Micah's Birthday Party

Here are some pictures from Micah's birthday party on Sunday, February 18, that I never got around to posting. He really likes the Packers! And in case anyone was wondering, no Micah has not outgrown his milk allergy. That is Rice Dream "Ice Cream".

Busy day.... early morning... food allergy study and other news...

This morning, the boys and I headed to Chicago at about 5:50 a.m. to get their blood drawn for their annual allergy tests. They also took an extra vial from each for the food allergy research study that we are participating in. I was so impressed with both boys. They were very courageous. Garrett said, "Hurts" when they poked him, but when I held him and said it wouldn't hurt for long and told him to look at the fish on the wall, he said, "OK" and sat very still. No tears from either boy! Micah went first and was a good example for his little brother.

Shameless plug: Karissa has even agreed to get her blood drawn this year for the research study! If you know of any family that does NOT have food allergies and is within a reasonable distance from Children's Memorial Hospital in Chicago that would be willing to participate, they are looking for "control" families. At least one child between 0-21 years of age and a biological parent need to participate. Each family member that participates gets a Target gift card for their time and the sacrifice of their blood and the family gets a gas card for their travels. They have 322 families (most of which are "case studies"), but they want to study 900 families with about half of them being "control" families (with no food allergies). This study could really help my boys and possibly THEIR CHILDREN.

Ok, shameless plug over!

The rest of the day has been spent trying to get stuff straightened up around here and preparing for Micah's birthday party with the grandparents on Sunday afternoon. Tomorrow Matt will be gone all day for a quiz. So, we are doing the party on Sunday afternoon. Since all of the grandparents will be here, Karissa also decided to ask if she could play her first prelude on the piano for church. She and her piano teacher, Amy, will be playing a duet of Amazing Grace. From what I heard at the end of lessons on Thursday, it sounds like she is ready.

For those of you who've been asking about Jillian, she is continuing to grow stronger. If you'd like to read more, you can check her family's blog at:
Team Bettendorf Blog. If you look at some of the pictures on the top and are wondering about the headcovering, Katie's mother-in-law, Heidi, is a Messianic Jew. Their family has so much really neat history!

Rachel is growing (and I should probably post pictures). She smiles and "talks" to us all the time now. Well, I'm off to do the less exciting, but necessary and therefore joyful work of washing dishes!

Bowling

Today we went bowling for Micah's birthday, which was yesterday. What I can't believe is that I forgot the camera! It was fun and the kids were so cute. They each had their own style. We even got shoes for Garrett and let him bowl. He kind of shoved the ball down the lane with Matt's guidance.

We played two games. On the first game MOMMY LOST!!!! Even Garrett beat me! (Of course, the three kids used those bumpers that pop up into the gutters on their turns... but still!) On the second game, Karissa and Micah tied, Garrett beat them by one point and Mommy came in second. Daddy won both games, of course. He's good at everything he does, so it didn't surprise anyone. ;) Rachel was just her naturally content, sweet self.

Next time we go, I'll have to get pictures. grrrrr.....

Latest news on Jillian

From Jillian's Mom, Katie:

Oncologist (cancer doc), Dr Singer, came by.

Small diuretic to be given to reduce edema (swelling) and encourage the poison (chemo) to leave her body.
If she has a fever (and she has) they will start broud spectrum antibiotics.
Her PMI (something midline something) has scooched over. Her heart is center instead of right side now. Her right lung is able to function better. This is due to the cath allowing liquid to leave her body.
Cath will stay in.
Plan is now to leave the vent and cath for several days and allow the meds to do their job.

Last night we had the same nurse that Jeff had the night before. She is very nice personally but not the best nurse for me. When you say "well, I know you like to do things the natura way but i am making a nursing decision." it just does not sit well with me. I still won. I got what I wanted for Jill, not what some nurse who goes home at night to her warm bed thought would make her job easier.

At one point they had to "bag her" where they use the thing you sqeeze with your hand. The vent wasn't making it for her. The issue was poor nursing in that Jill was agitated because they were suctioning. We stoppped suction and waited for the EXTREMELY SLOW nurse to fiiiiind the meds, draaaaaaawwwww the meds, throoooooww the trash away, geeeeeet the gloves, mooooosey over...then when she went to administer the morphine she either pushed too fast or the IV she put in earlier was not in properly. (It was *later* removed because it was not viable.) Either way Jillian FREAKED OUT!!! Her stats dropped, the vent wasn't making it, all the machines were beeping and I had 5 nurses and a doctor in the room in a split second. *I* freaked out and started crying. I mean, I was still holding Jill down and talking to her but my emotions went crazy and I was sobbing. One nurse patted me when it was almost over and said "It's ok." and I replied "When you have 5 nurses and a doctor in your room and someone is bagging your kid it's NOT ok." Ya, no one had a reply for that. The respiratory therapist gave me a hug and started with "I'm not sure why the vent messed up and that made jill freak out..." I interrupted her and whispered "No, the problem is my stinkin nurse was on a Sunday stroll instead of getting my kid the meds she needs!!" Denise, who will my RT the rest of my stay, rolled her eyes and nodded her head.

