Goodness. This year has been full of firsts, some of which definitely came with their own challenges. Our eyes are fixed ahead as we continue to press on, up and out of this 2020 valley. Here's a recap of life with the Nantzes and Hayden's progress over the past 3 months.
Hayden continues to be just the happiest baby. She is such a joy and we cannot wait until we can share her with the world. While keeping her all to ourselves this year has been special and necessary, we're sure ready for her to meet the rest of her family and so many friends that are dying to admire all these rolls in person.
Until a few weeks ago when our Otteroo sprung a leak (we've been through 2 in about 5 months) we were keeping Hayden in the tub just about everynight since the water is such a good opportunity for water therapy. And she loves it! Our hope is to get her involved in actual water therapy sessions once we're getting out and about more.
Hayden's had her helmet a little over 3 months now and we've only got about 3 weeks to go. At least that's what they told us at her last appointment. We're excited to report it's rounding out nicely! Originally the orthotist told us 3-4 months total, but during our last measurement review they noted that her overall head circumference is still increasing, which means there's opportunity for change, both good or bad depending on whether we stuck with the helmet or not. So here we are, doing one more month hopefully! She has been such a trooper in this thing. Never complains about it at all. But mama is ready to be able to kiss that little head a little more frequently. Her hair is getting SO long, we'll probably be ready for her first pigtails shortly after we ditch the helmet! And bows, lots and lots of bows!
In August we had our third swallow study, first one here at Norton with our new team. Hayden was still showing some mild aspiration but overall doing much much better. She's been able to continue eating 100% orally. We're still in speech therapy and monitor her very closely for any changes we notice in her eating or respiratory system. She is loving purees and baby yogurt and we've introduced banana, avocado and peanut butter! She loves feeding herself and making lots of messes. Something we are grateful she can do.
The picture below is from our last swallow study. They mix barium in her milk and there is a large X-ray machine that allows us to watch her swallow in real time since the barium shows up on the X-ray. Unfortunately she does receive a small amount of radiation with each study, so we try to keep these to a minimum. We will hopefully have just one more study in the next 3-4 months to confirm a free and clear safe swallow.
August was SMA Awareness month. With it being our first as part of this community we did our best to jump in with both feet and help offer education around this disease and our journey to date through some videos on Hayden's instagram. They're still posted to her IGTV if you missed them in August and want to check them out!
Never Give Up is the motto of the Gwendolyn Strong Foundation. An incredibly important organization within the SMA community. Gwendolyn was born during a time when there were no treatments for SMA. You were given no hope (as we originally were) and sent home to love your baby as long as you had them. Through their grief they turned pain into beautiful action by creating this foundation that has raised millions of dollars, much of which played a critical roll in funding the first ever SMA treatment, Spinraza. Since then there have been two additional treatments come to market and be FDA approved, the second (Zolgensma) is what Hayden received. If you're looking for an incredible organization to stand behind, this is a great option. They also raise funds to build inclusive playgrounds where kids of all abilities can play.
A few fun things that we've enjoyed celebrating just the four of us included Hugh's birthday and our 6th wedding anniversary. We all enjoyed some of Hugh's Reese's peanut butter birthday cake! And we have a standing tradition of eating wedding cake from the bakery that made ours at the park where we said "I do". It's fun to take the kids and reminisce on the big events of the year. Although this year was maybe a little more somber. Still so much to be grateful for.
We also had some family pictures taken, which was more than eventful. But we were still able to get a few good ones.
People often ask how Hayden is doing, which is very kind. However, I'm learning that most times it's easier to give a brief blanket response like "she's doing great, thanks for asking" or "she's making strides everyday". Sometimes it's exhausting to be brief. Juggling what's easier to say versus the truth, to not be fully transparent with everything that's going on, how she's really doing or how this year has been for our family.
Hayden's weeks still revolve around lots of appointments and therapy. She does PT and OT once a week. She sees her speech therapist every other week (which has been a great transition from the 2x/week where we started when we had the feeding tube). And she sees a Pediatric Chiropractor and Cranial Sacral therapist weekly as well. This team of therapist plays a HUGE role in the overall improvement we continue to see. Not to mention they coach and encourage Hugh and I along the way and truly have become family.
Hayden has several different orthotics. Her helmet which she's in 23+ hours a day. Below is her SPIO vest that we try to get her in when she's in a seated position (highchair, etc.), but also once daily while she's laying on the floor. The vest helps give support through her spine and hips. She is now very actively rolling both ways, side-to-side which is incredible. Tummy time (with her head lifted in prone) is still something we're working on, and typically is one of the most challenging skills for kids with SMA to master. When she rolls, he underneath arm get's caught and she's not able to actively lift her head easily allowing her to free her arm. So she'll roll to her belly and then right back to her back. The primary reason for the vest is to help prevent the progression of her scoliosis while we're working on sitting. It's a balancing act though because she can't strengthen her muscles when she's being supported in the vest, but obviously we want to limit the progression of the scoliosis. Strengthening her back muscles (aka doing LOTS of tummy time) is the absolute best thing for her overall posture right now.
Recent X-rays showed that she has a mild hip subluxation. So she wears the brace below (a rhinocruiser) overnight while she sleeps to help correct that. Making sure her hip is properly in the socket is super important for when we start practicing weight bearing exercises.
From where muscles had started to atrophy before we could get her treated, her little hands have a tendency to pronate. These bi-lateral hand braces are worn during nap time right now and help promote a neutral wrist posture. Once we are able to ditch the helmet and hopefully the rhinocruiser in the next couple months, we'll probably start wearing these more frequently. We're just trying to not overwhelm her with all the bracing.
With the change in the weather we've started to see more respiratory symptoms with Hayden. So we proactively do her nebulizer as often as needed (up to every 4 hrs) and utilize her cough assist machine when she sounds extra congested. Neither of these treatments are the most fun for us or her, but she's amazing and really takes it all in stride.
Missing out seems to be the theme of our year. Weddings, engagement parties, birthdays. Date nights and weekend getaways. Family vacations. Traditions like the pumpkin patch this Fall. Swim lessons for Avery and the neighborhood pool. It's been challenging to live life on the sidelines, watching so many others carry on business as usual. The silver lining has been the incredible time our little family has had together. And we'll keep doing it as long as necessary to keep this girl smiling.
We're grateful for each of you continuing to follow along, supporting our girl. Sending you all our best as we head into the holiday season.
Love,
Hugh, Logan, Avery + Hayden
#hereforhayden @here.for.hayden
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