As Carolyn mentioned, Max now wears a patch over his stronger eye for half an hour each day. Interesting fact: pediatric eyepatches come in gender-specific varieties. The doctor only had patches designed for girls when Max visited, so that's what he wore for the first week. Since then, we've gotten several boxes of patches designed for boys. As you might imagine, the dominant theme is of pirates; the patches sport cutlasses, boats, and the jolly roger. However, first impressions are hard to shake, and I'll always associate these patches with pink unicorns (shown in this picture).
Wednesday, January 20, 2010
Tuesday, January 19, 2010
A few updates
Max continues to enjoy a stretch of healthy days (since just before Christmas). He's been eating well -- pears, avocados, tofu, Doris' special lentil soup, and cracker snax. I was certain that he had gained a ton of weight over the last 2 weeks, but in fact he gained 2 ounces, bringing him to 20 lb, 7 oz. I was a bit disappointed that he hadn't gained enough for us to cut back his nighttime feeds again, but on reflection am glad that he is healthy, happy, and gaining even a little bit.
Earlier this month, Max had a routine check-up with the ophthalmologist. The good news is that his optic nerve looked good, there was no indication of intracranial pressure, and he still just has pseudostrabismus. But the doc did detect some laziness in Max's left eye, so the plan is to put a patch over his stronger right eye for 30 minutes per day for the next 3 months. If this doesn't strengthen his eye sufficiently, he'll need to have glasses.
Max has been really active lately, and over the long weekend practiced cruising along the sofa and coffee table (he has a few chin scrapes to show for it), climbing stairs, generally squirming around. It is a delight to see. New NG tube today, after a "free" day. We see the GI nurse practitioner on Monday and will get further guidance about the feeding plan then.
Earlier this month, Max had a routine check-up with the ophthalmologist. The good news is that his optic nerve looked good, there was no indication of intracranial pressure, and he still just has pseudostrabismus. But the doc did detect some laziness in Max's left eye, so the plan is to put a patch over his stronger right eye for 30 minutes per day for the next 3 months. If this doesn't strengthen his eye sufficiently, he'll need to have glasses.
Max has been really active lately, and over the long weekend practiced cruising along the sofa and coffee table (he has a few chin scrapes to show for it), climbing stairs, generally squirming around. It is a delight to see. New NG tube today, after a "free" day. We see the GI nurse practitioner on Monday and will get further guidance about the feeding plan then.
A tube-free day
It was time for an NG tube change (those things get gross around the 3-4 week mark), so we pulled it out this morning and let Max be free for the day. Here he is playing at one of his current favorite toys - the music table.
Tuesday, January 5, 2010
Max plays the shell game
Max is starting to experiment with gestures. He will sometimes wave, although he's probably confused about what waving means because when he flaps his hand at us it sets off a few minutes of furious waving by every adult in sight (house rule--no exception for visitors). But he's always watching us and, in the manner of children, sees and hears gestures and words that we don't realize we're making. For example, Carolyn has been playing the shell game with Max; he likes it and always finds the ball (at some point we're going to have explain to him that he should decline invitations to play on the sidewalks of New York City). Unconsciously, Carolyn turns up her palms when asking "Where's the ball?" When Max now puts a ball down, he will sometimes mimic the gesture, looking like a tiny Borscht belt comedian hitting a punchline. Apparently, Max thinks that palms up means something like "I've put down the ball".
The video below captures some of this, as well as a lot of miscellaneous domestic chaos. (Click here if you can't see the embedded video.)
The video below captures some of this, as well as a lot of miscellaneous domestic chaos. (Click here if you can't see the embedded video.)
Max Plays the Shell Game from Codered Summer on Vimeo.
Saturday, January 2, 2010
Climbing
As Carolyn mentioned, Max has recently begun crawling (with help) up carpeted stairs. I took the video below a couple of days ago; I'd say Max has gotten even better at climbing since then.
Stair Climbing from Codered Summer on Vimeo.
