May & June

The beginning of May started with a continually worsening Eli in the evenings. We had gotten on a really good feed routine, breathing treatments, and relatively good sleeping routine for Eli. However, for some reason in the beginning of May... Eli only wanted to be held in the evening and lots of crying until he fell asleep. We soon learned after his nutrionist came for her visit on May 10th that he was struggling with growing pains! For the first time in a long time, Eli grew! He made it to the 20lb club and he also grew 0.75” in 2 weeks (1.5” total in the past 3 months before this). 

After the growing pains subsided... we got our normal happy guy back... but not for too long. By the middle/ end of May, Eli began struggling with bowel movements (BMs) again. It seems like every time we find something that works for him, it only works for a few weeks to a month. When he struggles with BMs, he becomes gassy and in pain. And when he is gassy... his reflux or vomiting is worse. It’s a bad cycle he’s been struggling with since last summer. Toward the end of May, his reflux began to change... he used to just spit up or vomit fairly easily and it would just be all over his bib or himself. At the end of May his reflux turned in to more forceful vomiting, which is actually quite scary for us. He whines, foams at the mouth, heaves for :30 or so, and then forces his feeds out his mouth/ nose... which can be scary for breathing issues & aspiration. This new reflux sometimes was just one quick vomit, but could more usually be 2, 3, or even 5 small vomits in a row... Which elongates the scare of breathing struggles. On bad evenings, which happened once every week or two, Eli would vomit on and off for an hour. Unfortunately once this new reflux started, it was here to stay. He would vomit at least once a day from the end of May until we were hospitalized at the end of July.

At the end of May Eli completed a sleep study, which was a recommendation after his Neuro-Muscular Clinic. Eli snores and gasps at times during his sleep, and he’s also had what seem like night terrors at times. All of these things on top of his diagnosis gave reason to make sure he’s getting enough oxygen while sleeping. His results were abnormal, but not extremely alarming... he didn’t require immediate oxygen during the night, but did have some slight apnea and a low dip in the 70s. We ended up talking about these results more at his next clinic in July!

June rolled around and mom was home for the summer! The first few weeks were honestly a little rough as we were getting used to our new routine... June was unfortunately the month that Eli’s fussiness continued to increase. As we kept trying new things for his BMs... we kept not finding the perfect balance to help him. Our normal happy guy was just uncomfortable. He wanted to be held most of the day, bounced, lots of burping, and needed lots of time with his heating pad stuffed animal (Georgia the giraffe). This was tough to juggle with 2 kids! While Ava is miss independent for the most part, by the end of long days with Eli- Ava would get pretty attention-deprived. 

With the gassiness and discomfort increase, so did Eli’s vomiting. In June, he typically had 1-2 heaving vomits a day. Because of all these GI issues, we saw our GI doctor in June. Unfortunately the only recommendation at this time was to increase his Erythromycin, which he had been taking for a year to help empty his stomach. He takes it 3x day, so we drastically increased this dosage hoping it would help empty stomach, produce more BMs, and slow down vomiting. At this point, Eli was still gaining weight... so vomiting was concerning but not being taken very seriously. The first few days after the medication increase, we actually had the opposite effect...  Eli had no BMs and we got an extra cranky boy. We then let our nutrionists be our experts and help us figure out some things we could do in his diet to help with BMs... the answer was to try Benefiber and the vegetarian Real Food Blends instead of the chicken one (because it’s naturally higher in fiber). These changes worked for a little bit... and then didn’t. Next new trial came in July!

We got GREAT news in June... we qualified for a DSCC program earlier this year that will provide home nursing hours, some home improvement funding for medical needs, and coordination of care... and in June we were finally at the end of the approval process and got to have nurses start. Through amazing friends and contacts we were referred a few awesome nurses to help us get started. I can never thank one of my co-workers, Suzy, enough for sharing her amazing bestie with us! She’s quickly become one of Eli’s besties and #1 fans. It has been so amazing having nursing support... it gave Eric and I some restful nights of sleep and gave me some freedom during the day to do some things with just Ava! We are still looking to add more nurses to our team so that we can fill and use our 30 hours of nursing a week... so send any Chicagoland nurses you know our way! :)

In June, the whole Peterman family got to attend the Chicagoland Team Momentum Chicago Marathon kickoff run & potluck. Eli was introduced to the staff & team of runners as an honorary hero! We had a great morning outside and meeting some of our other MDA team members. 

Praises:

• growing! 
• amazing nutrionists who are constantly brainstorming ideas to help Eli 
• nursing support starting!!!!
• Aunt Hanna Home for the summer

Prayers:

• comfort and answers for BMs & vomiting
• finding more nurses to care for Eli in our home

Romans 8:24-30 "For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience. Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.

Pool Nap!

Mother's Day!

Zoo Playdate with our besties!

Ready for marathon training to begin :)

Father's Day!

NIH Trip

Very delayed update about the NIH! It was a wonderful trip at the end of April. We didn't really know what to expect and who all we would be meeting, so we were pleasantly surprised!

