We met with my surgeon today, and he and Mommy decided to hold off on redoing the Nissen...for now. (That's the surgery when the doctor wraps a portion of the stomach around the esophagus to help with vomiting and reflux issues...common with CHARGE and being a preemie.) Whew, what a relief. (I had a very difficult recovery from this surgery last year!)
If it becomes enough of a problem (as it was a few weeks ago) that the vomiting is hindering our quality of life significantly OR if I stop growing OR if I begin to develop more respiratory problems (i.e. pneumonia), we will revisit this and probably move ahead with the surgery.
The second time around has a lot more potential complications, including cutting some very important nerves, rupturing the spleen, damaging the stomach, etc.
So obviously Mommy and I are doing to do EVERYTHING possible to avoid this "redo" surgery. Plus, they said if it failed the first time, it is likely to fail again the second time.
We will just continue our efforts with the various feeding regimens we do, and hopefully Mom doesn't get too frustrated and I stay healthy and growing. Let's hope for the best! :)
Tuesday, October 24, 2006
SLEEPLESS IN SEATTLE
I gave Mommy a pretty hard time in Seattle. Oops!
I kept her up pretty much all night...both nights. It was miserable. I was having difficulty breathing due to my heavy secretions and that would wake me up. But I think what kept me up was the different surroundings. I'm not used to being outside of my home for overnight stays. I have always been either at the hospital or my home.
Once Mom managed to get me back to sleep, she would try and put me back in the crib and I would cry immediately. This happened all night long. We tried to cuddle in her bed together, but she was worried she would fall asleep and that wouldn't be very safe. I tend to roll a lot in my sleep.
What made it worse was all my portable machines with short wires, tubes, etc. She was trying to calm me down by walking around but kept tripping over everything (small room) and then she'd be holding me and also trying to pick up the O2 tank, feeding pump, etc. We kiddos with extra "wiring" are definitely not easy to calm down when we are all hooked up!
Hopefully we are both able to catch up on our sleep tonight. We are home sweet home and we have a nurse coming tonight. Mommy is eagerly awaiting the nurse's arrival so she can catch some ZZZ's. :)
I kept her up pretty much all night...both nights. It was miserable. I was having difficulty breathing due to my heavy secretions and that would wake me up. But I think what kept me up was the different surroundings. I'm not used to being outside of my home for overnight stays. I have always been either at the hospital or my home.
Once Mom managed to get me back to sleep, she would try and put me back in the crib and I would cry immediately. This happened all night long. We tried to cuddle in her bed together, but she was worried she would fall asleep and that wouldn't be very safe. I tend to roll a lot in my sleep.
What made it worse was all my portable machines with short wires, tubes, etc. She was trying to calm me down by walking around but kept tripping over everything (small room) and then she'd be holding me and also trying to pick up the O2 tank, feeding pump, etc. We kiddos with extra "wiring" are definitely not easy to calm down when we are all hooked up!
Hopefully we are both able to catch up on our sleep tonight. We are home sweet home and we have a nurse coming tonight. Mommy is eagerly awaiting the nurse's arrival so she can catch some ZZZ's. :)
OUR HOSPITAL ADVENTURE
What a few days! WOW! I had a lot of appointments. We got some answers and also have some new issues to address. Mommy seemed a little concerned but for the most part, all is well.
We were excited to run into some of our favorite nurses and doctors from last year. I must be pretty popular because everyone seemed to know my name! That was fun! And everyone couldn't believe how great I am doing. Mommy was super proud to show me off!
Mommy was also very proud of my patience, because we had a lot of waiting, waiting, waiting. The hospital was extremely hectic and all the clinics were WAY behind in their schedules. Fortunately I am an amazing little kiddo (that's what Mommy and Grammy kept saying!) and I was tolerant. They are pretty good entertainers and snugglers!
And as always, the camera served as a good distraction...enjoy a few from our trip!
I was bored waiting for the doctor, so Mommy let me pull her hair. :)
Here's me and Grammy talking, "BA BA NA NA DA DA." We are working a lot these days on copying and conversation.
Enough talking for now, I need to catch some ZZZ's. No time for a real nap, so I just snuck in some shut eye in the waiting room.
And here I am snoozing again in the waiting room the next day. Thanks Grammy for the snuggle!
We brought along my favorite toy and Grammy played with me. I am completely addicted to this toy box! The only problem is that I love, love, love standing with it and often come tumbling down with the toy on top of me. Mom has to keep a close eye on me!
Check out my side sitting! This requires a lot of balance and strength!
We were excited to run into some of our favorite nurses and doctors from last year. I must be pretty popular because everyone seemed to know my name! That was fun! And everyone couldn't believe how great I am doing. Mommy was super proud to show me off!
Mommy was also very proud of my patience, because we had a lot of waiting, waiting, waiting. The hospital was extremely hectic and all the clinics were WAY behind in their schedules. Fortunately I am an amazing little kiddo (that's what Mommy and Grammy kept saying!) and I was tolerant. They are pretty good entertainers and snugglers!
And as always, the camera served as a good distraction...enjoy a few from our trip!
I was bored waiting for the doctor, so Mommy let me pull her hair. :)
Here's me and Grammy talking, "BA BA NA NA DA DA." We are working a lot these days on copying and conversation.
Enough talking for now, I need to catch some ZZZ's. No time for a real nap, so I just snuck in some shut eye in the waiting room.
And here I am snoozing again in the waiting room the next day. Thanks Grammy for the snuggle! 
We brought along my favorite toy and Grammy played with me. I am completely addicted to this toy box! The only problem is that I love, love, love standing with it and often come tumbling down with the toy on top of me. Mom has to keep a close eye on me! 