One year ago
This picture shows Max in what Carolyn and I referred to as the "McMansion" crib. He had outgrown the little lucite boxes used for neonates, but he wasn't able to survive without intensive medical control.
I can't remember now whether, when this picture was taken, he was in the step-down NICU or still in the high-intensity ward (indeed, the NICU would sometimes consolidate all of their patients into a single room when business was slow). I do see that Max was getting supplemental oxygen via a nasal cannula, something he needed off and on for much of his stay at Georgetown.
Reading back through our notes from late December and early January, I see that Max's clinical situation at the time was still precarious, and that we were considering a variety of surgeries--shunt, Hirschsprung's biopsy and, for the first time, something called a "fundoplication".
I also notice that I expected these matters to be resolved one way or another in the near future. But January 2009 would be a long, tense wait during which nothing in particular happened. (Our insurance company took the same view and retroactively denied coverage for Max's hospitalization in January; they later reversed themselves so we were not impoverished by the stroke of a pen.) In some sense, the whole of 2009 was an exercise in patience. In fact, I would divide the year into thirds: the first third in the hospital, the second third grappling with the hospital-at-home, and the last third watching Max get himself organized and start to make progress.
I can't remember now whether, when this picture was taken, he was in the step-down NICU or still in the high-intensity ward (indeed, the NICU would sometimes consolidate all of their patients into a single room when business was slow). I do see that Max was getting supplemental oxygen via a nasal cannula, something he needed off and on for much of his stay at Georgetown.
Reading back through our notes from late December and early January, I see that Max's clinical situation at the time was still precarious, and that we were considering a variety of surgeries--shunt, Hirschsprung's biopsy and, for the first time, something called a "fundoplication".
I also notice that I expected these matters to be resolved one way or another in the near future. But January 2009 would be a long, tense wait during which nothing in particular happened. (Our insurance company took the same view and retroactively denied coverage for Max's hospitalization in January; they later reversed themselves so we were not impoverished by the stroke of a pen.) In some sense, the whole of 2009 was an exercise in patience. In fact, I would divide the year into thirds: the first third in the hospital, the second third grappling with the hospital-at-home, and the last third watching Max get himself organized and start to make progress.
Wednesday, December 30, 2009
Crawling into 2010
Max is ready to leave 2009 behind. He got over his cold&fever bout of November-December, and has had a healthy two weeks -- active and happy, eating well, no sniffles. He has also really taken off crawling and seems to enjoy exploring his environment (see videos at the end of this post). His most recent conquest: going up the carpeted stairs (no videos of this yet). I am happy, grateful, full of amazement and so much more. There were many times in the last year that I wondered whether Max would be able to reach this point. At the same time we are so happy with his progress, I am also guarded -- does taking a small bit of pleasure mean that we'll have to pay a price tomorrow? next week? I realize it is magical thinking and yet can't help myself.
On the eating front, Max's weight stayed stable from Thanksgiving until mid-December. We were disappointed with no weight gain, but the GI nurse's view was that if Max was able to hold stable during the triple-threat (being sick, learning to crawl, and having Doris gone for extended periods during that time), he was actually doing quite well. She advised us to hold the course during the holidays, not weigh him or change his overnight feed volume. Next week, if Max is healthy, we will do another nighttime cut-back and see how he responds with eating during the day.
And now for some video treats to ring in the new year (taken about 10 days ago):
On the eating front, Max's weight stayed stable from Thanksgiving until mid-December. We were disappointed with no weight gain, but the GI nurse's view was that if Max was able to hold stable during the triple-threat (being sick, learning to crawl, and having Doris gone for extended periods during that time), he was actually doing quite well. She advised us to hold the course during the holidays, not weigh him or change his overnight feed volume. Next week, if Max is healthy, we will do another nighttime cut-back and see how he responds with eating during the day.
And now for some video treats to ring in the new year (taken about 10 days ago):
Max's Bottle Chase from Codered Summer on Vimeo.
In the Kitchen from Codered Summer on Vimeo.