So this morning I fired that nurse. I am getting recommendations from my amazing daytime nurse, Jodi, (gonna have to name a kid after her) for whom I should request as my nighttime nurse.

So, although that was the WORST part of the night there really was no best part. I did get almost 2 hours sleep but when I wasn't sleeping I was all over dealing wtih Jill. And it was nothing big, just every time the nurses touch her I want to be there explaining. And Miss slow nurse could never do all the procedures at the same TIME!! ALL NIGHT we were messing with Jill. Like now, Jill will open her mouth on command to have her teeth brushed. It just makes it a more pleasant experience all around.

And I am greatly encouraged and I am confident and I am happy because *I* am building the BEST team for my daughter. I am not being passive and allowing bad care to happen. I am taking initiative and making a real difference in Jillian's recovery. I also go stand right in the middle of the doctor's debriefing at every shift change. I even interrupt and ask questions. They have not seen anything yet.

As you can see, Katie tends to be a bit blunt. But, she is actually a godly woman who is following her husband and training her children well. Your continued prayers would be appreciated. If you are interested in updates, please comment or e-mail me and I will send them to you. I will probably not continue to post updates here.

Updates on Jillian

Here are the latest updates from Jillian's Mom, Katie:

1. New news. Everything is being pushed up. The bone marrow biopsy (to check for leukemia) that was to be done Monday was done this afternoon. Chemo to start this evening. They don't know specifics of what cancer but they can at least start with the three chemo drugs they always use for tumors in this family. They are saying that they think it is Pleuropulmonary Blastoma.

Heidi came to visit and I am staying with Jillian tonight. She CAN hear us even though she is so heavily sedated. Every 4 hours they have to clean out her mouth...will finish in a minute.


2. Every 4 hours they have to clean out her mouth to prevent bacteria from growing and causing pneumonia. They call this "brushing your teeth" because they use a toothbrush that has suction to do it. So while the nurse was brushing Jillian did really well and didn't gag. Although she is heavily sedated she can still move and she will "cough" and gag and become agitated. So she did great and then Jeff leaned down and said "Are your teeth all clean now?" and she nodded!! It was so cute, cool and encouraging. So several times since then she has started to move her mouth and I say "oh, you can't talk right now. What do you want? Do you have an owie?" she shakes her head. "Are you hungry?" she nods "Are you thirsty?" She nods. So i explain to her that the food is already going in her belly but it is slow and then i take a spongey thing and ...more later

3. Goodness!! There is no rest here!! I thought I had trouble completing a omplete thought at home!! Here it is ten times worse. Everyone is very friendly and we are always doing something with Jillie so it isn't bothersome, just busy.

So anyway, things are looking up. New prognosis is 9-15 months of chemo. We should be out of here in 2 weeks barring any complications. The guess is Jillian will be feeling much better in 2-3 days as the tumor should shrink so fast that she will be able to breath again. The ventilator is forced air so it is causing the left lung to expand a bit, which I was pleased to hear.

First round of chemo is done. It involved pushing 2 little syringes and one drip for 30 minutes. Kinda anti-climatic really. The nurses were nice though. We had some good laughs about large families. My night nurse, Mary K, was one of **15** children.

Next round of chemo can not be started until her white blood cell count is up and that will not be for 3-4 weeks. She will lose all of her hair in about ten days.

Ummmm....what else? Gifts, cards, balloons all that kind of cool stuff would be GREAT!! We will need stuff to pass the boring days in the hospital.

Thanks for your continued prayers.

Please Pray for little Jillian

Please pray for this sweet little girl. She had been sick for about a week. So her parents, suspecting pneumonia, took her to the ER (on Wednesday). In a mind-numbing series of events, they found out that she had a large tumor in her chest that was causing her lung to partially (mostly) collapse and pushing her heart to the side. Yesterday (Friday), she underwent surgery to have the tumor biopsied, had an MRI and a CT scan and had several different IVs inserted in her hand and ankles. She is four years old and one of 11 children. Her family has a neat story (too long to tell here right now) and many of her siblings are adopted (two sibling groups). Obviously, her family is trying to process all of this and make decisions. The doctors think it is a very fast growing tumor and has probably only been there for one to two months. It is now about football size. This morning Jillian was intubated. Last night, the plan was to start chemotherapy on Tuesday, if she is strong enough. Her parents names are Jeff and Katie.

Pray for strength and grace for her parents and that God would be glorified.

The Colts Won!!!

Ok... I don't really care. (Sorry Laurie... ) But, Matt and Micah sure are glad! Our family all wore Packers stuff last night (except Rachel, who doesn't have any). I guess we wore it just to be silly and anti-Bears, which is definitely against the grain here in Chicagoland.

The best part of the evening had nothing to do with the game, which I watched very little of. I mostly looked at the replays when everyone else was making noise in one form or another! The best part was that we spent the evening with friends that we used to spend a lot of time with, but as of late have only seen at church. We were with 3 of our original 4 quizzers who are all adults now and their parents, plus a few other people, including another former quizzer. It was great to talk, catch up and just be together. Although we don't spend as much time together any more, we know each other well and love each other. They are like family, which is nice when your family doesn't live close by. I am so thankful that God has given us friends like that!