History

Journal History

Thursday, September 22, 2011 10:00 AM CDT

If you have seen the video on Facebook than you already know some of the miraculous things God has done in our lives. Now once again we are utilizing the strength that can only come from HIM as Maddie undergoes another very risky but imperative surgery. The neurofibroma on her spine has grown and is compressing and doing damage to the spinal cord. She has lost the ability to move her hands and fingers because of it. She tells me she wants to move them but can’t. The video got the attention of a doctor we didn’t even know was out there and HE contacted me offering to help. We met last Friday, and he has set the surgery date as October 7th at Gillette Children’s in St Paul. A little intimidating for me since we have never been a patient there, but God does provide and I have spoken to several other physicians that we do see and they practice there as well. Several of them will be scheduling there time there so we won’t feel so abandoned. God Bless them!!
Once the tumor is removed, the doctor will have to rebuild that part of the spinal column that has been damaged. The entire procedure will take 8 to 10 hours and may have to be continued the next day. I am very optimistic and know that we will be getting the best care possible. I need you all to pray for God to guide the medical team and as always keep Madigan IN HIS sheltering arms.

Tuesday, August 9, 2011 9:21 PM CDT

Click the link below to go to Maddie's facebook site and see the new video - Pat's Faith Story - Westwood Church

Tuesday, August 9, 2011 9:10 PM CDT

Please click the link below to go to Maddie's facebook site and see the new WestWood viedo of Maddie.

Thursday, June 2, 2011 0:30 AM CDT

I'm back! Maddie turned 14 since my last entry, thank you God! She has been doing well except for 2 broken legs in March which we are still trying to understand how that could happen since she was in the hospital. Her recent bone density tests show an improvement since 2007 scan, not really sure how that works, but we are very happy about that. We made it through the winter from hell and excited to finally see that beautiful sun and warm weather.
We had the bathroom remodeled and had an air tub installed. It is awesome. There was not a dry eye in the house as we lowered her in the tub for the first time in over 4 years. I was able to wash her hair there instead of having her lay on the kitchen counter and lean into the kitchen sink. She had the cutest smile on her face as she relaxed for 45 minutes without the vent on!! The water massage eased the muscle spasticity and she woudl have stayed all night if we had let her.
Our family from Amsterdam visited us last month, Ria and the kids stayed with us and it just doesn't get any better than that. We laughed and loved the days away. It ended far to soon, but they will be back too!
Thank you all for continuing to support us, you help us along the journey when the bumps in the road seem almost to hard to get over!

Monday, January 24, 2011 2:51 PM CST

Life Is a Dance, You learn as you go.
Sometimes you lead, Sometimes you follow
Don’t worry about what you don’t know
Life is a Dance you learn as you go.

I bought this music DVD for a $1.00 the other day and these are the words from one of the songs on it. The words hit home at a time I really needed them. Needless to say it was a$1.00 well spent…and one that Obama can’t take away from me.

We have had a wonderful holiday season, first time in 5 years we were not hospitalized for any of the last three holidays. We even had a Christmas tree and baked cookies, it was so much fun! We got all dressed up and made it to Christmas Eve service at our church just like the old days. We had a PJ party on New Year’s Eve. You can check out the photo on Facebook. We used our new XBOX Kinect and connected live with Wyatt and CECE for a Snuggie and gift unwrapping party. We all looked cute in our festive snuggies as we watched each other open our gifts, the next best thing to being together.

Maddie has been doing well, and seems to have gotten a bit of her appetite back. She craves beef roast, and my new crock pot is kept busy providing it for her. We have to very careful, but she thinks it is worth it! She has been wearing her passy valve, which meant she was breathing totally without the aid of the vent and can talk. One week she was on it for a total of 625 minutes without distress. Her voice was loud enough that when she asked me for beef, I could hear her in the other room…which meant I wasn’t moving fast enough! The neurofibroma is growing and is now causing her pain when she moves her head, and we are seeking treatment for that now. We do not know what the next steps will be yet.

Mikaylah and I have been busy too! She is in 10th grade now and works hard to keep her grades up and maintain a sensible social life. I had a great sales year in a terrible economy so that is a very good thing!
I hope all is well with you and yours and may 2011 be even better that 2010 for all of us. Check out the facebook pictures.

Thursday, October 14, 2010 5:40 PM CDT

It was a summer full of activity for the Lang Ladies. Hope Kids is a non-profit organization for critically ill kids that provides upbeat support and hope for the journey families like mine face. The volunteers kept us busy with, movies, concerts, carnivals, plays and sporting events. I was fortunate enough to go to a parents only event at the Target Center and was mesmorized by the melodious music of Carol King and James Taylor. I was a fan before, but have moved them to the top of my list. Get the CD of the Trubadore Tour and you won’t regret it You always walk away from HOPE KIDS events more thankful than the day before. I wish that healthy, negative, selfish, chronic complainers could spend some time amongst these unbelievable kids and their families, maybe then they would realize how blessed they are.

We desparately wanted to take a vacation this summer. We had a hard time making up our mind between Maine and Seattle (Wyatt and CeCe), but the airline was less than helpful as we tired to make plans to fly. The vent is driven by a car battery which supposedly only lasts 6 hours, so we have to carry 2 batteries, the charger, the suction machine, emergency kit, O2 concentrators, back pack and much more and they were less than helpful as we tried to make it all come together. SO, I booked us in a hotel close to home and made it feel like we were really somewhere else. It worked, we had an EVERYBODY”S birthday party and invited several of our friends and pretended we all had a birthday on the same day (Cake and presents for everyone), we had a scavenger hunt around the businesses that we could walk to in the area, we swam, I didn’t cook or work, and it was restful and fun! We also spent the night at a friend’s house overlooking one of the beautiful 10,000 lakes we have here. Food, folks and fun, you can’t get better than that!

The girls are back at school, Maddie is still home schooled and Mikaylah is now in 10th grade. I am still working for GE Lighting, struggling with the impact of our new health care plan. I was the keynote speaker for the third year in a row at the University of MN. School of Medicine for incoming, pre-med students. I added a skit to the speech to illustrate how difficult it is for us, and families like us to travel, and it was very well received! I had it video taped and hope to make a DVD to show other medical professionals/institutions hoping to land something in the field. What will be, will be!

Don’t give up us, we love to hear from you and it helps us each day to know we are loved and thought of. Be sure to check out her Facebook page for video’s, songs, and pictures.

Tuesday, June 1, 2010 8:20 PM CDT

I have been struggling with a lot of things of late and then my Hope News letter came and some one put it all into perspective and I quote.

I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so very bad that I do not think I can take another step. Yet, I continue to wear them.

I get funny insensitive wearing these shoes. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on you can never take them off.

I know that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try to walk in them. Some have learned how to walk in them so they don’t hurt as much. Some have worn the shoes so long that days will go by before they think about how much they really hurt.

No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. A woman of great faith. These shoes have given me the strength to face anything. They have made me who I am.

I am a woman who has a child with MLD. I will forever walk in these shoes.

Maddie is doing well and we have welcomed the warm weather with open arms. We’ve already been to the beach! School will be out in two weeks and we are planning our second garage sale of the summer already. The Lang Bed and Breakfast is open for visitors, ya’ll come now!

Tuesday, March 16, 2010 11:46 AM CDT

I keep reminding myself that when I die, my “in box” won’t be empty, but I can’t convince myself of it. My to do, or in box, is a bottomless pit! I just want a day where no one needs me for anything and there is nothing to do but enjoy life! Feels like a pipe dream!

We did get out of the hospital on January 13th. We came home on a vent. I have to tell it was one of the scariest experiences yet for me and our home care nurses. We took classes, had hands on training and still it was uncomfortable to know that this machine was doing most, not all of the breathing for her and that we were totally responsible for that! I had nursing coverage issues and spent many a night up all night and then heading off to work the next day with no sleep, sometimes for 2 or three days in a row. When I did have coverage I was still very nervous and felt safer to jump up each time the machine went off to make sure all was well. The learning curve has straightened out somewhat, but there still never seems to be enough hours in a day to empty my in box.

We have learned to hook the vent up on the back of her wheel chair, and have made it out for church, a movie or two, and to go shopping at the dollar store so she could spend some of her birthday money. SHE IS 13 TODAY! We celebrated early at Kristina’s Chinese restaurant last week and she had a fabulous time as old friends and new dropped by to wish her well! We celebrate again today and I am so thankful for that opportunity!

Songs Of Love, a nonprofit agency out of NY, that writes songs for critically ill children wrote a beautiful song for her. Kenni her favorite musician and friend then re-recorded it with him playing his saxophone in the background. It is so beautiful as it describes the blessing she is in words and song. I want to put it on her face book site but haven’t figured that one out, so in the mean time if you want to hear it, send me an email and I will send it to you.

I have an idea that may or may not play out, but I am going to try my hardest to make it work. I want to take her to Maine on a little vacation. I am starting to work on the airlines, a place to stay, a nurse, and a hospital back-up plan. She did the happy dance when I told her. Half of the excitement is in the planning…and this is far more important than anything else in my in box!!

Friday, January 8, 2010 5:41 PM CST

We had our second care conference this week to discuss the most recent tests and observations. Most of the same doctors were in the room. There was a consensus not to do the trachael diversion surgery at this time for several reasons. We don’t have a baseline CT scan to determine the amount of/and progressive damage done by aspirations. So we did one yesterday for future comparisons. No one can positively say that this bad spell is a result of progression or the result of the chemo, Botox, and the worst respiratory season in 20 years. So we will wait. The decision was made to prepare for discharge late next week. We will be released on a vent, and we all need more training on the use and care of that new equipment. Our new home vent was brought to the hospital yesterday so we can start to learn and practice. Nurses will be coming here as well as learning once home from our vent vendor. I fired a nurse and one took another job recently so I currently have no nighttime coverage, but that is being worked on. We will monitor vent settings at home and monitor her as normal until we kick this thing. The neurofibromia in her neck will be a watch and see with routine MRI’s to keep appraised of change.

It was suggested that we get back together in a couple months to put a future care plan together, but I am not ready for that. I still believe, “When faced with a challenge, look for a way, not a way out.” So, we will keep working to get her stronger day by day and they can spend their time trying to find a cure. Pray for both.

Wednesday, December 23, 2009 10:58 PM CST

We had our doctor conference on Monday. It was well attended by the physicians that are primarily concerned with the respiratory issue, the MLD doctor, and her primary care peds doc. Wyatt was with me to make sure I didn’t miss anything and for obvious moral support. Here is what we learned about her current condition and the decision we may have to make:
We stopped the cancer drug because it can cause respiratory problems AND it is an immunosuppressant which can deplete her immune system making it easier to catch stuff and harder to get over it. The tumor has grown, but it is still one-third the size it was when they originally removed it 2 years ago. So for now we will do nothing more with that but monitor it.

The right side of her diaphragm seems to work a little less efficiently than it should.

The question of is this MLD progression or a major respiratory problem that she is working hard to get over cannot yet be positively answered. This is the worst respiratory season they have seen in 20 years, with over 50�f the kids hospitalized are here with those problems.

The secretions are thin and clear now which is a great thing, but they are still coming out of her stoma not the trach which means she could be aspirating those if we did not have a cuffed trach in rerouting them to the stoma site. When she aspirates, she can get pneumonia and not be able to fight it.

Her high blood pressure may be the result of the radiation during transplant years ago, and they are now treating as if it were.

SO, the decision to be made is this. Should we do the tracheal diversion and separate the trachea from the windpipe which means she can no longer speak. It is permanent. She could then eat, and swallow with out the possibility of aspirating. She would need a custom trach. We have agreed to wait for 5-6 days of testing to be sure she is healthy enough to endure the surgery (she is currently a ASA4, which is high risk) and also that it is progression and not something that she will work through in a bit. So we wait, and spend the holidays here…been there done that. Surrounded by love is what Christmas is all about isn’t it?

On the website here below note the link to Maddie’s new fan page on FACEBOOK, go there for current pictures of this hospital stay and all the wonderful fans/friends that are loving her through this.

God Bless you everyone for your love and support.

Thursday, December 17, 2009 3:42 PM CST

She had a rough night last night again. She started guppy, or gasping breathing and secretions came out of her stoma around the trach which means if the balloon on the trach was not inflated she could have aspirated. Once I called for help the room filled with all kinds of medical professionals who acted quickly to remove the vent and bag (breathe for her) her. We did another trach change but did not find it to be plugged or her secretions to be too thick. So they quickly started an IV, shut down her normal feeds and changed her back to the hospital size vent that can be set at higher pressures than the home one we were trying here in preparation to go home. In about 2 hours life was back to normal, I believe I have used up about 8 of my 9 lives by now. Of course none of our trauma can go without laughter, as we were settled down to finally sleep, the RT tech came in to do a neb, (all RT folks are dressed in burgundy and Maddie recognizes who they are and we have a rule, all of them must dance or sing for her, because they usually do treatments she doesn’t like and that takes her mind off of it). This young man had not been in our room before so he didn’t know the rule, when I told him what he had to do, he was incredulous considering what we had just been through, but when he looked at Maddie lying exhausted on the bed, eyes closed with her thumb up, he realized she could not be denied! He turned on the Christmas rapping rodent doing the Night Before Christmas (thanks Jona) and began to dance tag team to the beat with the vermin. The docs peaked back in, and then brought the team back in for a laugh!

I went back into the shower with my computer to do some work! (Lights are too bright in her room so I can't work in there)

Care conference is not scheduled yet…

Monday, December 14, 2009 3:57 PM CST

We are now out of PICU and up on the IMC floor, which is the intensive managed care unit. It is now 1 nurse to 2 patients unless other wise directed and they sit outside a window looking in. She is still on the vent and basically it is helping her breath, she is breathing an average now of about 46 breathes a minute on her on. We have other issues to work through as we try to get to the bottom of her recent admissions and respiratory status. Several conferences were held today to determine what to do next. 10 docs representing their specialty and how it does or doesn’t contribute to what’s happening now talked. What I do know is that they have stopped the chemo drug because it can contribute to her respiratory issues as well as it’s an immunosuppressant which makes her very vulnerable to infection. The neurofibroma surgeon was in one meeting and they have now decided that the tumor has grown. The 20mg dose of thalidomide is not the 50mg therapeutic dose they believed they could give her to shrink it because they side affects on the 20mg were making us think twice about going any higher.

She has a major leak of saliva around her trach which means she is aspirating which is never a good thing. ENT doc is part of the conferences to determine what next with that. One suggestion was a tracheal diversion surgerical procedure which would basically divert the trach from the airway, which would stop the aspirations, but she would not be able to talk any more. I am not ready for that. Her trach has a ballooned cuff on it, and I had been advised against that in the past because the inflated balloon cannot stop aspiration entirely. Saliva can slip down around it, and the inflated balloon pushes against the soft wall of the trachea and can cause damage that may or may not be repairable over the long haul. I have no idea what to do and can only tell you that I wish these decisions were not mine.

Surgery for the neurofibromia is also being discussed. But are well aware of the scare we had last year in November when she arrested on the operating table and then did not come out of the anesthesia like a normal patient for days. None of the docs could figure out why, but all were nervous about that and they all have reviewed the file from that as well as the last two times she stopped breathing this last week.

Pray.

Friday, December 11, 2009 0:28 AM CST

Well to say it’s been an eventful week is putting it mildly! I am still in PICU but I am back at some of my old tricks. I squeeze the hands and bat my baby browns at the handsome docs, nurses and RT guys and I fall asleep when I am tired of people messing with me. I have seen a lot of my old pals from all of my frequent stays here and love that they remember me and come to visit. I had to have another bronch today, and let me tell you that is not fun! Everyone standing around the bed talking about what they see inside my lungs and I can’t see a thing. The doc that did it this time said it had a lot of thin secretions in there, but that he expected it to look a lot worse than it did. That’s good, isn’t it? They did a trach culture and will tell us tomorrow what the results were of all of this testing. I am still on the vent and O2 at night and most of the day. They are trying to wean the pressure and peeps every so often during the day, but not at night. They brought in a different vent today and I learned that they would try to put me on that tomorrow because it is like the one I will use at home. My Mom and all of the home nurses will have to learn how to use it before I can go home. Don’t tell her I said this but my Mom is NOT the technology expert in the family, she did learn how to use my bi pap machine faster than her new Blackberry but now she has to start all over and learn how to work the vent. My release date is unknown at this point but it better be before Wyatt and CeCe get here on Tuesday.

I got my hair washed today, and my night nurse is going to braid it while I sleep, but my nails are a mess. I hate it when the polish chips off! The nurse made my Mom take a sleep room tonight right down the hall so she could sleep in a real bed for a change instead of the rocking chair. I didn’t tell my Mom, but it may be because she snores and the nurse needs a break;)!

My Mom is walking on air the last couple days because our friend Kristina stood in line for 5 hours to get her an autographed Sarah Palin book! Sorry Robin. Several of the docs have tried bargaining for it…I wonder if I could use it to get out of this place?! Then tonight after dinner in the family lounge here with her friend Cheryl, she came back to my room and showed me the awesome gift Cheryl and Lifetime Fitness gave us for Christmas…a family membership for 2010. She was crying like a baby, why adults cry when they are happy is beyond me. Thanks Kristina and Cheryl for making my Mom so happy. We are so lucky to have so many wonderful, supportive friends like all of you too!

Tuesday, December 8, 2009 11:04 PM CST

We were working in the basement on Sunday night getting ready for Wyatt and CeCe to come next week,with a fire softly burning,Christmas movies on the TV and the next thing we knew thing Maddie had stopped breathing and Jen, our nurse, and I were calling 911 and working to get control of the situation. Jen was guiding me through as I bagged her and she was hooking up the bipap and O2. We did an emergency trach change in case that was plugged and was preventing her from breathing. She had turned blue and I have never been more scared. She finally started breathing as I bagged her and Jen got all the equipment hooked up. The EMS and a bunch of other folks I’m told arrived and we were quickly loaded into the waiting ambulance. Once in the ER, familiar faces assessed her, started an IV and O2, administered nebs, and quickly got us into the ICU. The pulmonologist bronched her and when he took the trach out that we had just put in it he found it was plugged with super thick secretions. As he was showing the medical team and myself the inside of her lungs, her sats dropped and she arrested again, and it seemed like forever before I saw the numbers go back to normal. My heart was in my throat and I begged in prayer.

She is been in ICU since, on IV antibiotics and nebs, and on a ventilator to help her breathe. They started weaning her pressure on the machine today to see if she can do it by herself during the day, but stay vented at night. They have ordered 2 ventilators for us at home and my nurses and I will have to take a class to learn how to use it before we can go home. In the next couple days, depending on her recovery, they will also see how she manages on an in home vent here before we can go also.

What an amazing daughter she is, I do not have the strength and tenacity that she displays every single day. She has lived through more than anyone I have ever known and continues to smile and squeeze hands to leave Maddie divits. She is a fighter and together we will beat this horrific disease, I believe that. I have asked you to pray in the past, I am begging you now.

Wednesday, November 25, 2009 6:24 PM CST

We tried to celebrate Mikaylah’s 15th birthday in style for the third year in a row but each time we did, Maddie ended up in the hospital. This year was not much different, except that we attempted twice and both times we ended up in the hospital!! We were in the hospital last week, got out for 3 days and ended up right back in on Monday night. We may get out on Thanksgiving day depending on how well she does tonight and if I can get someone to ride home with me as I can not do it by myself due to all of her equipment and special breathing and suctioning needs. The diagnosis is pneumonia, strep, and trach infection. Her lungs sounded like tigers having a catfight inside when we came back on Monday. She sounds much better today, but still has copious, thick secretions in her throat. All of these things going on, but with no fever, make diagnoses more difficult. So, lessons learned, don’t leave hospital to soon and Mikaylah is changing her birthday to June 16th!

We did finally get the wheel chair fitted better to her body on Monday. We have only been trying to get that done for a year! Amazing that the system that is supposed to help its most vulnerable kids does not work properly for the customer it serves! One year after major back surgery she sat in a wheel chair that was so ill fitted for her that it took 4 to 5 pillows to make her comfortable in it. I can hardly wait until the gang on the hill DESTROYS rather than fixes the health care system that they don’t even understand! Their plan wants to tax equipment like wheel chairs, bi and cpap machines, feeding pumps, oxsymeters, suction machines…all of which we use!

We are thankful this holiday season and everyday for the last 10 years for all of you out there, reading this, supporting us, and loving us. Everything you do and have done for us is so greatly appreciated. The calls/texts, the gifts, the food, the prayers, the Alvin walks, the nursing care, your time, your attention, the visits, etc. may seem trivial to you, but to us they are what makes this life line we cling to more like a tug of war with all of you on our end pulling to beat MLD. I couldn’t do this without you…I only hope that one day I can repay you!

One more very important note - THE CAR IS IN THE GARAGE, well if we weren't in the hospital it would be! WE danced in the driveway, drank non alcoholic bubbly and told the whole neighborhood! It's the simple things...

Monday, October 26, 2009 11:03 PM CDT

I feel like I always start my entries with “It’s been a hectic few weeks” or at least something to that affect, but it’s true and to not say it I suppose would be less than honest. But one of my new favorite sayings sums it up much better I think: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” And that my friends we have learned to do very well, and you all have helped hold the umbrella for us!

Respiratory issues persist, so we are on antibiotics both inhalation and oral. Her nebs have increased as well, and we have gone back on the vibrating vest twice a day to help keep her lungs clear. She hates that, I can’t imagine how it must feel with all the rods that are now in her back. I only know how I feel when we have to do it and she cries. I sing and dance, even stood on my head once (what a pretty picture that was) to try to keep her mind off it and to keep my own tears in check. She is also back to the Botox injections to decrease her spastisity and cramping. I learned recently that also adversely affects her respiratory issues and oxygen levels, so it’s a balancing act. She gets stretched and casted weekly as well. Yes, we are still on the chemo drug, which has increased her tremors, and we are trying now to schedule an MRI to see if it’s working or if we need to up the dose. All of that being said… we are dancing in the rain to be sure!

Thanks again to Hope Kids, we have seen movies, kid’s plays, and been on a beautiful fund raising walk. We visited an apple orchard last weekend and have made 10 sour cream apple pies for friends. We made apple sauce and Maddie measured out all of the apples. We even had an in doors snow ball fight in October…UGH!

Mikaylah went to her very first homecoming dance and had a wonderful time. I on the other hand was a nervous wreck. She is growing up so quickly and the world has changed so much that I find myself wishing there were more female role models girls could look up to. Can I keep her home until she's 40?

I am still working in the garage, and I am proud to say we are 90% done. I am hoping by the next snow fall, the car will be safely tucked in the garage where it belongs! But if it is not, we will dance in the snow and make snow angels on the front lawn anyway!

Thursday, September 17, 2009 10:02 PM CDT

Hannah Montana says it better than I ever could…”There’s always going to be another mountain. I’m always going to want to make it move! It’s always going to be an uphill battle…” I have been battle weary of late with little time left in my day to update.

Maddie has had numerous trach infections in the last few weeks and those cause other respiratory issues. Her O2 levels deep at night because she breaths so shallow so we have decided to put try her on the bi-pap machine at night to expand and strengthen her lungs. It was hard to get used to for her but I think she has settled into it the last couple days. They continue to increase the Thalidomide to hopefully destroy the tumor that is growing on her spine. The side effects from that so far have been tremors of her hands and head. We do regular blood draws, and I have to call the manufacturer every 14 days to answer questions about usage and safety of the drug before we can get the next 14 days of the drug. Her eyes continue to plague her as she has no tears what so ever, so they are very dry and easily get matted and infected. We have to lubricate them every hour. Then she developed pink eye this week on top of all that. Despite all of this she smiles everyday and continues to pull pranks on her favorites.

We had a surprise visit from my youngest brother over the labor day weekend and had a great time. He had not yet been here and it was great catching up and hanging out together with the kids. Laughter, good omelets and fantastic music was enjoyed by all.

It’s been a full summer despite all the twists and turns of this crazy illness, but we still managed to attend numerous Hope Kids events, go boating, golf card riding, attended the State Fair and Renaissance Festival, partied with friends around the fire pit, and planted and cared for all of our flowers. We took a very long day trip past Duluth to Two Harbors and enjoyed the beauty that surrounded us there so reminiscent of Maine. The garage clean up was put on hold so we could enjoy the never long enough summer. I will get back to that before the snow flies…unless it happens this month.

School started why to soon and Mikaylah is now a Freshman in a very big high school. Maddie started out home schooled as she was all last year, but I hope to get her in school for 2 days a week, a couple hours a day starting next week. She misses the socialization, and while her friends have not forgotten her, she misses them and the interaction. A nurse has to go with her and she will have a para.

Those who know and love me won’t be surprised that I have attended a couple tea parties and will continue to be vocal about a subject near and dear to my heart. Obama hasn’t answered any of my letters, Secret Service hasn’t contacted me either so I must be ok. I was also the guest speaker again in August at the UOM medical school to the incoming class of doctors, class of 2013. I feel like that is where I can make a difference.

Wednesday, July 22, 2009 9:20 PM CDT

Her precious painted slim little fingers trembled as she tired to get her hands to do what her mind was telling them to do. The tremor in her hands was quite visible as she attempted to put them together in front of her and entwine her fingers. She missed three times, but she managed to connect the fourth time just before Pastor Dave said AMEN. It makes me sad to see how hard she works to do so many things we take for granted! Jen (the nurse) and I didn’t miss the teaching moment, neither did the gentleman across the aisle who reached over and gave her a huge hug with tears running down his face.

The chemo drug Thalomide was approved! We started it last Wednesday under many precautions to keep everyone safe. At this point we have not noticed anything different in her behavior or common functionality. She has her first blood draw and check up on Friday with the specialist and the neurologist. When I let the neurologist know that we were starting the drug, he immediately contacted the specialist to be sure he was kept in the loop, he also arranged this Friday’s joint visit. Once again I am so totally amazed at how devoted her medical team is. We are absolutely in the right place at the right time.

One of our nurses brought her kids over on Sunday for a “Clean out the refrigerator” lunch and water balloon fight, Maddie helped fill and hold the balloons and we managed to make sure a few broke in her lap…it’s only fair as she laughed like a hyena when the kids broke a big one on my head! We had relay races and she and I were a team. She also laughed when I fell down running (kind of) backwards pulling her in her chair! We lost needless to say. We made homemade ice cream and picked raspberries from our very own bushes. A great time was had by all and a super good night’s sleep was enjoyed by yours truly.

The garage is looking mighty fine these days, not done yet of course, but my goal of the car in there for the winter is looking like a reality. I may even have a second garage sale at the end of August. I have moved 4 times during this journey, plus spent almost a year in the Ronald McDonald House, so you may well imagine the surprises I continue to find in boxes.

Thursday, July 9, 2009 9:14 PM CDT

On July 7th we had a 3 hour MRI to look at the neurofibroma in Maddie's neck. They were checking position and growth from previous MRI’s. It is located at the top of her spine and from my perspective looks like a salamander with a big head pushing the spinal fluid sack, distorting it’s circular shape. The body hangs down then along the spinal column. It measured 28 mm in September and is now 31mm. You can feel it a bit when touching her neck behind the jaw line and behind the ear. Even from my view I could see the growth and difference in conjunction with the spinal fluid. At this time surgery is not an option because she is to medically fragile. Drug therapy is the plan of attack and three of the four drug choices and their side effects don’t seem like the right option. The team decided on the thalidomide and I went through the hours of education, reams of paperwork and voice activated surveys which I will have to do every month. We were then turned down for payment by my insurance company because of the off label useage/application. The drug is $4500.00 a month (that may have had alittle to do with the denial too!). At this time they have said they won’t pay… and require MORE paper work and review, so we are in the ardous appeals process now! Forgive my jaded opinion, but if I had no insurance at all I would be better off in this case. I could then app;y for the get it free or trail program. It’s exactly like the Make Home Affordable program proposed by the socialist in the Whitehouse, you can only qualify if you aren’t working and have stopped paying your mortgage payments. The folks that are working and cutting back to make ends meet don’t qualify. Yep, I am angry as it feels like some form of punishment these days to continue working hard to support your family! Insurance companies and the current administration deciding what is best for your child…imagine that! I will continue the fight and won’t take no for answer, but you who know me already knew that didn’t you?! Pray!

I tried calling into the appeals process today but have not heard back from them. I am in constant contact with the doctors and nurse that are involved in the craziness as well.

The side effects of this very powerful drug, are constipation, depression, sleep interruption, tremors and it can not be used if she starts her period for a host of additional side effects, They have never used it in this small a child, or one with MLD so other side effects are obviously unknown.

My friend Keiko has offered to help us try an energy healer and I am in the process of interviewing one. I will go to any lengths to beat this and am lucky to have Keiko's support. Thank you.

Keep the families of two of my dearest friends in your thoughts and prayers this week as they have both lost precious loved ones yesterday. Claudia Ruffing lost her husband and soul mate Jim. Ria Prange lost her niece Mekala after a ferocious battle with Fanconi Anemia, she was only 12. Rob and Ria also lost their precious daughter Robin when we lived together in the Ronald McDonald House.

Saturday, June 20, 2009 11:50 AM CDT

Out of the hospital, back in the hospital, out of the hospital, back in the ER, HOME! The craziness that is our reality continues. The diagnosis that started the decline was the wrong concentration of Baclofen made by the pharmacy, that caused the lethargic condition we were seeing, once hospitalized they discovered a trach infection, and her sodium levels took a very dangerous dive which increased the stay and put us back in PICU on a vent until corrected. The trach infection supposedly couldn’t be treated with drugs because she is allergic to the drug that could have gotten rid of it. SOOOO, we came home. We went back in when in O2 levels kept dropping way below normal and she was holding co2. WE came home. I got strep and had a ridiculous low Hemoglobin count, and then we ended up in ER for the night together as she then was diagnosed with strep. We then learned that CIPRO could be taken for her trach infection, which had decided to stay around as an uninvited guest all this time, AND she could effectively take it to get rid of the strep! So we are home with new meds and nebs fighting this new foe as viciously as all the others.

A much bigger threat I am afraid is that of the neurofibroma. We saw 6 doctors on the 17th, the young, the experienced and the want to be’s to take over the newest foe. The fibro has indeed grown and we all know surgery is not a possibility at this time so, there are 4 drug choices use to treat patients that have a disease known as neurofibromatosis, which Maddie does not have, but since she has ONE the drugs’ could be used OFF LABEL (if you think you want the government involved in your health care, YOU NEED to CALL ME…YOU DO NOT!). Off Label is a fancy term for insurance company will fight and deny coverage because the drug is not currently used for 1 tumor only, but for patients that have many and frequently find the removed ones growing back. The drug choices are all dangerous and all come with side effects that she may not be able to handle. Two are chemo drugs, and the one they believe would be least risky is Thalidomide. I know what you are thinking, especially if you are as old as I am. It is the sleeping aid they gave to pregnant women in the 50’s that caused birth defects. What does that mean for her? I am still learning and trying to process that. We will be doing another MRI post haste, meeting with the only doctor at the UOM certified to administer it immediately and decide further action. The drug is supposed to shrink/stop the growth of the existing growth. I hope that is apart of GOD”S plan.

Monday, June 1, 2009 2:16 AM CDT

We are in the hospital for the first time since her back surgery. We came in on Saturday afternoon because I just couldn't seem to keep her awake. It takes a lot of effort on her part to keep her eyes open or even smile. She has been lethargic and couldn’t even keep her eyes open for the Yanni concert this week. I first suspected another Baclofen overdose because that was what it looked like. So I contacted our pharmacy to double-check her suspension concentration. It is pretty near impossible in this case to know if it was made incorrectly and one can’t do a blood draw to find out, but it was a new pharmacist, we have been off it for 2 days now and she is wider awake, but very stiff because of not having it in her system. We were in ICU, but are in the step down now. They are doing all kinds of tests to rule out everything, which is a good thing since she is still not back to her norm. She doesn’t have RSV, Cdiff, or the flu, urine is good and her lungs looked good on Saturday night. She is having a ton of secretions day and night and they are very thick. So they tested that and it came back positive for a bacterial infection. She is now getting Tobie (antibiotic) nebs for that. She is getting IV fluids as well as her tube feedings to keep her hydrated. Hopefully we will know more in the morning.

She got a good report from the back doctor last week who is really proud of the results of his work. He honestly tells the resident he did not want to do the surgery, but now knows it was the right thing to do. She had new leg braces made last week and had a wheel chair custom seating appointment to so we can better position her in her chair since the surgery.

She sees the Neurofibroma doctor on the 17th and we are concerned about that. The x-ray looks like the legs or nerve endings they weren’t able to remove 2 years ago may have grown. Keep her in your thoughts and prayers.

Tuesday, May 12, 2009 11:58 PM CDT

The meaning of quality of life, like beauty, is in the eyes of the beholder. A blind person cannot see but he finds beauty/value in what he touches or hears. It is not a “one size fits all” when we speak of quality of life, there is no definition that could possibly encompass what it means to everyone. For that reason I do not use my frame of reference to determine the meaning of quality of life for others, and I would hope that others honor me with the same respect.

The age-old question: “Is the class half empty or half full” has more than one answer depending on human perspective so why should quality of life be any different? A very good friend of mine was told when his son was born that he would be a vegetable, his answer was, “What kind”! His vegetable graduated from MIT, has invented a communication device, and is his Dad’s partner in triathlons all over the country! They are living proof and a perfect example of different definitions of quality of life. Is their life different than the one they hoped for…you betcha! Their lemonade is sweet, but they don’t try to sell it to anyone else!

Our life is not as I dreamed it would be, but it is our life and the quality of it is for us to determine. If you peak inside with an open heart and mind I think you would feel the energy that fuels our desire to go on and you would see the beauty of our life through different eyes.

Pat Lang
3/25/09
I was asked recently to define quality of life for grand rounds at the UOM Hospital. Above is my response.
Maddie is requiring less suctioning than before the back surgery because her lungs are not being crushed by the spine. She still has the trach, and as much as I would like to have that removed, it's not time yet. We made it to another Mother's Day and that is perhaps the greatest gift of all.

Sunday, March 15, 2009 8:40 PM CDT

Maddie had Botox injections last month and we went back to the weekly cast on, cast off regiment. It is amazing how that whole treatment works. We were practicing her standing a few minutes daily with help of course which will help the back heal, but a pressure sore on her ankle has made us stop until that heals. Pressure sores, or skin breakdown is very dangerous as it can get infected quickly. We can not put a sock or anything on that foot right now,

She turns 12 tomorrow, it is amazing isn’t it?! We had a birthday party and a slumber party for teachers and friends yesterday. A great time was had by all, and despite eyes that she couldn’t quite keep open, she managed to stay awake almost as long as her guests last night. Her laughter is a little more quiet, but the sound of it has never been sweeter. Thank you to all who came, thank you for all of her fabulous gifts, but most of all, thank you for loving her and never forgetting!

We have been busy the last month with Hope Kids activities; Movies, Kids plays at the Children’s Theater, and Ice Capades. She enjoys them all. It is truly an amazing organization, directed here by Josh Taylor, a selfless man with one goal in mind, to help kids and their parents never lose HOPE.

Does your movie theater have seats for handicapped folks? Ours does, but people that aren’t, handicapped always sit in them! I fight every time I go there because I think it is so insensitive! I have to ask people to move so we can get the wheel chair in and can sit with her. Make a point to notice in your theater, and have the courage to remind the folks fortunate enough to be able to walk that they are taking the seat of someone who can’t!

We had an incident at the Target Center, Disney on Ice, where a family was asked to move down one row (the seats they were in were not designated as handicapped, but were such that the folding chair could be pulled out, the wheel chaired pushed in) so we could push the chair in and they wouldn’t move! Imagine that! I had to unload the chair of her equipment, and try to get her comfortable in a seat and hold her neck up because she couldn’t. The show was so good that we forgot about their insensitivity and at intermission the kind Target person found us other seats.

The bright moment of the day occurred after the show, when a role model Dad, a stranger, reached out and shook her hand and told her how beautiful she was in front of his three children. He then encouraged them to converse with her, ignoring the chair, trach, suction machine and braces…what a beautiful demonstration of kindness for his children to witness. They will grow up to be just like him I’ll bet!

Monday, February 16, 2009 8:31 PM CST

I met a man today that had a beautiful smile that touched me down to my toes! He had a firm hand shake as he balanced himself with his other hand on his cane. He winked at me as he told me how lovely I looked today and then he asked me how he could help me. He was a 92 year old Wal-Mart greeter and despite the idiots in Washington, the horrible economy, he choose to be happy and he made it his mission to share his happiness with all who entered there! I needed that today…I don’t even know why.

Maddie had a neurology appointment on the 9th and Dr. Peter was very impressed with the changes he saw from her comatose state in the hospital in November. He wants a swallow study done and I have tried to schedule for next week. She had botox injections in her legs again acouple weeks ago and they changed he casts again on Wednesday. They are doing this weekly until they get her stretched back to normal. She has a pink cast with red stripes on one leg and a red cast with pink stripes on the other. She got her nails done on Saturday and has purple toenails and red finger nails with hearts. To top off the glam weekend we ended up at Great Clips and both girls got their hair trimmed.
I forgot to mention we enjoyed another Hope Kids event on Saturday morning at the movies. What a fabulous organization and as always a great time was had by all! We went to church on Sunday and Maddie was in her glory as Kenni (her favorite musician) spotted her and came off the stage to tell her how much he missed her and how great she looked. WOW, what a super weekend we had!

It only takes a minute to reach out to someone else and make their day, let’s all do it and pass it forward.

Monday, February 2, 2009 10:10 PM CST

We had our return visit to the back surgeon last week and he was very happy with Maddie’s progress! He also mentioned how scared he was when she desated/tanked on the operating table and the surgical team had to work together to bring her oxygen and blood pressure levels back under control. He said he was to nervous to try to correct more of her curvature in her very fragile, medical condition. The x-rays show a 106 degree curvature before surgery and a 60 degree now. Remarkable! She continues to heal, and must still wear her back brace until further notice. We can live with that. The surgery accomplishes exactly what we had hoped for, time for doctors everywhere that are working to find a cure to do that,and to get her in a more comfortable place as she patiently waits. Thank you again and again for supporting us on our journey.

There is still concern about her neurofibroma which they believe has grown. I got a copy of her MRI done at Children’s Hospital in November and on the 9th we will meet with our new neurologist and he will compare the MRI done there a year or so ago with this recent one to see what is next. Please keep those prayers coming for a positive out come on the 9th.

I went with other parents in similar situations like mine to testify in the MN. House of Representatives about the unfair parental fees charged to families that work and balance the horrific costs of health care for chronic/critically ill children. We are asking to reduce the fees and to hold parents that choose not to work accountable too. No vote was taken, so we can only hope that a difference was made by our presence and testimony and that we can do the same in the Senate next. I was elated to meet families that shared my issues, frustrations, and even anger at a system that is not fair or equal. Different diseases, same love and determination to advocate for their children, it felt good to meet more team members.

Monday, January 5, 2009 10:18 PM CST

Michael Buble sings Feeling Good in a way that takes an ordinary day and makes it a better one if you just actively listen to the words. Even when I am battle weary, I love to turn up the volume and sing like my life depended on it. Would I win a spot on American Idol, NOT…but I sure feel better. Sometimes I listen to it over and over until my kids beg me to go to the next song, sometimes I sing it with tears running down my face, but it always makes me feel better. “It’s a new day, It’s a new dawn. It’s a new life for Maddie”. Always forward never back as my friend Donna says. Well, support team, the surgery was a huge success, and each day she gets stronger. Some days pass and she hasn’t been suctioned all day! AMEN! She sits tall and straight and her voice can be heard through out the house on a good day when she needs something. The outcome was worth the heartache as I sat there in intensive care waiting day after day waiting for her to wake up. God is the captain of our team and the rest of you on this team helped us over the goal line. We have more time for the first string to find a cure, and I believe they will!

Christmas cookies, Christmas tree, Christmas Ornaments, Christmas cards…you have heard of all of these, but have you heard of a Christmas BED? We received the gift of a Hospital Bed for Christmas from The Bill Mccluskey family. They decided to forgo buying gifts for each other and pool their money to buy a bed for Maddie instead! This is the true meaning of Christmas that sometimes gets missed in all of the hustle and bustle of the season. We continue to be blessed and loved by the greatest friends in the world... thank you hardly seems adequate!

When I figure out how to put the girls Christmas picture on the site, you will be amazed at how quickly Mikaylah has grown up and how exquisitely beautiful she is. Despite all she lives with as the sibling of a critically ill child she still manages to shine on the inside and the outside as some of you have already seen. She went from Tomboy to beauty queen in such a short time.

May 2009 be a year of great joy, random acts of kindness for everyone, and the year they find a cure for MLD!

Monday, January 5, 2009 10:17 PM CST

Monday, December 15, 2008 11:37 AM CST

WE are HOME! It's delightful to be home for the holidays and we pray that will remain true! I long for an un- interrupted sleep in a soft bed. My neighbors and friends have taken such good care of Mikaylah and Alvin (and the snow removal)and for that we are always blessed. Cookie decorating is on the agenda this week.

Saturday, December 6, 2008 12:34 AM CST

Each day is better than the next! Her new TLSO (back brace) has been fitted and for the first time yesterday she wore it and sat in the tumble form princess chair for over 2 hours! She looked like a princess with sparkling diamond tattoos on her face, her ears, her feet, and her naval! All that bling and nowhere to go…we are still in intensive care.

She is on the CPAP machine to help her breathe yet, but she spent over an hour on her purple passey valve that allows her to talk. She has to breath differently, so that is scary and hard to get used to again. I have to think of new games to keep her on task and concentrating. Today I made up the Sam game, every time she called Sam’s name loud enough for me to hear, I took a step closer to her bed. Once I reached her bed I would say the magic words and Sam would appear at the window of our room. It worked; well it worked for us, poor Sam was running back and forth between his other patient’s room and our window. It wouldn’t be magic if it was easy right?

I also had a “Hottie” contest where she had to verbally tell us who was the best looking of several male nurses we named. It was hysterical, nurses, PT, OT, and RT gathered to watch and listen. It was a laugh fest as everyone had names they wanted to add to the list. We topped that off with Hattie, the singing Teddy bear that Keiko brought her as the background music for dancing and singing “Girls Just Want To Have Fun”! At one point there were 10 or so participants, and then when someone brought in copies of the words for everyone it got real rowdy! We are just having too much fun, what a change from less than a week ago! AMEN!

Wednesday, December 3, 2008 8:10 PM CST

She hit Dr. Melchert with her silly string within minutes of his arrival, on his day off no less! She had alittle help directing the shot, but it worked all the same. He was elated to see the difference in her movement and her personality. So am I! We do not yet have answers for the whole thing but they are working on it. They did the EEG, the MRI, and they are looking at drug combos and interactions to see if any of that played a part. They did see that the neurofibroma, or the pieces left from last year's surgical removal of the main protion of the tumor, have grown a bit, that is a subject for a different day, since it is not compressing her spinal cord at this time.

Her back incision looks very good, but we don’t have doctor's orders for sitting, back brace or other movement yet. Hopefully we will know that tomorrow. OT and PT have started and speech starts tomorrow. They have turned her feeds on at 30ml and hour and have mixed it with Pedialyte. We were doing formula at 40ml and hour, and water at 25 an hour, so we will work back up to that. Stoma nurse has been in and checked for pressure sores…none. There is an ulcerated, granuloma on her G/J site, but they addressed it today with some new medicine. She still has a central line in her neck for blood draws, potassium and anything else she might need based on drug counts. She has Bowel Movements again, and is peeing just fine. Pain seems to be limited to some movement when we change her position every two hours. She is on Tylenol and Ibuprofen as needed. The doctors continue to be shocked by her pain tolerance level, but the nurses can order pain meds any time and they haven’t seen a need for another stronger. The pain doctor came into with a yellow duck nose on, blowing big bubbles that landed on her head.

Sam the nurse is getting more confident with the nail business and has expressed his artistic spirit with a smiley face, a rainbow, and different colors on each digit. He also put on her several of the cool tattoos I brought in and I think he plans to do the toes over again next. Santa came in today with three of his reindeer, a toy for her and candy for me. Maddie told him she had been good all year and I on the other hand had not! She got a massage today and I got an awesome neck and shoulder rub…fabulous! I did manage to take a shower here, it felt just like home as every two minutes someone knocked on the bathroom door, or my cell phone rang…ugh! When I took one at home on Sunday, Alvin missed me so much, that he stuck his wet nose in the shower door and came in with me…first male I’ve showered with in longer than I care to think about. Alvin is our 125-pound German Shepard by the way.

Sunday, November 30, 2008 10:05 PM CST

What do silly string, John Denver, and Jonna (Maddie’s best friend) have in common? They were all instrumental in the change we saw in Maddie today. Hana and family, Ned and Judy contributed too! Things were virtually the same in the morning, and then I turned on the IPOD to John Denver and started to sing, her eyes focused a little in my direction, and then she laughed when I asked her if I sang “Country Roads" better than he did!! Jonna and her mom came and we dug out the silly string I packed for just such an occasion, and the laughter really began! They shot all the nurses and the RT folks with it. We made her a string bikini and hid some under her armpit for the nurse to find when she took her temperature. She still had no real hand movement, but she was at least with us, and visibly laughing. Her Back surgeon came in and 4 times when he asked her to, she moved her pointer finger for him. He was elated and so were we. He will not make plans for PT/rehab until she is totally back to baseline. She cried when I told her I needed to go take a shower, not sure if she was thankful I was finally going to take one, or if she was really going to miss me. I at least knew she was finally hearing and understanding me. The laughter continued when Hana arrived with a big butterfly balloon.

Our new neurologist came tonight as well. We met him at the UOM when he was doing his residency there. He is brilliant, kind and compassionate. He came today as a friend because he does not have practicing privileges here YET. He believes it is a drug compatibility and metabolizing issue. He immediately said, She is not a typical kid having this surgery, she has a metabolic storeage disease and is known to have problems metabolizing narcotics. He will be doing research on it tomorrow and getting back to us. His smile lit up the room when as he left, she gave his hand a slight squeeze! I think we are on the right road now toward recovery! She rests comfortably now, listening to Keiko Matsui, with a hand on the silly string ready to get Dr. Melchert in the morning.

Thank you again everyone for prayers, calls, food, gifts and well wishes. Keiko, you are an angel for spending the week with us and taking such good care of Mikaylah and AL. Kristina, God sure gave me a gift that day you walked up on my porch several years ago, you just never stop helping us. Great cookies Jane and Kevin. God Bless you all for helping us through this.

Saturday, November 29, 2008 12:41 AM CST

A wee bit of change since yesterday, she reacted to her teeth being brushed and her foot being washed. She grimaced when we rolled her to change her, but she still is not focusing, recognizing us, or moving her hands and arms. Her stomach is real distended and has not gone down much since this morning. The MRI did not show any blood where it wasn’t supposed to be; it did however show that the neurofibroma that they removed 95% of last year in August has resurfaced. They measured the piece they left behind because it was to dangerous to remove last year and saw minimal growth, but noted that it was NOT compressing the spinal cord, that is a great thing! It doesn’t lead us any closer however to what is going on now. The new intensivest was in and admits that they are just trying to rule out stuff now to solve the puzzle. They continue to take meds away to see what if any reaction there will be. Heart rate is down and so is the blood pressure. Hoping to get a neuro consult today or Monday to see if they can solve the mystery.

Finally had a REAL shower this morning in one of the sleep rooms. Mikaylah stayed in one of them last night and I snuck in there early to shower and change. I am surprised people didn’t bang on the wall to make me get out, a hot shower and a cup of chai comfort for the stressed and weary, it’s the simple things!

Friday, November 28, 2008 2:02 PM CST

It was a better night as they backed off of the narcotic pain meds, and have started to wean her off of the breathing vent. Now, we have another major issue. She is still very groggy and can’t seem to focus her eyes in the direction of my voice, but we know she hears us and is even smiling and laughing at my jokes,commentary or singing. What she is not doing however is moving, her arms, hands or fingers! Her leg and toe movement seems to be about the same. For those of you who have been on the receiving end of Maddie divots as Kendra calls them, or her famous pinches know that she really has a grip. We have tried everything today to get her to move her extremities to no avail. The surgeon just rushed over and was even stern with her trying to stress the importance of moving them for him so we would know what to do next, no movement. They just ordered an MRI to see if blood from the back surgery might have gotten into the neck, and to just see what might be going on neurologically. We have to do a trach change here momentarily as the one she has in has metal in it and can not be worn during an MRI…I remembered Nancy.

They started the feeding at noon, 5ml an hour to see how the stomach will react. She is still cathed for urine out put, and that is working well.

So for now we wait and pray…

Thursday, November 27, 2008 0:31 AM CST

It was another very long night that extended into the early afternoon. She baffled everyone when she had some strange reactions to what they now think may have been to blood products. She started with the shivers like you have with a fever, then tightening/tensing in her arms, her stomach was rock solid, and she appeared to be air deprived. Her temperature shot up to 104 degrees in just 20 minutes, her heart rate was 202 at it’s highest, and her blood pressure shot up too. They did an EEG to make sure she wasn’t having a seizure, a chest x-ray to check for pneumonia, and then changed her narcotics, and put her on two antibiotics. Needless to say it was a tense situation as they worked to figure out what was going on. They finally decided it must be a reaction to the blood products they had given her, which she needed because her hemoglobin had dropped to 7 from her baseline of 12.3.

She has been asleep all day, and has not acknowledged anyone. Todd came back today and molded her for a back brace to wear while she heals, and the back surgeon came into discuss the incision and said we must be very careful of the 2 screws he had to use right near her coccyx and pelvic area. She is very boney there and we must watch for protrusion and skin breakdown. His nurse will be back tomorrow to remove the drain that is currently in her back. The surgery was performed from the S1 vertebrae to the T2 on the spine.

We met more members of her pain team, and our sweet stoma nurse who is self-employed, came in just to check Maddie for skin breakdown on her way out of town for the holiday. Dr. Melchert stopped in as well and I was moved to tears when he leaned over close to her face and placed his tie in her hand begging her to pull it like she normally does. When she didn’t respond, he put his finger in her hand and tried talking her into pinching it like she does causing divots that last for a couple days, she just wasn’t awake enough to pull it off…maybe tomorrow.

Tuesday, November 25, 2008 9:35 PM CST

Maddie had a tough night last night as they battled very low blood pressures, high heart rate and dehydration. They did a heart echo last night to make sure that was working properly and it was. She is still on a vent breathing for her, and is on a ton of meds to get things back to normal. She has a central line in her neck for most of her meds and blood draws, and a line in an artery in her hand. She has a Foley to drain the urine off and a drain in her back to allow it to drain as well. She has opened her eyes a little today and some of us swear she has smiled. She is fighting a fever which could be normal after all that her body has been through, but they monitor it very closely with blood tests to make sure she does not have an infection. Her platelet and hemoglobin counts are low also and they are currently giving her IV antibiotics as a prophylactic. Since we are in intensive care we have one on one nursing care and it has been exceptional. Sam, (nurse) was a little nervous when one of her pediatricians informed him they were not correctly following the plan of care for Maddie. He then added, “Didn’t you see that she was supposed to have her nails painted immediately after surgery?” Sam got right on it, now they are purple!

I met with so many doctors and nurses today as explain what was done during the surgery and what to expect these next few days. It is obvious to all that have visited that this medical team is on the top of their game both medically and compassionately. So many of them are intimately involved in her care that it does my heart good to see the love they too, have for her. Dr. Melchert came in to see her today and it is his day off! Todd, her friend and orthotist came to talk to her and though she didn’t try to pinch him as normal we know she knew he was here. A visit by the pain clinic team today is one more reason that I know I made the right decision when I moved here. They are currently the only Pediatric Pain Clinic in the country, and they utilize not only drugs, combinations of drugs, but massage, aroma therapy, OT, PT, specialized nursing and HOME VISITS!
The doctor spent almost an hour listening and learning about her, her needs, expectations, and our home situation. Once he reviews that and studies her disease and history more he will propose a customized plan that can always be tweaked. It is hard to put into words what it feels like when you have trust and confidence in the team that you have entrusted the care of one of your most precious gifts, your child. Thank you all for your continued support.

Monday, November 24, 2008 11:43 PM CST

Dear Maddie's friends and fans,

To you goes the credit and a great big hug!!

If you prayed, visualized, sent well wishes, attended our party, brought food or supported us at the hospital, or wore purple today, Maddie knew you were in her corner, rooting for her. She fought perhaps one of the biggest battles of her life .... and she won today.

Maddie's world-class medical team performed with competence and compassion. The surgery went much better than expected and took less than 5 hours. There was minimal blood loss. The surgeon got the correction to the spine that he expected, and her body is significantly straighter and noticeably taller. There was only one scary moment when there was an airway problem, which was quickly corrected and the surgery proceeded.

She is now resting comfortably in the Pediatric Intensive Care Unit (PICU). Her color is good, her energies are more aligned, and she looks so peaceful. She willl need to lay flat on her back, sedated and on a pain pump, for two days. I will stay here with her until she is ready to come home, probably 5-10 days from now.

Please continue to pray and think positive thoughts for Maddie's speedy recovery and healing over the next two weeks. There will be a special place in heaven for all of you.

Patricia K. Lang

Saturday, November 22, 2008 0:35 AM CST

We had an instant replay of what happened on October 26th on Sunday. This time we were also at a restaurant (the truth comes out, I don’t cook!) we were celebrating Mikaylah’s birthday. Maddie has a bike of pancake and since that went well we tried a tiny bite of ground up sausage. Two minutes after she ate it she starting coughing and we could tell she was trying to clear her airway. We were suctioning and dialing 911 simultaneously. Her O2 sats were in the 60’s when the EMS arrived and we decided to head to the hospital. Road closings and a ton of traffic made the trip a scary one, but once we arrived at the ER things happened very quickly. They admitted her, did a bronchiscope to see what was causing the problem, and sure enough she had aspirated again. I looked through the scope when the doctor said it looked like she swallowed a tooth. He immediately called in the ENT doc and she was off to the OR again to take it out. Once they got in there they discovered it was sausage and not a tooth. They kept us over night and gave her IV antibiotics and steroids nervous that this could derail the surgery on Monday. EKG and pre-op blood work was done as well and the history and physical that was scheduled for Monday got changed until Thursday to give her time to recoup.

She passed the physical on Thursday with flying colors! Her lungs sounded good and she was up to her old tricks, pinching Dr. Melchert. We filled out all the paperwork and learned when to stop feedings and the meds before surgery. I had checked with the Bone Marrow Transplant team about what to do in case she needs blood during the 12-14 hour surgery and learned that she still requires irradiated, leuko reduced blood. On Sunday we have to go to the hospital for the final blood work, type and cross and I must be sure to tell them that. Maddie ordered John Denver, Josh Groban, and Andrea Bocelli to play in the pre-op and post-op room. Dr. Melchert took care of everything, he said he woke up at 2:00 am this morning worried that he had forgotten something, that’s why we love him!

Surgery starts at 7:30 am on Monday. Please wear purple on Monday as that is her favorite color and pray with all your heart and soul. To our old friends and new ones, thank you for signing the guestbook sending us your well wishes and prayers. I will read them all to her in the morning, I was moved to tears and thought it better to wait until then. I humbled by your kindness and feel strengthen by your support. I thank you all from the bottom of my heart.

Sunday, October 26, 2008 11:48 PM CDT

What appears simple never is! The Lang ladies headed out to the mall Saturday before the predicted snowfall and ended up in the hospital again! We hit the food court right off and Maddie ask for Chinese food, one bite and we knew we were in trouble. She started a coughing spell that lasted over an hour with requiring constant suctioning, and her sats were dropping to dangerous levels. A small piece of carrot came out of her trach during suctioning so we thought situation was in control. Not to be…we hooked her up to the emergency O2 tank with us and headed for the car. Since the coughing wouldn’t stop and the sats remained low, we decided to head to the hospital. The O2 tank ran out, so we pulled off and called 911, an ambulance picked us up and headed through heavy traffic and detours to finally arrive at Children’s Hospital. During the bumpy, crazy ride through bumper-to-bumper traffic, I suctioned out another small piece of carrot. Her sats started to come up but were not at base line yet. A team met us at the hospital ER, I can’t tell you how reassuring that is, and lucky for us as well as Dr. Orchard our specialty doc was also on duty. They called in the ENT doc and after mild sedation went done her trach with a light to see if there was anything else blocking it, there was still a piece of carrot lodged there. They quickly got us ready for the OR and rushed her in to remove the carrot. The danger besides inhibiting breathing is that if it goes undetected it can mold and cause serious problems done the road. Yet another harrowing experience that tests the limit of my being. I can’t possibly explain how frightening this is, and often wonder how we manage through it, but we do and learn from each experience. I must say though that I do have less and less patience for the whiners and complainers of this country when I witness all that this under 40 pound little girl lives with each and every day and does it with a smile and a will to live like no other.

Sunday, October 26, 2008 11:48 PM CDT

Monday, October 6, 2008 7:48 PM CDT

David Weatherford said, “When faced with a challenge, look for a way, not a way out.”
I guess that is what I’ve done faced with Maddie’s worsening spinal curvature. After almost all of her doctor’s reports are back in, except for the heart doctor whom we see on November 6th, I have decided to go ahead with the back surgery. Trust me there was no other option for us in my mind and heart. The 12-14 hour surgery is scheduled for November 24th at Children’s Hospital here in Minneapolis. I will be contacting Memorial Blood centers to find out how folks can donate blood for her or in her name which will help us pay for whatever we will need. Please watch the site if you are so inclined to donate. I will keep you posted on the details as they emerge. I ask that you keep us in your thoughts and prayers each and every day. Also, my second family, The Prange’s from Amsterdam need your prayers as well. They lost their daughter Robyn when we lived together in the Ronald McDonald House, and now have a gravely ill young niece with Fanconi Anemia.

The Lang Rover continues to be a source of great fun and entertainment. Wind and Rain don’t keep us out of it, snow might but I doubt it. We have used it to go searching for treasures in the woods…geocaching (goggle it to learn about it) and had a blast. There is not yet room in my garage for the car, but there is room for Lucy the Lang Rover.

