ER Visit... Again...

Since winter break, Elijah has been a happy guy. We've been getting some really good laughs at home. At his 10 month appointment, he had grown the most he has since he was born. Still little progress in head control, and eyesight is not back.  

Last Saturday (1/21), Elijah unfortunately started getting sick again. He got a high fever and vomiting. After a long couple days at home trying to fight off this illness, we went to the ER on Monday afternoon (1/23) to make sure nothing more was wrong with Eli. From the ER we were admitted to the PICU to pump him with some fluids and meds until we heard back on all the tests done. Elijah tested positive for Influenza A Subtype 3 (flu) and Metapneumovirus (a lung/ respiratory virus). 

 

In the PICU they were monitoring his G Tube because it was leaking, giving him fluids & meds through his IVs, and he was on intense oxygen and receiving some chest compression therapy. Monday & Tuesday were hard days for Eli, he was pretty miserable, but we began to see smiles and hear coos again on Wednesday. 

  

Today, we got to move to the PEDs floor- praise the Lord! This is one step closer to home :) If all continues to improve, we hope to be home in the next couple days. 

Praises:

•NO MORE SEIZURES! He has not had one since we were in the hospital last time. God is soooo good. 

•Our move to the Peds floor and improvement in his health

•The always amazing nurses we have here, but an extra special shout out to Mira who took extra special care of Eli (even when she wasn't our nurse!)

•Seeing smiles again

Prayers:

•No more vomiting

•Going home ASAP

•Getting rid of his nasty cough

•Continued progress with strength and growth

“But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion," says my soul, "therefore I will hope in him." The Lord is good to those who wait for him, to the soul who seeks him.”

‭‭Lamentations‬ ‭3:21-25‬ ‭ESV‬‬

“Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.”

‭‭Matthew‬ ‭6:34‬ ‭ESV

Winter Break

It has been an amazing two weeks hanging out with family, getting some sunshine, and spending so much time together with Eli! Elijah had a great first Christmas, and of course was spoiled by his family. 

We spent some time in Sherman, IL with Eric's family, then in Sarasota, FL with my family, and then back to Sherman. The two weeks flew by! Eric, Eli, and I LOVED some relaxing time in the sun. Eli's cold that he has been fighting since September finally cleared up in Florida! Unfortunately when we came back to Illinois, so did the cold... Oh cold weather - we did not miss you!

Some updates from the past few weeks...

Eli has TWO teeth on the bottom now! And those chompers are helping him start to eat food. In Florida, Eli started eating some banana oatmeal and has really been enjoying it and doing well! We're excited to hopefully try more amounts of food and different varieties soon.

Eli's strength is still very minimal. We are seeing a lot of his normal movement again, but he is still unable to hold his head up by himself. Tummy time has not been very successful since he has more interest in chewing on his hands instead of picking up his head! :)

Eli got scheduled for his first Muscular Dystrophy Clinic Day at Christ Hospital on February 1st! We're excited to see what that day holds.

Eli's G tube has been recovering very well, and we have our first follow up on Tuesday!

Prayers:

1. Getting eyesight back! Eli has lost his vision since the seizures. Everything structurally is fine with his eyes, but we believe that nerves in his brain have been damaged. This is something that can repair itself over time or there is a chance that Eli may remain blind - it's called cortical blindness.
2. Continuing to improve in his strength.... He still cannot hold his head up on his own, but has seemed to make some progress. Right now rolling, sitting, standing, and walking all seem very far off, but we hope that he will be able to do those things one day!
3. Continuing to be seizure free!!! We are weaning Eli off one of his medications that is not good for child development. In the 3 weeks we have been doing it, we are starting to see our old Eli more and more, which has been amazing! But weaning medications off is always a little nerve wrecking since seizures could start again... We are still hoping that maybe his seizures were caused by his high fever and that he will only be at risk when he has a fever.
4. Continuing to improve with his eating! Hopefully he will be able to try more food soon and start taking in larger amounts.
5. Getting Early Intervention set up as soon as possible! We have been approved for lots of therapies in our home, but it is taking a while to find available therapists, so we still do not have this set up yet. Until that is set up, we will have to continue to take Eli as an outpatient for OT, PT, and Speech.