Friday, June 25, 2010

Wish I could diet like Garrett!

So Garrett has just finished Week 1 of the easing him onto a mitochondrial cocktail. This week he took CoQ10 daily at 8, 12 and 4 . He seemed to tolerate it well. He had a day of very dirty diapers after he started it, but he was due for one of those days. He did have two more pretty "moving" days after that, but hard to know if it was the CoQ10 or just the way his body was functioning. He seems to have more goofy energy this week. He has more loud outbursts at no promting, and I have more trouble with him kicking and acting out while I am changing his diapers and getting him to follow directions when I ask him to go somewhere in the house. Maybe that's all great stuff because it shows an increase in energy due to the CoQ10. But I have to admit that if this is how he is with additional energy......okay, I won't say it because I know that my baby having extra energy is a wonderful thing, especially on a cellular, survival level. Now we add Carnitor (L-Carnitine) next. Hope I spelled all that right. He will take it at 8, 12 and 4 also, so at least I already have the times together. I was very worried I would not be able to keep up with the dosing times, but I set three alarms on my phone, and that has worked great so far. Then there's the issue of keeping the supplements along with us when we are not there's a logistical nightmare because we have NO schedule right now, so since we have been home all week, it hasn't been an issue yet. I found a neat cooler that is small. It has built-in gel packs sewn into two sides, and it is just large enough to hold two baby bottles. It is black, has a shoulder strap and a velcro stroller strap, and I found it at KMart, but I see online that WalMart and Target carry it. It is called the Playtex Fridge-To-Go Bottle Holder-Double. For some reason I can't attach the will not let me see the paste option!! Oh well. It's just large enough to hold 3-4 bottles of meds without being huge. It easily fits into another backpack or bag. The pharmacist told me that when we are away from home, if we keep them cooled, they will likely stay effective in the bottles for longer. This is important since some of the supplements come in large quantities, so they need to stay full strength for over a month once opened. Oh, and it is at least 93 degrees here every day, so if we go anywhere, there's a good chance they will be in the car in about 115 degrees if I can't take them in everywhere we go. For now the little cooler is great. Pop it in the freezer or fridge and use until needed....perfect!!! Now for me to remember to bring it with me when I go or send it with another person if they have him and then remember to get it back......more alarms might be piling up on my phone for that, too!! Uh-oh, what if I lose my phone? What if oil keeps spewing into the Gulf? What if each of my thousand bags flying to Montana with us weighs over 50 pounds? What if the grocery store stops carrying Laughing Cow Cheese original flavor? I digress.

So Garrett has not gained any weight in over a year and a half. He weighs 34.5 pounds.....had gotten up to 36, but is back down from that about 6 months ago. His eating habits are less than normal, to say the least. And for quite a while he was an eating champ. Now his favorites are macaroni mixed with corn, McDonalds chicken nuggets, Raisin Bran. Breakfast is almost nothing but soy milk. He will occasionally nibble on a waffle or his new true love RAISIN BRAN!!!! Oh, and he protests if there isn't a raisin in EVERY BITE. Did I mention sensory things are the riasin in each bite, more noise sensitivity and frustration..... But he is even slacking on the raisin bran lately. Then lunch he usually will not sit still to eat, and dinner.....uuuggh. He is drinking soy milk....a good bit, but looking pretty darn thin. Dr. K's nurse assures me this is normal for kids with MITO, but I just don't know how he can possibly keep going this this, or thinner. Of course I do not want to see him ever go through any more procedures, but right now I sometimes wish his feeding tube as back in his belly so I KNEW he was getting what he needed. He is being a real champ about taking his supplement, thus far, by mouth, so that's wonderful.

Today is GET READY day. Or I guess if you take the process to move this crew to Montana for a month as READY, SET, GO!, then today is SET....... I think. I guess it could be READY, but we are WAAAAAAAAAAY past READY to go up there. Now it's SET!!! Then it's GO on a 6 a.m. flight........I am certainly NEVER going to be READY for that!!

Here's a teaser for the next blog........"Hey, Miss Clara-Leigh, _________ just peed outside by the pool right where we have to walk!!!" Let your mind wander and see if you can determine who that might be!!! Hint: It WASN"T Garrett...........


1 comment:

  1. You are too much! Hey on the raisin brand. I discovered from my thrifty mother that Great Value Extra Raisins is way good. I actually prefer it to the "name" brands. I will be thinking of you while traveling...and praying all goes smoothly...enough.