My Face may be different, but my feelings the same
I laugh and I cry, and I take pride in my gains
I was sent here among you, to teach you to love
As God in the heavens, looks down from above
To Him I am no different, His love know no bounds
Its those here among you, in cities and towns
That judge me by standards that man has imparted
But this family I have chosen will help me get started
For I'm one of the children, so special and few
That came here to learn the same lessons as you
That love is acceptance it must come from the heart
We all have the same purpose, though not the same start
The Lord gave me life, to live and embrace
And I'll do it as you do but at my own pace

Jodie's Journey by Granny Engela!

Hello World - I am 20 months old!

Hello World - I am 20 months old!

Thursday, November 12, 2009

My call to the surgeon

I left numerous messages for the surgeon to call me, Jodie is still drinking (Hoorrray), although still coughing and the 4th set of neumonia not cleared up yet..... His assistant phoned me back today, we can remove the tube on Saturday or wednesday, we just have to pay the doc. PHEW... I am actually stressing, now I am too scared to take it out. It has been causing viral infections, and I think it's just a way of God showing us that it's time to take it out. Jodie doesn't do too well under anaesthetics as well so I guess I wont be sleeping for the next couple of nights.


  1. Hello! I just found your blog for the first time through Jaqui's blog. My name is Brandi (I think we have emailed through the listserv) and my son Nathan has RTS (18 mos. old). Your journey with Jodie has been so similar to our journey with Nathan. I am amazed at your faith and am so happy that you have such a great family to support you.

    I am not one to give "advice" when it is not asked, but my heart is beating fast and I feel I need to share my heart with you. I see that you are wanting to have Jodie's gtube taken out, rightfully so. As I look through her history of pneumonia it is so similar to Nathan's.

    When we were told that Nathan needed a gtube because of his pneumonias and aspirations we were angry. We said no, no way. We eventually gave in and had one put it in and reluctantly quit feeding him by mouth. I cried, screamed, and cried some more. I HATED IT! I was supposed to breast feed him by mouth until he was 12 months!

    Well, the doctors were right. His pneumonia's ceased (with the exception of one viral pneumonia this year) and he began gaining weight, sitting up, remained ear infection free, and gained control of his head. Nathan is now 18 months and has been eating all of his solids by mouth since he was 9 months old, but still gets his milk by gtube. Our realistic goal is to have him off of the tube by the age of three. Our initial goal was at the age of was not realistic.

    As I read Jodie's short history, my gut tells me that she is aspirating her oral feeds, that's why she keeps getting pneumonia. I know how important it is to you that she feeds by mouth, but it may be the thing that is hurting her the most. Have you consulted with a pulmonologist or gastrointerologist or a speech therapist that focuses on swallowing prior to scheduling her gtube removal?

    I am really going out on a limb by sharing this with you because once again, I don't give advice when it's not asked. The road with RTS is long and hard. Visiting doctors every week along with therapies is grueling. I am here to say that I have walked and am walking in your shoes and I am here to support what ever decision you and your family make. I just thought I should share our experience with you.

    May the Lord be with you and shine upon Jodie and your family.

  2. Out of everything the doctors told me the scariest thing was that "evil" feeding tube. I hated it!!! I remember pushing and pushing Alex to eat, and would be so happy when he would take 80ml, even if it took him an hour. He was aspirating, the scary thing is that he didnt cough it was silent aspiration, once we stopped feeding him by mouth the pneumonia went away, and has stayed away for good. The feeding tube is a hard one to come to terms with, and feeding your baby by mouth is so natural and we crave everything natural in our situation. I so get that!!!! The feeding tube is like a diamond in the "mess" of all this. Alex was NPO for months, but now eats most of his food intake by mouth. The tube isnt a NPO life sentance, it just keeps them healthy while they learn to suck swallow and breathe.
    Bless you right now, you are in the hardest part of this walk. We are here for you, all of us. We have all been there.
    So much love,

  3. I also wanted to add that Nathan's feeding tube has been gift from God because when he has needed medications, we have just been able to pump them through his tube and not have to get a needle poke. And...when he is sick, we don't have to worry about him wanting to eat or drink enough because we can put his nutrition through his tube as well.

  4. Hi Vickie! I'm so glad to find your blog and connect with you. Reading Jodie's story brought a lot of memories back of Natalie's first few months. I pray that you can find God's purpose for you in this experience. I too thought God gave me a terrible thing in having a daughter with special needs. But I have come to realize that it's part of his plan for me to learn what he wants me to learn...that I wouldn't have learned any other way.

    Anyway, hugs and encouragement for you! It's terribly hard, and the g-tube is shocking and gross at first. But like others have said, we come to appreciate it when we see how it's saved our children's lives. And the tube will eventually come out (Natalie's came out about 6 months ago), so it's not a life sentence of tube feeding.

    It's so great to meet Jodie. She's a beautiful girl and she's blessed to have such wonderful parents.

  5. Hi RTS mommies! It is so nice to have you in my life, your sweeties are really gorgeous, real little angels. Thank you for the advice, at this stage we need all the help we can get. In South Africa we have no support at all, I know of 8 RTS children here, hence we have now become the teachers to the doctors. Jodie is unfortunately getting neumonia due to her stomach contents pushing up to her lungs, fortunately this is not happening through her mouth. The only way this can be stopped is to re-do the nissen fundo, which my paed and the surgeon refused saying it could be fatal (which I agreed with). There is absolutely nothing we can do from the stomach back up, and the g-tube is causing more pressure in her tummy when I feed her. A friend of mine said we should get Motillium, but my paed advised against it saying it's not good for their hearts? I really look forward to being part of your families. Love and God Bless