MRI Results & MD Clinic

We've had a busy 2 months! March 17th our little guy turned 2 years old! Eric and I can't believe we've only been parents for 2 years... It feels like we've been at this for much, much longer. We celebrated our little superhero in the best way we knew how - to throw him a superhero birthday party with family!

Just a week later, I was on Spring Break from school, so I got to spend lots of time with my babies! We took a quick trip to MN to visit Nate & Meg, tried to spend lots of time outside (bundled up - where's Spring?!), and relax a little :)

At the end of my Spring Break, Eli had his 4th brain MRI. It was an early morning, but a pretty quick procedure. He did MUCH better waking up from anesthesia this time. We waited in recovery for about an hour (like normal) for him to wake up, make sure his breathing was OK, and that he tolerated his feed... In the past, he is still pretty cranky for a while, but this time, as soon as I started rolling him out of the hospital he was cooing! Back to his normal self as soon as we got home.

Put your feet up and relax bro!

The next week, we had Eli's MDA Clinic that is run by his neurologist - who specializes in neuro-muscular diseases. His neurologist filled us in on his MRI results, which showed that his brain has stayed the same since September 2017. Good news/ bad news. It is great that his brain has not continued to shrink, but we would obviously like to see some growth. However, these results make sense to us because we haven't seen any significant developmental changes (good or bad) in Eli. From this clinic we were also given some follow-up tests to check up on Eli... 1) We will be doing a swallow study to check the functionality of his swallow. He passed a swallow study on 2/14/17 and he was doing some purees by mouth last Spring; however, a lot has changed since then. He has not had any food by mouth since May 2017, he often seems to forget to swallow, and he sometimes chokes/ coughs on his silva/ mucus. So an updated swallow study will be helpful to see how he is managing all of this. 2) We will also be doing Eli's first ever sleep study. This is something our pulmonologist warned us we would eventually have to do, but said we would probably want to wait as long as possible... Essentially in case the results show us that there is some scary or worrisome breathing while Eli sleeps. He has been doing lots of gasping in his sleep at night, so we just want to make sure he is taking in enough oxygen all night long.

The weekend of 4/7 & 4/8, Eric was out of town for a wedding and Eli had some vomiting, but seemed still happy. We occasionally have vomiting as we are changing and increasing his diet. However on 4/9 after falling asleep, he woke up vomiting and couldn't stop for about 45 minutes and it ended with him having a short seizure. Luckily we didn't end up in the ER and Eli was able to fight the quick stomach bug at home for the week... but we were left with an exhausted little guy and are still trying to work back to his normal feeds (and get back to trying to increase his calories).

We recently got back from our trip to the National Institutes of Health (NIH)... I will try to get another blog update up soon about this trip! We learned a little and made some great connections with doctors.

Praises:
~Brain not shrinking more!
~Trip to NIH
~Great medical team working with Eli

Prayers:
~Favorable swallow study and sleep study results
~Receiving an answer from our insurance about Mayo Clinic - we are still waiting to hear if they will approve us to go there for a second opinion
~Putting some weight on Eli... He has not gained weight in a year, but he has recently started getting a little longer. We want to continue to make sure his nutrition is enough to help him continue to grow and hopefully develop more.

"O Lord, our Lord, how majestic is your name in all the earth! You have set your glory above the heavens. Out of the mouth of babies and infants, you have established strength because of your foes, to still the enemy and the avenger. When I look at your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is man that you are mindful of him, and the son of man that you care for him? Yet you have made him a little lower than the heavenly beings and crowned him with glory and honor. You have given him dominion over the works of your hands; you have put all things under his feet, all sheep and oxen, and also the beasts of the field, the birds of the heavens, and the fish of the sea, whatever passes along the paths of the seas. O Lord, our Lord, how majestic is your name in all the earth!" Psalms 8

Story time at the library

Easter 2018

 MDA Green Day - March 16, 2018

Slow Winter = Busy Spring!

