Saturday, August 14, 2010

What do you do when your kid can't eat all their food by mouth?

There are so many different options out there. Different formulas, pumps, schedules, and issues with the gut in a child with neurological issues.

I started with a feeding pump that had to be straight up and down in order to use because air would get into the tubing and the alarm went of constantly. I traveled around Arizona for a whole summer listening to that alarm, repriming the pump, and being super frustrated. It would not take thick fluid either as it did not have enough power to push the thickened formula through. I had heard that thicker helped with reflux but couldn't get it into Makenzie.

One of Makenzie's therapists suggested a different pump. What..... there was such a thing? I had no clue. I trusted that the hospital had ordered the best pump for Makenzie's needs. Come to find out there was better. After calling my HHC and finding out they did not carry that pump I started the quest to find a company that did. I finally found one that had the Zevex Enteralite Infinity pump. It is small, there is no need to hang the bag, and it pushes some super thick stuff through it!

This has become very important as I continue to modify Makenzie diet. Trying to get dense calories into Makenzie because of her volume issues results in a pretty thick end result. It is an end result that I am pretty proud of.

From the formula and vomiting, to the j tube, back to the g tube and trying to find something that Makenzie can eat and is good for her I can honestly say we are almost there! It is amazing how much of a difference having the right equipment makes! It is also amazing how having friends that have perfected the art of compacted diet and storage help make a seemingly daunting task a ton easier! There have been many days when I just wanted to give up! I am sure there will be many more similar days but I know this is better for Makenzie and I push on!

Makenzie is now on a 4 day rotating diet. Her formula is free of dairy and gluten among other ingredients that tend to disagree with Makenzie's stomach. Other then one night a month preparing and storing the food it only takes about 15 mins a day to make her formula. It is working and I am so excited.

I am still working on finding a multi vitamin that doesn't make Makenzie sick and until then she will still receive a bit of formula. THis will be replaced with a rotation of different types of non dairy milks when I find the perfect one.

Now if only I could afford to feed my whole family like that!

Changing the subject....

Makenzie did great in therapy yesterday! She crawled with help for a good distance. She moved her arms and legs all by herself moving forward to play with her brothers! She also looked great in tall kneel.

After lunch we headed to the store for school supplies, hair cuts, and to Whole Food's Paycheck before going to dinner at grandmas house!

Busy, Busy, Busy.

Today has started a bit slower but I have a ton to do this afternoon. I am ready for life to slow down. I keep thinking it will happen when the kids go back to school but I know it will not so I will keep running this race!

Believe... Pray Works


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