We took Jonathan and Ethan to Bellevue Square Mall for trick or treating today. We went to the mall not only because it's a safe environment (can't really be too careful these days) but also because our neighborhood is pretty dead.
This was the first time they had been trick or treating. Well, Ethan was in costume and he did get candy - but since he was asleep for just about all of it (we put him in the stroller), I guess while technically it was his first time, it doesn't really count.
Jonathan was Thomas The Tank Engine and Ethan was a baby kangaroo.
While Jonathan got a fairly good haul of candy (he loved going through his stash at home afterward and seeing what he got) and had a good time, the highlight of the evening for him was going into one of the toy stores in the mall to look at toys and play on the train table.
The mall was packed. The event started at 4PM and was to last until 7PM but we were advised by some people we knew to show up early or run the risk of running out of candy. Traffic getting to the mall was as bad as I have ever seen it. We arrived at 4:45 and found that while only 45 minutes into it - some stores had already run out of candy! Way to plan that out guys. However, being only 45 minutes into the event, that was the exception and not the norm and we trick or treated for the better part of an hour before Jonathan said he was done (and wanted to go to the toy store).
One of the photography studios in the mall was giving away free Halloween portraits of kids so Dina lined up for that (with a still sleeping Ethan) while I took Jonathan to the toy store. Pick up date for the photos is in a few days so we'll have to wait and see how they turn out.
- bob
Sunday, October 31, 2010
Monday, October 25, 2010
96 Hours Later
Ethan's G-Tube hole seems to be coming along very nicely. When we changed the dressing last night, there was barely any leakage at all.
We were told that sometimes these holes heal from the inside out. On the outside, you can still see a small hole (which appears to be somewhat scabbed over) but since there is very little to no leakage, we assume this is what is happening.
On the other hand, Ethan came down with a cold and the cough turned pretty bad sounding as of yesterday so Dina took him to the doctor. The poor little guy now has an ear infection and possibly the beginnings of a sinus infection. Hopefully his antibiotics won't taste too bad...
- bob
We were told that sometimes these holes heal from the inside out. On the outside, you can still see a small hole (which appears to be somewhat scabbed over) but since there is very little to no leakage, we assume this is what is happening.
On the other hand, Ethan came down with a cold and the cough turned pretty bad sounding as of yesterday so Dina took him to the doctor. The poor little guy now has an ear infection and possibly the beginnings of a sinus infection. Hopefully his antibiotics won't taste too bad...
- bob
Saturday, October 23, 2010
Volunteering at Evergreen
I officially became a volunteer at Evergreen Hospital today. I have joined the Parent Advisory Board for the NICU. I've already been to 2 meetings and have had fun sharing our story with Ethan, talking about our experiences, and sharing ideas on a variety of subjects.
In order to become a volunteer at Evergreen, you have to meet and interview with someone in the department you are interested in, do a 3-5 hour training, have 2 TB tests done, prove your other vaccines are up to date, and get a badge. The process is very thorough, but you do get some perks for volunteering and I have already enjoyed my experiences as part of this advisory board. The other members are so nice and the staff members are awesome!
-Dina
In order to become a volunteer at Evergreen, you have to meet and interview with someone in the department you are interested in, do a 3-5 hour training, have 2 TB tests done, prove your other vaccines are up to date, and get a badge. The process is very thorough, but you do get some perks for volunteering and I have already enjoyed my experiences as part of this advisory board. The other members are so nice and the staff members are awesome!
-Dina
Thursday, October 21, 2010
Jonathan's First Field Trip
Today was a pretty big day. In addition to Ethan getting his G-Tube removed (see post below), Jonathan had his first field trip at school today to a pumpkin farm.
The trip included a hay-bale maze, a petting zoo, a tractor ride, and picking out a pumpkin from the pumpkin patch. Jonathan, however, was interested in only getting a pumpkin from the patch and had no real interest in any of the other activities. In the end, he did say he did have fun (probably because he got his pumpkin!).
The trip included a hay-bale maze, a petting zoo, a tractor ride, and picking out a pumpkin from the pumpkin patch. Jonathan, however, was interested in only getting a pumpkin from the patch and had no real interest in any of the other activities. In the end, he did say he did have fun (probably because he got his pumpkin!).
Searching for the best pumpkin....
I found my pumpkin!
Mommy wants a picture.
Ethan took a nap after all the excitement of the animals and a hay ride.
We got a treat at the farm...my first creamsicle!- Bob/Dina
No More G-Tube!
Ethan got his G-Tube removed today! He had a scheduled appointment to see the general surgeon that inserted it for evaluation for removal. After a very quick discussion, the decision was basically: 1) remove it now, 2) remove it next week in general surgery. Option one had the benefit of getting it out now and not subjecting Ethan to anesthesia/intubation but the drawback was that the hole would be left to close up on it's own. This happens at differing rates for different people - some close that night, some close within 24 hours, some don't close and require surgery. The second option had the benefit of having the hole closed surgically but the drawback was going through anesthesia/intubation. Normally, this is considered an outpatient procedure but because Ethan has so many issues with anesthesia/intubation, the doctor thought it best to remove it now and try to avoid anesthesia. If it turns out surgery is ultimately required to close the hole we can at least say we tried our best to avoid surgery. Closing the hole is a simple procedure and can be done quickly (20 minute procedure) - but it will most likely mean another overnight stay for Ethan.
