My goodness, it has been way too long since we've shared an update! Life has taken off and we're enjoying the mundane business of living life with two very little ones. But we absolutely must take a moment to share our fundraising results from our 2nd Annual Here for Hayden Walk from last month. But first, a little update on all things Hayden.
In February we celebrated Hayden's FIRST birthday. It was a very low-key first birthday to todays standards but considering how momentous the milestone and with all we had survived over her first year, we probably celebrated all the more.
Hayden enjoyed her birthday cake to the fullest and definitely put on a show for us during her One Year shoot.
While these gorgeous images may be slightly enhanced, this little doll baby truly has the bluest eyes. Sometimes I can't believe they're real. We have her daddy to thank for those!
We survived the emotions of her Diagnosis Day anniversary and quickly moved on to celebrate all things LOVE with Valentine's Day, some cute outfits, big bows and a little sibling affection, that Avery preferred socially distanced.
Hayden has continued to work really hard at perfecting her independent eating and drinking skills. As you may remember she had a feeding tube for 18 weeks that we realized she needed right around a month old. We truly had no idea if she'd ever eat and drink on her own. To this day Hugh and I both catch ourselves mesmerized by the super simple things like her eating yogurt from a pouch on her own, or guzzling some water from a sippie cup.
Hayden's skills improved to the point that we graduated from feeding therapy in March of this year, after almost of year of visits. In the beginning we were going 2x per week, then weekly, and towards the end a couple of monthly visits. Regaining her swallow and desire to eat independently is something we are most grateful for.
Hayden continues to work incredibly hard in therapy multiples times a week. In OT she is mastering things like putting objects in a container and taking them out. She loves to point, clap her hands, wave and recently blow kisses. All fine motor skills and movements that are amazingly impressive.
We are continuing to encourage independent mobility. Hayden rolls to wherever she wants to go. While it may seem odd at her age to allow her to spend this much time on the floor, we have seen a continual progression of skill, strength, stamina and endurance through lots of floor time and activities. Honestly we've yet to experience a plateau in her gains. While we are very much on her time, and following her lead, we remain steadfast in our hope for all that she will achieve.
Hayden spends an hour a day in her stander. This piece of equipment is critical.
- It helps improve and maintain range of motion
- It decreases joint and muscle contractures
- Helps improve strength in her trunk and lower extremities
- Promotes proper muscle and skeletal development
- Helps manage her scoliosis
- Improves and maintains bone integrity
- Improves bowl function (and it works! Hello, gravity!)
- Improves circulation
And many many other things. We are so grateful for this piece of equiptment!
We have to stay pretty creative on ways to keep Hayden entertained and interested in therapy. We do our best to incorporate exercises into our everyday activities so she doesn't even realize she's being worked.
Hayden was fitted for SMO braces that she wears inside her shoes, particularly when she's in her stander or when we're practicing weight bearing exercises. They offer her much needed support and give her a little more confidence. She is not standing independently yet, but we can't help but think it's only a matter of time.
As the seasons change and weather does what it does here in the Midwest we have noticed occasional changes in Hayden's respiratory response. Nothing major. But enough to prompt us to ramp up our in-home preventive care.
We celebrated Avery's 3rd birthday in May. Our first true gathering (albeit small) since Hayden was born. The cake did not disappoint and Avery was pleased with the monster truck theme!
This years 2nd Annual Here for Hayden Walk absolutely exceeded any expectations I had. It was the best day filled with so much joy.
We had the most beautiful weather. It was absolutely perfect. And if you know much about weather this time of year in Indiana, it's very unpredictable. It may rain, snow, or set you on fire.
She stole the show and we were so thankful to finally have the opportunity to introduce her in person to so many loved ones.
We had friends travel several hours by car AND plane to come see us and help celebrate!
Beyond family and friends I had the most amazing group of co-workers show up to support us, and honestly there just aren't words to describe how much that meant.
I am beyond excited to share that through the generosity of so many, through raffles, $5 Friday's, H4H Swag, donations, and more we donated $12,045.00 to CureSMA.
We raise money and awareness for those who come after us. There were so many who paved the way for us. Who made this life for Hayden possible. These dollars that we're donating may be the very dollars going towards the research that will someday find a CURE. Without the love and support of friends and family like you, sweet babies like Hayden will continue to be born with this devastating diagnosis. But she is proof that there is life beyond this disease. It is no longer a death sentence. The very least we can do is continue to fight until no family has to endure what we have, and what those before us have, which sadly is so much more than many of us could fathom.
Thank you. Thank you for your kindness, generosity, and love for our family. The support of this walk and our fundraising efforts was truly overwhelming.
We are kicking off this summer is style, doing very normal, everyday actives as a family of 4 and loving every minute of it.
Morning snuggles and pool days.
T-ball practice and date nights.
Weeknight rides on the by-side (as Avery calls it) chasing the sun until bedtime with these sweet little babes that make us oh so tired (and sometimes a little crazy) but are truly the greatest gift we have ever received.
Wishing you all the best Summer, and I promise it won't be another 6 months before we update again.
Love,
the Nantzes
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