While we were at a co-treat of PT and OT this week, AJ's PT asked what I've been seeing with AJ. I noted difficulty walking, tripping over his feet, dragging, and trying to walk to fast.
It is a darn good thing we got the botox in his calf.
Why is it good?
AJ's growing. He has been since he got the botox a month ago. He always grows "up" before "out", so I can always tell when I'm rolling the waist of his pants and shorts, as he loses what little hips and tush he has. He usually grows slowly, which aggrivates his GI doctor but pleases both us and his PT, since it causes him less pain. (His muscles do not stretch at the same rate his bones do, thus, PAIN). But this time around, he's growing faster. Faster than his normal pace.
If he hadn't had the botox he would have lost the mobility to walk.
The funny thing? I shrugged it off. Me! I shrugged it off. One because I was patting myself on the back for stopping my freak out over the botox and just went for it. Two, because he had the botox, so we were lucky, and we can work with the challenges his growth spurt is causing. Three, because his PT walks on water with me and I know she would never let that happen permanently. The growing does hinder us to see how well, exactly, the botox has worked, but if its kept him mobile. t
Which brings me to the curve.
AJ's spine is changing. If left untreated, he could have curvature of the spine. His PT said "He WILL NOT have a curve in his spine, I WILL NOT allow it." When she says those things (like HE WILL WALK) I know we'll be given the tools for preventing curvature and go forward. She had to show me the change a few times before I saw it.
This did scared me, more than the walking thing. But, his PT showed me some funky back stretches to do with him, mandated massaging twice a day (which she has never ever done, she never gives me reps or whatever), and mandated Jer wrestling with him and bouncing him around with "enthusiasm". Somehow I don't think the last two instructions will be that difficult to make happen. Anything we can do to keep him loose and stretched out is now on our agenda.
AJ hasn't been drinking his Kid Essentials. He's actually been drinking water. Plain.Straight.Agua. This is nothing short of a miracle. That I had nothing to do with. After finding out that AJ did drink white milk a few times at school last year, I thought it was time to make the change. He's eating enough in his daily diet to feed a horse, or heck, maybe the whole farm. I think the "let's drink something icky and sweet multiple times a day got to him. AND, its horrible for his already weak teeth.
So, I checked with our GI dietician and gave her my plan of attack: whole milk with 2 TSBP Duocal mixed in, with a daily vitamin. Much to my surprise, we got the all clear. In case you wanted to know, whole milk is 150 cal per 8oz, each TBSP of Ducoal is 42 cal. While we didn't reach this goal due to AJ gaining a huge amount of weight (we wish!), nonetheless, we are thrilled we no longer have to hunt for KE and can save a whole lot of money.
Showing posts with label GI. Show all posts
Showing posts with label GI. Show all posts
Friday, September 10, 2010
Wednesday, April 7, 2010
Jackpot
I found this little beauty last night:
Check this out:
I hit the jackpot for pre-packed high calorie foods for AJ. Children with cerebral burn twice as many calories as the typical child. AJ is still on an extremely high calorie diet.To the point where his GI has literally told us not to worry about fruits and vegetables. I worried about sodium content, he was not. If we fed him McDonalds and Culvers every meal, every day, they would be thrilled. Jeremy and I, not so much. With Jeremy being a RN, CDE, everything we feed AJ kinda goes against what he teaches. We could write a how-to book, which would feed (no pun intended) the current problems with childhood obesity. What you shouldn't feed your kids, we are required to feed our kid.
I am often the "crazy lady" in the store who exclaims, "Ugh! Thats not enough calories!!" I've gotten some pretty weird stares with that one. When I found the meal above, I cheered. Again, some pretty weird stares. I came home and played show and tell right away. What's even more sad is that my Mom and Jer celebrated with me when I showed them the package. He ate the whole thing for lunch today. 720 calories, down the hatch.
He also drinks chocolate milk and apple juice. AJ's dentist continues to be concerned about his lack of fluoride (it is not in our water), so we are now making frozen 100% apple juice concentrate with the baby water that has fluoride added. I also water down the juice quite a bit by adding more water than the traditional 3 cans. AJ has never been a water drinker. Sigh.
His dentist is still contemplating fluoride drops for AJ. Why is fluoride important? Why should you not have too much fluoride? In the meantime, we use the fluoride water for his juice and give him foods rich in fluoride, like broccoli. We also have to have him brush his teeth multiple times a day and rinse his mouth everytime he drinks his Kid Essentials or juice, as he has weak teeth.