Sunday, December 6, 2009
The budding athlete
For the past several days Max and Felix have been enjoying a bout with a classic winter head cold. The best thing about these colds is that they remind me how idyllic life is when the kids don't have colds. In the same way, I wake up every morning and savor the sensation of not having a toothache. (Unless I actually have a toothache, in which case I take far too much Ibuprofen and hope it goes away. a surprisingly effective strategy.) The post-nasal drip and congestion are really hard on Max, because the mucus has to run down the same course as his feeding tube. It seems that his reflux is more aggressive and appetite worse when he's sick. This set of colds appear, knock on wood, to have run their course.
Another double-edged benefit of a cold is that Max is more likely to sneeze out his feeding tube, allowing us to take picture of him without his facetape. Here's a picture of him in the morning sunlight, holding a football:
Max is obsessed with balls of all kinds, and has shown some mastery of the football, whose aerodynamic properties are unfathomable to those of us who had to wait until age 8 to handle one. Indeed, more broadly, Max entertains himself with basketballs, soccer balls and so on for long stretches of time. It is my theory that he has inherited the sports gene that I sadly lack. Either it skipped a generation, or he got it from his mother, or possibly both.
The embedded video below (click here if you don't see it) shows Max catching, throwing and scampering after various balls. Indeed, over the past couple of weeks, Max seems to be diligently studying the fine art of crawling. He doesn't (as you'll see) have the skill mastered, but he's getting better.
Carolyn asked that I produce a concise best-of-Max-crawling video to avoid boring everyone. It's surprisingly difficult to cook 45 minutes of raw footage into a 90 second highlight reel. So far the best I've been able to manage is the seven-and-a-half minute video below. At least you get to listen to Alan Bean describe a sunrise while on a spacewalk.
Another double-edged benefit of a cold is that Max is more likely to sneeze out his feeding tube, allowing us to take picture of him without his facetape. Here's a picture of him in the morning sunlight, holding a football:
Max is obsessed with balls of all kinds, and has shown some mastery of the football, whose aerodynamic properties are unfathomable to those of us who had to wait until age 8 to handle one. Indeed, more broadly, Max entertains himself with basketballs, soccer balls and so on for long stretches of time. It is my theory that he has inherited the sports gene that I sadly lack. Either it skipped a generation, or he got it from his mother, or possibly both.
The embedded video below (click here if you don't see it) shows Max catching, throwing and scampering after various balls. Indeed, over the past couple of weeks, Max seems to be diligently studying the fine art of crawling. He doesn't (as you'll see) have the skill mastered, but he's getting better.
Carolyn asked that I produce a concise best-of-Max-crawling video to avoid boring everyone. It's surprisingly difficult to cook 45 minutes of raw footage into a 90 second highlight reel. So far the best I've been able to manage is the seven-and-a-half minute video below. At least you get to listen to Alan Bean describe a sunrise while on a spacewalk.
Max at play from Codered Summer on Vimeo.
Sunday, November 29, 2009
Medical Roundup
It is an understatement to say that, for much of the past year, Max's medical management and feeding issues have dominated our daily (and nightly) interactions with him. But it feels like we are getting to the point where those things, while still constant, are far from the defining features of life with Max.
Especially thinking back to a year ago, Max has come so far: It was the Tuesday after Thanksgiving that Andreas and I met with the neurosurgeon at Children's to get a second opinion on strategies being used by the Georgetown NICU docs to manage Max's intracranial pressure. (It still amazes me that this neurosurgeon responded to our email on the day after Thanksgiving, called us, and arranged to see us the following Tuesday. He is amazing doc, and one we are willing to wait 3 hours to see -- see story below). Max got his last lumbar tap on Thanksgiving day last year; he was still having breathing problems with regular desats, apnea episodes, and heart rate fluctuations; and his reflux would not be evident until a month from now. It is truly amazing how far Max has come. He is one tough kid.
