Blogging for Updates!

Family, friends, & prayer warriors,

We have had an eventful 3 months with Elijah, so we are starting a blog to help keep all of the updates in one location for loved ones and friends to follow along with our sweet boy and his journey with Muscular Dystrophy.

At Eli's 5 month pediatric appointment, his unique, very small growth curve began to plateau and was not increasing as the doctors had hoped. This led to a few outpatient gastroenterologist appointments and ultimately to be hospitalized at the end of September for further testing. Eli was poked and prodded all over... We left with very few answers and some concerning test results. Because of all this, it led us to get a full genetic testing sequence done to see if there was an underlying answer to all that is going on with Eli.

Since that hospitalization, Eli has been a happy, giggly, and active little boy. He loves to roll and getting better at tummy time. He actually started to sleep a little better as well! However, he has been fighting a cold since he started day care back in September, and on November 1 he started vomiting and got a high fever. He seemed to be getting better, but then seemed very off and out of it on the night of November 3rd. Thankfully we didn't wait it out too long and called our pediatrician, and then ended up in the ER early morning on November 4th after Elijah had been having some mild seizures. 

Since our admittance in to the ER/ PICU at Lutheran General Hospital last Friday (11/4), Eli has had several EEGs, blood tests, and an MRI & MRS. Doctors have several concerns and Eli has many symptoms that are definitely making the doctors lean towards something going on genetically, which the best guesses right now are a metabolic disorder or muscular dystrophy. Eli has not been a textbook case for either of these, but all of his symptoms could be explained by one of these... So we are just waiting to get the genetic test results back to see if one of those comes up. We are not expecting those results until mid to late December.

Currently: we were moved from the PICU to the regular Peds floor last night - praise God! Eli has been on 3 seizure medications, but today we are going to take one off and try to work with the other two. Since entering the hospital last week, Eli has been on tube feedings only, so we should be meeting with a speech therapist to hopefully begin bottle feeding him again soon.

Praises!

• On to the regular Peds floor, one step closer to discharge
• Eli has been more awake and alert the past few days... We are even starting to get some smiles and giggles again
• Taking off one medication and trying to stick with just 2
• No clinical seizures since Sunday afternoon
• Flexible jobs allowing us to be at the hospital with Eli

Prayer requests: 

• Finding a balance of medication that will control his seizures, but doesn't leave Eli so drugged that he is not his normal self
• The knowledge & expertise of doctors to continue to help us figure out what is going on with Elijah
• Patience in this painful waiting time to get genetic testing results back and figure out what the future looks like for Eli
• Strength & reassurance from our almighty Father that, as always, is in control of the situation

Thank you to everyone who have already been praying, and loving & serving us so well. We are so thankful to be a part of an amazing community and even more thankful that we have HOPE in our gracious, merciful, healing, and loving God. God has a plan in all of this, and we are trying to cling to that. And as our pastor shared with us this morning, Deuteronomy 31:6: “Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you."