Check out my side sitting! This requires a lot of balance and strength!
Sunday, October 22, 2006
PLAYTIME IN THE PARK!
We had such a fun afternoon today...my first REAL playtime in a park!
This was also my first time really enjoying an outdoor swing. At first I was quite hesitant to touch the swing...that rubber is a weird texture. But Mommy kept trying and trying, and finally I got the hang of it and away we went!
I have practiced swinging with my OT and PT during our sessions, because it is helpful for my vestibular input and my core strength and balance. But this time was JUST for fun! (Ok Mom did make me do some PT moves...but she did it all while making silly faces so I still thought it was fun!)
Check this out, I'm touching the swing!
Yippee!!! Look at me!!!
That was fun Mom! Let's do it again!
Aunt Elizabeth and cousin Thomas were with us too...that was great! We are always amazed with Tom Tom...he is so big, strong and adventurous! What an inspiration for me!
Here we are chillin' in our swings.
Tom Tom was walking all around the park. He even walked up these very steep stairs to the slide...all by himself!
Look at me standing...this is my favorite thing to do.
Oh and how can I forget my first big slide? So cool! We were going so fast, Aunt Eliz barely got me in the photo!
With all of that excitement, I am wiped out! Time for a nappy nap!
This was also my first time really enjoying an outdoor swing. At first I was quite hesitant to touch the swing...that rubber is a weird texture. But Mommy kept trying and trying, and finally I got the hang of it and away we went!
I have practiced swinging with my OT and PT during our sessions, because it is helpful for my vestibular input and my core strength and balance. But this time was JUST for fun! (Ok Mom did make me do some PT moves...but she did it all while making silly faces so I still thought it was fun!)
Check this out, I'm touching the swing!
Yippee!!! Look at me!!!
That was fun Mom! Let's do it again!Aunt Elizabeth and cousin Thomas were with us too...that was great! We are always amazed with Tom Tom...he is so big, strong and adventurous! What an inspiration for me!
Here we are chillin' in our swings.
Tom Tom was walking all around the park. He even walked up these very steep stairs to the slide...all by himself!
Look at me standing...this is my favorite thing to do.
Oh and how can I forget my first big slide? So cool! We were going so fast, Aunt Eliz barely got me in the photo! 
And this was a perfect swing for me and Mommy. Good time to cuddle!
With all of that excitement, I am wiped out! Time for a nappy nap!ANOTHER OVERNIGHT ADVENTURE IN SEATTLE
Tonight we head to Seattle for a 2 1/2 day stint at Children's. We have lots and lots of clinic visits again. Some of the highlights include:
Craniofacial - Does he have a submucous cleft palate? Will this require surgery? Is his "soft spot" size acceptable - still not completely closed? What about his jaw? Max's lower jaw is recessed and during his hospital stay, there was talk that in the future he may require surgery if his gumlines don't match up.
Urology/Testicular Ultrasound - We will be doing the prep work for Max's surgery to bring down the testicles and making sure that he indeed needs this procedure. It will most likely happen very soon.
General Surgery - What should we do with Maxwell's Nissen??? There is great debate on this one.
Audiology - This will be Maxwell's second behavioral hearing study. The first he did "ok" but he wasn't really paying attention to instructions. But he has developed so much in the past few months that I am hoping this goes much better!
Hopefully these overnight stays will be easier than last time. Practice makes perfect, right? Plus Grammy is in town and is joining us on our adventure too. She can help watch Maxwell while I load his mini hospital into the room! That was very tricky last time.
Max has been very congested the past few days and has had difficulty sleeping through the night. He's requiring a lot of suctioning, nebulizers, and CPT (clapping of the chest and back to move the congestion in the lungs). So I am curious to see how much sleep I will actually manage. No sleep for two nights yet managing serious conversations with doctors all day...hmm, that reminds me of our 6 months in the hospital! :) However, as an outpatient you have to coordinate a lot of the studies, appointments, etc. yourself, so you have to really be on your toes. It will all work out...we'll just keep thinking of it as a fun lil' adventure! :)
Off to Seattle we go...
Craniofacial - Does he have a submucous cleft palate? Will this require surgery? Is his "soft spot" size acceptable - still not completely closed? What about his jaw? Max's lower jaw is recessed and during his hospital stay, there was talk that in the future he may require surgery if his gumlines don't match up.
Urology/Testicular Ultrasound - We will be doing the prep work for Max's surgery to bring down the testicles and making sure that he indeed needs this procedure. It will most likely happen very soon.
General Surgery - What should we do with Maxwell's Nissen??? There is great debate on this one.
Audiology - This will be Maxwell's second behavioral hearing study. The first he did "ok" but he wasn't really paying attention to instructions. But he has developed so much in the past few months that I am hoping this goes much better!
Hopefully these overnight stays will be easier than last time. Practice makes perfect, right? Plus Grammy is in town and is joining us on our adventure too. She can help watch Maxwell while I load his mini hospital into the room! That was very tricky last time.
Max has been very congested the past few days and has had difficulty sleeping through the night. He's requiring a lot of suctioning, nebulizers, and CPT (clapping of the chest and back to move the congestion in the lungs). So I am curious to see how much sleep I will actually manage. No sleep for two nights yet managing serious conversations with doctors all day...hmm, that reminds me of our 6 months in the hospital! :) However, as an outpatient you have to coordinate a lot of the studies, appointments, etc. yourself, so you have to really be on your toes. It will all work out...we'll just keep thinking of it as a fun lil' adventure! :)
Off to Seattle we go...
