Things have been so crazy that I haven't had any time to post the most recent doctor news... and at this rate, it seems to change so often that I better post soon! Go Samuel :)
Last week we had our usual pulmonology appointment (we go every three weeks) and we also met with the neurologist and talked about the results of the MRI. I started to write, "do you want the good news, or the okay news, first"... but I'm starting not to like those words very much. It's not that I don't believe in "okay news," I know it exists :) But I feel like that makes you saw "awww, poor kid" and Samuel is NOT that! He is absolutely amazing! I feel like this "okay news" is simply a symptom of the fact that lately all of the news has been good! This is hard to explain on a blog... on to the news...
Pulmonary was great! For the three weeks leading up to the appointment, we did two weeks of 2 nights off the vent and 1 night on... then after an email from our doctor that almost knocked me off my bench, a week of 3 nights off the vent and 1 night on. Samuel seems to be handling it well! His CO2 was actually down just a tad from the last appointment. The base excess was up a bit, but not serious enough that we can't keep an eye on it and keep forging ahead. SO, we are now on 3 nights off the vent and 1 night on for two weeks and then we will email with our doc to see if we should up that the week before our next appointment. I love it!
I also got a little reality check from our pulmonologist that wasn't fun to hear, but very necessary. Our biggest concern at this point is Samuel getting sick. The wrong bug, even if it isn't that bad for you or me, could put him back in ICU and/or back on the vent full time. Ugh. At the same time, it's funny (for lack of a better word) because if he can catch a cold and manage to not go back to ICU, it's a great thing - it means his body has a chance to build up it's immune system. Talk about walking a fine line. This was scary to hear, but like I said, also a good reminder when we start to feel like we can relax a little bit because he's doing so well.
Neurology was okay. Samuel's MRI was unchanged... not better, but not worse. He still has some hydrocephalus (swelling/excess fluid) in the main ventricles in his brain, but they are still okay and not severe enough to require shunting. Samuel also still has some excess fluid pockets in his sweet head. Not a huge deal unless he wants to play football :) But, when you account for the extra fluid, his head circumference is a bit small. It's not always the case, but smaller head circumferences can account for a lower IQ... but I know some pretty smart pea heads, so we are trying not to worry. Ha ha! There are also a few more things we want to watch that are way too medical for me to write about - if I haven't lost you yet, I would with that. Bottom line, things are okay.
Writing about this now, it feels kind of silly to say that I cried on and off for a good 24 hours after the appointment. I think that in the back of my mind I so badly wanted to hear "wow, it's incredible, everything on the MRI looks perfect!" Also kind of silly because it is perfect... it's my Samuel :) I am sure that whoever got to come up with the definition for perfect would agree.
A lot of great things came out of conversations with both doctors, but one got me moving in a new direction with Samuel. We have speech therapy, occupational therapy, and physical therapy, but one delay we haven't really addressed is his communication delay, which is entirely different than the ability to speak. In regards to some of these delays, the doctor recommended I look into some of the therapies they use for autistic children... no, Samuel is not autistic, but after doing a little bit of research, many of the programs used for children with autism are also used for other kids with communication delays, including kiddos with downs syndrome and preemies :) For example, because Samuel was in the hospital for so long, he never had a chance to learn all of the prelinguistic skills required for communicating... like he has never cried because he's hungry. I know it sounds kind of basic, but it has really helped me to be able to put this into words. All of a sudden I have new resources and new ways to help my baby learn to communicate. At the very least, I am thinking in a new direction and I know that will make a difference in how I work with Samuel. So much to say here, but this is a general intro.
Speaking of recap, some October photos I couldn't resist posting... after all, they were taken in one of my favorite places, the backyard :)
Last week we had our usual pulmonology appointment (we go every three weeks) and we also met with the neurologist and talked about the results of the MRI. I started to write, "do you want the good news, or the okay news, first"... but I'm starting not to like those words very much. It's not that I don't believe in "okay news," I know it exists :) But I feel like that makes you saw "awww, poor kid" and Samuel is NOT that! He is absolutely amazing! I feel like this "okay news" is simply a symptom of the fact that lately all of the news has been good! This is hard to explain on a blog... on to the news...
