Team P's Journey with MD: 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