This past Winter has been a slow one for our family, which has been enjoyable! It has been such a huge praise that we have survived this crazy flu season with no trips to the hospital. Eli has recently gotten his first bad cold, which has led to about 3 weeks of coughing and vomiting... but we are finally at the end of that! Yet, even in the slowness, we have been busy doing lots of planning for a busy Spring! Some quick updates and exciting news!

Rhodes School

Insureon

February 28, 2018 was Rare Disease Day! This has become a fun holiday in the Peterman household. This year it was extremely fun to have people celebrating it near and far! I celebrated at my school with another coworker whose daughter has Spina Bifida. Auntie Callie decorated her office and BAKED 100 cookies to share with coworkers and bring awareness! And of course our besties shared some love and support in their Team Eli tees - so cute!!!

Eli in the past 3 weeks has been trialing real food and juices through his g-tube! This has been a goal since last year, but with the instability Eli had in 2017 with reflux and vomiting, food got put on hold. There are food pouches that are made for g-tubes, so after trialing individual foods, he has now been taking small amounts of Real Food Blends that is chicken, rice, orange juice, and carrots! The goal is to get him off of formula eventually, but this will be a slow process. The idea is to get him on a more natural diet for a 2 year old, which could ultimately help with his digestive issues.

Eli attended his first vision-impaired music class and loved it! This was through his vision therapist's organization.

We have some big things coming up for Eli and would appreciate some prayers! First, we will be doing another brain MRI at the end of March. This will be to follow up on his past two and see the size of his brain. Has it continued to shrink, stayed the same, or God-willing even grown?! Second, on 4/4 we will be going back to his Muscular Dystrophy clinic! We have not gone since February 2017, so it will be good to check in with all the clinic doctors again. At the clinic we will meet with his neurologist who will be able to go over all of his brain MRIs in detail. Third, we got a call from the National Institute of Health (NIH) last week!!! After finding out about his brain atrophy in October 2017, our genetic doctors told us about this opportunity and asked if they could send in his paperwork. Essentially they will do research on Eli to find out more about his rare diagnosis, and for us it will be a free second opinion on him. We will be going April 17-20! The whole Peterman crew will be heading to Bethesda, Maryland to meet with Dr. Carsten Bonnemann and Dr. Reghan Foley and run some tests on Eli (most of which he has already done before). Fourth, we have officially sent in paperwork to our insurance to try to get our one and only 2nd opinion at Mayo Clinic in Minnesota. This is a reach as our insurance would probably like us to go somewhere more local like Lurie Children's Hospital in Chicago, but we are shooting for Mayo due to their multidisciplinary team approach. It will be SO helpful to have multiple specialists all working together to find the best plan and treatments for Eli. Prayers appreciated that this application gets approved!

Some more amazing opportunities in the works... nursing support and aquatherapy! Eli has been approved for aquatherapy with our insurance, however, our location has a waitlist. Praying it won't be long! We know Eli will LOVE this therapy. Also, our amazing hospital outpatient care coordinator referred us to a program through the Division of Specialized Care for Children (DSCC). This is the only program so far that we have had a chance to get some nursing help through - most other programs we can't qualify for due to our income and insurance. However, this DSCC program is based on points... And Eli definitely qualifies with his diagnosis, medications, and breathing & digestive issues. So we are in the waiting process of hearing back on our application and finding out how much nursing support we will qualify for! Very exciting news, as we would love to eventually have a night nurse to be able to watch him closer at night.

Praises:
~ Both babies are sleeping better at night!
~ Eli started real food and more natural things for his digestive system.
~ Got invited to come to the NIH!
~ DSCC program!

Prayers:
~ Brain MRI - for growth!
~ Mayo Clinic application to get approved!
~ Real Food Blends to continue going well for Eli and beginning to transition to more RFBs and less formula soon.
~ Acquatherpy and nursing to begin soon!
~ Eli's continued overall growth and development. He has recently grown 1/2" in length!


