Happy Birthday to you! Happy Birthday to you! Happy Birthday, dear Everett! Happy Birthday to you!
It's been quite a year, and I wouldn't trade it for anything in the world!
xoxo
Margot
Friday, August 29, 2008
Friday, August 8, 2008
The beginning of the end
WE'RE IN TROUBLE NOW!
KP took his first tentative unassisted steps
on August 6
And two days later he's on the move
KP took his first tentative unassisted steps
on August 6
And two days later he's on the move
Monday, August 4, 2008
Wow, what a month!
Well, this has officially been the longest we have gone without a post...not a single one for the month of July. Wow! That means I have A LOT of updating to do. Bear with me here.
Okay, first off, no pictures for this update. That is what has slowed down having an update at all. It just takes so much to get the pictures organized and then up to the blog, and after I update you, I think you'll understand why this is sometimes a very daunting task. :)
When we last left you, KP had just had his colostomy reversed. Everything seems to be going great on that front. We have gained another doctor, a GI doctor. To tell you the truth, I'm not sure why we haven't had one before this. Since most of KPs problems deal with his GI tract, you would think that we would have collected a GI doctor earlier in the game, but who knows? (Funny thought, what if you actually had a game made out of KPs life? Like Monopoly, but you would go around the board collecting and losing doctors and body parts...but I digress)
Anyhow, our attention to KPs diet has become even more important now that he has had the reversal done. We are keeping him to a High Residue diet, and he has added Reglan and Miralax to his arsenal. This is a constant struggle with minor adjustments here and there because constipation is his worst enemy, and if it happens to him it could mean big trouble. So, Italy really does have a whole new language...well, our section does anyway. :)
So, here's the breakdown of how we've been doing since we last caught up with you:
Jun 21 - We got to go to Granbury to see Jamil and Josiah who just happened to be in town for the weekend. We had a fun time, and KP and Josiah got to play a little bit, which was fun for them. Josiah took a liking to KPs walker, which was cute because he got in it and started walking around in it (and he was WAY too big for it), but also because the walker was Jamil's at one point in time. :) It was really nice being able to spend some time with them before they left. They are now in Japan for the next three years.
July 4- Back to Granbury again for the weekend. :) Granbury puts on a specatacular fireworks show every July 4 right on the lake. So, we got to go out on the boat with the whole family and watch the show. KP got a little fussy waiting, but once the fireworks started, he was extremely interested! He thought they were great. :)
July 9 - We went to the hospital bright and early in the morning to meet our pulmonologist and GI doctor. See, KP has tracheomalacia and laryngomalacia, this is why he sounds like a barking seal most of the time. But, lately his coughing has become more severe and more frequent. Well, his GI doctor suggested his pulmonologist, and his pulmonologist suggested his GI doctor...see where this is headed? So, we all decided to get them both together in a room and let them have at it. :) KP had a bronchoscopy and endoscopy done to decide which system was at fault. We also thought we may have to dilate his esophagus that day as well.
Well, it appears that he does have some reddening in his esophagus, which we expected with his GERD. Additionally, there is a stricture present, as we expected, but there was good news as well. His GI was going to dilate him to 10mm, but his esophagus was already at 9.5mm, so he decided not to. We go back and do this again in November, and if things still look good, then we may not have to dilate him. :) YAY!
As for his trachea, well that is an entirely different story. KPs trachea very much resembles a pancake. I will try to scan the pictures that we got. His trachea should look like a C. Instead it looks like an I. There is also a narrowing in his right lung. A sleep study was recommended.
July 11 - We had our 6 month follow-up cardiologist appointment and...we no longer have a cardiologist. :) Yay! We are 100% free and clear. We don't have to go back for checkups or anything! Woo hoo!
July 14 - KP started swim class! Oh, he had so much fun! We now have swimming every Monday at 10:30. On the 14th, we started off with just water acclimation, but we have steadily been increasing our underwater breath time as well. As of 8/4 we are up to 2 seconds underwater! :) When Dylan came to observe the first class that we went underwater for 1 second, he almost flew off the observation deck (good thing the glass was there). He said it was the longest second of his life...then I told him that the other kids in the class are up to 4 and 6 seconds. :)
July 17 - We met our new sleep doctor. She told us about some options available once we complete the sleep study. If they find that KP has obstructive sleep apnea, then he will be put on a CPAP machine at night to help keep his trachea open. We are pretty sure that he has sleep apnea, so we are really looking forward to him getting a good night's rest if possible!