The garage is finally looking awesome thanks to so many great friends! My goal is to be unpacked and respectable before the surgery in November. We are well done the path to that goal, now if things would stop breaking around here, we could make better head way.

We had sad news last week after Maddie’s MRI’s. Dr. Charnas, our neurologist, is leaving UOM and heading to Shire In Boston. It makes us very unhappy, as beside Dr. Charlie who was the expert MLD overall doctor, Dr. C is the only neurologist here currently that is an expert on metabolic storage diseases and the effects of MLD in adults and children. It is a neurological disease and despite his sometimes-crazy personality, we respect his expertise and have never doubted his love or care for us. There is tremendous solace in knowing that you are being cared for by the best and brightest and we will sadly miss him. Could we pray that he changes his mind?:)

Monday, October 6, 2008 7:44 PM CDT

Thursday, September 18, 2008 4:06 PM CDT

We heard you! Thank you Andrea! The Lang Rover is the winning name for the new golf cart! We now have a contest kicking off today for teachers only. It’s called the Teacher’s Trip. Who will be the first teacher to read this and make a reservation for a ride on the golf cart with the wild Lang women? Will it be Mr. Shermock, Mrs. Senden, and Mrs. Mobeck, Mrs. Talbert or an unidentified teacher? Who will see this first and who will have the courage to join the adventure on the Lang Rover?

Maddie has had a rough week or so with congestion and copious secretions to be suctioned. No fevers, but as she struggled to get the gunk out of the chest she needed oxygen to maintain normal O2 and heart rates. So we were pretty much on the tank 24/7 for several days, which requires a trip to the doctor’s for x-rays and tests. We have had 4 days now without the O2 and that is always a great thing. Chest is once again clear.

The fabulous news is that the nuclear test went off this time with no problems, and the results are SUPER. No tumors! Thank you for the prayers. We still haven’t figured out the high blood pressures consistently but are working on that.

I called the neurologist about the follow-up MRI for the cervical spine and then wanted one for the brain as it has been awhile since that was done. We can check progression of the disease in the central nervous system that way, even though the bone marrow transplant is supposed to stop it there and it has for us so far. So Monday night she will have that done, and the results will be available then for the back surgeon to see on Thursday. He will take x-rays of her spine with and without the brace and then I am hoping make some kind of decision about the surgery. Maddie’s pediatric doc told me he wanted to speak to me with little ears also before we proceed.

There is a big MLD conference this weekend in Dekalb, IL. Doctors from all over the world will be getting together to talk to families and each other about the race for the cure and new clinical trials. I have opted out, but have requested a DVD of the session for viewing once the conference is complete. A couple of Maddie’s doctors will be presenting and I bet I can get a recap from them next week too. Dr. Giselman from Germany, who has been able to breed mice with MLD will be there and I hope and pray the docs from the UOM can convince him to part with some for testing here. I bet I could!!! Pray for good news to come from this meeting!

Sunday, September 7, 2008 11:14 PM CDT

The nuclear medicine test to determine how the liver and kidney get rid of waste was cancelled because someone forgot to give us the script for the drug we needed to take before and after the test. How that happens is beyond my comprehension! Test has been rescheduled for the 9th and 10th of this month. We see the back surgeon on the 25th unless we can make them understand the urgency and get in sooner. The surgeon has been in touch with the pediatrician and discussed the case so that is a good thing. It will be a dangerous 12-14 hour surgery, but one both Dr. Melchert and I believe is the right thing.

School has started for Mikaylah, but I am holding Maddie out for home schooling until I met with the new teachers involved and we decide how many hours/days she can attend. The social part is so important for her and she will truly miss that interaction if unable to participate.

Did I mention that I was still unpacking? We had a three day garage sale this week and did very well! We made several trips to the Courage Center, Busy Bee, and Goodwill afterwards to pass on some of our treasures. The possibility of getting my car in the garage this winter is looking brighter and brighter.
AMEN!

The Stennis Foundation sponsored an MLD 3 mile walk here in MN. today, thank you to my dear friend Trish Knight. It was well attended and a good time was had by all. GOD held back the rain until the last few walkers made it back to the registration table and then everyone headed for cover promising to do it again next year.

For over a year now I have been pricing golf carts to use on the bike trails all around our neighborhood and beyond. The wheel chair is difficult to push on rugged terrain and the area her is to beautiful to go to waste. I hate to leave Maddie behind when Mikaylah take off on our bikes, and the bike thing in the back is not an option now with her medical needs. I put money back after I finally paid off all of my Ohio Medical bills finally this month and found a deal that was meant to be. The fun we’ve had in two short weeks has made the deal worth it’s weight in gold! We were gone for 4 hours in the woods the first day, nurse, Maddie, Mikaylah and I with all of Maddie’s necessary equipment aboard. WE “princess waved” all of the folks we met on the path and laughed until our sides were aching. At 11:00 pm that same night we took it out again in the pitch black, it was like a Halloween scary ride without the treats. We taped flashlights to the front for headlights and each carried one too! My Mom would have had a fit, but she would have turned her back smiling knowing that the fun and excitement was worth the risk. On a trip to home depot the next day I found 4 round battery operated LED lights for head and tail lights and a fluorescent light to hook under the dashboard so we can see the suction machine in the dark…we heard you up there MOM! Maddie loves it and points to it outside begging to go back out. We have two names picked out…The Mat Mobile or the M and M mobile. What do you think?

Tuesday, August 19, 2008 9:06 PM CDT

There is never a dull moment around here. We were released after a week’s stay with no real diagnosis, but loaded up on antibiotics and more neb treatments. A nutritionist introduced us to an improved, fortified Neocate JR. (formula) and it is working for her very well, so that is a great thing. We are continuing our testing in preparation for the back surgery date to be determined. The back brace has been remade and fits fabulously, but remember it’s a Band-Aid; it won’t stop the progressive curvature. It truly serves the purpose of keeping her up right. We still need to talk to neurology and an endocrinologist because her cresol levels are elevated. Our next appointment is Sept 25th with the back surgeon. The surgery is a 12-hour process, and we will have to have a blood drive before hand in preparation.

A new development today, the urine test done last week shows very elevated levels of something I can’t say or spell. Because of that we have been immediately scheduled for a nuclear medical test that requires an injection of Potassium one day, and some form of x-ray the next. She is also due for an MRI in Spetember following up the surgery last August to remove the tumor. They want to be sure that the tendrills thye had to leave have not grown.

There will be an MLD walk here in MPLS sponsored by the Stennis Foundation and the Myelin project Sept. 7th at 9;00 am. We will be walking around Lake Nokomis. Please join us if you are in the area. We would love to have you.

On a lighter note, we did make it to the Irish Festival this year and had a great time. Jodi, Jeff, Jacob and Mary came for the day and we had our first cook out of the summer on my very own grill. Jeff hung the hammock chair for Maddie and tonight I put her in it and we sang some of our very favorite Schooner Fair Songs (we just found the CD in a box we unpacked last week) as she swayed. Kendra painted a beautiful Chinese saying (in Chinese of course) on our kitchen wall…Love Heals All. I guess that about sums it up!

Friday, August 1, 2008 6:18 PM CDT

Breathing issues, rapid heart rates, and drops in O2 levels took us to the ER over the weekend, and then finally late Monday afternoon we were admitted to try to get to the bottom of things. It’s Friday and we are still here as they continue to investigate. Her trach secretions show nothing growing, but we continue to do suction allot. No virus is evident yet either. She no longer has a fever and blood tests only showed a slightly elevated WBC. Her Albumin levels are kind and so is her hemoglobin. Her sodium was low, but no seems worried about that. We did learn of a new, more nutritious formula made by the company that makes what we already use, Neocate Junior. So we started on that last night.

Once again we had an issue with an overdose of Baclofen. I tell you to remind you how very important it is to be very involved in the care of your loved ones. This is the second time this has happened and I don’t need to tell you how berserk I went! All day she lay pretty much motionless, not responding to my voice, or even able to lift her arms and legs. I could not get a smile or a thumbs up, her eyes looked so bizarre. Finally, it hit me, another Baclofen overdose! Of course, I could not get anyone to feel the angst that I felt immediately, so it seemed like way to long for anyone to come. It all has to do with the concentration of the suspension, which affects the dose. They use a different concentration then we do at home, hence the confusion. I can tell you that they are relooking their process, and in the future I will bring mine from home and they will use it!

We don’t know how long our stay will be; please keep her in your thoughts and prayers.

Friday, July 25, 2008 10:30 AM CDT

Pulling out bushes and replacing them with beautiful flowers, unpacking, garage sale (the first of many) painting, unloading the POD, work, doctor’s appointments, visitors from Ohio…what do these have in common you wonder? They are the reason I haven’t updated in so long! In Minnesota you must take advantage of the warm weather and sunshine, and summer is my all time favorite season.

As I mentioned in June, Maddie’s curvature is not at dangerous levels and something has to be done. The brace has been refit and adjusted several times and we will be starting to wear it again once all that is complete. That does not however stop the progression> so, we met with the back surgeon who now says the less invasive surgery is NOT an option. The surgery now required to correct the issue (curvature of 106 degrees) is about a 12-hour procedure that is hard on even the healthiest individual. So, we are completing tests and visiting other doctors on our team to decide if she is medically healthy enough to perform the surgery and handle the recovery. We met with the kidney doc, the neurologist and the ENT in the last couple weeks. Have also done some blood work and then will get the team together to discuss, sooner rather than later I hope.

She is doing very well with the trach, and the doctor was very impressed last month when he saw how well we have been taking care of it. He was amazed that he had not heard from us since December, which is not always the case he said. I am actually more comfortable with it than I thought I would ever be, Mikaylah and I have even ventured out with her in the car, alone which is NOT advised due to her perhaps needing suction. But Mikaylah and I are quite the team, she sits by her and if she needs suctioning, she hollers and I pull over and do it. It works fine. I bought a converter for the car so we can plug in the suction machine and the oximeter, you can’t keep us down! She does however play with me in church, if she coughs and laughs at the same time she usually requires suction, so she’ll do that to make me have to get up and suction her at the quietest time of the service. She thinks that is so funny!

She is eating a little; she likes all the foods associated with summer too. It’s a bite here and a bite there, but it all counts! She ate a whole meatball, a couple bites of garlic bread, and 4 bites of spaghetti the other night and we did the Food dance to celebrate…don’t ask. She most enjoys eating the peanuts and chocolate off of my ice cream drumstick.

I have been asked to speak at the UOM Medical School Orientation on August 6th and am so excited! Dr. Watson, associate dean says they usually have doctors do it, but felt I could speak to their goal of a more patient centered health care model more realistically. I am on a team with doctors at the UOM to incorporate that model in their learning experience. Maybe one of them will dedicate their life to MLD and find the cure, one never knows.

Friday, July 25, 2008 10:28 AM CDT

Monday, June 23, 2008 6:51 PM CDT

Finally an update! We have been to the pediatrician, the ENT, the dentist, the hip doctor, and this week on the 26th we go to the back doctor! The x-rays show a marked increase in the curvature of her spine, in less than a year it went from a 66-degree curve to a 106-degree curve. The curve compromises her breathing as well as the other organs. It looks so painful and it is hard to get her comfy in her chair and in bed. I look forward to our visit this week with the back doc to determine our next steps. Please us in your thoughts and prayers as always.

The senator did not make it here, but he did send one of his staff, which I thought was good. She actually was a single woman my age that had lost her husband to cancer so she has lived through the horrific affects this has on the affected member of the family as well as the family itself. I have also contacted my local county rep and have yet to hear back. I did RESUBMIT my financial data to show my salary decrease with this new job since I had heard nothing from my first submission and have been waiting for months for parental fee correction. One wonders how a system like this was created in the first place, a system that punishes people for working and helps those that don’t/won’t.

We went through some nursing changes here, so for the month of May I had no weekend night coverage so I wasn’t sleeping. I got spoiled and really had a difficult time adjusting to the schedule. Had to pull off the road a couple times during my workday to take 5! You’d think 5 or 6 Diet Pepsi’s would do the trick, not the case. One night I came home from work, went down to my office to do some paperwork, noticed how inviting the spare bed looked and dived in. Next thing I knew it was 2:00 am and I jumped up to make sure I had nursing coverage, when I saw I did I went back to bed. It was delightful.

Now I am caught up again, planting flowers, grass seed, and I had a garage sale this weekend. Didn’t do as well as I needed to, so we are watching the weather and going to do it again. Hopefully by the time the snow flies I will be able to get my car in the garage where it belongs.

School is out, except for Maddie who has in home summer school. She loves it. She and Mikaylah have been helpful in the yard and they both hate to come in when it’s bedtime. I tore out all of these bushes in the front yard a couple weeks ago because they were ugly and the state bird, mosquito, built homes there, which made it hard on Maddie to sit out. I finally hard to tie a rope around the roots and the bumper of my van and would have hit the gas if my neighbor hadn’t stopped me. He had a better idea…he called a young man he knew to come the next day and remove them for me. Me tying a rope on the GE company van screaming “Git er done” was a sight to behold! Never a dull moment in the Lang household.

Tuesday, May 13, 2008 11:51 PM CDT

Mother’s Days are always special, but this one was extra special! Maddie has recently started using a passy-muir speaking valve on her trach so that she can speak. What is does is restore a more normal closed respiratory system which allows her to create positive airway pressure that facilitates a better swallow and cough. She has to learn to breathe differently than with the trach nose, so they warned it might take some getting used to. The first trail, she wore it for 6 minutes and we were on the phone calling everyone to so “HI”. The therapist was shocked that she did so well, I wasn’t! She breaks the words in to syllables that she can say with the amount of breath she can muster. On Mother’s Day the nurse wheeled Maddie with my breakfast into my room where I was reading, and clear as day she said, “Happy Mother’s Day”! Mikaylah made the hash browns all by herself…it just can’t get any better than this!

Her fans at school have been missing her, so we took her to school yesterday for a visit. If you ever need a lift, that is the place to get it. The unconditional love flows in the halls for her, and your heart feels like it will explode with all the joy of the interactions playing out before you. Teachers, girls and boys alike shower her with love and affection and share with her all that she has missed. She bats her eyelashes at the boys, and gives the loser sign to make them laugh. Compliments about her hair, nails and jewelry make her glow. I wish their parents could see them now!!!

We have numerous doctors and dentist appointments coming up starting tomorrow with the hip doc. We will be seeing the pulmonary, ENT, and back guy between now and the end of June, and also have to work in a dentist appointment. She is still just less than 40 pounds, but is stronger than I have seen her for sometime. I had her lying on the floor in the living room the other day, and she reached over her head and grabbed the bar underneath the wheel chair, almost like she was going to do a pull up. Two seconds late she pulled herself a couple inches forward under the chair…unbelievable!

Have had major home nursing problems, which have left me pretty stressed, not to mention tired. On nights when I don’t have a nurse, I stay up all night and then work the next day. I’m little cranky about that, and then don’t seem to accomplish much around the house when I get home. Needless to say, my garage still has no room for my car!

I went to a town hall meeting where Congressman Jim Ramstad was speaking recently, and spoke up about the health care system and how it negatively impacts the working folks like myself and so many of my friends with critically ill children. I invited him to visit my house and glimpse a day in the life and then go back to Washington and sponsor laws that make a difference in our lives! He is coming here to my house on June 2nd!! I will keep you posted!

Thursday, April 3, 2008 8:36 PM CDT

Maddie's birthday party was a huge success! We went to a local hangout for brunch and 5 of her friends from school joined us. We went early and had a little area in the back pretty much to ourselves, Three middle age men sat at a near by table, and as I busily ran around taking photos of the festivities, I noticed that they were enjoying the party as well.
At one point, one of the men reached out to me and said, ¡§If I close my eyes and just listen to the joyous sounds of little girls having a fantastic time, I would never have imagined that the guest of honor was in a wheel chair unable to speak.¡¨ With tears running down his face he continued, ¡§I hope the beauty of these friendships and the memory of this day remains in their hearts and minds for a life time, it will mine!¡¨ One has to only see the way her friends love and adore her and treat her as if she could walk and talk like them to know the true meaning of unconditional love!

Maddie was very involved in the mischief of the day, dropping things for her friends to pick up, dumping the salt and pepper shakers, tossing her crown, pinching her friend's fingers with her sharp, manicured nails, etc. Beautiful cards and gifts from many class mates were opened with glee and are treasured dearly. It¡¦s hard to believe she is 11 already.

We ventured out to church on Sunday with all of our equipment and the beeper on the pulse sox didn¡¦t beep once during the whole service AND she didn¡¦t need suctioning until I loaded her up in the car afterwards. Mikaylah was elated as it bothers her when attention is drawn to us. The nurse liked our church and is looking forward to doing it again and Maddie¡¦s fan club from church stopped by to tell her how much they missed her. It was a great way to start the day!

I went to see the musical Jersey Boys last weekend, what a treat that was! It is the life story in song, of Frankie Vali and the 4 Seasons don¡¦t miss it when it comes to your area!
It was the first time I had been out with friends in a while and it was so delightful.

All else is well here, still not all unpacked, but most of the painting is done on the first floor now. I had a great sales year on my new job and bought two new handicapped accessible toilets with my commission check and have taken a lot of humorous ¡§crap¡¨
from my friends and neighbors when I proudly show them off ƒº If I could ever figure out how to take the birthday pictures and the new toilet pictures off the camera I would share them with you all! (I¡¦m grateful that I can talk about toilets and not hospitals for a change!!!!

Tuesday, March 11, 2008 10:57 PM CDT

We have set a record, I hesitate to bring it up, but we sure need to celebrate and thank God for it. We have now been out of the hospital for more consecutive days than ever since August 6th!! It’ll be 3 and a half weeks Friday. And the people said, “AMEN”!

We have been back and forth to doctor’s aapointments checking cortisol levels for puffy checks, tube replacement, and neurofibroma check ups. The great news is cortisol levels are normal again, tube is in place and working, and as of today our newest specialist says the tumor legs that were left from August 6th surgery are NOT growing. He believes that they have stayed the same since the MRI in November. He also mentioned an interesting finding that we are the third BMT patient they have seen that has had a neurofibroma in recent months. He will be dissecting it and testing it and also the correlation between transplant and tumor may be looked at. He also mentioned there are some new treatments other than surgery for eliminating the remains of the tumor. We didn’t take that to the next level. He also was blown away by his review of the tumor before removal and the effects it had on her spinal cord. We don’t have to see him again for 6 months.

When we travel to and from anywhere these days it’s a logistical puzzle. Wheel chair, suction machine, 2 bottles of sterile water, one open and ready to go with catheter, pulse sox machine, O2 tank, emergency trach duffle bag, diaper bag, and my purse. Like the song says, “It takes two” at least, one to drive and one to be in the back to suction and monitor sats. Then when we arrive it definitely takes two to lug everything around to get to appointments. We had not ventured out except for Doctor’s appointments until Saturday, a girl must do what a girl must do, and she needed her nails done! So a friend from work came over and Mikaylah and I and Kendra got her to her favorite nail salon the first time since August 6th. I am not sure her had more fun the employees from the salon that have missed her so much or Maddie! She once again is sporting her famous fancy manicure and pedicure.

Last night we ventured out again to watch her best friend receive a community service award for her love and devotion to Maddie! Jona instigated the Christmas party pictured above, the Dance party another time when we were hospitalized and visits regularly to our house, even spending the night and being a devoted, ever vigil friend. She is 10 years old with a heart of gold and truly a role model adults and kids alike can look up too!

Maddie will be 11 on Sunday and we will be partying once again!!!

Monday, February 11, 2008 6:14 PM CST

I promised two of our faithful followers (Jodi Wiggins and Julie Senden) that I would update the site on SUNDAY letting everyone know we were finally out of the hospital. Instead, I sat wrapped in a blanket on the couch, watching old musicals with the kids, and found it very difficult to motivate myself to do anything else…UNTIL, our home care nurse accidently dislodged Maddie’s G/J feeding tube from her stomach! I know I’ve shared all of the horror stories here regarding that tube and the replacement of it, but this one beats them all. There is a reason SUNDAY is capitalized, one, because this has happened before on a Sunday, with a less stressful (not much) outcome, but always because I find it incredibility difficult to believe that outsourced radiologists don’t work on Sunday! So what they tell you when you call for help is, it’s not an emergency, come to the ER, we’ll put an IV in, and put you up for the night so we can replace it in the morning. Never mind the expense to the family, the waste of time and energy, the fact that Maddie is one of the hardest IV sticks they have ever had, never mind that I have a job,etc,etc,etc,

So last night when the radiologist gave our peds doc the standard “admit her until morning”, I blew a gasket as did our doc! So I called another hospital, they were almost as bad, but told me if I came to the ER, when the emergency ( so some things are an emergency?) that was currently being handled by the radiologist we needed, in the IVR room we needed, was done she would do us, the wait they said might be 4 hours. So when I found the portable suction machine we needed to take her in my van, wasn’t sucking properly, I called the ambulance for transport. We have to take the suction machine, the pulse sox machine, the O2 tank, the emergency Trach Bag, Maddie’s Chart, my purse, my caffeinated beverage, etc,etc,etc, every time we go out.

We made it, but the doc left after the emergency procedure was done instead of doing us, so at 4 am with Mikaylah asleep on the floor of the ER, Maddie in the bed, and me on the stool drinking my caffeinated beverage we were told they were going to admit us and replace the tube in the morning…4 am is morning isn’t it??? So up we go to a hospital full of sickness that we don’t need to expose her to all because the radiologist is tried and wants to go home! The topper was when they tried to put us in a room with another sick child, virus, and bacteria sick! I believe the dead were raised at 4 am when I exploded! They moved us!

I did call the CMO of Children’s Hospital to complain, and when he called me back we had a very interesting conversation! I like him a lot, and I even respect the way he listened, empathized and offered solutions, BUT, when he told me how tired and overworked the radiologists were due to a country wide shortage of them my red hair was on fire! I politely stopped him and said, If they don’t like the heat they need to get out of the high priced kitchen that is an option parents of special needs/critically ill kids don’t have! We have jobs outside of the home AND face shortages in more arenas then they could possibly imagine. ETC,ETC, ETC, (Guess what old movie we watched?)

Sunday, January 20, 2008 10:32 PM CST

We were readmitted to the hospital last Wednesday night with increased, very thick secretions. Her O2 levels drop drastically when we turn her and she is in pain, and when these thick secretions block her airway. Turning her as we do every two hours to prevent bed/pressure sores also moves those secretions around and then until we get them out they cause breathing problems.

The tests came back and she has bacterial pneumonia. The bacteria, which I can’t begin to spell or pronounce causes the thick secretions, which causes the pneumonia…UGH!!
So here we sit, all warm and snuggling while the rest of MN. is experiencing a wicked cold spell. Antibiotics, nebs, vibration treatments again are the regiment we are trying to get her well again.

She did eat a bit by mouth this stay so far; grilled cheese and carrots with ranch dip were her favorites. I finally had the courage to change her trach with a nurse to guide me through it. It is a very intimidating process as all must be kept clean and sterile and time is of the essence. The trach must be changed and cleaned every two weeks. Trach cares between changes are done twice daily, cleaning, sterilizing, the site and changing the trach ties. Did I tell you she has an air mattress on top of her bed here and at home now to help her get comfy. I laid with her the other night and it was comfortable as it circulated the air to vary the pressure on her body.

The hospital is full to capacity with doctors working over time to handle all of the respiratory issues. Our favorite Dr. Orchard was there to greet us and give us a hug when we arrived in the ambulance on Wednesday night, and it is a calming feeling seeing him there. Our doctors always take their time with us despite the many demands on their time and attention. God did make them special that is for sure.

Sunday, January 13, 2008 11:40 PM CST

We made it home as scheduled on Thursday! I lead the ambulance to Chaska where we intended to just pull up to her school first before heading home. The exhuberance of her class mates as they stood in the cold waiting for her arrival was asight to behold. It was obvious that her fan club couldn't get a good enough view, so we decided to take her into the school on the stretcher, oxygen tank and all. It was indeed a Kodak moment, as teacher and children alike showered her with love and attention. She was up to her old tricks, squeezing fingers and trying to draw mustaches on the kids with a light up pen someone handed to her. It was another heartfelt memory that I will never forget.

We came home to a house full of nurses and PHS our home care equipment supplier, working to get all the equipment and supplies in order. The airbed and vest machine had arrived. The trach collar machine, pulse sox, suction, oxygen, neb machines were ready and waiting. There is a lot to learn I must tell you. As much as I wanted to come home, there is much to be said about being surrounded by the loving care and knowledge of our medical professionals in the hospital. My home health care agency works well together sharing knowledge and trying to make it all seem like second nature. The emergency kit is packed and the important phone numbers are very visible. Letters have been sent to the pertinent agencies, like the Power Company, police, fire, and EMS so they all understand that we have a critically ill child in the home that is on a trach. Currently she is not on oxygen, but we have it so we can add it whenever needed.

We have had visitors already, Kendra came to help us get organized, Jane and Hana came to help and also give her a manicure. I ran off to check into generators, I haven’t a clue about what is involved with that. I also picked up a battery operated door bell so she could push it to get our attention if she needed us, although no one is out of her room for more than a minute.

Sleep, real pajamas, my own HOT shower, my own soft delightful bed, and my iPod full of tunes, you can’t get better than that! I uncorked the bottle of celebratory wine that my very good friend Amy had delivered to our hospital room the night before we were released, cracked open a good book, and fell asleep before I read the chapter title. It is the small things… Thank you to everyone that loved and supported us through this last 2 months, you have earned your wings.

Friday, January 4, 2008 8:39 PM CST

We are still here! Ok, so I have to share this with you before we talk about Maddie. For those that know me well, you know that I love shoes and that my clothes closet is always full. I suit twice in a week, and have always made the kids change to play clothes as soon as they got home from school. Well, I haven’t been home for awhile so I had one business savvy outfit left in the car to wear, so wear it I did after my vacation ended and I started back to work. I realized when I got in the freezing car off to see my first customer that the black shoes I thought were in there were not, so in I walked to my customer with my purple tennis shoes on. No body noticed! That night back at hotel hospital, I fell asleep in that suit on the couch. When I woke numerous times during the night, I was to lazy to change it. The next morning after a shower, I put the same suit back on with the ever fashionable purple tennis shoes and went to see a different customer. No body noticed…or least no one said anything. So, the moral of that story is; Men don’t notice when you are a fashion loser, or I should save my money and wear my pajamas to work every day.

Today, my home care nurses met at my house to take a class in trach care.
On Monday my nurses will come here to learn how to do a trach change and do one on Maddie with me. On Tuesday we have a care conference scheduled here with all of the doctors and support team to talk about our going home preparations and needs. And on Thursday, God willing, we will be taking an ambulance ride to our fabulous home in Chaska. AMEN!

We are embarking on another leg of the MLD journey,it is not the one we planned on, but it's just a fork in the road. With the proper map,a positive attitude, and an excellent NAVIGATOR we will make our way once again.

Tuesday, January 1, 2008 6:38 PM CST

Happy New Year! I hope 2008 is full of blessings for everyone. I pray for a break through in this nightmare they call MLD.

We are still hospitalized. Maddie is now on Cipro and antibiotic that is Not resistant to the infection in her secretions. We have seen a slight decrease in the number of times we have to suction, but they are still very thick which makes it tough for her to clear them and for us to do the same. We are giving her more free water to be sure she is hydrated properly to give more fluid to the secretions which are glue like masses of protein. They need her to get 1300 ml of liquid per day, so in addition to her feeding pump running 24/7 we’ll have to give her more fluid to get there.

We did have our own little New Year’s Eve party in out room last night. I bought some snacks and we decorated the over the bed table and laid out our small feast. I bought hats, noisemakers and lei’s and we turned on Dick Clark to set the mood. Our nurses and doctors joined on the fun with the hats we had for them and they all visited our room to sample our tasty treats. At midnight, we lined the medicine cups up and filled them with sparkling red grape juice for our New Year’s Eve Toast. For a few brief minutes we all forgot where we were.

I took my trach class all day today which is one of the requirements needed before we can even entertain going home. It is a very intimidating process to take care of and learn the emergency measures one has to do to keep her safe. God needs to be my co-pilot on this leg of our journey because I definitely cannot fly alone. All of my nurses have to take the class as well. The home health equipment company will bring the new machines and take the ones that we won’t need any longer. They will provide the machine that we are using here that keeps the warm mist blowing over here trach tube. I did see the piece that can be added to help her speak, but that is something the doctor will need to write orders for and speech will have to get involved to help her and us use it effectively.

Vacation is over, so I will start back to work full time in the morning, there are advantages to have 35 years with GE, 6 weeks vacation for starters. As always when she is hospitalized I will sleep here and leave from here for work.

Friday, December 28, 2007 7:53 PM CST

I forgot to tell you all some very good news! Maddie finally, after two years of waiting, got a brand new wheel chair built especially for her! It is a metallic turquoise frame with a brilliantly colored rainbow embroidered on the back of the seat cushion. It has a tray, and an adapter for positioning her Molly Merc (computer) for every day use! It tilts, and folds up enough that it can fit in any vehicle! The very best part, her very good friend Hana choose the exact same color for her new chair unbeknownst to either of us. I promise a picture on the front page when she is well enough to sit in it.

The secretions just won’t stop. The sound is like a croupy, bronchitis style wet cough and many times the gunk blows out of the trach tube. I can’t sleep worrying that she will choke if no one suctions her. It is less frequent than then 3-5 minutes of yesterday, but it is at least every 10-15 minutes. The surgeon did the first trach change today and said it looks good, but did agree that the hole was not healing as fast as some kids, but he didn’t seem concerned and said it is different for everyone. Her G/J tube site is very red and sore right now too, hopefully the Stoma nurse will come by tomorrow take care of that. The vibrating vest may be a contributor to that irritation.

We just moved back up to the third floor, so we have a new phone number again, 612-874-4966. I like the third floor rooms for spaciousness and comfort, but one does get spoiled with one to one nursing practically inside your room 24/7. I ask for a baby monitor so they could hear it better, they didn’t run to get one so they might think I am over protective? I need to take a trach class next week and my in home nurses have to do the same before she can come home. They also told me that they would take us home in an ambulance since it is a new trach. That truly works for me. No release date has been discussed yet.

I took Wyatt to the airport this am. That is always a hard thing to do but this time was harder than usual. He was such a huge help to all of us, and is so loved that it breaks our hearts to see him go. I couldn’t be luckier to have a daughter in law so understanding and willing to share. We didn’t tell Maddie, but when he called to say he was home, she heard me talking to him and started to cry. Mikaylah hugged him at the airport and said, “Thank you for playing my Dad and being my brother, I love you.” I am truly blessed.

Tuesday, December 25, 2007 9:27 PM CST

Surgery is over and we are back in the PICU for 3 to 5 days, 612-874-4924. The doc said the surgery went well, and she seemed much better yesterday than today. She has had a lot of secretions coming out of the trach incision as well as the trach opening all day. We are suctioning every three to five minutes and tonight they decided to have it tested for infection. She was removed from the vent yesterday and now has on what they call a vent collar that blows warm moist air on the trach opening. She continues to pull on that tube, so I lay on the bed with her and keep holding her hand to keep it off the tube. Yesterday she asked for food, but after eating a couple bites I saw it come out the trach hole and so we quit. Later we had to call the doctor because the hole seemed to be strecting longer and wider, what a scare that was. They think the vent was pulling on it to hard. This may be a common procedure for ENT doctors, but it is not for Moms! The young doctor seemed to cavalier about it for my taste, wonder how he will feel when he is a parent. It is so hard to watch her cry and not be able to hear it, or watch her pull at it to take it out because it is so uncomfortable looking at me with those eyes begging me to make it better. It is a pain like no other for both of us.

Santa did make it to our room in the middle of the night…we forgot to put out the milk and cookies but I think he understood. Mikaylah called to say he made it to our house as well and she was excited about the gifts that she had to dig out of the closet since we never did get a tree up. Not to worry, just another Christmas unlike any of the previous ones, but full of blessings just the same. I hope yours was too!

Sunday, December 23, 2007 8:49 PM CST

Tomorrow morning at 7:30 am, Maddie will undergo a Tracheostomy to help relieve the upper airway congestion so that she can breathe better. She will now breathe through the trach tube instead of her nose and mouth eliminating the high CO2 levels that have been so dangerous for us in the last few weeks. Since her nose and mouth keep the air moist and warm, she will have to be ventilated to help with this. I am unclear at this point how many hours a day, but I have talked to a parent here that her duaghter is only vented at night, and attends school during the day. We will be eligable for more nursing hours, but that will a struggle with the shortage of home helath care nurses these days. We all will have to learn how to take care of the trach and how to handle emergencies. My understanding is that I may not be able to hear her talk or cry for a while which breaks my heart more than words can express! I miss that sweet little voice so much every day now. Christopher Reeves learned to speak with his, so if Super Man can do it, I am sure Super Girl can too! I do believe, after much deliberation and conversation with all of her docs, that this procedure was the best option I had. We will once again go to the PICU (intensive care) after the surgery, and I have no idea how long we will be hospitalized.

We truly know the “reason for the season” so whether we are here or home it doesn’t matter as long as we can all be together. We have learned to celebrate every day as a holiday and are thankful we are a family. These certainly are the most difficult days of my life, thank you all for taking such good care of us. Pray for her surgical team in the morning and for the speediest of recoveries.

Merry Christmas and God Bless You and Yours from Pat, Maddie, Mikaylah, Wyatt and CeCe.

Friday, December 21, 2007 11:14 PM CST

The new photo is hot off the press. Several of Maddie’s classmates came tonight and showered her with gifts from many of the awesome fifth graders at Chaska Elementary.
How very special this evening was, filled with songs, and gift opening (2 wagon loads to be exact), hugs, and love enough for everyone. They made it easy to forget we were in the hospital. Her friends and classmates know her so well that it was obvious each of the gifts were selected especially for her, purple and pink, angels and teddy bears, diva accessories and nail polish, puzzles and stuffed animals (some that glow in the dark) and a beautiful PURPLE Christmas tree! She laughed and smiled more today than any time since she’s been here. If only we could bottle the love and kindness of all of these kids, their families and the teaching staff at Maddie’s school and use it to wipe out some of the negative things we see and hear about today. Thank you all from the bottom of our hearts for making today a beautiful memory that we can reflect on when we need a lift. That heartfelt thank you goes out to all of our friends for all you do for us. Amy Dance, Kristina Kwan, and Karen Talbert thank you for your part today too!

Maddie’s CO2 levels were elevated more today than yesterday, and we had to suction her more. It appears to be in the upper airway, and it’s so very thick that we have to use a special instrument to get it out. For some reason the gunk collects in the roof of her mouth too, and it’s like rubbery glue when you pull it out. We will for sure be here over the holiday as the docs said this morning that it is to dangerous to go home in her condition during cold and flu season especially. We hope to see the ENT doctor sometime tomorrow to see how he ways in on what we do next. She is still on oxygen and receiving the vest treatments, and cough machine. She did ask for a hot dog in the middle of the night last night, but I couldn’t find one anywhere! I ordered one for her breakfast, and she only ate a tiny bite.
We are still on the stepdown unit, third floor, phone number 612-874-4971.

Wednesday, December 19, 2007 10:19 AM CST

New Room and phone number…Phone 612-874-4971, it is almost like the old one, but different enough to cause confusion. The room is much different, we are in the step down unit from PICU, we have a fold out couch bed, AMEN for that, and much more space. I even have a small frig, so I don’t have to continue to satisfy my Diet Pepsi habit from the vending machine! We are now on the third floor for visitors.

The doctor’s conference has still not been set yet, but individual docs have weighed in and it seems the decision to be made is whether or not to do the tracheotomy. Because of her disease progression, when she catches a virus, pneumonia, bronchitis, she has life threatening complications that healthy kids do not. The complications could also cause irreparable damage. So the decisions to be made are life altering and will be made with the guidance of doctors and God’s loving influence. Keep Maddie and her health care team always in your thoughts and prayers.

Monday, December 17, 2007 9:44 PM CST

They removed the tube late on Sunday and after awhile she started to bring her sats back up. She could not speak until late Monday. They put her back on the Hi flow canula with oxygen to help her lungs get back to breathing on her own. She got better Monday morning and then early afternoon she started to struggle again. The then put her back on the BiPap machine which is more forceful in getting those lungs to work and exhale. She currently has regular blood draws to determine CO2 and oxy levels and is receiving treatments with the vibrating vest, bipap, hi flow canula, and the cough assist machine.

Our neurologist, Dr. Charnas got back and came in on Sunday. He is working with the Dr. Orchard to see what other options we have. They are talking about an EMG to try to figure out if this is the disease progression or not. Problem is they don’t do it here or at the UOM, so they are trying to see what they can do about getting it done here.

Our choices aren’t good ones, so we must continue to pray for healing. I did contact her back doctor today as well to see what his opinion was regarding the back surgery he would have done in September. When he gets back to me I want to know if the surgery he was going to do would help to give that lung room to expand, AND if he thought she was still a candidate for it.

I haven’t been home in a week, so I hope to sneak out tonight as soon as she falls asleep and wash some clothes. Problem is that it’s a 70 mile round trip and I am so nervous about being away. Wyatt is playing duo roles as brother and Dad as I put Mikaylah back in school this week. He is all over those homework assignments.

Saturday, December 15, 2007 1:24 PM CST

The Intensivest (doctor that manages ICU patients) was just in. He just started his tour of duty in ICU for the week and is trying to get up to speed on Maddie. We met today and his goal is the same as ours, to get the team of docs together to decide what is causing the frequent respiratory problems. It is a harder job that it may seem since they are at different hospitals, but I am glad that he is working on it as I have been. His goal is to slow and then stop the feeds 2 hours before they try to take the tube out tomorrow to see if she can breathe on her own. Still waiting to do an EMG, nerve induction study, so they can compare it to ones done previously to see if the disease has progressed.

Dr. Orchard BMT doc met with the Neurosurgeon and discussed the MRI’S to see if the tumor could be the problem, the surgeon thought not. We are also waiting for the neuro consult from Dr. Charnas who has been away, I think returning tonight. I have a call and email into him so I hope we can chat today or tomorrow. I may have to take a quick trip over there to make that happen.

Thank you to everyone who has called, visited, and continues to pray for us. The value of your kindness is immeasurable.

Thursday, December 13, 2007 12:34 AM CST

It was a very “educational” evening! All of Maddie’s teachers, past and present, showed up to decorate her room in the ICU and to make her smile. She was sedated from the MRI, but I know she felt their presence. Mr.Shermock’s endearing voice made her eyes flutter, and when she opened her eyes this morning she immediately saw their creative handiwork. We had other visitors as well; Beth and Liz, Doreen and her boys all stopped in and did wonders for us all! I have said it before but I must say it again, I would not have the strength that I do, if it weren’t for God bringing all of these very special people, Maddie’s Mob into our lives. I hope everyone reading this will think twice when friends or loved ones are ill, and remember that a call, a visit, a note or email, should never end up being a “woulda, shoulda, coulda, because as a recipient of so many of those contacts, I can tell you first hand that it is a priceless blessing to us in more ways than one!

She is still sedated on and off to prevent her from biting the tube. The CO2 levels are down to 48 finally and she is resting much more comfortably. She has two IV’s in, just in case they need to do something quickly. They are still doing vibrating vest treatments and suctioning. They have diagnosed bronchitis in the one lung. I watched the bronch done yesterday at her bedside on camera so I could better understand what it looked like inside those little lungs. The chest x-ray looks much better, but it is very obvious the impact the scoliosis has on her lungs.

Both teams of doctors have the copies of all the MRI’S done in 2007 so they can look at the tumor and share their opinion of its role if any in the breathing problems. The meeting of the minds has not yet been scheduled.

Wednesday, December 12, 2007 3:30 PM CST

The bipap machine has not been as effective as they had hoped. Her CO2 levels are still around 68; base is 35 to 45 so the decision was made to insert a breathing tube. Much discussion between all doctors at the UOM Fairview, and the doctors here regarding next steps. I am currently trying to get copies of all the recent MRI’s for them to view here as the thought has occurred that if the tumor left behind from August is growing, and they believe it is, could that be the underlying cause. At 3:00 today they placed the tube and did a bronchoscope to suction her lungs a bit. They were pleasantly surprised at the low amount of crud they found in her lungs. That is a positive and negative finding, so if the crud isn’t the issue causing the breathing problem,what is? She will have an MRI here at 4:00 and hopefully we’ll have the films from the UOM so that we can see if what is left of the tumor is causing the problem.

Until then we sit tight and pray.

Tuesday, December 11, 2007 3:22 AM CST

We left the hospital late Saturday afternoon on oxygen. When we got home our Pediatric Home care equipment supplier was there to teach me about the new machines we would be using. The oxygen concentrator, the MR850, a Cpap hi flow nasal cannula to help her lungs and a cough assist to help force the cough and get rid of the junk in her lungs. All necessary to help strengthen her lungs, but overwhelming to say the least. Sunday am her blood pressure and her heart rate started to climb. She had very labored breathing, so after conversations with the ER we hooked up her oxygen tank and Wyatt and I headed back to the hospital. Things got worse as we drove like a bat out of hell to get there, Wyatt holding her in the back seat monitoring oxygen levels.

We were immediately admitted to Peds ICU in worse condition than we left on Saturday.
We are now on a bipap to try to help her get the CO2 out. Her CO2 levels were elevated to 120, normal is 35-45. Her little lungs are just to weak to move air it on their own. She hates the mask but again she needs it. If she only knew that I hate it worse than she does, no pain is greater than a mother’s when her child is in distress.

As of 6pm tonight her CO2 levels were at 58, much better but still high. What to do next is being discussed. Please pray harder than ever before.

She had a very restless night as she worked so hard to get the mask off. I laid beside her holding her hand away from it all night. This morning Kenni Holman her musician friend from church and his son came and played for and entertained her, finally she relaxed and with Wyatt in bed beside her she slept peacefully for 4 hours.

Tuesday, December 4, 2007 5:10 PM CST

I wish that I did not have to start this page, “We are in the hospital again”, but I am afraid I do. We have been in since we were ambulanced last Thursday. Wednesday night she was struggling to breathe evenly and had crackles when I listened in her chest. She actually stopped breathing for a second like a child does when they hold their breath and cry. We were trying the Bi pap machine like many of you might have if you have sleep apnea, but it only acerbated the condition because she was so afraid of the mask. I don’t know what is worse the look in her eyes as she struggles to slow down her mouth breathing and catch a breath or the panic when the mask is on. Her sats went way down and into the hospital we came. Her co2 level has improved now from 69 to 53, but she should be down around 40 something. They have her on a new machine, an MR850, a high flow nasal canula, and that is helping her a lot. The canula is less obtrusive, and she actually leaves it alone on her face. They regulate the volumes as directed by her needs.
She was very weak and lethargic but had no fever. She still has no fever and today she was back at trying to leave nail imprints on everyone’s hands…those of you that have been on the receiving end of that, know what I mean! If she keeps improving we will get out on Thursday or Friday. An MR850 has been ordered for us to use at home, so we will be trained on that this week too!

Wyatt and CeCe will be coming Thursday for two weeks…that will be the best medicine in the world…for all of us!

Monday, November 5, 2007 8:08 PM CST

In the hospital, out of the hospital has been our life since her spine surgery to remove a tumor August 6th. Respiratory problems and GI issues have been the crux of it all. The G/J tube had to be replaced 5 times since Aug 6t, three times due to faulty manufactured feeding bags when the nozzle breaks off in the tube and then we can't utilize it. Replacing the tube requires a hospital trip and a stay if it’s on the weekend when no doc is there to replace it. UGH! Fairview Home Infusion is looking into the issue and found we aren’t the only ones who have had problems, so if any families that read this and have had similar issues with Zevex bags please contact me ASAP.

Thanks to Amy Dance and friends from the First United Methodist Church in my hometown, I was able to attend the MLD conference in Boston a couple weeks ago. I could not have afforded to go if the afore mentioned hadn’t helped me. It was so worth the trip for so many reasons: I got to meet numerous doctors from all over the country that are working in various ways to eradicate MLD! It is such a wonderful feeling, and actually wonderful doesn’t adequately describe the feeling, of being able to hear the progress and work being done, and then be able to talk with them one to one instead of being at a 30 minute office visit. The bitter sweet reunion with friends we have meet along the way that share a common bond, and then meeting new families who have just started the journey is also a blessing. Exchanging treatment ideas, gaining strength from each other’s little victories helped me feel rejuvenated by conference end. I would be remiss if I didn’t tell you that dinner and an overnight with an old friend, Claudia Ruffing gave me energy as well as we talked and laughed for hours. I must also confess that I over slept one morning and it was fantastic!

New treatments are on the horizon, none yet that will benefit transplanted kids like Maddie, but in Amsterdam, Germany, Italy, Copenhagen and the US, they have not forgotten this orphan disease and for that I am grateful. Google MLD if you are so inclined, and see for yourself all of the work being done and the trials going on. I beg you to continue your prayers for a cure as these dedicated doctors forge on.

Botox and casts again last week. Her hips are out of the socket more that 6 months ago, one more than the other, but nothing to be done at this time. The awesome news is that when we visited our favorite neurologist, Dr. Charnas, he was shocked and amazed to see that she had reflexes in her arms and that her tremors were no longer visible He asked me when I thought that came back, I had no idea and he had no explanation for why, but we both were elated. Her neck continues to gain strength and it is remarkable how she moves it now and even pulls her self up. One of my newer nurses just said tonight that she is much stronger, and moving better than when she first started with us.

One last fabulous thing, after 2 years at trying to get a wheel chair customized to fit her it looks like it finally might happen! She was measured for it, picked a color, and it was ordered last week. Now we wait while the insurance company and the state assistance fight over who should pay for her “LEGS”! Ridiculous isn’t it?! Just another day in the life…

Monday, September 24, 2007 2:13 PM CDT

We are out of the hospital again as of Saturday. We ran to the ER on Tuesday because the balloon that keeps her G/J in place in her stomach deflated and pulled out of the stoma (the hole in her tummy). After fighting with ER (to prevent unnecessary ER charges) to have us just pass through to the Doc in radiology for replacement of the tube, I managed to make that happen with help from Dr. Melchert. We were back home later that night. She made it to school this week and was welcomed back with very enthusiastic open arms. I swear they need to bottle that as medicine…it’s effective and a lot cheaper!

Speaking of human medicine…Friday night, two beautiful little friends and one of their Mom’s came to visit Maddie in the hospital. They showed up wearing bright, sparkling blue masks and brought one for Maddie. They carried musical balloons playing don’t worry be happy. They proceeded to dance, sing and giggle with her until way past bedtime! Maddie was laughing so hard and loud that nurses from all over the floor were coming in her room to join the party. It truly was a blessing, and greatly appreciated! You would never have known that we were in a hospital, OR that Maddie isn’t a healthy little girl just like they are. They were in and out of the bed with her, playing games and coloring on her pillowcase for memories more precious that one can imagine. Maybe kids should run the world?!

We have a new address as most of you know: 539 Westwood Ave. Chaska, MN. 55318.
Phone numbers remain the same, but Comcast can’t seem to get them working on a regular basis.

Maddie has more tests planned for next week to get to the bottom of the respiratory issues. The consensus is that it is a result of her intubations from the August surgery to remove the tumor. Perhaps stress on the airway and some other thing that can be a result of that. They say that just takes time to heal. I’ll have more details after the test next week.

Friday, September 14, 2007 4:06 PM CDT

We continue to unpack, get organized, paint and try to find missing items. The major missing thing right now is Mikaylah’s iPod. I bought it for her as an early birthday present, so I told her we might be lucky and find it on her real birthday, November 16th!

Maddie continues to have respiratory problems. We have been called the EMS to the house once, been in the ER twice and have been hospitalized three times since my last posting. We were admitted most recently again yesterday. Dr. Melchert has had GI, Pulmonary, Stoma Site Nurse, and ENT come in to help figure this out. I worried about the ductwork at the house since I noticed it was very dusty. So I did have that all blown out this week, and was told by the professionals that it was the worst accumulation he had ever seen, and that it was definitely a fire hazard! I have never done that before, so lesson learned by me, please take advantage of what I learned and get it done. He said the dryer was the worst, also had an issue with the chimney that he fixed. Oh the joys of home ownership and moving! The roof needs replaced too…but insurance is going to handle that. Despite all the craziness, it feels like home and was the right thing to do.

They ran allergy tests on Maddie, checked for RSV and CDIF, and both are negative. I have discussed formula change with dietician and hope that we can do that. The Peptimin JR 1.5 is not as soluble and as easily digestible as the Neocate. I have asked for a way to beef up the calories on that. The super news is that she is eating very well since she is on prednisone again. Carrots and dip and spaghetti and meatballs are her favorites these days.

Thursday, September 6, 2007 1:05 PM CDT

On August 22nd as my friends and neighbors were working feverishly (key word) to get the remaining stuff out of the old house and into the new, Maddie spiked a fever and developed major breathing problems and we were rushed to the hospital. We were in for a few days as they tried to figure out the culprit, to no real avail.

I closed on both hospitals without brushing my hair or teeth and we have now officially moved! We can’t find anything, but the house is super and satisfies all of our needs, even Alvin. My goal is opening at least 10 boxes daily so that when the snow flies we can finally get the van in the garage!! Kendra, a friend from work, offered her painting services and I took her up on it. She picked the colors and I got the paint accordingly. Maddie’s room has 2 vibrant purple walls, a lime green one and one with strips in those two colors and aqua. Mikaylah has 3 walls in a beautiful gray with one very red wall…go Buckeyes. The red wall has a Japanese cheery blossom branch sketched on it with the Japanese words live free beside it. At the opposite end, Mikaylah is deciding on the Chinese words she will print. It to is delightful! My room is passionate, royal purple…”When I get old I shall sleep in purple”

Maddie was measured and molded for her new back brace before we left the hospital after her surgery, but last week when we went back to have it fitted, Todd said her curvature had changed so much, that this brace really wouldn’t work. Great news! So he re molded and measured and the new one is ready now to be fitted this Friday.

Breathing problems again this week on Monday night as we eagerly organized school supplies and dress for the first day on Tuesday. So off we went again to the ER for admission once again to the hospital. They are testing for several things, including allergies to try to determine what has set this respiratory thing off after over a year of no hospitalizations. Needless to say she has lost a lot of weight in the last month. She only weighs 31 pounds. So we are running the pump and new formula with more calories 24/7. They are doing nebs and BD’S every 2 hours, running antibiotics and steroids IV as well. I hope to get test results on several of the tests they did yesterday.

Thursday, September 6, 2007 1:00 PM CDT

Wednesday, August 15, 2007 11:36 PM CDT

Home at last! They released us Monday late afternoon, but Maddie¡¦s favorite brace guy came over to the hospital and molded her for a new support back brace so we wouldn¡¦t have to come back to be fitted. We are actually swinging in the dark, because the back doc and the neurosurgeon believe the spine will expand and straighten, but until then we need something to keep her up right and contorted to the detriment of the lungs.

She still is in a lot of pain, especially when she is moved. She has a hard time getting ¡§comfy¡¨ whether it¡¦s during the day sitting on the bed or at night trying to get in a comfortable position to sleep. I did buy her a toddler car seat that I sit on the bed that has side and neck supports, and with an additional pillow to raise the hip a bit to make her sit in it more square, that seems to work. We have to see the docs again in two weeks so I will keep you posted as to her progress. We are ALL glad to be home again, none of us more than poor Alvin! He never knew when or who was going to come over to let him out and feed him. He truly is the most patient man I knowƒº!

Our house finally sold, so I bought the rambler that I had my heart set on. It has three bedrooms on the first floor, a sun porch where we can watch the wild life in the wet lands that backs up to my back yard, and a nice office in the basement for me. The yard is huge for Al to play in once again, and he can do his business in the wetlands so I won¡¦t have to do the late night and early morning drives to take him out! A very good friend of mine has decided on some vibrant, cutting edge colors for our living spaces and we are all anxious to make it ours. We have to be packed and out of here by closing on 8-23¡Kyikes! When will I ever sleep, it¡¦s over rated right?

Thank you all again, for your prayers, blessings and words of encouragement, it gives me the strength to persevere. It was perhaps one of the most frightening side trips on this journey to date; we couldn¡¦t have made it without HIM, and all of you! God Bless You Again and Again and Again!

Sunday, August 12, 2007 3:39 PM CDT

WE were released on Friday night, just in time to attend the long awaitd Josh Grobin concert, thanks to Donna Nadeau and Dennis Douda. The first band was almost over when she started gagging and having difficulty moving air through her lungs. I took her out to the EMT's on site and we vented the tube and got things back in control. They then found us a special room to watch Josh and they made rounds every half hour to check on us. On the way home panic set in when she couldn't catch a breath and we had to stop and call an ambulance to get us the rest of the way to the hospital. We were admitted then to ICU once again early Saturday am and stayed there until yesterday afternnon when they moved us to general peds area. She had blood coming from her G/J tube as well which is not normal. After xrays they found a kink in that line and believe it was pushing against the stomach wall causing the bleeding and the choking. Today, Sunday, they replaced that and we will try formula through it overnight. Pray that we can get out tomorrow.

Thursday, August 9, 2007 9:44 PM CDT

We are living proof in the power of prayer! At 3:00am this morning, as I lay in bed with Maddie, I could tell the fever had disiapted, the nurse confirmed it a few minutes later. By 4;30, Maddie was responding to commands and talking to the me and the nurses. At 5:45, she was a bit more animated and responding to all of the commnads of the new young, neuro resident. He was so excited to see the change in her that he ran out to the nurses station to tell all the nurses that she was back. She continue to show her stuff as each of the involved medical teams visited through out the day, and let Dr. Charnas have it with a 60cc syringe of water (she had help:).
If the fever continued to go yup last night they had planned to do a lumbar puncture because they thought it might be meningitius, but Charnas and I said no! Thank you tema for all of the prayers, we know who is our leader!
The spine continues to expand and we are praying it will come back enought to eliminate the need for the lumbar surgery. More data is needed for alot of things, but we REFUSE TO GIVE UP.

Wednesday, August 8, 2007 7:47 PM CDT

Maddie is still not herself. s
She is mostly unresponsive and lethargic. Her eyes do not focus and she appears to be drunk. We have had an array of docs in and out of the room today both in ICU and now back on 5B. Ever faithful Dr. Charnas has been around 4 times trying to decide what is going on. Finally at about 5:30 he got what he called "purposeful reaction" to his poking and proding and he said, I am not as worried about her condition as I was when I saw her this morning!" That is great news! He got her to push back and cry which was more than we had seen all day! Dr. Haines the surgeon just left me and said, "The scan looks better than I ever expected! The spinal cord has expanded, which means pulled out of some of the curvature which is a super thing. There are pockets of air in the brain which is normal after surgery like this which could contribute to this condition we see now, AND it is not unusual for a person after this surgery to have a very good day post op, then a not so good 2nd day, and then an awful third day before coming out of it!" All of this is marvelous news, but still it's hard to see her this way and feel so useless. Keep the prayer chains working. She is in his hands! God Bless you all.

Wednesday, August 8, 2007 10:18 AM CDT

Monday was a very long day. We went into surgery at 11:00, and due to positioning issues for the procedure even get started until 1:30. Surgery was over by 4:30 and were were taken from recovery to ICU. Dr. Haines said he got the tumor but not hte tenticles coming from it. Removal of those would depend on what the tumor tested as, results are due in acouple days. He also said it was attached to a harmless nerve, a sensory nerve in the neck which proably would cause no problems later on. BMT team got half of the tumor for testing and the other half went to regular pathology. She transferred out of ICU yesterday and was in good spirits when Dr. Orchard visited. She showed off ehr her fresh manicure and pedicure and squeezed his hand making him cry! Later in the evening she changed! She became lethargic, unresponsive, and needed oxygen. Her temp went to 103 and they rushed in to MRI, and CAT scan. They moved us back to ICU in the middle of the night as they worked to figure out what went wrong. She is receiving high doses of Antibiotics as they look for the culprit. Dr. Steiner and I wonder if it could be another Baclofen over dose. Finally she regained normal responsiveness to pain, and stimulation about 5:30 this am. We are currently waiting for docs rounds to see what else may have happened. It was one of the scariest times on this journey. Thank you for the prayers, keep them coming.

Thursday, August 2, 2007 7:41 PM CDT

We had another MRI using contrast on Tuesday and the pictures were much clearer than the ones taken last week. We then met with the neurosurgeon to discuss the results. It is indeed a tumor but they can’t be sure until they go in exactly what kind. It is at the back of the neck putting extreme pressure on the spinal cord which is causing the pain as well as the rapid curvature progression. It has tentacles coming from it which may make it hard to get all of it, they won’t know until they go in for sure. They now think it is a neurofibroma. Dr. Haines met with her metabolic docs and they talked to Dr. Melchert her pediatrician and the decision was made to go in as soon as possible to remove it. Dr. Haines believes at this point he can remove 60 to 70% of it. She will need reconstructive surgery once recovered from this for the neck now, as well as the lumbar region (this WAS previously scheduled for 8-29). She will probably have to wear a neck brace afterwards for awhile. This will also alter the specs for the current back brace which will have to be refit depending on the bounce back of the spine.

The surgery is scheduled for this Monday 8-6-07 at Fairview University Hospital at 10:50.
No matter where you are or what you are doing at that time, please stop and pray for her!
She has fought the MLD battle so valiantly; we will not be deterred by this diversion.

Wednesday, August 1, 2007 7:48 AM CDT

Maddie has had chronic neck pain and a stiff neck for a couple months now. I mentioned it in one or more of my updates. Despite everything we were doing it wasn’t getting better. Last Thursday we had an MRI to check it out further and they found a tumor of some sort. We repeated the MRI yesterday, and the mass that they thought was a meningeoma does not now appear to be that. It is a tumor in the neck straight back from the mouth, pushing on the spinal cord which they believe must be causing some of her spine problem. The neurosurgeon thinks it is one of three kinds of tumors of which I truly can’t quite remember let alone spell. It is also bigger than they thought previously with tendrils coming out from it. It is very serious and they are putting together a team of doctors today to decide how quickly they can do surgery and whom should be in the room. One of the issues is that the placement of the tumor may make it hard to intebate if necessary during surgery. Drs Orchard, Charnas, Toler, Melchert, and Haines will meet today to discuss and then conference me in.

