Another Diagnosis

Maggs~

I'm so sorry that things are so overwelming for you right now. It's hard to know what to do in these situations and if what you're doing is right or wrong. I don't have experience with this, but just wanted to remind you to try to focus on the things that are going right for her rather than each diagnosis and the things that aren't. I'm sure it's easier said than done, but I have many times had to stop and remind myself to focus on the great things that my daughter has going for her rather than the things that aren't going so great. Best wishes to you!

Tracy

I am so sorry to hear that you are dealing with so much right now. It's so hard to think that you are always waiting for something else to happen, for the other shoe to drop. The only advice I have is to remember what a miracle she already is and focus on that.

I wish you the best of luck.

Katie

I am so sorry that you and your family is going through all of this. The only piece of advice that I can offer, which is much easier to say than to do admittedly, is to simply take it one day at a time. One diagnosis at a time. One test at a time. One result at a time. I know what helped me in the beginning of our journey was to keep a spiral notebook and to update it with each and every new finding/ diagnosis/ test/ etc. It helped me 'keep it all straight'. Best of luck and please do keep us posted, Maggs!

Love, Kelly

Maggs,

I am so sorry that you have one more illness to deal with. I agree we are always waiting for the other shoe to drop but somehow when it does, it is more devastating than we can imagine. I hope today is better than yesterday and tomorrow is better than today. Please keep us posted.

Ellen

Thanks moms. We went to the endocronologist and confirmed it is alopecia, it is moving pretty quickly, she could lose a lot of her hair. They told me to buy a lot of cute hats and prepare for the possibility that it all falls out, including her eyebrows and her gorgeous stunning eyelashes. Their is no way to know how much will fall out, if it will grow back, or the timing of anything. So, I'm switching gears to practical matters:

-Do you have any suggestions on talking to your child, to their peers, and to adults about their "differences?" For example, when it comes to her food allergies, I tell her that everybody's body needs different foods and for now that works really well to explain why Daddy can have pizza but she has something else for dinner. But what about physical differences?

-How do you keep from losing yourself entirely? For example, her many issues makes it really hard to travel and I'm not the stay at home type. I only left her once in 3 years for a family event in Jan 08 and she pulled out 1/2 her head of hair. Now I have a chance to go to a beach house for the weekend with my sister (who just got divorced and a mutual friend). I'm trying like hell to make it work out because I could use the break, but my absence could stress her out and she is already at risk for other autoimmune diseases (as per blood work) so is my weekend worth adding stress to her life. I quit my job when she came home from the NICU and try to do some consulting from home but basically she is my life and my job and I don't want to lose myself entirely but I also want to be responsible about the facts of our situation. What do you all think?

Maggs

Hi Maggs,

There are some storybooks about kids with differneces written by a pediatrician, I can look for the name. We found some about a boy with Asthma b/c my daughter takes nebulizer treatments at daycare every day and was fighting it. The nutritionist told us about one or two for food allergies, I think one was called, "why can't I eat that". I remember there was a swimmer in the Olympics (I think '96 but I could be off) Stacy something who had alopecia and never wore a wig etc. She might have a website now. That is all I have for now, except support. It sounds like you could really use a weekend away but I can't answer that for you.

Take care and we are here for you.
Ellen

Hi Maggs,

My daughter doesn't have the same issues as yours, but she has CP and is nearly 4 and does not walk yet. She has AFOs, a walker, crutches, and when she started school she had a speech delay/impediment. Her eyes were also crossed.
I was very worried about teasing...I wanted to find a way to help my daughter have a high self-esteem at a young age, but I didn't know how. Besides being encouraging, good parent, open and honest, etc.
I try not to tell my daughter that there is something "wrong" with her. I do tell her that she moves differently and with hard work she will get faster/stronger/more able to do "x". She responds well to that. We are also fortunate to have landed ourselves in a great pre-K program at public school--her teacher is fantastic. I was worried about the other kids, but ALL OF THEM (3-5) treat my daughter just like any other kid. I was amazed that actually happened, but it was true. These kids come from all sorts of different families, but the result was universal--her peers were great to her and their differences really didn't matter much. In my experience, most of the painful interactions actually come from ADULTS saying the wrong thing.

As for keeping yourself together...oh boy. When my daughter was 9 months old and the bad news kept pouring in, I told myself that I'd probably get bad news from every doctor visit for at least a year. I was right. Luckily for us, my husband and I fell apart at different times, so we could be a rock for each other. I also have mental health counseling at work--if you have access to that, TAKE IT.

My best to you and your family,
Amy
www.elenadoodle.blogspot.com