Adorable-ness

In all the negativity lately, I thought I needed to post something positive!

We were in our usual Monday morning hurry the other day and Brenna needed to bring a baby to daycare with her, so of course, Kara thought she should have one too. Normally, I object but since Kara has been following in Brenna's foot steps lately, I let my new little Mama have her baby too.

I watched them through the mirror in my car as I was driving. Brenna playing with her baby, Kara mimicking Brenna's moves with hers. It was absolutely adorable and melted my heart. My baby is getting big. I've tried to not "baby" her so much in the past week and expect a little bit out of her and she's taken that on full force!

I wish I would have pulled over to take a picture. Next time, I'll take that extra minute and do that. These are the moments to treasure forever! :)

Disgusted.

Does a good doctor mean the staff is compromised? Does good staff mean the doctor is compromised? When we were seen at MN Gastro last January the staff was very nice and helpful. The doctor, however was not. It seems the opposite now with the staff at the U that I've had to deal with. I just want a team to work together to get Kara figured out.

I've been waiting over a week for a call back from the nurse at the U with some information for us. We have played phone tag a few times but I've specifically left my work and cell number with her. I got to work this morning and there was a message on my voicemail from her which made me instantly irritated - my work voicemail specifically states that I'm not in the office on Fridays. I left a disgusted message this morning stating these labs were done on the 6th, that she told me she was going to try and get us in last week or this week, that I'm still holding out for answers, and once again, that I'd be available at work til 3:30 and after that, by cell, leaving both numbers again. I also called quite a few times throughout the day just to see if she'd answer. I left work with no phone call, and didn't receive one tonight either.

I don't know what to do regarding Kara's medical care. I feel like I am aimlessly wandering these halls of FPIES and doing it with no help from the medical profession. The doctors offer suggestions and then say "come back in a month" or "come back in three months." I feel like it's a damn good thing I have the common (and sometimes not so common) sense, family in the medical field, time to do hours of research on FPIES, and have Mommy sources who've been there done that. Without this, who knows where Kara would be right now because I can't seem to get any help from the professionals that should be helping us out. It just seems that there should be more out there than what I am getting. I don't know what I am looking for - maybe lab results back the next day, or perhaps even in the same week, from a simple lab that takes a minute to process? An answer in a day or so when I call and tell the nurse that my baby's dirty diapers are breaking her skin open wide almost immediately after going and I don't know what else I can do beside cry right there with her. That maybe we should quit screwing around and do the scope already so we can see what her insides look like. I don't feel like these requests are too much, so why can I not get any replies to any of this? I'm so frustrated once again.

Right now we are in a pretty good place with Kara but her only safe foods at this point are her Neocate and corn product with the exception of the bananas that we are trialing right now. My baby is 15 months old - we should be a lot further than this, or have at least been able rule out more foods than we have.

I wish there was someone in this state, or even area that has had luck with a facility and dealing with FPIES because Kara, and others are struggling.

Accidents Happen

We've had a busy weekend. Lots of running around, trying to put the house back together after the kitchen remodel, Mommy not feeling well, and too many accidents have happened after doing so well for so long. As of yesterday I was really hoping that her accidental ingestion's were going to lead to nothing because it was "so far, so good".

Friday morning Kara got a hold of Big Sisters chocolate milk. We carried our cereal bowls to the bathroom to rinse out (no kitchen yet!) and got sidetracked after that. Later on, Kara came walking over to me to hand me Brenna's sippy of chocolate milk. She was so excited to have her hands on it! I don't know that she even got any of it but I'm sure she tried it. Needless to say, I was paranoid all day that something would happen, but nothing did.

Dad has been busy with the house remodel and not around much, so wasn't quite sure what we were doing with diet this week. He took her on some errands so I could get some rest and gave her a french fry after a stop at McDonald's. The 16 year old in the drive through window assured him there was no soy in the fries, they are fried in vegetable oil. I showed him when he got home that vegetable oil is soybean oil. I looked online at the ingredients in McDonald's french fries and they also have dairy in the coating so that right there was two strikes but again, we waited for a reaction and nothing happened.

Through all of this, I really started questioning her FPIES. The dietitian is the one that suggested we take Kara 100% off of dairy and it's been over a month since she's had any food with dairy in it. Here she had had two different foods with dairy and one with a good amount of soy and nothing happened. I thought maybe we could go back to foods that have lower amounts of dairy and soy in them, eventually, after we completed our long list of food challenges.

