Things are moving!

We have Megan with us today. She is having pre testing done so she can be Brooke's bone marrow donor! She is being so brave. When I told her about it last night she said, "oh cool." Then she wanted to make sure Mrs. Bredeweg (her teacher) knew she'd be missing school. Her and Steve and doing an EKG and CXR now. Then we might break for lunch before some more tests. Macy was the other match, but they take the biggest one. Her other sisters are praying and Leah is to keep her class updated as to what is going on. I told Steve to take pictures. Can't ever have too many pictures. If all goes as planned bone marrow transplant will take place next week. Because Brooke's immune system is already low they won't pre treat her with any chemo. They will just give her the bone marrow. Then we pray it finds it's place in her little body. The MD said she may need this again in the future, but we just worry about today. Thank you for all the support and prayers. We are so blessed with all our girls, family and friends. Thank you all for the help.

Some answers

We are starting to get somewhere. 2 things happened this weekend that put Brooke into a "category" to help diagnose her. She got almost off steroids and she had a lab result go from 9 to 1500. Big jump, not necessarily good. She had really fast respirations and she is losing her hair (and the chemo has stopped). They feel they are quite certain of the type of immune disorder she has and blood was sent to Mayo today. Unfortunately the high respirations are from rhinovirus, "the common cold." No big deal to people with an immune system, but a big deal to Brooke. So we pray she can fight it off, or that it just goes away.
However the Bone Marrow Transplant shall go on!! So the donor will have testing done this week and Brooke has already had some testing done. She had an ECHO of her heart, a kidney ultrasound, a urine test and a chest xray. (They say that is just the beginning.) Steve and I felt so strange today being happy our daughter has a syndrome. But it means answers and a future. That is what we want. A future with all of our girls together! Thanks for the help and prayers. We will keep you updated.

Hospital time!

We had hoped for a plan this week. We were VERY disappointed when the plan never came together. We did finally get to meet with the Bone marrow MD and he didn't really tell us anything we hadn't already heard. They are waiting for test results to come back that take 4-6 weeks. He feels they might be back this coming week. Steve and I are sure that will not happen. We hope we are wrong. They are decreasing her steroids which makes her skin extremely itchy. We are trying to control that without the steroids. Being on steroids for so long has a whole host of other problems we are trying to avoid. Her lungs are doing well. She did have aspiration pneumonia and is almost done with antibiotics. Steve and I did request her chart be sent to U of M for a second opinion. It should be there Monday or Tuesday. The chart probably weighs more than Brooke but we hope someone can review it next week. Again we wait!

The girls got to come up Friday night and see Brooke and hold her. Tricia also came along so Steve and I could meet with the MD's and take the girls out to eat. It was a fun night.

Please pray for answers. We feel we are spinning out wheels at this point. We pray for direction for the doctors and for us as parents.

Brooke's weekend was a little rough. She had some difficultly with her breathing, was retracting and her oxygen sats went down. (sound familiar, that's what she did when we got here in December.) So she had a CXR and CAT scan. She was put on antibiotics for questionable aspiration pneumonia and given lasix to get rid of extra fluid she may have. She had a follow up xray yesterday with not much change and today had a bronchoscopy to get some fluid samples of her lungs and test it. She is not on oxygen any more and is breathing some easier. We hope to have some of the lung tests back today and the rest back this weekend.

We don't have an official "plan" yet from the bone marrow transplant team. We are hoping by the end of the week, but that's our time, not hospital time. We pray she gets over the respiratory issues soon so we can proceed with getting better.

I'm sure many of you are wondering how the wii tournaments are going. Well I have 1st place in ski jump and Steve has 1st place in hula hoop. Steve won't let me video him hula hooping, I don't understand why :)

Brookie is the cutest and best dressed baby up here :) With 5 girls what do you expect. We anxiously await a plan that we can share with everyone.

Praise God!!

