What a day. Zachary’s appointment was at 2:30 in Federal Way and we just now got home (7:00 pm). We are very exhausted and emotionally drained. The appointment was less than we expected but we are still calling it a “good” appointment. I think once everything settles in a bit more and we’ve all had a good night’s rest we’ll feel much better about the information we received.
The day started early, we wanted to get down to Federal Way and give Zachary a “car seat break” before heading to the appointment. We picked out a special friend for Zachary to bring to his Doctor’s appointments.
His name is “Peanut” which we thought was perfectly ironic, considering Zachary can’t have nuts. Zachary loved him.
Our hope is that Peanut can continue on the journey with us, no matter how short or long it ends up being.
Well, on to the news from our appointment.
After discussing everything that we’ve been through and all of Zachary’s symptoms with the GI Doctor, he said his first instinct is that Zachary has a Milk Protein Intolerance (MPI), which is basically a blanket term to say that he is allergic to everything. (Not a huge shock to me who eats the same 3 meals every single day) The Doctor does think that FPIES and EGID are both still on the table though. By definition, MPI, FPIES, and EGID all are just about the same thing. The major difference is the amount of time he would have to live with whatever he has. The reason the GI is leaning towards MPI is because of the number of foods Zachary is allergic to and because blood in the stool directly indicates a milk protein intolerance. Unfortunately, at such a young age, even a biopsy wouldn’t give any real insight to what he has, because all 3 of the diseases would just show a food allergy in a biopsy result.
So, the game plan is this: Breastfeeding is no longer an option. Because Zachary is obviously allergic to protein, and I naturally produce protein, all of this could come down to the simple fact that maybe Zachary and I are biologically incompatible when it comes to breastfeeding (a tough pill to swallow). So, we got a prescription for an Elemental Formula and we are going to give it a try. As mentioned in previous posts, this type of formula is extremely foul tasting, so we have to mix small amounts in with breast milk and gradually increase that amount of formula over the course of 4 weeks until he is strictly on formula. At the 6 week mark we are going to head back down for a follow up appointment to touch base with the Doctor on how Zachary is doing. Obviously there is a chance that the formula won’t work, but the Doctor seemed hopeful that this could solve all of our issues. He also seemed hopeful that whatever Zachary does have, it IS something he will eventually grow out of. It could be 6 months and it could be 6 years, but the fact that Zachary still is growing and developing at a normal rate tells us that he can overcome this.
We also are not able to give Zachary any solids, and may not be able to for many more months. But we will get more information on that this Friday when we head back down to Children’s to speak to the Nutritionist.
My heart is heavy. Up until this point I have done everything I can to adjust my diet to meet Zachary’s needs. I would (obviously) give up anything to breastfeed my child. But, things seem to keep getting worse. This last week has been tough for us. He hardly sleeps. He has had a couple “okay” nights but mostly, we are up all night with him. Eventually Nathaniel or I will get him to fall asleep with us in the rocking chair, but even on us he continues to wake and cry. He has been in a lot of pain. I would give up anything to make him feel better. Including breastfeeding.
In a small way, we feel like we moved backwards by adding more possibilities to the list of what’s going on. But in a big way, we are happy that the information we got was so positive. With or without a diagnosis. And, we are still holding on to the hope that Zachary will be healed by the hand of God and will live a normal life, free from pain.
We were very impressed with Children’s and did have a wonderful experience. The Doctor was sensitive to our feelings and the road we’ve been on. He also reinforced the fact that I am not doing Zachary any favors by breastfeeding him if I am not able to get all the nutrients we both need to survive. Unfortunately (for me anyway) Zachary will do a lot better on formula… if we can find one that works for him.
If the formula thing doesn’t work, we will then go in for a biopsy to see if they can find something else in him that is causing the issue. But, we are staying positive that this will work, we are focusing on one day at a time, and we are leaving it in the hands of God. So for now, only one peanut for my peanut: