Sunday, October 4, 2009

Sweet Potatoes

Jimmie LOVES Sweet Potatoes! Rachael tried those on Friday evening and he was so excited about them. He ate half the jar! And ever since whenever she feeds him sweet potatoes he eats really well! She even mixed a little with his rice cereal which caused him to eat more of his rice cereal then ever before.

We are cautiously encouraged that Jimmie seems to be proceeding fairly normally with the eating solids by mouth. However he still refuses to drink anything for the most part. He's still so young and small that he is getting most of his nutrition through Rachael's breast milk. So we really want him to start drinking. It doesn't have to be from a bottle- in fact Rachael hasn't tried that in while she is primarily using a sippy cup and she still offers him her breast every so often as she has done this whole time.

Rachael is encouraged about him eating solids, but is still concerned he won't drink. In order to get rid of that tube in the near future Jimmie needs to DRINK.

On Friday Rachael took the information about the Graz Clinic (a tube weaning clinic in Austria) to Jimmie's Pediatrician Dr. S. She explained how in order to do their email coaching program she had to have a Doctor sign off on it. She also shared with Dr. S. her concerns that Children's Mercy has not as of yet presented her with a realistic and serious tube weaning plan.

Dr. S. was completely supportive and "on board" with Rachael's thinking on this. He said that before they do the Graz Clinic he would see if they could get a satisfactory plan and some help from Children's first. He is going to call them himself and speak with them about it. He also personally knows a Doctor that got a bit fed up with the feeding clinic at Children's who struck out on his own in that area. If Dr. S. and Rachael feel that after given another chance Children's is not on the same page about this- then Dr. S will contact this other Doctor. And if all of that fails he will gladly sign off on the email coaching program from the Graz Clinic.

Rachael was happy with this plan and feels relieved and supported in her feelings about all of this, so that is fabulous!

Rachael is very grateful to Children's Mercy. All of the tests they have run have been very helpful in determining that now that Jimmie's reflux is under control there is nothing else wrong with him. There is really no reason why he should not be drinking by mouth anymore. He is just psychologically dependant on the tube. He still remembers and associates all of that pain and discomfort with drinking liquids. Unlike many other micro-preemies who end up on a feeding tube long term- Jimmie has never had a surgery! He is not a candidate for a Fundo. He has not had any health problems other than reflux. He has never had an infection in his lungs or a problem with his bowel. No eye surgery. No heart problems at all. He was only on the ventilator for 5 days initially and then 5 more a month later. He started out breast feeding and bottle feeding with no difficulty whatsoever. Rachael feels that Jimmie should NOT end up on a g-tube. He needs therapy and a good solid weaning program to get him off of this tube.

Yet Children's has mentioned the possibility of a g-tube. Rachael feels they are operating out of habit and that everyone involved should try much harder to get Jimmie off the tube before they resort to that. As I said- Dr. S. is in agreement with this and is going to be Rachael's advocate. Lets pray that this works out with Children's! The Graz Clinic would most likely cost Rachael and Justin A LOT of money. Rachael doesn't care about that, but it would sure be nice to be able to get weaning help from someplace that their insurance will cover.

I got to hang with Jimmie a couple of times in the past few days and that boy is craaaaaazy! When he is awake he just goes wild. You can hardly hold on to him. He is standing, thrashing, kicking, wallowing . . . All the time smiling and yelling. When he starts crawling and walking Rachael and Justin are in for some fun times. I think they'll need a padded room. I predict he'll be extremely active. Probably running, climbing and getting in to everything!!!

He also has quite the little temper. I put him in his car seat when it was time for him to go and he was so mad about it. He was not crying just yelling. (-:

He is absolutely the sweetest most beautiful little boy. I will never get used to those dimples. Every single time he smiles and those dimples pop, my heart jumps at how insanely CUTE he is!

See for yourself!

video

More from the cute carrot eating session!









Don't be fooled by my size- INDEED! (-:






I have more cute pictures where those came from, but I'll save them for the next post.

Thank you as always for your love, support and prayers!

Love,
Amber

8 comments:

  1. love the pictures! i miss jimmie! he was "way too cute" as Cole says! lol! well, i am so very thankful that Dr. S is on board with the Graz clinic. That's great! And, I am glad that Jimmie likes sweet potatoes! Not Maddy, she puked them up all over me. I won't be trying those for awhile! ha! love you guys lots, and thanks for the Jimmie fix!

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  2. YAY for sweet potatoes!! He is so cute in that exersaucer. He certainly has a lot of energy, and that's great! We'll keep praying for your wisdom and that of the doctors. It sounds like you have a great pediatrician, and that's quite a blessing.

    We love you all. Kiss those dimples for us!!

    Lots of love,
    Adrian and Janelle

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  3. Came across this blog through a friend of mine. Our sons were born at 25 weeks and one is still on O2 and G-tube fed. We are actually looking at a program at St. Mary's in New York that we've heard great things about. Our son is orally averse and will not take anything by mouth. We've talked to another family and hope it works out. Just thought I'd pass the info on.

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  4. OMG!!!! Jimmie is growing and thriving so well. All I can do is smile and giggle at the video. Justin/Rachael get ready for some really fun times and busy days. God is so good all the time:) Jimmie is so expressive and a very happy baby, I just LOVE his smile, it can light up a dark room and those eyes so pure and innocent. You two are truly blessed!!! May the Lord continue to bless your little family. Many blessings and much luv to you all...

    Mrs L Williams

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  5. Are they sure that there isn't something with her breat milk that he isn't taking the liking to? Do you ever think about goats milk on his great grandma's side of the family they had to resort to that for a great uncle and a second cousin and it really worked. I think it has a little sweet to it. I would think that it wouldn't hurt to try. Just a thought.

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  6. What a cutie!!! Jimmies sweet face makes me want another...oh boy.
    Keep up the good work - all of you (that goes for you, too, Jimmie).
    We coninue to pray FAT, HAPPY, DRINKING prayers!

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  7. So so sweet!!! Jimmie is adorable! God is so good - Thank you Jesus for this little amazing boy! I'm so happy for you guys, how exceptionally well everything turned out with Jimmie! Look at him, he is soooo funny on the pictures, cute, strong and healthy - like nothing ever happened to him! And yet, he went through waaaaay too much! So inspiring. He will get through his eating issues as well! I believe so. You guys are so determined - Rachel - Jimmie could not have a better mommy! You rock...and you inspire us moms so much! Glad to hear Dr.S is on board with you! Can't wait to hear more about what they will say/do at Children's Mercy.

    Still praying here...LOVE,

    misha

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