AJ has the typical routine of a toddler, where they eat like crazy and then the next day they may eat like a bird. This used to drive us absolutely insane. When you have a child who has failure to thrive, your child not eating is not an option. It never fails, even if it goes for 2 days or so, he'll bounce back and eat like a horse. I do my best to mix in fruits and veggies with whatever he's eating. He loves spinach, and many other things most kids won't eat. So I'm not complaining. He rocks the spinach and artichoke dip from California Pizza Kitchen. I wish they had that in the freezer section at the stores. He does like my recipe, but not as much as CPK.
We try to limit his sweet intake. We've found other ways to get the calories in. Rest assured, we make sure he gets his fair share of ice cream, cookies and cake. Jeremy and I both grew up loving fruits and vegetables and always joked that we'd feed our child uber healthy. Guess that didn't work out.
Other than the Kid Essentials, I do not buy any calorie supplements, powders, etc. My weapon of choice is vegetable oil. I add vegetable oil to his yogurt, oatmeal, mashed potatoes, pudding. Anything I can successfully mix it in to. There is no taste (I've tasted it in his foods before). The variety of foods AJ eats is incredible. He no longer gets stuck in a pattern of only wanting chicken nuggets or craisins.
I've also learned to just let him eat. and not to stress over it so much. He's gone from 13 lbs to 25 lbs in almost 3 years. While he is still tiny, (25 lbs 34in tall at almost 4), he's come a long way. I can usually count on someone in his school stopping me and saying, "He's so cute! And tiny! How old is he?" "Almost 4." "Oh." (followed by uncomfortable silence) Another example of my "Oh Factor". Te-He. AJ has all of a sudden started gaining weight at a phenomonal pace. Who knows what suddenly triggered this growth. His GI continues to be happy with his progress, and that's all I'm really worried about.
Oh, and I'm sure Boston Market will have no problem with me buying out my local store's stock of frozen meals.
Sunday, October 11, 2009
Relief
Well...we are officially a no-nap household. I'm not sure I expected it to happen this fast. Then again, AJ is almost 3 1/2. While it has made our days seem very, very long, it is a relief to put AJ to be at 7pm and know that he is going to sleep. No more busy-body activity in our bedroom before we go to sleep. We've had a few days here and there where he's fallen asleep in the early afternoon. On those days, we watch the length of time he naps very closely.
AJ going to bed early has given us a chance to unwind and can you believe this: talk. HA! Talking one-on-one without a 3 year old trying to spoon an entire bowl of pudding into his mouth is much more productive. It also helps that I'm not trying to stay awake late at night with toothpicks holding up my eyelids.
Here's a run down on the latest:
PT: After a big mix-up, we finally have 2 AFOs, not 1! They came in the mail (weird) and insert panic when I put them on...and they did not fit into his shoes. One phone call to his PT later, panic mode ceased. Bottom line, I need to put him in bigger shoes. They should actually help his balance even more (I was imagining him walking around in clown shoes). We'll try them for a few weeks and if it really isn't working, I'll have to take him back to his orthotist to have them trimmed. We don't want to trim too much, as they are molded a bit longer to allow for growth. We don't need to be getting him new AFOs every 6 months due to growth. This is the age where he "should" have a growth spurt, so we'll see. He also received his de-rotation straps. Ugh. They are going to be quite the challenge and I don't like them-AT ALL. That's all I'm going to say for now.
His PT hasn't seen him in a few weeks, (even though we've had PT with other staff at the clinic) so I was very pleased when she was so impressed with him last week. His left leg has been MEGA tight the last few weeks, and he was nice and loose for her. She complimented me on working it out. That felt good. I did mention his left foot is really tight, and she agreed. We are to continue our foot exercises and she added a new one that makes him giggle. Thank God he's ok with exercises, it would really suck if he wasn't. We need to watch his foot so that he does not become a toe walker. While we were just watching AJ walk around the other day, another Mom told me that all she sees is AJ-perhaps a bit unbalanced-but just AJ-and I see the foot turning in, the this, the that. It is true. While I'm not obsessive about it, I keep on top of it. AJ's team has trained us well. I knew God gave me the memory of an elephant for something....
OT: AJ received his left hand split two weeks ago. He tolerates it just fine. He'a already swirled it around the toilet water, so its nice and broken in. And washable, by the way. The splint is soft and keeps his thumb out. It also has a metal stint that keeps his left wrist from curving down. He's really at a point where we hemmed and hawed with his OT has to whether he'd need it by the time he got it, but it is helping. His wrist plays games with us. Some days it acts up, others it doesn't.
AJ continues to make gains in fine motor skills. He's been introduced to a swinging bolster at his therapy clinic. He's holding on to the rope and providing himself stability very well. He also painted with pudding with both his hands and feet last week.
GI: Jeremy and I want to rule out a tapeworm. Somehow, and don't ask me how, AJ was never tested for parasites by the GI Clinic. We know he was tested by our pediatrician when he came home (results: negative), but why the #($%*% didn't the GI Clinic test him? Anyhow, Jer's had his feelers out at work (sometimes it pays to work with lots and lots of doctors) which has revealed that not only should he have been tested, the test should have been repeated 3 times. Fantastic.
