History

Sunday, December 31, 2006 6:55 PM CST

Happy New Year!

I started filling in Dr appts for 2007 back in Oct - that seems like ages ago!

We had a great time at Disney World and during the trip there and back. Mom rented the same RV that we had taken to Chicago so it felt just like home! The kids did not know that was our destination until we were pulling out and they were beyond thrilled. Of course we had to make one stop at Chicken Express to get Madeleine her fix and we were off.
Little Willie loves traveling in the RV too. He is used to going places but he did not know what to think about sleeping (and going potty!!) away from home. He is at least as stubborn as his mistress, so that gives you an idea of what we are dealing with.
The night we left he decided not to pee....that went on for about oh, 36 or so hours. He had been eating and drinking and playing like crazy...just no pee. Each time we stopped Terry or I would be out there with him telling him it was time to GO. He would just look at you like he was smiling and not pee.
Mom was just waking up the morning we were going to arrive at Disney and Terry had already walked Willie. When he came back in and told us the results William looked over at me and said "That dog is going to burst". I should have known then we were doomed.
He jumped on the bed and was telling Mom and Mad good morning when it happened. He burst.
Madeleine yelped and Willie jumped off the pillows (oh yeah, mom's feather pillows got tagged) and ran. He left a trail we were scrambling to mop.
It was hard not to laugh too much but I blame William. He predicted it and within minutes, there you go.
It did seem to break the ice for Willie and we made a big deal each time we walked him and he went potty.
People must have thought we were nuts.

Near the holidays is the best time to be at Disney. The decorations are incredible and you cannot help but be excited in the middle of the festive atmosphere.
At MGM Madeleine giggled like crazy at the "snow" falling in the streets and singing along with the music during the Osbourne Family Festival of Lights. That was unbelievable!
Terry and William took on the "big" rides like Everest ride at Animal Kingdom and the Tower of Terror. Madeleine, Mom and I stuck with Pirates of the Caribbean and Big Thunder Mountain Railroad.
Willie stayed at the Magic Kingdom kennel that is right near the monorail. Terry did the twice a day duties there to feed and potty. I cannot say enough good things about the folks there - they really treat the animals like little princes and princesses. Willie was already spoiled but now I think he might suspect he is a dog instead of a cat. Several cute little poodles came and went during his stay and Madeleine was watching that closely for possible girlfriend material.
One evening we were having dinner in Mexico (gotta love EPCOT) and Madeleine looks at me and says "look! My tooth is almost out!" I turned her towards me and used my napkin to reach in and I held it out and asked her "This tooth?"! Cinda - if you are reading - can you believe I pulled her tooth in the middle of the restaurant? :) She still loves that boat ride in there and could go on it over and over without stopping.

We are certainly getting to be pro's at traveling with all this medical "stuff". I took a bundle of zip ties and used those to hang her kangaroo bag at night over the bed. The hotel had the perfect light fixture that was mounted in just the right spot! I would zip tie the bag to that and put the pump on the table beside the bed.

I could not believe our luck with the weather. It rained the day we checked in and stopped that afternoon. We enjoyed very nice weather up until we were driving home. You know it has to rain since we have to completely wash the RV before turning it back in. ugh. We certainly get attached to that darn thing! I wish we could have kept it! The last stretch into home I was balancing in the bedroom trying to wrap some gifts while Madeleine and William slept.
We made it home just in time for Christmas. Was I ready? Nope. But it all came together nicely.

How is Madeleine feeling? I don't think she is feeling very good. She is very crabby and melts down easily.
The more tired she gets the larger the meltdown.
We saw her awesome nurse for solumedrol, methotrexate and hydration on Thursday. Friday morning she started running a slight fever and her cheeks have been very red. We stayed in and she has spent the weekend playing with her toys from Christmas. It's been perfect for her to lounge around in her pajamas and make a huge mess.

Now we are counting down days until next Sunday. That is when we head up to Chicago to see Dr. Pachman and she has Madeleine scheduled to spend the week there at Children's Memorial. I am anxious to get there and figure out something that is going to gain some ground on Madeleine's disease.
Her rash has been getting so much worse - her nailfolds are swollen and some have sores.

I really will get some new photos up - probably not this week though. :) There is so much to do before we leave for a week. Madeleine sees the eye Dr and Dr. An this week too. I am interested in what the eye Dr says because last time she had inflammation in her eyes.

Can you guys believe it will be 2007 in a few hours? Yikes! Where did the time go??

Please stop in and visit a dear friend caringbridge.org/md/lance. Lance became an angel on 12/28. His mom is one of the most compassionate and loving moms I know.

All our love,
Connie and Madeleine

Friday, December 15, 2006 9:59 PM CST

Did you guys think we had flown the coop?
.
.
.
.
Well, we DID! :)
For Christmas this year we are at the happiest place on earth...Disney World.

I do have loads to catch you guys up on but I can't get to it all tonight. Sorry!

The little Princess has not felt great. She is very crabby at times but hopefully she will start feeling better soon.

I am off to bed. Little Willie is tucked in at the Disney World Doggie Resort. We go visit him at least twice a day.

MORE SOON!

All our love,
Connie and Madeleine

Thursday, November 9, 2006 9:16 PM CST

Sorry to be so pokey lately - again!

Here's the shortest long version of the past few weeks I can manage! :)

As I mentioned before, our trip to Chicago was pretty darn awesome. Mom, Aunt Pat, William, Madeleine, and I left in a very cool RV that Mom rented for the trip. We all enjoyed it very much! Madeleine saw the bathroom and shouted "HEY MOM!! No more dirty gas station toilets!!" I don't think we had made it to Ft. Worth before she had to make a visit to try out the potty!

Kicking back and rolling down the highway!

Madeleine had to get meds on the way up and it was nice for her to relax in the bedroom.
I hung her IV bags on the cabinet handles over the bed and she could watch her DVD's and play.

You can see how it can get dicey by the time we have to get that IV push of methotrexate in!!

Mom, Pat and I were always on the look out for one of these on the road! That meant it was time to pull in for a "break"!!

It was interesting when we arrived at the hotel in Chicago to find out they did NOT have parking for a RV. This is after we had called and asked - ugh! A very helpful bellman phoned the hotel next door and arranged for us to park over in their surface lot. Whew!
Once we were checked in at our hotel we met up with several other JDM families from all over the country. We piled into a big room and enjoyed pizza and fun while getting to know each other. The kids had a blast and we almost had to drag Madeleine back to our room late that night for bed.
Terry's parents drove over from Detroit to be with us and we were all at the same hotel with several other JDM families. On the Saturday before the marathon we went on a tour of the research facility at Children's Memorial Hospital. Dr. Lauren Pachman there is an expert on JDM and gave us a very interesting presentation on her research. Our group was very impressed by everything we heard and saw! William was especially impressed by the research areas. I knew he enjoyed it but did not realize how much it really impacted him until just this past week. We were talking and he brought up how he hopes that he can one day be a micro-biologist and work in medical research in a place like Children's Memorial. I think that would be wonderful!
After the tour and presentation we all went over to DePaul University for a dinner party that our awesome marathon planners had put together. This was a very large gathering of all the families that had traveled in from all over to run or cheer for the runners. There was lots of squeals from the kids, even more hugs, and a few tears. Many of us had not met in person and it was very emotional to finally "see" each other.
We enjoyed another speech from Dr. Pachman there. One of her patients, Eric, introduced her and it was such a touching moment. Dr. P is so passionate about her work and she was just beaming listening to Eric. He is now 18 and is off to his first year in college - far from home and Dr. P! He is a hero to us all because of his tremendous strength to fight through a flare up in disease after being in remission for many years.

Madeleine and Eric at the marathon.

After dinner our adventure continued with a dash to the station to get the EL back to our hotel. OK, with Madeleine poor counts you know how the thought of all those germs just about drove me insane, right? Well, here I am carrying her and walking quickly because it was raining! We get into the station and on the train - of course, it's packed!!

Mad and her dear friend Nikki, a fellow JDMer from Houston on the EL after the dinner party.
I was trying to keep from having a panic attack over the germs when we have to get out and change to another train. There were around 17 of us and we were all trying to stay together in the Saturday night crowd - up and down stairs and then we went into total darkness!! There was no power in this one tunnel we had to walk down to get to the next train and it was completely black. Madeleine was giggling and we all just kept walking - some people had taken out their cell phones and opened them for a little light. What an adventure!
We arrived back at the hotel and tumbled into bed to be up at the crack of dawn to be downtown for the marathon!!
Mom, Aunt Pat and Terry's Mom, Jan, headed out very early with other friends to get our rally station set up. Our group was at the 16.5 mile mark and they were armed with cowbells to ring and cheer on the runners.
It was very cold and windy so I kept Madeleine in for a little longer, then I could not get her or William to wake up! Finally Madeleine started stirring and then when she realized that I had the marathon on TV and it was starting she got MAD. She was able to wake William and we got them bundled up and headed down to our tent in the charity village. We were able to go past the finish line and see runners coming in - that was so COOL!
I kept Madeleine at the tent because it was really windy and cool. Of course, she had other ideas in mind and wanted to dance to the band playing on stage near us! We had a real challenge keeping a coat on her, but she was having the time of her life. I don't think she has played so hard and partied like that ever. The kids spray painted their hair and then rang cowbells for runners coming in from the finish line.
We all were exhausted before we made it back to the hotel to collapse. I have more photos that I will share when I have time to get them uploaded.
The next day I took Madeleine back downtown for scans at Children's Memorial. On the way in she had spotted a bakery that we had to check out after our appointment. We had to get a box of yummy cookies to munch on the cab ride back out to the hotel when we were done!

That was all we did on Monday because we were all still very tired from our weekend of partying! It was pizza delivered and early to bed...until around 3 am when Madeleine was stirring in bed. She was burning up and spiked 103.7 while I was pacing the room and on the phone with Dr. An back here in Dallas. He sure is the best! If we had been at home it would have been a no-brainer! ER, cultures drawn, start antibiotics. We decided to see if she would respond to some naproxen quickly and if she didn't he said to get a cab and get our backsides to the hospital. Thank goodness it worked and her temp dropped nicely. She cuddled back up and slept peacefully...the rest of us didn't!
We had planned a big trip to the American Girl Place and she started freaking out when I tried to bring up the fever "thing" during the night. When I spoke to Dr An the next morning he said that if she was fine to take her to AGP and then back to the hotel and rest - nothing else. With those instructions, our gang headed in and met our friend Jacque there.
Mom had made us reservations for lunch there and when we arrived there was some quickie shopping because we had been clued in that you wanted to have your doll with you for luncheon.
That is very quick to have to make such an important decision as to which American Girl Doll to buy! She zoomed in on the Bitty Babies and was sold!
This brings me back to the whole If You Give A Mouse A Cookie theory!! If you buy Madeleine a Bitty Baby, you will need to get a starter kit. If you buy a Bitty Baby and a starter kit, Madeleine will want a Bitty Baby carrier -- you get the picture.
We herded Mad and the new Bitty Baby over to the restaurant for our lunch. It was really nice and the food was great. They have little boosters for you to have your doll sitting with you at the table. The waiters put little cups in front of the dolls - it was all very sweet!

Can you tell it was love at first sight when she saw her Bitty Baby?
After our lunch, Madeleine wanted to get an American Girl DOLL...not a baby. She had seen the doll's hair salon and was determined that was where her doll was going...but she needed the doll first. Since she had been so sick during the night her strength was just about gone by then and so Jacque and I went to the car to get Mad's wheelchair. I am so glad we had it because my back was aching from carrying! By the time we made it back with the chair she had selected her doll, some clothing, a dog for it, accessories for the dog and a carrier - and was waiting in line at the salon. The child can shop!

She was content to sit in her chair and watch the stylist work on her new doll. When that was done we made a beeline for the front door!!
This is Madeleine with the bellman taking her purchases back to our room!

Back in the room she tossed her clothes and was in her nightgown playing with her dolls before the rest of our gang made it in.
Mom, Pat and I got everything packed and ready for checkout the next morning while Mad played and rested. The next morning we loaded up the RV before heading in for Madeleine's appointment at Children's Memorial with Dr. Pachman. We arrived in time to hit the giftshop and have lunch before our appt.
They have a special microscope that they look at the JDM child's nailfolds under and photograph the capillaries. By looking at Madeleine's they could tell she has had this disease for a long time. Her capillaries are looped and have clots in them.
It was a very long afternoon but time passed quickly because we were so busy.
We left overwhelmed with information and will not have the final lab reports in for a few more days.
Dr. Pachman spoke to us about adding in some additional medications along with increasing some of the current ones. I hope that within the next few days I have some idea of what we are going to be doing.
We were all very exhausted by the time we went outside and into a cab to get us back to the RV. Madeleine was ready to get into the bed and relax while we hit the road.
When were back in Texas and getting close to home, it was time to start up her pre-meds. Terry was meeting us at Mom's with her methotrexate and we did not want to be too late getting it onboard. Here is Madeleine in the navigator's seat and getting her meds.

Almost home!! Terry was there with Little Willie and a big bag of food from Chicken Express.
Little Willie was so happy to see everyone and was all over the RV! He would have loved to have gone with us!

We were hardly unpacked before it was time to get back into the car for Houston. We saw Dr. W there and went over everything from Dr. Pachman's visit. He left all our orders the same until they could get on the phone together and go over her ideas for treatment.

Back home it was Halloween and we were in a rush to get ready for that. Brianna came over so Kim and I could take them Trick or Treating on the golf cart at Mom's. Both girls don't have the energy or stamina to go very far. By them going on the golf cart they were able to have a great time.

Last week ended with solumedrol and the usual weekly meds. This week we saw Dr. An and he has her scheduled for a swallow study next week. She is not thrilled and we are trying not to talk about it much.

Today it was time for Little Willie to get his hair done. We dropped him off before Trish came out to draw labs and do weekly meds. Madeleine sobbed like crazy getting into the car! "I can't bear leaving my ba-ba-aaabyyyyyy!!" We only had to call twice to check on him before picking up. The ladies at the vet are so sweet and when they brought him out Madeleine was thrilled. She was still hooked up to a liter of IV hydration and Little Willie immediately got himself tangled in all the tubing and everything was right in the world again.
Madeleine had requested a bandanna along with a bow on his tail. Well, he was not having the bow on his tail!! They took him back and brought him back with tiny little bows in Thanksgiving colors and print tied at the back of his ears. Madeleine loved it!

She just informed me that I had been online enough! It is time to color and snuggle.
Hopefully that catches us back up to what is going on here. Madeleine does not feel great.
We can see that more signs of her disease picking back up again. Each time they try to ease back on the meds it just comes right back.

There's a Strawberry Shortcake coloring book calling me - goodnight everyone.

All our love,
Connie and Madeleine

Thursday, October 26, 2006 1:08 PM CDT

Hey everyone!
Things have been complete chaos here - as usual!

We are on the road back from Chicago as I type. The highway is sort of bumpy so please forgive my typing!

If you ever have a chance to just see the Chicago Marathon in person, DO IT! It was the most amazing experience! We are all still on a high from all the events we attended there. I have many stories to tell you and we met so many other JDM families. Our dinner with Dr. Pachman and seeing her research lab at Children's Memorial was a chance of a lifetime. MORE detals to come after I am at home and sitting at my desk.

Short version -
we left last Wednesday from TX in a big 'ole RV!! Mom rented one for the trip and Madeleine and William have been loving it. Little Willie tried to stowaway with us but Granny would not hear of it.
We need one of these! It's the only way to travel. Madeleine was due meds last Thursday, so we hung the IV bags in the back of the RV where she was tucked into bed with a DVD and her babies. That is taking your treatment on the road in style!!
Details (and photos) soon!

Yesterday we spent from 1pm on with Dr. Pachman going over Madeleine's case. I learned so much and we have so much to work on.
Dr. Pachman found more vasculitis than we were aware of. I am very upset to report that it's in her mouth and throat so who knows where else. Dr. P agreed that it's very likely what has been causing so much of her GI issues. She drew a large amout of labs that will take 2.5 weeks to get all the reports back on. Dr P does research on Madeleine's disease so the information she gets from working on her case will help other children. She told us that she needed healthy RNA from healthy children to use in her research...I pointed out that I had a healthy child in the waiting room! William signed papers consenting (so did I) and he gave Dr P blood samples to help her with helping JM children. I am SO proud of him. Most grownups don't like having blood drawn much less several vials. WTG William for helping Madeleine and other JDM children!

The one MMQ I am going to leave you with for now is:

"This is HEAVEN!"
Madeleine sighed this leaving the American Girl Store in Chicago on Tuesday.

"This is scary."
My comment on entering the American Girl Store in Chicago on Tuesday.

I promise a big update soon - hopefully this weekend! We will get in tomorrow night and have Dr W in Houston first thing Monday morning.

Big TX sized THANK YOU to everyone that participated in the Chicago Marathon for Cure JM!!!!

All our love,
Connie and Madeleine

Wednesday, October 11, 2006 8:05 PM CDT

Another day, another infection....well, two actually.

Last week her repeat cultures came back with two different infections. The one from 2 weeks ago was gone and replaced by these guys. At first I was really surprised, but then she has been so crabby and just not herself. Guess that explained it all!
This was a week ago today and she was started on 10 days IV antibiotics to get it all wiped out. We are counting down the days left - 2!

She made it to PT again this week and even to dance this week! Some days are great and others not so great. I am worried because her nail folds are looking very red and inflamed again.

I am going to cut short tonight because today is William 13th birthday!! We just got in from dinner and the kids are playing in his gifts. Madeleine was so excited when the waiters and waitresses were singing to William - she was squealing and giggling.
In honor of William's birthday I have to drag out my favorite photo of William and Madeleine.
Only a very caring brother would do things like this for his sister. :)

Tomorrow is solumedrol, methotrexate and some IV fluids. Her mood already sucks and she is screaming at us all. Can't you just feel the love?
Monday and Tuesday are IVIG days.

Happy 13 WILLIAM!

All our love,
Connie and Madeleine

Tuesday, October 3, 2006 10:06 PM CDT

Things have been pretty much the same here. Madeleine has not felt well, she gets tired quickly and is then very crabby. Her PT commented on Monday how she was not even smiling - and Madeleine always smiles.
She had solumedrol along with her methotrexate and the usual weekly drugs last Thursday.
While her nurse was out she changed out her g-button. Since her tummy has grown since it was put in it was time to go a wee bit longer. That was interesting and Madeleine says it hurt! After it was not so sensitive she admitted that it feels better now that it's not mashing in like the old one was. This morning I was pushing her Cal-100, it's a calcium supplement in a powder form that you mix in water. Well, I guess she snapped the clamp down when I was not looking and I showered us both in calcium. It's white and I had white all over my face and hair. yuck!

I am really concerned that she seems to be showing more disease activity. She has been awake a few nights crying in pain. That is not a good sign. Her eyelids are getting more purple and the rash on her face, torso and arms is looking more red and intense.
I cannot tell if she is weaker. She is wanting to lay around more. She does not want to get up in the morning....well, I guess I really don't want to either! Granny picked her up a couple of new heat wraps and she has been putting those to good use.
Another thing is that she is very moody. Some of that is steroids but she just seems miserable at times and when she has done that before it's because she was not feeling good.
Her darned blood counts won't stay up on their own. We gave her procrit last Friday since her hemoglobin dropped. That makes her feel really bad - just piling on the reasons to feel bad.

Today I came up on obituary for Mickey Rooney's son. He died last week at age 59 after a 5 year struggle with dermatomyositis. That is pretty sobering...I wish there had been more media about it. The more people that know about it, the more research we can get done.

It's going to be a crazy week around here. William is going to a camp with his school for a few days. On Thursday Terry is having some hernias repaired. It will be nice for him to lift over 10 lbs again! I know he is ready to get it over with too.

Oh, and Madeleine would like everyone to know that Little Willie had his vaccinations on Saturday and he was such a big boy. I would not let her go and that had me in the doghouse with her! One of the vaccines is a live one and she cannot be exposed to live vaccines. The vet was wonderful to help me out with that part. Willie did not whimper a bit but he was not thrilled about getting blood drawn. It took a couple of people holding him for the vet to hit a vein...it took a couple of tries. yikes!
At that point I was relieved I put my foot down about Madeleine being there. "But he is MY BABY!!!" Her baby was fine and that is behind us for another year. You would have thought this was an infant getting shots the way she carried on about it. She actually told him that she would have taken them for him if she could. geeze!!

OK, well I am being called on to color. I wish I could sound happier but I am pretty down and more than a bit worried about how she is doing right now. The meltdowns are taking a lot out of her and all of us.

All our love,
Connie and Madeleine

Friday, September 22, 2006 9:03 PM CDT

What a week...I am glad it's over!

First off, Madeleine has an infection. The strain of bacteria is not very nice one at all. Our pediatrician said it's very similar to E. Coli and we have to take it very seriously.
Well, yeah! So he started her on an antibiotic yesterday and she started throwing up this morning. We do not want Madeleine throwing up - that just brings acid into the areas of her larynx and esophagus that are so tender and already burned. She was screaming and crying from the vomiting.
I spent most of the day trying to get it all sorted out and another drug to replace it with.
She had her methotrexate and IVIG yesterday so she already felt bad and this just compounded it.
As we were all (Dr's in Dallas, Mansfield and Houston) phoning back and forth to figure out a plan to change drugs, Kim, Bri's mom, called me. Bri started throwing up this afternoon - ugh!
Both Bri and Madeleine had IVIG from the same batch this week. Back at the end of Feb. they both started throwing up after IVIG and ended up on TPN for months! Bri is still on TPN and loosing weight. So, we do not know if it was the antibiotics that made Madeleine sick or IVIG.

We have been giving her some pedialite through her button to keep her hydrated and she did get the other 15 grams of her IVIG this afternoon. So far she has not thrown up this afternoon - keep those fingers crossed!

I am hoping for a quiet night and that this 2nd antibiotic will stay in and do its job. Tomorrow I had hoped to go visit with my grandfather. He is turning 95 and we have not been out to see him in a long time since Madeleine has been so sick.

That's the short version and I will make a better effort to give more details soon.
Oh, and remember that Barbie she got with the dog that poops? Well, now we have the Barbie with cat that pees into its litterbox. ugh! You guys can see where this is going, right? She has to play with it in MY BED! Why is it always in my bed??

All our love,
Connie and Madeleine

Wednesday, September 13, 2006 7:27 PM CDT

It's wild times as usual here at Camp Chaos.
When Madeleine woke up last Thursday morning she had terrible pain in her stomach. I helped her stand up and she had a "pouch" on her abdomen! It made a perfect little round pouch sticking out and it was to the side a little bit. She was having a hard time moving around much for a little while but that got better.
Her nurse was over to draw labs and give her weekly methotrexate IV and liter of hydration.
Since she was coming early I did not have to call the Dr - we let her see it and she phoned him.
We run her feeding overnight at a very slow rate. It looks like it leaked outside her gut and into that one area. You could mash it and it was squishy, feeling like it was indeed liquid in there. The Dr said to go on to Houston like we planned and show Dr W when we went in to see him. If it got worse we were to take her in immediately....that old "keep an eye on it". UGH!
When her medicine was done we left her port accessed until labs came back. Her hemoglobin has been getting low again it looked like she would need some procrit. We got a call the next morning that we could de-access because she just squeaked by at 12.2
YAY!! At 12 she gets a dose of procrit by IV.

Traveling on methotrexate day is so hard for her because she always gets terrible diarrhea for a couple of days. Not fun but we made it to Houston with only one stop. At this gas station Madeleine tells mom to get a scratch off lotto ticket. So, she tells her OK and they get one and we took off for Houston. Well, she won 20.00 on a 3.00 ticket! That was pretty exciting.

Dr. W did confirm that we are done with weekly solumedrol treatments - he said that it did help her strength quite a bit and was encouraged by her progress on that front. So, we go to solumedrol every other week - hopefully we will get a break between mood swings.
The "pouch" had spread a bit by Friday morning so when Dr W saw it he called our GI back here in Dallas. They discussed what to do and decided to send us over to another building for a g-tube study.
That was pretty interesting. It's done live and they put contrast into her tube and we watched it go into her belly. She got a real kick out of it and would curve around to see the screen when they rolled her over. Next went in barium (please remember that we were driving back home today! ugh!) and then a little more barium...oh boy. Then water to make her belly really full. The Dr pressed on her belly and we watched for leaks. Thankfully nothing showed up.
I was worried with all that mashing on her belly full of liquid!! I would have sprang a leak and it would not have been from my belly! TMI sorry!

We got a later start getting out of Houston than we planned. Madeleine scored that new Barbie at the hospital gift shop - it's the one that comes with a dog that eats treats, then poops the treats and you have a little scooper/stick to pick them up and put them in the trash. From there they are back to being treats and well, you get the idea...
She could hardly wait to get back home and tear into that baby!
I am glad we had a quick lunch in the food court there at the hospital because it did not take long for us to have to make a mad dash for the potty. Barium is as bad as methotrexate ...or maybe it was the combination. ewwww
We had to make a few stops on the way home. When she said "I need to go potty!" we had to be exiting right then.

When we got home it was late in the evening but she had so much fun in the middle of the bed feeding that dog treats and pooping it over and over. It is pretty funny I guess.

Her pouch has gradually gone down and it has not happened again.

While we driving back Terry called me to say that he had been to the Dr himself. He has a hernia - possible two and they are sending him to a surgeon. Never a dull moment here!

I started this about an hour ago and keep stopping to see what Madeleine has done now. Earlier she wanted couscous so she put water into a paper cup and heated it in the microwave. Then she dumped in the couscous. I was on the phone and missed that until she was telling me how yummy it was...not that she was eating it though. She wanted me to!
William was walking by so I thrust a spoonful into his mouth before he could say no. That sent Madeleine into fits of giggles. He did not like her couscous creation....who knows that other seasoning she put into it??

Just a few minutes ago I stopped her from "skating" in the bathtub. This involved wetting the bottom of the tub and then rubbing a bar of soap all over. That makes it slick enough to skate..."duh, mom!"

I better run and see what she is doing now. Tomorrow is solumedrol, methotrexate and labs over at Y Medical.

All our love,
Connie and Madeleine

Wednesday, September 6, 2006 8:24 PM CDT

OK, I know...call me pokey. Things have been pretty busy here with Mad (yes Tara, you are welcome to call her Mad - we all do!). The solumedrol has been making her tired and sick, then when that wears off she is angry and agitated. Last Friday completed her last weekly infusion - thank goodness! Now she is back to every other week and we will know more about how long that will go on after we meet with Dr W in Houston on Friday.

Let me give you an example of the sort of "stuff" she has been doing....

One day this past week I was in the shower. Now, stop thinking that because I took more than one shower last week but you know what I mean! I am in the shower and you figure a 6 year old should not get into too much trouble during that time, right? Not one jacked up on solumedrol....ugh. She decided to do a little "cooking" and prepared a cold soup.
You know those big fat cans of tomato sauce? Well, she dumped one of those into a big bowl and then went nuts from the spice cabinet. Full jars of some spices were included. I guess she was getting carried away during the process because there was Lawry's salt all over the stove, counter tops and floor. This was so bad that not even Willie was interested in eating it!
I got out of the shower and she was holding a paper cup (duckie Zoo Pals of course) of this mixture for me and a spoon. Since she has a history of antics similar to this I knew what would be waiting in the kitchen...or should I say ON the kitchen.
She really wanted to me to taste this brown sandy looking goop in a cup. ugh!!

A few days before she had prepared another soup using tomato sauce and I am not sure what else. This she made for my mom, William and Aunt Pat. This was also spooned into a Zoo Pals cup....was it yummy guys?? Should I tell her you did not eat it?? I definitely have something to hold over your heads!!

I am just really happy that none of the tomato sauce did not end up in the bed!

I really cannot go on without telling you guys this -- today is Andrew's birthday!! He is the big 18! Happy Birthday Andrew!! Wooo Hooo!!

I am going to make this short because we have to be up early for treatment tomorrow. She is going to get her IV of methotrexate and a liter of hydration. Then we hit the road for Houston.

We will leave you with a couple of MMQ's:

"I really don't remember much about my childhood."
She is so serious when she says things like this.

"This kitchen is so futurist. I don't know how long it's going to take me to get used to the future....when the future comes."
???? I blame video games.

I will update sooner - promise!
All our love,
Connie and Madeleine

Thursday, August 17, 2006 10:15 PM CDT

Time is flying -- or is it just me?

Before I get sidetracked can I just tell you this?? FORTY-ONE LBS! Can I get a yahoo?
Today she weighed in at a record setting 41.5 lbs!! Yahoo!

Getting solumedrol once a week is not what I would call a piece of cake, but I have seen worse. Just about the time Madeleine is feeling more like Madeleine, it's time to do it all over again.
She starts getting sick during her infusion, this is in spite of all the pre-meds. This week she did not throw up - but she sure tried. Then she fell sound asleep in a comfy chair at our nursing office. She slept through finishing up the solumedrol and then thru getting her methotrexate. They were giving her a liter of fluids and she opened her eyes and said she needed to go potty -- NOW! She did not have to tell me twice! The poor child! Horrible diarrhea started and has lasted most of the day. I glad she gets that extra hydration with all the meds because otherwise she would get into trouble by bedtime.

Last weekend the circus was in Ft. Worth and we went. Mom had ordered "Circus Celebrity" tickets ages ago. They are the ones that if you don't buy them the day they go on sale it's impossible to get them. Thanks Mom/Granny!! They came over during the show and took the group of guests with those tickets out and they paired everyone up (I was with Madeleine) and you had a clown or dancing girl - we had a dancing girl. Madeleine was thrilled! They had taught the audience a little dance and now Madeleine (and the others) did the dance for the audience. It was awesome!! Then they put us in these little cars and we rode around the area a few times, stopping for a little break to watch some acts. It was just a blast and definitely the best time we have ever had at the circus.
I was a wreck (naturally) trying to keep Madeleine from getting in the middle of a crowd...try that at a circus..UGH!

Her counts have been down a little but Dr. Goldman is keeping tabs on her so I am trying not to stress.

The girl got to hit the pool with her physical therapist yesterday. They both seemed to have a great time singing and exercising. The doc said to cover her button while she is in the pool so we put a monster sized tegaderm over it with a small aqua guard over that...works great!

Since she got her infusions today I am not allowed much time on the computer. She has informed my that my time is UP.

Before I go tonight I have to pass on three pretty good MMQ's --

"If this was a circus, my hash brown would be the stars!"
She was really enjoying her breakfast for dinner...eggs, bacon and hash browns.

"Ooo William, you got the special pee flavor!"
Poor William, his shave ice was pineapple flavor so the syrup is bright yellow.
Madeleine had a good laugh over teasing him!

"There is no such things as superstitions! They are not REAL so leave me alone about it!!
Don't you realize that we have two black cats at home and nothing bad has ever happened to us??!"
Wait...you mean it's been the cats all along?
Just kidding! Madeleine was performing a dance that she needed to use an open parasol to parade around with. Mom asked her to close it and that sure set her off and we got that little speech! Steroids are so much fun.

I am being reminded of the time...she is pointing at the clock and giving me that steroided up look. yike!

All our love,
Connie and Madeleine

Saturday, August 5, 2006 4:05 PM CDT

Today I want to give you an example of why I call our home Camp Chaos.

Friday 8/4 bright and early -
Madeleine is awake but feels awful. We had her appointment in Houston yesterday (details will follow on that below) and she is very tried and crabby. She was laying awake (in my bed)
and coming up with excuses for not taking her medicine and getting ready to go. We had to be at Y Medical for infusions at 11:00. By 10:00 I had begged, bribed, and demanded her out of bed and to get clothes on and she was still standing her ground. I was soaked in sweat (I know, not pretty!) and quickly losing patience. We had been through a whole scene where nothing I came up with for her to wear was acceptable. "Then you pick it out!" I said..."no" was the reply. I finally put a shirt on her and was trying to get shorts on when she started thrashing and crying. "I am never wearing this! Don't you know this is BAD parenting??"
I wish I knew where that got started but if I had a nickel for every time she said it to me....you know the rest.
We finally agreed on the shirt I had managed to get on her and pajama pants. What would it hurt? We were going to the nursing office for her to get medicine and they certainly would not look at her and then me thinking "what is this mom thinking?". I was dragging her and all the usual junk out to the car to load up when I was stopped in the garage by child #1. I will protect his identity here because I don't want to hear the fall out when he says "I cannot believe you wrote about that online for the world to read!". He proceeds to drop a very big bomb on me about something that happened 2 weeks ago. It came as a complete shock since we had already dealt with the "thing" that happened and I thought everything was ok. Don't think the worst, it does not involve anything medical, or legal, and no one was injured. It was just a load of hassle and money (ugh).
His timing could have been much better..like telling me TWO WEEKS ago when it happened.
I filled him in on how he was going to solve this new issue and continued to put Mad and her stuff in the car. Since we were delayed in the garage she had started crying again. It was getting hard to figure out what was wrong so I just keep pressing on to get things over with.
After a big ordeal about wearing a seatbelt we finally made it for her medications.
I was well on the way when my low tire pressure gauge dinged on. Great...one more thing, right? Oh, no it was only starting gentle readers...
Around that time I noted that I had less than 1/4 tank of gas. Normally that is not a problem..well, it is if you have to go inside to pay and you have a immune suppressed melting down child and it's over 100 F outside. My bank card was cancelled due to the incident that shall not be named from child that will not be named above. The bank did it by mistake but they don't just turn them back on and I am having to wait for a new one...there I am trying to be patient again!
So, if I push some buttons and it claims that I can go 60 more miles on the gas remaining. Yay! I can do this, right?
The sobbing from the backseat has been getting softer and I think she was actually starting to feel bad about things. I am still the worst mother in the world so don't get excited.
Just as I was exiting from the highway the low fuel lights up and dings.
We arrived and I unloaded Madeleine and her stuff to the IV room so she can get her port accessed, labs drawn and medications going. Now she looks really ragged in her mismatched clothing and puffy red face from screaming all morning but she is smiling.
She greeted her caregivers and took her specimen cup and skipped off to the ladies room.
I was about to leave and get fuel and deal with the tire issue when she popped her head out of the door and asked me to come help. There had been a little accident so I helped her then ran out for a quick search of the car for any back up clothing. I could not believe it but I did have a spare change of clothes - including undies! Are you thinking what I was thinking as I went back inside to get her changed? I figured that I was going to get tossed out with the faded too short leggings I found in the car...nope! She changed without saying a word about the clothes and went out to get her port accessed and get started.
I told her that I was going to run and get gas and she asked for some Chinese food. OK - I will grab that too.
The gas station is very close and I pulled in all ready to get on with things. I had put some cash in my pocket because it's not easy to get cash without a ATM card. When I pulled out the cash in my pocket it was not the 10.00. It was 1.00!!
I kept telling myself that I was not going to get angry. I would just call Terry, Andrew and Mom and see which one could come over and help me out. Our bank with hundreds of locations but none that I can spot when I need one!!
I was about to drive off and I tried all my pockets again and there it was - the 10.00 plus a 5 I did not realize I had! OK! Now I have 16.00!! I can get the gas, food for Madeleine and something cold to drink because I am so wilted at this point.
I run in and pay for my gas and I grab me a Diet Pepsi. I was a penny short paying for the Diet Pepsi - you know most places these days will tell you not to worry about a penny but not this guy. I ran out to the car and started the gas while I searched for a stray penny - I found some stashed in the backseat. Then ran back in and grabbed my drink - I think it was the bestest and coldest Diet Pepsi I ever had.
I got Madeleine her sweet and sour chicken (sauce on the side) with steamed rice and dashed back...just in time for her to get sick. I held the trash can and grabbed tissues and it was not pretty. It's time for her not to always feel so crummy already! I know she has to be tired of it!
She has been getting pretty sick each week with this increased dose of methotrexate but this week she was very sick before they even gave it to her. Then there are the increased mood swings since switching to solumedrol (IV steroids) every 2 weeks. That did not take long to start back up! I was trying my best to be patient and work with her to get through the meltdowns.
She did not feel up to eating much of her food. The awesome folks Y Med got her everything they could for the nausea and vomiting and worked hard to make her comfortable. She rested and watched a movie then until she was done.
As I was loading the car back up I saw something glisten on my rear tire. When I looked closer I saw that it was a nail. I had to start chanting in my head again "I will not get angry..I am just going to deal with it...I will not get angry..."

I will spare you the rest of the day because I think that is a fair enough example of life here at Camp Chaos. Rest assured that as soon as I took Madeleine straight home and tucked her back into my bed. Lights off and TV on but muted.
Oh, wait....no, there is more.
I hooked her up to the pump for her feeding. If you are familiar with the kangaroo pumps and sets then you will appreciate this part. The bag has a top/lid thingy attached to it and you fill the bag through that and then pop the lid on. I dumped the formula in and then had to run for the phone. I hung the bag and took care of a few things before coming back and I grabbed another container of formula and reached up and poured it into...the closed lid. It pops down into the opening and I was not paying close attention so I got a shower of formula.
I will not get angry...I will not get angry...
After a bit I had her hooked up with a nice slow rate to get something into her belly.
Later that afternoon she started to get agitated again and threw everything off the bed and had a jumping and screaming hissy fit. The jumping part was nice because that just helped push out the contents of her stomach when she came down on the tubing and it popped apart. Not just formula was leaking out but her stomach was leaking from her end and the jumping made it sort of squirt....well, you get the picture.
Oh, I was angry now. Terry was just walking in from work as I was putting her in the shower and cleaning up MY bed. Why is it always in my bed?
In two shakes of a poodles tail I had her clean, dressed and hooked back up her to pump.
I tucked her into my now clean bed and left her with Terry while I went to the grocery store.

That is the short version of a day here at ole C.C.

OK - now on to business!
We saw her doctor in Houston on Thursday. He continues to see more increase in disease activity. The plan is now to increase her IV solumedrol to once a week for the next 4 weeks.
He wants to see if it will make any difference to the pain and burning in her throat. If it's infection or if it's disease - we have to get it sorted out and do something since it's getting worse. Since she is getting weaker the solumedrol should help - and the increased dose of methotrexate should be building up in her system too. She is falling a lot more and I know that is also because of weakness. All this better work for the misery it puts her though....

We go back in a month for him to see her again and decide if and what we add to her treatment. He threw out cyclophosphamide (cytoxan) and rituxan again to consider.
At that time he will also decide if she should have her lungs looked at more closely.
It was a very long appointment and we went over loads of information. In fact one of the awesome nurses took Madeleine out to her desk at one point so we could discuss things without her present.
He said that since we are suppressing her immune system even more, any infection could get worse - really worse. So we will have to be keeping a close watch on her and vigilant about keeping her from catching anything as well.
We are also starting her back on plaquinil since I can put it through her button.
Along with all these changes and increased risk of infection, it will all take a toll on her blood counts again and her GI issues. :(

Thank you for sticking with us though this ordeal. I would not wish JM on my worst enemy!
The 'roid rages are going to be miserable with her getting solumedrol weekly but we will just deal with it.

All our love,
Connie and Madeleine

Thursday, July 27, 2006 10:09 PM CDT

Last time we spoke we were getting settled into like with a mic-key button. It has been a learning experience going from the IV BOWL and back to the IV POLE.
When she was on TPN I would pile the bags and two small pumps into this giant Tupperware bowl that she would slide around. Then at night we would put the IV bowl in bed next to her. Now we are back to a bigger pump that is on the pole and the formula does not come in IV bags. Just a little bit of an adjustment but things are going well.
We have to give her the feeds slowly over time. When we tried bolus feeding she had problems so we have to use a pump and take it slow.
Something triggers the burning sensations in her throat and she gets miserable. Also, she still fights through quite a bit of nausea.
They switched loads of her drugs to oral so I just crush everything up and put it through her tube - that part she is happy about!

The stitches came out with no problems. They were freaking HUGE and out of this heavy wire material. I swear when he was pulling them out it was like one of those magic acts where the scarves keep coming out of the guys sleeve! The girl just laid there and stared him down through it all. He has us taping the button in place for now while it continues to heal. That will keep it from turning too much yet.
She does not want me doing anything with it and hooks herself up. I am really proud of her being able to do it by herself. We put everything in the bag and I hand her the tubing set and she plugs it in. She has learned how to work the pump and adjusts her rate if she starts feeling sick.

The doctors spoke to each other by phone on Tuesday and we see her doctor in Houston next week. I tried to get some info by phone but he had his nurse tell me we would discuss everything next week. Oh well - I tried!!
They have been concerned because she has an increase of disease activity and that is why we have stepped up IV medications. I really hope things can get better without having to start her on cytoxan.

Today we spent the afternoon getting IVIG and then her IV methotrexate....not our favorite day of the week! She fell asleep on the way home and then woke up very angry. Tomorrow we are back for her second half of her dose and next week she will be due for more solumedrol when we get back from Houston.
She has really not felt well and we have spent loads of time laying around reading. In fact she seems happiest tucked in while someone reads to her for hours! We have books on her ipod but she prefers having someone read in person.
Between appointments and reading we never seem to have enough time.

Madeleine said to thank everyone for helping keep Pretty Piggy clean and fed. She said it's a very big job and she appreciates all the help. :)

It's time to say good night - the girl is ready for me to wrap things up and get to bed. She does not have to ask me that more than once!!

I am going to make an effort to get some new photos posted!

All our love,
Connie and Madeleine

Sunday, July 16, 2006 9:48 AM CDT

I wrote this last night and then fell asleep with Madeleine. I had plans of posting it after she was asleep! :)
-----------------------------------------------------------------------------------------------
The girl was discharged Friday afternoon. It's been interesting to say the least. She has to be very gentle getting around since she is very sore. The pain medication does not seem to faze her - I hope it's at least taking the edge off.

She was very pleased yesterday morning when her favorite nurse at Medical City came into her room. We were thrilled to have her caring for Madeleine and she trained me on what to do to care for her button. This nurse is so incredible! She went and got a mic-key button and let Madeleine inflate the balloon with air using a syringe so that she could see what it was like inside her belly. That helped her cope so much!

Thursday had to be the longest day of Madeleine's life - and I think it was for me too.
She could not have food or water because of her stomach being "asleep" from the surgery. We had one very unhappy child. She tried everything in the book to get anyone to give in and give her just a drink. Finally Dr. An worked with her for just a tiny snack...of course it came right back out the drain from her belly. I know, TMI....but it was entertaining for her to nibble on a goldfish cracker and then see it creep down the drain tube into the jar from her belly.
They all told her she would throw up if she ate or drank, but she didn't. Then when the clock hit 6pm she had the menu and started ordering everything in sight. She tasted everything and I think she ate more than she has in months...maybe we should have held her food for almost 24 hours sooner! NOT!

It was good to get home but she is very tired and weak. I'm sure as she recovers that will start getting better.
The stitches come out on Monday!

We are heading back to bed to snuggle while she is interested!

All our love,
Connie and Madeleine

Wednesday, July 12, 2006 8:06 PM CDT

I only have time for a quickie tonight!

First I have to send a shout out to my Auntie Pat! It's her birthday today and since she could/would kick my butt I won't tell you how old she is. Aunt Pat is going to go with us to Chicago for the LaSalle Bank Chicago Marathon in October. ROAD TRIP! She and my Uncle Gerry are awesome supporters of Cure JM and are devoted to helping us find our cure.

Now on to the girl -
We met with Dr. Renard this morning and he is putting in her g-button tomorrow morning.
He had a cancellation and was able to fit her right into that slot. Everyone was concerned about her losing any more weight so it's good that it's happening so fast.
Starting last night she was following me around telling me over and over "I am not getting a g-button.." Did I mention she did that over and over? UGH!

She is OK with it now. Earlier today she was NOT OK with it. The shouting started early:

"This is just bad parenting!! Do you hear me?? This is JUST bad parenting!!"
"You are not fit to be a parent!!"

Thankfully she had moved on from the guilt phase and is now being sweet and innocent.
She picked out her pajamas for tonight carefully. They are soft and have a cropped top. She told me that is so that in the morning I can just put her into the car without having to wake her. She said very seriously to just tell them "Here's my belly, I am not changing clothes. So, just deal with it!"

What is worse!? The guilt because she is so mad or the guilt because she is being so sweet?

I dropped her off at the dance studio with Ms. Jane this afternoon and ran all over town taking care of errands. Dr. R said that he will let her out Saturday if everything goes well so I had some shopping to do. She told me that if she had to go thru this then she deserved a reward.
I have a load of surprises all packed up for her after she is awake and ready tomorrow.
She wanted a hand cranking pasta machine "like the lady on DIY uses with her clay".
Done!
I also got her the Rachael Ray Food TV DVD's to watch. She is hooked on Food TV lately so that should keep her happy for a little while. I know this will be a big surprise because she is not expecting anything like that.
Hobby Lobby had loads of sale stuff so I loaded her up with new stuff to paint and color.
I didn't forget the snacks - mini marshmallows and goldfish....I wonder what they would say if I took her faux campfire and let her roast marshmallows in her hospital bed? Ha!

Little Willie is already stressing because of the packing. Madeleine keeps talking to him in a sweet voice explaining that she will be back home as quick as she can. He looks at her like she is understanding every darn word of it and saying back "Don't go! Please don't leave me here with all these kitties!"

I have to go pack her some clothing since I have all the "junk" loaded up. I will get Granny to leave a guestbook message to let you know how the surgery goes. If she is on the road then I bet I can get Kim and Bri to do it.

Madeleine says that she just hopes someone is going to take care of her Pretty Piggy while she is gone.

Wish us luck -
All our love,
Connie and Madeleine

Tuesday, July 11, 2006 4:46 PM CDT

Yes, I have become one of "those" mothers.
"Mom, can I have such and such?" Yes, of course.
"Mom will you cook ___fill in the blank with anything here at 9pm?" Certainly, let me go to the store and buy those ingredients thru a blizzard and prepare that for you.
Anything she wants as long as she is happy...please don't tell the boys!! ;)

"Mom, I want to roast marshmallows...but I don't want to get out of your bed to do it."

Relax...there is no fire involved. Have you guys seen the Hershey's S'mores Maker?
It's a plastic campfire with a lightbulb in it to "roast" the marshmallows. You put it on the end of a plastic stick - that actually looks like a little twig and you are in business!

The girl is sitting in the middle of my bed heating marshmallows over her "campfire".
Sure, I would prefer this to be in the kitchen or at the table...but, you have to pick your battles. Andrew just came in and asked how the s'mores were coming and she told him to "shut up". It's not like she is going to eat these. We will have to eat them so I reminded her that she better not be mean to him since we need him to EAT THEM! She smiled sweetly and told him to come back in 10 to 12 minutes for one.
Her watching so much FoodTV has made things interesting. One night she scrambled eggs like Rachael Ray and then told me to eat them. Well, it was 10pm and I am not a big egg fan anyway...
Then another night she wanted toast but not from my "fancy pants" toaster. It had to be made in a pan on the stove. Needless to say, I did not do it correctly and she had to make it herself. She said that it was so crispy and prefect! "All it needs is to toss on some fresh garlic and a bit of salt and it will make perfect croutons!"
She gets these ideas late at night - always!

All that pretty much sums up the last few days. She feels miserable and we are doing our best to keep her happy.
Dr. An had us stop the TPN last week after our visit with her pedi rheumatologist. He agreed that we need to get her nutrition in her by another method.
She has lost another lb since Friday when we were at Y Medical. Today she weighed in at 39 lbs. - yikes! We were so happy to break that big 4 0 and she was holding steady at 41. When you are this tiny, 2 lbs is huge!
Tomorrow morning is her appointment with Dr. Renard. We are hoping he can get her on his schedule quickly for a g-button before she loses more. Everyone is keeping close tabs on all this so we will not let her get into trouble. We are being careful about hydration.
Friday she got a liter of fluids along with her solumedrol, methotrexate and procrit. I think getting her good and hydrated helped with the side effects too.
Today we gave her another liter; she was looking pretty bad. Her eyes get a sunken look and she is very weak.

I just glanced over and you know what comes with making s'mores? Graham cracker crumbs all over the place...what place? MY BED - she always does this stuff in my bed.
Before anyone asks --- I have a table under the "campfire" so we are not going to burn anything. I knew you might be thinking that because everything seems to happen to my bed.

Since we have not been accessing Mad's port every day, she was able to get into the pool some. I am not sure who was more happy about that, her or Little Willie. He is a super poodle when it comes to swimming. He bugs everyone to throw his ball over and over for him to swim and chase down. It's been a nice relaxing activity for Madeleine to get out there and float around some. Night before last I put one of her bikini's on Little Willie! It was a challenge to get it on him and then Terry and William were outraged. The person I wanted to make happy was Madeleine, and she was so pleased. She said he was the cutest thing she had ever seen. He swam in it for a little while and everything was good until he went potty. That was a bit dicey and Madeleine decided he was better without the suit - her suit! When it's her stuff she worries, if it was my bed she would have just shrugged her shoulders and smiled.

I have to go put out the campfire because she is done cooking s'mores for Andrew.

There are loads of photos I need to upload - hopefully when things quiet down around here I will get that done.

All our love,
Connie and Madeleine

p.s. Madeleine says to feed and wash Pretty Piggy!

Tuesday, July 4, 2006 9:38 PM CDT

We were in Houston yesterday for Madeleine to see her doctor there. The main doctor that heads up her care is there and he works closely with a handful of specialists here to cover all her needs.
For weeks there have been subtle signs that she was not doing so great. Sure, her aldolase and CPK have been ok...but when her muscles were destroying themselves her labs were fine. In her case it's hard to depend on those numbers. The doctor noted how she was not as strong as she has been in the past. I was afraid of that but wanted to believe that maybe it was due to her having the recent infections. Unfortunately it's not, he said that she is in a flare up of disease activity.
Her rash is much worse and continues to spread. It's on a good portion of her face and now on her elbows, knees, and hands.
We had a long discussion over her GI issues. He wants her off TPN soon and said that we will have to see about other options if she cannot eat.

First let me go over the plan for treatment.
They are going up on her solumedrol - instead of one infusion once a month, she will get one every other week.
Her IV methotrexate is going up. It's still once a week but the amount is being increased. That one really bothers me since she has crummy effects from it. Her hair is so thin from it and she get so agitated after she gets it. The nausea is awful and she just feels miserable...I guess that will just increase with giving her more. ugh!

Both of these changes increase her risk of infection. They also will be hard on her blood counts that we already struggle with. I am so glad that Dr. Goldman is on our team now and will be keeping tabs on that. I imagine that will mean keeping her on the medications to keep her counts up.

Then he told us that it's time to get to the bottom of the problems with her larynx. IF it's vasculitis then he said he only have one drug option to give her that will help it. He said that if that is what we are dealing with we must know and it would require cytoxan. A paper bag to breathe into would have helped me at this point of the visit. It was one of those times where you feel like you are not really there but you are...sort of like it's not really happening.
He brought up that maybe this is all still reflux - which I have discussed with Dr. An many times. How can she possibly still have reflux? She has been given so much medication for it that it's hard to believe it's still acid. We have to address all that and get some testing done to get us firm answers. If it is reflux then he wants it fixed.
He said that he wants her off TPN and if she is not capable of taking in nutrition by eating then she will have to have a tube. During this part of the discussion Dr Warren was sitting on the exam table next to Madeleine. She had been taking all this in and knows exactly what he was alluding to. He made a little motion to get across to mom and I that he meant a ng-tube up her nose and down into her stomach. Her eyes narrowed and she gave him quite a glare as she slid down the table a little bit away from him.
He laid out all his reasons for this and why he feels it is necessary. Since everyone was closed today I have not been able to talk to Dr An yet.

OK, so this all pretty much sucks right now. I want her to get a break. This downhill trend probably started back sometime in February. It's never really hit Madeleine quickly, when she has active disease it's always been a slow progression. We have to take her back to Houston in just a few weeks...it's strange to think about how excited we were a few months ago to only be going once every 8 weeks. I guess it won't do me any good to rant and get all negative...as much as I would like to!

Today I let her lay around and rest. She was tired from the drive and has been pretty crabby at times. I know she is stressed and has been digesting all the stuff from yesterday. She tries so hard to eat and I know that she wants to be able to do it.

Madeleine wants me to remind everyone to feed her piggy and spray it off. Her piggy's name is Pretty Piggy. She said that she appreciates all the help caring for it.

It's time to try and get my night owl to bed.
All our love,
Connie and Madeleine

Wednesday, June 28, 2006 8:49 PM CDT

I just wrote a nice long update - only to have it disappear. ARGH!!
It was even written offline and then I had to copy and paste...it's just not my week!!

Things are quiet. Madeleine still runs a low grade fever but the docs lean towards that being disease related. She is still on IV antibiotics - we are down to just clindamycin every 8 hours.
It comes in a little ball called an eclipse - you hook it up and it infuses all by itself over 30 minutes. I like a pump better so that the beeping will remind me that 30 minutes have already flown by.
That darn infection does not stand a chance!! I hope she is well done with it.

Tomorrow and Friday she is getting IVIG. I ran her to Hobby Lobby today to stock up on stuff to keep her happy and busy. It was a typical trip to the store with Madeleine. She puts loads of stuff in the cart and I end up putting most of it back on the shelves.

The other night she saw this lady doing one stroke painting on home shopping. UGH!!
It was just amazing to her and she spotted that whole line of stuff at Hobby Lobby...it took some doing but I convinced her that we were not getting that stuff today. It's the sort of thing where you have to inve$t in their paint, their special brushes, their accessories etc....
She told me I was delaying her career as a flower painter. It's always my fault...

Gotta make sure I have everything done so we can be out the door early tomorrow.

This little night owl wants me to remind you to please spray off her piggy (above) and feed her an apple because Madeleine is afraid it might get hungry in the night. She wondered to me if she could get a little bag of TPN for her piggy. Oh, boy...

All our love,
Connie and Madeleine

Tuesday, June 20, 2006 11:58 PM CDT

Staph and strep and infections oh my!

The girl has multiple infections was the word I received late this afternoon. Our dear Dr is still confident that we can beat this at home with IV antibiotics. I told him that he is not the one that gives the vancomycin over 90 minutes every 8 hours. She gets very agitated and mean after about an hour and that sticks for a couple of hours before we get regular Madeleine back. The rocephin is every 12 hours and we push it over 30 minutes and it just seems to make her feel tired and yucky - much better than mean and angry!
The lab is still sorting out sensitivities and the doctor called and spoke with the micro-biologist himself to go over the information so far. He said that tomorrow they should have all the information to be sure we have the correct antibiotics or if we need to add or change up.
She has one strain of staph that is probably the same one that she was just in the hospital for. Then there is a strep viradans and who knows how that ended up in her bloodstream! UGH! The Dr said not to worry about the 3rd one because everything she is getting for the other two will take care of that one....ok, it's not like I am stressing...right?

I guess we did catch things just in time though because she has been running low grade fever off and on - it's staying in the 99.8/99.9 range though....not enough to panic over.
The docs decided to hold her IV methotrexate this past week due to the infections. She did get solumedrol since it had been a month since her last dose. That is probably contributing her to nasty mood swings.
We are still hopeful that her port can be saved - keep those fingers crossed!

Since she started the IV antibiotics last Thursday she has spent most of her time in bed...my bed. At night you are in danger of rolling over on stuffed poodles, multiple purses of stuff, or babies. When you add in a live poodle and a few cats things are darn crowded.
"I can't let them all sleep alone!!" I sure could! It's not worth it to argue with her right now though. I hate to get her in an uproar; when she starts crying it takes her awhile to work though it. She is very tired of being on so much medication and just wants to be free to play.
I want my bed back and her free from infection.

I am getting weary of the way Nickelodeon repeats the same shows all day long. It doesn't seem to faze her - I point out how we just saw that episode a couple of hours ago and she says "so". Her new addiction is the Gem Shopping Network and her favorite on there is Gemstones with Marvin. For some reason she gets into Marvin's excitement over his wares.
"LOOK!! Will you look at that?? Mom, it's WORLD CLASS! Can you believe that deal?? Get on the phone and order NOW!" "It's world class!!"
She is at the point where she knows about the person that cuts the stones there - "oh! That one was cut by Sean!!" Imagine her saying that in a stage whisper - it's too funny!
"Ooooh!! It's beaut!!"
So far she has not seen anything on there that she did not think was "beaut".

Her other obsession is Food Network. That is probably better for her to be watching than Gem Shopping but it comes with it's own set of risks. For instance on one of yesterday's episodes of Unwrapped, the show was about everything hot and spicy. One of the things they featured was a guy in Austin that teaches fire eating. Oh yeah, that got her attention...
Did I mention that Food Network repeats their shows throughout the day? ugh.
Twice we had to watch the fire eating piece because she is convinced that she has to do this. "Oh, man do I want to eat fire." was her comment as she stared at the TV with a glazed over look. I made sure the Aim & Flames are all secure and in new locations so she will not be able to get to them.

See how all this sitting around the house is hazardous?! I hope that we are able to get these pack of infections eliminated so that I can pry her from the TV (and my computer) soon.
The doc said something about a "good 14 days of IV antibiotics.." but I sort of pretended that I did not hear that part today.
Today she did take a break from TV to finish up the last of her school work. We just need to record her last reading lesson and then it can all go in the mail. That will complete her last grading period of kindergarten and we are on to 1st grade. Woo hoo! I am so pleased that I survived one year of home schooling....me not her. A while back if you had told me I would be home schooling I would have asked what you were smoking. Now I think that she and I are both proud of doing it and we are actually looking forward to taking on 1st grade.

It's about time to get meds ready again. We have to stop her TPN and run the vancomycin soon but it has to get to room temperature first. Hopefully she will be sound asleep by the time it's done and I hook her TPN back up...until the next dose of something. We have to set the alarm to be sure we get up and take the drug we need out of the refrigerator. Then set it again for the time to get it set up and started. Everything starts to revolve around the next dose of medication and then it all startsrunningtogether.

Gotta get to work!
All our love,
Connie and Madeleine

Tuesday, June 20, 2006 11:58 PM CDT

Thursday, June 15, 2006 11:06 PM CDT

Hoo boy, was I lulled into a big ol' false sense of security or what?!

Today has not been a very good day...not at ALL. I have overused every cliche in the book.
WHAT ELSE??
OK - enough, I am done!
Stick a fork in me!!
I cannot take another thing!
I am so out of here!
Just freaking shoot me!
WHAT ELSE?
Put me out of my misery!
I know, things could be worse.

Well, enough being selfish; I am still here and I am dealing with it as usual. It just felt good to go around being crabby for a little while.

The plan for today was so nice. Madeleine's first dance class for the summer session was today and she was very excited about that. Our nurse had planned to do her solumedrol, procrit and methotrexate at 6pm so that Madeleine would be able to go and have fun first. She is always so miserable and feels awful after all those drugs so she was being a total angel to work late and do it. We had it all planned and it just did not pan out.

We woke up to the power being out. Since yesterday we had our weekly delivery of IV meds, TPN and hydration bags, our refrigerator in the garage was full. When it became clear that the power was not coming on anytime soon I called our pharmacist to see how long before I needed to (panic) pack it all up and take it to mom's house. Terry had been talking to the power company and they kept giving him vague answers like "oh, hopefully by midnight".
I hauled the boxes of IV bags to mom's and got ready to settle in there.
I got the kids fed some lunch and enjoyed the a/c - did I mention it was HOT?!
We had removed the needle from Madeleine's port this morning and she was going to be "free" all afternoon until we went for medicine...after dance.
Then Dr. An called and told me her cultures were positive. UGH!!
She had cultures drawn on Monday - these were the first ones since she completed her IV antibiotics last week. This morning it was positive and he said to take her over to start IV antibiotics. How about dance this afternoon? No, sorry. What about going to Terry's grandmother's funeral this next week in Detroit?? No, she cannot travel right now.
I knew he would say that but it was worth asking, right?
I just wanted someone to pinch me so I could wake up and the power would be on and Mad's cultures would be negative and everything would be OK.
The doctor talked about admitting her today to start the meds but he called our nursing agency and worked out for us to do it from home for now. If all goes well we can avoid her being admitted - keep your fingers crossed!

We did manage to fit her in a nice long shower before leaving for Y Medical. She loves just being able to get wet all over. I let her play in mom's shower until it was time to head out.
During all this the power was still not on...they did not get it back on until a couple of hours ago. I was so mad over all that I still cannot see straight.

She got started on vancomycin and rocephin this afternoon. Dr. An had them draw cultures again today and we have to be back over there in the morning early for the peak and trough draws for the vancomycin. By the time we do all that it will be time to run over to Medical City for her Dr appts.

I was so sure that we had licked the infection and her port was saved.
Darn it!! I guess I will know more after her appointment tomorrow.

Madeleine has felt crummy today and she was running a low grade fever when we got to Y Medical. I hope and pray that her fever does not go up - that will land her in a room at Medical City. She fell asleep during the vancomycin infusion and slept most of the afternoon. The girls at the office were commenting on how they have never seen her sleep like that for so long.

Please send some warm thoughts to Mad's best friend Bri. Now she needs a transfusion - that is so strange because it's usually Bri first then Madeleine. These two have too many of the same issues!

OK - I am going to get off here and enjoy just sitting here with the a/c blowing on me.
I think I have to play Spinning Wishes unless she hijacks Terry first.

All our love,
Connie and Madeleine

Wednesday, June 14, 2006 12:13 AM CDT

The summer season is in full swing here at Camp Chaos!
I have not been able to get to the computer much lately since Madeleine has commandeered it for her "business". She has had trouble getting to sleep so that means when I finally get her OFF the computer and then in bed it is after midnight. That is wayyy past my bedtime!

She is doing OK. We have had a couple of rough nights lately. Night before last she was up for a couple of hours screaming in hysterics and we could not even get close to her. She finally cried herself to sleep and then the next day claimed that she did not remember it.
I think she maybe did not want to remember it!

Her dance recital was amazing. I have some photos that I will get uploaded soon. Her class did a fabulous job dancing to the Wee Waltz of the Flowers. Mr. Richard and the wonderful folks at Fielder Rd Baptist Church made it possible for her to use their special Green Room to dress in and watch the show from. She would not have been able to stay and watch - that made her so happy! It kept her out of the crowds of kids and she had the best seat in the house to watch all the dances. I had fun watching her sing along and try out a new step from time to time. She cheered and laughed while watching all her dear friends dance and get their awards. We are so blessed to have Ms. Jane & Mr. Richard & Mrs. Martin along with all the A Step In Time gang as part of our family. I wish they had been in the room with us when she looked over at me and squealed "I've got dance fever!!".

After recital she had several days to rest and hang around the house in her pajamas. I have been concerned about her crabby mood but she is due for solumedrol this week. It seems like when it's close to time for that she starts getting moody - so maybe it's a steroid thing?

Last week our local Make A Wish office called and asked if she wanted to come to the Ft. Worth Cats baseball game. They are a local minor league team that play in a fabulous park near downtown Ft. Worth. It was Make A Wish night and they were giving part of the price of each ticket to Make A Wish and Wish children were going to walk the players out on the field. Mad looked so cute working her way across the field with the players. They looked so big walking next to the tiny girl! She was smiling and singing along with the National Anthem.
We did not stay for the game since it was getting late and she was very tired after all that excitement. It was loads of fun and we met another Wish child that got a great-grandchild of one of the original Lassie dogs for her wish! How cool is that?

Tomorrow she is getting her infusion of solumedrol, procrit, and methotrexate. Last week she was throwing up the minute we made it home - I hope this week is better!

She is still on TPN and holding steady at 40 lbs!! Woo hooo!!
We are waiting on labs to come back to see if we have to see if Dr. Goldman wants her to have venofer this week. Since we see Dr. An on Friday maybe all that will fall into place.

Terry's grandmother passed away peacefully yesterday morning. She was 92 and had been diagnosed with AML a month ago. We are so thankful that she did not suffer and had very supportive hospice professionals caring for her. Terry's Mom had already told her that she needed to get a meeting with the "person at the top" and discuss Madeleine. That is certainly something we can all see in our minds. She was the kind of lady that was always in control and I cannot imagine that changing now. :)

I know I am forgetting loads of stuff I wanted to tell you but I am being rushed. There is probably some very important game she is missing out on!

We will get those photos up when I am able to drag a certain girl off the computer!

All our love,
Connie and Madeleine

Thursday, June 1, 2006 11:19 AM CDT

We are home!!

They let her go on Tuesday and we stopped in at Y Medical for IVIG before we came home.
That meant we arrived home pretty late on Tuesday - but that was OK with us! Little Willie was so happy to see his little mommy back home. She spoke so sweet and soft to him while trying to hang on to his wiggly little body.

The infectious disease Dr said that he is "cautiously optimistic" that we have saved her port.
They will not know if the staph is clear until she is done with the IV antibiotics and has repeat cultures. There is still around 10 days to go on the antibiotics every 8 hours.

The whole ordeal has set back her eating again. She is eating less and is still dependant on TPN. While she was in the hospital Dr. Goldman gave her more medication to help her RBC and then decided to go ahead with putting her on procrit. She is going to get it by IV and her next dose is due tomorrow.

Enough of the medical stuff for now! The big news (in Madeleine's opinion) is that dress rehearsal is tonight for her recital. I cannot wait to see her do this big girl ballet dance with her class. They are going to be beautiful in their costumes!
Anyone that will be in the Arlington area - it's at The Metro Center at Fielder Rd Baptist Church. I would be there by 5:45 because they are going to start right at 6. Dress rehersal is a big deal since you can take photos and video during the numbers. On Saturday you are not able to do all that.

I plan on getting her in the door quickly and out of any crowds. Then she will be right off stage and back in the car if I am able to drag her out. She has already been telling me she is going to watch - that is not happening if I can help it. I will have to be the bad guy I guess but she needs to get back home and rest.
She will be able to watch the whole show when the DVD is in. We have to keep her from catching anything so her treatments can stay on schedule and get her closer to being able to be normal...well, OK so normal is a stretch but you know what I mean!!

More soon when I am able to get her off the computer so I can use it!

A quickie MMQ from our week as inmates:
She was laying in her bed coloring and I was laying in mine reading.

"Mom?"
Yes, Madeleine
"This place is so boring. I wish they would call a CODE or something to liven things up."
.........You WHAT?
"Yeah, a code! I wish they would call a code so we could have some excitement. Not a code blue though. I think that is a really bad one so any other color would be ok."
..........
"Oh come on MOM! We need some excitement around here."

All our love,
Connie and Madeleine

Thursday, May 25, 2006 11:54 AM CDT

Well, I posted Tuesday night about how things were pretty much the same....spoke too soon I guess.

She was admitted during the nightTues /early hours of Wed
back here at Medical City with a high fever. They drew cultures and started IV antibiotics right away.

The fever has continued to return between the doses of tylenol and naproxen. She is not a happy camper and just looks miserable at times. Yesterday her cultures started growing and are postive so they added in vancomycin to the rochepin (sp?).

Please send her as many healing thoughts as you have available. We really hope to save her port!! The biggest concern Madeleine has at the moment is that dance recital is next week. She is already a complete wreck because she is missing her class today - we you cannot imagine the tears that have fallen over her realizing that she might not be out of the hospital.
If we can get a clean 24 hour culture she can go home early next week still on the IV antibiotics. You can bet that if she is out of this hospital she will be at recital. I hope that anyone that lives in our area will please come see her. You cannot imagine how important this is to her - she has been looking forward to it for a year. I won't even entertain the idea that she won't be there yet....
Let's just see what happens - it's still just Thursday, right?

Light those candles - anything it takes. We need this infection out and her well!

Keep in mind that she has already been showing subtle signs of a flare up of disease. Going though something like this just makes that worse. Her aldolase and CPK (muscle enzymes) are both high - another sign of disease activity.

She does not need this but she is one strong little chickie.

Thank you for checking in - when I can get to a computer I will update. Please leave her some messages I can read to her.

All our love,
Connie and Madeleine

Tuesday, May 23, 2006 10:59 PM CDT

Things have been busy as ever here at Camp Chaos. I was completely shocked when our nurses reminded me that this was IVIG week - already?? Where did the past month go?

Madeleine has had two appointments with Dr. Goldman and Dr. Weinthal over at Medical City. They are just amazing and seem to know exactly what to do. While at their office she received an infusion of a new drug to help rebuild her iron stores. This is to help boost her red blood cell production. They are also working on how often she needs her neupogen injections. If we hold them her WBC falls out of normal range again - it's crazy!

I am taking her tomorrow back to Dr. Goldman for another infusion. They really seem to be timing things well because her RBC yesterday was low again. It's a downer to see all those L's down her lab reports. The drug he gives her looks like motor oil in the IV bag. Madeleine decided that it looks more like Diet Dr. Pepper to her...without the carbonation, of course.

She has appointments for IVIG then on Thursday and Friday. Time sure does seem to fly and it's not always because we are having fun!

Our girl is really about the same. I took her in to our pediatrician because her rash is really red on her forehead. He was concerned and called Dr. Warren in Houston. They decided to just watch her labs and keep up the steroid ointment. It's not making a bit of difference but I am still putting it on her.

This child used to go to bed every night before 8 pm and life was good. The last few weeks she has turned into a night owl and it's wearing me out. Last night Terry and I were begging for mercy when she was still up at 1 am. We fell asleep while she played GameBoy - ugh!
It always makes me sleepy, I wish it would do that to her!!

In eating news, she ate three servings of mashed potatoes on Sunday. We were quietly celebrating behind her back! Since then she has had very little interest in eating. She insists on something, we get it and then she takes maybe one bite.
Tonight she wanted chicken and dumplings - wow! She has not asked me for that in ages!
I made it and put a small bowl in front of her. Two spoonfuls later she was stuffed.

I know this is short but my little night owl is still up and I am going to play opossum and see if she will go to sleep soon!

All our love,
Connie and Madeleine

Monday, May 8, 2006 9:40 PM CDT

So much to tell - so grab food and a drink...or two.

We made our trip to Houston last week and saw Dr. Warren on 5/01. He has some concerns but felt like we needed to keep moving forward with the treatment plan we have been on for now. I asked him loads of questions and we went over the issues I have been stressing over.
He is trying to get to the bottom of why Madeleine cannot keep her counts up.
She had her IVIG the Wed. and Thurs. before we went to Houston and when they checked labs then her RBC was getting critically low. That Friday the nurse called from Houston and said to stop the neupogen injections since her WBC was elevated. They were hoping that she would be able to maintain a decent WBC on her own without the medication.
Dr. W discussed it all with us and he had more labs drawn to look into her RBC issues. He had them draw cultures from her port along with some labs we don't usually check.
He said that most likely these counts would correct themselves and everything was ok.
But he still wanted to see more tests - just to be sure. He also mentioned that we may have to add in another day of solumedrol infusions - but not for sure yet.

We stopped in The Woodlands and had a late lunch with our dear friends Tonya and Nikki. It was great to see them both! Nikki has the same disease and is doing fabulously! Seeing her always give me encouragement and loads of hope.
After lunch it was back on the road to home.

I think we started getting lab reports back almost every day from Wednesday on. Her cultures were negative - so that was great news. The not so great news is that her WBC and RBC went even lower. By Friday her hemoglobin came back critically low. Dr. An called and told me we needed to get her a transfusion. I think I was on the phone almost all day working out details and getting instructions on what we needed to do. During all this Dr. W's nurse called me and said that we had to start the neupogen injections back up immediately. We were at Carter Blood Center when they called to tell me that - Madeleine laid her head down and had big tears in her eyes. Crud.

Oh, we were at Carter because they decided to get the red cells she needs from me. She is so pale and tired. We will play with her and she will use every ounce of energy she has and then be exhausted. Dr. An said to keep her home and have a quiet weekend resting and that we would get the blood ready to give her today (Monday).
OK - so when finally I got to Carter it was after 3:00. They have a beautiful new place here in Mansfield and I was the only donor in there! Come on people - get in there!
The girls were awesome and when they went to check my iron I commented on how the day had slipped by and I had not eaten. WHAT? The lady was not too thrilled with that...I did pass the iron part of the test and she forced me to eat a small pack of cookies. Great, get me jacked up on sugar when what I needed was FOOD. I crammed the cookies in while they got everything ready. Since they were going to do it on the machine they decided that I could give platelets to help someone else. Fine with me...whatever - just DO IT. I was on my sugar high then - whatever they wanted to do was good by me. Seriously, it really was fine because the bonus was they waived the fee for HLA typing since I was donating platelets. That means I get the honor of being in the bone marrow donor registry.
The ladies made me comfy and I was able to watch something besides Nickelodeon for an hour - how much better does that get? We were on the home stretch and they told me we were less than 5 minutes from being done. I told them that was good because everything was feeling numb....I was told "No, it's not!" and they lowered my head and packed me on ice packs. If we had not been at the mercy of time I would have eaten and gone back. How could I have known when I got up Friday morning how the day was going to end up??
The ice helped and the juice they made me drink really did the trick. My blood was then shipped to Dallas to be made ready for the girl to get tomorrow morning....yeah, things did not work out for today. UGH!
She is so pale!

