Gideon’s Swallow Study Results

Faith & Hope

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So as some of you know, we recently went for a swallow study to determine whether or not Gideon was aspirating (inhaling fluids…milk/water…into his lungs) while eating. Many children with Gideon’s disorder require their liquids thickened because of this problem. Even though I was confident that he wasn’t aspirating, the information that this test would provide was necessary if we were to receive nutritional & feeding support through the Early Childhood Intervention program.

So we went to Medical City Dallas and found out, unfortunately, he is aspirating.

Two things about  this study. 1) It went SO much better than the GI test  and 2) Gideon screamed the whole time as he was being forced fed.

I tell you this because I think it’s important to note that Gideon only aspirated a small amount twice, within that 15 minute feeding session. I think that’s pretty darn good considering he was screaming!! Also, I think it’s worth mentioning that my son has not been in and out of the hospital with respiratory issues like a lot of these babies- which suggests to me that it’s not happening that frequently here at home. He’s a year old, never had any liquids thickened and (knock on wood) he’s never had lung problems!!

The concern about him eating arose in December, when Gideon officially started on a supplement called Betaine. This Betaine study is why we went to Omaha back in September. After being on the Betaine for about a week, we noticed that he stopped eating solids altogether and his intake of formula dropped by 2 ounces. We decreased his dose & stuck with it for a month because GI upset was a known side effect. When we stopped the Betaine, his appetite did not increase after a couple of weeks, so I agreed to the swallow study. This now allows us to receive help from ECI where his diet is concerned.

So his evaluation with the dietitian is this Tuesday and I’m anxious about her visit. Gideon is not taking the thickening of his liquids well. And we have these random shiny days where he anxiously eats solids…and then it’s back to formula all day for the next few days. The ups and downs are way high and way low, and frankly, I’m getting tired…. and a bit emotional. Especially where this thickening business is concerned. You need cross cut bottle nipples for that. Did you know finding cross cut bottle nipples in the stores here is like looking for Miley Cyrus at a church camp? I’ve been to four stores, one of which was Babies R Us, and NONE of them carried cross cut nipples!!! (That was a bad day and a whole other blog for that matter.)

So would you mind praying, yet again, for our son. I desperately want him to begin eating solid foods consistently again. And please also forgive my frustration on the matter. I knew having a child with special needs would be hard, but it’s all these small battles that seem to be weighing me down.

Most days I feel like I’m treading water so hard just to keep my nose above the surface.

Thanks for your prayers.

24 thoughts on “Gideon’s Swallow Study Results”

  1. So glad you can get out how you’re feeling into words. You are doing an incredible job!! The “usual/normal/expected” struggles moms deal with are minuscule compared to yours and you’re handling it with such determination, focus and grace. Keep going momma. You got this and keep your head up. Love ya lots and lots!

    1. Thanks Shana!! I so appreciate your uplifting words! 🙂 SO good seeing you the other night!!! Must hang out sometime soon!

    1. Thanks Terri!! And thank you for my card!!! You had tears all over my face!!!! 🙂

  3. I would love to be on the outlook for these nipples. I find myself in store quite often that have baby supplies.Is there a special brand, size, etc. you need? I know it is so frustrating trying to find specialty items. Hang in there!!

    1. Vicki, thank you! We actually did order some online (I should have posted that) but Gideon will only eat about 2 ounces with the cross cut nipples before he gives up. We are probably going to have to try a new bottle set altogether. Medla was/is his favorite bottle and we got nipples to fit those… so I don’t know what to do. He’s been sick the past week so I haven’t made him drink thickened formula anyways. The mucus in his throat is thick enough right now. 🙁 Thanks again for the offer!! I appreciate you! And I know you must be enjoying that new grand baby!!

    1. Thanks Tammy, I very much appreciate it!! We finally did order some online. 🙂

  5. Samantha, please know that our family is praying for you and your family.

    John 9:1-3

    As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned or his parents, but that the works of God might be displayed in him.”

    Hang in there!

  6. I had a preemie. He had to have his bottles thickened with nectar simply thick. We used dr. Browns bottles with the cross cut nipples. I thought we got them at Toys r us but I may have ordered them off the internet. They are amazing if you can find someplace to snag. Have you checked with someone at the hospital? They may could give you some suggestions! Good Luck!

    1. Thanks Kimberly! We actually ended up ordering some online to fit our medela bottles (since Gideon likes those bottles best).

  7. Sam try amazon for those nipple and try searching “y cut”. That’s where I got mine for my dr browns bottles a few years back.

    1. Yeah, we ordered them online finally after 2 sales associates couldn’t find any in their store.. 🙁

  9. I am happy to pray. I have Gideon and your family on my prayer list and am glad to have something specific to ask for! I also will pray for strength and comfort for you and your husband. I can not imagine the daily journey you walk. Bless you Samantha!

    Amy

  10. Hey Sam,
    I think about you and your family so often. I will be praying for both you and Gideon as I go to bed in a few minutes. Just Sunday afternoon I was having a hard time emotionally with Seth. Then I thought of you. What a rock! I understand the daily struggles and victories. In every day there are such moments of joy and devastating lows. This roller coaster sometimes feels more than I can bear. Can you imagine going through this without God?!? Anyway, I hope I can give you some small comfort in knowing there are others out there struggling as you do…you are not alone. God Bless.
    Beth

    1. Thanks Beth!! No, I cannot imagine going through this without Him!! I feel so sad for those who try to.

      I know you’ve got your hands full as well. I don’t know how you do it with four sweet babes!! You’re amazing!!

      Thanks for the prayers and support! 🙂

  11. Prayers are being sent up for your sweet baby and for your entire family!

    All moms go through the frustration with their children and the way you are able to handle yourself and project such confidence and strength for your family is amazing! Gideon is so lucky to call you mommy 🙂

  12. I am praying for you, Sam. I cannot imagine what you are going through. Hugs–

    I had a hard time finding cross-cut nipples–so I made my own. You can do this–you will figure it out. Very sharp knife, several nipples, and the strong-will (which I believe you have) to figure out what works for Gideon is all it takes! There also is a cereal feeder that you push thicker fluids through–IF you can find them. Walmart has them sometimes. Look on the internet.

    I know you are sick of listening to these you shoulds so I will shut up. I am lifting you up! Frustration and weariness is a horrible thing to deal with day to day. I will help if I can!

    Melissa

    1. Thanks Melissa!! We actually did make our own until the ones we ordered online arrived. Gideon is so strong willed. He hates his liquids thickened. So much so that we’ve gone back to not thickening for now… otherwise, he won’t eat at all. 🙁 We are working up to that amount a little at a time. Thanks for your input and prayers!! 🙂

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