Needless to say, we have the collection kit and will get it to the lab this week. This kid is eating like a horse. Now, he may just be a super-burn-lots-of-calories-CP-kid. But we won't stop until we get a freakin' answer. My favorite part of this is when I called to inquire about testing for a tapeworm and was informed we didn't test for parasites period, I asked why, and received the response. "He doesn't have the symptoms." Well, my kid didn't seem to "display" symptoms of a child with CP or DEAF when he came home, now did he?! Don't give me the symptoms crap.
On the bright side, we went in for another terrifying weigh-in last week, AJ gained a full pound. This is great news! His height is the same 2'9". I haven't heard from his GI doctor yet as to when he wants to see him again. For now, we're safe.
Eyes: AJ had a follow-up appointment last week, with full dilation. He had a fantastic day. He was comfortable in the doctors office, in the room he walked around and explored. I've never seen him do that. He sat on my lap, responded to her "clicking" sounds she made with her mouth to direct his attention to her light. That activity just astounds me. I don't know why.
He did great in the waiting room while we were waiting for his eyes to dilate. He noticed the other kids. I observed sisters with their two kids while waiting, they were nice, but were starring at AJ like no tomorrow. Just ask me, I don't care. Ask me, I'll tell you. They left and another mom came in, with a son who had Down Syndrome...and had hearing aids. He was adorable. She was filling a large syringe with water and was administering it (g-tube) while he was on the rocking horse. We smiled at each other, encouraged our boys to say hello, and I just felt, at home. She didn't even see AJ's CI. But there was a comfort there that I wish I felt with those other parents. Hm.
AJ has never wanted to go into the toy corner. He always stays by the patio doors (condo building made into offices). I guided him toward the toys and he found the puzzles right away. We sat on the floor and played with the puzzles and then with the rocking horse...on which he discovered he could rock himself back and forth. When he was done, it was our turn, and he again was a champ for his eye doctor.
He needs glasses. Its only a small perscription due to his astigmatism, but its mostly to help him focus. Hopefully this week I'll get over to Jer's work to order those. AJ's been picking up the most tiny things off the floor. How that's not focusing, I don't know.
CI: We had AJ's 6-month post activation audiogram last week. He tested at 25db. Which totally floored me. My deaf son, who heard at 110db+, can now hear ABOVE the speech banana. Amazing. AJ sat like a big boy in my lap (which he's never done) and tested really well. We've had AJ wearing the BTE (behind-the-ear) set-up for about two weeks, thanks to Peas' Mom encouraging me to take that leap. We love it and AJ's audiologist was also very excited with this change. He's making continued progress and even had 6-8 more gains on this checklist we complete at each visit. The next step is to get AJ vocalizing more. More and differently. Let's see some consonant and vowel sounds, lets do some ma-ma-ma, let's use our voice when we want something, let's respond physically to music. Those sorts of things.
AJ's eye contact/eye gaze continues to improve as well. This is a major gain. While at his appointment, we also had the pleasure of meeting the new audiologist that joined our CI program. She was very pleased with AJ's gains in just 6 months. She also told us that Lowell's program is one of the best in the country. For Tammy and Tina, she compared it to River School. YAY!!!
On a very sad note, we found out AJ's ENT/CI Surgeon is leaving. I can't even tell you how this upsets me. He will be missed, but we are in good hands from here on out. Portland, Oregon: You better appreciate this great man!
Feeding: AJ's struggling with his head position during eating. Per suggestion of his SLP at CHW, we are doing a swallow study to "rule things out." We all think his action is a compensatory strategy AJ's uses to help gravity aid his food going down. But, we want to be sure. Basically, he gets to eat in the x-ray room in a special box-like chair. We need to put barium (unflavored) on his food and they will take pictures while he eats. The swallow study may help us gain more PA (prior-authorizations) from insurance to allow more feeding therapy. Even if we only check in once a month, I think it will make the whole team (us, CHW, and his school) feel more comfortable. He has made great strides with chewing his food though!
CP: After his eye exam, I took AJ to have his baseline x-rays done. The CP doctor (filling in for his regular doctor) we saw in July ordered them. Kids with CP are are risk for scoliosis, as well as many other things. Now that AJ is 3, they wanted to take baseline x-rays of his back and pelvis to have a starting point to refer back to as his grows. I was very leary as to how he would do. He did FANTASTIC. Seriously, fantastic. Another example of how he's really tuning into his world. He did have his CI off, which amazed me even more. I have no worries about the swallow study being done. He did so well with the baseline, and for the next one he gets to eat? Easy. We have not received the results of the baseline x-rays yet.
