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| Posing at the Old Mill this Summer |
In September, we were able to celebrate a HUGE milestone with him. For the first time ever, Aloshua went an entire YEAR without being hospitalized. We had a few close calls, but he fought through his illnesses like a champion and was able to remain at home. We cannot even begin to tell you how amazing it was to celebrate this milestone with him. It was a very long time in coming... seven years, as a matter of fact. Our family is still celebrating, and probably will be for a very long time to come. :)
Because of his progress, Aloshua's doctors decided it was time to see how he would do without the ventilator. After checking everything out, they decided he needed one more surgery before we got to that point. So in October, Aloshua underwent his 22nd surgery. He had his adnoids removed, tubes placed in his ears, and part of his airway fixed. He came through with flying colors and was able to return home the same day.
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| Aloshua and Mommy before surgery |
His recovery was probably one of the easiest he's ever had. He was up playing later that afternoon. But there were a few setbacks. Post-surgery, Aloshua began to aspirate liquids at an alarming rate. Every drink he took seemed to cause him some problems. He had a swallow study early this week, and is now on very thick liquids. If he continues to aspirate (liquid goes down the airway into the lungs instead of down the esophagus into the stomach), his doctors will halt all liquids by mouth until spring. The last thing anyone wants is for him to get aspiration pneumonia this winter and undo all of the progress he's made this year.
But don't fret because we have more BIG news!
Aloshua has now been off of the ventilator for the last FIVE WEEKS and is doing great! For the first time in his life, he's gained weight while off of the vent. He's been incredibly active and is doing such an amazing job handling breathing on his own, being a little boy, and gaining weight. This is such a huge milestone for him, and it's one we've all been so thrilled to celebrate with him. If he continues to do well, his doctors will assess whether he's ready for life without the trach in the spring. We're cautiously optimistic, and we've got our fingers crossed that he breezes through this winter with no complications.
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| Goodbye Ventilator! |
Otherwise, Aloshua has had a great year. He's spent a lot of time out and about with his family, and has kept up really well. We're able to take him out without his face mask more often, and he just loves it. He's talking constantly now, and he's a rather bossy little thing! He loves telling his sister what to do. "No" has become a favorite word. And, sadly, he's learned the not so nice "Hut up" phrase (his way of saying shut up_ for all those times when he's annoyed at someone. We're trying to break him of that one, but he's reluctant to let it go. He eats two bowls of oatmeal for breakfast each morning, and keeps eating all day long.
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| Halloween Fun with his siblings |
He's learning new things every day. This is as nerve-wracking as it is inspiring. He's required to wear braces on his legs at night, but much to his therapist and mom's ire, he insists on taking them off in the middle of the night every night. For a little guy, he is as stubborn as they come. :)
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| Hanging with his own kind: Superheroes! |
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| Reading Aunt Ayden's new book, FADE. |
A few weeks ago, he snuck out of bed early, got all of his supplies for the morning together, got his mom a Pop-tart, and laid it all out on the couch before he woke her up. It was truly the sweetest thing, and just reminded all of us of how incredibly special Aloshua is. His heart is as big as his spirit, and he continues to teach us lessons each and every day about life, living, and the empowering spirit of generosity.
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| Posing for his traditional sleep study picture |
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| Walking at therapy |
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| The Great Pumpkin |
Watching his progress this year has been such an amazing thing for his family, his friends, and everyone rooting for him. We cannot begin to thank all of you enough for your support, your prayers, and your commitment to our little superhero. We would not be here without all of you. So thank you for everything you do for him and for the thousands of special children just like him.
We're still fighting for our little superhero, and for children just like him. After a year of roadblocks, his insurance provider FINALLY agreed to begin covering the high-calorie nutrition supplements he needs to keep him growing. They still refuse to cover many of the items he needs, but with the help of his amazing medical team, we've been able to find viable alternatives as often as possible.
His mom has continued advocating for him and for children like him, and has spent much of the year working as a volunteer for the Arkansas Center for Respiratory Technology Dependent Children, attending conferences, networking with other parents, and helping parents new to life with a trach kid get settled into the rollercoaster they will experience.
This summer, Aloshua was able to attend his first conference for ACRTDC, and was in awe of all the children there who were just like him. His mom is looking forward to attending with him again next year. In the meantime, alongside his siblings, Aloshua continues to support the Arkansas Chapter of the March of Dimes as a Mission Kid, helping to raise awareness of the high costs of pre-term birth.
The March of Dimes has done amazing things for children like Aloshua. Because of their commitment to preemies and those with birth defects, Aloshua is alive today. This is a blessing our family will never be able to repay, but we work alongside Aloshua each day to say thanks the best way we know how: by helping others beginning the journey Aloshua has been on for the last seven and a half years. And we hope you will continue to join us as we fight for Aloshua, and for the millions of preemies like him.
We won't give up.
All the best,
The Schulist Family
