Today was supposed to be the long-awaited cardiology appointment. Last night we got hit hard with a blizzard and after getting up early, watching weather reports, radar, and different conversations, I was finally convinced that we weren't going to make it. I want piece of mind of this possible heart problem so bad! I've contained my anxiousness by putting it in the back of my mind, taking things one day at a time and today was supposed to be the day that those thoughts were put to rest!
I called The Heart Center on my way to work to cancel and have the gal call me back to reshedule, hopeful that maybe an afternoon appointment would open up and we could make the drive a little later. This appointment took over a month to get! Once I got to work, I spoke with her and our newly scheduled date was January 4th. I couldn't wait that long! I asked her what other clinics she goes to - maybe we could get in there, and she is actually through the U of M so she gave me a few different phone numbers to call. I called the U, they could possibly get us in on Dec. 20th...a little better but I was told she's only at that clinic once a month. UGH! Why does this always have to be so complicated?!
I finally found out her main clinic and called the St. Paul Children's Specialty Center. I explained our situation and since they are part of the U as well, she was able to pull all the records up from our visit. She took started verifying all of our info - basic, then started going in to insurance and I got hopeful! At the end she said "ok, we'll just need the holter report sent to us, we've got everything else. Can you make it on Monday at 10:45?" YES! It was THAT easy? What the heck was I doing waiting on St. Cloud for 6 weeks and thinking about waiting on the U for 3 weeks?
THIS is why I take matters into my own hands on all these appointments. Closer isn't always better. St. Cloud is an easier drive and probably 30 minutes closer, but really, what's 30 minutes when you already have to take a day off work and travel? Not much to me!
I saw a fellow FPIES Mommy's facebook post today - it said INSURANCE AND DOCTORS = FULL TIME JOB. Amen. This is just another example of how complicated this life can be!
Tuesday, November 30, 2010
Sunday, November 28, 2010
Give Thanks!
This year, I think I was most thankful for the progress that we have made with Kara's diet and her health in the past few months. She had a plate full of food - beans, ham, whole wheat pasta, potatoes and a piece of bread. It was nice to have her sit with the entire family, with a plate full of food like the rest of us had. She was so excited about her dinner that she didn't care about what the rest of us had on our plates!
Wednesday, November 24, 2010
Allergist Update
Kara saw Dr. Helm, our allergist today. I am so pleased with him. Although there aren't many answers to FPIES (Or any, really!) he has had ideas for us and has given us somewhat of a plan as far as what to trial next and what our plan will be down the road, as Kara gets a little older and hopefully begins to grow out of some of these FPIES triggers.
Dr. Helm walked in the room and immediately complemented us on the TWO POUND WEIGHT GAIN since the last time he saw her, six months ago. He was very pleased! I laughed and told him it's all that Neocate she drinks! He asked me about her diet now because it has to be from more than just the Neocate. I started listing her foods and he was shocked that we've had so much progress. We've got a great little menu going, I was told!
I had three things on my list to discuss today.
Dr. Helm walked in the room and immediately complemented us on the TWO POUND WEIGHT GAIN since the last time he saw her, six months ago. He was very pleased! I laughed and told him it's all that Neocate she drinks! He asked me about her diet now because it has to be from more than just the Neocate. I started listing her foods and he was shocked that we've had so much progress. We've got a great little menu going, I was told!
I had three things on my list to discuss today.
- Soy: I've been really irritated and confused with Kara's soy intolerance lately and the more I learn, the more confused I get. I asked him about it and his thoughts on what we can do since she never had a "classic" fpies reaction. He explained it like this: soy oils and soy lecithin are made from the fats from soybeans. They don't contain proteins so she should be able to handle this so we can start trying it in small amounts. We have to stay away from anything with soy in it that doesn't say oil or lecithin, as she could have a reaction from the soy protein. I'm not sure how Kara is going to do on this, but I'm willing to try as it would open up a whole new window of possibilities. A few months ago when she was eating her barley cereal three times a day she was really having a hard time. One of the things we were convinced was causing the problem was the soy in it so we stopped, and stopped ALL soy since that day. Looking at the barley box, it contains soy lecithin so if we find that she can handle lecithin foods, it's a whole new puzzle that I don't think we are going to touch regarding the barley episodes months ago. Some FPIES kiddos have problems with both - the soy oils and the proteins. Kara could be one of these but it's a risk that we feel is going to be safe enough to try. She was IgE negative to soy, meaning that it isn't a "true" allergy like a peanut allergy is, but she never had the classic vomiting til shock, FPIES reaction that she had to the rice and oat. I'll trial it slowly and safely and I'm already nervous, reading labels on foods that she could have potentially had tonight, had I wanted to start the soy trial yet. Wow. I think I could have written an an entire post on soy alone!
- Dairy. Our other forbidden. Kara has never actually had dairy other than an Enfamil formula for about a week at a year old. We don't know if she has FPIES to dairy or not, we just know that her IgE levels went up from six months to one year giving us enough information to stay away from it. I asked Dr. Helm today if it's a lab we could run again, just to know if it rose again. He said we could but it would be better to wait for a year from the last one. I explained why I was curious about these levels - dairy is in a lot of cooked foods - most breads, for example. He gave me the go ahead to very slowly and cautiously let her try it and see where she's at - only foods that are cooked and have dairy listed towards the very bottom of the ingredient lists.
- Neocate. Due to Kara thriving, and her love of her bottle, I asked him how much Neocate she should be getting in a day. He wants her on around 18-24 ounces a day still. She's on anywhere from 24-30 ounces currently so we aren't too far off. My goal I think will be to get 6 ounces in her for breakfast, lunch and dinner, like you would a glass of milk, and then fill in with water and juice in between, just like you would for any child.
You Turkey!
We haven't done a food trial for a few days, well, over a week because of other events that have happened at our house. Only one person is allowed to have problems at a time and I wasn't going to risk it any more than that by trialing a new food with Kara!
Since meats have been going well, I thought with Thanksgiving coming that we'd trial turkey tomorrow. I was a little nervous, being Thanksgiving and having a reaction over a holiday but since she hasn't had a reaction in so long, I guess I was getting a little too confident and not thinking to clearly.
At Kara's allergist appointment today, we went over her food list and he mentioned foods to stay away from again. In this conversation, he told me no turkey for Thanksgiving since she possibly has FPIES to chicken. I laughed at my stupidity for not realizing that turkey was poultry and if she can't tolerate chicken she won't be able to tolerate turkey.
No turkey for Kara. Time for Plan B!
Since meats have been going well, I thought with Thanksgiving coming that we'd trial turkey tomorrow. I was a little nervous, being Thanksgiving and having a reaction over a holiday but since she hasn't had a reaction in so long, I guess I was getting a little too confident and not thinking to clearly.
At Kara's allergist appointment today, we went over her food list and he mentioned foods to stay away from again. In this conversation, he told me no turkey for Thanksgiving since she possibly has FPIES to chicken. I laughed at my stupidity for not realizing that turkey was poultry and if she can't tolerate chicken she won't be able to tolerate turkey.
No turkey for Kara. Time for Plan B!
Food List: Our Menu
I keep talking about our menu and how we have it pretty well balanced out. Here is our most recent food list. This works great for the basics but dealing with this no dairy/no soy issue makes me crazy. I hope to post about our allergist visit yet tonight and explain a little more about the soy. I'm hopeful with this!
Basically, the list on the YES column is the ONLY foods Kara can have and if any of those foods have NO's in them, we have to stay far, far away. We have a list of future trials and foods to stay away from, to trial at the very, very end, as our yes list grows. There is a list of common FPIES trigger foods that our allergist has requested we follow as some what of a guide. Kara follows that list with her classic rice/oat/dairy/soy FPIES but since she has possibly FPIES to pears as well, that really threw us for a loop as pears are usually on the "typically safe" list.
Yes No
Basically, the list on the YES column is the ONLY foods Kara can have and if any of those foods have NO's in them, we have to stay far, far away. We have a list of future trials and foods to stay away from, to trial at the very, very end, as our yes list grows. There is a list of common FPIES trigger foods that our allergist has requested we follow as some what of a guide. Kara follows that list with her classic rice/oat/dairy/soy FPIES but since she has possibly FPIES to pears as well, that really threw us for a loop as pears are usually on the "typically safe" list.
Yes No
Corn Rice
Banana Oat
Green Beans Dairy
Nectarine Soy
Mango Pears
Carrot
Tomato
Beef
Wheat
Grapes
Peaches
Pork
The Bottle
Because we are extremely comfortable with where Kara is sitting at on the charts, the doctor brought up that dreaded bottle conversation again.
Brenna was done with the bottle at one year old with the exception of morning and night. We phased out the nighttime one soon after and did away with the morning one well before 18 months.
Kara, on the other hand, is still on a bottle. Many bottles. We were told not to touch the bottle since it was her only nutrition for so long and she wouldn't take a sippy cup. Now we have a decent list of foods for her and she drinks water and diluted apple juice from a sippy. However, she will not drink her Neocate from a sippy.
The bottle is as important to Kara as her blankie. It's her comfort. If she doesn't feel good, she wants a bottle. If she's hurt, she wants a bottle. If she's tired, she wants a bottle. We let it get to this point and now it's all become a behavior. It's going to be tough.
Kara gets up every morning between 4 and 5. We eat an early supper and most nights, she's asking for her ba-ba by 6:45 and in bed by 7. When I hear those cries at 5 a.m. I've come to realize that she's starved. We bring a bottle up to her and she goes back to sleep until I wake her up to get ready for daycare or until she wakes us up telling us we've slept in long enough!
We do a lot of travelling now for various doctor appointments for Kara and it's my fall-back when she's fussy in the car. Hand her a bottle, and she'll usually fall right to sleep. Why would anyone want to change that?!
If she has a reaction (which we pray she doesn't!), we all know how hard it is to get her to drink. If we still have that bottle on board, it will be that much easier than fighting her with a sippy cup!
There are so many reasons for not being ready to eliminate this most prized possession in our house. I think I'll try and make it our New Year's Resolution - to wean Kara from the bottle. What's another 6 weeks, right? The holidays will be done, her specialist appointments will be done for a few months and life should hopefully be more normal than we've known in a while.
Brenna was done with the bottle at one year old with the exception of morning and night. We phased out the nighttime one soon after and did away with the morning one well before 18 months.
