Thursday, November 23, 2006
Griffith and Allan - Thanksgiving 2006
The boys in their Baby's First Thanksgiving bibs in Ashland park.
Thanksgiving 2006 (II)
Griffith pulling on Allan by his bib -- you would think their parents would do something about that, wouldn't you?
Thanksgiving 2006
Allan looking not at all grateful. For anything. Fair resemblance to his father, however.
Wednesday, November 22, 2006
Good night.
Our little family is settled in on the eve of Thanksgiving. We can't really say that it is our first Thanksgiving together as it was the Tuesday before last year when we found out that we were expecting twins. We can honestly say that none of us knew what we were in for. That's probably a good thing.
We are really excited at the prospect of our first holiday on our own. With Jay's family across the pond and mine ruled out for reasons of distance and quarantine (no large crowds, no sick people, no kids under 15), we are soloing. Allan and I are already ensconced in the master suite. He is sleeping, peaceful as a little lamb. Jay and Griffith are downstairs roasting a turkey breast and making some sort of British "side dish" that seems to be link sausages wrapped in bacon and cooked in the oven. I think he called it some sort of Napoleon something or other and I can only assume that it is meant to be derogatory to the French. Still, I am somewhat baffled by the thought of this as a side dish. Generally speaking side dishes here consist of vegetables or starchs of some sort. Don't get me wrong -- as a Southerner and a country girl, I have a great appreciation for the wonder of pork, but this is taking it to a whole other level. The yeast dough is made for the rolls and I will be mashing potatoes and fixing green beans tomorrow. I think we will be all right. Allan's sweetheart, Jennifer, dropped off a chocolate pie tonight so I may postpone making that pumpkin roll for another day.
The weather held for another day so the boys and I went off on another long walk this afternoon (Flora still disapproving, but resigned). Markus accompanied us for part of the way. We walked for well over an hour and there wasn't a peep from either boy. They both dozed for part of the trip, but spent the majority of the time taking it all in very peacefully.
Allan went to the ophthamologist this morning and she is pleased with how his eye looks. He still isn't tracking well with it, but things are probably still pretty hazy to him out of that eye. We go next week to have him fitted for a contact. He has become an expert at slamming his eye shut and wriggling away when you try to put drops in so I can only imagine that wrestling him to put a teeny, tiny contact in will be at least a two person operation.
Allan's opthalmologist had her five month old daughter at the office and we think she was trying to set the two of them up. Little hussy.
They took the stitches out today and his belly looks good. He still owns the World's Most Perfect Belly Button. The peg doesn't seem to be bothering him at all and it is fairly easy to use (it is kind of like the stopper that goes in one of those plastic beach balls). He seems much happier without the NG tube in his nose and throat. His saturation levels have been excellent since we got home and he has not been retching or spitting up. So far the peg seems like a good idea.
Griffith is just a ball of fun all the time. He cracks himself up. Flora swears that he said "hi" today and I may take that as his first word. Unless he says Mama. We just can't have Dada be the first word. I just won't be able to stand that.
Time for lights out up here. Here's hoping that we have a nice, peaceful start to the long holiday weekend.
We are really excited at the prospect of our first holiday on our own. With Jay's family across the pond and mine ruled out for reasons of distance and quarantine (no large crowds, no sick people, no kids under 15), we are soloing. Allan and I are already ensconced in the master suite. He is sleeping, peaceful as a little lamb. Jay and Griffith are downstairs roasting a turkey breast and making some sort of British "side dish" that seems to be link sausages wrapped in bacon and cooked in the oven. I think he called it some sort of Napoleon something or other and I can only assume that it is meant to be derogatory to the French. Still, I am somewhat baffled by the thought of this as a side dish. Generally speaking side dishes here consist of vegetables or starchs of some sort. Don't get me wrong -- as a Southerner and a country girl, I have a great appreciation for the wonder of pork, but this is taking it to a whole other level. The yeast dough is made for the rolls and I will be mashing potatoes and fixing green beans tomorrow. I think we will be all right. Allan's sweetheart, Jennifer, dropped off a chocolate pie tonight so I may postpone making that pumpkin roll for another day.
The weather held for another day so the boys and I went off on another long walk this afternoon (Flora still disapproving, but resigned). Markus accompanied us for part of the way. We walked for well over an hour and there wasn't a peep from either boy. They both dozed for part of the trip, but spent the majority of the time taking it all in very peacefully.
Allan went to the ophthamologist this morning and she is pleased with how his eye looks. He still isn't tracking well with it, but things are probably still pretty hazy to him out of that eye. We go next week to have him fitted for a contact. He has become an expert at slamming his eye shut and wriggling away when you try to put drops in so I can only imagine that wrestling him to put a teeny, tiny contact in will be at least a two person operation.
Allan's opthalmologist had her five month old daughter at the office and we think she was trying to set the two of them up. Little hussy.
They took the stitches out today and his belly looks good. He still owns the World's Most Perfect Belly Button. The peg doesn't seem to be bothering him at all and it is fairly easy to use (it is kind of like the stopper that goes in one of those plastic beach balls). He seems much happier without the NG tube in his nose and throat. His saturation levels have been excellent since we got home and he has not been retching or spitting up. So far the peg seems like a good idea.
Griffith is just a ball of fun all the time. He cracks himself up. Flora swears that he said "hi" today and I may take that as his first word. Unless he says Mama. We just can't have Dada be the first word. I just won't be able to stand that.
