15 months!

Very overdue blog update - thank you for continuing to follow our journey! We appreciate each one of your prayers, thoughts, encouragement, and kind words!

bubble baths for
my cold!

So as our last blog update explained, Eli had a great month of April! Unfortunately the month of May was rough for all of Team P. Eli had probably 2 colds that lingered the entire month of May. With a simple cold for him, comes lots of vomiting and congestion... Which meant I was up 2-4 times each night suctioning out his mouth/ nose to try to prevent vomit! The timing was also rough because Eric was out of town M-F doing a huge solar install for a school district (follow GRNE Solar on social media to see some cool pics and videos!). May of course was also the end of my school year, which is always crazy, and trying to get ready for maternity leave since I won't be returning right away in August. Needless to say, the Petermans did not sleep much in May.

Thankfully at the end of May, Eric and I were able to get away for an early 5 year anniversary trip and babymoon to Bermuda! MorMor and Grumpa took on Eli duty for the week. It was wonderful to sleep again, and I think my mom was thankful to get some sleep once we returned! While Eli was with MorMor and Grumpa, his cold seemed to be getting much better... So we were hopeful for a better June! ...but we were wrong. Our first day back with Eli, he vomited a few times - seemingly out of nowhere. For the next 2 weeks, this pattern continued. Lots of vomiting, big spit ups, congestion, and coughing. However, he was definitely not sick! He's pretty miserable and sleepy when he was sick, but he was happy as can be and would often smile after vomiting. All of this congestion and vomiting unfortunately landed us back in the hospital (for less than 24 hours - praise God!!!) on June 13th. Eli gave us a good scare after choking on mucus and he stopped breathing and turned purple... This kid will always keep us on our toes (even at 8 months pregnant)! This hospital trip as I said was less than 24 hours and a much different feel than our usual visits - since Eli wasn't sick. We were able to meet with several doctors and specifically the pulmonologist who was able to confirm many of our suspicions about his mucus & congestion. With everything that has gone on in June, it definitely seems like Eli's reflux is back (he had it pretty severely as an infant). The extra congestion could be from seasonal allergies or just his muscle weakness preventing him from clearing all his mucus from past colds and reflux. Whatever is going on with him, we left the hospital hopeful that his new medications will help! One med for reflux and one med to dry up his mucus. After 5 days of taking these, we are seeing that they are working! No vomiting for a week :) There is still some lingering congestion and small spit ups here and there, but nothing like what the past month and a half has been for us. I felt like I was doing laundry every day to clean vomit towels, sheets, and clothes...

Last week, Eli had his 6 Month Review for Early Intervention - time flies! If we haven't said it enough already, we LOVE our Early Intervention therapists and they have been such an amazing resource for us in this crazy time. While progress has seemed very slow with Eli's therapies, it was SO nice to have all 6 (yes I said SIX) of his therapists in one room at the same time to discuss the progress that has been made! December to now has seen its many challenges for Eli, but despite all of those, he IS making gains! Here are some of the highlights from our meeting and things we are remembering to celebrate with our little superhero:

• Eli used to always have his hands in fists (best bet to explain this that he does it for a sense of stability/ control), but we are seeing them open more and more... which means he is relaxing more, being more aware of his body, able to grab toys, practice feeding himself, etc. We were beginning to talk about getting him hand braces through Early Intervention to help him keep his hands open, but we are not going to do that anymore!
• Eli is able to stay on tummy time more and more (although new teeth often makes it more fun to chew on his hands than pick up his head)! He used to easily get frustrated after about 10 seconds, but now can just lay on his tummy comfortably and is working on picking his head up for longer periods of time and higher!
  
• At the end of May, we had a very excited Saturday morning when we got some rolls out of Eli! This still doesn't come natural to him when he is on his tummy and needs some reminders of how to roll, but LOVES when he is able to do it on his own... Eli is very proud of himself when he achieves something!
• Eli's Developmental Vision Therapist has been a great resource to the whole team. To many it seems like Eli is still seeing nothing, but his Vision Therapist has assured us that he is seeing some things and using his vision at times! We're learning that the color, distance, and positioning can all affect how we get his visual attention. He is definitely using his other senses as well to help him understand his surrounding - especially his hearing.
  
• Eli's Developmental Therapist is beginning to teach him how to activate his own toys, and when he is able to... again he is so proud!
• Unfortunately his Speech and Nutrition therapies have suffered with all the congestion for the past month and a half... however, Speech is teaching Eli to feed himself with a spoon and he loves it! Again, Eli is very proud when he gets the spoon in his mouth, and he likes to play with the spoon :)
  

On Friday, Eli had his 15 month appointment at which I had to fill out a developmental survey. While I probably could have sobbed as I circled "not at all" for EVERY. SINGLE. ANSWER... I instead laughed my way through it. God has given us a sense of peace about where Eli is right now and how to celebrate the small things. I laughed while filling it out because no test or piece of paper can tell me how special, awesome, loved, and brave our little Eli is. This past month I finished a book called "A Different Beautiful" by Courtney Westlake (highly recommend!!), and in this book she talks about raising her daughter with special needs and what it feels like to fill out the developmental scales... When we assess our children on these standardized tests, "we can never learn to accept and celebrate anything that is outside of our realm of normal. We can never fully appreciate the amazing uniqueness God has placed in this world." (p. 77) We are learning to thank God every day for the amazing uniqueness Eli has brought to this world and we are so excited to watch him find God's purpose for him in this life.

Lastly, if you want to find Eli this summer... He most likely be in our yard enjoying the weather! He LOVES being outside and this swing set and pool have been a nice addition to our yard for him :)

Praises:

1. New medications helping already with his vomiting!
2. Progress in Early Intervention therapies!
3. Me being off for the summer and maternity leave - having lots of time to be with Eli and watch him learn and grow.
4. Eli has become quite a good sleeper - becoming more consistent with naps (and easily falling asleep for naps!) and sleeping 10-11 hours at night... If you knew Eli as a baby, many would have thought these days would never come.

Prayer Requests:

1. Constipation... This has been an on and off an issue for Eli since birth. It got very bad in May - he was in a lot of pain and fussy most of the day because his tummy was bothering him. We unfortunately had to start Miralax (which can be pretty normal with MD and muscle weakness); however,  I would like to try to have him on the least amount of medications as possible! The Miralax worked like a charm and often too well, so we are now trying essential oils and massages to make him more regular. If possible, we'd like to not have to go back to Miralax consistently! 
2. New medications to be the help we need for the congestion and vomiting.
3. Eli to be able to start taking more purees by mouth so that we can lessen his time on the feeding pump.
4. Continuing to build strength and better head control - this is all still pretty dependent on his mood and we'd like to see more consistency in his head control/ strength. 
5. Team P preparing our heart, minds, and home for a new addition next month!

Mother's Day picnic!

Twinning on Father's Day

Aunt Hanna was my nanny for a week in May!

 Visited Aunt Meg & Uncle Nate for a short week! I had a lot of fun and even took my first pool nap!

Found out that my sis may be in the 75%ile!

Met my friend Rory from AZ!

Romans 5: 1-6 "Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. For while we were still weak, at the right time Christ died for the ungodly."