Kara, on the other hand, is still on a bottle. Many bottles. We were told not to touch the bottle since it was her only nutrition for so long and she wouldn't take a sippy cup. Now we have a decent list of foods for her and she drinks water and diluted apple juice from a sippy. However, she will not drink her Neocate from a sippy.
The bottle is as important to Kara as her blankie. It's her comfort. If she doesn't feel good, she wants a bottle. If she's hurt, she wants a bottle. If she's tired, she wants a bottle. We let it get to this point and now it's all become a behavior. It's going to be tough.
Kara gets up every morning between 4 and 5. We eat an early supper and most nights, she's asking for her ba-ba by 6:45 and in bed by 7. When I hear those cries at 5 a.m. I've come to realize that she's starved. We bring a bottle up to her and she goes back to sleep until I wake her up to get ready for daycare or until she wakes us up telling us we've slept in long enough!
We do a lot of travelling now for various doctor appointments for Kara and it's my fall-back when she's fussy in the car. Hand her a bottle, and she'll usually fall right to sleep. Why would anyone want to change that?!
If she has a reaction (which we pray she doesn't!), we all know how hard it is to get her to drink. If we still have that bottle on board, it will be that much easier than fighting her with a sippy cup!
There are so many reasons for not being ready to eliminate this most prized possession in our house. I think I'll try and make it our New Year's Resolution - to wean Kara from the bottle. What's another 6 weeks, right? The holidays will be done, her specialist appointments will be done for a few months and life should hopefully be more normal than we've known in a while.
18 Months!
Baby Girl turned 18 months a few days ago. I suppose that doesn't make her much of a baby anymore!
Kara had her well child check up on Monday and she is doing AWESOME! I was so happy coming out of that appointment that even the four shots she had to get couldn't bring me down! We started with her weight. Holy cow, did that scale really say 22 #, 15 oz? That's significant weight gain since the last time she was in. The doctor came in after the nurse was finished with her and immediately pulled up Kara's growth chart. Last February she was at her lowest, a large dip on the chart, down to 17%. She's since been lingering around the 22nd percentile. In the last 3 months we've gotten such a good menu going for her and as I've previously mentioned, she loves her ba-ba. This has resulted in a gain on the charts to THIRTY ONE PERCENT for weight! She's 25th for height which means that her weight gain is NO problem anymore.
All in all, she's doing great which is really nice to hear since we've been through quite a bit, all around lately. It was time for some good news for once!
Kara had her well child check up on Monday and she is doing AWESOME! I was so happy coming out of that appointment that even the four shots she had to get couldn't bring me down! We started with her weight. Holy cow, did that scale really say 22 #, 15 oz? That's significant weight gain since the last time she was in. The doctor came in after the nurse was finished with her and immediately pulled up Kara's growth chart. Last February she was at her lowest, a large dip on the chart, down to 17%. She's since been lingering around the 22nd percentile. In the last 3 months we've gotten such a good menu going for her and as I've previously mentioned, she loves her ba-ba. This has resulted in a gain on the charts to THIRTY ONE PERCENT for weight! She's 25th for height which means that her weight gain is NO problem anymore.
All in all, she's doing great which is really nice to hear since we've been through quite a bit, all around lately. It was time for some good news for once!
Saturday, November 20, 2010
One Year
Today is the one year mark since FPIES entered our lives. I remember every single detail of the evening like it was yesterday. It's a horrible nightmare that replays in my head each time I think of trying a new food.
We were getting ready to go up to the Fire Hall to work Turkey Bingo that night, after just getting home from a few day convention. Because of an eczema outbreak the first time we tried rice cereal, we decided to give it a rest while we were gone. We sat down to feed Kara her rice cereal dinner and were on our way.
Things were going well, I was visiting with people I hadn't seen in a while, Brenna was helping Daddy with Bingo and I was holding Kara. I ran into a friend who hadn't seen Kara in a while. We were talking and I mentioned that she suddenly didn't look too good. That' when the vomiting started - at first it was like she spit up but it just kept coming out, like there was no end to it. I brought her to the office where we changed her clothes and I took my sweatshirt off. She wasn't quite with it. We no sooner got her cleaned up and the vomiting started again. I remember mentioning how she'd been fine, up until a few minutes before that first vomiting reaction started. I asked one of the wives what she thought, because I knew something was wrong! I remember her saying "Go with your gut, Kendall. She doesn't look good and if you don't think she's ok, bring her to the hospital." Thanks, Kim, I will forever remember your support on that horrible evening. I'm sure we'll be talking about it tonight, as we are up at Bingo, remembering last year's events.
The vomiting started one more time, as someone ran to get Brian from the Bingo floor. I was terrified to put Kara in the car seat, but somehow we did, and headed up to the ER which was only a few blocks away. While we were being triaged and before the doctor got in there, these episodes happened a few more times, finally getting to the point of her having nothing left in her stomach to throw up. I remember the doctor checking her out and her finally looking up at us, smiling. He discharged us saying she must just have some sort of a bug, keep a close eye on her and don't give her the cereal for two weeks or so.