Colossians 2:6-7 "Therefore, as you received Christ Jesus the Lord, so walk in him, rooted and built up in him and established in the faith, just as you were taught, abounding in thanksgiving."

heading to the park!

LOVED his first time sledding!

their favorite time of day

Valentine's Day <3

It’s all a blur...

Well... I went back to work in the middle of October, which is why there hasn’t been a blog update in a longgg time. Sorry in advance for the long and overdue update!

Mom's 1st day back to work was a success!

Going back to work was very tough. I had to get up early, put on real clothes, and do my job again... but mostly it was hard because I had to leave my babies and trust them to someone else’s care... after being inseparable for almost 5 months. After receiving Eli’s bad MRI news about his brain, we seriously talked about how could I stay home with our sweet babies or at least have me only work part time... but with those ideas came several complications - the biggest being that we need my amazing health insurance for Eli. I talked with, cried to, and tried to figure out a plan with my very kind boss (who was trying to help me in any way possible), but ultimately it was best for me to go back to work full time. So after a crazy summer of hospitalizations, tests, and doctor appointments... I was going to be away from my Eli Monday - Friday, all day. (Up to this point, Ava had been such a good baby that I wasn’t even worried about her! I knew we’d miss each other, but she went with the flow of things so easily.) Luckily I went back to work on a Wednesday, so I only had 3 days back to work before the weekend. The first week the kids did amazing with our nanny and I was SPOILED
by my coworkers. It really is easier to leave your kids for the day knowing they’re in good hands with your nanny and when you work with extremely sweet, caring, and thoughtful people! It only took us a few weeks to get in to our new routine of mom working, and only took Ava a few weeks to realize that she needed to hang out with me at night now since she didn’t get to see me during the day... Eli thought he’d join in on the night time fun as well, and until recently had been waking up for hours in the middle of the night to just talk. Eric and I will sleep again someday right??? Sleep training starts now...

The past 3 months have honestly been a blur and not Eli’s easiest months. Thankfully we have not been admitted in the hospital, but did have 1 ER visit. Eli has continued to struggle with his reflux, constipation, and gas. So much so that the past 2 months he has been a rather cranky boy instead of his normal happy self- which is heartbreaking to see. Unfortunately there just is no magic dose of Miralax that seems to be working for him, so we continually have to play with that and other things like prune juice or suppositories. Because of these ongoing issues, we have seen our GI doctor a few times and the last recommendation was to do Miralax, pear juice, and a prescription medication for constipation. We have not started these yet because as always with Eli... he’s a complicated guy! He had 4, yes FOUR, teeth break through around Christmas. All at once. So some of his fussiness has probably been due to his teeth and not only his GI issues. So again, we will wait out this phase and see if we can continue with our normal routines, and get our happy boy back! 

Thankfully Eli has remained relatively healthy! I have gotten 2 bad colds since going back to work... and at one point Eric, Ava, and I were all sick and Eli seemed OK! Huge praise since his colds can typically land him in the hospital for a week or so for dehydration concerns and vomiting. Kathy, our guardian angel, somehow got him approved for monthly synagis shots again this winter! (Synagis is essentially like a flu shot but for RSV.) We believe that this must really be helping him! It’s a miracle he still gets it because it is typically hard to get approved as is, and it is only for babies up to 12 months old! (He’s almost 22 months - where does time go?!). Another amazing God thing... In this whole journey it’s truly amazing to see what blessings and people God has put in our life. So many things happen to us that we are left only saying, “Wow. That was totally God” ...because nothing else can explain it. 