Fast forward to this morning - she was really, really fussy. I got her out of her crib and changed her diaper, not putting her pajama pants back on her, letting her run around in her diaper. Minutes later, I noticed her pulling at her diaper and immediately smelled that nasty, familiar smell. Brian helped me change her, trying to comfort her and hold her hands while I carefully tried to clean her up without hurting her anymore than she already hurt. Her bottom, from just minutes in that diaper, had lots - probably ten or more, open spots that were bleeding already. Prior to this, i had her bottom all cleared up, it was better than it has been in a long time! She was cranky all day - really fussy and really needy. She just wanted to be held for the majority of the day but wasn't really content with anything.

I'm hoping that all it's a delayed reaction to the soy and/or dairy. I did start her on bananas besides her corn products because I wanted something more to put in her diet and I was pretty sure that the bananas were going to be safe. I guess if she doesn't seem to get better in the next few days than we can blame it on the bananas but my instinct is usually pretty good with her.

Oh, and because all things run in threes, when we got home from going out in the boat today, she got a hold of Brenna's cheddar goldfish that I had in a baggie for Brenna as a snack. So, we're not in the clear yet. I had SUCH a handle on things and this weekend we were cursed.

May this week be better. My kitchen is done, I'm hoping my allergies will settle down so I can breath, sleep, not cough or sneeze around the clock, and that we can move forward with the bananas and then hopefully add a vegetable to the mix as well. Oh, and I'm convinced mine IS just allergies so I'm really hoping my kids don't get sick too! :)

15 Month Check Up

Kara is on Day SIX of feeling good and NO icky diapers! This is amazing. For some reason though, she is broken out in eczema again. I'm blaming this on the sticky weather and crossing my fingers it's not from the corn products she's been eating.

Tomorrow I am home, my usual Friday off with the girls. I am planning on introducing banana into her diet tomorrow if everything goes as planned. I'm anxious to get a little variety into her diet.

Today Kara had her 15 month check up. She GREW! She's 21 pound, 6 oz. She went from the 22nd percentile at 12 months to the 28th percentile at 15 months! She's in the 45th percentile for height-weight ratio. She's doing great. I think it's the 30 + ounces of Neocate that she's drinking in a day lately! We talked about how she just started walking and she doesn't have many words yet. There's a few other minor things that she's delayed on. I keep saying she's so baby yet and this went to show it. I need to "toughen up" with her, that's for sure!

We discussed her 12 months shots at full length. Each time we've been in she's been too sick to get them and we didn't want to add anything else to the mix. I was prepared to say no, and to hold them off a little longer but as we talked, I decided I didn't want to keep delaying them.. The MMR has egg in it and I talked about how I'm nervous about this because even though her scratch and rast tests came up negative for egg, the GI Dr still wants egg to be at the bottom of our "maybe" list. In the end I decided to have her get both shots. Now I'll be watching her like a hawk and re-thinking the banana trial.

We got another prescription for Elidel for this eczema that I can't seem to clear up as well as a prescription for her bottom. It's a mixture that would be used on colostomy patients since she breaks open right away when she has a reaction and with the upcoming food trials, this could be happening more often that not. (Hopefully not though.)I believe it's a mixture of a yeast med, some kind of stoma cream and aquafor. So, we'll have this ready to go in case it's needed.

We also talked about the bottle. Our specialists have said not to worry about taking the bottle away since she needs the Neocate but the doctor today said to start trying a straw sippy - maybe she'll take to that better than a sippy since she won't touch Neocate out of a sippy cup. I think I'll look at some at the store tonight but I'm not convinced we need to even begin to take it away since she's finally thriving!

All in all, it was good. We HOPE not to be back until her 18 month check up. We need to work on a few things but she's growing so that's all that matters at this point!

Day Three!

We are on day three of feeling good! That awful, awful soy. I still kick myself about it but we made a major turn taking that out of her diet. We've been on day three before of good days only to be crushed hard soon after. Now that I've elimated that SOY out of her diet completely, and am confident that I'll never make that kind of mistake again, I have faith that we'll have good days at least until we start something new.
Kara had a bowl of corn pasta tonight. She ate it right up, was excited to have that to eat. I'm confident that she's going to do just fine on tonights meal. I think we are going to trial bananas next - bananas can be used as an egg substitute in baking so this will really open up some more options for us.
Our fail list is officially RICE, OAT, DAIRY, SOY.

