Celebrating our X-Man with a way, way, way overdue blog post:)
First thing, today is World Down Syndrome Day. It's celebrated by wearing blue and yellow or crazy socks. The date is significant - 3rd month, 21st day = 3 copies of the 21st chromosome = Down syndrome. For those of you in central Arkansas there will be a balloon release on Cook's Landing (North Little Rock side of the Arkansas River 430 Bridge) and the Two Rivers Park and Big Dam Bridge bridges will be lit up blue and yellow tonight to celebrate the day, so look up and across the horizon!
DS awareness is great and essential. The Italians do an amazing campaign every year for WDSD, and if you haven't seen this year's PSA on my Facebook page, here's the video along with some background info.
But now, let's do some catching up.
Last summer, Ari started getting sick in late June. He was pretty much sick every 10 days to 2 weeks all the way through mid January. Sick, as in, your typical kid diseases, but he couldn't avoid them - pink eye, strep throat, stomach virus, cold, ear infection, and this is probably why I was so remiss in blogging. I had lots of drafts but they started to sound the same, as in, Ari is sick again, but he'll be better...so I just never published any of them...I know, I know, I can do better than that...
We did get our first family vacation since Ari was born last July. It was wonderful, even though Ari got sick and required regular breathing treatments throughout. On the last 2 days he got to the beach, and boy does he love the water!
It was on this beach trip that we started Ari on a gluten-free and casein-free diet. Mostly starting with the gluten-free part, we noticed a big difference in his level of engagement pretty quickly. I would cheat a little bit on the no dairy rule, but then this November, I learned he has both binding and blocking antibodies to getting folate into the nervous system, so that was the end of dairy for him. It's definitely challenging to do a special diet, but it's worth it.
In October, Ari got a 4th set of ear tubes. This time they were the T-tubes that don't usually fall out on their own, but of course one of his was trying to fall out just a few weeks after surgery. But, he's only had one ear infection since getting the tubes in October, so I'll still call it a win.
Lately...as in since the end of January, Ari is soaring. It's probably a combination of a lot of things, but he has never been better, I do believe. It's been 6-8 weeks since he's been sick and even longer since he's had antibiotics. That's huge after being sick consistently for 7 months. His thyroid and mitochondrial meds have been increased recently, we've started some home laser treatments on him and just 2 weeks ago he started a new school, Pediatrics Plus...so lots of new things for him, but they are all adding up to a very happy and healthy boy (hoping I'm not jinxing us!). If you saw him today, you wouldn't recognize him from the boy he was just a few weeks ago. It's pretty incredible.
So in celebration of WDSD, here is Ari, doing great, and some other happy family photos. May will be our 2 year anniversary since the illness that started this blog. He will turn 4 on May 18. We are so grateful!
Coming off the big slide at the neighborhood park.
And my sweet cuddly boy.
We took Rowan to the Women's March here in Little Rock.
Where she met Wonder Woman who taught her "With great power comes great responsibility."
And we learned this year that Rowan is a big fan of St. Patrick's day. Who knew? She has plenty of Irish blood in her so she comes by it honestly.
Sean circled the sun once more and we had a nice family celebration.
And Sean, Rowan and Ari had the wonderful opportunity to help raise money for Easter Seals in their annual fashion event. I'm a terrible photographer so the best I got was of Sean posing and Rowan walking the runway. The event ended up a little too loud and late for Ari, so I didn't get good photos of him.
And here he is from just 2 weeks ago in his first few days at the new school. Watch out world! He is tearing it up as a stinker, terrible toddler, into everything, hard to keep up with, and we couldn't be more thrilled!
Happy World Down Syndrome Day!
Love to all!
Dorothy
First thing, today is World Down Syndrome Day. It's celebrated by wearing blue and yellow or crazy socks. The date is significant - 3rd month, 21st day = 3 copies of the 21st chromosome = Down syndrome. For those of you in central Arkansas there will be a balloon release on Cook's Landing (North Little Rock side of the Arkansas River 430 Bridge) and the Two Rivers Park and Big Dam Bridge bridges will be lit up blue and yellow tonight to celebrate the day, so look up and across the horizon!
DS awareness is great and essential. The Italians do an amazing campaign every year for WDSD, and if you haven't seen this year's PSA on my Facebook page, here's the video along with some background info.
But now, let's do some catching up.
Last summer, Ari started getting sick in late June. He was pretty much sick every 10 days to 2 weeks all the way through mid January. Sick, as in, your typical kid diseases, but he couldn't avoid them - pink eye, strep throat, stomach virus, cold, ear infection, and this is probably why I was so remiss in blogging. I had lots of drafts but they started to sound the same, as in, Ari is sick again, but he'll be better...so I just never published any of them...I know, I know, I can do better than that...
We did get our first family vacation since Ari was born last July. It was wonderful, even though Ari got sick and required regular breathing treatments throughout. On the last 2 days he got to the beach, and boy does he love the water!
It was on this beach trip that we started Ari on a gluten-free and casein-free diet. Mostly starting with the gluten-free part, we noticed a big difference in his level of engagement pretty quickly. I would cheat a little bit on the no dairy rule, but then this November, I learned he has both binding and blocking antibodies to getting folate into the nervous system, so that was the end of dairy for him. It's definitely challenging to do a special diet, but it's worth it.
In October, Ari got a 4th set of ear tubes. This time they were the T-tubes that don't usually fall out on their own, but of course one of his was trying to fall out just a few weeks after surgery. But, he's only had one ear infection since getting the tubes in October, so I'll still call it a win.
Lately...as in since the end of January, Ari is soaring. It's probably a combination of a lot of things, but he has never been better, I do believe. It's been 6-8 weeks since he's been sick and even longer since he's had antibiotics. That's huge after being sick consistently for 7 months. His thyroid and mitochondrial meds have been increased recently, we've started some home laser treatments on him and just 2 weeks ago he started a new school, Pediatrics Plus...so lots of new things for him, but they are all adding up to a very happy and healthy boy (hoping I'm not jinxing us!). If you saw him today, you wouldn't recognize him from the boy he was just a few weeks ago. It's pretty incredible.
So in celebration of WDSD, here is Ari, doing great, and some other happy family photos. May will be our 2 year anniversary since the illness that started this blog. He will turn 4 on May 18. We are so grateful!
Coming off the big slide at the neighborhood park.
And my sweet cuddly boy.
We took Rowan to the Women's March here in Little Rock.
Where she met Wonder Woman who taught her "With great power comes great responsibility."
And we learned this year that Rowan is a big fan of St. Patrick's day. Who knew? She has plenty of Irish blood in her so she comes by it honestly.
Sean circled the sun once more and we had a nice family celebration.
And Sean, Rowan and Ari had the wonderful opportunity to help raise money for Easter Seals in their annual fashion event. I'm a terrible photographer so the best I got was of Sean posing and Rowan walking the runway. The event ended up a little too loud and late for Ari, so I didn't get good photos of him.
And here he is from just 2 weeks ago in his first few days at the new school. Watch out world! He is tearing it up as a stinker, terrible toddler, into everything, hard to keep up with, and we couldn't be more thrilled!
Happy World Down Syndrome Day!
Love to all!
Dorothy
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