Perfect example to reiterate my point.
Andi just flipped over on her contour pillow, underneath the seat belt during a feed, and yanked out her g-tube. The entire thing popped out.
Daddy hadn't yet experienced that, so he reminded me of me on my first experience with it. I however, was totally calm and collected. Asked for items to help me, and when I couldn't spit it out fast enough, ordered Daddy to sit down. Spent 30 seconds saying, 'calm down.' Reminded him that we have 5-6 hours before the hole will close up, and even still, she might need a few stitches to seal her up. He settled and I went to work.
Wow. It wasn't that bad, and I can't believe how at ease I was with it. But then again, having seen it eleven or so times, ... I guess I should be a pro.
So now, I should have little fear with it. Been there. Done that.
4th Birthday Photo Session
Tuesday, May 3, 2011
Feeding Clinic
I haven't posted lately because there really hasn't been anything to update. The entire month of April was spent working on getting Andi to tolerate her g-tube feeds. Since fixing the leak, it was tough to get her to tolerate the volume being pushed on her. We went from 85 ml/hr (with leak) to 90 ml/hr (no leak) with a lot of vomiting 3/4 of the way through. So, we slowed it down and gave her more time to receive & process the volume. She went to 45 ml/hr with a total of 90 ml. So she'd feed for two hours, with a one hour rest, then start feeding again. Too much. Throughout the month, it was puke prevention patrol every feed. Venting when she got fussy, so we can remove the air and make more room for formula. I worked very little on oral feeds, because besides not being hungry, I wanted to really concentrate on getting her feeds tolerated, sped up, increased. We also went from 27 calorie formula, to a 30 calorie formula - by adding Polycose. As of yesterday, she was tolerating a rate of 78/total volume 87. So, she was really taking on more, leaking less, and puking less.
So, today, we went back up to the hospital where their feeding clinic is... and little Bean weighed in at around 13 lbs., 2.2 oz's. Yep, if you recall, that's pretty much the same as where she was two weeks ago. I think she's officially 26" too, as she was finally measured a different, more accurate way. She seems bigger, heavier to us... but...!? Her lyofoam (part of the g-tube gerry-rigging) slipped out last night, so she leaked through her bedding again. I also stopped her nighttime feed at 3:30 a.m., as they wanted her to come to the early morning appointment hungry. Plus, her skin is a bit dryer today, all point to the possibility of her being a bit dehydrated.
Meeting with a whole new team today, I had 11 months of Andi Bean living to regurgitate. I felt partially like a recording, partially like an idiot, and partially like I came across like I think I know too much. It's weird. Here are these highly educated people, and they don't know us, they don't know Andi, and in the course of an hour or two - I have to get them up to speed on someone I've gotten to know these past eleven months, the first five of those she was pretty out of it with ill-health, dope, or hey, the fact that she's an infant? I gave my speech, then new people emerge, and I gave it to them as well. Some more detail, some editing. It was a feeding clinic, so you have the pediatrician, the dietitian, the feeding specialist, and we had a nursing student. My stance is the more people I have looking at Andi, the more input or ideas I can get on how to help her progress.
The dietitian increased us from 30 cal to 33 cal. Our g-tube feeds are now 85 ml (4 x's a day), and 30 ml/300 ml total at night. In addition to that, I need to give her 30 ml (1 ounce) of water or pedialyte 4 x's a day as well, to help with hydration.
The feeding specialist liked Andi's work with her spoon, drinking from the cup and with a straw. It was when Andi got a chunk of solid (cheese puff) in the back of her throat she started to choke, gag and gag, then puked. Her g-tube stuffing got wet from the liquid she drank. Yes, it's a massive eye roll going on over here. They've ordered a swallow study to determine if the thin liquids are a problem for her, as she coughs a bit. She also is supposed to only use the straw until the swallow study, because her head placement is protected, whereas, when she drinks from her nosy-cup, she tilts her head too far back, and opens herself up to the liquid "going down the wrong pipe!" and thus, coughing. So, I've been given a laundry list of things we can work on. The swallow study should be in two weeks, and then she wants to see me back in four weeks. One thing I appreciated that the feeding specialist asked me is what my goal is for Andi. I really dug her opening up that door, because I like to make it clear to everyone and their brother that the g-tube is complete failure for us, and we want it gone as soon as possible.