Her JDM rash is back on her forehead and along her eyebrows. It looks even redder as she gets more pale. Since she is getting the transfusion tomorrow we are not drawing labs today. We switched back to giving her TPN overnight this past week. They have changed her recipe and the lipids are in a separate bag - so, she has two bags with two pumps.
She has been so tired that she really did not care one way or the other. I have been watching her temp and she has been running low grade fevers for days. It starts every afternoon and runs around 99.9 and 100.1.

When I was talking to Dr. An this morning he said that he wants me to take Madeleine to see a hematologist and gave me the information on who he thought we should see. I jumped on that and she will be seeing Dr. Goldman on Wednesday - he is a pedi hematologist/oncologist there at Medical City. It was good to know that we could get in so quickly and I have heard only good things about the Drs in that practice.
I am getting all her records ready so that I will have anything he might need with us. We need to see what is causing her blood counts to get so low and not recover.

She is due for solumedrol this week but I am not sure if that will happen or not. They held her methotrexate IV last week since her counts were so bad. It's scary that we are having to hold her meds with all the signs of disease activity she has cropping up.
Her throat has been burning again and Dr An and I discussed how this is probably vasculitis which is a complication of her JDM. It certainly cannot be stomach acid at this point.

Tomorrow we are going to Medical City for her to get the transfusion and then we will be back over there on Wed. to see Dr. Goldman.

Thank you to everyone for all the thoughts and prayers. The messages me so much to us and we appreciate all of you. Hopefully we can get to the bottom of the problem and get on with things so Mad can feel better and continue to kick some JDM booty.

Would you believe that this is the short version?

Thanks for checking in on our girl.
All our love,
Connie and Madeleine

Wednesday, April 26, 2006 10:00 PM CDT

No news is good news I guess...
There are no changes here in Camp Chaos. Madeleine is still getting all the same meds along with TPN. She loathes getting the neupogen injections! I get the same argument every day now - "..are you going to give me that shot now.." "...I know you are going to give me that shot soon..." I try and get her to not stress over it but she says that it is very painful. From what I understand the medication going in burns pretty bad. The last few days she tells me "You do realize that I am going to fight you?" This is usually when I am dragging her out from under a table or chair.

Her Monday labs came back a bit out of whack so Dr. An redid her TPN recipe. We were just about to switch to once a week labs but I think he will stay with twice a week a few more times.

Thursday and Friday she gets IVIG - already! Can you believe that it was 2 months ago when she got really sick and ended up on TPN. The nausea still hits her and we manage it with medication. I would love to have the old Madeleine back, eating a little of everything in sight!
Now she wants food and then just tastes it.

This weekend we will head to Houston to see Dr. Warren on Monday. It will be interesting to see if Madeleine has any thoughts for him. He is the one that put her on the neupogen injections and I can imagine her giving him an earful!

The girl is still working her way though her "fan mail". The awesome folks from Make A Child Smile have been wonderful to her! You guys would not believe the places she has received notes from! Some of the handmade cards are gorgeous - very creative! Anything with a poodle really gets a squeal.

I am off to try and talk Mad into bed at a decent time. She has not felt well and the pain in her legs gets worse at night.

Tonight is game 3 Stars vs Avs and we need a win in a big way. GO STARS!!

All our love,
Connie and Madeleine

Wednesday, April 19, 2006 9:09 PM CDT

Good evening folks! Here is the latest news from Camp Chaos -

Last time I posted we were waiting on Neupogen to arrive for Madeleine. Well, on Friday when it did not show up by noon, I phoned Pharmacare. I told them I was calling to see why the package had not arrived...well, it had not arrived because they never shipped it. WHAT?
The girl went on to say that it was not sent because Cigna denied it and wanted to talk to the doctor. You would think they would have called to tell someone that!! It's not like we could read their minds! This was Friday and they got the order on Wednesday. It's stuff like this that wears me out!
Our rheumatology clinic in Houston was closed on Friday so I had to get the on call doctor. He was just thrilled, not. It took him most of the afternoon phoning back and forth to sort it out and then finally it all came together. It was 4:00 when Pharmacare called me to say they had the order and could get it shipping for Saturday delivery...if I could just give them a credit card to cover the co-pay. OK - since on Wednesday they wanted 7000.00 for the drug I was going to sit down for this part. This time it was only (LOL - only!) 501.00. I said well, let me call you right back as soon as I figure that one out. Then the girl says it's 5 there and they are getting ready to leave - YIKES! I worked it out and got it all taken care of.

Also on Friday afternoon Terry had phoned someone at his company's home office that sorts out probems like we had with this. Terry told him to talk to me to get all the details so he calls and I gave it to him. By the time I finished explaining the ordeal our insurance put us though he was speechless. See, we have one carrier for health ins. and another for prescriptions and they want to just shove this back and forth because they did not want to deal with it. Meanwhile, I have child that needs the medication and is at serious risk of infection. I told this guy that we could have had the medication on Wednesday when the doctor called it in to our home health agency - instead they put my child at risk by jacking us around! I wonder if they would have rather paid the hospital bills for her and for me when I have a stroke from dealing with them.

Saturday at just before noon the medicine arrived and she got her first injection. She is just thrilled to be getting these daily. Mom said they are painful to get and that is what Madeleine has said too.

After all that was settled we gave Little Willie his Springtime haircut. His fur was so long and curly that it made him look plump. Since he does not like it I had Terry hold him while I trimmed. He looks so cute with his new 'do!

Madeleine felt pretty bad most of the weekend. We went over to my mom's on Easter and she hunted eggs in the house since it was too sunny and warm outside. She was really not up to much but loves Easter and playing in piles of plastic eggs. We had a great dinner and just relaxed all day. It seems so strange not to go take food to my grandmother at the nursing home. I miss that so much with each holiday.
Willie had a good time playing ball and running around.

Monday we caught up on some school work. Madeleine is doing great on that - her cursive is so pretty and she works really hard on it. She surprises herself with reading and it's cute to see how excited she is when she works through harder words on her own.

Tuesday we went to see Dr. An. I decided not to give her IV hydration until after we saw him.
She has been looking dehydrated every morning and I wanted him to see what she looks like. When he came in and started looking at her he said "She looks dehydrated!". Yeah, I know. Her pulse has been elevated and she actually looks dehydrated - she can drink quite a bit of water but it's not enough. He had given the order for the IV hydration as needed and she has been needing it everyday. Well, he decided to add it in with her TPN and he reworked her prescription. He said that hopefully it will help her to "hang on" to more of the fluids
Then he said to bring her back in a month - but to phone if anything changes or with concerns. Yikes, another month of IV nutrition.

OK - so here is what she is getting daily now:
neupogen infection
TPN (IV nutrition) 1490ml over 14 hours
IV Nexium
IV phenergan as needed
IV zofran as needed
IV benadryl as needed

Plus Dr. An wrote an order for her to have extra IV hydration on hand so that I can give it if I see she is getting dehydrated.

That's just the IV meds for now. She is still getting her regular stuff:
IV solumedrol once a month, IVIG once a month and IV methotrexate weekly.

Our doc had us hold her methotrexate last week since her WBC was so low. Hopefully the neupogen is going to work well on that.

Also on Tuesday the doctor in Houston had his nurse call and there is some concern about her CPK/CK and her aldolase going up. He is having all those repeated along with some additional labs when they draw tomorrow.
Because of the neupogen injections and the TPN we are still getting labs done twice a week.
Let's hope this is not a new flare up in disease activity.

Oral meds are still a little dicey. She gets so nauseated by swallowing that much at once it is still a challenge.

I was on the phone with our wonderful home health agency, Y Medical, Tuesday afternoon.
We were going over the new orders from Dr. An and they were filling me in on when they were bringing the new TPN. I went out to the garage to check how much we had of her other meds when I noticed water on the floor. Just what we wanted...it was coming from the water heater. After I got off the phone I followed the stream and it was coming from one of the hoses. I was about to call Terry when the garage door started going up - perfect timing! He was home for a late lunch. He turned off the water to the heater and said that he would get a new hose and replace it when he got off that night. Wait! That is not until 10 pm - no hot water for the rest of the day? Nope.
Later that night Madeleine's port was not very easy to flush and it is about time to take the needle out and re-access it anyway. This morning I called our nurse and told her so we agreed that I would take the needle out and let Madeleine enjoy a nice long shower before we re-accessed. She was so excited about getting wet "all over" and I went in and turned the shower on and waited. We waited, and waited...no hot water.
I called Terry at work and told him that it was not working. He says "Well, I had a hot shower early this morning." It's not hot now!! The whole thing must have shorted out when the water was not filling up the tank...instead it was filling up the floor of the garage.
We had to forget about the nice relaxing shower. There is nothing relaxing about a quickie rinse in cool water!
I am so glad Terry got off at a decent time so he could get a new one and install it real fast. In fact he just finished up! yay!

Tonight the girl is snuggled in my bed watching Seven Brides for Seven Brothers. She keeps singing along with it - crazy kid!

I just have a few of MMQ's before we say good night -

"You are getting older now so your mind is going"
..wait a minute!

"Call that doctor up and tell him I want the IV form of neupogen!!"

"I want to give you a visual example of what I am saying..."
Oh boy..am I in for it or what?

Goodnight!
All our love,
Connie and Madeleine

Wednesday, April 12, 2006 8:50 PM CDT

I cannot believe it's already Wednesday again. The last week has been mostly a blur - again!

We went to Dr. Trone last Wednesday. He is a ENT specialist and after a quick look and discussion about symptoms he thought he knew what was wrong. Then he said to confirm it he would have to schedule to do the procedure in the OR to go in with a scope. He went on to say that if she was younger or older they could have done it then in the office.
I told him she is mature beyond her years and has been though plenty of nasty procedures. She was sitting there crying but told him to "..bring it on.."
I had her IV phenergan with us so I gave her that to make her woozy. Then it was over in a flash. He went up her nose and down her throat with his scope and took video of a very swollen larynx. After he pulled back out and we tended to a minor nose bleed, he showed me the video that confirmed the trouble. He said that her larynx looks "burned". It is red, swollen and angry looking. Great - now what??
He says it is from stomach acid...Dr. An cannot figure out how she can have stomach acid with all the meds he had her on.
So, Dr. An switched what he could of her medication to IV then added Nexium by IV.
Since then the burning has continued and it is no better. Sometimes she will wake crying in the night with her throat "on fire". She is still eating very little and it is a battle to get tylenol in her. Dr. Warren gave her a break from swallowing pills because it is so painful to get them down.

We took it easy over the weekend and let her rest as much as she wanted. As much as she wants to be up and running around she has so little energy. If she feels like playing, we play as much as we can. I have even let her pile into the bed and paint on a big tray. Ewww! What a mess...

Monday morning Dr. Warren's nurse called and said he was concerned about her white blood count. It has been low for weeks but is not dipping lower. We do labs on Mondays and Thursday so Dr. An can check them for her TPN. They do a CBC with diff and platelets, and a complete metabolic panel for him. Dr. Warren wanted a copy sent to him after Monday's reports came back in, especially her ANC.
This morning the nurse from Houston called again to tell me that Madeleine's white count is too low and they are concerned about her. He wrote orders for neupogen injections daily and labs every 3 days. The nurse and spent most of the day arranging to get the medication.
At one point a local pharmacy wanted something like $7000.00 from me (HAHAHAHAHA!!!)
to get it and then I could work it out with our insurance. As my daughter would say "Uhh...
......no."

By late this afternoon it all fell into place and we should have the medication Friday morning.
We wanted it immediately but that is how it worked out. I gave these injections to my mom when she was getting chemo so we are familiar with the side effects. They gave mom quite a bit of bone pain.
Maybe her being neutropenic is part of the reason she has no energy and feels awful. I am not sure if that is contributing to the nausea and headaches though.
I am pretty sure I did not ask "What next??" this time!

Dr. An has been on vacation and will be back in on Monday - we see him that afternoon. I plan on having a load of questions for him. Dr. Warren's nurse claims he does not think that the problems with Mad's throat is from any of her medications. I still wonder if it's not the big ol' IV dose of methotrexate she gets each week.

Tomorrow she is due for solumedrol again already. I am going to get up really early and get her started on her IV hydration. It runs for 3 hours, then we can take the needle out of her port and she can stand in the shower and relax some. Then we will go to Y Medical to get her solumedrol and methotrexate (YUCK!).

It is a balancing act to manage all the medications. She gets 3 hours of IV hydration, 14 hours of TPN, IV phenergan every 6 hours, IV zofran as needed, IV benadryl as needed,
and IV Nexium once a day. Well, it does not look like much typed out but changing all that out making sure of all the times - and that is just her IV meds. We are still doing a few oral meds and I am working those out with Dr. Warren's nurse. She is on Omnicef and hates it.
Everyday she demands they find a way to give it IV because it burns so much to swallow it.

This afternoon she asked me if it was OK to just cry. Then she went over to the sink and watched herself cry in the mirror. She is so tired of feeling awful. Then she curled up in my bed and went to sleep. I think she felt better after resting and is now needing me.
She needs poodles cut out of white and black foamy stuff.

You guys would be amazed at all the poodle photos and artwork people have sent. She loves reading what she calls her "fan mail" and squeals over each and every one.

I guess I better go and get to cutting out these poodles. If I am not careful she will be trimming Willie's fur and gluing it on her cut out poodles!!

We will try and update sooner -
all our love,
Connie and Madeleine

Monday, April 3, 2006 10:19 PM CDT

Our weekend was more of the same...
Helping our girl manage awful nausea and she screams over the "fire" in her throat.
When the burning sensation is not in her throat, it's in her stomach.
On Friday we saw Dr. An and he is leaning more towards this being disease related.
ugh!
He ordered reglan by IV 3 times a day and said to continue with the IV zofran every 6 hours.
Madeleine told him that she wanted to get her TPN in the daytime - yea! Getting up so many times at night to run to the potty was getting so hard for her. The additional fluids seem to go straight through her and she cannot just walk to the potty - when you gotta go, you gotta GO!
While we were there on Friday we agreed that Dr An would call Dr. Warren in Houston and see what else we could be doing to get this under control. We left his office and went up to the patient floor to see Brianna. She had been inpatient and had surgery to remove her gallbladder. We were hoping that would solve her nausea issues...no luck though! I hope that they can get to the bottom of what is doing this to both of these girls soon!

We just had a quick visit and made our way back home. Madeleine had received her IVIG Thursday and Friday so she was feeling yucky already. By Friday afternoon she was complaining of a terrible headache and was having us rub calming lotion on her neck. She has cried off and on all weekend over the headache....did I mention yet how I hate this??

Since she is still eating very little, Dr An kept her on TPN. We will be continuing until at least 4/18 until we see him again. On Sunday she woke up wanting to go to Cracker Barrel. I have no idea where that came from but if she was going to eat then we were THERE!
Granny went along and we picked up William and went to lunch at Cracker Barrel. She ordered her food and managed to eat one french fry. At least she is trying I guess...

Please be sitting down for the next part of our boring story...
Camp Chaos was certainly interesting today. We have not had a very good day. Madeleine has cried over her head and throat almost all day. I finally had to corner her and force some naproxen in her to work on the pain. She does not want to swallow anything - food or medicine. We stopped at Target because she told me that we had to get a hula hoop.
OK - I can handle that. Then we were off to PT where she worked on being able to hula hoop and did it beautifully even with her IV getting tangled in everything. You should have seen her in the swing they have in the clinic gym. My head was hurting watching her!

She screamed almost all the way home and we ran in and had another struggle getting tylenol in her mouth. Next time the cats need medicine I will be a pro at this! I had sat down to answer some messages and shouting from downstairs starts.....
I will not give out the name of this individual to protect his identity. He is a bit sensitive about this so I will just call him Child A.
Child A was yelling for me. These days unless there is blood I just don't have the energy to run so I made my way to the stairway as he was getting louder. This just did not sound good to me...maybe there could be blood? Oh no, I ran into the hallway and SPLASH! I stepped in water as I am being told that the house was flooding. The toilet in the kids bathroom was backed up and water (why is it never clean water?!?) was gushing out everywhere. I made an attempt to turn off the water and told Child A to get a mop! He could not locate the mop because it was hanging in the laundry room and I don't think he has ever paid attention to that I guess. Anything! Get anything to get the water! Wait...no, just get the phone!!
CALL DAD!!
Yes, I was about to cry. This was all too darn much and I just could not face this alone.
Child A dialed the phone and asked for him....they told him he was at lunch. He hangs up as I was shouting he was not at lunch. Dial it again! I opened Madeleine's door because the run off was going that direction - nooooo! I saved Cinderella's castle just in time and threw her rug back. That could have been a major disaster.
During the shouting and chaos, Madeleine was stuck upstairs. Her TPN bag and pump were on the pole and it's too much for her to manage to get to the stairs. I could hear her freaking out so I would toss off my shoes and run up to tell her it was OK and then back down to work on our little problem again. We called Terry again and I just told him to COME HOME NOW!!
Clean water I can handle...this I cannot. I was so glad that Madeleine was not portable because she was working on ways to get downstairs and I would catch her and steer her back.
Terry made record time and took over the clean up as I was noticing that Little Willie was wet. He has been running thru the filthy water - noooooooo!! I could see him jumping into the middle of my bed to love on Madeleine.
I grabbed him up and headed for the other bathroom to give him a good wash...Child A was holding a cat out to show me that he cats walked through it too. All our cats are weird and like to play in water.
Washing Little Willie was a piece of cake - he loves a bath. Washing the cats was a nightmare. They like to play in water like after you turn off the shower...not to be washed in water. I was giving William's cat a good scrub when I notice that Child A is catching all the action with his camcorder. He could not help but he wanted to be sure we remember it all...or he is going to sell the whole ordeal on ebay. Each cat was more difficult to wash and I made it to the 3rd one before I was tagged with claws. Madeleine kept yelling and screaming at the cats not to bite her mommy. Then she would cry about her head. The other child was quietly getting it all on tape. I think he was able to get good footage of the blood running down my arm.
Madeleine got out her phone and called my mom to give her a full update. That was not enough because then she called and told Bri about it.

After all the animals were cleaned up I jumped in the shower. It was time to give Madeleine her next zofran and I did not want to give it to her in my condition.
Terry had a bucket and his disinfectant working at top speed. Everything was back in place and clean around the same time I was.

Do I sound stressed? Today I think I arrived at the summit of Mt. Stress!!
I called my mom and asked her to bring me something to eat...she did. Thanks mom, I appreciate it.

Madeleine is tucked in my bed sleeping peacefully after getting all her medicine. She is exhausted from all the crying.

Dr. An and Dr Warren have me taking her to a ear, nose and throat specialist on Wednesday morning. If he cannot get to the bottom of what is causing the burning sensations and nausea then I am supposed to take her to Houston. Dr. Warren will then see if he can figure this out.

I am off to bed with the girl. Good night!
All our love,
Connie and Madeleine

P.S. Please don't forget to save can tabs for Cure JM!! Also, if you will send me a $10 check made out to Cure JM I will send you a Cure JM dog tag. They are so cool and will slip on a key ring or backpack.

Wednesday, March 29, 2006 9:21 PM CST

I know, I know...you need to update...ok!!

These days I rely on Madeleine to remind me what day of the week it is! She is getting up in the night a few times to potty because of the TPN. Terry and I are like zombies stumbling along with her keeping her from stepping on the filter and managing the pump. Night before last she got up at 3 something and was up the rest of the night and day. I was in a fog! She screamed off and on and was just miserable. We managed with meds the best we could - I don't know how she can stay awake like that!!

You all know that I call our household Camp Chaos for a good reason, right? Last night I was changing out the connector on the end of Madeleine's tubing set to get ready to start her TPN. When I twisted the connector I heard a small crack! Madeleine's eyes got huge and she started to cry. I was hoping that it was on the connector piece and not her end - of course it was on her end! ugh! I turned to reach for the phone and 2 seconds later she gasped and blood was coming out all over the place. It was just a second before I clicked the clamp but she was starting to wig out so I told her "..well, looks like you have great blood return tonight!" Then she was laughing with tears rolling down her cheeks. We de-accessed her after I held it closed and got heparin in. Our awesome nurse met us over in Irving at the office to re-access her port since I did not have all the supplies we needed. All that went smooth and she fell out the minute we put her in the car to head over there...think being up since 3 something that morning helped? She wanted to watch Harry Potter but I don't think she even made it 3 minutes into the movie before she was snoozing! Same story on the way back home - she snuggled right up and slept all the way home. Terry carried her in and I GENTLY connected the TPN and we all tumbled into bed.

This morning she really struggled with nausea off and on, then this afternoon it was awful.
I wish we could get to the bottom of all this! Tomorrow she goes back to Y Medical to get day 1 of IVIG. It has already been a month since she got it last and she has been sick almost the whole time! Please cross your fingers, light candles - whatever! Just be thinking of our girl and that things straighten out. We do NOT want a repeat of the last month!

Enough of the yucky news - how about some fun news? Sunday Madeleine and I tagged along with mom and Andrew to the Stars game. We have not been with them all season and it was so nice to get to go! It was a day game against the Flames and we got there early enough to keep Madeleine out of the crowds on the concourse closer to game time. She had so much fun watching the warm up and seeing our friends there. It is very cold in the area where our seats are this year so she stayed bundled in her blanket in Heather's lap almost the entire game. She loved dancing and singing with the music and cheering when the Stars scored. It was exciting for her to see Mike Modano score a goal, to eat some cotton candy, and just be a kid for a little while. I don't think she was thrilled with me for not letting her roam the concourses during the intermissions like she used to be able to do. I took her out midway through the 3rd period so she wouldn't be in a big crowd getting out of the arena. By then she was so tired that it was ok with her. She kept telling us that it was so much fun - "I forgot how much fun this is!" Before we left she told my mom "Granny, you need to get my seat back because I am coming to ALL the games from now on!!"

Madeleine has a new imaginary pet. It is a little tiny poodle named Pipsqueak. Tuesday morning I was trying to cat nap some since she had been up for so long! I guess I really was sleeping hard because I was dreaming that we bought her another poodle - a tiny teacup girl poodle. She was puffy and looked just like Little Willie did when we first got him. Her name was Pipsqueak and she and Little Willie bonded immediately...well, until I jumped wide awake at the sound of Madeleine's scream. I looked around counting pets quickly - it just felt too darn real! Now she pretends she is playing with Pipsqueak.

On the subject of dreams, I really should not admit to this one but here goes..
Madeleine and I have been playing a new Gameboy DS same called Pokemon Trozei - it's a puzzle type game and you match up the pokemon in rows of 4 to clear the screen and in the end you are trying to get all the pokemon. It's a bit like collapse or tetris. Well, I keep having this dream that I am playing it and instead of pokemon the images are IV bags, big bags of TPN, pills, prescription bottles....UGH!! I go crazy trying to match it all up until I wake in a cold sweat! Video games are too stressful!!
We have also been playing a game called Garden Dreams where you help Granny with her garden. You have to make money and spend it to raise more veggies. Madeleine gets so mad when her plants get eaten by bugs.
That leads up to the first MMQ tonight:

"Oh, NO!! I HAVE WORMS!!"
This was the first day she was playing Garden Dreams. I was not sure what she meant for just a moment.

"That is so last issue..."
All I did was ask her if my hair looked ok...that should teach me to ask her!

I cannot be taught. Was this shirt ok?
"You look weird."

What is wrong with it??
"it's too blue"

What about this one"
"too pink..."
I give up...

"Mom, that is very poor parenting!"
Don't ask.

"This is kind of itchy but I like it. It's so me."
Picking out a nightgown.

The girl is asleep so I am going to run. I might be able to sneak in some Pokemon Trozei and get some rare ones to surprise her with tomorrow. Please be thinking of her tomorrow and Friday - IVIG both days and then Dr. An on Friday.

All our love,
Connie and Madeleine

Thursday, March 16, 2006 9:37 PM CST

Things have been very hectic here at Camp Chaos. We had planned to hang out and just do some fun stuff around town for Spring Break...well, that did not work out.
Last Friday night Madeleine got worse. She went from just nausea and some vomiting to lots of vomiting and diarrhea in the night and early hours of Saturday. Dr. An was out of town and we had to talk to the on call Dr about what to do. I felt like she was dehydrated and so he had us bring her over to Medical City in Dallas. It was close to 5am when we got over there and they determined that she was dehydrated and started IV fluids. After a couple of hours she looked so much better just from the hydration. The Dr admitted her and continued the IV hydration on Saturday and Sunday. Even though she was no longer throwing up she was not staying hydrated on her own. On Monday they started her on TPN (IV nutrition) and lipids since she has not been eating for so long. We are offering her every food she could want and she will not take more than a bite or two. Until they can get her back on track she will get TPN for 20 hours a day. They kept her until late Tuesday afternoon so that they could be sure the compound was good for her before sending us out to get it by home health.

She is managing great with her big backpack that has her IV pump and the bag of TPN. We have been though several pumps since Tuesday already! They don't seem to like us much and go haywire!

Tomorrow we are back to Y Medical for her solumedrol and then over to Medical City to see Dr. An. They are still shaking their heads trying to find out what happened. This has really been crazy with no clear answers. Mad's friend Brianna also became ill not all that long after we were dealing with it. She had all the same symptoms and the only thing they had in common was they both got IVIG infusions the same week. We checked and they were from the same batch but the other people that received it did not get sick - just Mad and Bri.
Brianna ended up in Medical City on Tuesday - they came in as we were leaving and Brianna even got the room we were in! She was discharged tonight to continue on TPN at home.
It would be nice if we could figure out what the heck caused all this.

I feel terrible that Madeleine has to be hooked up to a darn IV 20 hours out of every day right now but she copes so well with it. The bag is so heavy that she either drags it or she "walks" me like a dog as I run behind trying to keep up with her.

Well, that is the short version! I am so tired and it was great to get back home. If you have to be in a hospital then Medical City is the place to be - they have 2 beds in the pedi rooms. One for the child and one for the PARENT! I cannot tell you what a difference that made for me. It was much easier to get up in the night and take care of Mad's needs and then crawl back into my own bed and back to sleep. I know that sounds petty but I was able to sleep when she slept without being folded in half on one of those chair/bed things.

Just one MMQ and a short story because I am getting to bed early.

"This hospital is really cutting into my social life!"
Mad told Cleo this when they came up to visit her in the hospital over the weekend.
Cleo brought princess gowns to play dress up and they paraded over to look in the newborn nursery wearing princess gowns. I took a photo and will upload it when I get a chance.

On Tuesday when it was getting close to time to leave, I ran out to the car to toss our bags in. Madeleine was hooked up and had two big pumps on one IV pole that was a bit of a challenge to maneuver. In the hospital you get lipids separate from the TPN so they run thru separate pumps, both with power cords and what seemed like miles of tubing. While I was out at the car Mad decided she had to go potty. Instead of calling for help she slides out of bed and unplugs both pumps then fixes all the cords and tubing before dragging the whole thing into the bathroom. When I came back into the room she was on her way out of the bathroom! I asked what on earth she was doing!! Just going potty! It was a handful for me to get it all the in bathroom for her over the past few days - how did this little girl manage all that on her own!?! I would like to have seen that! Her nurse was very impressed with her skills.

I know I will remember more after things get back to normal...or normal for us. We have her tucked in bed with her "little sister" (IV backpack). Last night at 3:15 am Terry jumped up and said "it's beeping!!" we ran downstairs to her room and checked it all out. I think that because the bag had slid down flat the pump was having to work harder to get the medicine out - it stopped after we propped it back up. It's hard to get back to sleep after the IV pump scares the heck out of you at 3am! We did not have nurse down the hall to fix things!
I hope tonight we don't get any surprises. See? It's never a dull moment at Camp Chaos.

All our love,
Connie and Madeleine

Friday, March 10, 2006 11:46 PM CST

Before I get on with an update I have to say a big THANK YOU to all the folks from Make A Child Smile. I am overwhelmed with your kindness and generosity. It will be impossible to acknowledge everyone - as much as I would love to! You all deserve a big hug and some wet Little Willie kisses for the things you do. The timing is pretty amazing since she has felt so crummy - she has squealed with delight over your cards and pictures. I hope someone from Daisy Troop 225 in CT reads this because - you guys are incredible! Madeleine was delighted with your box of goodies - it is a little girl's dream! She was very interested in the photo of Zoey! Miss Barbara, does Zoey have a boyfriend? Madeleine has decided that "Zoey is perfect woman for Little Willie!". Hopefully a long distance relationship is ok? :)

I wish I could give each and every person a hug for all the sweet messages and amazing artwork. Your letters are heartwarming and we are enjoying each and every one.

I know you guys have been waiting on an update and I was hoping that if I waited I could give all good news. There is not a lot of good news to report on tonight but our doctor and nurses are working hard to keep her hydrated and get answers.

Madeleine has continued to have terrible nausea. It is to the point where she is not eating anything to speak of. When she does take a small bite of something she gets awful pain and the nausea comes back. She has not thrown up since Wednesday - but all that is going in is water. On Monday the doctor started her on IV zofran every 6 hours and she has been doing well with that. It controls the nausea great...unless she tries to eat. When we tried to taper that back to see what would happen she started getting worse so we are sticking to every 6 hours for now.
We are not having trouble getting her to drink water. She tried gatorade and it made her sick. Dr. An had us bring her in on Thursday and he scoped her belly again and took more biopsies. He also drew a number of labs to see if that can give him a clue as to what is going on with her. We are not sure if it's a medicine reaction or what - all we know is that she has to start eating again! This is my child that LOVES her food.

Dr. An said he should have lab reports on Monday and I am supposed to call first thing to see about getting her on TPN. He is planning to admit her and get it started for a night or two first then she can get it at home until we have her back on track. TPN is IV nutrition and that will give her GI system a break. She has felt so bad that she did not really care that we were going back to scope her stomach. I am worried about her losing weight - it is always a big thing for her to show some growth.

The good news is still good but kind of got pushed to the back burner with all the not so good stuff going on. Dr. Warren was pleased with her when we saw him on March 1st. He took her down to .5 cc of prednisolone - that is like nothing! In 3 weeks he said we can stop the oral steroids all together. For now he left all her IV meds the same and we will talk it all over again on 5/1 when we go back.
This was all before things started going bad on Friday. We are going to hope that this is just a small bump and we can get her right back to her usual self...eating everything in sight!
I would be thrilled to make chicken and dumplings at 3am if she would just eat it!!

We have some MMQ's but I am exhausted and my girl wants me to read to her. Be sending our girl some hungry thoughts!

All our love,
Connie and Madeleine

Wednesday, March 8, 2006 12:08pm

Hey! This is going to be a quickie - sorry! Madeleine had a reaction to the IVIG she got last Thurs. and Friday so we have been in a black hole of nausea, headaches and vomiting. She has felt so miserable and we are ready for it to stop! She is getting IV zofran every 6 hours and it was working great until late yesterday. We tried to cut back and she got sick and we were back to where we started. Now I am waiting to hear back from our nurse and we will be heading over to get IV prevacid or protonix to see if that will help her keep something down. She is so small that the thought of her losing weight worries me. I will update soon with details from our Dr's appt. and let you know how things are going. We are all exhausted and ready for our Madeleine to feel like herself again.

I have to send a shout out to the Make A Child Smile organization - you guys are so amazing! Your timing is great too because with Mad feeling so bad she has been able to lay down with all her cards and letters. The poodle pictures you guys have been sending are so cute! I have plenty to say about all the kindness and well wishes - so more on that soon. Thank you all from the bottom of my heart! We love you!

PS - another child got IVIG from the same batch. She got very sick too...wouldn't you know it was Madeleine's best friend Bri. Please be thinking of her too.
All our love,
Connie and Madeleine

Monday, February 27, 2006 10:19 PM CST
We have been sailing on the mood swing river for the last several days. She reacted differently this time to the pamidronate. Back in October it did not seem to really do much other than make her tired and a little crabby. This time she was a LOT crabby and very nervous...like bouncing off the walls nervous. I am pretty sure I am losing my hearing from all the screaming.

On Thursday after her pamidronate finished she got her IV push of methotrexate - can I get a big ol' UGH!? That just added to her bad mood. We tried to stay close to home so that she could rest and recover from all the drugs.

Friday we celebrated my birthday at my mom's since she was going to be out of town on my birthday. We grilled and had dinner in because that is easier on Madeleine when she is feeling so crummy. It was a very nice dinner and then we had cake -- I have to send a shout out here to my dear friend Kim -- :) Kim!! I had all four corners and I ate two Friday night and then the others for breakfast Sat and Sun mornings! I was thinking of you the whole time - I would have shared if you had been there. ;)

Madeleine had prepared a special dance in honor of my birthday and she performed it. Before she could get started Little Willie kept getting in the way. She demanded that someone get him and hold him - Andrew got up and grabbed him and that sent Madeleine into a screaming hissy fit "NOooo!! Not Andrew!! He will neuter my poodle!! Get him Mommy!!" She was so serious but that was just too darn funny. Andrew is always threatening to take care of that issue since his cats have to endure Little Willie's affection. I laughed until I cried over that and of course, that just made her more angry and I had to hear about how I don't appreciate her etc. Sailing on down the moody river......

When Terry got off work on Sunday we went out for a quick dinner. Madeleine and William were determined that I would get to go out on my birthday. We survived with no outbursts and got home in time to get all the kids off to bed. When William was getting ready for school this morning he was convinced that someone was in the house. He came running up stairs, screaming and waving a bowling pin. I told him to calm down and that we were all in the house along with a whole herd of pets - so YES, it always sounds like someone is in the house!! I begged him to get quiet and to please PLEASE don't wake up Madeleine. He stomps off with his bowling pin and Terry showed him his room was empty and that there were no unexpected guests. While he was talking to William, Madeleine walked into my room without saying a word and she gets into bed beside me. She flipped on a TV show and just sat there looking a bit glazed over. BANG! BANG! BANG! William comes running up the stairs screaming and waving that damn bowling pin again - "someone walked past my room a minute ago! I heard them!!". I pointed over at Madeleine and told him that it was his sister and to put that bowling pin away before someone got hurt.
Just an average morning....

Madeleine and I stopped at Common Threads Quilt shop in Waxahachie before we went to PT. Mad found a few fat quarters to add to her fabric stash - I bribe her with that so I can look around for a few minutes.

Tomorrow we are out the door bright and early to get to Houston. My dad works down there and is retiring so we are going to stop in The Woodlands and go to his party. William, Madeleine and I are going and then we will stay over for Mad's appointment with Dr. Warren on Wednesday. I am hoping like crazy that he will take her off the oral prednisone at this visit.

I need to go pack up and I guess I better make sure that William did not pack his bowling pin!

We'll close with a few MMQ's from the past week:

"When I am older, I am going to kick your butt!"
William was on her nerves and she let him know it.

"LAUGH I SAID!"
Let's just say she has been a bit bossy.

"Mom, you are just not a very good example."
Well, I never!

"That is cat puke. Willie's pukes are more watery."
I will spare you the details.

On that note I will say good night!
We have appointments for IVIG on Thursday and Friday after we get back in from Houston. I will give you the details from the doctor when we get back and I get a minute.

All our love,
Connie and Madeleine

P.S. Please don't forget to save can tabs for Cure JM!

Monday, February 20, 2006 10:52 PM CST

Wow. It amazes me quickly the days are flying by!
We have had a very busy schedule with all the usual appointments. PT and aquatic therapy are twice a week when we can make it and Madeleine loves getting into the warm pool.
She has been getting to dance class as often as we can manage that too.

Dr. An is keeping her on an adult sized dose of Prevacid along with Carafate for her stomach. She continues to have pain and reflux but the medications give her relief. He said that the ulcers should get better as she is tapered off steroids. Keep your fingers crossed!
Until we see Dr. Warren on March 1 we are continuing with one dose of IV solumedrol a month and IVIG over two days, once per month. The fun (not) is the IV methotrexate every week. That is a killer and we can look forward to a couple of days of big meltdowns and mood swings. That drug has always been a challenge for Madeleine, she just does not tolerate it well. I plan on talking to Dr. Warren about it but we may just have to keep working though it since it is helping to get her off the steroids.

Tomorrow through Thursday we are over at Y Medical to get pamidronate. She had it last in Oct and we had to go to Children's for it. It is going to be much better not to have to drive into Dallas and then deal with the parking at Children's. Instead she can run me all over the Irving area fetching food.

Madeleine is really doing pretty good. You can look at her today and see a difference from late last year. I believe cutting back on the large amounts of solumedrol has to be making a big difference. She has been keeping us all very busy working on projects and doing school work. When we are not doing that she wants to play board games or watch Harry Potter movies. She has also been googling poodle puppies for hours on end and oooh's and ah's over every puppy she finds. Unfortunately she has discovered iTunes and tonight found out they have audio books available. UGH! The books are not .99 like the music!! She really learns too much from her older brothers...

One MMQ before bedtime:

"That is just STUPID!"
I had just read her the fortune from her cookie that came with her Chinese takeout.
It was "From now on your kindness will lead you to success." Maybe it was the way I stressed the word KINDNESS a few times?

I have to go tuck the girl back into bed - again!

All our love,
Connie and Madeleine

p.s. We are saving soda can tabs to recycle for research funds - please help us save loads! This is a national project for Cure JM and you can read about research projects at CureJM.com!
E-mail me if you have some we can have for this great cause.

Sunday, February 5, 2006 10:31 PM CST

Our girl is finally tucked in tonight but keeps phoning out asking for one thing or another.
I have to admit phoning is a bit nicer than just screaming for what she wants. She has been back to needing her heatwrap on her legs every night and asking for something for the pain.
ugh...

Last week we made it in to see Dr. Packwood to get her eyes checked. Dr. Warren had a gentle reminder in the last report from our office visit that it was past time for that. We like Dr. Packwood very much and he was Madeleine' eye dr at Scottish Rite so he already knew the girl and her case. It was nice not to spend an hour going over what juvenile dermatomyositis is and what we needed to do. We had been seeing him every 6 months but he told me he would be more comfortable seeing her in 3 months instead. She did not have anything big going on but there was some irritation that he wants to keep a watch on.

Thursday and Friday she received her IVIG and methotrexate at Y Medical. It makes for long days but I would much rather be doing it there than in a hospital! They drew labs on Thursday before starting her infusions.
We are waiting on some of them to come back early this week. The lab we are now using sends out her aldolase to another lab for testing. In the ones we do have back the usual suspects are very low - WBC and RBC. Her LDH is a bit elevated and has been the last several sets of labs drawn. IgA is fairly low and AST (SGOT) is elevated.
I am anxious to see what her aldolase is this time because it has been slowly inching upward. We want her to be able to taper on off steroids with no setbacks. I will let you know when we get that report back in.

On Thursday she was determined to still go to dance class even though she was worn out from the medications. She had told me several times not to forget because she was going!
When we pulled back into the driveway to get her ready for class she told me that she could not do it. The methotrexate really hits her hard and I was not sure if it was that or that she did not want to go with her port accessed. I think it was more that she was feeling yucky because she crawled into my bed and ordered up an early dinner.
Terry manned the stove getting the chicken and dumplings going while I made a run for a new Mexican food restaurant in our area. Madeleine wanted rice, beans and queso. The cheese gives her belly fits but it was not worth a war over it.
When I got back with the food she had already been through a bowl of soup and was ready for the next course. Terry and I joined her and we had a picnic in the middle of our bed. Little Willie tried so hard to get a snack from one of our plates so you could not look away or he would move in fast!

One afternoon we had come home from being out at appointments and Willie was trying to get into Madeleine's purse. He was doing all he could to get his snout into it and when she sat it down on the bed he started digging in. I pulled him out and he made a growling noise and stuck his nose to the bottom of her purse and came out with a chicken nugget. GROSS!
I have no idea how or when it was stashed in there! Madeleine thought it was hysterical and never told me when she put it in her purse! That is totally from my MawMaw - she would stash everything in her purse! You might want it later...

On Saturday she was feeling much better and went to a Tea Party Birthday party for a friend and had such a great time. All the little girls looked precious in fancy dress up clothes pouring tea (pink lemonade) and drinking it with pinkys extended. I took loads of photos so I will get some added in soon.

I will leave you tonight with some notable MMQ's from the week:

"Don't even look at me - I'm just sitting here coloring."
I think that translates into "Don't blame me!"

"Mom, don't you know that it's bad luck to stack your pillows that way??"
duh - I guess no one told me.

"Why on earth do people bring sick kids out to spread colds ALL over?!"
If we are out and about you can bet the coughing, sneezing and snot flying will be next to us. Madeleine just makes a soft growling noise "grrrrrrrrrrrrr" deep in her throat when someone starts coughing next to her. Then she quickly moves! We have really been blessed to avoid catching...well, I am not going to jinx us and will just leave it at that! You can read between the lines!

Two of Madeleine's running crew are in Houston tonight staying with more of our gang. We hope they are having a great time and have very good appointments tomorrow at Texas Children's!
Granny and Aunt Pat are back out on the road working this week too -
everyone drive safe and I am sure Madeleine will be keeping in touch by phone.

All our love,
Connie and Madeleine

Tuesday, January 31, 2006 10:33 PM CST

I know, I know....I am not updating often enough. Some days it is hard to express what goes on in our life here in Camp Chaos. I have heard countless times from dear friends "tapering steroids is WORSE than the full doses" and that is so true. An average day is a rollercoaster of mood swings that wear out a person physically and emotionally. I sit back and wonder, if they make me so darn worn out -- imagine what Madeleine must feel like! She is the one taking the garbage! On Thursday we will take her down to 1cc of prednisolone. Dr. Warren explained that is the amount her body would normally produce on its own - so that is the point that it should stop doing more harm to her body. It has to be done so slowly so that they do not throw her into a full blown flareup.

So, we are spending most days trying to reason, calm feelings, and sort out meltdowns.
It makes me weary but what good will it do to complain about it? I am so happy that we are getting her off the prednisone and we are going to party like crazy when she is off it completely. One baby step at a time...

We did get all the pathology back on her EGD and all the ulcers are a result of the medications....prednisone, solumedrol. I am thrilled with the pedi GI Dr we are using - he is working so hard to make sure Madeleine is comfortable. In fact I had to phone the Dr on call one night because she was in agony with burning in her throat. They were so helpful and then the next morning Dr. An called me and phoned in more medication to the pharmacy. She has 12 daily oral meds at the moment. When she is in a "mood" it can be like getting a pill down a cat!! Anyway, she is getting 2 weeks on antibiotic therapy along with other medications for her GI tract. We go back to see Dr. An soon to get a plan on what we are going to do to help her long term. If anyone in the Dallas area needs a great pedi GI specialist drop me an e-mail - this Dr is at Medical City and he is fabulous.

In other news....Madeleine's aldolase has been creeping upward. Her last 2 sets of labs showed it was over the expected range. Aldolase is an enzyme and seeing an increase could indicate progress of disease. I am not getting too stressed (hahahaha) yet...the doctors are watching it. This could be a result of all the changes in her meds or it could be progression of disease.
It will be interesting to see her next set of labs to see if it continues to increase. She gets labs drawn on Thursday when we go to get IVIG. Some of her other labs are elevated but nothing scary yet. Her enzymes have been on the low end of expected range since just after she started treatment.

If you add all that to the fact that she is so moody and her nailfolds are really red it makes my head hurt. The new team of dr's is on top of things though and I will keep you posted.

Tomorrow is aquatic therapy and eye doctor visits. It's never a dull moment here!

I have been a slacker with getting MMQ's posted - I know!! I will put that on my list too.
Here is a fix:

"You have no business being a mother!"
She tossed this little gem at me earlier today when I told her she was not wearing a sleeveless dress to drama class. Then a few minutes later she flashes me that smile before she bursts into tears because she did not want to hurt me.

"Do you think he could get any stupider?"
She was referring to one of her brothers and I will leave it at that...

"You just chewed my a$$ out for that. Do you think I am stupid enough to do it again?"
Ever have one of those moments when, as a parent, you just don't have an answer for something?

"It's OK because we are both very mature for our age."
She was about to show Brianna her new Trauma Center Gameboy DS game. Before putting it in her Gameboy she finally noticed it is rated T (teen). I caught a lot of heat for letting her have it. William has been reminding me that I still give him business when he wants a T rated game. I think the truth is that he does not have the stomach to drain tumors, cut out cysts and laser off polyps. You should see Mad playing it - she drains, cuts, lasers, sutures, and injects contrast like a PRO!

Hmmm...maybe with her in bed I should try out that game!

Goodnight!
All our love,
Connie and Madeleine

Friday, January 20, 2006 10:53 PM CST

Just a quickie update tonight!

Madeleine's EGD went very well. We left the surgery center with answers! Dr. An found loads of ulcers in the lower areas of Mad's stomach and many more going into the areas below down into her intestines. No wonder she hurts!
He talked to us about how painful one ulcer can be - imagine having them all over her little tummy.
He upped her Prevacid to the max until he has the pathology back early next week. Then we will talk about what we need to do to get her some relief. He said that he took several biopsies in her esophagus, stomach and below. Now that we know why she is hurting, I just want it fixed! I am so happy we have Dr. An working on this - he is awesome.

Today we were at Y Medical getting her solumedrol and methotrexate. I was worried that it might be too much after yesterday's surgical procedure but she did fine. In fact you would not believe how well she did!
For the first time ever Madeleine got her solumedrol in 90 minutes! That was not ever possible because of her blood pressure - not even the first time she was given it! They had to stop it over and over to wait for her b/p to go down. That is why she would have to be hooked up for hours getting it very slowly - not anymore! Our nurses there are so good!

Madeleine did so well on Thursday we stopped at Toys R Us as a reward and she dragged Cinda with her to help her shop. They told us that her balance would be off from the anesthesia - ha ha ha! She was on a mission and nothing was going to hold her back. Since she had been so good for us at the surgery center we treated her to a couple of new Polly sets and she even scored a Littlest Pet Shop toy from Granny.

Everything has been stressful here because on Wednesday morning I found out that someone had stolen my Visa Checkcard number and made a large purchase that maxed out my checking account. After a nervous breakdown and too darn many phone calls, I finally got all the paperwork done with the bank yesterday after Madeleine's surgery. They fixed all the overdraft charges that had been added all over the place and now they are working on getting the charge reversed. The not very nice person that did this made the purchase on the internet so the bank has the name and address the merchandise was shipped to. After they get all that then they can replace the money that was taken from me. It was all such an ordeal and the timing sucked! Nothing like finding out you have been ripped off the day before your child is going in for testing. What is wrong with people? I guess they didn't think the police would be able to just see what the shipping address was?

Thankfully that is getting worked out and I can go back to taking care of my children.
I am going to try and get my hands on mom's memory card this weekend so I can post new photos.

I hope everyone has a wonderful weekend and keep a close eye on your checkcards!!
All our love,
Connie and Madeleine

Sunday, January 15, 2006 10:11 PM CST

I am very sorry for the delay in getting an update written. Some of my best efforts were interrupted by a few games of Skip Bo and loads of cuddling. Other writings are somewhere on my computer when I could not get the website to respond...oh well!
Tonight Madeleine is tucked in and here I am - ready to go!
Well, the truth is that we had to pry her away from the TV because she has been glued to the big dog show that has been on this weekend. When she has not been watching that she is tuned into Food TV. That was something she discovered lately and is now addicted to certain shows on there. I hope one day she starts to love CNN or MSNBC so that I can watch some news...

There is so much to catch you all up on so tonight I am going to just hit the most important goings on.

We had our appointment in Houston with Dr. Warren. He was very pleased with the fact that Madeleine's condition is stable and there is not a sign that her disease is flaring up. He made so many big changes in her medications (and additions to) that it would not have been a surprise if she had gone into a flare up. The Dr said that was very encouraging and that he was comfortable to start lowering her oral steroids. Can I get a YAHOOOO! ?
When he announced that to us, Mom and I just stared at him with our mouths hanging open. We never saw that coming but we were beyond thrilled! Since she did not get any weaker and maintained her strength he said that he wants her off the oral steroids so that the damage to her body will stop. We started tapering and in one month we can lower her dose a little bit more - it's going to be a slow taper but that is OK.
He did leave her IV meds alone. She will get solumedrol and IVIG infusions once per month and her weekly IV methotrexate stays the same. Unless her condition changes we will stay with that plan until the first of March when he will see her again and decide what is next.

Dr. Warren did remind me (again) that he wanted her seen by a pedi gastroenterologist. We went to see Dr. An at Medical City this past week - he is Bri's GI specialist and Kim had told us he is wonderful. As it turns out Madeleine makes his 4th JDM patient - so that made me feel good that he was familiar to kids with this disease. The other odd twist is that all of them are Dr. Warren's patients too! We had a good visit with him and he went through everything thoroughly and told us he needed to do a EGD. That is a esophagogastroduodenoscopy, EGD is easier to pronounce. It is a procedure where they can go in with a endoscope and look at the esophagus, stomach, and upper portion of the duodenum. During the procedure they can do perform treatment and take biopsies if necessary. That is going to be this Thursday at a pediatric surgical center in Plano.
The girl is very nervous about it so we are not talking about it very much. A couple of nights ago she pulled up her pajama top and asked me "Show me where they are going to cut my belly open, Mommy." She was just so darn pathetic that it broke my heart. I told her that they will go in through her mouth and would not be cutting her tummy. With that she gave this huge sign of relief and went back to her playing.
She has had terrible reflux almost everyday now and it seems to be getting worse instead of better. It was controlled really well with Prevacid but now it is getting worse again. The burning in her throat has been the worst and it will be great if he can figure out what is causing it and fix it.

Last week I was thinking this next week was going to be fairly slow...that should teach me not to think too much! She will have her aquatic therapy Mon and Wed, OT on Wed, her EGD Thurs, then to finish off the week - solumedrol and methotrexate. Yuck! The first 3 days were sounding pretty good but the last 2 are going to be rocky. Please be thinking of our girl on Thursday when she has her procedure..the be thinking of me on Friday when she gets her steroids and methotrexate cocktails.

Tonight I would have added all sorts of cute new photos from our holiday trip but they are on my Mom's camera. When I can snag it from her I will get some pictures up.
We really had a great time and all Madeleine can say now that we are back is that she wishes she was back at Disney World. She would move in there if they would let her!

Since it would take hours to tell all about our trip, how about if I just tell a short story here and there for now?
One night we had dinner reservations over at EPCOT in Norway. They have a nice restaurant there that has a "Princess Dinner" every night. We were promised there would be at least 4 princesses there and it sounded like every little girl's dream dinner. OK - well, since it was the holiday season it was hard to get a reservation anywhere! So we had to take a pretty late time (for us!) to dine. It was like pulling teeth to get Madeleine dressed and back out of the hotel room to even go to dinner. When she gets back home from being out most of the day she is done and into her pajamas before you know it...this was no exception and she was all for room service and the bed! Mom and I managed to get her to EPCOT where we met Terry and William. They had been taking in some of the big rides that Madeleine did not want to go on. When we went into the restaurant there was Ariel greeting all the kids as they came in. Madeleine would not go to her and did not want to talk to her at all! She was ready to leave and let me know it! Under her breath she was telling me it was time TO LEAVE!!
GET ME OUT OF HERE!
I better back up a second and tell you that it was freaking cold there. Now, if you ask me it was supposed to be warm because it is FLORIDA! No, it was darn cold and we were bundled up in light jackets while everyone else was in heavy coats. Madeleine was wrapped up in her jacket and would not take it off when we were inside. She was holding it tight and would look immediately away when Ariel would glance over at her. While we were waiting for the hunk Norwegian guy to show us to our table I am listening to an endless chant of "get me out of here...let's go.... I want to leave...get me out of here...."
We get to the table and you can see the other princesses milling around the tables. There was Jasmine, Aurora and Cinderella!! Madeleine was more ready than ever to get the heck out and we took one look at the menu and got really worried. The food was Norwegian. I like just about anything but this was going to be a challenge. I do not do deer so that venison stew was out...Mom and Terry were looking a big worried too. It was going to take a couple of their special vodka drinks before we could figure out the food issue.
Then it happened. Aurora came to our table. Madeleine froze for a moment then she threw off her jacket and tossed it over me to greet Aurora with a hug.
I swear for a moment you could hear a chorus and Madeleine was BACK! She was all smiles and ready for dinner. All it took was some quality time discussing dresses and hair styles with a princess and she was back into form.
The waitress assisted us in our dinner choices and we all had the most wonderful dinner. I can honestly say that it was one of the best meals with awesome food. Madeleine was ready to greet all the girls as the stopped by to visit with her. I asked her why she was pitching a fit to leave just a few minutes earlier she kicked at me under the table and shushed me before someone heard what I was saying.

When she was done with dinner she posed with Ariel for a portrait before rushing me off to the Mexico area. That is where her favorite EPCOT ride is located in the big temple looking building. It is a quiet boat ride that goes through the Mexican restaurant. We went on it about 4 or 5 times before it was time for fireworks and bedtime.

Almost every night after tucking Madeleine in with Granny, Terry and I would take William back to the Magic Kingdom. He wanted to ride Space Mountain, Thunder Mountain and the Haunted Mansion every night. See why I am still trying to recover from our trip?

I will get my act together soon and give you photos and MMQ's!

All our love,
Connie and Madeleine

Wednesday, January 4, 2006 1:02 PM CST

Happy New Year!

We drove in last night after having a wonderful time at Disney World. This morning I am in a rush to pack up again to make the trip to Houston. Madeleine will see Dr. Warren in the morning at TX Children's.

She is doing pretty good in spite of playing like crazy at Disney. Her face is really pink and she looks like she is wearing purple eyeshadow but it's not because we did not cover her up. She was coated in sunscreen and wore long sleeves, pants and hat the whole time.

This morning she told me she was ready to see the doctor because she wants to talk to him about her legs being so weak and hurting. That is a breakthrough for her! Usually she will not tell the doctors a thing because she thinks they are not going to do anything about it but order more tests.

I will tell you about our holiday in Florida and about her appointment in Houston when we get back.

All our love,
Connie and Madeleine

Saturday, December 24, 2005 11:45 PM CST

Where the heck did the time go?
Believe it or not I am sitting here on Christmas Eve with all the gifts wrapped and all kids in bed. I am laughing at Terry because he did not do his wrapping and just now started.

Anyway, things have been very busy here!
On Monday we finally made it back to aquatic therapy and Madeleine had a great time swimming with Ms. Jill. They sang Christmas carols while William and I watched from the bench. I hope after the holidays we can get her there more often because it really seems to help her.

On Thursday we went to Y Medical for her solumedrol infusion and IV methotrexate. It really knocked her for a loop this time. She has had awful diarrhea and I have to get her into the GI specialist because the reflux seems to be getting worse all the time. When we left there I brought her straight home for chicken and dumplings and rest. She has felt so bad and has had a great deal of nausea. Thursday night she was up and down all night - that was only the second time in almost a month! That is much better than things were for a long time.
Friday and today were a little better. She is still crabby and tired but was not as nauseated today. I am hoping that she will feel better so we can all have a nice holiday.

Friday we had a very nice lunch with my dad and stepmom. That was the first time in ages that all 3 kids and Terry were able to go with me. Usually Terry is working or one of the kids has something going on.
Tonight we had a fabulous Christmas Eve dinner at my mom's house. The kids opened gifts and she had a big surprise for them this year. We are all going to Disney World tomorrow!
She gave William and Madeleine each a gift bag and told them to look over the clues inside and tell her where they were going in the morning. Madeleine figured it out right away and started shouting "Disney World, DISNEY WORLD!" Then she fell over in the floor like she fainted. William did not believe her and thought it was all a joke for a few minutes.
Do you know what I had to do real quick tonight? Yep, pack! Everyone is very excited and
it will be great to sneak away and have some fun. They all had plenty of toys and such so this is way better I think.
Madeleine was already planning what she wants to go first when she gets there.

Madeleine has an appointment with Dr. Warren on Jan 5th and IVIG is due that week also.

I guess I better go help Terry so we can get some sleep tonight.

We hope everyone has a very Merry Christmas and let's all have a safe and healthy 2006!
All our love,
Connie and Madeleine

Sunday, December 11, 2005 11:30 PM CST

Are you ready for Christmas? I'm not!
Last night I was finally able to leave Madeleine and William with Terry and do some serious power shopping. I was on a mission and was able to get a lot done in under an hour.
OK Terry, I know...I was gone way more than an hour but the rest of the time I was sitting in the car enjoying some peace and quiet.

Ready for one of my week in review style updates? I hope so!
We had a lot going on this week and then we had a darn ice storm that completely messed up all our appointments. Madeleine had about 6 days of school work and some grades to get finished and set into our home school program. The weather did help us out with that!

On Monday morning Madeleine woke up really crabby. Breakfast could not be prepared fast enough and then when it was done she ate everything and went back to sleep. This is so NOT Madeleine-like. Terry and I were getting worried when she woke up after about an hour and was complaining that her throat was burning. I phoned over to our pediatrician's office and thank goodness we were able to get right in to see Kelly. I hung up the phone to tell her we were going to run to the Dr's office just as she was running to the bathroom. Her breakfast was making a comeback and it was not fun. We got cleaned up and went over for Kelly to check her out. Have I mentioned lately how much we love the nurses at our pediatrician's office? Kelly is our nurse practitioner and she rocks. They swabbed Mad's throat for strep and that was negative - yay! We are thinking that the burning was her reflux acting up and was what caused her to throw up. She was feeling better by then but we stayed in the rest of the day for her to rest just in case it was a virus. After some Prevacid and chicken and dumplings she was as good as new.
We had a couple of appointments on Wednesday and we were up early to head out. I loaded the girl into the car as the rain was starting. By the time we were ready to pull out the rain was ice and we all know how much fun that can be. I phoned and canceled our appointments and a short time after that we got word that William's school was closing as soon as parents picked up kids. Madeleine and I went over and picked up him and Josh to come hang out with us.
I was worried about Andrew driving on the icy streets but he made it home safe before I had a nervous breakdown.
Madeleine and I did a marathon of schoolwork to pass the time and we did some craft projects.
Madeleine's doctor had given her the greenlight to get her ears pierced as long as a nurse did it. On Thursday we went back to see Ms. Kelly and with the help of another darling nurse Madeleine got pierced. Her brothers were less than thrilled but do you think she cared?
She was a little mad she could not see what they were doing but it went off without a peep from the girl. Later on she let me know that I was dead wrong that it was just a little pinch. I guess I was also wrong that it was easier than having labs drawn.

Friday we went over to Y Medical for a IV push of methotrexate. That was a quickie and we had the rest of the day to run some errands getting ready for THE party on Saturday.

Madeleine and Cleo's birthday's are within days of each other so we had one big party at Sweet and Sassy in Southlake. Beth had been over there to check it out and it is the place for girls! It is a salon where they cater to girls - hair, makeup, nails, and more glitter than you have ever seen.
We had all of our little JDM girls along with some other dear friends come out to celebrate with our girls. They have both had a tough year and we decided they deserved some serious fun. All the girls packed into a dressing room where they selected outfits to dress up in. Madeleine walked out in a pink shimmery number with marabou around the hem that trailed behind her. Cleo went for the animal print and looked fabulous in it! All the girls decked out in fancy outfits then took turns getting their hair styled and glittered - did I mention that they use a lot of glitter at this place? They all went from the 3 different stations doing hair, make up, and then nails. Before everyone was done the dancing had already started. They have a runway up the middle of the party area and the girls were dancing their little hearts out while the moms and Granny were snapping photos and taking video.
After they danced for a while the girls in charge lined them up in a little room off to the side. It was time for the runway show! One by one the announcer called their names and talked about their favorite things and places to shop. It was so cute!
After that it was time to dig into cake and enjoy being with their friends. Thank you to everyone that made the trip out to Southlake. We love all of you and had so much fun being together.
Our friends Tanya and her lovely daughter Nikki drove up from Houston to be with us - you guys are wonderful! Thank you and big hugs to Beth and Cleo for having a joint celebration with us. It was so special and we loved doing it with you guys.

Madeleine is seems to be doing really well right now. I hesitate to even say those words because all I can think about is how quickly that can change. Last year at this time she was waking in the night screaming in pain. Now she is driving me crazy climbing up on the cabinets to reach things. Last year I was relentless phoning the doctors office because Madeleine was getting worse. It took until January before it was determined that she was indeed worse and we had to step up her treatments and add IVIG to go after the disease more aggressively.
This past week I thought I was seeing changes. She seemed to be up and about more...spending less time laying down. Yes, she is still resting more than most kids her age but this is a big deal. She has come a very long way this year.
On Saturday I asked my friends if they could see a difference in her and I think they were surprised too. I am still very cautious to start letting my guard down. Especially when we keep hearing of children dying from this miserable disease.

Today we went to see Rudolph The Red Nosed Reindeer at Casa Manana in Ft. Worth. Madeleine gives it a 5 fluffy pretty poodle rating. We really had a very good time and the children in the production were precious. The songs were so cute and Mrs. Claus had a beautiful voice!
After the show we came home to decorate the tree - finally! I ran to the store to get a star to put on top. Madeleine has been asking for one all week long so I got one that looked just like the one they put on the tree during the Rudolph show. She was thrilled when I pulled the box out of the bag. "Oh! My very first star!! It is just in time for my 6th Christmas. You do realize that is a special Christmas for little girls, mom?"
OK - Terry held her up so she could put the star on top. It's done and we are ready....well, they are ready but I'm not!

Tomorrow we are running to Dallas to get a tooth fixed. That was one of our appointments that was iced out last week. Then on Tues and Wed it's Y Medical for IVIG.

I owe you a handful of MMQ's for sticking with us though the good and the bad:

To me:
"I do not like your attitude!"
my attitude??

"Leave them alone mom, they are just bonding."
No, they were not just bonding and it was something that cats and dogs should not be doing. Not to mention they were doing their "bonding" in the middle of the kitchen and I don't think one of them was enjoying it.

To Andrew:
"You've got to pick your battles."
"You are not even realistic."
Madeleine is one of the few I have seen that are able to leave that boy speechless.

"It's ok, I am 6 now."
You would think she had turned 21.

"I'm Suuper Madeleine!!"
Terry had to hold her like she was flying down the walkway outside Joe T. Garcia's. We had been there celebrating a special event for Cleo. Terry and I were checking Madeleine's glass to see what they were serving her since she got so goofy.

Thank you to all our dear readers. We appreciate you checking in on our girl.
Happy Holidays with all our love,
Connie and Madeleine

Wednesday, November 30, 2005 8:32 PM CST

Where the heck does time go?
We had a very nice Thanksgiving this year. Our gang was pretty tired from being in Houston and driving in late on the night before. We had a quiet day with food, family and poodles.

I am still digesting all the information from the Houston Dr's. They were super and we spent a long time with them discussing what would be best for Madeleine at this point.
We were speechless when Dr. Warren made comments about how it was not necessary for Madeleine to have so much pain at night. He wrote her a prescription for naproxen at bedtime each night. After we left there my goal was to get home before the pharmacy close to us closed so I could give it to her that night. She was in so much pain from being stretched and prodded during all the exams. Yes, I made it to the pharmacy with 30 minutes to spare. That meant we did not have to hike across Arlington to a 24 hour pharmacy!
She took it and has slept peacefully without waking each night since...except for last night.

Dr. Warren is concerned about the damage the steroids have done to her body. We are going to taper more aggressively and he also asked me to switch her to IV methotrexate.
You know I did not want to hear that. I hate giving it to her because it makes her so hyper and anxious. He explained that of the three forms (oral, injections, IV) the IV form has the least bad side effects. I agreed to give it a try and so far she is ok...I guess.

The Dr's in Houston really have a different style in how they treat JDM and focused quite a bit on her quality of life. They had a couple of drugs that she has not had before that they routinely use for JDM. It was interesting because all these were drugs I had been asking about. We discussed at length about her joints being hyper mobile and how that effects her condition and adds to the pain. He felt there is a need to increase her PT time and that her torso and neck muscles still have a lot of weakness.

I know I am leaving a lot out but Madeleine is feeling really crummy tonight. Yesterday she got her first IV push of methotrexate and it was much more than she has ever had. It went pretty well until around midnight. Before she went to bed the diarrhea had already started and her belly was sore. She was asking to go to bed before 8pm and then she was up at midnight. I heard her on the stairs and she was not crying - she just quietly went potty then crawled in between me and Terry and snuggled in. Terry got up to take her back to bed and then she started to cry a little. We let her stay and we played keep away with the cats and poodle the rest of the night. She was up early and really really really crabby.
I was shouted out of bed to make scrambled eggs and toast. Then being a bonehead, I used the "wrong" spatula and that caused her world to crash in. She screamed and cried before I had to duck so that the spatula hit the wall and not me. When things go this bad it does not help to punish her or to get mad...I just started ignoring her. She grabbed her phone and went to her room to call my mom and tell on me. I am pretty sure mom did not understand anything she said since she was sobbing so hard.
I finished cooking her eggs and put it all on a tray and put it in my bed where she usually has her breakfast. Shortly she came in and sat down to eat. When she was done she came over and hugged me and started crying because she was so sorry for being mean.
Poor girl - she hates when the drugs make her feel so awful and out of control.

After that meltdown she was very tired. We did school work until time to head over to Waxahachie and get in her aquatic therapy. She was able to get there twice this week already and even though she is worn out it is good for her to get into the warm water and stretch. Her PT works her out while they sing songs bobbing around in the pool.

After we got back home she has wanted us to hold her. When Terry came in from work I handed her off to him to hold for a while. She has been wrapped up in her quilt telling us "I don't feel good" over and over.
She does not look very good but I think if she gets some rest tonight she will feel better.

Madeleine decided she wants her ears pierced for her birthday on Friday. She picked out these giant pink sapphire earrings that would dangle down to her elbows. We are trying to get her to grasp the less is more thing but she is not budging. She said she wants princess looking earrings.

Tonight Mad and I want to send a special shout out to our friend Nikki and her mom, Tanya.
Nikki got her picc line out on Monday and we are so excited for her! She is done with IV meds and graduated to all oral drugs wooooo hooooo! WTG NIKKI! Could you hear us cheering all the way up here when your mom told us this morning? ;)

All our love,
Connie and Madeleine

Saturday, November 19, 2005 10:45 PM CST

Can you believe that Thanksgiving is next week? Don't even say the Christmas word!
There was a time that I would have been done with shopping and helping everyone else get theirs done - not these days!

Madeleine received her IVIG infusions at Y Medical this past week. That is the first time she has ever had them outpatient and it went better than at the hospital! We did not have any meltdowns and her mood was really pretty good. We played cards and watched movies. She had her little bed spread on the floor with a pile of pillows and her quilts. Did I mention how nice it was to come home in the afternoon and let Madeleine rest at home? Here's one better! We were able to crawl into our own beds!
I think the folks at our clinic were happy too because the nurse informed me that we needed to plan on getting all of Madeleine's treatment at Y Medical from now on.

Her pain continues and it's usually better early in the day but towards late afternoon she hurts more and is so easily exhausted. I've been told that I needed to be more patient and that I had really not given it enough time. I hope they also remember that this is my child and how they might feel if it was their child in pain.
I am too tired to get on my soap box so don't get worried! ;)

We were only able to get to aquatic therapy once this week. Her therapist would like to try and get her in twice a week and we are going to try and fit that in soon. Madeleine loves it so much and I hope it will eventually help her gain some stamina. With the weather getting cooler that warm pool water looks so good from the bench where I wait. We are thankful we have such a great facility to take her for therapy.

Wednesday night mom took Madeleine and I to Dallas to see the Disney On Ice Princess show. We call it Cinderella on ice but I think it does have a real name. Madeleine had a complete blast and enjoyed every minute of it. Our seats were on the first row on the floor. If you go see it try for those seats! At the end all the princesses and princes come over to the side to hug and shake hands with the kids. The performance was so good and the costumes were dazzling. Everyone gives a complete 5 poodle rating!

Madeleine, William and I were in line yesterday afternoon for the new Harry Potter movie. William spent most of the time in the line having a nervous breakdown that I was letting Madeleine go to a PG-13 movie. She has seen the other 3 and knows all the stories - how can she not with older brothers? I tried to talk her out of it but we all know how flexible she is one her mind is set on something. ha ha ha ha ha ha
So, here we are in this line where I am sure that everyone around us probably has a fever and they most likely have the nastiest viruses and colds and the FLU! ugh!! William keeps muttering under his breath "..how on earth can you let her go to this...I was way older before you even considered letting ME see a PG-13 movie...." Meanwhile Madeleine is sitting on the floor playing gameboy and ignoring both of us.
I just about grabbed her and ran by the time they let us into the theater. We had awesome seats...not that Madeleine sat in hers since she jumped into my lap during the first 15 minutes. William started out with us and then went to sit with friends from school after he spotted them come in. William and I liked the movie very much. Madeleine claims it is horrible and gives it a big 'ole single poodle butt. She told me to make sure you understand that is the worst rating. Lower than just a single poodle - we are talking a poodle's tail!

We head for Houston next week to meet with the doctors at Texas Children's Hospital. Then we are going to be hurrying back to have Thanksgiving.

On to the MMQ's! :

"Baby goats should not be called kids. That is boring and I am going to call them goatlings from now on."

"I keep getting burglared!! GRR!!"
On Madeleine's gameboy Sims game they are awful about stealing her toilet or shower when she is not at home.

"Those cats are so runny today."
Our cats were indeed running around chasing each other a lot.

"That is sarcasm, momma. I know sarcasm when I hear it so please do not use that sarcasm on me!"
All I did was tell her that it was going to take a long time for the train blocking the road to cross. It's not my fault she had to potty really bad. I don't think they taught her about sarcasm in her school work yet...

Madeleine :"Andrew! What are you doing?"
Andrew: "standing"
Madeleine: "Fascinating."

"Over here - Yes, I will take one of the magic wands."
She is just so business like with the vendors selling in the seats. It seems like just yesterday she would motion to the beer man at hockey games telling him "I need a Bud Yight! I need BUD YIGHT!!"

Leeeeeeenda and Elizabeth - we love you guys!! XXXXOOO

All our love,
Connie and Madeleine

Tuesday, November 8, 2005 9:33 PM CST

Hang in with me because I am having a "I don't even know where to begin" moment.
Last week we had clinic on Wednesday then she was admitted for IVIG. There were many issues we discussed with Dr. Punaro and that made for a long morning in the clinic. We went over why Madeleine's pain continues and has been worse over the last month. She complains often about her legs, back, feet, arms, and hands being weak, stiff and/or hurting.
We are going to see Dr. Warren at TX Children's Hospital in Houston just before Thanksgiving. I am hoping he might be able to come up with ideas to help us get Madeleine into remission one day. This will also give me some peace of mind and we will be doing everything we can on our end to make sure she has the best chances possible.
Dr. Warren is chief of rheumatology at TX Children's and I have heard great things about him and the other staff rheumys there. A couple of them specialize in juvenile dermatomyositis and we have friends that are seen there.
Dr. Punaro also ordered an immediate MRI to see if it would shed any light on what is going on at this point. We did it Wednesday afternoon and it showed she has hip effusions. They were worse than in her last MRI but this was all news to us. We were not aware that she had them at all. The Dr that read her films commented that the right hip is worse than the left - maybe this is why she seems to have more pain in her right leg? I have not been able to discuss any of this with a Dr yet. Dr. Punaro is out of the office until after Thanksgiving so we will talk to her about it on our next visit. Meanwhile I can take all that information to our appointment in Houston to get their opinion. I am concerned that her hips have gotten worse in spite of the large amounts of drug therapy she has been getting.

Dr. P did change up Madeleine's treatment schedule and we are going to cut back on the solumedrol a little more. That was just fine with us! Madeleine has been getting large doses of that stuff for 20 months now and I am ready to see if we can try and use less of it and add in something else that will help. The plan is to get solumedrol for the usual 3 days once every 4 weeks. Then she is increasing her IVIG to every 2 weeks. That does not have near the side effects as the solumedrol and she feels better after it, unlike the solumedrol that makes her feel miserable.

While we were in the hospital Madeleine did biofeedback again with her psychologist. She loves it and gets very relaxed. Dr. Curtis gave her a little card with tiny stickers that you peel off and put on your hand to practice relaxing if you are stressed. The card looks like a credit card and the stickers change color like mood rings do.
Madeleine calls it her "mood swing card" with "mood swing stickers". I love that and cannot help but laugh when I see her with one on her hand.

We have not had too much excitement here at Camp Chaos - for once! Madeleine and I have been busy working on her school work. She is memorizing some new poems and I just love to hear her recite them. Sunday evening she put on a show over at Granny's house. Mom has a small topiary and it makes a perfect microphone for Madeleine. She grabbed it up and performed her favorite songs and poems for us. It was very funny and she was in fine form!

Monday was aquatic therapy in Waxahachie and Madeleine was thrilled to get back into the pool. It had been a couple of weeks and she really enjoyed it and sang the entire time she bobbed around in the water. We are going to try and fit 2 days of therapy into our schedule on weeks that are not already full of appointments.