We got word this morning that we have 2 bone marrow matches in the family! The hospital staff are so excited as are we! We have not told the girls who the lucky ones are so we'll keep that a mystery for now. This is scary for the girls as it is for Steve and I, but we know it's what Brookie needs. There will be big rewards when it's all said and done. We meet with the bone marrow transplant team next week. Steve talked to the social worker today to get a better idea of how all this works. We are aware this procedure has it's risk as do our girls. We ask when people talk to us about it and our girls are around tread lightly with what you say. They are ALL EARS these days. The prognosis is good, but please don't say things like "is Brooke going to make it" or hint towards a dim future for her. As long as we all have a great outlook and know this is in God's hands our girls do the same. They strive for the day they can hold their little Brooke again. We told the girls last night she will probably not come home til April and that was hard for them to swallow but they understand.
We miss you all like crazy and can't wait til we can see everyone and attend church and our normal funtions again. We are very cautious at this time of illness so we stay clear of many crowds (we aren't trying to be anti social :) Thanks again for the continued prayers! You are all so cherished!

Still waiting but in a bigger room :)

Mom and Brookie Still Smiling!

Still here, but we got a bigger room. Good in the sense we have more room, bad in the sense we are not going home anytime soon. One test has come back negative. This was a good thing, because the mortality rate of that was high! So, Praise God!! On Wednesdays the doctors and physicians assistants get together and "talk" about Brooke's case. Unfortunately it's complicated so there are many different opinions. The one common theme is that she has an immune disorder. What one is what they are checking for. It still looks like she may need a bone marrow transplant. Steve, I and the girls have been tested to see who is the best match. The girls were so brave getting their blood drawn. I am so proud of them! They are weaning her off her steroids yet to see if any of her labs start to come up. Today she has another skin biopsy to see what the crazy rash is. She has been through the tests and still manages to smile and be a fun loving baby. God is so good!

I don't know how to thank everyone for all the help! I am trying to send out thank you notes but I can't keep up!! Every one's kindness and generosity is truly God sent!! God has shown us daily that His hand is in this and He will see us through. Please pray for health for Brooke. If the transplant is going to happen she needs to be as healthy as possible. Pray for understanding of her siblings. It's hard for Ashley to comprehend all of this. Leah and Meg are older, but for them to feel God's peace and love, as well as me and Steve's love for them. I am so thankful Steve and I were brought up with such a firm foundation and Christian roots. Nothing can prepare you for this, but if you know where to rest your fears it's definitely tolerable. We will make the best of this situation. And as always, keep smiling!!!!

WAITING, WAITING, WAITING....

Brookie screaming! (with her eyes closed of course)

Brookie sleeping!

I guess I figured since we were waiting for results I'd make you wait too :) Sorry for the delay! Brooke's weekend was rough! Her skin turned bright red and dry, itchy. She was itching herself til she bled! Poor honey! So they increased her steroids to assist with that. However the steroids make her want to claw someones eyeballs out! (I've never been on them but I hear it's terrible.) So there have been a few sleepless nights of inconsolable crying. Today they gave her meds to calm her down and they will start to decrease her steroids. She did have some testing that showed she has cells in her body she is trying to fight off. (very complicated!) She may have gotten this from her first blood donor in August. The blood bank is trying to figure that out. There was nothing wrong with the blood, but her immune system was so low at the time that the other cells may have taken over. We are waiting for other results and a "plan" but at this time at least we got some answers. It looks like this was something she was born with. It's just kind of snowballed.

On a fun note.....she was screaming on Friday and I found a tooth!! Yeah Brooke! Her 1st tooth, and Macy has 2. All the better to bite each other with. I wanted to show you pictures but neither of them wanted me to take pictures of their teeth. Also Jessica stayed up here Monday night overnight for us. That was crazy!! Steve and I felt like we needed to be here, but it was so nice to be home. The girls were excited when they woke up and we were still both home. Thanks Jessica!!! The doctor doesn't plan on many changes for the next 7-10 days. Just to start feedings slowly. I have no excuse not to post just wanted to give you a heads up. Thanks for all the prayers and support in numerous ways. We have been discouraged a few times this week and every one's prayers mean the world to us! We have not forgotten any of you!!! God is in control! We just have to let Him.

Our View! Not to bad, but we'd rather see a field! Can't take the country out of the girl :)