Please pray more than normal.

Sunday, July 22, 2007 11:13 PM CDT

WOW! A lot has happened since my last update. No, my house still has not sold, BUT, Saint Joseph has been properly buried in my front yard, so keep your prayers coming as well. There are currently 7.5 houses on the market here for every buyer; the good news is that Money magazine just listed Chaska, MN. as the 8th best place in the United States to raise a family! None of the other places we’ve lived made the cut, so we must be doing something right.

I made another big decision this month; I have elected to take a position with GE Lighting, the GE division I grew up in. I have 35 years with GE, but the Fleet business that I moved into when I moved to MN., does not have the same retirement benefits (medical retiree) as our core businesses, one of them being Lighting. I am not ready to retire by any stretch of the imagination, but recent changes at the Fleet business make this the right time I believe to go back. My benefits are grandfathered because of my 30 years in core businesses. I also will be moving into a sales roll and will be able to office out of my home. The state of MN.will be my territory. I hope this will help to make life a little less stressful, pray for that to happen too! The base pay is less, but I intend to sell lightbulbs like a wild woman and earn more commission than they ever thought possible. I will also have a company car, (I am negotiating for a van) and with gas prices the way they are that will help as well. My first day is tomorrow.

My son and his wife, and my close friends from Amsterdam spent last week with us and as always the time together was way to short! The friendship was formed as a result of our living together in the Ronald McDonald house, and the bond we share can never be broken by distance. We get together every year and when our time together is over it always feels like a piece of my heart goes with them all. As I have mentioned so many times before, it is also such a joy to watch my three kids together, and that pleasure I wish I could experience 365 days a year! Wyatt’s wife, CECE, is also a sweetheart who quickly became a big sister to both of the girls and pitches in to help all the time. I wish they all could move here!

Maddie’s back continues to be a huge problem. We have seen yet another specialist. Her curvature without the brace is now 90% which is causing her many problems. She now has a problem because of that with her neck called tortacalus (doubt if I spelled that correctly) and is pain most every day. She has had a massage, and seen a chiropractor for help. Her twisted little body does not fit properly in her brace which cause pain points as well, but to not wear it means that she can’t sit up. It also causes breathing problems. We saw the new doc on June 28th, and despite the fact that I put the x-rays in the hands of his nurse, she lost them and we have been waiting patiently to hear what our next options are. Finally when I called last week to check on the situation they admitted nothing had been done since the x-rays were lost. Imagine how that phone call went…! I met with them on Friday; they viewed the new set of films and will now consult with several of our other doctors to see from a medical perspective if surgery is an option. The back doctor can perform the surgery and he believes it will work if the other docs think she is healthy enough. He has promised me the negligent nurse will not be in the operating room, Dr. Peters was a reference for him, and I believe he can do it. We are always in HIS hands…

Friday, June 8, 2007 11:43 AM CDT

I am not invincible! You heard it here first. I think I realize that more today than yesterday. Last Friday night found us in our home away from home, the ER at Children’s hospital. Breathing issues, crackles in her lung, and a fever, made me worry about the start of pneumonia. By 2:00 am they decided to keep her, so the Lang ladies headed upstairs to our hospital room with a view. Mikaylah on her fold out chair, and me on the padded window seat, the three of settled in for what was left of the night, or day. I woke up several hours later, stood up, and immediately fell down with a massive headache, and blurry vision. I was so sick to my stomach that I was not sure I could make it to the restroom, which I couldn’t even see at that point. Miraculously made it there and preceded to be sicker than I ever have in my whole life. The girls were sleeping still in the other room, so I pulled the help cord, and nurses came, and immediately got a doctor when they saw how sick I was. They wheeled me through the tunnels to the adult hospital, and for a while things were pretty much of a blur. When I became more aware of what was happening, I panicked wondering what was going on with my girls in the other hospital.

Who you gonna call, as the saying goes? I never leave Maddie alone when she is in the hospital, and now I also had Mikaylah over there as well. I felt absolutely helpless as I tried to sort out what to do next, and from whence would my help come.

On top of that worry, I had doctors and nurses talking about STROKE, and then migraine. I never have headaches, and little or nothing about stroke, so imagine my panic. Certainly, I have enough stress, but wasn’t sure if that could cause either scenario. Regardless of the diagnoses, I was in one hospital, they were in another, I was helpless, and definitely no longer feeling like I was invincible!

Now for the rest of the story…my friend Donna came and got the girls on Saturday night. My nurse and good friend Tami came to the house for the over night. I was not released until Sunday late afternoon with the inconclusive diagnosis of migraine, and the promise that I would make an appointment with a neurologist ASAP. I am trying to make one at this time. Maddie ended up back in the ER Monday night, but is doing better as of this writing.

God has been with us on this long journey, I think he was sending me a message. I got it loud and clear. AMEN.

Thursday, May 17, 2007 11:26 PM CDT

The dental surgery went off like clock work! All three doctors made it there and did what needed to be done. They took out three more teeth, but left two others that they thought they were going to remove because the roots were so short. They advised against braces because of the short root issue as well. I did not serial cast her legs this time, but may next month when we see the orthopedic doc again.

I can’t remember if I have ever mentioned that Maddie gets her nails done every month or so or not. She is all girl when it comes time to get them re-done she is quick to point it out. The nail shop in town is just another example of wonderful people that have touched our lives. An Asian couple own the shop and the husband does her toes and fingers with care and precision every time. She picks the colors and then he adds the hand painted artwork. If she tremers, or it smears he patiently does it over as perfection is important to him for her. When we pull up to the shop, he runs out to help me lift her and the chair into their shop, and when we leave he takes us out and helps me load her into the van. He does all of this for FREE, and if he is busy and the shop is full of customers, she STILL gets the princess treatment! Her beautiful little hands are the envy of all! One of the docs in the OR last week said her little blue finger and toe nails with the pretty pink flowers were the topic of conversation.

School is almost over, June 6th I think, but Maddie will go to 6 weeks of summer school. She is doing amazing things with augmentative device, Molly Merc, we call it. Her special ed teacher Karen has made the machine almost magical. Imagine sitting behind your desk at work, in the middle of a meeting, when an email arrives WITH a story attached hand typed by Maddie. The meeting was quickly adjourned as someone went off to find a Kleenex box…words can not adequately paint that picture.

We went to the movie last week and as so often occurs, people that aren’t handicapped were sitting in the handicapped seats. Now if you parked in a spot marked handicapped, you would be fined, right? But, theaters here do not enforce the observance of the marked handicapped chairs so people rudely ignore them. I politely kick them out! On this particular night, they were all full, I kicked people out as we wheeled the chair into position, but people still filled in the seats beside us. One night I had to sit on the floor beside Maddie, because the seats were filled, the show had started and I didn’t want to make a scene. One an elderly man, with a walker had no where to sit but up the stairs, I had enough. I kicked adults and teenagers out once again and stormed off to the manager of this AMC Theater. Two insensitive managers later, I finally spoke to someone who agreed to take my complaint to the corporate office. Monday, I got a call from one of their legal folks who kindly apologized, but said there is no law against non-handicapped people sitting in those chairs marked handicapped. Handicapped folks that want to sit there should walk out, find an usher and ask them to remove people to make room for them…I ask you, what is wrong with this ugly picture? If you frequent a particular theater please help handicapped people, by registering a complaint if the handicapped seats are not left open for the handicapped! We can make change happen here, one theater at a time! The attorney did promise that her managers would attend sensitivity training…I was thinking a ball bat to the knee caps might help them relate.
Was I angry…you betcha!
I’ll close on a beautiful, positive note. I got a call last week from a little girl in Maddie’s class. The sweet little voice on the other end of the phone said, “ Can Maddie go to dance class with me next week? You see it is bring your best friend to class week, and I want to bring her because she is my best friend!” As we pulled into the dance school the next day, 15 minutes late because we were lost, there was little Hannah, nose pressed up against the door, patiently waiting for her best friend Maddie! God Bless you Hannah!

Wednesday, April 18, 2007 5:10 PM CDT

Never a dull moment in the life of the Lang ladies! Tons of doctor appointments since I last posted, but that is nothing new. The magic of megace to stimulate her appetite is gone, as we finally realized that it was causing the Predosone like puff, or moon face. So we will start tonight on a new stimulate, Merinol. I pray that it works because she is currently eating little or nothing at all and that bothers me tremendously.

The scoliosis continues to be a problem and what to do about it even more so. I am looking at alternate surgeries and speaking with doctors here and out of state to determine what our next plan of action should be. The problem with that is there is no one that really knows the answers least of all myself. I am fighting to keep her alive and well until the cure is found!

It’s taken a year, but finally I have managed to get all the docs in one OR room together to do the teeth extractions! Glory be!! Overcrowding and a bad tooth in her poor little mouth might also be a problem for her not eating…do you think? The magic words to coordination were, “Would you let your child go into an operating room without having the doctors during the surgery even laying eyes on them OR looking at the history and physical before the procedure?” I don’t feel that it’s an unreasonable request, yet I get so tired of having to be the logical/rational thinker. We have now met everyone and the process goes on…

Now for positive stuff…the more we talk about this dreaded disease the more focus we force upon it! More is being done than ever before as I talked to Dr. Charnas, Peters, and Orchard this week. We must keep it up and press all of them to keep their eye on the cure. Dr. Giselman in Germany has the MLD mouse; we need to put pressure on him as well. Maddie was the topic of conversation at a recent doctor’s team meeting as well. We must stay vigilant.

Number 2 positive note…Dr. Charnas agreed with me that she is much stronger and that her tremor is less!!! Hopefully the food intake was a part of that success, pray that this new drug will work as well with no side affects.

Number 3 positive note…we went on a vacation, first in a couple years, and it was fabulous! The Florida weather was perfect. Travel and packing is like having a baby, once the baby is born you forget the labor! It is worth every second of it, and if one more person or process is changed and made better for handicapped folks because we accept the challenge with a smile; it’s a beautiful thing! We swam, and slept in, and met three of the Princesses, Mickey and Minnie, the Chipmunks and more because of a very kind person in the park. We saw Tinkerbelle fly and felt her magic all week. The fairy dust that was sprinkled on us will last a lifetime!

Tuesday, March 20, 2007 1:02 AM CDT

On March 16th Maddie turned 10! It is a birthday I will never forget. Her 4th grade class had a surprise birthday party for her, and I must tell you I felt like I was the one who received the gifts. To be a part of this magnificent out pouring of love and affection was indescribable. It started with being greeted at the car in the school parking lot and escorted in by two kids that weren’t even in her class…and it just kept getting better. Everyone in her class dressed in purple, in fact a ton of teachers and students in the school had dressed in her favorite color purple for the occasion. The room was festively decorated like a senior prom and her classmates could not wait to get her in there to shower her with gifts. She proudly wore a crown and birthday badges as she opened every single gift and card. Mr. Gallagher, another 4th grade teacher sang a Happy Birthday solo to her that had all of the kids in stitches. Mrs. Senden, her teacher and the project planner of this love fest was having as much fun as I was and we both were having trouble fighting back the tears of joy as we watched the unselfish acts of giving and thoughtfulness displayed by all the kids. She shared delightful stories with me from parents about their kids getting ready for the event and about how thrilled and serious they were about making it the best birthday ever…they succeeded! Some of the kids had Maddie written across their darling little faces and one little fella bought her glittery purple nail polish and told her he would do her nails for her when she got back from the doctor’s office. I will cherish the memory of that day, and pull it out of my heart whenever I need a lift, because for that glorious day, all was right with the world!

We celebrated again that evening at our favorite Chinese restaurant with more wonderful friends and she was once again the belle of the ball as everyone in the restaurant sang Happy Birthday to her. One of the other patrons caught me as he was leaving the restaurant and said, “I don’t believe I have had such an enjoyable evening in ages, and I wasn’t even invited to the birthday party! What a precious little girl your daughter is, and how blessed you all are to be surrounded by so many adoring, compassionate friends.”
AMEN and thank you from the very bottom of my heart to everyone that made this birthday so extraordinary.

Tuesday, February 20, 2007 4:51 PM CST

Tuesday, February 20, 2007

It’s been a rough two and a half weeks with trips to the ER, doctors, and two 911 calls to the house. Maddie had what I guess they are calling pneumonia again, or respiratory distress. Her lungs get crackly and full and then she struggles to breathe in between nebs. The sinus drainage acerbates the problem because she struggles then to clear it. I have a suction machine, that I use if needed just inside her mouth, but have not used it to deep suction where the problem really lies. Hospitalization is always a scary thing especially when there has been so much FLU (5 deaths here this season) and strep around. I can manage the IV once it is placed, and when I have an LPN or RN we can manage that as well as increased nebs and meds, but problem number two arose. Nursing hours shortage…which means no or limited coverage to help take care of her and get her through it. If she is in the hospital, she needs constant supervision to be safe, so I stay, which isn’t popular when you have a job! SO…I prayed a lot, pushed the envelope a lot, prayed some more, and the team pulled together to get her through it. I cannot tell you, but most of you that share our situation can relate, how terrifying it is to watch your precious child going through this. It seems at times that no one gets it or is working hard enough or fast to get her past it and well again. It truly has to be a team effort, docs, nurses, pharmacy, ER staff, doctor’s office staff, family, and friends! A great big thanks to Maddie’s classmates for sending get well wishes and valentines. And thank you to Maddie’s teacher, Mrs. Senden and one of our nurses Doreen who brought delicious meals over for us. WE have truly been blessed…AMEN.

Note the new pictures, the one on the front page is Maddie with Wyatt the day he visited her school. Check out the pictures at the bottom, under the camera eye for a glimpse of Maddie’s boy friend Bennett. Mikaylah is there too. Check out Maddie’s hair. I just had 2 inches cut off of it, but it still is at the point where she can about sit on it. I love to wash and braid it, and then take it out the next day or so when it dries, it looks so cute. Take a look for yourself at the picture at the camera site. (I have no idea how to make them smaller.)

Maddie is still eating like crazy and we all get a kick out of it. I bought a bigger lunch box for her and she seems to be a lot like the hungry, hungry, caterpillar. Cheese puffs,
(Thanks to Kristina and David for keeping us in great supply) and guacamole still ranks high on the list.

Happy Chinese New Year to One and All. Celebrate the year of the Boar!

Wednesday, January 31, 2007 11:34 PM CST

The magic word is Megace! Maddie is an eating machine for the first time in 3 or 4 years, and she is not choking on it. Megace is a drug similar to the natural female hormone progesterone and is used to treat breast cancer and endometrial cancer, and now has been found to stimulate the appetite!! She asks for food from sun up to sun down and sometimes in between. Her tastes have returned for guacamole (sometimes at 5:00 a.m. much to my dismay) and Chinese cheese puffs; I wish they sold stock in both. The teachers and kids at school have never seen her eat like this and they think it¡¦s so neat. I even had to buy her a bigger lunch box to hold all of the special requested food she wants all day, great problem to have! Tonight as she was just dozing off in my arms she ask if she could buy hot lunch tomorrow and have cheese soup for breakfast! Thank you Lord!

The surgery went well on the 22nd. They opened up her tear ducts and were surprised to find that instead of draining out her nose, they were going into her ears if that makes any sense. I was so excited to see the results I was trying to figure out what I could do to make her cry so I could see what it would look like¡Kbad Mommyƒº The teeth removal has not been done, so I am back at trying to schedule that now. It has taken 6-8 months to try to coordinate, if only we could trade places so they could see what it feels like to be on this end of things.

Once again I was the project manager for our national sales meeting. It was held in Minnesota this year. I hired two fantastic folks to motivate and energize the sales team and both presentations were phenomenal. Dick Hoyt of team Hoyt fame, the 66 year old father that runs marathons and triathlons, pushing, pulling or riding his 45 year old son who has cerebral palsy on a bike, brought tears to even the toughest in the audience. His ¡§YES WE CAN¡¨ attitude was infectious as he made them think about what was really important in life. Google team Hoyt and watch the 4 minute video that brought the group to their feet before he even got up on stage. The team building activity was a rocket building event, which was an eye opener for many as well. Imagine almost 200 type A sales people divided into 18 teams with a box full of supplies, and instructions on how to build a high powered rocket that carried a required cargo minimum. Add to that, 33 handicapped children from St. Francis Capable Kids and some of their siblings split up on those teams with strict requirements to get them involved in the task at hand. It was beautiful to watch as for some it was a natural thing, for others ¡§not so much¡¨. But do it they all did, and once the time was up, a crew took all of the rockets to a local park and filmed their lift offs, while Rick Searfoss, (Google him too) a real live astronaut motivated the audience with film of his space flights and words of wisdom.
When they crew came back with their unedited footage of the firings, the teams cheered and laughed as their rocket made it up and out of sight or didn¡¦t. A great time was had by all!

Maddie and Mikaylah attended the team building event too. Maddie even took her very special friend Bennett and they were the center of attention on their team as he helped her participate and looked after her as if he were an adult. The beauty of that bond and the gentle caring spirit he possesses moved many to rethink their priorities and be thankful for their blessings.

Saturday, December 30, 2006 3:28 PM CST

What is the first clue that my son Wyatt is visiting us from Seattle? If you guessed new pictures on the website, you are correct! He is the technology wizard in our family. I now have 1527 songs on my IPOD, a personal website to keep me organized, a printer that works, and all of my photos off of my camera and stored on the computer! Glory be, whatever will I do with my free time?

The picture he put on the home page is Dr. Melchert, Maddie’s primary care pediatrician. I know I have mentioned on numerous occasions how blessed we are with excellent physicians, now you have a picture to go with the praise. Also note three new photos under the camera eye on at the bottom of the page. The snow picture is from last year, luckily we haven’t had any of that white stuff and frigid temperatures yet this season.

It’s been a great holiday season, Santa was good to us all. He made a personal visit on the 24th handing out gifts, singing with us and reading stories (thanks again Sue!). The Rollins family from church brought us a delicious Christmas dinner which we shared with friends, and we enjoyed the leisure time with each other. We turned off the phone, turned up the fireplace, and kept our pajamas on all day as we watched movie after movies and gobbled Christmas cookies.

Maddie had numerous appointments these last few weeks: GI doc, Back Brace, and Dr. Melchert . She had flu like symptoms that increased and prolonged her gagging/choking episodes, and stomach cramps. They ran several tests, changed her meds, and we are working on a new trial and error feeding regiment. They put her on magese to try to stimulate the appetite. It sure worked yesterday when we took Wyatt to our favorite Chinese restaurant and she ate like crazy. The back brace is much better than the one made for us previously, first of all it is molded to CORRECT the thoracic curve, it is lighter weight, and Todd the ortho king is dedicated to making it comfortable as possible.
She wears it several hours a day now, and we are even going to try to have her wear at night once to see if that helps. Doreen, one of her nurses, bought her a bumbo seat, a tumbleform seat she saw at therapy, but can be purchased at Walmart and Target. It is actually for toddlers, but since her weight is down a bit, 35 pounds, it works super for her. It is great for her when she sits on the bed as it is much sturdier and supports her back. I bought one to take to school so she can use it at school too. On 1-22-07 she has eye surgery, plus her Botox and phenol injections. I am still working on getting a dentist to pull her three teeth while she is out.

Wyatt and I visited her school, she was so excited for him to be there. He then addressed the class detailing his job as a programmer for Microsoft and stressing the importance of HOMEWORK. He also shared his experience in the video gaming industry and the kids were spellbound! He shared the website of his graphic artist friend with them that creates many characters in the games they play. It was like they were speaking a different language as they identified the characters and matched them to the games they knew. My eyes glistened with pride and a love that only a parent can realize as I watched two of my three kids together in this beautiful scene. I witnessed it as well with Wyatt and Mikaylah as they shared “grown up” conversations this week, lost in all that was happening around us. Once again, I am the lucky one, as I cherish the gift of family more than any other! Have a blessed New Year!

Friday, December 1, 2006 4:30 PM CST

The long awaited answer to the Halloween quiz…Maddie was a Penguin! She was much cuter than Mumbles on Happy Feet, and if you’ve seen it, he is hard to beat! It was poignant when I took a vanload of kids to see the movie, and she saw him up close and personal (3 rows from the front of the theater) and said, “He looks just like me!” When you see it you will know why I started to cry at her words, he was different too!

We went to Twin Cities Spine and were immediately impressed. Dr. Dennis and his staff were wonderful had done their research on MLD. He wants us to wear a back brace, but is in total agreement with me the one she had is not right for the curvature she has! The one Gillette made is for a lumbar curve and hers is thoracic. We immediately went to Fairview where Todd the Wonder Ortho (who also agreed that the current brace was not built correctly) begins making her a new brace form fit to the curve. There are no promises, but he has been with us for 5 years, loves her and is working in her best interest. They had their usual laugh fest when he danced around the room in size 22 Nike tennis shoes belonging to a member of the Timber Wolves Team, and then put them on her! She wears a size 8, with her AFO’s on!

December 4th we have an appointment with Dr. Orchard our BMT specialist, and then on January 22nd she gets her botox/phenol injections, and will have her tear ducts opened up, as she currently can’t tear. We still need dental surgery and a GI appt in the very near future. She just had 2 kidney function tests this past week and we are waiting for the results.

I am off my crutches, and trying to cut back on the Diet Pepsi that supposedly contributed to my hiatal hernia and acid reflux. I can’t do a thing about the stress! It’s times like these that I realize I am older, my mirror is funny that way I guess, I don’t feel like I look older, (silly me) until I start to fall apart! I am actually shrinking too, Mikaylah is taller than I am!

Painting is all done in my house so I hope to get it back on the market next week with a new fresh look. I need to get a ranch style home so desperately as it is certainly not an ideal situation to have Maddie sleeping in the living room where we spend most of our time. It is difficult to get her up the stairs and in the tub for a bath as well. I actually have to step into the tub with her in my arms in order to safely place her in her chair, and then to get her out, I pray before I get back in to lift her out because I am so afraid I will drop her stiff, wet little body. I have solved the Alvin (dog) going out to do his potty, by teaching him to jump in the van, we drive to the open field, he jumps out does his stuff and jumps right back in…drive and p--! But, I just don’t know of any other way to solve my other housing issues…Pray!

Friday, October 27, 2006 11:08 AM CDT

And the beat goes on…
Maddie’s curvature is worse so we have decided to take her to Twin City Spinal Specialists to see what we need to do differently. Our first appointment is November 9th. Since we will be taking the x-rays with us they might be able to tell us something right away. We have also talked to the orthotist that makes her leg braces from Fairview to get his opinion and with hope that her could make a brace if ordered that will fit her right, unlike the first we had made. Please keep her in your thoughts and prayers.

She also has 3 more teeth coming in over top of permanent teeth that need to be surgically removed to prevent crowding. I am trying to schedule that on the same day as our next Botox treatment as she must be sedated for both. That is always a nightmarish task as I try to coordinate all of the doc’s schedules. We will need an oral surgeon, peds dentist and an orthodontist. I hope to get this scheduled late November or early December.

She had her G/J tube replaced again last week and I took a urine sample in because I suspected she had an infection. Dr. Mom was right; she did so she is on an antibiotic. I also decided to put cranberry juice in her G tube daily as well as acidophilus (good yogurt) to see if that helps since she doesn’t eat much. It seems to be working.

Mikaylah went on her first BIG trip with out family this week. Who was nervous…not her! She went for three days up north with her sixth grade class. The enjoyed all that nature provides as well as team building activities to help them mature and grow. She loved it, except, she couldn’t get her sleeping bag open, was afraid to ask for help, (thought that was a man’s issue) so she slept with out one and had no covers. I just enrolled her in an after school homework club 2 nights a week, and her counselor is working on a “lunch bunch” for her.

Housing market is still awful here, so I took mine off the market. I really want to move so I can get her in a bedroom on the first floor instead of the living room, but I can not afford to lower my price on the office either, so we will wait.

Guess what Maddie is going to be for Halloween? Mikaylah is undecided, but says she’ll wait until the costumes are half price, what a kid!

Saturday, October 7, 2006 8:44 AM CDT

School is in full swing here, but I must admit we still struggle with the very early start times due to all that is required in getting the Lang ladies out the day in the morning. Once again we are blessed with a fabulous teacher and an exceptional bunch of kids in Maddie’s classroom. Each week assigned students get to help and play with her, a very coveted position I am told. I just set up a process where a student is selected by a drawing each Monday to come home with Maddie on Friday for a play date, and it is a beautiful thing to see them interact one on one! They color, play games, make her laugh and EAT, and I have to remind myself when watching and listening that she is sick at all.

Mikaylah is struggling in middle school for many reasons, but one I can’t help but recognize is that these 5 years of Maddie’s illness have taken a toll on her as well. She is used to the unpredictability of our life, and spends a lot of time alone because of the hours I need to spend with Maddie. She doesn’t easily make friends because we’ve moved numerous times; spend so much of her free time in medical situations, etc. I am working that through with the school, psychological testing, and the church as I search for some support for her.

Maddie’s speech is not as easy to understand some days so we are working to utilize the merc more to speak for her. It has not stopped her from speaking or from her famous singing, but I find myself asking her more and more to repeat things and that is frustrating for her.

We had a great weekend last weekend as we spent Saturday trudging through a corn maze, listening to banjo music, a hayride, pig races, and eating kettle corn. If you need exercises folks, pushing a wheel chair for a couple hours through the muddy maze might be the answer, I felt it the next day in places I never knew existed. The memory of her giggle every time I struggled to push her through a mud pit made it worth the pain. Sunday after church we headed for the arboretum for apple eating, a scarecrow contest and a beautiful walk through the splendid colors of the foliage.

The back brace issue rages on as the soft side corset is now being compared to our original hard sided one. We have an appointment next week for more discussion.
I still need to make an appointment to have one of her extra teeth pulled by an oral surgeon, and hope to finally get that done next week. The new wheel chair is still IN PROCESS, amazing isn’t considering that it is her LEGS! My goal in life besides finding a cure for MLD is to change the way ALL people view and help critically ill children and adults. If I could wiggle my nose like Samantha or put them in a situation like Scrooge, I would make people briefly live as a critically ill person and see if their behavior would change!

Tuesday, September 5, 2006 4:50 PM CDT

Tuesday, September 05, 2006

First day of school today…where DID the summer go? First day of school is always an emotional one for me, I can’t explain it, but it is! It started with Wyatt and then just continued for the girls, the floodgates open as I walk away and leave them, knowing they are closer to adulthood. Well it used to be as I walked away, but today I was sobbing so hard at Mikaylah’s new school that I could not see to help her open her locker! The middle school seemed so big, so busy, and so full of kids going every which way. I never went to middle school and I never changed classes when I was in the 6th grade. I thought I was queen of the six grade in elementary school, and then there was Junior High (7th, 8th and 9th) and then finally high school. I am not sure I like this change and I wasn’t feeling to confident leaving her behind alone to find her way. I liked it much better when as a 6th grader we were the BIG kids, and not the baby adults as she was today. I called there three times after I left to make sure they would help her get her lunch out of her locked locker… (Update - She got her lunch out of her locker ok and she had a great day! All that worry for nothing, that is a mother's prerogative isn't it?

Maddie’s day went much better. Once again we have a fabulous teacher and a super group of young kids in her class. Several of them from her third grade class last year, thank you Mrs. Mobeck! She and I talked to the class about her disease, shared the website with them and talked about them helping her every day in class. She used her Merc (Augmentative device) which Karen Talbert programmed special for the day and it was a big success; we were like the Smothers Brothers! Thank you Karen! Thank you also to Dr. Bjorker for sharing Maddie’s last neuropsychological test results with the staff at Maddie's school giving them a better understanding of her unique learning needs.

Maddie had Botox and phenol injections again a couple weeks ago, a much, much better experience. (Did I tell you we did a training video for the hospital around the first experience? They have shown it to all the staff and are using it as a training video) She has casts again and they will be removed on the 7th. I am looking into a soft corset instead of the rigid back brace, as we still have not found evidence that a plastic, non-movable brace is the right answer for her condition. Time will tell.

Wednesday, August 9, 2006 9:42 AM CDT

My Mom, my friend passed away on July 20th after a valiant fight with diabetes, including a kidney transplant in January. The kids (Wyatt too!) and I made it back in time to say goodbye and share memories of her glorious life with family and friends. Despite the fact that I know she is in a better place now, I miss her dearly and find myself dialing her number every day so she can “ride home from work” with me like she did almost every day since I moved here. Mike and The Mechanics sing a song, “The Living Years”, if you haven’t ever heard it, listen to the words, I am glad I did. Thanks to all of you that sent flowers or memorials to the Madigan Fund, your kidness and generosity was greatly appreciated.

We came back from Ohio and flew off again to the MLD conference in North Carolina. The conference was attended by families and doctors, warriors, gathered to share their knowledge and experiences of this battle called ML It was bittersweet, as I met other families that have hit my website with words of encouragement, but then my heart was broken as I learned more about their individual trials and tribulations. There are treatments/drugs on the horizon for human trial, but only God knows how soon, and if it will benefit our children.

We came back from that event and were the guests at a fundraising event this weekend planned by my friends. Most of you know how much music is a part of our lives, so it was very fitting to have Cahal Dunne, an infamous Irish pianist and crooner to entertain everyone. One of Maddie’s other favorite musicians from Church teamed up with Cahal and did a beautiful rendition of Danny Boy and Amazing Grace on the Sax. A raffle and silent auction was also a big hit, especially for some of my friends children who kindly signed their parents name on items OVER the retail value. Several of our doctors came which only solidifies the fact for us that they indeed care and are dedicated to saving her life! Cahal said he has never been surrounded by more caring, generous people in his life and I couldn’t agree with him more. We are indeed blessed!

We have a seating clinic appointment this month for the new wheel chair and hope to learn more about the back brace dilemma. Dr. Melchert is checking with experts all over to get their take on it. I am sure a decision will be reached very soon. Dr. Bjoraker and I are going to the school on the 16th to discuss Maddie’s neuropsych test results to help develop a plan of learning for her starting in December.

Wednesday, July 5, 2006 11:23 PM CDT

No bites on the house yet, keeping it neat as a pin every day is a struggle let me tell you… I prefer the lived in look! I quit looking for another place and will wait until this one sells. I just read that there are 30,000 homes on the market in MN. so it might be a while yet.

Heading to NC for an MLD conference at the end of the month. I am so looking forward to meeting many of the experts that are working to find a cure. I will be taking Maddie so they can meet her and be inspired by her courage and spirit. Two drug companies will be represented there as well and the rumor is that Zymenx may have something ready for human trial by year end. Please pray for that!

We spent another glorious 4th of July with friends on the beach of Lake Minnetonka listening to the MN. Orchestra and watching the fireworks. The weather was delightful and the MN. State bird, the mosquito flew the coop for the evening which added to our pleasure.

Maddie had two days of doctor’s appointments last week at the University of MN, including an MRI. She has an appointment with the ENT doc on the 10th and we are still trying to schedule the swallow study. We have no results yet, but once all the tests are done, I am scheduling a conference call with all docs to discuss the meds, the PT, OT, and speech needs etc so that everyone is on the same page. I am very disheartened by what is going on with the back brace, and currently have decided to take it off. As I pointedly asked when it was made for her, “Won’t this make her muscles weaker?” now appears to have happened. Her curvature is worse and I believe it is from the brace. I may very well be wrong, but we will discuss this during the conference to decide what should be done.

Friends/ and our nurses are putting together a fund raiser for us on August 6th at O’Gara’s Irish restaurant in St. Paul. A famous Irish crooner Cahal Dunne (www.cahaldunne.com) will be performing and a silent auction will be held. As most of you know, we love to sing Irish songs and nobody does it better than Cahal. He plays the piano, shares his Irish humor and will donate a portion of his record sales to the Madigan fund! He has been on PBS numerous times and we are excited to have him for this wonderful event. It starts at 5:00 PM, come join us for this fun filled evening! (I bet Maddie will coax him into singing her favorite song…)

Another poignant Maddie meeting occurred last week in Duluth. Maddie and I were in the hot tub at the Best Western exercising her legs when a man and his elder son joined us there. Both men were watching her as I put her through her stretching routine. Just when she was telling me she had had enough the older man started tickling her feet and clowning around with her making her laugh so loud that people came walking over from the pool to see what all the commotion was about (it was 10:00 PM). He flirted and splashed and exercised her tiny little stiff legs and she didn’t even know he was doing it. After an hour of work/play, she put her head on my shoulder to rest, and he asked me about her disease. Tears rolled down his face as he listened to our story. He then took the beautiful black onyx ring off his finger and put it on hers and said, “Darling, this has been one of the most beautiful nights I have had in years, your laughter was music to my ears. Please take this ring, one of my most prized possessions and meet me back here when you turn 21 so I can marry you!” I tried to return it, but his son waved me away saying it warmed his heart to see his Dad having so much fun! Thank you for the beautiful memories!

Thursday, May 25, 2006 0:06 AM CDT

What a wonderful day it was today. I met with the medical professionals at Children’s West regarding the mix up of a couple weeks ago. I came away feeling like I had been given a gift! It is hard to explain how the gift of others empathy and active listening for understanding feels, but after the meeting today I felt a bond and partnership had been formed that will empower 5 more people to be constantly aware of the reality of others. I know that they became a part of our team today and that gives me a sense of security that I need to stay the course. The candor and the heart felt remorse shown by this team filled me with a renewed sense of duty and accomplishment as I search for ways to put the patient back in the center of our health care system. This team filed a safety report, investigated the problem, put a solution in place, and shared that process change with me. It restored my faith in the system, and the people that manage it and gave me the peace of mind needed to feel safe and secure when entrusting the life of one of my most treasured gifts, Madigan, in their hands again. Leon Gorman, the man that built the LL Bean store, once said, "It is the way you own up to and fix the problem that one remembers” How right he is! Just one more reason made crystal clear why the move here was the right thing to do.

There is a movement here to build ONE Children’s Hospital combining the Children’s Hospitals, the UOM, and most recently Allina. This idea had to be originated by a woman, (ok, I am just kidding) because it is brilliant! For us it would be a God Send as I try juggling appointments at three hospitals, and 4 other clinics(plus mu job). It would be a teaching hospital on the forefront of research and development attracting the best and brightest in addition to the superb staffs they already possess. It would be a cohesive team with systems that communicate, expertise in more fields and equipment more readily available for more rapid treatment and diagnosis. Just think pediatricians and specialty docs with easier access to each other and the children they treat, learning and sharing their strengths for the betterment of children. For us, and families like us, it would mean one stop shopping to coin an old phrase,like a Super Wal-Mart! AMEN! If you live in MN., please call your state representative, talk to your hospital administrators, and call your local newspapers in support of this project…Do it for our kids!

It was the Maddie and Todd laugh-a –thon again as we picked up her new braces this week! Who will be the first one to guess the color and the design on her new AFO”S?
He really makes a difficult experience fun for her with his fabulous sense of humor and wonderful way with kids. Her little ankles are so turned in, and stiff, but laughter and tenderness are the perfect medicine that allows him to stretch them to fit in to the new brace. God put him in the right vocation, and we thank him for leading us to him!

Monday, May 8, 2006 5:17 PM CDT

Maddie had her botox and phenol injections on the 19th as planned, but not without a crazy, mixed up mess. As I have said more times than you all care to read, if only folks could have a “Scrooge” experience in the health care industry! 7 times I had to inform 7 different medical professionals at Children’s West that she was not there to have surgery on her nose and ear as the records indicated. A glitch in their electronic records database was supposedly the culprit, but why it wasn’t being corrected as I kept pointing it out,is beyond me. I was the female version of John Q, and it wasn’t pretty! The positive side of the nightmare is that the tone is reduced in her upper thighs, legs and feet after they did the correct procedure. We need to keep that tone controlled as both of her hips are already out of the socket. They also pulled 3 baby teeth. It was noted that she has an extra tooth, but I need to take her to an orthodontist to have that fixed. We went today to Maddie’s favorite orthotist Todd at Fairview for him to make her new AFO’S. It is always a laugh fest when the two of them are together…it was his birthday so she sang to him in dog language…that was his idea!

The new back brace fits much better, but makes carrying her very difficult. I can not imagine how uncomfortable it must be for her in that thing, but as always she never complains. It does help her sit better and appears to aid in her breathing and speech. I notice an increase in her saliva, which really makes talking difficult as well.Maybe removing the extra tooth will relive the crowding in her mouth and help that too!

We are working with her OT; PT team to get her wheel chair adapted based on all the changes and look forward to one that is more comfortable for her and easier to take back and forth to school.

We had two successful garage sales the last two weekends and were happy to sell many of our once treasured items to those who can use them…while I also rejoice in the fact that we won’t have to move them when we finally sell the house. None of my kids share my enthusiasm for the garage sale experience UNTIL they reap the rewards, and then they are all about doing it again next year. The Kool-Aid stand is always a big hit and going out to eat afterwards because Mom is to tired to cook is always fun too.

The Ronald McDonald House is teaming up with a family from Wisconsin as they build a lodge in the north woods for families with critically ill children. It will be called Faith’s Lodge in loving memory of baby Faith who fought and lost her battle. The family has plans to build a safe haven for families to commune with nature and share the bonds of friendship with others currently going through or that have gone through similar experiences. Maddie and I got to meet with Faith’s parents today as they discussed their dream. As I was driving home today, I thought how wonderful it would be to join hands and hearts again with our friends that we lived with as we went through transplant. To sit around the fireplace together sharing where our lives have taken us since would be poignant and cathartic I think. It’s a beautiful idea that blossomed from a tragedy and will live on to create new, fond memories for many in need of respite.

Sunday, April 9, 2006 11:18 PM CDT

The decision has been made to sell my house. I just doesn’t work for us without a bedroom on the first floor and no full bath. So I have been working like a crazy woman to paint, clean, declutter and get rid of stuff. I have been looking for several months and have not found anything I can afford that works, so am pondering the thought of building a rambler/ranch that will work for us. The problem there is I really am not comfortable building before my house sells in this volatile market which brings a whole new set of problems, right? I really need the lift to get her in and out of the tub, I am so afraid I will drop her when she is wet. Pray that my house sells quickly, please.

We have a busy calendar in April. Neurology, Spine, Hip appointments, Botox and Phenol injections, and teeth pulled in the next two weeks. Serial casting, and new brace fittings, plus working on a new wheel chair and adjustments for ehr old one. She has been eating well lately, and is very vocal when she is hungry. I taught her a new word the other day and she shocked the nurse when she used it correctly in a sentence…ambidextrous. She proudly announced to the nurse that she was special because she was ambidextrous…she is special for more reasons that that.

I have been asked to be on the parent advisory board at the UOM medical school. There are 5 other folks on it as well, and we will be the voice of the patient and family as we try to facilitate a patient centered culture there by sharing our experiences, needs and ideas. I am really looking forward to it. We have had one meeting so far, and now will be on a panel discussion April 28th. I think we can make a difference in the way health care is deliverd and am honored to be a part of this team.

Monday, March 20, 2006 4:54 PM CST

And then she was nine…Maddie celebrated her ninth birthday on Thursday March 16th. We actually started celebrating on the 15th and continued through Sunday. A heart felt thank you to all of you for helping us get there: My family for your thoughts and prayers, friends from all over the country, from work, RMH, from New England, who with undying love and unconditional support lift me up when I stumble or can’t walk alone, Teachers (Mary, Barb, Karen, Mr. Hunt) who continue to find the best ways to encourage her development and celebrate her uniqueness and growth, Therapists (from school and Capable kids) for working on new ideas to strengthen those muscles and speech patterns, the Merc team (Deanna) for never giving up the fight, her third grade class mates for their affection, attention, and adoration, her nurses past and present, who have forever changed the meaning of dedication in my mind, to Mikaylah and Wyatt for being the loving, patient, giving siblings that make the blessing of Motherhood even more beautiful, and for all of the doctors with healing hands and hearts who keep us in this game called life…I celebrate you and thank you from the bottom of my heart for helping us along this journey and celebration.

Maddie was the star student last week in school and on Friday she got to go in front of her classroom with her bouncy star headband and talk about her favorite things. She picked a very special little boy friend, Bennett, to ask her the questions. He did a super job of asking and interrupting her answers for the class. We then showed the class the TV video that was made when she was four. She could walk and talk audibly then and that angelic spirit that we all know and love once again lite up the screen. As I looked around the room, I saw the wonder in the eyes of her class mates and teachers as they witnessed for the first time the tradgedy of the disease that we live with. The love and adoration that showed so visibily on their faces is a testimony to the goodness within each of them! As I looked behind me at Maddie standing so stoically in her stander, I heard one of her little friends, who was holding her hand, say, “ You are even more beautiful now, Maddie!” Out of the mouths of babes…

Don’t wait for a birthday to celebrate life…God Bless you all.

Wednesday, March 8, 2006 2:20 PM CST

Maddie is still home from school because of a chicken pox out break and now spring break has begun. She has been vaccinated, but as we parents know, that really doesn’t keep our children from getting the stupid things. We school here at home when she is out to keep her little mind thinking, and she never hesitates to give us her opinion of what works for her and what doesn’t!

She now has her for own Merc, a talking device, that is being programmed for her to help her in situations where we just can’t quite understand the message she is trying to communicate. Other than the fact that the voice is a male adult, she is working well with it, at home, school and especially Capable Kids. It is supposedly windows compatible so her dream is to compose an email to her beloved brother Wyatt very soon.

She is due for Botox and Phenol injections but also needs a tooth or two pulled again under a general, so instead of putting her out twice, I suggested we coordinate both procedures for the same time. What a nightmare that has been, sometimes it feels like it’s another full time job doing OTHER PEOPLES jobs! Finally it is scheduled for 4-19-06.

I am getting the house ready to put on the market…I must be nuts, right? I still am not totally unpacked from the move here, but we need a bedroom and a bath on the first floor to better accommodate her needs. Right now she sleeps, eats and plays between the living room and kitchen, not much change of scenery for her. I have searched high and low and finally decided it is best to sell first and then see what I can afford that meets our needs. The good news is if I haven’t used it here yet, chances are I don’t need it, right?

Mikaylah is happy to be home on Spring Break, and continues to amaze everyone with her artistic ability. Her talent blew my brother, who is an art major, away and encouraged me to get her into an adult art class.

My Mom is finally out of the hospital, staying with my brother until the kidney kicks in full time. She still has to go to dialysis because it is not performing up to par yet. All looks well docs say after the recent biopsy, they just aren’t sure why it’s not performing at 100%.

Thursday, February 9, 2006 5:17 PM CST

Time flies when you are having fun, sort of. As always, the Lang women have been busy since Wyatt's wedding in December.

The girls and I went to Florida last month because I was the project manager for the GE Fleet Sales meeting. For those of you that know us well, you might remember this has been my annual job for a couple years now, the first year Maddie got sick, and I rushed home, the second year she got sick and I flew in late, so last year I begged a nurse to go with me so the girls could go too! I found a doctor at a near by Children’s Hospital to be on call and away we went to CA. It was such a delightful time that this year we did it again in Florida. I worked and relaxed knowing they both were safe and sound with me and they had fun in the sun.

It was touch and go the weeks before we left, as she was out of school for 2 and a half weeks with a fever and respiratory illness, but we saw her doctor daily before we left and he said go for it. We saw him immediately upon return and he was blown away with how healthy she was. Lungs were clear, no fever or gagging, and she gained a pound! How awesome is that!

We came home and I immediately rushed to Ohio as my Mom had received word that they found a kidney donor for her and she was in the hospital. My nurses quickly picked up the slack to cover so I could fly out there to be with her for several days. She is still hospitalized with several issues from the transplant not yet being resolved so I ask you all to keep her on your prayer list.

Maddie is also sick again and has missed several days of school. Mono and strep are going around at school and no matter how wonderfully protective her classroom friends and parents are, she still manages to get something. It breaks my heart, she loves and misses school and the kids miss her too! She also misses her PT and OT at the community center that she enjoys as well. When she is home she thinks more about her illness and cries sometimes because she is so tired of being sick. That is the hardest thing for me to deal with, as I am always so able to find a way to fix things and haven’t been able to change this yet!

Wednesday, January 4, 2006 0:55 AM CST

We have set a record…2 years in a row now we have celebrated Christmas and New Year’s Eve at home! And celebrate we did, beginning with my son Wyatt’s wedding, a match made in heaven. His new bride CeCe, is adored by all of us, and has quickly become family as she joins us with helping hands and a compassionate heart. She is teaching Mikaylah Japanese, no it isn’t a typo, my Chinese daughter is interested in the language as well as their art and culture. It was the first Christmas we have all been together in over 5 years, and believe me that was the greatest gift of all! I never knew when I embarked on this journey called parenting that it could possibly be this magnificent, but it truly is all of that and more!

We also made memories with two other very special friends this holiday season, my friend Karyn who I worked with at GE Lighting over 10 years ago when I lived in New England and Kay whom I met in China over 11 years ago! Karyn showered the kids (all three of them) with gifts and attention, and she and I caught up on life, old friends, and work as if we chatted every day. Kay came all the way from Oregon bearing gifts and her guitar to reminisce about our meeting 11 plus years ago in China when I adopted Mikaylah. It felt like yesterday as we all sat on the floor and sang song after song wishing it could last forever. Kay sang for us on tape when Maddie was hospitalized and her melodious voice helped Maddie and I through many rough days. It was like a dream come true to be hearing her and singing with her in person! What wonderful friends I have been blessed with!

Maddie has been healthy and never happier than when she is in the arms of her adoring brother, I swear it is the best medicine of all! She ate well, drank (Orange Soda and Chai Tea of all things), talked up a storm, and teased as only she can. The sparkle in her eyes when she is on Wyatt’s lap is a picture I wish I could paint for you. Mikaylah is exactly the same way, I am lucky either of them slept while we were there. I just sit back and drink it all in. I wish we could capture the feeling in a pill to take every single day.

So many of you have asked how you can help, because I never quite know how to reply, friends and the First United Methodist Church of Bellevue in Ohio started the Madigan Fund to help ease our medical expense burden. The fund is a 501C3, tax deductible fund and donations for medical expenses are graciously accepted by the church at:
FUMC
Attention: Madigan Fund/Jeanie Pugh
901 Northwest Rd.
Bellevue, Ohio 44811
Phone: 419-483-4260

I hope your holidays were as wonderful as ours and your friendships are as precious!

Monday, December 5, 2005 9:24 PM CST

In 2001, John Karel and his wife bought Maddie a gait trainer, when the insurance company denied it. The gait trainer is a modified walker, with a seat, and leg/feet straps to help her walk, hence the name gait trainer. She used it after the first transplant, but has not been healthy or strong enough to use it since. The new agency that we use for her PT and OT, ordered new parts for it, and put her in it last week and she took 5-6 steps for the first time in years! It took her a while to lift and place her feet, and then pull herself up to a standing position, but she never gave up, and every one gathered round to cheer her on!

Saturday, I put her in it at home, and she managed a couple of steps for me as well. But she seemed tired, that is until I suggested we use it outside in the SNOW. She perked right up and begged me to bundle her up to go out. With baggies over her sandals and braces, her fancy pink hat from Brielle on, and her favorite purple mittens covering her freshly painted purple nails,outside we went. She took several steps in the drive-way and actually slid along as if she were skating after that. I had a brain storm, and put a plastic sled under her feet, in between the legs of the gait trainer and then I could push her when she got tired and it was like she was sledding just like all of the other kids! WE had a ball, and even I forgot how bitter cold it was.

I wish you all could have been here… thank you John and Dyna.

Tuesday, November 29, 2005 0:25 AM CST

When I think about what I am most thankful for this Thanksgiving I must say the magnificent doctors and nurses that remain committed to us. I have never met more compassionate, caring, dedicated human beings then our doctors,to many to mention all by name. I am confident and comfortable in their ability to assess and treat Maddie as they do so with the utmost kindness and true concern for her welfare. To watch her primary ones, Dr. Melchert, Dr. Peters, Dr. Charnas, Dr. Gormley, Dr. Bjorker, laugh and tease with her as they expertly examine her is a gift for me as I know she is in good hands,truly dedicated to helping her through this. I never feel that they take their responsibility lightly, and I never feel like we are an imposition in their tireless day. I wish I could have met all of these professionals in another way, because I would certainly choose their attributes for friendship. I am in awe of their talent, dedication and contribution to her care and could not survive this if they were any different. They never seem to resent or dismiss my questions, and treat me with repect and dignity.
I feel like we truly are a team with one goal in mind...winning!

We did the Black Friday shop until you drop thing, first time since Maddie has been sick! For those of you that know me well, you may remember that I was always up and out by 5:00 am every year with a well laid plan to grab those door busters and red light specials. We didn’t make it by 5:00, as it takes a couple hours to get her meds, nebs, braces etc. done and get out, but we proudly made it by 6:00 am. With our favorite music on the car radio, singing at the top of our lungs,we drove in the snow storm, and hit the “store that never closes” in time to capitalize on the main objective. We had a ball, and even had the energy left to go see Harry Potter later in the afternoon.

I just scheduled an appointment with an ENT Doc, haven’t seen one of those in a while, because Dr. Melchert is concerned with one of her ears. I also scheduled an appointment with a skin specialist because she has a mole that is very dark and suspicious as well. We finally got the stander for home and it is awesome. I put her in it over the weekend so she could come out to the kitchen and help me cook. She washed a couple dishes, (and herself) and mashed the bananas for the banana bread (Alvin loved her for that…I never knew dogs liked bananas).

Sunday, November 13, 2005 1:55 PM CST

Maddie Trimper died last week and it hit my heart hard. I am not sure if it was because she too had MLD, she was close to Madigan’s age, because her name hit to close to home, or because her family and team Trimper have done so much to help make people more aware of this devastating disease as they fight for the cure. I never believed that she would die. Please keep her family in your hearts and prayers this week as they push on without her sweet face before them. They have two boys with the same disease…we must continue to work and pray for the CURE!

New legs braces, reworked the back brace for a more comfortable fit and finally got the hip swash back from the repair shop this week. I also met with the District 112 Team at school to expedite the purchase of her Augmentative Learning device, the MERC. Everyone is now on board and pushing for the same goal line. Her IEP meeting for school is on the 22nd and we will change her educational goals as she has surpassed many of them. She can now spell, OUT, THE, and GO on a pretty regular basis. She also can count depending on the day, to 20. The GO word is a big hit because she understands that word and has now added the “BORED” word to her vocabulary when she is trying to convince everyone that she is ready to GO!

Flu shots (SHHH! She doesn’t know that yet) and a GI consult are on tap for this coming week. We record her daily intake, but have had no one really monitoring that for us to tell us when/or what to do next. That is changing and I hope to have standing orders soon as what to do when her intake is not where it should be. Currently it is pretty much my job and the nurses to make sure she gets enough each day…that’s another degree I wish I had.

I saw a movie when Wyatt was here that I think more folks should watch. It is called WIT and it stars Emma Thompson. It is the tragic story of a very strong, independent woman who gets cancer and her struggle for life. It is graphic, and realistic, and it reminded me of something my neighbor said to me when her husband was stricken with cancer…”The hardest thing to handle was that most of our friends did not come to see US during our struggle and I so needed them then.” She needed them as much as her husband did, but because so many people are uncomfortable or don’t know what to say or do, they just stay away. Please don’t, get out of your comfort zone and reach out to someone this week that has lost a loved one, is struggling with disease or a tough time and ask them what you can do for them, and if they say nothing, like Emma did, don’t believe it! It is just as hard to ask…Pray for THE CURE!

Monday, October 24, 2005 11:19 PM CDT

We got phenol and Botox injections and casts 3 weeks ago. Today they removed those casts and put two more on…pink and orange this time. They said they got a real good stretch, and have big hopes of putting her in brand new braces on November 9th instead of another set of casts. AMEN! They also believe the back brace, TLSO is working, not really sure what that means though because while it visibly and audibly helps(it helps her lungs and airways when she sits up nice and straight, it doesn’t appear to be correcting the curvature and I think could weaken her muscles that WOULD work to hold her up. Is there a doctor in the audience that can explain that…Amy?
I sneak her hip brace on at night and off by morning as that is a 4-6 hour wear, and an unbearable thing to wear with the TLSO. Imagine sleeping in a brace that spreads your legs apart, plus wearing heavy casts that your little legs are to tiny to pick up and move around. Imagine hearing her little voice calling out at night saying, “Turn me over, I’m not comfortable.” It breaks my heart.

The girls were in their glory last week, not only because I took them out of school, but because Wyatt, CeCe, and our dear friends from Amsterdam were visiting. It was Christmas come early as we laughed and loved and shared together. We visited our favorite spots, went kayaking, ate, visited RM House, ate, exchanged gifts we had purchased for each other since last year (I got a husband, he is inflatable so I never have to worry about him leaving the toilet seat up), and ate some more. As we visited the Minnehaha Falls one warm sunny day that week, I felt like Robin was looking down from a puffy white cloud, glad that we all were having such a great time! I am blessed with the gift of their friendship; I just wish we could have met during different circumstances.

Wyatt and his girlfriend together, what a neat thing to view as a Mom…I could not be prouder of who he is and what he has accomplished. That truly is a gift for me! He never seems to tire of the girl's adoring attention, and CeCe steps right in as well to lend a helping hand. When people ask me about what age I like best as I raise my children, I honestly have to say all of them!
Sending prayers and love to Carolyn Wyman.

Monday, September 26, 2005 11:01 PM CDT

Please pray for one of dear little friends, Maddie Trimper, a 6 year old who also suffers from MLD. She is in the hospital with serious complications of the transplant/disease. Please keep praying for a cure to this devastating, debilitating disease. Like my Maddie she is a fighter, and your prayers keep us all in the battle.

We also ended up in the hospital Friday night. The retching and gagging has gotten worse in the last month, and then she had two short episodes of zoning out at school. When I got home and woke her up, she appeared groggy acting, hard to wake up completely. Then she gagged and retched and we had to vent her and allot of air came out of her G/J tube. She was very limp or floppy and un response to my questions or jokes, it was like she couldn't hear or focus at all. Her eyes were rolling, and moving around differently than her notmal Nystagmus, and she seemed to be struggling to keep them open. I had never seen her like this. I called the Ped Doc on call, but decided to rush her in before he had time to get back to me. She did not seem to respond as we drove and when the doc called my cell, he told me to pull off and call 911 for the squad to pick us up. She was starting to come out of it by the time they reached us, and was more alert by the time we drove the 16 miles from there to the ER. They decided to keep us and run tests. The Blood work came back ok, the CAT scan was normal, the chest x-ray was good, and the EEG showed no signs of seizure activity. Our neurologist is not at Children’s so he will also read it today and we will talk tomorrow. Dr. Siegel decided to release us Saturday night, before we caught anything there (6 other kids were admitted that night), but put her on Zertec thinking maybe allergies were causing post nasal drip. This increases her secretions which are already difficult for her to swallow and that increase was perhaps the cause of the gagging and retching. We will see our GI guy this week to discuss it further and maybe have an MRI based on Dr. Charnas’s read of the X-ray.

We went to church Sunday, and she kept asking for food, a rare thing the last few weeks. First it was, “Do we have Mac and cheese at home?” and then croutons…sounds yummy to me?! She ate bites of fries, soup, hamburger, apples and caramel dip and later she asks for fruit cocktail and cheezits. She had no gagging spells all day and none today. She had none of the other episodes we saw on Friday either. AMEN.

Wednesday, September 21, 2005 0:09 AM CDT

When school starts it’s either lice or Coxsackie virus (Foot/mouth disease) that always seems to find us, this year is no exception. The virus found Maddie, not sure it’s warm enough here for lice as we haven’t had that since we moved here from Ohio! She had a physical Friday for her Botox/Phenyl injections and casting scheduled for Wednesday, and Dr. Melchert discovered the mouth sores. I had noticed a tooth breaking through and the terrible bad breath and was worried she had more abscessed teeth. But the mouth sores and spots on her tongue are a product of the virus. Saturday night she had bleeding from the mouth and liquid coming out of the stoma (hole), not the tube in her stomach which meant a trip Sunday to the ER to fix that.

My good friend Janet McKee from Cleveland came out Friday to visit us and do some work for GE, little did she know that she would be spending her time in the ER turning the purple rubber gloves into balloons to make Maddie laugh. As always she stepped up to the challenge with a smile and made sure the day was a memorable one. “What a friend I have in Janet…” Thank you my friend for always being there for us and for knowing what to say and how to say it!

Maddie then took a trip to the Dentist on Monday to check out that tooth, and he said he thought all was well so far, but would need to see her in two weeks to double check after the sores were gone. The Botox/Phenyl procedure got cancelled for tomorrow due to the virus, can’t say that I am sad about that as we had a 6:15 a.m. appt.

I had a business trip to the Napa Valley last week, (more post cards Daniel) I know, tough duty right! I had never been there so it was an awesome experience for me. We worked, honest, and then we toured vineyards, did wine tasting, went to a cooking class, sat in the warm sun reading a good book, and to top it all off, had a massage. Beautiful!
I caught the red eye and was back very early Friday morning for her appt. It was like being in a totally new world, but I truly was happy when I landed safely back in my own.

Friday, September 9, 2005 0:26 AM CDT

Where does the time go? School has started and it will take some time to shake the summer brain waves out and get the studious ones in. The girls are in a new school with a new, VERY early start time…ugh! Many accommodations had to change including the nursing hours in order to handle the new schedule; kinks aren’t worked out yet for us “night owls”. Maddie is attending a full day for a couple weeks to see how she tolerates and thrives, if not, I will adjust time there and have her home schooled. The three braces, the feeding pump, and two back packs make the trek a bit of a challenge but one the team accepts with grace. She is in third grade and Mikaylah is in 5th.

We had a very busy and full summer even though we never really took a vacation. Maddie had summer school, PT, OT, Speech and aquatic therapy so we couldn't venture far. We hit many of the festivals and fairs right here in MN. We flew kites in the park, blew bubbles on the deck, feed the fish at a small lake, made some new friends, and continued to look for a new house with bedrooms and bath on the first floor. We were guests at an Asian donor drive where we spoke and then enjoyed a fantastic jazz concert by Keiko Matsui…buy her new CD, White Owl, it is great! The girls had a super time at vacation Bible school, and I was thankful that volunteer nurses were her guardian angels each night so I could run a few errands while they enjoyed themselves.