This morning we had to stop in at Target and grab Charlie and the Chocolate Factory. Madeleine was trying to get the wrapper off before we could get back in the car. She has been counting the days for it to come out and the timing was great. We were on the way to Y Medical for her to get solumedrol - the fun never ends..NOT!
I put her blankets on the floor and made her a little bed so she could lay in front of the TV there and watch her new movie. That lasted a long time and she was content with only one game of Go Fish. We just have to make it through 2 more days of that and she will get at least a 4 week break from that for a while!
Next week will be IVIG and we are going to get it over at Y Medical instead of her having to be admitted to the hospital. It will be so nice to do it there and then get to go home and not have to be inpatient. Madeleine loves all her friends at Y Medical and is very much at home in their office so this will be much easier on all of the family.

After we got back home late this afternoon the mood swings set in. I made a comment about how she needed her mood swing card but that did not go over well at all. She just mumbled something and ignored me. Then we went through the usual routine of Madeleine being starved for a specific food, then she eats a small amount of it. After that she is stuffed and holds her belly groaning because it hurts...then 15 minutes later she is starved again for something else. I try really hard to be patient since I know it is the drugs and the food all goes through her like she is a goose. It is so hard on her digestive system and I will be happy for her to get a break from that part of it.

Tonight we gave Little Willie a nice haircut. Terry seems to think that my mom will not be too thrilled with her grandpoodle's haircut. She is out of town on business and I just want her to know one thing - Mom, it is not my fault! Terry did it and Madeleine likes it.

I just have one MMQ for tonight -
We were in a store and a nice lady asked Madeleine how old she was, Madeleine replied:
"I'm a very mature five."

All our love,
Connie and Madeleine

Sunday, October 30, 2005 8:56 PM CST

Hello!
We just got in from a few days in Houston for the International Quilt Show. It was so much fun and we saw some cool stuff! Since we are all tired and I have to get some clothes in the washer I will have to give a quickie update.

Monday, Tuesday and Wednesday we were at Children's in Special Procedures for Madeleine to get her pamidronate infusions. They went well with no complications. She kept me busy running across the street to the main building to get food from the cafeteria. We had the most amazing nurse and Madeleine loved her. It was nice for everything to go so smooth and nothing unexpected came up.

After we were done on Wednesday it was time to hurry home and pack for our trip.
We met up with my mom and Aunt Pat and had a ball checking out the show. It is huge and takes up the entire Brown Convention Center in Houston. We saw as many quilts and shopped all the vendors we could. I wish I had taken a photo of the bra purse these ladies were making! It was hysterical and there are just not words to describe it. You take an actual bra and fold it together and glue the underwires flat against each other. I guess it's one of those things you have to see in person to appreciate....

Madeleine is very tired and was complaining of pain on the way home. She has had lots of leg pain the last couple of weeks. It is hard for her to stay comfortable at night. Hopefully she will sleep all night in her own bed since she was worn out when we got back home.

Here are the best two MMQ's from today:

"I can just see Little Willie having a nice massage and getting his toenails painted!"
We saw a sign in Spring, TX for Fee-Fee's Poodle Grooming. They had a road sign with a big poodle on it that could not be missed.

"Don't be alarmed, people! It's just Super Madeleine eating her lunch!"
She was chattering away to herself as we drove....

I know there is loads more that I could tell but everything and everyone is beat.
Tomorrow Madeleine is going to wear her costume to visit the dental clinic at the hospital.
She is so excited!

All our love,
Connie and Super Madeleine

Saturday, October 22, 2005 11:04 PM CDT

Madeleine does not seem to bounce back after her solumedrol treatments like she used to.
Last week seemed to drag on forever. She has done lots of laying around alternating between eating a few bites of everything in sight and holding her belly, groaning.

When we first started this journey ages ago (March 2004) she would be tired, crabby and hungry. But at this point she gets so worn down that she does not move around much. When she does she ends up in pain and then it's all bad from there. Back in the beginning we would see lots of improvement between treatments. She would be playing more and she was more active. The pain has always been there and that does not seem to change. Now between treatments she really does not show much improvement. In fact it's all pretty much the same. That was what I have told the docs lately and I am not sure they are really listening to me. If it's all the same then that indicates to me that we are NOT getting any better...unless I am way off, that is our goal -- IMPROVEMENT!

I will refrain from getting on my ragged old soap box and I will not twist it all into an If You Give A Mouse A Cookie story. I did break down and take Madeleine to Target on Tuesday after her solumedrol infusion. Am I asking for it or what? Well, what really happened was this. Terry's mom arrived on Saturday to visit for a few weeks. When we got back home from Y Medical on Tuesday a very drugged up Madeleine told me "Grandma wants to run to Target." I know I should not have fallen so damn easily but I was reeled in like a big ol' bass.
Sure, I told her. If Grandma wants to go there that is fine with me. Madeleine goes downstairs and I later find out that she told Grandma "Mom wants to run to Target so let's go!"
What a big sucker I am. UGH!! When I realized that I had been fished in I could not say no. She looked so bad and probably felt as bad as she looked. I just could not do it and we went. She did the usual and walked up and down the toy aisles and could not make up her mind. It was like she was in a steroid haze and I do not think she was capable of deciding anything. Finally after some time there I got her to accept a Barbie set and we left - quickly!

During treatments this week she was really good and we managed to avoid any big meltdowns. She did get into a panic when she realized I was going to be the one to access her port. We had done loads of practice on the dummy and our wonderful nurses wanted me to do it. She put on a smallish scene and we ignored it and got her accessed without too much drama. It was all nerves on her part - "You have not stuck a LIVE person yet MOM!"
We had put Emla on her so she was numb but she complained enough to have me sweating bullets. Everything went fine and I passed thankfully.
Each day we were there for infusions she had the same lunch from Boston Market. Then she would sit on her blanket on the floor and play CD-ROMs while the medicine ran. Her blood pressure stayed down and she enjoyed Grandma playing and reading books. I enjoyed the lack of meltdowns.

Tonight when I was helping her off with her shirt she squealed in pain. For days she has been complaining that her armpits hurt so I got her under the light and got a good look at what is hurting. She has large swollen glands under both arms. It has been a little while since the last time she had swollen glands. This time it's under both arms and they are really swollen and red. I just applied some warm compresses. One specialist I have spoken to about this said that swelling in the glands indicate active disease, in her opinion. More of the same...

It has just been one of those weeks where I sit back and demand "what next??".
Monday morning Andrew called us when he arrived at school and said he was having car trouble. Terry jumped in his pickup and went over to the school to take a look at it. He wanted to see what he could do before he had to be at work. I had just stepped out of the shower when Terry phoned me and said that he needed me asap. He said that he had been in an accident in front of the school and I needed to get there. I told Terry's mom where I was headed and jumped into my car. Madeleine was still in bed and I was hoping this was not going to be too serious and I would be right back home.
When I got there I saw at least 10 wrecked cars but not Terry. The first policeman I saw told me that he was up at the front of all this. I must have looked stressed because he told me that all these other cars were separate accidents that had happened and Terry's only involved 3 vehicles, not a dozen. I found him in an ambulance behind his totaled pickup.
They would not let me in but they finally opened the door. His truck did not have airbags so his chest had hit the steering wheel and they were checking him out. He had some crazy blood pressure and was a little dazed so they took him to the hospital to check him out.
I am so glad he had his safely belt on and he did not hit his head. He is fine and nothing was broken, just very sore and a little beat up.

I will not be asking what next again!

Let's wrap this up with some fun MMQ's from the past week.

"Come on you jerks!"
I don't think that sounds very nice for a little girl to be saying.
"Give me a break mom, I mean I am almost 7!"
I guess I missed her turning 6??

"It's gonna be fit-mania around here!"

"Hey look at this. It's Bread Hole... Bread Hull!"
She was playing with a chunk of Italian bread and had taken out the center. Somehow that reminded her of one of her favorite hockey players, Brett Hull. When she was little it would sound like she was saying Butt Hull instead of Brett.

"You better not embarrass me with this mom"
I was about to get my flu shot.

"Get over it - it's just a flu shot!"
When I pretended to be scared for her. She was not amused at all.

I hope everyone is having a nice weekend. Monday we will be heading to Children's to get her first pamidrinate infusion. If all goes well she will be getting it again on Tuesday and Wednesday. After that we are going to head to Houston for the big International Quilt Show.

All our love,
Connie and Madeleine

Thursday, October 13, 2005 11:31 AM CDT

Our week has been really busy so far!
On Tuesday William turned 12 - Happy Birthday to William! He also got his report card and has nothing less than a 97. WTG William!! He has been working so hard and we are so proud of him. He is in advanced math classes and amazes me how quick he is in that subject. This is a good thing for me because I will have him and Andrew to help Madeleine with her math homework. :)

Speaking of Madeleine, she is doing great with her school work. We have to work hard to keep to our schedule that was planned for her with the curriculum. I have tried to stay a little bit ahead so we don't loose too much ground when she is not feeling good or in the hospital.
She was reciting poems to William the other day in the car and he was floored. He is convinced there is no way this is kindergarten work.
Monday was a school holiday for William so he got to watch her during aquatic therapy. She would give him her princess wave as she bobbed back and forth across the pool.

I guess I need to back up and talk about last week. We had clinic on Wednesday and saw Dr. Punaro. They tested her strength and that has stayed about the same as the last couple of months. The good thing about that is we are not losing ground in that area. What is not good is that she continues to decline so much between treatments and that she is so easily fatigued. She is still coping with pain if she is very active. Then the pain at night can start up even if she has not been very active. The Dr said that we are going to stay on the same plan of medications and then repeat her MRI at the end of November to make decisions about how to proceed.
I requested that they slow down her ivig infusions with more increases in rates. When they give it the pump is programmed at a very slow rate to start. Then every 15 minutes they take all vitals and increase the rate just a little bit. Since Madeleine has had reactions before of headaches and has even woken up with nausea, they have given it to her when she was sleeping. I wanted to see if by slowing it down she could get it during the day and we could get home faster by not having to spend an extra night. Well, it worked!
She tolerated it much better by slowing it down and even played and walked around some while she was getting it. They pre-medicate so she would be woozy for the first hour or so but after that she was ready to be entertained.

It felt so good to be home late Thursday evening! Madeleine was so happy to be back with home to snuggle with her dog and watch tv. She has rested quite a bit and has been getting up more at night. That seems to be typical of the week before solumedrol treatment.
She is scheduled for that on Tuesday, Wed and Thursday this next week. Terry's mom is coming in this Saturday and will be someone fresh for the countless card games and book reading. I think Terry can recite all the Berenstain Bears books from memory now since she makes him read them every night. Cousin Amy and her granddaughter Samantha sent Madeleine a big box of Berenstain Bears books and that has had her in bear heaven.
I think Madeleine gets her ability to memorize from Terry because it comes to easily to both of them after they read a book once or twice. She will be sitting there flipping through a book and reciting like she is reading the pages.

Madeleine and I have been suffering through watching the Stars games on TV. She always sits here looking for Granny and Andrew in the crowd. She never sees them but is always sure that she spots Heather first. After that she is sure she sees Julie and Amy. I think she is only missing being at the games because of the assortment of foods she could be eating there. I do not miss the food at the AAC at all...I do miss the friends and hockey though!
Since we are always so worn out by 7pm we would probably fall asleep before they could drop the puck.

Did I tell you that Madeleine is ready for Halloween? She picked her costume out weeks ago and is going to be Hermione from Harry Potter. It looks so darn cute! It has the Hogwarts robe, wig and wand. Not just any wand but the official Hermione wand. She thought she would be able to turn Andrew into something but has been disappointed so far. I told her just to keep trying.

My life is in stacks all over the place these days. I have a stack of Thank You notes I need to write - sorry!!! I know I suck! Then there is the stack of laundry - hey, it's CLEAN and Terry folded it! Stacks of books I am in the process of reading or re-reading for information on juvenile myositis. I also have "stacks" of e-mail sitting in my inbox that need replies - sorry!
Wait, I just realized something! All my stacks are things I need to do! Madeleine has stacks too but hers are not dishes or laundry. Her stacks are the favorite books she likes to keep close by, coloring books and color wonders she is working on. Piles of Pollys and Barbies with all the gear you NEED to go along with them to play. You realize that you cannot just play with one doll and one change of clothes? Right?? You have to get out loads of houses, cars and swimming pool sets. Then about 5,000 little shirts, dresses and shoes to do anything. Like if you are going to play for just 10 or 15 minutes - you have to get all that stuff out.
I bet I could work all that up in a If You Give A Mouse A Cookie story but I will spare you.
Instead have a couple of MMQ's:

"You are spoiling me again Mom. I have asked you not to do that."
What??

"Look at this! I made a tiny incision here. OK, it's a big incision."
She was getting a little carried away when she was cutting up her own apple. FYI she was using a toy knife.

I have to go see her cursive h's she is working on.
We hope everyone is having a great week.

All our love,
Connie and Madeleine

Tuesday, October 4, 2005 10:09 PM CDT

We had a quiet weekend trying to rest some from a busy week.
Madeleine had been looking forward to aquatic therapy this past Monday and she could not wait to get there. She looked so cute in her swimsuit and loved every minute in the water. Her therapist was great with her and she had a tough time holding Madeleine back some so she would be not overdo it. Needless to say, she overdid it. She started yelling about the pain before we made it home and then she was up and down all night long.
We gave up trying to get her settled into her bed and Terry stuck her between us. She tossed and turned and moaned in her sleep...when she did sleep!

Today she had OT and it was not near as hard on her so I hope she sleeps tonight!
We have to be in clinic early in the morning and then she is admitted for IVIG. I do not believe we have seen any changes on this end. She is still very weak and having pain.
Her skin involvement looks worse, especially on her hands. We will see what the Dr has to say about it tomorrow.

Children's called me today and set up her Pamidrinate infusions. It is going to be about 5 hours a day, 3 days in a row. The first one will be just before we go to the quilt show in Houston later this month. Yike! It will be done outpatient.

Before I jump in bed here is a handful of MMQ's from the past few days:

"It looks like a nice butternut gold to me."
Her reply when I asked her what color something was.

"I am the glue queen!"
Working on a mosaic project...she is a glue maniac!

"I declare this land is Madeleine's!"
During one of the three showers a day she has been taking.
She missed being able to get in the shower or bath and just play in the warm water. Now that she is able to again it has been hard keeping her out of the tub.

"It's really weird how everything a skeleton eats comes out its diaphragm."
Some of her comments just make me go hmmmmmm.

I will let you know what we hear from clinic after we get back.

All our love,
Connie and Madeleine

Thursday, September 29, 2005 9:48 PM CDT

I wish I could get off my backside and update sooner! Sorry!

On Monday we met with Dr. Seikaly in the nephrology clinic at Children's in Dallas. He is amazing and we all liked him and his staff very much. We had been to this clinic before for a DEXA scan so they already had files on the girl and that meant I did not have piles of paperwork to fill out - yay!
When we were going over history with his nurse practitioner she seemed surprised that we had not been referred over sooner for Madeleine's bone density issues. It seems that we needed to be doing more to address that. She put all that information together with the lab reports so that Dr. Seikaly would be able to talk to us about everything.
They ran a urinalysis and she continues to have blood showing up. He went over all of it and decided that he is going to monitor that for a little while. It seems we are going to be seeing him fairly often so he will be on top of it. He did say that it did not surprise him that she had blood showing up because of her list of medications.

We covered that part of the visit fairly quickly. Then he went on to the other stuff.
He said that the calcium carb we had been giving Madeleine was not working. I was not given directions and so I was just giving it to her. Well, as it turns out you have to take without eating for an hour prior. Then no food for an hour afterwards....who knew??
He gave us the name of another calcium supplement that he wants her taking that will work better for her. I hope it works better because it was so hard to find! With the help of one of the girls at his office we finally got a box from a pharmacy at another hospital.
It is going to be very important that she get loads of extra calcium because he is starting her on Pamidrinate. It is a IV infusion that you get a couple of days in a row every 3 months.
He gives it very slowly over 4 hours each time. This drug pulls the calcium from the blood and directs to the bones. He said it is beyond important for her to be taking in a lot of calcium now.
I kept pointing out how we thought we were just there for the kidney issues and then all this other comes up.
Dr. Seikaly told us he will also be monitoring Madeleine's hypertension.
In the end it does feel good to have a specialist looking after all her extra complications that have shown up.

On the way out I found myself going back to If You Give A Mouse A Cookie.
At this point in my life everything can be summed up using that story.
If you take Madeleine to the doctor she will have blood in her urine. If you are there for blood in her urine the doctor will want to talk about her poor bone density.
When you are talking to her doctor about her poor bone density he will let you know that that is a very scary issue and we must do something about it now.
Then he will prescribe another IV drug.....
I think you get the idea. If not then find the book If You Give A Mouse A Cookie.

When we were on our way home from Children's I spoke to my friend Kim on the phone. She is Brianna's mom and they were on their way home from Children's also. Bri has viral meningitis and has felt awful. Poor Bri was yelling in the background about wanting to stop at Subway. I started blending Kim's situation into a If You Give A Mouse A Cookie book.
I told her:
If you take Brianna to Subway she is going to want a turkey sandwich. Then when she gets it she will promise to eat the bread - if you will just take her to Subway! When Brianna gets that turkey sandwich she will take one bite of the bread and then toss it at you because she does not like the bread. She will eat the sliced turkey. Because if anyone out there that is reading this knows Bri then you know that her favorite food is deli sliced turkey.
Then she will want a cookie....

Kim and I just laughed. It was one of those days when if you don't laugh you are going to cry.
Brianna is feeling a bit better. She went through some very rough days with terrible pain and no one wanted to medicate her for the pain. It has been very hard on them so please keep them both in your thoughts and prayers. Now she is battling a infection around the site where her mic/key button is...I promise I will spare you the If You Give A Mouse A Cookie version because it is possible to make one out of this too!
Kim - if you are reading - we love you guys! Bri - please feel better!

On Tuesday we headed over to Y Medical for solumedrol. Has it been 3 weeks already??
Madeleine had woken up really crabby and that is not a good way to start off solumedrol.
I had bought her one of those new (trampy) looking My Scene Barbies. She has been seeing the commercials and wanting one in a bad way. The night before I got the idea that I probably should get one and some new pajamas for her to wear over to get her medicine.
Mom had picked up a pair of adorable Nick and Nora ones at Target and the shirt buttons up the front. It's perfect for her to wear when getting medicine because we can run the tubing out through the gaps between buttons. I know that is trivial but as long as she is comfortable and not getting anxious over her shirt pulling up.
Soooooo - when Terry had walked in the door at 9:30pm Monday night I grabbed my keys and purse and hit Target. Ours closes at 10 so I had to hurry! I was about there when I realized that I was in a big baggy t-shirt that I sleep in with sweat pants and flip flops.
UGH! Please don't let anyone I know be in there!
I ran through the front of Target like OJ Simpson in those old commercials sprinting through the airport. People there had to think that some loony woman was up to no good running down the aisles with nothing but a Barbie and a pair of children's pajamas. The clerk rang me up with a minute or two to spare. I was out of breath though and had to check a couple of checkouts over for a cold Diet Pepsi.
That was the long version of why I had a My Scene Barbie in my car at Y Medical on Tuesday. The girls there had a photographer there to shoot some photos they are blowing up for a trade show booth. They asked me if Madeleine could be in the photos - well, yeah!
Of course, she was so crabby and not smiling at all. I promised her a big surprise if she cooperated. She wanted more that just the promise of a surprise so I told her it was in the car and to just SMILE! She figured out that I had the coveted (and gaudy) My Scene Barbie so she was more than happy to vamp for the camera.
I had a happy little camper for the rest of her treatment. She had a very tough night though and was up off and on from 1 am on. It wouldn't have been so bad if she could have just settled in with us but she was wide awake, miserable and hungry.

Wednesday was pretty quiet. We played lots of card games and Madeleine called my mom and got her to come over and have lunch at Medical Y with us. Time flew and before we knew it we were done for the day. At home I was ready to settle in for spending the evening resting and maybe catching some preseason hockey on tv. Madeleine had other plans.
She had a big ol' steroid meltdown and HAD to go to Target. When I said no she was on the phone calling my mom to tattle and appeal to her to take her to Target. Mom and Andew were on their way to the Stars game and so that did not work. Mom told me she would get her the toy she wanted - to just take her up there.

If You Take Madeleine To Target...when she just finished her 2nd day of solumedrol you will be sorry. Up and down the aisles we went and she found the toy she wanted...but did she really want it? She did not know. We looked at everything on several aisles of stuff. Then we went over to the DVD's and we looked there. Back to the toys....looked more. She was getting more tired all the time and after awhile she was looking very pale. That made the red blotches on her face look even more red. She finally decided on what she wanted...the Littlest Pet Shop's Whirl-around Playground. That was it!
At the checkout she was looking worse by the minute and I had to hold her and manage the stuff to the car. When we got back home she was too sick and tired to play.
We set up her toy and got out her little pets and she laid down on the floor beside it until time for bed. She had fallen sound asleep before Terry got home from work to carry her to bed.

This morning we slept in a little and shared cinnamon roll bites in bed before it was time to get ready to go. Before we left she told me she did not want the needle out today. This was going to be her first de-access and she said she just wanted to leave the needle in. Uh oh!
She seemed ok when I explained that it should just pull and not hurt too much.

I was feeling good about today going well. She was ready to play with her new stuff and everything seemed to be going well....right? No. Trish had her hooked up and the meds going when she had a big screaming meltdown. Nothing would console her when this happens and we just have to wait it out. Finally Trish and I left the room - we could still keep an eye on her. The room has french doors so you can see right in the glass.
We had port training time and I learned how to access and de-access her port. They have a chest mannequin that you learn on and they put in a port so that we were sticking into an actual port. It was really interesting and it went great. I want to make darn sure that no matter where we are that the proper supplies are used and we do everything we can to avoid infection. Our nurses at Y Medical are so concious of taking care and I think that is why we were so lucky with the girl's PICC line. It would have keep on working for a long time but this is so much better. I know that the training they gave me and all the good care and caution is why she has done so well. I just hope that continues! :)

While we were in class Madeleine had been busy phoning up my mom and telling her how awful I was. It was one of those "..you are the worst/hateful/mean mother in the WHOLE WORLD!!!!" fits. After she did that she put her blankets and pillows on the sofa and went to sleep. We peeked in and she was out! That was a good thing because her b/p can be dicey on that last day of pulsing.

Later when she work up she was like a new child. Very quiet and not saying much. She was so polite and asked her nurse if I could please come back in the room with her. That kind of guilt goes right through my heart!! Can this kid dish it out or what??
She was so sweet. We sat on the floor and had a little picnic lunch together. After that we inventoried her Littlest Pet Shop pets on a chart to see what she has and what she "needs".
We were busy working away when the pump started beeping! Yay!! She was done!!
Madeleine was not as thrilled as me. She was very nervous about the needle coming out.
We laid her down and got everything ready and Trish explained everything to her as she removed the dressing. Madeleine decided that it will be better to use the sorba view dressings than tegaderms next time. If she has some say and feels like she is a part of things she is so much more comfortable. Trish told her to take a deep breath and blow like she was blowing out a candle and it was OUT! For the first time in ages she did not have some sort of tubing taped to her! yay!!
She looked up and said "That's it? It's out? That's all?"
Now she gets a break until Tuesday before we will be accessing her port again.

We headed home and she had big plans. Dance class was at 3:45 and she was going to go and take her pillows. She wanted to just go and watch her class and listen to the music. Plus she wanted to get in the bathtub! We had time for that!
The closer we got to home the more she wilted. Just before we pulled in she said that she did not feel well enough to go to dance. I told her that it was ok and they understood that she was tired. Poor kid! She rested and this evening we put her in the bathtub. It's strange not to have aquaguards over dressings and trying to keep her and the dog from getting things wet that must stay dry! She still has some steri strips over 2 incisions but they look great and should start to come off soon.

Hopefully that good warm bath and the benadryl and tylenol will help her sleep peacefully....or at least sleep in her own bed.

Since I just wrote a really long short version for an update - here is just a couple of choice MMQ's. Next time I will try and shoot for more MMQ's and less of my rambling. :)

"That is so freaky! I don't really know what freaky is but that is freaky!"
She was watching a lightning storm Wednesday night.

"Try on of these mom! They will put your taste buds on a journey!"
I had to stop this morning and write this one down. She had just taken a bite of some cinnamon rolls Terry had made for her.

I really do have some fun new photos so I will work on that soon.
All our love,
Connie and Madeleine

Friday, September 23, 2005 10:28 PM CDT

Wow - what a week! So much news and so little energy to report it!
Last things first - Madeleine had her port a cath surgery yesterday. It went very well and she was amazing. I expected her to have a meltdown on the way or when we got there but it did not happen. She had counted down the days and was more than ready. When Terry went down and woke her up Thursday morning I had hid my Diet Pepsi that I was downing so she would not see it. Madeleine loves her meals and does not tolerate missing one very well! :)
She did not say a word about food before the surgery - not a peep about it! When Terry brought her into our room she was happy and ready to get dressed and go. We picked up my mom and were on our way into Dallas by 6 am. Madeleine had got the DVD Shark Boy And Lava Girl so that is what she watched on the way there. We started it when we left and it was just ending when we arrived at the surgery center. It was so funny to look back in the dark and see her little face with the big 3-D glasses looking up at the movie.
The surgery center Dr. Renard uses is right on the edge of the Medical City complex and it was very nice. The nurses were so good to Madeleine and it was a very positive experience for us all.
Cinda came over to be with us and that made it so much easier for ALL of us. We are so grateful to her for getting up early for Madeleine.
They gave her some oral Versed and it took a little while before she got a little silly. She was watching Clifford and then giggled that he had 4 eyes. It was fairly soon that they were wheeling her off and she was giving us a princess style wave from her gurney.
It makes it so much easier (if it is possible for it to be easy) to watch your child going into surgery if she is laughing and waving at you.
In two shakes of a poodle's tail she was out and into recovery. She must have been doing great because they brought her right back to her room in just minutes.
When she was back in the room she was starting to wake up more. They said they had given her some morphine because she was very upset when she first woke up. Right away she was trying to lean up some to pull her gown away from her arm - she wanted to see if her PICC line was really gone. Her reaction was so cute that it was indeed gone and there was not even a bandage! Just a mark were the catheter had gone in. Then she was pulling at the neckline to see where her port is now located. It is on the right side of her chest and she seemed very pleased to see there was in fact something there. The Dr left her accessed because she is due for her solumedrol on Monday. That changed until Tuesday but it will be just fine.
After Madeleine inspected everything she noticed some tubing and one of the nurses mentioned something about an IV. The girl was not pleased. She wanted to see that too!
It was in her foot and she told then she wanted it out now. Her sweet nurse went right to work preparing things to get that out and us on our way. Madeleine sat up (sort of) and watched them take it out and we got dressed and ready to go.
She had been asking for jello but they did not have it at the surgery center. They had popsicles but she wanted jello. We said our goodbyes quickly and headed out for jello. I checked with Cinda and we headed for the closest grocery store. The first one did not have any jello that was made up - ugh! We ran up the street to Tom Thumb at Preston and Royal; I knew they would have it. Who would have thought that everyone in Dallas would have been in the grocery stores stocking up for the hurricane - ugh!! The parking lot, which is under construction already) was completely packed and the store was full of people. I was weaving through people imagining my mom trying to keep Madeleine calm while she was stressing about jello. When I got to the back of the store I grabbed a package each of cherry, orange, strawberry, and raspberry. I wanted to cover all my jello bases so that I would not have bought the wrong one! At the check out I am sure I looked like a nut with my arm load of jello. The other customers had cart loads of bottled water and such. I trotted back to the car and tossed the jello to mom and Madeleine.
She spooned in a bite and was done. The oral Versed they gave her earlier had left an awful taste in her mouth and it took quite awhile to go away. After her bite of jello she lay over on her pillow and went to sleep. That made the trip home much easier!
We spent the rest of the day at home with her resting. She has had some pain but it handling it well. The surgeon gave her a rx for tylenol with codeine but she won't take it. There is something about the smell that makes her gag and I am not going to force her to take it. It was tough for her to get comfortable to sleep but once she drifted off she slept like a baby.

This morning she was up early and complaining of pain but just wanted "her" tylenol - not the dr's special tylenol. You cannot put one past her!
We went out for a brief time this afternoon and she went right back to her pajamas when we returned home. She is resting because she wants to feel good for Emily's birthday party tomorrow afternoon. Everyone she encounters gets to see her new port - she pulls her shirt back and proudly shows it off. I am glad she is not angry and upset from the surgery or the pain. When she came out I felt terrible because she just looked so bad. Her rash was so red in places and it stood out so much against her pale skin. Then when she was so much weaker last night and today I was starting to feel bad. It was time though and she needed that PICC line out so she could have more mobility from her arm. No second thoughts for Madeleine - she is very pleased.

We are also relieved that the kidney specialist will be seeing her on Monday. Our doctor is still on vacation but one of the fellows called over and spoke to him and arranged it. He already has her lab reports and they said just to be there Monday at 1:00 Monday. That takes a load off my mind also. I want to get to the bottom of anything going on with her kidneys pronto. She has had kidney issues come up before and I look forward to talking to the specialist. That is so much better than waiting until the end of November like they first told me.
Since we are going to be at Children's on Monday we switched her solumedrol to Tuesday, Wednesday, and Thursday. It's always something!

That is about it from here tonight. Madeleine is falling easily so we are trying to keep an eye on that. She fell on the stairs the other night and I just knew she had fractured her leg. It seems ok and she ended up with a big knot and some bruising.

Since FSN is messed up and we have not been able to watch the Stars game I had to call mom and Andrew to see what was happening. Leave it to the NHL to send ref's that always call bad games in Dallas to send them when the Red Wings are here. We will have to watch the hurricane coverage instead of hockey. We all have friends and family in the Houston and coastal areas and I am hoping everyone is somewhere safe tonight. It is heartbreaking to think about the damage we may wake up to tomorrow morning.

New photos and MMQ's soon!

All our love,
Connie and Madeleine

Tuesday, September 13, 2005 10:17 PM CDT

Are you ready for an entire week of updates all in one? Hurry up, get a Diet Pepsi and make sure your chair is comfortable. If you were here the drinks would be on me!

Madeleine got her solumedrol and IVIG last week at the hospital. The doctor seemed a bit concerned that she has so much rash coming back. Where her fingers were totally healed back in May they are very inflamed and red around the nails again. Her cheeks are red and she has streaks of red under her eyes. All of this is typical of skin involvement from the disease. She is staying about the same in muscle strength - tiring easy and weak legs.
The doctor wants to continue on with giving her solumedrol every 3 weeks and IVIG every 4.
We were just settled into our room when they came back for a 2nd urine sample. She had blood in her urine and they wanted to see if that was a fluke. Later that night we turned in another sample and it came back the same. They sent us home with a big orange jug on Friday morning to do a 24 hour urine collection that we took back on Saturday afternoon.
Madeleine was so happy when we were done with that! She did enjoy taking each of her brothers out to the garage refrigerator separately. "Look at that orange jug in the back! Do you know what that is??" When we heard the shouting from the garage we knew she must have told them. They won't even take a soda from there for 6 months I bet!

I did not get to speak with anyone about the results from the 24 hour urine until today. They were looking at creatinine clearance and things like that. I still wanted to know what the heck is up with the blood in her urine. When I talked to the nurse in our clinic she said Dr. P wants her to see a renal specialist to check things out. I am working on an appointment for that - if anyone has suggestions of a good renal doctor in the Dallas area drop me a note please. It is overwhelming to think of adding another doctor...I think of it as too many cooks in the kitchen maybe. I am not a patient person and I want ONE STOP SHOPPING!

Anyway, she was very tired at the hospital and really did not want to play much. She did not want to do activities with the volunteers at night and that is something she usually looks forward to doing. One of the pharmacists was telling me how hard it is for some patients to locate IVIG. Our pharmacy has been great so far and we have been covered each time she has needed it. If you are able - please give blood. IVIG is a blood product and with the recent hurricane the blood supplies are low. You could be helping countless people by donating.

Madeleine had different food cravings that usual too. She sent Terry to El Fenix for queso and tortillas on Wed then she sent my mom there on Thursday. We were living it up!

During the day on Thursday she was feeling bad so we filled the big bath tub up with bubbles and she floated around in there. All I could see was her hair and little arm wrapped in plastic bobbing around in the mounds of foam. She managed to keep her arm dry and had a good time in the warm water. I wish I had a tub like it at home - you can program the water temp you want and it has car wash sprayers. That is what Madeleine calls them! We used those to rinse the soapy bubbles off when she was done.

She did spend some time on Thursday learning about biofeedback. That was very cool and she could make her sun rise and set on the computer screen. It was interesting and Madeleine just about fell asleep. Next time we are going to do it in her hospital room so she can go to sleep if she wants. I know I do!

When we left the hospital on Friday morning it was time for a dressing change so we stopped in at Y Medical. We celebrated her next to the last dressing change! The girl gets her port on the 22nd so she is counting down flushes and dressing changes. She is so excited and thinking about swimming.

Next stop - home! I had folded myself in half to sleep with Madeleine in her bed the last two nights and my back was aching. Madeleine was tired but in a "mood". We were just a couple of miles from home when she announced that she did not want her usual Taco Grill rice. Nope, she wanted me to make chicken and dumplings. I knew without even looking...it meant I would have to go to the store. Nooooo!
Andrew was at school, Terry was at work and I was unshowered and downright beat.
I went straight for the kitchen when we got home and there was nothing I needed to make it.
She would not be swayed so we made a deal. I was not going to get anything else....OK, one small toy but NOTHING else!

I have to stop here and ask - have you ever read If You Give A Mouse A Cookie? Or If You Give A Pig A Pancake? How about If You Give A Moose A Muffin? If you have read any of those books or any of the others by that author then you know where I am going with this.
I lived - If You Take Madeleine To The Store.

I unloaded the car and put her back in. We are not getting anything else - stuff for chicken and dumplings, right? Yes, and ONE small toy. I was just about to turn into the grocery store and she says "You can't go here!" Why not? "This store is not kidlicious! I want to go to Target!"
She was worn out from all the drugs and looked like a ragdoll. I felt like a ragdoll and looked worse! In no mood to argue with her I went into Target. One small toy, right?
"Yes, mom. I heard you."
If you take Madeleine to Target to get one small toy she will not want to walk. I had to carry her. When her legs hurt she cannot sit on the seat in the shopping carts either.
First stop was toys. She looked at everything while I tried to be patient. It had been a rough week for her and she felt bad so I did not mind something small. There was a baby doll she liked but then she saw a whole nursery set with furniture - NO! I said something small! She was not happy. Doll sized is small!
She finally decided that she wanted a baby doll instead of Polly stuff - we were getting somewhere! We looked at all the dolls and....she wanted twins. Done - let's get out of here!
But wait! They need......Nooooo!
We made it out of Target with the new twins, a load of snacks, cookies, and the stuff for chicken and dumplings. We were getting into the car with our load and she said she was hungry. Too hungry to wait for me to cook and could we please stop at Chicken Express.
All she wanted was a small order of fries -- please!! How could I say no? The steroids make her so hungry and I was trying to do everything to avoid a meltdown.
When I placed her order for small fries at the drive thru she spoke up from the back seat "Can you tell them I want a small mashed potatoes too? Small fries and a small mashed potatoes with no gravy." If you take Madeleine To Get A Small Order Of Fries...
I told the man to add the mashed when she asks for a couple of chicken strips too...
The man had to be rolling his eyes at me because our order kept changing and growing.
When we pulled out of there I went home - no more stops!
Never again! I have said it before but this time I mean it! I am not taking her to Target or any other place when she is jacked up on steroids like that.

That is really the short version of recent events.
We did get to see March Of The Penguins. Madeleine told me she gives is one half a poodle and make it the back side! So that is a one poodle's tail rating...is she tough or what?
When the little eggs or baby penguins died she just about wigged out. She would glare at me and stage whisper that she was ready to GO! Then when this large bird was swooping in to grab a baby penguin she was shouting for the babies to run! Run to your mommies!!
It was a beautiful movie and I liked it fine....the girl did not.

Since MMQ's would not do this one story justice I am going to have to bore you with the entire story!
Since Madeleine was up and down last night with pain we have been a bit on edge today.
This evening I was making her a hot dog and she had been having some "issues" with Andrew. She would just burst out screaming when he would enter the same room. He and I had just walked out of the kitchen when she ran up to us. I held out her plate with her hot dog and she went nuts screaming. Andrew screamed back and things got a little bit crazy. She grabbed him by the leg and leaned in to bite his thigh. I put down the hot dog and removed her from his leg and let her know that I would not allow biting. Just as I pulled her off he fell to the floor and curled into a fetal positing rocking back and forth. He kept screaming like he was in pain but I knew he was laughing. I was trying not to laugh and hoo boy did she get mad! She ran to her room and slammed the door. Oh! I forgot to mention that Andrew had been holding a plate with 2 hamburgers on it and he tossed them into the air when she went in for the bite. Andrew is around 6' 3" I think and it was hysterical to see him toss the burgers and fall to the floor. I think I am overtired and overstressed and if I did not laugh at this I would certainly cry.
It did not end though. I still did not know what was wrong with the hot dog and she was still in her room. Andrew went to his room to get away from all of us but was not gone for long. He came right back in where I was and told me that I needed to go set her straight!
He said that Madeleine was in her room praying out loud and I needed to get in there and "take care of it!". She was praying that her family would realize how mean they are to her and stop. What?? All I did was make a hot dog and tell her not to bite her brother!
Andrew went back to his room saying something about starting a letter to Santa.

When she came out of her room about 30 minutes later I asked if she was ready to eat her hot dog. "No, it's old and the ketchup is all wrong."
How can the ketchup be wrong?? "It was not straight!"
I started praying out loud for my sanity and she was not amused.

Tonight Bri's mom Kim phoned me and she said that the clinic called her and Bri has blood in her urine too. I wonder if it is the steroids? Hopefully we can get in to see someone soon because I am very concerned.

Tomorrow it's more physical therapy and then I am going to make her rest and do school work.

I want to send a shout out to my mom tonight. She is in Indianapolis for a business meeting and called this afternoon to gripe at me about not doing an update yet. There, I did it!
Now I am going to go have a Diet Pepsi and enjoy the quiet while I can.

All our love,
Connie and Madeleine

Tuesday, September 6, 2005 8:57 PM CDT

I sure feel way too young to have a 17 year old child! HAPPY BIRTHDAY to Andrew!!
We had a small party to celebrate tonight and now everyone is getting settled in for the night.
William is studying for a quiz and Andrew is doing homework. Madeleine has been extremely crabby and is finally in bed!
The past week was a typical week before treatment. She has been tired and easily upset. The mood swings are way too much fun (not) and keep us all on our toes. When she is good, she is great - when she is not good, she is REALLY not good. Our PT at Baylor said she needs custom orthotics that are not just a piece of inner sole cut and shoved into her shoe. She phoned our doc's and they told her they cannot take recommendations from an outside facility. GRRR! They are the ones that sent us to them!! Things like this drive me insane and I have no patience for it. How can you send someone to another provider and then not do what they say will help? They are going to have to find me an anger management specialist soon!

Today Madeleine got her solumedrol infusion over at Y Medical and she will get the next two tomorrow and Thurs. at TSRH. She has clinic in the morning and then checks in for the rest of her solumedrol and for IVIG. We also have an appointment for her to try biofeedback this week - Madeleine has been excited about giving it a try.

Other than the wild mood swings we really had a fairly quiet week. She saw Dr. Renard, the surgeon that will put in her port, on Wednesday. They are supposed to be calling me to schedule the surgery but we have not heard back from them yet. It was a typical Madeleine moment when we were in the exam room. When Dr. R came in she looked at me and whispered "I am NOT getting a port!" then she kept telling me that over and over. "I changed my mind. I do NOT want a port!" We just ignored her and kept talking to the doctor. By the time we were back in the car and on the way home she was over it and ready to get her port. Now we just need the appointment...

The days seem to all be the same lately. I hate to admit it but I worry all the time that we will stay in this routine forever. Being positive does not come easy lately. Hopefully next week Madeleine will be feeling better and that will make me feel much better too.

Let's end this on a happy note with some MMQ's hand picked from the past week:

"Mom! Tell Granny to just get me 25 Happy Meals a day until I win!"
Damn those commercials! McDonald's has a new promo and you have a chance to win a trip to Disney in each Happy Meal. Every time she opens one of the package she screams "I won! I won!" before the plastic is torn open. FYI - we are not getting the 25 a day.

"That song sounds so 1970's"

"What does extenuating mean?"

"OK, I'm ready for bed...actually no, I'm never going to bed. KIDS RULE!"
ugh...

She completed her 11th day of kindergarten and is doing great! You should hear her recite A Time To Rise by Robert Louis Stephenson! It is so sweet and she is so big when she does it.

I will update with a report from clinic asap - I promise!
All our love,
Connie and Madeleine

Sunday, August 28, 2005 9:45 PM CDT

We have had a super busy week! So, once again this will be a week in review type entry.
Back on Monday Madeleine had a DEXA scan at Children's. Mary there does it and she is an absolute sweetheart! Brianna had hers the week before and Kim and raved about how wonderful Mary is and we liked her very much too. OK, a DEXA scan means dual energy x-ray absorptiometry. I did my homework. :) It was done with her laying on a table watching TV - all she had to do was be still. She said it was a piece of cake! My mom and I were right there with her and it was very interesting to see the images of her lumbar spine on the screen. Mary explained to us what we were seeing and it was not great at all. What this scan does, is that two x-rays of different energy levels measure the bone mineral density and then the computer predicts risk of fracture. Madeleine is at risk of fracture and it was worse than I thought it would be. I knew that she would have some bone density loss because of all the solumedrol and oral prednisone - but I guess I did not want to think the worst. Mary cautioned us to keep her from jumping off or down from anything. When we saw her PT she confirmed that we need to be careful and tumbling is OUT. Madeleine had been so excited about getting her line out so that she would be able to tumble. yike!
The docs called in a liquid calcium that she started taking and we are going to discuss it more when we go to our next appointment. The calcium chews are out because she does not have the strength in her jaws to chew them. We have tried and she spits them into the trash every time. She was not thrilled with the taste of the liquid calcium but I hinted around that we could probably find other ways to get it in her and she gave me a glare and gulped it down. I know, I know, I am the most hateful old woman she ever knew.....been there heard that.

We did meet the girls that will be doing her PT, OT and aquatic therapy. They were all so nice and it was so easy to run over to Waxahachie instead of driving to Dallas. If anyone is ever out in that area and wants to meet up for lunch sometime drop me a line. We are going to be over there twice a week for a while.

This week was definitely one big meltdown after another. When I spoke to my friends that also deal with JDM they were on the meltdown treadmill too. What the heck was going on this week? Was it a full moon or something? One minute everything is good and we are all feeling the love and then it all changes! Before Little Willie can shake his tail twice Madeleine will be a complete train wreck and then rush into her room sobbing. This week she used "..you just WANT me to run away!!". No, I want to run away!! I did not say that but I sure thought it plenty. Then half an hour later I am back to being her best buddy. It's hard to know if I am in or out at any given time!!

Thank you for all the wonderful messages this week. We did go to my Aunt Mary's funeral on Sunday. It was very nice and we enjoyed seeing family that we seldom see. My cousin Mikey never changes and it is always fun to see him. Mom and I went and took Madeleine and William. My Aunt Pat and Uncle Gerry met us at the funeral home and we all sat together. The service was nice and the kids behaved beautifully. I am so proud of William - he is such a young man when it comes to situations like that. Madeleine was very big too but very tired by the time it was over. We went back to my Aunt Pat's house so she could rest some before the drive back home. Pat has 6 kittens and they are so cute! Madeleine had a great time playing with them and fussing over them. She knew all the names and as we were leaving she was shouting good-bye to each one. They were running up to my mom's car with little tails straight into the air - it was like they were wanting to ask where their new playmate was going. It was so much fun!

Hey Shannon! If you are reading - it was great to see you! We will have to get together soon.

Nintendogs came out this week so William and Madeleine both have new "dogs" they are raising. It is as much work as real life dogs! They even make you pick up the poop if they go while you are walking them. In any event Nintendogs gets the prestigious Five Poodles Award of Excellence from Madeleine. She thinks this is the best game since Wario Ware Touched and The 'Urbs came out.
Little Willie gives it nothing and would like to get his paws on it. He is a bit put off that his mistress is spending so much time talking to the faux dog when the real one is usually at her side!

Tonight's installment of MMQ's:

"I will be 32 by the time you finally get one"
I had been looking at trading my truck in this week and anything she was that THE one for us. Then when we did not buy that one she would be mad and convinced that I would never find one she liked.

I was told this story on Sunday night when I was getting Madeleine ready for bed. I was really tired and quiet so I guess she thought she should cheer me up.
"You know your Aunt is in a better place now. It is a very special place with a large beautiful garden. In this garden is a big tree called The Tree of Life and it is filled with loads of fruit....HEALTHY fruit. It only has healthy fruits and every month it changes and has a different fruit. She will eat lots of healthy fruits and she will feel so much better and not be sick any longer. It will all be OK."
During this story I was speechless. I am not sure where she got her information about this fruit of the month tree that lives in heaven but it sounds pretty good to me.
If she does not be a Child Life Specialist maybe she can be a writer? I have no clue where she comes up with some of the stuff she tells me.

Then there is all the information she gets from commercials. Commercials are a big pain for me these days. Every day she points out new items me MUST get!
"But wait MOM - there's more!!"
"Isn't that amazing?? We really need that and all you have to do is call and they will send it."

"Ooooh! Mom! They are just so cute! We have to get a couple of those! Please!"
When we were at a Dr appointment on Wed a couple came in with 1 month old twins. Yes, they were very cute...but, NO I will not go out and "get a couple" of them.
She figured out a compromise though....we can adopt a "couple" after she is a teenager. ha ha ha ha! Uh, no.

I am heading out to watch the news and just enjoy some quiet time. Our thoughts are with everyone in the path of Katrina tonight. Everyone stay safe and please don't take any chances. Madeleine was watching come of the coverage with me and she was really affected by the story of a woman and her 3 yr old daughter. They were in Houma, LA and will be riding it out in a shrimp boat. Madeleine worried over how scared the little girl would be during the storm. I hope they are safe tonight.

All our love,
Connie and Madeleine

Saturday, August 20, 2005 9:53 PM CDT

Before we talk about Madeleine tonight I have some sad news. My Aunt Mary Ellen died yesterday after a very long and hard battle with cancer. She put up a brave fight and is no longer suffering. Her funeral will be tomorrow and hopefully Madeleine will be doing well so I can go.

Back to Madeleine news -
Have I mentioned lately how I love steroids?
UGH
Monday, Tuesday and Wednesday we went over to Y Medical for Madeleine to get her solumedrol. Our nurse was able to run it over 3 hours since she was premedicated with benadryl. That slows her down and she sits there looking stoned. On Wednesday her blood pressure was up so they had to do it at 4 hours even with the benadryl first.
She was a happy camper most of the time because it was solumedrol week for her friend Emily too. They came up and the girls got their medicine together and played. Madeleine enjoyed having her there and was sad each day when it was time to part. They had made Shrinky Dinks, played Polly's, and all sorts of fun things.
Thanks Julie for sharing your week with us - are you sure you don't want to join us again in 3 weeks? Just kidding! Emily is doing well and will be graduating from every 4 weeks to every 6 weeks soon. WTG Emily!! Keep up the good work!

Monday when we left Y Medical to head home she had a big 'ole meltdown that lasted into the evening. She kept going into her room and sitting in bed screaming. Of course, this was all my fault...but you already knew that, right?

" You don't loooooooveee me!! You are sooooooo meannnnnnnn"
"You are the most hateful mother in the wooooorrllldddd!" That one is always my favorite...not. When she starts that I try and filter it out. It's not easy to ignore but I have to keep chanting "..it's not her..it's the drugs...it's the #*$(*#&($*#ing drugs..."

She has really felt run down and was up in the night each night until Thursday night. Terry and I were half awake all night waiting on her to call out. When she finally sleeps then we can't! I give up!

Tuesday night was orientation for William's school. He had decided to go to Josh's house since Madeleine was screaming...a lot. They called and reminded me Tuesday afternoon and I think I was asleep when the phone rang because it startled me and I was drooling.
When I hung up promising to be there I noticed Madeleine glaring at me. She was not going to be left home while I went anywhere! I made her promise that she would not embarass William and then we took her along. His school is so nice and the orientation was short and sweet - just the way we hoped! The girl was perfect and enjoyed visiting with friends there. When William's teacher asked her if William was a good big brother she gave her a big smile and nodded. I should send her to acting classes!! It would have been nice if William could have seen it but he was off with his friends. He is ready for 6th grade on Monday.

On Wednesday when things were on edge I called Terry and had him make a Taco Grill run. He knocked on the window and they sold him a container of rice to rush over for Madeleine. I am so glad they did! She was happy to get it and then dispatched me over to Mc Donald's.
FYI - if you ask them at Mickey D's they will make you fries without salt. They will wipe out the bin and make a fresh batch of fries. That means they are fresh and crisp too.
Madeleine does not seem to ever notice and that way I am not adding to her blood pressure woes.

We had a standoff on Wednesday when it was time to leave Y Medical. Terry and I had her all loaded up and we were ready to head out when she wanted a DVD. OK, I can do that.
But....what DVD? "I don't know - I just want to watch a DVD!!" That is how it starts. I tried listing off the ones I had with us. no no no NO!! Then I tried just putting in a DVD of my choice. NOOOoooo! At this point I closed up the DVD player and pulled out of the parking lot with her screaming. We could have sat there for days without her being able to make up her mind. Please, gentle readers, before you pass judgement on me for ignoring her need for the perfect DVD remember a few things. She had been given 1350 ml of solumedrol over the last 3 days. On top of that she had her methotrexate injection Wednesday morning too. There would not have been a DVD she wanted to watch even if it had been custom made for her. Did I mention how much I love steroids? They make children so pleasant to be around.

Thursday was a day of rest...for me and Madeleine. We stayed around the house and did lots of resting. She still had her moments of crying but her sleeping all night Thursday was a gift from heaven.

We rec'd her school materials and she has started that. So far she has completed her 3rd day of kindergarten - how cool is that? She loves her teacher (Mrs. Bere) and stays glued to the DVD singing along and answering questions. I think we are going to like this!

How about a couple of MMQ's before I take advantage of the quiet here at Camp Chaos?

"Oh please, I already know how to count. When I was in your tummy years ago I would count my fingers and toes."

"Come ON! It does not get any greener - move it!"
I'm going - ok ok!
"Not you mom, I am talking to that guy in front of you."

I know I had something else to report in on but my memory sucks tonight. I blame it on steroids!

Madeleine has a dexa scan Monday at Children's in Dallas. Please be sending her strong bone vibes - we need to see strong bones!

All our love,
Connie and Madeleine

Saturday, August 13, 2005 10:12 PM CDT

Where has the week gone?!

We just got back home from spending the evening over in Dallas with a very special group of folks. We had a Cure JM Family Support cookout and there were 35 people there! I am so thrilled at what a great turn out. It was so nice to meet some new families and spend time getting to know each other. The kids were adorable together and had a blast playing!
We all missed our friends that could not be with us tonight - maybe next time!

I guess I need to back up and start with Monday. We had clinic and then Madeleine was admitted for IVIG. It was awesome to see Dr. Punaro since we had not seen her the last few visits. She agreed that we must work on Madeleine's pain issues more - no drugs stronger than tylenol, motrin, advil etc but she had other ideas. We are going to work with a massage therapist that has experience with the type of pain Madeleine has. Also she is adding PT and OT a couple of times a week for the next 6 months. The biggest news of the visit was that she wrote orders for Madeleine to get a port placed so that she can get aquatic therapy and go swimming!! Madeleine was all over that and has been celebrating! She would be ready for the surgery NOW if it could be done. We made the appointment to see the surgeon over at Children's on 8/31 and hopefully it will not take long to get her on the schedule for the procedure. I have never seen a child in such a hurry to have surgery. :)
So, our plan is to continue getting solumedrol infusions 3 days a week every 3 weeks. She continues to get IVIG once a month and we add PT and OT twice a week. After her port is in she can start aquatic therapy - I have a feeling we are going to be fairly busy!
I am already tired just typing it all...but, we can do this!

We ordered the kindergarten program from A Beka Academy this week. They have a DVD course for home schooling and we are going to give that a go. Since our schedule is already filling up with appointments I cannot imagine squeezing in school. Madeleine is thrilled and cannot wait for the materials to arrive so she can get going. She had issues with us ordering the kindergarten program though -
"Come on Mom, why don't you get me one of the high school programs?"
No.
"Well, then why not 7th or 8th grade?"
No.
"Alright, I will do this kindergarten if I have to. But then you are going to hurry up and get the next grade ordered because I don't want to have to wait!"
Uh......

Madeleine was pretty worn out from her IVIG this week and we took it easy after she was discharged Wednesday morning. She has been doing her usual - playing in my bed and it has been involving water more often than not. I hope that she can get her water fix once she can swim again. Then I won't have to dry my bed out daily! On Thursday she spread her blankets on my bed and had an all out tea party. The kind with her tea set, lots of water (tea) and oyster crackers. It was her and three stuffed friends and all of them had to have bowls and cups of water...I mean tea and plates of oyster crackers. That meant more spilled water mixed with cracker crumbs in my bed. Little Willie gorged on the little plates of crackers when she was not looking and then she would fill them again. ugh!

That is pretty much the short version of the news. If you are still with me I will close with our most popular segment - MMQ's:

"I don't make monkeys, I feed them."
She has been watching way too much PeeWee Herman.

"Mom?"
Yes, Madeleine.
"I have decided that tomorrow is going to be daughters day."
What exactly does that mean?
"It means that all daughters can just lay around and do anything they want all day."
Well, what if I want a mothers day?
"Sheesh, are you kidding? You don't get another one of those until NEXT year!"

You know how she loves commercials, right? I am sure you have seen the one for the Betty Crocker bake and fill pan? Madeleine is very fond of that particular spot and everything stops when it comes on.
"Hurry! If you call now they will even send you something extra! How can you not DO THIS?? I need you to get this ordered because when I am taking my 5th year of dance I want you to make me a cake in it. It needs to be pink with pink filling and some pink decorations on it."
I have tried to explain that she is starting her 3rd year of dance and we have plenty of time. Needless to say she does not agree with me...what else is new.

School starts Monday for Andrew. He is going to be a junior - I cannot even begin to figure out when this happened? How can he be that old?
William still has a week before he goes back. That means he can spend some quality time with Madeleine while she gets her infusions this next week. ha ha ha ha ha

More soon!
All our love,
Connie and Madeleine

Sunday, August 7, 2005 9:47 PM CDT

We have had a pretty quiet week. Madeleine feels about the same with frequent complaints of pain. She goes to bed each night with her legs wrapped in her heat wrap and with a dose of tylenol. I am worried about how she is now complaining with her hips hurting.
Her rash is coming back on her face in red splotches and her eyelids have looked like she is wearing purple eyeshadow.
She has been playing lots of Polly's while resting in my bed. We had to make an emergency run to Target one evening when she was in the middle of a full blown steroid meltdown. They showed a new Polly toy on a commercial and she had been in the middle of one of "those" days where she feels bad and nothing we do seems to help. So, I run to Target and thankfully they had the darn toy. If you have kids that watch Nickelodeon then you have seen it...the new Polly toy that you fill with WATER. Why does it have to be water? How do you tell this child who feels like crap that she cannot play with this toy in your bed? When I tried she burst into tears and I gave in...it was not worth it. I just try and get her to play on Terry's side. ;)

On Monday we had a real treat. We went to Emily and Julie's house for a playdate. Emily has the same disease and they had so much fun playing. Madeleine is in love with Jake, Emily's little brother! He is adorable and one of the sweetest little boys you will ever meet.
They had a picnic lunch on the livingroom floor and did not stop chattering the whole time. Madeleine was not happy when it was time to leave but they were all tired. When we got home she put on her nightgown and stayed in my bed the rest of the day.

Tuesday was the last class for the summer term of dance. Timing is perfect since Fall classes start again a week from this Wednesday. See you soon Mr. Richard and Miss Jane!
When we left class on Tuesday Madeleine put her nightgown on and called it a day. She does not seem to be gaining any stamina.

In other news it has been pretty stressful watching the NHL players scatter from team to team. Thank goodness the Stars finally signed Modano! Andrew was torturing Madeleine with that one. Andrew: "Pssst Madeleine, Mike Modano is going to go play in Boston..."
Madeleine: "NOOOOoooooo!!!!!!"
Since I have not had much time to keep an eye on all this it is a good thing I have Andrew. He has made sure and alerted me to all breaking hockey news as well as all the player signings around the league.
That reminds me of something else that happened this past week!
Madeleine and I decided to go over to one of the rail stations and ride the train into Dallas on Thursday. I guilted Andrew into going with us and at the last minute he agreed to go. William went with my mom on a business trip so he missed out on this fun family adventure. ha ha ha
We went to the Centrepoint Station by DFW airport and I bought tickets from the machine. Andrew waited in the truck with Madeleine and when I got back in he told me I had lost my mind and he would wait for us there. I guess he was a bit wigged out by the handful of passengers that were waiting...one was a female (?) that appeared to be turning tricks. Hoo boy.
It was too late to back out and the train was coming and Madeleine was going on it! We loaded up and Andrew took a seat in front of us. I think he was trying to pretend he did not know us but that is tough with your little sister hanging over the seat squealing at you.
It was uneventful from there and the trip was nice into downtown Dallas and then back again. You could say it was almost boring since the hooker did not board the train - she had left with a customer before we pulled out.

The fun started after we were almost home. The weather turned nasty and it was the sort of storms with lots of heavy lightning. When we pulled into the driveway I pressed the button for the garage to open....nothing. The power had been knocked out by the storm. Since only 3 houses were out (ours and two neighbors) it was not a priority for TXU to come fix it. Lightning had hit the pole at the edge of our backyard - I am so glad it was not the house.
I phoned Terry at work and he called TXU and they said that it would be back up by around 7pm. ugh!! We could not get into our house without going through the garage...I know it's stupid but that is just how it was. Andrew got out of my truck and into his own car and he told us we were on our own. Madeleine was wailing about her baby (Little Willie) being trapped in the house. "He is going to starve to death!!"
I promise that Little Willie did not miss a meal that day.
After dinner at IHOP and riding around town some it was almost 7 and no one had showed up to fix the power. I called TXU and was told 1 AM!! This is where I started wailing.
I called Terry at work and he had to come home and get me in the house or I was going to get in and it would not be pretty. He came home and kicked the back door in. Willie was so happy to see us that he would not stop jumping. Even the cats seemed happy to see us!
It was not terribly hot but it was dark. We put Madeleine to sleep on the sofa and I laid down with her. Terry had to be up early for work so he grabbed a sleeping bag and laid down beside the sofa to help me keep the pets off Madeleine. You see, Willie had not been able to play ball all day since we had been gone and then locked out. He had a lot of ball playing to be made up for! He would drop his soggy tennis ball on Madeleine for her to throw so we had to be quick and grab it or he would drop it and bark.
Just before 1 Andrew rushed out of his room - I swear that boy had been watching for the repair crew! He was doing a happy dance around the livingroom. It only took a few minutes and we had power! Everyone celebrated by tucking Madeleine into her own bed and we all crashed.
Next time we have a power outtage we will have a way to get in the house without breaking in!

Tomorrow morning is clinic and then she checks in for IVIG.
I am beat so here is a MMQ before I am off to bed:

"Mom, you need to get busy and plan a trip for us...we need to go somewhere."
We need to what?
"You know! Just take us to Hawaii or something because I want to go somewhere...ok?"

All our love,
Connie and Madeleine

Friday, July 29, 2005 8:55 PM CDT

Where has the summer gone? School will be starting soon (yay! oops, did I say that?) and there is still so much to get done!

On Monday Madeleine had her MRI and I feel like it did not give us much information. I asked the Dr before they started if we could do her legs and he said no. They only wanted the pelvis. I told him that was not where her pain is and we went back and forth until he finally won. I was not thrilled and I am still not convinced that it shouldn't have been done while we already had her in the machine - what was it going to hurt?? The pelvic muscles did not show any inflammation - to that I repeat...that is NOT where she is complaining of the pain. The Dr was one of the fellows since the other Drs were all at camp this past week. We will discuss everything on the 8th at our next appt. I had been so sure that they were going to scan the areas where she is having trouble.

For the MRI she had some nembutal and versed through her line. This was the same as they used before and she had come out of it in a great mood with no problems. Not this time! First she started stirring before they started so they gave her more versed and that worked - she was out cold. When it was over I picked her up from the machine and she was not a happy camper. She wanted Cinda and she had stepped out while Madeleine was asleep. We called Cinda and she came back and held Madeleine for a little while. She was very woozy but would not go back to sleep. We gave her water and jello that she sucked down quickly and asked for more. She was so angry and could not settle down. It was upsetting when she could not focus on the TV - there were too many TVs. Then we all had too many eyes, noses and mouths. Since she was drinking and awake they let me go ahead and take her out. We put her in the wagon and went out to the atrium to see Kim and Brianna for a few minutes. Andrew and I were having an awful time keeping Madeleine from falling and she was determined to walk around. We had to get to Y Medical and get her solumedrol so our visit was way too short. I picked Madeleine up because she kept crawling out of the wagon and she went a little nuts on me. All the way out the door and into the parking garage she told me off. "You are the most hateful mother in the whole world!! I hate youuuuuu! Get off me!! Don't touch me - let me goooooo! You are so mean!!"
Andrew told me to never ask him to come along for something like that again. He was so embarassed at her screaming fit. Oh! Along with the screaming she was hitting me over the head and kicking me since I was carrying her to the truck.
I put her in as quickly as I could and shut the doors fast. It would not have surprised me if the police had not pulled up and hauled me off for being a "..hateful and mean mother...".
Those drugs did not do this to her before but she sure had some interesting side effects this time. I ran through a drive thru and got food on the way to Y Medical. When we got there our wonderful nurse had the medicine ready to start. Madeleine had stopped yelling after we put food in front of her and as long as Andrew and I did not look at her we were OK. The Dr had ordered a push of benadryl before the solumedrol so that combined with all the other drugs that day knocked her out again. We just sat there enjoying the silence while Madeleine sobbed in her sleep for a little while. Then Andrew and I played cards for the almost 4 hours her medicine was running. We were so careful not to make a peep but it's hard not to laugh when you are trying that hard. The dumbest things set us off and then Andrew had the loudest hiccups. It was good to laugh after our hellish morning.
We had to wake her up to leave and she was in a daze until we were on the way home. She had to have Christmas cookies and nothing was going to stop her from getting them. You all know how I have this incredible amount of patience, right?
I told her that we would go home and make Christmas cookies. NO, that would not do. We had to stop and get them now. Well, we all know that this is July and there are no Christmas cookies in the stores. It was impossible to reason with her after the cocktail of meds that she had been given. I pulled into a Kroger and told her that she could wait with Andrew while I ran into the store and get her some kind of cookies....see, I'm no dummy. I knew better than to take her in the store, right? Uh, no. She was not having that at all, she was coming in. Andrew told me he would wait in the truck and I called him a chicken.
She hit the store and started grabbing everything she could reach from the cart. She was too tired and weak to walk but she could grab!
From there we went home with no more stops. She spent the rest of the day in my bed but was up in the night crying in pain. Gee, I wonder why her legs are hurting?
The next 2 days of pulsing went fairly smoothly. With the addition of the benadryl in the beginning it kept her from getting so agitated during the infusions. She would doze off some and when we got home on Wednesday she actually slept for about 3 hours.
There have only been 2 bad nights this week when the tylenol did not seem to manage her pain. She has been spending lots of time with her legs and feet in her heat wrap.

I am pretty sure something exciting happened this week and I will remember it after I click the button to post this! So, let's just forget that part and go straight to the MMQ's:

"When they say there is 24 in the box they are not kidding. I just counted."

"Don't insult me by saying that."
When I told her that her hands were dirty and to go wash them.

"I don't know what I am going to do with my life...I mean I want to go to nursing school so can you work that out and get me signed up?"
When I found my voice I told her that we should probably get through kindergarten first.
"Well OK, but after that you need to get on with it and sign me up."

I need to add this up top but please take a peek at the Princess Madeleine page that a fan lovingly created for our girl. We think he did a beautiful job and we are so excited about it!
http://www.happytrailscarriage.com/princess.html

Late last night I was laying in bed watching TV and I started thinking...scary, eh?
There was Terry quietly snoring beside me along with Hully, Little Willie and Lilo. For the longest time I kept looking at them and then it dawned on me. We have always tried to make everyone sleep in their OWN beds so that mom can sleep too and although it does not always happen we still try really hard to stick with it. Well, there in my bed was Andrew's cat (hully), William's cat (Lilo), and Madeleine's dog (Little Willie). I guess their pets sleeping with mom is the next best thing to being there? I don't know but I could not help but laugh at the three of them lined up there sleeping beside us.

All our love and g'night!
Connie & Madeleine

Sunday, July 24, 2005 9:49 PM CDT

"Ladies and gentlemen...boys and girls...WELCOME to the greatest little show on earth......MOM!! I need some mashed potatooooooes!"
This is an example of the sounds coming from the girl's room tonight. She is in bed but showing no signs of going to sleep -- argh! We have to be up very early so we can be in radiology by 7:45am. Emily called us on Friday to confirm and to see if Madeleine wanted to have sedation. As of tonight she is leaning towards the drugs - "It's too darn noisy in there!". We will see what she decides when it's time to get on the table.

Madeleine had been looking forward to today for weeks. It was circus day! Mom had bought tickets when they first went on sale and Madeleine and William were very excited. We had seen rave reviews from friends that went to see it over in Dallas so we could not wait. I mentioned to Beth that we were going and she had got tickets at the last minute. So, it was even better to be joined by Beth and Cleo at the last minute. We went early for the Three Ring Adventure before the show - I added photos above of Madeleine and Cleo checking out the costumes. Our seats were not together but Beth and Cleo were able to move to the row behind us for the second half of the show. We were so close that you felt like you could have reached out and touched the performers.
At the very beginning of the show they had some acrobats up in the rafters of the building and Madeleine was so nervous - "They need to get DOWN! Are they crazy? That is so dangerous." She was amazed by the chances they would take and I hope she was not taking any notes because was already fearless!
On the way back home she announced that she was going to be in the circus when she grows up. But, wait - there's more - she will be a child life specialist during the day and a circus performer at night.

You know I could go on for another hour or two but we have to be up early so I am going to get to bed. When we leave the hospital tomorrow we have to go straight to Y Medical (yes, Madeleine - I know. Medical Y) and get her solumedrol infusion. Will it be a long day or what? I am going to phone them when we are on the way so they can have everything ready there. Hopefully we can be in and out in less than 5 hours...

And now here is your latest installment of MMQ's:

"He gets stupid real easily"
Madeleine describing Andrew after a heated argument with him.

Imagine this -- I manage to get a rare break and have my hair done. As I sit there enjoying every minute of it and my cell phone rings. I answer and this calm little voice says:
"Dad and I are playing hide and seek and he keeps hiding in obvious places AND I DON'T LIKE IT!!"

"I'm 5 years old but my Game Boy is just one and it can't walk yet."

"I already have a poodle, now I want an owl"
After watching all 3 Harry Potter movies in one day.

"Can I have some cotton swabs and maybe some cotton balls?"
Sure, here just take all these and go play....
"OH! Cool!! Now, I'm almost a fully grown doctor and I'm only 5 years old! I am going to work on William with all this"

"I cannot help it if I am having a crisis for balloons"

"I always do that when you are not watching"
She had just attempted a cartwheel on my bed - with one arm because she does not want to loose her picc line.

Wish us luck tomorrow.
All our love,
Connie and Ringmistress Madeleine

Tuesday, July 19, 2005 9:49 PM CDT

Hello!
Things here at Camp Chaos are pretty much the same....never a dull moment.

We went to see Charlie and the Chocolate Factory with our running crew (as Madeleine calls them). That is Beth & Cleo and Julie & Emily along with Emily's darling little brother Jake. We even managed to get William, Josh and Andrew to go along with us. The only ones missing were Kim and Bri - we all missed you guys!! It was great fun and we loved the movie. Madeleine and I give it a coveted 5 - Poodle rating which is the highest one we award. We loved it so much that we took Terry to see it yesterday on his birthday.

On Friday night that awful red rash came back under Madeleine's left arm and down her side. It looked just like it did a couple of weeks ago and now has slowly faded. It looks like someone put a hot iron on her side when it comes up so red. She does not complain about it though unless you press on it.
She is laying around quite a bit still and she has stopped wanting to go play on her bike or scooter. The last time she got on her bike she had us push her around and she gave up quickly. If she is feeling good she drives us crazy about when it will be late enough for her to go out - we always wait until sundown.

On Sunday night she pulled an all nighter up with some of the worst pain she has had in awhile. She was crying and very upset until we could get some tylenol in her and her heat wrap around her legs. I phoned the clinic and they said I would get a call back today but I did not hear from them. I'm sure there is not much more they can do until after the MRI on Monday.

She did make it to dance class today and loved every minute of it. Miss Jane was sick - we hope it's just a cold and that she is back in action soon!! We missed you Miss Jane and we love you!! XXOO
After we got back home Madeleine went straight upstairs and changed into a nightgown and stayed in my bed just about the rest of the day. We was very needy and we watched movies and played a lot of card games.

I've been feeling kind of discouraged lately so I guess that is why I have not been very chatty. If I owe you an e-mail or phone call please be patient - I am going to catch up one day soon. When that stupid rash came back again it was very upsetting. It always seems if there is a slim chance of something with this disease then we should figure it's going to happen. She has a large raised red place on her hand tonight that I was noticing but she would not let me look at it. I hope it is just a ant bite or something like that.

The best of the MMQ's from the last few days are:

"You are freaking me out."
To Andrew

"Mom, you need to inhale slowly...then re-hale. That's it - inhale and now re-hale."
I was choking and she was taking care of me.

"STU!"
To Andrew, again. She was about to call him stupid but I glared at her. We can always tell when she is feeling bad because when she does she calls Andrew stupid a lot.

"I cannot wait to go to the circus because I am going to try out the high wire."
????
We are going to the circus this coming weekend but I pretty sure this won't happen.

Everyone stay cool!
All our love,
Connie and Madeleine

Thursday, July 14, 2005 10:03 PM CDT

What a busy day! Madeleine had eye clinic first thing this morning so we had to go back to Dallas for that. Everything still looks good with no effects so far from the disease or drugs. Yay!
We hit the Jr Volunteer Book sale after her appointment. They hold it every year and it raises the money for scholarships. You cannot beat the prices and Madeleine loaded up on Berenstain Bear books - they seem to be her latest thing.
From there we hit Y Medical to get a dressing change which was just a quick stop.
Then I insisted we go back home and rest some before going back to Dallas this evening. It was the last night for the Summer All Stars program and Madeleine had already told me she was NOT missing it. She had a great time and was sad for it to be over for this summer.
Tonight they played a new relay game and then finished up with Toilet Tag before we left. It was starting to look like rain so we headed back home.

It is great to see Madeleine feel like playing. When we were in clinic on Monday the physical therapist spoke to us about not "letting" her do so much. How do you make a 5 year old not play? She wants to jump and skip and play so much and when she has any energy she wants to use it up! We are supposed to encourage her to move around but not so much? I am not too sure how all that is supposed to work out...

We did not get to see Dr. Punaro again this week and I hope that on our next visit she will be there. Dr. Madson said that we cannot do much about her pain until we get the MRI done - it's scheduled for the 25th. After that we will figure out what direction to go in. She said there are other drugs that we can discuss but all that will have to wait until we have more information as to whether this is muscular or what. They also wrote orders for her to get a dexa scan and that will be done at Children's. I am eager to get that done since I have seen the stories of so many children with osteopenia. That is a reduction in bone volume to below normal levels.

...and now for the much anticipated.....MMQ's!

"This gum is getting on my nerves."
How can your gum be doing that?
"Because I cannot blow a bubble!"

"Here Mom take this abstract art I made. I am just soooo abstracting here."
She was doing an art project with the volunteers on Tuesday night that involved paint and a lot of salt. It got a little bit crazy!

"I'm not ready to get ready yet."
Last night when it was time to get ready for bed.

"The snake of technology is coming after you!"
This is one that I have no clue what it's about.

"You see, you have these rods and cones in your eyes and they make it so you can see light and other stuff..."
Part of the lecture she gave me about eyes after leaving the eye clinic. I was a bit too shocked to make sure I remembered all she told me. I do know that none of this was discussed during her appt. So, I do not know the source of her information.

