Friday, March 30, 2012

House of cards

Life with Audrey continues to be a struggle. In the six weeks since we have returned from her surgery she has only been able to go to daycare four days in a row twice. After each of those weeks she ended up missing the next week due to sickness. In fact Audrey has been sick every week since the week of Valentines. What are we going to do?? For the past month we have been working with her pediatrician to brainstorm different ideas to provide care for her. Since I am the major income earner and I carry the benefits, not working is not an option for me. We seem to fall in this middle America gap where we make too much income to qualify for any assistance but we are unable to afford it ourselves. I can only imagine how many other families find themselves in this same predicament. There are so many programs for low income families it is very discouraging that we can't qualify for anything! Don't get me wrong, those families absolutely need the help but so do we! Audrey also falls into this gap with her disability. She is mildly delayed and has some medical needs. She is 2.5 so we are in transition to the school district. They are afraid she may not be delayed enough to get accepted but are concerned with all her medical issues, without any therapies she will quickly fall behind. Regional Center is in the same boat. She does not have epilepsy or MR so while we are going through their evaluations, we don't think she will qualify for that either. It certainly does not look promising.

So now I'm evaluating my job. Though I have to keep working, and I'm terrified of switching employers and risking a change in insurance, she cannot continue to go to daycare. This week she came down with hand-foot-mouth disease. It's such a common daycare illness, that really every child has at sometime or another. With Audrey though she had fevers over 103, required 1L of oxygen continuously and 6 days later is still not better. She's losing weight and is weak and wobbly. When her body is taxed her speech and thought processes really suffer which leads to frustration on all of our parts as we don't understand what she's telling us. The last illness was just a simple URI with the same dramatic response. We have to find a solution that will work for the whole family and be able to keep her healthier. For the time being my husband and I are switching off days staying home with her. He doesn't have sick time at work so everyday off for him is without pay. He is also less comfortable with the medical aspect of her care, though he is becoming more proficient each day. While I have plenty of sick time and am able to do her medical care, I have a job where I have patients with appointments to see me. If I don't go to work, my work continues on and I have to catch up. If I am not there to see my patients I have to get someone else to see them so it's not an easy thing to just call out sick. Add into this whole mix the emotional strain of watching your toddler go through all of this and it's no wonder we are all walking on eggshells waiting for the shoe to drop. I know sometime soon something has got to give as this situation we are in right now will not last long.

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