Grady is now almost 20 months old and I'm wishing I would have blogged our experience from his birth till now. It's been nonstop. Literally one thing after another. By the time we catch our breaths from the previous crisis, we turn around and there is another one coming. It's like being in the ocean and the rip currents are beating you down one after the other. If you don't get out, take a break, or call for help...then you're going to drown.
And that's where I am. I'm drowning and I have been for quite some time. And for the (atleast) 10th time in this process, I'm calling for help. I'm grasping at every straw I have left. I'm desperate for a break.
Very brief back story. 11/4/14 our angel was born. Healthy baby, healthy mom, natural delivery. After thr first week or so, we knew something wasn't quite right. I was making so much milk that I was pumping before and after Grady's 2 hour or less feeds- and he nursed for more than an hour. So I literally was sleeping none. I did this for 4 months. Why was he nursing so often??? We were told it was normal.
Covered in a red prickly rash. We were told it was normal. Spitting up all the time and staying awake for 8-9 hours sometimes...we were told it was normal.
His gas smelled like sulfur. Straight sulfur. Literally burn your nose hairs. We were told it was normal.
He would get extremely overwhelmed after about 10 minutes of someone talking to him or people talking in the room, etc. We were told...this was normal.
Fast forward to 6 months. He got his normal vaccinations. It went AWFUL. He got very ill. Projectile vomiting and up every 10 minutes at night.
Then. He was diagnosed with a tongue and lip tie (after my milk supply went in the toilet due to a medication). Thank you Lord for the blessing in disguise of my milk supply dropping and seeing our precious Lactation consultant who will always have a special place in my heart.
In between these events...Grady had his first FPIES reaction. His 4th time getting avocados. He vomited till he went into shock about 2 hours after consumption. I called 911 because he was non responsive. After emergency crew arrived we were able to get him to respond and we were sent to ER. They diagnosed us with a virus. Told us there was NO WAY that was an allergic reaction.
Two weeks later we saw an allergist who told us we were crazy and there is no way our son had FPIES. He sent us home that night to start food again. That night we had our 2nd trip to the ER with our 2nd FPIES reaction to peaches.
We switched allergists and they told us they knew nothing about FPIES and sent us home. I researched, researched, studied, called, emailed every person and thing I could get my hands on. I pleaded with people to listen to me. I knew our son had FPIES. I just had to find someone to listen.
We had his lip and tongue tie release done that same month, July 2015. I removed all major allergens from my diet. He skin tested positive for multiple major allergens. We had to force feed him formula for one week until I could get my milk "clean" of dairy and eggs. He had never had a bottle before...it was horrible.
I found a test called an MRT. It was a blood test which would show us foods that Grady was most "reactive". These foods caused him the most inflammation. It was a place to start and we were desperate for answers.
So, because Breast milk was his only "safe" food...I was put on a diet consisting of beef, pork, coconut, oranges, grapefruit, and buckwheat. That was it. That was all I could eat. My poor husband would have to come home every night and grill me a hamburger or a steak. It was ...insane.
After months of eating like this, we did see some healing in Grady. He started to be able to handle more activity and acted a lot less overwhelmed. His sensory issues were improving. He was happy. We heard him laugh for the first time. He started sleeping a 2 hr stretch. He wasn't up all night long wired. He fell asleep in his carseat for the first time. Improvements.
I started losing a lot of weight and I was TIRED. How long could I keep eating like this? How long can I afford to eat like this? Will we ever find a doctor that will help us?
Finally we got an appointment with an FPIES specialist in Dallas on Grady's 1st birthday. Best birthday present ever. We were encouraged to start Grady on Neocate Jr, a formula that we could trial to get him off Breast milk. And we were given a plan about food once we passed the formula. We felt hopeful.
I got to eat pizza at Grady's 1st birthday party. I knew once I ate dairy...I couldn't go back. No...it's wasn't easy to quit and trust the formula was going to work but we had to start somewhere. We finally found a flavor of the formula that worked but he would only take 2 oz at a time and only if distracted by the TV.
We got his 12 month shots...and he got VERY sick. We were starting to see a pattern. VERY ill. Lost a ton of weight.
Why are vaccinations killing my baby????
We had been seeing an Occupational therapist for Grady's sensory issues but there was nothing we could do until he started eating. So, we started seeing a therapist for eating issues after that.
We slowly started trialing foods. He loved it. We've had many set backs and are still having set backs with food. But we take our time and try not to rush anything.
We started seeing great improvement. He loved eating and we LOVED watching him. We worked with a speech therapist. He started sleeping better and was much happier. He gained weight beautifully.
Then, March 2016 he got very sick. Really sick. His blood work was really bad and we were admitted to LSU. We were told he might have leukemia. We were devatated. After 4 night and countless number of tests, we were told it was most likely a bad virus but Grady might have some immunity issues.
We have not gone to church more than 5 times in 20 months. We are church goers. We went every Sunday before Grady was born and we served...a lot. Now...nothing. our baby can't go in the nursery.
Between immunity, food, or pure sensory overload...the nursery is a nightmare.
In the last 3 weeks we miserably have failed multiple things. Acid diaper, vommit, sleepless nights. Whatever the outcome...it's been hell.
We know this is a season. We know this won't be forever. We LOVE our son unconditionally and wouldn't trade him for the world. We are so thankful to be his parents and we couldn't imagine this life without him (seriously what the hell did we do before him?). But...we are BURNED OUT.
Our marriage has suffered so much. We know this is a season. We know we will make it through anything but we are tired of not being us. We want to go out. We want to worship together in church. We want to serve together. We want to be us again.
I've been without Grady...maybe 5 times...in 20 months. Whether is was low milk supply and he nursed every 1.5 hr or no one qualified to keep him or him only taking the bottle from me or whatever.
If you are a Mom...and your kid has FPIES or whatever other kind of horrible disease. I get you. You feel alone. You feel so frickin alone. No one understands. And you blame them for not understanding and yet you dont. How can they understand? They have no flippin clue. You want to be normal. You want to just drop your kid off at the nursery and let them cry like the other kids without them having a sensory meltdown. You want your kid to eat pizza with all the other kids at a restaurant. You want to not have to watch your kid like a day hawk to make sure he isn't eating whatever off the floor. You want to not want to punch other moms in the face when they say they are tired. I get it. It sucks.
And I know the answer is cling to Jesus. He is the only one that can fulfill us. And I know that even feel impossible. You have nothing left to give. And you don't have to give anything to Jesus because He already gave fully for us. We just have to allow Him to have our hearts and our minds. And He knows that sucks. Giving your cares to Jesus doesn't mean you can't still be upset as hell about all of this. He is too; He is crying watching His children suffer. He is for us, not against us.
So I leave you with that. And I leave you with the fact that there is hope even though we can't live a "typical" life. Even though we are alone in the worldly sense- we aren't alone. Jesus is holding our hands through this crap. And He will eventually heal our babies one way or another.
So hold on. Take a deep breath. Take it minute by minute. Crisis by crisis. Try to find qualified help. Learn to selfcare even if it's only for 30 min. That's what is killing me- selfcare. You have to take care of yourself so you can care for others. Sigh.
Prayer Request:
1. Meeting with an SLP on Wednesday as a potential babysitter. Pray she is a good fit, we feel comfortable, Grady likes her and the dogs like her.
2. I need to selfcare weekly for 30 min or more.
3. Grady trials wheat July 11th.
4. Prayers for now more crisis situations.
5. Prayers for peace, rest, and health.
