To Rochester and Back Again

So I wanted to share some updates about new "developments" as well as some pretty awesome things that have happened over the last week. 

First though, I just have to say that I fell down the stairs tonight. OWWWW! One minute I was walking down the stairs and the next I was smacking my poor behind on not one, not two, but THREE very hard stairs before I finally landed with a loud bang. Matt was feeding Amelia so he didn't come running but I heard him mutter, "uhhh you okay....?" Later on he admitted that his first thought was, "uggggh I don't wanna go to the hospital..."  Luckily, it wasn't that bad but I'm pretty sure I re-injured my tailbone. 😒 It's fair to say today has been a long day with lots of information, clearly I'm not thinking about where my feet are going 😆

Anyway, back to this update. Where to start? Oh, I know! With the Firefly seat! This gem right here:

This is called the Firefly Go To seat. As I stated in a previous post, Amelia is 19 months old but she isn't sitting independently yet. And she also doesn't have the ability to hold herself up very well in high chairs or shopping carts; meaning I don't take her grocery shopping and she hangs out in her infant carseat during meals out. "That very boring".  Enter: this seat. This seat straps to dining chairs, shopping carts, can be put inside a baby swing, put on an airplane seat, AND comes with a floorsitter base so it can be a seat on the floor! Basically, it's a piece of equipment that can help us do the things we need to do that we've had to change up for the last 19 months. It's also $600....Guys, having a kid with special needs is EXPENSIVE! Let alone the equipment that may or may not be covered by insurance or the county, the medical bills are crazy. However, there is a charity in central New York called Charity for Children. The charity exists to help kids in the CNY area who have chronic disabilities or diseases receive the help they need; and to assist their families and caregivers with the many challenges associated with having a child with special needs. After having received our paperwork, an extremely lovely lady who runs the charity gave me a call. She got some information on Amelia, told me we qualified, and then ordered the chair for us! We now have this amazing piece of equipment that will help Amelia become more involved in the normal things other kids her age do! Praise God!!! If you're looking for a place to volunteer, run a 5K with, or give financially consider checking them out. 

Next awesome update: Amelia rolled from back to belly last weekend and she's been rolling around ever since!!! It's a huge step forward - typical children do this seamlessly by the time they are 6 months old but there is actually loads of coordination and muscles involved to help a child learn how to roll themselves over, and get over that pesky arm! The fact that Amelia has done this proves she is still progressing. All her therapists have told us this is huge. 

Now onto some medical updates. Amelia has been cranky this past week. Really cranky. And it is all caused by poop. She has such a hard time pooping. She was finally put on Miralax by her pediatrician 2 weeks ago and that helped a bit but not much. She was referred to GI and got an appt.... in September. Ugh, again about the specialists! After a frustrating physical therapy visit yesterday, where the first half she screamed like she was being tortured, created a dirty diaper, and then was a totally different kid - doing her midline head control, playing with all the textured toys, being generally the happiest baby ever. I decided I needed to call the GI and see if they could move her up. They told me they had a recent cancellation and started looking up the date and time. I was praying, please be in August but NOT during our vacation.... The receptionist came back on the phone and said, "How about tomorrow at 11?"  YES! PLEASE! So today my mom and I drove miss Amelia out to Rochester to see the NP and see if we could get down to the bottom of this. (see what I did there?) The NP told us she suspects Amelia's system just moves slower than the average system but to get her scheduled for an upper GI scan, an x-ray to make sure there wasn't too much stool in her colon, and labwork to make sure her nutrients were okay. Upper GI is scheduled for tomorrow, xray and labwork were today. Long day for all of us! Amelia was a champ during the whole thing. The only time she really lost it was during the bloodwork, but really, don't tell me we don't somewhat internally lose it when we are getting bloodwork done too? Maybe just me??  This evening the NP called me and told me that Amelia's xray showed so.much.stool. The kid is full of it. (In Matt's words, "so she's literally full of crap?") Yup. So, the NP decided that she actually needs a barium enema (how fun for her) to rule out Hirschsprung's Disease. Until recently she hasn't needed any significant help pooping, just lots and lots of fiber and daily pear juice. She also had her first BM in the first 24 hours of her life so the NP isn't convinced it's Hirschsprung's. But she said with an image like Amelia's she has to run the test for safety. She kept mentioning how much stool is backed up in poor Amelia's gut. And she said Amelia's stomach is fully distended with gas and bloating. Hence the spitting up. It makes a little more sense why she can't have a full meal without soaking herself and us! So, tomorrow we do the upper GI to hopefully rule out any anatomical reasons for the spit up. I then get the pleasure of managing a constipated baby until Rochester can get her scheduled for the barium enema. After that, it's Miralax and ex-lax for a few weeks to clear her out. Oh what fun we'll have over at the Unright house. C'mon over for some good entertainment 😂 

The most amazing thing about all of this is the timing. God worked it out perfectly for us. Natalie is at full-day summer camp this week and next week meaning I haven't had to find childcare! Natalie can have fun swimming and making Little Red Riding Hood puppets and I can be in Rochester.... getting a barium enema for my toddler 😑 Also, Matt has been swamped at work but my mom is able to join me at the appointments and my dad can pick up Natalie from camp (pretty much the best thing that's ever happened to Natalie). Praise God for His perfect timing and provision. I'll be pretty sick of the thruway by the time next week rolls around but maybe we'll be closer to answers and figuring out how to help Amelia feel better. 

Overall it's been a pretty excellent week and a half, we are thankful that God has been providing for us, through equipment and timing, and we know that He'll continue to do great things for our family through Amelia. We are 100% certain that whatever we find out from these tests God already knows and He will help us through the next steps involved; whether it is Hirschsprungs and requires surgery or she needs dietary changes and aggressive bowel movement help. Thanks for following along with us, your prayers, and your encouragement.

2 Corinthians 1: 3-5 Blessed by the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our afflictions, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too."