I am happy to report that Max continues to do well. He is constantly impressing not only his mommy and daddy, but his therapists as well. I am now beginning the challenge of socializing him appropriately, which I only hoped would be necessary. I am going to look into a story time at a local library and perhaps a music program for toddlers. Trying to find ways to socialize him that he can actively participate in is the difficult part. I hope these work out.
As for me I continue to use Max's Durable Medical Equipment (DME) company as my own personal therapy, if you can call screaming a valid form of therapy (at least it's covered by insurance). We rely on this company, Apria, oops, did I type that, for almost everything. They provide Max's bi-pap, feeding pump, all the necessary supplies for feeding, such as the "buttons" that go in Max's belly for his feeding tubes to attach too (picture of mini-button), feeding tubes, feeding bags, and food, to name a few. Unfortunately, relying on a company to provide for the day to day needs of your child is not ideal. Last week for instance, they sent us defective feed bags (which means they did not work in the feed pump) and did not send us a new g-tube for Max (see pic link above). Now why is this a problem you may wonder...Well, Max is on his feed pump for approximately 12 hours a day. Being on the feed pump for this length of time allows him to feed at a much slower rate, which is necessary for his digestion due to his acid reflux. When we are not able to use the pump we must give him hourly boluses (approximately 2 oz. of fluid) per hour...all night. Not really an ideal situation. On to problem 2...if you look at the picture of the g-tube you will see what looks like a balloon. That piece is actually inside Max's stomach and is filled with water to keep the g-tube from coming out. However, do to the acid in Max's stomach the balloon does not last (it literally gets eaten away by stomach acid). When the balloon gets a hole then the tube could come out of his belly anytime (there is nothing holding it in). We have been needing to change his tube out about monthly. Yes, Aaron and I actually change it out ourselves. A little frightening at first, but Max's nurse Fran did it for us a couple of times and we did it for the first time ourselves on Christmas Eve. Far more scary for the grandmas then for us. If we don't have an extra tube on hand it would mean a trip to the emergency room every time and the hole closes up really fast (2 hours). Needless to say I will take yelling at an Apria person any day over a ride to the hospital with my pinky in the hole in Max's belly. Now all this being said, the manager at Apria was able to get us a replacement button Friday afternoon, however, we are still working on the bag debocle. I think often of how nice it must be to take care and provide for your own child. I am not a fan of relying on a third party to provide Max's basic necessities. Just call me a control freak.
In other news, Aaron will be leaving next week for a 2 month deployment overseas. I am lucky enough to have a great support system consisting of family and friends and also the invaluable assistance of Max's nurses. Max and I are going to miss Aaron immensely, but we were very blessed last fall that he was allowed to stay behind when we were not as well equipped. Given that Max is doing so well and we have a successful schedule in place Aaron can leave feeling much more comfortable that all is well on the home front. Please keep Aaron's travels in your prayers.