The pediatrician looked Andi over as well. She was pretty pooped by then, and she really objected to his man-handling. He said a few things that were new and helpful. First of all, his mention of the GJ was immediately shot down. I think I actually dropped a few inappropriate words in my several monologues, nothing too lewd, but, the GJ is just not a viable option for a little girl whom I'm already having trouble keeping still during a regular g-tube feed. Despite a seat belt, she tries to roll over on her contour pillow, even flipping over, plugged into her feed. Or worse, grabbing onto the tubing, as she's becoming more and more aware of it. A GJ tube, if yanked, would require an x-ray to check positioning, and I just have to put my foot down here and say no! The g-tube was supposed to be the perfect option for us, and that is a complete failure that has cost me countless hours of appointments, gazillion loads of laundry, and the piles of insurance co-pays... oh, hell no to upgrading to the GJ. No.
Ooh - so, I totally went off on a tangent. Shocker. I am trying to recall what interesting tidbits he had to offer. He had said that he had worked with a few CHARGE kids before, and that lack of growth was a genetic factor of CHARGE ('G' in CHARGE.) I asked about the growth hormones that I read about on some website, and he said that the growth hormones would only make her grow a couple of inches in height, maybe fill out a little bit, but it would also increase her caloric needs and they usually don't give them to kids under two. Ah, the other interesting contribution was about Andi and her nasal suction machine. When he was handling her and she got pissed, I took her and put her up on my shoulder. I noticed that she was sounding snotty and mentioned it. He said, 'yeah, she's about to leave a bit of it on your shoulder.' I laid her down and got out the dreadful bulb syringe, and held back her arms with one hand, tried to hold her face still with that same hand, and then used the nasty bulb syringe to retrieve the green snot out her nostril. He saw our fight and in discussion, I mentioned that I have a nasal suction machine at home, and it's just as big of a fight to get to use it. He said he had a kid with some sort of nose problem and he just would spray the nose with saline and then put his kid on his stomach and hope that he sneezed it out. The fight with the nose, or anything with the face, can cause more trouble by creating an oral aversion. Their instinct can become to protect the face, whether it's food or suction, or whatever...it's something that we have to be really conscious of... ['Joy! I'll add it to the list!'] But seriously, that was something I may have heard before, but didn't really hear it.
The feeding specialist said by looking at Andi today, her feeding, her physicality, that although she is eleven months old, she is around a 5 - 6 month old. We have some serious catching up to do.
I'm rather surprised by the lack of weight gain. I'm wondering if some of that was dehydration. Looking across the room with her snoozing during her afternoon bolus, I see a little girl on a pillow. She's no longer a little girl though. She's grown so big, only having six inches until she fills the entire contour pillow. Growth has been slow, but if I think back to where she was just a few months ago, it amazes me to see how far she has come.
It'd be even more amazing, I'm sure, had she been getting full feeds all along. I can't even imagine how much stronger she'd be, if she had full nutrition. It makes me mad to go to that dark area of 'what if's' and 'wtf's' and so I don't normally allow myself there. It doesn't do Andi any good. It does however make me stronger when it's time to say 'no!' to something a Dr. suggests, standing firm in my decision. They may be more educated than I, but, I know my little girl and I live this life 24 hours a day, whereas, they just get a glimpse of her in the course of an hour or two.
All that being said, I strongly believe that kids are resilient, and she will go through spurts of growth. Andi's going to be great, super strong, and will advance faster than they say she will. The Dr. said that depending on how the swallow study goes, he believes that Andi might be able to get off the g-tube within six months. As Dr. Mom, given a normal swallow study, my goal is to cut that timeline considerably.
