Well, for the past 2 months, today, December 7th, has been a magic day in the Mouw House. Today was the day we got to see our Pediatrician. We knew we wouldn’t get any answers to Zachary’s problems, but we were looking forward to getting one step closer. I’m starting to set mini milestones to help myself cope a little bit better with all of this (if I can just make it until his next appointment it will be okay). It doesn’t seem so overwhelming when I break it all down into smaller increments of time.
The appointment today was incredible. I prayed the whole car ride there (well, and pretty much every day over the last week) about this appointment. I then praised God the whole car ride home. His love just keeps on flowing and our faith just keeps on growing!
So first of all, Zachary did gain a few ounces since his 4 month check-up. I know a few ounces in 2 months isn’t much at all but it’s something. It tells us that he is growing and that he is, overall, a healthy boy. Second, the Doctor was onboard with us in the fact that something really is wrong. He no longer looked at us like we were over-reactive first-time parents that didn’t have a clue. He took us very seriously, spent a lot of time answering questions and brainstorming with us, and addressed many of our concerns.
The first thing he did was give us a referral to a Nutritionist. He said that no matter what is going on, the top of our priority list needs to be Zachary’s nutrition. If he’s limited by a long list of foods he can’t eat, we need to find things that he can eat that will provide the nutrients he needs to keep growing and a Nutritionist will be really helpful in getting us a good menu for him and possibly even for me.
The second thing he did was (drumroll please……) give us the long awaited referral to Children’s Gastroenterologist!!! He definitely believes that it’s very important for us to be seen by them, he does think they will want to do a biopsy and possibly a colonoscopy to figure out what’s going on but that will probably be a few months down the road.
So, we are jumping for joy tonight. We should hear tomorrow from Children’s about how soon they can get us in.
The Pediatrician actually does not believe Zachary has FPIES. He thinks that the likelihood of the protein from foods I am eating is being passed through my milk and causing such severe reactions is slim to none. Which means one of three things:
1) This is something other than FPIES
2) I am completely crazy in thinking that what I’m eating has anything to do with Zachary’s pain and that it’s just been a series of ironic coincidences that have led us to believe this
3) We are a severe exception to FPIES
What he did say, which is helping us have very realistic expectations about our appointment at Children’s, is that no one in the world is an expert on this subject. It’s a very gray area. We probably won’t ever get a definite answer of what this is. We are just going to have a lot of very smart people working together to help us get through it…. and, of course, one VERY powerful God.
I’m learning so much about food and babies… it’s incredible. Another blessing I’m counting these days is the fact that I have so much knowledge about food and what is going into my body. I’m using this chance to learn and educate myself as much as I can. I feel so much more knowledgeable about feeding my child than a lot of other moms out there probably are. I’m very thankful. The Doctor today said that there is basically no importance in feeding babies solids at this stage except to teach them how to eat. They have no nutritional need for it whatsoever and it won’t help in the tiniest bit with gaining weight or sleeping better. He reassured me that it’s okay to go slow with introducing foods and if he doesn’t start solids until 9 months he will still be just fine.
So here’s a tiny update on Zachary’s current condition:
Last night he had a single bite of my homemade apples. He had a pretty rough night of sleep and a terrible day today. I am always left wondering if it was that bite of apples, or if he’s teething today, or maybe just overly tired, or even going through a regular fussy baby stage. Most moms probably know all of their baby’s cries at this stage, and exactly what they all mean. I just can’t seem to figure it out. It’s exhausting to try, so since there has been no throw-up and he hasn’t seemed like he’s in severe pain, I’m going to press forward. I’m going to wait another 2 or 3 days and try another bite of apples. I don’t want to rule it out until I know for sure. It’s important that we get as many foods as we can on our “safe” list at this point.
As rough as the day was with Zachary, we’re praising God for the best possible outcome to today’s appointment. I’m resting in the peace that tomorrow is a new day, tomorrow will be a better day. I am no longer looking for an end to all of this, but I am looking for better ways of coping and adjusting to our lives with it.
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