School: The representative from our home school district did come and observe AJ and the program as a whole last Thursday. I guess it went well, as she stayed over an hour and I received a message later in the day saying what a great program Lowell has and that we'll meet again in November. A bit of relief there.
AJ continues to do incredibly well in school. He did have one rough day last week where he came out screaming bloody murder (and none of us know what that was about). Overall, he is just amazing us. It is THE COOLEST thing on the planet to have him come home and JUST DO A SKILL. Like, hey, no problem. And he does it with this look, like "Whats next Mom/Dad." Too funny. AJ's teacher and I do a lot of emailing back and forth. We are so grateful that she takes the time to care about all of AJ's needs.
House: Jeremy and I have never been good at asking for help. When AJ came...and then his issues were surfaced...we got even worse. To be honest, I think a lot of that came from people's reactions to AJ's special needs and the "let me know if you need anything" generic comment that never turns into anything because their own lives continue, they forget, or don't have time. While we certainly didn't expect, we were let down. I think too that we ended up building a wall, since we got so used to not being able to depend on others. I may sound judgemental, and for right now, I'm ok with that. There was a time I had no sympathy for the normal/typical/average Mom who complained about everything that had to do with their normal child. I had no sympathy for someone who wasn't running their child around town to doctors appointments and therapists. I've gotten much better, although there is always room for improvement. Bottomline: We learned to deal. Just the facts jack.
Very kind friends of ours have offered their help with helping us get the house ready. I cried when I read their email. It was the answer to a prayer I had been repeating for a long time. Relief. I've started on all those to-do lists, and hopefully, we'll start to see some progress. To our friends, you know who you are...thank you.
So, tonight, I'm feeling a bit of relief. It's a nice change of pace.
AJ going to bed early has given us a chance to unwind and can you believe this: talk. HA! Talking one-on-one without a 3 year old trying to spoon an entire bowl of pudding into his mouth is much more productive. It also helps that I'm not trying to stay awake late at night with toothpicks holding up my eyelids.
Here's a run down on the latest:
PT: After a big mix-up, we finally have 2 AFOs, not 1! They came in the mail (weird) and insert panic when I put them on...and they did not fit into his shoes. One phone call to his PT later, panic mode ceased. Bottom line, I need to put him in bigger shoes. They should actually help his balance even more (I was imagining him walking around in clown shoes). We'll try them for a few weeks and if it really isn't working, I'll have to take him back to his orthotist to have them trimmed. We don't want to trim too much, as they are molded a bit longer to allow for growth. We don't need to be getting him new AFOs every 6 months due to growth. This is the age where he "should" have a growth spurt, so we'll see. He also received his de-rotation straps. Ugh. They are going to be quite the challenge and I don't like them-AT ALL. That's all I'm going to say for now.
His PT hasn't seen him in a few weeks, (even though we've had PT with other staff at the clinic) so I was very pleased when she was so impressed with him last week. His left leg has been MEGA tight the last few weeks, and he was nice and loose for her. She complimented me on working it out. That felt good. I did mention his left foot is really tight, and she agreed. We are to continue our foot exercises and she added a new one that makes him giggle. Thank God he's ok with exercises, it would really suck if he wasn't. We need to watch his foot so that he does not become a toe walker. While we were just watching AJ walk around the other day, another Mom told me that all she sees is AJ-perhaps a bit unbalanced-but just AJ-and I see the foot turning in, the this, the that. It is true. While I'm not obsessive about it, I keep on top of it. AJ's team has trained us well. I knew God gave me the memory of an elephant for something....
OT: AJ received his left hand split two weeks ago. He tolerates it just fine. He'a already swirled it around the toilet water, so its nice and broken in. And washable, by the way. The splint is soft and keeps his thumb out. It also has a metal stint that keeps his left wrist from curving down. He's really at a point where we hemmed and hawed with his OT has to whether he'd need it by the time he got it, but it is helping. His wrist plays games with us. Some days it acts up, others it doesn't.
AJ continues to make gains in fine motor skills. He's been introduced to a swinging bolster at his therapy clinic. He's holding on to the rope and providing himself stability very well. He also painted with pudding with both his hands and feet last week.
GI: Jeremy and I want to rule out a tapeworm. Somehow, and don't ask me how, AJ was never tested for parasites by the GI Clinic. We know he was tested by our pediatrician when he came home (results: negative), but why the #($%*% didn't the GI Clinic test him? Anyhow, Jer's had his feelers out at work (sometimes it pays to work with lots and lots of doctors) which has revealed that not only should he have been tested, the test should have been repeated 3 times. Fantastic.