So, today, we went back up to the hospital where their feeding clinic is... and little Bean weighed in at around 13 lbs., 2.2 oz's. Yep, if you recall, that's pretty much the same as where she was two weeks ago. I think she's officially 26" too, as she was finally measured a different, more accurate way. She seems bigger, heavier to us... but...!? Her lyofoam (part of the g-tube gerry-rigging) slipped out last night, so she leaked through her bedding again. I also stopped her nighttime feed at 3:30 a.m., as they wanted her to come to the early morning appointment hungry. Plus, her skin is a bit dryer today, all point to the possibility of her being a bit dehydrated.
Meeting with a whole new team today, I had 11 months of Andi Bean living to regurgitate. I felt partially like a recording, partially like an idiot, and partially like I came across like I think I know too much. It's weird. Here are these highly educated people, and they don't know us, they don't know Andi, and in the course of an hour or two - I have to get them up to speed on someone I've gotten to know these past eleven months, the first five of those she was pretty out of it with ill-health, dope, or hey, the fact that she's an infant? I gave my speech, then new people emerge, and I gave it to them as well. Some more detail, some editing. It was a feeding clinic, so you have the pediatrician, the dietitian, the feeding specialist, and we had a nursing student. My stance is the more people I have looking at Andi, the more input or ideas I can get on how to help her progress.
The dietitian increased us from 30 cal to 33 cal. Our g-tube feeds are now 85 ml (4 x's a day), and 30 ml/300 ml total at night. In addition to that, I need to give her 30 ml (1 ounce) of water or pedialyte 4 x's a day as well, to help with hydration.
The feeding specialist liked Andi's work with her spoon, drinking from the cup and with a straw. It was when Andi got a chunk of solid (cheese puff) in the back of her throat she started to choke, gag and gag, then puked. Her g-tube stuffing got wet from the liquid she drank. Yes, it's a massive eye roll going on over here. They've ordered a swallow study to determine if the thin liquids are a problem for her, as she coughs a bit. She also is supposed to only use the straw until the swallow study, because her head placement is protected, whereas, when she drinks from her nosy-cup, she tilts her head too far back, and opens herself up to the liquid "going down the wrong pipe!" and thus, coughing. So, I've been given a laundry list of things we can work on. The swallow study should be in two weeks, and then she wants to see me back in four weeks. One thing I appreciated that the feeding specialist asked me is what my goal is for Andi. I really dug her opening up that door, because I like to make it clear to everyone and their brother that the g-tube is complete failure for us, and we want it gone as soon as possible.
The pediatrician looked Andi over as well. She was pretty pooped by then, and she really objected to his man-handling. He said a few things that were new and helpful. First of all, his mention of the GJ was immediately shot down. I think I actually dropped a few inappropriate words in my several monologues, nothing too lewd, but, the GJ is just not a viable option for a little girl whom I'm already having trouble keeping still during a regular g-tube feed. Despite a seat belt, she tries to roll over on her contour pillow, even flipping over, plugged into her feed. Or worse, grabbing onto the tubing, as she's becoming more and more aware of it. A GJ tube, if yanked, would require an x-ray to check positioning, and I just have to put my foot down here and say no! The g-tube was supposed to be the perfect option for us, and that is a complete failure that has cost me countless hours of appointments, gazillion loads of laundry, and the piles of insurance co-pays... oh, hell no to upgrading to the GJ. No.
