The phrase once you have children its not about you anymore has taken on a very different meaning in this household. For the last week and a half Sam has not been himself at all. He has been crying non stop and has refused to do any kind of interactive or therapeutic activity. To say the least it has been really tough emotionally and physically for the both of us. Sam needs a lot more stimulation and motivation then most other children for everyday activities. Life is just too difficult for him. It would be much easier for Sam if I allowed him to just lay around and do nothing. I try very hard not to do that, but sometimes if he is really out of sorts you kind of just have to let him be. Kids can get burnt out just like adults. It is scary though to see your baby regressing a little.
Today he did much better thank god. He was much more interactive. He sat up without support for the first time in the last week. It is so frustrating when you work so hard everyday with your baby and then you see regression. Its like finding out there is something wrong with him for the first time all over again. OK so its obvious that Scott and I do a lot with Sam. A lot of credit has to go to his therapists, nurses and grandparents too. There are a ton of demands placed on Sam and in turn there are a TON of demands placed on me as well.
In previous postings I wrote about Sam's intensive therapy plan, but what I didn't write about was the management plan that I am expected to carry over every single day. It is ridiculous. So in between dealing with nursing, insurance, ordering medical supplies, managing his appointments, running to the hospital for emergencies (we were just there again yesterday), taking Sam to weekly doctor appointments all over the tri state area, washing him, changing him, taking care of his feedings, venting his stomach tube, suctioning his mouth so he can breath, giving medications, and doing breathing treatments, his therapists would also like me to do the following: for swallowing I have to stimulate a swallow with a cold spoon 20 trails 3 times a day, do oral motor exercises and encourage Sam to put oral friendly objects into his mouth, for special instruction I have to make Sam an experience book using pictures of all the people in his life, have him interact and experience going through kitchen cabinets and drawers, work on simple concepts like waving hi and bye, open and close, and up and down, read stories, etc... for occupational therapy and physical therapy I have to put Sam in his stander 3 times a day for 30 minute intervals, have him reach while supporting him in a quadruped position, do sit ups, pull objects in and out of containers, do exercises on his therapy ball, and have him experience sitting unsupported as much as possible.
Yeah OK I'm getting right on it. I'm sorry would you like fries with that too? And then some of the people that come into my home say, "Wow, you look really tired" or "You look way too skinny." Well no fooling Freddy would you be able to eat and rest if you had to do this much in a day. The one thing to remember is that its not about me, its all about Sam. As long as he is able to tolerate everything that he has to do in a day then it gets done. God bless all of Sam's therapists, nurses, doctors, friends and family. Sam is benefiting so much from all of this. I however look and feel like I aged 20 years, but who cares. Giving Sam the best chance he has in life is worth anything and everything.