We went camping one weekend, not far from home, with one of our nurses and her sons. Mikaylah loved it once she forgot about the spiders. Maddie especially liked the shower in the bath house that was big enough to fit her in her wheel chair, me and Alvin. Trust me, Alvin wasn’t thrilled about it and we freaked one woman out when she walked in and saw his tail wagging under the shower door.

One of the biggest highlights of this summer was the kayak adventure! I love the sport, but until now, and have not had time or energy to put my kayak into a lake here. Well, we did it and all the good memories just came floating back…thank you for making that possible Robin, Diana, and Lisa from Maine. Maddie and I toured the lake braces and all, basked in the glow of a magnificent sunset and then watched Mikaylah get brave and take it out all by herself! Can’t get any better than this…

Wednesday, August 17, 2005 7:16 PM CDT

The Botox and Serial Casting didn’t happen as scheduled. Dr. Gormley decided to wait two months and do the phenol, Botox and casting under anesthetic…wonder if he would give me some?

We spent the day at Gillette Children’s in St. Paul where they customized the fit of her new 2 piece back brace. She choose purple with planets on it, we will add glow in the dark star stickers as soon as we find them again. It is a two piece contraption that fits snug from neck to just below the waist. The hip or swash brace attaches on top in between the hip bones and has metal bars extending down to her knees with cuffs that attach just above the knee and keep her hips at an angle and knees apart. Her leg braces go from toe to just above the knee. She sat on the edge of the examining table with my hand behind her head, and when the doc told me to let go once she started to fall to the side because it was all to heavy for her little body to hold up. She said, “Timberrrrr”. It reminded me of the armor worn by soldiers in the mid-evil movies, and I always wondered when I watched them what would happen if they fell down, now I know. A stander is being ordered, as well as parts to make her wheel chair fit better, and months ago we ordered a chair for her to eat in, we are still waiting for that. Something that is working very well for us is the TableMate, I know you have seen the infomercials; it fits perfectly on each side of her wheel chair and currently serves as a table. It slants in several positions as well, and folds flat when not in use…all for only $29.99, this IS a commercial. It’s great!

We went to the Irish Festival last week end and had a super time. We love Irish music, food and dance and were surprised to meet Tommy Makem in person and get his autograph. He is 74 and still going strong. He is the uncle of 2 of the singers in a band I found once years ago in New Jersey; I hired them in Cleveland for a party at the Irish American there. Wyatt and I went to see them in Maine when we lived there too. The band broke up and is doing a reunion tour in Milwaukee next week. We also heard a band here that we saw at the River Fest in Ohio years ago and have all of their CD’s. Small world even as Irish Music goes I guess!

Dr. Peters got a job in Kansas, not sure exactly what his new position is, but will pass on details when He gets back in town. His father is very sick and he is there helping him.

Hugs and prayers to all,

Tuesday, August 2, 2005 9:40 PM CDT

We had our appointment with the orthopedic spine specialist for Maddie last week as a follow up from the x-ray our Pediatrician took a couple months ago. That x-ray was done lying on her back so they did another one of her seated for another view of the situation. He has recommended a back brace to try to rectify the problem and prevent it from getting worse. As he viewed the x-ray he noticed her hips and said we had a problem there that was even more of an issue, (our last x-ray showed little problem, but that doc told us to come back in 6-12 months or less if we noticed a change)the ball of one of her hips is 42% out of the socket. It was obvious that he didn’t want to step on the other doctor’s toes, as he is not a hip specialist, but he said the situation has changed considerably since the last x-ray. Once I assured him that he could continue he prescribed an HLSO back brace, a hip brace, and recommended and wrote a script for a standard to be used at least an hour a day at home.

My understanding is that this is not uncommon for kids with increased spasticity because they don’t weight bear enough for their bones to stay strong and in place. The bright spot in the day, if you can call it that, was when he said, “I am concerned that her bone development is that of an eight year old instead of an 11 year old”…she is 8, they had the wrong bith date on her x-ray!! So the good news is that her bones are developing correctly for her 8 year old,little, 36 pound body!

As she and I drove back to my office to pick up my lap top I fought back my tears so she wouldn’t see my sadness. I glanced in the rear view mirror as I turned into the parking lot and she had on her fancy purple sunglasses and was singing with my CD “Thank you Lord, by Don Moen…out of the mouth of babes.

We go back for Botox and serial casting tomorrow, and on Thursday have the second measurement and casting for the back brace. Keep the prayers coming!

Tuesday, July 26, 2005 11:35 PM CDT

I can do anything, I have told myself that for as long as I can remember. It’s not easy and it has required learning, behavior change, and even philosophy change in some cases. It has been a struggle, but a learning experience none the less. There have been peaks and valleys, good decisions and not so good ones, but somehow I have managed to work (some may say "muscle" my way) through it. The experience of loving my child with this devastating, debilitating disease and watching her struggle to hold a cup, get it to her mouth, to talk just to be understood, to sit up, to do all the things healthy kids can do, is an experience that resembles no other. The pain and sorrow I hide just below the surface every single day, is eased ever so slightly with good counts, a good food chart, or a productive day at school, PT, OT or Speech. What never changes however is that I wish she were well, that she could do everything healthy kids can do, but no matter how hard I fight/work I can’t do that...for the first time in my life.

Thursday, July 14, 2005 2:36 PM CDT

We are once again infection free! AMEN! The new tube is working well, and last night she even ate by mouth, Italian Pasta Salad and Egg Drop Soup of all things! I am working on obtaining a new seat for her wheelchair to relieve the pressure on her tailbone and help her leg flexibility. I am also working to get the much needed parts for her gait trainer (walker) (thank you John and Dyna Karel) so when she begins to walk again it will be better suited to her needs. I have also been trying for months to secure an assistive/augmentative learning device, communication tool for her through the school to no avail. She has increased secretions, among other things that make it difficult sometimes to understand her. This computer like device will make it easier for folks not around her as much as I am to understand her. It will help her communicate her needs as well as transfer her knowledge so others can hear how smart she is. Finally today, they brought a device that she can use it until she gets hers. They worked with her, but wouldn’t leave it so we could practice with her; strange way to encourage usage and learning retention isn’t it? It boggles my mind, and sorely tests my patience to have to work so hard for the things she needs just to thrive.

We went to a birthday party this week that had a special guest – Hank B. Magic! He was a hit with young and old and Maddie was particularly impressed when he made chocolate money out of her penny! Mikaylah loved it when he made a live rabbit appear in an old seemingly empty box. I enjoyed the picnic fare, and the company. Mikaylah also learned something else that she was very quick to point out on the way home, “Mom, I know why you aren’t married, all the Dads are to young for you!” Kids say the darndest things…

Thursday, July 7, 2005 0:55 AM CDT

One never gets used to how quickly things change with this devastating disease! Fevers, loss of the little appetite she had, increased secretions, more gagging episodes, all signs something just isn’t right. A trip to the ER to identify the culprit only to find a new bug had invaded her system, at least new to us…stoma Titus (viral – mouth sores). Back to an old med we used during transplant, acyclovir, and a new one “magic mouthwash” instead of the dreaded nystatin. They, combined with the round the clock fever meds, enabled us to venture out to our favorite place to watch the fireworks, and listen to the MN. Symphonic Orchestra under the beautiful star lit sky.

Following a late night of food, folks and fun, we ended up back at the hospital when I noticed formula coming out of the stoma (hole in her stomach where the G/J tube goes in) almost as fast as I was pumping it in. Crackles in her lungs put us on an antibiotic to prevent pneumonia, and the old G/J tube was replaced with a new one with no real explanation for the leakage. There were times during that procedure that I wondered if the radiology team was angry that they had to work the holiday, or had been on a late night binge and were suffering from a hang over!

I have said it time and time again, that it is our dedicated, compassionate doctors that help me navigate these twists and turns on this highway to who knows where, and it is their never wavering dedication to us that truly makes the rough spots easier to take. Of course there are sometimes professionals along this highway that must have lost there way, because they seem to have an obstructed view of what kids like Maddie have already endured. It is those rare individuals that should have their license revoked until a time when they can visualize the race from the patient’s perspective steering clear of their own personal agenda! They need to adjust their mirror and follow the signs to patient centered health care!

Thank you God for Dr. Paul Melchert, who leads with a kind and gentle heart and is dedicated to making kids like Maddie feel better…he truly is on the right road!

Friday, June 24, 2005 11:47 AM CDT

Time flies when you are having fun! School is out for the summer…but we are very busy here with all the activities that come with the season! On top of that Maddie has OT, PT, Speech, and home schooling. She has all of the above several times a week, back to back from several different sources. She is doing aquatic therapy twice a week and totally loves it! This requires tightly covering the G/J site to prevent water getting in which would be like us getting water in our mouth. Since she is obviously buoyant in the water she is able to stand and move much better with assistance! AMEN! She is one tired little warrior at the end of each day that is for certain.

Her attitude and sense of humor remain intact, and I am amazed each day as she surprises us all with her knowledge and understanding of the activities going on each day. She is compassionate as always, but is quick to note when some else is not feeling well, and offers a back rub or head scratch. She is very aware of the needs of others and continues to sense when someone is sad or needs a hug. Her playful nature and her willingness to help/work are amazing. She is utilizing her non-motorized wheel chair a lot these days and loves to help me clean, bake, tool over to the window, or go outside and help me plant flowers! She listens to adult conversations, and adds her 2 cents and vision of the situation, many times hours after she heard it. The other day when I was giving her a bath, she said, “ Are you in love?” I said, “With my kids, why?” She said,” Are you going to get married again?” Now this is so out of the blue, since dating has not been in my scope of activities for a WAY long time, but she had overheard a conversation where she more than she should have and then deduced the above! Too cute!

Mikaylah is also glad to be out of school for the summer and is camping this weekend with friends. Maddie and I will join them after work today.

The phenol/botox treatments are working wonderfully! She just got new braces last week. She is eating more than she has in a long time which we attribute to the constant activity. It is neat that the milestones that many would take for granted are measurements of success that are the highlight of my life…a whole chicken Mc nugget down the hatch is a beautiful thing!!!

Friday, May 27, 2005 6:56 PM CDT

The Wine Feast was a fantastic event! The day began as a usual Pat Lang day, crazy, rushed, and to much to do in not enough time. I felt like Cinderella with a beautiful borrowed dress& jewelry, and my Wal-Mart heels. I used my SPA gift certificate for a facial and a pedicure so I felt like a million bucks. With speech in hand I traveled downtown, and of course got lost, once or twice, but made it there in plenty of time! I was seated with several of Maddie’s doctors as well as Dr. Tolar and his parents (doctors also) from the Czech Republic. He had made strides in Faconi and Hurler research in the last 3 years. It was a beautiful experience to be seated with such brilliant folks, committed to their profession, and dedicated to the healing of children like Maddie. The love we felt from all of them is why I have never regretted my move here!

I spoke after Maddie’s photo appeared on the big screen, and once I was finished Dr. Charnas wheeled Maddie up on stage. They joked with the auctioneer and then auctioned off a painting that Maddie had painted and pulled in $600.00 for the Pediatric Research Fund! I was scared to death as I paced back and forth before I spoke to the largest audience I have ever presented to, but once my feet hit the stage, my lips delivered the message straight from my heart! People need to hear about the reality kids like Maddie live with every day, because otherwise they are oblivious to the true meaning of life and become complacent. We have no time for complacency!

The pink casts are off and no one is happier about that than she was and the phenol/Botox made a huge difference in the tone in her legs and how well she can sit now. Dr. Gormley saw her yesterday and was very impressed. She then had new molds made for new leg braces. We played musical doctors that day as we then traveled to Children’s for an infection, skin granulation around her stoma (g/j) site, and then downstairs to CV radiology for a new tube to be placed. The bad news is that the spinal x-ray of a couple weeks ago showed that she now has a 19 degree curvature of the spine, scoliosis I think is what he called it, and so I am trying to make an appt. with another specialist ASAP to see what they can do for that. How much does one little 39 pound girl have to deal with?! My heart aches with every complication and I marvel at her endurance and courage. Pray that we can correct this with some simple procedure.

Wednesday, May 11, 2005 6:17 PM CDT

Thank you faithful readers for asking for the update. I have no legitimate excuses other than I have been so tired lately that I just haven’t gotten the things done I used to. My fingers are a problem from my fall in Feb. and are still swollen and painful. They now say they misread the x-ray and that I have a fracture at the knuckle on 2 fingers. I never had a broken bone in my life…is this old age creeping in?

Maddie is doing super! Two weeks ago our orthopedic doc put her under and did an experimental phenol block in her upper legs to give her more mobility with the end goal of walking in mind. They also did the Botox in the lower legs while she was sedated and then casted her. She has those casts cut off this Friday and we’ll see if they got her heel back down where they need it to be. If not they will recast her. She is getting tired of the casts, even though she loves to flirt with the new young man that helps put them on her. She is amazingly resilient and patient about everything, but they are so heavy (I can attest to that!) and she scraps her toes when the casts rub each other which hurts. My bag of tricks to refocus her attention is almost empty…any ideas?

We have finally found new PT, OT and Speech providers. The community center down the street houses an office for a company that does that. I am impressed with what I have seen to date, and Maddie has been very receptive and is working very hard for them. It is tough in the morning to get her there and then back to catch her school bus by nine, but with the help of the nurses we’ve done it. She is looking forward to swimming there on Tuesdays with her PT person.

Saturday night is the premier fund raising event for the MN. Medical Foundation/Pediatric research projects and I have been asked to speak to the guests. Last year there were almost 2000 guests between the two events which is quite intimidating, but several of my friends are sneaking in this black tie event to cheer me on from the back of the room, so I will be fine! Maddie will come up on stage after my speech to kick off the auction! Pray for great success, as this is where the funds are raised for equipment, and research projects!

Wednesday, April 6, 2005 10:57 PM CDT

Life is a team sport and I know that now more than ever! Meet the unsung hero and life blood of our team…Maychelle Ye (kneeling, her Mom is standing) our bone marrow transplant donor. She has taken my little VIP off the bench and given her playing time in the game of life! I owe her a debt of gratitude that I can never repay. Thank you from the bottom of my heart Maychelle,WE love you!

Monday, March 28, 2005 10:18 PM CST

We had a delightful week off last week as we shared Minnesota with my sister, her husband and their four kids. The Mall of America was a big hit, but the most fun of all was the 6 kids together for the first time in almost three years. The catching up of days gone by, the laughter, and the joy of gifts from home made it a memorable vacation. We had family pictures taken again, so I will post in early April when they are in.

Easter was sunny, and warm and really laid back. We enjoyed the solitude, Easter goodies, and watched movies most of the day. Maddie has had this very persistent cough, and sinus drainage that she struggles to clear and then gags on. So I did nebs every 4 hours to try to dry it up. She is on antibiotics and I built a tent over her vaporizer and our Easter candy so she could inhale that warm mist all day. The candy made it a lot easier to handle. She even thought her stretches and exercises were more fun under the “big top”.

She had an Augmentative Learning test a week or so ago to determine what equipment she needed to help her more freely express herself. We are currently waiting for the verbal results in writing so I can submit for insurance approval. I am currently working on a summer school time schedule so we can incorporate some aquatic exercise with PT at the community center here. She loves the water, especially the hot tube (only to the tops of her legs because of the feeding tube) and it truly makes a great deal of difference in her tone and flexibility.

Mikaylah is being tested for a learning disability as well both at school and independently through the international adoption clinic and our neuropsychiatry folks. She just had her eyes tested and needs new glasses again this year.

The biggest news since our last update was that Maddie turned 8 on the 16th. It is amazing how much more important events like this are. When the celebration was over and the girls were tucked safely in bed, I drug out the pictures from the day I first met her in China. I never dreamed I could love her even more than that first day when I took her lithe, little body in mine and hugged away her tears and fears, but I do! I know now that was practice for today. Thank you God for another birthday!

Wednesday, March 2, 2005 11:37 PM CST

What a glorious several days we have had (despite me falling and dislocating a finger and spraining 2 others, I’m too embarrassed to even go into detail)! We started Maddie’s 4 year post BMT on 2-21 with several appointments and tests each day. We finished with an appointment with Dr. Charlie on the 28th. Oh, where to begin with the good news…

The MRI results, no change from last year. AMEN! God Bless you sweet Maychelle! The Endocrinology report, once they used the Asian scale, shows us growing and at the proper speed for her age. Her weight was 16.7 k which is about 37 pounds, low for her age but her height was 109cm which I think is 43 inches,2 inches growth over last year. Her eye exam showed that she could read 3 lines better than in November, but Dr. Mom has told them for the last five years that she could SEE the stupid pictures, she just didn’t know what they were because she had been in a hospital she much and I was proven right! I held pictures of the objects in my hand; ask her to look at the eye chart and then point to what she saw on the paper in my hand…She knocked their socks off! She is making more platelets than Charlie – 405 to be exact. All of her other counts were equally fantastic. The only number we don’t have yet is her enzyme level, which Charlie will call us with it when he gets it. One of the best appointments had to be with Dr. Kendra, the best Neuropsychologist in the business. She understands kids like Maddie and she fights for all of their rights to be all that they can be whether it’s adaptive equipment or various therapies. She is an advocate for us with a heart of gold. She is writing her report for the schools to help us obtain the services/equipment so Maddie can achieve to her fullest potential. Kendra was blown away by how smart she was, but even more so with her determination to keep trying whatever she attempts until she does it. The tremors that would intimidate most folks she seems to take in stride as she just figures out another way to accomplish the task. She ate 4 pieces of Chinese corn with modified chopsticks, and couldn’t believe that I was crying with happiness about it. Her quick wit and cute answers show that she has a handle on life’s daily happenings and it was a thrill for me to see Kendra recognize what I have known all along.

She did things in the OT and PT evals that shocked Tami, one of her nurses, and all of her old therapists were there in full force to egg her on. She has a 2 hour Augmentative Learning eval on March 8th. Charlie reviwed the reports that were in and was very happy as well with what he saw. She gave him two ties, one we made, and one that Ria’s mom from Amsterdam made for us to give him…he put them both on which drew applause and laughter from her. We are truly blessed that is for sure!

We will bask in the glory of all this great news, and thank God for his many blessings.

Sunday, February 20, 2005 11:57 PM CST

We got more good news after the fabulous week away in California, no new casts! She still had a good stretch, so Dr. Gormley decided to hold off. He said he would like to wait until April 27, do the Botox as usual, but sedate her and try a procedure called a phenol block to see if could reduce the tone in her legs higher up. Since she is gaining weight and seems stronger he would like to see if can get her up walking again and this procedure has worked for others. Please keep her in your prayers.

Tomorrow is her 4th annual check-up at Fairview University of Mn. She has a series of appointments all week, and then meets up with Dr. Peters to discuss the results on the 28th. We start tomorrow with the MRI, Chest x-ray, and bone density study. She is on an antibiotic for 10 days because she has been exposed to Strep again and was running a fever on Friday. She perked up today, and hasn’t had a fever since.

A very nice bath chair was donated to us by Derrick who out grew it, and she is like a princess on her throne now in the tube. Tonight after she does her very adult like “ahh, ohh,” she says, “This feels like my very own SPA!” She would sit in there until the water turned to ice if I let her.

I tried everything I could to get Mary’s visa extended so she could stay another 6 months with us, but to no avail! The INS replied to my request that she was in violation of her visitor’s visa status because she was helping me with the girls therefore taking a job away from an American. How out of touch with reality they are! They need a dose of reality, there is a shortage of healthcare professionals, most of us can’t get the hours staffed we need because of it. The financial burden to working families is a fact they choose to obviously ignore as well. I did not, and could not afford to pay her, I supported her, and she helped us knowing that was the best I could do. She came to help because she cared, she had to leave because they don't. We will miss her. We miss you too Maychelle!
Please keep us in your thoughts and prayers as always this week.

Tuesday, February 1, 2005 11:24 PM CST

Last week was like the proverbial magical mystery tour! The girls and I and our nurse went to Las Angeles to meet our bone marrow donor. A snow storm here almost kept that from happening, but as luck would have it we made it just a little later than expected on Friday night. On Saturday morning we were entertained by the host form the Asian Donor program and a great time was had by all at a beautiful California aquarium. We went back to the hotel to change for the evening, and had to run to Wal-Mart to solve a little female problem Mikaylah and I had – you could see through our matching tops. While in Wal-Mart there was a robbery (never a dull moment for the Lang girls) so we were detained longer than normal until they caught the culprit (I know Paula, had I gone to Target I wouldn’t have had the problem). We dashed back to the hotel JUST in time to be picked up by a wonderful FCC mom and her adopted daughter for dinner before my presentation at the A3M (donor) event. Much to everyone’s surprise we learned that Mikaylah and Rachel both came from the (there are 1300 orphanages in China) MaAnShan orphanage in China and because of their age could have been there at the same time! I have never met anyone else, aside from our travel mates,from that orphanage, neither had she!

The magic continued as we surprised the audience at the affair with our grand entrance after our donor Maychelle Yee told her donor story with a slide show of our photos playing in the background. They stood to greet us and the tears fell like rain from the majority of our new found friends. The emotions I felt as I embraced Maychelle,her family and friends were indescribable. To have the opportunity to thank the person that gave my daughter the ultimate gift, the chance at life,with no expectations in return is a very humbling experience. I hope she and her family felt my sincere gratitude for a gift that I can never repay. Cameras flashed, hugs and kisses exchanged, gifts shared, and then I spoke to the audience and Maychelle from my heart the words I had dreamed of saying from the first day I heard we had a marrow match.

Immediately we bonded and knew that our family had a new member. It felt like we were college roommates back together again to share stories of what life had been like when we were away! The gifts Maychelle gave us proved that she had a window into our lives all along. It was a match made in heaven!

On Sunday we were driven to San Diego along the scenic coast line where the GE Sales meeting that I was in charge of began on Monday. We stayed at the magnificent Hotel Del Coronado right on the ocean front. I was very busy with the meeting, and the girls were too as Maychelle came every day and took them to special places; The Tea House, Burch Aquarium, Bike riding, Ice cream parlor, and of course shopping. We went on a Whale watch on Friday and met Maychelle later for a Pizza party. We laughed way beyond bed time, and felt the void when Maychelle left for her home!

We left early the next morning for the airport in a fancy big car, our lives enriched by what we experienced that week. The beauty of the week was not yet over however, as Maddie and I met a kind and gentle friend in the seat beside us on the plane. Maddie reached out to him and you would have thought they were long lost friends. They chatted, laughed, played and compared tans on our journey home. They held hands, and she called him her buddy as she fought to stay awake because she was having so much fun. When she finally succumbed to the inevitable, she had her head on his arm and her little hand was clasped in his. It was the perfect ending to a most beautiful week! Thank you God…Amen!

Monday, January 10, 2005 0:26 AM CST

The little “Diva” has new blue casts like her sweater in the Christmas pictures, her finger and toe nails, and the butterflies Tami put in her Shirley Temple like curls. Dr. Gormley and crew thought she had a hot date last week when she got her Botox because she was dressed to the “nines”! We will be doing the serial casting again, but she and I decided tonight that when these come off week after next, we will tell them we need a week off so she can stick her toes in the ocean when we go to meet our donor in CA.

Our church does this fantastic event several times a year called Respite night for families like us, and they plan super activities for the kids for several hours so parents can have some time alone. They have volunteer adults, a nurse for Maddie, a big sister for Mikaylah, to share and enjoy the festivities with. THEY love it and I catch a movie, have a Starbucks in front of the fireplace, or just do something I enjoy doing. I always come back missing them, but full of new found energy. Saturday night was one of those nights, and when I got home I was like a woman on a mission, a cleaning frenzy! In my quest to un-clutter and un-complicate my life by downsizing, I found myself looking at many of my once valuable treasures in a very different light. Things that I once thought I could not live without just don’t have that same kind of luster any more. My treasures are the 3 most important people in my life, and their beauty and worth can not be measured. I love being their Mom!

I did found earrings that I haven’t worn in years; I can’t remember that last time I even took the ones out I have in. Now days I can even be seen on weekends with the same jeans on two days in a row…shh! Don’t tell Mikaylah or Wyatt! It all comes down to priorities, and precious time. Life is unpredictable, so we must just live every second to its fullest. I guess it’s like the book says, Don’t Sweat the Small Stuff, 2 day jeans and coordinating earrings are just that! Watch for my stuff on EBay…we’ve got places to go and people to see!

Sunday, January 2, 2005 11:46 PM CST

We did it! We had a double play…out of the hospital for Christmas and New Year’s Eve! Keep up the super work prayer chains! We are all on antibiotics and the kids and I stayed home the week after we got out of the hospital. We were the recipient of many delicious home cooked meals delivered from our church, what a thoughtful group of folks they are! I went back to work last week, but really haven’t been able to entirely kick this thing. I still don’t have my “groove” back yet, and I will welcome it's return I can tell you that! The newspaper reported almost 1000 cases of pertussis in MN. and even more in Wisconsin, so we aren't alone!

We ventured out together to spend New Years Eve with our friends the Martin’s who moved here from West Virginia, and the Nadeau girls at the Ronald McDonald House. Bev and I cooked up some snacks, Donna brought the noise makers, and Brooke managed to get a pass to join us! A good time was had by all!

We spent New Years night at a slumber party in the country with one of our special friends Doreen and her family. We enjoyed clam chowder and snacks and watched movies until the wee hours, and then we crashed on the floor until morning. Another delightful memory made!

The Asian donor center in California has contacted us and wants to arrange a “meet and greet” with our second donor! We have waited for 3 years for this and are very excited to finally meet the person we only know as a 28 year old female, and a “very special donor” (per our transplant nurse). Arrangements are currently being made; we are counting the minutes to this wonderful opportunity. The date is January 22nd, in California, I will keep you all updated.

We are ready to take on 2005, thanks to the love and support of all of you! To steal a few words from Tim McGraw’s song, Live Like You were Dying, I encourage you all to “to live like tomorrow is a gift,” to make a difference in someone else’s life every single day! Appreciate your blessings, cherish your memories and the friends and family in them, and remember that, “You can’t control the length of your life, just the depth!” And to quote another Tim, “May God Bless you one and all!” Thank you for supporting us!

Tuesday, December 21, 2004 1:05 PM CST

We are back in the hospital as of late Saturday night. Her heart rate went sky high after her neb and wasn’t going back down very fast, so I called the EMS. After they checked her out they thought we should take her in. She had a fever that started on Friday, and continued through the day on Saturday.

We had our favorite ER doc, Dr. Tan, who is so thorough that you know that you are in good hands when he walks in the room and starts asking questions. He did a ton of tests before deciding to admit us. Dr. Melchert also kept calling and checking to see how we were doing, he is our doc and was on call. They performed a Pertussius test on her as it is going around in several MN. Counties. She just got her DTP vac on the 10th. Yesterday they came in the room and said we were under droplet precaution, and considered to be in isolation as we had tested positive to pertussius, which is Whooping cough. I had to call everyone that had been around us to get them on antibiotics, as well as myself. They thought I had walking pneumonia two weeks ago, and I had just finished antibiotics, but had to start a 14-day regiment yesterday. This antibiotic has side affects that sure aren’t fun…it will be a long 14 days I am afraid.

She is getting 2 antibiotics IV, and nebs 3-4 times a day. They just started a moisture neb type thing because she had a bloody nose. They believe that is just from the dryness in the room.

Keep us on the prayer chains so we get home for Christmas, we’ve been hospitalized for the last 4 or 5.

Friday, December 17, 2004 0:17 AM CST

Maddie has been fighting the respiratory bug ever since we were in the hospital at last posting, but things had settled down for her (not for me, I have walking pneumonia, the great news is that I don’t need a script for nebs, I just share hers…blessings!) a bit and I let her go back to school this week. Nurse Tami and I noticed congestion a bit today so I gave an extra neb tonight before bed. Pray that we are not starting this thing over again. Absenteeism at school has been high with reported cases of strep and whopping cough.

Both girls had a doctor’s appointment last week, and I arranged them to coincide with a volunteer event I organized for one of our GE sales teams at the hospital and clinic. I organized a Kids only shopping area in the clinic and on the 6th floor of the hospital where the kids could come and buy and wrap gifts for their Mom and Dad. My guys escorted kids one by one into our little store and helped them buy and wrap their purchases. We also handed out gifts for shopping with us! It was such a spirit lifter to see the little faces light up with delight as they made their purchases. It is of equal delight to see adults/men especially, give unselfishly of their time as they experienced a world they have never walked in, and knowing that they will never be the same for what they witnessed. My girls shopped in between their appointments, and also had a great time.

Dr. Melchert was excited about how great Maddie looked, and how she WAS (key word) eating. She is off prednisone again and eating slowed way down. Her reward, 4 shots, 3 immunizations and a flu shot! Poor child can’t win for losing. Mikaylah got a flu shot and a brief physical because of her early menstrual start. Nothing appeared out of line, but the doctor said girls do seem to be starting/developing much younger these days.

Note the time…I just got a phone cal that our sweet dear friend Brooke Nadeau just arrived from North Dakota, because Santa has found a kidney for her! The transplant will be tomorrow morning at 7:30. Please keep her in your thoughts and prayers.

Wednesday, December 1, 2004 8:36 PM CST

It is scary how quickly things can change in our life, and while you deal with it, you never quite get used to it. Our Thanksgiving plans changed when someone else was sick, and it actually felt good to not have to go/be anywhere at a certain time. Plus Maddie had started to get congested on Wednesday afternoon, so we camped out in the living room close to the neb machine (the floor doesn’t even compare to my delightful water bed) and slept doesn’t come easy under those conditions. We stayed in our jammies (until 6:00 PM!) until my wonderful neighbors realized we hadn’t gone away as planed and invited us over for a Thanksgiving feast.

Maddie’s condition continued to worsen and sleeping Friday night was pretty much out of the question as well. Saturday when the nurse came, I ran out to START Christmas shopping when I got a call from home saying she spiked a fever that continued to climb. I left my shopping cart in the aisle and took off for home calling the ER doc as I drove. By the time I got home her sats were not good and the doc told us to get to the ER ASAP.

We did and were admitted. Antibiotics, more nebs, a new g/j tube, and one ear cleaned out and then the nightmare began! A pharmacy blunder, a pharmacy not following written orders to use home meds, mixed up the wrong dose of baclofen and triple dosed her. I assumed when I watched it given that is was pulled from my home meds, but it was not (you see pharmacy’s ARE NOT fans of using your home meds and always push me to the limit on this. I don’t back down, which shouldn’t surprise any of you, but I thought we were safe since we had been there just 2 weeks before and gone over the same argument! Don’t ever assume!) She was so sedated, but she kept twitching and her mouth hung at times like she was having a stroke. They immediately started an IV flush and told me she should come out of it by late afternoon, but that didn’t happened! She still didn’t recognize me or completely wake until 8:30 am the next day! This was one of the most terrifying experiences to date. I have learned many things during this struggle and this one I hope you take my word for, you MUST take an active role in your own health care as well as those you love. You must educate yourself, as good as our health care system is, it has many; many flaws and you need to be prepared for accidents that can and should be prevented!

The good news is that her mouth has healed very well from the 11 teeth that were removed, and the best news of all, today, her Botox injections and serial casting were pushed ahead another month because the dose given in August is still keeping her heels in position!! This is the longest stretch in between doses and castings ever! And to top it all off, because she is on prednosone for two days she is eating - 3 egg yolks, and 3 chicken nuggests today! What is that saying, something about rainbows, silver linings, or lemonade? (Lack of sleep or old age has taken the toll on my memory! HA!)
AMEN!

Sunday, November 21, 2004 8:09 PM CST

All is well in the home of Lang! Amen! Maddie’s choking spells are much less frequent, she is eating more, and now going to school one hour longer (which includes math – I am sure she will be better at that subject than I am!). I think we need the G/J tube replaced again, as she is experiencing “no flow” problems, and all of the normal things we checked and experimented with haven’t solved a thing. The teeth removal seems to have been the magic this time, glory be!

Mikaylah turned ten on Tuesday, where does the time go? As the sib of an ailing sib she sure has been through a lot as well. I work hard to be there as much for her, but time gets a way from me, I promised her that I she and I would take time to be together and her eyes lit up! We celebrated her birthday 3 times this week, with different friends in 3 very different ways. Thank you everyone for helping her feel special and very much loved too!

A friend of mine from high school is doing a fund raiser for the Madigan fund. The fund was started by my GE manager, Rob Phillips, when Maddie was first diagnosed. The church that I grew up in Ohio maintains the account. A high school friend has a cookie company Cheryl&Co. and has pledged 10% of the purchases from her business when you use the code W5 (Madigan Fund) to the fund starting in September. She has fabulous cookies, cakes and other delectable gifts for all occasions! It is easy to place you order by using her online catalog, 24x7 at www.CherylandCo.com OR you can also call an order in by using 1-800-443-8124. Don't forget to use the code W5 when you order. We thank you and I promise you, you won’t be disappointed.
Prayers for my neighbor Kelly's father-in-law recently diagnosed with cancer.

Saturday, November 6, 2004 3:07 PM CST

What a week we have had! It started a week ago Thursday with those darn choking episodes. The nurse called me at work and said Maddie had such a bad spell at school she had to call 911. I called the hospital and they said to bring her right in…and here we have remained for over a week now. She had another spell that day in the clinic before we made it up to our room so the doctor that made it to our room the quickest witnessed it.

We have so many different doctors that work out of at least 3 different hospitals it makes one stop shopping so to speak very difficult. It’s a crime or at the very least a very poor example of customer service in my mind that they all don’t all have practicing privileges at each place. Since they do not WE must go to numerous locations to receive care for all the things Maddie needs. This hospital stay I strongly encouraged that they all come to us. It was a logistical nightmare, but we managed to pull it off with great support from Dr. Millie the clinic doc on rounds this week. She made sure we saw, ENT, Pulmonary, internists, GI, the folks we needed to see to get our AFO’s (leg Braces fine tuned), Nutrition, Social Work, Home Equipment (suction machine), Dentist, and she had a phone consult with our Neurologist for testing advice and interpretation. Since we were a captive audience, so to speak, it sure made sense to me to get everything done at one time! Maybe that is a Mom thing! She gave us a 2 hour pass to go to Fairview hospital for our Eye appointment. The good news there is that the cataracts have not worsened in the last few months so he wants to stay the course and see us again in 4 months.

She located (I had taken her to two that were not willing to tackle her special needs) a pediatric dentist willing to tackle our special needs, and then between the tenacity of the two of us, we got them to get here to look at her. The decision was made that she needed work best done under sedation, so Dr. Millie and I coordinated dental surgery on Friday, as well as a test pulmonary wanted to do that she needed to be sedated for. To me, it seems like such a simple concept, sedate once, do as much as you can while she is under! Well thank heavens, the surgeon came out after 2 hours and said, “She really needed work, I pulled 11 teeth, 3 were very badly abscessed, I crowned three and filled one! I can’t imagine her being able to function with that much pain and infection in her mouth!” Needless to say, it was a shock to her primary care docs and me, but we were so thankful to have it done. Now we all wonder, if that could have contributed to the choking or gagging problems. The pulmonary report was a good one, as was the EEG so we still aren’t sure of the real culprit. She is on IV antibiotics and pain meds as well as a new neb ATRAVENT to help dry up her own secretions. It’s working!

She has perked up today and has even taken several bites of chicken noodle soup. The gagging and choking has lessened and the AFO’s are not leaving red marks any more! Numerous victories, all under one roof! Amen for that! Hopefully we will be released on Sunday!

Unfortunately we had to root for W from our hospital room, but that we did! Neither of us slept until his victory was proclaimed. In the morning when respiratory came in to do her blow by while she was still sleeping, she awoke, looked up at him and said, “You look like George W!”

Saturday, November 6, 2004 3:04 PM CST

Tuesday, October 26, 2004 4:40 PM CDT

Somebody mentioned the V (for vacation) word out loud, and our planned October Vacation to Florida with the Prange’s ALMOST didn’t happen! Maddie ended up in the hospital due to chocking again (on her own secretions) three days before we were scheduled to leave. After testing for all of the suspected culprits, they came up with a sinus infection and she just couldn’t clear the drainage from the back of her throat. They were going to do a swallow test, but the team decided we needed the break more, so we escaped late Friday evening, packed until the wee hours (thanks Cyndy) and left town before the sun came up Saturday morning!

The vacation was worth the wait! The weather cooperated (anything is better than MN. weather), the food was delicious and the fun and relaxation with good friends was priceless! She had 3 chocking episodes while we were there, but her good nature and infectious free spirit were always visible. Ricky’s attention and the ability to hold the new baby kept her very busy and seemed to put the glow back in her checks. Rob always keeps us hopping with neat activities, like parasailing, jet skiing, sun set dinners on the beach, dolphin cruise, and shopping (or was that last one, Ria and my idea?). One thing for certain, he is now a Wal-mart fan!

Mikaylah loved the vacation as well. I could barely drag her and Ricky from the water each day. She met new friends, shared new experiences and quickly forgot the disappointment of so many vacations we have had to cancel these last several years! When asked what her favorite part was, she quickly said, “All of it!” I guess that pretty well sums it up for all of us!

Take time to make memories with great friends…it truly is medicine for the soul!

Tuesday, September 28, 2004 8:49 PM CDT

Happy Moon Festival! We will be celebrating with our good Asian friends at The Ming Wok tonight after they close! The girls took Moon Cakes to school and both of their teachers read the famous Chinese tale of the Moon Goddess, Chang E.

The garage sale was a success, I still have a lot more “gems” to get ride of but will start to sell some of my collectibles on Ebay. I think Mary was amazed at what Americans buy from one another. I could tell she had no idea of what I was doing as I started setting things out at 5:00 am. She jumped in quickly when I got busy! I would love to hear how she explained it to her family back home.

For the third time in less than 6 months, Maddie has asked me questions about her disease. I am not sure what prompts it, because each occasion was different. In her angelic little voice she asks an adult type question or makes a comment that catches me totally off guard. I try so very hard to maintain my composure at all times in front of her, to never appear sad or afraid so she will feel safe, but at these times I feel so inadequate as I calm her fears or give an answer. To give a positive answer with tears running down my face seems to me a contradiction of my words. I wish it didn’t hurt so much to love her.

Later that night after Maddie fell asleep, I told Mikaylah to pick up her books and DVD’s. and reminded her that Santa could see if she didn’t pick up her toys and put them away. I wish I had stopped there, because then I said” Santa won’t bring you books if you don’t treat them better!” She started to cry and said, “If Santa gets mad at me and doesn’t bring me what I want for Christmas, then Maddie will not get well and that is what I want from him for Christmas.” Its days like this that I feel the loneliness of single parenthood and wish that someone would hug me and give me the right answers.

Wednesday, September 15, 2004 5:22 PM CDT

They are off for THREE months! The casts that is, and nobody was as happy about that as little Miss Maddie! Dr. Gormley said her legs looked great, and that they had a terrific stretch allowing her heels to once again hit the ground and fit snuggly, flatly (is that a word?) in her AFO’s (braces). It goes on record as the shortest Doctor’s visit in ages…gotta love it!

She is eating as good as she did on the cyproheptadine, AMEN, so perhaps it was a psychological thing for her because she spent so many months vomiting and choking that she was afraid to eat. Hard-boiled egg yolks in soy sauce rank highly on her list of favorite foods, tomatoes with sugar (my dad and I loved them that way);and milk is still her drink of choice! She has a pudgy little belly now, and her arms and legs have awesome definition. And let me tell you, I can definitely feel her weight gain when I carry her up the stairs to bed. It is a VERY GOOD feeling!

The EEG came back normal so we are celebrating that super news! Thank you for the prayers and well wishes. Both doctors have decided to wait until the 3 year post BMT check up, October or November to do the MRI for further evaluation.

School is going well for both girls. Maddie now has her nurse as well as a para guiding her learning. She enjoys getting all “gussied “ up in the morning, and loves to drive her chair in the halls at school. I am not so sure the janitor feels the same way, as I understand she bounces off the walls a bit. She has definitely made progress over the summer, thanks to the team of folks that made that happen.

Garage sale time again! It is allot of work, but it’s fun. I have a lot of stuff that just doesn’t fit in this house since it’s smaller, and the girls have clothes and toys they have out grown. Several families will join the fun with their own sale, attracting more serious buyers we hope. Keep your fingers crossed!

Sunday, September 5, 2004 0:33 AM CDT

Old casts, new casts, orange cast and blue cast! Dr. Seuss I am not, but most days I wish I had gone to medical school I can tell you that! She has had a second set of casts since the Botox on the 18th and Dr. Gormley says she is getting a good stretch each time so these will stay on until the 15th when he will check them again.

Of course, it is never boring here. One of our nurses thought Maddie might be having small seizures. She would stare off into space, and you couldn’t seem to reach her for a few seconds. Coincidently, that same day I had talked to Dr. Melchert about reducing the dose of cyproheptadine she was getting because it was making her so sleepy. When later that day I told the docs about the seizures, (I had noticed that also, but did not know that was what a seizure could look like) they advised me to immediately contact our neurologist. I put out the call, but before they called back I did some research on my own. I went back and studied the side affects of the cyproheptadine and found out it could cause seizes or cause problems if on seizure meds. When the Dr. called back, he congratulated me on my detective work, but said despite cutting the med back,we still needed to watch her closely. Things were pretty quiet the rest of the weekend, but early Monday as Mary was getting Maddie’s hard boiled egg ready for breakfast, I noticed she was using this Chinese dipping sauce (for the egg) she had brought from China. Most of the ingredients were in Chinese, but the one that wasn’t, grabbed my attention…15% alcohol! I remembered the cypro…med sheet said, Do Not Take with Alcohol! So back to the phone I went. Dr. Charnas said “You are the one that should be drinking the alcohol, not her!” So needless to say we stopped trying to get her drunk,who would have thought! We watched her closely, and then on Thursday the nurse noticed it again. So we now have an EEG scheduled for Wednesday the 8th to see what is really going on.

The girls started school on Thursday, both at the same time this year, but on different buses. The bus picks Maddie up at the house at 9:00, Mikaylah walks to the corner. Maddie is only staying until 12:30 at this point in time, but may go longer if she can tolerate it. She thinks she is hot stuff with her new Pink Hello Kitty back pack (thank you Wendy Bradley)! I didn’t buy her one this year as there is one on the wheel chair, but she told me in no uncertain terms that was not what big girls used! I told her I would get one this weekend, and then magically there was one in the mail from Wendy before I could get one. How does that happen? Maddie is in second grade, Mikaylah is in 4th, where does the time go? Both girls have the same teacher as last year since they loop each year. I am very glad for that as I liked them both and they understand the situation. They have also promised to hire a Para or teach the nurses what they need to do to give her the best possible education.

She has a hard time sitting up these days, but that hasn’t gotten her down. She was helping Mary and I make a blanket tonight, and we were so busy working that we didn’t see her slide over, until that sweet angelic voice said, “I can’t see to tie my knots girls!” If only the Target ladies could have heard that…they taught me how to make the blankets at the Ronald McDonald House. The night of the RNC when W. was giving that brilliant speech (sorry Paula), she and I were cheering and she was making a W with her arms, when next thing I knew she slid off the small potty chair onto the floor, her arms never moving out of formation! If only she could vote!

Wednesday, August 18, 2004 5:06 PM CDT

I weighed in at 36.7 pounds today! You would have thought my Mom had won the lottery! Jumping up and down, hugging and squeezing me, and I think I even saw tears on her face. Funny, when she gets off the scales she doesn’t react like that!

I had to visit Dr. Gormley today. He is a very nice, soft-spoken southern guy, and I am told he is very smart, but I just can’t get by the pain I feel when I get the Botox injections in the muscle of my legs when I go there. They started the serial casting again, stretch and cast me every two weeks, and I can tell you that is not a fun experience either, not to mention that we were there for 4 hours. He has good videos there, but from my perspective, a movie theater is a heck of a lot more fun! Can you guess the color of my casts? I was pretty upset when I learned I could no longer get the striped ones due to cost, funny how they worry about cost for things that make a difference to me! Oh, well, I will just have to make a fashion statement with my toe nail polish.

I have heard that a lot of you like my new web picture. My brother wasn’t excited about having his picture taken, but I sure loved sitting on his lap. It makes me feel good when Mikaylah wears her “Kick MLD in the butt” shirt too! We all know how good it makes Mom to take pictures of us together. Make sure you check out the other new pictures at the bottom of the page, click on the camera and you will see 3 more. I can’t wait until you see me on my bike!

My Mom is always telling us kids how lucky we are to have so many friends all over the country. Once again she was reminded of that these last couple weeks as friends who worked with her at GE in Cleveland and Connecticut mentioned that they continue to check our site, and keep us in thought and prayer always. She came home with that spring in her step once again. I don’t always have a chance to tell you, since Mom does the site updating, but we sure couldn’t make it without the support of every single one of you. Sometimes, when I see that my Mom is sad, someone calls or does one of those random acts of kindness that Oprah talks about and I see the “ole” smile return to her face. Thanks for caring so much, we appreciate it.

Tuesday, August 3, 2004 3:40 PM CDT

The new drug to stimulate Maddie’s appetite is working! She is placing her order for various foods and then actually eating what she has requested! She ate a whole piece of garlic toast with cheese last night at the RM House, plus 2 slices of bacon, milk and soda once we made it home. She actually ate well all day!

She had a neurology appointment at the U yesterday and shocked them all by her growth, (height and weight) her humor, her beauty and her can do attitude. They are amazed at her ability to touch her nose with her toes, and her vocabulary use. I voiced my concern of Sunday where she was so stiff that had I great difficulty holding her on my lap or keeping her in the wheel chair because she was stiff and appeared unable to bend at the waist. They have ordered a swallow study, date to be determined. She had difficulty keeping her eyes open most of the morning on Sunday as well.

I didn’t take her stroller or chair into church with me because of her stiffness, so I held her on my lap. Her little body moved to the music and her skinny little arms rose in praise like the big people around us. During communion, a soloist played a kid’s version of Amazing Grace that they sang last week at vacation bible school, and right away Maddie perked up and started to sing along and do the motions they learned. The voice we all love so much could be heard in the seats in front and back of us, and when church was over numerous folks came over to tell her how much they loved her singing. Old and young alike are moved by the beauty and spirit of my little Maddie, and I so appreciate it when they take the time to tell her. Her favorite Kenny Holman, the musician, came over and played several songs on the piccolo for her as well. It's the little things that mean so very much.

I was asked to be on a team of Doctor’s and Nurses at Children’s Hospital to come up with a plan to better serve critically ill kids like Maddie. We had our first meeting last week to develop our patient centered vision and project plan. It was really fun and as silly as this might sound, comforting to hear how our vision for customer centric care intersects. It felt great to be listened to and valued for my contributions. We shared frustrations, ideas for change, and visions for the future treatment of our kids. These docs get it…and they want to be partners in care and for the cure, as do all of the Doctors and Nurses we have worked with at Fairview. My greatest hope is that this team can make the difference needed to change the face of pediatric health care in the minds of their management team and that what we accomplish here will be a past practice shared all over the country.

Thursday, July 22, 2004 5:24 PM CDT

The deck is stained and varnished, the boxes for a garage sale are piling up, Cindy and Jenny are visiting again, Maddie is in excellent spirits, Mikaylah is learning to golf and the best news of all, Wyatt is home for a week! I picked him up from the airport yesterday and the girls were on pins and needles until he arrived safely at our house. They adore him and the feeling is mutual as he patiently listens to all he has missed, and looks at all the “stuff” he hasn’t seen yet. It truly is a beautiful site to see and hear the three of them together. The power of sibling love is infectious and should never be trivialized. It is a medicine for the heart and soul that cannot be manufactured.

The weather in Minnisocold has been in the high 80’s and 90’s all week; one would never believe winter could be so cold here. We have been busy with Bible School, golf, swimming, (some of us still have to work) and most importantly lots of laughter! We have many plans for the rest of the family visit and will keep you informed of all the fun you are missing.

Maddie is still not eating, but my hope is that Wyatt will be the answer to that. I am looking in to a new med I have heard of recently that increases appetite cyproheptadine. I have spoken to Dr. Peters and hope to get a trial script this week to start that. If anyone out there has heard of anyone utilizing that for increasing the appetite, please let me know. It is actually an antihistamine.
I have also heard of two other MLD kids that have had gall bladder problems which has played a part in their loss of appetite, so I have a call in to our Docs to see if we should check out that possibility as well. Keep the prayers coming and thank you for those we’ve already felt!

Tuesday, July 6, 2004 2:27 PM CDT

Do your kids have school and play clothes? Do you buy beautiful, scented candles and save them for a special occasion? Yes, WAS the answer for me on both questions? Maddie was sitting on the floor taking off her braces (AFO’S) on Friday after her surgery, and in her angelic little voice said, “It really isn’t fair that I can’t walk like you and Mikaylah! Can Jesus fix that?” After wiping the tears from my eyes, and trying to figure out exactly how to answer, I quietly said, “He and the rest of his team are working on it!”

The rest of the weekend I was in some sort of funk, and for reasons I don’t quite understand I thought of the two questions above and realized now how foolish a YES seems to me now. Maybe it’s because everyday is a special occasion now, and I should celebrate the fact that I can walk and feed myself. Out of the mouth of babes…this babe has changed my life for the better!

The Hickman was removed on Friday, it went deeper than the surgeon thought, but he took the stitches out a couple months ago and since I believe the docs at Fairview put in to keep the cuff close to the surface he probably shouldn't have. But she did very well, and anticipates swimming for the first time in 4 years or more this week. She actually wore her “vikini” to the pre-op physical on Thursday to let the docs there know she meant business! WE must cover the G/J tube carefully as water getting in there is like swallowing water.

She stood with my help on Sunday at church and was doing a little dance to the music by her very favorite musician, Kenny. Despite the fact that he was busy playing, he didn’t miss it, and was quick to give her a congratulatory hug after the service.

Add Doreen Krantiz to your prayer lists, as she will be in surgery on Wednesday for ovarian cancer. She is one of our very favorite nurses!

Wednesday, June 23, 2004 2:13 PM CDT

We have new casts – purple and pink this time. She is not eating again; I wish I knew the answer to that mystery! If you could only see me do the bacon dance, I am sure YOU would eat, but she makes me do the dance, laughs, and then won’t even open her mouth. Bam…now I am no Emeril, but I fix or buy already prepared anything she requests, but it’s as if the she loses her appetite once it is placed before her. Mary, bless her heart, tries to get her to eat unidentifiable Asian food to no avail either…that makes a little more sense to me. I am switching the pump from J to G port off and on all day hoping that if her stomach gets used to being full and empty that might make a difference. Pray for that, will you! (The power of prayer – I didn’t even post this yet, and you guys were already praying – at midnight she ask for Cheese crackers and milk – she at 10! Go figure!)

Surgery is scheduled for July 2nd to remove her single lumen Hickman. The good news is that once removed, and the casts are off, we can cover the G/J port and she can go swimming! She is so excited about that. The community center is right down the street and it has a great pool complete with a curvy slide that Mikaylah loves. The aquatic therapy will be excellent for her physically as well.

Mikaylah is taking golf lessons. She really likes it. I am not sure if it is golf itself or the nature that is all around her on the course. At any rate, Kristina’s takes her daughter and ask if Mikaylah could join them every Tuesday morning.

Aunt Cindy, Jen and Wyatt have booked their dates at the Lang B&B this summer. It is the only Inn in MN.with authentic Asian food, a German man of the house, and Irish drinking songs playing daily. The pool and hot tub are minutes away, and the mosquito population has been reduced by the millions to date. Book now or later, we will always have room for you…We’ll keep the light on!

Tuesday, June 8, 2004 11:01 AM CDT

SHE IS EATING! No rhyme or reason that I can see. I experimented with the tube feeding times and volumes, Kelli one of her favorite nurses is back, the rain has stopped, and we are feeding her utilizing the team method, (I feed her for awhile, then Mary takes over, then Mikaylah takes over) pick one. Whatever it is, I love it! She ate ¾ of a hotdog (no bun) at the International Children’s Festival, and yesterday at school she ate 1 whole lunchable pizza. Sunday after church as I was searching for something to cook, I heard her little voice say, “Mom, I am starving out here, when are we going to eat?”

Vomiting and gagging is a lot less these last 4 days as well. We discussed what to do next at her doctor’s appointment, but maybe the problem is solved for now. She weighs 34.3 pounds now. The eye doctor decided not to do surgery on her cataracts yet, as he doesn’t think there has been much change from October. He is also worried about her constant itching of the eyes that would be a bad thing after surgery. He decided to try eye drop antibiotics to see if perhaps she has an allergy or infection first. He will consult with colleagues and see her again in October before making a surgery decision. Her orthopedic appointment went well, no Botox, but stretching and the serial casting again. I had to fly to Texas for work, so dental appointment was cancelled until next week.

IEP is ready to be signed for her schooling this summer and next fall. I just need to make sure we have the speech therapy required to help her learn to swallow saliva and not take in so much air. They will have a computer with modified keyboard and she is all excited about that! She will also have a Para, a teacher’s aide assigned to her!

Mikaylah is anxious for summer vacation to begin, school ends here on Wednesday. A mother bird built a nest in one of my hanging flowerpots and she has been busy watching the egg to baby bird process. I hope to find a day camp for a week or so for her this summer. I am searching for an art camp. We hope to have many visitors this summer (hint – hint), so she will be very busy.

I am meeting with someone from Children’s Hospital to discuss a process issue that is not very customer centric. I am so shy about sharing my opinion, NOT, so they took me up on my offer to help change it. I am looking forward to it.

Tuesday, June 1, 2004 11:47 AM CDT

It has been a busy few weeks here. We went to the GE Fleet Services picnic recently, but inclimate weather forced us inside. So we snuck off to see Shrek 2, and came back to the picnic just in time for the Twins game (we didn’t cheer much Cleveland, I promise). The twins mascot found us all the way up in the upper deck and came up for a personal welcome to Maddie and Mikaylah, needless to say they were thrilled!

We’ve been painting and varnishing lawn furniture, but it has rained so much we can’t even go out long enough to sit on it! Bev Martin and her family came over Monday for an indoors picnic. While Bev and I attacked the unpacked boxes in the basement, Scrooge took all the kids fishing. Maddie was the basement supervisor and Mary silently unpacked boxes wondering how in the world we acquired so much stuff. If it ever stops raining, I intend to have a huge garage sale in a few weeks.

Maddie and Mikaylah have had the stomach virus for the last several days. It’s a big deal to Mikay since she is rarely sick, but Maddie, the seasoned veteran, takes it all in stride. They made up songs and jokes all weekend about the whole experience. The serious side is that I have to worry about dehydration for Maddie, so the docs put her on Augementin right away, and slowed the tube feedings and changed the content to half pedyialyte and formula.

We have another busy week a head as we visit the Botox doc, the dentist, and the eye doctor. If the retching and stomach issues continue for her, we will stop in to see our regular peds guys as well. Stay tuned…

Rob and Ria Prange, our freinds from Amsterdam, had a beautiful 9 pound baby boy and they named him Jereon Ronald. He looks like Rick, family is thrilled as you might well imagine.

Wednesday, May 19, 2004 2:01 PM CDT

It was a busy, but rewarding week. I attended the World Lysosomal Disease Conference held in MN. on Friday and Saturday. Doctors from the entire world came to speak about the family of diseases that MLD and Hurlers is apart of. The conference was very informative; of course many presentations were way, way over my head. The fact that these docs took time out of their busy schedules, to come, share and listen to one another is a huge benefit to all. On Saturday the topics were tailored to the needs of the families and one had to count their blessings as family after family opened up their hearts and shared their stories, their frustrations, and their heartache. It was a form of validation I think to be able to voice the above in the presence of our doctors knowing they were there to share our burden. I feel fortunate each and every day to have our team of brilliant doctors working hard for us professionally as well as personally. There is something about them knowing her name and history that makes me believe they will go the extra mile everyday to save her.

I learned so much about the law for handicapped kids (IDEA) and I soaked up all I could regarding the IEP that is designed/updated each year for Maddie’s education. Thank you to Dr. Kendra and her friend Mary Jo, I also learned how to ask for what Maddie is eligible for to enable her to maintain and grow in the education system. I learned about adaptive equipment, and have asked for an adaptive keyboard so Maddie can learn to type (her tremors prevent her from writing legibly). I am lucky that I have been blessed with wonderful teachers, OT, PT and a phenomenal principal here, some of the other parents aren't as fortunate.

Maddie is utilizing her electric wheel chair at school now and her class loves it.
It weighs about 750 pounds, so I struggle a bit getting it in and out of the house and van, but the smile on her face and the sound of her little horn make it all worth it. The speed is set very, very slow right now (obviously they underestimated her determination to get from one place to another). I can jog faster than she can drive (since jogging is not my forte, you get my drift)!

Mikaylah and I are teaching Mary how to use her new email address. Mary continues her morning routine with Mikaylah, who so many times gets lost in the shuffle. Mary runs her through the breakfast, teeth brush, out the door, etc. process with the precision of a drill sergeant. When complete, the two Asian comrades, with Alvin in tow, head to the bus stop, come rain or come shine!

Monday, May 10, 2004 5:54 PM CDT

As a child I dreamed of becoming the mother of 13 kids. I have no idea where that number came from, but I do remember when I had numerous female difficulties, that I told my doctor he needed to hurry and fix the plumbing because it was hampering my goal attainment. Since I wasn’t married the first time I mentioned it, I am not sure he took me seriously. As the years went by, and Wyatt was born, I know he believed me because he used to tell me to "be more productive" every chance he got!

Motherhood is not about how many you have I’ve learned, but more about the love you have for your children, and the life you provide for the ones you have been blessed with. To me it is a role I love playing more than any other, but it is bittersweet, as all loving Moms know. I have learned that lesson well this last 5 years. The heartache of watching Maddie go through more pain, physical change, and tribulation than seems humanly possible is a part of Motherhood I never knew existed. It is the only part I wish I had the power to change. To kiss a scraped knee, or soothe a broken heart pales in comparison to answering the question, “Will I ever get well? Or “Am I going to die too?” No one can prepare you for that angst. As Maddie lay in my arms fast asleep on Saturday night, I dreamed that the little feet I loved to tickle weren’t bent in an obscene manner. I dreamed that her body and legs weren’t so rigid and that she didn’t need my help to just sit up. I wished that as all the other kids played under the sprinkler today, she could have jumped out of the stroller and joined in the fun. I wish she were well. And I wish all Mother’s Day dreams, and wishes could come true!

