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."

Good Month!

Eli has had a great month! This is the first month in a LONG time that he has not vomited and has been relatively healthy!!! Because of this, we are starting to see amazing gains. Eli is definitely getting stronger and doing better at tummy time. He is also starting to wiggle and move more on the floor. He loves music, bouncing, and dancing! He also LOVES this nice weather we've had... He could live outside if we let him!

Our nutritionist has been a great resource this month helping us with his tummy pains, constipation, and trying new/ more food. As of this week, Eli is officially one of the few 1-year-olds on a DIET! ;) He has been gaining so much weight this month that we don't want to start hurting his other therapies (PT/ OT) or limit his strength/ movement gains. His "diet" will be starting to do more food by mouth for calories and less formula through the G-tube! We are very excited for this change because Eli has been liking taking purees by mouth, and we'd love for him to start to wean off of G-tube feeds.

A few weeks ago, Eli enjoyed his second Easter. It was a wonderful weekend at church and then being with family. Eli got to meet his cousins from out West and loved meeting his younger second cousin, Amelia!

Eli had a 24-hour EEG in the hospital on Monday/ Tuesday this week (4/24-4/25) and it went WELL! He is still seizure free since the beginning of November (the only time he had seizures was the 3 days in the beginning of Nov). Our neurologist was able to compare this EEG to his last EEGs, and he saw progress in that there are more organized patterns and faster patterns than the EEGs before. Eli still has some pattern changes that make him at risk for seizures, but we are NOT looking at an epilepsy disorder and this is something he should grow out of. Because of all this good news, we are starting to lower his last seizure medication... he will do another (shorter) EEG to update on progress after the slow 8 week lowering medication schedule... and then can maybe start looking at removing him completely off of this last medicine. God is good!

Psalms 145: 18-21 "The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desire of those who fear him; he also hears their cry and saves them. The Lord preserves all who love him, but all the wicked he will destroy. My mouth will speak the praise of the Lord and let all flesh bless his holy name forever and ever.

1 Year Old!

Eli has had another few eventful weeks... Never a dull day with this superhero! On March 17, 2017 we hit a very big milestone... Eli is 1!!! To celebrate this amazing day, we had lots of family in town and a big sail-ebration in his honor on the 18th. Eli did NOT enjoy having lots of people in his house for his birthday party, so he was quite the opposite of his normal self- cranky, serious, and silent! However, it was still a wonderful party where he was spoiled with love, snuggles, and gifts. The grandparents of course  went overboard with a new personalized wagon, swing/ slide set, and lots of adorable clothes!

Eli had his 1 year appointment at his pediatrician on 3/20 and he finally has made it on to the charts! Eli's weight is now on the 3rd percentile! Still working on that length... he is definitely a Helwig. 

Of course his birthday celebrations couldn't stop after the weekend... our small group threw Eli a surprise birthday party at group on 3/21! Somehow he appropriately matched his ADORABLE cake :)

On 3/22 Eli had some more Early Intervention evaluations- Developmental Vision therapist and Nutritionist. This 90 minutes could have only been orchestrated by God because the end result was just amazing! Eli qualified for vision and nutrition therapy... The nutritionist who evaluated him is wonderful and completely understands him, his needs, and his story. She felt that no one else would really be able to work with him the way she wants him to be worked with, so she is taking him on her caseload WEEKLY even though she doesn't have the time, is above her caseload limit, and lives in the city. (Weekly nutritionist visits is unheard of in Early Intervention, but God knows that this has been such a frustration for me because Eli is an easy puker, we are hearing 10 different amounts of ounces we should be giving him, and he's trying more food now!) Eli will also now receive vision therapy every other week... After our past Early Intervention evaluation (on 12/1/16), it took about 2-3 months for therapists to actually start working with Eli once he qualified for a therapy. Not going to be the case for the vision therapy... because the wonderful woman who evaluated him had a client drop from her caseload that day and is picking him up! She starts on Monday! She also told us some good news... she is noticing that he is making very short vision connections. So the vision is there, we just need to strengthen the connections and keep practicing with him. God. Is. SO. Good! It was a wonderful Wednesday :) Eli now has 6 Early Intervention therapists, 5 of which are weekly visits to our house and 1 that is biweekly. Team Eli is growing and is stronger than ever!