"Hey! And -Baby you ready for a chatroom??"
She was asking Andrew if he wanted to do a chatroom with their Gameboy DSs.

We are making the best out of her feeling better while we can. Last year when we were tapering meds she would have some good days after IV meds and then start to decline again. One day I hope she does not have to be in pain after doing all the stuff she wants to do. I want her to play like a 5 year old without being in pain.

I hope everyone is having a great week!
All our love,
Connie & Madeleine

Wednesday, July 13, 2005 9:59 PM CDT

Just wanted to let you know that we are back home. She tolorated her IVIG well and had fun catching up with our friends at the hospital.

I had written a complete update and then something went very wrong when I copied and pasted and it is all gone. *#&$(#*^$&*#(!!!
We are beat and I need to get some stuff unpacked - I will rewrite it tomorrow. Promise!

We have some very good MMQ's to pass along but I am going to keep you hanging on those too - there are a couple of real doozeys!

All our love,
Connie and Madeleine

Sunday, July 10, 2005 9:04 PM CDT

Just a quick update tonight!
Tomorrow we have clinic and then she is checking in for IVIG. We should be home Wednesday morning.
We are trying to get the girl in bed and she keeps calling me from her phone to tell me she forgot something else she needs. One more time and I am going to have to take it away for the night....!!

We have had a pretty quiet weekend. She has bounced back a little bit from the solumedrol last week but she does not have much stamina at all. I keep finding her snuggled up in a blanket and wanting more tylenol. She will play and run around a little bit then be laying down and completely exhausted the next.

The bright red rash on her side has faded and the skin has been peeling. She says that it does not hurt any longer.

Here's a couple of MMQ's to hold you guys until later in the week:

"I didn't do it!!"
She was sound asleep and Terry had gone in her room to tuck her in.

"Please MOM! You are going to ruin my life if you don't go to get me McDonald's NOW!"
This was at the peak of her steroid feeding frenzy.

Thank you so much for checking in on our girl. We appreciate you!

All our love,
Connie & Madeleine

Thursday, July 7, 2005 10:05 PM CDT

As I type this my tiny steroid princess is sound asleep diagonally across my bed. She is wiped out - as she should be. We were up with her at 1:30 am this morning with her having pain down her legs and into her ankles. She needed her heat wrap and it had to reheated a couple of times through the night. We also had to make a few snacks, argue about having PBS Kids on the TV (bet you can't guess who won that battle), and finally over the light being on. This went on until after 4! At one point I sent Terry off to find another spot to sleep so he could work today. Then it was just the two of us glaring at each other as we sat in the bed.
We could not agree over the light issue. I would turn it off and leave the bathroom light on. She would wait until I was in bed and we were all settled and she would get up turn the light on and then turned the bathroom light off. Then she would sit back down with her arms crossed "HUH".
She had 2 doses of solumedrol under her belt and the last one was this morning...10 am this morning! I can just imagine what we looked like when we stumbled into Y Medical for her infusion. Thankfully they are always ready to get it rolling and it was not much more than 4 hours and we were on our way back home. She only hit the 140/80 cut off on blood pressure once but it came right back down without drugs.

When we got to Y Medical on Tuesday morning the nurses there confirmed that her rash was disease related. They had seen it on a few other JDM kids in the same places.
Today her heliotrope rash is really dark but it could be worse since she has been crying so much the last few days.

Tonight she sent me to the store for Funyuns and to Chicken "Depressed" (Express) for her dinner. She plowed through a plate of chicken strips, masked potatoes (no gravy!), and fries dipped in gravy. When she pushed her plate back she said she was ready for dessert...the Funyuns. She ate half a big bag! If I eat 10 the roof of my mouth gets raw!
Her belly is big and round under her nightgown. Thank the Lord that we have wonderful friends and loved ones with Prevacid connections because it is working overtime in that tummy tonight!
I forgot to mention that before dinner she had a slice of pepperoni pizza and a bowl of chicken with rice soup...
It is so rare for her to eat so much of anything. She eats all day long but just a bite or two of things - today it was all the way. I still wonder how she remains so tiny after all the freaking steroids.

Ah -freaking... that reminds me of a story from this past weekend. I was giving Willie a bath in the tub when Andrew brought one of the cats in to watch. She did not seem too bothered by it so I plopped her into the tub and gave her a wash. Before I was done there was Andrew with another cat waiting. That cat minded and started howling big time. We had Willie running all over the place sort of dried off and a wet cat that ran right to my bed to dry herself. It's always my bed.....UGH!
Willie got worried about "his" kitty that was howling and so he jumped back into the tub before I could grab him. He wanted to comfort the cat and that was not really comforting to the cat. Madeleine came into the bathroom and told was holding her ear screaming " you are a freaking cat!! Don't hurt my mother!" Then she realized it was her dog that was in the tub with the cat and she yelling "Don't hurt my poodle you freaking cat!!"
It was every man (or mom) for himself when the yelling started. I dried myself off and got out of the way. By then Madeleine was standing in the desk chair with all her stuff piled around her. The cats and dog were running around on my bed where all her stuff had been and she was in a panic over it all getting wet. She had only room for her little feet since she had so much junk piled in the chair!

Tuesday afternoon she played doctor again with her animals and ran tubing all over the place. I never seem to catch on to this stuff before there is water all over the place. "They all needed IV's and lots of fluids MOM!!"

I am pretty sure I had more to tell but I am just so tired. Since my editor is not home from work you yet will have to forgive me for anything that does not make sense. ;)
All our love,
Connie and sleepy Madeleine

Sunday, July 3, 2005 9:03 PM CDT

There really is never a dull moment here at Camp Chaos.
Yesterday I was changing Madeleine's shirt and found a large red area under her arm on her side. I spoke to one of our nurses and they were concerned that her PICC line could be infiltrated. No one told me that could happen! I flushed it and we got blood return so they said that ruled that out. **Whew!**
We took her in to Children's over in Dallas for the doctors there to take a look. It was not too crowded and they put her right into isolation away from the fevers and vomiting kiddos.
They drew a culture and did some xrays. The x-rays showed her line placement was fine.
It is not a contact rash or an allergic reaction. The ER docs wanted to give her antibiotics as a precaution but when they phoned the doctor on call from our clinic he told them no antibiotics. He said to give her benadryl for itching - no one said it was itching! grrrrrrr!
It is a large red area that does not itch. It has the same texture as the rest of her skin - it is not bumpy. It has the appearance of a burn in my opinion. Her dressing does not touch the area affected and it is covered in gauze. No new clothing, soaps etc.
Here is a photo

The doctors in the ER were wonderful. He said it is some sort of cellulitis that he felt is related to her disease. It is bothering her and painful if touched too much. I guess we will wait until Tuesday when our docs are back in the office to see what next. Today it is just as red as it was yesterday.
She was funny when we were waiting in our room. She wanted to see out the windows and kept wanting to know about where the Child Life playroom was and where were the Child Life Specialists. I told her to just work on her leads to the monitors and that kept her busy plugging and unplugging the colored wires.

On the way back from Dallas she was whining and starting to cry over the pain in her legs. Terry heated up her leg wrap and she slept with it wrapped around her legs and feet. She woke up just after 4 am wanting it heated again and that lasted until about 9 this morning.
I hate her having to wake in pain. At least we have the MRI scheduled - but, I doubt we will be able to do much about the pain until after that.

It is already starting tonight since she just called us wanting tylenol and calming lotion for her legs.

Speaking of calling...on Thursday morning I woke to the phone ringing. When I answered it this sweet little voice asked "Would you please come down and get me up Mom?".
She dialed up our house number and called when she woke up.

When we went to Summer All Stars on Thursday everning she was there without her running crew. Her other girlfriends were all out of town and Bri was not feeling well so it was just Mad with some of the other patients. The volunteers were asking where her posse was "..they are all out of town but it's OK because I am the group's spokesperson".

Today she has been playing with the same 2 dolls all day. I was informed they are named Crimson and Windell. When I asked how she came up with those names she just shrugged her shoulders and smiled. Crimson and Windell had a very busy day with surgeries and dressing changes.

One MMQ and I am calling it a night -

"I'm not a human bean."

Then what are you?

"I'm an alien from outer space."

There are days that I would not argue with that.

Have a wonderful holiday!
All our love,
Connie & Madeleine

Thursday, June 30, 2005 10:04 PM CDT

The days seem to be passing too quickly.
We did not have as much of a methotrexate meltdown this week, thankfully. I phoned the clinic because I was noticing that the dose we gave her last week was larger than we were doing in the past. Well, they wrote the Rx for the same amount as the oral and the oral is more because it is not absorbed as well...so, we went back to the old dosage. She was wired and nervous but nothing like last week!
She has been complaining of pain more often and she tells me her legs feel like they have glass in them. That was a new one! I did not say too much about it and then she was walking with my mom a couple of days later and told my mom the same thing. Her doctor went ahead and ordered a MRI because that is the only way we can see what is going on with her muscles. Her labs stay pretty good so they are not reliable to check for active disease.
Today we visited our awesome nurse at Y Medical today to get her dressing change and we firmed up our time and days for next week. She is getting her solumedrol there Tues - Thurs so I think I better make a Target run for stuff to keep her busy.

Monday we went over to our friends Beth and Cleo's house for dinner. Cleo was getting her solumedrol infusion so the girls played while that ran and then had a nice dinner. We took them outside to ride in Cleo's Barbie Jeep and they had a ball. Madeleine was in tears when it was time to go. She could have stayed all night. :)

On Tuesday she did something that made me sit down and laugh - later after I had cleaned up the damage.
Madeleine has a bag of medical equipment that she works on her dolls and animals with. Stuff like b/p cuffs, tubing, connection sets from dressing changes gone bad so they were not used - assorted stuff along those lines that she has snatched up throughout the last many months. She had all that out and was playing on my bed. One of her dolls had a faux PICC line that has a dressing just like hers - it's fairly real looking. I had been busy and came up and sat down and noticed my bed was wet...very wet!

Me: What is this on my bed??
Madeleine: It's just normal saline. I had to flush my baby's picc line you know!
Me: Where did you get normal saline?
Madeleine: From the sink - ok, so it was not real but it was pretend normal saline that I got from the sink. OK?

She was taking syringes from her bag of tricks and filling them in the sink then flushing the baby's "PICC" line. Since it's just a play PICC line the water was coming out the other end and in my bed. argh!!

Several friends probably remember a time when she was little and went fishing in my bed. I was in the shower and she got a big bottle of water and was trying to make a pond to fish in. The problem was that she was doing it in the middle of my bed and the water kept soaking in and so she would have to keep adding more.
Why does it always have to be in my bed??

On Wednesday morning she was up at 4something AM with pain and was being high maintenance. At 7:30 she told me to get that methotrexate ready and hurry up and get on with it. I jumped up and took advantage of that invitation pronto. She was not a lot of fun all day and had some weird food cravings. At one point she had Andrew toast her some cinnamon pop tarts. She took those up and sat down beside my bed so that she was using it as her table. Why is it always my bed?? Anyway, she got a bag of Lay's potato chips and would break apart the pop tart and scoop out the cinnamon stuff like dip with a potato chip.
Yum. Doesn't that sound tasty?

I hope everyone has been having a great week. We will say goodnight with a MMQ -

"Let me stay up late or you will enter the world of pain!!"

All our love,
Connie and Madeleine

Friday, June 24, 2005 10:02 PM CDT

What a week!
Since we were successful in getting injectable methotrexate Madeleine got a shot on Wednesday. The difference in her afterwards is completely different from the oral form.
This child has been a total maniac. We gave it to her Wednesday morning first thing. I am so glad that I really did not remember how wild it made her! Thank goodness we gave it to her early and not later in the day. hoo boy
First she cried and screamed at me - that brings us to your first MMQ:
"How can you do this to me? For goodness sakes I AM YOUR CHILD!!!"

So, after she made me feel like crap for doing it she stared me down and got the injection without a whimper. If I was not so jacked up on effexor I would probably just shut myself up in the bathroom and sob. She went on about her business and was fine. Then the meltdowns started coming fast and furious. At one point she crawled under the table where we have our computer and she curled into a little ball and screamed her lungs out. When she was done she came out and started playing again.
That night getting her into bed was a major challenge and then she was up at 5:20am with her arm hurting. Terry put her into our bed and she sat there coming up with reasons for us to get up until we gave up. She had us all worn out from the mood swings and meltdowns.
Thursday evening we went to TSRH for the Summer All Stars program. We wanted to see Brianna since she is still inpatient and I figured it might help if Madeleine did some of the activities. We were so tired and she was not showing any signs of slowing down.
After scoring a load of goals playing hockey on the tennis courts she told us that she was very tired. Terry and I had been sitting there watching and she looked horrible. We were wondering how long she could keep going! She was very pale and her eyes were big and tired looking.
We brought her home and she threw a few fits on the way. Terry and I were so sure that we would pop her right into bed and we would collapse...wrong.
She was so exhausted that she had an even bigger meltdown. She wanted a story but she did not know which book. That sent her into a spiral downwards and there was no fixing things. She was a total wreck when we finally managed to find THE book and then she went to bed. This child slept almost 13 hours.
I could not believe it and just sat here this morning watching the clock and waiting. Little Willie normally jumps up the minute he hears her voice and he took turns pacing and sitting with me waiting. When she woke up she was very weak, shaky, and starved!

All we managed to do today was a quick trip over to June's Dancewear to get new dance shoes. On Tuesday at dance Ms. Jane and I were looking at how small her ballet shoes were getting. We are always excited to make a trip over to see Ms. Judy and Ms. June.
Madeleine had fun visiting and trying on shoes. She loves Judy's kitty Pumpkin and she tried to work a trade for her. If Judy had agreed to it Madeleine was going to trade one of Andrew's cats for Pumpkin. It was pretty funny. We left with a new pair of ballet shoes, tap shoes, and a very cool pair of microfiber dance socks. It's hard keeping up with all the trends but we are trying!
When we left she wanted me to help count how many days until her next dance class.
That was enough excitement for her and she wanted me to hurry and get home again.
She spent the afternoon resting and playing gameboy on my bed. Who would have thought that 2 days of solid meltdowns would be so tiring??
I am still recovering and to think I have this to look forward to next week. We need some kind of endurance training program for parents of kids with chronic illnesses.

For all the MMQ fans:

"William would have a complete crisis if he knew this show was on and he was missing it"

Then tonights gem:
"Mom?"
yes, Madeleine?
"How does my new phone handle missed calls? I need to know because I cannot be missing any calls"
She is FIVE years old going on 25!
I think my mom better up those minutes on her cellular plan.

It's been a long day and I am heading for bed!
all our love,
Connie & Madeleine

Monday, June 20, 2005 10:44 PM CDT

I just spent the last thirty minutes writing a nice update and then my #*$#*$# computer crashed and now I cannot find it. It's a good thing I have so much patience and don't mind typing it all over again. *cough*

We had a pretty good weekend. Madeleine has being thrilling us all with very exciting mood swings. Yesterday Andrew and I were playing Skip Bo with her and I think I played a card that made her upset and next thing we know she is having a full blown meltdown. The kind that lasts a long time and leaves her with those big dry sobs afterwards. She crawled under a small table and hid under the tablecloth until my mom dragged her out. I don't think at that point she even knew why she was crying. It was that kind of day and when she was not crying she wanted her legs rubbed and would not tell me if she was hurting or not.

It is a challenge keeping her in and out of the heat and sun. It's so hot inside the car when we get in and that makes her feel worn out. I try and get the a/c on and let it cool off some before she gets in but it's hard to always be able to do that.
Today she really wanted to go to the playground so we waited until around 7 pm and then I took her to a school that is a block from my mom's house. There were only a few other kids out there and she had fun playing with them. Little Willie loved all the attention from the other little girls and he was a total ham on the slide. He sat in my lap and Madeleine pushed us on the swing. He is such a nutty little pup and he loves to swing. After awhile a little girl that was 3 told me that she had a poodle at home too but that he does not talk to her. Madeleine looked at me and smiled...I guess she told her Willie talks or something??
I felt really out of the loop on that.

Now the moment you have been waiting on ....MMQ's:

"Mom?"
yes, Madeleine..
"What is the word for paddleball in Portuguese?"
huh?
I have no clue.
"I am not kidding MOM"
and I was?

"I can speak Jambese and I can grant wishes too. Do you want a wish?"
I wish she was not watching so much PeeWee's Playhouse. It is on DVD and she is not watching anything else and goes around quoting lines from the show. I am trying to decide if this is a good thing or not...

This last week we all upgraded our cell phones and when they were delivered we had to call and they turned off the old ones. Madeleine was sitting there through all this and then asks my mom if she can have a phone too. Mom says sure and hands her one of our old ones they just turned off the service on. Madeleine grabs it and runs for her purse where she keeps her list of phone numbers. She carefully dials and then waits...then she snaps it closed saying "This damn thing won't work!"
Mom picks up a phone that will work and orders her one that will. What the heck?!?
Times sure have changed because if that had been me at 5 I would have had my mouth washed out and been whacked with a hairbrush before I could have snapped that phone shut. Sheesh!

Madeleine is awake and asking for Tylenol. I could feel the muscle so tight in her little leg. It's heartbreaking for her to have to be in so much pain.
Yesterday we heard about a 5 yr old in CA that has JDM and has been on a vent for the last 4 weeks. I hope and pray she will be strong enough to keep fighting. It is scary how quickly these kids can go downhill.

Take care everyone.
All our love,
Connie & Madeleine

Thursday, June 16, 2005 10:12 PM CDT

It's been a very long day here at Camp Chaos.
Madeleine was up at 4:20 this morning with pain in her leg and foot. She did not go back to sleep until around 9 PM tonight. ARGH!! Other than a quick trip over to Y Medical for a dressing change, she spent the day between my bed and playing on the computer. She feels miserable and is so weak. Since it's Thursday we were going to Summer All Stars at the hospital but she was not up to it. She was not a happy camper about missing it but there is no way she could have been out in the heat tonight.

Monday in clinic we did not get to see Dr. Punaro. She was out for the day so one of the other doctors did Madeleine's exam before admission for treatment. Her rash looks really good but she has been so weak with little stamina. The plan seems to be more wait and see...this is not always easy! Dr. Carson is looking into how things were going at this point in her medicine tapering last year. While we were in the hospital Madeleine spent most of the time in her room in bed. When she does this I know something is not right! She was not interested in doing any volunteer activities and even passed on playing with Allie the poodle. THAT is huge!
I did talk to the other doctors about going to the NIH to see Dr. Rider. Hopefully she will be able to work Madeleine into one of the studies there. I was so impressed with Dr. Rider from our phone conversations and I would like for her to evaluate Madeleine's condition. She asked about several tests that Madeleine has not had that she feels are important.
Dr. Rider stressed that IF she is able to get her in that it could be October before she can been seen.

Since my little one has not been feeling well her best MMQ's have not been very nice. For example:

"..what is that supposed to be?"
It's a kitty Madeleine
"No, it's a poorly drawn cat..."

Andrew to Madeleine - It's 8:00 pm (meaning it's your bedtime)
Her reply - "Well, here it's shut up o'clock."

"You have really put me through hell this morning."
That was after trying to get her oral meds in her for over an hour.

I hope tomorrow is better. Her diarrhea from the solumedrol started on Tuesday and her poor belly has been swollen and sore. We did talk to the doctors about going back to the methotrexate injections. Taking it oral is too hard on her stomach and she is getting sores in her mouth from it too. It is supposed to be coming back into stock and should be easier to find. I don't relish giving her the shots but they seemed to give her much more benefit.

Please remember Brianna in your prayers. She has been so sick and I could hear her crying when I was talking to Kim earlier. I hope they figure out what is making her so sick soon.
These kids are so tiny and they can get dehydrated fast.

I am going to bed while it's quiet here! I hope the girl will be able to sleep tonight!
xxoo,
Connie & Madeleine

Friday, June 10, 2005 10:04 PM CDT

I cannot believe it's Friday already! We have been taking it easy when we can here at home. I am very careful about letting Madeleine out too much. She gets so excited to see friends and play and then she wears herself out completely. Then she has to rest for a day at home before she is up to more. We are a wee bit concerned about some of the things going on during the two week gap since her last treatment. Her stamina is less than it was a few weeks ago and she is waking in pain at night. One night was off and on pretty much most of the night. I would start rubbing her legs when she would start whimpering in her sleep. It had gone on for so long that night that Terry had given up and put her in our bed.
I phoned our clinic and they told me that they were not surprised by the pain. That it was because of all the damage that the disease has done to her leg muscles it is to be expected.
That really makes me go "hmmmm...."
She was not waking as often in pain in the night when she was getting weekly treatment. It's not like she was getting any painkillers - they only allow her Tylenol. I just don't know about that.
In comparing some issues with other parents of JDM kids I am learning that the swollen glands are most likely tied into her JDM. I am planning on finding out more about that when I get time to research and ask around some more. Madeleine's are still swollen under her left arm and at times they are so sensitive she jumps if anything touches that area. I had her home health nurse check it on Wednesday when we went for dressing change. She could still see the inflammation as well as feel it.

Last night was Summer All Stars at TSRH and we had a special surprise. Before we arrived there we met Kim and Brianna and had dinner - that was awesome and we must do that again! Maybe next time we can get the other girls and moms to come early too.
Then when they were getting started at the tennis courts the volunteers told them that a motorcycle club was coming to visit the kids. You could hear them coming down Oak Lawn as we walked towards the front of the hospital. Madeleine spotted one of her special volunteers and went right to Ms. Laura. They were standing at the rails above the walkway where all the bikes rolled up. It was very nice the way they came in - like a parade and very festive. Then came the surprise - I don't know if Madeleine saw her cousin Jessica first or if Jessica saw her but next thing I know Laura handed her down for hugs. My stepsister is very active in her bike club and this was the one visiting! We had NO idea! They had no idea we would be there too. Jessica was following all the bikes in her car to bring up the rear and help out. So we got to spend a little time with Kristie, Jerry and Jessica - thanks so much guys for coming out to TSRH and making the fantastic donation. Their club raises money for the hospital and the kids had so much fun sitting on the bikes and taking photos.

After seeing all the Harleys, Cleo, Bri and Madeleine went over to the park. Madeleine did not have to be there but minutes when she took a fall. She scraped both knees but the areas that surrounded the scrape turned dark reddish purple almost right after she fell. It looked really strange. Today they are not as dark but she is hobbling around and resting more again. She played pretty hard last night so I am sure that is part of the reason she is needing the rest today. Her mood has been awful at times today. She is screaming more and more and again, that is what she does when she feels miserable.
More than once this past week she has laid on the bed and told me that she just feels terrible. She has asked me if she has a fever because she does not feel well.
This is not normal for her - she would be taking care of everyone else even when she could hardly get around.

We sure missed our friends Julie and Emily last night. We send you big hugs Emily and I hope you are feeling better!

Sunday we are having a JDM family support meeting for our area. It's going to be great and we have been looking forward to this. Monday morning we are back in clinic and then admission for treatment through Wednesday. Unless things change she will get her solumedrol in the day and then IVIG at night. I hope it gives her a boost and she can feel better.

I will do better and make an effort to post more often. It's just been a little discouraging since the things happening with Madeleine are so similiar to last year when we started tapering. I don't want her to get so run down again.

Good night friends!
All our love,
Connie & Madeleine

Saturday, June 4, 2005 10:06 PM CDT

Hello!

It's been a pretty busy week here. On Tuesday we met at the dance studio for Madeleine to learn the recital dance. That went super and there was a great turn out of her class to help her learn and to practice. That evening we had the dress rehearsal over in Arlington. The kids were all so gorgeous in their make up and costumes. It took awhile and the girl was very tired afterwards. Andrew and William had been watching in the audience and they were tired too! Thank goodness they were patient and stuck it out while I was being a dressing room mom.

Also on Tuesday we did our dressing change at Y Medical (or as Madeleine says Medical Y) and she had some irritation that burned pretty bad. We kept a close eye on that area and it has calmed down since then but it was quite painful for her. I am not able to check those lymph glands under her arm - she goes nuts if I try and feel them.

Thursday evening we went to TSRH for Summer All Stars and she had a blast there. It was extra special because besides Madeleine there was Brianna, Emily, and Cleo - 4 JDM girls all in one place. They were all adorable together and I am so mad that I left my camera at home! Next week I am going to put it around my neck so that I don't forget it! Madeleine was very crabby and tired after playing so hard. I hate for her to get so tired but it's good for her to be able to enjoy some time with the other kids. The girls all followed William around making him nuts but I think he really likes it.

Friday was the big day! It was her big dance recital and she was so excited. We kept her home until time to go and she spent that time taking it easy. Then when I put her in the shower Little Willie jumped in there too. I had to call in backup (Terry) to come and dry off Willie while I dried off the girl. Then we spent over an hour working on makeup and hair. Her costume is bright pink and black and very sparkly. They had a hairpiece of matching pink feathers that was super fluffy and we pinned it just a little to the side. The girls all looked so beautiful! When we lined them up backstage they were able to watch the other numbers that were on stage. They were so cute watching and whispering. Many of the girls that performed at Madeleine's party came over to see her and say hi or give hugs. It was such a special night! At the beginning of the program they showed a few photos and some were from the party at TSRH. Then Mr. Richard came out to give a speech at the start. During that he mentioned the party at the hospital. It was a very emotional speech and we were so moved. Mr. Richard and his family are so special and I hope that anyone in our area that has a child interested in dance goes to A Step In Time. They are not only a top notch studio - they are good people.
The dances flew by and before I knew it the girls were on stage for Long Way Baby. Was that a fitting number for Madeleine to be doing or what? Just since the end of last year she has certainly come a long way. I watched from just inside the wings and she was so precious...maybe I am biased but I could not help it! All the girls looked great! I cannot wait until we get the video to watch it all over again. After their dance we took them to the dressing rooms until time for the curtain call. By then Madeleine was tired but not ready to call it a night. She loves going back on stage to do the curtain call and bow while the crowd goes nuts. At intermission I was going to take her home because she needed to get her clothes off and rest. Getting out of their was almost impossible. She wanted to say bye to everyone and hug all her friends including Ms. Alyssa and her teacher Ms. Jane. We went around following her - she had her arms filled with a big bouquet of pink roses and would not give them up for us to hold. After giving out loads of hugs she was ready to go...until she heard Mr. Richard inside the auditorium. We stopped at one of the monitiors in the lobby and she wanted to see the "big" girls getting their awards. They got awards for 5 and 10 years of dance and we knew many of the girls getting them. Then she was ready to GO! When I buckled her in she told me she was so tired and starved. I grabbed food on the way home and we got her tucked in right away. It had been a very exciting day for her.

Today Madeleine had fun playing with her cousins Sarah and Aaron. Aaron played ball with Willie until they were both tired I think! Sarah and Madeleine baked a cake for tonight's dessert and it was delicious. Thanks Les for all the schoolwork! Madeleine is going to love working her way through it all. The word find is very cool too! We are going to share some copies of it with her friends too.

I want to send a shout out to Mary Beth for the awesome package she sent Madeleine! You are a lifesaver! Madeleine squealed when she looked in the box "LOOK!! MOM!! I got Prevacid!!!" Imagine that echoing through the post office - it was hysterical. I know all the people watching thought we were nutcases getting excited over medicine. :)

Also, thanks Sarina and Heather for the Phillies bracelet - Madeleine thinks it is soooo cool!
You guys are awesome to think of her. Please give Sarina a big hug from us.

Ms. Jane - thank you for the sticker! It is wonderful and we love the correct spelling. ;)
You rock!

One more - thank you Mrs. Martin! We love you!! Thank you for looking our for us!

I am still worried about Madeleine having so much pain. She is requesting Tylenol more and more often and I don't think that is a good sign. Her rash is not too bad but she does have some heliotrope or purple patches around her eyes.

If you have a chance please check out the new memorial fund info at CureJM.com
They have created a special fund in memory of Mikey who recently died from complications of juvenile dermatomyositis. This fund is earmarked for a specific research project. This foundation is very special - it was started by parents and the goal is a cure for this awful disease. Madeleine's photo is on the Faces of JM page.

I hope everyone is having a great weekend.
all our love,
Connie & Madeleine

Sunday, May 29, 2005 9:50 PM CDT

Are you sitting down? Were you shocked??
I finally started getting the photos posted! Above and in the photo album is the first installment of Madeleine's Make A Wish party and trip to Disney and Give Kids The World.
It should only take me a year to get through all of them! Ha!

Things are quiet tonight here at Camp Chaos. Madeleine has had a tough time getting back on track wtih her stomach after last weeks solumedrol. I am feeling like a big time loser for not forking over the 120.00+ and just buying the Prevacid instead of wasting time by arguing with the insurance company. We did get some on Thursday and it was no thanks to Cigna!
Still, she has been uncomfortable but the reflux has seemed to stop again.
Oh! Before I forget to tell you - we picked up the prescription they wanted her to try instead of the Prevacid. It's a generic prilosec and insurance would only pay for 8 days worth because 68 days is the most they will cover for this. (??) They wanted us to try something else but will only pay for 8 because they covered her last 2 months of Prevacid. WHY the #*$(#)*$#( didn't they tell us that during all this? Plus we told them it had to be something she can swallow...do you think it is? Uh, no. They are capsules that cannot be crushed or chewed. What does it take to get someone to just listen? I feel like I could get Little Willie to get it before these people will.

Friday we slept in and rested from the fun time Madeleine had at Summer All Stars. Brianna and Cleo both made it and the 3 girls had lots of fun playing. We got a big surprise when Tank came running out. He saw Madeleine and he dropped his crutches and hopped on one leg to throw his arms around her. That made our week to see his little smile!

Then on Friday evening I am pretty sure another 5 years or so was shaved off my life when a tennis ball smashed Madeleine square in the chest. She was standing on the court talking when her brother thought it was a good idea to serve it to her...it would help if he knew how to control the ball but we won't go there. It knocked the wind out of her and scared us all. I caught her before she hit the ground and after a few minutes she was pushing me away. We watched her closely and she ended up being ok. There were broken veins that surfaced pretty quickly and it freaked me out that it hit her right in the heart. Later that night I had Terry carry her up and put her in our bed so that she was close all night. That meant spent the night keeping Little Willie and the cats away from her.

Lots more happened on Friday but it did not directly involve Madeleine and it would take me all night to type. By Friday night late my mom was calling to check on Mad and tell me that she was ready for this week to end!

I have a few MMQ's but I am going to save them for another night. Tonight I want to ask you a favor. Mikey is a beautiful 2 year old that was dx with juvenile dermatomyositis about 6 months ago. We has been on a vent and was recently put on the transplant list because his little lungs were to damaged. Early Friday morning Mikey died in his mother's arms. Please send thoughts and prayers for his family.

The girl is calling from downstairs. She seems to be having trouble getting to sleep...again!
I am trying to remain positive but this seems awfully similiar to the last time she was starting to taper meds.

I hope everyone is having a safe and happy weekend.
All our love,
Connie & Madeleine

Thursday, May 26, 2005 4:55 PM CDT

Sorry for the delay in updating!
We were at Y Medical the last 3 mornings for Madeleine to get her solumedrol infusions. First thing Monday morning her blood pressure was high before time to start the medication. They phoned the clinic and they had our nurse give her nifedipine and wait 45 minutes before starting. Great...the solumedrol is 4 hours itself! After the medication and waiting she was good to go and she baked with the Easy Bake Oven. Our nurse brought her daughter and they had fun making treats. On Tuesday we took our Shrinky Dink Oven and they took theirs and we made Shrinky Dinks. Anything to keep Madeleine happy and pass the time.
The bad part was that her stomach was taking a beating from the solumedrol. She always has pain and reflux but especially during the days she gets the infusions.
I am SO ticked off at Cigna that I cannot see straight. They decided that they would not cover Prevacid for Madeleine any longer. Where do they get off making a decision like this?? We tried other drugs and they did not help her - the doctor told them this but that was not good enough. They sent us a letter saying basically until she has cancer of the esophagus or some sort of malignancy that we can forget it. Either we find something they OK or we buy it ourselves. They will be buying blood pressure meds for me next because I have been so damn stressed about this. How can they do this to a 5 year old child??
This medication kept her belly from all the painful swelling that happens from the solumedrol. It stopped the reflux completely! I called the pharmacy and they quoted me 120.00 for 30 days. argh!! One child just had car trouble and a root canal done this week...
Meanwhile we went back and forth with the insurance people for days while nothing was helping Madeleine's belly. Last night she was miserable and laying on my bed crying over how bad it was hurting. I went over and took out a box of Tylenol to get her a dose of that and out fell a single dose of Prevacid. They are melt away or solu-tabs so they are in the little foil packets and one tumbled out of the box into my hand. I squealed and told her what I found. She popped it right into her mouth and this morning the swelling is gone. She has been able to eat a little more of her chicken and dumplings too!
I wish someone would explain to me why some yahoo in another state that is not the physician caring for my child can just out of no where decided they will stop covering a medication! We appealed and re-appealed and they will not budge. I called the manufacturer of Prevacid and they said "sure we can send it to you at no cost....unless of course you have Rx coverage..then she does not qualify to get it at no cost." It does not matter that we have insurance coverage but they refuse to pay for this. ARGH!!
See why I am mad? This just sucks and it's not fair! Please - NO e-mails telling me that "Fair is where they sell hogs" I am just not in the mood. This is just so petty but when you add up all the other meds and such it is big money.
Oh! One more thing is that this medication comes in the meltaway tablets which make it easier for a 5 year old with swallowing difficulty to take. Cigna does not give a rats arse about that either. As Madeleine would say "grrrrrrrrrr".

Today she is taking it easy because she wants to go to Summer All Stars at TSRH tonight. We will get to see Brianna and Cleo too and she is very happy about that.

Yes, I know that I have not uploaded the photos from Disney yet. I promise it is on my list...and it's a very long list these days. Sorry!! I will make it up to you guys.

How about some great news?
Mr. Richard and Ms. Jane from A Step In Time are trying to work out a way for Madeleine to be in the recital this year. She has missed all of her classes but they are putting their heads together to see how she can participate next week. WTG guys! We love you all so much!!

We hope everyone is having a great week!
XXXOOO,
Connie & Madeleine

Sunday, May 22, 2005 9:20 PM CDT

Tonight we are all packed up for a long morning tomorrow at Y Medical, or Medical Y as Madeleine calls it. They are going to run her solumedrol there so I have bagged up snacks and stuff to keep her busy. I hope they are ready for the girl - she can get fairly high maintenance when the drugs start flowing.

She has been complaining of pain in her right leg and back. In fact she was up part of Friday night and Saturday AM crying over the pain in her leg. Now it's her back that is so bad she will not let me touch her there. If I even try to rub it she screams so I have kept the Tylenol flowing.

Saturday we went to TSRH for the Farm and Ranch Day festivities. She and her friends, Brianna and Cleo had a great time. We did not stay outdoors too long since it was very hot out. Bri had to get her medicine started so we went inside and all of us got popsicles to cool off. The girls played and had loads of fun - Madeleine was cranky but ended up having a very good time. When Child Life opened we went there and they played with the girl sized gurney and medical equipment. She was having such a good time I thought I would have to drag her out to go home.

Can you believe that was our weekend? We never have weekends that quiet!

Here are a few quick MMQ's :

"That really gives me a gland-ache"
Her lymph glands are still swollen and very painful.

"I do not want just some random place you pick"
That was what she told me when we were on the go and I asked what she might like to eat for lunch.

"Is Yoga still alive?"
When Terry and Andrew came home from seeing the new Star Wars movie.

"I like Yoga but he scares me."

I hope everyone had a great weekend!
All our love,
Connie & Madeleine

Thursday, May 19, 2005 11:19 PM CDT

Finally! I manage to get online - argh!!
Last night I sat down ready to update and CB was down. So, tonight I was good to go and I could not get online until now. What is going on?? Oh well, here we go!
Madeleine's MRI on Monday showed loads of improvement! Her leg muscles have never looked so good - didn't you guys hear our cheers late Monday afternoon?
The doc's are going to start weaning her IV meds by spacing them more.
She got IVIG this week so next week it's solumedrol and then she has 2 weeks off. Woo hoo! We will not know what to do with ourselves.

Am I pleased? Heck yeah! Am I worried? Oh yeah.
Last time they started spacing her infusions is when she started to decline. It took just a few weeks and we could tell that she was getting worse. Please be sending the thoughts and prayers that this time it will be ok. She is in much better condition this time as they start the spacing and that has to make a difference.

We did not get home until Wednesday afternoon because she has some swollen glands under her left arm. They did an ultrasound and checked the placement of her PICC line. It looked fine and they did not have any answers for me on the glands. She is complaining that it's very painful so I guess I will just keep an eye on that situation.

Tonight we took her over for Summer All Stars at the hospital. She went to this last year and had so much fun. It runs from now until mid July and they have different outdoor activities every evening. Tonight they played bocce ball, lawn toss and a couple of other fun games. I had one very tired girl when we got back home!

I am sure she will be up bright and early so I am going to get to bed. Her breakfast of choice has been either chicken and dumplings or rice a roni.

A quickie MMQ -
tonight we were talking about how she will have two weeks off IV drugs after next week and she says:
"What?? Do you mean I am in intermission??"
It was so cute because she was so serious but we had to explain to her that she is not in "remission" but someday she will be. I guess those two weeks off will be sort of like an intermission....

I am going to get busy getting new photos uploaded from our trip and the party!
love to all!
Connie & Madeleine

Sunday, May 15, 2005 10:35 PM CDT

Wow.

I am not sure where to even begin! You will probably have to get this in bits and pieces in coming days.
We got back in late Friday night and Madeleine has been in her pajamas since we made it home. To say we had a super-great-wonderful-unbelieveable time is a gross understatement.
Madeleine is still floating in the clouds and has been talking about when we can go back. She was thrilled to see Little Willie at the baggage claim at D/FW and if it weren't for him we would have had a hard time getting her back home. Leaving Give Kids The World was emotional for all of us. They made us all feel like we were at home with family and I will be writing more about them for sure.
I just thought I was tired from a few days a week in the hospital with Madeleine every week! A week at WDW with Madeleine has me worn out! More than half of our luggage is still waiting for me to unpack - argh! I am going to deal with all that later in the week.

Andrew has been going through pizza withdrawal since we got home. All you had to do was call 262 from the phone in our villa and they would deliver pizza in about 15 to 20 minutes - all you could eat! He was spoiled by that and it was a harsh reality when we got home and he could not dial up some pizza. Is that a 16 year olds dream or what? He keeps telling us to call 262 and order his pizzas.

William added to his key chain collection in a big way. His bags were full of them by the time we were packing to leave. He was a great sport to ride the stuff Madeleine wanted to ride (over and over and over) without too much complaining. Then he talked us into Stitch's Great Escape...nothing like the smell of burped up chili dogs in a room packed with people. yuck! He begged me to ride Space Mountain and of course that got Madeleine wanting to go on it. Well, she is a small girl! In fact she was just tall enough to ride if she looked up and hurried past the measuring stick. When we were about to get on it they would not let her sit in the seat with me - I said fine and told her to come and we would wait for William and Andrew. She started crying and insisted she could do it - how could I be so mean to make her cry? All these people were glaring at me and she was sobbing and there was no sign that she would stop. I gave in and the guy puts her in the very front of the darn thing! I sat behind her and leaned forward holding on to her under her arms. It took off and she lifted out of her seat and I am sure about 10 years flew off my life. When it slowed down a little bit I felt her face to see if she was crying - no, she was laughing like crazy and yelling at me to let go of her. The nut! She had so much fun and wanted to ride everything.
I got the heck out of Space Mountain afterwards before she could insist we ride that again. My nerves were completely shot by that. Dumbo and Snow White's Scary Adventures is more my speed.
We rode Goofy's Barnstormer no less than 10 times. She loved that one and wanted to go over and over.

Madeleine did really well. We worked hard to keep her out of the sun and she rode in her wheelchair at the parks. That was a big help to keep her from getting worn out. She would kick her feet for me to go faster - "..hurry UP Mom!....you are going toooooo slowwww!"
The first day we hit the Magic Kingdom she started kicking the minute we left the monorail station. We could not get her to Cinderella's castle fast enough.
Being in crowds was a challenge at times. That is hard for her and she gets very nervous. I tried to keep her to the edge of large groups of people the best I could. Inside the Haunted Mansion they mash you into a big room and she was climbing up me literally. When the doors opened she breathed a big sigh of relief but would not walk because of all the people still around us. She falls easily and people tend to walk right into her.

I will have to tell you about taking her to EPCOT and how she kicked and screamed until we got to the France section. She wanted to see the Eiffel Tower and be Madeleine in Paris. We all had a lovely lunch there and the rest of the day she kept saying how she was Madeleine in Paris.

I have only few quick MMQ's that come to mind...remember that my mind is very tired still. ;)

We were walking from our villa to the Gingerbread House at Give Kids The World for dinner one night when she says:
"I wish these aliens would stop shooting at me!"
I do not know and I did not ask.

Last night when we told her it was bed time she wanted to play Diner Dash instead.
"I'm not here right now so I can't hear you. Please leave a message and I will get back to you."

Tonight I told her it was time for bed - she has a big day tomorrow and she needs her rest.
"I am not getting an MRI tomorrow. I am tired of them and of medicine so you go get it for me and let me know how it is."

So many wonderful people made Madeleine's party and trip happen. I want to thank everyone that helped and everyone that came out to share her special day.

I will get some photos added soon!

Please be thinking of our girl in the morning. We want very good MRI results so that they can start weaning her off some of the steroids and IVIG.

Thank you for sharing some time with us. We love you each and everyone!
XXOO,
Connie & Madeleine

Tuesday, May 10, 2005 2:10 PM CDT

Just a quickie update!

I am back in the teen room but they have not caught me yet. hee hee

Our is doing great. She is very tired so we are taking it easy today at Give Kids The World. There is so much to do here she could stay here for months!

Yesterday we were at EPCOT with everyone until Terry and I took Madeleine back over to the Magic Kingdom. There we had lunch in Cinderella's castle with Cinderella!! It was so much fun and so beautiful!

This morning she rode in a horse drawn carriage after breakfast and then did a little shopping.

Tonight we are going to a special dinner party with Cinderella. This kid is way too busy!!

She has had a terrible problem with her belly and nothing seems to be working. She is fighting through it though and is determined not to let it slow her down. We are trying to get her to take things slower since she is clearly getting very worn out. That is a full time job!!

Thanks for checking in on our . We love you all!
Big hugs to Heather, Julie, and Amy - please give Little Willie loads of hugs and kisses from his mommy Madeleine.

XXOO,
Mom and Madeleine

Sunday, May 8, 2005 7:27 PM CDT

Happy Mother's Day to all our dear friends out there!

Nanny Charlotte - Happy Mom's Day! We could not reach you but hope you had a great day! We love you!

Madeleine is so happy!
Our flight was great. When we got to the terminal I realized that my cell phone was in my truck out in the lot. It was too late to go back for it too. When we were loaded on board Granny's cell phone rang and it was Cinderella calling for Madeleine! She was completely thrilled!! Do we have the best Wishgranters or what??
The flight was over so fast and before we knew it we were landing in Orlando.

The best MMQ's came during the flight:

"Now that I am a princess I am so popular."
After hanging up with Cinderella.

"I just want to feel like regular Madeleine and regular Madeleine is hungry!"
Taking off her tiara and sash during the flight.

"Andrew, William, Dad, get handsome!
When we were about to land.

Give Kids the World is unbelieveable. None of us will want to leave here.

We spent today at the Magic Kingdom. Madeleine was going nuts when we went through the gates and she saw Cinderella's castle. If I would slow down pushing her she would start kicking and yelling. She wanted to get to that castle!!
Seeing the Princesses and Minnie Mouse up close and personal was so exciting.

There is lots more to tell but Terry and I are in the teen room and we have to get out soon. They did not want to let us in at all but I begged and they told us we are very mature 18 years olds if we promised to hurry up. Well, they are believing that I am a mature 18 but not Terry so we have to cut this short! They keep giving him looks.

Heather, Julie, and Amy - Madeleine is going to have a fit when she sees Little Willie in the guestbook!! We are running back to the villa now to tell her. Granny can log on at .10 a minute and let her see him. :) You guys rock for taking such good care of him. Madeleine loved getting to talk to him this morning on the Mickey Mouse phone in the room.

They are asking Terry for his ID now so we have to go. Ha ha they said I could stay longer but he has to leave so I guess I better run.

We love you all!!
Mom and Madeleine

Friday, May 6, 2005 10:02 PM CDT

Guess what?
We are packed! You know, I thought I would be still trying to get it together at midnight before we were ready. Madeleine is feeling pretty good. The diarrhea from the solu-medrol is just about over and her belly is not as swollen tonight. Hopefully she will not go into a chicken and dumpling frenzy while we are on the plane. This child has been eating almost nothing but chicken and dumplings for days. She gets that from her dad I think...he can eat the same food over and over and over.

I want to share a fun photo of Madeleine with you.
http://www.dfw.com/mld/dfw/news/local/states/texas/northeast/11559886.htm
You have to sign up but it's no biggie. We were so excited to meet these Royal Canadian Mounted Police. They were with some of the D/FW Airport Police Officers and we had such a nice time chatting with these guys. Madeleine even tried on their hats!

That was some of the visitors on Tuesday. The other one was a man that just showed up at the hospital and was roaming around looking for Madeleine. It was a little bit unstable but the security at TSRH is very tight and they were on top of things. They had me come and speak with him - we did not know him but he had seen Madeleine's story on the news the night before and asked me if he could see her. He was a little emotional at times and had driven over from Ft. Worth to see her. Since I knew we had the TSRH security team standing by I told him I would see if she would come out to the lounge and meet him.
She had been in bed most of the afternoon just watching DVD's and resting while her medicine was going. I asked her to come out for a minute and she shrugged her shoulders and said OK. The man was nice to her and did a little magic trick. She liked that and then he shook her hand and left. He was happy and gone as quickly as he showed up. I am still not sure who he was but he was a gentleman and very polite.

We tried to put Madeleine to bed early tonight but she is addicted to a game called Diner Dash and would not stop until she completed a level she had been working on.

Tomorrow morning we are off for Madeleine's Wish trip. She is beyond excited and cannot wait to get there. Grandma and Grandpa are probably already there waiting for us.

I have a few MMQ's for you:

"Oh Mom, what did you do now?"
the battery was dead on her handheld playstation and I can assure you that I was not the one that ran down the battery!

"My goalie is trying to score a goal. Isn't that weird?"
Playing hockey on her playstation.

Wooooo hoooo! Stars score! Go girl...go girl!!
She was the Stars and playing the LA Kings. When I asked if she was the Stars she replied
"DUH"

"My goalie is Marty and as usual he will not stay in the net."
Heather, Julie? You listening? ha ha

"It's time for intermission just as it's getting good. Doesn't that stink? My players need to get a drink and go potty though."

She was chattering on about her game when I asked her if Marty was going to get a shut out. I was informed that I had just jinxed her goalie and then the Kings scored. The game was then turned off. Geeze that made me feel bad!

Little Willie is going to camp this week at Heather & Julie's. I hope he is a good boy for them. Madeleine has been talking to him all day about it and he has been so unhappy. When he sees the packing he gets very upset. I guess we will have to phone them and talk to him while we are gone.

I will try and report in from the road. Since I did not get any photos from the party up I will have to work on those when we get home. It will be worth the wait!!
We will report in from the road!

All our love,
Connie & Madeleine

Thursday, May 5, 2005 10:12 PM CDT

There is no way that I can express how wonderful Madeleine's send off party was. If you were there - thank you for coming! We were so overwhelmed with the turnout and I was doing my best to try and speak to everyone. If I missed you please forgive me! Thank you from the bottom of my heart for supporting our princess.

Our clinic visit on Monday was good and we really did not have any surprises. She is scheduled for an MRI on Monday morning May 16 and then will be admitted for her pulsing treatments. The doctor wants to begin weaning her down on the solu-medrol and IVIG. It is a slow process and they want to be careful since she flared right back up last time. There is no doubt that I will be holding my breath the entire time.
She did great during treatment this week and was very good about the mood swings. I know that it helped to have Grandma and Grandpa from MI here! She promised me that she would try and not throw us out and keep the fits to a minimum. Our girl did a fabulous job and kept her grumbling under control most of the time.

Now - back to the party!
She was completely surprised! We kept her upstairs on the nursing unit so that she did not see the preparations going on in the atrium. A local news crew came up to our room and they talked to Madeleine there about her disease and what treatment is like. Then we used the excuse that she was going to take them on a tour of TSRH to get her down to Community Relations. She and Brianna skipped across the bridge singing Little Sally Walker towards the elevators - it was so cute! Madeleine was wearing her Pikachu slippers and dancing around. When she turned the corner into CR there were her Wishgranters waiting to meet her. She stopped and seemed a little surprised to see them there! Then she was led into a conference room where they had decked it out in pink with all the gear to make her into a princess. She just stood there with her mouth hanging open!
We dressed her in a fluffy pink dress with little white leather ballet slippers. Our dear friend Judy had fixed the slippers up with pink bows on the toes. Then Mikaela and Malina added a beautiful sash that Mikaela's mother in law made for Madeleine. She looked like a princess! They did her makeup and added a tiara and scepter and she was so beautiful!
While she was getting ready some of the girls put make up on Brianna and put a little tiara on her too. The girly party was so much fun and the girls so adorable but then it was time to head for the atrium. When we came out of CR with Madeleine and Brianna in the lead they saw Cinderella, or should I call her Cinda - rella? Cinda was in the most beautiful Cinderella dress you can imagine! She was at the elevators waiting for Madeleine to take her to the party. Everything was so perfect and Madeleine was so very excited.
Cinda led her into the atrium where the announcer presented them. The crowd went wild and they took their seats for a show. We watched dancers from A Step In Time as they performed for Cinderella and Princess Madeleine. WTG dancers from ASIT! Mr. Richard & Ms. Jane - you are all so wonderful and the girls are so good. We cannot wait to see the routines again at recital in June! You all are the best!
Madeleine's favorite magician and Dallas police officer performed. Officer Wheeler is a superstar to the kids at TSRH where he performs his magic for them during evening activities. Madeleine has seen him many times but goes nuts when she finds out he is coming. She was so thrilled to see him at her party and enjoyed every minute of his performance.
We had poodles from North TX Poodle Rescue there to perform - they are so adorable!! I wanted to take them home with us! Little Willie would have loved them too. :)
Madeleine's precious Wishgranters presented her with a certificate and her trip to Disney World.
In addition to all the star studded entertainment there was a darling clown, a face painter, and a fabulous cake from Frosted Art Bakery. The cake was topped with a gold tiara and covered in edible pink blossoms. You will have to see the photos of this cake - it was the most beautiful cake I have ever seen...don't get me started on how delicious it was!!

After we had partied down for a little while it was time to go back up to the first floor entrance where a carriage was waiting. The girls from Happy Trails Horse Drawn Carriage were there with a beauiful carriage with Buttermilk and Trigger hitched up waiting to take Cinderella and Madeleine on a ride around the hospital grounds. It was right out of a fairy tale watching them ride off. When they returned Shannon and Jodi were so sweet to let us all take photos while they patiently waited. Those horses are such pro's - I am so impressed with these folks!

Would you believe that during the party we had 5 girls with JDM all there? In addition to them we also have one adult that was dx as a child with it! What are the odds of that?
You are all very special to us and we cannot thank you enough for being there.
All the friends and family that took time from their busy lives to be there for us - we love you all and thank you for being with us. If you could not be with us on Monday then tune in soon for photos from the party. I will try and get some uploaded but it may not happen before we get back from Disney.

Finally - I want to give a big ol' hug and kisses to all the awesome staff at TSRH. You are all so special to us and we love you all! The girls in Community Relations worked so hard to make this day special for Madeleine and they did such an amazing job.
We send even more hugs and kisses to our stellar Wishgranters - Mikaela and Malina! You are the best and we thank you both for all the hard work you have put into making Madeleine's wish come true.

I am still trying to catch up so we can get packed and be ready to jet off to Florida on Saturday...so I am going to make this short tonight. Ha!
Anyway, tomorrow I tell you about how on Tuesday we had unexpected visitors. One was really, really unexpected and the others were a fun surprise from our Canadian friends up north!

Have a wonderful evening and as always, thank you for checking in on our girl. We love each and every one of you.
G'night,
Connie & Princess Madeleine

Sunday, May 1, 2005 10:03 PM CDT

Tonight we are all about to burst from the anticipation. It is amazing that we have been able to keep this big secret from Madeleine! Tomorrow at 2:00 is her Make A Wish send off party. Our wonderful hospital, Texas Scottish Rite Hospital for Children and the Make A Wish Foundation have joined forces in putting together tomorrow's celebration. From all I have heard it is going to be a blast!
If you are in the metroplex please come! We would be thrilled to have you share the afternoon with us. It is at TSRH at 2:00 pm in the atrium. It is going to be a big surprise (we hope!!) and I cannot wait to see the look on our girl's face when she sees everyone there for her.
We leave for Disney World on May 7th - if I can get everyone packed and ready!

Since I am so excited, am I packed for tomorrow? NO.
We have been busy visiting with Terry's parents who arrived yesterday. Madeleine has been so happy to have them here. She has kept Grandma very busy playing with all her toys and reading books. I made her promise that she will not be mean to everyone once she starts getting her solu-medrol. Do I think she will keep that promise? NO.

Because I have to get Madeleine's stuff packed, I am going to give you a sampling of the best MMQ's from the last few days:

"I need a volunteer from the audience"
This is from an audience of one...Andrew, who was (kind of) watching her do magic tricks.

"I am getting so sick of these magic tricks not working!"
After not getting a victim, uh..I mean volunteer and having to do the tricks herself.

"..oh, I have already been..." To nursing school.
Her nurses at Y Medical told her on Friday that she would have to go to nursing school so that she could take care of them one day.

"You do NOT want to look in there..."
Saturday after just before Grandma and Grandpa were arriving and I remembered that I had not checked out the boys bathroom....

"I am about to start my life as a princess.."
She found a bag full of play jewelry and shoes and was playing princess...
keep in mind that she has no clue she is having a princess party tomorrow.

"Hmmm....maybe I can get some tips from Cinderella when I see her at Disney World."
Hoo boy..

"I want my chicken and dumplings NOW..please. I said please so you have to do it.
I am your child and you MUST get me what I need now! Especially if I say please!
But, that works only for girls....not for boys. Never for boys."
I had to stop and write this one down because she was so serious about it. Her brothers would not have agreed with her. It was about 8 am on Saturday morning and needless to say, I did not make the chicken and dumplings until later in the day.

"She's the mother and you better do what she says because she can do some pretty equal things to you."
To Andrew when he was not doing what I asked him to do. No, it's not a typo.

Goodnight everyone! I will ask my mom to put a post party update in the guestbook tomorrow night when she gets home. The girl is getting solumedrol and IVIG this week so that makes for longgg days.

All our love,
Connie & Madeleine

Thursday, April 28, 2005 10:03 PM CDT

The aliens have taken Madeleine and left a pod child for us to deal with. They better bring her back soon!!
UGH!
She started off the morning before 7am begging for chicken and dumplings. Breakfast is Terry's thing so I let him handle it. Of course, he slaved over the hot stove making it for her and served it up in the correct bowl....but, it did not look right. I got up then and went to Albertson's (still in my pajamas) and bought what we needed to make more. Then I tried the next batch, still did not look right. They look fine to me!!
I drew the line and did not make more and she did not seem to care by then.
She really spent most of today laying on or against my bed and groaning about how bad she felt. "I feel so bad. DO NOT call the doctor. They will make me take more medicine."
I told her that if it got worse we were going to call and then she would not talk to me for a while. It is the same stomach ache that she gets after solu-medrol - but, if she does not start to feeling better tomorrow I am going to phone the docs and see what they think.
She is just miserable all over so I am not sure what we can do but wait for it to move on out of her system. I shudder to think how she will feel next week. yikes!

The week started off pretty good and Madeleine had fun playing with Brianna and the girls in Child Life. By Tuesday afternoon the solu-medrol had her feeling bad and she spent more time in bed. We could not coax her to play bingo with the volunteers Tues. night. Usually she is all over playing bingo for prizes and she did go up in a wagon for a few minutes. We had to lay her down with pillows and blankets and she only stayed about 5 minutes before wanting to go back to bed. The mood swings were keeping us all on our toes by then too!

Some MMQ's from the last few days:

"Mom, I'm getting traumatized by this word find."

It was time to get up and get dressed "...I'm too tired for this please leave me a message and I will get back to you.."

"That Count Olaf is crazy and makes no sense."
She was watching A Series of Unfortunate Events tonight and loved it. The girl loved Sunny!

A quick thanks to Lise and to Amy for your donations to the Child Life dept. You guys are awesome and we all appreciate it!

There is big stuff happening on Monday - if you have not heard about it yet then tune in over the weekend and I will give details!

xxxooo-
Connie & Madeleine

Sunday, April 24, 2005 9:58 PM CDT

It is a typical Sunday night here in Camp Chaos. Madeleine is finally in bed, Little Willie is sad and pouting, and I don't have our junk ready for the hospital in the morning.

In all this week Madeleine has seemed about the same - not really much better but, no worse. She woke up this morning at 5 something with pain in her legs. That always worries me quite a bit. There was definitely active disease when that was happening before. It makes me wonder where we are now. Especially since she is still having the pain in her jaws too. Her MRI on May 16 should answer that question I guess.

Tomorrow through Wednesday she gets solumedrol. Madeleine said today that she does not like getting it and that she would rather get something else. I told her this was not the kind of thing that she could pick what she gets. She did not look very convinced and I bet she will quiz her doctor tomorrow to see if there is something else she can have. Perhaps something that comes in pink??
Just wait until she finds out that she is getting both solumedrol and IVIG together next week. Fun fun fun. I am going to need a vacation for sure!

Thanks for checking in and as always, if you are in the neighborhood please stop in.

All our love,
Connie & Madeleine

Thursday, April 21, 2005 10:05 PM CDT

Each week seems to just fly! We wake up and it's already Friday and then before we know it we will be back on our way to the hospital.

Someone asked in the guestbook recently about Madeleine getting her IV meds at home.
No, unfortunately she was never able to get hers with home nursing. We attempted it early last year during her first treatments and ended up at Children's ER late one night. Her b/p went very high and must be monitored closely when she gets her infusions. Because of that the drugs are given at a very slow rate - making it take hours to get them done. On days that she gets solumedrol it's given over 4 hours and her IVIG takes close to 5 sometimes. That is, if her b/p does not go over 140/90. At that point they have to stop the infusion and wait. If it does not come down on its own in a certain amount of time, they have to call a doctor. A few months ago we were stopping it at 130/80 and then the docs raised it a little at a time for some reason.
If she gets both solumedrol and IVIG the same day - that is a longggg time. Too long for home healthcare. In addition to that we are about an hour from a hospital like Children's and that would be the best place for her if she got into trouble with an unstable b/p. Sure, we have a hospital within 30 minutes but it is not a facility that specializes in pediatrics.

This week they gave her IVIG at bedtime and it worked much better than trying it during the day. She was more comfortable and did not get nauseated or she slept through it.

Madeleine and Brianna had a ball visiting with new friends Cleo and Emily. They both stopped in to say hello after appointments. Then we were thrilled that our friend Kaylee and her mom could get by for a quick visit on Wednesday before we headed home too.

I am certain that we are seeing some improvements in some areas. She is still having pain and spends quite a bit of time resting. We are always reminded by the docs and PT that it is so important for her not to get so worn out. Fatigue and sun exposure allow this disease to worsen and just causes setbacks. It is not easy to convince a 5 year old that she needs to slow down and not play so hard. On Monday she was hopping around and dancing with the girls in Child Life. She and Bri were all over the place playing so hard and we were so pleased to see them feeling good. Then at 2:30 am Madeleine was awake with pain in her legs and feet. She woke up very stiff and was slow to get moving. After food and some rest she was wearing a path between her room and Bri's. They did all sorts of medical procedures on their animals again and they colored pictures while I pulled them around in the wagon. We did not have any problem finding them because they were constantly singing "Little Sally Walker walking down the street....." over and over and OVER. My mom had taken them to do something and I was trying to catch up but stopped for a minute and they were gone. I went out to the bridge and I could hear their little voices singing "...didn't know what to do so she stopped in front of me...." they were 3 floors below me in the atrium.

She was full of funny little comments when her mood was good. We had a couple of meltdowns but only one real doozy.
I have a few very good MMQ's from the week that I saved -

"Oh, look Mom. These birds sure have been artistic - look at the nice designs they made."
Well, that came as we were going into the building early Monday morning. Flocks of pigeons live in the garage at TSRH outside the C level doors - that is because of the never ending flow of popcorn from the lobby. It looked like some had been feasting right on the sidewalk and Madeleine found it interesting.

"Excuse me?? I'm not going to listen to that crazy talk!"
I told her to stay in the exam room and not to go off since the Dr was about to some in. She was very angry at me but luck was on my side because just as she said that the Dr walked in. It earned me a very mean glare but she got over it. She had been watching for Bri to arrive and was more interested in that than "business".

"Yeah, it's because I had the biggest fit."
This was the answer she gave when her nurse asked why she did not have the complete dose of her b/p medicine Monday morning. It was because she had an issue with me and spit most of it back on both of us.
Her nurse held back a laugh and asked why she did that -
Madeleine shrugged and said "I did not want to take it."
We worked on this with Cinda and I hope she is going to be more cooperative with her oral meds.

"Hmmm...that's how kids are, you know?"

"Hey Bri, let's take him. He looks like he needs to get fixed."
The girls were selecting what beanies to play hospital with. Madeleine grabbed a puppy and made that comment. I had just taken a big drink and just about choked laughing.

"Mom, would you please cut my pancakes? They are being stubborn for me."

When she woke up this morning I commented on how nice it was that she slept in. Then I asked her how long she had been up and she said "oh, about 24 hours."

Today we stopped in at Ceramic Antics to visit and paint some stuff. Sarah was out with an injury but we hope she is feeling better soon! Beverly and the shop kitty seemed glad to see us so we caught up and had some fun. While we were there we found out that Madeleine was in the Mansfield paper last week. WOW! I sent Terry over to the newspaper office to see if they had some copies we could get since we missed it. The article is so nice and they included 3 gorgeous color photos of Madeleine and Cinda. WOW!

I spoke to Kim (Brianna's mom) this evening and Bri is not feeling well at all. They called and the doctor asked her to bring Bri to the clinic in the morning. It looks like she is having a reaction from her IVIG but they will find out more in the morning. I hope she will feel better tomorrow. Please be thinking of them and send some warm healing thoughts their way.

Thank you for checking in on our girl.
We love you all,
Connie & Madeleine

Sunday, April 17, 2005 11:10 PM CDT

It's a typical Sunday night here in Camp Chaos. Madeleine and I have our stuff packed and most of it is already loaded up. She has placed her breakfast order - donut holes and then chicken bites from Chick Fil A. I guess we can get all that and then drive to Dallas to be on time at 7:45 in the morning. Remember gentle readers, I am NOT a morning person.
This week is IVIG and we are going to infuse it while she sleeps. Last time when we did it earlier in the day she was nauseated and her head was pounding. Before that we had always done it at night so she sleeps off all those side effects.

I noticed she was holding her jaw this afternoon but I did not ask. Later she asked for Tylenol because it was hurting.

In all Madeleine had a very nice day just playing by herself. She played loads of computer games and enjoyed dumping Polly stuff out all over my bed. It was nice for her to sit and play and I believe she must be feeling better or she would have demanded I join her. When she is feeling crummy she is so high maintenance.

I added a photo above of Madeleine with the Russian circus poodles. She has been trying to get Willie to jump through a hoop...so far I am the only one she has trained to do it.
hahaha

Remember to drop me a note if you want a Madeleine bracelet.
They are 5.00 including postage with half going to purchase the Snoezelen for the Child Life Dept at TSRH. I have all the details in the last journal entry.

Please include the size med or lg adult - or child's. Make sure to include where you want it mailed to. The address is:
P.O. Box 1344
Mansfield, TX 76063

If you have any questions please drop me an e-mail. I may not be able to check my mail until sometime on Wednesday so please be patient - I promise I will get back to you.

Thanks for checking in on our girl. All the love and support mean so much to us and especially to Madeleine.

all our love,
Connie & Madeleine

Friday, April 15, 2005 10:24 PM CDT

What? You mean it's Friday?
I cannot believe that we have the weekend and then back to the hospital for our early morning date Monday with the doc's and admission for IVIg.

Madeleine had a pretty good week in all. She has continued to have pain but nothing awful. Her mood swings have not been too bad - she has them but we have been able to work through it with little or no bloodshed. (I am kidding!!)
At the hospital she enjoyed being with Tank and Bri. They played so much and were so funny at times. On Tuesday all three of them were in Madeleine's room playing hospital. They had piles of syringes that were left from flushing Madeleine's line and Bri's IV. All three had their beanie babies wrapped in various bandages with tiny baby sized blood pressure cuffs. There was a lot of IV starts, pulsing, surgeries, and vitals taken. These kids were busy! Then Tank was trying to fashion an Ilizarov on the leg of his beanie bear - that had us laughing so hard! These kids are so medical savvy! Madeleine already has plans for playing that again this next week.
I will leave out the parts where Madeleine and Brianna got into a tug of war argument over a blood pressure cuff - we were able to turn things around before it got too bad. With two girls that are getting high doses of solumedrol and if both have an issue at the same time - hoo boy, you better just bail out! Thankfully they usually trade the moody moments back and forth and it seldom gets them both going at the same time.

On Wednesday afternoon Madeleine and Bri were getting their 3rd dose of solumedrol and playing in Bri's room. They were sort of racing but Madeleine's infusion goes 4 hours - Brianna's is 90 minutes. Madeleine's had started way before Bri's so they were not far apart in finishing but it was funny listening to them follow the numbers on their pumps. They both had the same Polly cars that were in their welcome bags from Child Life and while the grownups were visiting we overheard them playing funeral. Since they both recently lost loved ones I guess it was on their minds. Madeleine's Polly had just lost her great-grandmother and Bri's Polly lost her grandfather so they were getting ready for the funerals and driving to the funeral homes when Bri's took a wrong turn or something and it was stressful - I dunno but they were so funny. These kids are amazing and they think they have everything all figured out.

I know there are loads of things I wanted to report in on but of course I came home so exhausted on Wednesday evening that I cannot recall everything. We made it home at dinner time and Madeleine had her Taco Grill rice. Before long the folks there are just going to hand me the container of it without me ordering it first. She is so predictable when it comes to her food!

Lilo kitty is fitting in nicely and my scratches are healing thanks to good antibiotics and ointment. She is Little Willie's current favorite. He cannot leave her alone and she rolls over on her back when she sees him. She mews when he licks her ears and face - nutty pets!!
The other cats are still keeping a distance but get a little bit closer each day.

It was nice to get back home and crawl into our own beds - of course we had to be up early Thursday and go back to TSRH for Madeleine's eye appt. They check her out every 3 months for any changes from the medications. When we were sitting in the waiting room she asked me if Cinda was coming to her appt in the most pathetic little voice. I phoned and Cinda was able to come down and chat with her while she waited and then when we went in to test her vision Cinda was who she wanted by her side. These two are so good together!
When we went into the exam room Madeleine was eating this big cone of chocolate frozen yogurt. She ate some and then had Terry eat the rest "..but, not the cone!". She was just working on munching the cone when Dr. Packwood came in. He did part of the exam while she was eating then he sat her cone on a napkin while he finished up. When he handed her cone back she tilted it and melted chocolate gunk poured down the front of her shirt. He was so sweet and attempted to clean her up. He ended up wiping it around to make it look more artistic rather than a stain. This was our first time to see him and we all loved him!

Last night we went to Mom's to grill dinner. I ran to the grocery store to grab a few items and when I came back I managed to fall flat on my face on the sidewalk. It was not pretty.
I am so glad I had enough sense about me to raise my purse and my face landed on it. That cushioned my head and probably saved a few teeth as well. My knees did not come out so well. My right knee (the one that has degenerative joint disease and doctors have nagged me to replace for years) took a big hit. I am not bending it much because it does not want to bend. When I do bend it is so painful that I just about black out. Oh well, I am going to be very careful with it and maybe in a few or 10 years I will entertain the idea of getting replacement done. I did go to the ER but left after waiting several hours and finding out it would be at least a couple more hours before they could try and get me back. Then there would be a wait for radiology. I passed and went home with an ice pack they gave me because they felt bad I could not wait. It is more important to me that I take care of Madeleine. I plan on worrying about the other stuff later on.

Today we went to Medical Y (aka Y Medical) for Tricia there to check Madeleine's picc line. Last week her skin was looking so bad under the catheter but today it is looking much better. There are still some angry places but the bruising is gone. She lays so still when we work on her line that it amazes me to think she is just 5 yet she understands she needs to be still.

I have a handful of MMQ's from this past week:

"All of your junk is just so uncool, Mom"

"I cannot be around anyone with a fever since my immune system is being depressed."

Through her mask as she watched her dressing change..
"...are you going to change the securement device?"

When she told her Dad to load up one of her little shopping carts to bring home from my mom's he asked her - how many shopping carts do you need little girl?
She said "25" and turned and walked off. It was very matter of fact and very funny the way she told him.

She was playing in the backroom at my mom's when I told her it was time to go home - she said "...but, Mom - I am playing so sweetly."

Asking about Little Willie -
"What is my little boy doing?"

While working on her chocolate frozen yogurt -
"This is a good year to eat ice cream."

When we arrived Thursday for eye clinic there was a large group of professional looking folks leaving. We waited while they all crossed the street. I commented that there must be a seminar going on or maybe they just took a tour. Madeleine says -
"I hope they are donating money because my hospital needs more money so they can keep helping kids like me and Bri. Tank too - especially Tank, he needs my hospital too."

Speaking of money....before I head out tonight I want to ask some favors. My family purchased some of those awareness band bracelets. They glow in the dark and have "Madeleine" on them. We are selling them for $5.00; this includes postage to you. Half of the money pays for the bracelet and half goes to the TSRH Child Life Dept. I want them to be able to purchase a Snoezelen.
It is a wonderful piece of equipment and our hospital needs it! A Snoezelen can create an environment of fascinating visual displays that surround and absorb. Gentle vibrations soothe and relax the body while colorful objects beckon to be touched. You just have to see this to believe it. I read an article where Leafs player Mats Sundin bought one for a children's hospital in Toronto and it made me determined to find a way for TSRH to have one too.
The cost is not huge and I hope that we will be able to raise the funds for it. If you would like more info on the Snoezelen please e-mail me and I will be happy to fill you in on it. If you would like to donate towards it and do not want bracelets then please make the check out to Child Life Dept at TSRH.
I will be happy to deliver it in person for you or you are welcome to mail it to the hospital with ATTN: Cinda McDonald in the address. They will send you a letter acknowledging your donation if I deliver it or if you mail it.

If you want a Madeleine bracelet then send your $5.00 to us at:
Madeleine Bracelet
P.O. Box 1344
Mansfield, TX 76063

Be sure you include the return address with payment so that I can get it back in the mail as soon as possible. Also, we have 3 sizes - med or large adult - or child sized. Let me know which you want.

We have lots of fun things coming up in the next few weeks and I will fill you in when I can.

Thanks to everyone for checking in on our Madeleine. We appreciate you all more than we can ever let you know.

Thanks Tina and Lance - Mad loves the poodle and your cards are so sweet.

Thanks Angel Jen for all the fun goodies!

Thanks Lise for the Hawaiian care package. Madeleine sighed blissfully when she opened her outfit - it's PINK she squealed! The soaps smell so good that she and I did not know which to try first. They are perfect because they are gentle and do not irritate her sensitive skin. I told her she had to share with me and she just gave me a little smile.

All our love,
Connie and Madeleine

Sunday, April 10, 2005 9:47 PM CDT

Did you ever agree to something and then later wonder if you need your head examined?
That is my day in a nutshell.

Before I tell my story let me fill you in on the latest Madeleine news.
Her bags are bulging with books, markers, crayons, gameboy & loads of games,
various stuff poodles, and Baby Elvis. She is ready for tomorrow! How many hospitals do you know of that kids look forward to being a patient in? All day she has chattered on about what Tank has been doing while she was gone - and about what she and Bri can do tomorrow.
Is she any better? Sometimes I think so but then she will complain again of neck pain or the pain when she is chewing and that worries me. These are areas that she did not complain about until the past month or so. She still fatigues easily and I notice her taking more time resting. Not seeing instant signs of improvement makes me crazy but I am learning to have more patience...

