Muscular Dystrophy Clinic Day!

On Wednesday, February 1st, we had our first muscular dystrophy clinic day! A clinic day is where we go to the hospital and all of the specialist doctors are onsite on the same day to come and see Elijah. It was a long day with doctors coming and going all day. Overall, it went really well! Since it was Eli's first time in the clinic, he got to meet with a lot of the doctors in the clinic to just be on everyone's radar for the future. Eli met with: Orthopedics, Pulmonologist (lung doctor), Respiratory Therapy nurse, Cardiologist for an Echo and EKG (which he slept through most of - see below), Neurologist, Social Worker, Physical Therapist, Occupational Therapist, and Nutritionist. Phew! Thankfully, Eli will not need to continue to follow up with a lot of these specialists because he already has them on his team through Early Intervention, or there is no concern in their area currently. 

Our Neurologist is the one that started and runs this clinic. We really like him! He is networking and looking for research on Eli's rare type of muscular dystrophy. We are about 2-3 weeks away from Eli being completely weaned off of Phenobarbital (one of his seizure medications), and if he continues to be seizure free, we can talk about getting him off of Keppra as well. For now, our Neurologist believes that Eli's seizures were related to his fever, and this is something that he will not need medication for and should be able to outgrow. We are still hopeful that Eli will get his vision back one day, but for now he only reacts to light and dark.

With all of Eli's recent illnesses (3 viruses in 3 months!) and trying to survive through the rest of winter in cold Chicago, we are bringing the clinic's Pulmonologist on our team to continue to meet with! The respiratory therapist has taught us how to do CPT (chest physiotherapy) and use an infant inhaler at home as a preventative measure... These will help break up mucus in Eli's lungs and then help him cough it out. We will try to do CPT every day for preventative measures, and then use CPT and the inhaler more intensely when he gets sick. Our goal is to NOT end up back in the ER when Eli gets sick again :) I think that's a pretty good goal...

He was only happy at the clinic when we were holding him!

Meeting with the nutritionist was insightful! We learned that we can feed Eli watered down baby food through his G Tube so that his GI system doesn't get behind... I'm very excited about this since I've made a lot of baby food and it's just been sitting in our freezer! Also new news on the feeding front - Eli is getting scheduled for a swallow study in the near future. This is great news because it means he has made enough progress with the practice we have been doing and we want to make sure his swallow is safe enough to start trying more foods and more volume by mouth. 

Eli is finally getting back to his normal self! He stopped vomiting last weekend - thank God! But most of the week he just wanted to sleep... Opposite of our normal baby! Yet, he is still sleeping through the night and getting between 9-12 hours of sleep! Mom and dad aren't complaining about this newer trick :)


Proverbs 19:21 "Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand."

Romans 8:28 "And we know that for those who love God all things work together for good, for those who are called according to his purpose."

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.

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