Of course Max's days of medical management, feeding challenges, and therapies continue. Here's an update on his various fronts:
* Hydrocephalus. Max had a CT scan and saw the neurosurgeon Dr. K on Nov. 16. We were at Children's Hospital from 9 am until 2 pm. Long day, but Max handled it like a champ (sleeping for 1.5 hours on my shoulder). The CT showed that his ventricles are stable but still "generous" in Dr. K's words. Max's head is growing and still much larger than kids his age, but his growth in on his own concave trajectory which is expected. Max was throwing the ball around the exam room while Dr. K ran after it. A good time was had by all, and Dr. K said that he would not recommend putting in a shunt at this point. We return to Dr. K in 6 months for another CT and checkup (or before if any signs of pressure appear).
* NG Tube / feeding / weight gain. Max is still fed through the NG tube while he sleeps at night. During the day, he eats pureed food by spoon, little puffs (which he is learning to pick up with his fingers), and formula from the bottle. At a single "meal," he might eat just 1/3 to 1/2 of a jar of baby food, but he does so willingly and we just stop when he turns away. His oral intake of formula from the bottle is anywhere from 200-350 cc per day. His reflux seems to be gone or very well under control, though every once in a while he does have emesis. We think this is from choking on his tube, but maybe the reflux is still a factor. But for now at least, it looks like Max will avoid the fundoplication surgery (where the stomach is tied around the esophagus to stop the reflux).
So Max has shown that he CAN eat by mouth. Why does he still have the NG tube? Well, he's had it for over a year now and his body has become accustomed to it. Why eat by mouth when you can have it delivered directly? We can't just pull it out and let him go hungry for long periods of time because of his nutritional needs for physical and cognitive growth (the GI doc says that studies show it takes monkeys about 2 weeks to develop a normal hunger-eating cycle).
The GI team has given us a plan to wean Max very slowly from the NG tube. If this works, he can avoid getting a stomach tube (G-tube) for feeding. If the process stalls and it looks like the NG tube needs to come out for breathing or speech purposes, then at some point Max may still need a G-tube.
Here's the plan: Max gets weighed every 2 weeks, and if he gains 5 ounces, then we cut back 2 ounces from his nighttime tube feedings. The hope is that he will slowly pick up the slack during the day. We rented a home scale so we can always measure him on the same scale and don't have to take him to a doctor's office just to get weighed. So far, over about a month, Max gained 13 ounces in the first 2 weeks; then 5 ounces in the second 2 weeks. That makes his current nighttime volume through the NG tube 360 cc (or about 12 ounces).
And for the record, Max now weighs 19 lbs 8 ounces, and is 29 inches long.
* Sleeping. Because Max still gets fed through the NG tube at night, he still has to sleep in his crib, on a 30 degree incline, on his stomach, in the Tucker sling while the feed is running. He typically wakes up around 4 or 5 a.m. and wants to move around, but can't because he's strapped in the sling. Because his feed is now ending around 3:30 or 4 a.m., he doesn't need to be in the sling all night. So when he wakes up, we move him to his Pack & Play to sleep for the rest of the night. He seems to like this because he can move around and get comfortable. Instead of waking up for the day at 6 am, he is now sleeping until 7 or even 8 am! This is good, because if he really wants to be part of our family, he CANNOT be an early riser.
* Medicines. Max is now on 4 medicines, delivered at 4 humane times of the day (7 a.m., 3 p.m., bedtime, and 11 p.m.). We recently changed dosages and timing to eliminate the 2 a.m. medicine. Andreas is very happy! Current meds are: Prevacid (for reflux); Erythromycin (an antibiotic which at low doses is used for motility); Culturelle (a probiotic that keeps good bacteria in his stomach); and a multivitamin with iron. As of late September, the pulmonary docs said Max did not need his diuretic (Aldactazide) any more.
* Therapies. Max is getting speech therapy (for eating) once every 3 weeks, physical therapy once every 2 weeks, and occupational therapy once every 1-2 weeks. And of course Doris therapy every weekday.