Needless to say, we have the collection kit and will get it to the lab this week. This kid is eating like a horse. Now, he may just be a super-burn-lots-of-calories-CP-kid. But we won't stop until we get a freakin' answer. My favorite part of this is when I called to inquire about testing for a tapeworm and was informed we didn't test for parasites period, I asked why, and received the response. "He doesn't have the symptoms." Well, my kid didn't seem to "display" symptoms of a child with CP or DEAF when he came home, now did he?! Don't give me the symptoms crap.
On the bright side, we went in for another terrifying weigh-in last week, AJ gained a full pound. This is great news! His height is the same 2'9". I haven't heard from his GI doctor yet as to when he wants to see him again. For now, we're safe.
Eyes: AJ had a follow-up appointment last week, with full dilation. He had a fantastic day. He was comfortable in the doctors office, in the room he walked around and explored. I've never seen him do that. He sat on my lap, responded to her "clicking" sounds she made with her mouth to direct his attention to her light. That activity just astounds me. I don't know why.
He did great in the waiting room while we were waiting for his eyes to dilate. He noticed the other kids. I observed sisters with their two kids while waiting, they were nice, but were starring at AJ like no tomorrow. Just ask me, I don't care. Ask me, I'll tell you. They left and another mom came in, with a son who had Down Syndrome...and had hearing aids. He was adorable. She was filling a large syringe with water and was administering it (g-tube) while he was on the rocking horse. We smiled at each other, encouraged our boys to say hello, and I just felt, at home. She didn't even see AJ's CI. But there was a comfort there that I wish I felt with those other parents. Hm.
AJ has never wanted to go into the toy corner. He always stays by the patio doors (condo building made into offices). I guided him toward the toys and he found the puzzles right away. We sat on the floor and played with the puzzles and then with the rocking horse...on which he discovered he could rock himself back and forth. When he was done, it was our turn, and he again was a champ for his eye doctor.
He needs glasses. Its only a small perscription due to his astigmatism, but its mostly to help him focus. Hopefully this week I'll get over to Jer's work to order those. AJ's been picking up the most tiny things off the floor. How that's not focusing, I don't know.
CI: We had AJ's 6-month post activation audiogram last week. He tested at 25db. Which totally floored me. My deaf son, who heard at 110db+, can now hear ABOVE the speech banana. Amazing. AJ sat like a big boy in my lap (which he's never done) and tested really well. We've had AJ wearing the BTE (behind-the-ear) set-up for about two weeks, thanks to Peas' Mom encouraging me to take that leap. We love it and AJ's audiologist was also very excited with this change. He's making continued progress and even had 6-8 more gains on this checklist we complete at each visit. The next step is to get AJ vocalizing more. More and differently. Let's see some consonant and vowel sounds, lets do some ma-ma-ma, let's use our voice when we want something, let's respond physically to music. Those sorts of things.
AJ's eye contact/eye gaze continues to improve as well. This is a major gain. While at his appointment, we also had the pleasure of meeting the new audiologist that joined our CI program. She was very pleased with AJ's gains in just 6 months. She also told us that Lowell's program is one of the best in the country. For Tammy and Tina, she compared it to River School. YAY!!!
On a very sad note, we found out AJ's ENT/CI Surgeon is leaving. I can't even tell you how this upsets me. He will be missed, but we are in good hands from here on out. Portland, Oregon: You better appreciate this great man!
Feeding: AJ's struggling with his head position during eating. Per suggestion of his SLP at CHW, we are doing a swallow study to "rule things out." We all think his action is a compensatory strategy AJ's uses to help gravity aid his food going down. But, we want to be sure. Basically, he gets to eat in the x-ray room in a special box-like chair. We need to put barium (unflavored) on his food and they will take pictures while he eats. The swallow study may help us gain more PA (prior-authorizations) from insurance to allow more feeding therapy. Even if we only check in once a month, I think it will make the whole team (us, CHW, and his school) feel more comfortable. He has made great strides with chewing his food though!
CP: After his eye exam, I took AJ to have his baseline x-rays done. The CP doctor (filling in for his regular doctor) we saw in July ordered them. Kids with CP are are risk for scoliosis, as well as many other things. Now that AJ is 3, they wanted to take baseline x-rays of his back and pelvis to have a starting point to refer back to as his grows. I was very leary as to how he would do. He did FANTASTIC. Seriously, fantastic. Another example of how he's really tuning into his world. He did have his CI off, which amazed me even more. I have no worries about the swallow study being done. He did so well with the baseline, and for the next one he gets to eat? Easy. We have not received the results of the baseline x-rays yet.
School: The representative from our home school district did come and observe AJ and the program as a whole last Thursday. I guess it went well, as she stayed over an hour and I received a message later in the day saying what a great program Lowell has and that we'll meet again in November. A bit of relief there.