Ooh - so, I totally went off on a tangent. Shocker. I am trying to recall what interesting tidbits he had to offer. He had said that he had worked with a few CHARGE kids before, and that lack of growth was a genetic factor of CHARGE ('G' in CHARGE.) I asked about the growth hormones that I read about on some website, and he said that the growth hormones would only make her grow a couple of inches in height, maybe fill out a little bit, but it would also increase her caloric needs and they usually don't give them to kids under two. Ah, the other interesting contribution was about Andi and her nasal suction machine. When he was handling her and she got pissed, I took her and put her up on my shoulder. I noticed that she was sounding snotty and mentioned it. He said, 'yeah, she's about to leave a bit of it on your shoulder.' I laid her down and got out the dreadful bulb syringe, and held back her arms with one hand, tried to hold her face still with that same hand, and then used the nasty bulb syringe to retrieve the green snot out her nostril. He saw our fight and in discussion, I mentioned that I have a nasal suction machine at home, and it's just as big of a fight to get to use it. He said he had a kid with some sort of nose problem and he just would spray the nose with saline and then put his kid on his stomach and hope that he sneezed it out. The fight with the nose, or anything with the face, can cause more trouble by creating an oral aversion. Their instinct can become to protect the face, whether it's food or suction, or whatever...it's something that we have to be really conscious of... ['Joy! I'll add it to the list!'] But seriously, that was something I may have heard before, but didn't really hear it.
The feeding specialist said by looking at Andi today, her feeding, her physicality, that although she is eleven months old, she is around a 5 - 6 month old. We have some serious catching up to do.
I'm rather surprised by the lack of weight gain. I'm wondering if some of that was dehydration. Looking across the room with her snoozing during her afternoon bolus, I see a little girl on a pillow. She's no longer a little girl though. She's grown so big, only having six inches until she fills the entire contour pillow. Growth has been slow, but if I think back to where she was just a few months ago, it amazes me to see how far she has come.
It'd be even more amazing, I'm sure, had she been getting full feeds all along. I can't even imagine how much stronger she'd be, if she had full nutrition. It makes me mad to go to that dark area of 'what if's' and 'wtf's' and so I don't normally allow myself there. It doesn't do Andi any good. It does however make me stronger when it's time to say 'no!' to something a Dr. suggests, standing firm in my decision. They may be more educated than I, but, I know my little girl and I live this life 24 hours a day, whereas, they just get a glimpse of her in the course of an hour or two.
All that being said, I strongly believe that kids are resilient, and she will go through spurts of growth. Andi's going to be great, super strong, and will advance faster than they say she will. The Dr. said that depending on how the swallow study goes, he believes that Andi might be able to get off the g-tube within six months. As Dr. Mom, given a normal swallow study, my goal is to cut that timeline considerably.
Friday, April 22, 2011
Progress Update!
Andi has been working on her tummy time & oral feeds. Her OT was really excited by the progress she has made in the past week. Her neck & arm strength is getting much better. Her feeds have been tolerated and even sped up a little bit. Andi has even learned how to drink from a straw! I have started to conclude the air bubbles in the belly culprit is none other than her beloved Froggy. So, I've started to steer her away from her pacie, which speech specialists actually prefer.
Here are some recent photos! Does she look heavier?
Here are some recent photos! Does she look heavier?
Friday, April 15, 2011
Goodbye Thirties!
So tomorrow I turn not just another year, but the big 4-0. [Don't worry, I accept gifts all year long, so you still have time to shop...] Normally, on such an occassion, one tends to reflect, ponder choices made, look to the future, and plan what direction to take their path. While I'm doing a bit of that, my birthday also stings a bit more since yesterday. Yes, just yesterday. While waiting for the elevator after Andi's sedated echo, some schmoe (that's the nicest word I can conjure) chatted to me briefly about babies, and how he has some spectacular granddaughter and then he asked me, 'is that your granddaughter?' No joke. I was so taken back by the question, I snapped a quick, stunned reply, 'no, she is my daughter.' Although I didn't look at them, I could feel the younger kids he was standing with cringe at his error. While I'm not really all that upset with what he asked, I'm just flabergasted by the ignorance or stupidity of some people, seriously. Yeah, let's keep cutting education America! THERE'S the answer to all our financial problems! Let's let China dictate the next century, since they've invested in their people, but whatevah!
