The end of 2020 came to a close rather quickly it seemed. Even though there wasn't nearly the hustle and bustle there normally would have been, I still felt a little surprised to wake up in a new year. It's like I've been living on another planet for the past 11 months and now I must return to earth. If only that transition would come as quickly as the wreckage invaded. If only the healing were as quick as the hurt.
We impatiently await the vaccine. While it's not a cure to any of the brokenness we experienced in the last year, it is a step in the right direction. A step toward freedom. At least physical freedom. The mental and emotional freedom will come with time. The isolation has become our normal. Protecting her our number one priority. At all costs. At the expense of relationships and hurt feelings, the expense of the unpopular opinion, of our mental well-being. But we are so hopeful that the time has come for us to find our new beginning. A fresh start.
Since we last spoke we've celebrated months nine, ten and eleven with Hayden. Time that we don't take for granted and that we have enjoyed so much!
Hayden helped me train for a Thanksgiving day 5k. I hadn't ran over a mile in probably 5 years. She was quite the little drill sergeant. It was so special to get to train and run that with her. Not to mention a little extra challenging to push a jogging stroller with a 20+ lb baby in it!
As you can imagine I have an entirely new perspective and appreciatiation for what my body can do. Having a child that has to work incredibly hard to do things that most of us take for granted propels me to be the best version of my self, so I can take the best care of these little ones.
One of the most exciting things that happened over the past few months was that we ditched the helmet! 4 months was a long time. We are grateful to be done with it and grateful for a relatively round head.
We had more family pictures taken, because... why not! It's not like we had much else to do. Our photographer was/is a NICU nurse and has been incredibly accommodating with helping us document Hayden's first year of life while ensuring we feel completely safe. So thankful for people like her that understand and respect our situation.
I was concerned that our Christmas card was going to be nothing more than this family selfie in the car because we had a VERY uncooperative toddler. But we just went with it and embraced the crazy that is currently our life. Tis. The. Season.
These two are just smitten with each other and as much as I hate to report... she looks more and more like her daddy everyday.
Avery has capitalized on ALL of our time at home over the past year. He has his very own playset in the backyard now and we have all enjoyed another option for play.
Hayden continues to make really great strides physically, accomplishing several new feats over the past couple months.
She can complete a full barrel roll on the floor. Rolling from back to belling to back in one continuous direction.
She is getting stronger at doing tummy time on the floor/flat surface, although we have a hard time keeping her in this position because she just wants to roll over. The flat surface is more challenging than when she's propped on the Boppy pillow or wedge, but just harder to contain her. Our biggest PT goal right now is strengthening all the right muscles so she can extend her arms while in tummy time.
By all medical definitions she is independently sitting. Which is something we were unsure would ever happen. She is a living, breathing, miracle. We still don't walk away from her while she's sitting because her overall endurance and stamina are still short-lived. There's always pillows strategically placed for the inevitable topple. But she's getting stronger and with that hopefully will come longer stints of independent sitting.
All of these accomplishments are incredible. And we celebrate them daily. We continue to have dreams and aspirations of adding to this list. "Simple" things like:
Tummy time in extended arms
Transitioning from laying down to sitting independently and vice versa
Actively playing while sitting without losing balance or tiring quickly
Crawling (this may never happen because the level of coordination is incredibly difficult, but we will keep it on the list!)
Standing, bearing weight through her legs, taking steps
Bath time is still a favorite around here! And goodness, there's just nothing much cuter than a little babe in the tub!
We are well into exploring solid foods and Hayden just wants to know where all this good stuff has been all her life. Girlfriend LOVES to eat. After 18 weeks with a feeding tube, this too continues to just blow us away. One of her favorite things right now is a big girl peanut butter sandwich, no crust. If you've every wondered if you can gum a PB sandwich, the answer is YES! And thankfully, not long after we discovered this, right before she turned 11 months old we FINALLY broke the gums on a little bottom toofer... with it's neighbor soon to follow. We were starting to worry!
We continue to work hard in speech therapy. Our goal right now is independently taking fluids from a cup or straw. We have definitely made improvements, but aren't quite there yet. She much prefers an open cup, with assistance.
Don't let the picture fool you, she actually is growing to like broccoli quite well!
We made Christmas cookies with Gee and it was just as messy as it looks.
Avery taste tested a LOT of cookies. In-house quality control. Check!
And then he helped deliver to our next door neighbors and enjoyed all the different Christmas decorations!
So many cute outfits and absolutely nowhere to go. So Hayden's doctor's and therapists have benefited the most from all of her cuteness. We had clinic just a few days before Christmas. This large set of appointments happens every 3-4 months. It lasts around 3 hours and is completely exhausting.
Everyone was incredibly impressed by Hayden, how far she's come and everything that she's doing. We continue to manage her diagnosis the best we can with the information we have. Hayden was baby #7 in the state of Indiana to receive Zolgensma on the open market and baby number 200-ish in the entire country. These babies are *thankfully* responding so well to treatment, but the long term data just isn't there yet.
