Doing Better…
December 10, 2008 | Updates
I’m doing better at posting - only a little over a week since the last post. Honestly, I have so much to do I can’t think straight (not that I can normally think straight), but you get the idea. Christmas always comes so fast each year and I’m never prepared for it. Luckily this year, there will be a little less shopping. We told the kids even Santa’s feeling the crunch, so there will be less presents this year. Actually, I’m looking forward to it. It’ll feel more like Christmas should - more time together and less commercialism.
Samuel is doing a little better. He has been to school most everyday since my last post. He didn’t go today because when I picked him up to take him to the car he made the saddest little face and the tears started streaming. When I asked him if he wanted to go to school, I got the sad face again and more tears and being the hard nosed mom I am, I told him he could stay home. I just can’t fight those tears. I just can’t. I don’t think it had anything to do with school though. I think he likes it there. I just think he wasn’t feeling quite right today. Maybe tomorrow…
We’ve seen a few smiles, though, and that’s been nice. And he’s been more calm some days. We did take a trip to Salt Lake today to see the Follow-Up Nutrition Clinic. They confirmed that he is way too skinny. I explained to them that he lost all the weight while he was sick and has gained back about 3 pounds in the last few weeks. They gave me a few ideas to get more calories into him and we’ll be watching him closely for the next little while. They also did a bunch of blood draws just to make sure nothing strange is going on. But basically, he should weigh between 36 and 40 lbs and he only weighs 32. We’ll get it back up there, though.
My favorite part of the day was this short conversation with the nutritionist:
Nutritionist: “If he drops below 80% of what he should weigh, then we’ll have to take more drastic measures - like tube feedings.”
Me: Dead silence and a blank stare as my mind tries to figure out what the crap she just said. Tube feedings…tube feedings? Isn’t that what we already do with him? Is there some other procedure that is called the same thing? Doesn’t she know he has a tube? Maybe she means IV nutrition?
Awkward silence as my brain is too slow to figure out what to even say in response…
Nutritionist: Realization hits her…”Um, I mean more tube feedings than he’s already getting.”
Me: “Uh, ok.” As I try to figure out exactly how that is a more drastic measure…but, whatever.
So, that’s it for now. I’ll leave you with a cute picture of Samuel. He had a blow out diaper last night. Well, I guess it really wasn’t a blow out. It was more of a “the diaper came off before he went and no one noticed until he’d been wiggling around in it for 15 minutes” diaper. The only way I can describe the mess is it was something NO ONE and I mean NO ONE should EVER and I mean EVER have to see, smell or clean up. It was WRONG. Really. It was. But after hauling Samuel to the tub, spraying him down and then filling the tub with bubbles and water to make sure every inch of him was sanitized, I got this cute picture. And it reminded me of a little angel…
Hope your holidays are shaping up to be great!
Love,
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December 11th, 2008 at 12:39 am, Suzi Searles Says:
It’s so good to hear that Samuel is doing better. I know how hard it is to get weight onto these boys we have. I know that you make his food, if you would like any suggestions of foods that I have found that are adding pounds to Luke, please feel free to ask.
Suzi
December 11th, 2008 at 8:16 am, Sharon Jewkes Says:
What an angel is right! Thank you for the posts. I sometimes wonder why they put food color and so much unnecessary stuff in medicine. It is not good for any of us. So happy that Samuel is have some improvement. Think of you all the time. You still amaze me with all you do. We wish you all a wonderful Christmas and a much better New Year with lots of improvements for Samuel. Love, Sharon
December 11th, 2008 at 12:10 pm, Darlene Says:
Hi Jewkes,
Hope all is well at your house? I am sure Teresa that you will get Samuel’s weight up to par in no time. He is so precious that I can see why its so easy to have a soft melting heart when it comes to Samuel. I would like to wish your family a happy holiday season filled with much health and happiness.
Much love,Darlene
December 11th, 2008 at 3:02 pm, Natalie Says:
I’m glad to hear he’s doing better. I love that picture! He is so cute. And his g-tube site looks great! Hope you have a Merry Christmas.
December 13th, 2008 at 8:23 pm, Heather Says:
Speaking from the point of view of a nurse… who has worked as a respite worker with kids with medical needs… I think I know exactly the kind of mess you’re talking about, and you have my sympathy! He does look really sweet in that tub picture though.
Good luck on gaining back those calories. Any chance you can sneak christmas baking into your regular concoction of tube feeds in the blender? I mean, it seems to work for the rest of us to gain a few pounds this time of year.
December 22nd, 2008 at 2:43 pm, Mozi Esme's Mommy Says:
Fluffy cloud stuff in that photo for sure! I’m glad you’re seeing some smiles. And hope you get the weight thing figured out soon…