A year later we have come so far in finding a diagnosis for you, Kara Lynne, yet some days I feel we have so far to go yet. You've got a pretty good menu going, along with chubby cheeks, a buddah belly and a good set of thighs, but that's because you LOVE your ba-ba. The more of a menu we seem to get for you, the more difficult things tend to get. Your doctor told me that you are thriving because of my strict adherence to you diet and that's something that I need to remind myself of every day. It's so hard for me to say no to you as your sister is eating a tootsie roll from the bank, to be in the park seeing another baby getting a bite of their Mommy's ice cream cone, or to be out for dinner watching a baby nibble on a french fry. It often brings tears to my eyes because to eat, something that should be so simple, is so difficult for you.
We're taking baby steps and making progress, although slow. This weeks starts a series of appointments. I'm so sorry we have to go through all of this but I'm going to try my best to be able to open these windows a little bit wider for you.
We were getting ready to go up to the Fire Hall to work Turkey Bingo that night, after just getting home from a few day convention. Because of an eczema outbreak the first time we tried rice cereal, we decided to give it a rest while we were gone. We sat down to feed Kara her rice cereal dinner and were on our way.
Things were going well, I was visiting with people I hadn't seen in a while, Brenna was helping Daddy with Bingo and I was holding Kara. I ran into a friend who hadn't seen Kara in a while. We were talking and I mentioned that she suddenly didn't look too good. That' when the vomiting started - at first it was like she spit up but it just kept coming out, like there was no end to it. I brought her to the office where we changed her clothes and I took my sweatshirt off. She wasn't quite with it. We no sooner got her cleaned up and the vomiting started again. I remember mentioning how she'd been fine, up until a few minutes before that first vomiting reaction started. I asked one of the wives what she thought, because I knew something was wrong! I remember her saying "Go with your gut, Kendall. She doesn't look good and if you don't think she's ok, bring her to the hospital." Thanks, Kim, I will forever remember your support on that horrible evening. I'm sure we'll be talking about it tonight, as we are up at Bingo, remembering last year's events.
The vomiting started one more time, as someone ran to get Brian from the Bingo floor. I was terrified to put Kara in the car seat, but somehow we did, and headed up to the ER which was only a few blocks away. While we were being triaged and before the doctor got in there, these episodes happened a few more times, finally getting to the point of her having nothing left in her stomach to throw up. I remember the doctor checking her out and her finally looking up at us, smiling. He discharged us saying she must just have some sort of a bug, keep a close eye on her and don't give her the cereal for two weeks or so.
A year later we have come so far in finding a diagnosis for you, Kara Lynne, yet some days I feel we have so far to go yet. You've got a pretty good menu going, along with chubby cheeks, a buddah belly and a good set of thighs, but that's because you LOVE your ba-ba. The more of a menu we seem to get for you, the more difficult things tend to get. Your doctor told me that you are thriving because of my strict adherence to you diet and that's something that I need to remind myself of every day. It's so hard for me to say no to you as your sister is eating a tootsie roll from the bank, to be in the park seeing another baby getting a bite of their Mommy's ice cream cone, or to be out for dinner watching a baby nibble on a french fry. It often brings tears to my eyes because to eat, something that should be so simple, is so difficult for you.
We're taking baby steps and making progress, although slow. This weeks starts a series of appointments. I'm so sorry we have to go through all of this but I'm going to try my best to be able to open these windows a little bit wider for you.
I love you, Baby Girl!
Tuesday, November 16, 2010
Re: Appointments
Re: Allergy Follow-Up
Why does it take over a month to get an appointment with one specialist and when you call for the follow-up, hoping to get in before the end of the year, they tell you that they have not one, but three openings two days away? Don't get me wrong, that's great but I was really shocked - oh, Wednesday? Ok, yeah, that will work...
Re: GI Follow-Up
GI Follow-Up was to be made one month after the procedure. First available at our appointment site? January 6th, almost three months later. First available at main appointment site? January 5th. I think we have the wrong doctor if it's going to take that long to get in to see her, for an appointment she requested. Leaving a third message with the nurse to fit us in resulted in an appointment on December 15th. I think this is our last chance with her, if we need additional GI after this, we'll switch to Children's, where her other care is.
Re: All appointments
I think I've got all of Kara's appointments set up now before the end of the year. We'll be travelling quite a bit so hopefully the weather will cooperate. GI, Allergy, Cardiology and an 18 month "well" child exam (ha!) all in the next two months.
Oh, and we've got November's order of formula on the way so I just have to remember to order Decembers before it's too late. We've got quite the stock pile but since we've met our out of pocket, a stock is just fine with me! :)
Why does it take over a month to get an appointment with one specialist and when you call for the follow-up, hoping to get in before the end of the year, they tell you that they have not one, but three openings two days away? Don't get me wrong, that's great but I was really shocked - oh, Wednesday? Ok, yeah, that will work...
Re: GI Follow-Up
GI Follow-Up was to be made one month after the procedure. First available at our appointment site? January 6th, almost three months later. First available at main appointment site? January 5th. I think we have the wrong doctor if it's going to take that long to get in to see her, for an appointment she requested. Leaving a third message with the nurse to fit us in resulted in an appointment on December 15th. I think this is our last chance with her, if we need additional GI after this, we'll switch to Children's, where her other care is.
Re: All appointments
I think I've got all of Kara's appointments set up now before the end of the year. We'll be travelling quite a bit so hopefully the weather will cooperate. GI, Allergy, Cardiology and an 18 month "well" child exam (ha!) all in the next two months.
