The warning we were continually fronting was about the ionization. Ionizers produce a level of ozone gas while they produce beneficial effects. It is the ions and the ozone that help to purify the air. Well, apparently some believe this particular type of ozone gas is harmful. I could go around and around with this argument all night; but, the bottom line is the box does have warnings against using the ionization for those suffering from any breathing related difficulty....... DING DING DING!
While we had pretty much decided we weren’t willing to take the risk of the ionization, we had already scheduled a meeting with a local company about home filtration..... anything better than what we have now. There may be some great advantages to the ozone and ions, but it isn’t worth the chance to us. We were more interested in replacing the filters we have in the home now with HEPA quality filters. Come to find out, the filters that were provided for us by the home builders only filter 3-5% of the particles from the air...... Go Figure!! Actually, they are fiberglass filters, not “plastic” as advertised. Sold in California, they require a Surgeon’s General warning on them. Clearly, this wasn’t gonna cut it for Ian.
While unable to complete the whole laundry list the HVAC man provided, we did find one very useful place to start. We will be replacing our “hazardous” filters with ones that provide much higher filtration. We are still on the search for the best one for our needs. We are also impatiently awaiting the first frost when the ragweed can keel over and die.... sorry ragweed!
Ragweed aside, Ian’s doctors have decided to trade in the current formula for chicken, cranberry juice, veggies, and fruits. Thankfully, there is a formula that contains all of these. It is essentially a blenderized diet in a can. Now, this is in no way implying that using this formula is ‘like’ eating blenderized diet (BD), because it isn’t. I have many friends using a BD and it is a wonderful philosophy. As of right now, Ian needs a little more monitoring of his particular nutrients and quantities to be on a free BD. The next best thing is his new Nestle Compleat. This gives Ian the chance to continually eat real food that is supplemented with all the goodies he needs.
The previous trials were leading to lots of dead ends. When they backed down Ian’s corn starch, (which was being used to keep his blood sugar buffered and stable) he had trouble keeping his sugar up and had an increase in loose bowel movements because he was “dumping” again. Only trouble with that is, the corn starch was backed down because of GI intolerance to the higher levels he was previously on. It was very cyclical and was going nowhere. Whatever tweaking we tried, Ian wasn’t improving. Tom and I have been brainstorming for the last handful of months about the food he was eating. At first, it was doing wonderful things for him. As time went on, it seemed harder to keep his system happy. Everyone is praying that the new Compleat diet will help lift him in the areas he needs, and maintain the levels he needs.
We began the new diet yesterday. I must add that it is such a breeze to make. Even easier than lots of kids’ meals. Now, now, I know that sounds strange, but let me start with our previous adventure.
1) The older formula required us to mix 3 cans of formula, with 370 mLs or water, 13 mLs of canning liquid pectin, and 67 mLs of Microlipid Rx (fat in a bottle-gross!).
2) Then, each bottle (4) was given 120 mLs (one bottle for each meal). Ian’s overnight meal was in a large bottle.
3) During the day, each of the 120 mL bottles received 1.5 tsp of corn starch just before eating. This needed to be shaken vigorously in order to mix completely.
Everything needed to be mixed in a large pitcher before dividing it up into meals. With the new diet it is much simpler.
1) Mix 4 cans of Compleat with 40 mLs of water.
2) Divide into 4 bottles and 1 overnight meal.......... THE END!
Thankfully we have eliminated all the extra steps. Tom and I almost feel as though we are “neglecting” to do what is needed. It has been a routine for so long that it seems ‘lacking’ to not continue.
The first 48 hours of a new diet are the most indicative of what is coming down the pike. CHOP had us monitor Ian’s blood glucose very closely. We have readings for 30, 60, 90, and 120 minutes post meal, for all 4 meals during the day, and the overnight. That’s a lot of d-sticks (dextrose sticks) for glucose. Ian is such a strong and happy boy. He sits and puts his foot out the minute we come close with the monitor. Today he even came over, sat down, and started taking his sock off. If I ask him which foot, he picks one. If I ask him heel or toe, he points to one. I can’t decide if it makes me proud of him, or sad for him. I think it is a little of both. Children should never have to do that, and parents should never have to ask themselves those questions. Unfortunately, millions do everyday for one medical reason or another.
Ian’s blood sugars have been pretty darn good so far. We completed the 48 hours and will be submitting his report card soon. We had a few dips in the numbers, but Ian seemed to be strong and we hope the doctors at CHOP will feel good about keeping him on the new diet.
However, Ian’s retching has not ceased. I believe until we can get him to eat by mouth, and not artificially through a tube, the retching will continue. In the meantime, trying to minimize it with routines, recipes, drugs, and procedures will always be a work in progress.
Thank you again for all of the love and support. I am told that people all over the world are praying for Ian at home, in their own groups, and with friends. I’ve also been told that others are bringing his pictures to groups. Most of these people have never met in and only follow his life by word of mouth, BLOG, or family and friends....... even friends of friends. Some are bringing healing light and hope, while others offer hugs and kisses. Whomever, whatever, and wherever, we are grateful to all of you.
I like to watch Ian stack his toy cups. It seems like each time he builds, the bottom cup is never big enough to support the higher cups. As he builds, he often realizes his instability. He then promptly removes them until he has a place to put a larger, stronger cup. Finally, he has his tall pyramid of cups, strong and sound. I feel as though each time our stability falters, and the cups tumble, a larger, stronger cup slides in underneath of us to help bring us back up. The feeling is indescribable. Each time the cups falls, there is always another bigger, stronger cup not far away. Thank you all for being the bigger, stronger cups when we need them the most.
|Ian building with his cups on his first birthday|