Time for lights out up here. Here's hoping that we have a nice, peaceful start to the long holiday weekend.
Tuesday, November 21, 2006
As you can see from the pictures posted last night, the boys are doing well and getting along most of the time.
Despite Flora's disapproval, we all took a big walk yesterday afternoon (she thought it was too cold) since it was bright and sunny. You would have thought we were going on an Artic expedition with all the fleece, hats, and blankets. Still, they both seemed to enjoy the great outdoors. Or what they could see of it through the small slit that Flora allowed for their eyes. It is another pretty day so we will probably take another stroll this afternoon if Flora hasn't let the air out of the stroller tires. If she had her way, we would all be indoors from now until May.
Despite Flora's disapproval, we all took a big walk yesterday afternoon (she thought it was too cold) since it was bright and sunny. You would have thought we were going on an Artic expedition with all the fleece, hats, and blankets. Still, they both seemed to enjoy the great outdoors. Or what they could see of it through the small slit that Flora allowed for their eyes. It is another pretty day so we will probably take another stroll this afternoon if Flora hasn't let the air out of the stroller tires. If she had her way, we would all be indoors from now until May.
Sunday, November 19, 2006
Home again, home again -- part 3
We have had a very busy weekend. Allan made it home (again) Saturday morning and he has done very well. He hasn't really tried to mess with his eye too much at all. The lids are a little red and a little swollen, but not anything too bad. (Easy for me to say -- it isn't my eye.) The eye drops we are putting in are pretty much the same as before. The only difference is that we put a patch over his eye when we put him to bed at night. His belly is a little tender but Tylenol seems to help that and we hope that clears up soon. He's actually been a little fussy which is a real change of pace for him. His lungs must be much improved because he can really get some decent volume when crossed. He's getting to be pretty demanding, too. A lot like his brother Griffith. In fact, they seem to have developed the uncanny ability to sense when the other is getting ready to have a meltdown which enables them to get tuned up simultaneously. (It sounds a lot cuter than it is.)
The apple juice never did work for Griffith. On Saturday afternoon, I made good my threat to use a glycerin suppository. I dosed him up and headed out to do some shopping and, about 45 minutes later, got a call from Dad letting me know "it worked. Well." Who knew that the response would be so prompt?
The apple juice never did work for Griffith. On Saturday afternoon, I made good my threat to use a glycerin suppository. I dosed him up and headed out to do some shopping and, about 45 minutes later, got a call from Dad letting me know "it worked. Well." Who knew that the response would be so prompt?
Friday, November 17, 2006
So far, so good....
Allan had a good day today. He got to have pedialyte this afternoon and tonight they have started him back on formula. If he tolerates that well, then we hope to get him home tomorrow. He was a little fussy this afternoon, but, all things considered, he really hasn't complained much. The patch came off this afternoon and his eye looks great -- it is a little bloodshot, but no worse than you might have after a long Saturday night out. And it looks so much better without that darned white cataract in the pupil. The lump seems to be much less, too. We have to keep putting drops in it around the clock and, for the next week, unless we are right on top of him, he has to have a guard on it to make sure that he doesn't whack it. The ophthamologist was pleased that he had a good 'red reflex' (the flash back you get when you take a picture) which means that his retina is good and getting light to it. He may have lost some vision in that eye because the cataract cut the light off for a while, but we are pretty sure he has some in it at least because he has gotten really good at blinking at the precise moment when you are trying to put the drops in.
So, while Dad and Allan hang out at the hospital, Griffith and I are hanging out watching Rachel Ray. It looks to me like she is frying stale bread in olive oil. Not really sure why. Maybe Grif has been paying better attention. Flora's attempt to encourage a movement has been for naught so it may be another long night over here.
So, while Dad and Allan hang out at the hospital, Griffith and I are hanging out watching Rachel Ray. It looks to me like she is frying stale bread in olive oil. Not really sure why. Maybe Grif has been paying better attention. Flora's attempt to encourage a movement has been for naught so it may be another long night over here.
Thursday, November 16, 2006
Allan was extubated this afternoon and has done very well. He looks good and is all wiggly and sassy. I spent the afternoon and Dad is spending the night with him. No word on when he can come home, but he has to be NPO (without food) until tomorrow to give his gut a chance to recover. We imagine that he'll have to stay for a day or so until every one is satisfied that the peg is in place and that he is going to be able to feed. When last I talked to Jay he was watching The History Channel and holding Allan because every time he put Allan down there was a meltdown. It seems to be going around amongst the Richardson boys. I've had a similar night with Ol Griff. We are now working on Hour 18 since I got up. All I wanted was for Griff to take a little nap, let me have a bath and a little dinner and then we would all go to bed. No such luck.
Flora played a nasty trick on me. She is dedicated to regular bowel movements for the boys and decided that Griff had not pooped recently enough. So she tanked him up on apple juice while we were at the hospital today. Then, once I got home, she hit the road. He hasn't had a movement yet, but the poor little guy has worked on it all night long --- wriggling and crying. Every time I put him down, he shouts down the walls. I figure we are due for some epic event some time about 2 a.m. Would one more day have been terrible?
Flora played a nasty trick on me. She is dedicated to regular bowel movements for the boys and decided that Griff had not pooped recently enough. So she tanked him up on apple juice while we were at the hospital today. Then, once I got home, she hit the road. He hasn't had a movement yet, but the poor little guy has worked on it all night long --- wriggling and crying. Every time I put him down, he shouts down the walls. I figure we are due for some epic event some time about 2 a.m. Would one more day have been terrible?