Removal was quick - but painful. As the doctor put it: the only risk of doing it now was that he would be very unhappy for a few minutes. They essentially just pulled it right out. He held his belly down with one hand, and yanked it out with the other. There was quick audible 'pop' followed by lots of crying. Ethan cried a lot - but was less hysterical than I expected. I expected the 'silent/I can't even catch my breath/followed by intense screaming' but that didn't happen - he just cried. After about 5-10 minutes, he had calmed down and by the time we got home, he was totally fine.
The hole should close within 24-48 hours. In the mean time, it will leak and we've been given gauze to cover it up in the mean time. The doctor did mention that if the hole doesn't completely close up on it's own after 48 hours, but the leakage appears to be getting to be less and less every day, then we should simply give it more time.
During the next 48 hours Ethan can eat/drink as he normally does. The only restriction is to not submerge the area (so no baths - but sponge bathing is OK).
This also means that barring a surgery to close the hole, Ethan is now done with all his procedures and surgeries for several years!
We have appointments in the first week of November to follow up with Ophthalmology (post-op visit) and to go over the sleep study results. After that, barring any unforeseen events, the next big thing in Ethan's life will be the start of eyeglasses and eye patching. This may not begin for a year or two still (we'll know more after our post-op appointment with Ophthalmology). Moreover, after these appointments, Ethan probably won't have any more Children's appointments until his next regular Cranialfacial followup which won't be until summer of 2011.
Another pleasant consequence is that we no longer need to rent the feeding pump (we've already called to make arrangements to have it picked up), nor do we need to have a regular supply of Elecare (the special (expensive) prescription formula that Ethan has been on) which means, ultimately, less future dealings with the mob, er, I mean the insurance company*.
- bob
*As a post script: we're still working on whittling down the amounts under contention with the crooks, oops - the insurance company. While the amount under contention is still about $1200, it's a far cry from the (7+)K it was a few months ago. Progress is slow but steady...
Removal was quick - but painful. As the doctor put it: the only risk of doing it now was that he would be very unhappy for a few minutes. They essentially just pulled it right out. He held his belly down with one hand, and yanked it out with the other. There was quick audible 'pop' followed by lots of crying. Ethan cried a lot - but was less hysterical than I expected. I expected the 'silent/I can't even catch my breath/followed by intense screaming' but that didn't happen - he just cried. After about 5-10 minutes, he had calmed down and by the time we got home, he was totally fine.
The hole should close within 24-48 hours. In the mean time, it will leak and we've been given gauze to cover it up in the mean time. The doctor did mention that if the hole doesn't completely close up on it's own after 48 hours, but the leakage appears to be getting to be less and less every day, then we should simply give it more time.
During the next 48 hours Ethan can eat/drink as he normally does. The only restriction is to not submerge the area (so no baths - but sponge bathing is OK).
This also means that barring a surgery to close the hole, Ethan is now done with all his procedures and surgeries for several years!
We have appointments in the first week of November to follow up with Ophthalmology (post-op visit) and to go over the sleep study results. After that, barring any unforeseen events, the next big thing in Ethan's life will be the start of eyeglasses and eye patching. This may not begin for a year or two still (we'll know more after our post-op appointment with Ophthalmology). Moreover, after these appointments, Ethan probably won't have any more Children's appointments until his next regular Cranialfacial followup which won't be until summer of 2011.
Another pleasant consequence is that we no longer need to rent the feeding pump (we've already called to make arrangements to have it picked up), nor do we need to have a regular supply of Elecare (the special (expensive) prescription formula that Ethan has been on) which means, ultimately, less future dealings with the mob, er, I mean the insurance company*.
- bob
*As a post script: we're still working on whittling down the amounts under contention with the crooks, oops - the insurance company. While the amount under contention is still about $1200, it's a far cry from the (7+)K it was a few months ago. Progress is slow but steady...
Tuesday, October 19, 2010
Things Looking Good For G-Tube Removal
Ethan had a regular followup with Nutrition at Children's as well as a second swallow study.
Nutrition really liked his weight gain (over 18 pounds now) and so this bodes very well for getting the G-Tube removed. We meet with the general surgeon (who inserted it) later this week and he will give his evaluation.
The swallow study was to rule out any physiological issues regarding Ethan's reluctance to eat solid/chunky/real food. The swallow study came through with no issues so the thought now is simply it's a texture issue - Ethan just doesn't like that stuff. So the plan is to slowly introduce the stuff into his diet. He will start with things that can be mashed (like yams, etc) and to gradually make them more chunky/solid over time so that eventually he just gets used to more solid stuff.
I know we have been remiss in pictures of the little guy since his eye surgery. Pictures should be forthcoming. At present, the redness around the sclera has diminished substantially but there still is a little bit. Pictures, once uploaded, will probably show more redness than there currently is (since they will probably be 1-2 weeks old).
- b
Nutrition really liked his weight gain (over 18 pounds now) and so this bodes very well for getting the G-Tube removed. We meet with the general surgeon (who inserted it) later this week and he will give his evaluation.
The swallow study was to rule out any physiological issues regarding Ethan's reluctance to eat solid/chunky/real food. The swallow study came through with no issues so the thought now is simply it's a texture issue - Ethan just doesn't like that stuff. So the plan is to slowly introduce the stuff into his diet. He will start with things that can be mashed (like yams, etc) and to gradually make them more chunky/solid over time so that eventually he just gets used to more solid stuff.
I know we have been remiss in pictures of the little guy since his eye surgery. Pictures should be forthcoming. At present, the redness around the sclera has diminished substantially but there still is a little bit. Pictures, once uploaded, will probably show more redness than there currently is (since they will probably be 1-2 weeks old).
- b
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