Saturday, May 31, 2008

A's questions about adoption

Tonight, she asked me "did you have 1 baby, and needed another? Then did you come to Ethiopia to get me?" I told her that I had THREE babies, G, M and B, but we were still missing one - and that was her. Wood was getting dinner ready in the kitchen, and she went up to him and said "daddy, were you missing someone before?". Fortunately, he had overheard some of our conversation and he answered "yes, we were missing you". She was just beaming after this.




G's test results

Her bloodwork seemed to show that her immune system is functioning. The test that they ran to detect antibodies to allergens was almost undetectable. That combined with her negative skin tests confirms what I've always felt - G doesn't seem to have any allergies.

Her chest xrays showed no current pneumonia or abnormalities, however, it is evident from the films that while she is getting in enough air, she is not able to expell it all. During her most severe attacks, this is exactly what she has told us - that she can't get air OUT, not in.

She should be starting the Pulmicort Turbohaler and the Prevacid shortly, as soon as they arrive from the mail order pharmacy that we have to use for maintenance drugs. After many, many phone calls, I have finally gotten them to agree to take the $200 worth of brand new, unopened Pulmicort respules back. Thank goodness, as her new meds are costing us about $170.

Her dr really wants to see her when she is ill again, so we'll probably have to pack and and go to Milwaukee again the next time she gets sick. He said that if we lived closer, he'd see her every few weeks, then monthly for a while. With gas prices at $4.29 up here, it's very costly to make trips that often. If she doesn't get sick in the next 3 months, then he'll see here then. That sounds too good to be true - three entire months illness free.......a momma can dream, can't she??

Thursday, May 29, 2008

Wood did not get the job....

He just found out today. There are absolutely no other prospects right now.

School meeting

Wood and I have a meeting with the principle of G's school today. We created somewhat of a controversy when we wrote a letter to the Superintendent of the Catholic School system in support of A's preschool being allowed to begin a Kindergarten program. G attends Kindergarten at a Catholic school with grades preK-8. A (and previously G) goes to a Christian, but not Catholic, preschool. However, the preschool uses a building that belongs to an area Catholic church, and bears the name of that church. Hence the somewhat tenuous tie into the Catholic school system. While the preschool is mostly independent, they do receive some financial support periodically from the Church associated with the building.

When the preschool began recruiting for the new Kindergarten program, the principal of the Catholic elementary school threw roadblocks in the way, and finally prevented them from proceeding by having the Superintendent refuse to let them go forward. Competition is a scary thing up here, apparently. We have few choices - public school, with 28 kindergarteners per classroom, or the Catholic school, which is HEAVILY academic for both preschool and Kindergarten.

A's school is fantastic. It is child centered, wonderful staff and they've been very willing to learn about adoption and transracial issues. A's teacher has a gift with celebrating the kid's differences in a natural, spontaneous way. We greatly desired to keep A here for Kindergarten. I fear the result of having A do tedious and repeated worksheets and other busywork that we've seen with G.

Did I also mention that during the recent Kindergaten Mother's day program, they read both a poem and a short story that emphasized that birth alone was the defining event that makes one a mother? Despite having 2 children that I know of in the class who were adopted and 1 child who is being raised by her grandmother.

The principal has not really listened to our concerns. When Wood attempted to explain, she responded with "well, A seems smart". Ok, when did you hear us say that A was not intelligent??? We are talking about a difference in philosophy and direction. She asked that we come in and talk with her today.

Should be interesting.

Wednesday, May 28, 2008

Hopefully test results today...

Today is probably the first day I could realistically expect test results back on G. I'll call Milwaukee and see if I can get them.

G is feeling pretty good- the Zithromax is working on her infection and we are weaning her off the prednisone. She eats well while she's on it, and has a ton of energy. I wish she could have that much energy normally. Little sister A has energy to spare.......

Nothing on the job front. Wood is pretty depressed about it. I wish they would just tell him what their decision is - this not knowing one way or another is frustrating.

The local economy is really tanking up here. We have unemployment of about 10%. Gas prices are $4.29 per gallon. Good thing I only drive about 2 miles to work each way. It's costing me $50 to fill up my old Subaru Forester. My sales at work have slowed to a trickle. This is going to be a tough year for everyone.

Monday, May 26, 2008

Loss

As I was snuggling with A today, she told me that sometimes she gets a dream where she is all alone and nobody is there with her. She says she feels cold, all alone, and her heart is broken into pieces.

It was so hard for me to sit with her in her pain, and not try to fix it. This child challenges me to stretch the limits of my knowledge about children, loss and grief. She forces me to exit my own comfort zone, in order to join with her on her path of grief and loss. Never mind that I had painstakingly thought through the "best" activities and approaches to help her navigate the raging waters. She is charting her own course, and my job is to love, support, and walk with her.

After two years, she is beginning to feel safe enough to forge ahead and begin to explore the sadness that occupies her mind, heart and soul. She is a happy, joyeous child who is full of life and spirit, but she tries hard to keep the sadness and anxiety out.

She struggles at times with sad feelings. We tell her that it's ok to feel sad, mad, relieve, scared, lonely and lots of other feelings. We've learned to not expect her to come to us. We have to keep opening up the door to conversation. Just because she tells us she had nothing to say one day doesn't mean she won't another day.

Feeling better

G is feeling better, probably due to the prednisone. Fever has finally broken. She is literally bouncing off the walls, actually. She is happy and full of energy, then suddenly will burst into tears. Ah, the fun side effects of systemic steriods.