Allan is out of surgery and in recovery. We got to see him for a few minutes. They are going to move him to the PICU as soon as they get a bed ready. We are not exactly holding our collective breath.
The eye surgery went as well as could have been hoped. The cataract came out and the retina and optic nerve look good and undamaged. The lump had gotten smaller and may just be an inflammatory mass. They were able to do a fine needle biopsy and get some cells from it and they hope that they will be able to tell for certain what it is or was. After the eye was finished, they put in a "peg" and that went smoothly, too.
Right now he is still on the ventilator. No word on whether they are going to try to extubate him today or just let him recover a little and give it a try tomorrow.
He will have to wear a little patch over his eye for a week to protect it and then, in two weeks, he'll be fitted for a contact lens. The doctor said it is much easier to put it in and out than you think it is going to be. It would almost have to be easier because I think it is going to be darned near impossible to wrestle Allan twice a day to put it in and take it out.
The eye surgery went as well as could have been hoped. The cataract came out and the retina and optic nerve look good and undamaged. The lump had gotten smaller and may just be an inflammatory mass. They were able to do a fine needle biopsy and get some cells from it and they hope that they will be able to tell for certain what it is or was. After the eye was finished, they put in a "peg" and that went smoothly, too.
Right now he is still on the ventilator. No word on whether they are going to try to extubate him today or just let him recover a little and give it a try tomorrow.
He will have to wear a little patch over his eye for a week to protect it and then, in two weeks, he'll be fitted for a contact lens. The doctor said it is much easier to put it in and out than you think it is going to be. It would almost have to be easier because I think it is going to be darned near impossible to wrestle Allan twice a day to put it in and take it out.
Wednesday, November 15, 2006
Tuesday, November 14, 2006
Computer woes
Sorry, folks. Been having problems with the computer at home.
At work now, but trying to earn a living.
The boys are fine. We go to see a couple of Allan's doctors tomorros in preparation for his surgery on Thursday. Still no word on what time his procedure will be. They'll call us tomorrow.
I will try to blog some tonight and post new pictures -- if the wi fi is cooperating.
At work now, but trying to earn a living.
The boys are fine. We go to see a couple of Allan's doctors tomorros in preparation for his surgery on Thursday. Still no word on what time his procedure will be. They'll call us tomorrow.
I will try to blog some tonight and post new pictures -- if the wi fi is cooperating.
Friday, November 10, 2006
Yesterday was kind of a big day. We had an appointment with the ophthalmologist at UK. Per the suggestions of the big muckety-mucks in Philly, we are going to have Allan's cataract removed on Thursday. No time for the surgery yet. They'll let us know by noon on Wednesday. Great. Thanks. Because the sitting and the wondering isn't enough for a week. Let's just see how much more unpleasant we can make the situation. While they have him under general anaethesia, they are going to go ahead and put in a G-tube (which they call a peg) which goes in to his intestine through an incision right below his rib cage. This will remove the need for the NG tube (the tube through his nose and into his stomach). The reality of it is that Big Al just can't eat p.o. (through his mouth from the bottle) enough to sustain his growth. He is doing well eating from the bottle, all things considered, but he just doesn't have the strength and the lung capacity to eat quite enough. (By way of comparison, not that we do that, Griffith, who weighs 2 pounds less than his brother can eat 5 or 6 ounces in about 20 minutes. Allan, on the other hand, can eat about an ounce or two in that same period of time. )The more he grows, the more he can eat at a sitting, so to speak, but it will be a while before he can do it all p.o. If we had world enough and time, we wouldn't be putting the tube in right now, but the fear is that if we don't go ahead and do it now, then we will be in a position of having to do it in 3,4, or 6 months from now and no one wants him to have to go under again and run the risks of surgery. So we essentially have a Hobson's choice -- any horse in the stable as long as it is that one. He will have to be intubated for the surgery and will have to stay in the PICU until he can be weaned off of it. No one is making any promises about how long this will take. We hope only a day or two.
So what else is going on? Griffith, after weeks of sleeping through the night, has decided to revert to his old pattern of waking up around 3 or 4 for early breakfast or late dinner or first snack or what-have-you. Last night was Dad's turn for that time slot. It is really like gambling -- some nights you get lucky and he doesn't wake up, but, if you aren't lucky, then it can get ugly. Dad thought that he would be clever and maybe, just maybe, wait Griff out (sometimes he will snuffle around, but go back to sleep -- Griffith, not Jay). No dice. Plus, Dad made the mistake of waiting too long to recognize that this was a Red Alert and not a False Alarm. Which meant that by the time that he got the formula heated up and ready to eat, Griff was so furious and was screaming so loud that there was no reasoning with him -- all he wanted was to eat, but he was howling so much that he couldn't swallow. I would like to say that I was able to sleep soundly through all of this, but 1) Griffith has an incredible ability to project and 2) Allan decided that this would be a dandy time to spit up all over himself and his bedclothes. After Igain managed to change him the first time, get him calmed down and get to bed, I had a solid 25 minutes before he managed to do it again. I know now why tigers eat their young.....
Today was a good day, though, they both looked and felt good. The weather was beautiful. The boys each took a walk with me for about an hour a piece this afternoon. The weekend is supposed to turn cold and rainy so we needed to take advantage of the situation while we could.