AJ continues to do incredibly well in school. He did have one rough day last week where he came out screaming bloody murder (and none of us know what that was about). Overall, he is just amazing us. It is THE COOLEST thing on the planet to have him come home and JUST DO A SKILL. Like, hey, no problem. And he does it with this look, like "Whats next Mom/Dad." Too funny. AJ's teacher and I do a lot of emailing back and forth. We are so grateful that she takes the time to care about all of AJ's needs.
House: Jeremy and I have never been good at asking for help. When AJ came...and then his issues were surfaced...we got even worse. To be honest, I think a lot of that came from people's reactions to AJ's special needs and the "let me know if you need anything" generic comment that never turns into anything because their own lives continue, they forget, or don't have time. While we certainly didn't expect, we were let down. I think too that we ended up building a wall, since we got so used to not being able to depend on others. I may sound judgemental, and for right now, I'm ok with that. There was a time I had no sympathy for the normal/typical/average Mom who complained about everything that had to do with their normal child. I had no sympathy for someone who wasn't running their child around town to doctors appointments and therapists. I've gotten much better, although there is always room for improvement. Bottomline: We learned to deal. Just the facts jack.
Very kind friends of ours have offered their help with helping us get the house ready. I cried when I read their email. It was the answer to a prayer I had been repeating for a long time. Relief. I've started on all those to-do lists, and hopefully, we'll start to see some progress. To our friends, you know who you are...thank you.
So, tonight, I'm feeling a bit of relief. It's a nice change of pace.
Tuesday, April 21, 2009
Weighing in at a very exciting 21 POUNDS...
AJ had another weight check at the GI Clinic today. We were hoping for at least 20 pounds, that has been our goal for a very long time. On surgery day he was 19lbs 15oz, only 1oz away from 20 pounds.
Today, he weighed in at a whopping 21 POUNDS even!! WHOO HOO!!!!!!
Wednesday, February 18, 2009
19 and Holding
Yesterday was a very scary day.
AJ has not gained weight in the last six months. He weighed in at 19lbs 8oz in October 2008...and was the same yesterday. 19 lbs 8oz at 32 months old.
As I stood next to the scale AJ was on, with my camera ready, sure that he was at least 20lbs even, my heart sank, shock set in, and fear consumed me.
His GI doctor is very, very concerned. Last October, he created AJ his own personal growth chart (since he's nowhere near the US growth charts). He was at 86% for his weight vs. height. The GI had said that meant he was slightly malnutritioned, but that it was ok, we were doing all we could, and that once he bumped up to 90%, he'd be happier.
Yesterday, he was at 83%, 3% LOWER.
It is EXTREMELY scary when your child's doctor can't tell you what is going on and how to fix it. He ordered blood tests and said that we need to basically cut healthy foods out of his diet. Concentrate only calorie rich foods ONLY. We can give him a slice or two of banana, but not a whole one. Food that are hard to "beef up" with calories are out. We are expecting the blood test results today or tomorrow.
There are a "bazillion" reasons as to why this is happening (the GI's words not mine). We are basically on a fishing expedition to see why he's not gaining weight. He has already been tested for parasites, celiac disease, and abnormal calorie absorption (negative). The hardest part for our GI is not knowing when he was born. We were told 4-6 weeks early. After a few months at home and many specialist appointments, its estimated more like 8-10 weeks early. We will never know. We know that he is burning an insane amount of calories since he has CP and is so mobile now, but this kiddo eats A LOT of food when he eats. Where's it all going?
We have a weight check in 2 months. If he does not gain, he wants to put an NG tube down his nose to administer additional calories. Depending on the blood tests results, he may scope him (do an upper GI).
Noooooooooooooooooooooooooooooooooooooooooooooooo. This is not happening. Just when we thought we had gotten way from "tube talk". Yesterday was the first time I cried in front of one of AJ's specialists and his staff. Talk about embarrassing.
AJ's nutritionist came in. Based on her calculations AJ is receiving proper nutrients. She recommended getting a pestle & mortar or a pill crusher to dissolve AJ's complete vitamins into a finer powder than what I can achieve with a butter knife. Jeremy brought home a pill crusher from work last night. Note: Those gummy vitamins they sell for kids now ARE NOT the same as the regular vitamins. The Flinestones (or generic brand) are COMPLETE, the gummies are not.
I asked the nutritionist about foods rich in fiber and that will keep AJ regular. The reason I give him the fruits/veggies etc is mostly to keep him regular. When you are pumping a kid full of calories, some of it can stop them up. We went through a few types of foods and she gave me ideas as to how to "beef" them up with calories. She gave me a few handout on blended foods, high-calorie puddings, and a milk + _______ calorie chart. She also sent us home with a bag of samples. We have Duocal, which is calories in a powdered form. we can use this or oil (as we have been) to beef up foods with calories. She also gave us some different types of high-calories/nutritious drinks for kids (actually made by the maker's of Boost products) and some new flavors of our good 'ol favorite...PEDIASURE.
