One Month Dose-iversary

It's been a little while since we've shared an update. I thought what better time than on her One Month Dose-iversary!! It's been an entire month since Hayden received her life saving Zolgensma infusion. While it's so hard to believe that she's already 8 weeks old TODAY, in other moments time stands still. What a unique time we're all experiencing amidst Covid-19. I can assure you that navigating this challenging onset of changes for our world as we know it has proven to be even more interesting with an immunocompromised newborn.

Many of you have been so kind to check in on us and ask how she's doing. The most common question we get is, "so, is it working?". The short response is yes, we very much believe it's working. We've been told that every patient responds to this one-time infusion differently and at a different rate. So it's really just a waiting game at this point. Her first year of life will be a huge indication to the success of the treatment and what life will look like for Hayden. Absolute best case scenario she will just be a little behind on hitting her milestones, rolling over, sitting unassisted, standing and eventually walking (we pray!). As we've shared though, we've had a small set back with the feeding tube. This is something that the other newborns treated by her neurologist have not experienced. We pray this is just a speed bump in her healing process.

We have had the feeding tube for 3 weeks now. We are so hopeful that we are perhaps halfway through our stint of our time with the feeding tube. We are pushing hard for another swallow study to be completed soon. 6 weeks is typically the earliest they will consider reassessing, and as you can imagine getting any sort of elective procedure like this scheduled at the hospital right now is next to impossible.

We've quickly learned that with Hayden's SMA, and the multi-disciplinary approach that her case requires, every doctor has an opinion and most of the time they don't always totally align with each other. This just adds another layer of complexity to our job as her parents to advocate for the best course of care when different doctors are making conflicting suggestions. Our pulmonologist has encouraged us to not be in a hurry to get rid of the NG tube, but of course his primary concern is her lungs, and keeping them fluid free. Each discipline we're seeing also seems to want to prepare us for the possibility of a G-tube. This would be a slightly more permanent feeding tube that would require surgery and would be placed in her stomach. Obviously our goal is to remove all medical intervention and to not have it escalate to this. The longer Hayden does not eat by mouth the harder it will be to resume that skill. Luckily right now the NG doesn't seem to bother her too much. But as she gets stronger, she most likely will become more interested in this tube attached to her face and may start trying to pulling it out, which would probably create even more discussion around a potential G-tube if we are constantly having to re-insert her NG. Even more reason why we are so prayerful that we can get it removed soon, because we *do* want her getting stronger!! Right now we are removing her tube weekly to switch sides and give her little face a rest from the tape. Her feeds are every 3 hours, so we at least get to enjoy her sweet face tube and tape free for 3 hours a week! The day of the week we make "the switch" is always the worst. I have to pump myself up for it. Even though we've inserted the tube several times now, it never gets easier. But we continue to remind ourselves that this is what is best for her right now. She has gained a whopping 2 lbs over the last 3 weeks of having the tube which is great, and exactly what we had hoped to see!

We haven't been to Riley in several weeks now. They are running a very tight ship with all of this Corona business going on. We've been getting her weekly labs drawn at Norton Brownsboro. We've been thankful to not have to drive all the way to Indy each week. Even still, getting out and about, especially to a hospital right now feels extremely dangerous. Going to the hospital for her labs is sometimes the only time we leave the house for the week. It's definitely a reminder of all the weirdness currently going on. There is a nurse that meets us at the hospital entrance to take all of our temperatures and ensure we're not experiencing any symptoms. What I'm sure is normally a very busy facility, is a ghost town, only the necessary personel, everyone gloved, gowned and masked. Like a creepy Sci-Fi movie. We are ready to return to normal!

We have been so fortunate that each week her labs have looked exceptionally good, and we've only had to increase her dose of steroids once, and really that was probably just to compensate for her weight gain. We hope to hear back today on her fourth set of labs post infusion. If all is well (and we anticipate they will be!) we will be able to move to labs every other week and begin to wean her from steroids! Steroids can sometimes make babies extra irritable so we're looking forward to getting these meds out of her system. Also, coming off the steroids will allow her immune system to jump back into gear and make her a little less susceptible.

We are still keeping up with ALL of her doctors visits through "tele-medicine". How fancy, right?! These are basically just Zoom calls with all of her physicians. It's been pretty convenient to have all of her doctors visits from the comfort of our home... and Hayden just snoozes through them most of the time!

We continue to be blown away by the love and support we continue to receive. We have had people reach out to us that we haven't been in contact with in over a decade! The cards, gifts, and words of encouragement truly have brought us through some of the darkest days of our life. For those of you praying, could we ask that you specifically pray that when we're able to reassess her swallow study that we'll receive a positive verdict and that we can ditch the feeding tube and resume to normal feeding, safely! Getting rid of that thing would do a world of good for this momma.

Last chance to get your Here for Hayden t-shirt and/or donate to our CureSMA fundraiser. Only 5 days left!! Be sure to stay up to date with the Facebook event page regarding her walk as we are working to reschedule our date for once we're all no longer social distancing.

T-shirts and donations here:

https://www.customink.com/fundraising/here-for-hayden?fbclid=IwAR04r3Ezwtknh0tWziTUtfIQXHBKZeP0m0JBr5JgAhEN3j4YlqpITZn91Vc

The Facebook event can be found here:

https://www.facebook.com/events/147315836470786/?notif_t=plan_user_joined&notif_id=1583628456151380

Wishing you all a safe and healthy quarantine!!

Love,

Hugh, Logan, Avery & Hayden

#hereforhayden

p.s. How are you surviving this crazy time?? Puzzles, screen time, coffee, and a few adult beverages are seeing us through. Hugh likes to remind me that bourbon kills the Corona ;) Cheers!