So...William got a cat last year and it lived at Greg's house with him. William loves it and enjoyed visiting her when he is over there. Greg phoned Saturday morning and asked me if she could come live with us. GULP! OK - sure, I think we can do that? Let's see here...Andrew has 2 black cats (Hully & Sami) and Madeleine has her black poodle (Little Willie)..what is one more pet, right? He said that he needed me to take it so that it would not have to go live outside the family because he could not keep her any longer. William was thrilled at having his Lilo come live with us. It is sounding better, right?
I told Greg that to seal the deal he needed to make a donation to the Child Life Dept. at Texas Scottish Rite Hospital for Children or get his employer to do it. (If you know Greg please remind him for me to make sure this happens!)
We agreed that on Sunday when I met him to get William then we would get Lilo too.

(Almost) Everyone was excited today when we went to get William and Lilo. Lilo is about 18 mos. old and she is a blue point Siamese - she is gorgeous. Madeleine and Little Willie were eager to get a glimpse of the new kitty. Before we got there Little Willie puked in the front passenger seat of my truck. I never heard it but I looked over and thought "oh, good".
Andrew was no help since he started gagging when I said Little Willie puked. Just the word "puke" sends him into a frenzy. I manage somehow to keep driving and wipe that mess up.
Lilo was in her crate and I set it in the front seat. Willie was going nuts to check her out. He was thrilled to see a new friend. She just sat there looking bored and fell to sleep on the way back home.
Back home is where all the fun really started. I took her out of the crate with all 3 kids shouting and Little Willie barking. Welcome to your new home, Lilo.
She starts hissing, spitting, and clawing.
Little Willie tried to welcome her and she went a wee bit crazy and swiped at him. He started yelping and carrying on..(it all goes downhill from here)..then Madeleine shrieks and starts crying - she thinks her poodle has been wounded. Hello!! I am the one bleeding - not Willie!! William is yelling at me because I did not just sit the cat down and call her to come to me. I swear! I don't know what the heck he was thinking but he was freaking out. Andrew is yelling because Madeleine is crying and William is yelling. He is trying to hold Little Willie - who, by the way, is still barking. So, all 3 kids are yelling and/or crying and I am the only one getting clawed and bleeding. Madeleine starts shoving Andrew to get to Little Willie because she is still crying that he is hurt and Andrew won't give him to her. William is just yelling and I don't know what about other than just because Andrew and Madeleine were yelling...can you tell that this is the moment that I am wondering why I agreed to this?
ARGH!!
Madeleine finally takes a big breath and shoves Andrew. He moves and she grabs Little Willie. I was trying to convince her that he was ok and was not hurt a bit.
Keep in mind, gentle readers, that I am still trying to not get bit or clawed. Lilo was not wanting to get away! She was clinging to me - I was wishing she would run under the bed or something - but, noooooo. She was not leaving my lap.
After the chaos started to calm down Madeleine comes up to Lilo and sticks out her finger and says:

The first of the MMQ's for tonight -

"Get out of the way, Andrew, and let me talk to that CAT!
Now, Lilo - here are the rules!!
1. Do not claw my poodle
2. Do not bite my poodle
3. Do not be mean to MY poodle!!

She actually numbered them with one hand on her hip and the other shaking a finger at Lilo.
Lilo just looked bored while Andrew and William started yelling again.
Things started to go a little crazy again and Madeleine jumps on the bed and covers herself in pillows shouting:
(MMQ!)
"Turn that dog off MOM!!
Willie was barking again...I still haven't found the off switch.

Since Madeleine was starting to wig out again I was able to get Andrew and William to go find something else to do. She got quiet and started playing with some toys and Little Willie was content just to lay and watch Lilo. Lilo was laying on a towel in my lap to keep her from clawing me more. After a little bit I got her to get down on the floor and she ran into the bathroom and hid behind the door. No problem, right? Nope..not until I hear her wretching and she projectile vomited up the wall. UGH! This just gets better folks, I promise.
Little Willie was very interested in all this so I had to hold him back and clean up the cat puke. Madeleine wanted to know what I was doing and when I told her she says:

"Wait Mom!! I want to see - what color is it??" (another MMQ!)

Ugh.
I put Lilo back on the towel in my lap and she is happy. She is a lap cat and seems to love being held. After probably 30 minutes Little Willie starts sniffing the towel. For some reason he is very intersted in the towel and he was burrowing his snout into it. I kept shooing him back because by now I am done with being clawed. My hands have swollen places that are still oozing blood. I adjust Lilo and when I moved her guess what tumbles out?
Oh, yeah. Poop. Ugh!
Poop just tumbled right out on me and my bed. (I am thinking that donation to the Child Life Dept. at Texas Scottish Rite Hospital for Children just doubled...)
That set off a new round of yelling from Madeleine and had Andrew gagging.
How on earth could one smallish cat cause so much chaos??

I cleaned up that ordeal and phoned Terry at work to let him know that he was picking up takeout on his way home. Dinner was on him since I was done!

Things are more peaceful this evening and Lilo will run back to her crate when she feels anxious. We have left the crate on our bed with the door open and she can go in and out as she wants. She sniffs Little Willie and he goes nuts - he wants to play with her so bad!
The other cats are keeping a distance so far. When we brought Little Willie home Sami spent weeks on a shelf in Andrew's room before he would come out. Andrew had to take food and water and put it on the shelf for him. Hopefully it will not come to that again.
In any event, I am heading to the hospital with Madeleine for the next 3 days so I will leave all this for Andrew and Terry to worry about!! ha ha!!

I hope Madeleine feels good the next few days so that she can enjoy playing with her friends at the hospital. Cinda is going to work with her on pill swallowing and there will be loads of activities going on as usual.

I will ask my mom to update in the guestbook tomorrow night to report in on how Madeleine is doing and about clinic. Thanks so much for being a part of our lives.

Here are the last MMQ's for now:

"Lilo, Little Willie can be a little bit moody at times...but, that is ok and you just have to deal with it!"

to Terry when he was not doing what she wanted:
"You be sure and drink some Nicely's Nicequik because that will make you nicer."
We are not clear on what that is and she is not telling us.

All our love,
Connie & Madeleine

Saturday, April 9, 2005 9:05 PM CDT

It feels like the weeks are flying by!
Monday will be week 3 of weekly treatment and it will be 3 days of solumedrol pulsing.
Madeleine is still complaining of pain in her jaws and last night her right leg was bothering her - again. She complains of the area of her calf down to her ankle and it is mostly with her right leg.
I probably should not mention that she has been sleeping a little better the past couple of nights.
On Friday morning she did not get up until almost 10 am - it was so strange but she needed the rest. She was in a panic because we usually flush her line at 8 am. It was all fine but you cannot reason with her at times. I was just thrilled that she slept so well!

That afternoon we went over to Medical Y (Y Medical) and she had her fav nurse change the dressing on her line. They changed the stat lock for me since it would need to be changed next week. The nurse asked her if she could just steri strip it in place to let her skin rest but Madeleine was not willing to allow that. Her skin under the catheter was so bruised and angry looking. Tricia rearranged where the catheter is laying for this week so that her skin under it can heal a little. It looked so sore! The stat lock feels more secure to Madeleine and she worries about pulling it loose - I think that is why she refused to try it with just steri strips for a few days.

We are staying close to home this weekend with no big plans. It is giving us a chance to rest some and do laundry before Monday morning.
Brianna will also be in clinic Monday and another little girl with JDM will be there too.

A few MMQ's:

"I cannot believe I got up in the 9's!"
Her comment when she realized that she slept until 9:50 on Friday morning.

"That boy is a crumble crunk and he never listens!"
this was directed at her dad when he took the dog to the door before getting her out of the truck.

"Are you going to keep playing around or are you going to get me OUT?"
This was to me when I was sitting here trying to figure out what a crumble crunk is.

"Not NO but super NO!"
I don't think she was saying no to anything in particular.

"STU...."
To Andrew but stopping short of calling him stupid because that would have cost her.

"You are stuppy!"
Another of her favorite names for Andrew.

I hope everyone is having a great weekend.
love,
Connie & Madeleine

Wednesday, April 6, 2005 10:06 PM CDT

I have so much to tell but so little energy tonight.

First of all Madeleine is doing well. Our clinic visit was quick since we needed to get to the funeral but she had just been seen the week before. Since we have a plan for the coming weeks there was not much to go over. Everything is about the same as it was a week ago.
We got her IVIG started late that evening so that meant it was late on Tues. Madeleine usually goes to sleep when they put the benadryl through her line to premedicate her so we called it a night. It was easier to just get up this morning and come home after she played with the therapy dogs. They visit the Child Life playroom every Wednesday morning and Madeleine looks forward to seeing them. She has had awful stomach pains yesterday and today - they turned out to be potty issues and hopefully that is going to be better soon. These drugs really mess up her system. She was tired and moody as we were getting closer to home this afternoon - "..are we almost there yet??" was what she asked me over and over. Finally she got busy with her gameboy and chilled out. Tonight it was a bit of a battle to get her into bed but she is there without any bloodshed.
She was very busy while at the hospital. In fact yesterday she worked as a nursing assistant. Our nurse had her tagging along most of the afternoon working with her and cheering up patients that needed it. She was too funny and when Brianna got back from an appointment she joined in and they both helped out cheering up anyone that needed it.

My grandmother's funeral on Monday was beautiful. She would have been so pleased, I think. We all arrived early to spend some time with her before the service. She looked so beautiful and peaceful. Madeleine had asked over and over if I was sure that it would just look like she was sleeping...she was so cute when she whispered to me that I was right - she does look like she is sleeping. Madeleine and William had drawings they wanted to place in with her. It was interesting how concerned Madeleine was with what my grandmother was going to wear and with the flowers. It seemed to very important to her and thankfully she approved of it all. During the service my cousin's mother in law sang the Lord's Prayer and another beautiful song. We had her service at the graveside and Barbara's soothing voice was just perfect. Andrew read a poem and it made me so proud. Then my tiny girl got up and recited a poem. Earlier that day she had heard me mention to someone that Andrew was going to be reading one and she quietly asked me if she could too. I asked what poem did she have in mind and she told me that she had one - "...don't worry I know what I am doing mom.."
Well, she knew what she was doing and it was just so sweet. She only composed a few simple lines but it was just so huge coming from my tiny girl. My cousin's son, Aaron, who is 7, got up and said some very special things - he looked like a little man standing there speaking.
The children speaking at the service made it all so special. I had so much that I wanted to say but it was so hard. I told a story from when my aunt Pat was a teenager and I was small. A mouse had run through the bedroom and we both jumped up on the bed screaming. My grandmother calmly yanked the mouse up by its tail and with a flip of her wrist tossed it into the toilet and flushed. We have laughed many years over that and I wanted us all to laugh about it again with her.
I am so thankful for all the laughter over the years we shared. She was very funny and had a wonderful sense of humor. On Saturday afternoon Mom and I sorted through some of her things and there were plenty of laughs. I found a drawing she and Andrew had made when Andrew was little. I cannot believe she kept it tucked away. We would open a purse and find all sorts of surprises inside.

I am going to do my best to get to bed early. Madeleine and I both could use one good night's rest to get us back on track.
There were several MMQ's from the last few days - I will close with a few:

At the cemetery the boys were pallbearers. William was making faces as he carried the casket. You would have thought he was carrying 10,000 lbs! Madeleine looks at me and rolls her eyes saying "Men can be so ridiculous!"

"I bet your old poodle was so happy to see your grandmother!"

"Mom, I am pretty sure that you are NOT twenty-something like you told me!"

Her poem for Maw Maw:
Roses are red
violets are blue
I love you and
you love me too.

All our love,
Connie & Madeleine

Sunday, April 3, 2005 9:51 PM CDT

Thank you all for the messages and e-mails. We are doing ok.
The plan tomorrow is to get Madeleine through clinic and labs in the morning and get admitted. Then we can head over to the cemetery for my grandmother's funeral.
Afterwards I will have to get Madeleine back over to TSRH so that we can get her IVIg going. Up until now we have run the infusion at night after she is in bed - that way she slept off any headache and nausea. We will see how all that goes tomorrow. If anyone will be in the neighborhood please stop in and visit us.

Madeleine is pretty moody this evening. She was not very pleasant when we were trying to take care of last minute details. Now she is in bed but calling for one thing or another every few minutes. The battle will probably end in my bed later on.
She has had lots of questions about tomorrow. I was quizzed on what my grandmother will be wearing. Then I was told that there must be pink flowers - a MUST!
When we were at the cemetery earlier today she demanded to see Maw Maw again. We explained that she would have to wait until tomorrow. This evening she was talking about Little Willie being there tomorrow. I had to tell her that Little Willie cannot go tomorrow but we will take him over there as soon as we can. She did not want to give in on this one but I finally convinced her. "But Little Willie loves Maw Maw too!"

This afternoon Cinda at TSRH met with Madeleine and William to talk about the funeral. Then she read them a beautiful story called What's Heaven? by Maria Shriver. I will never be able to thank Cinda enough for all that she does for my children.

Goodnight and we love you all,
Connie & Madeleine

Friday, April 1, 2005 11:35 PM CST

Sometimes I am so amazed by the wisdom that my tiny girl possesses.

This evening my grandmother, Annie, passed away peacefully. She lived a full and wonderful 89 years. We were just with her on Sunday for Easter and there was no indication that this was coming. She was happy and seemed to be doing fine when we were there.
From what we can gather she indicated to her aide that she was not feeling well. When they came back into her room she was unconscious.

At home we had just loaded up William, Madeleine and Little Willie for a drive over to Dallas. Heather from TSRH had called me and said that the article on Madeleine and Brianna was out in the Turtle Creek News and that it was super. Mom and I could not wait until Monday to see it - so we were heading out to go get a copy or 50 copies. The nursing home phoned when mom was just walking out the door. They told her that my grandmother was having problems and they were calling the Dr about transporting her to the hospital.
Everything started happening from there. We were just pulling out of the driveway and headed towards Euless where her nursing home is located. Between mom and I we called my Aunt Pat and Terry to get everyone into place.
We arrived at the hospital just before the ambulance with my grandmother did.
The emergency staff at Harris Methodist HEB are the most compassionate and professional group one could ask for. One of the doctors ran out and told me that I needed to go inside with my mom and grandmother. He volunteered to stay in my truck with Madeleine, William, and Little Willie. Thank goodness we had the DVD player because they watched it and had snacks while I was able to be inside. Everything happened so quickly - she was so tired.
Her nurse was just so good to us. We could not have asked for better care this evening.
Terry and Andrew arrived and took over Madeleine and Little Willie for us. By then she was gone and the kids were asking about her.
Madeleine asked "How is Maw Maw? Is she ok?" I told her yes, she is ok. Then I told her that she had died. Madeleine made a little gasp and with huge eyes launched into all these thoughts
"She can fly now! She is an angel. She can walk and run and she will be with Elvis!"
Elvis is our dog that died a little over a year ago.
From there Madeleine demanded to see her. She had no business going into a hospital with all the germs but if that is what she wanted I was not going to deny that. Luck was on my side because she quickly changed her mind and was ok with just going home.
Madeleine was so serene. She told me that my grandfather must have been so excited to see Maw Maw. Yes baby, I am sure he was very excited to see her today.
She must have been needed elsewhere but we are all going to miss her tremendously here.

I am so proud of my three children. The boys came inside with me and stayed while Terry took Madeleine home to bed. We waited at Maw Maw's side until the funeral director arrived.
It all really feels like a dream still.

Madeleine is doing well today. She went to school for a little over an hour and loved seeing Mrs. K and all her friends there. It was so good for her to have a little bit of normal today.

Thank you for checking in on us tonight.
All our love,
Connie & Madeleine

Thursday, March 31, 2005 9:18 PM CST

I am so thankful that next week is IVIg and not solumedrol. There is a big difference in our little prednisone princess today - yike!
She was awake at 6:30 this morning and wanting food. At that point I knew it would be a long day...and it was. She was very crabby most of the time and looks very puffy. Her eyes are tired and she has no patience. I know she feels miserable when all she can do at times is scream or shriek.

We went by Y Medical for one of the nurses to just take a look at her picc line. Yesterday before leaving TSRH I changed the dressing while Cinda and Madeleine talked - wouldn't you know that the securement device had to be changed? Luck was on our side that I had one with us and put the new one in place. It makes me so nervous to have to move the catheter around! I felt better letting them take a look today just to be sure that I did everything correctly - we need that line to stay healthy and working for several more weeks.
They told me it was fine so I was able to worry a little less. :) We picked up a few supplies and headed for our next stop.
Madeleine had some Easter money and she wanted to hit Build A Bear. We took her in her wheelchair since it is not close to the doors at the mall and that made it much easier for her. It did not take too long for her to decide on the new (limited edition lol) lamb. Her name is Madeleine5 and is tucked into bed with her tonight. After a quick ride on the carousel we were out of there. When we were leaving the parking lot Madeleine commented on how tired she was from our busy day. Y Medical and BAB was her limit for today I guess...BAB alone wipes me out!!

The MMQ's tonight are short and not very sweet. Our precious witty Madeleine needs to get back on track soon because these are the highlights from today:
"I'm HUNGRY!" what do you want to eat? "..something..."
"..you can't say that..."
"..don't look at me..."
"...you have to feed me because I am your CHILD!!"
"...hello, I need food...."
"...I don't take pepcid anymore I take prevacid MOM...and don't even think about giving it to me before my norvasc!"

I promise we are feeding her. She alternates between being stuffed one minute to being starved the next. This kid really eats like a bird...not a flock of birds!

I have been meaning to mention that we received our blue Cure JM bands in the mail recently. For information on those please drop me a note or check out www.curejm.com.
I have had so many people ask me about mine since I put it on the day it arrived! Help us get the word out about this disease. One day soon there must be a cure available so that Madeleine, Brianna and thousands of other children will not have to suffer any longer from the pain of this disease.

Tomorrow I am getting a little break to run and get my hair done. When I walk out of Kym's I will be a new girl and ready to take on the world again!

G'night everyone. Thank you for being here with us on this journey.
All our love,
Connie & Madeleine

Wednesday, March 30, 2005 8:59 PM CST

I do not remember feeling more tired than I do tonight.
We had a precious little girl next door to us in the hospital who cried during the night - both nights. She is adorable and had just been moved over from Children's ICU and I hope they will be able to soothe her tummy and help her rest better soon.

Madeleine did not rest well either. She looks exhausted and she is very weak. Getting the solumedrol again so quickly has taken it's toll on her. I hope she will be able to sleep tonight, in her own bed, and feel better in the morning. She, Tank and Brianna were inseparable most of the past 3 days. Kim and I put the girls on the counter in the infant bath area and used Madeleine's blueberry shampoo to give them a good hair wash. They loved it so much that Tank thought it was something he needed too. He asked me to do his! So, on Tues afternoon I had a nurse put him on the counter and we gave his hair a scrub. He said it felt so good that he could have went to sleep. Then he threw his arms around me to say thanks. I promised him we would do it again next week when we get there.
The girls enjoyed doing their crafts and playing games in Child Life. This time they even played the Barbie PS2 games.

Madeleine's best day was Monday. She was feeling pretty good and was full of hugs and smiles for everyone. The best part for her was the circus poodles! They were amazing!
I have not seen poodles perform like they did and everyone enjoyed them so much. We took some photos and I will get one added as soon as I regroup. Maybe someone would just wake me up on Monday morning?
I guess that would not work though unless you are willing to do our laundry and pack everything up again. :) This is going to be like that Ground Hog Day movie with Bill Murray. It is almost strange to be home and not chasing down fruit snacks from one of the vending machines..or checking to see what the volunteers have planned for tonights activity!

Madeleine was asking us to put her to bed the minute it was 8pm. She was so happy to be home tonight and was like a little rag doll when we were carrying her to bed.
Thank you for all the wonderful messages. You cannot imagine how much they mean to all of us.

I am going to get a Diet Pepsi and watch the news because I have no idea what is going on out in the world.

We love you all,
Connie & Madeleine

Sunday, March 27, 2005 8:42 PM CST

It cannot be Sunday already!!
I am so glad that I did not unpack - except to remove dirty clothes. If you have known me for very long then you know that I am NOT a morning person. Being in Dallas at 7:45 am is miserable for me but for Madeleine I would crawl there in the wee hours of the morning. If the traffic is like it usually is then it will be like crawling before we get there!

She has not complained of the spasms but is having pain when she chews. I guess I should have known something was up since she has only been eating soft foods. When I asked her about it she said that it hurts to much to chew and swallow. I have that on my list for the docs in the morning.

We all had a very nice Easter. It was peaceful and the kids had fun hiding and finding eggs. William and Madeleine took turns hiding eggs for each other. When Madeleine hid them for William he could not find them! It was so funny! We took an early dinner over to my grandmothers nursing home. She was thrilled to see the kids and Little Willie. He always tries to search through the covers on her bed for any stray food item she might have dropped. We have not told her about Madeleine's condition since her health is very fragile. She would have a hard time understanding and it has never come up. Well, today Madeleine had on short sleeves and it was impossible to miss the bandage and tubing attached to her arm. Maw Maw kept looking at her arm but did not say anything. My Aunt Pat will get to deal with that because I am betting she will ask her what that was attached to Madeleine's arm. Sorry Pat!! I love you!! You know that if she wanted to know something about you she would just wait and ask us.

Did I mention that this morning when we got up it was snowing?? Yes, snowing. When Madeleine got up at 7:15 she wanted some stuff from her favorite donut shop so I put my jacket on over my pajamas and grabbed my keys. When I raised the garage there was snow every where and huge wet flakes were falling. It was so beautiful and the girls at the donut shop were so excited and I was just glad they were focused on the snow and not my pajamas. It was all melted and gone quickly but it was a fun way to start the day.

I have one MMQ from yesterday. All 3 kids were dyeing eggs in my mothers kitchen (ha ha ha ha ha ha) and I doubt I need to describe the scene with egg dye all over the place. Madeleine kept taking eggs over to the sink and breaking the shells. She had to do it a few times before she was tired of it and decided it was more fun to dye than break.
I am so glad that Mom had asked me to pick up from stuff from the store while all this was going on. Finally Mom told them that they needed to stop acting foolish and dye their eggs.
Madeleine told her "Granny, we are just kids so we have to act foolish".
Mom was using bleach to get some of the dye off her counter tops today. She will be finding spots of color for years to come.

Check the guestbook and I will ask Mom to update tomorrow evening with details from clinic.

all our love,
Connie & Madeleine

Friday, March 25, 2005 9:36 PM CST

It's been a long day!

We did have a decent night - Madeleine slept ok and I had one of those nights where you wake up feeling disoriented with drool on your pillow. She was up way too early but it was after 5 am so I can deal with that.

She was invited to the hospital for a photo shoot and the timing was good because by this afternoon her mood was wonderful. We took a couple of changes of clothes - one was her fancy pink and black dress that has a fluffy tulle skirt. I took some photos and will try and get some up (along with ones from last week) before we head back to the hospital on Monday.
The girl was almost herself vamping for the camera and laughing over Ashley's elephant noises.
Then on the way home Madeleine cried out in pain - Mom was beside her and tried to talk to her but she was really upset. When she calmed down and was trying to tell us what happened she started screaming again. This happened a few times and it was a spasm-like pain that was sudden and intense. It was in the neck/throat area and seemed to hit her very hard. I phoned the clinic and we were about to go to Children's but decided to give it 30 minutes. I gave her Tylenol and after a little bit she said that she felt better and she wanted some spaghetti. We gave her a small bowl of spaghetti and next thing I know she is choking on a noodle. She was gagging and crying and managed to get it up but it was just one strand of spaghetti! Later when she was calmed down she said that she tried to swallow but it just did not "work". By then we were all stressed and I called and spoke to the nurses again. They called the on call Dr and we put heat on her neck and did not let her eat for an hour. What was strange was Madeleine was telling us that she needed to see the doctor - I think the choking really scared her. She was grumbling "I cannot believe they said for me NOT to eat!!" After counting down the hour she was back to eating and has been ok since. I have decided that if she has any more of those pains she is off to the ER at Children's. The last thing we need is her to aspirate and end up with pneumonia or worse. She has been refusing to have the Simply Thick in her liquids for a couple of months but that may have to change. It may take some bargaining with her but if it keeps her from getting choked up it will be worth it.

Madeleine has received so many darling Easter cards - you are all wonderful!

Donna, you and Neddie are beyond wonderful. I cannot even begin to come up with the words adequate to express how much you mean to us.

I know there is more and I will get everything caught up soon! I hope!!

Two MMQ's from this past week:
"My mood swing is now finished, MOM" You have to imagine the glare that came with that comment!
"...they do not make a medicine for cooperation..."

all our love,
Connie & Madeleine

Wednesday, March 23, 2005 9:21 PM CST

We are home - it was so odd to be leaving TSRH before dark! The last several times we were discharged it was dark and it was after bedtime when we arrived home. This evening I was able to unload our bags before dark.
We left just before 5 pm and it was just in time for the lovely Dallas traffic. Madeleine watched Shrek 2 and grumbled all the way home. When are we going to get there??
Soon.
Her belly started hurting and we were here just a few minutes when the diarrhea started. If it would have started yesterday she might have felt better today...and yesterday. She has been out of sorts since Tues around lunchtime. The mood swings were pretty bad and now that I think of it I wonder if it was just because her stomach was hurting so bad and she was not telling us. Since several people have discounted her pain she is not always willing to speak up at times. After we were home and she was having potty issues she told me that she was hurting so bad before we could get home. I bet it has been hurting since yesterday.

I want to get to bed and watch the news so I am going to just give a quick update and will fill in details tomorrow.
As my mom reported, the doctor wants to stay aggressive with Madeleine's treatments. We are going to split her meds up so that she gets 3 days of solumedrol pulsed one week - then 2 days of IVIg on alternating weeks. Starting on Monday she will be in for 3 days of solumedrol. Since she just got it the last 3 days it is going to be interesting to see what happens with her getting it back to back weeks. I may need to hide somewhere safe when the mood swings get bad.

Madeleine and Brianna had a surprise party for the Child Life Specialists at TSRH today. We have been planning it for weeks and today it all went off beautifully! It is amazing that these girls were able to keep it a secret!! We had t-shirts made for them that said "I love MY Child Life Specialist". They both stood on Madeleine's IV pole and we pushed them into the playroom with a bundle of red heart shaped balloons. Mom brought up a big cake that had the same design as the girls' shirts and we had photographers from the hospital media dept. as well as a local newspaper. It was great!
Later on in the afternoon we all sat down with the reporter from the newspaper and talked about our experiences at TSRH. Part of the article is going to be about a piece of equipment they need for Child Life. I cannot go into detail at the moment but when they described it to me I wanted one too!! The problem is that it is expensive - in the neighborhood of 5000.00.
It may take some time to get together enough donations for them to buy it but I hope it can be worked out. This is something that could benefit every child that comes through their doors. It sounds so relaxing - there has to be a way for them to get this!
I am sure I will talk about it more later on. :)

We want to thank all our friends at TSRH that helped us surprise the girls today. You are all wonderful and we would not be able to do all this without your support.

My girl fell asleep in the middle of my bed by 7pm tonight. After she had worked though the potty issues she crashed out. I let her rest until almost 8 then flushed her line for the night and Terry carried her down and tucked her into bed. Before she fell asleep we had filled her bowl about 3 times with Taco Grill rice and she had loved on her poodle. He was so glad to see her and after she went to sleep he kept sneaking up and would gently put his nose to her nose. He was giving her nosey like we have to him since he was a tiny pup. It was so sweet until he put his nose on her lips and went for a big smooch but I think I grabbed him in time. UGH! Madeleine said the worst thing is dog breath and she went back to sleep.
I have a couple of MMQ's I will give you tomorrow.

Thank you all for checking on our girl.
love,
Connie & Madeleine

Sunday, March 20, 2005 10:13 PM CST

Hello!
We have been enjoying beautiful weather and yesterday Mom and I took Madeleine to Home Depot to pick out flowers for her planter box. In Mom's backyard she has a planter box that would never really grow anything she put in it so one year she let Madeleine pick out anything she wanted and let her plant it. She picked the plants without considering how much sun or anything that most gardeners would fuss over. They grew beautifully and looked gorgeous! Now every spring Madeleine hits the store and selects her flowers and it has worked every time. If I had selected them they would curl up and turn brown!
We went to shop while Terry was working so she had him come and see what she selected.
I would not let her do any of this until after 5pm so that she would not getting too much sun exposure.

Madeleine does not have very much stamina still. She played this morning and then this afternoon she was tired and spent time laying around playing her gameboy. I noticed some new areas of rash on her cheeks when I was washing her hair this morning. Just some tiny little splotches of red. She has been complaining that her fingers are sore and the areas around the nailbeds are more inflamed and redder than they had been lately.
All this in time for her clinic appointment in the morning. I spoke to Kim and Brianna and they will be in the clinic too so we can pass the time together.
After we are done there we will all be going up to the 3rd floor to set up camp until Wednesday evening. If you are in the neighborhood stop in and see us!
I will ask my mom to put an update in the guestbook when she gets home tomorrow evening.

Here is a funny MMQ (memorable Madeleine quote) from Saturday:

Madeleine was dressing her Polly's and hands me a boy Polly (I don't know his name) and has me help her put some pink cropped pants on him. I was trying to force them on and mentioned to her that his boy pants would fit better. Her reply was "....it takes a really true man to wear pink, Mom...."
I looked at her for a minute because I didn't know what to say except to ask where she heard that. "...from a commercial of course..."
During the exchange she never really looked up from the Polly stuff she was working with.

I am going to go love on Little Willie - he is already stressing because of the packing.
all our love,
Connie & Madeleine

Thursday, March 17, 2005 9:39 PM CST

My little princess slept through the night and woke up rested and in a good mood. I took her over to Y Medical (they are our home healthcare nursing and supplies) to meet our nurse there at the office to take a look at her picc line. Trish is so sweet and patient - we adore her! Madeleine calls them Medical Y and she was not thrilled about going. I was told countless times on the way over there that she would not let them take her dressing off. She watched The SpongeBob Movie on her DVD and every few minutes reminded me of what she was not going to do and what was not going to be done to her.

When Trish started talking to her and taking the wrap off Madeleine laid down on the sofa and got comfy with her pillow - then she had me run back out to the truck for Baby Elvis.
I was so proud of how she was so still and cooperative. After all she told me on the way over I was not sure what to expect! One of the stitches was still holding so it had to be removed - the other one was hanging off and needed to be taken off her line. They got a suture removal kit and Madeleine wanted to see what they were doing and what was in this kit. She had a mask on so that she could watch and Trish went though everything she used and what it was for. When it came time to pull the stitch out she told Madeleine to take a deep breath and Madeleine did just as she was told. Now, if I could just get this kind of cooperation!! I cannot tell you how proud I was of her - she laid there motionless through all this and then the cleaning. It burned when they had to clean the area that had been sutured but she was still. They applied the little device that now holds the line in place and we were good to go! Madeleine got up off the sofa and said "That was not so bad!"
I have not seen 5 year olds be so still for things like that. When the boys were little and had stitches they had to be tied down in those straitjacket looking things. I hated it and they would scream and cry - look at what a difference it makes to have a Child Life Specialist work with children. I give the credit to our Child Life Specialists and the hard work they do.
While Trish was working on Madeleine I was still nearby in a chair and I just watched. I noticed Madeleine doing her deep breathing and other little things to help her when she was having discomfort. Sure it hurt at times and that chloraprep burns on tender skin, she told us it burned but never moved. I know she is a very strong and smart little girl but I was really impressed by seeing her use the techniques she had done with her CLS at the hospital.
Girls - if you are reading - I will never be able to thank you enough for all that you have taught my Madeleine. You have made her stronger and give her the knowledge to cope.
I knew you were doing good things but today I saw your work and I wish you had been there with me to see it to.

Years ago I saw children literally terrified of being dragged into the treatment room. They would be pulled in kicking and screaming. In fact I will never forget one little boy who would curse all the nurses and dr's taking in the treatment room. He would be cursing like a sailor all the way down the hall. Can you imagine how long that hallway felt to a small child being taken there for some unknown and painful procedure? This really happened but if there had been a Child Life Specialist there it would not have like that.

We left Medical Y happy and relaxed. Madeleine was toting a ziplock bag that Trish loaded up with the extra supplies they did not use. She told Madeleine that maybe she would like to care for her doll with all that stuff - gloves, tegaderms, alcohol wipes, gauze, tape etc.
Madeleine agreed and looked over at me with her eyes sparkling - I know that look. I told her NOT her poodle, the dolls. She smiled and said "No, Andrew!" and she giggled. Andrew was to watch her while I ran to the grocery store and she decided they were going to play Dr and she was going to bandage Andrew while I was gone. When she told Andrew what they were going to do he just laughed and said she could put 2 bandaids on him. I walked out the door and burst out laughing...just wait until he saw those Volkswagen sized tegaderms she planned on putting on him! Sure enough when I got back he met me at the door trying to peel off one! He was not a happy camper but Madeleine was. She told me that she had fun but that he freaked out when he saw how big the tegaderm were and would only let her put one on him. I bet William will be happy he went with Granny to work and was not here to get bandaged! Don't worry - she saved plenty for you too, William! Just wait until you get home tomorrow. :) I just might have some adhesive remover pads but you cannot tell Andrew. He might not be happy that I didn't offer him some!

All our love,
Connie & Madeleine

Wednesday, March 16, 2005 9:40 PM CST

I think every mother has had one of those moments where you hang your head and grumble sarcastically how you deserve the mother of the year award. Tonight I had one of those moments.
First let me say that the company that puts together the packs of sterile stuff you need to change picc line dressings are forgetting some important items. They need to have a little pack with a valium (for the parent doing the change), 2 extra pair of sterile gloves -instead of one pair, and how about one of those tiny bottles of vodka or diet pepsi just to take the edge off.
From the first day our nurses have been teaching me to change Madeleine's dressing myself. We are fine with that and Madeleine really prefers it and has asked me to do it given the choice of her nurse or me. I have done it several times and each time was perfect...tonight it did not go as perfect. Maybe because I am her mom I am wanting it to be too perfect?
We put our supplies out and got ready before unwrapping her arm and did all the things we usually do - no problems. She is so big and stays completely still - it's all the awesome training from her Child Life Specialist that I credit this with! I was cleaning the area and working away then I lift the line to clean underneath and the whole thing lifts - it was secured by 2 stitches - WAS. They broke loose sometime in the last few days and wouldn't you know that Madeleine was watching all this. She was so upset and started sobbing. I already had steri strips to secure it should this happen and it was not unexpected - I guess I just did not expect it to happen when we were not in the hospital. Madeleine certainly did not expect it - even though she had been told. Her quiet sobs really got to me - she was laying very still and crying her little heart out. I kept telling her it was going to be ok but she was not accepting that. I put the steri strips in place and got her dressing back on as quickly as I could so that I could sit her up and hold her. I felt like the biggest failure as a mother at that point. Why should this child have to deal with crap like this?
I know we did nothing to make the sutures come loose - they were supposed to do that. It's hard to explain and I guess it was mostly her reaction but it really got to me.
I am going to meet with our home nurse tomorrow just to double check everything and make sure I got it secured good. It flushed fine and seemed to be in place ok but I want to let the nurse look just to make us both feel better about it.
When she was all put back together she asked me if she could just go to bed. I put her in and when I shut the door I sat down and said to myself "gee, you really managed to stress the child out - you deserve the mother of the year medal for that". I wish she had not been so upset - it did not help that she was tired and has not felt that great. I cannot imagine what else I could have done but I wish I could have done something to make her feel better.
Why can't I make this all go away for her?

Madeleine was up at 1:30 this morning complaining that her legs were hurting. It took a little while to get her relaxed again and comfortable - in our bed. That means she sleeps while Terry naps and I lay there keeping the cats and Little Willie away from her.
We all managed to nap off and on the rest of the night. I wanted to get her out some today so we went up and visited at Ceramic Antics. She and I both painted cracker plates that are narrow and long. After that she was ready to come back home and get back into her pajamas.

I hope everyone has a peaceful night and that Madeleine will be able to sleep through the night without pain.
much love,
Connie & Madeleine

Monday, March 14, 2005 9:42 PM CST

We saw more of the real Madeleine today! She felt better and her mood is getting better - at least most of the time it's better. :)

Something happened today that made me feel so good. I know there are many people thinking about Madeleine and praying for her every day and I am reminded daily of the goodness that exists in our community.
Since we were in the hospital the end of last week I did not make it to pick up our mail until the post office was closed on Saturday evening. They had put a yellow card in our box telling me we had too much mail and to go to the window for it. Along with that card was another one that read "Connie come to the window please". I thought uh oh..wonder what's up? So, this morning I went in and Maxine (one of our awesome postal folks here in Mansfield) ran to the postmistress's office and came back with a big Easter basket filled with fun goodies for Madeleine. Isn't that just amazing? She showed me a pink poodle combination purse and muff that she put in it - too cute!! I mentioned that she must have been to Madeleine's Journal since she knew Madeleine loves poodles...no, she said what website? I went back to Shelly's office to tell her thanks and I gave her Madeleine's web address. What are the chances of a pink poodle showing up in an Easter Basket? Pretty good if it's Madeleine's basket I guess!
She was in the truck waiting with Terry when I carried it out - I could see her waving and getting excited when she saw me and the basket. It was perfect because she played in her goodies during the drive over to Dallas! Thank you so much Mansfield Post Office - you guys are the best!

We went over to TSRH to see Brianna and her mom - they are checked in for her pulsing and today was the Child Life St. Patrick's party. What a party it was! The girls had a ball doing crafts, eating, playing, dancing, eating, and did I mention eating? Well, Madeleine is the one that was eating - this child has been eating everything that she sees. Only a few bites, still!! She is grazing from daylight to dark. This morning she started with chicken and dumplings and she ended it with a small dish of chicken and dumplings. That was not dinner or breakfast - that was her pre-breakfast snack and her post-dinner snack!

Last Wednesday in clinic the doc's said they feel like we are definitely making progress. She is getting stronger and she did a situp for the very first time. That was so big and we were cheering her on. It happened so fast that it surprised her PT and us. Her strength was the same as the best she has ever had since they have been testing it. To me that means that we are gaining back the ground we had then lost when she slipped back. What we need is for her to be able to maintain this. Next Monday is when she checks back in for solumendrol over 3 days and IVIg for 2 again. We are supposed to discuss our plan for the next treatment and how they will start trying to taper her back down from the solumedrol again - that is when she started to slip back last year, when the tapering started. Yes, I am a wreck over it but it just has to be better this time.
Her b/p was not as stable this time during pulsing - it would go up on us when she was just sitting quietly. Then she would get agitated and it would go up even more!
We were late getting out on Friday because her medicine was late getting started because of her b/p. She gave us a hard time about taking her meds that morning and things went downhill from there. For once it was not just me that was getting the abuse - she was so stubborn about taking her meds and for once I was wondering if we would get them in her.
After that she was in a worse mood and we counted the minutes until the Child Life playroom opened. Then she just sat in a wagon pouting and grumbling. When Elizabeth, our fabulous art therapist, came in the doors she got out of the wagon and went to her. Elizabeth has a magic touch because she painted and was all smiles! I cannot wait to see our tiles we painted after they are fired - Madeleine always makes hers colorful.

It felt so good to get into my own bed Friday night but I am not sure I slept much. I think I laid there worrying most of the night. Then Saturday morning we had another big scene over her meds. She and I had a major standoff over it all and she ended up spitting most of her Norvasc (the b/p drug that she needed!) and Pepcid all over the place. There was no way to know how much she swallowed so there was nothing I could do but clean up and move on. I got to say "I told you so" later on because she did feel crummy all afternoon. I tried to explain to her that getting so mad and throwing the fits just makes her b/p go higher and wears her out. Who knows if she really accepted what I was saying but Sunday morning she lined her drugs up the way she wanted them and took them in the order she wanted. She acted like it was no big deal and just smiled at me. When she walked off I thanked her for being such a big girl - she turned and said "Mom, if I don't take my medicine I will feel bad - DUH".
Maybe she did listen a little....
I do have a MMQ from Saturday morning that gave even me pause. I had warmed her a bowl of chicken and dumplings and she had a spoonful and quietly told me "these chicken and dumplings are damned cold". Andrew stopped in the middle of what he was saying and fell over snickering. I was not amused and told her that I would have to spank Andrew if she continued to use that kind of language. She looked at me with her eyes big and round and said she was so sorry. "But they are cold Mom"...
Oh, boy.

I wanted her to get out a little yesterday but it was very sunny here. We made a deal and I took her and William over to the Ft Worth Zoo. We stayed just for a couple of hours and we were not the only ones that thought it was a nice day for the zoo. It was packed! We had to wait in a long line of cars just to park - as we were sitting there Madeleine says "I want to go home. This is not like I remember it from before". We were not even inside and she was ready to leave!
She ended up having a good time - I had her covered in sunscreen, legs covered, hat on, and umbrella for shade. I made her promise that she would ride in her wheelchair and not get herself worn out. Well, she got worn out riding but was happy. We saw the elephants and she wanted a trunk that she could wear and make elephant noises. The gift shop did not have one so she settled on an elephant shirt.
The outing was good for her and we let her take it easy the rest of the day.

I want to send out a big hug and thanks to Mrs. Sewell from school. She put together loads of fun stuff that Terry picked up from her on Friday and Madeleine had so much fun playing in the goodies. You made the best choices! She loves the dominoes and we have played them lots already!

We rec'd a gorgeous blanket from the dear ladies at Tumbleweed. It has a pattern of Disney Princesses and is so pretty. Madeleine is thrilled with it and we cannot thank you all enough!

The little miss is in bed and hopefully sleeping peacefully.
I have photos from the zoo and the party today - I will try and add some tomorrow.

Everyone have a wonderful evening.
xxxooo,
Connie & Madeleine

Saturday, March 12, 2005 10:22 AM CST

Hello!
We made it back home late last night. Madeleine slept most of the way home and then woke up for me to carry her in and put her in bed. She has been up and about since around 8 am and the boys and I are hoping that her mood improves soon!
She been eating her Taco Grill rice from pink bowls and playing Gamecube with William.
When I get everything sorted out I will give the short version of the past few days. Until then I am going to stare a few photos we took.
Thank you for checking in on Madeleine. Your messages mean so much to us both! AJ - you make me laugh and cry at the same time - I miss you too my dear!

I will try and update tonight but until then please do me a small favor. Please keep Brianna and Kim (her mom) in your thoughts and prayers. Brianna's grandfather died this week after a terrible accident. The funeral is tomorrow and Brianna is not feeling very strong. She goes in on Monday for treatment. I am going to take Madeleine up there so they can spend some time together.

xxxooo,
Connie & Princess Mad

Showing Kim a few dance moves in Child Life

Visiting "her" portrait in Community Relations with Cinda and the awesome girls in CR!

Spending time with her best bud Brianna.

I am leaving and I am taking my solumedrol with me!

Tuesday, March 8, 2005 9:38 PM CST

The little miss did not wake up in pain last night! Can I get a YAY?!
She woke up feeling stiff but rested - much better than the last couple of mornings.
We went to dance class and loved seeing Ms. Jane, Mrs. Martin, and Mr. Richard for the second week in a row! She promised me not to go all out and get too tired but I think she did push too hard. What can I do though? Keep her home and not let her have any fun?
Nope, she loves dance and seeing the gang at the studio way too much to give that up.

She did spend the rest of the day in and around my bed. They made the Disney Princesses in small sizes with clothing like Polly Pockets - so she has enjoyed playing with those most of the afternoon. I go crazy trying to keep up with the tiny shoes and trying to make sure they do not end up inside her poodle. He eats everything and Polly clothes seem to be a favorite..it must be because they are sort of chewy??

Tomorrow we report in at the clinic and see the doc's before checking in for solumedrol and IVIg infusions. I will get my mom to put an update in the guestbook after she gets home tomorrow night with details on how the day went. I imagine by 8pm tomorrow Madeleine and I will be snuggled in her bed while she gets her IVIg.
Her rash looks pretty good but I am concerned about the continued weakness, fatigue and pain. This has to get better at some point - I hope!

You are all invited to visit the Madeleine Boutique. It is at www.cafepress.com/madeleineshop . I hope that by spreading the word we can get people to be more generous when they donate to groups that fund research.

I am going to go pack Madeleine's stuff and love on her sad pup.

Goodnight and much love,
Connie & Madeleine

Monday, March 7, 2005 9:47 PM CST

You know, there was a time that I could stay up all night and keep on going like it was nothing - I mean, who needs sleep? Me! This is deja vu all over again!
Madeleine was up the last two nights and it was a challenge to get her comfortable and back to sleep. Saturday night is was only for a couple of hours. Last night she was up from just after midnight and it was after 5am when she finally fell back to sleep. We watched PBS Kids, played Leapster, and Gameboy. I drew the line at playing board games or anything that required me to actually sit up. That made Madeleine mad because she was sitting or standing/leaning against the side of the bed for hours. She was not hysterical with pain this time, it seemed that she was aching and not able to get in a postition that did not hurt. We did all the usual stuff - heat wrap, massage, Tylenol.
After she finally fell asleep the animals that had been sitting at the foot of the bed watching started to move up and investigate. I was trying to stay awake so that I could quietly shoo away Hully and Sami when they were sneaking up to sniff - it helped that I could hear them purring before they got to her. Little Willie was more of a challenge and he would not give up! He was determined to get to her and he finally got past me a little after 9 and went to work washing her cheeks. Up she popped and looked at the clock. Then I was read the riot act because "YOU were supposed to flush my line at 8 o'clock! MOM!" I tried to tell her that it was going to be ok but sometimes things get to the point where I just have to filter out some of it. I picked up the stuff, washed my hands and flushed her. Then she was happy to sit back and watch some more PBS Kids.
It did not take long for it to sink in that I was not taking her to school today. She was not happy with me...anyone notice how I always get to take the blame? Oh well, I just filter and move on.
She spent the day in and around my bed and was crabby most of the time. I hope she falls out tonight and can rest peacefully.

I did call and let the doc's know about her waking up at night in pain (again). It really worries me because she only seems to do this when things are not going well. They thought about having me bring her for labs in the morning but there is no point since she is scheduled for admission on Wednesday.

Life with her PICC line is great. She takes good care of it and is a professional now when it comes to dressing changes. Since Theresa had the idea of putting a mask on her so she can watch and participate she is more at ease. The pain from the infusions was getting so bad that it was heartbreaking to take her for them.

I will leave you with a MMQ from this afternoon -
Madeleine has a small wooden box that she calls her secret box (yike! Don't tell her I told you!) and she keeps little treasures in it. She was very serious when she was showing the contents to Terry today. Willie was right beside her on the bed and had his snout in the box so I pointed out that he was seeing her secret stuff. She told me "It's ok mom. He is not going to tell anyone. Besides, he is a DOG and dogs cannot talk! duh "
Yes, he is a dog but she speaks to him like he is her baby all day long. Do other 5 year olds use "duh" all the time?

Madeleine is tucked into her bed and Willie is crashed out on mine. Please say a little prayer that she will not have so much pain tonight. She wants to be able to go to dance tomorrow and see Mr. Richard, Ms. Jane and all her friends.
Thank you for sharing your time with us.
We love each and everyone one of you...duh.
xxxooo,
Connie & Madeleine

Saturday, March 5, 2005 9:23 PM CST

Hello!
It's been fairly quiet here lately. Madeleine has been complaining that her left calf muscle has been feeling like it was pulling. She tells me that it hurts and sometimes it hurts to where she thinks it is going to tear. This is a different type of pain than she usually has and I am not sure what is going on. We see the Dr and check back in for treatment on Wednesday so I will cover it with her Dr's then unless it gets too bad.
She has been getting around ok but still falls easily and that makes me a wreck all the time. The nighttime wake ups have started but are not too bad yet - is this ever a pattern of what?? We have a few hours of really good every day then as she gets tired she gets very crabby and that gradually gets worse until we can talk her into bed. Then I am worn out!
Since she was up in the night on Thursday night I did not send her to school on Friday. She actually slept in and so we did not make any noise and let her rest.

I added a new photo above of Madeleine at Ceramic Antics with our friends there. Did anyone notice the plate that is in the photo? I did it and it was awarded the coveted Piece of The Week Award by the staff of Ceramic Antics! Wooo hooo!! I cannot believe it came out so good. They must have touched it up before they fired it because it looks too good! :)

That is about all from here tonight. One day I would like to have Madeleine (the real one that is not taking the meds and feeling so crummy) for an entire day. I know she has to get worn out from all the emotions and from feeling bad all over. Before all this she was the happiest child and people would always comment on how all she did was smile.

One last thing - this week Madeleine received a package in the mail from the friends and teammates of Angel Cheyenne. In Cheyenne's honor they are sending notes and packages to Tumbleweed Foundation kids and it is so sweet they sent one to Madeleine. Cheyenne is a fellow Texan that bravely fought a brain tumor. Her webpage is www.caringbridge.org/tx/cheyenne5 .

I hope you all are having a wonderful weekend.
Much love,
Connie & Madeleine
Image hosted by Photobucket.com

Wednesday, March 2, 2005 8:55 PM CST

Last night I sat down to write an update and a big bang of thunder crashed that rattled the windows. With that I turned off the computer and crawled into bed. Terry said I was sleeping like a rock in no time. Nothing like a good storm to get some much needed sleep!
It must have worked for Madeleine too because she never made a peep.

Madeleine was feeling great Monday morning and she went to school for a little over an hour. When I picked her up we ran to Dallas to visit Brianna at TSRH since she was checking in for a couple of days to get treatment. The girls had a blast playing and buzzing around the nurses station. Gwen was calling them Thelma and Louise one minute and then down the hall Beth had named them Thing 1 and Thing 2. The two of them were lined up when the Child Life playroom opened for the afternoon at 2. There are not many kids inpatient currently so they had loads of people to play with and for help doing crafts.
By the time I was dragging Madeleine out to go home she was so crabby and totally exhausted. Brianna was getting worn out too and that was just in time to lay back and rest for her infusion. I hope that she is feeling better after her treatment - she needs a break!

Tuesday we went to dance class and it was so good to see Ms. Jane and all the friends there. Madeleine worked really hard and then she gets to sit out and be Ms. Jane's assistant when they do the tumbling part. It was so good to see her moving around and smiling. After dance she was done for the day. We went home and she parked herself in my bed and would not get dressed or leave the house again. She probably got too tried but she loved every minute of it.

This morning we took things slow and let her get moving at her own speed. She was complaining that her left calf felt like it was pulling. From what she could describe to me it was hurting but not like a cramp - she said it felt so tight that it was tearing. I am not sure what that was all about but she is moving around on it. We gave her some Tylenol and even though she said it is hurting it was not bad enough to stay off it. She enjoyed a little over an hour at school and was thrilled that she arrived in time for Spanish and Music. They were celebrating Brendan's birthday and made ice cream sundaes - now that would makes me want to go to school too!
We took a break this afternoon and let her rest and later on she was ready to go visit at Ceramic Antics. It is becoming a local hang out kind of place and a couple of friends dropped in while we were there. That was very cool! We finished some projects that we had already in progress and started a couple more. I forgot to take my camera again! I will make an effort to bring it next time! It was great to catch up with Beverly and Sarah and of course to see the tree loving shop kitty. She is growing too fast but is still small enough for Madeleine to carry her around.

Madeleine has been loving all the fun mail she has received from all over the place. I am so thankful to everyone that has taken the time to send her the cards and gifts - you are all so special to us. The Tumbleweed Foundation is the greatest and I hope you will think of them next time you make a charitable contribution. They are doing great things!

I have been saving a few MMQ's from the last several days:

A few days ago we were leaving a message in a guestbook and she told me that I had to type what she told me in a very serious tone "we have your prayer and our thoughts in our head"

We were in the car when she told Andrew
"Dracula is not real"
I think he was a big surprised by that.

I was attempting to help her with a puzzle when she told me to stop
"...I'm just contemplating.."

When we opened a box from Linda in MI she squealed when she saw the pink poodle in its bag "...look!! Willie it's your girlfriend!!" It came with little accessories that you clip on and a brush to style it's fur - she held out the package and said "Mom! Open my accessorizers!! Hurry! I have to accessorize my poodle!"

I cannot believe it is Wednesday already and we just have a week until it's time to go back in the hospital and start over again. Her mood swings are not quite as bad but she still has some doozies at times. Today our nurse came to watch me change the dressing on her picc line and I was so proud of my girl. She was so patient and still while I worked on it. The stupid tegaderm was stuck to everything and she laid perfectly still. One of our favorite nurses suggested putting a mask on Madeleine so that she could watch and that is what we did again today. If she can see everything she is much more cooperative and relaxed. The nurse today was amazed over Madeleine's medical savvy and asked her if she was going work in the medical field when she grows up. Madeleine looked at her and replied "No, I am going to be a Child Life Specialist" Our nurse looked a little surprised that she answered so quickly and said that she must have been thinking about it already. Madeleine told her that yes, she had and was definitely going into Child Life because she wanted to be able to help other children if they are going to need medical procedures.
I am so proud of my girl.

Thank you for taking time to check in on our Madeleine.

Much love,
Connie & Madeleine

Sunday, February 27, 2005 8:36 PM CST

This poodle reminds me of the Prednisone Princess!

We have enjoyed a fairly quiet weekend. Considering that we are down one vehicle while Terry's gets a new transmission - argh! Andrew has been great at helping out and not grumbling when Terry has had to use his car. OTOH I get very agitated when he needs mine...go figure.

Madeleine is doing about the same. She complains so some pain off and on but is playing and not letting it get her down. This afternoon she had a big meltdown and was crying over how tired she is. She is resting now so that we can join friends for an early dinner later. They are taking me out for some post-birthday celebrating. Yesterday Mom prepared an awesome dinner at her house and we ate and had cake while the kids played. My part-time son Josh was with us and so Madeleine enjoyed having three boys to play with...well, four if you count Little Willie.

On Friday I took Madeleine to school for class photos. Her class was scheduled for Wednesday but she was in the hospital so they held off until Friday so she could be in it.
I am so thankful that it worked out and that they were able to do that for her. Before photos her class presented her with a necklace they made. There is a bead for each child and they have their names and thumb print on each one. She is so proud of it! Thanks Mrs. K & class - you guys are the best.
The photographer was trying to pose her so that you could not see where is line is on her upper arm. Another mom standing there pointed out that we were not concerned about that and were just glad she is in the photo. Everyone at Walnut Creek Private School has been so wonderful to our Madeleine. I think her photos are going to be the best ever!

I have a pile of Thank You's to get out in the mail but I wanted to mention a couple here -
Sandi - the pillow is adorable! She loves it and you are so thoughtful. Madeleine is always thrilled when she gets the notes and packages you send. Thank you for making her feel special.
Mikeala - the scarf is just beautiful! Mikeala knitted a gorgeous little scarf that is just Madeleine's size. The yarn is so soft and in pinks and lavenders. It makes the girl look so glamorous when she tosses the end over her shoulder. :)

Please check in on Emerald www.caringbridge.org/mi/emeraldisle she has been so brave in her war on cancer. Last week the news from her Dr is grim and she and her mom could use messages in their guestbook.

I spoke with Brianna's Mom, Kim tonight and they definitely need some thoughts and prayers. Brianna's neck seems to be getting weaker - she cannot hold her head up for very long before she is laying it down. Her mood swings have been a challenge so Kim and I were able to cry on each others shoulders for a little while. She checks back in at TSRH in the morning for IVIg so they will see the Dr's before getting settled in. Hopefully the IVIg will at least give her a little boost so she can feel better. I was telling Kim how Madeleine was so tired that it made her cry and then I stopped and said - WAIT! That is how we both feel and we are just the moms. We would both like to see some improvement soon! www.caringbridge.org/tx/brianna

My dear friend Diane had some surgery on Friday and I hope she is back on her feet soon.

In the good news dept. please check in on our friend Lance. www.caringbridge.org/md/lance
He is about to celebrate his 5th birthday on March 9! That is a big milestone for this precious boy.
Another friend is celebrating her 1st birthday tomorrow! Heather Grace www.caringbridge.org/ma/heathergrace is one of the sweetest little girls around. She has been feeling bad lately and having ear infections in both ears really stinks! This little cutie is so much like my Madeleine because she is always smiling.

I started writing this earlier this afternoon and got side tracked. I have several new photos to put up - maybe I will get on that this week.
Thanks for sharing this journey along with us. It is nice to know we have so much love and support coming from all over the place.
All our love,
Connie & Madeleine

Thursday, February 24, 2005 9:13 PM CST

Today was an obstacle course that did not end until bedtime. I am sitting here feeling like I had to leap off tall buildings and land into a box of damp Kleenex. Saying that I am tired just does not apply any longer..but, enough about me!
The Solumedrol Mistress is in bed and hopefully asleep. Last night she was up at 3 am and I think again but I was so out of it Terry took care of her middle of the night issues. When she called for me at 7 am I was all on my own since Terry was already at work. If she was not so darn cute and if I did not love her so much I would run away! How can they not come up with a form of prednisone/steroids that does not make you feel like *#$&? That is what I have to keep running through my mind when I am making my 5th trip to the kitchen because I did not cut her toast the proper way, put her drink in the pink cup she wanted it in - NOT the other pink cup and certainly not THAT pink cup.
She had about 2-3 hours this afternoon that she felt human and I took her out for lunch and to visit at Ceramic Antics. It was fun that Sarah was there and feeling good after her recent surgery. Madeleine painted part of a ballerina and I painted the rest. I am so glad that they allow Madeleine to start projects then come back and finish then another day! She always seems to have a work in progress.
By the time we got back home she was not a happy camper and was complaining of pain.
We have been through a lot of Tylenol the last few days and she has her usual diarrhea that follows her Solumedrol infusions. I am trying to keep the fluids in front of her so that she will stay hydrated.

Since she seems to be sleeping I am going to try and get some rest too. We do have some stuff from the hospital that I want to report in on too! Hopefully tomorrow will be a better day and I will not be so worn out.

I do have a small request - Brianna's mom Kim has set up a caringbridge page for her. www.caringbridge.org/tx/brianna
Please stop in when you have time and leave some love in their guestbook. Brianna has the same disease as Madeleine and they are so precious together. It is a blessing for them to have each other along with Jennifer (www.caringbridge.org/tx/jenn). I am so glad they have in each other a person that understands the pain they live with.

One quick MMQ -
Madeleine and I were leaving to go out for lunch when she tells me
"I'm so hungry they can make me up a steak from a cow and we better hurry before they run out of cows!"

Love to all,
Connie & Madeleine

Wednesday, February 23, 2005 9:09 PM CST

We made it home around 7pm tonight. It feels so good to be here!
Madeleine must have asked me no less than 25 times "Mom, are we almost home yet? Are we to Mansfield yet?" I would just tell her that we were almost there and she would go back to watching her DVD until asking me again. She was so tired and wanted to get into my bed with her poodle, pillows, and rice from Taco Grill. When we were loading up in the garage at TSRH she reminded Terry that he needed to stop at Taco Grill on the way home and get her usual. Before we started out though she wanted to go to the convenience store that is across the street from the hospital for some gummy Lifesavers. We ran over there and I could not find gummy Lifesavers to save my life. Then the store manager started searching with me. We finally found a big bag and that made Madeleine happy. At the intersection in front of the hospital I had just pulled up and stopped at the light when Madeleine cried out "boo hoo We want our appendix out too!!". She was watching Madeleine The Movie and it was at the part where the little girls had been to the hospital to see Madeleine. They thought that it looked kind of fun. I know this is one of those moments that you had to be there to understand how it was so hysterical...let's just say that I had just taken a big drink and ended up wearing it all when Madeleine shouted that out.

Madeleine is doing really well. Between her new blood pressure medicine and the picc line she did super. It was wonderful to see her being social and wanting to do something besides lay in bed. The rash on her face seemed to be worse this morning on her cheeks but everything else seems to be about the same. It is heartbreaking to realize how much pain she must have been in getting the infusions the last few months. She was so relieved to see how different it was not to have an IV. They just hooked into her line and there was no pain!! yay!

For tonight I am going to keep things short. We are all very tired and just want to sit down and unwind. I will get into more details from the last few days tomorrow.

I am going to close this with a very MMQ from tonight as I was putting her to bed. She had her eyes closed when I was covering her up and fixing her pillows when she said to me "Mom, you do realize that your brother comes to check on you almost every night?"
My brother died in 1975 and my reply to my tiny daughter was that yes, I am sure he does check in on me and on you as well.

Good night and lots of love,
Connie & Madeleine

Sunday, February 20, 2005 9:16 PM CST

Madeleine's bag is packed and Little Willie is sad.
Tomorrow morning we will we have our clinic appointment before checking in for Madeleine's treatment. This is the first of three more her doctor ordered last time we were there. After the next 3 (given every other week) she will look at Madeleine again and decide what we will do next. I cannot believe we have been doing this for almost a year now. In some ways time has flown by and in other ways it has been the longest year of my life.

Madeleine is not worried about tomorrow at all - "Mom! They are NOT going to have to stick me!". She keeps reminding me - as if I could forget. :)
We didn't do anything special over the weekend. Madeleine did not want to get out of her pajamas and rested quite a bit. We played a lot of games and did piles of worksheets.
Yesterday I gave Little Willie a small dish of plain yogurt as a treat. He has digestive issues and someone suggested to me that this might be something he could eat. We put it down and he gobbled it up and wanted more. Madeleine wanted to keep giving him more but I wanted to wait and see if he could keep it down. He only eats a special food we get from the vet so this was a big treat for him. Sure enough he puked up a small amount in my mom's diningroom. Madeleine went over and examined the small puddle and announced "I told you he was going to puke up milk and calories!"
This from the one who was wanting to give him more!

I am going to make this short and get to bed early. Madeleine will be in the hospital at TSRH until sometime Wednesday evening. I will ask my mom to put an update in the guestbook tomorrow after she gets home. She can let you all know how Madeleine's clinic appointment goes.
All our love,
The Radzwions

Saturday, February 19, 2005 9:18 AM CST

Good morning!

Things have been quiet here the last few days. Madeleine has been sleeping OK but her legs have been sore and stiff. On Friday morning she was in too much pain and felt too weak to go to school. The rash on her face is red and blotchy but not quite as bad as it has been lately. She is starting to use her arm where they put the picc line more. It is still sore and she protects it like a mother bear! Yesterday she surprised us by bending it enough so she could touch her head. Good girl! I think she has been working on it when she is in bed and we are not around.

Madeleine has received several fun cards and notes from some very nice Tumbleweed foundation folks. She is loving every one she opens! Thank you for much for taking the time to send to her.
One of her wishgranters sent her a fabulous scarf in the mail this week - Mikaela!! It is beautiful and she looks gorgeous in it with her nightgown and warm pants. :) Thank you so much for thinking of our girl!

On Thursday we stopping in a Dad's store to visit and Madeleine saw they had Disney Princess stuff. How could he have kept this from her?? She went around and found a stamper of Cinderella's castle and tiara so we had to have those. Every visit to Home Depot we have to go to the toilet aisle and see her "flower potty". I believe he mentioned that they will be taking that display apart to reset it. Lord help us all if they remove her potty - I think it is a very nice special order thing.
Madeleine had to take her new Disney stamps to Ceramic Antics to use them on a plate there. I was all over that because I am sick of staying home! We went over there and visited with Beverly and painted. Except it turned out that Madeleine was more interested in the tree climbing kitten than painting. I think our timing was good because earlier that day that crazy cat had jumped and landed in their pan of glaze in the backroom. Beverly was not thrilled with little Sugar since she jumped out of the glaze and started running all over the shop. We saw little paw prints all over the place! I am glad we missed that whole show because I have had to wash paint off one of our cats before and it is not pretty! Sorry Beverly - this was just so funny you have to laugh over it now! Madeleine wants to come up there today and see what the kitty has done now...and she wants to see you too! :)
Note to Sarah - take care and keep resting at home sweetie! Beverly has everything at the shop under control and she is doing a fabulous job. Your precious kitty is missing you but she is going great just laying in the window watching for you to come back.

Heather - I know you guys have to be going nuts like Andrew is over the news that the hockey season might be un-cancelled today.

OTOH Little Willie is sad and laying by the door this morning. He must understand that the clothes I have put in our bag are for the hospital on Monday. Andrew is going to have to spend some quality time with him this week while we are gone. heh heh heh

Madeleine wants me to hurry up and get ready to go. My mom got in late last night from a business trip and she wants to go over there and wake her up. I am trying to keep her busy to give mom a chance to sleep in. Willie already has his collar on since he is ready to go to his granny's house too.
Have a wonderful Saturday everyone!
xxxxoooo

Wednesday, February 16, 2005 9:55 PM CST

This morning I realized that I had not finished unpacking from Madeleine being in the hospital last week. Then I thought about it a minute and we are going back on Monday so why bother!

Before I get into Madeleine's day I want to mention something from yesterday. When we were checking in at Children's Terry asked if they would validate our parking since with all of us we had 3 cars there. We were told no, that we had insurance so we had to pay. If we were medicaid patients then we would have been validated and parked for free. So, basically if you have insurance you pay more? It seems that way. After we were home I had a call from the dir of family services at TSRH. They arrange anything that takes place outside the hospital and they were ordering the company that will send out the supplies and nurses for Madeleine's PICC line. He wanted to let me know how much it was going to cost us. Last year when we needed a nurse at home it was covered - there was a fund that paid anything your insurance did not cover. They had this fund in place because they did not want families to worry about the cost of a child's care so that the family can focus on getting the child well. He said that as of Jan 1, 2005 the fund was not available to cover the supplies and nursing for home care. I guess I shouldn't be complaining since they are so generous and take care of everything else but I have a feeling that if my husband did not have a job and insurance for us that we would not have to pay the extra costs. I imagine there is a fund to help cover costs for the patients with no insurance. I think that is great but we should not have to be treated differently because we are fortunate to have insurance. We still have to pay for a place to live, food, utilities just like the other folks. I guess I need to get over it and worry about getting Madeleine on track but it's hard not to be angry. It feels like we are not worthy of help because we have insurance! Someone hinted to me recently that if we were indigent we would not have to worry about the cost of the IVIg Madeleine is getting. I asked if they were telling me that we are going to be billed for it because we have insurance and they declined to answer. IVIg is priced like liquid gold and I shudder to think what it will end up costing. Our maximum out of pocket is not a small amount. Does everyone with insurance have unlimited $$? I don't think so! OK - sorry for the rant. I am sure I will feel better about things after some sleep.

On to the important stuff!

The little miss woke up at midnight wanting to be in our bed. Terry put her beside me and we whispered for a little while. She slept off and on between needing a drink or one thing or another. When this happens we end up with 2 cats and Little Willie joining us to see what is going on with Madeleine. Then Willie will need to get a closer look at her and get on her pillow above her head and that won't be good enough because he will want to just give her a little kiss. I think you know what comes next "Get that poodle away from ME!". Then either Terry or I will grumble something about how he is HER poodle.

Other than her not sleeping she is doing great with her new PICC line. Her arm is still sore and she is careful to protect it. The nurse came this afternoon and we changed out the dressing for the first time. It took ages because the Dr had put on a tegaderm that was huge. If there had been a size tag it would have read XXXL! We spent a lot of time just rubbing adhesive remover and peeling gently. It went way up under her arm and covered part of her armpit. We were trying to get her to laugh through it but she was not amused. It is changed though and we put on a much smaller covering so that it will not take as long next time.
The red blotches are back on her face and she is not wanting to walk upstairs. That has me worried and I hope that maybe some of her weakness is from yesterdays procedure. If she will sleep tonight that will be a big help I think.

That is all the Madeleine news for today.
Everyone here is very unhappy about the NHL canceling the whole season. They better get to work so that we will have a 2005-06 season. It is so strange not to be watching games every night on Center Ice. Andrew would have been the most upset but then he realized that his beloved Tampa Bay Lightning will get to keep the cup another year.

Madeleine's response to the cancellation of the hockey season:
"They are just freaking me out."

Another MMQ from earlier today -
The nurse was teaching me to clean her line when Andrew walked in to ask me a question.
Madeleine cries out "Make Andrew stop - he is freaking me out!"
Then she was upset because of all the medical supplies all spread out on the table -
"..put that stuff away! It's freaking me out!"
The nurse had told her to turn her face away from the site where her line is and be very still while we had the dressing off. She explained to her that she did not want any germs on the area so it would be sterile. While we were putting the tegaderm back on she said to us "Oh no! I just moved my foot" - the poor kid thought that she could not move anything! We thought it was cute but Madeleine was not too happy with us.

I wish all that freaking out would make her tired enough to sleep though the night.
She was so sweet and snuggly before I put her to bed tonight. I was told that I was the best mommy ever. Of course, she is the best little girl ever!

XXXXOOO and I promise not to rant again for a long time now that it is out of my system.
Connie, Madeleine and the guys

Tuesday, February 15, 2005 9:47 PM CST

I am not sure I know where to start tonight. How about I start with 4 this morning - that is what time the little miss woke up. Terry put her in bed beside me and she snuggled up to me and whispered that she knew that a picc line was going to be better for her. That got my attention after all the chanting "I do NOT want a picc line!". I told her that I was proud of her and that it would be so much better. She whispered back all the things she would be able to do without having an IV in her hands. I was so relieved that she had accepted it and would not be to unhappy...wrong. When it was time to get up and start getting ready to go she went back to "I do not need a picc line!" She was still telling me that when we pulled in at Children's.
Cinda met us there and we got her signed in and then we waited and waited. I am not going to complain about the wait for clinic at TSRH again. When we finally were taken back to where they get down to business we had one very unhappy little camper. In fact her blood pressure was a wee bit elevated. One that I saw was 149/100 - yikes! They gave her a nose spray to calm her down then started an IV. I did not realize when they started the IV they put through medicine to make her woozy. When I stood up I put her on her feet and her legs did not work! That stuff worked fast and she was completely loopy on us. Since her IV was only for a short time they just put a few pieces of tape to hold it in and nothing else. When I sat her down on the table in the procedure room she held her hand up and said to me "Look! This is freaking me out. Go get my pink coband!" She wanted her hand wrapped in her pink coband and was not happy that they were not doing it the way she wanted. They had her so doped up but she still knew that they were not doing her IV right! When she was settled in and they had her wired up I had to leave. It was miserable to leave her in there. In fact if Cinda had not been right there with her in the room I would have had a big issue with leaving her. Terry and I were just outside the door and in a few minutes a nurse came out to get a CD she wanted to listen to. Then another nurse came to tell us she was doing great and was almost done. Next out was the first nurse and he wanted the pink coband. That made me wonder what was up! He went back in with that and then the Dr came out to tell us that she did great and they would be bringing her to recovery in just a few minutes.
Then it was no time at all until Cinda came around the corner carrying her with the nurse following. She was awake and talking while Cinda took her in where she would recover. The nurse hooked her up to monitors in there and we got her comfortable. She was a little nauseated from all the drugs and threw up just a little and then felt better. Then she sipped some water and that helped. She only needed to stay for a short time in recovery and we were on our way. The staff was so good to her and the nurse she had was super. He was only assigned to her during the procedure and we liked him very much. Cinda was beyond wonderful and we are so blessed to have her on Madeleine's team. She helped all of us today.
When we were in the truck and about to leave the parking lot she told me that she did not like Children's. I asked why? They had been so nice to her! She said that they gave her something that made her puke and she did not like that. After all she had been through all she was concerned with was that she threw up - even then it was just a little. They did get her several drugs and she should not remember everything.
We went from there to Mc Donald's. She had not had any food and she wanted a Happy Meal - they have My Little Pony's in them! I think she was asleep after a few bites and slept until we arrived back home.
Her mood since we got home has been pretty mellow. She is nervous about her new line and her arm is tender. We took it easy and played some games and Barbies. Then tonight the home health nurse came over to flush her for the first time at home. She went through everything with both me and Madeleine. We removed the wrap and checked her line out. She was very worried about anything moving and hopefully that will get better as it heals. We let her flush and I think she was amazed that it did not hurt like it was with her IV's. Then the heparin went in so easy she was very surprised. That little smile was back!
After we wrapped her arm back up she was ready for bed. Terry tucked her in while the nurse and I went over all the other details. Tomorrow they are coming to change her dressing for the first time and to train me to do it. We are going to try and be able to do it by ourselves soon. It looks fairly easy as long as you are careful to keep everything sterile.
I know I am forgetting loads of MMQ's (memorable Madeleine quotes) from today but I am exhausted.
The last few days Madeleine's face has looked so clear. She had no signs of the red rash and she looked wonderful. This morning at 4 it was starting to get red again and by tonight it is back to where it was. I am not sure what helped it to clear up for a short time - I just wish it had lasted longer.

Please be sending some thoughts and prayers for Brianna. Her mom will not know what is going on with her condition until Monday when she sees the doctors. That is days away when you are concerned about your child and I wish she could get some answers sooner but they told her that it will have to be Monday.

Terry just took a peek at the girl and she was resting peacefully.

