Speech has returned...

I find this to be an interesting phenomenon.

We originally started teaching Xander sign language because we felt he was frustrated with his lack of ability to effectively communicate with us. He slowly picked up words but was very hard to understand.

As he started the process of starting his formula, we noticed that he rapidly picked up words. His babbles turned into toddler sentences literally almost overnight.

Brandon and I just looked at each other with disbelief. Almost every night we would lay in bed and discuss which words he said that day. But, a part of us thought that perhaps this was a coincidence.

When Xander first started showing signs of a reaction from this past Thursday night, we noticed that his speech was one of the first things to suffer. Friday, I don't think he said more than maybe 5 words. "No!" was a popular word that day. Along with "Han-Manny" (Handy Manny.) He spent most of his day screaming and crying. He was a pitiful sight. And I began to panic a bit at the thought of him regressing so much.

Saturday and Sunday some more words returned. But it still wasn't near the language explosion that we originally experienced when he first started the formula.

But tonight? Tonight, my little talkative boy returned. He was such a chatterbox. He held conversations with us. He repeated what he heard on the tv and around him. He recited his colors. He sang songs and named letters. He asked us to identify different things.

Now, am I saying that the reaction caused him to lose speech and the other formula cured him? No! What I am saying is this: Brandon and I believe that he was in such pain and discomfort that speaking was really the last thing on his mind.

Do you feel chatty when you have an upset stomach?

No? Well, neither does he.

I have to say, this whole thing has been very frustrating and discouraging. It is very difficult to feel like you can't safely do a very basic thing for your child such as feed them. It is heartbreaking to not be able to help your child feel better. These reactions really just have to wear off and only time can help that.

I've researched and honestly, I'm not finding much encouragement for the future. It is a hard reality that I'm really struggling with and haven't quite accepted yet. NO ONE can tell me how many safe foods Xander will ultimately have. A lot of the blogs of other FPIES parents only have a handful of safe foods. Food trialing takes ALOT of patience and time. I've only found a single case where a child was diagnosed this "late" and that child was completely tube fed. It's a lonely and frustrating place to be.

But for now, this is where I am. Of course, I'm still searching and hoping for help for Xander so that he has the best chance at a sense of normalcy as possible. You should see the list of questions for the allergist on Wednesday! This mama bear isn't going out that easy. But there is a small part of me that is starting to realize that this isn't going to be an easy or quick road and maybe I'll have to accept a long term, new normal.

God give me the grace and the strength.

~Stephanie

One Step Forward, Two Steps Back...

This morning I woke up hopeful. That hope was quickly dashed.

You see, last night Xander sat at the dinner table with us, and we enjoyed our first "meal" together since Xander was put on an elemental diet. His sad eyes looked around at our food and I almost had to excuse myself. But Daddy reminded Xander that his food was in his cup and gave him a high five and Xander drank his formula and then asked to go play.

It felt like we were finally moving forward.

And then this morning, I changed very upset little boy's diaper and saw a bleeding behind and diarrhea. I racked my brain trying to figure out what could have caused it since I was SURE that he hadn't gotten any food last night.

And then I remembered the "juiceboxes." Our allergist had sent us home with some E028 Splash boxes to try. Basically it is pre-mixed elemental drink. And we let him have two while we were on a long car ride last night. One was grape-raisin and one was orange-pineapple.

Womp, wooooooooooomp.

There is a very small population of children on elemental diets that cannot tolerate E028. And there is another population that cannot tolerate citric acid--- which the orange box contained.

Womp, woooooooooooomp.

So, now we get to notify the allergist about his reaction and see what she thinks.

I would so love to get off this ride. But then I think back to how happy and healthy Xander looked when we had things under control. He was so different! And I get back up and put one foot in front of the other.

Anything for him.

Tearfully,

Stephanie

The Smack of Reality

Day 3: (Christmas Eve) Xander only drank 1.5 cups before he went to bed. I was greatly disturbed by this so we jumped at the chance to give him a cup when he woke a little after midnight. That brought his total up to 2.5. Still not 3 but better! We figured he was just distracted and a little out of sorts since we went to Christmas Eve service at 5pm. He did not scream in the car at all, even after we drove across the river so Brandon and I could find where I have to be on Tuesday. It is a hospital unfamiliar to me and I'd rather wander around with my husband. We programmed the entrance into the GPS. I just have to remember to take toll money. (Gotta love tolls!) He didn't have any dirty diapers... I can honestly say this has never occurred in his life.