Aunt Kelly came in from Chicago and brought cute new clothes and toys (two noise makers -- watch out, KK, or I'll buy your kid a wood-burning kit). After a thorough inspection, she pronounced both of the little guys to be perfect. Naturally.
Off to bed for me now. I hope to have new pictures soon.
So what else is going on? Griffith, after weeks of sleeping through the night, has decided to revert to his old pattern of waking up around 3 or 4 for early breakfast or late dinner or first snack or what-have-you. Last night was Dad's turn for that time slot. It is really like gambling -- some nights you get lucky and he doesn't wake up, but, if you aren't lucky, then it can get ugly. Dad thought that he would be clever and maybe, just maybe, wait Griff out (sometimes he will snuffle around, but go back to sleep -- Griffith, not Jay). No dice. Plus, Dad made the mistake of waiting too long to recognize that this was a Red Alert and not a False Alarm. Which meant that by the time that he got the formula heated up and ready to eat, Griff was so furious and was screaming so loud that there was no reasoning with him -- all he wanted was to eat, but he was howling so much that he couldn't swallow. I would like to say that I was able to sleep soundly through all of this, but 1) Griffith has an incredible ability to project and 2) Allan decided that this would be a dandy time to spit up all over himself and his bedclothes. After Igain managed to change him the first time, get him calmed down and get to bed, I had a solid 25 minutes before he managed to do it again. I know now why tigers eat their young.....
Today was a good day, though, they both looked and felt good. The weather was beautiful. The boys each took a walk with me for about an hour a piece this afternoon. The weekend is supposed to turn cold and rainy so we needed to take advantage of the situation while we could.
Aunt Kelly came in from Chicago and brought cute new clothes and toys (two noise makers -- watch out, KK, or I'll buy your kid a wood-burning kit). After a thorough inspection, she pronounced both of the little guys to be perfect. Naturally.
Off to bed for me now. I hope to have new pictures soon.
Wednesday, November 08, 2006
We made it back in about 8 o'clock last night. The return trip took a lot longer than the original. It took us an hour and a half to cover the first 35 miles. If we had known that it was going to take that long, we would have just slept in.
Allan did great on the way back (naturally). He slept most of the day --- the day before was catching up with him, I suppose. He's all snuggled in at home today, though. We go to see the ophthalmologist tomorrow and (we guess) find out then when they can get the surgery scheduled.
Griffith seemed glad to see us, but he's just generally a happy kid. For the first time in weeks, though, he didn't go to sleep early and he didn't sleep through the night. Maybe he just wanted to make sure that we were still there.
Allan did great on the way back (naturally). He slept most of the day --- the day before was catching up with him, I suppose. He's all snuggled in at home today, though. We go to see the ophthalmologist tomorrow and (we guess) find out then when they can get the surgery scheduled.
Griffith seemed glad to see us, but he's just generally a happy kid. For the first time in weeks, though, he didn't go to sleep early and he didn't sleep through the night. Maybe he just wanted to make sure that we were still there.
Monday, November 06, 2006
And the answer is.....
we still don't know. No joke.
We have been seen by the premier ocular oncologists in the country and, to paraphrase, we've seen one of about everything but we don't know what this is. Great.
Not that they are without a plan or anything. They don't think that what they are calling the lesion is a malignancy, so we've got that going for us. They are mostly concerned with the cataract. So we return home and as soon as we get the all-clear from the pulmonologist, they are going to remove the cataract. It may be that the lesion is spilled lens material from the cataract and that the lesion is related inflammation that will resolce. It may be that it is something else that they will be able to get a better look at once the cataract is out.
Once again, though, Allan performed like a little angel. Everyone raved about how sweet and pretty he is. He causes quite a stir wherever he goes, that's for sure.
By all reports, Griff and Steph had a great time yesterday and Flora hustled her out as soon as she could. Flora is staying tonight so he will be completely spoiled by the time we get back tomorrow.
Even though it is only 6:30, I am ready for bed. Jay has gone out for a walk and to pick up take out. I plan on being out by 8.
We have been seen by the premier ocular oncologists in the country and, to paraphrase, we've seen one of about everything but we don't know what this is. Great.
Not that they are without a plan or anything. They don't think that what they are calling the lesion is a malignancy, so we've got that going for us. They are mostly concerned with the cataract. So we return home and as soon as we get the all-clear from the pulmonologist, they are going to remove the cataract. It may be that the lesion is spilled lens material from the cataract and that the lesion is related inflammation that will resolce. It may be that it is something else that they will be able to get a better look at once the cataract is out.
Once again, though, Allan performed like a little angel. Everyone raved about how sweet and pretty he is. He causes quite a stir wherever he goes, that's for sure.
By all reports, Griff and Steph had a great time yesterday and Flora hustled her out as soon as she could. Flora is staying tonight so he will be completely spoiled by the time we get back tomorrow.
Even though it is only 6:30, I am ready for bed. Jay has gone out for a walk and to pick up take out. I plan on being out by 8.
Sunday, November 05, 2006
Well, we've made it. It is amazing how much nothing there is between here and there. Allan was a doll nearly all day long. He started to get fussy about the last hour and an half or so, but so did I so I can't blame him for that. He is absolutely exhausted and racked out in the Pack n Play. He's probably a little worn out because his girlfriends came calling last night -- Alissa, Jen and Jenny all came by for a visit. All that doting wears a boy out.
