July

July hit and summer was officially here! The first weeks of July were HOT... and we learned quickly that this didn't help Eli's worsening situation. The little boy that loves to be outside was overheating too quickly in this heat and vomiting easily. Typically bringing him outside can calm him down if fussy, but in the first few weeks of July it seemed like any time it was really hot and we brought him outside, he would vomit within minutes. Unfortunately he had to miss some of our normal 4th of July activities (like being at the lake house) because of the heat. Luckily July 6th was cooler and he could spend a day at the lake then! He enjoyed floating on the lake and almost fell asleep with the constant little waves. :)

ice cubes on at 3rd of July fest

On July 10th, Eli was invited to the first ever Neuro-Muscular Clinic at Lutheran General. Typically we have been going to our clinic days at Christ Hospital, which is about an hour away from our house and where only his neurologist practices... The rest of his specialists are through Lutheran General. We really, really value our neurologist - he has been wonderful to us! - so we've commuted to his clinic to check in with him... However, this new clinic at Lutheran General is bringing our neurologist, Dr. Coates, up to help run the clinic! HUGE win, win for us... We now get to be seen in clinic at the hospital that does all of Eli's care, with Eli's normal specialists, AND we get to continue working with the neurologist we love. This clinic on July 10th was great after a long month and a half... We left with some immediate changes and things to follow-up on.

1. Our pulmonologist reviewed Eli's sleep study... And long story short we needed to follow up with our ENT to make sure Eli's tonsils were not too large. There was possible talks of removing those and seeing if that help with his reflux/ vomiting and sleep apnea. We also began talking about the possibility of needing oxygen and monitoring at night... Not there yet, but wanting to see what our ENT said first, but will need to keep an eye on this.
2. We met with our neurologist, which is always great to check in with him! He really cares about Eli as a whole. He wants to know about his day-to-day life, his advances in therapy, issues in other areas of his life not relating to neurology, etc. We haven't done an EEG in a year, so we talked about doing one soon to just do a check-in. {fun side note... Dr. Coates' office loves that Eli wears bow ties, so anytime we take a picture of Eli in a bowtie... it has to get emailed to Dr. Coates so they can print it out and hang in their office!}
3. We added palliative care doctors to our team! Who knew these amazing people existed?! They're like social workers with a medical degree that can prescribe drugs :) They added 2 new medications to our routine that drastically helped Eli right away... 1 med was for bowel movements (BMs) - saw improvement immediately. Other med is for pain management... Something we learned is that children with Neuro-Muscular diseases can have extremely sensitive nerves in their gut... So when Eli has all this gas & issues with BMs - he basically turns in to a collicky baby, which is exactly what we had been seeing. This new medication for calming his nerves worked instantly and we started to get our happy boy back.
4. We had a quick check in with OT, PT, and Speech (because I had to get to work!)... And it was fun to talk to Speech a little about starting to give Eli more oral stimulation and tastes of food for fun!

Therapies for Eli in June were really difficult... Because of his discomfort and increased fussiness, it was hard for many of our therapists to get a good, full session in with him for anything. Also with his fussiness, his schedule was all over the place and he was at times napping during his therapy times! (Hard to do vision therapy with your eyes closed 😔) In July this began to turn for the better! As we started to get our happier guy back, he was able to participate more in his therapies again. We began to try some really cool new tools in his vision, speech, and developmental therapies. Eli began playing around with communication buttons that use language, vision, and play all together. How they work is I can pre-record a word or short phrase so that when Eli pushes the button it will say what I have recorded. We then also began to use these buttons with his adaptive switch toys! So a favorite for Eli became to push his button, which said "toy on," and it would make his toy go all at once. He definitely had a lot of fun "talking to us" through these buttons and playing! Looking forward to continue to use them.

working hard in PT

Post clinic, the 2 new meds really made a difference for Eli with his BMs and fussiness. We were getting our happy guy back, but the vomiting never decreased... We were still at least having 1 vomit a day. Then July 16th hit (the week we were going to Nashville), and Eli decided to increase his vomiting. He vomited his morning meds before we even started a feed, and then vomited a few more times during his first feed, vomited again in the afternoon & evening... And this new trend stuck around until we went to the hospital unfortunately. It seemed that Eli was worst in the morning and evening for these 2 weeks where we'd often get 3-4 vomits in the morning and 3-4 vomits in the evening. Thankfully on our trip to Nashville we had my parents with us helping out with the kids and watching them when we had Gabe's wedding festivities. Despite all the vomiting, we tried to make the best of our trip! We enjoyed the Grand Ole Opry & a backstage tour, lots of food, walking around downtown, and hanging in Franklin for a day.

When we got back from Nashville, Eli had a couple good days... Seemed to be happy to back in his home and back on his normal routine, but after 2 blissful days he went back to lots of vomiting in the morning and evening. We saw our ENT on 7/27 and he didn't have a lot of concern for Eli's tonsils. He wanted to look at the sleep study in more detail and get back to me, but he didn't believe we needed to take out his tonsils. So we're back to wondering why and where all this vomiting is coming from. We tried to enjoy the weekend with friends and family for Ava's 1st birthday party. We didn't give Eli near his normal feeds to try to prevent some vomiting, and he was just kind of out of it for the weekend and not his normal happy self. By Monday morning (7/30), I was on and off the phone with our GI doctor's nurse... All this vomiting has just not been right and we have to figure out something else to do. Eli has tried lots of diet changes, lots of things to help with BMs, and is maxed out on his reflux medication. The idea from GI was to do an upper GI x-ray for Wednesday and then see our GI doctor Thursday... Also emailing with our nutritionists all day on 7/30 (who are luckily so great at responding to me and care so much about Eli!), they began to get me worried for dehydration. So... we were in touch with the pediatrician this day too. Unfortunately by evening, Eli wasn't even keeping Pedialyte down on a slow rate... So we made the dreaded call to the on-call pediatrician, because we already knew we were going to have to take him in...

Super exhausted boy from all the vomiting... 

Praises:

• new clinic at Lutheran General we get to be apart of!
• new palliative care doctors on his team - trying to make sure he can have the best life he can
• fun celebration with little sister for her 1st birthday
• supportive grandparents!
• a career with summers off so I can be here for Eli with all of this

Prayers:

• source and reason for the vomiting so we can help stop it
• comfort for sweet Eli
• answers in our hospital stay

Not For A Moment - Meredith Andrews

You were reaching through the storm
Walking on the water
Even when I could not see
In the middle of it all
When I thought You were a thousand miles away
Not for a moment did You forsake me
Not for a moment did You forsake me

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me

You were singing in the dark
Whispering Your promise
Even when I could not hear
I was held in Your arms
Carried for a thousand miles to show
Not for a moment did You forsake me

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me
Not for a moment will You forsake me

And every step every breath you are there
Every tear every cry every prayer
In my hurt at my worst
When my world falls down
Not for a moment will You forsake me
Even in the dark
Even when it's hard
You will never leave me
After all

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me
Not for a moment will You forsake me
Not for a moment will You forsake me