We were very blessed to have a great weekend with Ari. We got some good family time. We got to go to church and we went out to see the Travelers play on our annual church organized day at the ballpark. Wow, what a difference a few weeks makes. I had a lot of sweet moments this weekend. Not the least of which was snuggling Ari over, and over, and over...and over again. I really just couldn't get enough. But also, I got to watch my kids play together at home. I got to hear Ari applaud after Rowan finished the dinner prayer - he always gets so excited when he can finally eat. I got to sleep in the same bed with Sean...for an entire night, now several nights in a row! Man, these are the best moments in life.
But I got to experience something new. I got to piece back together the ribbons of a tragedy. Throughout this weekend I was struck by so many wonderful moments that just 4 weeks ago were unraveling before my eyes. It was almost as if I counted the moments I was afraid I would never have again - going to church as a family, hearing Ari applaud Rowan's performances, carrying Ari into the bathroom so he could smile at himself and laying down next to my husband with a peace, not just faith, but a real peace that everyone was ok. I am lucky and I counted every lucky moment I had this weekend in return for each and every scary moment that shook me 4 weeks ago. I am so blessed.
Today was Ari's post-hospital follow-up with Ari's pediatrician, Dr. Leah Youngblood. It was a great experience. I learned a lot, and got every question answered. She was fully engaged, and gave me as much time as I needed to talk through things. I'm a big fan of hers. Here's what I learned:
1. Ari is doing well. I reported that his eating and drinking was going well and getting better every day. Thanks to everyone who commented or sent me fb messages about smushy foods.
2. Developmentally I have to say I'm so proud of Ari. He learned a new sign (as in sign language) while in the hospital and polished up some he was just learning when all of this started. In his first trek back into physical therapy this morning, he had very little endurance but the skills were still there. It's gonna take time, but he'll get everything back. I see it.
3. Ari will take about 6 more months to recover from all that's happened to him and he needs a good year before he gets any more sedation if we can avoid it. His vascular, respiratory and immune systems are going to be on an uphill climb for awhile. Dr. Youngblood recommended limiting his exposure to other infected folks as much as possible because thanks to his immune system, he's high risk to catch whatever floats by, and if it's a respiratory bug, the lingering inflammation in his lungs is going to pose a challenge for getting rid of any infection very easily. Meanwhile, he's pretty mottled from the poor circulation, so we'll be keeping him toasty this summer.
4. Ari is having night terrors. He screams at night, a lot, sometimes just minutes apart, but he rarely wakes up. He has no apparent memory of the stress and fear when he wakes up in the mornings, which is good. Perhaps he is working through all the bravery and courage he had to muster up in the hospital. Sometimes the aftermath is worse than the storm I think. Whatever the reason, if there is any, this is something some kids get at his age. He will likely grow out of it. He will likely stop experiencing it every night once he can get more rest and get more strength. But for now, it is nightly, and these nights are tough on mom and dad. If we look like zombies even though he's no longer in the hospital, this is why. I reached out to friends today for anecdotal suggestions for dealing with night terrors and will try a detox bath and some essential oils along with a consistent and calm nighttime routine. I'm not good at routine, so I'll have to report back on how its working as well as my compliance.
5. Finally, with all of this, we are slowly easing Ari back into school. Today was saying hello to his teachers and classmates and then probably 20 minutes of physical therapy. That was about all he was good for, and so that was the end of his day. Tomorrow we'll try a little more. It was great seeing everyone at Easter Seals this morning. My x-man is loved by many there, and it was so good to be able to bring him back in.
And now, our weekend in pictures.
This is Ari, on the move at church after a reception.
And watching his sister dance.
At the ballpark.
Ari loved the playground.
Princess Rowan met another beauty queen at the ball park.
And got herself another tiara (from the beer girl, not the beauty queen). The girl is amazing at picking up free swag.
And here we are. As a family. :)
Love to all,
Dorothy
But I got to experience something new. I got to piece back together the ribbons of a tragedy. Throughout this weekend I was struck by so many wonderful moments that just 4 weeks ago were unraveling before my eyes. It was almost as if I counted the moments I was afraid I would never have again - going to church as a family, hearing Ari applaud Rowan's performances, carrying Ari into the bathroom so he could smile at himself and laying down next to my husband with a peace, not just faith, but a real peace that everyone was ok. I am lucky and I counted every lucky moment I had this weekend in return for each and every scary moment that shook me 4 weeks ago. I am so blessed.
Today was Ari's post-hospital follow-up with Ari's pediatrician, Dr. Leah Youngblood. It was a great experience. I learned a lot, and got every question answered. She was fully engaged, and gave me as much time as I needed to talk through things. I'm a big fan of hers. Here's what I learned:
1. Ari is doing well. I reported that his eating and drinking was going well and getting better every day. Thanks to everyone who commented or sent me fb messages about smushy foods.
2. Developmentally I have to say I'm so proud of Ari. He learned a new sign (as in sign language) while in the hospital and polished up some he was just learning when all of this started. In his first trek back into physical therapy this morning, he had very little endurance but the skills were still there. It's gonna take time, but he'll get everything back. I see it.
3. Ari will take about 6 more months to recover from all that's happened to him and he needs a good year before he gets any more sedation if we can avoid it. His vascular, respiratory and immune systems are going to be on an uphill climb for awhile. Dr. Youngblood recommended limiting his exposure to other infected folks as much as possible because thanks to his immune system, he's high risk to catch whatever floats by, and if it's a respiratory bug, the lingering inflammation in his lungs is going to pose a challenge for getting rid of any infection very easily. Meanwhile, he's pretty mottled from the poor circulation, so we'll be keeping him toasty this summer.
4. Ari is having night terrors. He screams at night, a lot, sometimes just minutes apart, but he rarely wakes up. He has no apparent memory of the stress and fear when he wakes up in the mornings, which is good. Perhaps he is working through all the bravery and courage he had to muster up in the hospital. Sometimes the aftermath is worse than the storm I think. Whatever the reason, if there is any, this is something some kids get at his age. He will likely grow out of it. He will likely stop experiencing it every night once he can get more rest and get more strength. But for now, it is nightly, and these nights are tough on mom and dad. If we look like zombies even though he's no longer in the hospital, this is why. I reached out to friends today for anecdotal suggestions for dealing with night terrors and will try a detox bath and some essential oils along with a consistent and calm nighttime routine. I'm not good at routine, so I'll have to report back on how its working as well as my compliance.
5. Finally, with all of this, we are slowly easing Ari back into school. Today was saying hello to his teachers and classmates and then probably 20 minutes of physical therapy. That was about all he was good for, and so that was the end of his day. Tomorrow we'll try a little more. It was great seeing everyone at Easter Seals this morning. My x-man is loved by many there, and it was so good to be able to bring him back in.
And now, our weekend in pictures.
This is Ari, on the move at church after a reception.
And watching his sister dance.
At the ballpark.
Ari loved the playground.
Princess Rowan met another beauty queen at the ball park.
And got herself another tiara (from the beer girl, not the beauty queen). The girl is amazing at picking up free swag.
And here we are. As a family. :)
Love to all,
Dorothy
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