Griffith is hanging out with Aunt Stephanie and, according to her, he has been perfect all day long. Flora has called twice to make sure that every thing is all right and to tell Stephanie that she will come right over if Stephanie needs her. She also told her that she will be there early tomorrow so that Stephanie can go on home. Subtle. Very subtle.
We start out at the hospital at 6:30 in the morning and have been told to expect 8 hours of appointments and testing. We anticipate staying here tomorrow night, too, since it will probably be too late to start back by the time we are through. We'll keep you updated as best we can. Wish us luck.
Griffith is hanging out with Aunt Stephanie and, according to her, he has been perfect all day long. Flora has called twice to make sure that every thing is all right and to tell Stephanie that she will come right over if Stephanie needs her. She also told her that she will be there early tomorrow so that Stephanie can go on home. Subtle. Very subtle.
We start out at the hospital at 6:30 in the morning and have been told to expect 8 hours of appointments and testing. We anticipate staying here tomorrow night, too, since it will probably be too late to start back by the time we are through. We'll keep you updated as best we can. Wish us luck.
Saturday, November 04, 2006
We are packed up and sacked up and ready (ish) to go. We leave at the crack of dawn. Or whatever passes for the crack of dawn to Jay. My guess is that it will be O Dawn Thirty and post a shave, shower, cup of coffee, mincing time, etc. before we hit the road. So. Either 6:30 or 8. I know what my guess is.
Getting this boy on the road requires as much planning as the Normandy invasion.
Anyway, thanks for the good thoughts, wishes and prayers. Keep it up. I will try to blog from the hospital but don't know if they havce wi-fi.
Getting this boy on the road requires as much planning as the Normandy invasion.
Anyway, thanks for the good thoughts, wishes and prayers. Keep it up. I will try to blog from the hospital but don't know if they havce wi-fi.
Friday, November 03, 2006
We're off to see the Wizard....
Allan gets to make that road trip after all. The spot in his eye has changed and the docs down here don't know what to make of it and so off we go. We have an appointment at 6:30 Monday morning. The folks at the Wills Eye Hospital are meant to be the best of the best and Allan demands nothing less. Keep your fingers crossed and say a little prayer.
Tuesday, October 31, 2006
happy halloween - part ii
The boys have had a good Halloween. They both got dressed up and watched the trick or treaters. Right now, Allan is eating with Dad and Griff is sitting in my lap while I blog. He's just fine as long as he is up and in the middle of whatever is going on but God forbid if he has to be Down as opposed to Up. Or is to the Side instead of In the Middle. If he weren't so charming, he might be considered a pain. Allan, of course, endures all with a Buddha-like zen. Except for when he whinges. I tell him "stiff upper lip, Richardson" but it is the quivering lower lip that is the problem. We are determined to get it on video so that we can play it at his rehearsal dinner some day. Make sure his wife knows what she is in for....
Enjoy the photos. I didn't realize how remiss I had been.
Enjoy the photos. I didn't realize how remiss I had been.
Happy Halloween!
Well, we've got good(ish) news. The doc in Philly has looked at the photos and records, etc., and says that she really thinks that the lump is JXG and not something worse or awful. We are to continue what we are doing, keep an eye on it and it should regress within the next 4-6 weeks. Then we will be in a position to have Allan's cataract removed. So no big road trips for Allan unless he doesn't cooperate with this eye.
The weather was so beautiful yesterday afternoon that we took several walks. First I took Griffith for a walk while Allan slept. We got home and Allan was awake so we plunked him in the stroller and all three of us went walking. Then Griffith got hungry, dirty and fussy so Allan and I gave him back to Flora and we went solo. All-in-all I walked for nearly three hours with one, the other or both of them. And it is a good thing I did because the weather has turned cold and gloomy again today. Appropriate for Halloween, though. Cheryl came through with the boys' outfits so we'll have them dressed up. No trick or treating this time, but we seize every opportunity for photos that we can.
The weather was so beautiful yesterday afternoon that we took several walks. First I took Griffith for a walk while Allan slept. We got home and Allan was awake so we plunked him in the stroller and all three of us went walking. Then Griffith got hungry, dirty and fussy so Allan and I gave him back to Flora and we went solo. All-in-all I walked for nearly three hours with one, the other or both of them. And it is a good thing I did because the weather has turned cold and gloomy again today. Appropriate for Halloween, though. Cheryl came through with the boys' outfits so we'll have them dressed up. No trick or treating this time, but we seize every opportunity for photos that we can.
Sunday, October 29, 2006
The recap
Friday was both amusing and disappointing. Jay took Allan to have the spots on his head biopsied. You know, the ones that appeared right as he left the hospital last time and immediately before the eye problem developed. Those spots on the top of his head. The dermatologist here looked at them and got out her swab to clean the area before taking a sample and lo and behold -- off they came. Yep. That's right. The spots were betadine from where they had tried to take blood from the bean before he came home. Now before any one jumps to any hasty conclusions about how clean we are, let me say that the bean had had his little head washed on numerous occasions since coming home (you don't want to cast any aspersions on how well Flora takes care of her boys). However, since we weren't using alcohol swabs, the spots remained. We felt pretty silly, of course, but not nearly as silly as the head of dermatology at UC should feel (along with his two residents) because he was absolutely confident that they were nevus. And so were they (as if they would have said otherwise). Any way, that's the amusing part. The disappointing part is that we were hoping that we would have confirmation that Allan has JXG so that we could move on with a plan of action. No such luck. The ophthalmologists have emailed all sorts of friends, colleagues, acquaintances, etc. with pictures and descriptions of Allan's eye and every one has an opinion but no one can say definitively what we've got and what we ought to do about it. Our main doc managed to get through to one of the country's pre-eminent docs in this field on Friday and she has agreed to look at the photos and records and see if she can help out. In the meanwhile, we keep on keeping on.