A few weeks ago I had my 20 week appointment for Eli's little sister. Happy to report that all is going well with her development and I no longer have to go to specialists for this pregnancy!

This past week was my spring break from school. We drove down to Eric's hometown to spend some time with family, and Eli got some extra special time with MiMi since she has offered to watch him while Eric and I got away for a few days :)

Coming up soon, Eli is going to have a 24 hour EEG. Since we weaned him off of one of his seizure medications, we have noticed some tremors in his legs mostly. We can stop them and they don't last too long, but we aren't sure what's causing them- reaction to no more phenobarbital? Part of his MD? Not sure. Prayers for no more seizure activity found on the EEG appreciated!

“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

‭‭John ‭16:33‬ ‭ESV‬‬

Overdue Update!

Since our last hospital visit, Elijah made a full recovery! Before last week, he is back to his normal, happy, chatty self. However, this past week he have been fighting a bad cold again.... Unfortunately he is an easy puker, so it makes even the common cold a long, tiring, and scary week with sporadic vomiting sessions. Praise God we seem to be on the end of this cold and we did not end up in the hospital!!!!

On his first Valentine's Day, Eli passed a swallow study! Which essentially looks to see if he is swallowing different consistencies safely. Since he has passed, we are now allowed to start trying different foods and more quantities by mouth! It has been fun to make baby food again :) He has tried and tolerated bananas (his favorite!),  pears, apples, carrots, prunes, and sweet potatoes. Currently eating is his favorite thing, and he lets us know when he wants food with his vocalizations! To help him with some chowing down are his 2 new teeth! He now has 2 on top and 2 on bottom. We've been pretty lucky with his teeth - he is a little cranky for a day, but handles them well when they come in! Passing his swallow study also means that he is now approved for Speech Therapy through early intervention to start in our home. He had his first session last Monday.

Our other exciting news is that Eli is going to be a BIG BROTHER! In the midst of all that has been going on with Elijah, we found out that we were pregnant. After genetic testing, we learned that we are having a GIRL and that she will only be a carrier of the muscular dystrophy gene {she would need both of our genes to have MD and she only got 1}. Talk about a trying time for me - all I could do was trust that the Lord is GOOD and His plans are greater than our own. We are so excited to add a healthy girl to our family! Well at least I am... I think the boys are still trying to wrap their heads around an evenly divided house.

Elijah had many emotions about a sister...

"You're sure it's a girl, mom?!"

A few weeks ago, Eli got to show some special guests around the city of Chicago. Eric's business partner, Jess, and his family came to spend the weekend with us! Eli loved having some extra moms (Tracy, Hayden and Nash) around and I think the girls loved playing with a "real doll!" We ate amazing Chicago food, Eli braved the Skydeck, he went down his first slide, and enjoyed the beautiful weather all weekend long.

Last weekend, Eli got to attend his nanny's wedding! It was a fun and special event. He had to dress for the occasion...

Praises:

1. We have completely weaned him off of Phenobarbital!!! He is only on Keppra right now and will hopefully be able to wean off of this later this year. (anti-seizure medications)
2. No hospitalization with this illness!
3. Getting more Early Intervention services set up - he now has a PT, OT, and Speech therapy that come weekly to our house. In a few weeks he will have a Developmental Vision evaluation that can hopefully set up him with vision therapy. We are close to getting a developmental therapist that he will also have weekly.
4. Our growing family and that SHE is only a carrier of MD :)

Prayers:

1. Eli's vision... He still is only reacting to light vs. dark. We believe that God can heal his vision completely and will continue to pray!
2. Strength... He is starting to control his head a little more, but still needs a lot of work in controlling his body and becoming more aware of his movements.
3. Getting over this cold - still coughing some, but we are 48 hours without vomiting!

This song is my go to right now... Can't get through it without crying!

"It Is Well"

https://www.youtube.com/watch?v=j4taAN4QtbI