We left the office and headed down to the lab for AJ's bloodwork. 45 minutes later, I left with a very crabby, hungry little boy.
I'm keeping a log AJ's input/output/total daily liquid intake/total daily calories/wet diapers/soiled diapers.
This morning he ate beautifully at feeding therapy. He chugged, and I mean chugged down the "Banana Cream" Pediasure. I forgot how that stuff smells-ick. But he liked it, so my issues with its smell are null and void. I had to look at my calendar...AJ's been "off" pediasure for over a year now. We had gone to the cheaper alternative (pediasure= $12 for 6 bottles...he was drinking 4/day) Carnation Instant Breakfast with whole milk. He liked the banana cream, he had the vanilla for lunch and has an orange cream to try as well. Whatever WORKS.
His SLP brought up something interesting regarding the NG tube. AJ is such a sensory kid, good luck keeping that in his nose and throat. Will it make him take a step backwards in sensory world? Her other fear is that he will develop an aversion to the tube, and due to that, will develop more aversions to other things. Ugh! I hadn't thought of that. We and his SLP decided that we would cut back his feeding therapy to twice a month...and switch days to accomodate him particpating in the toddler group (more info in a different post). Looks like we made that decision at the right time. Finding an even balance between gaining weight for GI, continuous movement for PT, and trying new foods/biting for feeding therapy feels impossible.
We're a bit calmer today. Maybe its just that he ate well today. His nutritionist did ask me for a recipe that was Jeremy's Grandma's. She had no idea what "Russian Fluff" was when she saw it on AJ's food log. When I shared the ingredients with her, she asked for the recipe, hoping to share it with other families who are looking for "meal" ideas that have bold flavor and lots of calories. I think thats a neat way of Grandma Schmidt feeding other kiddos, in spirit :) I'm hoping to get Uncle Jason over here soon to help convert our hall coat closet into a pantry with shelves etc. I keep AJ's special foods/snacks/supplies in one section of our cabinets. That worked well when he was a baby and ate baby food. Not so much now. Note for the next house: pantry.
Tuesday, January 27, 2009
New Design & GI Plan
So, do we like the new look of the blog?!
Not too much new to report. FYI, we did find banana milk. Of course, 2 days later, he refused to drink it. :)
Although he had a decent day today, AJ's still isn't eating/drinking well. Yesterday (after a morning of tears trying to get him to eat breakfast), I broke down and called his nutritionist at the GI clinic.
She called me back in the evening and we discussed AJ's sudden aversions to eating and drinking. We came to the conclusion that maybe he's not doing as bad as we think he is. Here are a few more things that we chatted about:
* I will keep a detailed, calorie specific input/output log of what AJ is eating, drinking, etc. for the next week. (I created a chart for each day -I'll post a picture soon). Next Monday, I will fax the log to her and call to discuss. I was actually thankful for taking math in school today-calculating calorie intake can be tricky. I am also thankful for Jer's Calorie King Book for foods that aren't packaged with nutrition facts.
* We have reduced his calorie intake from 1500/day to 1100-1500/day. Little more breathing room. Whew. When I told her he had eating 560 calories for breakfast the day before (by a miracle), she said he's probably getting full on those big meals. Well, what's a gal to do besides try and get 500 calories per meal in her kid? He's not too much of a snacker.
* 1/2 of any amount of applesauce, jello, ice cream, custard, & ramen noodles counts towards his liquid intake for the day. Example: 4oz of cinnamon applesauce = 2 oz liquid
* I shared several people's suggestions on what else he may like to drink. He loves bold flavors, so....The only drink she agreed with was the V8 Splashers.
* Minimum liquid intake per day: 24 oz Target liquid intake per day: 30 oz
AJ has a follow-up appointment at the GI Clinic in mid-February...I am praying we won't have to go in before that.
Today was a good day for AJ. He only had minor typical-two-year-old tantrums and ate decent. He even drank a substantial amount of liquids. My giggly boy returned and boy-was I glad to see him. We are crossing our fingers that this continues.
Not too much new to report. FYI, we did find banana milk. Of course, 2 days later, he refused to drink it. :)
Although he had a decent day today, AJ's still isn't eating/drinking well. Yesterday (after a morning of tears trying to get him to eat breakfast), I broke down and called his nutritionist at the GI clinic.
She called me back in the evening and we discussed AJ's sudden aversions to eating and drinking. We came to the conclusion that maybe he's not doing as bad as we think he is. Here are a few more things that we chatted about:
* I will keep a detailed, calorie specific input/output log of what AJ is eating, drinking, etc. for the next week. (I created a chart for each day -I'll post a picture soon). Next Monday, I will fax the log to her and call to discuss. I was actually thankful for taking math in school today-calculating calorie intake can be tricky. I am also thankful for Jer's Calorie King Book for foods that aren't packaged with nutrition facts.