I am headed for bed! G'night!
Connie & T, A, W & M

Monday, February 14, 2005 8:21 PM CST

What a day!
This morning Madeleine went to school for about 90 minutes. She enjoyed seeing all her friends and Mrs. K! They loaded her up with a big basket of fun Valentines and candy - she was in candy heaven! I picked her up and we grabbed my mom on the way to the hospital for our appointment with Cinda. Madeleine had carefully selected her outfit for their photo shoot today. She picked a new outfit that a dear customer of my mom's sent her on Friday. It is a white shirt with a big green frog wearing a purple marabou tutu! There is just a little glitter around the frog and she is wearing a purple hair bow. The pants are bright green, like the froggie, and they have big purple polka dots. I have to send a shout out to our friends at Dizzy T's in Longview, TX - thank you so much ladies! The outfit and the white dog are adorable!
We sat down with Cinda in the Child Life playroom where she broke the news to Madeleine about her getting a pic line tomorrow. At first she just stood there a little shocked looking and then after a few minutes she had tears popping out. We let her cry for a little while and then Cinda explained to her what would happen during the procedure so she would know what to expect. She was not thrilled but she got herself back together in time to take some darling photos. Pat from media is so much fun and I know the photos are going to be wonderful. Heather from Community Relations sat with her and Cinda and asked Madeleine some questions about Madeleine's experience with Child Life. The article will be out in March and I cannot wait to see what they put together.
They were having a Valentine's party at the hospital and we stopped in there before we left. Cinda walked us to the elevators to go up and she had just walked off when Madeleine looked at me with a serious look and says "When we get back to Granny's you are going to get on the phone and tell those doctors that Madeleine does not need a pic line and you cancel that appointment." OK, Mom and I just did our best to ignore those sort of comments from her because we heard about it all afternoon. The party was fun but Madeleine was getting tired so we stayed for a little while and then went over to my grandmother's to see her for a few minutes. I wish I had a nickel for everytime Madeleine has said "I do not need a pic line" since we left TSRH. She was not as angry as I expected her to be but she is not happy.

Since Saturday morning Madeleine has looked so much better. I am not sure if it's the IVIg finally starting to do its thing or if it's the Norvasc for her blood pressure. I really don't care what it is since it's just nice to see our little one looking and acting more like herself.
She is scheduled to be at Children's at 9:30 in the morning to get the line put in. It is never any fun when Madeleine cannot have food so it could be a really interesting morning. Hopefully it will be quick and we can get her some food - I know that will be the main thing on her mind afterwards.

Tonight I want to close with some Memorable Madeleine Quotes (or MMQ'S) from the last few days.
"I'm not sick you know. I do not have a thing wrong with me. This is all just a scam the doctors have going to get more patients..."

she was sneezing yesterday before taking her medications in the morning "See?! I am allergic to this medicine!!"

"Come ON Dad! I'm waiting as fast as I can!!"

"Mom?" yes Madeleine? "I do not need a pic line.."
"WAH!" what's wrong Madeleine? "I don't want a pic line!!"
"Mom?" yes, Madeleine? "my arm is swelling.."
What? Your arm is swelling? Let me see it.
"DUH, my arm is swelling and it's saying (she starting speaking in a very high squeaky voice) you are not sticking a pic line in me!!"
"you know, Trudi is just being foolish about this. I do not need a pic line.."
"Mom?" yes, Madeleine? "They don't know what they are talking about because I love getting IV's and I do not need a pic line"

"Mom?" yes, Madeleine? "When we get home you are going to call those doctors and cancel that appointment.." I cannot call them Madeleine - they have gone home for the day. "Well, you can just call them at home!"

I hope everyone has a lovely Valentine's Day.
all our love, C & the crowd here

Friday, February 11, 2005 7:58 PM CST

I think the blood pressure medicine is helping. She even looks a little better and her mood is great. We rested this morning and played games in bed with our pajamas on until almost noon. Both of her hands are sore and bruised. The right one where the iv finally held is very tender. I have been coloring with her so that she will exercise it some instead of letting it get more stiff. Her doctor put in orders to get a pic line placed next week. Madeleine does NOT know yet so please do not mention it if you see her. She will probably be mad at first until she understands that it will be so much easier on her. The main concern is the toll the IV's are taking on her tiny hands. They are getting weaker and there is no reason to risk any long term damage when she can get a line placed. Since she is still a little emotional at times we don't want her stressing over it from now until Tuesday. Plus we do not need her to get so worked up that it elevates her blood pressure. We are treating her with kid gloves because we all feel bad that she had to start the b/p meds. In fact when I went to the pharmacy to get them yesterday she asked me to pick up a Doggie Day Care toy. I went to three stores until I had every piece of Doggie Day Care that is on the market. We feel so bad that she has been feeling awful and now all this that I would have bought her another (live) poodle if Terry would have let me.

This afternoon she felt like getting out and guess where she wanted to go? Her current favorite hang out - Ceramic Antics! She wanted to paint and I wanted her to exercise those little hands if she felt up to it. Well....Beverly if you are reading now is the time to walk away! She told me she did not want to read about this and I told her tough!
When we walked in the door there was no one in the store. Madeleine went to the door to the backroom and called for the girls and there was no answer. The back door was open and both Sarah and Beverly were outside. I think I have mentioned that there is never a dull moment at Ceramic Antics - well nothing has changed! They were out back because the new shop kitten was stuck up in a tree. Behind the shop is a creek that runs through a small canyon - ok, maybe it's not a canyon but if you were hanging out off a table pulling down tree branches to grab a kitten up in a tall tree it's a freaking canyon!
Madeleine and I joined them and we all looked for ways to coax the little sucker down. It was not budging. Several times it would come out on branches and Beverly climbed on a table to try and reach it but then it would go back over to the middle of the tree. Of course it would be a tree that was not possible to climb without a really tall ladder. When it looked like it was getting close enough to grab it would hear a noise and get interested in it..like a passing train or bird. I phoned Andrew and asked him to come help us. He is taller than we are and I thought he might be able to reach one of the branches the cat kept walking out on. I wish I would have had my camera with me because it was so funny at times. The cat was finally rescued without having to call the fire dept and without a ladder. I would never believe this story if someone told me but since I witnessed it I can tell you it is true.
Madeleine had been pacing in and out of the store calling to the kitty. She had given up and was inside painting on her latest project. When we brought the kitty inside she took over and was carrying it around. Never a dull moment I tell you...

William was in a science fair competition today and won a superior rating. His project scored 46.5 out of a 50. He won a blue ribbon for that and then he was awarded a medal for the highest award for 5th grade in his category. There were many other schools competing and we are so proud of him! He did a fantastic job. I was thinking back to November and December when he kept telling me that he was going to get a 0 on this project. He was so worried that he would not get a good grade on it and look how good he did! He was selected to represent his school at the competition and won an awesome award. WTG William!

Today we were laughing at some of the things Madeleine had to say. One was while we were having dinner - she had been playing a video game and won several prizes. She put them on the table for my mom and Terry to see saying "It's just so individual! I didn't know I was so good!"
Then a little bit later she was playing with a volleyball and we were telling her what a great job she was doing and she laughed and said "I know, it's just a gift from God".

Have a peaceful evening!
love, Connie & family

Thursday, February 10, 2005 9:29 PM CST

Our poor girl really had a rough few days. She was in a great mood when we arrived at the hospital on Monday and had smiles for everyone. No, we were not thrilled with the fact that her disease is still active and we cannot get results as fast as we would like. The doctors said that she will get 3 more treatments of solumedrol and IVIg every other week. The next one will be 2/21 and then after 3 more they will decide what to do next. They are concerned about her getting so fatigued. We are to limit her time at school to an hour to 1.5 hours at a time. She may be able to go more often if we limit the time that she is there. I know she gets very upset over the fact that it makes her so tired. The letter I have from her doctor spells it out clearly that getting her too tired can worsen her condition.
We finished our clinic visit and headed up to our room in record time. In fact we were celebrating because it meant we could get that medicine running and it would be done earlier. On the first and second days of treatment she gets over 9 hours of infusions.
Well, things did not go that smoothly. As Mom mentioned in the guestbook it was not so easy to get her iv started. After a couple of different nurses tried they called up an anesthesiologist to come get it started. They could get it in but then the little vein would blow. I cannot believe how Madeleine sat on the side her of bed with her hands out for them to keep probing the needle in. She was crying her little heart out after the first couple of attempts but no one was holding her down. She just sat there. It was heartbreaking to watch and everyone there was suffering along with her. They gave her a break to play and move around a little before the doctor came in to try. She was so brave when it finally went in and held she gave a cheer. We all cheered when we saw it worked.
She went out of the room proudly holding her hand up showing everyone it finally was in.
The girls in the Child Life playroom told me that she walked in letting everyone know it was finally done and in. It ended up being very late when her IVIg finished that night. Oh well, we tried to finish early!
Madeleine did have some surprise guests stop by on Monday and that helped pass the time. Sarah and Beverly from Ceramic Antics came by and Madeleine gave them a whirlwind tour of TSRH. They left just in time for the ordeal with her iv start. Then later my friend Mary, her daughter Sidney, and Mary's mom came by. They arrived just before the doctor came in to try and get her iv in. The girls played in the playroom and in Madeleine's bed while we all visited.

On Tuesday she had time to play and move around some before it was time to start her medicine. She was very worried about baby Sidney - the one that has been at the hospital for a few weeks prior to her surgery. While the doctor the day before was starting her iv she talked to her about baby Sidney. Since she was going to be there for the surgery Madeleine wanted her to be sure they put a pink cast on the baby afterwards. The Dr said that she would tell them in surgery so that when Sidney gets that kind of cast it can be pink. The good news was that on Tuesday morning when they went into surgery they could put her little hips in place without surgery. Being in traction must have been enough for them to move things around and put her in a cast. When Madeleine got the news she was so happy for Sidney. The sad part was that the baby was crying so much from the pain when she finally got back upstairs. Madeleine was so worried and kept dragging Mom or me upstairs to the chapel looking for Sister Virginia. When she finally caught her they went into the chapel for some time together. Then Sister Virginia took Madeleine with her to Sidney's room to see her. That seemed to help Madeleine feel better. Later on Sidney was able to get more comfortable and she was happy when they started letting her have some formula.
It was still a very long day with medicine running late into the night.
Madeleine's surprise guest on Tuesday was Allyssa from school. She came up with her mom and grandmother. They got the now famous Madeleine TSRH tour. The girls had fun playing as long as Madeleine felt good. It's hard because with the drugs she is good one minute and then miserable the next.

Wednesday started off early. There were loads of nursing students at the hospital and the one we had Wed. morning decided to wake us at 6 am. You can imagine how thrilled we were with that! He left quickly when I glared at him. Our nurse came in right afterwards and was shocked that we were awake. She asked if he woke us...uh, yeah. Let's just say that she was less than thrilled and I think he will be a wee bit more considerate before he wakes a child that has been up and down into the night getting medicine that makes them feel miserable. I could have felt bad for him since she went after him like a bulldog but I was too tired to feel anything. The extra couple of hours of sleep would have been nice since we did not get home until fairly late that night. Madeleine's blood pressure had been elevated each day but on Wednesday it was too high to even start her infusion. Our nurse phoned the doctor and got her limits raised and they ordered a drug to lower it if necessary. It ended up being necessary to get things done. When she finishes on the last day we always do a big happy dance when the infusion pump gives the 10 minute warning - that is 10 minutes and she is done! She had been feeling so bad and when her b/p goes up she gets agitated and that makes everything worse. It was all smiles when that 10 minute alarm went off.
After Emily unhooked her she started taking the coband off and getting ready to get the iv out. She was so funny all of a sudden, and happy. Cinda was sitting beside her and she would direct either Emily or Cinda on what to hold and what to do. "Cinda - hold the gauze"
Then a minute later "Emily - you hold the gauze!". We were all laughing over her directions.
At one point she was using the adhesive remover pads and she told them "this is a sticky situation". Jennifer was volunteering on Wednesday and had just finished her shift so she got to be there and see this event. It was like Madeleine was back! When she knows she is going to be able to get that iv out and go home she is a whole different child!
We waited an hour after her medicine finished and Emily checked her b/p - it was higher than when she was getting the medicine. We waited and kept trying every 15 minutes and it was not getting better. It was staying up and she was getting upset because she wanted to go home. Emily phoned the on call Dr and he said that she could go and we would check her today. She was so relieved to get into the truck and go home. Terry was instructed to stop at Taco Grill and get her some rice on the way.
We were over half way home when she handed me her DVD player and said she as going to close her eyes and rest until we got home. She insisted that I wake her so she could have her rice before bed. Did she really think that I could get her past Little Willie without waking her up?
Andrew had to help hold on to Willie because he would have hurt Madeleine since she was so weak. She got to eat her rice and we let Willie love on her without going wild. It was so nice for her to get a nice peaceful nights sleep without waking.
She is always weak after her pulsing but she today she wanted to just stay in bed. We went up to our pediatricians office for them to check her blood pressure - it was still too high.
I called TSRH with her numbers and they phoned in a new drug for her to start. It will help keep her blood pressure stable.

We have fun news to report in. March is Child Life month and TSRH will be doing a profile on Madeleine and her Child Life Specialist Cinda. I am not sure of all the details except they are going to do a story and some photos and it sounds sooooo exciting!
The story of Madeleine at the Melrose with Chef Carlos was in another newspaper and Cinda had a copy for us to see. It is so unbelieveable to see her in the paper like that!

I know I am probably leaving out something else important but I will remember it later I am sure.

Thank you for taking time to read about our Madeleine.
love, Connie & family

Wednesday, February 9, 2005 9:21 PM CST

We are home.
Today was such a long day and we are all exhausted. Madeleine's blood pressure was elevated and they had to give her some fedepine to get it down enough to get her infusion done.
When her nurse checked it for discharge it was too high for her to leave. You can imagine how thrilled Madeleine was with that! We had to wait and keep her chilled out until it went down enough that she could leave.
It is never a dull moment these days.

I will report in on the last few days tomorrow after some rest.

Madeleine is tucked into her bed and resting peacefully at the moment.

More tomorrow. Love, C & family

Sunday, February 6, 2005 9:03 PM CST

We don't have much to report tonight. I cannot believe it is already Sunday night!

Yesterday Madeleine had a great time bowling at Allison's birthday party. William went along with us and we got a lane near the party so that he and I could bowl some too.
The rest of the weekend Madeleine pretty much rested and played things that she could do laying down or in her pajamas. She is still having trouble sleeping and getting comfortable. Her legs have been hurting and she complained about her ankles and feet today.

Hopefully she can get some needed rest when they run her IVIg late tomorrow night.
Monday and Tues. will both be long days since her infusions will last almost 9 hours total.
She is scheduled to get solumedrol all 3 days -hopefully her blood pressure will cooperate!

Everyone take care! I will get my mom to put a note in the guestbook on how Monday went and how Madeleine is doing.
Love, Connie, Madeleine & all the boys here (Terry, Andrew, William & Little Willie)

Friday, February 4, 2005 9:02 PM CST

Tonight I am moving slowwwly. The little girl woke up at 4 am this morning needing us. Terry moved her to our bed and she told me the pain was really bad in her right leg. We warmed her heat wrap and I rubbed it with her calming lotion. That seemed to give her a little relief, along with propping it on me. I am sure Little Willie snuggled next to her helped too.
That is how our day started because we did not get to go back to sleep. Have I mentioned before the issue I have with how they repeat episodes over and over on PBS Kids?? ugh!

I had decided not to try school but she was counting down the minutes until time to get dressed. She was determined to be there since she will be in the hospital next week.
When we were almost there she burst into tears and told me she was too tired and to "..please take me hhhhooommmme..." I turned around and she stopped crying. When we were almost home she burst into tears again "..but I want to go to schoollllll...."
I earned a patience badge because I calmly looked back and said to her that I would take her to school and no more changing her mind. I hate steroids.
We got to school where she smiled at Mrs. K like a fresh little daisy. She promised me that she was staying for the day - which means all 3.5 hours. Guess what? She DID IT! I was so proud of her for sticking it out and making it through school. This is the first time in ages!
When we got home she wanted me to carry her and she told me she was feeling really bad. I let her spend the rest of the day in my bed where we read and played games. She was so tired but did not nap at all. I was chain drinking diet pepsi all day and sometimes I think I had 3 cans going at once. Before long there won't be blood in my veins, it will be diet pepsi.

In the late afternoon I laid down beside her and told her my head hurt. She told me that she would be glad to rub it with calming lotion to make it better. It was so sweet and I managed not to hurt her feelings but I think lotion all in my hair would not make me feel better.

She was ready for bedtime because she wants to be rested for Allison's party tomorrow.
I hope she will have a good night - in her own bed and without waking in pain.

Thank you to all the friends from Tumbleweed that have been stopping in and signing Madeleine's guestbook. She loves getting the messages. You are doing so many nice things for children and their families! Thank you for featuring Madeleine!

I hope everyone has a wonderful weekend.
love, Connie & family

Thursday, February 3, 2005 9:19 PM CST

Hello everyone!
Earlier when I tucked the little miss in she promised that she will try again tomorrow to go to school. She went on Wednesday but had them call me after a couple of hours because she was hurting. She did not tell them she was hurting but when I got there and saw her she whispered in my ear that was why. She said that she did not feel like she could walk anymore without resting. That has been the way her whole week has been.
I was happy that she at least tried to stay the whole morning. Maybe tomorrow will be better.
We are looking forward to her friend Allison's birthday party on Saturday. Madeleine already has her bowling bag out and her ball polished! It's been ages since we have been and we are ready. She has the prettiest bowling ball and she usually squats and pushes it down the lane.

This afternoon we had fun eating with Aunt Charlie and Josh. She had picked William and Josh up from school and we had a great time just being together. We ended up at Ceramic Antics after eating to do a little painting. Madeleine painted some gifts they had been holding for us and William painted me a plate. Charlie and Josh had some projects they worked on too. Beverly - it was fun as always! Tell Sarah that we are sorry we missed her and we will see her soon.

Just before Madeleine went to bed she told me to leave a message here for her Granny:
HURRY UP AND GET HOME!! NOW!
Got that Mom?
She has been out of town working the last few days and Madeleine is ready for her to get back. Oh, and yes, she did shout it just like that. As I always say, gotta love steroids. One minute she shouts at me and the next she is curled in my lap being the sweet girl she is.

I spoke to Brianna's mom last night and their week has been tough. She was getting her solumedrol Mon - Wed and when I was talking to her they were waiting on Bri's b/p to come down enough to even get started. They were hoping to get home sometime last night after her infusion. I hope they were able to get finished and go home. Brianna has a tough time with the solumedrol and her mood swings are far worse than the ones Madeleine has. It is hard to see what these little ones go though because of the drugs sometimes.

If you get a chance please check out www.tumbleweedfoundation.org. Madeleine is one of the children featured there this month. It is a wonderful group of people and I hope you will stop in there.

Please keep those thoughts and prayers going Lance's way. He is still in ICU and his mom has had her hands full just getting accurate information. www.caringbridge.org/md/lance
I would really appreciate it if you can leave her a note in his guestbook. It is amazing how much a few kind words mean to a very tired mom. Hang in there Tina. We are thinking of you and our boy!

Have a peaceful evening!
xxxooo,
Connie

Monday, January 31, 2005 8:49 PM CST

We planned and rested up for school today but the girl's body was not cooperating this morning. She was very weak and admitted right away that she would not be able to handle it. It was so sad to hear her admit that she was not able to walk around very much. She was so wobbly that she ended up falling in the kitchen this afternoon and scaring the life out of us. I was upstairs and when I heard her fall I was prepared to run to Dallas because it sounded so bad. She landed on her back and it knocked the wind out of her. Terry carried her right up to me and she was just starting to gasp - she was turning blue there for what felt like minutes. When she was able to cry I felt of her back and tried to see what needed to be done. She wanted no part of it when I was thinking out loud about what Dr to phone and where to go. I guess she knew best because she is ok tonight - just very sore. She is not moving too quickly and her back is tender in places with a little swelling. Can you believe this? I have been so afraid of her falling since she is so weak.
We are still getting up at night. Last night she made it until early this morning but she is still very stiff and sore. I guess it's one of those situations that it's worse before it's better. We are just going to keep doing what she feels up to doing.
I went up to her school and picked up her work and visited her friends there. She misses them all so much! We are going to try really hard for Wednesday guys - so everyone try hard and stay well there!!
Madeleine is doing her reading lessons and that is going great. She is mastering the Bob books and loves to be able to read them herself.

On Sunday we went and played at my dear friend Mary's house. Mary - if you are reading - I was talking to Terry last night about how long I have known you and Marcy! That is so scary! We loved playing with Sidney. She is adorable and she certainly took to Andrew. ;) We will look forward to seeing you guys at TSRH - you and I can hit the pinball machine while the kids play. BTW - Thank you so much for Madeleine's table!!
Mary built a miniature picnic table for Madeleine and it's painted pink and yellow with a Disney Princess theme top. It is so cute and its new home is the center of our livingroom. She loved playing cards there tonight before she had her dinner. You should have seen her pick out placemats and set her place on her own table.

We are scheduled for IVIG and solumedrol again on Monday Feb 7th through Wed. Thankfully it's not over the weekend again. TSRH is way too quiet on the weekends. Madeleine was not happy at all that there were no volunteer activities going on. She loves seeing all those wonderful people and being a part of the action.

Take care everyone and thank you for checking in on our Madeleine.
xxxooo with love, Connie & the gang

Friday, January 28, 2005 10:28 PM CST

The little miss has been having trouble sleeping at night. She wakes in the wee hours and cannot get comfortable. We end up having to massage with calming lotion to try and help her get relaxed again. All this means that Terry and I are not getting much sleep. It is amazing how she can wake up at a crazy, early hour and stay up until bedtime the next day. It's not pretty but she does it!
When I was trying to get her settled in earlier tonight she told me she wanted a drink of water. I came back to her room with water - "not that cup!" and she turns away...ok.
Back to the kitchen and I dump the water into another cup. Back to her room where she says to me "that cup has Power Rangers! You KNOW I cannot stand Power Rangers..DUH" and she turns her back. I went through this (calmly I might add) no less than 4 times when she finally told me that she wanted a Hello Kitty cup. That information would have been helpful in the beginning but you take what you can get from a steroided up kid. I get her water in a pink Hello Kitty cup and hand it to her. The look I received was priceless..."this water is cold! I don't drink COLD water at bedtime" Geeze, what is wrong with me?? I should have known that, right? I stumbled into the kitchen and stuck it in the microwave for 20 seconds and took it back to her. I actually have a witness of this exchange since I was trying to take to Jenn (www.caringbridge.org/tx/jenn) on the phone. We were going to meet in the morning at the MDA Stride and Ride but I think for me it would be stumble and fall.
I have to remember and tell Madeleine about how much fun Jenn had playing with baby Sidney when she volunteered at TSRH this past week. Maybe we should have lunch one day and that way you can tell her yourself, Jenn!

Back to the little night owl. She has been having some pain but she has not started begging to stay home. When she does that I know she is miserable! All the getting up at night is a big flashback of this time last year and it lasted until well into the spring. I feel like the cold and wet weather we are having is not helping either.
Her mood has really been pretty good overall and there are few meltdowns. Those are fairly small and not often, so nothing we cannot handle. That is how I know when she is really feeling bad because that is not normal for Madeleine.

Please do me a little favor if you have the time. Check in on Sam - he is in the hospital www.caringbridge.org/tx/sameisenberg. Also our friend Lance is still in ICU and may be there for a while yet. He has pneumonia and I know his family could use some cheering up. www.caringbridge.org/md/lance

I hope everyone has a great weekend.
All our love, XXXOOO

Wednesday, January 26, 2005 7:22 PM CST

The big discussion tonight:

Madeleine: I am not going to bed at 7 tonight.
Me: Yes, you are going to bed at 7.
Terry: Come on girl, lets get going.
Madeleine: Look, I am simply too old to go to bed at 7 anymore. (!!!)
Me: No, you are not and you going to bed now.
Madeleine: HUH. Not this child.

I never should have bragged about how great the last couple of days were. Why on earth did I jinx myself?? Of course, my mom pointed this out to me this morning....after a long night with Madeleine, Little Willie, 2 cats, and Terry & I all sharing a bed. ugh...

Terry went to check on her just after 11 pm last night and she was sitting up in bed waiting. He said that she looked sleepy and did not appear to be doing anything - just sitting there awake. He tucked her back in and within 10 minutes we heard pounding. She was banging on the door to call him back to come get her. When I asked what was wrong she told me that her legs and feet hurt and that she could not get comfortable - and "I just cannot SLEEP!" Since she was out of sorts that meant her puppy was out of sorts and everything went downhill from there. When things had settled in Willie would try to lay close to her and she would shout "Get this poodle away from me!!" I love someone shouting at me just inches from my head in the middle of the night.

She was up around 6 since that is when Terry was up getting ready for work. That is when a case of 'roid rage hit. "I WANT FOOD!" It is kind of funny (If you can't laugh sometimes you will just cry) how fast that the hungry spells hit from the steroids. Nothing we had made her happy and I was offering anything and everything we had in the house. If we had it she did not want it. Thankfully the standoff did not last for too long and she agreed to some la Madeleine bread that we had - oh, with EXTRA butter. You have to shout the "extra" part to appreciate how much fun I was having. I guess that I laid back down because the next thing I knew I heard her shout and I was drooling. She was hungry. Again with the la Madeleine bread with EXTRA butter and things were ok.

You would have never known by noon, when we met a good friend for lunch, that we had been up most of the night. This kid never ceases to amaze me. She was charming at lunch and used all her best manners. Then we all went over to our nail place and treated her to a pedicure and manicure. She sits between my legs with her little feet and legs dangling into the warm water. It started feeling good because next thing I knew she had squatted down and her butt was soaked. She did not care because the lady sitting next to us had a 8 mo old baby on her lap and you know how much Madeleine loves the babies. It made for a fun afternoon of pampering, and was just enough to burn off some of M's extra energy she had today. When we came home she stretched out in my bed and stayed there through dinner. That is when the bedtime debate started. I told her William always went to bed at 7 when he was her age. "Not this kid!" I was told. Anyway, the debate is over and daddy tucked her in a little while ago. She has to be exhausted!

I hope she is able to have a restful night. This is the same thing that happens to Brianna - her mom has told me so many times that Brianna has so much trouble getting comfortable to sleep. That means no one sleeps at either house when these girls are having pain at night.

I will brag that she is doing so well reading! A friend recommended a book that she used to teach her children and I ordered it recently. We have covered 2 lessons and I am so amazed! She is doing a fabulous job! The book is called Teach You Child To Read In 100 Easy Lessons. I figured it was worth a try since she is missing so much school and I am very pleased 2 lessons in.

Oh boy, I am being paged to the little princess's room to massage.
Hope everyone has a peaceful night!
xxxxoooo

Tuesday, January 25, 2005 8:19 PM CST

Wow - we have had 2 pretty good days here so far. For the past several months Madeleine would come home from the hospital after treatment and spend days laying in bed. Not this time! She was determined to get out yesterday and today she dressed herself to get on the way to the Little Dolphins meeting at TSRH.
It is all because she received treatment just 2 weeks ago and then the one starting Friday - that was before she was completely worn down. We are so encouraged to see her looking more like Madeleine! She is playing and doing things that she had stopped doing. It sucks that we have several more treatments scheduled for every other week but if she keeps doing as well as she is today then we can handle it.

Before Little Dolphins she did stop in and see little Sidney. She was smiling and flapping her little arms while on her back in traction. That kid amazes me - she should be screaming the way she is tied up. :)

We saw Brianna today and she is still struggling. They are waiting on some appointments that are being made to try and figure out if she can have any more IVIg. It is on hold for now since they think it is causing some bad side effects for her. That stinks since it has helped her the most so far! She is having so much pain that it's hard to sleep or even get comfortable. They have her down for an MRI Feb 8 - I hope they get some answers from that so this child can get some help with the pain. Since that is what it took for the doctors to finally see that things were not right with Madeleine. I told Brianna's mom to hang in and things would get better for them soon too.

Please remember Madeleine's friend Lance www.caringbridge.org/md/lance he has pneumonia and was admitted today to ICU. We are very worried about this little guy - this is one tough little boy. He has been fighting since he was born so we know he can fight this mean old pneumonia and hurry back home.

Take care!
xxxooo

Monday, January 24, 2005 9:00 PM CST

OK - here is how our weekend went.
Friday we had our clinic appointment and it went smoothly. No long waiting anywhere along the way and so Madeleine stayed in a fairly good mood. She worked really hard when the PT tested her and she was determined to do well. During our meeting with the Dr and her nurse they decided that she needed something for her stomach (duh, been asking for months!!) because she complains (has for ages!) that it hurts. They gave her a dose prior to her meds running and it made a huge difference. She was not near as miserable with stomach pain from the drugs. The Dr decided that due to the increased disease activity they saw on her MRI we are going to aggressively go after it with solumedrol and IVIG every other week for now. After 3 treatments we will take a look at things and see what to do next. I think that means that they will then decide if she can graduate back to every 3rd week for a while or if she has to stay at every other week longer.
The amazing thing is that we had the "real" Madeleine back and her nurses were thrilled! It was just like old times...well, like last Spring and Summer. She was happy and totally social. While she was getting her solumedrol we went to Child Life and she played and did crafts. Then when we went back to the room she was busy playing with her toys and games from her welcome bag. I firmly believe that is because she was just treated 2 weeks ago and she was not as run down as she has been when we were waiting 4 weeks between treatment. By that 4th week she was so run down that she was miserable.

When they started her benadryl around 6 pm that made her tired, so we snuggled her up in bed and she settled in for the night. By the time they hooked up the IVIG she was out cold. Usually the IVIG comes in a glass bottle but this time it was in a bag which seemed to make a difference. It is foamy - almost like they have soap in it - and the bubbles would get in the lines and the alarm would go off. Not a nice thing at 10 - 11 pm with a sleepy girl. Both nights our nurse would have to draw out the "champagne bubbles" with a syringe and then put it back in the bag so we would not loose a bit of medicine. When it comes in the bottles the foam seems to stay to the top of the medicine and not in the lines. Oh well, we went with the flow and it's done for this time.
Madeleine was thrilled to see Carol and Genesis on Friday too. Carol volunteers and Genesis is her awesome guide dog that everyone adores.
Late Friday afternoon I ran to the Child Life playroom to pick up something for Madeleine and Kim was feeding a baby - baby Sidney! She is so cute and we cannot resist babies!
Since there several people needing things and the phone ringing, I offered to go to the trouble of holding Sidney's bottle. :) You know I really could not stand it and had to get my hands on her. She and I had so much fun until Kim got everyone what they needed. This little one is 5 months old and she is in traction for the next few weeks preparing for surgery.
I kept telling her that she should be screaming at the top of her lungs to get out of her contraption and play. Madeleine did not get to see her Friday but on Saturday morning she sure did and it was love at first sight.

On Saturday morning Terry came up early so that I could get a shower and we had fun playing in Child Life. They got the pinball machine fixed and if they would have let us we would still be playing. :) Madeleine was making valentines with a group that came up to do crafts with the kids. Terry was getting stomped by me at pinball when Madeleine got a big surprise. Malina and Mikaela walked into the playroom and she was so excited to see them. They brought her a game that is called The Disney Princess Spinning Wishes Game.
Is that fitting or what? On the back of the box it reads "You get to be Snow White, Cinderella, Sleeping Beauty or Belle in this game of gifts and wishes! As every good Princess knows, having your wishes granted is the key to a happy ending..." Can you believe that? We were all choked up reading it. Of course we had to open it up and get a game going right then! While we were setting it up Granny, William and Andrew came in. The boys took over for me at pinball with Terry while all the girls played Princess Spinning Wishes. It is really a fun game and we have played it many times now. Thanks Mikaela and Malina - you guys are the best. Madeleine loves you both and she thinks the world of you.
After our game we took them on a tour of TSRH. Madeleine loves giving tours of the hospital when anyone new comes up. We always make a stop in the beautiful chapel where Madeleine likes to leave a prayer in the book. I am trying to remember what that book is called - Diane?? My memory is gone - has been for over a year! Anyway, they have a book there for you to write in your prayers and Madeleine dictates hers and then she signs her name and usually draws a picture, hearts or smiley. This time she was asking for God to watch over her friend Lance. He has been feeling bad the last couple of weeks and she has been worried about him. His CB page is www.caringbridge.org/md/lance if you want to check in on him too. Then she added that she was thankful for her sweet wishgranters sent to her. I have taken her to the chapel at TSRH many times and she has never once asked me to write anything for or about herself. She always prays for others and has a lot to be thankful for. I am so proud of this little girl of mine.
Saturday afternoon her friend Hannah came up with her family to visit. We always have fun with them and her sister Haley has been in classes with William for several years. They played games together while Hannah and Madeleine played in Madeleine's bed.
Madeleine had been able to sit beside Sidney's wagon several times through the day and play with her. Since she is in traction they keep her in a wagon when she is not in bed and she loves being at the nurses station or Child Life where all the action is. Late that evening when the nurses had her out of her traction to feed her they brought her to Madeleine's room to visit. You can imagine how happy that made our girl since she was in bed hooked up to her medicine. We keep her in bed when they run her IVIG because she is sooo sleepy from the benadryl. She needed to go potty at one point so Terry and I push all her equipment into the bathroom and I set her on the floor to adjust everything. She says to me "I am so wobbly and I feel like a boneless chicken" we laughed so hard. That made her mad that we were laughing so we went back to being quiet and letting her sleep.

Bright and early Sunday morning Madeleine went to the nurses station and found Sidney there. She managed to score a gig baby-sitting (playing with Sidney while the nurses watched) while I took a shower. They had so much fun and she played until it was time to get ready for her last solumedrol. Her blood pressure had been on the high side since we started on Saturday...well, it was too high to start on Sunday. I laid down with her and we read and played gameboy quietly to see if we could get it to go down. That worked but it was tough keeping it down. Emily had to stop it once when she got way too high. That sent Madeleine over the edge and she was sobbing because she just wanted to be done and go home. Of course the crying just made it go up more! Then we got the best idea - Sidney!! We put her wagon beside Madeleine's bed and that made the biggest difference. Madeleine sang songs while Sidney talked back to her in baby talk.
After doing that for a little while we put Madeleine in a wagon and my mom pulled both wagons around the unit. She had Sidney's wagon in one hand and Madeleine's in the other and I brought up the rear pushing Madeleine's pump and b/p machine. We made a few laps around and then it was time for Sidney's feeding and nap. Madeleine had to go watch all that done and the timing was perfect. It was not much longer until she was done and could get her IV pulled with just a little assistance from her nurse. We always wait an hour after she is done to watch her b/p, during that time she made many trips to Sidney's room. She would tiptoe in to check on her and she was sleeping peacefully. It was a very long day but a tiny baby sure made it a little easier for Madeleine.
When we got home Little Willie went bonkers - as usual. Andrew was holding him since he was too wild and would knock Madeleine over. She was wobbly so we were carrying her everywhere but he would jump all over her trying to get some love.

She slept good last night and woke up happy and hungry. Her mood has been pretty good and we have played loads of games all day. She actually wanted to do things instead of laying in bed doing nothing. I kept telling them that it was not like her to want to just lay there and that something had to be wrong.

Tomorrow is her Little Dolphins group and she already told me that she plans on checking on little Sidney before and after her meeting.

My Aunt Pat should be home tonight sleeping in her own bed. I have not called to be sure but the plan was to get a PIC line in and send her home with IV antibiotics for a while. She has a really nasty staph infection in the lining of her lungs and it is going to taking some powerful drugs to fight it. They finally figured out that the mass in her lung is a staple. It has calcified and made a blob of calcified stuff containing a staple. It does not look nice or sound nice but they seem to think it is not going to be a problem. The main thing for now if getting that staph taken care of.

Thank you all for checking in on our girl. Please stop in again soon.
Nighty night,
xxxooo

Sunday, January 23, 2005 8:36 PM CST

There's no place like home - there's no place like home!

We are home. It was about 6:30 pm when we finally made it in.
Madeleine is already in bed asleep. She closed her eyes as Terry was laying her down and she rolled over and never made a peep. We were watching her blood pressure all day since it was on the high side before they even started her infusion today. When our nurse had to stop the infusion because her b/p got to high, she cried and was crushed because she wanted to go home.

There is loads to report in on but I am beat so I promise that tomorrow I will update on our clinic visit and also on some other things. Plus Madeleine met a new friend this visit. Her name is Sidney (it's not spelled that way but it's pronounced the way I spelled it) and she is a very sweet 5 month old patient at the hospital. When Madeleine saw this little cutie she went nuts and had a very good time helping take care of her. I have some photos that I will put up to show you Madeleine feeding her this morning at the nurses station.

I want to thank Malina and Mikaela - aka Madeleine's Wishgranters. They popped in Saturday and surprised Madeleine. She was thrilled to see them and then took the girls on a tour of TSRH. I will tell all about that tomorrow too!

Anyway, the girl is tired and sore. She has had pain and stiffness in her legs all day. I hope a good nights rest in her own bed will help her. We were up quite a bit last night and she did not rest much. She was not crying but she was uncomfortable.

Thanks for checking in - please stop in tomorrow for some adorable photos of Madeleine The Babysitter.

love you all!

Thursday, January 20, 2005 8:45 PM CST

Just a few minutes ago I was packing for tomorrow morning with our bag sitting on the bed. When I went over to put Madeleine's pajamas into the bag Little Willie was laying half into it. He was laying flat against it with his little nose pointed at me. Poor puppy - he takes it hard when we leave with bags.

Madeleine is in bed sleeping -HER bed. Last night...wait, this morning at 4 she was crying out for us. Terry put her in our bed and she was having pain in her legs and feet. I rubbed them with her calming lotion until she snuggled into her pillow and shut her eyes. This is happening more and more. Tonight she soaked in a warm bath because she said her legs felt "crampy". She is such a smart little girl - earlier she started drinking more water. Trudy tells her that before an IV start she needs to have been drinking lots of water. We are going to miss Cinda, she is going on the annual hospital ski trip.
If anyone is in the area please call and maybe come by. Saturdays at the hospital are super quiet and Madeleine will get stir crazy.

Since I almost never find time to get near a computer I will ask my mom to put a message in the guestbook tomorrow passing on any info we get from our clinic appt.

Thanks for checking in on our Madeleine.
love, xxxxoooo

Wednesday, January 19, 2005 8:11 PM CST

Happy 1st birthday Little Willie!
We had a special family dinner tonight for him but he had his food and we had ours. He sure wanted to sneak a bite from Madeleine's plate but people food makes him very ill -yuck.

Madeleine had a fairly good day. We had a big standoff over taking her medicine but I won in the end and she took it. I am the one that ends up exhausted and good for nothing after one of these marathon standoffs with her. She looked at me like I was crazy when she finally drank it down and gave me a very bored look.

We stayed in today and she rested and played quietly. She will go up and down the stairs a few times but gets tired and then wants to be carried up and down the rest of the day.
Tonight at dinner she announced that she was going to tell us all a story. She put on sunglasses and brought out her This Old Man book. Then she "read" it to us all. When she was done she took off the sunglasses and waited for applause. She is so silly!

She is still struggling with weakness and fatigue. Her energy comes in small amounts and then she has to lay down and rest. The prescription for her rash does not seem to be making a difference yet. It is still very red and blotchy.

William came home today with a super report card! He has all A's and is doing a great job. I am so proud of him and he is going to have a project in a science fair that is coming up.
Andrew had excellent grades also - he is always buried in work from his classes. I am thrilled by his recent choices in classes - he seems excited about the subjects so I know he will do well in them.

Last night Andrew, Terry, Madeleine and I were in the car and Andrew was talking to Madeleine. It was late and she was very tired. She looks at Andrew and says "hush up Andrew, you are freaking me out". It's a good thing she is so articulate because it's hard to hold your own with two older brothers in the house.

Good night!

Tuesday, January 18, 2005 4:33 PM CST

This is going to be a quick update because I am hoping to get out the door and run to Baylor over in Dallas to see my Aunt Pat. She is not feeling well after they scoped her lungs earlier today. We hope to have some answers tomorrow on what is going on with her. Please be thinking of her.

Madeleine's MRI showed that she does have new disease activity going on in her muscles. They are setting her treatments back to the every other week schedule. I am already tired just remembering how tired we were last year. It was starting in March & April that she was in the hospital every other week for treatments. This time she will get IVIg along with solumedrol - I hope it makes a big difference. When I told Madeleine that she was going in for pulsing on Friday and that we were going back to every other week she rolled her eyes at me. "This is all sooooo boring MOM" Is that a typical Madeleine response or what?

She did feel like going to dance his morning. I got a promise that she would rest during a dance or two but I doubt she did it. This little girl is a toughie.

I have some darling photos from her meeting with the Wishgranters and I will try to get them up later tonight or tomorrow. If it's late when I get back from the hospital seeing Aunt Pat then it will be tomorrow.

Saturday, January 15, 2005 9:48 PM CST

In one word...WOW!

I don't know where to begin - can you imagine that I am speechless?

Madeleine was waiting and watching for Mikaela and Malina to arrive. She would go from the window to the door then back to the window. She sat on the sofa for a while and then laid on her tummy on a pillow facing the door - never taking her eye off the door! We knew the moment they pulled up because she let out a squeal. She stood at the door and watched them unload - and Madeleine let out a big squeal "they have a HUGE Madeline doll!!".
They were greeted by a very excited girl and with kisses from a very excited Little Willie.
I was afraid that Malina may have gotten a real wet willie from Little Willie - sorry Malina!
Madeleine (and Little Willie) felt a connection with her Wishgranters right away. They presented her with a giant Madeline doll that is almost as tall as our Madeleine! She went nuts over the balloons (purple & pink!) and the gorgeous cake. We were then spoiled with t-shirts for everyone, gift cards for the boys, and a special Make A Wish backpack for Madeleine. Wow - we are still gushing over the Madeline! It is huge!
They asked her if she had a wish in mind and she was almost too excited to talk. In fact she almost sounded a little breathless when she was telling them.
She wants to ride in Cinderella's carriage and spend a day at her castle. Mikaela assisted her in drawing picture of Cinderella and her carriage while we were working on details and paperwork. Her request did not seem too big to her wishgranters - I am pretty sure these girls could do just about anything. :)
Thank you Mikaela and Malina. You both made Madeleine feel so special today. I wish you could have seen her right after you guys left. She ran in and changed into her Make A Wish shirt. We tucked her into bed tonight wearing her Make A Wish shirt with pajama pants! At her side is Baby Elvis, Cinda bear, and her new giant Madeline. I bet she fell out within minutes of her head hitting the pillow...probably dreaming of wishes and Disney princesses.
Thank you Make A Wish Foundation and most of all thank you for sending Madeleine the most awesome wishgranters a little girl could have.

I am sure I have forgotten some details. We are all still trembling from the excitement. :)
When we all slow down I will add photos - of course we took photos! Mikaela just sent me the ones she took and they are so cute! The ones of Madeleine with the big Madeline are hysterical!

We did not get to see Aunt Pat today but when we spoke to her she said they were switching up antibiotics. She was not responding to the one they started with and hopefully this other one will make a difference. I believe they are going in with a scope on Monday but I do not have all the details on that yet. She already has a couple of different lung ailments so I am hoping this is just a pneumonia and the IV meds kick in soon.

We had some other exciting news yesterday that I have not mentioned yet. William competed in the ACSI (Association of Christian Schools Int'l) Math Olympics. It was held at an Arlington school and he won 2nd place in his division. We are so proud of him! WTG William!

I am going to get a Diet Pepsi and unwind.
Goodnight!
love,
Connie, Terry, Andrew, William, Madeleine, & Little Willie

Friday, January 14, 2005 10:43 PM CST

Yesterday Madeleine had the MRI that we tried to get back before the holidays. It went smoothly. This time they used nembutal and she tolerated it so much better than what they used before. We are making a note of that for future MRIs. We should have results on Monday.
It all sounds easy right? Yeah, that part was easy but when Terry went to wake her up to get ready to go - hoo boy was she mad. He put her in the middle of our bed where she have me an earful. "I am NOT getting an MRI today. I do not NEED an MRI...this is all YOUR fault! Do you realize that? You did this. My pelvic bone is just fine - just fine and I do NOT need this!"
Don't ask me where that pelvic bone business came from. I tried to explain that they were not looking at the bone, they were looking at muscle. She was not listening because she asked Cinda when we were at the hospital and from her it made perfect sense. :)
The mini meltdown was mostly because she knew she would not be able to eat. When we were driving in she would comment -" ...hungry - I am sooo hungry. Helloooooo - are you listening? You are starving me here...helllooo.."
When we arrived at TSRH she was all smiles. Cinda was introduced to Madeleine's new bear Cinda Rella and we were right back to get ready. We were all good until she caught a taste of the nembutal - it took some work but she took it. It made her so funny. She was playing with Cinda and we watched her get more loopy as the minutes passed. They were talking about Disney World and Cinda would tell her something and she would get these exaggerated reactions. She would jump a little and her eyes would shut tight and she would shake her head. They asked us not to talk to her and see if she would go on to sleep but she kept asking Cinda to tell her more about Disney World. At least it made her very sweet and funny - I will take that any day over angry and screaming.
They told me to expect her to be groggy most of the day. Ha ha ha ha. She came out of the MRI area awake and never went back to sleep. We did not want her running around because she kept staggering and falling. She did not care - she was off and going. Bring on the food!
I was relieved though because that meant that at bedtime last night she was tired and ready. It was a peaceful night but she was not up to school today.
Her legs were very weak so I let her rest until time to go back to TSRH for her eye appointment today.
The good thing about going back today was she got to see Brianna and play with her for a little while. Her eyes look good and it was a quick visit since they were ahead of schedule today. It gave her and Brianna some time to play in Child Life before we had to get back home. Brianna was getting her 3 day of solumedrol and starting to have a 'roid rage so it was the perfect time for us to hit the road.

Madeleine has felt ok except for the weakness and fatigue. Thankfully, her stomach has not been hurting like earlier in the week.

That is pretty much the Madeleine update for tonight. In other news, my Aunt Pat is in Dallas at Baylor with pneumonia. She has a history of all sorts of lung issues which makes it hard for her to get over things like this. I spoke to her tonight and they think they have the right antibiotics going so she should be back on her feet quickly.
That is all the allowed family hospital stays for now people! Pat - get your backside well and stay that way! None of the rest of you - and you know who you are - better even think about getting sick. Little Willie was throwing up yesterday but he probably ate a Polly shoe or something. It's just that time of year I guess but that is it.

When Madeleine was heading off to bed tonight she reminded me that tomorrow is her Wish meeting. She said that we had to get up and ready bright and early. I am pretty sure she ignored me when I told her they would not be coming bright and early.

Have a wonderful weekend - ours is looking good so far!
xxxoooo!

Wednesday, January 12, 2005 7:42 PM CST

The last two nights have been blissful! Madeleine has been taking her "Aunt Dana's Magic Tummy Medicine" aka gripewater and it has helped her stomach pain so much. She woke up yesterday feeling more like herself so we got dressed and went to dance class for the first time in ages. It was wonderful to see all of our special friends there and for Madeleine to move her body a little bit. Of course, at the end of class she jumped into my arms and wanted to be carried. After dance she came home and had her usual - lunch in my bed. She was laying there watching TV when she said "I think I am going to take a little nap"
uhh - what? This child never naps! I look over and she smiles at me and says "I wanna go to Ceramic Antics!"
Yay! Not just one but two outings for the day! This was a good sign. So we went up to hang out with the girls at Ceramic Antic. Madeleine has so much fun there and wants to paint everything in the place. She makes me nuts because she knows where they have snacks stashed for their own kids - guess where she heads within a few minutes of arriving? Yep - she wants snacks. I guess I will hit the grocery store first on our next trip over there.
Sarah and Beverly are adorable and they have darling families. Since Madeleine and I were up there so much before Christmas I think we met every one of them. Beverly told me a neat story while we were there - as it turns out they had a friend in their neighborhood with a sick child. This child had a caringbridge page and she learned about baby Allie Scott through that page. Then from following Allie she started following Sam Eisenberg --- see where this is going? Isn't that amazing? I am telling you my game idea of a six degrees of Sam & Allie would be a hit! You can connect just about everyone you meet back to those two awesome kids in one way or another.
We ended up painting a big batch of stuff with some fun new paints they just got in. I cannot wait to see how they come out after being fired. The paint has stuff in it that blows up in the kiln and so the result is a marbled looking finish. Madeleine painted several pink speckled
Valentine pieces. You would not have guessed that she painted something pink, huh?
If you live in Arlington or Mansfield please stop in some time and tell them Madeleine & Connie sent you. Ceramic Antics is at 222 N. Walnut Creek Dr in Mansfield. You will not only have fun painting but the entertainment is priceless! It is never a dull moment with Sarah & Beverly around! You can imagine how crazy these two can get with Madeleine in the house.

After all the activity the girl slept like a baby last night. This morning she woke up feeling good so we headed for school. She was so excited to see all her friends! Mrs. K was out with her son who is not feeling well so we hope that he gets better soon. If you are reading Mrs. K we miss you! Give Ben a hug! Madeleine did great and almost made it for the whole morning. I left there at 8:30am and at 11:30 my cell rang - she was very tired and wanted me to get her. Thankfully I had just pulled into the school drive thinking I would just wait there until 12:00 when she got out. I went in and she jumped into my arms - just like yesterday. She was very tired and I think it was hard for her to admit it to Mrs. Jackie that she needed a rest. We came right home and she crawled into my bed.

Tomorrow we are going to get that MRI we tried to get before the holidays. This time she is going to get it one way or another. The bad part is not letting her have any food or drink. This child loves her breakfast - in fact she has several small ones on an average day.

Thanks for checking in on our girl tonight. Also, thanks for all the wonderful messages in her guestbook. She loves making everyone read them to her over and over. Then she remembers who left what message and if you don't get it right she lets you know it!
We hope everyone is having a great week!
xxxooo

Monday, January 10, 2005 8:40 PM CST

Madeleine's tip of the day:
"If you are stressed or feel bad drink some hot water. It always works for me."

Note from mom -
I mentioned to the little diva that she might want to consider warm water instead of hot. She replied "I can do that." She told me this out of the blue while we were driving today. I am not sure if it works but she claims that it does and she has tried it.

The last two nights I have watched way more of Nickelodeon and PBS Kids than I care to.
I think I have pointed out before that they just repeat the same shows over and over -- all
night l o n g. argh! If I switch to MSNBC she jumps awake - even if the sound is off.

Our little night owl woke up at 1:30 am Sunday morning. I will take the blame for it because Terry came in from work at 9pm and asked if I wanted to watch a movie. Andrew has been wanting us to watch Anchorman since it came out on DVD and so why not? Terry went to get it and I reminded him that it was closing in on 10pm and every time we stay up late Madeleine gets up in the night needing us. Now, first of all - I regret saying that...I really do. Because at 1:30 I was so sleepy it was hard to stay awake and get Madeleine to tell me what was wrong. Second of all - it was a really bad movie. There are maybe 2 funny moments in it - maybe I just have a bad taste for it because of the lack of sleep since I saw it but I don't know.
Anyway, here we are at 1:30 am and she cannot or will not tell me what is wrong. We put her in our bed and we lay there. If I closed my eyes she groaned at me - please! Don't go to sleep. At 2:30 she told me that she wanted spaghetti. Unfortunately at 2:30am I am not going to make spaghetti. I cannot spell spaghetti at that hour - much less cook it. We sat there and did nothing. A couple of times Terry started snoring and Madeleine would put both hands over her ears and shriek. She did not have to use words - she just squealed an awful noise and the snoring would stop. Why didn't I think of that years ago? :)
This stubborn child did not go back to sleep. She stayed awake and finally just after 4am she told me she would settle for Pop Tarts. That is something I can do! I got her Pop Tarts and closed my eyes. Sunday was sort of rocky since she was so darn tired.
Then Sunday night we talked about how important it was going to be to get some sleep if she was going to be able to go to school this morning. I blame that stupid movie again!! No, we did not watch it again but I might not be as tired if I would have gone to bed Sat. night instead of staying up.
Terry checked in on her later Sunday night and she was sleeping peacefully...until 2am that is! She was back in our bed with all her gear. I guess we will try again for school on Wednesday. She did not wake up very happy but got better when I told her we would go to Build A Bear. My mom gave her some gift cards from there for Christmas and we had not been up to use them. It gave her a chance to get out and move around a little and she needed that. She was weak and was not able to walk but part of the time but she did great.
It was fun and she had a ball picking out her bear and dressing it. She named it
"Cinda Rella" after her Child Life Specialist Cinda. This is the first time I can remember her using a name besides Madeleine. Her other bears have names like
Mademoiselle Madeleine 24 and Mademoiselle Madeleine Elizabeth 12.

We are going to start slow tomorrow. I am not going to watch any movies and will definitely not stay up late. Then if she can sleep through the night we will try for dance class. She can sit out a few songs and just do what she feels up to. She has had quite a bit of stomach pain the past couple of days. Tonight she asked for Aunt Dana's magic tummy medicine and she hates the taste - for her to ask I knew she must need it. It seemed to help but I am going to call and speak to one of her nurses about it tomorrow. It is the type of stomach pain where she would lean over and scream so it must be like cramps.

I am going to bed - good night and sweet poodle dreams to all!
xxxooo

Saturday, January 8, 2005 9:27 PM CST

Good evening!
I want to share with you a portion of an e-mail that Mikaela, one of Madeleine's Wishgranters, sent me this morning.
Mikaela - if you are reading, we cannot wait to meet you in person!

Here is what she wrote:

It was so wonderful talking with you last night. I truly feel honored to be one of the Wishgranters involved with Madeleine's wish. I promise that I will do my very best to make this an amazing experience for Madeleine. She certainly has earned it!

I also wanted to tell you what a privilege it was for me to be mentioned in last night's journal entry. You recalled everything beautifully. There was only one little deviation from what I told you. I'm sure it was my fault, I was so excited that I was talking a thousand miles an hour. I'm only letting you know this because I think it makes the "story" even more amazing. I first received the list of available wishes in mid November, not long after my Wishgranter training. I looked over the list, saw Madeleine's name, age & location and just felt that she was the "one". When Dana E. wrote about Madeleine in her journal in December, I had no idea that it was the same Madeleine that I had selected. Wednesday, when I received Madeleine's information and Caringbridge site, I immediately looked her up and was shocked when I realized that she was the same Madeleine that was connected to Sam. It literally gave me goose bumps. I believe in my heart that, for whatever reason, I was meant to be involved with this wish. The world just got a littler smaller, didn't it?

Please let me know how Madeleine reacted when she learned that her wish experience was beginning. I wish that I could have seen her reaction.
==============

Her reaction was sheer joy. I mentioned to her that someone called for her last night after she was in bed. She asked who and I told her that she could guess. That it was someone that she had been expecting to call. She squealed "Make A Wish Foundation called me!!"
Then she did a funny little dance and Little Willie went nuts with her. When everything calmed down I told her that we are working out a date and time for us all to meet.
A little while later I told her about how Mikaela knew Aunt Dana and Sam. Her little mouth was as wide as those big blue eyes. So, she said that she is going to have the bestest Wishgranters in the whole world. Yes, my tiny girl, you do have the "bestest" Wishgranters. In fact one was "handpicked" for you.

Today we celebrated our dear friend Heather's birthday. I was worried that it would be too much for Madeleine but she did great. In fact we put a pair of ice skates on her and I skated her between my legs a couple of times around the hockey rink. I skated bent over and wrapped my arms under her arms to hold her up. I did not want to pull hard on her little arms and her right hand is still stiff and sore. All she had to do was - well, nothing. I skated and she laughed. We carried her when we were off the rink and she only had skates on for a few minutes. That was she felt like she was a part of things and not left out. It was great to see all the girls - Julie, Amy & Heather!

The little miss had fewer mood swings today. She is eating less and getting back into her usual eating habits. Most days she grazes off and on all day long in small amounts.
The last two nights she has asked to go to bed at night. That is not normal for Madeleine at all. Tonight she told me that she was so tired and could she go on and get into bed early. It was 6:55pm and her bedtime is 7pm. Yes, I told her early would be just fine. :)

Terry is not home yet to proof this and I am late for a date with the bathtub! You all probably know that I type almost as fast as I speak - and that is about 110 mph! Hopefully I have not left a page full of typos.

Have a great evening -
xxxooo!

Friday, January 7, 2005 10:18 PM CST

I am sitting here so excited that I am just bursting at the seams! No weight jokes from the peanut gallery! This is such an exciting way to end the week. Do I have you in suspense yet?? I hope so!
Before I get to tonight's news let me tell you how our girl is doing.
She rested peacefully last night and woke up a wee bit later this morning. Her first breakfast of the day was Pop Tarts (better than fries!) thanks to a commercial on Nickelodeon. Have you seen this Pop Tarts commercial for a new flavor and it has a pink poodle in it? The poodle actually speaks in it! Well, Madeleine has seen it several times and this morning it was on and she grabbed Willie's face and kept trying to get him to watch. "look Willie!! look boy - it's so cute!"
Then she declared she wanted Pop Tarts. So, after she ate the four corners off those she wanted spaghetti. Whew! I had some of that left over from dinner last night.
It is a challenge to kept her in food - well, food that she wants.
Other than her crazy cravings she is feeling OK. We stayed in all day again and she rested. I put a big cutting board on my bed and she played with her Pollys, pierced Barbies ears and did her workbooks there. If she keeps taking it easy then she will be ready for school on Monday.
Hey Catherine!! If you and your mom are reading - Madeleine cannot wait to get back to school and she will be ready for a play date too! She misses you guys so much.

OK - now are you wondering about the exciting news?
Late this evening I was in a store and enjoying a few minutes out of the house when my phone rang. It is funny how one minute all I was thinking about was getting into bed and putting this week behind us. I did not recognize the phone number so I am wondering who on earth was calling ....it was one of Madeleine's Wish Granters from Make A Wish! She wanted to introduce herself and work out the first meeting to sit down with Madeleine and talk about wish-stuff. Now, that alone is so special and makes me emotional thinking about it. But, there is more - Mikaela decided she wanted to volunteer for Make A Wish after following Sam Eisenberg's story. She was so touched by how special Make A Wish made Sam's experience that she got involved. I hope I am getting this all down correctly - if I mess it up I will let you know later. Mikaela found her way to Sam's page from following Allie Scott's story. Now, Mikaela is volunteering for Make A Wish and the new group Heroes for Children. When Mikaela received her list of available wish kids from Make A Wish she saw Madeleine's name and decided that was who she wanted - it was someone she "knew". I am so touched that is why she chose our girl. Can you believe that it is such a small world?
One day there will be one of those Kevin Bacon games but it will be 6 degress of Sam & Allie.

I can imagine how big those blue eyes will be when I tell Madeleine in the morning. She will go nuts! Her reactions are always so animated and genuine.
I promise you guys will have a front row seat as her Make A Wish experience unfolds.
Sometimes this is not at all real.

Before I say good night I want to send a shout out to my dear friend Donna Cody. She sent a wonderful care package of goodies - some for us and some to share with our friends at TSRH. Thank you so much Donna - you are a sweetheart!

Now I am going to crawl into my bed with a tired black poodle.
xxxooo !

Thursday, January 6, 2005 8:04 PM CST

Brrrrr! We are having the kind of weather that you just want to stay indoors with a warm blanket. What do you think Madeleine did today? Yep, we stayed in and she was snuggled in her blankets. She had a rough start at 6:30 am this morning - too early! Terry put her in bed with us but she was not interested in sleeping. I vaguely remember her insisting on french fries and we both tried to explain to her that we did not have any potatoes...thankfully! I was not ready to jump up and fry them that early in the morning. She would not consider hash browns - they HAD to be fries. Terry ran to Jack In The Box because they are one of the few places that will make fries at that crazy hour. She was pleased with them and that was the first of her breakfasts this morning. I know that was not a healthy food choice for her but we were too tired to let her get into a full blown steroid rage. She mellowed out as the day progressed but is still weak and laying around.

There is no way she can go to school tomorrow so we will wait and see how she does over the weekend. She wants to get back as soon as she can and is missing all her friends and Mrs. Klimek in a big way.

The Docs said not too expect too much from her IVIg treatments yet. It will take a few before we can tell a difference. They did expect it to help the skin involvement and her face was better. Tonight it did not look as good as yesterday but it is still too soon I think. It is upsetting to see her so weak. Carrying her it really feels like she is limp like a little rag doll.

Next week we have an appointment to get her eyes checked again - they are watching for cataract development or any of the other fun side effects that come with large doses of steroids. She will also get an MRI.

Thanks for checking in on our Madeleine.
Have a great evening!
XXXOOO

Wednesday, January 5, 2005 9:02 PM CST

There's no place like home. I would be clicking my ruby red heels but it's too darn cold. It was a shock to the system when I went outside to load the truck this afternoon. It was close to 30F and the winds were sharp. My jacket was in my truck - yike!

Madeleine got her IVIg without any major complications. The infusion was just under 5 hours. So, Monday and Tuesday she received her solumedrol over 4 hours. Then a push of benedryl over about 20 minutes then her IVIg. That made for a couple of long days. She did run low grade fever from the IVIg and complained of a headache after the Tuesday infusion.
Tuesday was just a bad day for her overall. She had a crying spell that lasted around 2 hours and that pretty much ruined her day. She was exhausted from crying and the meds and wanted to stay in bed. Another thing what was different is she did not want to get into her wheelchair to get out of the room during her pulsings. Normally she is in her wheelchair the whole time - this time she wanted to lay down. We put her in a wagon and pulled her to Child Life laying in it with lots of pillows to cushion her. She even played on the computers from the wagon. It was hard to see her feeling so lousy but today she was much better. This morning she woke up telling me that she felt better and wanted to go play. She was delighted to see Ally the big white standard poodle that comes to TSRH to see this kids. We watched Madeleine and Ally play until it was time to start her infusion. I took some photos of them playing and will get them up soon.
The highlight of the day was definitely our lunch with Jennifer & her mom and Brianna & her mom! We had a fun girls lunch in Madeleine's room. Madeleine and Brianna piled in Madeleine's bed and played while we ate. It was great to see "our gang" and catch up. If you guys are reading - thanks so much for coming to spend time with us today.

This is the first time that I can remember Madeleine not crying most of the way home after getting her medicine. She watched a DVD and did not have much to say. I fed her dinner in my bed and she rested there until 7:00pm when I carried her to bed. She was so tired that she did not talk to me. I put her on her lambskin and she cuddled up and closed her eyes.
Little Willie stayed on my bed with her until she went to her bed. He missed her so much and she had a sweet conversation with him when I was getting her food ready. She was talking so soft and tender telling him that his mommy (herself) had missed him so much.
Since she is in bed I need to go unload my truck and settle back in. It feels like we have been gone for a week and it was only 2 nights. Andrew and William have updated me on all they have been doing. Andrew had to give me the report on how much of a pain Little Willie has been. :)

Special thanks so my mom for all she did for us this week. She went above and beyond yesterday when Madeleine wanted Taco Grill rice. They were not open and she waved in the window until they came over to tell her they were closed. She told them what she needed and it was for Madeleine etc. The rice was packed up without a hitch.
Thanks to Heather for coming up and for all the darling outfits! They are all so cute and oooh do you know this girl or what?
Julie - the jacket is precious. Madeleine was so glad to have it especially when it was time to come home this evening.

Also thanks to our gang at TSRH. You know who you are and you always work so hard for our Madeleine. We will never be able to thank you enough for all the wonderful things you do.

Sunday, January 2, 2005 9:16 PM CST

Good evening!
I was going to update with new photos tonight but the system is really pokey and I can't sit here all night. When we get home from the hospital I will get them uploaded and added in.

Madeleine has had a pretty good day. We took her over to see my grandmother this afternoon for a little while. Since she is able to tolerate her antibiotics orally they moved her back to the nursing home. The rain was coming down in buckets when we got there so we pulled under the driveway and ran her in and straight to my grandmothers room. We have all been very careful to keep Madeleine away from any flu bugs. She did not want to stay long since she has not felt good so we made it a quick visit. I am so glad my grandmother is back on track and home again. Her mind is moving really slow but with her history of strokes and being 89 we cut her slack. :)
My Aunt Pat had been there before us and left me a tote bag from a recent trip. It's nice and roomy and the perfect size for......Little Willie! He was with us so I put him right in and put the bag over my shoulder. It gave my grandmother a good laugh but Andrew thought it was a crime. He said I was trying to make Willie look like a girl so he took charge of him until we were loaded up to come home. Madeleine thought I should try and sneak Willie into TSRH tomorrow with us "you know he misses his mommy sooooo much MOM". I am afraid our nurses would notice him there.

Before I forget I want to tell you about a friend of ours. We pretty much unofficially adopted her ages ago! Heather has her Stars season tickets near ours for a few years and has a close connection with Madeleine. A couple of days ago we received an invitation to a party some friends are giving in honor of Heather's birthday this coming weekend. The best part is that on the note she requests that instead of gifts for her to bring new toys and games that will be donated to Texas Scottish Rite Hospital for Children. Before Heather was working full time she would spend all day with us when we were inpatient. The only time she has not been able to come up and help me during hospital stays was when she was sick once. I am so proud of her and if you are reading Julie - RSVP us. We will be there with our donation toys. Thanks to all of you for the invitation and for gathering donations!

I am going to call it a night and get our bags ready. If she will let me then I will try and let everyone know how things are going from the hospital. Since she has never had the new medicine they will infuse it very slow to lessen reactions. I hope it does not make her as moody as the solumedrol does. Hopefully we will have a productive meeting in the clinic and get some relief for Madeleine. She has been struggling so much - every day it seems she is weaker.

love to all -
xxxxoooo

Friday, December 31, 2004 9:21 PM CST

Today we had an awesome surprise! There was a PR agent taking notes and photos the day Madeleine visited Chef Carlos at The Melrose Hotel. We had no idea that she was in The Mansfield News Mirror until seeing the guestbook message from JoAnne in Mansfield.
Thanks JoAnne! :) Madeleine was freaking out until I could run out and get a copy. There is a gorgeous photo of Madeleine and Chef Carlos along with a very nice article. It is on page 8a but it is not on their website - I just checked.

Believe it or not I had typed a message about my feelings on saying goodbye to 2004 and Madeleine started screaming from her bed. To make a long story short, I lost the whole post and I was not even writing it on the caringbridge site. I was writing it and then going to copy and paste so that I would NOT lose it. argh!! It was at some point during Madeleine telling me that I was rude and that I lived for being that way. OK.
She feels awful and we have had spells of this. She sobs and cannot tell us what is wrong - she just feels BAD!
I am so bummed that I lost all my message. I think in it I managed to sum up how 2004 sucked and worked in the things that did not suck.
Almost all last year I had this notion that I would wake up one morning and the sun would be shining. I would get up and Bobby Ewing would step out of the shower and Madeleine would be completely well and good as new.
Tonight I just wish she could stop crying and have some relief.
Terry's turn with her is just about over and I will have to take mine. We are trying to share the love tonight. ha ha
===========================
OK, I am back. I had seriously thought I would just close this, copy and paste or just close it and update tomorrow. Now I am glad I didn't. Let me explain...

I have had a pair of diamond stud earrings for almost 11 years. My mom had given them to see for a milestone birthday - I am pretty sure we don't need to talk about which b-day. Got it? Good.
Awhile back I lost one and and we searched around the house and found it. It was in a place we had already looked two or three times. It was crazy but I did not care - we found it!
Then, about 10 days before Christmas I noticed one gone again. I was so mad at myself for losing one again. How could that have happened? After this many years and I wear them just about everyday..you could call them my everyday earrings. We searched and searched. Finally we figured they were in the poodle. He eats anything and everything. If there are Polly shoes, legos or crayons within his reach they are history. They are in the poodle and so was my earring! Or so we thought....it never showed back up -if you know what I mean.
It was so close to the holiday and things were crazy. I just hoped that it would turn up at some point or I would figure out replacing it next year.

A few minutes ago we got Madeleine to stop yelling. It was like going from a 10 to a 5 on the volume control. She was doing that sobbing thing and telling us she wanted to watch her Garfield and Friends DVD. OK, we can do that just stop crying...then she says she will watch it in her bed - YES!! She stopped begging to sleep in our bed tonight. Any night that she sleeps with us is spent with PBS Kids on all night and she naps while I sit there and watch PBS Kids. When she offered to go to bed with her DVD I grabbed that and Terry grabbed her. I coaxed another dose of Tylenol into her and we almost ran back to her room. I was standing on the rug in her room and I stepped on something. It felt small and strange and like something Little Willie would eat if I left it there. I bent down and picked up .........my earring!! Who knows how it got there and I don't care - I cannot believe it!
Terry and Madeleine were staring at me, they could not believe it either. If Madeleine had not had a screaming melt down and then agreed to go back to bed I might not have ever found it. Now 2004 can be over - done - finished!
Bring on 2005! We are ready for it. Hugs and loads of thanks to everyone that has helped us and followed Madeleine's journey this year. Buckle your seat belts and get ready because we are going to take on 2005 like no other year!

Poodle kisses and Garfield dreams for everyone!
xxxxxooooslurp!

Wednesday, December 29, 2004 8:54 PM CST

Did you ever have one of those days where you were sure nothing could go wrong?
Our day started out like that today.
Madeleine had a play date over at her friend Allison's house and she has been counting the days waiting. She got up bright and ready to roll.
Wednesdays are methotrexate days so I got her injection ready while she had breakfast. She decided that she would sit beside Terry and hold Little Willie under the opposite arm. Then she changed her mind...then changed her mind again. You can see these moods coming a mile away. "forget it - I really don't want my medicine today.." I don't like for it to get into a debate with her. You can tell she is feeling crummy when she is like this. Then she pulled a new one out of her hat. "I want to give it to myself!" Well, I have no doubt she can do it - but still! She is just 5 years old!
We made a deal and she held the syringe with me to do the stick then she pushed the medicine in. That worked perfectly (surprisingly) and we were good to go. I was worn out but she felt darn proud of herself.
Terry and I dropped her off at Allison's and she could not wait for us to leave. You are leaving, right? Bye, Mom - I love you. I heard that about 10 times so I think she was ready for me to leave. I had a hair appointment and Terry came along to spend some time with me and he knows the girl who does my hair. We had a fun visit and the time flew.
Before we knew it we were heading back to get Madeleine. She had so much fun and played like a wild woman. We just about had to drag her to the truck and load her in. Then Allison and her sister Lauren hopped inside with Madeleine. :) These guys really had fun!

All good so far - the day was going so good, right? What could possibly go wrong?
When we got into the truck I got an odd feeling. Ever get one of those weird moments just before you find out something is up? I had left my cell phone and purse in the truck since we were just there for a few minutes to get Madeleine. Who would call me with anything urgent in that short amount of time? When I got in and put my key in the ignition I thought - why did I leave my phone in the truck? What if something happened and someone tried to reach me? I look down and there were 4 missed calls. Then I get the feeling that my feeling before was probably right on...something is up! I look and there were 3 calls from my mom's house and one from my Aunt Pat's cell phone. My grandmother - it had to be about my grandmother. Don't start thinking that I am the kind of person that always thinks the worst before anything is wrong. It is hard to explain but with those 2 calling at the same time what the heck else could be up? I called mom's house and she never says hello. "Where have you been??" The nursing home had called for an ambulance to take my grandmother to the hospital. I dropped Madeleine at home to wait with Terry and I headed to the hospital. Madeleine was already looking very tired and she has no business near a hospital emergency room.
Luckily the Harris Methodist HEB hospital is less than 1 mile from her nursing home and she has been treated so well there in the past. When I walked in she was just being taken for a CT of her head. She has had strokes before in the past so they want to look and see if anything is going on with that. As it turns out she had not been eating since Saturday when we took dinner over to her. They became concerned when she started running a high fever and was not able to stay awake for long. She was extremely dehydrated and they pumped the IV fluids in while we waited on results from labs and such. Her heart rate was all over the place - one minute she would be asleep and it would be nice and steady and then it would jump up and go fast. The labs showed definitely that she has a kidney infection and they are doing cultures to see what the heck else comes up. They had already started IV antibiotics and will keep her for a few days to be sure all is good before she goes back to her nursing home.
She had looked so good and was very alert when we were with her on Saturday. It is amazing how quickly things can go bad. We should have more of her results back over the next day or two.
I kept in touch with Terry to see how Madeleine was making out back at home. She had been upset about me having to drop her and run to the hospital and I wanted to make sure she was ok. Since she was worn out from playing she was content laying around and wanted her heat wrap around her legs. I left the hospital in just enough time to get here at bedtime so I could talk to her. She was worried that Maw-Maw was going to go to heaven today and I wanted to be sure she understood that everything was ok. I guess I was not prepared for how Madeleine was going to look after playing hard. She was like a little ragdoll and very weak. I helped her adjust the heat wrap on her feet and legs and we talked quietly for a little while. She was relieved that one of her own nurses was there today for Maw-Maw.
When I walked into the ER the first person I saw was Nurse Rob from TSRH! He works some over at Harris Methodist HEB and it was wild to see him standing there. We both asked each other what we were doing there. He was not taking care of my grandmother but that's ok. Madeleine was just convinced that it meant she had one of HER own there taking care of things.

