While a lot of what we see between Bryleigh and Will is very similar, and he shows signs of various things we've seen in Bryleigh as he continues to grow, we are doing our very best to look at them separately so that we don't miss anything or ignore obvious signs that could help us with either or both of them. Because of that, I'll just do a quick update on each of them separately, and get things back up to date with last week when it seems like every thing came at once.
For Bryleigh, we've had a pretty big year. We made the decision to get some help from a chiropractor, and that has made all the difference in the world. She has been such a blessing and has helped us gain a whole new world of knowledge, and we have seen SO much growth and change in Bryleigh because of Dr. Heather. We were able to get a pretty big allergy test done that confirmed 8 allergens we needed to eliminate from Bryleigh's diet/life completely. This included cane sugar AND stevia, chicken, paprika (think cheese-its, goldfish, hotdogs, and american cheese), mushrooms, and grapes/raisins (which is what started this whole mess 3 years ago to begin with). We also learned that Bryleigh's spine was not aligned properly, but we weren't sure to what extent and knew x-rays would come at some point. Even after completely eliminating her allergens and cleaning up her diet, we still see weekly, sometimes daily flare ups for her that vary in their severity. We are SO grateful to be in a different place than we were this time last year when it took three people to change her diaper, and all four would be in tears by the time it was over. It was excruciating, and we still see glimpses of that from time to time, but because of the knowledge and tools we have now (from supplements, to creams, to a knowledgeable doctor that is our sounding board for EVERY.THING), these don't last nearly as long.
We've updated on our sweet Will as things have come up for him that are similar to Bryleigh's because honestly, that's just easier to share. We (sadly) know the drill. We know what to expect and how to help him, we know what's likely triggering it and what could be coming in the future. He's got a lot of similarities to what we see in Bryleigh, his just seem to be amplified, came on way younger, and he's much more sensitive. For example - Bryleigh's first major reaction was to apples. These were apples we made in to pureed baby food from home and as soon as we realized what it was, we didn't (purposefully) give her apples again. The reaction cleared up within a few days, and that was that. With Will, it was simply a minor ingredient in something he was trying for the first time (Puffs), and his reaction was much more intense, and lasted an entire week. We've seen this in so many other areas as well.
Beyond him showing the same issues that Bryleigh has with food sensitivities and digestion issues, Will has had a few other areas of difficulty.
First of all, his surgery on Wednesday is something we've known was likely coming since he was 6 months. His circumcision didn't heal properly, and we tried a few different options that just did not work to make things any better. We waited to plan the surgery until we had a follow up with his GI doctor to make sure no scopes were needed at this time, which originally they said were not needed.
One thing we have not shared too openly about on social media is that Will can not eat anything beyond pureed, stage 1 baby foods. We noticed fairly early on that he had trouble with his bottles, but we had no idea what was really going on at the time. He stayed on the newborn/infant nipples (even to this day), but we really put it all together as we started to introduce food and he just was not able to swallow much of it. He would get gagged very easily, and most of the time, it ends with him throwing up pretty much everything in his tummy. Sometimes it has been by accident (sister sweetly sharing a corner of her cracker) and other times it has been with us very intently trying to get him to work on eating more. Some days, we are lucky to get him to eat half a jar of sweet potatoes. On top of the trouble swallowing, he's had some pretty quick reactions to a lot of the foods we've tried. So overall, it's just been pretty discouraging and hard to even know where to start.
But all of that gets us up to date with where we are now! His circumcision revision is scheduled for Wednesday and we have an evaluation on Thursday to get set up for feeding therapy. (He has had one evaluation previously, but the weekly therapy that was recommended for him for 6 months was quoted at $600 a week...and that's just a little out of our budget!) At his 1 year appointment, after some discussion with his pediatrician about what we see when we try to feed him, she recommended that we get a scope done to determine if Will has EoE (eosinophilic esophagitis). Since we already had a sedation scheduled, we worked VERY hard to get the scope set up during the same procedure. PRAISE GOD He went before us and worked out every single detail, even when it looked impossible. - ALL of this played out last week, and while it was very overwhelming, we feel such a peace about it and KNOW that God is in control.
Along with that information for Will, we also got a call for Bryleigh confirming that she does have scoliosis. This was not a shock to us at all, as you can essentially see/feel the curves in her spine. At her follow up GI appointment, our doctor ordered a full scoliosis series and we were able to get the X-rays done that day. We fully believe that these spinal issues are directly related to her GI issues, but we just don't know which is causing which. We are praying that as we begin to seek treatment (beginning of 2018) for the scoliosis and get things working correctly with her spine, her digestive issues will improve as well. Her GI doctor expressed some concern about an issue with the spinal cord, so she will likely have an MRI at the beginning of 2018.
I will be with you
when you pass through the waters,
and when you pass through the rivers,
they will not overwhelm you.
You will not be scorched
when you walk through the fire,
and the flame will not burn you.
Is. 43:2
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