I love all three of my kids more than life itself, and all of my fondest memories include them! I don’t know what to say about my goal of long ago, but I do know that I am a better person, and a better mother for having the three wonderful children I do have. On this Mother’s Day, join me in appreciating the wonder of our children and rejoice in the best occupation there is…MOTHERHOOD!

Tuesday, May 4, 2004 1:52 PM CDT

We are home again…and mighty glad of it! We are only on three drugs as of this entry. Tube feedings continue 24/7, alternating between G and J tube. She is hungry, and frequently asks for food. Most common request is “salad” with her dressing on the side for dipping (not exactly calorie laden! If only I could learn from her!) The disheartening thing is that she continues to vomit. She retches, but it is phlegm and saliva that come up most of the time. I called the GI doc and he seems to think that things will settle down in a week or so, easy for him to say, he isn’t throwing up all the time or her Mom. I really think that means, “I don’t know what to expect”! It is almost as if she gets to full and her stomach is trying to tell her that. What do I know?!

Her spirits are great, she was so glad to get out of that “boring” place. She needed a manicure, a dress and a pair of tights for her first day back to school on Monday (Happy Birthday Uncle Jame!). She was so excited to see her classmates and her favorite bus driver Dan.

Meanwhile, it’s tons of mail for me to open, dust a mile high, you know back to the old routine.
Mary is settling in just fine, and now has the task of getting Mikaylah up and out the door in the morning, and make sure her homework is down each night.

Aunt Cindy is gone for now, and we miss the fits of laughter, but we know she will be back!

Tuesday, April 27, 2004 4:38 PM CDT

She is asking for a Manacure…that means she is feeling better. Her “boy nurse”, her handsome young doctor in reality, told her she really needed one, so she has been exercising her pitiful begging voice to get it done. She teases him because he is not Dr. Peters.

They have removed her drainage tube, and they have been alternating her feeds now in G and J tube. They started with Pedialyte and half strength formula at slow speeds to check her tolerance. So far so good. They will try real food by mouth this afternoon and hopefully if all goes well she will be released tomorrow. AMEN. They believe this Nisson will be the answer to our pneumonia problems once and for all. WE are all thrilled about that. She has only lost about a pound and a half, a lot for her, but we will work to quickly make that up once we are home.

My cousin Cindy has been utilizing her teaching skills at the hospital to help Mary with her English. It is to cute to watch the two of them, heads together, working through the English work book she bought for her. When Mary was here, almost 3 years ago, I found a Chinese speaking young woman to help us communicate. Her name was Ying and she worked at 3M. I actually located her through and organization I belonged to in Maine - CAFAM. She became a good, very helpful friend. Mary contacted her the other day, and she came to see us at the hospital. Imagine my surprise when she told me that she has foloowed this web site ever since she met us. She even guessed the color of Maddie's casts once. How lucky we have been on this long journay to have meet so many wonderful people. (Did I mention she brought delicious Chinese Bakery to the hospital!) I also learned that 2 other Chinese folks MAry met at English school, corresponded with Mary, and visited her in China when they returned. It is a smaller world than we think!

Poor Mikaylah, she never knows where to go after school as we juggle the hospital overnights, and school pick ups. Life is never dull at the Lang house, and you know what, we probably wouldn’t know what to do if it was! Thanks Kristina for always being there, I thank God very day for that day you walked into our lives!

Alvin, we miss you too! Thanks Mary!

Friday, April 23, 2004 10:46 AM CDT

She had another very rough night and is complaining of a sore throat (drainage tube is still in), sore neck and tummy. She is not allowed anything orally or by G/J tube. Meds are given through the Hickman, or rectally, which is not her idea of fun. She tries to sleep but wakes frequently because of her discomfort. Pumps beeping, docs and nurses coming and going, make it difficult for her to relax as well. She never complains of pain so when she does I know that it really is painful for her. They have asked to give her morphine, but she had an adverse reaction at Fairview so I am hesitant to do that. I am calling Fairview to check other things we have tried for pain that have been successful. If only the two hospitals were one, or that their records were computerized.

She did ask to eat numerous times last night, and it broke my heart to tell her she still was not able to do so. Hopefully in the near future that will change. They just weighed her this morning and I am hoping that she has not lost the precious weight we gained over the last couple months.

Reinforcements have arrived! My good friend Kristina has been keeping Mikaylah, and sharing Alvin duty with some of my other neighbors, now Mary Sticha has Alvin, and my cousin flew in from Philadelphia to take turns with Mary and I at the hospital. Thank you everyone, we could not do this without all of you! Keep the prayers and well wishes coming!

Friday, April 23, 2004 10:46 AM CDT

Friday, April 23, 2004 9:46 AM CDT

She had another very rough night and is complaining of a sore throat (drainage tube is still in), sore neck and tummy. She is not allowed anything orally or by G/J tube. Meds are given through the Hickman, or rectally, which is not her idea of fun. She tries to sleep but wakes frequently because of her discomfort. Pumps beeping, docs and nurses coming and going, make it difficult for her to relax as well. She never complains of pain so when she does I know that it really is painful for her. They have asked to give her morphine, but she had an adverse reaction at Fairview so I am hesitant to do that. I am calling Fairview to check other things we have tried for pain that have been successful. If only the two hospitals were one, or that they at least had their records computerized.

She did ask to eat numerous times last night, and it broke my heart to tell her she still was not able to do so. Hopefully in the near future that will change. They just weighed her this morning and I am hoping that she has not lost the precious weight we gained over the last couple months.

Reinforcements have arrived! My good friend Kristina has been keeping Mikaylah, and sharing Alvin duty with some of my other neighbors, now Mary Sticha has Alvin, and my cousin flew in from Philadelphia to take turns with Mary and I at the hospital. Thank you everyone, we could not do this without the love and support of all of you! Keep the prayers and well wishes coming!

Thursday, April 22, 2004 9:26 AM CDT

We are still in the hospital. After many conferences with docs, including one with Dr. Peters, it was decided to go ahead with the Nisson to prevent the Aspiration pneumonias. I decided against removing her central line, since we have no way of knowing if she will need TPN after surgery. The other reason is that her little veins have had enough, and the Central line/Hickman can be used for blood draws eliminating the need for another stick. The surgery was a 3-hour procedure where they tie up the stomach near the esophagus to prevent the retching she does from coming back up the esophagus and back into the lung causing the pneumonias. She doesn’t have the strength to clear it from her airways.

The surgery went well. She has a 7-8 inch incision in the middle of her belly, and a drainage tube in her nose draining everything from the stomach. She is getting no feeds only a saline drip. Nothing is permitted by mouth or through the G/J tube for several days,including meds. Good thing I saved the Hickman as meds are going through that. She had a terrible night as the retching DID NOT stop yet, and at one point she had vomited 20 times in an hour. She would try to sleep and her little body would be jarred awake by the violent episodes. The Docs on call said it was due to the swelling of the esophagus and tightening of the stomach itself. They assure me that this will subside. The anti-vomiting meds were not working. We tried a new one at 3:30 am, Decatron; it finally slowed things down but hasn’t eliminated the problem yet.

We will be here for at least 5-7 more days. I will try to post often.

Wednesday, April 14, 2004 5:04 PM CDT

For any of my liberal friends who may have heard me on NPR, NO I HAVE NOT BECOME A DEMOCRAT! I actually was asked to testify in support of a bill introduced by 2 Democrats on Stem Cell Research and a 10 second sound bite was replayed on that radio station. I sought the Senators out when I heard about the bill they wrote in favor of stem cell research using public and private funds. As you faithful supporters of ours know, stem cell research will be the answer for kids like Maddie, for Parkinson’s, for heart attack victims, for those with Diabetes, etc. The Senators needed a dose of reality, as this should not be a political issue, but one about finding a cure for thousands of people that are suffering every single day. I was scared to death to appear in the WATERGATE like setting, between two Democrats, speaking from the heart to a group that could control the destiny about my daughter. Despite the quaking in my voice, and the shaking of my knees, I was told that the powerful message hit the mark by painting a picture that many have not yet seen. I have to tell you that I truly believe I was not there alone; God gave me the words and the courage to speak them in a manner that they would truly be heard. I felt the presence of all the little angels I have known and loved in these last 4 years looking down and saying, “You go girl!” and that I did.

I have been contacted to speak again, and will be raising funds for the Stem Cell Institute here in the very near future. I met with a member of their PR team on Monday, and am going to a public meeting at the University tonight to hear how else I can get involved. If you want to get involved in your location, I have tons of detailed, informative, literature that will help you put things in perspective.

The winner of the “First Relative Visitor to Our MN. Home” was my favorite cousin Cin and her daughter Jen! There was never any doubt that we would have a good time, we always do. WE laugh until our sides split or one of us wets our pants (and we are far to old for that these days). It was best captured in a comment Mikaylah made to Jen, “ Don’t they embarrass you when they laugh so loud and spit their food?” Jen said, “Get used to it, Wyatt and I had to live with it for 20 some years, they are just having fun!” It felt so good to talk about old times, family adventures when we were kids, and to just laugh about nothing at all!

The Easter Bunny was gracious as always as he helped the neighbor orchestrate an egg hunt
For all the kids on the street on Saturday. Bunny even had a special gigantic egg for Maddie. My friend Mary came in from China to spend time with us. We spent a beautiful Easter Sunday on a farm with Doreen (one of our nurses) and her family. We shared a delicious meal, and I had a ball watching Mikaylah play with the cows, chickens, cats, and roll around in the haymow like I did so many years ago on my grandparent’s farm. It was a great day.

Monday morning before I left for work Maddie through up, aspirated, and I ended up rushing her to Children’s Hospital where we were admitted. She has upper lobe pneumonia, and her G/J tube had 3 times the air and water it should have in it. They fixed that; have her on IV antibiotics, and nebs on regular intervals. She is still throwing up, so they have slowed/stopped the tube feeds and have a pulmonary doc coming in on Thursday. Mary, Mike and I take turns at the hospital. She has no fever which I am very thankful for. She told the docs today that she “was bored in this place!” What a kid!

Friday, March 26, 2004 2:02 PM CST

I won’t say this very loud, but I think spring has sprung in Minnesocold! It is sunny and over 60 today, and it’s Friday! Donna Nadeau and the kids are coming for the weekend, just received word from Boston that my friend Mary in China, got a Visa and will soon be arriving to help out, and best of all, Maddie got her casts off last week and walked this week! Prayers answered!

She is gaining weight, (30 calories an once formula is like a miracle) and strength daily. Her braces are back on and she begs to walk numerous times a day! We assist her efforts with the walker and hands guiding her every movement, but she alone lifts those tiny little legs and makes them go where she wants them to. She compensates for the scissoring of her feet, by using her hand to pick the leg up, or one foot to push the other in place. Last Saturday night, my neighbor and I honored her request to try the stairs, she did 5 steps (hasn’t been able to do that in over two years),which is so difficult as she has to lift the leg step height by herself and then bear weight on it which she hasn’t been able to do for some time. She also is asking again to sit on the potty and this last week goes more on it than in her diaper. She also will sit on the edge of the couch, use her arms to push up and then stand. She is very shaky, depending on the day, and if she leans to far forward takes the “digger”! But that does not stop her from trying it again.

We went to church on Sunday, and as always had to sit in the front row so she can see and hear the music being played. One of our favorite musicians, saw her avidly admiring his work, and came down and played the Sax just for her, she said, “Kenny G”. He said no, but that his name was also Kenny. He was marvelous.

Mikaylah has become quite the artist these days; her art teacher says she truly has a gift. One of our nurses said she wants to make a copy of some of the Disney characters for sick kids she visits to color. Mikaylah protests that they aren’t good enough, but she beams from ear to ear!

I want to tell you about a Leukodystrophy Fellowship that my friends, that have three children with MLD, same as Maddie, have started. Here is the link to their site, as they can explain the program so much better than I can. (www.caringbridge.org/mi/trimpermld or call 989-831-5187) I must add that by supporting this fellowship kids like ours will have a chance to beat this horrific, debilitating disease. This fund will pay for 2 doctors to concentrate on nothing but research and development for this disease! As a partner for the cure, you will receive updates on their progress. Doctors believe that we are not far away from the cure/and a way to remylenate, or fix the damage already done to Maddie’s little nervous system. The return on your investment is LIFE, can’t get any better than that!

Tuesday, March 16, 2004 11:34 AM CST

In 1998, I met Huang AO, Madigan, for the very first time. She had her hair in two ponytails, and she was crying as the Chinese government took her out of the arms of her foster Mom. I cradled her in my arms to calm her fears and she soon fell asleep. I knew then as I knew in 1995 when I met Mikaylah that this was my daughter and that we were chosen for one another. She had red streaks in her hair, and the government officials spoke and pointed at us together, and while I did not understand Chinese, I knew they were saying the very same thing.

Today is Maddie’s 7th birthday, and I remember how we celebrated each and every one! I am a different person, a better one, than I was when we celebrated that first one together. I have grown in a direction I never thought I could. I have learned the true meaning of life, and the importance of living it LARGE! I will never be able to adequately explain what it is like to love someone as much as I do all of my kids, and to watch one have to endure so much. I can however tell you that I have been truly blessed by her mere existence. Her famous laughter, amidst the pain and frustration is like music to my soul. When laughter comes from one that endures so much, it seems to mean so much more. When she honors us with her singing I am in the front row of her audience begging for an encore. She never complains, and she never expects anything. She delights in the small things and never wallows in self-pity. She is wise well beyond her 7 years; we can all learn so much from special kids like her.

Today she is 7, it won’t be long and she will be 17! I will have new worries then, and I imagine I will cradle her and calm her fears then as I do now and did that very first day. I am sure that is my role, and one that I accept with love and gratitude. I will always celebrate the day she was born, in another country, just for me!

Celebrate life today, for it is a precious gift, and say a special prayer for Maddie and all of the kids like Maddie that struggle from one birthday to the next!

HAPPY BIRTHDAY MADDIE! I LOVE YOU!

Mom

Tuesday, March 2, 2004 6:20 PM CST

Maddie has been doing very well on the new NeoCate Plus formula (30 calories an oz.) She is so much stronger, her face is fuller and I even see definition in her little arms. We spend every waking minute trying to get her to eat, or thinking of games to make the experience more fun. Believe it or not, I even acted like her favorite breakfast food Sunday morning, as I wiggled around on the floor like a piece of bacon cooking in a skillet. Ridiculous as I must have looked, (Mike, filmed it I understand, that’s a movie I don’t ever want to see) it worked; she ate one half a piece. You should see how I do the Pizza dance, on second thought; maybe you’d rather not.

I have a spell of cellulites in my leg and I think stomach flu, so we ended up in the ER for me on Friday night and then on Saturday morning, she spiked a fever, and started vomiting profusely,so we ened up in the ER for her on Saturday. Her breathing slowed, though not as dangerously, as the last time and she appeared to become lethargic in a matter of minutes. So, the EMS came again and we were off to Children’s Hospital. They gave her nebs, IV fluids and antibiotics and kept us over night. They agreed the feeding tube must be in the wrong place once they witnessed the formula coming up when in reality if tube was correctly placed it by passes stomach. So on Sunday morning they replaced it again, and then kept us most of the day to be sure the feeds were working well. She was back to her old self again, laughing that infectious laugh, and telling her never funny knock-knock jokes. So home again we went. She ate Kelly’s delicious green beans and bacon, and bites of pork. And then…

She started throwing up again during the night and continued through last night. At 4 am when her GI doc called, we decided to hook up the Pedilyite and try that before driving back to the hospital. So, I did, and she has been doing well again today. Once again she asked for food, and ate everything she ask for. So, maybe she just has that nasty stomach flu. Doc has been talking doing a Nissin to stop the vomiting, but none of us want to rush to surgery. Pray that we don’t have to.

Mikaylah has been into Totem Poles for months. She reads books well above her age level about them, and draws beautiful pictures remarkably lifelike. The only thing she ask for this Christmas was a real one to put in our front yard…wonder what our neighbors would think…A Chinese Totem Pole, hummm! Well, her beloved babysitter Diane, from Maine, found a pattern for a sweater with a totem pole on the front and back and made it for her. Did you hear her scream of delight when she opened the box last night; she about broke our eardrums! The attached note about being such a good big sister was as beautiful as the gift…thanks again Di.

Casts off tomorrow and then back on tomorrow…Guess what color she will choose?

Wednesday, February 18, 2004 4:24 PM CST

We met with Dr. Peters on 2-12 and it was obvious by his demeanor that he was very happy with all of our test results. There was levity in the room as he asks ME to dig into my notes and tell him how the week of testing went. Dr. Charnas was impressed with her ability to stand and noticed her increased strength (funny how much keeping a healthy formula down helps). Since I once again butted heads with the neuro-psy folks (great folks, but just don’t get that measuring kids like Maddie on the same scale as healthy kids is not a true reflection of how smart they are) I have no report yet. They ask ridiculous questions, I.E. “What do you put on your food to make it taste better?” Since she doesn’t eat, and can’t feed herself very well, I find that insensitive as well as ignorant! I ended the session and ask her to come back next day to just talk to her, and LISTEN to the beauty of her words. Ask her questions about her hospital stays, her doctors, check her knowledge of colors and numbers with examples from the environment she has spent 80% of her last 4 years in! I ask Maddie to tell them about an adult movie we watched recently and during her story she mentioned that she thought the main characters were “twitter patted”, the questioner with a confused look on her face, ask me what that meant…obviously she never saw that part in the movie Bambi years ago…wonder if she loses points on her Psy. test? I will check back with them this week, if they’ll take my call, to see how they thought that went.

2-18-04 - Tube feedings are still going very well, and the great news...HOT off of the scales today is…SHE WEIGHS 33.4 POUNDS! Our prayers have been answered and this is a record! She is also 104 centimeters tall, you have to figure that out in inches, but the good news is they are not going to put her on growth factor!! She falls in the low to normal range for Asian kids.

We went to see our favorite Botox doctor today, Dr. Gormley. He repeated the Botox injections in both legs, and decided to do the serial casting again. She doesn’t seem to mind the casting part; the injections are a different story, although they do have a new drug like EMLA, but faster acting to numb the area. It does not how ever stop the pain as the medicine goes in. She never ceases to amaze me, I would be begging for them to stop if it were I. She has such strength and grace. She chooses purple with orange stripes for her left cast and the opposite for the right! She chose purple and pink toe boots that made her the fashion diva in the office!

The girls got Valentines from several folks, and once again I thank you all for remembering. They also got a very special Valentine from our favorite Dr. Peters that was beautiful inside and out. How lucky we are to have him in our lives!

Please keep my special friends Amanda and Chris Smith in your hearts and prayers every day as their 2nd child, Cade, suffers through the same horrific disease that their first born died from. They both are loving, dedicated, self-sacrificing parents, and role models in all that they do and are!

Wednesday, February 4, 2004 9:14 PM CST

Sundays seem to be tough for us, perhaps it is because God is in such high demand then, and we need to test him to see if he can hear us when so many others are demanding attention. I had to place my first 911call for help last Sunday (1-25). Maddie had been congested and she was on albuterol nebs every four hours, but this time what broke lose she could not expel. It lodged in her windpipe and she was aspirating, unable to catch a good breath. The EMS came, her sats were low, and she needed oxygen to maintain. They quickly loaded her and I on a stretcher and started the long ride to the hospital. We tried to make it to Fairview, but she was in real trouble so we had to divert to Children’s Hospital, which was closer. I have never been more scared in my life! She was barely moving and looked as scared as I felt!

Once in the ER, I felt more comfortable as I saw the team there spring into action. I even recognized doctors that had done a stint at Fairview when we were there. Once she was stable for a few hours, I had to make the decision to move her to Fairview or stay. I decided to stay, as it was quite apparent that this was a special place for children and children with acute conditions like Maddie’s were commonplace. (Sure hope my insurance can handle it – I didn’t even bother to check!) A long story short, new doctors familiar with G/J tubes, aspirations, crackly chests and kids with rare diseases started to work magic. By Thursday she was off TPN for a trial run and on a brand new formula through the G/J tube. It worked! They started off slow and she is now up to 50 CC’s (highest rate/volume she has ever been at) an hour for 24 hours with no vomiting! AMEN! She is getting a slight appetite back and is eating the dandiest things…Salmon, fish sandwiches from Mickey D’s, and Jamba juice are her frequent requests. She finally passed the 28-pound plateau and is now at 31.6 pounds (most she has ever weighed)!

She was hospitalized until Saturday. I had to leave for work, but the doctor’s assured me she was in the safest place possible. It was a decision I wrestled with, and sought help in making as I have never been away from her for more than one night. It is difficult to focus on work when your heart and soul is with your child…if only we could all be born rich! Once again, our many friends stepped up to help, Mike, Kristina, Bev, and so many more. Many stopped by to visit and cheer her on, folks from RMH, and a couple docs from Fairview, a child life specialist from Fairview…and all the nurses from Children’s that were quickly smitten and did extra duty to help us out. Thank you all!

More excitement on SUNDAY, 2-1, as I woke to give her a 5:00 am med, I noticed her G/J tube was pulled out of her stomach and milk was spewing in the bed! Thank heavens I had checked her at 3:00 and things were intact, or she may have floated into my room. Another rush to the ER to have the tube replaced!

Monday started our 2-year BMT follow-up appts. at Fairview. Four full days of tests, from MRI’s, blood counts, brace checks, neuropsych testing, eye exams and many more. Her counts continue to look good, and feeds are still going well. They have discovered that she has cataracts, the right being worse than the left. They believe it inhibits her vision and will watch for 2 months and then most likely schedule surgery. She knocked the socks off of all the folks in radiology today as she did her MRI with NO SEDATION! They didn’t believe me when I said she could do it, and said they have never had someone that young ever manage it! Marvelous Maddie strikes again. Last day of testing and evals tomorrow, I will update over the weekend!

Thursday, January 15, 2004 10:51 PM CST

It is a promising new year! We are not in the hospital and the casts are off again. I have taken in a border, (sent by God, I am sure of it!) to help offset financial obligations. I have to pinch myself to believe the numerous benefits that are a result of this. I have a new, internal support person there to have adult conversation with, to run to the store, to love my girls, to stay an extra few minutes when I am late, to walk the dog, spends time with Mikaylah… I guess I feel guilty charging them rent! It is so wonderful. I actually took my first bubble bath in 3 years, filled the tub with 5 different smelly things; water to my neck, good music, and a great book…ain’t life grand! Thank you Lord!!!

We had another nightmare tube plugging, but have now convinced them to write me a script for something that I can try before rushing to the hospital. The casts came off; new butterfly braces have been made and work very well. She has walked with the walker, with assistance, and stands in the standard at school several minutes a day. She appears to be gaining weight, but have no home scale to verify and since we haven’t been to a doc for a record number of days…who cares about weight, right?

The van is currently being retrofit for the lift. Hopefully it will be done very soon as the one I am borrowing has to be returned tonight. Walking to work in MinnesoCOLD does not excite me! They have taken pictures as they went through the retrofit process and it is really an interesting process. The girls just want it back as they miss the DVD player…I remember when I just wanted to own a car with air conditioning!

We had a speech therapist appt. last week with Maddie’s favorite bubble eating Jim. Her hadn’t seen her since early in the year, and he was amazed at her progress. She remembered him immediately and gave him the sign language L sign for loser. She beat him in Candy Land and every bicycle race they ever had when she was in the hospital. He was impressed with the way she compensated for her diminished lung capacity by taking several big breaths during her words. He said it is very hard to teach kids to do that. Physical therapy and singing can help he lung capacity, we love to sing so we are working at it.

Diana Dowd, a wonderful, thoughtful caring individual whom I have never met from Maine, added to our Christmas delight with very appropriate gifts amazingly suited to both girls favorite things. They loved them all. She gave me the most beautiful gift of all which was watching the joy on their faces as they play with them each and every day. I can never adequately describe the feeling I have as I watch Maddie, despite all of her handicaps, especially the tremors master putting together a puzzle all by herself. Think about the very first day you saw your baby and reveled in the miracle of it all, that about captures the feeling I experience when my precious little Maddie accomplishes something so many of us take for granted!

I had the picture above taken in September this year when Wyatt came home for a visit. What a lucky Mom I am to have three such awesome kids! Obviously, they adore each other!

Thursday, January 15, 2004 10:43 PM CST

It is a promising new year! We are not in the hospital and the casts are off again. I have taken in a border, (sent by God, I am sure of it!) to help offset financial obligations. I have to pinch myself to believe the numerous benefits that are a result of this decision. I have a new, internal support person to have adult conversation with, to run to the store, to love my girls, to stay an extra few minutes when I am late getting home from work, to walk the dog, spend time with Mikaylah, and just kind of pick up the slack. It makes me feel guilty charging him rent! It is so wonderful. I actually was able to take my first bubble bath in 3 years while he kept an eye on the girls! I filled the tub with 5 different lotions; added water to my chin, good music, and a great book! And then when I got out, dinner was ready and waiting...ain’t life grand! Thank you Lord!!!

We had another nightmare tube plugging, but have now convinced them to write me a script for something that I can try before rushing her to the hospital. The casts came off; new butterfly braces have been made and work very well. She has walked with the walker, with assistance, and stands in the standard at school several minutes a day. She appears to be gaining weight, but have no home scale to verify and since we haven’t been to a doc for a record number of days…who cares about weight, right?

The van is currently being retrofit for the lift. Hopefully it will be done very soon as the one I am borrowing has to be returned tonight. Walking to work in MinnesoCOLD does not excite me! They have taken pictures as they went through the retrofit process and it is really an interesting process. The girls just want it back as they miss the DVD player…I remember when I just wanted to own a car with air conditioning!

We had a speech therapist appt. last week with Maddie’s favorite bubble eating Jim. Her hadn’t seen her since early in the year, and he was amazed at her progress. She remembered him immediately and gave him the sign language L sign for loser. She beat him in Candy Land and every bicycle race they ever had when she was in the hospital. He was impressed with the way she compensated for her diminished lung capacity by taking several big breaths during her words. He said it is very hard to teach kids to do that. Physical therapy and singing can help he lung capacity, we love to sing so we are working at it.

Diana Dowd, a wonderful, thoughtful caring individual whom I have never met from Maine, added to our Christmas delight with very appropriate gifts amazingly suited to both girls favorite things. They loved them all. She gave me the most beautiful gift of all which was watching the joy on their faces as they play with them each and every day. I can never adequately describe the feeling I have as I watch Maddie, despite all of her handicaps, especially the tremors master putting together a puzzle all by herself. Think about the very first day you saw your baby and reveled in the miracle of it all, that about captures the feeling I experience when my precious little Maddie accomplishes something so many of us take for granted!

I had the picture above taken in September this year when Wyatt came home for a visit. What a lucky Mom I am to have three such awesome kids! Obviously, they adore each other!

Saturday, December 27, 2003 2:13 AM CST

Our bags were packed by the doorway with care, in hopes that in Seattle we would soon be there…unfortunately we didn’t make it!

I took Maddie to the emergency room in the middle of the night Tuesday night because she was vomiting a little, had a low grade fever, and was wheezing a bit. They gave her a flu shot, a couple new meds, and sent us home at 3:30am. I went to work the next day, but kept her out of school. Thursday when I came home from work she had a low grade temp, wheezing was worse, and appetite was less than less (she gets less than 30 % of her calories lately from real food). I took her temp at 1:00 am praying that all was well as we all were so ready for a vacation, especially knowing that we would be with Wyatt. Temp was 102, so again I made the 35 mile trip in to the ER. I talked to the BMT doc on the way in and knew we would be staying. I didn’t have the heart to tell her as the girls had a Wyatt calendar and were counting the minutes to take off, despite knowing that Santa would probably not make the trip to Seattle for them. When she realized later that morning that the trip was off, I had to crawl up in the bed next to her to snuggle, she cried herself to sleep.

Well, it was not a short stay. We just came home today. She was diagnosed with RSV that got much worse before it got better. Her labored breathing became much worse, and she was on oxygen the entire stay. We did finally get some GI attention, and as I had been saying all along, the meds and food I was putting in the J tube was backing up in the stomach causing her to vomit, aspirate and cause some of the wheezing. For most of the stay she could not cough anything up, when she did it would get caught and cause choking and her sats would go alarmingly low. It was another painful experience, one in which you feel so helpless, and wish you could change places with her. They put her on the OR schedule to replace the G/J tube on Christmas day, but the head CV radiology doc was really nervous about putting her under with the breathing problems. So it was decided to do it in CV radiology with no anesthesia, we did it! It was a heart wrenching ordeal, that seemed to last for hours and just when we were almost through it, the balloon broke inside her stomach and they had to pull it out and put another new tube in. Merry Christmas!

Tears were always at the surface for so many reasons, the pain of what she lives with, the heartbreak the three of us felt at not being able to spend the holiday with Wyatt, and another holiday spent in the hospital. But as always, God sent angels disguised as friends, to help us through it. Paula and Janet at the RMH house put Maddie and Mikaylah on Santa’s “nice, not to be forgotten” list, and Bev Martin and family took her to the RMH Christmas Eve Celebration with Santa. Later they delivered presents to Maddie and the smile was worth a thousand words! Maddie wrote Santa a Christmas note, we taped it to the hospital door along with cookies and milk swiped from the nurse’s station and when we awoke Christmas morning he had visited us there as well!

When we arrived home this afternoon, so many more of you had remembered us with your cards and gifts. Words can not adequately express our gratitude. Thank you for caring enough to do so much!

Thursday, December 11, 2003 0:08 AM CST

Maddie has new casts in yet another color combination. I wonÂ’t make you guess this time: one bright purple, one hot pink, both have glow in the dark stripes. She has denim blue cast boots, and purple striped toe socks. I may be biased, but I think she is the cutest, casted kid I know!

She wants to walk so badly and is constantly asking us to hold her hands so she can try. It is very difficult for her to lift her little bird legs let alone navigate her steps. But thank God she wants to after all she has been through. We will talk to a surgeon about lengthening the heel cords now in January.

Eating is still a big issue for her, although tonight she feed herself a cup of tomato soup which is the most she has eaten in a while. She has spurts where she requests a variety of things, but only manages to eat a tiny bit of anything. I wish I knew whyÂ…could it be because she feels full, she has no cravings, or she has no taste buds after all she has been through or she fears throwing up? I want to get her off the IV TPN because there is a good chance of liver problems from too much of that, I feel so helpless on this. I would rather increase the G/J feedings which are not a potential risk, but she doesnÂ’t push it through her system fast enough and then she wakes with fluid overload and wheezes. GI doc tried a motility drug which only made her puke, and today her nurse told me she just doesnÂ’t know what else to do. I do! Find another GI doc. I just donÂ’t feel like I have full engagement from her on this. I asked for a drug that might increase her appetite, and she said Â“WeÂ’ve never done that before.Â” And I said, Â“Have you never done it before for a medical reason, or have you never thought of it before?Â” To me there is a clear cut difference. So the struggle continuesÂ…

The girls are both in the same room here which has itÂ’s own set of problems, some of which you might well imagine, but it is often the brightest spot in my day as I listen to the melodious sound of their laughter and singing nightly when they are supposed to be asleep! I sometimes creep quietly up the stairs just to hear what makes them giggle so robustly. It is usually a joke that makes no sense to me what so ever, but it is like music to my ears just the same. I wish you could feel itÂ…

Saturday, November 29, 2003 0:20 AM CST

Food, Friends and fun, it can’t get any better than that! Thanksgiving Day was wonderful, in that we had no demands on our time, and we just kicked back in our “jammies” reading books until dinner was almost ready at the Kwan’s (Kristina and David) home. It was a turkey done Chinese style (very, very tasty), homemade Vietnamese noodles, garlic mashed potatoes, my Chinese Cole Slaw, and other delicacies. (I was actually still full from a late night dinner at their restaurant the night before, complete with Crab, Squid and Cheese Puffs) We watched Chinese movies and relaxed in the massage chair!( Kristina is practicing to do Maddie’s TPN feeding bag because Maddie wants so badly to stay over night there like Mikaylah does) We have so much to be thankful for!

Maddie got more Botox on Wednesday. This time he split the dose into more shots so he could hit the muscle in several locations. He attaches a machine that reminds me of a fish finder on a boat that makes noise when it touches the muscle guiding him to the injection site. It was a very early morning appointment, but I put the numbing cream on her legs before we left home. I hope to never know how it feels, but I know as I hug her close during the treatment that it is painful. They will stretch and cast her weekly as before. On the 18th we will see a surgeon about surgically lengthening the heel cords. They tried measuring her for new casts, but could not get her heel stretched down far enough, so they will wait for the Botox to take affect, and then make molds for the casts. Dr. Gormley is very well known for his research with Pediatric Botox for spasticity. I took him a book that I got early this year at a Cerebral Palsy Conference I fell upon while in Florida on business. I met the doctor that wrote it, he has also done extensive research on Pediatric Botox at Wake Forest, NC. When I gave it to Gormley, he said, “Outstanding research, great man, look who edited the book.” He did! It is such a small world!

Today was another good day…no I didn’t make it to any early bird sales like I did before all of this started, but I did finally have child care, and one training for next week. Our friend April took another job on the 19th, because she needed health care benefits that this agency didn’t provide. It then was on again off again service, that made going to the office next to impossible. The school pitched in, so I could work during her 2.5 hours at school, and then I just balanced the rest…not very quietly I might add.

We then had Thanksgiving Day again, complete with homemade corn bread stuffing, sweet potatoes and pumpkin pie at the Wilkinson’s, another neighbor. (Kelly battled the nursing situation, the MN aid financial fiasco, and the van retrofit project for me) I wonder if we could make a habit of this…?

And then Brian, Kelly’s husband silenced my door bell so we wouldn’t be wakened to early on mornings we manage to get some extra sleep.

God is good and we are thankful for even the smallest things!

Wednesday, November 19, 2003 11:32 PM CST

“Mom, I have purple legs!” Those are the excited words I heard from Maddie over the phone as I sat stranded in the Dallas airport on the way home from teaching a group of new sales folks. (For those of you that have never heard my airport stories, this is one of those!) “Mom, she hit the wall a couple times, but she made it out to the kitchen all by herself!” said Mikaylah. The long awaited wheel chair has finally arrived; it is dark purple and electric! She finally can once again get around independently, and I can only imagine what that must feel like. Shame on the skeptics that turned us down for funding with out even meeting my determined little miracle with the infectious spirit! If they could see her now…

I sat there wishing I didn’t have to work, wanting to be home, and feeling like I had missed my baby’s first steps. My emotions were hard to contain, so the gentleman next to me loaned me his handkerchief. I didn’t want to hang up, I wanted to savor the joy I heard on the other end of the line, but my flight was called and I surely didn’t want to miss my ride home. I sat in my seat, closed my eyes and envisioned her riding all over the house. I was awakened from my thoughts by the announcement that there was brake trouble, and we would have to de-plane and wait for a new plane…so much for my quick in one day and out the same trip. But as my airport tales go, I met some very nice people.

The handkerchief man sat down next to me, and asked me about what he had overheard and the outpouring of emotions he had witnessed. He needed his handkerchief after I finished my story. He then explained why he was traveling to MN on this very delayed flight. His wife has cancer, and like me he wished he didn’t have to work, but he does too, and he is temporarily assigned to MN. It just so happens he was on his way to work at the very same medical supply company that our wheel chair was purchased from!

Mikaylah turned 9 on Sunday; it seems like only yesterday that I held her in my arms for the very first time in China. My heart aches for all that she must handle through all of this. I took her out for brunch, just the two of us, and we held hands under the table like lovers on a first date. After lunch, we picked up Maddie and 5 other kids and went to see the movie ELF. All the kids and several other neighbors came in for cake and ice cream afterwards. Later that night when all was quiet in their bedroom, I heard footsteps, and then felt a hug,and a kiss as she whispered…Thanks Mom! Parenthood is the greatest!

Monday, November 10, 2003 11:16 PM CST

Today was one of those days difficult to explain to someone who “hasn’t been there”! It was a very early morning scramble to the clinic, during rush hour, which doubles the drive time, for two appointments (both stemming from my militancy last week!). Mikaylah went with, to early for her to go to school, called them both off, canceled bus and therapies, pulled and packed meds and supplies to unhook TPN, fed and took Alvin out, packed breakfast, loaded car with all of the above, checked and returned voice mail in crazy traffic on ride to clinic, no parking place, (removed barricade and made my own), ran pushing stroller the 2 miles (not much of an exaggeration) to clinic, checked in to find out there are some billing issues, checked time(forgot my watch) 8:21 a.m. Made calls to try to get billing solved, received 2 work calls and two from medical supply company, (wheel chair delivery detained again,) called in to see first doc (GI specialist that I believe is less than engaged or has a failure to communicate with us), struggle desperately with her message that since Maddie has lost a bit of weight, we must put her back on something through the G/J tube to beef her up. I so wish I was a doctor so I could communicate on a level playing field, my maternal instincts say that she is asking for and eating more and that to increase tube feedings will set us back and keep us from getting rid of G/J tube and the Hickman (TPN is by the way dangerous for the kidneys with continuous use, that I have learned and we agree on). It is hard to take this news from someone you really don’t feel is a partner in her well being, but I have to believe she has a medical degree because she knows her stuff.
Enter doc number two, whom I do trust and have confidence in, and who recognizes I am wrestling with the decision, so he then takes time to explain doc number one’s point of view. He says that it is more important that she have the caloric intake to grow and get strong, than if she eats real food. He also says it is unlikely that she will turn away from food, forget how to eat, or not be motivated to eat, despite the many cases of kids that do have those problems. While that makes more sense to me, I still struggle with the fact that her counts, including electrolytes have been super the last two blood draws, and that today’s dialogue was without a blood draw to rely on. I wish now that I had insisted that they do that. I have been tracking her food intake and will fax it tomorrow to the nutritionist to see what they say. I did restart the 2nd pump tonight with Pedi light. I don’t need to be right, I just want someone to have all of the facts and be sure.
So, we are done, I am feeling worried and concerned, billing is still an issue, and I realize when Mikaylah says she is hungry that I have no purse! Getting out of the pay for parking garage is a trick I don’t have up my sleeve, so I made a call and borrowed money from our social worker.
As the three of us are slowly walking back through the tunnel to the car, Maddie asks, “Doesn’t God know I ate good?” “Do they think I am getting better?” That trivializes all that happened before, and is a pain to deep to explain…unless you’ve been there.

Wednesday, November 5, 2003 0:55 AM CST

Surgery went well on Tuesday. The doctor that put the new central line in, put in a single lumen instead of a double which helps decrease the chances for line infections. I ask him if he would use a previous scar on her chest when he placed it so that when she went to her first prom she could wear a low cut strapless gown…he did! The G/J tube came out and was replaced with a less obtrusive one. Doctor said it was shot, and that the line had tied itself in a neat, perfect little bow around her small bowel, something he had never seen before. Her eating has picked up a bit since, so I am cutting back on the TPN and tube feeds to see if I can’t wean her off. I have no medical direction on that and it makes me crazy, so of course, being the militant Mom that I am, I had to give someone a piece of my mind tonight. A nutritionist will call me in the morning to help decide what to do. It just seems someone should be guiding me here, I'm her Mom, not a medical professional.

We picked up the new van on Saturday. She is a beauty with all of the bells and whistles that excite old and young alike. Three power doors, the best invention a Mom could hope for. I will take it to the up fitter to be equipped with ramp, power wheel chair tie downs etc. They completely lower the floor of the van, move the gas tank and rewire the inside. It takes three weeks from start to finish. It is amazing, and the company here does vans and ships them all over the country.

Thanks to our good friend Janet Mitchell, the girls had darling handmade Fairy costumes for their Halloween parties. Complete with wings, wands and crowns they were the prettiest, best dressed fairy princess in the land! How lucky we are to have such wonderfully talented and thoughtful friends. They changed like Transformers into warmer costumes for their door to door adventures since we live in Minnesocold. Maddie, as you see, was Roo from Winnie the Pooh, Mikaylah was an Indian princess, and I was Sponge Bob. It was the first Halloween not spent in the hospital in a while…Hope I can say that about New Year's Eve. Janet promised to make me a fairy costume next year so I can wear it with the leopard skin bra and thong that my friend from Holland sent me for my birthday…won’t that just be a beautiful picture! (You won’t see that shot on this website!)

New braces and possibly more Botox in the very near future as she appears to have out grown these braces which makes them very difficult to get her foot into. They hurt and leave red marks which make her efforts to walk less appealing. But does that stop her, not for a minute, if I put that walker (thanks again John Karel) in front of her by the couch, she reaches for it, stands, straightens and takes a couple steps despite the pain. These are the bravest kids I know.

Monday, October 27, 2003 10:45 PM CST

October 25th was two years post transplant for Maddie…the second transplant that is. Her pic line continued to plague us this weekend and today the stitches came out again, and I ask to have it pulled! She has the tiniest little arms, and this arm is a mangled, puffy mess. She can hardly straighten it. So today they removed it and tomorrow we will go back in to surgery to have a single lumen Hickman put in her chest. They will also replace (long over due) the G/J tube in her stomach with a flat to the stomach Mickey. If only she would eat and drink more, we could take them both out for good! Actually she has eaten really well the last two days; I pray that she will keep it up.

We finally were able to make contact with our first donor. He is an Asian dentist from California. It was wonderful to talk with him and thank him for his selfless gift one on one. When I ask him why he did it, he quietly said because he too had a daughter. The donor center also said that he donates his time and skills in third world countries helping other children. I thank God he decided to help us! He only knew that the first transplant did not take, he did not know that she had survived and had another transplant. I hope I was able to adequately convey my gratitude for the gift he gave us,the chance for survival. I thank you from the bottom of my heart!

Our electric wheel chair has finally been ordered…oh,the paperwork and time involved. That was almost as painful as visiting the DMV. I have been van shopping for a van to be unfitted with the ramp and other handicap accessible equipment that too is about as much fun as standing in line at the DMV. I think I have finally found one in a price range I can live with, that has what it needs so they can do the retrofit. I look forward to the day when I no longer have to lift that chair by myself; the only thing sweeter would be not having a chair at all!

Keep her in your thoughts and prayers tomorrow and always!

Monday, October 20, 2003 11:01 PM CDT

Our good friends from Holland, whom we met at the Ronald McDonald House two years ago spent last week with us. It was a bittersweet week as we shared memories, laughter and war stories of our battles to save our kids. There is a strange comfort I feel spending time with parents/friends that have lived this nightmare and can truly understand and appreciate the heartbreak, the fatigue, the disappointment and the determination to beat this disease at any cost! It is some what easier to allow them to help, to let down the façade of strength with them because they have lived it. They sense my unspoken needs like only parents who have been there can. At the same time, they so unselfishly give of themselves despite having loved and lost their fight. It is an inseparable bond and love that we will share forever, but would so gladly forfeit for healthy kids.

We shopped (Rob got lost in the Mall of America), climbed the rock wall, ate, went to Camp Snoopy, took walks, looked for a handicap accessible van for us, ate home cooked breakfast every morning(thank you Rob), and enjoyed the beautiful weather here. It is so beautiful to watch the kids play together, both girls love 10 year old Ricky and he is so attentive to Maddie. It is amazing how patient and kind kids can be and how normal they seem to make the situation.

Maddie’s stitches came out again on Friday, so we drove to the hospital to get them replaced. It is not a fun thing to watch, and it is obvious from her distress that she hates it. Her skinny little arm has been through so much, it seems almost impossible that they could find a site on her skin to reattach it. Yet, when it is over, she is ready to play the rhyming game with the nurse and then go back to find ours friends to go for a walk by the Mississippi. She couldn’t keep anything down on Saturday, but on Sunday was much better. Sunday night her J/G tube started bleeding and I had to call ER for the third time this the weekend. This morning with one eye open, and a smile almost as big as the Mississippi she said, “Is it time for school yet?”…the transition from disappointment to determination time and time again!

You are loved and dearly missed Robin. I know you, and all of our other little angels were looking down on us last week. God Bless You.

Wednesday, October 8, 2003 11:15 PM CDT

SHE WALKED! She is as proud as a peacock and rightfully so! The last set of casts was removed, and we were able to stretch her into her AFO’S for the first time in a year. The first day it hurt to bear weight, (she hasn’t been on her feet for over a year) and the braces (called AFO’S) left sore red marks on various pressure points (we got them fixed the next day). The next day she stood with assistance and was able to move her right leg a wee bit, but had great difficulty navigating with the left. But that didn’t stop her determined little spirit; she lifted that leg with her hand as I steadied her and made it go straight. With me holding both hands and nudging her knees from the back she took a few steps. She was so excited and couldn’t wait to go to school to tell her classmates. The next day at school she stood for them and walked several steps with assistance.
Last night she asked for her walker and pestered me numerous times to help utilize that instead of my hands. I still needed to hold on and nudge that left leg a bit. It was almost like it forgot what to do. But that didn’t stop Mighty Maddie; she kept asking to walk and was excited to show Kristina, Kevin, Jaz and Michael her newest accomplishment. They rooted and cheered as if they were at a sporting event.
Today when I got home from work, April, her nurse, said” She is wearing me out!” “She wants the walker up by the couch, so she can reach it and get up when the desire moves her", turns out it was quite frequent! We went over to Kristina’s for dinner and before she had time to digest numerous pieces of Chinese corn, she was begging me to help her strut her stuff for her fan club. Tonight, as Kristina and I took turns holding her hands she walked completely around the island in the kitchen, and in to join the kids watching Jackie Chan on TV. We barely had time to get the kinks out of our backs, and she was raring to go again. I fully understood where April was coming from, but it was the most blessed aching back I’ve ever had!
Keep the prayers coming; he is listening and working miracles!
Maine Medical Center has just received a huge grant to do Stem Cell research. A company in Cleveland (if anyone has any info on that that they could send me, I’d be much obliged) is building a brand new facility to do Stem Cell research. Keep the faith Lucas, Matt, Sam, Maddie, and my dearest Madigan, I know the cure will be found!

Friday, October 3, 2003 1:30 AM CDT

I took Maddie for her immunizations for school on Saturday, but she had a fever so we could not get them. She was also very congested, so they suggested we go into the city for a chest x-ray. We did, they admitted us! They gave her IV antibiotics, nebs, TPN, and nightly feeds before releasing us yesterday. Her counts were excellent.

Today she got her casts off for the third time. One leg looked very good and fit into her brace, the other was better than 2 weeks ago but still hurts in the brace. Dr. Gormley wants her to wear them 24/7, she is truly not a fan of that idea. He wants PT to work at getting her up on her feet to see if this will work. We go back in 2 months and he will decide if Botox and casting worked or if surgery to lengthen the cords is needed. She then would be in casts for 6 months.

I did not send her back to school this week, but I am taking heat from her for that decision. She still is very congested and threw up tonight when I gave her meds. I hope to send her Monday if the weekend is a good one.

I worried so much when I saw that she was behind her fellow classmates, but I also know that when they were learning their ABC’S she was learning the names of her drugs and memorizing the process of hep locking her pic line. I had to go to work this week while she was (an aide stays with her) in the hospital because I had a class of 15 in from all over the US. When I got there after work I went thru my usual questioning routine:
“Who was in today?”
“Dr. Charlie”
What did he have on his tie?”
“A moose?” (I wonder about that?)
“Who Else?”
“Two other docs.”
“What did they say?”
“Stoma looks good” (How many first graders know what that is?)
“They weren’t very smart!”
“Oh, Why do you think that?”
“They said I had leukodystropy…I told them I had Metachromaticleukodystropy!
I should worry that she doesn’t know her ABC'S?

Tuesday, September 23, 2003 4:34 PM CDT

The first day of school has been harder on me than my kids for the last 24 years. When I left Wyatt at Purdue that first year, he turned to one of his new friends and said, “My Mom gets real emotional every year when I start school, so I need to give her a quick kiss to reassure her that I will be just fine!” Well, some things don’t change with age, I cried on Mikaylah’s first day again this year and she said, “Not again!’ Yesterday when I wheeled Maddie out to the school bus, and helped load her on, I had to hold it in as she was getting on an empty bus, going to school for the very first time. She was more excited than the other two ever were put together, and I did not want to do anything to dampen her excitement. With mixed emotions, scared to death for her safety, I watched Don strap the chair down for the ride. She kept looking up at me, with that smile that melts your heart, and did that special little Maddie wiggle that she does when she is excited. I followed the bus in the van, and jumped out at each stoplight to tap on the window in case she was afraid…she was laughing!

Once at school, (She currently is only going to attend acouple hours each day), the principal came out to welcome us and escort us to her classroom. Mrs. Torp, (Mikaylah’s teacher last year), announced our arrival to the class and the kids jumped up to welcome us oblivious of the chair and the brightly colored casts (Contest Answer - 1- blue, 1-Lime Green and both have glow in the dark stripes)! She had an assigned cubby, seat and a cute little friend waiting to sit by her. She joined in classroom activities to the best of ability,her classmates eager to lend a hand or give her the right answer. Sharing and helping were the norm in her new class.

We had packed her brand new Pooh lunch box, with some of her favorite snacks, and she kept asking her new friends what time lunch was…haven’t heard that in a long while. When we finally entered the lunchroom, she waved at several of her friends from the neighborhood and settled in to a crowded table to chow down. I gave the kids in her class a challenge to help me get her to eat, and they took it very seriously. Everyone at her table was anxious to share their lunch or lend a hand to help her get food in her mouth. They laughed and talked like typical little first graders,and today they all threw away more food than they ate because they were having so much fun!

Several of her friends elected to stay in doors with her to play during recess. Each day they will take turns. April, our babysitter will go each day to lend support and give her the personal attention she needs to learn and perform first grade tasks.

I never allow myself to think negatively about her disease because I believe I must be the stability when all else is in chaos, but, I ran smack dab into reality when I sat there on the floor with her in my lap, surrounded by her classmates. I was overwhelmed by emotions that are never appropriate to release in her presence, and wished I could just once, run away and let it all out, alone with no repercussion.

At 3:30 am, when one of her pumps squealed to be checked, I walked into her room and heard her melodious little voice asking me if that was the alarm for school. Earlier emotions melted into happiness as I realized how much going to school meant to her. She can’t control her pencil very well, or run and play with the other kids, and we have to work on the raising your hand before speaking thing, but there isn’t another little child in that class as happy to be there as she is…and not a Mom prouder than I am!

Wednesday, September 17, 2003 10:27 PM CDT

Today was cast day again. She was up and down all night vomiting again which made make cast day more unpleasant than usual. We had an early morning appointment, they removed the red and blue stripes, sedated her a bit, stretched her to 90 degrees, (Dr. Gormley said he got a good stretch, Maddie didn’t think it was so hot!) and then recasted her. She vomited there as well and they almost sent us home to wait 24 hours before they did it. Guess who nixed that idea in the head!

So the contest is on once again…place your beats be creative! In my humble opinion, these are the coolest ones ever. The neighborhood kids came running over to see them tonight, and as bad as she felt she was excited to show them off. I can’t imagine how bad she must feel with her tiny little legs stretched and captured at that painful stretch, struggling to keep her eyes open daily, and vomiting on top of all that. Watching her as she continues to preserver through all of these horrible things I am reminded every moment of how very lucky I am to be her Mom.

I spoke to the principal of her school today and we have decided to start her out in school on Monday for two hours every day. They will pick her up, and she will have someone with her at all times at school. She will be in reading class, a social time called morning message, lunch and part of recess. When I told her tonight it appeared to be the only bright spot in her day. And when I tucked her in tonight, she said, “Will I be able to do homework every night?”

Tuesday, September 16, 2003 0:09 AM CDT

Our doctor’s appointment last Monday went very well. Her counts were once again stellar! Maddie proudly handed Dr. Peters the picture of her driving her Barbie jeep and he promised to put it up in his office. Check out that photo posted on this page where it says photo gallery. I can hardly keep that jeep charged up for her as she expects to go for a drive every night when I walk in the door from work! It is so cute to see her behind the wheel tooling down the road. I almost forget she is sick, until a couple of her small “buddies” hop in to help her navigate. Robbie (3 years old) and Michele (6 years old) seem to intuitively know that she gets tired of lifting her heavy, casted leg to move the accelerator, so they reach down and gently place it there for her. Amazing how little kids can understand that and are so compassionate.

The deck continues to be worth the money as both of the girls love to play out there. The neighbor kids come over and ask for Maddie to come out and I can let her sit there on the swing and play with them. I always think I will get work done then, but I am drawn back to the window by their cute conversations and laughter. Summer will be over way to soon, and there will be plenty of time to clean when laughter on the deck can't be heard.

Mikaylah loves school, and Maddie can’t wait to see how much time I will let her spend there. I have to have a meeting with the school in the next week to decide travel arrangements and amount of time she can spend there. She has to get all of her baby shots over since the transplant wipes them out…I haven’t shared that news with her. It will take 14 months to complete them all as bone marrow transplant kids have a different regiment they must follow. She is currently being home schooled like last year.

The Pediatric Research Foundation did another story on Maddie to promote stem cell research and it was printed in the Minnesota Vikings game day program last week. I will get a copy and post it to the site. The author interviewed me as well as read the journal entries, and actually used the story about her trying to eat the pickle.

Prayers go out to another Ronald McDonald house family, the family of AJ Trivola aka “Batman” who joined so many of our other little friends in heaven last week. He was truly a super hero…

Sunday, September 7, 2003 10:58 PM CDT

Well, if you guessed red or blue you were half right! She asked for stripes, and as you can see she got what she asked for! She said she wanted the blue for Wyatt. She actually tried standing in them when Wyatt was here. He and I held her hands and she took two steps with our assistance. We go to see Dr. Peters tomorrow, she can't wait to tell him!

She is asking to eat more, and works so hard to do it herself. Tonight we ate at the neighbors and with two hands she held her glass and gave herself a drink! She had a spasm and spilled it all over her, when the liquid hits here she jumps more making things worse. But, as soon as I wipe it up, she goes right back to try it again. She actually ate a bite off her own spoon too tonight.

Wyatt left on Saturday; there wasn’t a dry eye in the car as we drove away from the airport. We had so much fun while he was here; he is such a grand big brother! He never seemed to tire of the questions, or the attention. He spent time teaching Mikaylah the computer, and made me wireless so I can use my laptop anywhere in the house. He showed us pictures of his trip to Japan and his new house. The girls asked today why he couldn’t just bring his girlfriend back here to live, since we had enough room.

It was Pat Lang day at work one day last week. They threw a surprise party for me to celebrate 31 years with GE. Wyatt went in to work with me that day, and they had called him and told him all about it. As I excited the car and was walking toward the building, I saw a big banner hanging at the entrance announcing Pat Lang day. Complete with political humor, gifts and good friends, it was a day to cherish.

As I was doing the dishes alone in the kitchen one night, I heard Maddie giving Wyatt the third degree; “Do you miss CeCe? (His girlfriend) “Do you love her?” “Do you kiss her?” I went out to the couch to get a closer look, she sat there, and so close you couldn’t get a finger in between them, looking up at him with her adoring eyes. Mikaylah was sitting on the floor preventing him from moving his legs, as they watched a Chinese movie together…it just can’t get much better than that!

Tuesday, September 2, 2003 11:41 AM CDT

The girls have been on cloud nine since Wyatt arrived last week. We have been busy showing him our new home and surrounding area. He has been properly introduced to all of their friends as “my favorite big brother” and he and Mikaylah have spent hours exploring on the computer together. We visited the State Fair, and the Renaissance Festival, and hope to go fishing later this week (I planned that so HE could bait the hooks!).

Maddie had her casts removed on Thursday, was stretched more and recasted in the new stretched position. They gave her something to relax her this time, because the stretching is very painful. Can you guess what colors her new casts are? Place your guesses in the guest book, and Friday we will post a new picture. If you are a winner, Maddie will send you a prize!

Today is the very emotional first day of school. Well, emotional for me. Funny how that never changes, I was as emotional today as I was 20 plus years ago when Wyatt first went. He decided to stay in bed this morning to avoid the trauma. Mikaylah hopped out of bed early and went through her morning ritual without being told. Maddie kept begging to pack her back pack and lunch box. So I loaded up the van with all of their supplies, Maddie was still on the pump, feed time wasn’t done until I got to the school. So I flushed and hep locked her there before we went in. It is a brand new school over 600 students, so you can well imagine the chaos. We found Mikaylah’s cluster, and then went to visit Maddie’s class/cluster. Maddie’s teacher is the same one Mikaylah had last year, she is awesome, as is Mrs. Johnson the principal. We will work out an arrangement so Maddie can go for acouple hours during the week. They are printing me up a schedule of events so I can plan how to work things out. We will be discussing all if this with Dr. Peters for approval before she actually starts. One of the thoughts is when she is home schooled, to have the students take turns coming with the teacher so it would feel more like a class room for Maddie. We will keep you posted as the schedule evolves. We are so lucky to have such an excellent group of teachers/staff working with us to accommodate Maddie’s needs.

Monday, August 25, 2003 12:09 AM CDT

How many times does it take you to stab a pickle with your fork? It took Maddie 21 times on Saturday, but she didn’t give up, and she finally did it all by herself! There wasn’t a dry eye in the house as we watched her, determined to beat the tremor and do it by herself! As her Mom, it was an emotional battle of hurting inside as I watched her struggle so hard, and immense pride when the pickle was finally in her mouth, and that big Maddie smile appeared.

It was another very busy week last week. The Asian Pacific forum came over and taught us how to cook Asian rice, stir fry, and make egg rolls. YEA...more goodies for the freezer. It was so much fun, and very delicious.

Friends from work came over each night as we prepared for a garage sale. Shelves were built in my garage, a “cool” little reading room was made in the unfinished basement so Mikaylah could go down there with all of her books. Heavy treasures from the basement were dragged up from the basement and priced for sale. Many other things that I just don’t have room for here were also sacrificed and priced for the big sale on Saturday. The painting is almost all done, one more coat for the hallway, and the three bedrooms and that project can be marked off. Boxes full of Wyatt’s stuff are ready for him to go through when he arrives this week. Sheers are up in my bedroom,you can finally walk through my closet and ALL of the clothes are out of the tub!! It is starting to look like our home at last.

