Hi friends, thanks for checking in with us. Thought we'd touch base and share what's going on in our world and with our girl.
While many of you have probably returned to rather normal days, we continue to live incredibly cautious. Hayden has come so far and we'd hate for a bug of any sort to sweep our house and set her back on the progress she's making. This just means that outside of medical professionals, Hayden has only met a handful of people at almost 6 months old. We hate this for her and for our extended family and friends. But right now, it's what's best for her. Our next clinic with her team of doctors is in September and we're eager for them to see her progress and update us on their opinion of how socially distanced we should continue living. Until then, we're getting lots of family time in here at home. Avery has a newly fenced in back yard where he can run wild and free. It's been a game changer for sure!
The month of June was such a turning point for Hayden. We celebrated her 3 month "dose-iversary" from her Gene Therapy treatment and truly felt like each and every day she was showing us something new. Albeit small changes that probably only we would notice, improvements nonetheless. And when the days of very little to no movement at all are still pretty clear in your memory, the smallest movement feels like a miracle. Her head and trunk control are coming along really nicely. According to our PT, head control is key to any additional milestone movement, i.e. rolling over, sitting unassisted, etc. It all starts with good head control. So that is exactly what we are focusing on. Lots of tummy time! She has come so far. I remember in the early days of tummy time, we would barely get her in the position before she would squawk with discontent. But now she will tolerate several minutes at a time and is working so very hard to hold her head up in the prone position.
Because of Hayden's limited mobility at birth (she couldn't even turn her head side to side) we have ended up with a little Plagiocephaly (flat head). Luckily we've been given the go ahead to treat it with a helmet. Most likely she'll be in it for 3-4 months, but the good news is that there *is* an end date in sight with the helmet and she'll come out on the other side with a nice round melon! yay!
We continue to work hard to offer Hayden the best foundation possible for regaining the strength and muscle she lost prior to her treatment so she has the best opportunity for success. She enjoys physical therapy and occupational therapy once a week and has been seeing a specialized speech therapist to help with the feeding tube.
This past week we finally had our consult to get her scheduled for a sleep study. Lots of SMA kids use a bi-pap while they sleep. Hayden doesn't show signs of distress while she sleeps, and actually is a really great sleeper all-around. Sleep apnea presents in a variety of forms and if she needs the extra support in her sleep, to ensure she's at her best while awake, we want to make sure she has that. Our study was scheduled for October but we actually got called in this past Tuesday to fill a cancelation. We'll hear back from the doctor in a couple weeks with his conclusions. So glad we were able to get this done so quickly to establish a baseline for her. We should have had one months ago, but it was canceled when Covid broke loose.
Additional equipment that has joined our repertoire recently include a cough assist or vital cough machine. This machine mimics a cough for Hayden since her lungs and surrounding muscles might not be strong enough to create a forceful enough cough. We use a suction machine to clear anything that the cough machine may bring up. Additionally she uses a nebulizer once a day as a preventative treatment for her growing lungs. Another huge milestone that we've conquered is completing necessary bloodwork for the foreseeable future. All babies who receive GT are monitored for 3 months out to ensure their liver enzymes don't flare up. But we've had been having bloodwork done every other week for almost 5 months now. Hayden had some elevated levels which required some additional observation. She also was a terrible stick and it typically took multiple attempts to get what they needed. These were exceptionally painful days. We're so glad they're behind us.
18 weeks. 126 days. 750+ feeds. We fed our baby through a tube.
This has been one of the hardest parts of our SMA journey to date.
Feeding your baby can be some of the sweetest times, especially in the early newborn days. It’s such a special time to bond with your baby. To learn their hunger cry. And to help fill their little growing belly. As mothers we were created to nurture and eating is just an instinctual thing that brings many of us comfort. The past 18 weeks have felt far from nurturing in the feeding department. Supply orders and tube changes. Syringes and pump machines with IV poles. In the beginning I prayed it would be short-lived. 4 to 6 weeks, maybe 8. She’ll figure it out. It’ll be gone in no time. A tongue tie release. Weeks of speech and Stem therapy, a pediatric chiropractor and cranial sacral therapist. More appointments than I could count. But it has finally paid off.
Literally it was like she flipped a switch. And on a Wednesday morning at 5a, exactly 18 weeks to the day that we spent a night inpatient to get the tube, she took an entire bottle for her dad. This was something we had been working up to. She had been pretty consistent with taking 1/3 of her bottle or so for a couple weeks, but wasn’t super consistent. But after this... after this monumental feed. We haven’t looked back.
We are overjoyed to have these days behind us. The feeding tube will not be missed. And you better believe I’m kissing both cheeks every chance I get.
August is SMA Awareness month. The best gift our friends and family can continue to give us is prayer for Hayden's continued improvement and healing and to help us spread awareness and bring light to a devastating disease that so many (including us) hadn't even heard about before Hayden. If you're following her story on Instagram be sure to check out her stories through out the month of August. I'll be sharing facts and tid-bits each day on SMA as well as our personal journey to date.
Sending you all our love.
Love,
Hugh, Logan, Avery & Hayden
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