Satisfaction and being satisfied

L has a real hard time with being satisfied. He says he’s hungry, and it takes 5 minutes to figure out what he would like to eat, then you fix it, and then he doesn’t want it. This is the real frustrating part on our daily routines. You monitor his food, make suggestions of what he can have, he decides on something but then does not eat it. Then you have to make sure he does eat and drink, because when he stops doing those…well his ammonia will go up…however I must say the last three weeks have been almost unreal. We have been home without interruption. But I still don’t feel like that I can breathe any easier because it can turn any minute.

I recently had a conversation with his teacher and they are now in the process of trying to figure out what to do for next year. He is no where near ready to go to kindergarden, but he cannot be held back. No medication (as of yet) has worked to keep him focused for anything more than 5 minutes, though I do see some sloooooooooowwwwwww progress. The frustrating part is that he is not maturing, but he is functioning. His speech while not perfect, has improved tremendously. He still has a low-tone in his reflexes and more often than not requires MY undivided attention because no one else will do.
He very easily becomes obsessed with one thing and has difficulty accepting that it will not happen such as playing the video game, which wants to change from game to game. It’s like he wants to do everything so that he has not missed out on anything…because the reality is that one bad spill it could be over…

But that is why the transplant is in the process…Yesterday he had his MRI of the abdomen, another blood test and another visit with the doctor. L did really well accepting that we were not staying there for the night. He did ask if he was sick and if that is why we went to the hospital. So he does get some of it, and probably recognized that he wasn’t feeling ill. The transplant is scary and I am attempting to only keep the positive things in mind, but can’t help think about the what-ifs…and man I can’t tell you what it feels like to imagine not having your loved one around..and I hope that I will not have to face that before it is my time to leave this physical place we call earth.

I must say that all the hospitalizations and me missing time from work for 2 months has messed up our finances. We are struggling to catch up on the things that fell behind and the light at the end of the tunnel doesn’t seem to be getting any closer. For anyone reading and following this blog, I don’t want charity but I do encourage to purchase my artwork and jewelry instead. I don’t like asking for help, but perhaps I can promote my art work and create some additional funds to help us out. My family has been supergood in dealing with the bare minimums, but christmas is too close to not worry about not having anything for them…oh boy did I make any sense… Please if you are inclined to give…do it by purchasing one of my pieces at http://hippiescreations.etsy.com/ or visit my other website at http://www.hippiescreations.com for additional information.

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One thought on “Satisfaction and being satisfied

  1. My heart aches as I read through your blog. It just makes me so sad to read the struggle that L is going through and how there seems to be no rhyme or reason to his ups and downs. It is so difficult to see our children struggle, especially when we feel that there time is limited on this earth. Your dear little L is so precious and I hope you are able to take the time to cherish him and your whole family as much as you can. It is so difficult to try and keep a balance of the whole family when one child needs so much additional care. Our son also had a urea cycle disorder. He had LPI (Lysinuric Protein Intolerance) but he actually had very little struggles with his ammonia levels. It seemed to be the other things that took him down, not the LPI … although those other things would never have been there without the LPI so in the end it was the LPI.The biggest piece of advice I can offer is to cherish … cherish every moment you have, with all your children. Someday hopefully L will get through this and you can look back and wonder how you all survived it, but if his struggles are so great that you wonder if he will indeed reach that point then all I can say is cherish what you have. Take the extra time. Our lives are so busy we get so caught up in staying “alive” that we forget to take that time to sit back and enjoy life and our kids. I know this seems so difficult right now but the time you spend with your kids will never be something you will regret. Take as many picture and videos as you can … you can never take too many. I don’t know where you live but this site may offer you a wonderful gift that will be a blessing to you for years to come.www.littlestheroesproject.orgWe did not use this program but we did have professional pictures taken and we are always saying how thankful we are that we went that day.My heart goes out to you and L and your family. I pray that the transplant will indeed come before it is too late and it will be the answer to bring stability to L’s life. What a precious boy!

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