5 Lessons Learned This Autumn Season

We've had a bit of an eventful fall over here in the Unright household. Matt went away on a business trip for a few days at the beginning of October, got home on a delayed flight at 3:30am 😴.... and then left on another business trip for 2 weeks the next day! Phew! It was a long haul for us filled with doctor appts, illnesses, and new experiences. However, as with all struggles, lessons were learned and sleep was caught up on....eventually.



Lesson 1. I am more resilient then I give myself credit for. Or, to be quite honest about my limitations, God enables me to be more resilient then I ever trust Him to do. I was not dreading this trip of Matt's as much as I have in the past but there were many times during the 2 weeks where I threw my hands up in the air and said, "that's it! I got nothing left! We're just going to watch TV for dayssssssss"  The thought of having to feed  (and fight?😑 can I get an AMEN to the fight of feeding a 4.5 year old????) one more dinner or do one more bedtime by myself was daunting. But we made it through with God's grace and the help of many good family and friends.

This is Natalie as we were packing up the car to move into our good friend's Katie and Nate's house for a couple of days.The sass on that face was the attitude of the first week Matt was gone. I kept telling people that Natalie is like a cat, change one thing in her environment and the world is turned upside down. 😆

In other resiliency news, today I managed to bring both kids to Amelia's gastroenterology appointment in Rochester by myself! Me vs 2 kids and it actually went as well as I could have expected. There was one block tower kicked over in the waiting room when Amelia was called back but I call it a win that this was the only display of disobedience. Natalie doesn't tend to enjoy when Amelia gets all of the attention, and let's be honest, doctors are very curious about Amelia and the appointments are all about her so....Natalie tends to act out. But today she did great! Even though, naturally, I totally forgot Natalie's tablet. Instead, while I was talking with the NP, Natalie took the book we brought and pretended she was creating and performing on a podcast 😅 Love her imagination.

Lesson 2.  Amelia is a champion eater. Her new favorite food is strawberries! She loves them, I bet she'd eat them for hours if I kept putting them in front of her. She has been trying everything we give her and loving most of it. This is a huge blessing because many kids with the types of delays Amelia has are not great at eating. One thing we have going for us is Amelia's appetite, her quick learning when it comes to oral motor skills, and her openness to new foods.

Lesson 3. Sending Amelia to program was one of the best decisions we have made for her. Many of you know that I was very apprehensive about sending Amelia to "school" this young. Not even 2 yet, I was very unsure what benefit school would give her especially since it meant all of her therapy would move to a group setting and not be based out of our house anymore. Well, this child is a completely different kiddo now! She doesn't fuss in large noisy crowds anymore, she goes in the nursery at church on Sundays without her headphones, she plays with Natalie instead of cries at her volume level (😆)  She has been thriving since she started in September. She's a rolling fiend, she can get pretty much anywhere now by rolling. She pushes up on her arms while on her belly (huge deal because that moves us closer to crawling!) and she sees toys far enough away that she wants to move towards them.

She had a developmental pediatrician appointment in October that was actually very encouraging when I got over the fact that we were told she has a moderate to severe motor delay (my 2 year old can't sit.... I probably knew it was severe already but still hard to hear). She told us that Amelia's tone isn't actually that low and the fact that she's been consistently progressing suggests she'll most likely continue to progress. Still unsure of a diagnosis but encouraging and hopeful nonetheless. She couldn't answer the big "Will she ever walk?" question but I'm understanding that no answer is better than someone giving us a hard "no she won't" because we'll be working her to that end either way. Kids defy expectations all the time. God can do the impossible. We have many ways to help her start bearing weight on her feet and move towards standing/walking. Including her little ankle-foot-orthotic shoes and her stander!

At the beginning of November Amelia had a neurology appointment. Dr. Stone looked at her tone and told us the same thing as the developmental pediatrician - she has low tone but it's really not that low! She definitely has some strength so we should keep working her muscles! Amelia is a wiggly little kiddo so he took a video of her movements and sent them to the movement specialists. They'll decide whether they think it's worth it for Amelia to get some bloodwork done to test for a condition called chorea. Chorea is a type of movement disorder associated with other conditions. He doesn't think its likely she has chorea because she can control the movements but it's another step towards diagnosis, even if just ruling something out. We'll find out about whether she needs the bloodwork at the end of November. Also for the sake of rule out, Amelia will be getting an EEG done at the end of November. With her wiggly eyes and body it's a good idea to formally rule out any seizure activity. The doc doesn't think it's likely she's having seizures since I probably would've noticed occasional unresponsiveness and/or other seizure characteristics by now but it's a good thing to check given her other symptoms. So please be in prayer for that in a couple of weeks!