* Vaccines. Max was on top of the list for the H1N1 vaccine. In fact, we all got a dose back in early October when the vaccines were first available, thanks to Max's high-risk status. At his 1-year physical a few days ago, Max got his second dose of the H1N1 vaccine, his second dose of the seasonal flu vaccine, and his vaccines for DTaP, polio, and something else. I thought we might be in for a miserable weekend, but he seems to have shaken all those vaccines off. Let's keep our fingers crossed.
* Synagis. Max was also approved by our insurance company for a cycle of Synagis this year. It is a monthly shot of antibodies, delivered October through April, to protect against respiratory syncytial virus (RSV). Each shot is pretty expensive, and we are relieved that our insurance is covering this.
That's it for the medical roundup. Keep watching for other more exciting Max updates.
Especially thinking back to a year ago, Max has come so far: It was the Tuesday after Thanksgiving that Andreas and I met with the neurosurgeon at Children's to get a second opinion on strategies being used by the Georgetown NICU docs to manage Max's intracranial pressure. (It still amazes me that this neurosurgeon responded to our email on the day after Thanksgiving, called us, and arranged to see us the following Tuesday. He is amazing doc, and one we are willing to wait 3 hours to see -- see story below). Max got his last lumbar tap on Thanksgiving day last year; he was still having breathing problems with regular desats, apnea episodes, and heart rate fluctuations; and his reflux would not be evident until a month from now. It is truly amazing how far Max has come. He is one tough kid.
Of course Max's days of medical management, feeding challenges, and therapies continue. Here's an update on his various fronts:
* Hydrocephalus. Max had a CT scan and saw the neurosurgeon Dr. K on Nov. 16. We were at Children's Hospital from 9 am until 2 pm. Long day, but Max handled it like a champ (sleeping for 1.5 hours on my shoulder). The CT showed that his ventricles are stable but still "generous" in Dr. K's words. Max's head is growing and still much larger than kids his age, but his growth in on his own concave trajectory which is expected. Max was throwing the ball around the exam room while Dr. K ran after it. A good time was had by all, and Dr. K said that he would not recommend putting in a shunt at this point. We return to Dr. K in 6 months for another CT and checkup (or before if any signs of pressure appear).
* NG Tube / feeding / weight gain. Max is still fed through the NG tube while he sleeps at night. During the day, he eats pureed food by spoon, little puffs (which he is learning to pick up with his fingers), and formula from the bottle. At a single "meal," he might eat just 1/3 to 1/2 of a jar of baby food, but he does so willingly and we just stop when he turns away. His oral intake of formula from the bottle is anywhere from 200-350 cc per day. His reflux seems to be gone or very well under control, though every once in a while he does have emesis. We think this is from choking on his tube, but maybe the reflux is still a factor. But for now at least, it looks like Max will avoid the fundoplication surgery (where the stomach is tied around the esophagus to stop the reflux).
So Max has shown that he CAN eat by mouth. Why does he still have the NG tube? Well, he's had it for over a year now and his body has become accustomed to it. Why eat by mouth when you can have it delivered directly? We can't just pull it out and let him go hungry for long periods of time because of his nutritional needs for physical and cognitive growth (the GI doc says that studies show it takes monkeys about 2 weeks to develop a normal hunger-eating cycle).
The GI team has given us a plan to wean Max very slowly from the NG tube. If this works, he can avoid getting a stomach tube (G-tube) for feeding. If the process stalls and it looks like the NG tube needs to come out for breathing or speech purposes, then at some point Max may still need a G-tube.
Here's the plan: Max gets weighed every 2 weeks, and if he gains 5 ounces, then we cut back 2 ounces from his nighttime tube feedings. The hope is that he will slowly pick up the slack during the day. We rented a home scale so we can always measure him on the same scale and don't have to take him to a doctor's office just to get weighed. So far, over about a month, Max gained 13 ounces in the first 2 weeks; then 5 ounces in the second 2 weeks. That makes his current nighttime volume through the NG tube 360 cc (or about 12 ounces).
And for the record, Max now weighs 19 lbs 8 ounces, and is 29 inches long.
