G is sick....

102 degree temp last night. She got up this morning, but crawled right back into bed. Wood was just trying to convince me yesterday that she really IS better than she used to be. No kid should be sick this much. I pray we are not headed for another pneumonia.

No job news today...

For I am mindful of the plans I have for you, says the Lord, plans for your good and not for evil, to give you a future and a hope. Jeremiah 29:11

Pray for good news on the job front...

They were supposed to decide by the end of this week about the job that Wood is going after. Our family really needs this. Please pray that we he hear positive news. We didn't expect to be without a job this long. It's been a LONG 5 months, and his unemployment ends in a few weeks, unless the unemployment extension that congress is debating about goes through. Michigan has the highest unemployment in the nation, and in the area where we live, it's 9.8%.

Oldest daughter M, age 21, is talking about taking a semester off in the fall to take a "break", but I believe she's just responding to our situation. I don't know how we're going to help out son B, age 19, as he also has room and board costs at his school. We only help with their costs, but they can't do it without us pitching in. Financial aid calculations don't give an accurate picture of our family's circumstances - they use last year's tax numbers, and Wood was employed until December. So it will be another year before they qualify for any meaningful aid.

Add all that to the fact that I now feel we should have publically and loudly challenged the racial discrimination that caused this situation. There was so much on our plates at the time, especially with my diagnosis, it clouded my judgement.

Pool pics

More pics from our Milwaukee trip. I wish I had some pics when we went to the Betty Brin Kids Museum with Sarah and her wonderful family - husband Jeff and kids Seth, Thad and beautiful baby Hannah. But I left my camera back at the hotel room!

In Milwaukee, I saw little girls with such beautifully done hair - my efforts with A's hair simply pale in comparison. Moms ask all the time on the hair board about swimming with kinky curly hair. They express that they don't want their children to be the only ones who have to wear a swim cap. They don't want them to stand out or feel "different". I used to make both the girls wear a swim cap, but now only A does. G doesn't really need to, and it didn't seem right to make her wear one too. A wears hers without complaint - it's just part of taking care of her hair, like a sleep cap. But it was very affirming to her to see all the rest of the AA little girls in the pool all wearing their swim caps too.

It was wonderful to be in a slightly warmer climate - yes, Milwaukee is "down south" for us. It is still quite cold here - no leaves on the trees yet, no need to cut the lawn yet and it has still been in the 40's. It snowed here on Sunday. Just flurries, but still. At work, we are already clearancing out the summer clothing, to make room for the fall stuff. Hey, we haven't even had SPRING here, people!

I worry about G endlessly. I had a very anxiety ridden pregnancy with her, and that anxiety extended to her infancy. I have always had the sense that she was meant to be mine for a short time only. She's the only one of my kids whom I've felt like this. Her mind is absolutely incredible - her intellect is astounding. But physically she seems so fragile at times. Swimming is good for her. Her doctor in Milwaukee told us it would be great if she could swim 10 days a week. She's still trying to figure out how you can swim 10 days a week if a week is only 7 days!!!

Babies....

A has always been quite reserved around babies. She is loving and kind to other children, animals, and her stuffed animals. But babies are another story. She usually is quite unhappy around them. She seems, in part, jealous and longing of the nuturing that she sees them getting. She lost that at a time in her life when she desperately needed that intimate nurturing, but wasn't able to receive it. But she also seems to be unhappy that part of her wants and needs what the babies are receiving. She doesn't like feeling small, needy and vulnerable - she seems to view it as a defect in herself.

When we were in Milwaukee, she watched a mother and small infant in the pool for a long time. When they left the pool, she turned to me. "mommy, when I'm big, will you still love me?"

Yes, baby girl, as long as I have breath in my body. Oh how I wish I could make you believe it, deep down in your soul.

Madison zoo

We visit zoos everywhere we go. Wood's brother, sister-in-law and the girl's cousin Claire took us to the zoo in Madison, Wisconsin. A great time was had by all!

Cute as a button polar bear cub, don't you think??


Another adorable cub.....


Sitting on a giant tortoise - G doesn't look so sure about this one!


Too cool for words...


With our cousin Claire.


The dynamic duo as dinosaurs!


With Daddy!


Don't we just shout "Tourists!!" in this one?

Children's hospital of Milwaukee

Waiting....

More waiting.....

Still more waiting.....

G's appt was yesterday. It was exhausting. We ended up spending most of the day there. We arrived an hour early for our 10:50 am appt, and when they took us immediately, we were so pleased that we would get an early start on our trip home.

The doctor was not pleased with how G has been doing. He said it was "totally unacceptable". He started her on a treatment for acid reflux. G was treated as an infant for reflux, and she has started describing symptoms to us that are consistant with a recurrance of this issue. He also changed her from her nebulized form of Pulmicort to the inhaled version - on a VERY high dose - an adult dose. This scares me to have her on so much steriods. Also, we just had her previous form of Pulmicort refilled for a 3 month supply, which costs us over $200. Now he doesn't want us to use it at all. That hurts. G's medications cost us hundreds of dollars a month and to have over $200 of brand new medication sit unused.....

He ordered many tests while we were there, and we spent the ENTIRE day getting everything done.....labs, radiology, respiratory testing, etc. I of course, looked all the tests up on the internet last night, and some of the things that they identify are scary - cancer, immune system problems...did I mention cancer?

He told us that there is a growing group of children who test high on tests for CF, who don't seem to have full blown CF, but have many similar problems and do rather poorly overall. He told us that the long term prognosis for these kids is not clear.

We should have all her test results back in about 10 really, really long days.