Quick Update: facts


The nitty gritty…..

The doctor’s initial reaction upon seeing Grady was she could tell Grady looks weaker and tiny. He has lost 1.5 pounds. After reviewing with her all my observations, feeding habits, puking episodes, diets… I then shared with her my suggestions of dietary changes, elimination diets, possible enzyme and probiotic intake. I pulled together all the information and research I had done with all of your experience and put it out there. She informed me that none of these seem like solutions as it looks like the motility of his inner workings are working too slow or not working properly (forgive me for lack of medical terms, brain overload)

Her solution, either I try Reglan for 7 days (this assists in the stomach emptying process by speeding it up so it empties quicker) and try to supplement with pediasure or she wanted to admit him to get a feeding tube next week if that fails to help him gain. Say What? Tubes? So from what I got, I have one week to figure this out and get him to gain weight before they want to move forward with feeding tubes. Then we will see the results of the scope next month, along with a few more blood tests (that we are doing tomorrow) she feels the next step is a fundoplication. surgery. Say What?

Mind you I have taken so many good pieces of advice from all of you, friends and fellow DS mammas close to heart.  Like you I find this to be pretty aggressive but also know that he can’t go on losing weight like this, it is really digging into his therapy sessions and his development. I am feeling the need to at some point before moving forward with tubes, obtaining a second opinion with another hospital (better than Colombia?)

SO… I took the prescription but have yet to use it, BECAUSE….

On my way home I stopped at the food store, stocked up on everything healthy and fatty that I could think of.

Monday night :Cooked Mac and Cheese, Avacado and Pees for dinner, and for the first time he ate big boy food, not crushed, mashed or minced. and PRAISE GOD, didn’t GAG….Straight up whole noodles and he didn’t spit up after dinner. Breastfed him and put him down for bed. SCORE

{my heart was so happy thinking of his body soaking up all that food while he slept.}

Breakfast this morning: Farm fresh eggs w/ cheese, Pancakes, fresh banana and peaches… GUESS WHAT… no spitting up afterwards! I breastfed him shortly after breakfast and he fell asleep for his morning nap.  Typically he spits up atleast 30 times after breakfast! This was huge. SUCCESS

Lunch came and he had noodles, pees, rice pudding and again no spitting up, I then gave him some pediasure in a cup, that triggered his spitting up and we had an episode of about 5-10 spit ups in a row. I bathed him, and then breastfed him and he went down for his afternoon nap. No more spitting up after nap!

Dinner: Hummus and fresh carrots, spaghetti’o’s ….then breastfed him and put him down for bed!  NO Spitting up!

I cancelled all therapy this week, cleared my work photography schedule and am giving little man extra special care until we figure this out and can keep on truckin on!

At this point, I haven’t given him the Reglan… I think whatever I am doing is working. I think.

I have a full menu planned for tomorrow for Grady, no more purees and baby food!

I believe your prayers are working. Keep praying that the simple process of eating real food is holding his belly down and he is soaking up the nutrients. Tomorrow we go for a slew of blood work at Colombia and a check up with the Endo.

My day had so much more to it on Monday that I want to share with you, It was a crazy day all together…all that I plan on sharing with you tomorrow, Including an Incredible encounter while leaving the Dr’s Office on the verge of breaking down in tears. God Winked, BIG TIME. Stay tuned.

As I lay my little boy down, I softly laid my hands over his belly. I prayed over him in HIS name, I prayed healing and calmness for his belly. It felt right, I felt covered.

He is faithful. Always.

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13 thoughts on “Quick Update: facts

  1. Ilisa Ailts says:

    Wow, I have goosebumps! So maybe foods in jars are too acidic or something???? Praise God and yes, he cannot loose weight 😦 Your broken heart. Good news Erin. Go Grady Go!

  2. Heather says:

    Reading this is bringing tears to my eyes! I’m so happy that Grady is eating so well! Follow your Momma instincts and do what God is leading you to do! Yes God made people with the brains to figure out medicine, and I am all for taking medicine when it’s necessary. Doctors are smart and we should listen to them, but sometimes Doctors don’t know everything(like, for instance how AMAZING our creator is!). I am so so so happy for you guys. You are an amazing Mom and I am so glad God introduced us! 🙂

  3. Tara says:

    Hang in there Mama! Grady is in my prayers! I’m just smiling…picturing him eating a cheesesteak and onion rings! Love from one T21 mommy to another!

  4. jodi says:

    Yay Grady…my little man is just like his momma…..he is a fighter and will do it his way…well for now its momma’s way…. I will pray for him …I know this sounds a little out there but did these dr.s even consider that Grady is much more active then before and will be using up way more calories.. don’t let those doctors convince you that this is what he needs..ugh the thought of a fedding tube…. you are so on the right track…. more calories and pray…I know Reglan does wonders for pregnant moms and also when I worked in pediatrics I saw a few kids do well on it… right now moms regimen seems to be working….I love you guys so much and love you to pieces… I’m giving you a call right now…

  5. Melissa says:

    I’m glad that your home cooking seems to be doing the trick! I pray that is the answer you were looking for.

    I’m always concerned when I see drs rush to extreme measures. No, it’s not good for Grady to be losing weight and different things need to be tried, but to suggest a feeding tube before trying other seems seems excessive. My nice is a year older than Claire and only weighs 1 lb more than she does, yet no one has ever recommended a feeding tube for her….

  6. Anna Theurer says:

    Hi Erin, got to thinking. . . has Grady ever had a GI series (ie barium swallow study) or an endoscopy or tested for celiac disease? Ellie Bear had the barium swallow and it showed reflux way back and a possible vessel anomaly (they assumed it was a variant subclavian artery but not sure. . .either way not related to her GI issues). We thought Zegerid was our “miracle” drug, but it only lasted for a few days. Her reflux is worse so now they want to look at her esophagus–endoscopy. I imagine the docs have done these tests on Mr. Grady before recommending feeding tubes, etc. If they have not. . . then perhaps it is time to find a different doctor. Praying that Grady gains weight and no extreme measures are needed.

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