His 1 ER visit happened on Thanksgiving... in true Eli fashion- he seems to like to go on holidays. Eli woke up early on Thanksgiving, so Eric brought him downstairs to cuddle and try to get him back to sleep. Eric described to me later that morning that Eli had a weird episode that morning where he was zoned out and his arm raised up... after which he took a long nap. When Eric told me this, we didn’t think much of it because it had been over a year since Eli had any seizures (11/7/17 marked 1 year no seizures!)... and he has frequent zone outs all day long that aren’t seizures. So we packed up for the day to see my parents new condo in the city and enjoy Thanksgiving with my family. In the middle of our condo tour, Eli had another weird zone out that we couldn’t get him out of and his arm raised up again. Immediately after he started to dose off... 2 of these episodes in one morning with all the napping after... it was clear these were seizures. After a call to our pediatrician, Eric was on his way back up north to the ER at Lutheran General... Thankfully our Neurologist was very quick to answer his page and just gave instructions to up his nightly dose of Keppra- so the boys could get outta there! They were back in time for Thanksgiving dinner, both very hungry for it after not eating all day.

Eli discovered he LOVES his toes!

Eli continues to receive many therapies every week from Early Intervention. He had his 1 year review in December where we all met as a team and went over his goals. While there is not as much progress as we all thought there would be a year ago, we now know a little more about Eli and how his diagnosis is affecting him. So the fact that we HAVE seen progress is a miracle itself. His therapists are so kind & loving. They do so much for him and our family. Through EI, Eli received his first wheel chair! It’s amazing- can be lowered, raised, tilted, and rolled all around our house. He’s still getting used to it as it makes him sit up a little more and use his core & neck muscles... things he wasn’t used to being able to sit in his bouncy seats or lounging on the couch. 

And lastly... the most amazing thing that’s happened in the past 3 months... is that somehow Hanna and I have convinced over 30 people to run the Chicago marathon with us this year for Team Eli and MDA!!! We are so excited, in shock, and thankful. We have team members who have never run before to have only done a 5k or who have done a 1/2 marathon. Our team is comprised of some of our biggest prayer warriors, family, best friends, small group members, Hanna’s awesome BU & St. Olaf friends, Eli’s EI therapists, and more. Hanna and I decided to run together for Team MDA after watching my bestie Megan do it in Chicago 2017 marathon for Eli... but we never thought we’d get so many crazy people to join us. We have officially become the biggest racing team in MDA’s history and we still have more interested. Eli is one lucky and loved little dude. {if you want to know how you can sign up for Team Eli and join us for an amazing 26.2 mile run- message me!}

helping w/ cough assist

If you follow the #EliAndAvaTales on social media... you’ve seen how much they really do love each other. Eli smiles when he hears her- whether she’s talking or crying. And Ava really cares for Eli. If she’s fussing, playing, or talking and hears Eli start to have a cough attack or start to cry... she stops what she’s doing to look at him and see if he’s OK. She’s very understanding and waits patiently if we have to put her down to help Eli. She also CAN’T get enough of him if he’s near by her... she wants to eat his hands, arm, hair... whatever she can get. While Eli gets annoyed sometimes, he mostly tolerates it and lets her play with him. It truly makes a momma’s heart melt. I know Eli will be comforted and cared for by his little sis his whole life.

Praises:

~ no hospitalizations in 4 months!

~ no seizures since Thanksgiving

~ those crazy 4 teeth popping through and hopefully some relief in the near future for Eli 

~ getting in to a schedule with work and having Eric in town more after being gone most of November and December

~ family time around the holidays and time in FL with our family

Prayers:

~ comfort for Eli... whether it’s his teeth or gas or constipation... relief so that we get our always happy boy back

~ sleep... both Ava & Eli make it difficult for Eric and I to get much of that, but lately it’s been Ava keeping me up most of the night... so sleep training has begun. Eli still coughs throughout the night, so we have to keep an eye on him and make sure he doesn’t reflux in his sleep, choke, or vomit. It has been a while since he’s done any of those things in his sleep- praise the Lord!

~ seizure free streak continues...

