Elias & Playtime Learning Fun

Elias is doing well. He got his four month vaccines night before last so he was a little cranky. We had a wonderful time last night playing and laughing and learning. We have started introducing the sense of touch now that Elias is on rare occasion beginning to reach out for things. He is enjoying this new sensation. We let him touch things with his hands and feet and face. The funniest was actually not even an exercise in touching. Elias is learning "kisses" well, sort of. Mommy has been able to give him big kisses on his cheek and then holds him up to her cheek. Elias opens his couth as wide as he can and plops his head forward touching her cheek, thus giving a kiss. Well mommy held him up to daddy's cheek and he did it and his eyes lit up when he felt daddy's five o'clock shadow. He didn't dislike it, but recognized that it was different and did it again! We also brought in a wood frog that has a dowel like wooden rod, one end thicker than the other, and when you run the rod over the frogs back it sounds like a frog. He was slightly interested in the sound, but more amazed by the way it felt. He let him touch the rod since it was small enough on the one end for him to get his hand around....he actually held it!! He had a grip on it clutching it. We have not been able to repeat this process, but it was exciting non the less. He is really enjoying touching Donald Duck too. He accidentally knock it on the floor so we took it home to wash it. When we brought it back he was so happy to see it. That cemented the thoughts on how attached he is to "his Donald." It made such an impression we went out the next day and bought two more "backups" for when something inevitably happens. As for the G-tube still no more leakage. It is so random, but remember tomorrow is Friday and we figure about 3:30p-4:00p it will do something again, as it has the last several weeks. The thought was brought up yesterday about it sitting so close to the pylorus wall was sometimes positioning it self and pushing it out, this would explain why it doesn't do it all the time and with no rhyme or reason. I think it makes sense, think about it like this. If you stand 1 foot from a brick wall with a garden hose and spray it, guess what you are going to get wet. It is going to bounce off the wall and back at you. After getting wet a few times, now you step back a few more feet and repeat the process because logic and experience tell you that you'll be out of harms way and keep dry. With the G-tube think in terms of inches instead of feet, but the point and result would be the same....right? Tell me again why you have to go to school so long to be a doctor....just kidding!! The overall point here is that we have taken that baby step towards a possible acceptance of a problem, but haven't quite made it to...this is what we are going to do. They want to stand 1 foot from the wall and keep getting splashed, and that's fine they just need to aim lower so it looks like they peed their pants, then maybe they might decide to move. :D

Today I got a phone call from the director of the coordinating center for the model waiver program. Our case manager at the hospital had also been looking into a few other programs for us that might be quicker or at least more defined in terms of a timeline. There is a Rare and Expensive Case Management program (REM) that the state has through its children's healthcare program (MCHP). Elias would qualify for the REM if we can qualify for the MCHP. Their are income guidelines which in our present situation with Michael on extended family leave could push us into being able to receive this benefit. There is no difference in the REM and MWP in terms of coverage. When we would no longer qualify for REM we would simply slide into the MWP. The MWP director says she thinks this is the road we should take, for two main reasons. First, the MWP is designed to be a last resort means of providing when all other avenues have failed. If we could qualify for REM it would open the space for another family to get on the MWP. Secondly, with the REM there is not a fixed number of participants like there is for the MWP. As soon as you are approved, your benefits are in effect. So this scenario may prove to be beneficial to us and we would be helping another family out there. When we inquired about the potential for a spot not being available on the MWP once we were off the REM, she simply said that we would appeal the evaluation and a hearing date would be set. Usually, by the time of the appeal hearing a spot will be open on the MWP. So there would be no coverage lapse.

Today I have been on the phone trying to find out some answers to questions that will determine if we even qualify, but as usual you either do not get to speak to a human or if you magically weave your way through the secret maze to a live person, they can not assist you directly. Instead they give you another phone number, forcing you to begin the quest all over again. I tell you all this as if I or anyone reading is shocked by this fact. We are still moving forward with the Model Waiver just in case we do not qualify, but it would certainly mean the potential for a much faster transition home and that is the prize!!