our family, which has been enjoyable! It has been such a huge praise that we have survived this crazy flu season with no trips to the hospital. Eli has recently gotten his first bad cold, which has led to about 3 weeks of coughing and vomiting... but we are finally at the end of that! Yet, even in the slowness, we have been busy doing lots of planning for a busy Spring! Some quick updates and exciting news!

Rhodes School

Insureon

February 28, 2018 was Rare Disease Day! This has become a fun holiday in the Peterman household. This year it was extremely fun to have people celebrating it near and far! I celebrated at my school with another coworker whose daughter has Spina Bifida. Auntie Callie decorated her office and BAKED 100 cookies to share with coworkers and bring awareness! And of course our besties shared some love and support in their Team Eli tees - so cute!!!

Eli in the past 3 weeks has been trialing real food and juices through his g-tube! This has been a goal since last year, but with the instability Eli had in 2017 with reflux and vomiting, food got put on hold. There are food pouches that are made for g-tubes, so after trialing individual foods, he has now been taking small amounts of Real Food Blends that is chicken, rice, orange juice, and carrots! The goal is to get him off of formula eventually, but this will be a slow process. The idea is to get him on a more natural diet for a 2 year old, which could ultimately help with his digestive issues.

Eli attended his first vision-impaired music class and loved it! This was through his vision therapist's organization.

We have some big things coming up for Eli and would appreciate some prayers! First, we will be doing another brain MRI at the end of March. This will be to follow up on his past two and see the size of his brain. Has it continued to shrink, stayed the same, or God-willing even grown?! Second, on 4/4 we will be going back to his Muscular Dystrophy clinic! We have not gone since February 2017, so it will be good to check in with all the clinic doctors again. At the clinic we will meet with his neurologist who will be able to go over all of his brain MRIs in detail. Third, we got a call from the National Institute of Health (NIH) last week!!! After finding out about his brain atrophy in October 2017, our genetic doctors told us about this opportunity and asked if they could send in his paperwork. Essentially they will do research on Eli to find out more about his rare diagnosis, and for us it will be a free second opinion on him. We will be going April 17-20! The whole Peterman crew will be heading to Bethesda, Maryland to meet with Dr. Carsten Bonnemann and Dr. Reghan Foley and run some tests on Eli (most of which he has already done before). Fourth, we have officially sent in paperwork to our insurance to try to get our one and only 2nd opinion at Mayo Clinic in Minnesota. This is a reach as our insurance would probably like us to go somewhere more local like Lurie Children's Hospital in Chicago, but we are shooting for Mayo due to their multidisciplinary team approach. It will be SO helpful to have multiple specialists all working together to find the best plan and treatments for Eli. Prayers appreciated that this application gets approved!

Some more amazing opportunities in the works... nursing support and aquatherapy! Eli has been approved for aquatherapy with our insurance, however, our location has a waitlist. Praying it won't be long! We know Eli will LOVE this therapy. Also, our amazing hospital outpatient care coordinator referred us to a program through the Division of Specialized Care for Children (DSCC). This is the only program so far that we have had a chance to get some nursing help through - most other programs we can't qualify for due to our income and insurance. However, this DSCC program is based on points... And Eli definitely qualifies with his diagnosis, medications, and breathing & digestive issues. So we are in the waiting process of hearing back on our application and finding out how much nursing support we will qualify for! Very exciting news, as we would love to eventually have a night nurse to be able to watch him closer at night.

Praises:
~ Both babies are sleeping better at night!
~ Eli started real food and more natural things for his digestive system.
~ Got invited to come to the NIH!
~ DSCC program!

Prayers:
~ Brain MRI - for growth!
~ Mayo Clinic application to get approved!
~ Real Food Blends to continue going well for Eli and beginning to transition to more RFBs and less formula soon.
~ Acquatherpy and nursing to begin soon!
~ Eli's continued overall growth and development. He has recently grown 1/2" in length!


Colossians 2:6-7 "Therefore, as you received Christ Jesus the Lord, so walk in him, rooted and built up in him and established in the faith, just as you were taught, abounding in thanksgiving."

heading to the park!

LOVED his first time sledding!

their favorite time of day

Valentine's Day <3