July 27 - We had our sleep study. Dylan and KP went up to the Sleep Institute around 6pm to spend the night in the clinic. Dylan said it was awful, but KP seemed to have weathered it okay. He STILL has glue in his hair from some of the leads. They put about 15 leads just on his head, and a bunch of others all over the rest of him. I have no idea how he got to sleep. :)
July 28 - We had another follow up with our general surgeon. So far we are progressing nicely. So much so that we have now upgraded to the dreaded 13. :) Not really dreaded, we should have been here before surgery, but we are here now, and that is all that matters.
July 31 - We had an appointment with Texas Scottish Rite. Let me tell you, these people are AWESOME! TSRHC is a Masonic charity, so they have never charged a patient for services. So, that is an immediate plus! But, their hospital was amazing! And there are so many volunteers. It's the little things you notice. For example, I had to change KPs diaper, so I asked the lady at the desk where I could go. She walked me over to where I needed to go right down the hall. What it must be like to be staffed so fully! :)
Anyhow, it looks like we are going to miss our 1 year mark. KP will be having surgery on his hands next year because they want to wait until his hands are bigger and they have a little more to work with. But, the good news is that he will be able to keep his thumb.
He has Thumb Hypoplasia. On the Blauth Classification, his right thumb is a 3A, and his left thumb is a 2. They are also concerned about the length of his radius and some possible missing cartilage under his thumb area.
He has also been diagnosed with scoliosis. So, we now have a hand doctor, and a referral to an orthopedic specialist at TSRHC.
Some other noteworthy occurrences this month:
I don't know if you've been keeping track here, but I have. So, we lost one doctor and gained 3 this month. If this is how it's going to go, I would rather keep the doctors we have. :)
Dylan's car finally bit the dust, so we bought a new car...a minivan. :) Dylan said that his manhood did not shrivel up and die as soon as he got in the drivers seat, so we'll take that as a good sign. I love the car. And, we bought it from CarMax, and I've got to say, that had to have been the easiest car buying experience that I have ever had. I would recommend them to anyone!
So, coming up soon:
This Wednesday, we have high hopes that KP will get to take his helmet off forever!! Keep your fingers crossed!
Next Monday, KP goes in for surgery again. This time with his urologist. We are finally repairing his chordee and hypospadias which means that I have to start rethinking my diaper changing techniques. At least I get to work into all of this gradually, instead of all at once like other parents have to. :)
Well, thanks for bearing with me through so much verbage. I promise to have pictures next time. A full picture post with minimal verbage. :)
xoxo
Margot
Okay, first off, no pictures for this update. That is what has slowed down having an update at all. It just takes so much to get the pictures organized and then up to the blog, and after I update you, I think you'll understand why this is sometimes a very daunting task. :)
When we last left you, KP had just had his colostomy reversed. Everything seems to be going great on that front. We have gained another doctor, a GI doctor. To tell you the truth, I'm not sure why we haven't had one before this. Since most of KPs problems deal with his GI tract, you would think that we would have collected a GI doctor earlier in the game, but who knows? (Funny thought, what if you actually had a game made out of KPs life? Like Monopoly, but you would go around the board collecting and losing doctors and body parts...but I digress)
Anyhow, our attention to KPs diet has become even more important now that he has had the reversal done. We are keeping him to a High Residue diet, and he has added Reglan and Miralax to his arsenal. This is a constant struggle with minor adjustments here and there because constipation is his worst enemy, and if it happens to him it could mean big trouble. So, Italy really does have a whole new language...well, our section does anyway. :)
So, here's the breakdown of how we've been doing since we last caught up with you:
Jun 21 - We got to go to Granbury to see Jamil and Josiah who just happened to be in town for the weekend. We had a fun time, and KP and Josiah got to play a little bit, which was fun for them. Josiah took a liking to KPs walker, which was cute because he got in it and started walking around in it (and he was WAY too big for it), but also because the walker was Jamil's at one point in time. :) It was really nice being able to spend some time with them before they left. They are now in Japan for the next three years.
July 4- Back to Granbury again for the weekend. :) Granbury puts on a specatacular fireworks show every July 4 right on the lake. So, we got to go out on the boat with the whole family and watch the show. KP got a little fussy waiting, but once the fireworks started, he was extremely interested! He thought they were great. :)
July 9 - We went to the hospital bright and early in the morning to meet our pulmonologist and GI doctor. See, KP has tracheomalacia and laryngomalacia, this is why he sounds like a barking seal most of the time. But, lately his coughing has become more severe and more frequent. Well, his GI doctor suggested his pulmonologist, and his pulmonologist suggested his GI doctor...see where this is headed? So, we all decided to get them both together in a room and let them have at it. :) KP had a bronchoscopy and endoscopy done to decide which system was at fault. We also thought we may have to dilate his esophagus that day as well.