Andi's sedated echo went swimmingly. Her cardiologist said that her heart looks as good as he could hope. The leak on the right side is gone, and the leak on the left side is mild-to-moderate...something that we'll just continue to keep an eye on over the years. At some point, should it not improve, they might need to go in there and try to seal it up, but, for right now, it's minimal enough where she's good. The pressure on the right side is now good, so ... goodbye Viagra!!! Yippie! He doesn't want to see her again until December or January! How nice that is to hear! Here's a glimpse of how far she's come. When we were released from the hospital on September 24, 2010, Andi was on 11 medications. Eleven! Today, she's only one three. One for acid reflux (prilosec), amoxicillin for her bladder reflux - to prevent UTI's, and enalipril. I asked her cardiologist yesterday for another explanation of why she was on that medicine, because as old as I am, I certainly couldn't remember. He explained that due to that leak on the left side... we give her enalipril to lower her blood pressure slightly, so that it assures the blood will go up through the heart and not in the wrong direction. Hopefully, that's a good enough interpretation of what he said!
We are supposed to work on tummy-time twice a day, at least. In addition to that, we can throw butter, olive oil or polycose into any food she eats orally. We're working on it. Tonight, Daddy Bean and I will be working on expanding our own waistlines as we go dine high on the hog at El Gaucho. I call it 'el gauge-o, the wallet-o!' Luckily for us, we have a nice fatty gift certificate to use! *happy dance!* We've only been there once, but we deemed it our favorite steakhouse in all of Portland. Super Yum!!! It's the perfect place for me to say farewell to my 30's with glee.
Andi's sedated echo went swimmingly. Her cardiologist said that her heart looks as good as he could hope. The leak on the right side is gone, and the leak on the left side is mild-to-moderate...something that we'll just continue to keep an eye on over the years. At some point, should it not improve, they might need to go in there and try to seal it up, but, for right now, it's minimal enough where she's good. The pressure on the right side is now good, so ... goodbye Viagra!!! Yippie! He doesn't want to see her again until December or January! How nice that is to hear! Here's a glimpse of how far she's come. When we were released from the hospital on September 24, 2010, Andi was on 11 medications. Eleven! Today, she's only one three. One for acid reflux (prilosec), amoxicillin for her bladder reflux - to prevent UTI's, and enalipril. I asked her cardiologist yesterday for another explanation of why she was on that medicine, because as old as I am, I certainly couldn't remember. He explained that due to that leak on the left side... we give her enalipril to lower her blood pressure slightly, so that it assures the blood will go up through the heart and not in the wrong direction. Hopefully, that's a good enough interpretation of what he said!
We are supposed to work on tummy-time twice a day, at least. In addition to that, we can throw butter, olive oil or polycose into any food she eats orally. We're working on it. Tonight, Daddy Bean and I will be working on expanding our own waistlines as we go dine high on the hog at El Gaucho. I call it 'el gauge-o, the wallet-o!' Luckily for us, we have a nice fatty gift certificate to use! *happy dance!* We've only been there once, but we deemed it our favorite steakhouse in all of Portland. Super Yum!!! It's the perfect place for me to say farewell to my 30's with glee.
Thursday, April 14, 2011
CHARGE Mom's UNITE!
I have been trying to read up on other blogs written about other families who have children with CHARGE Syndrome. Honestly, I don't get very far, because frankly... I can't allocate the time! However, what I am able to consume, I am completely amazed and humbled by what other Mom's deal with. It puts me in my place, and keeps me from going batshit crazy. People have said things to me like, "I can't believe how strong you are!" or "I don't know if I could do it!" and I can't help shake my head in kind of a lost confusion and think, 'yeah, you could, as you do what you have to for your kids. If you wouldn't, then you shouldn't have kids!' I also think that we're only as strong as required. Most of the time, I feel like I'm in a deep fog and just dealing with each day to day goal.