~ Eli’s overall development. Brain growth. Muscle strength. Vision. 

From the bottom of our hearts, thank you for following our journey, your prayers, and your love/ support. We hope everyone had a wonderful Christmas and Happy New Year! Petermans are praying for continued spiritual growth & contentment in 2018. 

“Not that I am speaking of being in need, for I have learned in whatever situation I am to be content. I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me.”

‭‭Philippians‬ ‭4:11-13‬ ESV

Ava's Dedication

Ava’s Dedication verses we picked for her:

“And so, from the day we heard, we have not ceased to pray for you, asking that you may be filled with the knowledge of his will in all spiritual wisdom and understanding, so as to walk in a manner worthy of the Lord, fully pleasing to him: bearing fruit in every good work and increasing in the knowledge of God;”

‭‭Colossians‬ ‭1:9-10‬ ‭ESV‬‬

We added another boy to our crew - we love you Clay!

Halloween!

 We switched our rooms! Eli's in his big boy bed and Ava's in the crib.

 Florida life...

MRI Results

Well... To start... Can we celebrate that we did NOT end up in the hospital in September?! Praise the Lord! We broke the track record after being admitted 3 months in a row this summer... However, it has still been another long month unfortunately. Thankfully Eli has been back to his normal happy self for the past few weeks, so we believe he has gotten over the 3 viruses he had in August! He has also FINALLY broken all 4 of his molars, which also makes him a much happier guy. While his molars are in and his viruses are probably gone... his cough has still lingered, which means that it is most likely due to his reflux. He has a pretty significant cough attack almost every hour of the day and night - these cough attacks are awful. He turns bright red, chokes/ gags, struggles to breathe, and is trying to get something up or out of his throat. Sometimes he succeeds and spits up or vomits up his feed, but often he just swallows the acid & formula back down. 

smiling at his blood draw

Part of his follow-up from the August hospitalization was to check on his blood levels. In the hospital he had a few high levels of blood work that caused the Pancreatitis diagnosis; however, they were never able to confirm that with imaging because when they did an ultrasound in the hospital his gas blocked the views... He is a very gassy boy :) In the hospital those blood levels were coming down, so when we did follow-up blood work out of the hospital we were surprised to hear that those levels shot back up high again. This led us to a rush ultrasound the day we got back the blood work to see if there was any luck to see his pancreas this time... No luck, gas was in the way again. So the next step to see what was going on in his whole GI system was to do a MRI with anesthesia. Eli had 2 MRIs in November 2016 due to his seizures and he was due for a follow-up brain MRI this November to track the progress of his underdeveloped brainstem. So, luckily with the help of our guardian angel/ outpatient care manager, we were able to get both MRIs done at the same time and only have to do anesthesia once!

The MRIs were a success and the nurses said he did well with his anesthesia. Still, it is never fun... He was very miserable waking up from the anesthesia for hours afterwards, but was back to his normal (but sleepy) self in the evening. 

The results... Well, everything in his GI system is NORMAL. Good news/ bad news. Great that this is all working properly, but frustrating at the same time to not know why his reflux is so bad. The poor kid is on 3 medications for his reflux, hooked up to his feeding pump most of the day and all night to run his feeds slowly, and does breathing treatments 3 times a day. While he had reflux as an infant, he did not from December 2016 - May 2017... So we just don't know why he has it so bad now.

His brain MRI unfortunately was very concerning. As I mentioned, the MRIs from November 2016 showed an underdeveloped brainstem at the time... This MRI showed there was no development of his brainstem since then and also no development in his cerebral hemispheres and cerebellum. So he has 3 significant areas in his brain that are just not growing (significantly smaller than other areas of his brain) and not developing. These areas are responsible for many functions of our daily lives, but the ones that are probably significantly hindering his development are: vision, motion, motor, balance, focus, nerves sent to make us breathe, and nerves sent to help us swallow... These were obviously very hard results to hear. Our neurologist is trying to focus on the positive - Eli is defying odds already and able to do a whole lot more than his brain scan shows us he should be able to do. Our neurologist also said that there is no evidence of a cause for the lack of growth... blood flow to these areas is good, no sign of stroke, etc. So we're back to not really having answers and just "blaming" these results on his rare diagnosis of MD.

