Oh what a week!

Eli has had quite a week! It has been so nice to have Eric back in town. However, with it being my last week of work before break... he had to do a lot of the heavy lifting with Elijah's needs this week! 

The week started with PT & Speech! At Speech Eli was able to try his first swallows of purée since the seizures, which went OK... he stills seems to be pretty weak in his neck strength/ muscles, so he got tired after a few swallows. We'll keep practicing!

Tuesday we met with a Neuro-Muscular specialist who is much more familiar with Muscular Dystrophy cases. It was refreshing to meet with a doctor who feels more confident with our situation and is helping put together a plan. While he hasn't ever seen our type of MD, he said that it will be similar treatment to most limb girdle MD cases. He has begun weaning us off one of Eli's medicines since we've been seizure free for over a month and this medication is not good for child development. This Neurologist is also going to refer us to his MD clinic which meets once a month. They'll be down at Christ Hospital (about an hour from our house), but will be so worth it because we will meet with all sub specialists in one day and they all specialize in MD! What a blessing. Lastly, this Neurologist is going to reach out to Lurie's for us to see if any research is currently going on there for Eli's type of MD... one of the two research articles on Eli's type of MD had a few authors from Lurie's! Also, he trained there so has some good connections with their staff.

Then of course after a long day at the neurologist... we had to go meet Santa!

Wednesday Eli had a pre-operation consultation with Dr. Giessler- he came HIGHLY recommended for the G tube surgery... and we had to get on his schedule ASAP because he is retiring early in 2017. All went well at the pre-op appointment and Eli had his first ever surgery on Thursday (12/22)! Surgery went well and after shaking off the anesthesia, Eli has tolerated all his feeds since surgery. He is a little tender & sore, which is expected for a few days. He definitely woke up smiling this morning when I told him no more feeding tube on his face! Now he is back to his normal, talkative self!

 

We are looking forward to 2 long weeks with family and no doctor appointments! :) We hope everyone has a wonderful Christmas! 

“For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.” ‭‭Isaiah‬ ‭9:6‬ ‭ESV‬‬

 

 

EEG Results

Eli had an outpatient EEG this past week from Monday morning til Wednesday morning. I think it was more annoying for my mom and I to make sure he wasn't pulling the cords and re-gluing his electrodes than the whole experience was for Eli! He didn't really seem to notice a difference. :) After a quick review of the EEG, our neurologist called on Friday to let us know that she did not see ANY seizure activity patterns. GREAT NEWS! Neurologist is still concerned as to why Eli is having some "freezing" behaviors, but it is good news that the medication is still controlling seizures.

Eli has continued outpatient therapies right now and will be following up with GI this week... We hope to talk more about the future with Eli's NG feeding tube.

Another side note since many have asked - we did find a nanny! Only God could provide... She has experience with feeding tubes and seizures, and started last week for us. What a blessing!

Thanks for continuing to follow our story and for continuing to pray.

"And this is the confidence that we have toward him, that if we ask anything according to his will he hears us." 1 John 5:14

p.s. Eli had his first sleepover this past weekend! :) He had a blast watching Elf, baking cookies, and making his first gingerbread house!

Eye Update

Happy weekend!

Eli had a busy week this past week with lots of follow-ups from the hospital! He had an OT and Speech evaluation. Speech was happy with his progress, but we will still be on the NG feeding tube for some time. He had a neurologist appointment on Wednesday, which left us with some questions and other follow-ups. And then had an extensive Early Intervention evaluation on Thursday to receive OT, PT, Speech, Developmental, and Nutrition therapists in our home! Eli qualified for all of these and will hopefully be starting in the next month or so.

Our neurologist is concerned that Eli may still be having some seizures - where he freezes and zones out a little. We are also still very concerned about his eyesight/ tracking. He is still unable to follow objects or find us when we talk to him, so this led us to an emergency eye appointment to make sure nothing is structurally wrong. His appointment was Friday morning, and PRAISE GOD nothing is wrong structurally! But means that the issue may lie in brain function... Because Eli is still having these issues and may still be having seizures, we are doing a 48 hour out patient EEG to track what is going on in his brain and body at the same time this week. 

In the meantime, we are starting to see more purposeful smiles and giggles out of Eli, which is so nice to see again! We're still working on building strength, sleep schedule (he's become a night owl!), tracking, and feeding exercises.

Team P's new motto is "one day at a time." I'm loving this verse right now as well - "Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand." {Proverbs 19:21} God has a purpose and plan for Elijah's life, and Eric and I are blessed to walk in this journey along side of him!