Sale went well on Saturday, got rid of many things I needed to and had fun doing it. But the best part of the whole day was when I put Maddie in her Barbie jeep; she lifted her casted leg with her hand on to the accelerator and took off down the street. Friends and neighbors were quick to cheer her on. She would not get out! So I had to put an umbrella in there to shade her from the grueling hot sun. I finally took her out after 2 hours, she napped for 2 and then went right back at it. We went to the show later with our buddies form RMH, and when we got home after dark she had to get back in it to drive down to show Kelly and Brian because they weren’t home earlier when she buzzed by!

I finally put my little “Parnelli Jones” to bed, but not before I accidentally caught her g/j tube between bed and rail and pulled it. Had to call the hospital to see what to do, since it pulled partially out. It did work for me to feed her through it, but we will have to go in this week for an x-ray to make sure it didn’t pull out of the proper place internally. The doc on call actually called us Sunday to see how she was,that is one of the reasons we moved here! Then last night the IV pump died in the middle of the night, and we had to call for them to program and bring us out a new one. They did it,(another reason we moved here) and this morning she is ready to go driving again.

Mikaylah and I went and checked out the community center right down the street from us. It is a very beautiful facility with a huge, fancy pool, and a ton of activities for the entire family. She was all excited about that. We have plans to go see the movie Winged Migration this week together too. We are also going to the State Fair one-day.

Wyatt will be here in two days, but who is counting??

Monday, August 18, 2003 5:12 PM CDT

What do you think of my newest picture? Our good friend Kelly, recognizing how cute I looked with my new do and new braces, snapped the shot and then put it out there for us. Do you see my new casts? One is purple for Mom and me, and one is hot pink for Mikaylah. (Nurse said they never did 2 different colors before, but I am an out of the box thinker like my Mom. I know what I want...and usually get it.) I also have hot pink, rubber soled boots to wear with them in case I decide to take a stroll one of these days. I just might,because I am feeling much stronger these days. These casts will be on for 2 weeks; they then will stretch me again (UGH!!) and recast in hopes of bringing my heel down as well as try to straighten out the ankle. I did try to stand with the casts on, but my weak little legs wouldn’t hold me and I took the “digger”! I’ll keep trying.

Bev and Monica (friends from RMH) visited us last week, boy were we busy! Cooking, eating, unpacking, eating, eating and eating. Bev’s pumpkin pies are so delightful, Mom even begged her to make extra ones for our freezer. I figured we kept eating so we’d have the energy to keep working. Bev cooked so when Mom got home from work we were ready to chow down. We even all ate at the big table instead of Mom eating walking around while feeding us. Next time they come, Mom says she’ll work on Bev’s famous cheesecake for the freezer.

Our new church here is awesome. It is very big. They have 4 services each Sunday, plus a ton of other groups within the church that meet the needs of such a large congregation in so many ways during the week. I think they have 4-5 pastors! I bet Pastor Doug will want to move here! The music is fantastic; it is amazing that so many talented folks go to the same church. Mikaylah loves Power Zone – her Sunday school. Mom checks her in every Sunday by computer, and we check her out after church by matching our sheet with what is in the computer. This last week was vacation Bible school at night so Mom could get us there. We were ready and waiting each night as she hurried in from work, threw us in the car and took off for school. All the kids in my class were so good and helpful to me! They helped me participate in the crafts (my OT person, Cheri was one of the helpers there), eat my freezey, and some of the Dads helped carry me during the physical games so I could be a part of it. The kids loved pushing me in the double stroller, so many of them in fact you could barely see me inside! I was very sad when the last day of Bible school came, but I’ll make sure we get up for church each Sunday so I can see all of my new friends.

Wyatt will be here in 8 days; we have a calendar and are marking off the days!

Thursday, August 7, 2003 5:17 PM CDT

“Maddie your counts are better than they have been in months!” Said Dr. Peters at our visit on Monday. Her kidney function was excellent, and her albumin level (back door measurement of nutrition) was also super! So perhaps I should become a GI Doctor, since I changed the protocol and it worked. He said he would send a letter to GI regarding the change and her status.

We met with Dr. Gormley for her Botox injections yesterday. (I taught them about the effects of heat on EMLA (numbing cream) – thank you Dr. Neider for teaching me). She wasn’t very happy, but she was a trouper. She raises the bar for me. She inspires me to dig deeper for the strength to do what feels hardest, what’s scariest. WE can all learn so much from these very special kids; they model courage and character for us!

They will stretch her leg muscles next Thursday, and then cast her in that position on each leg, much like they did in Ohio. Two weeks later they will take those off and do it again. We miss you Kira! I don’t know yet if this will enable her to walk again, but do believe I have to take that chance for her. I believe the price of doing nothing is always greater than the cost of risking failure, besides “I don’t believe in miracles…I depend on them!”

Please keep all of our special young friends in your thoughts and prayers, Brooke who just had her kidney removed again, Monica, waiting for another pancreas transplant, Lucas the Shrimp eater, who suffers from MLD like Maddie, and the three Trimper children who also have MLD. They have been tested in ways that most of us can’t even imagine.

Thursday, July 31, 2003 12:58 AM CDT

I need to warn you; in case you don’t know already, our health care system is screwed up! Somewhere along the way, it became more of business as usual than saving lives. If you aren’t currently well versed, out spoken, and a demanding advocate for yourself and those you love, no one else will be. Big business, and insurance companies are preventing most doctors from doing what they do best, research and treating patients. Don’t assume anything, ask questions and be vocal about your wants and needs. Be a partner/actively engaged with your doctors, not an innocent bystander!

Friday, Maddie had a GI appointment for the continuous vomiting, which by the way has been reduced greatly since I substituted the Pedialyte for the Peptimin Jr (formula). In fact she is eating bits and pieces of stuff and asking for more. She ate enough mini Oreos the other day to turn her gums in dripping black goop, dribbling down her shirt. When I looked in my rearview mirror and checked out the black slobber on her face, hands and white shirt, I laughed harder than I have in a long time. Mikaylah was confused as she was sure Maddie was in trouble for the mess.

She had also accidentally, in her sleep pulled out a supporting stitch form her pic line on Tuesday, so I called ahead to say I was still able to infuse through it, but the stitch would need replaced. After a bit of an argument they scheduled that for Friday also. We checked in on one floor as directed, they told us to go to a different one – process change. We followed directions to the letter and were told, we don’t do that here now, go back down to CV radiology, but first go to 5th floor for ID bracelet. Done - On to CV radiology - wait – remind them we are still waiting – finally we are in – opps, can’t just put a stitch in, need to go back to 5 for an order to have a chest x-ray- pass a little old man in the hall that can’t find his disabled wife, he had dropped her off 15 minutes before – evidently I was the only one that sensed the urgency in his voice and the fear on his face, so we went in search together. Finally back on 5 we wait, and wait for the Chest x-ray order, we have it in hand, as well as my requested order to replace pic if need be (someone has to be thinking ahead), and we then get a call to get back to CV saying we don’t need either for some reason now – go figure!

Back to CV radiology, where they decide to replace the pic line, (painful surgical procedure) without the topical EMLA to numb the injection site for the lidacane because it was faster. Imagine your 6 year old, who has been there done that, going through unnecessary pain…nurse agreed with me, I had EMLA in my purse, and taught them the secret “use heat on it treatment” for faster results (Thank you Dr. Neider!). We go check out our second home, visiting hospitalized friends until it did it’s magic. Line is replaced, we go back to the clinic only to find out dr. can’t see us now – she has a meeting to go to, we have to make an appointment now for a different day to find out what to do about a child that has major nutritional/health issues. Who in the heck is the customer here anyway?

So when we finally got home at 8:00 PM that night, I decided to do what April our home nurse and I had already come up with that seemed to be working. Halt the formula feedings, use Pedialyte instead and keep pushing food at her. IT is working – she ate ¾ of a hotdog and a whole piece of pizza! I guess being a Mom means you just have more skin in the game and a greater need to win!

Friday, July 18, 2003 5:36 PM CDT

I wish all of you could have been in my kitchen last night…I set a plate of food in front of Maddie, turned my back, intending to return and feed her,and when I turned back she was putting a bite of chicken in that sweet little mouth of hers all by herself with no visible tremor! AMEN!

The last two days she has requested specific foods and has actually eaten a couple bites of that request. Watermelon and chicken have been high on the list. She is on two new drugs and I have watered down the tube feeds at night as well as using Pedialyte during the day (so she isn’t as full) and the combination has helped reduce the frequency of the vomiting. She is real congested right now, so I am doing Neb treatments, which are not her favorite thing. A friend from work came over last night and baked fresh homemade bread for us and delighted us with her flute solos which helped to make the Neb treatment bearable. Carol even played a special request for Maddie, (which I’ll bet she learned especially for her) John Denver's Country Roads. Next time I promise I will take a picture for the website. It was a beautiful scene.

I believe we are where we are for a reason, and everyday I see more evidence of that. My manager here, sent out an email request for help for us and then had a meeting with those responding to sign up for areas they felt they could best help us. Handy work, grocery shopping, dog walking, special time with Mikaylah, house cleaning, food prep, garage sale organization, they didn’t miss a thing. Tasks were assigned and already the work has begun.

A traumatic as our life has been these last several years; we have truly been blessed by the love, and support of neighbors, friends, co-workers, and family along the way. Thank you all for stepping into our life…we couldn’t have made it without you!

Monday, July 7, 2003 12:54 AM CDT

NO VOMITING FOR TWO DAYS ----YEA!!! AND SHE IS EATING A FEW BITES – Life is good!

We went to clinic again July 31st, all of our numbers look good and our weight is 31 pounds (I wish MY weight was 31 pounds). All of the tubes are where they are supposed to be and we do not have a scheduled return clinic visit until 7-14, but we do go see a new pediatric physiatrist on Thursday to develop a plan for Botox, splinting and or casting. We also got a script for an electric wheel chair!

WELL, that was Monday. The vomiting started again Tuesday, we went in to see the GI docs, and they changed her meds and taught me how to vent her tube to try to prevent the vomiting. After I do that I leave the tube open and attach a bag tightly to prevent leakage. She started vomiting in the middle of the night Wednesday and as I struggled in the dark bedroom to get the bag off, I did the number one thing they told us NEVER to do…use scissors near the line…I even heard the instructors voice in my head as I reached for them. Weariness beat out intelligence as I accidentally cut her G/J tube. You can’t imagine how that feels when you know better and in that split second you make the stupid mistake that makes matters worse for the one you love so dearly!

I called the ER, and they said to stop all feeds and meds, tape it up, and if they could get someone in to replace it at 3:00 am they would, if not to come to clinic first thing in the morning and they would schedule CV radiology doctors to remove and replace. Well, we had the specialist appointment already scheduled for the morning and as long as it took us to get in there, I wasn’t about to lose that, so I went to work as soon as the nurse came, came home early and took her to the first doc, then drove 30 miles to the hospital for the tube replacement, got back around 7:00 that night. All of that, not to mention the trauma to her because I did something I was instructed not to do…I believe there is a lesson there! Trust me I learned it!

We had a super 4th in Excelsior on Lake Minnetonka, listening to excellent music, eating delightful food, and watching beautiful fireworks, with magnificent friends!

Tuesday, June 24, 2003 4:34 PM CDT

That nasty pic line continues to plague us; we were back in CV Radiology for a torn stitch on her the line (only two hold it in) on Wednesday. They treated her for a topical infection around the site that was also causing her great discomfort as well. It is critical to protect this line, as this is the last one she can have in this arm because the veins are so worn out. If it totally comes out they would have to do major surgery again and put the Hickman back in her chest. You can see how tiny her little arms are, and with the tubing coming out of the arm with the pump attached and out of her stomach with another pump attached, all of her stuffed animals and favorite glitter lipstick it makes her little bed rather crowded. Normal nighttime movement crimps or pulls either line disrupting flow and causing mobility problems and interrupting sleep.

Friday morning we discovered the new stitch was out again, so we secured it with steri strips called the clinic and was told we had to wait until Monday. Friday night we went to the Harry Potter party at Barnes and Noble with another car full of kids and somehow sprung a leak in the tube-feeding bag. I changed it when we got home in the wee hours, and was awakened acouple hours later when she screamed out in obvious distress that she had stomach pain. Upon examination I saw that the tube had pulled out about six inches (which meant the balloon inside her tummy had deflated or broken) and the site was very red, swollen and warm to touch. So as soon as the nurse arrived we were back to CV Radiology and clinic to have stitch put back in, tummy tube put back in and get a script to treat both site infections! Whew…when a tiny little six year old has to go through all of that and still can sing “It’s good to be me!” on the way home, it sure makes one feel guilty to complain about anything!

Mikaylah got a brand new bike with training wheels for her birthday last year, but was never very interested in learning to ride it. Despite a bunch of teasing last summer, she did hop on and ride around the block rather tenuously while I pulled Maddie in the wagon. In our new neighborhood, most of the kids ride bikes, but the pretty pink and purple bike stayed in it’s hiding place behind boxes in our new garage. When I asked her if she wanted me to dig it out, and help her ride it, she told me to whisper because she didn’t want anyone to know her bike had training wheels on it. The next day she dug out an old second hand bike from our garage and I watched as she steadily worked by herself to master it. Pretty soon, one by one her other neighborhood pals were there to lend a hand and advice, and shortly thereafter I heard her holler “Hey Mom look I’m doing it! “ as she whizzed by the window!

Tuesday, June 17, 2003 2:11 PM CDT

It was another busy week for us. We celebrated Dragon Boat Festival at a dance/song performance at the University of MN. on Saturday. It was fantastic! We spent the day with the Kwans, Suong family and their relatives. It took two vans to get us all there. We ended up for a late dinner at the MING WOK.Kwan’s restaurant. We have so much fun together, and the kids get along famously. The food is delightful Asian cuisine.

The Pam and Clark team came over to hang the beautiful butterfly curtains Pam made for the girls bedroom and then Pam, Mikaylah and I ran to Joanne Fabric to get the forms to make the cornice for Wyatt’s room and my bathroom. I am going to use the drapes and shears that I had on the windows in Ohio, but don’t fit here, as my fabric on the cornice.

We shared Father’s Day with the Kwan’s at a barbeque complete with Pork chops, sausage, corn on the cob, Vietnamese spring rolls, water melon and of course my Chinese Coleslaw. Their entire family was present and as always we feel like a part of it! Mikaylah wanted a Dad to celebrate with, and since I seem incapable of providing that, she decided we needed to purchase a Father’s Day gift for David Kwan, Kristina’s husband (and because Kristina does so much for her, and us, she wanted to get something for her too). Some of our other neighbors joined us and a good time was had by all. One of the aunts said, “Every time I see you, you are eating! “ Which is true, so we decided we needed a girls night out for a relaxing massage and a pedicure, and of course,lunch,target date is June 28th. We have more room if anyone out there wants to join us?!

We spent the day at Fairview Hospital/clinic Monday for an infection around Maddie’s pic site and vomiting/gagging and choking during the night. It is always a terrifing experience to be jolted awake by crying, panic immediately sets in as I stumble from my bed to see what is going on. But words can not adequately describe what happens to my heart when her little body is tormented by violent, retching that partially gets trapped in her esophagus/lungs making breathing difficult or next to impossible. The look of terror in her little, black eyes makes me question my faith! I sing to her and snuggle, trying to calm the fears with words I don’t really believe myself. It is a pain for me that no medicine can take away…

Monday, June 9, 2003 4:27 PM CDT

Continued words of gratitude to more folks that have shared this journey with us with selfless support and love: Janet Mitchell for calls, gifts and love when her own plate is overflowing, ditto for Bev Martin, and Diane Taylor whom I met for the first time in China when I added Mikaylah to my life. She has been a good friend in our life ever since, even traveling here to visit with us when we were hospitalized. Thank you to everyone (if I haven't mentioned you by name, it is not because I am not grateful...) and know that acts of kindness are the greatest gift of all.

Sunday night Maddie woke up screaming that her IV pic line had pulled out, stitches and all. I stopped the bleeding, shut off the pump that was pumping into her bed, and called the hospital since she is still getting feed TPN through it 12 hours a day. Despite her need to replace it quickly, the first open surgery date was the 9th- but if she was inpatient it would be done ASAP! Go figure! So we had that done and the doctor said it took twice as long because the veins in her arm are destroyed from all of the blood draws – This will be the last pic line in that arm!

The Pediatric Research Black Tie Gala was a huge success, not to mention a ton of fun. All of my neighbors helped to dress and make me presentable, actually, I felt like Cinderella going to the ball! They arranged a manicure and a pedicure, and Kristina did my make-up. I got my hair done, but we changed it alittle to look more like ME! They even filmed it all as if I was going to my first prom. I even drummed up the courage to go all by myself where I sat at a table with 9 folks I had never met…talk about nervous stress! Then I put it all in perspective, most of the attendees didn’t even know me, and the ones that did had only seen me previously in Maddie’s hospital room, in wrinkled clothes from days of wear, no make-up, and bed hair…so I looked like a beauty Queen compared to that. Almost a million dollars was raised for Pediatric Research helping us to find a cure for MLD!!

We had clinic today. She gained another pound, and most of her counts were good. Electrolytes were more in line, hemoglobin is a little low, as was the RBC and WBC. Her platelet count was 345, that is a good thing. She is finally off of the antirejection med tomorrow, and some days her tremers appear less. Occasionally she will put a piece of food in her mouth all by herself and she helped us make cookies Sunday. She ate a whole piece of toast, dipped in tomato soup, for the first time in a year. She threw up the soup in the wee hours, but the toast made it through! She ate one little pizza thing from a lunchable on Friday night too! She is still under 30 pounds, but I can tell a difference when I carry her, and her hair is shiny, looks healthy again, and is not falling out anymore from malnutrition.

They measured her for splints, which they will use much like the casts we did before moving. They will stretch her as much as she can handle, splint her for a week, and then splint her again. We now have a script for OT, PT, and speech 5 days a week this summer, if we can find someone to do it! I am working on that currently! Pray that I find folks to fill the positions.

Thursday, May 29, 2003 12:23 AM CDT

What a wonderful weekend! The weather held out, Maddie was feeling well and in fine spirits, and we shared quality time with so many very special friends! We explored several beautiful spots in our surrounding area: a kid’s park, Lake Minnetonka and the quaint little town of Excelsior, with Kristina Kwan and her children, Soung and her children. We had a fantastic meal of Asian cuisine for lunch and an even better dinner at Kristina and Dave’s restaurant, Ming Wok! We lay on our new deck with the warm sun on our faces and we had a delightful holiday meal with/prepared by the culinary King and Queen, Pam and Clark Cummings. The basement was flood free for the weekend, and all of the toilets worked…life is good!

Again I need to emphasize the importance of family and friends both new and old in our lives. Sometimes we don’t realize that even the smallest things make a difference to a family in crisis, whether it’s an offer to pick up groceries or supplies (thanks Kelly and Lisa) at the store so I don’t have to drag the kids out, hooking up my stereo/DVD/VCR components (thanks Brian/Kelly), cooking and baking special delectable dishes, (thanks to the Kwans, Suong, Kelly, Cummings, Lisa) (The Kwans make special Chinese dishes DAILY for Maddie in hopes that she’ll eat and gain weight, child care, (Donna, Sam) support and extra hands with feeding, hair washing, general moving and transport (the whole neighborhood and Donna – thanks so much) and the visits and support of all the kids in the neighborhood that love her, play with her, and make her laugh! The visits, the calls, the emails are so very important to our mental health, and I need you to know how many of our days the support of all of these things is what helps us make it through the most difficult days. Anni Condon, Rob/Ria Prange, Robin/David Booney, Janet McKee, Adrienne Saunders, Ann McCausland, Dr. Mark Harris, Lisa Richards, Tammi Osterburg, whose emails, calls, unselfish giving of gifts, time, spreading the word of the illness, need, and just plain all out support that keeps us upbeat and positive. And of course my family (Dick/Jeanie, Deb/Jame, Mom, Lia/Dave, Julie Walker/Julie Long, etc.) back in Ohio for their encouragement, gifts, and love…I thank each and everyone of you! Of course,to all of the other folks to numerous to mention, (you know who you are who given in so many ways) I thank you from the bottom of my heart for caring enough and showing it! I love you ALL for making a difference in the lives of my children and myself!
Maddie’s clinic appointment was a good one. Counts were good, and best of all she gained 4 pounds! The heel cord tightening has become more of an issue, while the botox did help the muscle tone, it is not meant to help heel cords, so now we will be doing serial splinting weekly this summer to deal with that. The summer OT, PT, educational schedule is being worked up currently, but one thing we know for certain,she will be a first grader next year!

Thursday, May 29, 2003 11:42 AM CDT

What a wonderful weekend! The weather held out, Maddie was feeling well and in fine spirits, and we shared quality time with so many very special friends! We explored several beautiful spots in our surrounding area: a kid’s park, Lake Minnetonka and the quaint little town of Excelsior, with Kristina Kwan and her children, Soung and her children. We had a fantastic meal of Asian cuisine for lunch and an even better dinner at Kristina and Dave’s restaurant, Ming Wok! We lay on our new deck with the warm sun on our faces and we had a delightful holiday meal with/prepared by the culinary King and Queen, Pam and Clark Cummings. The basement was flood free for the weekend,the siding hasn't melted off, and all of the toilets worked…life is good!

Again I need to emphasize the importance of family and friends both new and old in our lives. Sometimes we don’t realize that even the smallest things make a difference to a family in crisis, whether it’s an offer to pick up groceries or supplies (thanks Kelly and Lisa) at the store so I don’t have to drag the kids out, hooking up my stereo/DVD/VCR components (thanks Brian/Kelly), cooking and baking special delectable dishes, (thanks to the Kwans, Suong, Kelly, Cummings, Lisa) (The Kwans make special Chinese dishes DAILY for Maddie in hopes that she’ll eat and gain weight,) child care, (Donna, Sam) support and extra hands with feeding, hair washing, general moving and transport (the whole neighborhood and Donna – thanks so much) and the visits and support of all the kids in the neighborhood that love her, play with her, and make her laugh! The visits, the calls, the emails are so very important to our mental health, and I need you to know how important all of these things are to our quality of life! Anni Condon, Robin/David Booney, Janet McKee, Adrienne Saunders, Ann McCausland, Dr. Mark Harris,Lisa Richards, Tammi Osterburg,Diane Martin,whose emails, calls, unselfish giving of gifts, time, spreading the word of the illness, need, and just plain all out support keep us upbeat and positive. And of course my family back in Ohio for their encouragement, gifts, and love…I thank each and every one of you! Of course,to all of the other folks to numerous to mention, (you know who you are who have given in so many ways)I thank you from the very bottom of my heart for caring enough and showing it! I love you all for making a difference in the lives my childrenand myself!

Maddie’s clinic appointment was a good one. Counts were good, and best of all she gained 4 pounds! The heel cord tightening has become more of an issue, while the botox did help the muscle tone, it is not meant to help heel cords, so now we will be doing serial weekly splinting this summer to deal with that. The summer OT, PT, educational schedule is being worked up currently, but she WILL be a first grader next year!

Monday, May 19, 2003 3:53 PM CDT

When Maddie was diagnosed with MLD I searched for and read everything I could get my hands on. I then packed it away in a file for reference, and only pay attention to research and finding a cure. I never met another child with this devastating disease and decided the more I knew about it, that I did not want to. I had seen the twins in Maine on TV who were in very late stages of the disease and still have nightmares about that very sad situation. Once we traveled to MN and I shared my love and life with so many families at the RMH my emotions were on a roller coaster out of control. Living with the loss of so many precious children during our stay there was difficult to say the least. The only way I could maintain a positive outlook was to keep telling myself that our disease was different. I admired my many friends there who formed a bond with a family who shared their child’s disease and applauded their ability to remain positive and appear fearless. I wasn’t sure I could maintain a positive attitude while children with the very same disease were in pain, deteriating or dying.

And then it happened; I met the Trimper family who has three young children with MLD, and the Viscomi family with a son with MLD. I quickly realized I didn't have to do this alone, that there is tremendous comfort in being able to talk to people that understand my reality. Now I know more families to help take up the fight for the cure, and we can get visibility/attention from the medical community to help save these innocent young lives. Granted there are tradeoffs, and heartache, but there is also beauty in the new friendships, celebrations of success, and a sense of camaraderie as we fight to conquer. I don’t find myself comparing Maddie’s condition to the other children, the same as I never compared my pregnancy for Wyatt with anyone else’s. I concentrated on the beauty/joy and the miracle of life and my ability to accept my role in it. I never wanted anything more in my life than children, (13 was my goal) and I never loved anyone more than the 3 I’ve been blessed with!

Saturday night is the big Pediatric Wine Fest fundraiser. As luck will have it I will be going to the Black Tie dinner (thanks Sandy), but what to wear!? A fancy gown is hardly the attire I've worn lately for trips to Fairview Hospital or McDonald’s But not to worry, Friday night my wonderful new neighbors solved my dilemma. Several gorgeous dresses were offered, as well as a mink wrap and an offer to do my make-up, can’t get any better than that! Well, actually it can, Kristina Kwan, my newest neighbor acquaintance, not only brought over dresses, but had her mother-in-law make Congee for Maddie which she immediately dove into and ate more of than anything else in the last 6 months! It’s friends new and old, and family that keep me positive, thank you all for showing how much you care! (Cookies were great Kelly and Robbie!)

Thursday, May 15, 2003 3:05 PM CDT

I HAVE HELP!!!! Physical help with Maddie that is, which quite frankly, has done wonders for me mentally. I now have an LPN and a nurse that take turns taking care of Maddie while I work. The extra set of hands and the knowledge/skills that they have is both a comfort and a relief. For the first time in 3 years I have someone to go to Clinic with us, help with meds, line care, mouth care, dressing changes, tube and pic feeds, etc. I even got to sleep in 15 extra minutes this morning!

Our clinic appointment on Monday still shows that she is not getting enough calories or nutritional value despite the TPN and tube feeds. Her potassium was high and her BUN was high, her hemoglobin was low, but her WBC and platelet counts were good. They adjusted the vitamin content of her TPN in hopes that would address potassium and BUN levels, and I am supposed to slowly increase the tube feeds volume. She is currently at 26cc 24 X 7. Her spirits are good and she was having a swell old time pulling on Dr. Peters tie that we had given him. She and I had a bet that he would notice her new hair do, and he didn’t disappoint us as he made a big fuss about her hair and nails. He agrees that she doesn’t miss a beat intellectually and her sense of humor is a delight. Her long-term memory (sometimes to my chagrin) and her ability to bring things up in appropriate situations makes one think she is older than she is. Her weight, less than 26 pounds make her look like she is three instead of six. She is still singing up a storm, and it never ceases to amaze me the songs that she has memorized.

The good news about our new home is we love it. The neighborhood is full of kids and kind and thoughtful transient neighbors. We live in a beautiful, quaint little town of about 18,000 and the brand new elementary school is right around the corner. The school has 585 students and 89 staff members, is very diverse and offers tons of kid/family friendly activities/opportunities. The Community center right down the street is brand new, big, beautiful and also has tons of activities we soon hope to enjoy, including swimming. The bad news is, we are having toilet trouble, my siding on one side of my first ever, brand new house is melting/buckling, and Sunday night my sump broke and flooded my basement that is still full of unpacked boxes from the old house! I ask one of my co-workers to go to lunch with me the other day and he was afraid to for fear he would get struck by lightening since I have such bad luck!

Friday, May 9, 2003 11:04 AM CDT

Some folks have weekend getaway homes; so do we, Fairview Hospital. We call it our Fridays at Fairview Excursion. WE are in the ER more than George Clooney these days! At Monday’s doctor’s appointment they instructed me to turn up the tube feeds because she wasn’t getting enough to sustain her, so I did! On Thursday and Friday she started vomiting and diarrhea eliminating all that I was quickly putting in until she was once again dehydrated! She even lost a pound, which she can NOT afford to do, sooo, back to the hospital we go. The decision was made to slow and water down the feeds and to put a central IV line, called a pic line in her arm. She had surgery to do that on Tuesday, so that now I can give her feeds, including lipids and vitamins that way as well as the tube feeds to try and get her weight up. She got more Botox on Wednesday as the first dose the Monday after Easter was conservative per the doc. PT saw some effect on her tone, but hope what she got this week will make a bigger difference. We were released on Wednesday.

We have been asked to be one of the families featured at the weekend Pediatric Research fundraiser the end of May in downtown MN. A photographer and a reporter came to the house to do the story and the photos for the program. Donna, Queen of Do’s, did her marvelous hair sporting pink and white bands to match her dress. She captured the heart of our guests as she posed each time the camera was pointed in her direction. Her spirits are good, and her determination to beat this is never faltering as she asked me, “If I eat 3 bites of this pudding will I get better?” She actually did eat one whole fried shrimp from the hospital cafeteria this week – who would have thought?!

In 5 or 6 weeks they will replace tummy tube with a brand new, less intrusive one that lies flat to the stomach, instead of having a 6-inch tube with clunky big ends on it.

Tuesday, April 29, 2003 4:37 PM CDT

Once again I am way behind in my updates, and I apologize to all who follow so religiously! It does my heart good to read that so many do follow our updates, I appreciate that!
We have been in the hospital again for the last week and a half or so. We celebrated another holiday there; pretty soon I think we will have them all covered. The good news is so many do so much so she is not forgotten on those special days.
She had been throwing up and choking on her feeds, and in the middle of the night I had great difficulty getting her to breathe through one of those episodes so I rushed her to Fairview. After several different tests, what I had seen and experienced was confirmed that she did have reflux and could choke on her own saliva, feeds or food. So they removed the NG tube and did surgery on Saturday to put a tube in her stomach and one in her jejunum, one for feed and one for meds. The J tube goes past the stomach so vomiting should be kept to a minimum. She is still very tiny and feeds through it must now be 24 X 7 to get her nutritionally sound. She did eat a couple chocolate eggs, but not much else. She also got Botox injections in her legs before we were released to see if it relieves the stiffness enough to get her back on her feet again. Time will tell. I need answers from someone to know if I am doing the right thing with those because it breaks my heart to hear her cry with pain at each/all the painful procedures she already goes through. Her counts are very good…that is a blessing!
Our sweet little Jake Schmidt lost his valiant battle over the disease that ravaged his small, frail body on Easter afternoon. I loved that angelic little guy that never complained or acted like he had a care in the world. He fought a vicious battle that most will never know, and did it with the courage and valor of a true hero. He never gave up and neither did his 26-year-old brother Steve, who played the role of two parents! He was there for him in every sense of the word and is a role model I wish you all could meet. These are the heroes in my world who fight daily for just one more day, in hopes with it will come a cure. I love you Jake Schmidt, and I will miss your little hand in mine forever!

Wednesday, April 9, 2003 11:31 PM CDT

Hallelujah! At long last Maddie has been approved for disability benefits by the great state of Minnesota! We are now eligible for nursing care, respite care, and some light housekeeping. The county is working to hire an RN at this very moment. I have to supplement with my own income but it is well worth it!

We are spending the night w/friends at the RMH so I can take her to the clinic early in the morning before I jet off to work. Her NG tube is giving us much grief and depriving us of precious sleep. She is throwing up and eating seems to aggravate the problem even more. She complains of a sore neck and throat. She wakes up crying in obvious pain, screaming, and stiff. It is awful! What hurts the most is the feeling of helplessless when she is going through this. We hope to get some answers tomorrow.

I want to share something really cute with you. It's a virtual smile quilt. It was a gift from Janet McKee. Thanks, Janet! The address is http://smilequilt.com/maddie.html Feel free to add a square, we'd love it!

So, until next time...only 999 more boxes to unpack, progress is a beautiful thing! ;) Much love to all, Pat & the M&M girls!

Thursday, March 27, 2003 1:55 PM CST

We had our clinic appointment on Monday with Dr. Peters. Our WBC was 7.4, Platelet count was 436k, hemoglobin was a little low at 9.6, but our kidney function stuff was good. I am still not very hungry so the feeds continue at 60cc an hour for 12-14 hours. They actually want to go up to 80cc, but Mom says I will blow up if we do that. I am eating a little of my favorite things, and Mom and Mikaylah continue to pressure me to do that. It is quite fun actually as I get any food/candy I want any time day or night (who says I am not spoiled)! I am not drinking my usual milk input daily either, so that is a concern as well.

We went to work with Mom after clinic (Mikaylah is on spring break now, so she is home too) and I feel asleep while Mom worked. Mikaylah drew on the white board. We got home about 8:00 pm that night and when Mom picked me up to carry me inside she freaked out…my NG tube was hanging improperly out of my nose. It looked to her like half of it was missing and was still in my body somewhere, so she rushed in to call the hospital. The nurse in ER wasn’t following Mom’s description of the details, so Mom just gave up and raced me to the ER 30 miles away. Not to worry they said as they checked things out…easy for them to say! So they pulled the old tube, and jammed another one down my throat...I just hate when that happens! We got back home about midnight, I slept all the way and went right to bed when we got home. Mom fell asleep on the comfy, comfy green chair with her work clothes on. Needless to say, she didn’t get anything unpacked again tonight.

Wednesday, March 19, 2003 12:47 AM CST

WE spent another birthday in the hospital here. Maddie was having difficult time breathing and could hardly hold her head up on Monday the 10th, so I rushed her to the ER. We were admitted with pneumonia and a fever. It went from bad to worse in the middle of the night when I woke to hear her really struggling to breathe, and a fever that went from 100.4 to 103 in 20 minutes. I screamed for help while pressing the call light and they called the code team to administer oxygen and whatever else needed. She was so out of it, her eyes unable to focus, and didn’t even appear to know who I was. I was up on the bed with her for what seemed like hours before she was once again resting with the aid of oxygen. I must admit that I have had many sad and scary moments these last three years, but none worse than this one!

We remained in the hospital all week and they did a lumbar puncture, CT scan and chest x-rays. The Puncture and scan showed nothing, but the pneumonia was confirmed. She was on IV fluids and meds all week besides the escalated tube feedings. She was released on the 17th with new meds and inhalation nebs added back into our med regime. Since she is not eating, they have changed her tube feeds to 60 CCs for 14 hours a day. We were supposed to get botox injections at another hospital on Tuesday, but that had to be postponed due to her illness.

The bright spot, besides all the help we received here from new and old friends alike, was the very special gifts she received form her favorite troubadour RAFFI. He made a birthday video especially for her and as her sang out her name everyone in attendance knew no med could have helped her more! Thank you Anni Condon and of course RAFFI for making her 6th birthday so very special.

Friday, March 7, 2003 5:00 PM CST

Monday's doctor's appt. was even better than our last one. Dr. Peter's said I never looked prettier...he is such a flirt! Mom says I am at the top of my game, whatever that means. My weight was 12.5k, my platelet count was 380,000, my WBC was 11.6 and my HGB was 10.5. My kidney function numbers were so good Dr. Peters drew smiley face kidneys on my lab reports. My electrolights were very "bright" as well he said!
We don't have to go back until March 31st!
We are scheduled for Botox injections on April 11, and look forward to the effects of that.
Mom is still working on funding from the state which would help with the medical bills as well as child care and equipment.
A busy weekend ahead for us as we have a carnival at school tonight,famous Clark's homemade pancakes after church on Sunday AND we got the LOGE at the Target center Sunday night to see Disney's Princess Show...I am so excited!

Wednesday, February 26, 2003 5:32 PM CST

Wednesday, February 26, 2003

The party was a huge success! I honored Jakes’ request for Dr. Pepper, Pickles, and Popcorn, his face lit up when he saw it! Our dear friends from RMH, The Nadeau’s, and the Martin team from West Virginia came to join the fun. The next morning as special order cook Nadeau rustled up some breakfast, GE friends who came ready to work joined us. Amazingly enough no one seemed to mind the confusion, noise or general chaos. IT was so awesome to hear the laughter of sick little kids finally getting a chance to be just that…little kids! Jake had so much fun; he asked to stay another night!

Maddie has not had a doctor’s appointment since our last update, but has one on the March 3. Her appetite has not increased, so I continue to feed her by pump at night. I offer a variety of delicious beverages (at least that is what I tell her) and any food she wants, but she continues to just nibble. She does love her SunChips; I even splurged and bought her fresh red raspberries.

We are working on a new IEP and am still waiting for state aid. I talked to them today and my financial aid said she was taking my case to the state tomorrow for review. Pray for that

Tueday, February 11, 2003 5:16 PM CST

SUPER NEWS! I went to clinic on Monday and my counts were STELLAR, per Dr. Peters! WBC 10.6, Hemoglobin 11.1, kidney functions down and normal, CO2 and creatinine were perfect and I gained a little weight…12.2k now! SO that means, as much as Mom and I dislike the nightly tube feeds (45 cc 14 hours a day), that, in conjunction with the meds, is working! We don’t have to go back to clinic for two weeks. We do have an appointment Friday with a GI specialist as a follow up from the hospital stay last week. We are also waiting for an appointment for Botox injections as my leg muscles miss Kira and are very tight!
Boxes, Boxes everywhere and not a place to sleep…
Ria left on Tuesday after working with Mom to put away or throw away our all of our packed belongings! Quite frankly, as much as they got accomplished, we still have a long way to go! Ria worked at record speed sorting stuff for a big garage sale and silently vowing to never volunteer when Mom moves again! The decorating team of Pam and Clark came on Saturday, made Chili, hung pictures, made major window treatment decisions (I can’t wait until that is done as we have to undress in the dark now so our neighbors can’t see us), and looked at furniture. Trips to Home Depot were almost as frequent as my trips to the potty. We now are on a first name basis there and they give Mikaylah and I candy every visit. Mom feels guilty because they don’t have GE stuff any more, but where is Lowe’s when you need them. One of the men there flirts with Mom when he thinks we aren’t looking.
Kindergarten started in the home, as well as OT, PT. last week. The county health nurse and a social worker visited to help Mom through the arduous, intimidating process of applying for medical, equipment, and respite assistance. They seemed positive and all of our docs are submitting paper work to help us. Keep us in your prayers on that level too!
Mom and Donna are planning a Valentine’s Day slumber party at our house this weekend, I sure don’t know where everyone will sleep with boxes everywhere. We are hoping that Jake will get permission from his docs to come!

Wednesday, January 29, 2003 at 11:01 PM (CST)

We are out! I am back at the RMH tonight finally. I was actually released on Tuesday night, but started wheezing, and couldn’t catch my breath as Mom carried me to the elevator. She quickly ran back to the unit where they re-admitted me, hooked me up to the breathing machine, oxygen and the pulse-sox machine all night. They now believe it was caused by the pentamidine inhaler I had earlier in the day. Mom is not buying that since I have been in the hospital 3 times in the last three months for the very same thing. Mom says we love our docs, and they are brilliant, but …
I have 5 new meds, and a feeding pump which will run 45cc, 14 hours a day delivering food to my tummy. I am trying to eat, but don’t have much of an appetite, and still throw up some! Mom even lets me eat anything I want! Dr. Charnas shared his sun chips with me, oh how I love those.
Mom continues to work to get home schooling, PT, OT and speech for me. She is also working to get some state and federal aid as the bills continue to mount. She ran ads for child care and has many great candidates, but continues to worry about leaving me with someone, as well as the cost for a more qualified person.
Ria is coming in tomorrow to help her unpack so that we can perhaps move into our new home. Mom’s friend Pam is in charge of curtains, and décor, and Mikaylah and I will just give direction. The “movers and shakers” did an excellent job unloading and putting our beds together for us, but the girls have a lot of work ahead of them! Any volunteers out there?
Yum! Bangor Taffy from Maine thanks Bonney family! The Henry and David stuff was tasty too…Thanks Ann!

Sunday, January 26, 2003 at 10:52 AM (CST)

Fairview Hospital 5b 224
She lays crossways in the bed, the back up high, surrounded by pillows. Her thick brown curly hair streaked with red (just like the day I first met her!) fanning the pillows she loves to sleep with. Her beautiful. long thin fingers are painted bright red to match her toes and sport a ruby ring, a gift from Brooke. Her hand is taped to the IV board, the NG tube in her nose sends 45 cc an hour of vitamin enriched supplimentto her tummy. She is asleep now, but minutes ago she was singing her favorite songs with some of her buddies from the RMH. Her voice melts your heart, her smile lights up my life! I can't remember not loving her...or any of my kids for that matter!
It's 2:30 am, she woke up vomiting, tube feeds are stopped, she needs a bath and clean sheets, hopefully they will find answers today.

Saturday, January 25, 2003 at 12:28 PM (CST)

Well, all of our stuff from Ohio is safely moved into our new home in Chaska,MN., but I have been in the hospital sine Monday so we haven't slept there yet! The good news is that since it is so cold outside this is probably the best place to be. I had a fevor on Monday night so they admitted me, then Mom came flying back from her business trip in Miami to be with me (the temperature went down to 37 after she left so she wouldn't feel so bad about leaving). I was dehydrated again, even with the NG tube feeds. So they are doing tests to figure out why I am not absorbing what little I do eat,and what Mom suppliments in the tube. Adrennial glands checked out ok, GI tests showed alittle small bowel irritation, but so far that is all. My weight is finally up over 12 kilos, but I am now getting IV fluids, plus continual formula feeds through the pump. My favorite docs and nurses have all been to visit me, and Dr. Charnus is arranging for botox injections in my legs when I get out.
Mom is still trying to find child care for me, so we can move into our beautiful new house in Chaska. It is a 2 hour commute each way to get MEL in school and out each day. She put ads in papers,a nd has contacted several folks trying to find someone. No sign when we will get out of the hoopital this time.
Your prayers are working...Little Jake is doing better than ever expected.

Wednesday, January 15, 2003 at 10:08 PM (CST)

I had to go back to clinic today because my kidney function numbers were not very good on Monday. The good news is they were alittle better today, but not good enough to keep them from putting feeding tube in my nose! I hollered when they stuck me 5 times for the blood draw, and I made sure they knew I was not happy about that darn tube either. (Mom says that is the hardest part of this whole deal,knowing that what they are doing for me is for my own good/necessary, but seeing me hurt so much hurts her too!) Katie and Dr. Peters say I have to have at least 2 cans of Boost/Ensure or valuable liquid a day through it, more if I don't eat/drink more. My WBC, hemoglobin and Platelet counts were all good, so Dr. Charlie feels this is just a bump in the road...
Mom says to note our new address and home phone number on this page and says we will update the email as soon as she remembers what her new one is. We still are not in our new house, but it sure is marvey! The van arrived here today, it's a good thing before Mom has another accident with the rental van! WE miss and love you all!

Tuesday, January 07, 2003 at 07:22 PM (CST)

To say it has been another crazy week would be an understatement, but it seems that every time I update this I have the same excuse. Pretty soon you won't believe me!
We were in the hospital in Cleveland all last week with a repiratory virus again. Her counts remain good but she was very dehydrated with this awful respiratory thing that made breathing very difficult, and eating and drinking not fun and not happening. We were released at noon on the 6th to fly to the hospital in Minnesota, and despite the blizzard in Cleveland we made a late arrival here. We missed our first connection, but Skyway Airlines came through for us, held the plane and had folks waiting to assist us with the transfer to the other plane. We met the doctor on call to check her status and then went to clinic for IV fluids and a breating treatment this AM. Her counts today were 330 platelets, 10.5 hemoglobin, and 8.5 WBC. Creatin was still a bit high. We will have standing weekly appointments at clinic with Dr. Peters until we get back to normal.
We are staying at the RMH with Donna and her gang until I get the movers set up, child care arranged, and girls schools sorted out. Suddenly I seem overwhelmed with the enormity of it all, and struggle to maintain my composure. I wish I could wake up and everything was all settled...is that possible?
I arrived to find our good friend Alicia Osterbur failing fast. She is an an 11 year old sweet heart with AML and often found in pictures on our website. Her baby sister was born here at RMH, and is fondly called the house baby, she is now a year and a half. She will always be a part of our family and the memory of her giggles and pranks will be etched in our hearts forever!

Wednesday, December 11, 2002 at 10:38 AM (CST)

12-11-02

Buying and selling a house, keeping the old one clean, traveling for new and old job, and Maddie having pneumonia and being hospitalized in Cleveland for a week has truly kept us busy! Did I mention the babysitter quit on the Sunday before my early Monday morning, (before I am awake flight) to MN? Life is never boring or slow in the Lang household! All I want for Christmas is a cure for Maddie and tons of sleep!!

The good news is that I did find a house here, in lovely Chaska,MN, on Monday night. It is marvelous! Nice kid friendly neighborhood, cheap association fee ($75) to cut my grass and remove all the snow they supposedly have here, right next to brand new elementary school, and a beautiful new recreation center! I am not sure they were ready for me, as I bought quickly, made them do the paperwork that very night (we finished at 11 pm) and told them I want to close on the 27th of this month! I figure the sooner I can close, the sooner I can get the girls here and in school and perhaps have a life as close to normal as it is ever going to get!

Maddie was hospitalized the week before Thanksgiving with pneumonia. I experienced perhaps the scariest occurrence of this journey ever when she went into respiratory distress in the ambulance on the way to the hospital. To be a mom, and to be absolutely helpless, with those terrified little eyes looking up at you for help is the most heart wrenching experience I have ever endured. We were rushed to PICU at Rainbow Babies where we stayed overnight to get her breathing under control and IV fluids. We moved to the BMT unit the next day and were there for a week. I had to work in MN the next week, so I just flew her here with me and Donna Nadeau at the RMH babysat for me while I worked. We actually stayed at the Ronald McDonald House and I commuted to and from work utilizing the Prangemobile! Where would we ever be without such wonderful friends??

A warning ahead of time…chances are that your Christmas cards from us will be late, but considering that I don’t think I sent any last year, that puts me ahead of 2001 accomplishments, right???

Monday, November 04, 2002 at 09:31 AM (CST)

SHE WALKED!

Imagine my surprise when I came out of my office and did not find her sitting where I had left her. I had put her braces on, and she had been strectched by me and two other therapists earlier in the day. I left the walker by the couch, and she was in the living room watching her cherished Raffi video while I was on a conference call. At the end of the call, when I walked into the family room there she sat, walker in front of her, patiently waiting for me to finish and fix her some lunch! She not only walker with that walker( Thank you John and Dayna), but navigated the furniture, doorways, and then turned it around, backed up and sat on the couch with no other help!

All of your support and prayers made this happen. You have kept our spirits strong and our attitudes positive, thank you. It is the first time she walked without human assistance in over a year!

Saturday, October 26, 2002 at 05:24 PM (CDT)

We are currently in Minnesota for Maddie’s one year check up following her bone marrow transplants. She has had several tests so far, including an MRI of the brain to determine if there has been any progression there since the last one in April. I am thrilled to report that there has been none! Her counts were great as well. We see more doctors for more tests on Monday and Tuesday, including Neurology and her eye doctor, and Neuro Psych. The tremor in her eyes seems inconsistent, but always there. And she has great difficulty some days keeping the left one open. I am hoping we will have answers to those conditions by Tuesday. She is also losing all of her finger nails, and still has some very uncomfortable mouth sores. They will test for fungus on Monday. Todd re-worked her old braces with a new design that makes them easier to get on and stay on. Everyone is pleased at how good she looks, especially with her long, curly hair. She continues to capture all she meets with her irresistible personality, precious, robust laughter, and her independent spirit.

We had a fantastic, but as always to brief visit with our dear friends Rob, Ria, Rick and Oma from Holland. We traveled 6 hours North in MN, for four wonderful days of beautiful scenery, laughter, relaxation and togetherness with our friends that share a common bond with us. It is amazing how out of such grief and sadness, the beauty of friendship is born and a family like bond is built and blossoms.

The great news is that I have accepted a new job with GE Capital Fleet here in MN. And will be moving here as soon as arrangements can be made. The sadness at leaving our family is eased by knowing that I will be minutes away from the doctors that will one day find the cure for Maddie’s disease. We will no longer have to make the 2 hour trip to Cleveland for competent medical care. We will live in a state that is the pioneer of International Adoptions, with an International Adoption Clinic in the same hospital as all of Maddie’s doctors. It is a very culturally diverse area that has a huge Asian population and many opportunities for Maddie and Mikaylah to grow up/around kids that look like them, as well as tons of other adopted kids. Yes, it does get very cold here, and I am told the snow gets very deep, but that all pales in comparison to the warmth I feel in my heart knowing that this is the RIGHT thing to do for all of the RIGHT reasons.

Friday, September 27, 2002 at 06:50 PM (CDT)

September 26, 2002

The good news is that the GVH of the skin that Maddie had is finally fading away. She continues to have mouth sores from it that cause her pain and frustration. The bad news is that her eyes have also been a real source of irritation, itching, burning, redness and the worst part, a change in the Nystagmus, or tremor of the eye ball itself. She even at times appears to have a problem keeping her right eye open. There is not a clear cut indication of what her sight is like in that eye at this time either, which scares me. We leave for our annual check up in Minnesota on 10-16 and an eye appointment as well as an MRI is scheduled which may help us understand that.

The other good news is that the serial casting/and the Botox injections did truly increase her mobility. She crawls, scoots and walks a little with the help of her braces and a walker, although the braces need re-made and that will also be addressed in MN. I put her on the “big” toilet the other night while I blew Mikaylah’s hair dry in my bathroom, and unbelievably she got herself down and crawled across the hall and into the bathroom where we were to join the action! Despite all that she has been through, she still continues to be motivated to be independent; she is my hero without a doubt! I continue to be overwhelmed by her determination, beauty and sense of humor. My greatest pleasure is standing at the bottom of the steps after I put them to bed at night and hear the two of them talking and laughing themselves to sleep. I wish everyone could feel that kind of love!!

She started kindergarten with a tutor at our house and looks forward to it everyday! She loves it! She begs for homework! PT and OT also come 2-3 times a week to help her.
I worked with her school team to come up with her IEP plan of education which will include PT, OT, and speech if we can get it. Problem is Ohio is way behind in its benefits for handicapped kids, so they only want to provide the bare minimum. I also feel like she is being slighted because I work and have insurance. Kira, our PT buddy, found us a parent advocate form the county who, despite having a huge territory to handle, will help us navigate the sea of handicap laws, benefit eligibility, etc. She is a Godsend, it’s a comfort that she not only knows the laws, but also shares our reality with a very special 7-year-old son of her own.

If the weather cooperates we will go Kayaking with our new boat, (compliments of the Booney’s and Lisa Walker) and our new Paddle and PFD’s compliments of Diana Dowd. Wish you all could be here for that…

Friday, August 30, 2002 at 09:18 PM (CDT)

8-30-02

It’s hard to believe that summer is almost over! Mikaylah started school last week and Maddie started in home tutoring for kindergarten today. She wants to go to “real” school, but we will wait until our one-year check up in October for approval. She can hardly wait to do homework, imagine that!
She has had a real rough time with GVH of the skin this past couple months. It has finally settled down as we are back on prednisone and anti-rejection drugs. The prednisone gives her a good appetite which makes me very happy. They experimented with Botox injections into her calf muscles two weeks ago to try to loosen the muscle tone and get her back on her feet. She currently cannot stand due to increased muscle tone that pulls her heel cords up into a ballerina type position. It truly was like a miracle! We were on vacation the whole next week with friends all over New England and each day I could see a change for the better in her spirit and her mobility. Physical Therapy stretched her legs as much as she could tolerate on Monday and casted each leg to hold the stretch. Those casts were on for 4 days and then removed for further stretching and recasting all a part of the Botox process to get those muscles relaxed and feet back on the floor so she can attempt to walk. She actually crawled up 22 steps the other day without any help. Today she walked with the casts on and had better posture and body control than she has had since before transplant number 2.
I have said it many times before, but it truly bears repeating, I may be single, handling all of this, but I know I am never alone in spirit, support or love of family and friends. I continue to be overwhelmed by the generosity, love and kindness shown to us by so many. Our vacation last week was possible because of a very special single adoptive Mom, Anni Condon and Amariah, who gave us the FF miles to get there and the lovely place to stay on the lake. And my other good friend, and adoptive Mom, Adrienne, who opened up her very full household to us as well. And then there was the sleepover with my dear friends and adoptive parents Robin and David, with Sarah and Becca. We got to also finally meet Lisa who has followed our web page and sent gifts to us throughout our stay in MN. And then there was the beautiful evening on the beach in Kennebunkport, watching the sunset, with close friend and supporter Anne and her beautiful adopted kids, Kim and Conor. Diane and Bevie our good friends from Cape Elizabeth whom we have known and loved for years were there too. And we could not forget our visit with Diann, Joe (the bracelet maker) and Nina, and our favorite Dr. Mark, without him in our life, Maddie’s disease may still be misdiagnosed. And to our new friends at the Holiday Inn Express on Snow Road, who made the crazy trip home, a distant memory with their extraordinary customer service and family like attention. We truly are blessed…thank you so much to everyone for making beautiful memories for us that we might have roses in December.

Tuesday, August 06, 2002 at 03:02 PM (CDT)

08-06-02

Maddie and I traveled to Cleveland again this week to confirm GVHD suspicion. A biopsy was performed of the skin and on Wednesday we should hear something. It is much worse than it was, a bigger % of her body is covered with it, and the palms of her little hands are very bumpy and peeling. She has none on the bottoms of her feet. She is back on Diflucan and using a topic anti-rejection cream on all of her breakout. Despite all I do to put weight on her, it just isn’t happening. Any/all suggestions are welcome.

Despite all of that, we did go on a camping expedition Friday night in our new tent. (It is not EASY to put up Lisa!) We choose a camper friendly spot, complete with good food, TV, and great company…my brother’s back yard! Bev Martin, friend from RMH drove in for the very special event, and despite my snoring, and Maddie waking up to tinkle in the middle of the night, a good time was had by all! We took a spur of the moment trip to the most awesome amusement park anywhere, located on the shores of Lake Erie, and had another very memorable evening. Bev was brave enough to tackle the 92-mile an hour Millennium Force roller coaster with its 300 ft drop at night! It is such a fantastic ride, but not for timid folks with no sense of adventure, Paula!

God willing we will embark on another adventure on the 15th after our doctor’s appointment with the new spastic specialist. He will be talking to us about the benefits of Botox injects and or a surgically implanted Baclofen pump to see if we can get her back on her feet. We will then fly out to visit all of our friends in New England thanks to Anni and Amariah Condon. We are counting the days…

By the way – Winston IS A Chinese Fighting Fish! We bought a friend for him, and named him Willy, kept them in their own home near each other. But this morning,Willy, moved on to bluer waters, he will be missed.

Monday, July 29, 2002 at 02:44 PM (CDT)

7-29-02

I started this update last week, but it was difficult to compose, so I took the easy way out, and just didn’t do it. Wyatt was here all last week, so it was much more fun to be with he and the girls and forget all about Maddie’s illness. I wish it were that easy…

Maddie’s doctor’s appt on the last week showed good counts, WBC was 14.2, but as I suspected she has GVH of the skin. The palms of her hands are an itchy, blotchy mess, as well as her back and chest. She is quite miserable and the heat doesn’t help much. Her weight did not go up as I had hoped, despite her consumption of a dozen or more Krispy Krème glazed donuts. She still is less than 30 pounds, thanks to Adrienne for the 2T hand-me-downs that she now wears. The GVH and or Thrush in her mouth hurts when she eats fruit or acidy stuff, so weight gain probably won’t happen until we get over this. The good news is that she is still the spunky, (Katie Courick doesn’t hold a candle to her for usage of that adjective) determined, sweet voiced cherub who loves to show me her new trick…getting herself up to a kneeling position on all fours. We came up with a way to help her try to eat her favorite KK”s by breaking them in small pieces and she uses a toothpick to nail them and take them to her mouth. The tremors make that impossible some days, but she likes to give it her best shot…Alvin appreciates that! They will do a biopsy the week of 8-5 to check donor status.

Mikaylah is being tested by the International Adoption Clinic in Cleveland for a mired of things as recommended by her teachers last year. While I hope and believe it is a result of the turmoil in her young life these last three years, I need to be able to justify that before school starts in the fall. The divorce, relocation, lack of diversity in the schools and town, my job and travel, Maddie’s illness and our time away, and the disproportionate amount of time I now must spend with Maddie, has to be a factor. I know it has affected me in ways that I struggle to understand, I am sure it negatively impacts her too!

We just added a beautiful, new member to our family. His name is Winston (a W name because he is a boy like Wyatt), he is vibrant, low maintenance, and provides a different form of entertainment even though he doesn’t do much in my mind. Can you guess what he is? (HINT – He is of Chinese descent)

Monday, July 08, 2002 at 11:50 AM (CDT)

Monday 7-8-02

Ok, I know I promised I would be better at updating this, but I swear I do not know where the time goes. I am in the processing of delayering, or unloading stuff that I finally realized we don’t need to hold on to any longer. I had one garage sale already and am getting ready for a second one in August. It is strange, how quickly your needs and priorities change!
We went to Cleveland for our monthly check-up on the 24th. She had been up in the middle of the night with a fever, but had none when we arrived in Cleveland. She did have an elevated WBC, which is a clue to an infection that has the WBC building up for the fight. Weight stayed the same at 26 pounds. She slept all the way home; we arrived back here at 3:00 PM. She wasn’t herself, kind of laid around, not much energy, and at midnight before I hopped into bed she was running a fever of 101.7. I called MN BMT doc on call first, because they are always responsive and the most knowledgeable about the disease and us. That doc said our regular Ped. Doc should be able to do blood count and then start an IV so I wouldn’t have to run back to Cleveland unless it was a true emergency. He even offered to talk the Pediatrician through it, God only knows why a Pediatrician wouldn’t know already how to do an IV, but guess what?! My return call from our Primary Care Ped Guy, is a red flag to the state of our health care today. He said, “We do not have the expertise to handle your daughter’s care, go to Cleveland.” That not only infuriated me, because he is supposed to be a pediatric specialist, but it causes instant panic/anxiety knowing that Cleveland Hospital is 2 hours away, and he is 20 minutes away. We arrived in Cleveland by 3:00 am and were hospitalized for the next 2 days with what appears to have been a virus. Our Cleveland docs and MN docs were blown away by the lack of desire to do what they get paid to do exhibited by the Sandusky Peds organization. Good thing they don’t work in the business sector, people that say, “It ain’t my job” don’t get very far! While I don’t want someone to touch Maddie that doesn’t know what they are doing, he has been our doc since before the diagnosis; don’t you think he should have been studying up on it so he could be a partner with us and our other docs? Maybe Peds docs aren’t required to be live long learners like the rest of society. (I know all Peds docs aren’t like them, but the next group that was recommended to me gave me the same lame excuse. I always thought they had more training than a GP, if they don’t, then we are they foolish ones for paying them more for doing what our GP’s can do. How is a lay person supposed to know how to navigate the system?)
I encourage you all to understand your health care plans, and how your docs fit, or don’t before you have to depend on them and learn you can’t! It is truly frightening!!
Wyatt is coming home again on July 20th and the girls are counting down the days.
Maddie is getting stronger; I am slipping protein powder in everything I can to help build some muscle. She got up on her knees and crawled a bit last week. She needs to have her heel cords lengthened as she can no longer get her feet flat on the floor, that requires Botox injections, casting, and or surgery. WE have appointments to see a specialist for that and her eyes this month.