Griffith has been an absolute angel. He has gone from being the World's Angriest Infant to Mr. Chuckles. He laughs all the time and at everything. When he isn't laughing, he's smiling. He can still go from that to furious if you let him get hungry or, God forbid, wet or dirty, but as long as you respond quickly to fix the situation, he is willing to get over it. Mostly he likes to sit up in your lap and hang out. He is very entertained by the flow of conversation. Today he spent quite awhile hanging out with a lobster rattle (go with it) that he held tightly in his right hand. It was all big fun, except for the way he kept banging himself in the face with itl.
Not to be outdone, Big Al took over the lobster rattle this afternoon and he, likewise, spent a fair amount of time shaking it and banging himself in the face with it. I should have bought two of those things.
Allan goes back to the eye doctor in the a.m. We will update you when we know something.
Griffith has been an absolute angel. He has gone from being the World's Angriest Infant to Mr. Chuckles. He laughs all the time and at everything. When he isn't laughing, he's smiling. He can still go from that to furious if you let him get hungry or, God forbid, wet or dirty, but as long as you respond quickly to fix the situation, he is willing to get over it. Mostly he likes to sit up in your lap and hang out. He is very entertained by the flow of conversation. Today he spent quite awhile hanging out with a lobster rattle (go with it) that he held tightly in his right hand. It was all big fun, except for the way he kept banging himself in the face with itl.
Not to be outdone, Big Al took over the lobster rattle this afternoon and he, likewise, spent a fair amount of time shaking it and banging himself in the face with it. I should have bought two of those things.
Allan goes back to the eye doctor in the a.m. We will update you when we know something.
Thursday, October 26, 2006
Quick post
Big day today.
We are taking Allan back to the ophthalmologist here for a check on whether the lump is shrinking. We are also going to see a gastroenterologist who specializes in pediatric feeding issues. Allan takes from the bottle, but not nearly enough and, with everything else that keeps happening to him, it is hard for him to pick up any steam with that. The NG tube really isn't a long-term solution and we have known that it was possible that they might want to put in a "peg" at some point (a port in to the belly that you use to feed). The thought is that we may want to do that when they do the cataract rather than wait and have a second surgery. So there you go.
Griffith is being a little rock star and has been sleeping through the night for about the past week. This means he stays up until about 11, but we think it is worth it to have him sleep until 7.
More later.
We are taking Allan back to the ophthalmologist here for a check on whether the lump is shrinking. We are also going to see a gastroenterologist who specializes in pediatric feeding issues. Allan takes from the bottle, but not nearly enough and, with everything else that keeps happening to him, it is hard for him to pick up any steam with that. The NG tube really isn't a long-term solution and we have known that it was possible that they might want to put in a "peg" at some point (a port in to the belly that you use to feed). The thought is that we may want to do that when they do the cataract rather than wait and have a second surgery. So there you go.
Griffith is being a little rock star and has been sleeping through the night for about the past week. This means he stays up until about 11, but we think it is worth it to have him sleep until 7.
More later.
Tuesday, October 24, 2006
JXG
That's our diagnosis.
We've had a big day with Allan's first trip out of state. Granted it was just Ohio, but still and all. We headed out early this a.m. for the University of Cincinnati where they have a Very Special Ultrasound. Once again Allan distinguished himself by being an absolute angel and cooperating with the doctors. He couldn't have been sweeter and, as a result they got a lot of good images. The conclusion is that the lump in his eye is something called a juvenile xanothogranuloma. It is a noncancerous mass of cells that develops usually in the head and trunk at about Allan's age. It sometimes (rarely, naturally) will develop in the eye. It is treated with medicines and should recede over time. The bad part is that the inflammation has caused his cataract to grow so that it is now impairing his vision. So for now we treat the JXG until that lump is small enough for them to do something about the cataract. If it isn't one thing, it is another.
Griffith is being an absolute angel. Sorta. He is now sleeping through most of the night but only by Scooby-snacking, cat-napping and whining throughout most of the evening. Flora is convinced that he can tell when she has picked Allan up because he starts to fuss.
Cheryl brought over their Halloween outfits. We aren't going to give too much away by saying that they are going to be A.Dor.Able. Can't wait.
We've had a big day with Allan's first trip out of state. Granted it was just Ohio, but still and all. We headed out early this a.m. for the University of Cincinnati where they have a Very Special Ultrasound. Once again Allan distinguished himself by being an absolute angel and cooperating with the doctors. He couldn't have been sweeter and, as a result they got a lot of good images. The conclusion is that the lump in his eye is something called a juvenile xanothogranuloma. It is a noncancerous mass of cells that develops usually in the head and trunk at about Allan's age. It sometimes (rarely, naturally) will develop in the eye. It is treated with medicines and should recede over time. The bad part is that the inflammation has caused his cataract to grow so that it is now impairing his vision. So for now we treat the JXG until that lump is small enough for them to do something about the cataract. If it isn't one thing, it is another.
Griffith is being an absolute angel. Sorta. He is now sleeping through most of the night but only by Scooby-snacking, cat-napping and whining throughout most of the evening. Flora is convinced that he can tell when she has picked Allan up because he starts to fuss.