* We have reduced his calorie intake from 1500/day to 1100-1500/day. Little more breathing room. Whew. When I told her he had eating 560 calories for breakfast the day before (by a miracle), she said he's probably getting full on those big meals. Well, what's a gal to do besides try and get 500 calories per meal in her kid? He's not too much of a snacker.
* 1/2 of any amount of applesauce, jello, ice cream, custard, & ramen noodles counts towards his liquid intake for the day. Example: 4oz of cinnamon applesauce = 2 oz liquid
* I shared several people's suggestions on what else he may like to drink. He loves bold flavors, so....The only drink she agreed with was the V8 Splashers.
* Minimum liquid intake per day: 24 oz Target liquid intake per day: 30 oz
AJ has a follow-up appointment at the GI Clinic in mid-February...I am praying we won't have to go in before that.
Today was a good day for AJ. He only had minor typical-two-year-old tantrums and ate decent. He even drank a substantial amount of liquids. My giggly boy returned and boy-was I glad to see him. We are crossing our fingers that this continues.
Tuesday, October 7, 2008
86% and then some...
Today AJ had his follow-up with Dr. G, his GI specialist. To say we were nervous and wanted to avoid going are understatements. I was so nervous when he was being weighed I felt sick to my stomach.
Current Weight: 19lbs 7.6oz
Total Gain since 7/9/08: 13.5 oz
As we waited for his specialist in the exam room, little tears began to trickle down my face as I hugged my little man. They soon stopped, as I realized, as I had so many appointments before, that Dr. G may not be happy with his gain.
Current Weight: 19lbs 7.6oz
Total Gain since 7/9/08: 13.5 oz
As we waited for his specialist in the exam room, little tears began to trickle down my face as I hugged my little man. They soon stopped, as I realized, as I had so many appointments before, that Dr. G may not be happy with his gain.
Dr. G said he was happy with the gain. What?! That is the first time I've ever heard that. AJ's birthweight at 3 lbs 8oz was "ok" size for an infant born around 8 weeks premature (that is his estimate). GI sort of gages the growth based a child's birth size/etc when premature. He is content with his progress so far. AJ is 86% of his ideal weight. Meaning, he is considered a tad under-nourished. He was quick to reassure me that it is nothing we are doing wrong, it is just where AJ is. The goal is to get him to 90% of his ideal weight. That is only 4% more than he is now, so that is a very realistic goal that AJ will accomplish naturally as he continues to grow.
Given that we have tested for parasites, abnormal calories absorption, and celiac disease, I was at a loss. What else could be wrong? Over the last few months, AJ's Dad and I kept saying, "AJ's just small." "We've tested for all things possible, he was a premie, he has cerebral palsy, his birthmother was 4'10", Guatemalans are small in general." We had no desire to have an endoscopy done, or upper/lower GIs, and most certainly not a G-tube.
*Note: Children with cerebral palsy burn twice as many calories as a "typical"child does. So while AJ's walking is truly a miracle, as was his crawling, pulling up, etc., in the back of our minds we were seriously worried about how it would affect his weight.
Dr. G said no scope, no GIs, no nothin'. Music to our ears. He's just small and is growing on his own chart. He's closer to the 3% on the normal boys 0-36 month growth chart, but we are not putting too much merit toward that chart, as AJ's chart for his own weight vs. height is what we are focusing on.
We are now able to give him water. What? You weren't giving AJ water? No, we weren't. When we began seeing Dr. G & his staff, we were told not to give him water or juice, as those are "empty calories". AJ has an intake of 1500 calories a day. For a long time, most of his calories were coming from whole milk mixed with carnation instant breakfast (CIB). In the last few months they have added heavy cream to the mix. His pediatrician recent expressed concern about his fluoride intake, so we asked GI if we could give him water. I now need to take a look at our house records to see if there is fluoride in our well. If not, then I'll have to buy the nursery water with added fluoride from the store.
Here is a summary of our care plan:
- 1500 calories/day
- Continue with high-calorie diet (add oil/butter to everything)
- Continue with 1 complete multi-vitamin per day
- Change liquid intake to either 7oz whole milk + 1 oz heavy cream OR
7oz milk + 1 packet CIB 3x/day - Goal of 24-26oz liquid daily
- Give water between meals, avoiding 1/2-1 hour before meals
- Follow-up 3 months
To celebrate that GI is finally accepting his gain, and that we won't be stressing over every bite/meal he eats, I picked up lunch on the way home. I thought only one place was appropriate...McDonalds.
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