Tuesday, August 25, 2009

What next?

The kineret arrived and is safely stored in the refrigerator. It turns out Robby needed to have a chest x-ray and TB test before he can start the kineret. I took him in for those this morning. The TB test needs 48 hours to develop, so we will have our injection training on Thursday morning and he will receive his first dose then. I hope with all my heart that it works well and quickly. I know it can take a month, or maybe longer, but I pray we'll see good results as quickly as possible.

"I can't walk. I can't walk." was the phrase that just about ripped my heart out this evening. Robby spent the day refusing to take more than two or three steps, if any. He would just give up and try to sit down on the floor. The pain has to be pretty great because he would start to cry and try to grab onto something as soon as I would stand him up. Also, he wouldn't even walk or stand to play with the other kids at the baby sitter's house today which definitely means he was feeling really bad. Usually he can get distracted enough with play to get around at least a little bit. My emotions are all over the place. I feel so sorry for him and upset that he has to feel like this. It is also very frustrating and draining taking care of him when he can't stand or walk. He is 34 pounds now so carrying him is no small task. It also makes all the little things like changing clothes or getting in the car complicated. I alternate between hope that the kineret will work quickly and fear that he'll be like this long term. How will I take care of him if he can't walk? I know people do it all the time, but I wasn't mentally prepared for him to be disabled to the point of impaired mobility.

It seems I keep reaching the point where I feel I can't take anymore. Then I take a deep breath, square my shoulders, and realize I have an important job to do. I soldier through with plenty of prayer and help from my husband and other family and friends to encourage me. Then something else happens and I find myself all crumpled up and back at square one again. I keep wondering what else can happen and I dread ever knowing the answer.

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