Thursday, June 13, 2002 at 03:47 PM (CDT)

Thursday 7-13-02

It has been a very busy week, well busier than usual for the Lang girls and Alvin! We went to our first drive-in movie, Mikaylah is out of school for the summer, Maddie got sick and ended up in the hospital for two days, and we saw a naked man on the turnpike in broad daylight!

First things first, we packed out cooler, popped our popcorn, and went to see Spiderman. We all had a good time, thank heavens they both fell asleep for the second feature, ENOUGH, staring J-LO, need I say more?! What kind of intellectual giant, pairs up a kid’s flick with a spouse abuse show? Jerry Springer?

Mikaylah is out of school for the summer and loving it. She supervised the daily activities of a mother Robin hatching her babies, and then feeding them. She made the new Mamma’s job easy by finding worms and making them visible for her, almost like a fast food restaurant. She was delighted to watch the whole thing until she realized that once they were big enough they would leave the nest never to frequent her restaurant again.

Maddie spiked a fever this week, added vomiting, a lack of desire for food and stopped breathing briefly which ended up in a two day hospital stay. She had a viral infection, and was dehydrated. She received IV fluids, and antibiotics and was right back to her feisty little self. The breathing difficulty was so scary and the tremors were much more pronounced which also was frightening. She seemed to get worse by the minute and help is two hours away which seems like an eternity when driving it. She dropped 2 pounds from her last weight 3 weeks ago, which added to my distress. Today she ate like a trooper and that cute little smile is back where it belongs. We go back to the doctor on the 24th for our monthly check up which includes a visit this time with the orthopedic doc. We also see the Neurologist the same week.

We have a garage sale planned for the weekend – lesson learned from RMH – if you didn’t use it, wear it, or need it while we were there, we surly don’t need it now! GONE!

Finally, the story you have all been waiting for – the naked man. On the way home from the hospital (Cleveland), I spotted a bare-chested man standing in the tall grass on a small hill on the side of the pike. As I got closer, I could see that he was smoking, he had a beer belly, and that he had forgotten to put his pants on! Naturally I was curious, so I slowed to a more normal speed to see the abnormal. He had no partner, so he wasn’t smoking after the “act”, but it was obvious that he was proud of the” stem upon his apple” to quote an old Irish Song. I guess he never heard the lyrics to the one that says,” it’s the only thing in life that can be small and not be cute.” I “barely” could give a good description to the 911 operator, “butt” I was sure the police would have no trouble spotting him!

Friday, May 31, 2002 at 01:50 PM (CDT)

Excellent news for us on Friday as Maddie’s counts were super!
WBC- 10.7
Hemoglobin - 9.8 (a little low)
Platelets- 239k
We have had such a wonderful last few days as her strength is finally coming back. It is invigorating to see her trying/and succeeding at many things she has not been able to do since in between transplants. She is learning to navigate the steps on her bottom as her tiny upper arms gain strength. She is still well under her normal weight (still under30 pounds), which is so hard to see as her Mom. But, that cute little voice, and perfect little smile help me concentrate on the positive instead of dwelling on the negative. She walks a few more steps each day with the assistance of the walker and one of her fans. She even ask to hold Alvin’s harness yesterday so she could walk into the grocery store. I have great difficulty getting her left foot massaged/stretched back into a 90-degree angle to fit in the brace, so we have an appt. with an orthopedic specialist in June to see if casts would help the stretch.

Memorial Day was very special to us as we drove towards Toledo, Ohio to meet up with Dan, Lisa and Ashley Richards whom we met at the RMH in Minnesota. We met half way for both of us and joined forces with their family to celebrate the holiday at a campsite. It has been years since we have done that, but as we roasted marshmallows over the campfire I couldn’t help being thankful for all of the new friends that we have met during this very difficult time! We relaxed, ate, shared Adult beverages, sunbathed, (so folks wouldn’t be blinded by my “lily white legs” Paula.) and even slept in our clothes (just like at the hospital). Food, good folks, and fun…can’t get any better than this!

Wednesday, May 22, 2002 at 03:25 PM (CDT)

Wednesday, May 22, 2002

Maddie had a great day today as she walked with her new walker unaided from the family room to my office! One of her braces is still very difficult for me to get on due to increased muscle tone, and then it hurts after it’s on for any length of time, but she did it anyway! Thanks a ton to the stretching and work done by Kira Day her PT specialist. I can see the strength coming back each day.
Yesterday she rolled herself from the daybed (bottom) to the floor and took her own pants off. When I got up to her room she was naked looking under the bed for something to wear! She still does not like taking the Neoral, (I tasted it and I don’t blame her), but we are finally on a taper to be done with it. It’s a good thing as I have about run out of tricks to get it in and keep it in.
Our too short, but sweet visit with Wyatt did wonders for her as well. She would sit on his lap and hug him for hours. He worked all night fixing everyone’s computers, and she would go crazy until he finally got up each day. He and his girlfriend went to Cedar Point with my nephews and she asked 100 times during his absence when he would be back home. Mikaylah has decided that she will never leave home when she gets as big as Wyatt! (Great!) They both woke up very early on Tuesday morning (4:00 am) and tearfully made him promise to come back this summer.
We have a Cleveland Doctor’s appointment on Friday so I will update the journal after I know the results of her blood work. I hope to hear that she is gaining some weight.
We lost another precious baby last week. Lily Byrne went to heaven to play with the rest of our dear little friends. Please pray for the family she leaves behind, her parents and 3 siblings!

Monday, May 13, 2002 at 05:35 PM (CDT)

May 13, 2002

We are back from our first vacation in ages, sunburned in Mom’s case, browned in Mikaylah’s case, and me, I am the same color I was before I left! I was not allowed to be in the sun, so Mom kept me covered in sun block #70 with an umbrella and a hat at all times. I even wore a fancy pair of sunglasses with my “vakini”just for a little sex appeal.
Mom thought it would be a week of rest and revitalization, but Victor Vacation Planner (alias Rob Prange) kept us very active and it was wonderful! We went to Sea World and petted the dolphins. We visited the Splendid China Theme park where we saw a lot of people that looked just like us doing acrobatics that were remarkable! We played in the waves one day, Mom and Rick really did, Mikaylah was afraid of the jellyfish and I was busy burying myself in the sand. We played miniature golf and Mom and I won! We had our very own swimming pool right outside our living room door and I was very independent in my special floating tube with a seat in it. Alvin loved the pool too! Mom, Ria and I canoed alongside Rob, Rick, and Mikaylah in a beautiful spring full of colorful fish and turtles. I was sworn to secrecy about my Mom’s poor canoeing skills, but Ria was there to protect me every time Mom steered us into or under a tree!
My appetite was incredible as I chowed down on Rob’s famous eggs each morning, and Mikaylah and Rick learned how good salami was for breakfast. I heard Mom and Ria laughing long after we were in bed as they drank something that started with the first letter of Wyatt’s name out of fancy glasses. We ate with the elephants in the Rainforest Café, and we met a man that looked and sang like one of Mom and grandma’s favorites – hint: he sang a song about Hound Dogs! Mom dared Rob to climb a real coconut tree to teach us what a coconut looked and tasted like, I never saw him do it, but one suddenly appeared and he taught us all about the milk and good meat inside!
I was flattered by all of the attention I received from all of the young gentlemen from Holland, (Rick, Mark and Martin) and felt stronger than I have for sometime! They fussed over me, and helped me be more active than I have been in a while! I can hardly wait until I am old enough to date!!
We received a call while we were away that my enzyme level is still good at 94.7 and I am still 100% engrafted as of our last visit to Minnesota in April. We have our next Cleveland doctor’s appointment on Monday, and we will be traveling back to Minnesota for our yearly check-up in October.
I continued my progress today with PT as I walked a few steps, and then once the therapist left I got myself down off the couch with my braces on! I am not certain, but I think my Mom was crying!
I am counting the days until Wyatt comes to see me on this Friday. He will put some new pictures on the web, I promise!
It was a fantastic Mother’s day for Mom as my uncle took us all to my other uncle’s restaurant in his camper for his famous ribs! Family and friends in the same week...can't get any better than this!!

Tuesday, April 30, 2002 at 01:01 PM (CDT)

Day 186

I am not ignoring you, I promise! It has been a tough transition back to what is supposed to be normal! On top of the mice invasion, I have changed jobs within GE. I now work for GE Capital Card Services. Trying to adjust to the new realities of life for us, which include, a new job, and the search for childcare has been trying to say the least! I think we may finally be seeing an end to some of the craziness, although those that know me best know that probably will never happen!
Maddie’s counts were good last week when we made the trip to Dr. Neider’s office in Cleveland. Her weight is still a concern as she turned 5 in March and is still less than 30 pounds. She is stretching out, which means that weight is distributed along a longer, leaner body which is hard for a Mom to see. She is eating bird like meals all day long which is a good thing, and the vomiting appears to be a thing of the past. I notice that her sweet angelic voice is getting stronger day by day. She can no longer feed herself due to the tremors, but she continues to try. She is very frustrated by the inability to help herself. Kira (PT) and I noticed today as we watched her build her MADIGINN with her blocks, that the higher she went with the tower the steadier she became. That is the reverse of how things used to be.
The Neuropsychiatry report came back from MN. This week and was disappointing. Basically, they feel she demonstrates a decline in visual spatial processing and visuoperceptual abilities. In a nutshell, they believe she is having difficulty processing visual information and that it is affecting her visual memory. Her problem extends to not being able to integrate separate items into a meaningful whole. They also see a decline in her fine motor speed and coordination. I pulled her from one test and did not go back the next day when I was asked her she knew her phone number and address. I can’t quote my exact response, but it is totally unrealistic for a child that has had back to back Bone Marrow transplants, and been hospitalized for months to even give a damn about where she lived. If they had asked HER, I bet she would have said RMH, and I wonder which phone number would have been appropriate, home, RMH, (and there are several possibilities there) or the hospital. If they had asked her what drugs she was on, how to flush a Hickman catheter, or the words to most any Raffi song, she would have passed for much older. She knew all of that before she went to MN. I am truly not trying to be difficult, but I’ve spent more time alone with her this last year than I had the pleasure of doing with my other two, and I just don’t see that much of a decline intellectually.
The exciting news is we are off on Saturday for our first vacation since this all started. It is finally time to kick back, enjoy the sun and fun in Florida with our good friends Rob, Ria and Rick from Holland!
God Bless and keep our two good friends who went to heaven this last week, our sweet friend Carley who is the 2-year old with glasses on the grass with several other babies in photo album, and Kacie who fought the valient fight against Fanconi Anemia. Please keep their families in your thoughts and prayers.

Monday, April 15, 2002 at 10:19 PM (CDT)

We were back in Minnesota at the Ronald McDonald House for our six-month
check-up. We were fortunate enough to be flown here this time in a private
plane by a wonderful organization called Air Life Line. The first pilot had
also adopted a daughter from China who is Maddie's age, (everything happens
for a reason) and his group was featured in the book "When you were born in
China!" The second pilot was a delightful grandmother of 11, small in
stature, but full of energy. It was a blessing for us to have had the
opportunity to ride with them.

Maddie's counts were good! In fact, Dr. Peters said," She was doing as well
as expected," I said, but Charlie what you mean is, she is doing much better
than expected, and is actually a fine example of what positive energy can do!
He conceded! They removed her Hickman, which was very exciting for her to
finally be line free after 10 months, but even more so for me, as I no longer
have to change the dressing and flush it daily (Yea, more sleep for me!) We
are waiting for the results of the MRI, and should hear from that doc this
week. She is working at standing, but still complains of leg pain. Physical
therapy is now coming to the house, and is one of her buddies, so we hope
that will make a difference. John and Dyana Karel bought her this marvelous
new walker that is less intimidating, and better suited to her condition, and
we have realistic hopes that she will soon be all over the place with that.
Despite the fact that she doesn't't walk, she scoots on her bottom each
morning to Alvin's cage to wake him up!

We participated in the grand opening of the RMH new 6 million dollar addition
this week. It was fantastic! Tours of the new rooms, a visit by the main
man, Ronald McDonald, music, great food, an authentic Indian Pow-Wow, and
blessings by several of the religious leaders in the community. The evening
ceremony was emceed by a TV personality, and I was asked to speak about what
RMH has meant to me to major contributors and volunteers. The Star Tribune
of Minneapolis did a story on Air Life Line and Maddie and accompanied us to
one of our doctor's visits. I was also interviewed for a TV spot with
channel 5 and the dynamic duo that did the first TV spot with Maddie
interviewed her for a follow-up. It was a busy week, but our new friends
from RMH once again surrounded us, and that was heavenly. We also stopped by
to visit nurses who truly exemplify the new Johnson and Johnson commercial -
Dare to Care - Be a Nurse!
It does indeed warm the soul to be loved and cared about by so many...thank
you for caring! ( we will have photos of the events in the near future, plus
some great shots of Maddie with hair again!)

Friday, March 29, 2002 at 09:44 AM (CST)

March 29, 2002

It has been a busy and eventful week. We went to clinic for our weekly blood draw on Monday, and results were good. WBC – 5.0, Hemoglobin, 10.5, and platelet count was 173K. She is eating more daily so we are hopeful that they NJ tube is a thing of the past. We left clinic before CSA rates were available, but will call Monday to see what they were. We are happy with the last results that were 203, and believe the tube was the problem, absorbing it in the past which resulted in lower levels for her
.
We are currently in Xenia, Ohio doing a Train the Trainer of sorts with our new dog ALVIN. The girls are so excited about him! He is even more beautiful than we remembered, and just as laid back as he was in MN when we first met him. I am excited that we will finally have a man around the house that pays attention to the girls, listens and does what he is supposed to do, and doesn’t complain about anything!! Now, if he could do handy work, and get rid of the mice, life would be about perfect. He does attract attention wherever we go during training because of his beauty and obvious intelligence.

I have worked daily this week with the trainer to learn to give the commands that will help Maddie. We first worked in the trainer’s home, and then went out in public to test he and I in our reality. It was a learning experience for me as I juggled stroller, kids, purse and dog. Maybe I can teach him to carry my purse and not give me any money unless it is a necessary expenditure? Amazingly, he likes Wal-Mart and Target too! He was perfectly behaved when we went to our favorite fast food spots, and did equally as well in the grocery store and more upscale restaurant. He lays his big head on Maddie’s lap when she gets her meds, she still doesn’t like them, but it helps! Today we will work on him lifting her to a standing position from the floor. He will also turn on the lights, open doors, and drawers for her. Last night, Mikaylah and Maddie filled the bath tub to give him a drink of water because they thought the bowl I brought for his water dish was to small! We will bring him home on the weekend.

Monday, March 25, 2002 at 01:02 AM (CST)

Well, we finally had a Saturday night at home instead of driving all the way to Cleveland and sitting in the ER. Our counts are good, and I am eating and keeping it down! That means no more NJ tube, unless things start to go backwards! I still hate my meds, the CSA is the worst, and so I still gag and through that back at MOM sometimes. The good or bad news, depending on from whose perspective, without the NJ tube in I am holding the CSA level much better! It jumped to 203 last week! My IGG was above normal at 921 and my pre-albumin was 18.8 on 3-19. On 3-21 when we went back up to Cleveland to see the neurologist, my weight had gone up to 29 pounds!! (Mom worries about the accuracy of that as they weighed she and I together and then subtracted her, and on Thursday they have a cool chair scale, soo…) We are still trying to get OT and PT set up here, and Mom is pretty frustrated that that hasn’t happened yet! I did crawl on my elbows, army style, to the bathroom, and I slide down to the floor from my favorite chair, how much more physical does she want me to get?!
Because of the unwanted guests we still keep catching, Mikaylah and I sleep in with MOM. I wonder how long it will be before she realizes, we haven’t really seen any mice lately?!
Guess where we are going early in the morning? Cleveland first for clinic, and then off to Xenia, Ohio to pick up the new MAN of our house – ALVIN! Yep, it seems like forever but the time has finally come. We have to stay in a hotel for 7 days to train with him so MOM can become certified to give him his commands, and then we can bring him home! This will be just the best Easter present ever!
Jazzi – get your master well so you can come visit us when we get home!!
Mom and I then will be flying to MN again on 4-9 for my 6-month check-up. I hope they will take the Hickman out then! Mom is working on a speech for the ground opening of the new addition to the Ronald McDonald House.
We love and miss everyone we left there, and those that left before us too!

Sunday, March 17, 2002 at 11:10 PM (CST)

3-17-02
My apologies to our faithful friends who follow our site religiously! I fully intend to keep this site updated, but it has been a roller coaster ride ever since our return from Minnesota! I never would have guessed how difficult it would be away from the experts that know us and understand our disease, not to mention so many of you that can relate to what we live with every day.
We arrived home on a Wednesday as previously mentioned and on that Saturday we were back in the hospital, only this time in Cleveland. A blocked NJ tube, would not allow me to feed or medicate Maddie, so after driving to three hospitals to try to fix the problem, (it is a simple procedure,usually fixed in minutes in MN), we ended up being admitted to Cleveland Rainbow Babies Hospital to solve the problem. After a 6-hour wait in the emergency room, and a call to one of the expert docs in MN, they finally put us on their BMT ward where they started IV fluids, and IV meds to compensate. The CV radiologist did not deem it an emergency on Saturday or Sunday to check out the situation, so we had to wait until Monday when they finally had a gastrologist, under total sedation put a new J tube in. Now while I only have an armature medical degree, I told them what and how to fix it to no avail, I also told them that the tube put in on Monday was NOT the tube used in MN. So on Wednesday night we ran into the very same problem, I changed pumps, slowed the feds, cleaned the tube all to no avail once again. So Thursday she and I drove back to Cleveland where they finally for the first time checked the placement, cleaned it with a wire, and then admitted I must know what I was talking about because despite their efforts I could not get the meds or feeds into her. So, at my adamant urging they requested a new tube to be sent from MN on Friday. It was agreed that we would see if she would eat and take meds by mouth over the weekend, and decide on Monday 3-18 whether or not to replace tube.
Story doesn’t get any better, late on Saturday night; I learned she had been exposed to chickenpox. After a frantic call to MN, I was instructed to get her to the ER ASAP for an injection of VZIG to try to prevent her from catching CP, which could be deadly to her.
So, you guessed it, off again we went to Cleveland, an hour and a half away, in the middle of the night, (thank heavens, my brother and Deb were visiting and offered to drive us there). WE didn’t get home until 4:45 am. Now we wait and pray for the next 3-and a half weeks.
Maddie turned 5 on Saturday, what a way to celebrate your birthday, driving to Cleveland in the middle of the night. A Winnie the Pooh cake and a Barbie electric jeep were hits of the day, much more fun than the two injections she received later that night. Next year I promised we would celebrate at her favorite restaurant, but this year it just wasn’t the best thing to do.
The mice that came to visit our house while we were away believe I guess that they have squatter’s rights, because despite the efforts of family and friends the sneaky little critters are insistent upon staying! As I work to clean up after their party, I find more and more evidence that it was apparently a big event for many of their friends. I am hoping that things will slow down a bit so I can once and for all get the mess cleaned up and get them and the rest of the party goers out of my house once and for all.
Rob Prange, from Holland, (did you know they have mice there too?)flew into MN and drove the rest of our belongings to Ohio for us. He stayed for a couple days and as always is a big hit with the girls. A big thanks to Ria and Rick for sharing him with us! He is such a good cook!! Ria, Rick and Rob will be back in April for a couple days before driving to Florida for two weeks. We will join them in May for a week of desperately needed lounging, levity and rejuvenation!

Friday, March 08, 2002 at 12:57 AM (CST)

DAY 133
March 7, 2002

I am finally home snuggled in mommy’s waterbed, surrounded by many of my favorite things. We decided to keep a BIG secret when we learned that we finally could come back home…we didn’t want to jinx it, and we wanted to surprise everyone! We sure did the later!
We flew here Wednesday, after a bittersweet farewell to so many of our extended family and friends. We wished that everyone was leaving with us, and there was no longer a need for a RM house (sorry girls, Bryan and Larry, we could find you other jobs). Thank you all that aided our “getaway”. Our lives have been enriched by those who have shared it these last many months and once again I say” the RMH is filled with everyday heroes!’
In true Mom fashion, we hit the airport loaded with everything we would need until the rest of our belongings arrive by van or UPS. We had 6 carry on, and 6 suitcases filled with meds, medical equipment, clothes, toys, etc. The only thing Mom wished we had and didn’t was all of the excellent doctors, nurses, OT, and PT folks who did so much for us there.
We pulled into my aunt’s driveway and she came running out crying when she saw my MOM! Then Mom went to the funeral home where many of our family were for calling hours for mom’s uncle Don, and they were speechless, but not tearless! One of my uncles dropped by to see why the lights were on in our house and got a big surprise. My cousin called Uncle Jame and Aunt Deb’s house and told them to come quickly to our house because there was a flood in the basement, imagine their surprise!
The only folks not happy to see us were the family of mice that decided to make our home theirs in our absence. They were rude house visitors, leaving evidence of their existence everywhere. They were not even potty trained; they used every room in the house for a restroom. There was no food so they ate whatever else they pleased! (Where are Paula’s cats when we need then?) My uncle’s set traps everywhere, and even brought two cats for a slumber party and food fest in the basement. (Don’t worry Dr. Peters, they are only staying one night, and I am not allowed near them.)
The good news is that I had a good night last night, and have only thrown up three times. My aunts even got me to eat 11 bites of pizza, and part of a cookie. Martha got me to eat a little turkey and some milk. Mom even ate more than her usual Heath bar and Frosted Flakes. She was having caffeine withdrawal problems, because we had no Diet Pepsi in the house! I feel like a princess as I sit in my rocker with my feet up and so many people to read to me, feed me, and pamper me beyond my wildest imagination. It sure is good being home again!

Monday, March 04, 2002 at 02:00 AM (CST)

Dear Family and Friends,
I will soon be coming home to you, it sure seems like forever since I slept in my own bed and played with my very own toys. I am as anxious to see you as you are to see me, but I must tell you that I am very different from when I left you. I have been through months of painful procedures. I have been bedridden/hospitalized for months and not able to do the things I most enjoy. The doctors told Mom that it takes three days to recuperate from each day bedridden. I lost all of my hair, started to get it back, and lost it all again. I have taken more medications in the last 9 months than most people take in their lifetime. One of the drugs I take is making my hair grow back quickly, but it is not selective, so I have hair growing all over my body.
I am unable to walk at present, and find it very difficult to even stand up. I am very shaky, and the tremors make it difficult for me to feed myself or hold a beverage. I still do not have much of an appetite. My Mom feeds me 18 hours a day through my NJ tube in my nose. Mom gives me all 12 of my meds several times a day through that same tube, and even though I have gone through this for 10 months, it feels yucky and I hate it!
My muscles are very tight in my legs which makes it hard for me to bend them, and it hurts sometimes just to move.
When I finally get to come home I will have several discharge guidelines that I will need your help with.

1. If you have any flu, cold, illness symptoms of any kind, please DO NOT come to visit me. My immune system is still suppressed so those symptoms can be deadly for me.
2. Hug and love me, but you must always wash your hands before you do with antibacterial soap. We’ll hang a sign on the door to remind you, and Mom has a big supply of soap, so don’t worry. She has masks you can wear too. I will be wearing mine!!
3. I can NOT be around non-toilet trained kids who have recently received polio vaccine, or MMR vaccinations.
4. If you have been EXPOSED to or have chicken pox or shingles, I need to avoid you.
5. I must avoid: Birds
The Sun (no more tan lines for me!)
Crowds
Chopped wood
Yard or Farm Work
Potted Plants (good thing Mom can’t grow anything!)
Lake swimming
Construction site
Kisses on the mouth
We miss you all, and are so very anxious to be home again, but please help us follow the rules so I can stay healthy. I will be home, but I am not healed. I need your love and affection and hope you will continue to support me and celebrate each and every success with me.
We have clinic on Monday, pray for good news!

Monday, February 25, 2002 at 12:29 AM (CST)

2-24-02

Day 123

Mom called to get last Monday’s counts since she knew they were so good. White Blood Count 6.5, hemoglobin 11.8, Platelets 166K. Now if I could only stop “tossing my cookies” we would be golden! I ate a few bites over the weekend, people are teasing me with all kinds of good food, but nothing has persuaded me to eat more than a few bites. Water, milk, and a sneaky sip or two of Mom’s Diet Pepsi is the extent of my liquids other than my 18-hour tube feeds, 4 cans of special formula. I cough and gag many times day and night which keeps Mom half asleep all the time for fear that I will choke, but I don’t always throw up then. Mikaylah sleeps through it all! I am glad Mom doesn’t, because it scares me. We’ll see Dr. Peters again tomorrow; we will see what he says. He was going to contact our doctor in Cleveland last week, and also see whom he would suggest to see on the vomiting thing there.
We just had a little accident, I slept through it, but Mom caught it when she gave me my last kiss good night. The tube feeding tube connection came unhooked from the pump, the pump kept pumping milk into my nice clean bed sheets! The good news is that Mom has the bed triple padded for protection, the bad news is, and it got the pillow too! We already have one pillow washed and drying in the tub…we need water proof pillowcases me thinks!
I got some cool gifts at therapy last week. Rebecca and Todd made me weights for my wrists from a sock, and rice. They help slow down the tremors so I can do things easier. A new friend at the Ronald McDonald House sewed beautiful snowflakes on them for me. Mitch’s Mom form Mansfield Ohio gave us the beads. When we get home Mom will make some more, but will use fish sinkers. They also gave me a weighted spoon to help me. Mom is going to order me a whole set of weighted silverware.
We put the finishing touches on the awesome poster, which has been a labor of love for months now. It is as long as the hallway in the RMH, and it has pictures, drawings, pieces of medical stuff, loving comments from friends, and much more. Pastor Doug hung it Saturday in the fellowship hall at the First Methodist Church for all of my friends and family to see. I also sent a video that was made this summer of my friends and I sharing our lives at the RMH. If you have a chance, and live close enough, stop in and see it. You will get to see so many of my new extended family members.
Did I tell you that of the 33 families now staying at the RMH, we have been here the longest? While that certainly isn’t a record worth jumping for joy about, we sure realize how lucky we are to have such a wonderful place to stay!

Wednesday February 20, 2002 11:54 PM CST

2-20-02

We went to clinic on Monday to see Dr. Peters and guess what kind of tie he had on? Veggie Tales, Bob the Tomato was on his tie and he was surprised when I knew exactly who that was. Can you believe he never saw one of their videos? He always wears special ties for us kids.
My counts were very good, but weren’t ready when we left the clinic, so the nurse called us afterwards to give them to MOM, she wrote them down, but my girl gang kind of used them for scrap paper tonight when we were making a get well poster for Jake. Do you think my Mom was mad??
My appetite is coming back a little bit. I ask for McDonald’s fries, so Mom walked to get them for me since it was way to cold for me, and then I changed my mind and decided I didn’t want them. Poor Mom had to eat mine, I wonder why she wasn't mad at me about that? I did eat the dill pickles off of the cheeseburger she bought me. I am hungry for sweet pickles and we just haven't had time to go get any. Wonder why McDonald's doesn't use sweet pickles?
I worked hard at PT and OT today and was so exhausted that I fell asleep before Mom and Ria’s favorite game – BINGO…(That's a joke, Mom and Ria hate it, and usually talk when we are trying to concentrate) Mom won three times tonight, I don’t know why she doesn’t like to play. Wyatt says there is not enough action for her. Rebecca, one of my OT friends gave me weights for my wrists to help eliminate my tremors. She and my buddy Todd, who made my braced and fixes my shoes so I can wear them with the braces, are going to work on some other new fangled weights for me. I can’t wait to see that.
The increased tube feedings (18 hours) and new meds are helping little with the vomiting. It seems to be slightly less frequent. Mom says I can’t say that again, I just threw up.
We see Dr. Peters again on Monday.

Sunday February 17, 2002 0:30 AM CST

2-16-02
Day 115
Counts: WBC – 4.6
Hemoglobin – 11.5
Platelets – 119K

We met with a Pediatric Gastrologist on Thursday to go over test results to try to figure out the vomiting dilemma. She believes that it is a result of the back-to-back transplants, and that it will stabilize once inflammation of stomach goes away. She said it is not uncommon for transplant patients to experience this side effect for months after transplant. The fact that Maddie had two transplants doesn’t help. She added two new drugs, and suggested increasing tube feedings to 18 hours a day. She also says to keep coaxing her to eat and drink anything!
The good news is that Friday and today we had“hurl” free days!! She ate bites of pot roast at noon today, and ate bites of chicken, fruit salad and noodles at dinnertime. She played house with the girls in the playroom, and ate Valentine’s Day candy at their tea party! Maybe, just maybe…
We have not formally talked to Dr. Charnus about the MRI, but we caught him on the way to a lecture and ask him about it. He has seen it, and says to call him on Monday and he will show me May and this MRI side by side. He acted like if there was a change it was minimal, but didn’t want to say for sure since he has several x-rays he is watching very closely.
We had a wonderful Chinese New Year celebration at RMH. With the help of our friends, Pam, and Lisa it will go down in our memories as one of the best ever. I bought Chinese goodies at the local Asian store, and we packed red envelopes and Chinese candy bags for all of our little friends here. We shared a delicious Chinese lunch and snacks with our friends and brought a little Chinese culture to many here who had no idea what the celebration was.
Valentines Day was equally as eventful! A volunteer meal group prepared a delicious meal for everyone and decorated the dining room with heart shaped helium balloons. The tables were festively decorated with candy filled centerpieces and each person received their own box of treats for dessert. Greg Manis had delivered Valentine goodies when he was here on the 4th, so we opened those together after dinner. WE addressed our own Valentines the night before and had fun delivering them at the hospital and under the doors at the RMH. We laid in bed giggling as we heard/watched little envelopes being slipped under our door too!
I flew to Connecticut on Friday to interview for a new GE job that would decrease my travel away from home. It will mean a move for us somewhere. One of our favorite nurses stayed with the Maddie, and Jenny, Lisa’s mom form Ohio, watched Mikaylah so I could fly out and back the same day.
Thank you to Wendy Bradley’s Sunday school class for the awesome cards! They are beautiful and are hanging up in our room. Future artists looks like to me!! Maddie would love to meet you all when she gets well!

Sunday February 17, 2002 0:30 AM CST

Thursday February 7, 2002 11:38 PM CST

Day 105

Counts : WBC - 4.7
Hemoglobin - 9.0
Platelets - 137K AWESOME!
Well, our 100 day appointment came and went without much fanfare unfortunately. We celebrated, as we value every day more than the last, but we did not see Dr. Peters as scheduled. We were in clinic by 8:00 am, got platelets, had alot of blood drawn for 100 day tests, but were then hurried along to the OR for sedation. It seems Dr. Peters was still in service on the BMT ward and no one thought to inform us that he wouldn't be down to talk to us about a discharge plan. You all know me well enough to know that I voiced my displesure with that communication screw up!
To make matters worse that day, after all the procedures, they had to replace her NJ tube that came out during the tests. She didn't make it to the recovery room until 4:30 pm, and then we couldn't leave unitl she was fully awake with good stats. At 6:00, when we were packed and ready to go, there was a code red, fire alarm, and we couldn't leave the hospital until firemen gave the all clear...7:15!
The good news is that we do not have CMV, or graft versus host disease. The bad news is we are still vomiting! She does have gastritus and an inflamed stomach (internally). We will see the specialist that did the tests tomorrow. We have no results for the MRI yet. We also have no word on a release date.
FOr those of you that saw her before we came here, it will be difficult to witness the change since we have been gone. She is as beautiful as the day I first fell in love with her, and the voice we all adore will still melt your heart! Her tremors have increased, and she gets so frustrated when as she struggles to do the things she used to do, like just hold a cup. She is still not back on her feet consistently, because of pain in her legs when she puts weight on them. Her feet also swell and I think that makes the braces hurt. We work hard with OT and PT to see if we can get any of that back, those are just some of the questions I have for the doctors. We have work to do, but she is a tough cookie, and on most days she cleverly figures out a way to overcome the obstacles.

Monday February 4, 2002 10:56 PM CST

Day 100

Counts: WBC – 4.7
Hemoglobin – 9.3
Platelets – 79K
ANC – 2.4

Yes, we did have clinic today and yesterday in fact, and tomorrow, Monday. The vomiting has not ceased, and it has Mom and I about crazy. I ate some ramen noodles, and a bite or two of chips and salsa, and lost that. Mom even found a Wendy’s here on Saturday hoping to whet my appetite, it did, but I lost the fries on the way home…sorry about the van Rob and Ria, Mom cleaned it up good! I throw up even when I don’t eat, so go figure!
Tomorrow will be a big day. We have an early clinic appointment with Dr. Peters to talk about when he thinks we might be able to come home. We have a chest x-ray, and then I go to anesthesia for a little nap for the third and final try to do an MRI. They will also do an endoscopie (I think that is a camera they put down my throat into my stomach to check for graft vs. host or something else that would cause this awful retching) while I snooze, I sure am glad I get to sleep through that procedure.
As you might imagine, the anticipation for tomorrow is unbelievable because of all we have seen and endured here. We are regretfully not as naïve as we were when we first came here. In many ways that is a bad thing. We now know how quickly decisions can change and how dramatically they affect us all. We have lived with and loved so many that didn’t get to go home, so we will wait…
Keep us in your thoughts and prayers.

Monday February 4, 2002 0:07 AM CST

Day 100

Counts: WBC – 4.7
Hemoglobin – 9.3
Platelets – 79K
ANC – 2.4

Yes, we did have clinic today and yesterday in fact, and tomorrow, Monday. The vomiting has not ceased, and it has Mom and I about crazy. I ate some ramen noodles, and a bite or two of chips and salsa, and then lost that. Mom even found a Wendy’s here on Saturday hoping to whet my appetite, it did, but I lost the fries on the way home…sorry about the van Rob and Ria, Mom cleaned it up good! I throw up even when I don’t eat, so go figure! I just can't seem to win.
Tomorrow will be a big day. We have an early clinic appointment with Dr. Peters to talk about when he thinks we might be able to come home. We have a chest x-ray, and then I go to anesthesia for a little nap for the third and final try to do an MRI. They will also do an endoscopie (I think that is a camera they put down my throat into my stomach to check for graft vs. host or something else that would cause this awful retching) while I snooze, I sure am glad I get to sleep through that procedure.
As you might imagine, the anticipation for tomorrow is unbelievable because of all we have seen and endured here. We are regretfully not as naïve as we were when we first came here. In many ways that is a bad thing. We now know how quickly decisions can change and how dramatically they affect us all. We have lived with and loved so many that didn’t get to go home, so we will wait…
Keep us in your thoughts and prayers.

Thursday January 31, 2002 3:18 PM CST

Day 96

Counts: 10.3 WBC
9.1 Hemoglobin
76K platelets

My counts are looking good! If I could only stop throwing up! I had two appointments for an MRI; the nurse both times used all sedation drugs they were permitted to administer to no avail! Mom said it was my strong, independent personality (you all know where I get that) trying to take control what little there is I can control here. The second time, I feel asleep immediately upon entering the recovery room and slept for hours!
My CSA (anti-rejection drug) level is low, so they have changed the doses of that a couple times. They measure that every Monday. They found that I also have one CMV cell, in 50K, which can be dangerous for me if it increases. When that happened before, the drug they put me on helped to cause my counts to take a dive, so Mom does not want me on that again. Today I spent most of the morning in the hospital doing a reflexology study to try to nail down the cause of the vomiting. I think it was a study to see if I was dumping the food from my stomach correctly. The result was good news; my Mom understood that, but needs to clarify it before sharing it with you and me.
Now they want to do a biopsy of my gut to see if the vomiting is from graft versus host disease. They have to do that in the hospital as an outpatient under doctor administered sedation. Mom ask them to do the MRI at the same time, she is so darn smart!! They are trying to schedule that for me ASAP.
We have clinic tomorrow and hope to know more then.

Thursday January 31, 2002 0:09 AM CST

Day 96

Counts: 10.3 WBC
9.1 Hemoglobin
76K platelets

My counts are looking good! If I could only stop throwing up! I had two appointments for an MRI; the nurse both times used all sedation drugs they were permitted to administer to no avail! They could not get me to sleep enough to get me in that tube like machine! I would have considered it if it had been a GE MRI machine, but it was a Siemans. Mom said it was my strong, independent personality (you all know where I get that) trying to take control of what little there is I can control here. The second time, I feel asleep immediately upon entering the recovery room and slept for hours!
My CSA (anti-rejection drug) level is low, so they have changed the doses of that a couple times. They measure that every Monday. They found that I also have one CMV cell, in 50K, which can be dangerous for me if it increases. When that happened before, the drug they put me on helped to cause my counts to take a dive, so Mom does not want me on that again. Today I spent most of the morning in the hospital doing a reflexology study to try to nail down the cause of the vomiting. I think it was a study to see if I was dumping the food from my stomach correctly. The result was good news; my Mom understood that, but needs to clarify it before sharing it with you and me.
Now they want to do a biopsy of my gut to see if the vomiting is from graft versus host disease. They have to do that in the hospital as an outpatient under doctor administered sedation. Mom ask them to do the MRI at the same time, she is so darn smart!! They are trying to schedule that for me ASAP.
We have clinic tomorrow and hope to know more then.

Tuesday January 29, 2002 2:43 AM CST

Day 95

Counts: WBC – 10.3
Hemoglobin – 9.1
Platelets – 76K

Two-year-old Alexis Wiggins lost her valiant fight against the rare disease, Hurlers, early Thursday evening. Her Mom, Jodi, and I lived at the Ronald McDonald House with our beautiful daughters hoping to beat the deadly disease that threatens their existence. We shared our hopes, our dreams, our tears and our pain these last several months, as we loved them through every painful, scary, procedure. Those days are over for Alexis, she has gone to be with her friends already in heaven, Robin, Cole, Wade, Bryanna, Trevor, to mention a few, to watch over the rest of their little friends here and pray for their safe keeping. She too, will be sadly missed!
Maddie’s counts are looking better! She is finally off of the round the clock antibiotics that I infuse through her Hickman, and I can’t tell you how happy I am about that. She still isn’t excited about food, but ate tacos and chips tonight better than anything else to date. The vomiting is still a problem, and she will go through a test on Wednesday as they try to get to the bottom of things. She tried a new drug to coat the stomach on Friday, but it never made it to the stomach. It upset her system so badly, that she threw up from 7:00pm until at 1:30am, long after she fell asleep. So much for that drug!
Friday was supposed to be her follow up MRI, but they could not get her sedated enough to do it. They gave her enough versad, and fentenal, plus soft music and ambient lighting to do the trick, but her little system wasn’t buying any of it. They had me with the music… We try again tomorrow.
She meet with one of her favorite doctors and mine today, Dr. Charnus, neurologist, for his follow up consult, and he was impressed. Despite the fact that she is nowhere near where she was when we got here, mobility wise, and that she cannot yet walk alone, he sees progress. He said that it takes three days for every one day bedridden to recover normal physical activity. We were in the hospital almost 3 months this time! He sees hand muscle coordination coming back and was impressed with how loose her leg muscles were! We will know more after the MRI; it is only of the brain.
Her laughter could be heard throughout the kitchen tonight as she and Janet, house management staff, played with a new toy she found. She found a way to color the gigantic birthday banner tonight by lying sideways and resting her weight on the side of her body, because her elbows wouldn’t hold her. She is determined! She even baked cookies with Michaela tonight. It is a true Kodak moment to watch her giggle with Mikaylah as Mikaylah reads to her. Her deep belly laugh is infectious and Mikaylah eggs her on with her own interpretation of stories she can’t yet read! (Can’t get any better than this!)

Tuesday January 22, 2002 11:12 PM CST

Tuesday, January 22, 2002

Day 89

Counts: WBC 3.8
Hemoglobin 8.8
Platelets 56K (we got some Saturday)

WBC is jumping all over the place. On Saturday it was 7.1, but Dr. Davies said today that is to be expected. Her electrolytes all looked good, and her weight has started to climb in the last couple weeks. She has weighed in at 12-13.4 kg as long as we have been here, but has inched up to 14.7kg now. We just have to watch and make sure she is not retaining fluid. We left clinic excited that we were at the end of our IV antibiotics (or sleep busters as we call them, as they have to be administered every 8 hours), we even celebrated with fries from McDonalds only to have our home health care drop by tonight at 7:30 pm with a special delivery of more IV antibiotics… a new order from clinic, which only can mean we have something that isn’t gone yet and was discovered in the labs after we left! Drat! The good news is we can continue sharing Frosted Flakes at 3:00am!
I still vividly remember the first week I was here. I was so naïve then, so untouched by so many of life’s brutal realties. My confidence was at an all time low, and my ability to handle anything seemed to have disappeared that first morning as I stood in the rain waiting for a shuttle that was an hour late. The words from a good physician friend echoed
In my ears ”Your life will never be the same again!” I scoffed at the thought, but I don’t mind admitting now that I was overwhelmed and scared as I guessed at what might lay ahead for my beloved Maddie and our perfect little family. As I stood there in the rain with only garbage bags to keep Maddie and I dry, a beige van with Kansas license plates pulled up, and out jumped a woman with a southern accent, she scooped up Maddie, and led me to the seat beside her in the van. She talked a mile a minute as she drove us to clinic that day. I learned about her now 2-year old daughter, Alexis who suffered from Hurlers, and was riding quietly in the back seat. She showed me the fastest route to hospital and clinic and gave me direction to the closet Target store. We made a date for after clinic to teach me the ins and outs of the RMH and to answer all my questions about the Bone Marrow transplant experience since she had already been here for 5 months.
I have learned a lot since then, and try to do for others what she did for me that very first day. But what I have not yet learned is how to handle the pain, sorrow and death of beautiful innocent children which is our reality here. I have not learned how to help parents who have become family to me deal with the emotional ups and downs of our children’s illness. I don’t know how to help my friends here live with the news that the love of their life is losing ground and is in critical condition after years of fighting a devastating disease that has ravished their body. I wish I knew...
It’s been many months since that cold, rainy, May morning, but Jodi and Alexis are still here. Alexis is fighting a very serious fungus that now inhabits her entire body. It threatens her life! If only I knew, how to help her like she helped me so long ago... Please keep Jodi and Alexis in your thoughts and prayers.

Thursday January 17, 2002 1:40 AM CST

Day 83

1-16-02

Counts: WBC - 5.3
Hemoglobin – 9.1
Platelets – 62K

We went to clinic today with Steve and Jake. Jake is a seven-year-old little boy who has Aplastic Anemia. Steve is his older brother who lives here and takes care of him because their mother passed away, and their father has to maintain the farm and livestock to support them and the rest of the family. Steve played arena football with hopes of trying out for the pros until Jake was diagnosed. He is a true hero and role model as he cares for his little brother like a loving parent. He warmed the car up for us, dropped us off at clinic, worked out and then came back with a nice warm car to pick us up. The kids had fun today sharing a room for their doctor’s visit. The docs were confused when they found us in the same room together. I wonder if the visit was half price then…

Maddie’s creatinine is back to normal now, but her potassium is up a bit, so I changed the dosage I put in her nightly tube feeds to compensate. Her legs and feet are swollen which make the braces very uncomfortable. They don’t think she is making her own platelets yet, or not enough at any rate, so she is still getting GCSF to help encourage WBC and platelet growth. She is on CSA, the anti-rejection drug also, which makes her hair grow, all over her body, not just her cute little head. She is a little fur ball now, with hair head to toe. Her hair is coming in much darker than it was before transplant. Robin and Carley both had curly hair after transplant; I don’t think hers will be.

We go back to clinic on Saturday, and have special permission to attend a movie if we go to an early one and keep a mask on (that means no popcorn)! Snow Dogs is out in two days and they are counting the minutes!

Day 80 1-13-02

Counts: WBC - 7.3
Hemoglobin - 9.9
Platelets – 50K

Well, we are out of the hospital again and back the Ronald McDonald House. She is on 20 medicines and several of those I infuse into the Hickman in her chest. She has four medicines than come in a bomb/ball, which I hook, directly into her central line several times a day. It is basically a take home infusion pump system which I then flush with saline and heparin after each med. She tucks the medicine bomb (about as big as a hand grenade) in her shirt. It is a very intimidating thing at first when you learn how to do this because everything must be sterile, and each step must be followed accurately so as not to cause serious harm or infection to her. (I can tell you, we do not pay nurses nearly enough for what they know and do! As a society, maintenance folks make more to fix our material possessions than nurses do that we depend on to help fix us? Something is wrong with that picture!) We went to clinic today with one medicine bomb infusing one antibiotic, and her formula tube feeds running from an infusion pump inside a backpack I was wearing. If you had asked me a year ago if I could have done any of this I would have probably said no! We go to clinic again tomorrow so they can keep a close eye on her cretonne, which is still high, but coming down, and her platelets that have been going up and down daily. We do see our primary doctor tomorrow, Dr. Peters and have our questions ready for him regarding her progress to date and what his thought are about getting us home.
She is very tired and has trouble sitting up for any length of time. She enjoys bath time with Mikaylah, but she has a very difficult time balancing and sitting up right in the slippery tub. She is also very protective of her Hickman, as she is not allowed to get it wet, (germs can get in and cause serious line infection) and she hates to have me change the dressing which takes a good half hour, and isn’t a walk in the park for her. She loves the glittery gold fairy dusting powder we put on after the bath, which is the only thing I have found to entice her to get in the tub.
I can’t remember if I told you that she is quite sure the new doc at the hospital is Raffi. She and Mikaylah are so sure of it that she asked him to sing for her before she left. He is from England, and doesn’t have a clue who Raffi is, but once we showed him the resemblance, he played along and came in and sang to her. That is the kind of excellent people that help to make the last eight months worth it!!!

Thursday, January 10, 2002 at 12:46 AM (CST)

Wednesday 1-9-02

Day 76

Counts: WBC – 6.1
Hemoglobin – 7.2 (she got blood today)
ANC – 3.2
Platelets – 41K (she got platelets too!)
The great news is that only a week ago her WBC was only 1.0! The virus, the bottom infection and one of the drugs appear to be the culprit of the dropping counts. They discontinued and replaced that drug and positive things began happening. Her bottom is getting better; surgeons will look at it again tomorrow to be sure. Her appetite has started to come back, strange requests for ketchup straight out of the little bag, and washing it down with milk. She was speaking more today, laughing, and singing a bit with Raffi, all of which I haven’t seen/heard for some time. I was allowed to dress her in adult contact precaution attire, including gown, gloves and mask and let her ride a bike for awhile in the hall. When she tired, one of the care partners pulled her for a while in the wagon.

As I was typing those she woke up screaming in pain just like earlier in the week when she had a strong reaction to one of the antibiotics. It seems that in efforts to get us out of here, they gave her the drug tonight without the dose of ionized calcium, and once again she reacted adversely. The drug robs the system of calcium, which is very painful in her extremities. As they work to get us back to the Ronald McDonald House, they are trying to wean her off or combine drugs to make it possible for me to administer them by myself. Currently she is on so many, at so many different times, both through the NJ tube and infused through the Hickman, that it would be difficult to handle alone.

Mikaylah had another good day in school. She enjoys it and her teacher said she works very hard. She and I run from the hospital back to the Ronald McDonald House every morning for school. It is occasionally a logistical challenge as one never know what is going on with Maddie in the hospital room, or who might be in the room when it is time for us to head to school. At lunch she eats with her class in the dining room, but I have to have it ready or depend on some kind parent to help. I run back to get her at 3:00 p.m., unless someone from there is coming here for something. Last week one night, Steve, a 6’5” arena football player who is at RMH taking care of his sick little brother, walked her back. She stopped talking about how big he was long enough to ask him if he was a husband yet. I think she meant for her????

I built them a tent over Maddie’s hospital bed last night, complete with their glow in the dark sticks. They laughed and giggled for hours, and I couldn’t bring myself to silence them despite the hour, because it was music for the heart. Visitors came to look through the window once the word spread about the “cool” sleeping quarters it’s funny how bed sheets, safety pins, and thumbtacks with the medicine pump pole as the anchor can provide so much joy.

Tuesday, January 08, 2002 at 01:37 AM (CST)

Monday 1-7-02

The good news: Counts: WBC – 3.3
Hemoglobin – 8.9
ANC – 1.9
Platelets – 36K (Got some today, will see the results of that
Tomorrow.)

She willing let PT put her braces on, (no complaints of pain) and she went out in the hall with the walker to find stickers that Wendy had hidden in the hall. She was not as tight as she has been in previous days, but was still very weak. Her hands need exercise to regain the muscle tone she has lost from inactivity. She practiced some of those activities with Lisa from OT. She walked all around the nurse’s station, and then knocked on the door where the docs and rest of the team meet each morning to discuss patients before rounds. They opened the door in order to see her and everyone gave her a round of applause for her progress. This is the first time she has walked since October! She also ate McDonalds fries, which is the first food she has eaten in weeks!

The bad news: She was up most of the night vomiting, and has such a sore bottom from the constant diarrhea. To top it off, after the docs applauded her success, they told us to get back in our room because our recent stool test came back showing adenovirus AGAIN! That means that we are under contact precaution and anyone entering our room must wear gown, mask and gloves! She will once again be put on the experimental drug as she was twice previously when she had this. It is dangerous to vital organs, so they will med and premed her to protect them. It is usually a 3-4 week regiment of drugs to clear it. It could be the cause of the fevers or not. Her creatinine is high so she did not get a dose of GCSF (growth factor) today, and it may be the reason she did not receive the drug yet to treat the adenovirus.
Mikaylah went back to school today at the Ronald McDonald House. She had a hard time getting up, as sleep is difficult in the hospital room. She sleeps on an exercise mat, and I sleep on the futon. She is a sound sleeper once she gets there, so the interruptions I go through all night, she is oblivious to. Our friend Tony from the kitchen brings Maddie’s breakfast tray first so she can eat before I walk her to school. I have to fix her lunch when they break for it at noon, and pick her back up at three. I am lucky this week as one of the other mothers who is about ready to go home is helping me with the logistics of that.
I think I’ll write a book when this is all over and the first chapter will be “How to feed three on a hospital food tray!” The second chapter will be “Ten easy steps to understanding your hospital bill to eliminate overcharges!” The tips and tricks section of my book will detail my experience in wearing the same clothes day and night over and over and over and still not have that lived in look. I will also have make up and hair styling tips for those days when you hold your eyes open with toothpicks after a rough night. I think the highlight of the book will be the chapter on “how to appear and sound intelligent during doctor meetings when you look like you do, knowing they probably saw you sleeping with your mouth wide open, and heard you snoring!

Monday, January 07, 2002 at 11:33 PM (CST)

Monday 1-7-02

The good news: Counts: WBC – 3.3
Hemoglobin – 8.9
ANC – 1.9
Platelets – 36K (Got some today, will see the results of that
Tomorrow.)

She willing let PT put her braces on, (no complaints of pain and the first time since transplant) and she went out in the hall with the walker to find stickers that Wendy had hidden in the hall. She was not as tight as she has been in previous days, but was still very weak. Her hands need exercise to regain the muscle tone she has lost from inactivity. She practiced some of those activities with Lisa from OT. She walked all around the nurse’s station, and then knocked on the door where the docs and rest of the team meet each morning to discuss patients before rounds. They opened the door in order to see her and everyone gave her a round of applause for her progress. This is the first time she has walked since October! She also ate McDonalds fries, which is the first food she has eaten in weeks!

The bad news: She was up most of the night vomiting, and has such a sore bottom from the constant diarrhea on the cyst. To top it off, after the docs applauded her success, they told us to get back in our room because our recent stool test came back showing adenovirus AGAIN! That means that we are under contact precaution and anyone entering our room must wear gown, mask and gloves! She will once again be put on the experimental drug as she was twice previously when she had this. It is dangerous to vital organs,especially the kidneys, so they will med and premed her to protect them. It is usually a 3-4 week regiment of drugs to clear it. It could be the cause of the fevers or not. Her creatinine is high so she did not get a dose of GCSF (growth factor) today, and it may be the reason she did not receive the drug yet to treat the adenovirus.
Mikaylah went back to school today at the Ronald McDonald House. She had a hard time getting up, as sleep is difficult in the hospital room. She sleeps on an exercise mat, and I sleep on the futon. She is a sound sleeper once she gets there, so the interruptions I go through all night, she is oblivious to. Our friend Tony from the kitchen brings Maddie’s breakfast tray first so she can eat before I walk her to school. I have to fix her lunch when they break for it at noon, and pick her back up at three. I am lucky this week as one of the other mothers who is about ready to go home is helping me with the logistics of that.
I think I’ll write a book when this is all over and the first chapter will be “How to feed three on a hospital food tray!” The second chapter will be “Ten easy steps to understanding your hospital bill to eliminate overcharges!” The tips and tricks section of my book will detail my experience in wearing the same clothes day and night over and over and over and still not have that lived in look. I will also have make up and hair styling tips for those days when you hold your eyes open with toothpicks after a rough night. I think the highlight of the book will be the chapter on “how to appear and sound intelligent during doctor meetings when you look like you do, knowing they probably saw you sleeping with your mouth wide open, and heard you snoring!

Saturday, January 05, 2002 at 11:06 PM (CST)

Saturday
1-5-02

Counts: WBC – 1.6
Hemoglobin – 8.7
Platelets – 33K
ANC – 0.7

We are still in the hospital, but back on the Bone Marrow transplant floor with a new phone number – 612-273-0231. I have no idea how long we will be here as we are battling low counts and an infection on her bottom that is really painful for her. They are currently treating that with several infused antibiotics, but may have to surgically remove the growth there if it does not drain utilizing the current treatments. She is also receiving GCSF a drug to help increase her white counts. She has been taken off two other drugs that adversely affect her counts.

So many docs saw her today I thought we were on ER. Neurology has asked for another MRI to see if they can see any further damage done to either the peripheral or central nervous system. She is very weak and not walking yet, and it has not yet been determined if that is a result of drugs, length of time bedridden, or disease. I wish we knew the answer to that! She is vomiting and has diarrhea, which wouldn’t make me, want to do much but lay around either.

The great news is that the enzyme test results show that the enzyme that was missing from her body, is now there, a gift from our unselfish donor. It will take several months for the enzyme to do its job and become a real “player” in her body, in the mean time we have to continue to pray that disease progression doesn’t do any more damage before enzyme can do it’s magic. We must also pray for better counts so we can get healthy and stay that way so we can finally come home!

Tuesday, January 01, 2002 at 11:35 PM (CST)

Tuesday, January 01, 2002

Counts: WBC – 1.2
Hemoglobin – 10.2
Platelets – 85 (she got platelets again today)

Happy New Year! We donned our party hats (Mikaylah didn’t tell Maddie they said Happy Birthday), loosened up our lips for our party noisemakers, and gobbled down shrimp and crackers supplied by Pam and Clark for our New Year’s Eve party. Just before midnight, Lisa from Philadelphia surprised us with Chinese food and more snacks, who ever said hospitals were no fun???

Maddie spent most of yesterday in pre-op and surgery to remove and replace her Hickman catheter. She was very sore and tired when we finally arrived back in our room around 6:00PM. She was not the party animal that Mikaylah was, but an occasional smile made it all worthwhile. We shared our glow in the dark necklaces with other kids on the floor, IF they could stay up past midnight. They are always a big hit. A good time was had by all!

Haven’t been able to get rid of those dreaded fevers all day today. They changed some meds again, and added a dose of GCSF to kick-start her marrow and raise that WBC. Her throat was sore from intubation during surgery yesterday, so she was quiet and sleepy most of the day. She only takes bites of requested foods so the tube feeds continue to keep her nutritional sound. They did blood cultures, urine cultures, throat, and nasal and stool cultures to find the source of the fevers. It is no wonder she wants to go home! Tomorrow they will do another donor status test, which takes a while to be evaluated, to make sure we are still 100% engrafted. They did an enzyme level test two weeks ago to see if the donor’s enzyme we lacked is alive and well in her body, we don’t have those results yet.
Hopefully tomorrow will be a better day for her. Mikaylah and I made her New Year’s resolution for her – She will quit being sick in 2002!!!
Good health, prosperity, and happiness to you and yours in 2002!

Sunday, December 30, 2001 at 11:10 PM (CST)

Sunday, December 30, 2001

Counts: WBC 1.4
Hemoglobin 9.5
Platelet 23K (low – she got platelets today)
Glucose 130 (high)

We are still in the hospital. She spiked a fever in the middle of the night after her antibiotic was infused. She then had an allergic reaction to the drug in the form of chills, grinding teeth, tremors, vomiting and pain in her legs. They gave her something to ease the reaction, but it still was scary and lasted 25 to 30 minutes. Doctors believe the fever was from the reaction, but kept us in here anyway. We were up and down most of the night, well at least Maddie and I were, Mikaylah slept through it all. I must have looked like a fright this morning, because both doctors suggested they find someone to watch Maddie so I could go back to RMH and sleep for a couple hours! They found someone for me, Mikaylah went to a movie with friends, and I was able to catch up on the laundry and gather supplies to bring back here. I can’t sleep during the day, and had to be back to administer Maddie’s meds. I do all of her meds and her tube feedings at the hospital because I am very nervous since we are not in the intensive care, BMT floor where all of the nurses are experts at caring for us. The discharge meds cost over $3000.00 and would be outdated if I didn’t use them as well, not to mention the additional cost of the same drugs if I let the hospital pharmacy send them up each day. (I have learned enough about health care and insurance companies that I should teach a class when I finally get home. You really have to scrutinize all expenses daily, ask questions, and be an advocate for your child.)