As humans we try to find the silver lining... Look for the positives. As Christians, Eric and I try to find the joy of the Lord in all situations and are able to do that because of the hope we have in Christ... the victory has already been won and this time on earth is not all we have. While it is heart breaking for us to watch all what Eli has to go through, we also know that this was not God's original design, and pain on earth has a purpose. Somewhere, somehow... God is using our amazing Eli to change and softened someone's heart, to encourage someone, to strengthen someone, or to show someone what it looks like to have joy in the midst of a trial. (We all know this boy has got some joy to share!)

When Eli was diagnosed with this extremely rare type of MD, it was devastating. I saw many dreams and hopes for my baby boy's life flash before my eyes - Eric won't be able to coach his football team, I might not be able to dance with him for our mother/son dance at his wedding, he might never develop to his age level... But, we rallied and surrounded ourselves in truth and love from our family, church family, and friends. We also looked for the best in situations and celebrated every small piece of good news. While he is diagnosed with this rare form of MD, it is a type of limb girdle MD... So really it should just affect his limbs - he should still be able to have a quality life. It's not supposed to be affecting his GI system, his breathing/ lungs, and now his brain. But we will rally again. We will find the silver lining - he is already defying odds. He is happy as can be, which is only explained by the joy of the Lord in him. He is beginning to make vision connections. He's as chatty as ever (often waking me up bright and early to numerous stories). He loves to wiggle and dance. Test results can tell us one thing, but we will just push on with the happiest MD boy in the world. He gives us strength and hope. While I was crying after receiving the results... I was hugging Eli and telling Eli how much we love him and how we'll do whatever we can for him... and he just sat in my lap laughing and smiling. So we're going to "pull an Eli" and just laugh and smile... and take one day at a time with our miracle boy. 

So what now? In the immediate we are trying to get his reflux under control. We're switching formulas again (the real food blend formula made him vomit almost every time) and I'm going to be making some thin purees to go through his g-tube so that he can try real food in his stomach. We're also in the process of getting our specialist doctors to agree on a second opinion location. We are trying to find a team of doctors who have at least heard of his type of diagnosis or maybe have even have seen someone with his type of MD. This will mean us traveling somewhere in the near future, but hopefully we can find a team of doctors who can give us more information on his type of MD.


Praises!
~Eli's already defying odds!
~Eli is happy as can be.
~Ava is the sweetest and a relatively happy baby (and still a great sleeper at night!)
~Eli's vision seems to be coming back! He is definitely seeing some things and making intentional glances at voices, people, sounds, and objects.
~For Kathy, our guardian angel/ outpatient care manager... she helps us navigate through everything and always wants the best for Eli.
~Eli's amazing Early Intervention therapists who always believe in him, push him, keep us hopeful, and offer up their ideas to help.
~Britta's work being so understanding and helpful with my transition back to work and future doctor appointments for Eli.

Prayers:
~Finding a second opinion team of doctors with experience in Eli's type of MD
~New formula and real food being the answer to stop Eli's reflux
~Britta going back to work in 2 weeks... finding peace and comfort about leaving my babies, and hopefully having Eli be in a more stabilized state for our nanny
~Eli's overall development and growth.
~Sleep! While Ava is only up once a night :), Eli keeps us up every hour or two with his coughing and gagging.

Hebrews 13:5b “For God has said, ‘I will never fail you. I will never abandon you.’”

2 Corinthians 4:17-18 “For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”

fun at the lake with my best buds!

first early intervention play group!                       

                      

 time in NE visiting friends & family!