Oh, and we've got November's order of formula on the way so I just have to remember to order Decembers before it's too late. We've got quite the stock pile but since we've met our out of pocket, a stock is just fine with me! :)
Saturday, November 13, 2010
Samples!
Our allergist gave us a prescription for some new, flavored Neocate drinks back in September when we were there. I had been reluctant to fill it because it's expensive and we already have 3 unopened cans of the chocolate flavored Neocate that I paid $150.00 for and she won't touch it! Even though the insurance pays for some of it now, we still have to pay out of pocket quite a bit so I've kept the prescription at home, waiting for a desperate time to get it filled.
In the meantime, I was exploring the Neocate website one day and decided to email the company to ask about the other Neocate products. I explained Kara's FPIES and how she is thriving on Neocate but there are days where she is bored with the flavor and we don't have a backup plan if that were to become the norm.
I promptly got a reply back from a rep explaining the different products and letting me know that he needed my address, phone number and Dr.'s name to send a box of samples to us. How awesome is that?! I had asked Dr. Helm when we were at his office if he had samples and he said he rarely gets them so he had nothing. The Neocate Rep let me know that they'd be sending sufficient amounts of samples to his office as well.
On Tuesday, the UPS truck pulled in the driveway and delivered a box. In this box was a whole can of Neocate Tropical, a few packages of flavor straws to put in her Neocate, two boxes of the E28 Splash Juice Boxes, a bag of probably 20 flavor packs and 3 packs of Nutra. I'm not sure that we need Nutra or what to even do with it, but we got it!
That night for dinner, I mixed up some Neocate Tropical and put it in a sippy. Kara took a drink and actually liked it. Prior to this, the only way she'd drink her Neocate is out of a bottle, making me think that she's goign to be on the bottle until she's 5! She'll drink water out of a sippy just fine but won't touch her formula in it. This gives me hope, so the rest of the week we gave her a sippy of Tropical for supper.
This morning Brian is out hunting and I'm dealing with a fussy, out of sorts baby again. I remembered that I wanted to blog about our box of goodies and that made me wonder if a special juice box that's just for her would redirect her enough to be somewhat happy. She was so excited to have one of her own! Brenna gets juice boxes at Grandma's once in a while but Kara hasn't been able to have one. This is finally making her happy. She comes to take a sip, goes to play, comes to take a sip. Sometimes a little re-direction is all a person needs!
In the meantime, I was exploring the Neocate website one day and decided to email the company to ask about the other Neocate products. I explained Kara's FPIES and how she is thriving on Neocate but there are days where she is bored with the flavor and we don't have a backup plan if that were to become the norm.
I promptly got a reply back from a rep explaining the different products and letting me know that he needed my address, phone number and Dr.'s name to send a box of samples to us. How awesome is that?! I had asked Dr. Helm when we were at his office if he had samples and he said he rarely gets them so he had nothing. The Neocate Rep let me know that they'd be sending sufficient amounts of samples to his office as well.
On Tuesday, the UPS truck pulled in the driveway and delivered a box. In this box was a whole can of Neocate Tropical, a few packages of flavor straws to put in her Neocate, two boxes of the E28 Splash Juice Boxes, a bag of probably 20 flavor packs and 3 packs of Nutra. I'm not sure that we need Nutra or what to even do with it, but we got it!
That night for dinner, I mixed up some Neocate Tropical and put it in a sippy. Kara took a drink and actually liked it. Prior to this, the only way she'd drink her Neocate is out of a bottle, making me think that she's goign to be on the bottle until she's 5! She'll drink water out of a sippy just fine but won't touch her formula in it. This gives me hope, so the rest of the week we gave her a sippy of Tropical for supper.
This morning Brian is out hunting and I'm dealing with a fussy, out of sorts baby again. I remembered that I wanted to blog about our box of goodies and that made me wonder if a special juice box that's just for her would redirect her enough to be somewhat happy. She was so excited to have one of her own! Brenna gets juice boxes at Grandma's once in a while but Kara hasn't been able to have one. This is finally making her happy. She comes to take a sip, goes to play, comes to take a sip. Sometimes a little re-direction is all a person needs!
Wednesday, November 10, 2010
Good Week
Our apple week went well. Thursday night I had plans to start a new food Friday morning, beginning to get braver, giving her something she's never had before. All of our food trials so far have been foods that she'd had as a baby but this was when we had no baseline. I've felt fairly comfortable with our trials to this point but now things are going to start getting interesting. Lots more research on foods, lots more anxiety, lots more sleepless nights, I'm sure.
Thursday night I was talking to Brian who was going deer hunting all weekend. Friday morning I made the decision that the girls and I were going to go out of town to have a little fun on our own, putting all food trials aside since she has been doing so well. I'd been wanting to do this for months now but things never quite worked out with our schedules and Kara feeling well enough for me to be comfortable traveling very far from home.
We traveled about three hours south to visit my aunt and her family. Her girls LOVE my babies so what could be better? Time away from home visiting family, good entertainment for the girls (who knew grocery shopping could be so exciting!) and lots of R & R for the Mamma. Travel is a bit difficult - I had to pack her food for the next couple of days and we were going to be in the car during lunch time so I packed an extra bottle, a banana (which was MESSY!) and her "snacky" foods. I couldn't just get her a lunchable like I did for Brenna, or stop at the drive thru - there are NO foods on those menus that she can tolerate!