* Sleeping. Because Max still gets fed through the NG tube at night, he still has to sleep in his crib, on a 30 degree incline, on his stomach, in the Tucker sling while the feed is running. He typically wakes up around 4 or 5 a.m. and wants to move around, but can't because he's strapped in the sling. Because his feed is now ending around 3:30 or 4 a.m., he doesn't need to be in the sling all night. So when he wakes up, we move him to his Pack & Play to sleep for the rest of the night. He seems to like this because he can move around and get comfortable. Instead of waking up for the day at 6 am, he is now sleeping until 7 or even 8 am! This is good, because if he really wants to be part of our family, he CANNOT be an early riser.
* Medicines. Max is now on 4 medicines, delivered at 4 humane times of the day (7 a.m., 3 p.m., bedtime, and 11 p.m.). We recently changed dosages and timing to eliminate the 2 a.m. medicine. Andreas is very happy! Current meds are: Prevacid (for reflux); Erythromycin (an antibiotic which at low doses is used for motility); Culturelle (a probiotic that keeps good bacteria in his stomach); and a multivitamin with iron. As of late September, the pulmonary docs said Max did not need his diuretic (Aldactazide) any more.
* Therapies. Max is getting speech therapy (for eating) once every 3 weeks, physical therapy once every 2 weeks, and occupational therapy once every 1-2 weeks. And of course Doris therapy every weekday.
* Vaccines. Max was on top of the list for the H1N1 vaccine. In fact, we all got a dose back in early October when the vaccines were first available, thanks to Max's high-risk status. At his 1-year physical a few days ago, Max got his second dose of the H1N1 vaccine, his second dose of the seasonal flu vaccine, and his vaccines for DTaP, polio, and something else. I thought we might be in for a miserable weekend, but he seems to have shaken all those vaccines off. Let's keep our fingers crossed.
* Synagis. Max was also approved by our insurance company for a cycle of Synagis this year. It is a monthly shot of antibodies, delivered October through April, to protect against respiratory syncytial virus (RSV). Each shot is pretty expensive, and we are relieved that our insurance is covering this.
That's it for the medical roundup. Keep watching for other more exciting Max updates.
Sunday, November 1, 2009
Sunday, October 25, 2009
Birthday montage
A video montage of the highlights of Max's first birthday.
Max's First Birthday from Codered Summer on Vimeo.
Saturday, October 24, 2009
Birthday boy
Here's a pic of Max with his latest hobby: playing with (and chewing on) the refrigerator letters. How germy could they be, really?
Today is Max and Ada's birthday. This time of year, especially this day, is filled with mixed emotions. We celebrate the progress Max has made over his first year and hope for his continued improvement and happiness. At the same time our hearts ache for Ada, the life she never knew, and our lives without her.
Today is Max and Ada's birthday. This time of year, especially this day, is filled with mixed emotions. We celebrate the progress Max has made over his first year and hope for his continued improvement and happiness. At the same time our hearts ache for Ada, the life she never knew, and our lives without her.
Wednesday, October 14, 2009
Max practices eating
As Carolyn explained yesterday, we plan to slowly step down the amount of food delivered to Max overnight and attempt to make it up with increased feedings of calorie-rich formula during the day. The ultimate goal is for Max to say good-bye to his feeding tube without requiring surgery to place a semi-permanent g-tube. In effect, one day in the next couple of months we envision pulling out Max's ng tube and simply not replacing it. (PS Did everyone get Carolyn's allusion to Robert Graves?)
However, year-old babies like Max don't live by bottle feedings alone. After all, he's got to put those sharp little teeth to good use. In the video below, a secret camera records Max's attempts to get down some very small crumbs of teething biscuits. He's clearly interested and working hard to get his fingers to cooperate: picking up the crumb and guiding it to his mouth is harder than you might expect. Why then does Max feel the need to transfer the precious crumb from one hand to the other? Practice? (Link to video here in case the embedded player doesn't work for you.)