Oh well, just another crazy day, right? In a perfect world they will give my grandmother the right medicine and get her back on track. She is 89 and a cancer survivor so when she gets sick it is a concern. This woman is so strong though and I know she is not going to give in to any stupid infection. She is not aware of Madeleine's condition. We have not told her since there was no point in upsetting her and she may not totally understand. If Madeleine could have gone up there today she would have organized that whole ER and been taking care of everyone that came in.
She keeps reminding us that she can do anything now! She is FIVE years old! Terry and I laughed this morning because it feels like yesterday she would reply to "how old are you" with "I am 99 cents!".

Before I close for the night I want to send a shout out to the Vermont fan club girls! Linda and Elizabeth you guys rock! They sent Madeleine the most adorable pair of pink suede Ugg style boots. She had a fit over them and wore them to bed last night and to her play date today. The chocolate coins are a big hit too. She had some over at Sam's house and had been asking for more. It was hard to know if all the squealing was over the boots or the coins. Thank you so much! I wish I could give you both big hugs in person. You know how much you mean to all of us here.

Hey!! To Stephie! Girl, I am so glad to see you check in. I hope everyone there is doing well and I demand that 2005 be smooth sailing. Willie sends you sloppy wet ones!

Mom just called and she was leaving the hospital. They are switching to a different IV antibiotic and they got my grandmother tucked into a nice cozy room. A few years ago when she was inpatient there we thought it was a nice hospital so I am glad they got her there before it was too late. Mom said that she was even more alert before she left and had started to question the nurses about what they were doing. The tech had drawn blood several times from her right arm and that is a no-no since that was the side she had a mastectomy on. She has never said a word about it before but caught them on it tonight. This is one tough old broad! She never ceases to amaze us by how strong she is..maybe Madeleine gets some of her strength from her.

I hope we all have a more peaceful day tomorrow.
Goodnight and poodley dreams to all.
xxxxoooo

Monday, December 27, 2004 9:09 PM CST

We made it! Christmas was very nice this year. The kids had so much fun with their gifts and we managed to keep things fairly calm and peaceful. I want to give my love and thanks to the family members we were not able to see over the weekend. A few had colds and other bugs that would have been a serious set back for Madeleine. So, thanks so much - I am sorry we missed you guys.
I guess I should get over feeling bad because we cannot do something or because we must avoid colds and the flu. We should just be grateful we have our Madeleine and work together on her treatment and obtaining remission.
She has continued to be weak and not have much stamina. We are trying to get her to take things slow and easy. We are just a week away from treatment and that should give her a boost for a little while. She complained of pain quite a bit during the cold spell we had and she has kept her heat wrap close especially at night. On both Saturday and Sunday she went through crying spells. She felt so miserable at times that she just screamed and cried. On Christmas I think that she was just worn out and that contributed to her all out crying. Then she got more miserable because she was crying and could not stop. Thankfully she had a full and fun morning before she felt so bad.
I spoke to the clinic this morning and we are just keeping in touch until next Monday. They are eager to see what kind of response we will get from IVIg. She has really struggled since we tapered her solumedrol pulsing to every 4 weeks. When she got it every 2 weeks and even every 3 weeks, she did so much better. The doctor is just concerned about her being steroid dependent and wants to try and stick it out if she can.

Tomorrow we will be over at the hospital in the afternoon for Little Dolphins. Madeleine always gets excited about going. This is her support group of little girls that all have similar chronic illnesses. It will be nice to sit and talk with the other moms. We could talk for hours if they let us. I have learned so much from the moms that have been doing this for years. They are incredibly strong women and each one has a special place in my heart. Madeleine and I hope that we will see Brianna and her mom there too!

I have a couple of "Madeleine moments" to share from the past couple of days.
In the evening on Christmas we went to my grandmothers nursing home to take her dinner and gifts. We went in separate cars so that Terry and I could bring Madeleine right back home and to bed. Mom and the boys would be able to stay and visit and not have to rush out -- this was after Madeleine had started her crying marathon that afternoon. We arrived a few minutes before the others so Terry let Madeleine out of her car seat while we waiting to all go in together. Madeleine looks over at her dad and says "What is your explanation for this?" We were silent for a minute and then Terry tells her that he does not have an explanation for anything at the moment. Then I asked her what it was she wanted an explanation for - because she had come out of the blue with this. Her reply was "I don't know. I just felt like saying that." OK
Sunday she was cooking with mom at her house. She always puts Madeleine up on the counter while they work. Madeleine had been sitting there getting into everything (like usual) and then she tells mom "let me show you a little trick I learned back when I was in preschool.." I wish I knew where she gets this stuff. It was something you really had to be there to appreciate how funny she can be.
Little Willie manages to get to any food placed in his reach. Madeleine caught him eating from her plate and she says "Little Willie Elizabeth!! Get out of that!" Her name is Madeleine Elizabeth so she thinks everyone's middle name is Elizabeth. Willie also scored a feast from a container of Cool Whip. Nothing like white whipped cream all over the mouth of a black poodle with a bad digestive system.

Just before Christmas Terry found a story that ran in the Dallas Morning News around Thanksgiving. It was about a family with a child suffering from a rare disease. They were told he would not survive for long and that this condition is always terminal. These parents and their support network hosted fundraisers and raised 2 million dollars. With that money they found a researcher and now they may in fact have a cure. The drug is still being tested but the story made it sound like it is very promising. Isn't that amazing? The fact that they may have made this happen with a relatively small amount of money is incredible.
I know,I know -before anyone corrects me, 2 million is not a small amount but when you are talking about this sort of thing it is.
The story has made us all look into more research. Where and who are doing research on dermatomyositis? Most important, how do we get MORE research?? We are kicking around ideas and would love to hear from anyone that has information in these areas. Terry and I are searching out all the information we can find here on our end.
Maybe 2005 will bring a cure for dermatomyositis.

Thanks for checking in on Madeleine.
Tonight we send you all big sloppy wet poodle kisses from Little Willie....without Cool Whip.
xxxooo

Friday, December 24, 2004 8:29 PM CST

Everyone here is finally settled in for the night. The boys are playing quietly since Madeleine is tucked into her castle bed. Terry and I let each one open 1 gift before bedtime. That turned into 2 gifts opened before I could say no..then Madeleine turns on that Madeleine charm and she actually opens just one more. The boys stood tight at 2 and decided to wait until morning for the rest.
We went out to my dad's for lunch earlier today and had a very nice visit there. They were at their house that is about 1 hour from us and the drive took a toll on Madeleine. She was good though and took it easy while we were there. I did not want her to get too tired and not be able to sleep tonight.

Her reactions opening gifts is so sweet and genuine that it almost makes me cry. One of the gifts she opened tonight was from Grandma & Grandpa in MI and it is the old house in Paris set with Madeline and accessories. She squealed and could not believe that was what she got. "I can't believe I really have this!!"

One more Madeleine story from today - I was putting on makeup this morning and she was playing with her Barbie Smart stove set. She brings me a plate of something she had "cooked" up and I declared that it was the best food and she was such a good cook. She says "oh, of course I am a good cook. I went to cooking school when I was younger and learned everything."
I love that - when I was younger!

Merry Christmas from our family to all our friends and loved ones.
I hope everyone has a peaceful and safe weekend.
All our love,
XXXOOO

Wednesday, December 22, 2004 2:27 PM CST

Only 3 days left! yike!
The shopping is done but the gifts are far from wrapped. My little helper gets tired too quickly and then wants me to read, play, do puzzles, or hold. We did wrap 5 gifts and Madeleine had to put them the back of her firetruck (pedal car) and take them across the livingroom to put under the tree. It is only about 20 steps across the room but she wanted to do it that way and it kept her busy for a long time with all the breaks to rest in between. Picture the little girl in her pink poodle print nightgown, velvet pajama pants and Rudolph socks.

Her MRI yesterday did not happen. We had her all set in the machine and they were halfway through the first image when she freaked out. The headphones had slipped down on her cheeks so she was frightened by the banging. I did not think much about it until last night but she has been sensitive to loud noises lately. It would never bother her before but lately she goes nuts just at the sound of a flushing toilet. She runs from the bathroom before you flush. Cinda was awesome and we worked with her to try and get Madeleine back on the table but it just did not happen.
Sedation was not an option since there was not time enough allowed and she had been eating and drinking. We scheduled for 1/13 early in the morning and will take her NPO so that we can sedate her. I hate to do it since she does not tolerate the sedation well - we will all need a very strong drink by bedtime that night! Maybe I will hang on to my earplugs from the MRI room just for that day! They do have us down to phone if there is a cancellation so that we can get her in sooner. It was something we wanted to get done before her next treatment but that may not happen.
I learned a lot about the MRI dept. at TSRH yesterday. They are one of the few facilities that have these virtual glasses-things (how about that for sounding hi-tech?) that they put on the child and it shows a video for them. Before going in they can select a movie and then watch it in the glasses and hear it through the headphones. That cancels out the noise and distracts the child. It is a very expensive piece of equipment and we are blessed to have it at TSRH! Cinda mentioned that she has spoken to other Child Life specialists that want them desperately for their facilities. If there is anything out there that will make a child more comfortable during a procedure I think TSRH has found it and put it in our hospital.

She was really out of sorts the rest of the day after we came back home. I am so glad she was very happy and feeling good when we first got to the hospital. We loaded her into a big wagon with a big Christmas gift for the Child Life Specialists. She was cute hiding under the big box - it was resting on the side of the wagon and she slid underneath.

Did I mention yet that Madeleine got up around 2 am and did not go back to sleep until 6ish? Please forgive anything that does not make sense or is misspelled because I am not sure I could even find the spell check button. ;) Today is methotrexate day and she gets wired from that - so, no naps in my future. She is not running around wired - she is sitting in my bed dreaming up all the things she wants me to go get. Then if we are playing cards (or any game) she gets tired of it quickly and wants me to do something else. Andrew can usually be bribed for enough $$ so maybe I can work a deal to get him to play Candyland with her next. :)

Our weather is wintery today so we have no reason to leave the house. All the freezing rain will make the roads too messy for me. I don't mind driving in it when we are in Colorado but folks here go too fast on the icy streets for me.

Hope your Wednesday is safe and warm.
all our love, xxxooo

Monday, December 20, 2004 8:05 PM CST

Only 5 days left - am I ready for Christmas? No!!
This morning when Madeleine was snuggling with me in bed I told her how we were going to get loads of stuff done today. She spent all day playing in my bed. I finally managed to get clothes on her and went over to my mom's for dinner but that was all we did today.
We managed to wrap 2 gifts and one load of laundry made it into the washer.
Madeleine was not complaining of pain today but she kept asking me to warm her heat wrap. She also spent a lot of time just laying in my bed playing and watching tv.

We did get out yesterday and spent some time with our dear friend Jennifer. She has the same diagnosis as Madeleine and is always full of wisdom and hope when we are at the end of our rope here. Please visit her at www.caringbridge.org/tx/jenn and say hello.
We went over to her new home and enjoyed a nice visit with her parents too. It was exciting to see her big wooden football trophy that she was awarded recently. The Dallas Cowboys gave her an award for all the wonderful community service that she does. They also made a large donation to the MDA in Jennifer's name! We have all our fingers crossed because she is now in the running for a bigger award that would mean her being at the Super Bowl to accept it. Go Jenn!!
From Jennifer's house we went to Garland to visit our friend (and favorite fireman) Bill. He invited us over ages ago and we finally worked out getting over there. Bill's house recently got new equipment so we were able to check out the new firetruck. Then -- he tells us that he will take us for a RIDE in it! We all load up - Mom, Jennifer, Laura, Madeleine, me, and Bill's darling son. Madeleine, Jenn and Bill had on headsets to talk to each other. We had a blast! Madeleine was squealing when we would go up and down hill or over a bump in the road. Thank you so much Bill for everything! Madeleine loved every minute of it!
When we were heading back home I phoned Terry, who was at work, to tell him we had ridden in a fire engine. He is soooo jealous. :)

Tomorrow we are going over to the hospital for Madeleine to get an MRI of her pelvis and thighs. Hopefully we will get results soon.

Happy Holidays!
XXXOOO

Saturday, December 18, 2004 8:47 PM CST

I cannot believe it's just 7 days until Christmas. People keep asking me "are you ready for Christmas?" No!! I am not! Usually I would be and then some but this year it has been a little more of a challenge. This evening Madeleine and I wrapped 4 gifts. She thought that was huge and we deserved a break after that. OK, what she meant by that was she was tired and now I had to lay with her and read. See why it's taking me forever? :)

Yesterday she woke up tired and begged me not to make her get dressed. I kept her home and then we went up to school in time for the class Christmas party. She did not want to miss it but did not have the energy to be there all morning. The class parents had done a wonderful job and it was a super party. Great food, fun activities and the best kids around!
I had phoned over to the clinic to let them know what had been going on with Madeleine. They wanted me to bring her in for labs and to test her muscle strength. The timing all worked out great and we were able to go by to see Aunt Dana, Sam and Ethan! I wish we could have seen Dennis too - maybe next time!

Madeleine is completely enchanted with both boys. She thinks they are just "so darling" and has talked constantly about them since we left there. We had lunch together and it was adorable listening to their conversations. Madeleine rode with Dana and Sam on the way back and evidently they had a funny conversation about hospitals, doctors and nurses. Ethan rode with me and we discussed gameboy things. :) Back at the Eisenbergs' the boys showed Madeleine their fort/playset. It is awesome! This was Sam's wish that was granted by The Make A Wish Foundation. I have mentioned Sam before - he had AML and his twin brother Ethan was his bone marrow donor. Please keep them in your thoughts - they are waiting on some engraftment test results to come back. Ethan is a little hero in so many ways. Sam has the most gorgeous deep dark eyes - you get lost gazing into them. I looked over at him during lunch and completely understood how Dana would write about how he is so wise beyond his years. Check in on Sam and his family at www.caringbridge.org/tx/sameisenberg - his family along with their good friends Jenny & Andrew Scott have raised a fortune for leukemia research. Most of you know that we lost my brother to leukemia. It is heartbreaking to see another child suffer this evil disease. The Eisenbergs and Scotts are going to fund the cure for leukemia one day soon.
Anyway, I wandered from the kids - we were surprised when Madeleine went up the rope ladder! She has been very weak and her strength comes and goes fairly quickly. It felt so good to see her play like a "normal" kid for a few minutes. She loved it and I had to drag her to the truck. Sam pulled her into the sweetest little hug that I almost missed with my camera! We left with promises to play again soon. The boys were calling "I love you!" from the door as we left.

Her labs showed her enzymes are still ok - but I have been told countless times that the labs can be the last place for the trouble to show up. The Dr ordered an MRI and we scheduled it for Tuesday. About the only way to see if the disease is active and doing something is by MRI. Cinda came down with us to get it scheduled and we are going to do it again without sedation. It will make everything easier and she will be so much happier if we can get it done that way. If her MRI does not show muscle inflammation then I was told this may be the way things will be for Madeleine for a while. She will have days with little or no energy and we will have to do the best we can with pain. After playing yesterday she had quite a bit of pain. In fact she walked very little when we were at TSRH and I had to carry her all over the place. She told me she was tired and when we were waiting in the exam room she cried from the pain and being tired. Jolene came in and said to let her out of the room and she would come find us when she had lab results. I carried her around to look at the Christmas decorations and to get popcorn. When she gets tired it makes her frustrated that she cannot do things she wants to do. I can only imagine how angry it would make me if I were 5 years old and did not even feel like walking. It sucks that she cannot play on a swing set with friends for 30 minutes without having awful pain later.
I hope and pray that one day those little muscles can heal and be strong for her to do all the things she wants. She is still scheduled for solumedrol and IVIg on Jan 3rd.

We have a copy of the TSRH 2005 calendar! Madeleine is not just in it once...or twice -- but THREE times!! I should make you play Where's Madeleine and find her yourself...but, if you get a copy you can find her on the COVER! She is slam dunking in the top right corner. It was during Summer All Stars. She is also at the bottom of May and then again inside the back cover. That is Madeleine giving Santa a big hug with her IV wrapped in pink and purple coband. :)

I am going to leave up her story from The Melrose Hotel a little longer. It was such an incredible experience for our girl and I want everyone to have a chance to read about it.

Have a wonderful weekend.
All our love,
XXXOOO

Monday, December 13, 2004 9:44 PM CST

Move over Eloise! Who needs the Plaza when you have The Melrose Hotel?

OK guys, get something to drink and settle in because I might take awhile tonight. :)

First, let's catch up from Friday.
It was Christmas performance day for Madeleine's class. They looked adorable! The kids were all dressed festive in reds with bandannas and they sang their little hearts out. Terry had to work and Granny was out of town so I was on my own balancing the video camera in one hand and taking still shots with the other. Let's just say that I will have to wait and see our classmates photos because my still shots are sort of fuzzy. After sharing a snack back in the classroom we went home and she rested until Josh and William were back from school. Then we went up to Ceramic Antics to paint until dinner. At dinner with our dear friends the Mozleys, Madeleine announced that she had something very important to tell us all. We all had to be quiet for her and she told us "..today at school before the show I met Mrs. Klimek's MOM!" It was so cute because this was so huge - she had met her teacher's mother!! We all ooohed and aaahhed and she was pleased.

Saturday and Sunday were baking days at Granny's. That meant Madeleine could stay in her nightgown and "warm pants" all day and rest as she needed to. We made two kinds of brownies and loads of cookies. The sugar cookies are rolled in bright pink sugar crystals! Is that a typical Madeleine thing to do or what?

She has not been sleeping well at night and wakes up very early and cranky. We are doing everything we can to help her be comfortable but she is still struggling at times...like at 5 am! All we can really do at this point is count the days until Jan 3rd and her next treatment. I keep hoping that she will wake up tomorrow feeling great.

So, now let's get to the good part! This morning we dropped off cookies to friends at TSRH and then hung out in Child Life with The Dallas Cowboys and The Dallas Cowboys Cheerleaders. The 'boys were there and all smiles handing out photos and Christmas stockings (football socks!) to all the kids. Madeleine was amazed at how big the guys were! But, I have to admit she and I enjoyed the Cheerleaders more...sorry guys! Several of the charming ladies signed photos and talked to her. One in particular sat down and chatted for a few minutes. She told Madeleine about how she was a patient at TSRH when she was a baby! Madeleine was totally wow'ed by her story - and so was I! We ran into her later in a different area of the hospital and she stopped again to talk to Madeleine before she left. It was a very exciting morning for our little princess.
We left the hospital and let Madeleine rest up and we had a nice lunch. Then after some more rest for Madeleine it was time for her date at The Melrose. I realized then that it was funny that Madeleine had wanted to watch her Eloise at The Plaza DVD on the way to TSRH this morning. Hoo boy - this kid never fails to amaze us.
The Melrose Hotel is just a could of blocks down Oak Lawn from TSRH and the staff from the hotel are well known around TSRH. They are an awesome group and we met them just after Thanksgiving when they came over to decorate gingerbread houses. Madeleine's friend, Natalie from Community Relations at TSRH came along to watch the cooking fun with us.
The hotel lobby is decorated with a fabulous Christmas tree and we took a few minutes to sit and let Madeleine take it all in. She explored the lobby and decided that it was a "pretty cool place". Lara Gentry came out and Madeleine saw her right away. She said Chef was ready for us and took us straight to the kitchen. It was just through a special door and there we were! Granny, Terry and I were so impressed by all the activity in this grand kitchen. Chef Carlos Makara had a table set up with ingredients and all the tools they would need. Before the cooking started they brought in a gift for Madeleine - her very own coat just like Chef Carlos! It even has a hotel name badge engraved with her name! We were all just about to lose it at that point - pass the tissues! She looked so cute as Lara buttoned her into her special outfit and Chef even produced a hat for her to wear. It was a wee bit big but she has been having the best time letting it fall down over her eyes.
Madeleine brought gifts for Lara, Chef Carlos, and Mr. Chris Alto. She painted small plates for them and they are all different. When she did them she had in mind who was getting which plate so I had to be sure when I wrapped them to get the correct name on the correct plate. She signed the back of the plates and put a tiny black poodle below her name. Thanks to our new friends we were able to get them fired in time to present them this afternoon.
I cannot begin to tell how much fun she had in the kitchen at The Melrose. They had a step stool that she was able to stand and sit on as she needed to. We all watched as she and Chef Carlos did their magic. They were whisking and mixing and then next thing we knew they were putting dough into the molds with their hands. :) There were chocolate chip Madeleines and lemon Madeleines and both are yummy!
We left there with such a nice feeling. These wonderful people took time from their very busy schedules to spend some time with our Madeleine and they made it so special! Our family thanks the staff of The Melrose Hotel for everything. If you run into a little black poodle in your hallways or notice a flash of pink - better look for Madeleine because I have a feeling she will be asking to come back real soon. Thank you all - Chef Carlos, Lara Gentry, and Mr. Chris Alto. Thank you for making Madeleine feel so special today. She loved every minute of it and she loves The Melrose!

Before I say goodnight, we saw sweet Brianna in the clinic this morning. She had been doing great but now she is limping - the Dr told them she has a muscle contracture. I am pretty sure that I felt a crack in my heart when Kim told us. There is come concern about one of her eyes and they are going to check it out too. It is so hard to understand why she has a muscle contracture - her enzymes have been very good and she has been so much stronger. In fact just a couple of weeks ago we were celebrating how she was getting so much stronger. They are going to talk more about this contracture and see what can be done to reverse it. Please keep Brianna in your thoughts if you can. I added a couple of photos of Madeleine and Brianna from 11/29 when they were both getting checked in for treatment. They are so cute together.

Wow, I think I did pretty good! We had such an exciting day that I was worried I would go on for hours. ;) We all hope everyone is enjoying the holiday season.

All our love and as Madeleine likes to say "sleep tight and don't let the bed bugs bite ewwwwwwww!"
XXXOOO

Thursday, December 16, 2004 9:03 PM CST

It has been a long day around here. Madeleine was up at 2:00 am and then again around 5:00 am. She was having a hard time getting comfortable and was so miserable that she could not even tell me where or what hurt most. The first time she woke up Terry put her between us in our bed for the rest of the night. It is hard for any of us to sleep that way but we feel better to have her close when she is in pain.

She stayed in her nightgown all day and we have been rolling with the mood swings. Normally she would have a few good hours early in the day - not today. At one point she was sitting at the bottom of the stairway sobbing. I ran to her and asked what was wrong and she reached for me crying that she just could not climb the stairs. It hurt too bad to lift her legs and go up. After that I phoned the clinic and left a message but no one called back until after 4 pm. I phoned just before lunch - oh well, I know they are busy and have loads of patients. They phoned to let me know that the Dr had been called over to Children's so they could not talk to her about Madeleine today. I am supposed to get a call in the morning. I'm not sure what they can just besides check her labs. Sorry to be such a downer - I guess it's just been a rough day. Tonight we were laying on the bed together and she was content to just lay on her side and play with some little dolls. I am very concerned about how weak she is getting.

Tomorrow is the class Christmas party at Madeleine's school. She is excited about it so I did not get much grief at bedtime. Sometimes when we let her sleep with us it is hard to get her back into her bed - thankfully it was not an issue tonight. I want her to be able to rest and feel good for the party.

I think that is about all the Madeleine news today. Little Willie went to his Dr yesterday and she said he had very strong muscles for a poodle. :) I guess all that swimming over the summer made him grow super strong! I hope some of that muscle strength rubs off on his mistress.

Tomorrow is going to be a better day for our Madeleine. Thanks for checking in on her. I am going to leave the post about Madeleine's afternoon at The Melrose Hotel below for anyone that has not had a chance to read about it.

G'night everyone! XXXOOO

Monday, December 13, 2004 9:44 PM CST

Move over Eloise! Who needs the Plaza when you have The Melrose Hotel?

OK guys, get something to drink and settle in because I might take awhile tonight. :)

First, let's catch up from Friday.
It was Christmas performance day for Madeleine's class. They looked adorable! The kids were all dressed festive in reds with bandannas and they sang their little hearts out. Terry had to work and Granny was out of town so I was on my own balancing the video camera in one hand and taking still shots with the other. Let's just say that I will have to wait and see our classmates photos because my still shots are sort of fuzzy. After sharing a snack back in the classroom we went home and she rested until Josh and William were back from school. Then we went up to Ceramic Antics to paint until dinner. At dinner with our dear friends the Mozleys, Madeleine announced that she had something very important to tell us all. We all had to be quiet for her and she told us "..today at school before the show I met Mrs. Klimek's MOM!" It was so cute because this was so huge - she had met her teacher's mother!! We all ooohed and aaahhed and she was pleased.

Saturday and Sunday were baking days at Granny's. That meant Madeleine could stay in her nightgown and "warm pants" all day and rest as she needed to. We made two kinds of brownies and loads of cookies. The sugar cookies are rolled in bright pink sugar crystals! Is that a typical Madeleine thing to do or what?

She has not been sleeping well at night and wakes up very early and cranky. We are doing everything we can to help her be comfortable but she is still struggling at times...like at 5 am! All we can really do at this point is count the days until Jan 3rd and her next treatment. I keep hoping that she will wake up tomorrow feeling great.

So, now let's get to the good part! This morning we dropped off cookies to friends at TSRH and then hung out in Child Life with The Dallas Cowboys and The Dallas Cowboys Cheerleaders. The 'boys were there and all smiles handing out photos and Christmas stockings (football socks!) to all the kids. Madeleine was amazed at how big the guys were! But, I have to admit she and I enjoyed the Cheerleaders more...sorry guys! Several of the charming ladies signed photos and talked to her. One in particular sat down and chatted for a few minutes. She told Madeleine about how she was a patient at TSRH when she was a baby! Madeleine was totally wow'ed by her story - and so was I! We ran into her later in a different area of the hospital and she stopped again to talk to Madeleine before she left. It was a very exciting morning for our little princess.
We left the hospital and let Madeleine rest up and we had a nice lunch. Then after some more rest for Madeleine it was time for her date at The Melrose. I realized then that it was funny that Madeleine had wanted to watch her Eloise at The Plaza DVD on the way to TSRH this morning. Hoo boy - this kid never fails to amaze us.
The Melrose Hotel is just a could of blocks down Oak Lawn from TSRH and the staff from the hotel are well known around TSRH. They are an awesome group and we met them just after Thanksgiving when they came over to decorate gingerbread houses. Madeleine's friend, Natalie from Community Relations at TSRH came along to watch the cooking fun with us.
The hotel lobby is decorated with a fabulous Christmas tree and we took a few minutes to sit and let Madeleine take it all in. She explored the lobby and decided that it was a "pretty cool place". Lara Gentry came out and Madeleine saw her right away. She said Chef was ready for us and took us straight to the kitchen. It was just through a special door and there we were! Granny, Terry and I were so impressed by all the activity in this grand kitchen. Chef Carlos Makara had a table set up with ingredients and all the tools they would need. Before the cooking started they brought in a gift for Madeleine - her very own coat just like Chef Carlos! It even has a hotel name badge engraved with her name! We were all just about to lose it at that point - pass the tissues! She looked so cute as Lara buttoned her into her special outfit and Chef even produced a hat for her to wear. It was a wee bit big but she has been having the best time letting it fall down over her eyes.
Madeleine brought gifts for Lara, Chef Carlos, and Mr. Chris Alto. She painted small plates for them and they are all different. When she did them she had in mind who was getting which plate so I had to be sure when I wrapped them to get the correct name on the correct plate. She signed the back of the plates and put a tiny black poodle below her name. Thanks to our new friends we were able to get them fired in time to present them this afternoon.
I cannot begin to tell how much fun she had in the kitchen at The Melrose. They had a step stool that she was able to stand and sit on as she needed to. We all watched as she and Chef Carlos did their magic. They were whisking and mixing and then next thing we knew they were putting dough into the molds with their hands. :) There were chocolate chip Madeleines and lemon Madeleines and both are yummy!
We left there with such a nice feeling. These wonderful people took time from their very busy schedules to spend some time with our Madeleine and they made it so special! Our family thanks the staff of The Melrose Hotel for everything. If you run into a little black poodle in your hallways or notice a flash of pink - better look for Madeleine because I have a feeling she will be asking to come back real soon. Thank you all - Chef Carlos, Lara Gentry, and Mr. Chris Alto. Thank you for making Madeleine feel so special today. She loved every minute of it and she loves The Melrose!

Before I say goodnight, we saw sweet Brianna in the clinic this morning. She had been doing great but now she is limping - the Dr told them she has a muscle contracture. I am pretty sure that I felt a crack in my heart when Kim told us. There is come concern about one of her eyes and they are going to check it out too. It is so hard to understand why she has a muscle contracture - her enzymes have been very good and she has been so much stronger. In fact just a couple of weeks ago we were celebrating how she was getting so much stronger. They are going to talk more about this contracture and see what can be done to reverse it. Please keep Brianna in your thoughts if you can. I added a couple of photos of Madeleine and Brianna from 11/29 when they were both getting checked in for treatment. They are so cute together.

Wow, I think I did pretty good! We had such an exciting day that I was worried I would go on for hours. ;) We all hope everyone is enjoying the holiday season.

All our love and as Madeleine likes to say "sleep tight and don't let the bed bugs bite ewwwwwwww!"
XXXOOO

Monday, December 13, 2004 9:44 PM CST

Move over Eloise! Who needs the Plaza when you have The Melrose Hotel?

OK guys, get something to drink and settle in because I might take awhile tonight. :)

First, let's catch up from Friday.
It was Christmas performance day for Madeleine's class. They looked adorable! The kids were all dressed festive in reds with bandannas and they sang their little hearts out. Terry had to work and Granny was out of town so I was on my own balancing the video camera in one hand and taking still shots with the other. Let's just say that I will have to wait and see our classmates photos because my still shots are sort of fuzzy. After sharing a snack back in the classroom we went home and she rested until Josh and William were back from school. Then we went up to Ceramic Antics to paint until dinner. At dinner with our dear friends the Mozleys, Madeleine announced that she had something very important to tell us all. We all had to be quiet for her and she told us "..today at school before the show I met Mrs. Klimek's MOM!" It was so cute because this was so huge - she had met her teacher's mother!! We all ooohed and aaahhed and she was pleased.

Saturday and Sunday were baking days at Granny's. That meant Madeleine could stay in her nightgown and "warm pants" all day and rest as she needed to. We made two kinds of brownies and loads of cookies. The sugar cookies are rolled in bright pink sugar crystals! Is that a typical Madeleine thing to do or what?

She has not been sleeping well at night and wakes up very early and cranky. We are doing everything we can to help her be comfortable but she is still struggling at times...like at 5 am! All we can really do at this point is count the days until Jan 3rd and her next treatment. I keep hoping that she will wake up tomorrow feeling great.

So, now let's get to the good part! This morning we dropped off cookies to friends at TSRH and then hung out in Child Life with The Dallas Cowboys and The Dallas Cowboys Cheerleaders. The 'boys were there and all smiles handing out photos and Christmas stockings (football socks!) to all the kids. Madeleine was amazed at how big the guys were! But, I have to admit she and I enjoyed the Cheerleaders more...sorry guys! Several of the charming ladies signed photos and talked to her. One in particular sat down and chatted for a few minutes. She told Madeleine about how she was a patient at TSRH when she was a baby! Madeleine was totally wow'ed by her story - and so was I! We ran into her later in a different area of the hospital and she stopped again to talk to Madeleine before she left. It was a very exciting morning for our little princess.
We left the hospital and let Madeleine rest up and we had a nice lunch. Then after some more rest for Madeleine it was time for her date at The Melrose. I realized then that it was funny that Madeleine had wanted to watch her Eloise at The Plaza DVD on the way to TSRH this morning. Hoo boy - this kid never fails to amaze us.
The Melrose Hotel is just a could of blocks down Oak Lawn from TSRH and the staff from the hotel are well known around TSRH. They are an awesome group and we met them just after Thanksgiving when they came over to decorate gingerbread houses. Madeleine's friend, Natalie from Community Relations at TSRH came along to watch the cooking fun with us.
The hotel lobby is decorated with a fabulous Christmas tree and we took a few minutes to sit and let Madeleine take it all in. She explored the lobby and decided that it was a "pretty cool place". Lara Gentry came out and Madeleine saw her right away. She said Chef was ready for us and took us straight to the kitchen. It was just through a special door and there we were! Granny, Terry and I were so impressed by all the activity in this grand kitchen. Chef Carlos Makara had a table set up with ingredients and all the tools they would need. Before the cooking started they brought in a gift for Madeleine - her very own coat just like Chef Carlos! It even has a hotel name badge engraved with her name! We were all just about to lose it at that point - pass the tissues! She looked so cute as Lara buttoned her into her special outfit and Chef even produced a hat for her to wear. It was a wee bit big but she has been having the best time letting it fall down over her eyes.
Madeleine brought gifts for Lara, Chef Carlos, and Mr. Chris Alto. She painted small plates for them and they are all different. When she did them she had in mind who was getting which plate so I had to be sure when I wrapped them to get the correct name on the correct plate. She signed the back of the plates and put a tiny black poodle below her name. Thanks to our new friends we were able to get them fired in time to present them this afternoon.
I cannot begin to tell how much fun she had in the kitchen at The Melrose. They had a step stool that she was able to stand and sit on as she needed to. We all watched as she and Chef Carlos did their magic. They were whisking and mixing and then next thing we knew they were putting dough into the molds with their hands. :) There were chocolate chip Madeleines and lemon Madeleines and both are yummy!
We left there with such a nice feeling. These wonderful people took time from their very busy schedules to spend some time with our Madeleine and they made it so special! Our family thanks the staff of The Melrose Hotel for everything. If you run into a little black poodle in your hallways or notice a flash of pink - better look for Madeleine because I have a feeling she will be asking to come back real soon. Thank you all - Chef Carlos, Lara Gentry, and Mr. Chris Alto. Thank you for making Madeleine feel so special today. She loved every minute of it and she loves The Melrose!

Before I say goodnight, we saw sweet Brianna in the clinic this morning. She had been doing great but now she is limping - the Dr told them she has a muscle contracture. I am pretty sure that I felt a crack in my heart when Kim told us. There is come concern about one of her eyes and they are going to check it out too. It is so hard to understand why she has a muscle contracture - her enzymes have been very good and she has been so much stronger. In fact just a couple of weeks ago we were celebrating how she was getting so much stronger. They are going to talk more about this contracture and see what can be done to reverse it. Please keep Brianna in your thoughts if you can. I added a couple of photos of Madeleine and Brianna from 11/29 when they were both getting checked in for treatment. They are so cute together.

Wow, I think I did pretty good! We had such an exciting day that I was worried I would go on for hours. ;) We all hope everyone is enjoying the holiday season.

All our love and as Madeleine likes to say "sleep tight and don't let the bed bugs bite ewwwwwwww!"
XXXOOO

Wednesday, December 8, 2004 9:43 PM CST

Madeleine finally made it to school this morning. Yay! She was so excited to get there and see Mrs. Klimek. We were worried since she had been tiring easily and has not really bounced back after treatment last week. When I picked her up at noon Mrs. K said that she did not have much energy and had to take breaks when writing. Her little hands are not very strong but I feel like they are getting weaker. I have her a ball to squeeze but then do I encourage her to push and exercise if they already hurt? I hate for her to have more or worse pain. Those are all questions I am going to talk to her PT about. Tonight her legs were hurting and she wanted me to rub them with her calming lotion. It is discouraging to have a really great day and then several bad ones.

Yesterday we went down to TSRH to see Terry and his co-workers present a check to the Child Life Dept there. WTG Home Depot Mansfield, TX! Madeleine put on her little orange apron and got into the photo with Dad and friends from the store. I took her wagon and pulled her around to visit the gang there. She enjoyed showing the Home Depot group around the hospital. In the clinic area we ran into Natalie and Rick. They were with a group of "Royal" guests from Medieval Times. They were soooo adorable! The King squatted down to chat with Madeleine and he kept calling her "Princess Madeleine". She was in love. A handsome man dressed as a King and calling her Princess Madeleine - what else could a girl want?? :) Someone produced a little wooden shield and he autographed it and then ordered his Knights to sign it for "Princess Madeleine". I think we got a good shot of her in the middle of the three hunky Knights. It was so cute! Where the heck was her tiara when she needed it?

After our quick tour we headed back home to rest up. I convinced her to go out to lunch and then check out a new store that opened near our house called Ceramic Antics. We ran into a dear friend at lunch - we always see him when we go there it seems! Hey Greg, if you are reading! It was super to see you and catch up! :) After lunch Madeleine and I fell in love with Ceramic Antics. They have some fabulous pieces that you paint and then they glaze and fire. I loved the big serving platters and bowls. We did a gift for someone, I cannot tell you who or what 'cause it would spoil the surprise. I think it's safe to say that we will be hanging out there with our new friend Sara!
Heather, Amy & Julie - you guys have to come see this stuff! You would go nuts!

I will upload the photos from Tuesday as quick as I can. OK - stop laughing...I really will!
Keep in mind that our world works in Madeleine time...but that is how we like it.

Thanks for checking in and Happy Holidays!
xxxooo

Monday, December 6, 2004 8:32 PM CST

Please click on the photo album and see the new photos! I have more so I will change them out in a few days.

The party yesterday was super! Madeleine had the best birthday ever and she had so much fun being with all the family and friends that came out. It was at a place where kids paint ceramics and I think everyone had fun painting. Several grown ups got in on the fun and there was loads of creativity flowing! Madeleine could not stay with her project since she was too busy visiting. It had been over a week since she had seen her school pals and it was great to see their little faces. We had a big pink princess cake that had a tiara on top and at the end of the party there was one piece left. Mom, Heather and I finished that off!
Madeleine received so many fun gifts and I am so grateful to everyone that took time out to come be with us. It was a very special day and it was good to see her smiling nonstop.
Unfortunately when she plays that hard there are downsides. That came last night with the pain and muscle spasms. She was not able to go to school and laid around almost all day today. I let her stay in and regroup so that Wednesday she can get right back to school. I know they are working on all sorts of fun Christmas activities and we don't want her to miss all of that.

I want to tell you about the fun Madeleine had last Wednesday while she was still in the hospital. It was her last day of pulsing and that can be a very long day normally...but, not this time! The staff from The Melrose Hotel came over and decorated gingerbread houses with the patients in the Child Life playroom. It was so much fun and a wonderful distraction from Madeleine being stuck off her feet and hooked up to her pump and getting her b/p every 15 minutes. Time flew! The Chef had constructed the houses in his kitchen and they brought them over ready for decorating. They had all sorts of candy and icing for the kids to work with. If Terry or I offered up a suggestion or tried to assist Madeleine waved us off! She wanted to do it all by herself! In fact I believe Lara from The Melrose was pretty much her assistant during the decorating. :) She discussed baking cookies and such with the Chef and our girl had so much fun. There was a tv camera there and sure enough I saw Madeleine on the news that night. It was brief but that is still so much fun to see her on tv!

The boys had a good weekend playing with the new Nintendo DS that Greg gave them. It is an early Christmas gift and it sure was a hit around our house. Madeleine caught the news of one arriving in the house and she went right into Andrew's room and wanted to "try it out". I have heard this one before and it was time to put on the Kevlar and get prepared for war. Her trying it out turned into her completely taking possession of it. Since it was Andrew's new gift I could not let it continue so a very nice guy at our Target found one at their Burleson store. Thankfully that is only about 12 miles from us and she now has her very own Nintendo DS. Thank you Target and thanks Granny! I had been told they are very hard to find since they are selling out the minute they hit the stores. They are cool and it's easier for her to hold that the Gameboy SP.

I hear the tiny girl calling me from her room. When she feels bad she has trouble getting to sleep. If she feels good we don't hear a peep from her usually. I am off to get her a drink or to help change out a game on her gamegirl.

Thank you for checking in on our Madeleine.
G'night everyone!
xxxooo

Thursday, December 2, 2004 9:28 PM CST

Happy Birthday Madeleine!

Thanks to everyone leaving messages in her guestbook. They mean so much to Madeleine and really cheer her up when she is not feeling well.

Today she asked me if she was old. I assured her that 5 was not old and for her not to worry about that. She told me OK but mom, I feel old!

The birthday girl was up bright and early this morning - by that I mean before I was ready for her to be up! She was weak all day but really had a nice birthday. I let her open her gifts at 7am when she got up and she sat in my bed and played while I slept just a bit longer. We celebrated quietly with dinner tonight at Nagoya in Arlington. She had hibachi New York steak and fried rice - and ate all her steak and part of mine! That was awesome! Our dear friends the Mozleys joined us and it was a nice quiet way to celebrate since she is still not feeling very good.
She did get a fun surprise in that a friend from last years dance class was sitting at the next table over.
We had to get her home right after the Hello Kitty pink cake. She was begging to change clothes and crawl into bed. The real party will be Sunday afternoon and I have my fingers crossed that she will feel much stronger by then. She is acting like she has another bladder infection though so I am going to phone the Dr in the morning and see about that. If it's not one thing it's another and she has gotten one every time she is pulsed the last several times.

I want to tell you a little more about last Tuesday evening - it was so special for our family.
When we had checked in on Monday Madeleine was asked to participate in the tree lighting event - she was very excited from that moment on. We sent Granny out to shop for the perfect "tree lighting ceremony" dress and she found it! Madeleine wore an emerald green corduroy jumper that had little Santa faces embroidered on the front. The little shirt is white and it had to be soft or there was no way she would have let us put it on her. She is always hypersensitive but more so when she is getting solumedrol. The outfit had a matching purse that was in the same fabric as the jumper with a little Santa face. She even found these adorable white tights that had big red and green polka dots. We finished her off with a sparkly red and green hair bow and little black velvet shoes. She looked so precious and I will get some photos uploaded soon.
We were worried that she would have to be in her wheelchair and hooked up since her medicine had gotten a late start but it all fell into place nicely. There was a gentleman speaking about the upcoming marathon and thankfully her infusion finished before he did! :)
Cinda was right up there with us in the front and she helped me get her undone from the gear and she popped right up ready to go. She would sit down and rest a minute when she could but in all she did super. This is a very big deal for the hospital annually. There are about 50 groups of people that attend and each group decorates a tree. They plan out what they are going to do and gather their stuff ahead of time. When the ceremony in the atrium was finished with a big count down and the girls pressing the big button to light tree, they sent out the groups to decorate their tree. There are trees all over the place and no two are alike. It was fun just strolling around and looking at how creative some of there are! The one in the cafeteria was done by our friends at The Melrose Hotel and it looks so elegant! Another group did the one by the nurses station in Care Bears. We loved the tree in the Child Life playroom, it is done in a Candyland theme complete with a train. These groups are from all over - some are organizations, schools, and businesses. I contacted the head of the dept that handles this and we hope to have a Family and Friends of Madeleine Radzwion tree one year soon! There is quite a waiting list to be able to have a tree, I believe that she said there would be 15 groups ahead of us. That means 16 groups have to drop out before we can get in on the fun - but we will wait. :) Madeleine had fun thinking about how she would decorate one....imagine all pink (duh) with fluffy stuffed poodles all over. One year we could even go with a "Madeleine" theme - there are so many possibilities!
As I mentioned last night, Madeleine and Brianna were invited to help the Alumni decorate their tree. They made their tree skirt out of pennants from all the universities they have attended with scholarships from TSRH. It is so clever and fun! In the atrium the kitchen staff had made giant gingerbread cookies and they had all sorts of refreshments.
Santa had come in during the ceremony when a group was singing "Here Comes Santa Claus" and he strolled around the entire building stopping by all the trees to visit. We caught up with him because Madeleine wanted to make it an early night and get into her bed. He was the most beautiful (boys can be beautiful too!) Santa I have ever seen - he was amazing and Madeleine loved him instantly. He talked to her about lighting the tree and about what she wanted for Christmas. She could not think of a thing but was very sweet - then she threw her little arms around him for a hug.
We said our goodnights and headed upstairs to get Madeleine comfortable. The party downstairs was just getting warmed up though! They had an orchestra there that was playing and they served dinner to all the people that attended. When mom left she ran to get me something to eat outside the hospital. She phoned when she pulled up at the main entrance and Madeleine and I ran down and grabbed it. Since that was on the 1st floor we could see down into the atrium from the bridge - it was so beautiful with the decorations and the music - we felt like naughty children sneaking out of bed to peek at the party. We giggled and rushed back up to our room. No one caught us in our pajamas roaming the halls.
When we got back I ate a quick dinner and she was asleep before her DVD got started. I crawled into bed with her and played my gameboy - I mean gamegirl - in the dark to unwind.

Tomorrow I will write about decorating gingerbread houses with the wonderful staff from The Melrose Hotel.

Happy Holidays! XXXOOO

Wednesday, December 1, 2004 9:24 PM CST

Birthday Eve !

We arrived back home tonight around 7:30pm after a very long day.
She was asleep not too long after the lights of downtown Dallas were in my rearview
mirrors. I have so much to tell but I am wiped out and just want to crawl into bed. Sorry!

I will give you a quick report and then get into more details later.
OK - our clinic appt on Monday was ok, she got weaker and lost some muscle strength. The PT tested her and she had slipped back a bit - that was a bit disappointment but I was not too surprised. She spent so much time laying around the last couple of weeks and had so little stamina. There are times you would not know she is sick by the way she acts but those are short in duration. They are working out the paperwork for her to begin IVIg probably when we go in next for her solumedrol pulsing. We are working on that and we should have all the details soon.
After we were settled in on Monday we were contacted from folks planning the tree lighting ceremony at TSRH that took place Tues evening. They asked Madeleine and Brianna to do the lighting and they were both so excited. The event is a big deal annually and the atrium was packed with people. Granny ran out Monday night and found Madeleine a darling dress to wear - photos will be coming soon! Brianna's mom made a run to the store also and both girls were decked out and looked beautiful. It was so emotional and something we will all never forget. Our friend Jennifer was there to decorate the TSRH Alumni tree and her group invited Madeleine and Brianna to decorate with them. These are the former patients that were awarded college scholarships by TSRH. They were all so sweet and their tree is decked out with the colors and logos of all the universities they attended. Thanks to all the great people that invited us to be a part of such a magical evening. Give me a day to regroup because there is so much I am leaving out. Thanks Heather and Amy for coming up - it was great to have you both there to share it all with us.
Later that night after we changed back into pajamas and snuggled in bed Santa stopped by to see Madeleine. He talked about their visit earlier and she burst out with "Thursday is my birthday Santa!" Santa was precious and he gave her hi-5 for an almost 5 year old. She was asleep the minute she snuggled into her blankets with Baby Elvis.

The partying did not end with Tuesdays fun though! Today some staff from The Melrose Hotel came over with gingerbread houses for the kids to decorate. Madeleine was waiting in the Child Life playroom for them to arrive! She had a blast using her one hand to do frosting and stick on candies. Again, photos are coming! I cannot begin to thank the general manager of The Melrose, Christopher Alto and Chef Carlos Makara and all the other lovely employees of your hotel. Mr. Alto and Chef Makara have invited Madeleine to come over and tour the kitchens sometime soon. She was very excited about that! While they were working on the houses she and the Chef talked about making Madeleines and he said they would have to do that soon. OMG!! I just saw Madeleine on TV as I was typing this! I was just about to mention how they had media coverage there of the kids making the gingerbread houses. That was crazy, eh? I heard them mention TSRH and looked up just in time to see her there on the screen.

I wanted to make this quick and go rest but there is so much more to report. We have darling photos of Madeleine giving one of the Child Life Specialists, Jennifer, a makeover. Rick from the media dept came up and took photos of them enjoying the products sent from Biotherm. Our nurses were all walking around with the most beautiful lips and big smiles. It was a fun treat for the folks that take such good care of our Madeleine. Plus they have plenty of fun eyeshadows and lipsticks for the teen girls that check in as patients. We had little make up parties going on all over the place! Thanks again Biotherm!

The birthday girl hardly stirred when Terry carried her in the house. She had demanded to sleep in our bed when we were leaving the hospital but thankfully was too groggy to protest when we brought her in. That is a big help since I had to wrap birthday gifts and sort of unpack. Everyone at the hospital made the last 3 days as special as possible for our girl and we will never be able to thank them enough. She has been so excited about turning 5 and I hope she wakes tomorrow feeling a little better. We are going to let her rest as much as possible tomorrow and then go to dinner at one of her favorite places. The real party will be Sunday with all her friends there.

That was the quick version - I will type more details asap!
We have a very excited little poodle that wants my attention.

All our love! XXXOOO

Sunday, November 28, 2004 9:02 PM CST

First off I want to thank the girls at TX Scottish Rite for inviting us to the Chamberlain Ballet to see the Nutcracker on Friday. Madeleine loved it - we all loved it! It was the first time for William and Madeleine to see a "real" ballet and they were very impressed. I think the best part for the girl was after it ended they invited anyone interested to come up front and visit with the dancers. Madeleine was in awe of the beautiful costumes. The dancers were so darling and they were encouraging the kids to feel the fabrics. There was a precious little girl beside Madeleine that was blind and they were placing her hands on the dancers costumes. Madeleine and I both were so touched by how sweet it was.

Madeleine checks in tomorrow morning for treatment at the hospital. I have our bags packed and ready to go and I think there is enough stuff for at least a week. If I try and take less we end up having Terry run things over to us. She is looking forward to getting there and showing everyone all the fun stuff from Biotherm she is bringing them.

The girl had a rough day yesterday and did not feel well at all. It just got worse closer to bed time last night and she was up and down most of the night. She ended up between Terry and I more than once and finally was there to stay. The poor kid could not get comfortable and slept very little. She laid with her head on me and her feet on Terry. It was a long night!

We shelved all our plans for today and stayed close to home. She was tired and cranky and laid around a lot. We were decorating the tree and she kept taking breaks saying that she was too tired to do it. I could tell she did not want to keep stopping and was just exhausted. I tried to color with her but her little hands did not have the strength or stamina to hold the crayons for more than a few minutes. We even tried a few games but she really feels too miserable.

Happy Anniversary Terry - I have not seen much of him since he worked today! Maybe we can share a glass of juice or something when you get home.

I am going to leave my last entry on this page for a little longer. The folks at Biotherm are so caring that I want to give everyone a chance read about their gifts for our caregivers.

Everyone take care! XXXOOO

Thursday, November 25, 2004 8:46 PM CST

Here are a couple of "Madeleine" moments from the last couple of days:

I was on the phone with Cinda discussing some fund raising that I want to see happen for the Child Life Dept. During the conversation Madeleine spoke up and said "...mom, mom, MOM! I can baby-sit for any babies while you are working on this..." It was just so sweet coming from her in that little voice. She wanted us to know that she could work a daycare and take care of any babies so we could do a fund raiser. The idea I was batting around does not need any babysitting but she did not understand that..she just wanted to help out.

This evening she and I were in the floor playing quietly and she wanted to play doctor and nurse with Little Willie. He was laying in my lap and she was the Dr and I was her nurse. It was determined that Willie had "poodle dermatomyositis" and would need a little bit of surgery, an MRI, and an IV. OK. Willie was content laying in my lap and getting his belly rubbed so he could have cared less! She told me to get the patient ready and to his room while she got the sharp things she would need for surgery. yike! When she returned she had a little plastic knife that is from her toy silverware! It was not too hard to get her to give up on that idea when Willie needed his Poodle Life Specialist to come and help him through his procedures. She was all over that and Little Willie received the best care ever given to a little poodle anywhere I am sure.

Madeleine is feeling ok today. When she got up this morning she complained that she was very tired. She was in a pretty good mood for the most part but everything seems to taste bad to her. That started yesterday and no matter what it is she says it's either spoiled or old. Today she tried several things but settled on mashed potatoes.
We made a quick trip to take Thanksgiving dinner to my grandmother at her nursing home. She loved seeing all three kids and Little Willie. Madeleine crawled around on her bed with Willie and we managed to take a few photos.
Later after dinner Madeleine disappeared while we were still at the table. She had crawled into bed and was ready to go to sleep. We tucked her in without complaints and I am sure she was asleep within minutes. :)

Before I say goodnight I want to tell you about something special that UPS delivered yesterday. Through my dear friend Marlene Eskin we have met some very special people. Margaret Sharkey, Roberta Weiss, and Laura Menard Fitzgerald arranged to have loads (and I mean loads!) of wonderful products from Biotherm delivered to me. I will be taking them to Scottish Rite with us on Monday when we check in and girls you are going to hear the squeals all the way up there in NYC! If you are not familiar with Biotherm please take the time to check them out. Not only do they make an excellent line of cosmetics and skin care, they are wonderful people. When we get settled into our room I will bring in the boxes and we will have an early Christmas for the caring staff that has come to be like family to us. There is enough to make sure all our nurses and Child Life Specialists get goodie bags!! After that we will have plenty to go in welcome bags for the older girls that check in as patients! Isn't that awesome? It was so exciting to see all the boxes - you just cannot imagine! I am so thankful for companies like Biotherm for their generosity. There is no one that deserves a treat more than the team of professionals that care for our precious Madeleine. She loves them all so much and they in return her love and affection. Where else do you see a 4 yr old light up when she sees the special nurse that can always hit her vein and get that IV started with the least trauma and on the first stick. She is always excited to see her nurses Trudy, Peggy, Rachel, Emily, Beth, and many others. Madeleine is going to have a ball helping give out the "girl stuff" from Biotherm.
Thank you Laura and Margaret. I wish I could thank you in person for this generous gift to our caregivers. Margaret and Marlene, we were thinking of you both this morning while watching the parade on TV. Madeleine and I were still in pajamas and piled in bed to watch. During the parts where they showed the dance routines Madeleine would get up and try and few moves along with the dancers on TV. I laughed until I cried when she was trying the belly dancing! I wish you could have seen her - it was adorable. Madeleine said it was her parade because Marlene and Margaret dedicated it to HER! She loves the messages from you both - they always make her day and we reread them all the time.

Sorry I got so long winded! I am just so full tonight! Not from the food silly :) - of love and thanks for my family and my family of friends all over the world. You all are so special to us and I want you to know that we are so lucky to have you in our lives.

Happy Thanksgiving!
XXXOOO

Thursday, November 25, 2004 8:46 PM CST

Here are a couple of "Madeleine" moments from the last couple of days:

I was on the phone with Cinda discussing some fund raising that I want to see happen for the Child Life Dept. During the conversation Madeleine spoke up and said "...mom, mom, MOM! I can baby-sit for any babies while you are working on this..." It was just so sweet coming from her in that little voice. She wanted us to know that she could work a daycare and take care of any babies so we could do a fund raiser. The idea I was batting around does not need any babysitting but she did not understand that..she just wanted to help out.

This evening she and I were in the floor playing quietly and she wanted to play doctor and nurse with Little Willie. He was laying in my lap and she was the Dr and I was her nurse. It was determined that Willie had "poodle dermatomyositis" and would need a little bit of surgery, an MRI, and an IV. OK. Willie was content laying in my lap and getting his belly rubbed so he could have cared less! She told me to get the patient ready and to his room while she got the sharp things she would need for surgery. yike! When she returned she had a little plastic knife that is from her toy silverware! It was not too hard to get her to give up on that idea when Willie needed his Poodle Life Specialist to come and help him through his procedures. She was all over that and Little Willie received the best care ever given to a little poodle anywhere I am sure.

Madeleine is feeling ok today. When she got up this morning she complained that she was very tired. She was in a pretty good mood for the most part but everything seems to taste bad to her. That started yesterday and no matter what it is she says it's either spoiled or old. Today she tried several things but settled on mashed potatoes.
We made a quick trip to take Thanksgiving dinner to my grandmother at her nursing home. She loved seeing all three kids and Little Willie. Madeleine crawled around on her bed with Willie and we managed to take a few photos.
Later after dinner Madeleine disappeared while we were still at the table. She had crawled into bed and was ready to go to sleep. We tucked her in without complaints and I am sure she was asleep within minutes. :)

Before I say goodnight I want to tell you about something special that UPS delivered yesterday. Through my dear friend Marlene Eskin we have met some very special people. Margaret Sharkey, Roberta Weiss, and Laura Menard Fitzgerald arranged to have loads (and I mean loads!) of wonderful products from Biotherm delivered to me. I will be taking them to Scottish Rite with us on Monday when we check in and girls you are going to hear the squeals all the way up there in NYC! If you are not familiar with Biotherm please take the time to check them out. Not only do they make an excellent line of cosmetics and skin care, they are wonderful people. When we get settled into our room I will bring in the boxes and we will have an early Christmas for the caring staff that has come to be like family to us. There is enough to make sure all our nurses and Child Life Specialists get goodie bags!! After that we will have plenty to go in welcome bags for the older girls that check in as patients! Isn't that awesome? It was so exciting to see all the boxes - you just cannot imagine! I am so thankful for companies like Biotherm for their generosity. There is no one that deserves a treat more than the team of professionals that care for our precious Madeleine. She loves them all so much and they in return her love and affection. Where else do you see a 4 yr old light up when she sees the special nurse that can always hit her vein and get that IV started with the least trauma and on the first stick. She is always excited to see her nurses Trudy, Peggy, Rachel, Emily, Beth, and many others. Madeleine is going to have a ball helping give out the "girl stuff" from Biotherm.
Thank you Laura and Margaret. I wish I could thank you in person for this generous gift to our caregivers. Margaret and Marlene, we were thinking of you both this morning while watching the parade on TV. Madeleine and I were still in pajamas and piled in bed to watch. During the parts where they showed the dance routines Madeleine would get up and try and few moves along with the dancers on TV. I laughed until I cried when she was trying the belly dancing! I wish you could have seen her - it was adorable. Madeleine said it was her parade because Marlene and Margaret dedicated it to HER! She loves the messages from you both - they always make her day and we reread them all the time.

Sorry I got so long winded! I am just so full tonight! Not from the food silly :) - of love and thanks for my family and my family of friends all over the world. You all are so special to us and I want you to know that we are so lucky to have you in our lives.

Happy Thanksgiving!
XXXOOO

Tuesday, November 23, 2004 11:40 AM CST

The last few days have flown by!
Madeleine had a great time at school yesterday but very tired. Her feet have been sore from her "new" shoes and I was afraid they were not fitting correctly...they weren't. She ditched them the minute we pulled out of the school driveway. When we got home both her big toes were swollen and oozing. I phoned the Dr and made sure I needed to be concerned. We went over the Dr. Sweet's for her to take a look and get her on antibiotics. I shudder at having to go into her office just because of all the sick kids going in and out. We had only been there are little while when Madeleine saw Kelly our awesome PNP standing near the window. She ran over and starting pounding on the glass -- gotta love these demanding kids!
Kelly jumped and smiled at her. :) Then she came out and picked her up and things went very quickly from there. We went to a room and Kelly checked out her feet and wrote up the medicine. We started Keflex and Centany ointment. She soaks her feet in warm water and epsom salts then we rub in the Centany. There are sores on both big toes where her shoes were pressing in too tight. This morning they both look better and are not draining anymore.
Getting started on antibiotics got her a pass on the methotrexate shot that was due tomorrow. I think she is happy about that but I hope it does not cause more of a setback in her condition.
Jo from our clinic at Scottish Rite just phoned me. She said that even though she does not get methotrexate this week we are still on track to get her solumedrol starting Monday. By Monday she would have had the Keflex enough days so we are cool on that.

When Madeleine and I got back home Terry carried her in and put her on down on the bed. We were talking about him going up and picking up her prescription I had dropped off and Madeleine chimed in with "..yeah, they said I have an infection and started I think 4 or 5 antibiotics..." She is so funny. I am not sure if she really thought that she got that many or not because then she was too interested in her soup to talk to us.
Mom and I hit the mall after she was settled with Terry and went on a quest for new shoes. We found a couple of pair at Stride Rite that I could pull out the inside and put her orthotics in that would work. They had to be wide enough for her orthotics - which seems crazy since her little feet are so narrow. Madeleine gave her approval on both pair this morning and is wearing a pair now. They are white leather sneakers with silver laces. On the outside of them they have two little kitten faces wearing sparkly jewel tiaras and necklaces.

It was so strange going to the mall and not having to rush and grab what I needed. We could take our time and browse - it was so odd! I was not having to make promises of hurrying or taking turns carrying Madeleine. Our last stop before we left we were looking at socks in Dillard's and by the checkout there were cans of spray on hose. What is up with that? You spray this stuff on it makes you look like you are wearing hose...like spray paint! Mom was wearing cropped pants so I sprayed some on her - you can imagine how thrilled she was since she was not paying attention to me. I really should get out more often.

I am off to get ready for Little Dolphins. Since it is pouring down today we may need the help of dolphins to get there! Madeleine is excited - she loves being able to spend time with the other little girls and I really enjoy the other moms in the group. Dr. Curtis is the best and I am so glad we have these meetings. Today is also special because William is invited. The kids that have siblings are bringing them along.

Stay dry and have a super day!

Saturday, November 20, 2004 7:58 PM CST

What a great week it has been! Madeleine went to school all 3 days!
I am so proud of my little trooper. She did not really feel up to it on Friday but she got herself on track and made it. I cannot remember the last time we made it all 3 days so I am beyond thrilled.

On Thursday I received a phone call that a photo of Madeleine is in the TSRH 2005 calendar. Wow! Isn't that awesome? I cannot wait to see it and she is really excited. She said she cannot wait to go through it and see who else in there she knows. :) We know that Catherine's sister, Baby Lily, is in there and I bet we will see quite a few little faces of kids we know.

Today we took things slow and made the girl comfortable on her lambskin in my bed. She had a few little bites of several different breakfasts and watched her TV shows. We persuaded her to get into something besides pajamas and go see the new SpongeBob Movie. She loved it and went between a seat and Granny's lap to try and keep comfortable. Her legs are really stiff and sore. When she is still for a little while it's painful to get them going again. We managed to get seats that allowed her to move and even stand if she needed to. Madeleine and William thought it was great and highly recommend everyone see it. I would have liked it more if there had not been so many kids hacking and coughing. I told mom they probably have TB or something along those lines. She did not think I was funny though and whispered that she was sure they have the flu. Of course, she was not happy about that either. Next I will be carrying a can of Lysol in my purse to kill germs.

When we were walking out (carrying Madeleine) she said that she was ready to get back home. What she wanted was to get home and out of her shoes and clothes and get comfortable. She was complaining that her tummy was hurting so I got her to take a little of Aunt Dana's magic tummy medicine AKA gripe water. She hates the taste and it takes major bribes but that stuff really does seem to work. Between that and the Tylenol chaser maybe one will work.
She has less stamina everyday and that follows the same pattern as before. It gets harder and she has more pain but it's only 9 days until her next treatment. The rash on her face is still fairly red in places.

I hope everyone is having a great weekend!
xxxooo!

Wednesday, November 17, 2004 9:26 PM CST

Today was the Fall Feast in Madeleine's class. She has been counting down each and every day - "how many MORE days until the Fall Feast??" I know she has been asking that for the last couple of weeks. When we signed up to bring the rolls she wanted me to go that day and buy them. When she woke up this morning it was like a dream come true for her. :) She got dressed and only grumbled a little when I told her it was time for her methotrexate shot. Willie made sure she was ok during her shot and of course, I did not push the medicine slowwwww enough for her.
Terry and I dropped her off then ran back to shower and grab the rolls and cameras.
The kids were all dressed in Indian costumes and did a couple of adorable songs. I balanced the video camera in one hand and digital camera in the other. Terry and I could not get enough of that little smiling face. She was so happy and told me that she has decided that Thanksgiving is her favorite holiday. I was so proud of my tiny girl.
After the songs they sat down to their feast. Our room parent had coordinated a wonderful spread for everyone. They had all sorts of good finger foods and one mom made the cutest turkey cupcakes. After food they played a game and did a fun craft. All this before noon!
When we loaded up to come home we had a very full and tired Madeleine. Her tummy was content and she was ready to snuggle up on my bed for a little while and rest.

The last couple of days she has really gone full out during the mornings and then spent the afternoon laying around. I think she is doing really well considering how long it's been since her last pulsing of solumedrol. We have 12 more days until her next treatment and she has been feeling worse and her energy declines more around this time. That is pretty much on track with how we have done the last few months I believe.

I have great news on Brianna today. Earlier they were supposed to be discharged and heading home! Yay! They removed her PIC line and she stopped running fevers and got better. The most interesting (and good) news is that while she has been going through all the trouble with infection they had to stop her solumedrol. We were worried that it would mean her dermatomyositis would have a chance to get worse and worse. She was very weak and had a n-g tube when she got the infection in her central line. To try and keep her from getting any worse they still gave her IVIg every other week during that time - well, she got BETTER - not worse! Better than she has been from months of solumedrol pulsing! That means no awful steroid side effects - no more awful mood swings! I am so excited that she is better. Her mom said she was getting in and out of bed on her own and down playing on the floor. All that with NO solumedrol. I love it! They should be checking in for treatment at the same time we do just after Thanksgiving.

I want to send thanks to the person that posted Julia's information on dermatomyositis. I read her story earlier this year when Madeleine was first diagnosed. I was not able to find an update since 11/03 so hopefully she is still in remission and doing well. From what I gathered it took her about 5 years to achieve remission. She did not start off with solumedrol pulsing - they waited until oral steroids were not doing enough. So, our treatments have been a bit different.
Here is the page of one of our dear friends living with dermatomyositis, www.caringbridge.org/tx/jenn . Jennifer is an awesome woman and I always run to her when I have questions or just need to talk about what is going on with Madeleine. In fact I do want everyone to check in with her because she is starting a new business. :) I have seen her jewelry and it is beautiful! See her for help with your holiday gifts!

Our little princess is tucked into her castle bed and probably dreaming of her next Thanksgiving feast. Thank you for taking time to check in our our girl. We have the most wonderful family and friends anyone could ask for.
xxxooo!

Monday, November 15, 2004 8:05 PM CST

Tonight my little miss is not able to get around well at all. She had a great time at school this morning and I am afraid it was too much for her. When I picked her up at noon Mrs. K commented on how much energy she seemed to have and we hoped that did not mean she would suffer for it...well, she is. They are doing all sorts of fun things leading up to the holidays - fun crafts and learning adorable songs to sing for the parents. She has been so excited about their Fall Feast that is Wednesday.
When we got home from school she played for a little while and then slowly worked her way into pajamas and my bed. That is where she stayed from about 1:30 until 6:00pm. Nothing has been making her happy and she has cried a lot. She requested her favorites from Taco Grill for dinner so I left her in Andrew's charge and ran over there and picked it up. Thank goodness it is only about 1.5 miles from the house! I fixed her plate on a tray and let her have dinner in my bed. The rice was touching the beans. Uh oh. She really let loose and cried huge tears for the longest time. Long after I put it all on a new plate with dividers so nothing could touch, she was still crying. It was not really the food at all, she just felt awful. When she was able to eat I asked her if she was ok and she said "no". After a few bites I asked what was going on and she said that she knew she had done too much at school. It was just so sad to see her little face when she was telling me how much she hurt.
After she ate she tried to get up and could not walk well at all. She took a few steps and her legs were almost too stiff to hold her up. I ran a warm bath real quick and got her in the tub. She played in the water almost until bedtime.
After she was moving some we did puzzles together on jigzone.com. That is such a neat site - thanks Marlene for having a link to it on your page. Madeleine must have done half of their puzzles already! She will do them until her little hands are too tired to work the mouse. Then she directs me to work the mouse and put the pieces where she tells me.

I was so sure that things were looking up. She felt so good this morning after having a peaceful night last night. We put her in bed on a big sheep throw. A dear friend had been telling us how they used to put their babies on them when they were little. She thought it would be good for Madeleine since they are so soft and they don't break down your skin. Well, she found one that is just the perfect size for the girl and she loves it. I put it everywhere she goes around the house and she snuggles into it with her pillow, quilt and Baby Elvis.
I hope she is able to rest tonight but I will not be surprised if she is up in the wee hours.

We did make it to the Holiday Bazaar at Scottish Rite on Saturday. It was awesome! There were some amazing items that people had donated for the silent auction. One was an antique player piano and it was gorgeous! I had hoped to donate a quilt but time has not been on my side the last several months. Madeleine requires a great deal of my time and then I want to do things with the boys too. That does not leave much time to sew but I will not give up! :)

Please keep our dear little friend Brianna and her mom in your thoughts and prayers. She finally was released from Childrens with a new PIC line to replace her infected central line just last week. She was admitted again on Saturday with a fever and they had started her IV meds while waiting on the cultures. They have had such a rough time! I hate this disease so much and would give anything to make it go away. Brianna and her mom have been in the hospital at TSRH or Childrens almost continually since she was diagnosed. Madeleine was diagnosed just a few weeks before Brianna was.

Another dear friend had an accident recently and I want to take minute to say that she better be taking care of herself! I really wish we lived closer so we could help you out.

I think I have Andrew convinced that I really don't have to be at the video store at midnight when the 3rd season of Aqua Teen goes on sale. Honey, they will still have a copy for you when I get to a store tomorrow...trust me! I am surprised he did not try and get Heather, Julie and Amy to go sit outside a Blockbuster and wait with him. :)

Lots of love! xxxooo

Thursday, November 11, 2004 9:11 PM CST

The last few days have been filled with mood swings. I think Madeleine realizes what is going on but not right away. During lunch today she looked at me and told me that she was sorry that she was so ugly to me this morning. It was so sweet the way she said it and I could not help but feel bad for her. She had had a very rough morning and nothing made her happy. It's been the kind of days where we cannot cut her food the right way, put her drink in the correct cup, make sure the toast is the proper shade of brown etc. I am fairly sure that if I had asked her opinion I have not been breathing the right way either.
This morning when I was in the shower Madeleine started shouting at me - with the water running and she high pitched little voice (and my bad hearing) there was no chance of me understanding her. That just made her more excited and angry. After I get the water turned off she is telling me to hurry up and "GET IN HERE!" You would have thought that something was really important she was so insistent that I get to her. "You have to get me online NOW! I have a code and I have to get online! DO IT NOW!" If anyone has ever played or been around a child playing Nintendo or anything of that sort, you know what she is talking about. To these kids (and grownups to) these codes are the life blood to your game! You must buy the 15.00 game guides and other goodies that are $$$ to get you the advantage in the games. You go to certain websites and get code information etc. I could have sworn I was listening to William freaking out over a code rather than Madeleine.
I put her online and she typed in leapsterworld.com - at least it was that since it's educational rather than nintendo - ok, and she goes to the codes area and was so mad that the connection was not at the speed she would have liked. She is almost 5! Not 15!
It was too much, watching her type in her code and wait for whatever bonus she expected to get...she waited...and waited. Then a pdf opens and it's a dot to dot of a chicken. All that freaking out and it was for a dot to dot. It made her happy though and she clicks print. When it was done she grabbed a marker and did the dot to dot in a few seconds and then was done. It was time to click on Blue's Clues and she was done with being online and her Leapster. whew

She did have more energy for part of Wednesday and I think that was due to the increased dose of methotrexate. We are still working on the balance of not using that extra energy up by playing harder and being more active and then feeling worse afterwards. That is what she did yesterday. By evening she was very stiff and hobbling around crying. The physical therapist spoke to her about slowing down. Since her joints are so loose we have to encourage her not to go nuts pushing herself as hard as she wants to. It's so strange and I might as well be telling Little Willie not to run around. She ignores me but when I remind her that Deanna told her that and she gives me a funny look. If one of her medical team tells her something she will listen more to them than me. Kids!!

If you are in the D/FW area there is a great Holiday Bazaar at Scottish Rite starting tomorrow. I am sure details are on their website if you want times. They will have loads of yummy stuff and it's for a very good cause.

Everyone stay warm! It's brrrrrr cold here!
xxxxoooo!

Tuesday, November 9, 2004 10:15 AM CST

Hoo boy what a morning it's been...the little miss has been up since 4:04am!
My voice seems to be missing so if anyone happens to find it please drop it in the mail asap - I am in a bad way without it. It was better yesterday but now I am just able to whisper.

We had a wonderful time in Houston and the quilt show was wonderful. It seemed bigger than last years show and we really enjoyed all the vendor booths. On Friday Madeleine scored all sorts of fun stuff! We would be shopping and someone would end up giving her a gift! A very nice lady gave her a gorgeous magnet that she makes at home in Canada - her artwork was beautiful and we bought some Christmas gifts from her. Then another man gave her a kit that has everything to make a little quilted elephant wall hanging. It has all the pieces already cut into shapes and even has the batting. Madeleine lays it out and puts all the pieces into place like a puzzle - she may not let me sew it for a long time because it's too much fun to play with. We found a lady that I bought crystals from at the Arlington show and she gave Madeleine a bag of pink crystals and a tray to sort them in. Can you believe how nice people are?
Also on Friday one of our nurses phoned since one of the girls cultures came back positive. We had a Walgreen's just across from the hotel so she called in the medicine we needed there. Everything seemed to fall into place nicely.