Today, Amelia had an appointment at the gastroenterologist (we have had a busy fall with appointments!) and she's doing excellent now with her digestive tract! She's so much happier now that she's on a healthy dose of Miralax everyday. The NP was very pleased with how soft her belly is and that she's slowly starting to dial back how much she spits up. She suspects that the reflux she has left is due to low tone. As we continue to clear Amelia out we will see if the reflux reduces even more.

Besides a couple of dentist appointments (including Amelia's first cleaning and 2 filling appts for Natalie 😳) I think that's been it in the world of doctor appointments for now. We are just thankful that most things have been good news.

Lesson 4. It is ridiculous to get medical records sent anywhere in a timely manner. Another big prayer request for us is Amelia's application to the National Institute of Health's Undiagnosed Diseases program. We applied for Amelia to be a part of a research study through the NIH and I was given the task of collecting all of Amelia's records from any doctor EVER and have them sent to Boston Children's Hospital. If Amelia were to get accepted we would have an all expenses paid trip to Boston for Amelia to get seen by some of the top doctors in the country with the hope and goal of getting us closer to a diagnosis for Amelia. We are praying that if it's God's will then she will be accepted into this program! But the process of getting records sent is a PAIN! I thought I was finally done as of last week, I had faxed 10 requests of information to 10 different doctors offices, called all to follow up, and finally (after a month and a half) found out that all had been sent to the right place. Then yesterday I got a call saying that the review committee would like all of the images of all of the testing Amelia has had (I thought those would have been sent per the ROIs I had filled out but apparently no images were sent at all!). So today I've had to fill out more paperwork to get both of Amelia's MRI images, a copy of her Whole Exome Sequencing extended results, and her metabolic workup. One MRI was done in Syracuse, the other in Rochester so I have to contact 2 radiology departments. It's a full time job being a mama who has to get records for her kiddo!! Hopefully within the next couple of weeks this will be resolved and everything will be sent on to Boston! We should find out if she's accepted into the program around Christmas as long as there are no delays in getting the images.

Lesson 5. In terms of a diagnosis we are surprisingly at peace with not knowing what Amelia has. We are pretty sure it's genetic which puts future family planning on hold but Matt and I are at peace with the unknown. Which can only be God working in my life because I don't like the unknown. The unknown is not my comfort zone. It's, in fact, my anti comfort zone. But I trust in the Lord. A song that I've been listening to on repeat since the summer is Lauren Daigle's Trust in You. The bridge and chorus are as follows (I highly suggest clicking here and listening to the whole song):

You are my strength and comfort

You are my steady hand

You are my firm foundation

The rock on which I stand

Your ways are always higher

Your plans are always good

There's not a place where I'll go

You've not already stood

When you don't move the mountains

I'm needing you to move

When you don't part the waters

I wish I could walk through

When you don't give the answers

As I cry out to you

I will trust in You.

I take comfort in knowing that if God isn't moving the mountain (Amelia's disability) then there's a reason why. I trust with 100% assurance that God could heal Amelia in a second if He wanted. But I know His ways are higher and His plans are good so if He's not healing Amelia right now then there's a reason. I trust in His grace and sufficiency to bring us through it. And not only just to survive but to embrace and enjoy the path He's put us on. Amelia is an amazing little child and I honestly can't say if her personality would be the same if she were a typical child. Would I want her healed? Absolutely. But do I appreciate her little personality the way she is? Undoubtedly. Also, I like the person I am today much better than the person I was before Amelia was born. I can already see how God's been using this little girl to change people. He's changed me for the better through her! Praise God for his mysterious but good ways. And I'm encouraged by what's He's been doing in Natalie's little heart. A few weeks ago Natalie and I were driving home from school and Natalie told me, "Mommy, someday Amelia might be in a wheelchair. And that's okay. You know why?? She can drive me around on her wheelchair! And we can buy a house that has no stairs! Wouldn't that be fun mommy?" Heart filled. What a beautiful sentiment to come from the big sister. We pray daily that God would use this to shape Natalie into a compassionate, understanding little lady. 

Thank you for your prayers and for following along our Amelia story. Hopefully it won't be another 2 months before I write my next update 😏