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!