Cheryl brought over their Halloween outfits. We aren't going to give too much away by saying that they are going to be A.Dor.Able. Can't wait.
Monday, October 23, 2006
Onward and upward -- Allan's eye is pretty much the same. The redness has cleared up, the pressure is back to normal, but there is still something in there that is keeping the pupil from fully dilating. They keep calling it a lump, but they don't know what it is -- fluid? a cyst? So, we are off for Cincinnati tomorrow to see a specialist up there who has a high resolution ultrasound. With any luck, he will be able to tell us what this thing is. And what we are going to do about it.
Saturday, October 21, 2006
We've had a couple of busy days. To take it in order, we got home Thursday night about 6:30 or so but had to be back for the chair of the ophthamology department to take a look at Allan's eye Friday morning. He did and apparently all of the ophthamologists who had looked at him over the past 3 days did as well. We had 3 kinds of drops that we had been using and one, the other or a combination of the 3 had had an effect and they could actually get a look at the back of his eye. This allowed them to rule out ROP. What it didn't allow them to do was figure out what was wrong with it. What else do you expect from Allan? The eye is inflamed (although less), the pressure was up (although some of the drops had reduced that) and there is "bombaying" or a lump on his eye. In addition, either his cataract has grown or has been displaced by the inflammation or pressure or both. For now, we are going to continue treating the symptoms since he does seem to be getting better and keep our fingers crossed. Every one was going to go home and think big thoughts and try to come up with a theory about what this is. They've also emailed photos and descriptions to some colleagues (friends, neighbors, a guy I once heard of who knew something about eyes....) We go back Monday first thing for another exam and more head-scratching. We'll let you know.
Thursday, October 19, 2006
Home again, home again...
We made it back home at about 6 p.m. today. Allan is doing just fine -- he spent most of the day at the hospital but this is his shortest stay by far. No true explanation for why his heart rate did what it did -- they dosed him with Tylenol last night and it seemed to help until early this a.m. when he did it again. The best guess is that he was feverish from the vaccines which can make your heart rate go up. On top of that we added the eye drops, the side effect of which can be making your heart rate go up, etc. At any rate, that seems to be under control. With respect to his eye issue, we are still largely in the dark. We had yet another opthalmologist checking him out today and the chair of the department is going to look at it tomorrow. The best guess is that it is an atypical presentation of delayed ROP. Yes, that would be our son -- Allan the Atypical. The drops we are using seem to be helping some. The pressure in his eye has been reduced back to normal which is good. The drops to expand the pupil seem to be helping, too. The retinal specialist who looked at him today doesn't think that his is a problem requiring surgical interventation and that they may be able to do some cryo/freezing procedure that will take care of the overgrowth of blood vessels. At any rate, the docs are going to caucus tomorrow and come up with some proposal. Still, Allan's eye looks better and he seems to be quite comfortable.
More tomorrow when we know something.
More tomorrow when we know something.
Wednesday, October 18, 2006
A mixed bag
Today has been a mixed bag. First, Griff went to NICU Graduate Clinic at 9. He did great. In fact, he is a little show off. Among other things, they were checking to see how he was developing. With the exception of a little need to focus on his shoulder and chest strength, he was a little rock star. He is a whopping 21.75 inches long and weighs in at 9 pounds and 11 ounces. He isn't the biggest kid on the block, but he is gaining ground and is quite impressive. He tracks or follows objects, he can keep his head even with his body when pulled up and he has good balance when sitting up (with assistance). Although I thought he was going to become infuriated with the physical exam, he thought it was a lot of fun and laughed out loud at some of the nurse practitioner's antics. Flora was quite jealous. Griff also got his 6 month vaccines and has been a doll baby ever since. Which is a good thing. Now for the mixed part...
Allan doesn't have pink eye or anything else nearly as innocuous. The working theory is that he has the delayed onset of ROP which is a condition preemies have where they develop vascular abnormalities in their eyes. It is rare (like buy an effing lottery ticket) rare that someone as old as Allan would develop it, but, there you (may) have it. We got a go directly to the opthalmologist card when we turned up at the pediatrician's today. Saw everyone who was in the office this afternoon, have drops to put in poor Big Al's eyes. The condition of his eyes is such that they can't tell for sure what is going on, but it seems that blood vessels are suddenly growing where they shouldn't in one eye. The pressure in that eye is high (think glaucoma) and we are using three different drops to try to reduce pressure and inflammation so that they can get a better view of what's going on. He weighed in at 11 pounds 15 ounces and 22 inches long. He hasn't had a good night -- his heart rate was too high and he was running a temp. This may all be due to the vaccines today, but we couldn't take the risk and Dad is doing the emergency run even as I type. With any luck he will be discharged tomorrow, but they aren't going to play around with someone as small and fragile as he is.
Anyway, say a prayer that this eye thing amounts to a mountain out of a molehill and I will try to blog early tomorrow afternoon.
