Jaime and I spent nearly an hour and a half with the nutritionist today. Jaime is still hovering around 3% for weight and 5-7% for height...for his adjusted age! He is not on the charts at all for his "real" age. ARGH! I swear, I've been keeping a food diary for over a week now, the boy eats...well, not "eats" so much as drinks. The "new" plan is to have Jaime drink at least 30 ounces a day (he's averaging that now), but add 5 scoops of Duocal (high calorie powder) to his already high calorie formula, in addition to the Beneprotein. Yes, that's right, 1 bottle will contain 3 different types of powders to make this boy grow! It's kind of like Jaime's personalized fertilizer! HA! I sure hope it works! Nicole (the nutritionist) said that Jaime's looks are deceiving, meaning that he looks much bigger than he really is when he's dressed. Once undressed, he's a bean. Let's put it this way, Jaime's wearing a 6 month sleeper to bed right now, he's 10 1/2 months old! :( Although, if he's not going to walk for a while, I'm kind of glad he's a bean...he's much easier to carry! :)
Having said all of that about the formula mix up, our goal next month will be to trial Jaime on Pediasure. Apparently it's a 30 calorie, already made up drink and if Jaime tolerates that, then we can stop his vitamins and the formula science project. That would be great for so many different reasons. (The vitamins have a habit of aggravating reflux.) So, the plan is to get Jaime through this next month, watch his growth, follow up with GI and contact Nicole via email! She's saving us trips back and forth to her, for that I am grateful! (Of course if we change hospital systems, we may be starting all over with this.) The bottom line, is that we are going to do anything in our power to avoid another g-tube conversation! :)
In other medical news...Mr. Jaime, my dear little hemophiliac, bit his tongue for the very first time at dinner tonight. The boy only has 2 front bottom teeth. Here's the problem, Jaime's been discovering his tongue and we've (OT/SP/myself) been working with him to lick his lips. Guess his tongue got in the way tonight! ;) He's fine, his tongue bled for about 2 hours and I have no doubt it will probably bleed again on and off tomorrow, that's just how this works. Such is life in "hemo" world! It's kind of funny, with all that's "wrong" with Jaime, I sometimes forget that he's a hemophiliac, too! Yet with Jared it's a daily thing. He skins his knee at school, he goes ice skating...he needs IV Factor. And, if I do say so myself, I'm GREAT at inserting IV's...you know, just in case anyone is ever in need! ;)
Just a final note about CDH Awareness Day...Breath of Hope is one of many CDH organizations who sponsors this event! This organization gave us much hope last year and continue to support our family. I've met some wonderful people through this group! I am accepting donations of quilts or small silky blankets for Cincy's RCNIC, but if you'd rather, you may feel free to make donations in Jaime's honor to either
Cincinnati Children's Hospital Attention: RCNIC at http://www.cincinnatichildrens.org/give/default.htm
or
Breath of Hope, Inc. at the following site: http://www.breathofhopeinc.com/. Also, if you're interested in purchasing any CDH Awareness clothing or accessories, you can do so at: http://www.cafepress.com/breathofhope.
Thank you so much for all of the love and support that you have given and continue to give for our family! We will be forever grateful to each and everyone of you.
Jaime's eyelashes are just too much! Boys always get the longest eyelashes - guess that is why Mabaline is in business!
ReplyDeleteThese formulas for these kiddos - perhaps a CDH Mom will start one of their own that has 40 calories per ounce ;-). Not a huge market but one never knows.
Glad things are falling into place for Jaime's care - and stop biting your tongue little man! It hurts!
Carter's on Pediasure now. We alternate it with whole milk mixed with Carnation Instant Breakfast, which is also full of vitamins. It works MUCH better than formula for him (as far as reflux).
ReplyDeleteOne thing to watch for as you increase the density of calories in Jaime's foods is an increase in vomiting. It took us a LONG time to figure out that Carter's GI system just can't tolerate very high concentrations of calories and he still vomits if we put too much Duocal in his food (i.e., 2 scoops to one container of yogurt vs. 1 scoop). If Jaime has "unexplainable" vomiting as you increase calories, that may be the culprit.
I'm glad you are getting some nutrition help. It's difficult to do this alone.
You are doing a GREAT job and he'll catch up. Carter's a bean pole under his his clothing, too :)