We had a wonderful time and now I'm procrastinating starting anything else. It's been a crazy week and we've all been tired, plus we have a decent menu right now that she's not tired of yet. Maybe tomorrow...
For now, here is a pic of our grocery shopping maniac. The fuzzy quality is because she was running. Thankfully, we don't have these carts here at home!
Thursday night I was talking to Brian who was going deer hunting all weekend. Friday morning I made the decision that the girls and I were going to go out of town to have a little fun on our own, putting all food trials aside since she has been doing so well. I'd been wanting to do this for months now but things never quite worked out with our schedules and Kara feeling well enough for me to be comfortable traveling very far from home.
We traveled about three hours south to visit my aunt and her family. Her girls LOVE my babies so what could be better? Time away from home visiting family, good entertainment for the girls (who knew grocery shopping could be so exciting!) and lots of R & R for the Mamma. Travel is a bit difficult - I had to pack her food for the next couple of days and we were going to be in the car during lunch time so I packed an extra bottle, a banana (which was MESSY!) and her "snacky" foods. I couldn't just get her a lunchable like I did for Brenna, or stop at the drive thru - there are NO foods on those menus that she can tolerate!
We had a wonderful time and now I'm procrastinating starting anything else. It's been a crazy week and we've all been tired, plus we have a decent menu right now that she's not tired of yet. Maybe tomorrow...
For now, here is a pic of our grocery shopping maniac. The fuzzy quality is because she was running. Thankfully, we don't have these carts here at home!
Wednesday, November 3, 2010
Apple Update
Apples are going well. Kara's loving having that splash of juice in her water, little apple pieces and applesauce. A few months ago, when we previosly trialed them, I wasn't sure if they were going to be a pass or not because we had soy in a food she was getting every day in a hidden source. When she failed pears, I figured apples would also be a fail because of the high sugar content. Since her scope came back negative, I decided to jump in and trial the apples. It's going so well, in fact, that I wanted to start something new tonight but looked at our board and it reminded me I just started apples Monday night. We need to give this a little more time. Maybe tomorrow!
On that note, because of the frequent night waking and tummy aches prior to the apples, I think we need to re-trial carrots or just call them a fail. It's been a few days since she's had them and we've had two nights of good sleep and no tummy aches.
We're making some progress and getting more of a menu every week!
On that note, because of the frequent night waking and tummy aches prior to the apples, I think we need to re-trial carrots or just call them a fail. It's been a few days since she's had them and we've had two nights of good sleep and no tummy aches.
We're making some progress and getting more of a menu every week!
Candy!
Certain members of our family (ah-hem, MOM!) thought it was only appropriate that Kara get some Kara-safe candy in her Halloween pumpkin. She went to great lengths reading labels trying to find dairy and soy free candy and came up with a ideas, twizzlers being one of them. She also got some smarties. Tonight while I was making supper, Brenna was driving me crazy with wanting some candy so I finally gave in and gave her a twizzler. Nothing gets past Kara anymore so I gave her one as well. She chowed it, or so we thought. Minutes later, while setting the table, I looked over to the corner and there, on the floor, where about 20 little bites of red licorice. It's like she sucked the flavor right out of it, gave up on chewing, and spit it right out. Perfect, works for me, except for the mess that she made!
Fast forward to after supper. Brenna had been begging me about a little bag of skittles so we told her if she was a member of the clean plate club, she could have them. She doesn't let us forget anything and ate it all up. Kara saw that she had her little bowl of something good and made it clear to us in her own little language that she needed something too. What the heck, bring out the smarties! I put half the pack in front of her and she quickly ate them up so I gave her the rest. (She's going to be on a major sugar high tonight, it's more sugar than she's EVER had!) I put the rest of them in front of her and then they were gone. She literally shoved every one of them in her mouth, like if she didn't quickly eat them, we'd take them away! I kept putting my hand under her mouth trying to get her to spit them out but she wasn't going to give them up!
Fast forward to after supper. Brenna had been begging me about a little bag of skittles so we told her if she was a member of the clean plate club, she could have them. She doesn't let us forget anything and ate it all up. Kara saw that she had her little bowl of something good and made it clear to us in her own little language that she needed something too. What the heck, bring out the smarties! I put half the pack in front of her and she quickly ate them up so I gave her the rest. (She's going to be on a major sugar high tonight, it's more sugar than she's EVER had!) I put the rest of them in front of her and then they were gone. She literally shoved every one of them in her mouth, like if she didn't quickly eat them, we'd take them away! I kept putting my hand under her mouth trying to get her to spit them out but she wasn't going to give them up!
Tuesday, November 2, 2010
A Scare
We had a scare last night, horrible flash backs of Kara's vomitting til shock reactions. We decided to trial apple in the form of a splash of apple juice in her sippy full of water. Kara was in heaven! Something besides plain, old, boring water! She sucked it down, ate a wonderful supper and was happy!
