28 March 2013

G-tube good food


That moment when Liam does something new and the therapist gets excited about it and I feel guilty because they don't know we did stem cells. =)

I'm trying to get my hiney in gear and get Liam off of his formula. It's Nestle Compleat. I have been thankful for it these past two years but the past few months it has really started to concern me. For several reasons I don't think it's wise to continue Liam on it.

  1. Our diet is not meant to be the same food day in and day out.
  2. The second ingredient is corn syrup. Eww.
  3. Transitioning to home made foods can decrease vomiting and reflux.
  4. It's healthier.
  5. I feel compelled to provide nutritious food for Liam like I do my other kids even though he doesn't eat completely orally. And now feel guilt that I haven't changed it before now.
I just can't imagine eating the same food day in and day out and how I would feel. I would think my body would be sluggish and aching for something new.  I asked Liam's ped what she thought about the second ingredient being corn syrup. She didn't think it was an issue and said it was no different than having a corn based diet. I don't think anyone eats that much corn based products. And knowing that a large protion of the corn grown in the US is gmo, it makes me uneasy about the corn syrup. The first ingredient is water, the second is corn syrup. So, out of the 40 ounces of food he gets each day, the percentage of corn syrup is pretty high. A friend of mine has their little one see a chiropractor regularly. She said the chiro knows when her daughter has had a soda. I don't know how that chiro can tell, but it got me to thinking about just one soda and it's obvious for her what it's like for Liam getting a diet of mostly corn syrup.

I have heard from other parents who had kids that vomited frequently and/or had reflux see a large decrease in those issues once the diet was switched off of commercially produced formula. Even if that was the only benefit it would be worth it to switch Liam. His reflux has gotten better and his vomiting is in smaller amounts as of late, but sometimes he cycles like this so I don't know if this is a permanent change or we will have the reflux monster show up in the morning. But, getting him on natural, healthy foods where I can add supplements for digestion have to be better than what we are doing now.

While the formula has been great for us for convenience and has been touted as a great formula for Liam, I think we are finally at the place and time where it needs to go.

I'm praying we will be able transition smoothly and make this a positive, much needed change for his diet. Cuz, I don't need more mom guilt!

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19 March 2013

What do we see?

I know everyone wants to know if we've seen any changes in Liam but I've been hesitant to say anything just yet. We are not even 4 weeks out from his stem cell treatment and only 3 days out from doing a round of 25 hyperbaric treatments.

Through his eyes.
It's hard to be objective as his parents and therapists (those that know) because we are looking for the changes. We are looking to see if any little thing is different. And I think that's perfectly normal. We desire to see changes in him and that's what we did all this for. At the same time, you want to make sure that you aren't just imagining that he's doing something new and attribute something to stem cells that isn't from that.

However, we ARE seeing changes.

They are hard to describe to someone who isn't fully familiar with the exercises we do or who hasn't seen Liam in person. We can see the changes because we work so closely with him. And while yes, we are looking for them, these are still definitely NEW changes.

The biggest sign that things were clicking differently for Liam was when I noticed him holding his head up a bit better when I held him in a sitting position. He also started to hold his head in the air when I put him on his hands and brought his head up. However, one of the biggest signs was today when our aid was working with him in his stander and she said he would hold his head up against his head rest for 2-3 minutes at a time without dropping it. She said he was like a different kid- less gagging, less dropping of his head and better stability.

He also planted his heels and pushed himself on his scooter board yesterday.

These small things are things he has never been able to do before.

I did not tell our private therapists that we did the stem cells. Our school therapists know, but I kept it quiet from our clinic in order to see if they will be able to objectively, with out any bias, see the changes in Liam too.

I am so excited for the changes we've seen in such a short time out from having the stem cell treatment. These are exciting days for our family. I thank God everyday for what He is doing for Liam and I thank Him for all of you too. I can't wait to report more to you as we go.

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04 March 2013

A few photos from the trip

I haven't had a chance before now to post pics* of our trip to Santo Domingo. As soon as I got home it became a rush to get get things done at the house, preparing me and the family for Liam and I to be gone for 2 weeks. We decided to move forward and do hbot and watched as God paved the way for this to happen as well as everything just fell right into place.

Liam had his first two dives today and will continue on until March 16th where we'll then return home for a while. We'll come back a month or so later for another 2 weeks of hbot. He does have some tender ears today but drops and diving slow should prevent anything serious from happening.

*Rylie has better photos-I'll have to post those when I get back to the family.

Looking out over Haiti
Traveling buddies

The gorgeous view from our room.

Acrobatic turtles at hotel's fountain.


Vials of stem cells ready for infusion.

Infusion taking place.

The thin line is the cath and the even thinner line is the stem cells being released.

Dr. Anthony who organizes everything...amazing guy!

Huge bed for such a little guy down there.

Getting breakfast at the buffet the morning after...no issues from the infusion.

Last view of the country from our window. The soccer pitch had people playing nonstop 18hrs a day.
Heading home!
If you could, continued prayers for Liam would be greatly appreciated...for healing by the stem cells and hbot and for definite miraculous changes in Liam.

Love you all.

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