That evening Mom, Terry and William went out shopping while Madeleine and I played at the hotel. We used the pink crystals to decorate her shoes and rested from our busy day.
Saturday Madeleine and Terry played at the hotel while we went back to the show. William, Mom and I met Aunt Pat and Uncle Gerry and we shopped until we dropped. Dad and Charlotte joined us just after lunch and we all had a lot of fun. The grand prize winners were not near as beautiful as last years - but they were nice and I am sure many hours went into each one.

Our trip home was uneventful and we were home in plenty of time to get the little miss rested for school yesterday. She was so glad to get back to her class and from the smile on her face at noon I am certain she loved every minute of it. The girl was so excited because she made the "20 club" in her class and they made angels.

I have to stop every few minutes and watch magic tricks. The Amazing Madeleine and her assistant Little Willingster are performing for me. I guess we will play here at home today and get back on track so she can go to school tomorrow. At about 5:30am she had a melt down over me not getting up and helping her get dressed for dance class. We are going to be LATE!! Since she used all her energy early on we won't be making dance this morning.

Oh no, she is about to do another rope trick and that is never a good thing for me.
Have a wonderful day!
xxxooo

Friday, November 5, 2004 9:41 AM CST

Good Morning from Houston! We were here by about 8pm last night and the little miss was fast asleep when we pulled up at the hotel. Mom came down to carry her up while Terry and I unloaded. When we got to the room she was exploring everything and fully awake. I guess the nap in the truck was enough to recharge her batteries - ugh. I think we had her asleep by 10pm and she was up bright and early wanting to know why we were so slow getting up! What is wrong with YOU?! I am ready to EAT! Her face is not so red this morning and she does seem to have a little more energy. The little bounce is in her step and she is in a very good mood. When she managed to get us all out of bed she grabbed her new shoes out of her bag and sat down to put them on - are you listening Cinda? :)
I don't know what I would do without my (or I should call her Madeleine's) partner Cinda. She suggested we embelish Madeleine's new shoes we got in the orthotics lab on Tuesday and make them special - something different from everyone else. We are decorating them with crystals and they sparkle! I will have to take a photo so you can see. I am so glad Cinda suggested this since everytime I tried to get Madeleine to put them on she gave me a "huh" and her little head would turn away. Thank you Cinda - you (and your lovely coworkers) are truely our partner in this journey with us.

I did not mention yesterday that we were thrilled to see our friend Jennifer on Wed at the hospital. She was volunteering and it is always wonderful to see her smiling face. I am so excited that she asked us to be on her team for the MDA walk in Jan! We recurited Heather, Amy and Julie to join us all too! I know you weren't there to answer for yourself Julie but we agreed for you. :) Jennifer's journal is at www.caringbridge.org/tx/jenn when you have a chance please say hello.

I am being nagged to get into the shower so we can roll. Now the girl cannot wait to get over to the quilt show at the convention center. She is ready to shop for more crystals to put on her shoes - yesterday she was determined to stay at the hotel and now she wants to shop! When I was getting out her medicines this morning she told me she felt "in tip top shape!" - that was before she fell going potty a little while ago. Her hip is now really bruised and sore but that won't keep our girl down.
Oh! For breakfast she had: waffle, scrambled eggs, hash browns, watermelon, and bacon. Only a few bites of each but her eyes glaze over at the sight of a buffet.

I hope everyone has a great day!
XXXOOO

Thursday, November 4, 2004 2:26 PM CST

Hey!
They held us over an extra day so the girl could get an upper GI done this morning. It's not a pretty picture when her breakfast is delayed. :) I was really quiet getting out of bed early this morning so that I could hop in the shower before our appt. Of course the minute I was out she was at the door wanting to know where her breakfast was. eeeeek
She did great though and was so cooperative during the test. Cody held her barium and she drank when asked...go figure. If I was the one holding it she would have turned her little head. Cinda was there with her bag of tricks and things went so quickly. We probably would have been home before lunch but her b/p was on the elevated side this am. Rachel took it before going to radiology and it was something like 133/103 - so that was not good. It kept easing down though and it gave her a little more time to hang out in Child Life before we took off.

Our clinic appt on Monday was great and very productive. We covered so much ground and I am feeling very good about our plan forward. Dr. P and I talked about the possibility of doing IVIg treatments at some point too. She increased her methotrexate in hopes that at some point down the road it will replace more and more of the steroids. Evidently there is some shortage of the injectable methotrexate and some patients are having to crush up the pills to get by until another manufacturer takes up the slack and gets production going. We were lucky to get some and I hope it will be enough to last until they get their acts together.
On Tuesday morning we hit the orthotics lab and they fitted the girl in some gorgeous little white sneakers. They are the softest leather! The specialist there made some inserts to support these little feet so that she will not feel as wobbly. We are going to try and work her into wearing them slowly - starting out for an hour a day and then moving up. Maybe her feet will not ache so much at night.
My dear friend Linda came up and brought Madeleine's friend Catherine and Baby Lilly up to visit. It was so much fun to see you guys! I cannot thank Linda enough for doing this. It made Madeleine so happy and helped make her day brighter. She loved Catherine's Leapster so much! Granny went out and picked up one for Madeleine afterwards.
In the evening Charlie brought the kids up to visit. William, Josh and Kelly were awesome to spend some time with the crabby little princess. :) She is always so pleasant when she is getting her medicine. not! It was fun though and we all laughed and had fun - it's always like that when Aunt Charlie is around - you cannot help but have fun!
Oh! I cannot forget about our appt in the dental clinic on Tuesday! We were invited down for Madeleine to get her teeth cleaned and have a check up. What a fun time that was! Cinda was working down there and Madeleine loved everything about it. They even took some xrays and she learned about all the equipment they use. Have I mentioned lately what an amazing place TSRHC is? This dental clinic is unbelieveable! We were referred to them on Monday and by Tuesday morning Madeleine was seen - where do you get that kind of service?
The girl received a special gift this week from a generous donor. They phoned over looking for a hockey fan and well...we know a few of those!! Madeleine came to mind since she does have Stars season tickets and all. She was given a Mike Modano autographed puck and photo - is that cool or what? Terry brought her hockey sweater up so that we could take pictures of her being presented with her special gift. Have I mentioned what an amazing place TSRHC is? They make these kids feel so special. Thank you to everyone that made that possible. She will have these in her room forever.
Last night the "magic cop" was at the hospital to do his tricks for the kids. He is by far Madeleine's favorite entertainer that comes to visit the hospital. Officer Wheeler is with the Dallas Police Dept and he is one super guy. The girl was so excited when the volunteers came by and said to come to the atrium for magic. She went to her magic set and took out her magic rope. Then she used her rope to tie me to a wagon. Let's just say we had some 'roid rage going last night. I was roped and taken to a magic show.
I have to send a shout out to all the folks that take care of Madeleine while we are there. You all rock and my family will always be greatful to you for all you do for Madeleine. XXXOOO

Madeleine is tugging at my shirt - she is ready for me to get off the computer and hit the road. We are off to the quilt show in Houston. What a busy week! I am going to be a wreck by Sunday at this pace.

Thanks so much for checking in on Madeleine. She gets so excited to see your messages in the guestbook.
I have new photos but I will have to get those up when we get back from Houston.
love to all -
XXXOOO

Sunday, October 31, 2004 10:13 PM CST

I started trying to post this over 2 hours ago. The system has been busy I guess.

Boo!
We had the best Halloween - or as Madeleine kept saying "..this is the bestest day of the year!!..." over and over from house to house. She was adorable.
Since she is wobbly and tires quickly we took Grandad's golf cart. Mom drove and I helped the girl in and out and up any steps. Then I was there to reach any doorbells that were too high for little girls to reach. Most of the time she shoo'd me away so that she could do it herself. :)
I am so proud of my little pink Boohbah. When anyone asked what she was she told them a thing from PBS. We tried to hit as many homes that had circle drives as we could. That way mom drove her right up to the front doors and then I put her on the porch. Is that service or what? We had to walk for miles to get candy when I was a kid!
The highlight of our trick or treating was to stop in at Maxine's house to say hello. Then we worked our way back to Granny's. One of the last houses was a man who was getting tired so he told Madeleine that he was ready to call it a night and he dumped his whole bowl in her bag! She told him that her brothers would be thrilled. It is good stuff too!! We have our freezer stocked with chocolate now.
Back at Granny's she dumped out all her loot and started eating. When we strapped her in to go home she told me that she changed her mind that Halloween was nice and all but it was not the bestest day of the year anymore. She said that her tummy hurt too bad from all the candy she ate and now it was time for Halloween to be done.
We have her tucked into her bed and she is already sound asleep. I bet she is dreaming about the poodles she saw tonight.
Speaking of poodles, Little Willie is not a happy camper. He saw me packing our bags for the hospital tomorrow and he acting sad. This little guy is going to miss his mistress while she is gone. He will be stuck here with Andrew aka Analu and the cats to keep him company.

I will try and sneak in a chance to post while we are inpatient if I can. We hope to be home sometime Wednesday evening.

Several people have mentioned they want to come up and visit Madeleine while she is in the hospital - please DO - she loves having visitors and it sure helps us all. We would welcome anyone that can take the time to come up.

Take care!
xxxooo

Friday, October 29, 2004 8:16 PM CDT

Wow - it's Friday already...where did this week go?
Yesterday we had a very productive meeting with our OT specialist and it looks like she hit upon something regarding Madeleine's pain. She has benign hyper-mobility syndrome. That does not mean she bounces off the walls either. It's a genetic condition that affects the joints and could very well be why she is in so much pain. Christy said that dermatomyositis is already a very painful condition and then on top of that BHMS is also very painful. We will go over it all with the Doc's Monday morning at clinic but this could explain why she is so wobbly. It would also be why she cannot write or color for very long. Christy also explained that her fatigue is normal for her dx and that we just have to deal with that. As she gets older she will learn how to pace herself better.
I was able to speak to Brianna's mom and they are still at Children's. She told me that they might be there another 2 weeks. Her cultures came back negative and the Dr said that she would stay on IV antibiotics for 14 days after her 1st neg. culture. Then she has to stay free of infection. We are worried about how this sets back her pulsing. This poor girl does not need any more setbacks.
We were able to stop in and see our friends in different depts at TSRH before we headed back home. When I was loading her in the truck she asked if we could go home and rest until bedtime. She was so exhausted that when it was time for bed she told me "mommy, I am too tired to go to bed. Please carry me.." The poor girl was limp as I carried her and tucked her into bed. She rested well without waking and we were able to get her to school this morning! ::::doing the happy dance:::::::
She was tired but wanted to be there so bad since we will miss all next week.

When I picked her up at noon we went straight to mom's since she got in during the wee hours this morning. Madeleine had Little Willie on his leash and kept ringing the doorbell over and over shouting "..this thing does not work...they are not answering...no, it does NOT work.." Then she started banging on the door. I was trying to get lunch out of my truck and laughing at her like crazy. Mom had gone to bed when she got in since she had been in the air all night and it was time to get UP! She did and Madeleine and Little Willie were thrilled to see her back home. Andrew and William arrived when they got out of school and we stayed through dinner. The girl and Little Willie left a trail of toys all over Granny's when we left. We found out Analu is Andrew in Hawaiian. ha ha ha I pronounce it Anna Lou and you can imagine how much Andrew likes that -- Heather, Julie, Amy?? Are you listening? ;)

Monday is our day to check back in for Solumedrol after our clinic visit. I think with the information from yesterdays visit with Christy we will be able to figure out how to manage pain better for Madeleine. I cannot imagine how she must feel at times and it breaks my heart that she has to suffer so much.

Everyone have a great Halloween weekend - or if you prefer a nice Fall Festival weekend.
Madeleine is going to be the pink Boohbah. I do not know why she wanted that but she did and so that is what she is doing. Andrew will be a hockey player because he has lots of sweaters to choose from...I suggested that he be Dany Heatley since he has that one and we could find him a steering wheel to carry. He is pretty good at looking dazed so that would be just perfect. William is undecided but I think he should be a hockey player too since he has sweaters too. It's not like we have been wearing them anyway! UGH! I miss hockey! We have an assortment of other masks and such so everyone will be able to be something.

All our love!
xxxooo

Wednesday, October 27, 2004 7:51 PM CDT

Yesterday was busy with dance class and then the Little Dolphin meeting at TSRH.
She had a good night Monday night and felt up to dance. yay! It was great to be there after missing the last week. Madeleine caught up with her friends there. I enjoyed the quiet time sitting in the waiting room outside the studio listening to the girls singing as they dance. They do the most adorable little songs and those girls really belt them out.
We had lunch on the go afterwards to get up to TSRH. Madeleine watched Eloise on her DVD during the drive - she could be Eloise with all the things this child thinks up.
Terry was off so Madeleine and I dragged him along while we stopped in to visit all our friends. Our girl was met with smiles and hugs all around the hospital as we visited. It is such a good feeling to always be greeted with the enthusiasm Madeleine receives from everyone there. I know I must sound like a broken record but I feel blessed to have such a fine "team" of professionals looking out for the girl.
Little Dolphins was super - I am still not sure what they discussed in the kids meeting but they certainly all looked very happy to see each other. Terry was the only male in our parents support meeting :) but we did not gang up on him. I always leave there feeling good.

The highlight of the day had to be seeing the Child Life Specialists - the playroom is decorated with fall decor and looks outstanding! You ladies are awesome! I loved the pumpkin crafts on top of the cabinets especially. I am sure we will be seeing you guys tomorrow after we are done across the hall. :) Like I could even drag Madeleine out of there without stopping in your area first.

We were both sad to find out that our buddy Brianna is in Children's. She is the other little diva with the princess jewels in one of the photos. Both Madeleine and Brianna share the same dx so we try to keep up with each other the best we can. I am hoping their stay at the "other" place is short and they are back "home" at TSRH or HOME soon!

The girl was very tired yesterday but kept pushing on with little breaks for rest. We laid out the school clothes last night and thankfully she was up to going this morning. Can I get another YAY? yay! She was wobbly this morning but wanted to go so bad I could not bring myself to keep her in. When I picked her up Mrs. K and another friend mentioned they were concerned about her...that she seemed weak and did look well. The rash on her face is definitely worse. Her complaints of pain are increasing and that is the same thing that happened the last few pulsings. The longer she goes between them the pain seems to increase. She does not have much stamina either - Mrs. K said that she stopped painting and told her she was too tired to continue. That is the first time she has admitted to being tired while at school. Usually she waits until I have her strapped in the car before telling me how tired she is. Today she had to rest on the bed for a few minutes before she had energy to change into pajamas. I let her lay around the house the rest of the day. We played off and on when she felt like it and then tonight the boys and I played cards with her while we shared a pizza.

Tomorrow we run back up to TSRH for our psychology visit and for OT.
Madeleine is counting down the days until Monday when we check back in. She and Cinda already have their plan in place - those two are way too organized! Madeleine had been a little stressed about her next treatment but after seeing Cinda and being reminded of their plan she seemed fine with it.
I am looking forward to the Int'l Quilt Show in Houston the following weekend. It's going to be great to get out of town and check out some really awesome quilts. We went last year and did not begin to see it all. I cannot wait to hit the convention center this year.

An update on the medicine front - she has been going through a stage where she did not want any liquid oral meds. The zyrtec is banana grape which is a little odd and she hates it and her prednisolone is nasty too. For some reason yesterday and today she did not give me the usual grief about taking them. She takes her little pills with no comment - it's just the liquids. I think she was just angry about taking anything but maybe we are working past that. When she had her methotrexate shot this morning she was so big. In fact she was consoling Little Willie and telling him that it would be ok. It was so tender and sweet in her tiny voice and speaking to him like he was a baby. She insists that I go really slow pushing in the medicine - NOT to go fast which is what I think would be better..but in this case I will go with anything to please her.

A shout out to Alison - you are such a ray of sunshine! Your messages always cheer the girl up in a big way.

Thanks to everyone for checking in with us.
xxxooo

Monday, October 25, 2004 8:04 PM CDT

Terry and I thought we were so organized when we went to bed last night. Madeleine was in bed on time, school clothes were all laid out and her backpack ready. We did not do anything major on Sunday on purpose so that she would not be worn out - we wanted this girl to get to go to school! Then around midnight she started screaming in pain. Terry grabbed the girl and all her "gear" to move to our bed. The pain must have been awful because she was really sobbing and it was hard at first to make sense of what we needed to do. Sometimes I have to put her in warm water but she did not want anything warm last night. I have some of those hand warmer bags that you put in your pockets in really cold weather - those are super for just a little warm pack but she yelled louder when I tried that. All that she wanted was her calming lotion and for me to rub her legs. So we rubbed "MORE lotion!! MORE lotion!!" and watched PBS Kids. Thanks to the screaming her nose was runny and that made things even worse. We added pillows and then I offered up bribes to get her to take zyrtec. She was not having any of that so I slipped it in with some tylenol but that did not work. Luckily I was quick enough to grab it back before she dumped it on me....I should have known better but in the middle of the night I will stoop that low. It took a long time to get her settled down and in a position that she might sleep. That means we had: Madeleine, Little Willie, Hully, and Sami all in our bed PLUS Madeleine's stuff that she cannot sleep without. Her pillows, quilt, Baby Elvis and her purse with all it's contents. When it was quiet Terry rolled over (in his assigned area of the bed) and went to sleep immediately and Madeleine and I held hands and watched tv. When he started snoring Madeleine kept making a grrrrrrr very quietly. I guess Little Willie did not want her upset because he ran over and gave Terry and real life wet Willie right in his exposed ear! That's one way to make someone stop snoring.
OK, so we did not make it to school today. It was very late when she finally got some rest and she was congested and coughing when she woke up. Since we cannot take a chance on her being sick I phone our ped. and ran the girl over there. Dr. Sweet was swamped but her Nurse Practitioner Kelly checked her out and confirmed it's just allergies. YAY! Kelly explained to her that she has to take the zyrtec and hopefully it will help. It's easier to give this child a shot of something than to get her to drink a tsp. of zyrtec!!
We will visit with the OT dept. at the hospital on Thursday to see what else we can do to manage the girl's pain.

I have dance clothes out tonight. Madeleine is tucked into her little castle bed with all her junk. Every finger is crossed that she will sleep peacefully and feel up to doing at least the ballet part of class tomorrow.
We have our support group, Little Dolphins in the afternoon at TSRH and I know she will be up for that! This is something Madeleine looks forward to and so do I. The moms meet separately from the girls and have some much needed adult conversation.

We want to send a shout out to Julie! The kids and I hung out for awhile with Heather, Julie and Amy on Saturday to celebrate Julie's b-day. Terry wants us to get together again soon since he was stuck working. :) It's strange not to be seeing you guys a few nights a week - stupid NHL! It is so weird not to have any hockey -- and I don't want to hear about the minor league games that have been on! I miss hockey!

Take care!
XXXOOO

Friday, October 22, 2004 12:49 AM CDT

What a week!
On Wednesday we went on a class field trip to Country Critters. It started off very cloudy and I was thrilled with that. Madeleine has to have limited sun exposure so I had her coated in sun screen and she was wearing a hat. After a while the clouds burned off and it was HOT!
I let her stay as long as I felt comfortable then we bailed out. A dear friend let her sit on the back of their stroller to rest along the way and it helped Madeleine to be able to enjoy things more. Plus she did not have to walk over the uneven terrain. Thanks so much Linda! You are awesome!
We brushed the goats, petted the pigs, and went on the hay ride. Then the kids hit the pumpkin patch to select the perfect pumpkin. Just after that is when I told Madeleine it was time for her to leave. She was ready for pajamas and my bed. We hung around the house the rest of the day so she could rest. I did not make plans for Thursday since I knew she would probably push herself really hard at Country Critters. I am glad she was able to get out and have fun but I am concerned about the amount of time she spent in the sun.
Since I let her take it easy on Thursday to get back on track I figured she would be good for school today. Wrong.
She was up at 3 AM this morning. Wide wake and not able to get comfortable. ARGH! Thankfully she was not screaming in pain - she said she was just not comfortable. Terry and I put her in our bad and we watched PBS Kids all night. I wish they would not keep repeating the same episodes over and over. It makes the night drag by. I told Terry to get some sleep since he had to be at work today and I sat up with her. I did lots of hand holding and getting her drinks.
She is sitting in my bed right now cutting paper. When she is agitated I give her a pair of kids scissors and piles of paper to cut into shreds. I have asked what is wrong and why can't she sleep but she cannot tell me. This happens to her from time to time - I am not sure if it is the meds or the disease that does it. Probably a little of both. She has had quite a bit of pain lately and has been begging me to carry her even from the house to the truck in the driveway. One minute she will be skipping and the next she is trying to climb up my legs for me to carry her.

Alison! I just snapped the photo of the girl with Baby Elvis. I know it's terrible and my mom will wig out when she sees that Madeleine does not even have her hair combed. :) Keep in mind that the photographer (me) is beyond exhausted. The girl OTOH does not look like she will be sleeping any time soon. She has my bed piled with book, color wonder coloring books and markers, dolls, and a huge mass of Polly stuff. I might sneak down and crash on the sofa when she is not looking.

Jennifer - we love you so much too. You are an inspiration to me and I feel so blessed we met. I am here anytime you need me please call.

Marlene - you make ME smile. You are an amazing woman and we adore you.

Jo Ann - thank you for making my mom fall over laughing. Little Willie does not pee all over?! Ha ha ha ha ha ha ha I read that over the phone to my mom and I she has been laughing for days. Little Willie has a thing for her floors. He just loves them and when he goes he keeps walking...I am sure you get the picture. That means Terry has to clean up a trail rather than a puddle. Sounds like Willie and Buddy really are related!

I can never thank everyone enough for the messages you leave. Especially on days like this when I feel like throwing in my towel. We read them together and her face reminds me of why we keep fighting so hard. Her innocent smile and then the sheer joy when she squeals over a comment one of you made. Thank you for being with us. Thank you for supporting our tiny girl.

I hope I make sense today! I am running on caffeine at this point. :)
Everyone have a safe weekend.
xxxooo and big wet puppy kisses from Little Willingster

Monday, October 18, 2004 9:36 PM CDT

Happy Monday!
Madeleine woke up feeling frisky enough to go to school this morning. We dropped her off and did a little happy dance back to the truck! I had exactly 3.5 hours to cram as many errands into it as possible. It's a good thing I did because when I picked her up we went straight home and she headed for her pajamas. Then came the pain and crying. I know it's bad when she sobs like today. She alternated between yelling at me (it's a steroid thing) and crying over the pain for most of the afternoon. Finally it got much better this evening. I am really close to admitting that going to school (even for 3.5 hours) a few days a week is just too much. She suffers way to much afterward. Tomorrow is dance but I doubt she will go since today was so tough. This is one of the many reasons I am looking into a program that pairs residents with the family of a child with a chronic illness or disability. They get to be taught by a parent what it is really like to live with this condition 24/7. I am just so weary of watching her suffer.
While I am typing that I can hear the chanting in my head.....it's takes patience...this did not happen over night.....remission takes a long time. ugh

We did have some fun today in spite of her feeling bad. She and I just cuddled on my bed, we played our "gamegirls" together and read books. As Madeleine puts it "mommy and girl time".

I am going to sign off and sew while Madeleine is asleep..or maybe I will go sit and enjoy the quiet.
love to all! xxxooo

Saturday, October 16, 2004 4:28 PM CDT

I don't even know where to begin!
Yesterday we spoke to a group of area dental hygienists - see my short term memory is gone! :) They were at TSRH for a program called Special Care For Special Patients In A Medical/Dental Team Perspective. We joined the group when they arrived in the solarium for lunch. I was very impressed by the food our kitchen had prepared - nice work guys! Madeleine was treated to her usual Scottish Rite meal of grilled chicken and fries.
It was a pleasure meeting Joni Hopps and some of the other dental staff. We sat by another patient and his mom that are long time TSRH regulars. It was fun visiting with them and comparing stories. After lunch we headed down to the auditorium were we met the other patient and his mom - Madeleine and I were instantly in love with them! There were just the three patients (including Madeleine) with moms and there we were sitting front and center with what felt like a crowd of thousands looking down at us. :) OK - maybe it felt that way at first but once we started talking it was not so overwhelming. If I felt nervous I just looked over at Cinda's smile - she is such a calming influence.
Joni introduced all of us and then left it up to each mom to share as much about their child's diagnosis as we felt comfortable with. I do not hesitate telling what Madeleine has - the more people that we educate the better. The other mom's seemed to feel comfortable with sharing medical info too. We then answered questions from the guests. One of the kids joked that he felt like he was on Oprah. :) The girl had a speech prepared and then at the last moment whispered that I need to talk for her. Towards the end Joni directed some questions to her and she did start talking for us.
I learned quite a few things from the other moms and their darling sons. All three of our children have conditions that weaken their neck and the muscles that are used to swallow. That can be scary at times since they are at risk of aspiration. The guests had great questions and time really flew. They thanked us with lovely parting gifts and after some photos we were done. The moms stayed out in the hall and chatted for a few minutes before leaving. It was really a pleasure to be asked to participate in this and I hope we contributed to the discussion.
A big thank you to Joni for the invitation and if you ever need us again just call. We hope you call one day soon to let us know that we got that referral to your clinic. ;)

In all we had a nice day. Madeleine was really tired after we were done with the program so we just made a quick stop in the gift shop before heading home. She rested awhile before we went to mom's for dinner. Madeleine is not to thrilled because she flew out to Hawaii early this morning without us. I never did hear mom answer Madeleine's questions about why we were not going!

Alison - we will get a photo of Baby Elvis asap! :) I am sure she will love to pose for us.
A big hugs to Gary in Waco! Thanks for checking in on our girl. We adore your daughter - she is an awesome lady!
Stephie!! Little Willie sends big wet puppy kisses back at Max. He is so thrilled to hear from a fellow dog! He spends all his time with cats and gets very (VERY) confused about things.
Cinda - thanks for always being there for our girl.

Aunt Dana!! Madeleine heard that Andrew and William saw your amazing swing set before she did! She is really jealous and cannot wait to get to see if for herself. Thanks for seeing the guys today - they said Sam and Ethan were so precious. Had Andrew grown just a little since you last saw him?

Finally to Granny - We feel so bad that you are probably tired and jet lagged when you finally read this tonight from the big island in Hawaii...ok, we really don't feel bad for you!! Hope your flight was smooth and you were not too bored without this gang there to keep things interesting. We cannot imagine what you are going to do without us all there...if you want us to catch a flight over you can just let us know. Tell all those guys at the front entrance to the hotel "hey" from me and Madeleine - you know the ones that wear those long skirts. They are always so sweet! Willie misses you so much already - you should have seen him when we went by your house. He left you a few messages for when you get back. heh heh

Have a great weekend everyone. Thanks for spending some time with us.
all our love! xxxooo

Thursday, October 14, 2004 7:45 PM CDT

Yesterday the girl had a great time at school. She was exhausted afterward and a wee bit on the crabby side. I had her chicken & dumplings ready so she had lunch in bed and rested. We get a few really good hours a day now and then things go down hill. She starts having pain and is easily upset over small things. Last night we had dinner at mom's and she cried all the way back home that her legs were hurting really bad. She seems to ache all over by bedtime. We picked up some Gripe Water (thanks Aunt Dana!) for her stomache and that stuff really works! She still swells but this helps when I can get it in her.

We received a fun invitation from the dental dept at TSRH yesterday. Joni from there called and needed a patient & family to come for a program on Friday. She asked me and Madeleine to come as a patient representing our clinic. There will be other parents and their children with special needs speaking to dental residents about the care of our children. We are joining them for a luncheon and then for the family panel and case presentations. It is a day long program but we are only doing the luncheon and afternoon parts. Cinda will be speaking and Madeleine is very pleased about that. :)
I am excited about this because of a recent experience Madeleine had in another clinic. She was being seen by another physician in an office that I will let go unnamed. When the nurse approached her to prepare for the exam she commented on how we would have to help her (the nurse)...that Madeleine would need to be held down....and that kids always fight her on this ...
WTH? <-- that was what I was thinking - not her comment. Of course, Madeleine went nuts and eventually three of us had to hold her down. This was a very SIMPLE thing that was made into a huge ordeal for her. I am serious - we are talking about something really minor that was made into a huge issue. She will go nuts next time we have to go to this clinic - and we will have to go back there in a few months. Now, this "caregiver" said these things right in front of Madeleine. She was sitting there! You cannot say something like this in front of a child and not expect them to freak. I just about freaked and she was not going to be doing a thing to me. That was basically telling her - you are going to fight me and we are going to hold you down. We got what needed to be done but the way it was handled was just wrong and I will not allow that to happen again. With that under our belt Madeleine and I will be able to speak candidly about how she expects to be treated by any medical professional. Bring on the dentists! We are ready! :) Sorry! I did not mean to get on my soap box BUT we are talking about treating children the way they deserve to be treated. This is only one of the issues to consider. Tomorrow they are having presentations from the neuromuscular disorder clinic and orthopedic as well as ours.
I am thrilled they are having a program like this. Children need to have procedures explained to them clearly in a manner they can understand and/or be made as comfortable as possible. It is not necessary to traumatize them the way Madeleine was recently. There are so many other things to consider when caring for a child with special needs. I could list them for hours and I hope that I will learn a great deal more tomorrow.
We are so grateful to professionals like Cinda, Amy, Amy, and Jennifer that treat the patients at TSRH with complete respect. They work so hard explaining procedures and are able to address ALL concerns that come up. You ladies are huge assets to TSRH and we love you all dearly!

I keep having to pause and put on Polly clothes or rescue Polly clothes from Little Willie's mouth. :)

Madeleine and I took Little Willie over to visit my grandmother at her nursing home this afternoon. I love seeing how excited the little ladies there get when they see Willie. He is so friendly and loves to see them too. My grandmother looked really good and was happy to have visitors. Mom met us over there and we all had a nice time.

I-Wei - Baby Elvis is Madeleine's favorite rag doll that comforts her. She hand selected this doll with she was less than a year old and it rarely leaves her side. We have traveled all over the US with Baby Elvis. She was MIA in Hawaii for a few hours once and that caused a stir! Thankfully she was found and remains safe in her mistresses arms.

Thank you all for the messages that keep coming. They mean so much to Madeleine and I love hearing her reaction to the messages. She is always amazed that you have taken the time to read about her. This child is wise beyond her years and sometimes I have to remind myself that she is just four.

I owe so many e-mails to many of you and I will get caught up soon - I hope!
All our love ! xxxooo

Wednesday, October 13, 2004 9:36 AM CDT

Good morning!
Grandma flew back home to MIchigan yesterday and we were really sad to see her go. Come back soon! She stocked up the freezer with a supply of her spaghetti sauce for Madeleine and I am boiling pasta now. Before I left the girl at school (YAY!) she ordered grandma's spaghetti and chichen & dumplings for lunch. She is eating us out of house and home and has not gained an ounce! For one day her face was a little puffy but not at all like you would normally see on a child getting steroids. Her mood swings have been a real challenge this time but we are going with the flow. When I pick her up and noon she will be ready for her pajamas and a tray of food - pronto!

Terry had to be in Dallas by 8 this morning for work and I was not sure about how I was going to give the girl her methotrexate shot without a lap for her to sit in. I don't know why I even worry about these things! She sat on my bed holding Little Willie and Baby Elvis and got her shot without a peep. Maybe I mixed that up and Little Willie and Baby Elvis held her but I think you get the idea. :)

Yesterday she felt up to going to dance class and I went through the talk about how she does not have to do everything - she was just there to stretch and not to push herself. "I know MOM" Off she went and danced every dance like she was on a Broadway stage. Oh well...I tried. She was totally spent and was not good for much the rest of the day. Everything made her cranky or weepy and she had a lot of pain. It's is as if anything that she enjoys is going to cause her pain afterwards.

It is so quiet here with all the kids at school! Little Willie and the cats are sitting here looking lost too. I better get back to the stove so I will be prepared for the next feeding frenzy!

Thanks for checking in! I hope everyone is having a great week.
loads of love! xxxooo

Sunday, October 10, 2004 2:30 PM CDT

We had a very early morning wake up call from the girl this morning. She was wide awake at 4am and ready for a bowl of chicken & dumplings. ugh! She ate that and watched tv until 5:05am when she ordered another bowl. I made her a big pot yesterday afternoon so we had plenty but still!! At that hour of the morning? If she could have just held out until 8ish I would have been thrilled to make anything. She has grazed her way through numerous girl sized servings of: chicken & dumplings, cinnamon pop tarts, watermelon, sliced pear, pretzels, animal crackers, pudding, mexican rice, and sprinkles - like you decorate cookies with.
All that and it's just 2pm! She does not eat loads at once and I am thrilled she is finally eating again - but it is amazing to see what this tiny child can hold. If she wants a pear cut up she will only eat 3 or 4 small, thin slices and she is "full"...for about 15 minutes! Then it's "I'm hungry!" and on to the next thing. I made pop tarts and she ate about 1/3 of one. You cannot just put one pop tart into the toaster though!! You must toast both and then she just eats a few bites of one. The steroid mood swings are soooo lovely. We are all very weary and ready for our real Madeleine to return. She has grandma in the kitchen as I type and they are working on sugar cookies and who knows what else. This is typical of what she is like after her solumedrol pulsing - but she never gains any weight! It's crazy and the doctors cannot seem to answer me on that one. She does not seem to absorb much of what she eats. Think of a goose - lots of stuff goes in and lots comes back out fairly quickly. That is our Madeleine.

The quick version of our treatment last week is this:
Wednesday - we arrived and did the usual labs, weight etc. Spoke at length with our team of doctors and nurses about pain and other concerns. They said we will have a meeting on managing her pain better...ok. I am eager to get that done!! If I am understanding clearly we are at the point where she is trying to gain strength in her muscles. When this disease destroys mucles tissue it does not grow back. We are stopping the progression of the disease and now she has to get the remaining muscle stronger. That is my current understanding at least. She is still very weak and not getting around very well. It makes me a wreck seeing how often she falls. I left the meeting very unsettled and did not sleep much for a few nights. There has to be something else - anything else so that she does not have to have so much pain and weakness. I guess there is not but Terry and I have a hard time accepting that.
We got settled into our room and we never rec'd that steak and shrimp Gwen said that had been ordered :). ok so it was not the Four Seasons but they did make sure Madeleine had a supply of fries and jello. She had all her favorite people there to care for her and most everything went smoothly.
On Thursday morning they had just started her pulsing and she asked me for a paper towel. I reached for it and asked what she needed it for "I think my line is leaking and I need to wipe this medicine off me.." WHAT?! It was leaking and we quickly got that fixed without delay. Then by late afternoon her tummy started swelling. This has happened before but not this early on so they kept a close watch on it. We gave her some medicine to help but she freaked out and spit it all over the place. Very ladylike, dontcha think? Next time they sneaked it into something else so that she would not know. I am not sure it helped much and the swelling went up and down. She gets so much air in her stomach that it looks like she swallowed a whole watermelon. I made a huge mistake and made that very comment on the phone to mom Thursday night and the girl heard it. It was around 9pm and she demanded I get watermelon. Me and my big mouth. She got very unhappy and threw us all out. I just got up and grabbed my purse to leave and she told me I was not going anywhere - but to get OUT! Did I mention how I love the mood swings? Terry and Grandma hit door and went home. I just crawled into my corner of her bed and played Gameboy. She kept asking me when her watermelon would be there. If I answered her (which sometimes I just ignored it) I told her that it would be there sometime. You can see where this is going, right? 2 am, 3something am, and so on. "where is my watermelon? when will MY watermelon be here" she would take naps and wake up with her questions. Thankfully when Terry arrived at 8 he had a ziplock filled with watermelon. She was happy and I was tired. While Terry had run to the cafeteria to get breakfast she was sitting in bed eating and watching tv...or so I thought. I was in the bathroom combing my hair when this sweet little voice says "mom, will you come here please?" ok, just a minute - what do you need? "I need you to come put my IV back together" That got my attention. YOU NEED WHAT? She had just taken the coband off - thankfully - and needed it put back on. Her hand had an itch and so she took it apart and took off the arm board so she could scratch. After all the IV's she has had she has never done that one. Usually she gets mad when a nurse wants to take the wrap off and look at it.
We were in the Child Life playroom on Thursday when Aunt Dana arrived. Madeleine was so excited that she came to see her. They painted and got a little time to visit. Later on after work Heather and Amy popped in and played with the steroid princess. On Wed. night Heather had brough a little black stuffed Poodle that she and Julie had found for Madeleine. It is so cute and looks like like Little Willie!
Madeleine also helped Cinda with some work she had for school. That was lots of fun for Madeleine and she felt so big to be doing it.
When her medicine was done on Friday her nurse, Rachel, was right there and ready to get that IV out. Cinda was there on hand and Madeleine started taking the coband off and someone said something along the lines of did she just want to take it out herself? - she took that seroiusly and went after it. Rachel assisted :) and handed her the adhesive remover pads and she worked over the strips of tape until she had them off. Before they were ready for the tube to come out Rachel told her that she would have to get the gauze pad on quickly and apply pressure. Madeleine, cool as a cucumber, just eases the tube out. Mom, Grandma and William had just walked into the room to see this last part and we all burst into cheers that she did it herself. oooh she was not happy with us. We got told not to say things like that. This little girl is something. She let Rachel finish up and put on her Blue's Clues bandaid.
She did get the stomach cramps and diarrhea sooner this time than she usually does. We had to listen to her sobbing all the way home on Friday. I stopped and let her stand for a little while but it really did not seem to help much. She just wanted me to hurry and get her home. She was begging me to drive faster and faster. Of course, it felt like it took 10 times longer to get home since she was so unhappy. Those stomach cramps are awful and she has been sore from them. She seems to have turned a corner this afternoon and is not quite as unhappy. We had a huge meltdown last night. She needed a bath and when Terry put her in the water she just lost it. I guess she was too weak and just the feeling of the water against her skin was more than she could take. I dried her and put her in bed with cries of how she was not tired. It must have taken all of 5 minutes for her to be sound asleep.
She and William have been playing a little since he got home this afternoon. He is so excited that tomorrow is his birthday and I am betting he won't sleep much tonight. As long as he is quiet that is ok with me. :)

I have photos of her and the IV removal and others to add. They are on my mom's memory camera so as soon as I can get my hands on that I will update the photos.

Thanks for reading and I hope everyone has a wonderful weekend.
All our love! xxxxoooo

Friday, October 8, 2004 9:47 PM CDT

wow. I am beyond tired! We made it home about 2 hours ago after the long drive in traffic.
Madeleine screamed and cried for almost all of it. After getting her solumedrol infusions her stomach tends to swell with air. It gets so huge it's like she swallowed a whole watermelon. Of course, that has to happen within minutes of leaving the hospital. She was miserable and there was not much I could do. Finally I pulled off and let her stand up a few minutes and yell it out. She always gets diarrhea following all the meds and this time the cramps were setting in before I could get her home. The poor baby stood in my room sobbing while I got unloaded and greeted Little Willie. She had to lean against something to hold her up because she was just miserable in her own skin. When that finally passed she laid down on my bed and curled into a little ball wrapped in her quilt.

I don't think I have slept for more than a few minutes at a time since Tuesday night. Terry just walked in from work so I am going to sit with him and go over our days together. He has to hear all about how Madeleine took out her own IV with just a little assistance from her nurse and Cinda. I will fill everyone in on that tomorrow - hopefully with photos! I was so shocked when they asked if she was going to do it herself ! I was like jumping to grab a camera and snap a few shots. Plus I took one of Madeleine with her Aunt Dana when she came to visit on Thursday. I will gets those uploaded and share them pronto!

Alex! Hey! Yes, that is Andrews new ride - pretty cool, eh? I don't think I will be able to keep him at home now that he is out on the roads. Madeleine cannot wait to meet her new Uncle Alex.
It was such a thrill to see Aunt Dana on Thursday. She looked so incredible! I am so pleased that she just had her scans and remains cancer free. Not only does she have cancer under her belt but she has been caring for her son who has AML. Thank you for taking time to come see Madeleine. It meant so much to all of us. ( btw Mom recently had her scans too and is now a 4 year survivor! YAY!)

I am so honored to see a couple of posts from ladies that followed Allie Scotts story. She is a little angel who earned her wings recently after a brave battle with AML. Her story is at www.scotthousehold.com - I warn you have kleenex ready. Her story is so beautiful and she is so lucky to have Jenny and Andrew for her parents. Thank you to the girls from Allies Angels that have taken time to check in on our Madeleine. I really appreciate you.

I am really going to go rest now. Thanks for sticking with us and I promise tomorrow I will fill in details. She really did the IV removal herself! Plus we have to report in on our clinic visit from Wed.
Love to everyone -
xxxooo

Tuesday, October 5, 2004 8:15 PM CDT

Our bags are packed and the girl is sleeping in her bed. We are off to TSRH early in the morning.
The plan is to get her solumedrol pulsing daily thru Friday evening. I will let everyone know how our clinic visit goes after we are settled in.
Madeleine is hoping that Ms Trudie and Cinda are ready for her. Cinda, do you and Madeleine have your plan in place? :) Trudie, we are going to be calling on you!

It's been another tough day. The girl had some moments of energy and when she did it was great. She woke up feeling awful but rallied and went to dance class. The ballet parts are very good for her muscles and it's not like she is going to Julliard. She can just go at her own pace and do what she feels up to. After that she got really moody on us and really just wanted to lay around.

I hope everyone has a peaceful evening.
xxxooo

Monday, October 4, 2004 4:22 PM CDT

We had a fairly quiet weekend here. Madeleine's energy is gone as quickly as she can gather it. It is unnerving to see her laying around and not really interested in going anywhere or doing much. We played a lot of Polly Pockets and Gamegirl - anything we can do laying down. I think her arms and hands are aching because she will not write or color for more than a few minutes at a time. She is still complaining of quite a bit of stiffness and pain. Sunday she mentioned that her neck was hurting and felt weak. That concerns me because even though I know her neck muscles are weak, she has never really complained about pain there.

The girl received a beautiful gift from Granny and Grandad over the weekend. It's a gorgeous new necklace! She loves it and you guys are so sweet to have done that for our girl. We love you both! I am thinking she will want to loan it to me when she is not wearing it. heh heh

Grandma arrived from Michigan Sunday afternoon and the kids are so happy to have her here. She was very surprised to see how much worse Madeleine looks now compared to last time she saw her in June. Little Willie went with us to the airport to get Grandma and he was so excited to see her. I guess he has a good memory like his mistress!

I am thrilled to report Madeleine went to school this morning. She was happy to see all her friends and have a little bit of normal life. While she was at school Grandma and I hit the grocery store and stocked up. I can smell her spaghetti sauce and meatballs now - yum! We are going to try and have an early dinner before the girl is too tired to enjoy it. She seems to be eating a little more but still not near her usual. I am worried about how fragile her little arms are - they seem to be getting more skinny.
She is holding court now with Andrew, William and Josh to play with this afternoon. They are spending time with her before she is off to the hospital Wednesday morning.

Take care! xxxooo

Friday, October 1, 2004 2:02 PM CDT

I cannot believe it's Friday already. Madeleine does not feel like getting out today so we are staying in. She is still in pajamas and wrapped in one of her Project Linus blankets. We have rec'd 2 at different times during hospital stays and they are so nice. One day when things are not so busy around here I am going to find out more about Project Linus and find out how I can make some blankies for kids in the hospital.

Our girl was so big yesterday and did a super job getting through her tests. She had her sonogram first and those are a piece of cake. Next came the VCUG or voiding cystogram. We had wonderful and patient techs and staff that made it as pleasant as possible. Madeleine likes to know exactly what is going to happen - every detail! Cinda met us early before our appts and went through everything that would happen. She even had the warm gel that they used during the sonogram. I have to admit I was blown away though when she took out a catheter and then they catheterized this special doll. The look on Madeleine's face was so serious and Cinda had her complete attention for that! They talked about the special "water" or contrast that they would be putting in her bladder. If I ever need anything done in a hospital again I am going to demand a Child Life Specialist come and explain it all to me! This profession needs more attention because these folks are doing amazing things for children. When we went in for the VCUG she seemed nervous and even closed her eyes at first and told us that she was going to just take a nap. Ha! There was a moment at first that she got agitated so we started pulling out gifts. When all else fails BRIBE! I had brought the new Clifford's Puppy Days DVD and a Bratz doll. The tv in the room did not have a DVD player so Cinda made a quick phone call and we had a portable DVD player in two shakes of a lamb's tail! Thanks Jennifer! You must have sprinted! It helped for her to watch her DVD some while the set up was going on. The Dr. was wonderful with her and showed Madeleine her heart beating and all sorts of other organs on the screen. We marveled over the huge bladder inside such a tiny girl. :) All the Dr saw at that point was a small amount of transient distal reflux. She assured me that was not anything to be concerned about. The other doctors will be going over the films and getting with us soon. When they were ready for her to go potty she could not go laying down. They let her stand up and she said she was fine and did not need to anymore. Now, we had just seen that massive bladder so there was no doubt she needed to go. After groaning and trying she had had enough of us all. They let her go up to the Child Life playroom to play with the hopes that she would relax and potty. No dice. She would not go - "I do not need to" was all she would say. We visited a bit and saw Brianna looking awesome! She is getting stronger every time I see her. They started her IVIG treatments a couple of weeks ago and she is looking so much better! Madeleine was already tired and told us that she wanted to go home. We went ahead and left since she was not going to GO for us and she was really getting crabby. I was not out of the hospital garage before she started crying quietly. She was tired and hurt and just wanted to go home. By the time we made it home the quiet sobbing had turned into all out boo hoo's.
I got her into pajama's and she spent the rest of the day in my bed. We (Terry and me) did the happy dance at 7 pm and we worked her towards her own bed. This is really close to a repeat of what she went though before her last pulsing of solumedrol. She was completely exhausted and had no energy left and we are close to that now. There was nothing left this morning, even after sleeping all night she was not up to going to school.
It's still a long ways until Wednesday when she gets solumedrol again. I better send Terry to the store for more cherry Tylenol, Advil and Motrin.

The kids are excited because Grandma is coming in from MI on Sunday afternoon. Madeleine asked her to come and be here for the next time she was in the hospital.
Granny gets back from Indy tonight - hurry up Granny! I can only play so much mama and baby here!!

I must run and play Polly's or "Gamegirl" again. She is deciding what we are going to go. You guys realize that if you are a girl then it's not a Gameboy - it's a Gamegirl.
No time for proofing this so I hope I make sense!

Thanks for the messages! Marlene you are awesome and we love you!
Madeleine is always thrilled to see new messages and we read all of them (old and new) often.

One more before I run - thanks Cinda. You are the best! What else can we say? You know how much we love you.

Have a wonderful weekend!
xxxooo

Wednesday, September 29, 2004 9:44 PM CDT

She sleeps! She eats! Yes!!
Last night she stayed in bed for the long haul and we did not hear a peep until 6:30 am. yay!
She looked rested and seemed a little perky too. Getting her into school clothes took some bargaining but we did it. Today was class picture day and she did not want to miss that if at all possible. When I went to get her she was wiped out and ready to crawl in bed. I know 3.5 hours is not long but she gets fatigued fairly easily still. She laid down and I helped her get on soft pajamas and she ate one tiny piece of chicken. We have been stressed out by her losing interest in food. It is just not normal for Madeleine not be to grazing all day long and even into the night! Finally something clicked and she had a couple of ounces of cereal tonight - then she even had a little pasta. I know that's not much but it's a start! Before we tucked her in she had a few little slices of apple to hold her over until morning. Hopefully that little bit of food will have been enough to get her back on track.

Tomorrow is her renal u/s and VUIG (? or VGIG?) I am too lazy to get up and look through our appointment book - that is getting to be the size of most phone books! Anyway, it's a procedure where they are putting contrast into her kidneys to see what they are doing. I will have all the details afterward. It does not sound very nice but I am sure she will handle it just fine. As long as they let her watch and give instructions she can do just about anything. Cinda is meeting us before and will be with Madeleine every step of the way. I don't know what we would do without her and the other Child Life Wondergirls.

Thanks for all the wonderful e-mail notes and photos. I have not had a chance to respond to all so please be patient with me.
Madeleine is thrilled with all her new Auntie's that are cropping up. The girl was giggling and doing a little dance over the idea that she had all these cool aunts that she did not know about - "WHY didn't you TELL me MOM?!"
You are all wonderful! Your support and Madeleine's little smile gets me through the day.

I hope everyone has a peaceful night and sleeps in her or his own beds. ;)
xxooo

Tuesday, September 28, 2004 7:58 PM CDT

Our restful night ended last night around 10:15pm. The little miss woke up in pain and that lasted off and on all night. She was not completely miserable like the night before but she was very restless and hurting. It was hard for her to get comfortable and stay that way. I spent the night on a corner of the bed with my feet on Terry. He was stretched across the end and Madeleine was diagonal in a tangle of her quilts and pillows. We did not dare move when she was asleep because if we moved she would stir. It was a long night of trying to keep Hully, Sami and Little Willie out of her space. They took turns sleeping on Terry and me - one big gang in the bed. I would not have been surprised if William and Andrew had showed up. Tonight I want MY bed back!!
Madeleine woke up sore and crabby. She was not standing or walking and I could not get her to eat much. That is not normal for her! She usually has 2 or three different breakfasts before 9 am. I had to force her into clothes and off to Little Dolphins because I knew if would help bring her out of the funk she has been in. It was a nice group today and the other mom's attending seemed to be pulling out their hair too. Is it a full moon or something?? All our kids are on a roll this week!! It was good to share war stories with the other moms. The kids seemed to have a good time in their meeting - they must have been plotting against us because Madeleine is not telling what they discussed.
I have decided that from now on when she is refusing to walk I am going to scoop her up and go to TSRH. When we got there today she told me that she was ready to walk. ARGH! She had loads of fun chatting and playing with Brianna. Brianna, is a little 5 yr old with the same diagnosis. We are often at the hospital at the same times and hook up to play. They looked like twins today - both in pink and green outfits wearing matching hats! Mom had found these adorable hats on one of her business trip and she grabbed one for each girl. We did not plan the coordinating pink and green - that just happened! It was so strange to see them wobbling down the halls together. Both girls have the same little hobble when they walk. It was great to see Brianna looking much stronger and starting to feel better. She has had a hard time lately but is getting back on track now. I want more moms and doctors to be aware of this condition so little ones like Madeleine and Brianna don't have to suffer for so long before getting a diagnosis.
The walking and Little Dolphins did wear her out and she let me know she was ready to go home. We got home and back into pajamas so she could rest. I just got her in bed - HER bed and hopefully it will stick tonight. I know she is really not doing well when she ends up in my bed because we have a big reward system in place and she earns Target gift cards for sleeping in her own bed. Let's hope she gets closer to her next one by morning!
If we are really lucky she will have enough energy to make it to school tomorrow morning.
That would be awesome!

I learned more about Thursdays tests from another mom and Cinda today. Maybe I am not as nervous now but we are still not looking forward to them.

Aunt Sue! You are too funny and I hope we can see you soon! Maybe when you are here in Oct for LTN. I have missed you!
I rec'd wonderful news that Aunt Dana and Sam went home from the hospital. If anyone gets a chance Sam's page is www.caringbridge.org/tx/sameisenberg He has been through a whirlwind of ups and downs this year and I am so happy for them that they are back home. They have raised a mind boggling amount of money for the leukemia & lymphoma society! I wonder if Sam is sleeping in his bed tonight? ;)

Thanks for reading! 'night all!

Monday, September 27, 2004 7:48 PM CDT

Madeleine and I are so tired. She had a really bad night last night and slept with Terry, Little Willie and me...well, I am not sure if there was any sleeping but we were all together. When Madeleine would drift off Little Willie would get worried and go stick his nose to her cheek and she would yelp. He was just concerned about her so I ended up grabbing at him when he would inch towards her. She was restless and could not get comfortable. In addition to the usual pain she had her belly hurting. It was entertaining to watch her swat at Terry when he started to snore. I am not sure if she was mad because he was asleep or mad because he snored.
When the alarm went off I did not feel like I had been to sleep yet. Since I was watching the same Dragon Tales that I had seen 3 times over night already I am not too sure if I went to sleep.
We ran to Dallas and at the clinic they did the usual labs and we sat for the usual wait :)
Then found out that the OT person did not come in and so we were not going to get together on pain issues today. That will be rescheduled for another day.
Madeleine was not interested in going anywhere but home so we came back and rested.
I had already scheduled all the kids for flu shots and Madeleine for her pneumonia vaccine. The pediatrician's office had ordered it and then we scheduled this last week. I should get the mother of the year award for this. Not. If I had a crystal ball this would have been the time to have used it. After the night from hell the girl was not ready for a shot (much less 2) that would have to go into the muscle. The nurse and I let Madeleine help us decide where she would get them and it would have been hard to get it into her tiny arm muscles. Well, we went for the tiny thighs - yike. I feel like crap tonight for putting her through it. I know it is better and to keep her safe but it's heart breaking to see her in so much pain. She has lots of trouble with her thigh muscles and they are always aching. By the time I had her home she was not walking for us at all. I got her into a warm bath for a little while and that helped some. I stood her up to slip on her nightgown and her legs would not hold her up. She fell asleep in my bed about 30 minutes later and has not stirred. I made her a cocoon of soft blankets in her bed - this has been suggested by a few people. She is tucked in all warm and cozy. We have not had back to back all nighter's so I am pretty sure she will sleep until 7 am or so....or so I hope!
When we checked her weight at the clinic she had lost almost 1 lb. That is not great news when you only weigh 28 lbs. We were not able to get her to eat today - she had part of a sugar cookie when we were at TSRH and then 3 or 4 bites of rice tonight. This girl needs to rest and wake up starving in the morning.

Tomorrow is Little Dolphins support group. Madeleine really loved this so I hope that she is not in so much pain tomorrow.

I want to send a big thanks out to my dear friend Diane. She came in town this weekend and spent Sunday afternoon/evening with us. Thanks for being such a sport. You did not even cringe when Madeleine dragged you off to play baby and mama.
William is wondering if you are getting that reading done yet - and Andrew is ready to win at 13 again. They are not too demanding are they? Come back soon.

Thanks for checking in. I hope everyone (especially Madeleine) sleeps well tonight.
xxoo

Friday, September 24, 2004 9:03 PM CDT

The little girl is bundled in her blankets and hopefully dreaming of poodles and chocolate unicorns. She was a handful this week. I am very concerned about her having so much pain and I spoke with one of the clinic nurses a couple of times this week about it. We went ahead and made an appt for Monday morning to see what else can be done to manage the pain. I expect they will also check enzymes to see what is going on since our last labs.

The last couple of days she has been fussy about taking her meds. Yesterday she was down right NOT taking them and we were butting heads. I kept trying to hand her the tiny folic acid tablet and she threw it back at me. After going back and forth for a few minutes I tried "you know, Lynn has probably already taken hers this morning. Remember talking to her about how you both take folic acid almost every day?" The look she shot back at me was priceless and she replied "MOM, Lynn has to take folic acid every day that she does not get a methotrexate injection." ok, remember gentle reader that she is only 4 years old. Yes, she used those exact words! Injection not shot mind you! We were kind of just staring at each other through this exchange and all I could think to say after that was "you get methotrexate injections too" Pretty lame, eh? She gave me a "duh" and popped the pill in her mouth. ARGH! All that just over a pill! See why I am so worn out by bedtime?

The big news today was that Cinda from TSRH came out and met with her class. I got choked up when Madeleine put her arm around her and said "this is my friend Cinda and she is my Child Life Specialist". It was so sweet! Madeleine was very proud to share Cinda with her friends. This is the sort of presentation that should be done in all schools. In fact I know many adults that should sit in and listen to Cinda's talk. Thank you Cinda for coming out. Madeleine loves you so much and you take such good care of her for us.
I know you will be there for us next week when we prepare for her kidney scans. We both will need you. :)

Note to Linda - as you requested I put the photo of Andrew and his good friend Mr Twain in the photo album. It's not showing up for me so I will check it later to see if it worked. I will direct him to you when he gives me grief about sharing it. :)

Thanks to all for the wonderful messages. Madeleine loves hearing them!

I think the girl is paging me. When she is hurting it is hard to get comfortable and that usually means more drinks of water etc.

Goodnight!

Wednesday, September 22, 2004 8:54 PM CDT

I managed to drag the girl to school this morning. She was not thrilled with me at all. Also, I thought it was picture day so I used that to encourage her. It was not picture day and when she found that out she looked at me really ticked and said "hrump" with her arms crossed. OK I made a mistake! It happens! ok...it happened twice this week. I had written in things on my calendar but on the wrong week. I thought Little Dolphins was yesterday but it's next Tuesday. Cinda saved me a trip over when she realized I had it all mixed up. Thanks Cinda!! In any event Madeleine went to school today and I think she had a pretty good morning there. Her face was really red this afternoon and I noticed the rash on her knees looked almost purple. I keep telling myself that more skin involvment does not mean that there is more damage going on to her muscles. But, it still makes me worry. She had the burst of energy and the crabbiness that comes on Methotrexate day. Hoo boy It's always interesting when she gets that "stuff". One day there is going to be a better drug with less side effects...I hope I see that day!
Mom heated the pool and we put Miss M in the warm water tonight after the sun went down. She paddled around and played with William and Little Willie. This nutty poodle has started diving underwater to get his ball. He had as much fun as Madeleine swimming and then getting out to shake water on Granny...then get back in the pool, then out to shake then repeat.
I hope the warm water helped some but she was crying in pain by the time we arrived back home. She is bundled in her softest warm pants and nightgown. Hopefully the ibuprophen will kick in soon and she will rest. It did not take Little Willie long to fall out cold in the middle of my bed.
Tomorrow we are resting up so that she will be ready for her big day Friday. Cinda is coming out for her school talk and Madeleine cannot wait. I know that I have the correct date so no wise comments from the peanut gallery! Madeleine and Cinda had a phone conference to cover what issues they are discussing with the class - these two make a great team! Since Madeleine plans on working in Cinda's dept. at TSRH maybe this will start counting towards her intern hours? :)

Thanks again to everyone that has left messages! We appreciate each and every one.
Andrea - that poem! She has had me read it over and over. It is precious and so are you! You may have to e-mail the girl a photo of your kitty.

Thanks for spending time with us. :)

Monday, September 20, 2004 8:28 AM CDT

I thought we would give a quick (ha ha) recap of what is going on for those just joining us.
Madeleine is 4 years old and was diagnosed with juvenile dermatomyositis in March. It was a relief to finally figure out what was going on with her. She had been suffering from pain and weakness for many months. The doctors were not able to come up with what as going on with her. Then she developed the skin rash that is typical with her disease. All 10 of her cuticles were bright red and swollen, cheeks flushed and purple eye lids. The cuticles gave the pediatrician and her CNP the clue to finally figure this out. They called and had me take her to get more blood work. Her muscle enzymes and liver enzymes pointed them in this direction. We were immediately sent to Texas Scottish Rite Hospital for Children to be seen by specialists there. They performed tests and confirmed the diagnosis. She had a MRI, muscle biopsy and swallow studies to start off. The swallow study was amazing to watch and they made it a pleasant experience. I was told later by my aunt that they don't make it that easy for adults. :) The study showed us how when she drinks the liquid stops just for a couple of seconds over her airway before she is able to push it on down. That was a very scary thing to watch!
"The body's central muscles, those that are in and near the trunk, such as the neck, shoulders, back, abdomen, and the hips will slowly become weak. The muscles used for awallowing and breathing may also become weak. This happens after the central muscles are already affected."
There is a long list of not so fun things like stiff and swollen joints, muscle contactures, calcinosis, and vasculitic ulcers. This is a very rare form of muscular dystrophy and the arthritis foundation has lots of information also.
We are blessed to have a wonderful team of doctors, nurses, therapists, and Child Life Specialists all working together for Madeleine. We take steroids everyday and give her methotrexate injections at home. She has to be inpatient for her pulsing since the solumedrol causes her blood pressure to go up. They give it to her over 4 hours for three days.
This girl is a fighter and she will not let this keep her down. The downside to that is when she feels good she goes like crazy then crashes. Getting fatigued is not a good thing but I have not been able to get her to understand that. She went to school 3 days last week and has really suffered from it. This morning she woke up feeling really tired and sore so we are keeping her home. One day I hope we figure out how to balance this act!
Tomorrow is her support group "Little Dolphins" at the hospital. It's a group of little girls all coping with various conditions.

Thank you so much for reading. Madeleine loves reading your messages. When I read them to her she gets the sweetest smile.
Take care!

Sunday, September 19, 2004 1:29 PM CDT

Last night we had dinner served by the Big Bad Wolf...seriously! Charlie took us all to The Magic Time Machine to celebrate Kelly and Sean's Birthday. Each one of the kids had in mind who they hoped would be our waiter...no one had mentioned the Big Bad Wolf! It was great fun just very tiring for a little girl. She had rested all all day to be ready and I am sure that helped. You would have never known Madeleine was sick just by looking at her. She had so much fun watching for Superman, Waldo, and Dave the Barbarian. I think the entire cast from Lord of the Rings was there too.
The girl has been in pain quite a bit and I am supposed to speak with a therapist from the hospital tomorrow on what else we can do. They upped the amount of tylenol and advil I can give her but they do not seem to help any longer. She is so little (still weighing in at just over 28 lbs) I hate giving her too much of anything. I am even wondering if Cipro is causing some of the aches and pains? Guess what? When I asked one of the nurses she gave me the "you know, everyone reacts differently..". This is hysterical since they usually tell me that no one reacts like Madeleine does. When I threw my hands up week before last about the methrotrexate I was told "that does not wash" methotrexate does NOT cause that. ARGH!
I want my child to not be in pain. IMO her being in pain says that the disease is still doing it's "thing". Patience. I know. We have been told countless times about how long the journey is to being in remission. It would be easier if I could talk to more parents of children that had been in remission for any length of time. All the parents I have met so far have been battling this ugly monster since diagnosis. One recently had been getting solumedrol pulsing 3 days a week for 2 years. They had just added in IVIG to the solumedrol and I am eager to see if this helps.

A shout out to Heather - Madeleine just told me to let you know that she is sorry about tossing you from her room at the hospital last time. She said she loves you and I made her promise to not throw anyone out again. Do you think she included Andrew in that? ha ha I bet she had her fingers crossed behind her back.

I am being paged to play Polly's..oh boy.
Hope everyone has a lovely Sunday and a great week.

Wednesday, September 15, 2004 7:32 PM CDT

I just tucked the steroid princess into her castle bed. It has been a long day! We gave the girl her methotrexate shot really early this morning before getting ready for school. It tends to make her a mini maniac and I felt bad for her teachers when I dropped her off. About 2 hours after she gets it there is no stopping her until she crashes. It is like watching a little hummingbird flying all around like crazy. I got a promise when I dropped her off about pacing herself today etc. Well, I doubt there was any pacing done. When I picked her up I offered Ying Cafe for lunch and she turned me down flat. "Take me home!" I cannot recall her turning down Ying Cafe.
She has been exhausted and spent most of the afternoon laying around. There was tears when I had to take her out to get Andrew and then to get William and Josh.
She has been crying off and on and then she asked for Tylenol around 6pm and wanted me to call Dr Punaro. NEVER has she wanted me to phone a doctor. Normally she will not be truthful with the dr's for fear of what they will want her to do next. I guess I should not be bummed since we had great days Monday and Tues but it still seems soon for her to be in so much pain. She is usually "better" for more days after getting her solumedrol.
We gave her a big dose of Tylenol and put her in a warm bath until it was time for bed. Hopefully in the morning those little legs will not be hurting so much. I wrapped them in one of her soft blankets. Her skin feels hypersensitive when she is having pain lately. Soft comfy blankets and pajamas have been all she wants on these days.
Our friend Brianna checked back in to the hospital today. She has the same JD as Madeleine. This little one needs prayers too. They are about to start IVIG treatments next week and she will be getting a central line and g-tube. It is breaking my heart to see her suffer so much. This disease is so ugly and yet gets overlooked IMO because it is so rare. Please be generous when you give to MDA.

Before I say goodnight I have to give a shout out to my loved ones (friends and family) in the areas affected by the latest hurricane. JoAnn, stay safe and promise me you will not be making it on powdered milk and tuna. I will mail you a care package if you get to that point!
Everyone in the path please stay safe and you all are in our thoughts and prayers.

Goodnight

Tuesday, September 14, 2004 12:50 AM CDT

I overheard the sweetest conversation Sunday night. Madeleine was in the tub and having a tea party with Little Willie. He is so nutty! I have never seen a poodle that loves water so much. I was posted outside the door since I had been told to leave. "I need my privacy MOM"
She explained to him in her sweetest little voice about how she was going to be going to school the next morning. "mommy will be here at home, baby. You won't be alone and I will be coming right back when I am done". This kid can be so precious and funny at the same time. She did indeed feel up to school Monday morning and had a super time. After stopping off for new ballet shoes I got her home and she stayed tucked in my bed until dinner. We had a nice meal with a friend from out of town. Madeleine brought her Game Boy along so she could teach our guest all about playing the Sims.
This morning she was moving pretty slow and let me know she did not feel up to going to dance class. After about 2 hours of various breakfasts and resting she got up and announced that she would go. "I am just going to watch. I am not going to dance" By the time we left she was dressed in her gear and ready for class.
I think the Cipro is making her feel better because her mood has been really good. Hopefully it is giving that infection the what for!
Right now she is in the middle of my bed with a big bowl of rice from Taco Grill. That makes for a very happy little camper.
There is a big difference in her now from this time last week. Getting her medication really made a huge difference. I am just hoping it lasts.

Saturday, September 11, 2004 9:13 PM CDT

I just added new pictures to the photo album tonight so check them out when you can.
Today she spent most of the day lounging in her pajamas and eating. She ate a huge 32 oz container of rice from Taco Grill! That started last night. She ate a bowl full and went to sleep. Then this morning she had the rest for breakfast. Then she ate her way through the rest of the day and still weighs in at just over 28 lbs. Figure that one out! Mom heated her pool and we put her in there tonight to let her move those little legs some. She was really not interested in doing much today so we just let her lay around. Hopefully by Monday she will be up to going to school and seeing her friends there.
The short version of Wed - Fri is this:
Wed - we arrived to check in and visited with a few friends along the way. We ran into Ben and his mom Heather at the lab. It was so great to see them and that they were not checking in, just getting labs. While I was catching up with them Madeleine ran over and got into the chair and told Sheila she was ready to get her blood drawn. Normally she sits on my lap but does not want to be held. Well, now she does it all by herself! Shelia rewarded her with $1.00 and Ben cheered and gave her high 5's. The photo above is from Wed. Thankfully I had my camera handy. You just never know when she is going to surprise us. We had more visits from friends while we were waiting to see the Dr. and that helped pass the time. She was a big girl getting her IV in place and we made it through the solumedrol that day uneventfully. She did get to watch a magic show before bedtime. A wonderful Dallas Police officer comes out and does a fun show for the kids. We have seen him twice and the kids love him. The steroid princess turned in early, right after the show. Our nurse hoped I would keep her up until 11 pm since they wanted her tired for a morning MRI. ha ha ha ha ha. To quote Madeleine "sorry, game closed".
I must admit that 5:00 am came way too early Thursday morning. They wanted her NPO since the plan was to sedate her for the MRI. She understood that when she went to sleep and knew there would be no breakfast and no drinks after 5 am. So, at 5 freaking AM our nurse came in with jello and wanted me to wake her up and get her to eat and then stay awake. Madeleine told me flat out "no, later". We tried at least. Both of us rolled over and went back to sleep until Terry arrived. I understand they want the kids to be sleepy but this kid felt like crap and was not going to go by our plan. Thankfully one of our Child Life Specialists, Amy, came in and asked me about having the MRI done without sedation. Please YES! Madeleine hates being sedated and was thrilled to be able to avoid it. She promised to give it her best shot and that she would not move an inch. Amy called the MRI folks and went to bat for Madeleine and won! No sedation! The girl plays a CD Rom at home that's from Starbright Foundation abd explains all sorts of medical procedures so she knew exactly what was involved. She even argued that she did NOT need to wear a hospital gown! "My pajamas do not have metal, why do I have to change?" She changed into the gown for us and Amy had a girl sized (faux) MRI machine there in the holding room. They MRI'd Baby Elvis and a little bear so that Madeleine could see what it was like to ride into the machine. I am so proud to
report that she came through with flying colors! The ladies in there were all very excited about how still she was. Amy and I stayed in the room with her and it is so loud. I kept expecting her to jump or wiggle but she was a statue. They had her wound in warm blankets and wearing a headset. She had special glasses on so she could watch a video. It only cost me a trip to the gift shop and a Target gift card but it was well worth it. I kept thinking she was sleeping but when they removed her from the machine you could see her beaming smile. I know she was thinking about food and then what I was buying. The best news is that her muscles do look better from her MRI back in March. yay!
Her pulsing was worse though on Thursday and she spent most of the time in bed and eventually fell asleep during it. She has never done that and when she was done and they unhooked her she had a major attack of 'roid rage. She ran off all visitors and then threw Heather out about 8pm. Normally she will snuggle and read or play with Heather but not this time. It was not a pretty sight. Finally I let her get some stuff from the snack machines to make her happy. It's not about eating them, it's about putting in the money, selecting and pushing the letter and number. All this while I am trying to hold her up to reach it. It is amazing how unpleasant this sweet little tyke can get after the medicine. It was even worse on Friday but her mood did get better as she looked forward to getting home that evening. She sat in Child Life and played on the computers with Kristin and that seemed to keep her happy for awhile. We did get her smile when her pump gave us the "10 minute warning". That meant about 10 more minutes of solumedrol and we were done. After that we wait an hour to see what her b/p will be and if she is good we are cut loose. We have been doing this several months now and this was the worst for her. She felt terrible and had awful mood swings. I am used to getting told to leave and then she bursts into tears saying not to leave. However, she usually does not throw out friends that come to play.
She does have an infection and they want to scan her kidneys and bladder after she takes a couple of weeks of Cipro. The scans involve contrast and I am not looking forward to her having to go through that.
whew! That really is the short version. :)
Her face was less red tonight and she was very sweet when I kissed her goodnight.
Thanks to all who have posted in Madeleine's guestbook. She loves it and has me read and reread them to her.
XXOO to all.

Friday, September 10, 2004 8:29 PM CDT

argh!
I just typed a brief summary of the last three days and poof! it's gone. Little Willie had chewed through the cord. So, I will just say that we are home. The tiny girl is tucked into her little castle bed and I am about to be in mine. Willie is already waiting on me there. He and I need to discuss cords and why he will not be chewing them again.
Madeleine had a pretty tough 3 days but she was smiling when Andrew sat her over in her bed. She sighed as she snuggled into her pillows and even told us that she loves us. That is huge since it was just yesterday when she was throwing everyone out of her hospital room.

After we track down her medicine tomorrow I will get on here and do another "brief summary". We left the hospital with a prescription and it's not something usually in stock at any of the pharmacies around here. I have new photos too!

g'night all!

Tuesday, September 7, 2004 12:23 AM CDT

We just returned from the first day of pre/k! She went this morning and had a fantastic time. Her teacher is very cool (in Madeleine's words) and they are going to have an awesome year. Mrs. Klimek said that she spoke to our Child Life specialist, Cinda. She is coming over on the 24th to visit the class! Madeleine is very excited about Cinda making the trip out and getting to meet all her friends. They are going to talk about why Madeleine goes to the hospital about her medical condition. I have been told these school talks are loads of fun and a great experience for all the kids.
Now that she is back home (and back into her pajamas) she is piled in our bed with lunch from Chick Fila. Little Willie was more nervous than me about her not being here this morning. He looked all over for her and was so pathetic. Now he is wrapped up in her quilt beside her on the bed and watching every move she makes.
Her little face is really red and blotchy and more so as she gets fatigued. She is really being a trooper and we know it's not easy. This is the first time she has been 4 weeks between solumedrol pulsings and she has been slipping back more each day. The next three days will not be easy but it will be good to see her back on track then next week.
I am hiding our bags so far because Little Willie gets really stressed when we are away at the hospital. He gets a little nutty and gives Andrew fits. Andrew is the designated poodle sitter when we are there and does a very good job of being Willie's "mommy" while Madeleine is out.

Please don't give William a hard time about the photo. It's one of my very favorites of the two of them and I am sure he will have a fit when he realizes I have put it on here. William is a very good sport to put up with all the stuff Madeleine talks him into! Not only will he play tea party but he can be talked into letting her use his game cube. He only stresses a little when she erases his memory card. Sorry William!

I was just told to say:
Madeleine says she loves her brothers, Little Willie and Hello Kitty very much.

Thanks for checking in!

Monday, September 6, 2004 10:08 PM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----