A short time after supper, Brian was working at the table and Kara needed to be up to see what he was doing. We put her in the high chair and gave her some bran flakes, hoping to get a little more food in her before going to bed. Suddenly she started coughing and gagging. We quick pulled her out of the high chair, the tray and the bran flakes falling to the floor. I held her over my arm, on her tummy as she gagged and gagged. She ended up throwing up a small amount. It was deja vu, Brenna stood there in horror watching until Brian asked her (our BEST helper!) if she would get the broom and clean up the mess. She cleaned it all up while we kept working on figuring out if Kara was ok or not. I was terrrified, Kara was crying in between gagging and Brian and I stared at each other wondering what the heck was happening, praying it wasn't a reaction.
A short time later, she was over it and running around, playing. We are sure now that she just simply choked on one of the flakes. (Simply choked. No big deal, only in the FPIES world where you'd rather have them be choking versus having a reaction to something...there's something wrong with this!) She was happy the rest of the evening, and slept all night. I'm going to proceed with the apples, slowly and cautiously. After that scare, I'm not wanting to experience another reaction or near-reaction anytime soon, or ever again for that matter!
A short time after supper, Brian was working at the table and Kara needed to be up to see what he was doing. We put her in the high chair and gave her some bran flakes, hoping to get a little more food in her before going to bed. Suddenly she started coughing and gagging. We quick pulled her out of the high chair, the tray and the bran flakes falling to the floor. I held her over my arm, on her tummy as she gagged and gagged. She ended up throwing up a small amount. It was deja vu, Brenna stood there in horror watching until Brian asked her (our BEST helper!) if she would get the broom and clean up the mess. She cleaned it all up while we kept working on figuring out if Kara was ok or not. I was terrrified, Kara was crying in between gagging and Brian and I stared at each other wondering what the heck was happening, praying it wasn't a reaction.
A short time later, she was over it and running around, playing. We are sure now that she just simply choked on one of the flakes. (Simply choked. No big deal, only in the FPIES world where you'd rather have them be choking versus having a reaction to something...there's something wrong with this!) She was happy the rest of the evening, and slept all night. I'm going to proceed with the apples, slowly and cautiously. After that scare, I'm not wanting to experience another reaction or near-reaction anytime soon, or ever again for that matter!
Monday, November 1, 2010
More Tests...
I got the phone call from St. Cloud Hospital Cardiology on Friday afternoon that the Peds Cardiologist wanted Kara to have wear a 24 hour holter monitor before her appointment. We also set the appointment up - it's not til the end of November though!
I thought I was Super Mom and headed up to the hospital to get this done. Kara on my hip, Brenna trailing behind. I gave Brenna the pep-talk - Kara has to have a test done, they are going to put stickers all over her chest and hook up a box to it. She's probably going to cry because she's going to be mad but they will not be hurting her. I need you to be a really big girl and my big helper. She was game. She loves being my helper. Note to self, even Super Mom can't handle situations like this, trucking through the hospital with a 20 pounder on your hip, a diaper bag, 3 jackets and a pokey 3 year old in boots.
Kara screamed and fought while the two medics hooked her all up. Brenna stayed busy playing her games on my phone for a little while but the more worked up Kara got, the more upset Brenna got. It finally ended in Brenna standing next to the bed crying as well, so I ended up holding Brenna so she could see, while the two paramedics worked on hooking Kara up, taping her up, and getting it all straightened out. Kara was terrified. When we sat her up and she looked down, the waterworks really started! Poor baby!
One of the girls asked me if I'd noticed any tachycardia and I told her there were a few times that her chest was pounding but it was so fast there was no way I could take her pulse. She said she was trucking along pretty good once they got everything hooked up. I really hope this comes up with nothing!
The name of the game for the next 24 hours was Operation: Distraction. We did anything and everything we could to keep her mind off the fact that she had all those leads taped to her chest (tape from neck to mid belly, and from side to side!) and then a box hanging from it. Remember, Kara has extremely sensitive skin, so she was NOT pleased about all of this.
24 hours and five minutes later, we were back at the hospital to get that thing off! Once again, the sight of it made her cry but when she was done, she hopped down, and said "all done!" and headed for the door. She couldn't be happier! The paramedic said they'd download it and if there was anything critical they'd call us back up there immediately. We've heard nothing and no news is good news!
I thought I was Super Mom and headed up to the hospital to get this done. Kara on my hip, Brenna trailing behind. I gave Brenna the pep-talk - Kara has to have a test done, they are going to put stickers all over her chest and hook up a box to it. She's probably going to cry because she's going to be mad but they will not be hurting her. I need you to be a really big girl and my big helper. She was game. She loves being my helper. Note to self, even Super Mom can't handle situations like this, trucking through the hospital with a 20 pounder on your hip, a diaper bag, 3 jackets and a pokey 3 year old in boots.
Kara screamed and fought while the two medics hooked her all up. Brenna stayed busy playing her games on my phone for a little while but the more worked up Kara got, the more upset Brenna got. It finally ended in Brenna standing next to the bed crying as well, so I ended up holding Brenna so she could see, while the two paramedics worked on hooking Kara up, taping her up, and getting it all straightened out. Kara was terrified. When we sat her up and she looked down, the waterworks really started! Poor baby!