But, seeing all these families, just like us - even, uhm, *cough, cough* younger than us, dealing with the ten levels of hell that comes with having a kid with CHARGE and the multiple issues, hospitalizations and surgeries it entails. It makes me mad to see what all these kids are dealing with, yet, no one outside of us affected by CHARGE, know what CHARGE is. It's insane. Before Andi was born, I'd never heard of it. It makes me pretty curious to know what other CHARGE Mom's knew or didn't know. I mean, were you classified high risk pregnancies and seeing perinatologists? Did you know your child had CHARGE before birth? Did you have the genetic test prior to delivery? [The one that costs only a couple thousand dollars... mere pocket change for those of us with multi-million dollar babies!] What was your experience, ...if you're willing to share it?! If you would rather share your story personally, our email addy: abean528@gmail.com Please contact me, because I'm sitting here pretty pissed at what you're going through, let alone us. Plus, I keep having dreams about the book I envision writing. I'm not the strong one, Andi Bean is the strong one. She'd take down Hulk or Superman, no sweat. I'm sure your kiddos could too!
Lastly, I think us CHARGE Mom's should unite on our own and give each other ears, e-shoulders, and whatever support we need. I've always said when things settled down, we'd probably lobby for awareness of CHARGE Syndrome. I'm not there yet, but I'm pretty upset that 1 in 8-10,000 children are born -- WORLDWIDE, and yet no one knows about it. I'm getting fired-up, fueled by a crazy love of a kid who has been through a lot of ridiculous shit in only ten short months.
But, seeing all these families, just like us - even, uhm, *cough, cough* younger than us, dealing with the ten levels of hell that comes with having a kid with CHARGE and the multiple issues, hospitalizations and surgeries it entails. It makes me mad to see what all these kids are dealing with, yet, no one outside of us affected by CHARGE, know what CHARGE is. It's insane. Before Andi was born, I'd never heard of it. It makes me pretty curious to know what other CHARGE Mom's knew or didn't know. I mean, were you classified high risk pregnancies and seeing perinatologists? Did you know your child had CHARGE before birth? Did you have the genetic test prior to delivery? [The one that costs only a couple thousand dollars... mere pocket change for those of us with multi-million dollar babies!] What was your experience, ...if you're willing to share it?! If you would rather share your story personally, our email addy: abean528@gmail.com Please contact me, because I'm sitting here pretty pissed at what you're going through, let alone us. Plus, I keep having dreams about the book I envision writing. I'm not the strong one, Andi Bean is the strong one. She'd take down Hulk or Superman, no sweat. I'm sure your kiddos could too!
Lastly, I think us CHARGE Mom's should unite on our own and give each other ears, e-shoulders, and whatever support we need. I've always said when things settled down, we'd probably lobby for awareness of CHARGE Syndrome. I'm not there yet, but I'm pretty upset that 1 in 8-10,000 children are born -- WORLDWIDE, and yet no one knows about it. I'm getting fired-up, fueled by a crazy love of a kid who has been through a lot of ridiculous shit in only ten short months.
Wednesday, April 13, 2011
Little Princess Andi
Everyone knows that Andi is a princess. Now, thanks to the fashion finds o' Ginga... we now have proof:
The jelly bean got a bath this morning, since she soaked herself in Neocate upchuck at 5 a.m. Her belly revolting due to air bubbles.
This bath of the royal cuteness was after she feasted on a partial bowl of rice cereal with sweet potatoes. I think it had too much cereal and not enough sweet potato to appeal to her majesty. But, she grabbed the spoon and slathered herself and her high chair with the ooey goodness presented to her. Since her photo shoot, she's had a small chunk of banana, of which she stuck in her mouth and declared herself not all that interested. The snot monster lurks, and we can't seem to capture him completely.
That being said, Andi is scheduled for a sedated echo cardiogram tomorrow. Due to her cold though, they might declare it not a good time to sedate her. We'll have to go and have them make that decision after seeing her. They are doing a sedated echo so they can get into the right side of her repaired heart and measure the pressure in there. Remember, she had pulmonary hypertension after surgery on that right side, thus, started our ever popular prescription of Viagra. Should they find that the pressure is good, we might be able to finally get off the junk that warms her from the inside and makes her cheeks rosy red.