Wood and I spent a long time last night researching her main symptoms. There are several credible studies about kids with recurrent pneumonia. One shows that out of 238 children with recurrent pneumonia (defined as more than 2 times- G has now had pneumonia 3x in the past 18 months), that 220 of the children had an underlying medical condition that needed treatment. The concern is that is the delay in proper diagnosis (several years for some children) causes permanent lung damage and loss of lung function that is irreversible. The tests her dr in Milwaukee ordered last week seem to be right on track, however. We're wondering, though, since she came down with strep several days after leaving Milwaukee, if that might cause irregular test results.

We have reached the point where we are actually hoping for abnormal test results -that a cause is finally identified. At least we could treat it. All this ambiguity and uncertainty is frustrating. No child should be this sick all the time. I truely fear for my daughter's health at times.

Sunday, May 25, 2008

Middle of the night ER visit

G felt cruddy all day yesterday. No cold symptoms, just the fever, joint pain, aches and fatigue. At dinner, she had a minor asthma attack. We've been alternating the tylenol and motrin to get control over the fever and make her feel better.

She woke up at 1am, itching intensely and it wouldn't stop. We saw the beginnings of hives on her feet, elbows and chest. I took her to the ER at around 1:45am. Surprisingly to us (and the dr), she has strep. They aren't quite sure about the hives. So, in addition to her regular meds, she's now on Benedryl for a few days, prednisone and Zithromax. Wood had strep over 2 weeks ago. He's recently completed his 10 days of antibiotics. I have no idea why she would be getting this now.

A, as usual, hasn't caught it and probably won't. G catches everything she is even remotely exposed to. A can share a bed, food, drinks and kisses with her sister and doesn't ever get sick. I'm thinking they should really study her immune system. A cure for Cancer or the common cold could be in this kids absolutely amazing immune system. I wish G had 1/8 of her immune response.....

We got home at 4:30am, $150 copay poorer. Now I have to get the scripts filled today. Thank goodness it's not respiratory. Other than the asthma attack, no signs of the dreaded cough at this point.

Saturday, May 24, 2008

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.

Friday, May 23, 2008

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.

Thursday, May 22, 2008

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!!!








Wednesday, May 21, 2008

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?

Tuesday, May 20, 2008

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.

Thursday, May 15, 2008

Wednesday, May 14, 2008

Racism

My paradox for the day...how can someone proclaim themselves Christian yet be overtly racist?

Racism is one of the great contradictions of the Gospel in modern times. I have come to believe that those who do not oppose racism publicly and rigorously are actually part of the problem and can contribute to further injustice. No one can be neutral or silent in the face of this great evil.

Through my daughter's adoption we have become much more aware of the passive (and some not so passive) racism that exists everywhere. We are being called more and more to be more actively anti-racist in our lives and actions. I feel so unqualified for this task, yet would do anything for my children. God doesn't call the qualified, but qualifies the called.

Monday, May 12, 2008

Posting at last.....

We really didn't fall off the face of the earth....really.

- Wood is still looking for work and is a top contender for a really good position. Pray that he gets this job - this has been a really difficult time for us.

- Much to my doctor's dismay, I had a less radical surgery than the bi-lateral mastectomy. I may have the big surgery later this summer - especially if Wood gets the job.

- We are all settled into our new house. I really like it, but there are a few issues:
1. It's ugly from the outside. Really ugly. My older daughter tells her friends it's the house that looks like a martini olive. It's an odd shade of green with a redish purple colored front door and shutters. And it seriously needs to be sided.

2. The house is COLD in the winter. Really, Really cold. We live in an area where this is significant. It was only 40 degrees today, and it's May 12th. We're still wearing winter coats. We can't plant flowers until early June due to frost. When you have 9 months of winter, keeping warm is very important. It gets too hot on the main floor of the house (it's a tri-level) where the bedrooms are, and it's freezing everywhere else. The livingroom, dining room and kitchen are above the garage, so we get the added bonus of having the floor be freezing as well as the rest of the room. We apparently don't have enough air returns, and it's affecting how the heat circulates. It won't be cheap to fix. We're looking at adding insulation and eventually we probably need to put a gas fireplace in the basement for supplemental heat.

3. Our home is the highest on our street, and we have a breath taking view of Lake Superior from our living room window. The Lake is about a mile from our home. The sun rising or setting is just stunning. However, that means my house is on a hill. Our yard isn't level anywhere....and is just the perfect angle that when the kids throw or kick a ball, it immediately rolls down the hill into a neighbors yard, or into the street. We need a fence.

Other than those issues, it's a great layout, perfect size, and meets our needs.

- We're off to Children's hospital this week for G's appt. She has pneumonia once this winter, bringing it to 3 times in the past 18 months. She's missed considerably less school this year, but we're still having issues. She's on 4 daily meds to control symptoms. She seems to have developed acid reflux and is also having other digestive issues. She has grown, but not much. She will be 6 in a month, and weighs 36 pounds, wears a size 5T and toddler size 10 shoes. It was shocking to see her with her peers at the Mother's day performance her class did last Friday. She is so tiny compared to them. However, she's reading at a third grade level (not bad for a kindergartener!), received a Christian leadership award this year, and seems to have more energy than she used to. I will take my blessings as they come.

I will post some pics soon, and it won't be as long until I post again...I promise.

Saturday, May 10, 2008

Mother's day - bittersweet



When I look at her,
I see you.

When her eyes twinkle,
I see your eyes

When I brush her hair,
I think of your curls

Your love for her made her part of me

And she will forever be a part of you.

Thinking of you today.....and everyday.