One of the girls asked me if I'd noticed any tachycardia and I told her there were a few times that her chest was pounding but it was so fast there was no way I could take her pulse. She said she was trucking along pretty good once they got everything hooked up. I really hope this comes up with nothing!
The name of the game for the next 24 hours was Operation: Distraction. We did anything and everything we could to keep her mind off the fact that she had all those leads taped to her chest (tape from neck to mid belly, and from side to side!) and then a box hanging from it. Remember, Kara has extremely sensitive skin, so she was NOT pleased about all of this.
24 hours and five minutes later, we were back at the hospital to get that thing off! Once again, the sight of it made her cry but when she was done, she hopped down, and said "all done!" and headed for the door. She couldn't be happier! The paramedic said they'd download it and if there was anything critical they'd call us back up there immediately. We've heard nothing and no news is good news!
Happy Halloween!
It's been a busy last few days, FPIES and non-FPIES related.
We did the usual tradition of carving pumpkins which I was a little nervous about but let Kara do her thing. She as terrified to actually touch them but wanted to badly to put her little scoop in there! We didn't have to worry about her putting any of it in her mouth, she wouldn't let any of it even touch her hands! No complaints there!
On Saturday we attended a kids Halloween party. We fed Kara before we went and got there right as all the kids were eating. Brian stayed outside with the guys and we kept Kara out there with him to run around. She had no idea she was missing out on anything and we were a lot more relaxed about her being around all those kids and all that FOOD! It was a beautiful day so we spent the afternoon playing games with all the kids outside. At one point, the kids were all coloring pictures and there was a large bowl of snack mix out on the ground. I looked over just as Kara got some of it - one of the girls had given her a few marshmallows thinking she could handle those, wouldn't choke on them but didn't know about her food allergies. Thank God we caught it. She probably would have been OK with the marshmallows, she's had them before, but it's the cross contamination of the nuts, the chocolate, the soy, and whatever else may have been in it that would have had me panicked! The goodies the kids got from this party were great - Halloween cups filled with silly bandz, a pencil, eraser, it was food free so Kara didn't have to miss out on anything there! Here is a pic of the girls before the party:
We had a ladybug and a busy little bee on our hands for Halloween. I planned ahead and bought a bunch of little toy animals and things to put in Kara's pumpkin so she wouldn't even notice the candy. That was the way to go! She was so thrilled with all her new toys, nothing else mattered. Our families bought special things for Kara to have, such as smarties and things like that but we successfully got away with her having NOTHING. I think Brenna had 3 or 4 pieces, so we did great on the candy front! There were plenty of other distractions this year - we spent a good part of the evening at the fire hall helping out with the haunted house (chasing the girls is more like it, but I'd like to think we helped a little bit!) so we really didn't have to deal with too much candy. It can stay this way in the years to come. Both Brian and I are not big fans of Halloween now. With the big food holidays coming up, I'm sure this will become the norm. It's not only difficult to find foods for her and to make sure she doesn't notice that she is left out, but it's also incredibly heartbreaking now that she KNOWS she's missing out on things!
Here's some pics of our little lady bug and busy little bee - sorry, this is the best we could do! :)
We did the usual tradition of carving pumpkins which I was a little nervous about but let Kara do her thing. She as terrified to actually touch them but wanted to badly to put her little scoop in there! We didn't have to worry about her putting any of it in her mouth, she wouldn't let any of it even touch her hands! No complaints there!
On Saturday we attended a kids Halloween party. We fed Kara before we went and got there right as all the kids were eating. Brian stayed outside with the guys and we kept Kara out there with him to run around. She had no idea she was missing out on anything and we were a lot more relaxed about her being around all those kids and all that FOOD! It was a beautiful day so we spent the afternoon playing games with all the kids outside. At one point, the kids were all coloring pictures and there was a large bowl of snack mix out on the ground. I looked over just as Kara got some of it - one of the girls had given her a few marshmallows thinking she could handle those, wouldn't choke on them but didn't know about her food allergies. Thank God we caught it. She probably would have been OK with the marshmallows, she's had them before, but it's the cross contamination of the nuts, the chocolate, the soy, and whatever else may have been in it that would have had me panicked! The goodies the kids got from this party were great - Halloween cups filled with silly bandz, a pencil, eraser, it was food free so Kara didn't have to miss out on anything there! Here is a pic of the girls before the party:
We had a ladybug and a busy little bee on our hands for Halloween. I planned ahead and bought a bunch of little toy animals and things to put in Kara's pumpkin so she wouldn't even notice the candy. That was the way to go! She was so thrilled with all her new toys, nothing else mattered. Our families bought special things for Kara to have, such as smarties and things like that but we successfully got away with her having NOTHING. I think Brenna had 3 or 4 pieces, so we did great on the candy front! There were plenty of other distractions this year - we spent a good part of the evening at the fire hall helping out with the haunted house (chasing the girls is more like it, but I'd like to think we helped a little bit!) so we really didn't have to deal with too much candy. It can stay this way in the years to come. Both Brian and I are not big fans of Halloween now. With the big food holidays coming up, I'm sure this will become the norm. It's not only difficult to find foods for her and to make sure she doesn't notice that she is left out, but it's also incredibly heartbreaking now that she KNOWS she's missing out on things!
Here's some pics of our little lady bug and busy little bee - sorry, this is the best we could do! :)
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