Allan doesn't have pink eye or anything else nearly as innocuous. The working theory is that he has the delayed onset of ROP which is a condition preemies have where they develop vascular abnormalities in their eyes. It is rare (like buy an effing lottery ticket) rare that someone as old as Allan would develop it, but, there you (may) have it. We got a go directly to the opthalmologist card when we turned up at the pediatrician's today. Saw everyone who was in the office this afternoon, have drops to put in poor Big Al's eyes. The condition of his eyes is such that they can't tell for sure what is going on, but it seems that blood vessels are suddenly growing where they shouldn't in one eye. The pressure in that eye is high (think glaucoma) and we are using three different drops to try to reduce pressure and inflammation so that they can get a better view of what's going on. He weighed in at 11 pounds 15 ounces and 22 inches long. He hasn't had a good night -- his heart rate was too high and he was running a temp. This may all be due to the vaccines today, but we couldn't take the risk and Dad is doing the emergency run even as I type. With any luck he will be discharged tomorrow, but they aren't going to play around with someone as small and fragile as he is.
Anyway, say a prayer that this eye thing amounts to a mountain out of a molehill and I will try to blog early tomorrow afternoon.
Tuesday, October 17, 2006
Short blog. Allan seems to have pink eye and a stomach ache and has wanted to be held all day and night. Griffith doesn't have that excuse but still wants to be held.
Tomorrow Griffith has an early appointment at the NICU Graduate Clinic and then they both have their 6 month check ups and vaccines so they may be fussy tomorrow.
Tomorrow Griffith has an early appointment at the NICU Graduate Clinic and then they both have their 6 month check ups and vaccines so they may be fussy tomorrow.
Monday, October 16, 2006
The weekend recap
The boys have had another good weekend and, so far, this week is starting off pretty well.
Jay was out of town Thursday until Saturday afternoon so we called in reinforcements. Jen came over to see her Pretty Boy (Allan) and he smiled all over himself at her. As soon as she picked him up, though, he hurled every ounce of formula that he had ever eaten right straight down her cleavage. We don't know whether this was retribution for all the rude things she did to him in the NICU or if he was just so delighted to see her that he tossed his cookies. It didn't seem to deter her much, though, because she kept telling him how pretty he was and she came back today to hold him again (no projectile vomiting this time.) Stephanie came on Friday and was whirling like a dervish, holding first one kid and then the other. Kim must have kept Griffith up all night because, on Friday night, he slept the whole night through for Stephanie. Dad made it back Saturday afternoon and took on the boys solo so that Momma could spend some time out. It really didn't even matter where -- just out was fine. Jay was very impressed that Griffith slept through Saturday night -- until I pointed out that the only one who slept through that night was Jay. Griffith and I were up, per usual, at 2:30 and Allan and I were up at 4.
I spent a fair amount of time Saturday acquiring fall and winter wear for the boys. Miss Flora has a lovely, indirect way of letting me know when she thinks that I need to do something. Friday, it was "when do you think we should start putting undershirts on the boys?" Um. Dunno. Today? Just a guess. Any way, in pursuit of undershirts with side snaps for Allan (hard to get pullovers on him because of the oxygen tubing), I managed to find a bunch of little hats (Flora is a big fan of hats, too). Two of the acquisitions have made the blog already. Griff thought he looked pretty fetching in his and he wore it almost all day today. He was quite a little pill today, too. He would take a little sip of his bottle, fall asleep and then wake up as soon as you tried to lay him down. Not just wake up. Wake up and scream and cry real tears. This went on, literally, all afternoon. Flora is pretty sure that someone has spoiled him but she isn't sure who to blame. Possibly someone who comes in at night?
We take Griff back to the NICU Graduate Clinic on Wednesday morning and then both boys get their month shots that afternoon. Other than that, we plan on sitting tight, hanging out and getting bigger.
Jay was out of town Thursday until Saturday afternoon so we called in reinforcements. Jen came over to see her Pretty Boy (Allan) and he smiled all over himself at her. As soon as she picked him up, though, he hurled every ounce of formula that he had ever eaten right straight down her cleavage. We don't know whether this was retribution for all the rude things she did to him in the NICU or if he was just so delighted to see her that he tossed his cookies. It didn't seem to deter her much, though, because she kept telling him how pretty he was and she came back today to hold him again (no projectile vomiting this time.) Stephanie came on Friday and was whirling like a dervish, holding first one kid and then the other. Kim must have kept Griffith up all night because, on Friday night, he slept the whole night through for Stephanie. Dad made it back Saturday afternoon and took on the boys solo so that Momma could spend some time out. It really didn't even matter where -- just out was fine. Jay was very impressed that Griffith slept through Saturday night -- until I pointed out that the only one who slept through that night was Jay. Griffith and I were up, per usual, at 2:30 and Allan and I were up at 4.
I spent a fair amount of time Saturday acquiring fall and winter wear for the boys. Miss Flora has a lovely, indirect way of letting me know when she thinks that I need to do something. Friday, it was "when do you think we should start putting undershirts on the boys?" Um. Dunno. Today? Just a guess. Any way, in pursuit of undershirts with side snaps for Allan (hard to get pullovers on him because of the oxygen tubing), I managed to find a bunch of little hats (Flora is a big fan of hats, too). Two of the acquisitions have made the blog already. Griff thought he looked pretty fetching in his and he wore it almost all day today. He was quite a little pill today, too. He would take a little sip of his bottle, fall asleep and then wake up as soon as you tried to lay him down. Not just wake up. Wake up and scream and cry real tears. This went on, literally, all afternoon. Flora is pretty sure that someone has spoiled him but she isn't sure who to blame. Possibly someone who comes in at night?
We take Griff back to the NICU Graduate Clinic on Wednesday morning and then both boys get their month shots that afternoon. Other than that, we plan on sitting tight, hanging out and getting bigger.
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