Day 4: (Christmas Day) So far he has only had 2 cups. We are praying that this isn't a downward trend. :( We are hoping that maybe we can get him to drink when he wakes during the night. I spent much of today fighting back tears and a lump in my throat. I know that the extra hormones aren't helping a bit. I think I got a little ahead of myself thinking about the future. For example: it is almost birthday season here. If we are still doing formula only, he will not be able to have birthday cake. Simple things like going out to dinner to celebrate things will be a cruel reminder of what Xander cannot have. I don't know-- maybe I'm just overtired and overstimulated with the holiday. It was just a very hard day for me. I had a little cry and now I feel a little better. Still totally overwhelmed with the unknown but a little better. I am very thankful that he has had no diarrhea and no diaper rash.

We have some new prayer requests today:

1. That Xander drinks at least 24 ounces every day.

2. Tuesday we are to call the allergist with the results of the first 5 days. Pray that we can convey our concerns in a way that is easily understood.

3. Xander has a small case of the sniffles. This could cause the MRI to be cancelled since he has to be sedated. Pray that we get clear answers so that we can prepare ourselves accordingly. We so badly want to know if there is anything found on the scan but we also want his scan to be done safely.

I pray you had an enjoyable day celebrating our Savior's birth. We sure did.

~Stephanie

Poop Chronicles: Elemental Formula Trial Results Day 1 and 2

Photo Credit

Appointment Day: Xander drank one cup of chocolate formula for dinner after we got home from our appointment. He seemed less than impressed.

Day 1: Normally he would wake with a terrible diaper. This time it was different. Not completely normal but much different than what we were used to. He drank 4 cups of his formula today-- 2 Tropical and 2 Chocolate. This evening he had a dirty diaper that was NORMAL! I seriously had to check which son I was changing! Overall today, he wasn't doing his blood curdling scream. He used more words instead of screaming. He looks more relaxed and didn't fight me when I changed his diapers. He actually didn't even ask for food except for when he saw Solomon munching on a pretzel. Part of me wonders if he already realizes that food was hurting him. He only had 2 dirty diapers total today which is a marked difference from 3-7.

Day 2: When he woke up he was only wet. This is a marked change. He only drank 3 cups of his formula today, but I'm not supposed to worry because that is enough to maintain his weight. No blood curdling screaming. He did fuss quite a bit today but I think that is related to him not understanding what is going on. He sat at the table today and colored but he now refuses to sit in his chair. (We took the front bar and crotch bars off of the highchair to make it more like a toddler chair.) I guess he figures if he isn't eating he doesn't need that chair. Before all this though, he was starting to want to sit in the other chairs like his big sisters so maybe I'm reading too much into that. Only one dirty diaper today and not diarrhea. His tummy looks less bloated too. He did not ask to eat at all.

We are not asking him to sit at the table while everyone eats. In fact, I've been taking him in another room and allowing him to watch Handy Manny while he drinks his cup. Making him sit at the table while others eat just seems cruel. By the time Handy Manny is over the children are usually done eating, so he goes to play and I eat my dinner in another room away from him. Again, we are struggling with a lack of normalcy. Mealtimes in the past have been our reconnection times. We used to all sit together and talk about our days.

The formula smells very nasty and is doing a number on my morning/all day sickness. We are going to buy a mixing pitcher and have Brandon mix it at night so that I can just pour cups.

We have a few prayer requests:

1. Neocate Junior costs about $35 a can. That lasts almost two days when he doesn't take the four cups every day. Quick math says that it will be at least $525 a month. This is more than we budget for groceries, or our van payment. Seriously, OUCH! Our doctor is working on having our insurance cover it. Other families have warned us that because he is taking it by mouth, not by tube, that they may reject the claim. We are praying for the claim to go through without a hitch. Our insurance has pleasantly surprised us in the past. We are hoping for that to be the case here too. In the meantime, our doctor gave us samples while she is trying to process our insurance.

2. Xander's MRI appointment has been moved up a little. He was the third case on Tuesday the 27th and one cancelled so we have to be there at 8 am instead of 9. I'll be by myself since Brandon is in training for his new company. Please pray for us. I don't tend to do too well waiting, even when Brandon is with me. I've been warned he may be back for up to an hour. Also a friend of ours is keeping the other three. Please pray that they are well behaved and mind their manners. Also pray I get to where I'm going on time and without getting lost. I'll be living in my van that day between taking Brandon to work, dropping the 3 off and then going across the river to Xander's procedure, then taking the discs to the doctor's office, then picking up the kids and then picking up Brandon.

3. Please pray that we are able to enjoy Christmas. I don't want all of this to eclipse the celebration of Jesus' birth. God is our strength and rock and if anything this trial should magnify Him, not minimize Him.

I pray you are enjoying your Christmas Eve with your family as well.

~Stephanie