It sounds like Andi is trying to say 'Daddy!', but really, I think she's trying to say, "Mommy is the best Mommy ever!" I'm just stating my own personal interpretation. She also says "hi!" That, was actually confirmed by a couple whom were sitting by us awaiting our lab draw just yesterday. She said it and they started laughing and saying 'Hi!' ... so, that I'm not hallucinating. The 'Daddy' part though... the jury is out on that one.
Here are a few impersonal photos from our trip:
The jelly bean got a bath this morning, since she soaked herself in Neocate upchuck at 5 a.m. Her belly revolting due to air bubbles.
This bath of the royal cuteness was after she feasted on a partial bowl of rice cereal with sweet potatoes. I think it had too much cereal and not enough sweet potato to appeal to her majesty. But, she grabbed the spoon and slathered herself and her high chair with the ooey goodness presented to her. Since her photo shoot, she's had a small chunk of banana, of which she stuck in her mouth and declared herself not all that interested. The snot monster lurks, and we can't seem to capture him completely.
That being said, Andi is scheduled for a sedated echo cardiogram tomorrow. Due to her cold though, they might declare it not a good time to sedate her. We'll have to go and have them make that decision after seeing her. They are doing a sedated echo so they can get into the right side of her repaired heart and measure the pressure in there. Remember, she had pulmonary hypertension after surgery on that right side, thus, started our ever popular prescription of Viagra. Should they find that the pressure is good, we might be able to finally get off the junk that warms her from the inside and makes her cheeks rosy red.
It sounds like Andi is trying to say 'Daddy!', but really, I think she's trying to say, "Mommy is the best Mommy ever!" I'm just stating my own personal interpretation. She also says "hi!" That, was actually confirmed by a couple whom were sitting by us awaiting our lab draw just yesterday. She said it and they started laughing and saying 'Hi!' ... so, that I'm not hallucinating. The 'Daddy' part though... the jury is out on that one.
Here are a few impersonal photos from our trip:
 |
| our view in Sandestin, FL |
 |
| Ginga's hydrangea |
Tuesday, April 12, 2011
Crisis Averted!
The clouds have parted.
The sky is clear.
It's cold as sh*t outside.
But our crisis has been averted.
Andi's weight yesterday: 12 lbs, 7 oz's
Andi's weight today: 13 lbs, 1 oz.
10 oz's gained in one day...all due to dehydration.
Her labs showed a complete reversal -- all to normal levels.
Her Dr. was so pleased, he said it made his day.
He also said, after watching her drink from her nosey cup, that he doesn't care how she gets the calories, but to make sure she gets the calories. We have a feeding clinic appt. up at the hospital in a couple of weeks. That's in addition to our favorite OT, whom also helps us with feeding exposure. Yesterday Andi held, smelled and gummed a carrot, a slice of apple, a baby yum-yum (cracker), and a slice of bell pepper. She was interested, but without a mouth full of teeth, pretty useless. However, that was our OT's suggestion. Let her experience different foods, textures, smells, and let her get sloppy with food - if she wants to. We haven't gotten that far with it yet, but that's on our agenda.
The sky is clear.
It's cold as sh*t outside.
But our crisis has been averted.
Andi's weight yesterday: 12 lbs, 7 oz's
Andi's weight today: 13 lbs, 1 oz.
10 oz's gained in one day...all due to dehydration.
Her labs showed a complete reversal -- all to normal levels.
Her Dr. was so pleased, he said it made his day.
He also said, after watching her drink from her nosey cup, that he doesn't care how she gets the calories, but to make sure she gets the calories. We have a feeding clinic appt. up at the hospital in a couple of weeks. That's in addition to our favorite OT, whom also helps us with feeding exposure. Yesterday Andi held, smelled and gummed a carrot, a slice of apple, a baby yum-yum (cracker), and a slice of bell pepper. She was interested, but without a mouth full of teeth, pretty useless. However, that was our OT's suggestion. Let her experience different foods, textures, smells, and let her get sloppy with food - if she wants to. We haven't gotten that far with it yet, but that's on our agenda.
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