This Sucks March 5, 2009
I am having a really hard time here. I’m exhausted and frustrated. And to be honest, somewhat disappointed.
Adam’s still a big ball of reaction. He’s not tolerating the Neocate Jr. either. They changed the concentration that we’re making it at today, but I don’t think that’s going to help. He’s just a mess.
Adam has his endoscopy and colonoscopy tomorrow. I’m afraid that they won’t find anything and then we’ll be on our own yet again.
I guess I shouldn’t have gotten my hopes up that we would find THE answer here. Maybe things will turn around, but right now I’m seriously discouraged.
I hate seeing him like this. This can’t be what’s in store for him. This can’t be his life. We have to do better. We have to find something he tolerates better. I need my happy boy back.
- Posted in : our main man
- Author : amanda
Comments»
Amanda, hold on sweetie Things are terrible now but they will get better. You are an amazing Mom and have given Adam an amazing base. All of you will get through this eventually. Do what you need to do to get through today and then give yourself a pass for all of the extras you wished you could have done. Is Adam dressed and mobile? Amazing job. Have you managed to get yourself in some clothes too and somehow pulled a brush through your hair? Absolutely great. Did you manage to smile at even one person today at the hospital? Just remarkable. You are pulling yourself, inch by inch, towards a resolution. Keep yourself in the moment as much as possible. We are all rooting for you.
Amanda, try to hold on hun. I know it has got to be oh so hard to see your sweet baby hurting but the have got to go through the start, and the middle to get to the end. Unfortunately they will have to run a whole battery of tests on that sweet baby before they will have some answers or recommendations for you…they won’t give you any real answers until the end …yes it is awful for you and him and i think you feel worse because you can’t nurse him right now. You have done such a good job for so long. Like Gale said get up each day, get dressed, get Adam dressed, put one foot in front of the other and God and the Net will there WILL be and answer for you at the end of all of this.
amanda, this is really really hard. and you are doing amazingly - you’ve been coping with this for 2 years now, it’s a long long time. You’re at least 10 pounds lighter than you should be, which means you have fewer reserves, less resilience and I’m sure you’re exhausted. Not to mention that you’ve just been really ill. Hang in there. Something will work. Unfortunately it may take longer to find it.
Amanda, hang in there. Even if they don’t find THE answer, there is hope out there. I agree with thalia, you have been running on reserves for a long time, it’s only normal that you would feel this way. Something will happen to turn this all around. And you’ve got us to lean on. Hugs coming to you and your family.
Thinking of you all.
I hate that you’re not getting answers, and that Adam is feeling so miserable the whole time. It’s so hard to watch your child when they’re not feeling well.
First off {{{{Hugs}}}} to all of you. I can only imagine how hard it is for you especially seeing Adam having to go through all that. Try to hang in there. Unfortunately, there will have to be to be more tests to see what is going on with Adam and as you said this is not can be in store for him. I pray that you will have options - if not the direct answer. As everyone said, this has been incredibly draining for all of you and it is hard not to have such high expectations, but you guys aren’t at the end yet. I continue to think of all of you and hope that things turn around soon! We are all here for you.
*hugs* You’re seriously my hero.
Oh, Amanda. This really sucks. I’m keeping everything crossed and thoughts positive that you’ll get some useful answers out of this experience.
oh chickling i wish i had some words, any words, to make this easier for you and Adam. What you are doing and what you have done for the last 2 years is incredible. I know you want your happy boy back and you’ll get him just hang in there for today and see what tomorrow brings. huge hugs my friend.
Amanda, so sorry that this is all so difficult. Continued hope that they can get to the bottom of what’s causing all of this…