Team P's Journey with MD: Fall 2018: trying to grow!

Once we left the hospital in August, we faced (and are still facing) many challenges with Eli's health in the midst of a busy season with lots of changes. Unfortunately looking back, it is safe to say this has been the most challenging 6 months of Eli's short little life.

We got back home from the hospital on 8/11/18 and I went back to work on 8/13/18... Which means Eli was left in the care of our nannies while he was in a new & fragile state after his GJ surgery... He was still vomiting and he was now getting fed solely through his J tube. Tough week going back to work, but it was helpful to have 2 sets of hands... We actually had our old nanny training our new nanny that first week of me back to work, which gave me a little peace of mind. A lot of August and September was trialing formulas and increasing medication for Eli to make him comfortable. We went through 3 formulas to find one that didn't make Eli really gassy and had to increase some medication to help his reflux and pain. Even though Elijah is completely fed by his Jtube (in his intestines), he still was refluxing and vomiting his meds (which go in his Gtube/ stomach) and/ or his stomach acid. Made for a very uncomfortable and unhappy Eli - not our normal boy. Ultimately once we increased his reflux medication in September - we were able to get him to stop vomiting/ spitting up! And by the end of September we found a formula that made him the less gassy...

August and September were full of marathon training for me and lots of work for Eric! However, we were really thankful to find out in September that Eli's nursing hours increased from about 30 hours a week (that we were using for night nurses only) to about 80 hours a week! We applied for an increase after his August hospitalization and all the changes he had - being attached to 2 cords 24/7 and needing oxygen at night has made him a little more complicated to look after. It took a while to find some more nurses to be able to cover these 80 hours... because ultimately we realized what would be best for our family was to have Eli be watched by a nurse during the day while we were at work and then to send Ava to an in-home daycare! After several weeks, we found a day-time nurse and were able to start this plan. One of the best decisions we've ever made!! I feel so much better having Eli watched by nurses (we've been blessed with some really good ones too!), especially during this really complicated time in Eli's life. It has also been the best decision for our social butterfly Ava, who loves to go to daycare every day and see her 3 new boy besties.

The month of October is a little bit of an amazing blur... Obviously the biggest thing for us was the marathon. It truly doesn't feel real. It was an amazing weekend with so many surprises, accomplishments, and Eli support. The weekend started with the marathon expo where it was fun to begin seeing all the awesome Team Eli members who were coming in to town for the marathon. Saturday we had the Team Momentum dinner where Team Eli was awarded the #1 fundraising team (~$78,000), I was awarded the top fundraiser (~$18,000), Team Eli was the biggest team ever created, and Hanna (my sister) surprised me and was the keynote speaker... A hard secret she had to keep! Hanna told a room full of hundreds of people Eli's story, our story. Many happy tears were cried. Sunday: the big day... We didn't have ideal weather - we all got poured on for a few miles... Yet everyone who started the marathon finished that day. Hanna, Meghan (my sister-in-law), and I all ran the ENTIRE marathon side by side and finished under 4 hours... our goal, however, with the rain and dodging in and out of people the whole race, we ended up running a lot faster than we all trained and a whole extra mile. After the race we had a Team Eli after party of relaxing and eating... And to top it off, Eli had a great weekend that whole weekend. He loved soaking in all the people and even had to be taken out of the team dinner multiple times because he was laughing and yelling too loudly. :) Once the marathon passed, Team P all battled illnesses the rest of October. We had stomach bugs, fevers, and colds. Eli and Ava were also both teething - both breaking in molars! Once the marathon passed, we were hoping for relaxing family time... but took a while for us all to get over sicknesses!

By the end of October we began to worry about Eli's nutrition, progress, and weight loss. When we left the hospital in August his Jtube feeds were 50% formula & 50% pedialyte. The goal when leaving was to continue increasing formula and decreasing pedialyte to get him to his full strength feeds and hope that he will grow/ gain weight back after loosing weight since July... Typically getting to full strength feeds takes a week or 2, not 3 months. Since August, September, and October threw us many challenges with increasing his formula (continued vomiting, changing formulas, sickness, and teething) - we weren't giving up on getting to full strength feeds yet... But starting to worry about the amount of weight he had lost and the lack of progress we were making on his feeds.

The month of November was a lot of getting healthy, and trying to continue to increase his formula in his Jtube! In November he did get some awesome new equipment from Early Intervention - a stander and a new bath seat! He loves his bath seat... But still getting used to all the muscles it takes to use his stander... In November we also started the process to get fitted for AFOs and getting him plugged in to a mobility clinic to get fitted for a custom wheelchair! All big things to start getting the big boy ready for turning 3 in March and heading to... wait for it... SCHOOL!

Praises!

TEAM ELI! The amount of runners, donators, and supporters we had was UNBELIEVABLE. Only could have all been orchestrated by God!
New equipment and a great team getting us ready for school!
Lots of family time and support through a long season.

Prayers:

Weight gain through Jtube
Managing gas & BM pain

Colossians 1:9-14 "And so, from the day we heard, we have not ceased to pray for you, asking that you may be filled with the knowledge of his will in all spiritual wisdom and understanding, so as to walk in a manner worthy of the Lord, fully pleasing to him: bearing fruit in every good work and increasing in the knowledge of God; being strengthened with all power, according to his glorious might, for all endurance and patience with joy; giving thanks to the Father, who has qualified you to share in the inheritance of the saints in light. He has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son, in whom we have redemption, the forgiveness of sins."

We did get to take a trip to MN for Labor Day weekend and took the kids to the state fair. Eli enjoyed sleeping by the pool more! :)