Well, it appears that he does have some reddening in his esophagus, which we expected with his GERD. Additionally, there is a stricture present, as we expected, but there was good news as well. His GI was going to dilate him to 10mm, but his esophagus was already at 9.5mm, so he decided not to. We go back and do this again in November, and if things still look good, then we may not have to dilate him. :) YAY!
As for his trachea, well that is an entirely different story. KPs trachea very much resembles a pancake. I will try to scan the pictures that we got. His trachea should look like a C. Instead it looks like an I. There is also a narrowing in his right lung. A sleep study was recommended.
July 11 - We had our 6 month follow-up cardiologist appointment and...we no longer have a cardiologist. :) Yay! We are 100% free and clear. We don't have to go back for checkups or anything! Woo hoo!
July 14 - KP started swim class! Oh, he had so much fun! We now have swimming every Monday at 10:30. On the 14th, we started off with just water acclimation, but we have steadily been increasing our underwater breath time as well. As of 8/4 we are up to 2 seconds underwater! :) When Dylan came to observe the first class that we went underwater for 1 second, he almost flew off the observation deck (good thing the glass was there). He said it was the longest second of his life...then I told him that the other kids in the class are up to 4 and 6 seconds. :)
July 17 - We met our new sleep doctor. She told us about some options available once we complete the sleep study. If they find that KP has obstructive sleep apnea, then he will be put on a CPAP machine at night to help keep his trachea open. We are pretty sure that he has sleep apnea, so we are really looking forward to him getting a good night's rest if possible!
July 27 - We had our sleep study. Dylan and KP went up to the Sleep Institute around 6pm to spend the night in the clinic. Dylan said it was awful, but KP seemed to have weathered it okay. He STILL has glue in his hair from some of the leads. They put about 15 leads just on his head, and a bunch of others all over the rest of him. I have no idea how he got to sleep. :)
July 28 - We had another follow up with our general surgeon. So far we are progressing nicely. So much so that we have now upgraded to the dreaded 13. :) Not really dreaded, we should have been here before surgery, but we are here now, and that is all that matters.
July 31 - We had an appointment with Texas Scottish Rite. Let me tell you, these people are AWESOME! TSRHC is a Masonic charity, so they have never charged a patient for services. So, that is an immediate plus! But, their hospital was amazing! And there are so many volunteers. It's the little things you notice. For example, I had to change KPs diaper, so I asked the lady at the desk where I could go. She walked me over to where I needed to go right down the hall. What it must be like to be staffed so fully! :)
Anyhow, it looks like we are going to miss our 1 year mark. KP will be having surgery on his hands next year because they want to wait until his hands are bigger and they have a little more to work with. But, the good news is that he will be able to keep his thumb.
He has Thumb Hypoplasia. On the Blauth Classification, his right thumb is a 3A, and his left thumb is a 2. They are also concerned about the length of his radius and some possible missing cartilage under his thumb area.
He has also been diagnosed with scoliosis. So, we now have a hand doctor, and a referral to an orthopedic specialist at TSRHC.
Some other noteworthy occurrences this month:
I don't know if you've been keeping track here, but I have. So, we lost one doctor and gained 3 this month. If this is how it's going to go, I would rather keep the doctors we have. :)
Dylan's car finally bit the dust, so we bought a new car...a minivan. :) Dylan said that his manhood did not shrivel up and die as soon as he got in the drivers seat, so we'll take that as a good sign. I love the car. And, we bought it from CarMax, and I've got to say, that had to have been the easiest car buying experience that I have ever had. I would recommend them to anyone!
So, coming up soon:
This Wednesday, we have high hopes that KP will get to take his helmet off forever!! Keep your fingers crossed!
Next Monday, KP goes in for surgery again. This time with his urologist. We are finally repairing his chordee and hypospadias which means that I have to start rethinking my diaper changing techniques. At least I get to work into all of this gradually, instead of all at once like other parents have to. :)
Well, thanks for bearing with me through so much verbage. I promise to have pictures next time. A full picture post with minimal verbage. :)
xoxo
Margot
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