Tuesday April 17th:

Flight to DC! Flying with Ava this time around was not any easier than the first time back in December... She needs to move and see and touch everything on a plane. Elijah of course was great! Once we landed, we headed to our rental car and went straight to the NIH campus, where the testing and housing was located. We checked in at the Children's Inn where families stay. The place was AMAZING! It had play rooms (plural), outdoor playground, game rooms, kitchens, exercise room, etc. Ava frequented the play rooms often to get out some energy. Once we put our stuff in our room, we headed right to the clinical center to get checked in so we wouldn't have to do that in the morning. Once we got our wrist bands, we headed back to the Children's Inn where dinner was being served. During the week, the Children's Inn has volunteers come in and cook dinner for the families. Tonight's theme: Greece! After dinner we all turned in for an early bed time after a long day of travel.

Wednesday April 18th:
We got to the clinic bright and early, and started with vitals. After that we began to meet some of the doctors who would be researching Eli. They did a physical exam and listened to me talk for about an hour to learn all about Eli. They knew his paperwork inside and out, but still wanted to just learn as much as possible about him. They were very sweet, informative, and knowledgable! After this he had a series of testing - most of which he has already had done before. He did a muscle ultrasound, GI ultrasound, drew blood, EKG, and then a skin biopsy. Skin biopsy was a new one for him and made me a little nervous, but ultimately sounds like it will be really good for learning about him. They will grow his skin cells and try to learn more about him at the cellular level. If our doctors in Chicago (or if we ever go to Mayo Clinic) need more information about his cells, the NIH can provide cell samples and information. The lead doctor on Eli's case specializes in neuromuscular diseases and neuro-genetics... Both great things for Eli! After the first day of testing, we enjoyed a family run and some time at the park. Another dinner was provided, and it was time for bed again!

Thursday April 19th:

Not as early of a morning and not as busy of a day... Eli only had some skeletal x-rays, an (interesting) eye exam, and an echocardiogram. All of his testing was done at the NIH Clinic Center, which was a 5 minute walk from the Children's Inn. It made it easy for Eric and I to tag team and bring Ava back for naps! Eli did amazing with all of his testing... Usually had a smile on his face, and the echocardiogram even had him cracking up! The eye exam was interesting because he was very tired and started to get cranky... the kid can't see much anyways, so add those elements together with a flustered doctor = interesting. He didn't really cooperate for anything she was trying to do (but most of it was too advanced for him anyways), so we went home for a nap :) Thursday night there was another family dinner - France themed.

Friday April 20th:
We were free to fly back on this day, but we figured if we were flying all the way here... We better take the kids to do some touristy things! So we headed in to DC for the day. We walked "the mall" and saw the White House, Washington Monument, WWII Memorial, and Lincoln Memorial. We ended the day with Georgetown Cupcakes!

Our results from all the testing showed us nothing new... however, it will be helpful to continue consulting with the team of doctors when needed in the future. From conversations with them, they are not diagnosing Eli with anything new. They believe his diagnosis of Limb Girdle Type 2S is accurate, and they are continuing to learn more about his specific gene mutation. Unfortunately they believe his type of MD behaves more like a mitochondrial disorder. Which explains all of the struggles we have been having in the past year that do not relate to a Limb Girdle MD. His brain atrophy, his breathing struggles, loss of vision, his digestive issues, the length of time it takes him to recover from illness, etc. - all of these are much more characteristic of a mitochondrial disorder.

Moving forward, this team of doctors is here for us whenever needed. They can fly us back to DC, do testing at Lutheran General, or just consult with us when we have new symptoms or aren't sure what to do. It was really encouraging to hear over and over again that they are very impressed with what our team of doctors has already done for him (especially with such a rare disease). They were very happy with all the breathing treatments he does every day, the amount of therapies he is getting, and the machines he already has. They said it is very typical that patients first come to the NIH with none of these things in place.


Praises from this trip:

• amazing new team of doctors to get to know Eli and provide us information to best care for him
• learning little pieces of information that explain his puzzle a little better
• hearing that we are doing everything we basically can be doing for him already!!!
• successful trip flying there and back with our 2 crazy kids
• a little time away as a family

Prayers from this trip:

• beginning to understand more of what his diagnosis will mean and coping with what he may continue to struggle with

Jeremiah 17:14 "Heal me, O Lord, and I shall be healed. Save me, and I shall be saved, for you are my praise." 

1 Chronicles 16: 23-31 "Sing to the Lord, all the earth! Tell of his salvation from day to day. Declare his glory among the nations his marvelous works among all the peoples! For great is the Lord, and greatly to be praised and he is to be feared above all gods. For all the gods of the peoples are worthless idols, but the Lord made the heavens. Splendor and majesty are before him; strength and joy are in his place. Ascribe to the Lord, O families of the peoples, ascribe to the Lord glory and strength! Ascribe to the Lord the glory due his name; bring an offering and come before him! Worship the Lord in the splendor of holiness; tremble before him, all the earth yes, the world is established; it shall never be moved. Let the heavens be glad, and let the earth rejoice, and let them say among the nations, “The Lord reigns!”

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