For example, she's sitting - what a miracle. Something that an SMA type 1 should never do. But now we're much more aware of her scoliosis, which to some degree is inevitable, and working to slow the progression as much as possible. Frequent xrays are parts of that along with specific PT exercises. Making sure that we are always positioning her or supporting her in a straight and aligned posture. And pray that her muscles and overall strength continue to catch up with her development. To add some perspective, in most severe cases, back surgery is inevitable where rods are placed to correct the scoliosis - something we are so hopeful we can avoid.
We have been fortunate that Hayden's respiratory health has remained incredibly strong. Maybe it's because she's been in a bubble her first year of life, or maybe we've just been lucky. Below is our pulmonologist during our recent clinic visit. Hayden didn't enjoy having her co2 levels checked, but this is super important. We need to ensure that her lungs are strong enough to expel the co2 properly.
She's also not a big fan of getting X-rays. But it's something that we need to closely monitor.
We're still in the rhino cruiser during nap time. It's helping hold her hips in their sockets. Since she has low tone this is an ongoing "treatment", again just trying to prevent bigger or worsening problems. While some people stand/walk with dislocated hip(s)... we assume that's not very comfortable and we'd like to manage hers best we can.
And yes, she's trying to put two pacifiers in her mouth at once here...
Avery and Hayden have made a very special little friend. He and his mama came into our lives during a very difficult time and have been a light in the darkness. We are so grateful for them and Avery and Hayden enjoy having a friend so very much! I sure hope Avery is taking notes because Wyatt is the sweetest little friend to Hayden... something we're still working on with her big bro.
Despite Avery being more interested in his latest toy that moves (cars, trucks, tractors are life for this boy) I have been able to snag a few pictures of the two of them.
These may be blurry... but if they don't capture the essence of these two I don't know what does!
We were able to sneak away to the lights in Charlestown with just Avery since he was absolutely ecstatic about Christmas lights this year. It was rainy but we had a great time.
One more picture of Avery eating his way through December... one cookie at a time. And his first time truly playing in the snow!
An exciting new development that came from our recent clinic appointment is that we received an order for a stander. Hayden was fitted for one late December and we hope to have ours within a few months. The stander is important for a variety of reseasons. Since she is bearing very little weight through her legs on her own (really for just brief moments, a few seconds at a time) we need to work on supported strengthening. Her bones are in danger for fragility fractures if we don't find ways to help her strengthen them. And of course the muscles and ligaments all need this work too. Once we have it we'll develop the protocol for use alongside our PT. But we're guessing she'll be in it for a few minutes a day, slowly building up to 1-2hr+ depending on how well she tolerates it. With our hope of someday standing and maybe even taking steps you can imagine the important roll this stander will play.
We had a very quiet Christmas. But we enjoyed it nonetheless. Hugh and I celebrated our 10th Christmas together and we attempted to get a family picture in front of the tree, but you can see how that went. "Okay, no one look at the camera. Perfect!"
One of my favorite pictures of Avery is sitting in front of the Christmas tree on his first Christmas. I was so hopeful Hayden would be able to do the same, and sure enough, we barely made it, but she did it, and it was the best Christmas gift I could have asked for.
Matching Christmas jammies on Christmas Eve. And because some pictures are more forgiving than others, I'm really noticing it here! ... Avery has survived this past year on home-hair-cuts alone, and it shows. He's not the most cooperative little customer so I've been very lax lately. I'm ready to strap him into a barber chair VERY soon.
Hayden's first Christmas was filled with ALL the Christmas jammies, and I wouldn't have had it any other way.
If you're still reading... thanks for hanging in there! This was a long one, but hopefully the pictures were worth it. As we approach Hayden's first birthday (2/7) and her Diagnosis Day (2/13) we are filled with a lot of emotions. We're so grateful to have her here. So thankful to have the opportunity to celebrate her first year of life. Something we were told probably wouldn't happen the day we received her diagnosis.
Her Diagnosis Day will forever be a marked moment in our lives. There are now the people that we were before, how we thought our future might look and the things we thought we knew... and now the after... who we are now, and working to become as we continue to work through the past year. There is still grief. There is still pain, hurt and questioning. But thankfully joy and grief can co-exist.
If you've ever experienced trauma of any sort, this may feel familiar. But there is a specific darkness associated with the rest of the world moving on, living, while you try to put pieces of your life back together, try to maintain relationships even though you're no longer the same person that most expect you to be. It's hard. It's really hard.
We're grateful for you, each of you reading this. Following along. Cheering us on from a distance, or up close (but socially distanced of course). Praying for us. We specifically appreciate prayers for the peace and understanding that only God can provide. Prayers for acceptance as Hayden's story and future unfolds. Guidance on parenting and raising a child with a disability, helping to educate others and most importantly for her ongoing health.
Cheers to 2021! May it be brighter, indeed!
Love,
Hugh, Logan, Avery, & Hayden
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