Thursday, September 3, 2009

Neo Appointment

We haven't seen any real differences yet with the formula. Jimmie did have a big puke tonight though and unfortunately puked up his feeding tube. He was really hungry and very over tired so he was pretty hysterical as they put it back in.

He's handling his apparent cold well so far. The Neo listened to his lungs and looked in his ears and everything is clear. It's really just his nose and his throat that seems to have a lot of mucous. We think it's a cold, but it could possibly be allergies . . .

The Neo today encouraged Rachael and Justin to go forward with the endoscopy. She felt that after going over Jimmie's history and talking to Rachael that this whole thing being allergy related is a possibility. She feels that the scope would really give them a lot more information and direction. So Rachael and Justin are going to schedule the endoscopy for Jimmie. They have felt that they'll probably just keep hearing it's just reflux, but are definitely open to the idea it's allergies. If it was just be a simple allergy to Rachael's milk and the formula she has been using all this time as a fortifier that would be awesome because the Fundo G tube surgery would hopefully never be needed. There are even more expensive formulas then the one they are trying now that you need a prescription for to get. If the endoscopy points towards allergies the Doctors would really start working to find something Jimmie could eat.

The one reason we could see to hope that it is an allergy is that Jimmie's reflux did not happen until a few months ago. Right after he went off oxygen actually. Most kids with a defective valve in their stomach show that to be a problem from the very beginning, from when they first start taking all of their feeds by mouth. Jimmie breezed through that in the NICU and never showed more than very minor signs of reflux. He never acted like he was in pain or refused to eat. That's the ONE thing we keep bringing up. Is WHY would this start so much later and coincide exactly with him going off oxygen???

My mom shared with us her knowledge and understanding of food allergies and how they come about. It's usually when your body is under some type of major stress and having to work very hard. The food you are eating during that time enters your blood stream and your body overreacts to it. Or badly reacts to it. This is a very simple explanation the way I understood it. So mom hypothesized that perhaps when Jimmie went off oxygen his body went into overdrive and he didn't quite have the resources and strength for both efficient breathing (oxygenation) and digestion. So his breathing won and his digestion took the hit. One of the Doctors when Jimmie was in the hospital last week did actually sort of mention that this was a possibility.

We'll see . . . . Hopefully with the endoscopy . . .

Those cute videos I was talking about don't exist. I messed up. When I was taking them I was pushing stop when I thought I was recording and I was recording when I thought I wasn't. So they consist of the side of the bed and a lot of talking. My dad did that once when he was trying to shoot a video of Jimmie in the NICU. He was so bummed about it. Well dad- now I'm bummed and feeling retarded too. (-:

What I was trying to video for you all is a demonstration of Jimmie's amazing strength and his abilities he's not supposed to have yet. Rachael will hold him by his arms/wrists and he'll use that leverage to pull himself into a sitting position and then into a STANDING position! At around 10 1/2 lbs he just looks so cute and funny doing this! The Neos today were so amazed at his physical strength and development. How he lays on his stomach and holds his head up, how he rolls over and how pulls himself to sitting and standing. He also bats at his toys with his hands and feet. The Neo said, "he's not supposed to be doing this yet. He's supposed to be 3 months old. He's more like a 6 month old!" WOW Go Jimmie go!!!

And again always when someone new looks at Jimmie and his medical history they are amazed. Today the Neos went on about how amazing he was for a 24 weeker, how incredible that he'd never had a surgery, how miraculous his journey had been! We are so blessed and so thankful and I know Rachael and Justin love hearing that about their son.

Here are some pictures I took the other day when I thought I was also taking that video. At least I got some fun pictures right?? (-:

This is mom doing a TKM sequence on Jimmie while Rach was holding him. It's a bit awkward and tiring sometimes to apply these sequences to your patient when they are not laying on a proper table. But this is how Jimmie is worked on a lot of the time.




Look at those beautiful eyes!




I never thought I would see a baby that looked as angelic as my son. No not even my daughter was. 0-: Cole had the most gorgeous skin, beautiful eyes and perfect petite features. Jimmie is just as beautiful! I swear he is a GORGEOUS baby! I'm not biased at ALL! (-:


Thank you for your prayers!

Love,
Amber

P.S. My daughter is truly beautiful now. The prettiest little girl I've ever seen. Just so you know. (-:

6 comments:

  1. no, you aren't biased AT ALL! lol!! well, hopefully this cold will stay in Jimmie's nose(not that we want it stay, but you know what i mean...) i was thinking, we bought a massage table when i was pregnant with Gabby, and we don't have room for or use it much. If you want, I could bring it with me when we come out. I can just check it as an addtional bag and it would be lots cheaper than to ship it! But, if you want it, it's yours! Way to go Jimmie, you strong boy!! I think strong babies must run in the family! We have good genes! lol! Love you guys and will see you in 2 WEEKS!!!!!!

    ReplyDelete
  2. Way to go Jimmie!! Strong genes run through the Gravitts, too, so he must have a double dose. =) What a cutie, too!

    We're eager to hear how the endoscopy comes out. Hopefully you'll be able to get it scheduled for sooner, rather than later.

    We'll keep praying for all of you. We love you all so much!!!

    Lots of love,
    Adrian and Janelle

    ReplyDelete
  3. How encouraging to hear all those positive comments from the doctor about Jimmie's progress! The Lord and he have accomplished so much in the past, I know this problem will be overcome, too.

    It isn't just bias, Amber! That is a very cute baby, and his little personality just shines through in his pictures.

    We follow your blog daily and keep Jimmie in our prayers.

    Denise and Shannon F.

    ReplyDelete
  4. Jimmie is so handsome!!! This preemie mom is CA will continue to pray and follow his progress. I don't have any wisdom to impart...but I sure am happy that he's doing so well. Thank you for the update. Go Jimmie Go!!!

    ReplyDelete
  5. Ohhhh, I love those new pics of jimmie - what a cutie!!! He is sooooo...hmmm...what's the word...YES - angelic! Charming, handsome little man! And so strong! It is simply AMAZING how well he is doing! Still praying here for him and the family...when is his endoscopy going to be?

    blessings to you all,

    misha and fam

    ReplyDelete
  6. I would say that Jimmie is a bit of a flirt! What an incredibly beautiful baby.

    Rach, hang in there. I know it has been an arduous journey. I know you are tired and that lack of sleep can make you so depressed that you can't see the light at the end of the tunnel. I look at how far that little man has come and know what a great mom you are. Let others take care of you once in awhile - you don't have to do it all, and you most certainly are not doing it alone. Go get a great massage or a pedicure and take some time for Rachael. A spa day.

    As for allergies, Amber, I think your mom is right on target. I didn't really develop allergies until I was 2 - and had my first bout of pneumonia. I am sure that I was not the first failure to thrive kid, but I was pretty scrawny for years. And the allergies and accompanying asthma were a huge problem. And then they pumped me full of steroids and that made me susceptible to everything under the sun. My overactive but immature immune system would fight things off for awhile, and then nature would take its course and I would be sick. And not eating.

    Lots of kids with colds feel uncomfortable trying to eat or drink much. They want to sleep. Remember that sleep is healing, too. And a body at rest doesn't burn too many calories.

    It will get better.

    All of you are in my prayers.

    ReplyDelete