Improvement

We've had two full days now of nothing in Kara's diet but Neocate Jr. and Kix as a snack for her to munch on while we are eating. We've also had two full days of "normal diapers" and no tummy aches. Amazing. The barley was hurting her more than anything with the soy in it.
I'm not real sure what our next step is going to be. I feel like I'm depriving her (mostly because of constant comments of "That's ALL she can have???") but she seems to be doing pretty good. I know we should continue this for a good week, right, fellow FPIES Mommies? I need the reassurance that what I'm doing is right because it feels so wrong to not be feeding her like we were but she feels pretty darn good.
What's a good recommendation for a 2nd food to try? I'm not sure the carrots and apples were fails now, with the amount of barley she was consuming at that time that had the hidden soy in it. I'm going to say soy is definitely a fail now though, instead of just a possible! Should I go with a fruit, vegetable, should I trial wheat? I'm looking for something with the most possibilities for meals and also with some filler in it. I feel like we are back to a newborn again because on the formula, she is constantly hungry!

Mommy Mess-Up

So it's no secret that I've been incredibly frustrated with not figuring anything out as far as Kara's diet goes.

Yesterday I'd had it. Kara's been hungry, fussy, just plain old not happy about the lack of food that we've been giving her and her digestive system has had no change, in fact, maybe it's even gotten worse. She's had such minimal foods lately and things haven't cleared up one bit. I started to think we were going to have NO SAFE FOODS for her. This warranted a call to the U yesterday and a return call today with the nurse. They are going to try and squeeze Kara in next week at the U, if not next week, then the week after.

This morning she woke up with a really nasty diaper, as usual. This is the way 3/4 of them are lately. She now has four open spots. It breaks my heart. I just want to cry as I hug her and hold her, try to console her after getting her cleaned up.

This afternoon I came back to my in laws to put the girls down for a nap. I sat down and posted a "vent" on the FPIES message board that I follow and then flipped back to facebook. I started chatting with Joy, a Mom in MN who has a boy close to Kara's age with FPIES. She's become an awesome resource and a great friend in just a matter of a couple weeks. She's gone through so much with her little boy and relates to our journey. She asked me if Kara was on Gerber Barley, in which I answered yes. She continued to let me know that Gerber has SOY in it and this could be part of what's going on because a lot of people who have dairy allergies also have soy allergies and soy is another common FPIES reaction. Maybe you can see where this is going...

WAIT A MINUTE. GERBER BARLEY HAS SOY IN IT? BARLEY THAT SHE'S BEEN ON SINCE SHE WAS 6 MONTHS OLD HAS SOY IN IT? THE BARLEY THAT SHE'S BEEN EATING THREE TIMES A DAY FOR THE LAST WEEK HAS SOY IN IT?

Why hadn't I thought of this before? Most importantly, why didn't I ever read the barley label? Wait, I did. WHEN SHE WAS 6 MONTHS OLD! Since we've been feeding her this here and there for so long, I never thought to re-check the label! After I stopped nursing we went from enfamil to soy to Nutramigen. The nutramigen didn't work so we went to Neocate. We cut soy out of her diet (for the most part - she can handle minimal soy) after the soy milk fail. I think that with the barley being fed to her so much lately, she's getting all that soy and it's starting to become amounts that she can't handle. Who knows if she would have eventually had a full blown FPIES reaction or not, I probably would have tossed it off as a barley fail and still never checked the label!

I felt so small finding this out. I'm suprised I held myself together, i wanted to bawl! Joy assured me that these things happen (thanks SOOO much Joy, I'm forever greatful for you!!!) even when you double and triple check labels. I still feel so awful about it.

So, with barley cereal out of the question now I stopped at Cub on my way home from Brainerd. I didn't come home with much - quick barley (which I don't even know if she'll eat), and some malt o meal which is wheat and barley. I don't know that she'll have either one anytime soon - I may just stick with her KIX and Neocate for a few days, as long as Kara will allow, anyway. Maybe the whole wheat pasta will be ok, but for now, we need to find a baseline. This is what we should have been doing for the last week, but with not knowing about the soy, ugh. I'm still kicking myself for not checking that label again.

The FPIES message boards are wonderful sources of info. Many of the Mom's know more than most of the physicians. With FPIES being so rare, it's almost unheard of but these Mom's do their research and put different babies circumstances together to try and figure out the puzzles for their own babies and teach their doctors as they go. They are a powerful group of women and I am forever greatful for coming across this group. Again, thanks JOY!!!