Oh darling Bri Bri. It’s been so long since I’ve updated
everyone. First let me start off with how much I love you. Don’t you ever
forget that.
Okay. Where to even begin? I know that I’m going to leave
out some details since it’s been months since I’ve updated this, but I will try
my best to remember the important stuff. We’ve been quiet for the past few
months. Things haven’t been going too bad for you health wise, but we’ve had
some other issues to work out. We’ve gotten your stools down to about 2-3 a
day. Mommy has felt very comfortable with where we are at. We aren’t going too
crazy with your solid foods yet, but we have been able to try actual pieces of
banana, Cheerios and whole wheat spaghetti with very basic tomato sauce! Mommy
even attempted to make you some “pancakes” made out of flour, your Nutramigen
formula, and some banana baby food for flavor. They didn’t turn out great, but
it gives me something to experiment with.
You had your 9 month check up on June 10th. You
weighed 18 pounds 4 ounces and were 27.5 inches long. You hadn’t even gained a
pound since your 6 month check up and had only grown half an inch. Your
pediatrician was a little concerned about this slow growth, but since you are
developing normally, she just wants to keep an eye on your growth for now. It looks
like you are just going to be a small baby. She did push me to try more foods with you,
though. She said obviously to be cautious of your known allergies, but we need
to broaden your foods if we can. As I said earlier, I haven’t really been
pushing your limits. You have certain things that you like and will eat just
fine, such as your baby oatmeal, and we just haven’t branched out too much from
what we know you can have. The pediatrician doesn’t know very much about FPIES
so I feel like our food guidance really should come from your specialist anyway.
I did mention to the doctor at this time that we’ve been seeing a lot of high
fevers. You actually had a temp of about 102 degrees at your checkup. She
checked your ears and throat out and could not find a source of infection at
that time.
When we went in for your April appointment with your
specialist he wanted us to try to introduce some soy into your diet before our
June appointment. We picked out a sweet potato puff that had soy as a main
ingredient and gave you 4 small puffs the evening of Saturday, June 15. We saw
the effects almost immediately. You went up to 6 stools a day on Sunday, Monday
and Tuesday, but we continued to give you a small amount of puffs each of those
days. You had an appointment with your specialist that Wednesday, June 19 so I
was curious to see if he would want us to continue with the soy or not. He said
that you aren’t losing any nutrition right now from not having soy in your
diet, so we will not be trying soy again until you are about a year old. It is
disappointing because it would have opened up a whole new world of foods for
you to eat. We’ve made so much progress to this point and we do not want to go
backwards. You weighed 18 pounds even at this appointment, so your weight was
down from the week before. We just attributed this to all the extra stools that
you had from the soy experiment.
We just started a new day care about three weeks ago. It is an actual day care center so we are dealing with several different caretakers. It has been a challenge to make sure that everyone is on the same page with your food issues. It has also been a challenge to try to explain to them that you always have loose or runny stools and that they shouldn't freak out if they see mucous or blood in a stool. I was worried that we may see blood again after the soy experiment so I did warn the center and you should have seen the look on the lady's face. It was like you came from Mars baby! Plus your diaper rash came back in full force. I mean you were raw. I swear people look down on you as a parent if your baby has bad diaper rash. They just don't understand the circumstances we are dealing with.
We have noticed the past few months that you’ve been getting
frequent high fevers, but we just dismissed that as being from teething. Even
though they would get pretty high, I was never too concerned. The pediatrician was not happy with me when I told her this. I’ve also noticed
that as we have been able to give you more solid foods, you haven’t really been
digesting them properly. An hour after we give you something, it comes back out
basically exactly the way it went in. Chunks of banana or partially chewed up puffs end up in your stools. I know that can’t feel good. It’s like your
stomach and intestines are not breaking food down. This means that your body
would not be absorbing all the nutrition from the foods given to you. This
could be a reason that you are having very slow weight gain.
This past weekend you ended up getting a fever again on
Saturday night. It got up to 104 degrees, and I was tempted to just take you to
the ER that night, but I didn’t want to overreact. You had a really rough day
on Sunday as well. Finally yesterday morning when you still had a fever
hovering around 102 degrees I called the doctor. Your daddy had the day off
work so he took you to your appointment. Your doctor, again, couldn’t pinpoint the
source of an infection. Your weight was down to 17 pounds 14 ounces. You have
lost half a pound in the last two weeks. That may not sound like much, but it
is significant considering that you haven’t even gained a pound in the past
three months and now you’ve lost over half of the weight that you had gained. We
now have to track your fevers and see if we notice any sort of pattern so we
can report back to your doctor. We may be getting some blood work done in the
near future to do some further testing if these fevers persist.
The fevers along with the lack of proper digestion and
weight loss opens up some new concerns for us. It is rare that babies get
diagnosed with Crohn’s Disease, but I’m afraid that that is where we may be
heading based on your symptoms. Many babies who do eventually get diagnosed with Crohn's initially get misdiagnosed with food allergies or FPIES. Crohn’s Disease usually brings along frequent
and unexplained high fevers due to infections in the intestines. This is
initially very hard for doctors to diagnose since it is not something that can
easily be checked like the throat or ears. We need to further discuss some
things with your specialist and do some testing before any official diagnosis is made.
So this is where we are my beautiful baby girl. I hate when
you are not feeling well. Mommy wishes she could just snuggle you all day long
on your bad days. You are very resilient, though, and always seem to bounce
back with a smile. Mommy loves you so very much my little lady. Always and forever.