However, year-old babies like Max don't live by bottle feedings alone. After all, he's got to put those sharp little teeth to good use. In the video below, a secret camera records Max's attempts to get down some very small crumbs of teething biscuits. He's clearly interested and working hard to get his fingers to cooperate: picking up the crumb and guiding it to his mouth is harder than you might expect. Why then does Max feel the need to transfer the precious crumb from one hand to the other? Practice? (Link to video here in case the embedded player doesn't work for you.)
Max Eating from Codered Summer on Vimeo.
Monday, October 12, 2009
Goodbye to all that
We're not sure, but we think Max waved. At dinner tonight, Felix was waving and greeting each of us. When Felix yelled "HELLO MAX" and waved to him, Max lifted his arm and made a waving/flailing motion. Of course we tested him a couple more times. And we'll retest tomorrow. This corresponds with a couple of nights of Max not sleeping very well. Our hypotheses are: (1) developmental leap; (2) sugar (he tasted some icing on a cupcake, on the sly); (3) separation anxiety (he gets really irritated if we walk out of the room).
Max seems to be over his ear infection and has been pretty happy this past week. We are tweaking the nighttime feeds, reducing the amount by about 2 ounces (so now he gets about 16 ounces, or 480 ml, through the pump at night), and we're transitioning to all formula. The hope is that he will make it up in PO during the day. Next weight check: Monday 10/26. Maybe Max will be able to wave goodbye to the pump in the next couple of months.
Max seems to be over his ear infection and has been pretty happy this past week. We are tweaking the nighttime feeds, reducing the amount by about 2 ounces (so now he gets about 16 ounces, or 480 ml, through the pump at night), and we're transitioning to all formula. The hope is that he will make it up in PO during the day. Next weight check: Monday 10/26. Maybe Max will be able to wave goodbye to the pump in the next couple of months.
Monday, October 5, 2009
All ears
About a week ago, Max started exhibiting some new behaviors -- whacking himself on the left side of the head, not sleeping well, hating diaper changes, and to top it all off--running a fever starting on Wednesday morning. We took him to the pediatrician, who diagnosed an ear infection and put him on a 10-day course of an antibiotic (Amoxicillin). Max continued to have fever and a rough couple of days when he was cranky and just not his sunny, active self. On Sunday, his chest and back were covered in spots. Today, we took him back to the pediatrician, who determined that Max is allergic to the Amoxicillin, and put him on a 3-day course of an alternative (Zithromax). His ear infection is looking better but still with him. Max is already showing signs of returning to a happier state.
As soon as the ear infection is beat back, we have a plan (with the blessing of the GI docs) to cut back Max's nighttime feeds and see what he can take by mouth during the day. We don't want to try this while he's not feeling well. We have an appointment with the GI clinic at the end of this month to report in.
In other news, Max was just approved for a Medicaid waiver (the Elderly or Disabled with Consumer Direction, or EDCD waiver). This is typically for older people, but the local Early Intervention staff told us that Max might be eligible and helped us figure out how to apply. This will allow us to use a nursing agency to provide nighttime respite care. We're still figuring out exactly what the parameters of the program are.
This afternoon, Max slept from 3-6 p.m. That meant he didn't go to bed for the night until almost 8 p.m. And THAT meant that the four of us got to have dinner together and play together in the sunroom tonight. And that was really nice.
As soon as the ear infection is beat back, we have a plan (with the blessing of the GI docs) to cut back Max's nighttime feeds and see what he can take by mouth during the day. We don't want to try this while he's not feeling well. We have an appointment with the GI clinic at the end of this month to report in.
In other news, Max was just approved for a Medicaid waiver (the Elderly or Disabled with Consumer Direction, or EDCD waiver). This is typically for older people, but the local Early Intervention staff told us that Max might be eligible and helped us figure out how to apply. This will allow us to use a nursing agency to provide nighttime respite care. We're still figuring out exactly what the parameters of the program are.
This afternoon, Max slept from 3-6 p.m. That meant he didn't go to bed for the night until almost 8 p.m. And THAT meant that the four of us got to have dinner together and play together in the sunroom tonight. And that was really nice.
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