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!

Genetic Test Results

Happy Thanksgiving!

We hope everyone is enjoying some time with family today, and also enjoying some yummy food. 

We just wanted to give a quick update because we received our genetic test results back on Tuesday (very early!). We have finally gotten an answer; however, it doesn't give us too much clarity. Unfortunately, Eli has been diagnosed with a very rare type of muscular dystrophy (limb-girdle muscular dystrophy - type 2S). 

There is very limited research on this mutated gene and type of muscular dystrophy because it is a fairly new discovery. Our best guess for Eli's future right now is muscle weaknesses, developmental delays, limited growth, and possible chronic seizures.

Thank you for all the prayers and support. We are SO thankful for each of you.

"Give thanks in all circumstances; for this is the will of God in Christ Jesus for you." 1 Thessalonians 5:18

Home!

WE'RE HOME! It's been a long, almost 2 weeks in the hospital so it feels really good to be home. We have a long road ahead getting used to life outside the hospital, but we are beginning to see our normal, feisty, energetic, and talkative boy more and more.

We left the hospital still on seizure medication, and still with a feeding tube. Eli has not regained much of his strength back yet and because of that he is still unable to suck/ swallow. We will be doing a lot of outpatient appointments with OT, PT, and Speech until we can hopefully have Early Intervention services in our home. 

Praises!

• We're home! Enough said :)
• Eli is starting to nonstop wiggle and move again.
• Britta's work being so flexible and accommodating to our needs.

Prayers:

• Life with a feeding tube, getting Eli's strength back, and all his outpatient therapies. Also, tolerating his feeds (not vomiting) and upping his ounce intake... Doctors would like to see him eat more ounces per day.
• Finding a nanny since his new circumstances make it too hard to go back to daycare.
• Remaining seizure free.
• And as always, patience and trust as we wait for genetic results.

Thank you so much for all of your thoughts, prayers, kind words, etc. Your encouragement continues to give us hope and faith!

Psalms 46: 1- 3 "God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling."

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."