Pulmonary was great! For the three weeks leading up to the appointment, we did two weeks of 2 nights off the vent and 1 night on... then after an email from our doctor that almost knocked me off my bench, a week of 3 nights off the vent and 1 night on. Samuel seems to be handling it well! His CO2 was actually down just a tad from the last appointment. The base excess was up a bit, but not serious enough that we can't keep an eye on it and keep forging ahead. SO, we are now on 3 nights off the vent and 1 night on for two weeks and then we will email with our doc to see if we should up that the week before our next appointment. I love it!
I also got a little reality check from our pulmonologist that wasn't fun to hear, but very necessary. Our biggest concern at this point is Samuel getting sick. The wrong bug, even if it isn't that bad for you or me, could put him back in ICU and/or back on the vent full time. Ugh. At the same time, it's funny (for lack of a better word) because if he can catch a cold and manage to not go back to ICU, it's a great thing - it means his body has a chance to build up it's immune system. Talk about walking a fine line. This was scary to hear, but like I said, also a good reminder when we start to feel like we can relax a little bit because he's doing so well.
Neurology was okay. Samuel's MRI was unchanged... not better, but not worse. He still has some hydrocephalus (swelling/excess fluid) in the main ventricles in his brain, but they are still okay and not severe enough to require shunting. Samuel also still has some excess fluid pockets in his sweet head. Not a huge deal unless he wants to play football :) But, when you account for the extra fluid, his head circumference is a bit small. It's not always the case, but smaller head circumferences can account for a lower IQ... but I know some pretty smart pea heads, so we are trying not to worry. Ha ha! There are also a few more things we want to watch that are way too medical for me to write about - if I haven't lost you yet, I would with that. Bottom line, things are okay.
Writing about this now, it feels kind of silly to say that I cried on and off for a good 24 hours after the appointment. I think that in the back of my mind I so badly wanted to hear "wow, it's incredible, everything on the MRI looks perfect!" Also kind of silly because it is perfect... it's my Samuel :) I am sure that whoever got to come up with the definition for perfect would agree.
A lot of great things came out of conversations with both doctors, but one got me moving in a new direction with Samuel. We have speech therapy, occupational therapy, and physical therapy, but one delay we haven't really addressed is his communication delay, which is entirely different than the ability to speak. In regards to some of these delays, the doctor recommended I look into some of the therapies they use for autistic children... no, Samuel is not autistic, but after doing a little bit of research, many of the programs used for children with autism are also used for other kids with communication delays, including kiddos with downs syndrome and preemies :) For example, because Samuel was in the hospital for so long, he never had a chance to learn all of the prelinguistic skills required for communicating... like he has never cried because he's hungry. I know it sounds kind of basic, but it has really helped me to be able to put this into words. All of a sudden I have new resources and new ways to help my baby learn to communicate. At the very least, I am thinking in a new direction and I know that will make a difference in how I work with Samuel. So much to say here, but this is a general intro.
Speaking of recap, some October photos I couldn't resist posting... after all, they were taken in one of my favorite places, the backyard :)
Samuel and one of his BFF's, Stefanie :)
George and Olivia literally smell every flower they see... whether it is planted in a pot or printed on a shirt, they are smelling it!
Touching pine straw! This doesn't happen too often, but when it does, we cheer!You can also see Samuel's passy muir (speaking valve) attached to his trach... he has been doing more and more time on this. He loves it, but his body isn't quite ready to be on it all day. Let me tell you, he makes the most out of the time he does get, babbling up a storm!
George loves his pine straw :) I think he's organizing it, which must be why he moves it around so many times - it's impossible to organize pine straw!
Hiding! One of Olivia's favorite games... along with "Got You!" and "Boo!" All of which are followed by uncontrollable laughter and "again!) :)
Bow AND a hat - that's my girl!
