ALREADY???
Otis has had a busy past few weeks!
Unfortunately, there was no change on his October 10 EEG, so his neurologist decided it was time to begin tapering him off of the ACTH while starting him on a new antiepileptic drug that is mainly used to treat infantile spasms. Luckily for us, this new drug is given orally, meaning no more shots! We will give Otis his very last ACTH injecton on October 30.
While the ACTH didn't make the spasms go away, Otis's disposition has improved so much while on it. He is making eye contact now, tracking faces and objects much more, and doesn't stare off to the left nearly as much as he used to do. He is also responding to our voices now--usually his eyes get really wide when he hears us talk to him. He still has his grouchy times (baby 'roid rage), but we are still also seeing a few smiles here and there, and he has become VERY chatty. Still, we will be glad to say goodbye to the side effects of the steroid, and to the twice weekly pediatrician visits for vitals checks (blood pressure, blood glucose, and weight). He started the new drug on Thursday, and we are hopeful and prayerful that this will be the one to work for him. We will continue to call the neurologist with weekly progress reports, and plan to take Otis to see him again in early-to-mid-December.
We have also begun to work with a great program called the Tiny-K Foundation, which provides services to infants and toddlers with special needs. Once a week, an occupational therapist/early inerventionalist comes to our home to teach us things we can do to help Otis with his development. Last week we learned about things we can to to get him to start rolling from side to side like he'd begun to do before the spasms came on, holding his head up and lifting it forward when we pick him up, and encouraging him to push up with his arms and upper body during tummy time. We love our Tiny-K "coach", and are so excited to be proactive in helping Otis to learn and grow.
Speaking of growing...at Otis's last checkup, he weighed in at a whopping 18 pounds 13 ounces and measured 26 inches long. We expected the ACTH to turn him temporarily into a little sumo baby, but aside from his chunky chunky cheeks (some call it "moon face", but to us, they're just the same sweet chunky Otis cheeks he's always had) he's actually at a very normal, healthy weight for his length (height?). He is still very ravenous, wanting a bottle every 2-3 hours, but that should also start to dwindle back down to normal as he tapers off of the ACTH.
In addition to the constant medical madness, we have had many bright spots over the past few weeks, including visits from Grandma and Grandpa DuBois and from our very good friends Brett and Rosie Prochaska (even before that September 26 post...wow, we're behind!). We unfortunately didn't get any pictures while the Prochaskas were here, but we all had such a good time seeing and catching up with them. Otis even flashed a few of his biggest smiles in a very long time while Brett was holding him!
Unfortunately, there was no change on his October 10 EEG, so his neurologist decided it was time to begin tapering him off of the ACTH while starting him on a new antiepileptic drug that is mainly used to treat infantile spasms. Luckily for us, this new drug is given orally, meaning no more shots! We will give Otis his very last ACTH injecton on October 30.
While the ACTH didn't make the spasms go away, Otis's disposition has improved so much while on it. He is making eye contact now, tracking faces and objects much more, and doesn't stare off to the left nearly as much as he used to do. He is also responding to our voices now--usually his eyes get really wide when he hears us talk to him. He still has his grouchy times (baby 'roid rage), but we are still also seeing a few smiles here and there, and he has become VERY chatty. Still, we will be glad to say goodbye to the side effects of the steroid, and to the twice weekly pediatrician visits for vitals checks (blood pressure, blood glucose, and weight). He started the new drug on Thursday, and we are hopeful and prayerful that this will be the one to work for him. We will continue to call the neurologist with weekly progress reports, and plan to take Otis to see him again in early-to-mid-December.
We have also begun to work with a great program called the Tiny-K Foundation, which provides services to infants and toddlers with special needs. Once a week, an occupational therapist/early inerventionalist comes to our home to teach us things we can do to help Otis with his development. Last week we learned about things we can to to get him to start rolling from side to side like he'd begun to do before the spasms came on, holding his head up and lifting it forward when we pick him up, and encouraging him to push up with his arms and upper body during tummy time. We love our Tiny-K "coach", and are so excited to be proactive in helping Otis to learn and grow.
Speaking of growing...at Otis's last checkup, he weighed in at a whopping 18 pounds 13 ounces and measured 26 inches long. We expected the ACTH to turn him temporarily into a little sumo baby, but aside from his chunky chunky cheeks (some call it "moon face", but to us, they're just the same sweet chunky Otis cheeks he's always had) he's actually at a very normal, healthy weight for his length (height?). He is still very ravenous, wanting a bottle every 2-3 hours, but that should also start to dwindle back down to normal as he tapers off of the ACTH.
In addition to the constant medical madness, we have had many bright spots over the past few weeks, including visits from Grandma and Grandpa DuBois and from our very good friends Brett and Rosie Prochaska (even before that September 26 post...wow, we're behind!). We unfortunately didn't get any pictures while the Prochaskas were here, but we all had such a good time seeing and catching up with them. Otis even flashed a few of his biggest smiles in a very long time while Brett was holding him!
Otis enjoyed hanging out with his pals Rylan and Pickle at his very first Maple Leaf festival in Baldwin City on Saturday. And by "hanging out", I mean "sleeping through the entire thing"! We've finally found an infant carrier--this one front-facing--that Otis actually enjoys being in. Last Saturday he spent nearly an hour in it at the Lawrence farmer's market just hanging out all wide-eyed, taking in all of the fun sights and sounds. And Mommy and Daddy each got both of their arms back for a little while!
Oh, I almost forgot...Friday night as we were giving Otis his bath and doing a gum-sweep with the wash cloth, we discovered that that sneaky little guy had cut two bottom teeth! That would explain all of the excessive drooling lately, but aside from that, we hadn't really seen it coming. After all that he's been through in his short life, I guess teething is just no big thing for him--such a tough little guy!
He goes in for his 4-month checkup with his pediatrician tomorrow, but will have to hold off on his 4-month immunizations until he's been off of the ACTH for about a month. The neurologist wants to leave plenty of time for his immune system to build back up. So he'll get his 4-month shots at 6 months, and his 6-month shots a little later on. (Ugh, more needles!) The pediatrician is also going to talk to us about getting Otis started on rice cereal, which we're all ready to do. That formula just does not stay with him long enough to keep him satisfied for long, and Mommy and Daddy are looking forward to the return of 5+ consecutive hours of sleep at night, which is also something Otis had just begun to do just before the onset of the spasms.
I know there are a million other little things that I'm leaving out, but I'll have to jot them down as I think of them and save them for another post.
In the meantime, a little cuteness to tide you over....
In the meantime, a little cuteness to tide you over....
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| Ready for a walk downtown |
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| Stealthy sleepytime smiles |
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| CHEEEEKS! |
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| Lazy Saturday |
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| Snoozing through Maple Leaf |
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| Contemplating all of those crazy baby gym toys |
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| Just so sweet |
Thanks again so much to all of you for all of your love and your continued prayers, thoughts, and well-wishes. These past couple of months have been pretty rough on the three of us, and we have been so incredibly blessed to have each of you in our lives, helping us make our way.
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