She ate a little bit today, but not enough to eliminate tube feedings, much to her dismay. She did stand for the first time yesterday with her braces on. Our neurologist was so excited that he came back for a second visit and ask her to walk for him. He turned his back, and she took two steps while holding on and pinched his backside (she knows a good thing when she sees one!). She is a favorite amongst her PT folks so they do their utmost to see her daily while she is in.

The surgery to replace her Hickman will take place tomorrow at approximately 1:00 pm. It is usually a 2-3 hour ordeal. They believe it is too short currently and may be up against something that inhibits the blood draw. They will test the line itself for infection.

Saturday, December 29, 2001 at 12:33 AM (CST)

Friday, December 28, 2001
Day 64
Counts: WBC – 1.5
Hemoglobin – 7.7
Platelets - 41K
Our counts have steadily been going down. She received red blood cells today as a result of the low hemoglobin numbers. I have been concerned as this is an all time low for us, but the docs say this can be a result of whatever is happening to cause the fevers and the antibiotics they are giving her to combat that. The Hickman is also clogged again, and after a CT scan yesterday they have decided to do the surgical procedure on Monday to remove and replace it. The news of that was not met with cheers from either of us. They are unable to draw blood from one of the ports and believe that maybe a line infection is the culprit. Scar tissue has also attached to the port inside her chest clogging the port. (I met with the doctor later tonight to discuss my concerns about the dropping counts and found out that the team is also looking at that. They will probably re-start GCSF, a drug to boost the WBC. They changed one of the antibiotics again and she had a reaction that they are treating with Benadryl. She is not eating much, she has requests for tacos and guacamole, but she eats very little of it.
We got out of the hospital on Friday, only to land right back in here on Sunday afternoon after our clinic appointment where she had the dreaded fever again. I begged the nurse not to call the doc with the results as it was only 100.6, but to a BMT patient all fevers are a cause to investigate further. So back we came, while our friends who had traveled all the way from Holland to spend Christmas with us settled into life at the RMH house without us. It was disappointing to say the least after being here so long and looking forward to some fun for a change to have to be confined again. But our friends at the Ronald McDonald House came through again to lift the mood and make the best of the situation.
We got an “escape pass” on Christmas Eve so we could enjoy the puppet show, gift sharing, carol singing, and delightful food provided by a family at the RMH. A good time was had as we congregated with our close friends to enjoy personally chosen gifts commemorating our time spent together these last several months. Levity was in abundance as we put the sickness and tragedies out of our minds for a few hours and enjoyed the precious friendship of those who have become our new family.
Santa made a brief stop by our room in the middle of the night to eat the cookies and milk we had left for him and to leave a preview of presents representing our Christmas to be had later in the day. My GE friends, Cathy and Tina, helped to make the season bright for many of our young friends at RMH, by sending age appropriate gifts especially for them. We had fun delivering their presents by wheel chair to each all of the lucky kids. It was hard to say who had more fun!
We also got to sneak home to see what Santa had left us at Ronald’s house, and “what to our wondering eyes should appear, but a bed full of presents for my little dears”!
Thank you family and friends for helping make this Christmas one to cherish. It really IS a season for giving. We have been given so much by so many, we truly appreciate the most precious gifts of all, love and friendship! Happy Holidays to you and yours!

Saturday, December 29, 2001 at 12:18 AM (CST)

Friday, December 28, 2001
Day 64
Counts: WBC – 1.5
Hemoglobin – 7.7
Platelets - 41K
Our counts have steadily been going down. She received red blood cells today as a result of the low hemoglobin numbers. I have been concerned as this is an all time low for us, but the docs say this can be a result of whatever is happening to cause the fevers and the antibiotics they are giving her to combat that. The Hickman is also clogged again, and after a CT scan yesterday they have decided to do the surgical procedure on Monday to remove and replace it. The news of that was not met with cheers from either of us. They are unable to draw blood from one of the ports and believe that maybe a line infection is the culprit. Scar tissue has also attached to the port inside her chest clogging the port. I met with the doctor late tonight to discuss my fears(after I first typed the message above)and he is also concerned. They may restart GCSF, a drug to fire up the white blood count. They will talk about it in the a.m. with the rest of the BMT team. She had a reaction to something tonight and they had to give her Benadryl to fight that.
We got out of the hospital on Friday, only to land right back in here on Sunday afternoon after our clinic appointment where she had the dreaded fever again. I begged the nurse not to call the doc with the results as it was only 100.6, but to a BMT patient all fevers are a cause to investigate further. So back we came, while our friends who had traveled all the way from Holland to spend Christmas with us settled into life at the RMH house without us. It was disappointing to say the least after being here so long and looking forward to some fun for a change to have to be confined again. But our friends at the Ronald McDonald House came through again to lift the mood and make the best of the situation.
We got an “escape pass” on Christmas Eve so we could enjoy the puppet show, gift sharing, carol singing, and delightful food provided by a family at the RMH. A good time was had as we congregated with our close friends to enjoy personally chosen gifts commemorating our time spent together these last several months. Levity was in abundance as we put the sickness and tragedies out of our minds for a few hours and enjoyed the precious friendship of those who have become our new family.
Santa made a brief stop by our room in the middle of the night to eat the cookies and milk we had left for him and to leave a preview of presents representing our Christmas to be had later in the day. My GE friends, Cathy and Tina, helped to make the season bright for many of our young friends at RMH, by sending age appropriate gifts especially for them. We had fun delivering their presents by wheel chair to each all of the lucky kids. It was hard to say who had more fun!
We also got to sneak home to see what Santa had left us at Ronald’s house, and “what to our wondering eyes should appear, but a bed full of presents for my little dears”!
Thank you family and friends for helping make this Christmas one to cherish. It really IS a season for giving. We have been given so much by so many, we truly appreciate the most precious gifts of all, love and friendship! Happy Holidays to you and yours!

Wednesday, December 19, 2001 at 11:27 PM (PST)

Wednesday, December 19, 2001

Day 55

Counts: WBC 4.9
Hemoglobin 9.8
Platelet 107K

Well, we WERE out of the hospital, but as of today we are back in! Different floor, out of isolation, but still the hospital! Fever of 102.5, mouth sores, a kunky, sneezey nose and a painful tummy sent us directly from our early morning clinic appointment to the fifth floor for admission without even a stop back to the Ronald McDonald House. They did a chest x-ray that docs’ say looks ok, but we are still under contact precautions until they discover the source of the fever. They started two new antibiotics, Vancomycin, and Ceftazadime to fight the mystery bug, but fevers mean an automatic three-day stay here.

I am having computer trouble accessing the caring bridge server that explains why I have been unable to keep everyone up to date on Maddie’s progress.

The great news is that Mikaylah was able to fly out here on Monday to be with us over the holidays. She was so excited to be back at the Ronald McDonald House that she kept saying, “I think I’m dreaming, I can’t believe I am back at RMH.” I started her in the school at the house on Tuesday and she has really enjoyed it. She was just in time for Christmas parties, and a visit from animals from the Minnesota zoo. The school currently has 5 students of various ages with two teachers.

Santa has been at RMH twice this week, so both girls are confident now that he will be able to locate them this Christmas Eve. One of Santa’s helpers came all the way from Michigan on his Harley to bring good tidings of great joy and PRESENTS to Ronald’s
Kids.

A big thanks you to Ty; Drew and Peggi Trimble for helping to get Mikaylah back out here to join us. She is just what the doctor ordered for Maddie’s spirit. She reads to her and holds her hand during all the yucky times. She can hardly wait to sleep overnight here in the hospital, she and I sleeping in a small, uncomfortable chair, with nurse and beeper interruptions all night long…sound like fun to you??

Sunday, December 09, 2001 at 05:28 PM (CST)

12-09-01
Day 45

As I sit here stroking her long, slim fingers with purple nail glitter, watching her sleep tonight, I am reminded of our first night together in China. I watched her sleep that night too! I marveled at her perfection, the round little face, the soft smooth skin, and her eyes that were part way open, so as not to miss anything while she slept. She lay quietly sleeping; with the small Noah’s Ark pillow I had just given her clutched tightly in her hands. I was consumed with love and felt blessed by the miracle that made her mine. We bonded instantly. I dried her tears when the Chinese government took her out of the arms of her foster mother that day, and I felt like the luckiest mother on earth.

I never dreamed our life together would be like this, but it is, and as hard as it is, it is worth every second I have with her. I never know what our tomorrows will bring, but whatever it is, I’ll deal with that too, because I am the luckiest mother on earth!

P.S. - I'm having some trouble updating the web page recently due to computer problems, hopefully we can get them fixed soon.

Wednesday, December 05, 2001 at 11:59 PM (CST)

12-05-01

Day 41

Counts: WBC 6.2
Hemoglobin – 7.9 (Transfusion today since I fell below 8.0)
Platelets – 143K

On Monday Mom organized a beautiful sharing/remembering service in the hospital chapel for several of our special little friends who have gone to heaven where earthly hurts are left behind, to a destination without barriers, and without illness. Rev. Laura Kelly, the Methodist Chaplin here, helped her put it together. We lit candles to symbolize the love that continues to warm our hearts ever since they touched it. Adrian, father of Andrea with Hurlers disease, sang Amazing Grace in honor of Cole Smith. We filmed it for Amanda&Chris, and Rob&Ria.
Mom said we counted our chickens before they hatched. Mom had stuffed packed and her mind set on a good night’s sleep. I guess it wasn’t meant to be, my blood tests were positive for the CMV virus. They started me on a special 14-day drug protocol (Ganciclovir). If I can take it orally, discharge may still be in the picture, but no date has been set.
My doctor team had a meeting about my physical condition today, and there is talk about moving me up a floor to in patient rehab with a concentration on working to get me back on my feet. Currently I can’t stand on my own to even try to walk with my walker. This could be drug related, or weakness from being bedridden, instead of disease progression. We all hope it’s a combination of the first two, and want to continue the aggressive PT and OT to rule out the third. I really want to see how well Paula decorated the Ronald McDonald House for Christmas, but I would also like to walk over there by myself!

Wednesday, December 05, 2001 at 12:44 AM (CST)

12-04-01

Day 40

WBC – 4.7
Hemoglobin – 8.8
Platelets- 137K

I FINALLY HAVE IT BACK!! My favorite pillow has been returned, I have not let go of it since it was returned early this morning. (They are still looking for the second lost pillow.)
The rumor is that I may be discharged tomorrow after doctor’s rounds. Mom will have to hook up the pump and continue tube feedings, as my caloric count is nowhere close to what it needs to be. I will have to continue tasting food even though it doesn’t always interest me. We will also continue PT/OT five days a week, plus daily clinic visits on an out patient basis. 50 days of irregular/interrupted sleep patterns is enough, especially for Mom, make up doesn’t begin to cover the dark circles under her eyes!
I met with another special doctor about my mobility loss, weakness and soreness in my arms, legs and back. She will monitor my progress and write orders for my therapists to determine if the disease has progressed or if it is due to the stress from drugs and hospitalization. She will join us at therapy tomorrow to make sure the treatment being used is the most beneficial for my condition.

Monday, December 03, 2001 at 03:34 AM (CST)

12-2-01
Day 38

The good news is; White Blood Count – 4.5
Hemoglobin – 9.7
Platelets – 136K
And they found my favorite pillow at the Laundromat.
The bad news is; they have yet to return it to me, and my brand new duplicate suffered the same fate over the weekend and they have yet to find it!

It started out to be a wonderful weekend, Dr. Charnaus, who is running a close second to my favorite Dr. Lochman, (Neurologists) prescribed Vioxx to help with the pain in my extremities. He said if I take it before PT and OT he believed it would help with the pain.
He is brilliant, it is a miracle drug, and it tastes good! PT and OT went so well that after an hour of the two together I asked to ride the tricycle up to my room on the next floor. I challenged Mom to a race and left her in the dust! Once on my floor, I did a victory lap around the nurse’s station, with a princess wave to my adoring fans!
It was when I finally settled down in my bed for a little R & R that I realized that my second favorite pillow had gone out with the dirty linens! Things got decidedly worse from that point on, I was a basket case, homesick, missing Wyatt and Mikaylah, and just not in the mood for anything. Then to make matters worse, my Hickman catheter sprung two leaks very close to the exit site in my chest. Mom quickly got our nurse who clamped it off to keep the blood and meds from escaping. I knew it wasn’t a good sign when my room filled with doctors! The decision was made to go down to surgery where two surgeons would attempt a repair of my central line. I could tell by the look in Mom’s eyes that she wasn’t sold on the patching idea, but she went along to surgery anyway.
Of course she had to politely explain that we were a team and that if she wasn’t allowed in for the repair attempt, I wasn’t either. They revised their game plan, and let her go in and observe. It is darn good thing because I was only half asleep, and I needed her there to hold my hand. After two hours they declared victory and I finally went back to my room to let the place set. Mom was more worried after the patch job, and I heard her tell the nurse that patches were for waterbeds and tires, not for her babies Hickman. Early in the a.m. they learned that Mom’s know best, it hadn’t worked and I had to go back down to surgery to have them pull the line out and put another one in! I was completely sedated for that procedure. Much later that night, more problems came up when my NJ (nose tube) plugged up so I couldn’t get food or meds for the evening. I had to go back down for x-rays to find out where the problem was. The decision was then made to wait until Sunday a.m. to replace the NJ tube. Early on Sunday morning I went back downstairs with mild sedation to fix the NJ tube situation. So as you can see, we were very busy.
I was so tired after all of that; I took a 2-hour nap. When I woke up, I was hungry for a taco and guacamole. Mom said neither of those were standard hospital fare, so she ventured outside to satisfy my cravings.

Monday, December 03, 2001 at 02:16 AM (CST)

12-2-01
Day 38

The good news is; White Blood Count – 4.5
Hemoglobin – 9.7
Platelets – 136K
And they found my favorite pillow at the Laundromat.
The bad news is; they have yet to return it to me, and my brand new duplicate pillow suffered the same fate over the weekend and they have yet to find it!

It started out to be a wonderful weekend, Dr. Charnaus, who is running a close second to my favorite Dr. Lochman, (Neurologists) prescribed Vioxx to help with the pain in my extremities. He said if I take it before PT and OT he believed it would help with the pain.
He is brilliant, it is a miracle drug, and it tastes good! PT and OT went so well that after an hour of the two together I asked to ride the tricycle up to my room on the next floor. I challenged Mom to a race and left her in the dust! Once on my floor, I did a victory lap around the nurse’s station, with a princess wave to my adoring fans!
It was when I finally settled down in my bed for a little R & R that I realized that my second favorite pillow had gone out with the dirty linens! Things got decidedly worse from that point on, I was a basket case, homesick, missing Wyatt and Mikaylah, and just not in the mood for anything. Then to make matters worse, my Hickman catheter sprung two leaks very close to the exit site in my chest. Mom quickly got our nurse who clamped it off to keep the blood and meds from escaping. I knew it wasn’t a good sign when my room filled with doctors! The decision was made to go down to surgery where two surgeons would attempt a repair of my central line. I could tell by the look in Mom’s eyes that she wasn’t sold on the patching idea, but she went along to surgery anyway.
Of course she had to politely explain that we were a team and that if she wasn’t allowed in for the repair attempt, I wasn’t either. They revised their game plan, and let her go in and observe. It is darn good thing because I was only half asleep, and I needed her there to hold my hand. After two hours they declared victory and I finally went back to my room to let the place set. Mom was more worried after the patch job, and I heard her tell the nurse that patches were for waterbeds and tires, not for her babies Hickman. Early in the a.m. they learned that Mom’s know best, it hadn’t worked and I had to go back down to surgery to have them pull the line out and put another one in! I was completely sedated for that procedure. Much later that night, more problems came up when my NJ (nose tube) plugged up so I couldn’t get food or meds for the evening. I had to go back down for x-rays to find out where the problem was. The decision was then made to wait until Sunday a.m. to replace the NJ tube. Early on Sunday morning I went back downstairs with mild sedation to fix the NJ tube situation. So as you can see, we were very busy.
I was so tired after all of that; I took a 2-hour nap. When I woke up, I was hungry for a taco and guacamole. Mom said neither of those were standard hospital fare, so she ventured outside to satisfy my cravings.

Friday, November 30, 2001 at 03:09 AM (CST)

Thursday 11-29-01
Day 35

No pillow yet today! Our friends at the Ronald McDonald House are trying to help, they braved the snow drifts and brought over two of my back up pillows from the house. Bev even hit several stores to try to find a duplicate, she snagged one the same size, but it’s
not the real thing. I am warming up to it.
My counts were super today – WBC 5.9, abs Neutrophils 4.1 and platelets 132K. You all are doing a fantastic job with your prayers!
I had a couple bites of Cheerios with brown sugar, chicken noodle soup, and baked chicken today. I even had a bite of a candy cane. (I ate the nutritional stuff to make MOM happy; the candy cane was for me!)
Did I tell you that I meet another Minnesota Viking player? He came right in my hospital room, called me by name, and then let me sit on his lap for a picture. His name is Farren Wright, #59; he had a beautiful smile…move over Cleveland Browns, that is the fourth handsome Viking player I met! To bad he wasn’t older for my MOM!
I still am not a happy camper when it comes to physical therapy. The braces hurt my feet and legs and I cannot stand the pressure on my legs when they try to make me stand. I don’t even get excited about all the neat balls, slides and toys they have down in their special room because it hurts so much. Mom worries because she doesn’t know if she should be tough and push me to try or lay off because of the pain. I must admit, I really lose it down there, and it is not a pretty sight, but I have been in bed for 35 days and my legs just don’t want to work!! Mom had a discussion with Dr. Stella today to see what she thought about the situation (Mom said she understands because she is a Mom and a doctor), and she decided to bring our buddies from neurology in tomorrow to see what their opinion was. So more doctors tomorrow, plus PT!!!
Mom doesn’t know this, but I also heard Dr. Stella mention the magic word, DISCHARGE, but it was in the same sentence with “better results in PT first, and trading IV meds for meds via the NJ tube”. So there is no magic in the word yet.
Two year old Cole Smith, our little pal and darling little neighbor here for months lost his battle with leukemia this week. He had a sweet little voice like mine, and a charming personality that made it love at first sight for all that met him. It is a tragic loss and one that leaves a hole in our hearts. Please keep his loving family in your thoughts and prayers as they courageously face life without him. www.caringbridge.com/page/colesmith.

Friday, November 30, 2001 at 01:29 AM (CST)

Tuesday, November 27, 2001 at 12:21 AM (CST)

Day 32 11-26-01

My counts were up today!!! No fevers for two days, and the best part of all; I got to go out of my room for the first time today to go to physical therapy!! It is a wonderful thing!
My legs are very weak and hurt to stand on them so PT was not my idea of a good time, until they suggested I go to their secluded room with all the cool therapy toys. Once there, I changed my mind because it just hurt too much to move about on my own. Then I spotted my favorite red, racing bike, and Mom challenged me to a race! My competitive spirit won out and we were off! I guess it has been a long time since Mom rode a bike; she really was no competition. My doctor wants me to have PT two times a day, three times a week now, easy for her to say!
I was one tired puppy when I finally came back to my room. I just wanted my itch medicine and a nap. I snuggled down in the freshly made bed, reached for my favorite pillow, and couldn’t find it anywhere. Anyone that has a favorite anything, knows what it is to lose your security blanket, nothing is right with the world until you find it, right?
Mom set out to solve the mystery of the lost pillow, only to learn that it accidentally got thrown in with the bed linens to be sent out for washing. Can you imagine how happy I was to learn that it was on a truck somewhere on it’s way to an industrial Laundromat?
Raffi music couldn’t even make me smile. Mom placated me with other toys and stories of my pillow deciding to go out for an adventure, but I wasn’t buying it. Finally after a warm bath, removal of my stitches from the biopsy, and promises that the search was continuing for my dearly beloved pillow, I feel asleep.
Thanks for the soft, cuddly, musical lamb, Jas! Mom turned it on to help me sleep tonight.

Saturday, November 24, 2001 at 02:48 PM (CST)

Day 30 11-24-01

A family who had lost their wife/mother to cancer provided Thanksgiving Dinner. It was their way of giving back, they said. They decorated the tables with holiday fanfare, and decorated our lives with unselfish giving of their time, comfort, and delicious food. Maddie slept through the bountiful feast, but I ate enough for both of us! Just like at home, there were plenty of leftovers to be warmed up and eaten for days!
Her unexplained fevers continue, as does the itching. The fevers cause her little body to work so hard, which in turn makes her exhausted. The itching is continual and makes s sleep difficult to come by without the help of medication. The investigation continues as to the cause of both, and a decision has been made to treat her for the adenovirus she had previously, just as a precaution. I rub her down from head to foot 4 times daily with topical steroid creams, and they have started to infuse steroids as well. The steroids should help with fevers, itching and any graft versus host disease she may have internally. The down side to them is that they do tend to suppress the immune system some more, so we have to continue keep her germ free. We had trouble with a blockage in the NJ, feeding tube, so we called Sandy, our kid friendly x-ray tech, who set us up quickly with a doc to unblock or replace it. We lucked out, the doctor put a long wire through it (kind of like those toilet snake contraptions) straightened out the placement internally and then used water pressure to unclog it. (Maddie was sedated, thank goodness, I wish I could have been!)
For some reason our white blood cell count has been going down for a few days, it is now 2.8, down from a 6.3 high. There was no ANC count today either, so I will ask the doctors about that when they come in. Hemoglobin is at 10.2 and platelet count is at 56K.
She had a good day with her speech therapist yesterday, soundly beating him at Candy
Land. She still is not much interested in PT, as her feet and legs hurt and are a bit swollen yet. She did allow the therapist to do stretches with her that is equally as important.
She had a delightful conversation with her “Omaha”, Grandma, from Holland, and was so excited to hear from her.
I convinced one of the more talented families here that they had to sing for their Thanksgiving dinner, and my persuasion techniques truly paid off. They delighted Maddie and I with song at our hospital room door, and then did a concert for the families at the Ronald McDonald House. Maddie sat up in bed for her personal concert, and was thrilled when they honored her request for “Michael Row the Boat A Shore”! It is the little things here that make a big difference!

Saturday, November 24, 2001 at 10:12 AM (CST)

Day 30 11-24-01

A family who had lost their wife/mother to cancer provided Thanksgiving Dinner. It was their way of giving back, they said. They decorated the tables with holiday fanfare, and decorated our lives with the unselfish giving of their time, comfort/joy, and delicious food. Maddie slept through the bountiful feast, but I ate enough for both of us! Just like at home, there were plenty of leftovers to be warmed up and eaten for days!
Her unexplained fevers continue, as does the itching. The fevers cause her little body to work so hard, which in turn makes her exhausted. The itching is continual and makes s sleep difficult to come by without the help of medication. The investigation continues as to the cause of both, and a decision has been made to treat her for the adenovirus she had previously, just as a precaution. I rub her down from head to foot 4 times daily with topical steroid creams, and they have started to infuse steroids as well. The steroids should help with fevers, itching and any graft versus host disease she may have internally. The down side to them is that they do tend to suppress the immune system some more, so we have to continue keep her germ free. We had trouble with a blockage in the NJ, feeding tube, so we called Sandy, our kid friendly x-ray tech, who set us up quickly with a doc to unblock or replace it. We lucked out, the doctor put a long wire through it (kind of like those toilet snake contraptions) straightened out the placement internally and then used water pressure to unclog it. (Maddie was sedated, thank goodness, I wish I could have been!)
For some reason our white blood cell count has been going down for a few days, it is now 2.8, down from a 6.3 high. There was no ANC count today either, so I will ask the doctors about that when they come in. Hemoglobin is at 10.2 and platelet count is at 56K.
She had a good day with her speech therapist yesterday, soundly beating him at Candy
Land. She still is not much interested in PT, as her feet and legs hurt and are a bit swollen yet. She did allow the therapist to do stretches with her that is equally as important.
She had a delightful conversation with her “Omaha”, Grandma, from Holland, and was so excited to hear from her.
I convinced one of the more talented families here that they had to sing for their Thanksgiving dinner, and my persuasion techniques truly paid off. They delighted Maddie and I with song at our hospital room door, and then did a concert for the families at the Ronald McDonald House. Maddie sat up in bed for her personal concert, and was thrilled when they honored her request for “Michael Row the Boat A Shore”! It is the little things here that make a big difference!

Wednesday, November 21, 2001 at 12:52 AM (CST)

Day 26 11-20-01

SAVOR THE DAY: Maddie is 100% engrafted!!!!!

Translation: 100% of Maddie’s bone marrow is now the donor’s.

Thank you God, Amen.

Monday, November 19, 2001 at 12:53 AM (CST)

11-18-01 Day 24

My white blood count is 4.1, my hemoglobin is 9.1, my abs neutrophil count is 3.6 and my platelet count is 56k. (I always tell you about those important things first because several of my nurse and doctor friends check out my journal and understand the importance of that data! The rest of you can fast forward.)
I still can’t shake the fevers, and my stomach just won’t cooperate. I promise you that when I am a teenager, I will never, ever put my finger down my throat to throw up, I have had my fill of throwing up! I have been a bit dehydrated so I am getting fluids for that. Food still doesn’t look good to me, and now I have Thrush, so eating and drinking is not high on my list of priorities.
The anti-fungal drug, Ampho, and I just don’t see eye to eye, so after the second bad experience, chills, shaking, high fever, itching, they decided to switch me to Abelcet. This is also a very potent drug, which requires pre-meds, and mid- meds to offset the side affects. They decided to give my body a day off since it has been through so much. I got my first dose last night then, and despite the meds did develop a fever of 103.5.
Sleep is a rare thing here, for both Mom and me. I just dose off, and it’s time for a nurse to take vitals, or it’s doctors rounds, or I am sick and itchy, or I have to go potty, or the ENYA CD stops playing, or the worst thing, the darn beepers on my pump go off and my nurse is to busy to tend to it! This all affects my Mom more than me; sleep deprivation on her is NOT a pretty thing! So, today, I let the drugs control me, so she could sleep! And sleep we did…it was a lazy, non-productive day of snuggling in my bed, just Mom and me!
Friday was my sister Mikaylah’s seventh birthday. Mom and I were very sad that we could not be there to celebrate with her. We called her just when she was ready to blow out her birthday candles, so we could sing happy birthday to her, and pretend we were right there beside her. Mom said that when we get home, we would celebrate together, every single holiday/special day we missed with one big party!!

Thursday, November 15, 2001 at 02:48 AM (CST)

Tuesday was a very tough day and night for me! The itching and swelling makes it difficult to rest comfortably. I had a skin punch biopsy today to determine if the skin problem is Graft versus Host Disease. They gave me drugs to help me through the procedure, but trust me I was awake. I have stitches, but don’t remember much about it. I had another chest x-ray and CT Scan today to check for infection that might be causing the fevers. I ate part of a banana and a few grapes with Rob, but still throw up several times. My counts continue to come in, but they have increased my anti-rejection med (CSA) to help them. They are taking blood samples several times a day now, and I immediately got platelets and red blood cells when both dropped below acceptable levels.
I gave Mom a good scare at Midnight when I had an adverse reaction to the anti-fungal drug (Amphotericin) I received for the first time. I stared exaggerated chill like symptoms, my fever started climbing, my eyes seemed unable to focus, and I was screaming for everyone not to touch me. My breathing was irregular and my fever climbed to 104.5 within minutes. They quickly gave me more drugs to stop that reaction, stopped the first drug and the tube feed. It took several hours before I felt like a normal little kid again, and Mom aged 10 years in a matter of minutes. When things finally settled down, and I nestled in by Mom to sleep, I had to keep pushing her to her side of the bed because I was afraid she would smother me. I heard her tell the nurse she was afraid I would stop breathing and no one would know it. So, the nurse put the red magic light on my finger for the night to monitor my breathing. I heard Mom talking to the doctors this morning about it, and they explained that the drug is necessary to prevent fungus infections that are very dangerous for me. They will now pre-med, and mid-med me before the next dose, and Mom told them she wanted the doses to start in the morning each day so full staff of docs and nurses would be available to help if necessary. I am glad she is on my side! They also gave me some topical steroid cream to rub all over my body to help with the horrible itching! I am also on lasix to help reduce some of the water retention.
Did I ever tell you about the miracle cream they make here for my very sore bottom? It is a special mixture of Destin, Nystatin cream and a big shot of a barrier cream, which helps heal and prevent sore bottoms caused by the drug and radiation regimen. They call it Butt Paste, or Bottom Frost…I call it heaven!!!

Tuesday, November 13, 2001 at 12:42 AM (CST)

Day 18
I have been so sick and my Mom has been very worried about me. Fevers as high now as 103, (anything over 100.5 is a major concern for kids in my condition), High blood pressure, vomiting, swelling, itchy, spotty, skin, and not eating or drinking anything, have kept Mom awake guarding me since last week. I have had two chest x-rays, and two CT scans to find the source of the fever to no avail. The doctors think now it could be Graft Versus Host Disease, or GVHD as we call it here, but the only way to be sure of that is a skin biopsy, (doesn’t sound like fun to me) and it is to soon to be conclusive with that test yet. They increased my CSA, anti- rejection med, and started GCSF to help bring in my white blood count (WBC). I have gotten blood and platelets a couple times this week to help boost my counts as well. They have to pre-med me before they do that because I have a reaction to that now. As you can see there is not a dull moment around here!!
The positive news is, my hemoglobin is 10.9, my WBC, which has been up and down all week, is 1900, my platelets are 56,000 (I have to stay above 40K to keep that platelet infusion from happening). and my ANC level is 1.0. Non-medical good news, the story of Alvin and I appears in German Shepard Magazine, sold at PETCO. It is a handsome picture of him and a nice story about us.
We got a surprise visit form a good friend of ours from GE Lighting, now Rubbermaid, Greg Manis, Mom’s friend that loved to play practical jokes on her. I had so much fun with him; he sure is a good “spoiler”! HE even knows how to sing Raffi songs! I guess that is because he is a Dad now, and will soon have baby Manis number two.
Another very special friend came this week; Rob Prange, Rick and Robin’s dad came all the way from Holland to see us again. Eight year old Robin, lost her battle to leukemia in October. Despite the sorrow in his heart, and the bittersweet memories of his time here, he gave of his time and friendship to help us! It was a difficult journey for him, but a gift to us that my Mom says we can never repay! He helped give me a bath, rubbed my feet, helped us back and forth to x-ray, and even spoiled my Mom by giving her a break and taking her out for a great Chinese Dinner. Thank you so much Ria and Rick for sharing him with us!
Mom read this beautiful description of friendship somewhere, and it truly sums up how we feel about all of you…”There is no wilderness like a life without friends; friendship multiplies your blessings, and minimizes your misfortunes: it is a unique remedy against diversity and it soothes the soul.” Thank you all for “soothing our soul”!

Tuesday, November 06, 2001 at 12:32 AM (CST)

Day 11 11-5-01
Wade was a quiet, polite, 16-year old boy that loved John Deere tractors; Trevor was half his age and an avid Minnesota Vikings fan; premature baby Kevin was one of the darling triplets, they all fought valiantly against the odds and lost their battle last week. They were members of the Ronald McDonald House family and will remain in my heart forever. They will be sadly missed, please keep their loved ones in your thoughts and prayers as they struggle to live with their loss.
High blood pressure, fevers, and an itchy rash persist for my little Maddie. She is on medication to control/eliminate the problem, but as you might imagine, she is not feeling very well. She still does not have an appetite, although I did coax her to try a sip of Pepsi, and one of Aunt Lia's cut-out cookies this evening. She is getting her caloric intake by way of PediSure through her NJ tube in her nose.
They will do another CT scan tomorrow to look for any possible signs of where the fever may be coming from. I suggested she might have a bladder or urinary track infection, and doctors told me that could be a possibility and welcomed the input. I’ll send urine for culture in the am.
Her white blood count is jumping back and forth from 300 to 400, but they said it is too early to tell anything by the numbers. Her hemoglobin is 8.3; if it drops below 8 we will get a packed red blood cell infusion. Her platelet count is 46K, if it drops below 40K she will have to receive a platelet infusion.
Despite all that she goes through each day, she remains positive, and manages a smile for her favorite nurses. She sings with Raffi or Rick Chareete every day, and requests ENYA for her nighttime serenade. The beautiful, distinctive, little voice is horse from the sores in her throat, but her songs still warm the hearts of so many here. Our two neurosurgeons just dropped by today to feel the warmth of her love, they now know what I have known all along, she is so very special!

Friday, November 02, 2001 at 01:18 AM (CST)

Day 7
High blood pressure persists for me:164/110 has been the highest. I just started amlodipine to get that under control, but it still spikes, so for that, I am taking nifedipine. My throat is sore, and I am very tired. I really have not been very hungry or thirsty (Mom wishes she had that problem) for a few days, so tomorrow they will take out the NG tube(empties in the stomach) from my nose and replace it with an NJ tube (by passes the stomach) for oral medicines and liquid food. They will also put a new stitch in my Hickman since the initial one has pulled out. I will be asleep for the whole thing – thank heavens!
Yesterday was so much fun! The day started with Minnesota State Troopers delivering a jack-o-lantern filled with candy and a teddy bear. They looked so professional in their fancy uniforms, I have never seen a patrolman that close before, Mom says she has…
I have to admit I was pretty darn adorable in the bunny costume, Mom wore pajamas with feet in them and a fancy crown, she definitely wasn’t a sex symbol! When the doctor’s and nurses came in my room they had to bring me candy or I could make them go back out and get some before they could do anything to me. I even was allowed to ring the nurse button for no important reason other than to bring me more candy to satisfy my sweet tooth! Only in America, could you sit in bed, and get more candy than if I had shopped at Wal-Mart! How lucky can I be?! The only thing that could have made it better would have been to have all of you here with us!
I didn’t feel good enough to eat my treats, but I put them in a safe place for later. I got a very special serenade later in the evening from a famous comedian, refrigerator cleanliness expert, my favorite RMH House MGR(keep that a secret or she will get a big head) Miss Paula Noonan! She sang the Purple People Eater to me, she won’t win an Oscar for her rendition, and we hope she keeps her day job!

Tuesday, October 30, 2001 at 01:15 AM (CST)

Day 4
Forget to tell you that Mom got to meet and get autographs from the OAK RIDGE Boys on Friday night! They did a Fall benefit for the Ronald McDonald House, but stopped to meet the families before the show. Wyatt stayed with me while she ran over to meet them...Mom was pretty excited, but Wyatt said there was better music on his Game Boy for me to listen to.
My blood pressure continues to be high, off and on, it was 128 over 100 earlier. So tomorrow there will be a discussion about putting me on high blood pressure meds for awhile instead of being reactionary with the Nifederpine.
I am taking little bites of several things, but not really enough caloric intake. I am sure that will be discussed tomorrow too! I did drink some of Mom's, BTS, hot chocolate tonight with a KIWI fixed just like Rick's grandma did. I did do physical and occupational therapy today, and Lisa and Wendy both thought I had good trunk control and was steadier on my feet.
Janet and Laura from Mass. sent us our Halloween costumes today. I am so excited, I am going to be a pink bunny. I can't leave me room, but Jason told me that they do a reverse T&T here, where the staff opens my door, dressed in costume, I say "T or T" and they throw me candy before the danger buzzer goes off on my door. Sounds like fun to me!
CBS, Channel 4, here, did a story about, me , my dog, and MLD and it aired tonight! It was so awesome! Everyone on 4A and at the RMH was watching as I made my debut! I thought I looked fat, Mom said I was beautiful! Alvin, Mom, Mikaylah and Dr. Peters were in it too! Nurses, doctors, and RMH friends were asking for my autograph afterwards, imagine that! Can I get my foot print on that sidewalk in Hollywood?
Wyatt says maybe he could put it on the web for all to see once he gets a copy, won't that be cool?!

Saturday, October 27, 2001 at 07:55 PM (CDT)

A very special guest arrived on 10-24, and I have been in heaven ever since. My handsome brother Wyatt arrived (Thanks to Michael Wilkie) bearing gifts for me and Mom from him and CeCe…Hello Kitty for me and Heath Bars for mom. Mom says we are like young lovers,(whatever that means) because we can’t keep our hands off of each other. When he leaves the room for a second, I need to know where he is going and when he’ll be back! I even made up several songs that I sing for him. I think the nurses think he is handsome too!
TRANSPLANT DAY was 10-25, Day 0. The donor marrow arrived here and was cleaned and each cell was counted individually before it was sent up to us on the BMT unit at 12:00 midnight. The transfusion started, but was stopped about half way through when I started screaming that my head hurt. My blood pressure had skyrocketed to 140 over 90, and I had started to break out in red spots. The Doctor came in and gave me medicine for both problems and they continued the process after my pressure was under control. I was definitely awake this time, and for several hours after that when Mom and Wyatt wanted to go to sleep!
Mom and Wyatt take turns sleeping in bed with me at night, I love to snuggle with them. I always hope that in the middle of the night the nurses will bother them for vitals instead of me.
I am not very hungry or thirsty, so I heard the doctors talking to Mom about an alternative feeding method. Early next week, they will either put an NJ tube (feeding tube) in or use what they call TBN (watery food in a bag) that is inserted into my Hickman catheter in my chest. There are risks with both, so I’ll leave that decision to my Mom!
Day plus 7, is when we can start to look for a white blood cell count – stay tuned!

Saturday, October 20, 2001 at 10:27 AM (CDT)

It is with a heavy heart that I finally update Maddie's journal page. We have lost several more of our our sweet, precious children in the last two weeks. We live as a family here at the Ronald McDonald House with one common goal to get our children well! We share everything we have in order to accomplish that goal including medical supplies, gifts from home, food, love, heartache, and joy.
A loss of one member of the family affects us all in much the same way the world is affected today by the events of 09-11. It is September 11 here every single day! We face uncertainty, shock, terror, disbelief, anxiety, and an overwhelming sense of powerlessness as we watch our children fight these devastating, life-threatening diseases. We feel their never ending pain and are helpless against an enemy we can not see and have limited knowledge of how it can be defeated.
Robin Prange, a beautiful, 8 year old, twin, from Holland, lost her 5 year battle against Leukemia on October 11th. Her loving parents, twin brother, and grandmother share a deep bond with us that can not be severed by time or distance. They left footprints on our heart and a memory deep in our soul of a love that was self-sacrificing, unconditional, and inspirational, I feel blessed to have them in my life...they are my heroes!
Maddie entered the hospital the hospital on Tuesday after we took the Prange's to the airport for an emotional farewell. She is in good spirits. We decorated her room in festive fall colors, with glow in the dark flowers, butterfly lights hanging from the ceiling, and ghosts and goblins on the windows. We have a bigger room this time - She can ride her favorite bike from the house in it when she is strong enough. I'm hoping this will prevent the backslide I witnessed in her motor skills after the first transplant.
She started her first chemo drug, Busulfan, Tuesday and added the second, Fludarabine on Thursday. They will continue simultaneously until 10-24. CSA and MMF will start on 10-20 which are drugs to aid engraftment, and minimize graft versus host disease. She gets several other medications as well to counter act side affects of those drugs. She will get one dose of total body radiation on 10-24. This protocal is a clinical research study which suggests that by just weakening the immune system, the donor marrow will be able to graft effectively.
In spite of all the saddness surrounded the last two weeks, my Ronald McDonald House family surprised me with an early birthday party. Complete with music from the 70"s, food, satire, gag gifts, and a special guest appearance by GEORGE W!! I will treasure the memory of this celebration for the rest of my life.
Thank you each and everyone for your cards, gifts, contributions, thoughts, and prayers during this life changing experience. I feel so fortunate to have friends and family supporting us through this. You keep us strong - You do make a difference!

Monday, October 01, 2001 at 04:11 PM (CDT)

We have another date for the transplant process. As of today, we will be admitted to the hospital on 10-16, time is yet to be determined. I will then go through the chemo and radiation treatments, and the transplant will be 7-10 days after that. Mom is checking out that exact date and will post here as soon as she knows it.
I have had minimal complications from the experimental drug infusion last week. I had a slight rash immediately that day, and later in the week, had frequent urination problems and mood swings. Mom says I am back to my cheerful little self, with a whole new bunch of songs I love to sing (Raffi and the Beach Boys - where have you been all my life?). Trix yogart, hotdogs on a stick, tangerines and chicken noodle soup are my favorite foods lately. I miss Mary's rice, but Mom has mastered the rice cooker so we are in business again. Can you believe Minneapolis has Moose Tracks Ice Cream here too!! Yummmmm....
I will go back to clinic Wednesday for my second infusion of Cidofivir for the the virus and they will test me to see if it is working.

Thursday, September 27, 2001 at 11:37 PM (CDT)

My transplant date was changed again, I have something called Adenovirus. The good news is that it is not currently in my blood stream, I am shedding it in my stool. The bad news is that it could be deadly to me when my immune system is surpressed. In kids with a normal immune systems, it usually takes 4-8 weeks for the body to eliminate the virus since there is no prescribed medication readily available. There are however, research studies going on utilizing a drug called Cidofovir to eliminate the disease. So several of my doctors, including a new doc of infectious disease control (she is from Ohio, and graduated from Case Western), had a meeting to decide what to do since the research data on this drug has been predominately regarding use on adults. FairView has tried it on one older child, but Dr. JoAnn has used it on a couple children while working in Seattle (all older and heavier than I am). She had to recalculate all doses to accomodate my weight and age. The drug used alone, is highly toxic to the kidneys, so a specific regimen of prophalactic drugs must be given with it to help protect the kidneys. Mom had to make the decision (quickly) to try this procedure, or go forth with transplant on the 25th. She was so scared. After reading all the info she could find on the net and talking to our friend Dr. Mark, we started the drug infusion procedure on Wednesday. We had to wake early so Mom could give me one med in my Hickman, and then be at the clinic EXACTLY an hour and a half later to start infusion of saline, followed by the drug, followed by more saline, and two doses of the first drug at timed intervals. All infusions had to be perfectly timed and monitored, so we were in clinic most of the day. Tests will be run next week, and we will go through the same procedure next Wednesday. New transplant logistics are being worked out, but will be determined by test results. Stay tuned...
We decorated our room here like a romantic getaway for bridal couples, complete with wine, scented sheets, candles, Yanni love songs,etc. for our friends Rob and Ria from Holland who have little time alone to celebrate their love because of the illness of their daughter. I think we had as much fun getting it ready as they did when we surprized them with it. Mom and I had a slumber party with other friends so they could do whatever Mom's and Dad's do when they are all alone...

Tuesday, September 18, 2001 at 12:30 AM (CDT)

It has been a tough couple weeks for everyone here. We lost two of our "McDonald House" family that were very close to Mom and I. Ashley Butler,11,told my Mom everyday that she was a teenager in disguise. She was a quiet, young, Christian appreciative of her loving parents and siblings sacrifices to care for her. She never complained about the pain or adversity she dealt with daily. Mom looked forward to her quiet little knock on our door when she wanted a cup of Mom's homemade hot chocolate, or just wanted to chat a little before bed time. We will treasure the memory of knowing her.
The horrific scenes in NYC we awoke to on Tuesday added to our sense of saddness and despair. God Be with and bless everyone during these most difficult times.
I have been under the weather for several days, so Mom and I stayed in our room most of the time. A flu like something has been hitting almost all of the folks in our house here. The good news is that all of my counts were great today despite that and my appetite has picked up. Dr. Peters said I look ready to undergo the next transplant on 10-4. The nurse will call us this week to let us know what time we will check into the hospital on 9-25.
My dog Alvin and I were supposed to be on TV last night, but in light of all the other news, we were postponed until 10-7 after the Emmys. We will keep you posted!
Mom got a real early birthday present on Saturday when our friends from Holland treated her to a flight simulator experience on an F18 fighter jet. She said she was able to successfully take off and land her plane, but is definately not looking for a career change as a pilot.

Monday, September 03, 2001 at 03:29 PM (CDT)

What's new? Well, our room and phone number which are both currently correctly listed on the journal page for one thing! Wyatt has added another page of pictures on the photo album link listed on the journal page for another AND - the SECOND bone marrow transplant has been recheduled for 10-4-01. I will be admitted to the hospital on 09-25-01 for seven days of chemo therapy and one day of total body radiation before transplant. Last week we went through the normal pre-work up for bone marrow transplant which included consultations with specialists in Neurology, Radiation,and Pulmonary Function. They took pictures of my insides and outsides all week! Tests,tests and more tests, and everything looks very good! Our work up Dr., Stella Davies, was wonderful, she explained the chemo regimen and the side effects of the meds involved. She then explained the premeds and profalactic drugs I will be taking to protect me from those side effects. She explained that this is a research study, and that the treatments are relatively new. This procedure will not destroy all of my bone marrow, but we hope it makes mine to weak to fight the new bone marrow from the donor. I will be on other drugs to reduce the risk of graft versus host disease as well. Because my immune system was so recently surpressed, it will be even more important to keep me in a protective, germ free environment. She explained that it has been ordered that I have PT and OT daily while I am on the BMT ward in order to minimize the effects on my mobility which occured the first time. I work every day to regain what I lost the first time. I walk with a walker now, and despite my determination to be independent, I struggle to walk without assistance. (The other day I walked 3 blocks with my walker, slowly, but I did it! I slept good that night, Mom didn't as she was worried that I over did it!)A second doctor concluded that I should not walk without my braces for fear of blowing out my knees, due to the degree of hypertension that now exists. He also agreed with my Mom that he sees no intellectual damage as a result of the disease at this point!

I will be a singing TV star on 9-16 at 10:00 PM on channel 4 here in Minneapolis, which by the way is CBS. They filmed my first meeting here with Alvin and I sang them a song. I promise I won't get a big "bald" head!

Mom got me this cool gliter powder to rub on my head after my shower. She gave three of my buddies and I a bath the other night and sprinkled us all with that "fairy dust"and we pretended we could fly! Now all the kids here want fairy dust so they can have as much fun as we do!

Tuesday, August 28, 2001 at 12:11 AM (CDT)

Well, I started my outpatient workup today. I had a chest xray and an EKG. We met a doctor today that we had not met previously, but had heard such great stuff about. She was so awesome! Her name is Stella Davies and she is from England. She acted like she had all the time in the world for us, and answered all of Mom's questions about the upcoming procedures. She explained that while there is no test to see if the chemo and radiation treatments have effectively surpressed my immune system, it is hoped that this new regiment will work to get rid of the cells left behind the first time, as well as the new ones which are still in a weakened state. We have our final consultation at week end with her, and will update everyone then.
We miss Mikaylah so much, but Mom promised to bring her back when I am out of the hospital. Mom's friend Angela came all the way here to fly with her back to Ohio!
The weekend before last Mikaylah and I had so much fun with Carley and her Mom from Michigan. Mom met them the first time she went to China to adopt in 1995. Carley is from the same orphanage as Mikaylah.
Mom told me we were having company tonight,
the vice president, but when he arrived I was surprized because he looked so much younger than he does on TV. Mom explained that it wasn't Dick Chenney, that it was her manager from GE in Connecticut,who is a VP. He took us out to eat for dinner. We walked to the hospital and showed him where my room will be next week. He brought me goodies from his wife and kids. He was very nice, but I couldn't wait until he left so I could crack open that goodie bag!

Thursday, August 23, 2001 at 12:13 AM (CDT)

It's been a very busy few days. We moved to a bigger corner room at the RMH, so now we have room for more company! But, Mom is still working to get organized in our new digs. WE have a big loft now where Mom can work more privately as soon as she finds a computer cord that will reach from the first floor.
We met with Dr. Peters Monday and he said my WBC,Hemoglobin, and Platelets are STELLAR! He gave Mom the copy of the new protocol for the second transplant. We will be part of Dr. Peters clinical research study. The outpatient work up starts on 8-27, and luckily for me none of that will require sedation. This time I will not have an MRI or an EMG, but I will have an Echocardigram. Mom told them I did not need the neuro-psych exam either and had them remove that from the schedule. She told them I was brilliant and that she didn't need to pay anyone to tell her that! On 9-4 I will go into the hospital to start the regimen to surpress my immune system, it consists of 7 days of chemo therapy, and one dose of total body radiation on the day before the bone marrow transplant.

Wednesday, August 15, 2001 at 01:47 AM (CDT)

Our doctor's appointment was uneventful! No news is good news, whoever said that wasn't waiting to have a bone marrow transplant again! We will see Dr. Peters next Monday, and hopefully learn more.
My good friend Dillion is very sick and back in the hospital. We sent him some presents today with his Mom to help lift his spirits. He is to sick for visitors and Mom is still on her meds, so better to be safe than sorry. Please keep him in your thoughts and prayers.
Mom threw a "When Harry Met Sally Party" Saturday night here at Ronnie's house, and it was for WOMEN ONLY (no kids allowed)! Now I am not sure what went on down in the TV room when all of those Mom's got together, but I do know that real early in the morning I heard MY Mom creeping up the stairs above me to get the karaoke machine...
I continue to amaze my friends here, Mom and her friend Lisa (Alexis and Ashley's Mom)went to Target and took me with them. I insisted on taking my walker, and walked all the way in from the parking lot by myself. (Lisa parks almost as far away from the door as my Uncle Dave!!!) Then I shopped until I dropped and didn't get into the cart once!!
We might be moving again, don't worry address won't change, but phone number will if we get the big corner room - I wonder if that is as prestigious as the CORNER office? It has more room for Mom to work, a cool spiral staircase, and plenty of beds for people to come visit us! Diane, Robin, Angela, Ann are coming soon.

Friday, August 10, 2001 at 10:43 PM (CDT)

ALVIN has stolen my heart! He is even more beautiful in person or is it in dog!? We decorated the dining room for him, and several of our friends gave me presents to give him. I made him a necklace with the beads Laura gave me, and it fit him perfectly! He kissed me when I put it on his neck. He is very smart and already sits when I tell him to. Mom let us sleep on the floor with him and he rested his head right on me so he could watch me sleep. Everyone was amazed at how calm/gentle he was for a puppy. He left early this morning for school, and I cried as he drove away. Thank you Karen, American Airlines, and MEG!
One of my little friends died yesterday, she used to send me messages through the wall when I was in the hospital. She was only 2 and a half, she had Hurlers like several of my other friends here. My Mom was very sad today too! We know now that she won't be in pain anymore, and we hope that knowledge was gained from what she went through to help others.
NEW TRANSPLANT DATES - I just got the news.
Work up starts 8-27, hospital admission 9-4,
and the transplant will take place 9-13. Mom says this is a good omen, September 13th is Wyatt's birthday!

Tuesday, August 07, 2001 at 01:04 AM (CDT)

Mikaylah got to go swimming with the "well sibs" from the RMH house and I had to go to therapy! So Mom let me wear my bikini to therapy, after all, everyone there has already seen this glorious bod! And wouldn't you know it,they were prepared for my attire, Wendy dug out this cool wading pool they had tucked away, and I did all my stuff right in there!! I didn't even need a towel! Everyone there is quite impressed with my improvement, I can ride a bike in the building up and down the halls and I beat Mom everytime she races me and my walker!
Clinic 8-6 was pretty uneventful, except for Mom who finally got drugs for what ails her. My numbers are still good, but no date for re-admission to hospital. Funny thing about that, almost all my friends are getting back in this past week, and they don't want to be in...My best friend Dillion is back because he spiked a fever, and Anna who was leaving Saturday AM, woke up with one and was back in as well. The mood has been a bit somber in the house!
We did learn that the donor has been back in and passed the physical, so now they coordinate his/her time schedule with my chemo/radiation needs.
I did a new trick tonight that sure impressed my fans, cameras were flashing all around me! I couldn't navigate my walker with treasures in my hands, so I walked to playroom, found a basket, put it under walker and kicked it along with my feet. Then, later, I ditched the walker and walked all the way into the kitchen by myself!!! The applause was thunderous!

Friday, August 03, 2001 at 12:00 AM (CDT)

My numbers are still good and am feeling ok.
I continue to go to physical and occupational therapy, and they think I get better every day. Mom is concerned because I am not yet back to where I was when I got here, mobility wise, and at present no one knows if it is disease progression or just because I was hospitalized so long. My tremors are worse, and I have trouble keeping my balance some times. It frustrates and scares me, so I prefer to hang on to Mom much more just to feel safe.
The good news is that things supposedly are moving along swiftly, easy for them to say, and perhaps we will know something on our appointment on Monday. The donor came in for physical, but we don't know any more than that.
It was a sad day at the RMH today as Mom's good friend Lisa found out her baby, who was 100% grafted, lost her graft due to a virus, and is now in the same boat as me...almost. She has to go home and come back in 4 months and do it all over again.
Then Mom's other good friend, who is as goofy as my Mom, had to rush her baby to hospital for a fever, and they readmitted her. She has been here since January. It just doesn't seem fair!
I am so glad Mikaylah is here, and she loves being a resident of the RMH! She has made so many new friends, and has even learned how to speak Dutch! We both have learned Chinese and can sing a whole song all by ourselves!
Keep praying and add my friends Carley, Alexis, and Dillion to your list!

Monday, July 23, 2001 at 03:52 PM (CDT)

Mom had some computer problems so she couldn't keep you updated. Dell came and visited us at the Ronald McDonald House to fix it for us - Such service!
We had a clinic appointment today with Dr. Peters and our numbers look very good. He said they have found another perfect match and that the tissue typing has been done here and forwarded to the donor bank. We now wait for the donor to be notified, do physical and schedule a harvest date. Dr. Peters has been out of town, but has contacted radiology for their opinion as to radiation protocal this time. Our next appointment with Dr.Peters is next Monday, and he promised if he finds out anything between now and then he will give us a call.
Had a great visit with Mom's friend Ann from Maine! We wished she could have stayed longer, but she has two little kids, Mikaylah and my age, who missed her very much. Mom organized a trip to the Target fireworks while she was here, and 27 people from RMH went! It was so much fun - we were like one big family made up of people from all over the country. They were the biggest, best fireworks I ever saw.
Guess what? CBS here is going to do a story on us, MLD , and ALVIN. American airlines is going to fly Alvin and his trainer here from Cincinnatti for the story.
I am going to be a movie star like Jackie Chan!! Is he single for my MOM???
Mikaylah and I learned how to spell Mississippi today - everyone here thinks we are so smart.
We heard the ice cream social put on by our church (First United Methodist) was a huge success! Thank you everyone for all of the hard work. We look forward to seeing the pictures.

Tuesday, July 17, 2001 at 11:37 PM (CDT)

My new braces are marvelous! They are purple gingham, with bees, flowers, and apples on them. Todd, the neat guy that made them for me, says they are very unique, he designed them special to help me get ankles in neutral better and prevent my knees from hyper-extending. It works! I have an SMO, (a plastic piece inside and separate from the AFO - make sense Therese and Kira ?)which is like a little boot that goes to my ankle. Of course, none of my shoes I have here would fit, so Mom, who loves shoes, had to get me new ones! Since we have no car, one of her friends from the Ronald McDonald House went and picked some out for us and they work perfectly! They are so comfy - I told Mom they feel like I am walking on marshmellows! I stand tall, and like to walk again, and even use my walker! (GO to the Ice Cream Social on 7-21 and you can see the video of me strutting my stuff with them on!)
I had so much fun with Aunt Deb and Mikaylah that I didn't want them to leave! Aunt Deb said if she didn't go, all the men at her house would cry, so she left and we kept Mikaylah! One of Mom's friends here said she could fly back with them 8-3 if we can get her on that flight. We are having so much fun together, and Mikaylah keeps asking if she is a resident at Ronnie's house now!
Tonight was craft night at the house and we made butterflies!
Sunday, after church, Ying took us to a neat zoo! Dr. Peters said we could only stay for a short while. We saw many beautiful animals, but no peacocks!
We met with Dr. Peters on Monday and he took me off 3 meds, and cut the dreaded prednosone to once a day! Amen! He said my counts all looked very good, and that they are working on establishing the protocal for the next BMT. They are considering TLI, total lymphatic irradiation this time to catch those renegade Tcells of mine missed the first time. Mom talked to Tim, the nurse doing the donor search, and he is waiting for the tissue match info from the lab here to forward to the donor bank - he estimates 3-4 week time frame to get everything done. WE are praying for sooner. We see Dr. Peters again on Monday for an update.
WE had some excitement last week, we received a call from Paula Noonan, House manager at Ronald McDonald House asking if we would meet some prospective sponsors who wanted to see a room and meet a family. Mom said of course, what day were they interested in - they said how about 10 minutes from now??? Picture this, 5 woman in one room, one bathroom, and we were still in bed...Beleive it or not we did it! Plus Mom even had time to drag out the meds for them to see that process. The guests liked us and were all smiles, until they saw the Cleveland Indians stickers on our window...they were Minnesota Timberwolf(NBA TEAM)
Public realtions front office.

Thursday, July 12, 2001 at 12:16 AM (CDT)

Mikaylah and Aunt Deb arrived safely, but their luggage did not! I guess my Mom's airplane "luck" got passed down to them. It felt like Christmas as we waited for them to arrive in the main dining room. Several of the other families helped us cook a special welcome dinner for them!
Tuesday morning they got a first hand glimpse at our daily clinic visits. Mikaylah got to join in with me in the waiting area where we made several crafts as we waited for our turn to see the docs.
Dr Peters got called away to do a marrow harvest, so we finally met Dr. Laura Ramsey, head of Pediatric oncology. My counts were all good, but since Laura just returned, she had not had a chance to consult with team regarding my second transplant. She scheduled our next visit, which got changed already to Monday at 9:00 am with Dr. Peters. We hope to then know something about donor search progress, dates for admission and next treatment schedule. Until then my meds are on a taper schedule to slowly ween me off.
We had permission to take a short trip to the Mall of America, with mask, and promise to stay away from populated areas, like Camp Snoopy. Mikaylah was so good about me not being allowed to go down there! WE watched from the third floor as Snoopy danced to "Who Let The Dogs Out" and I danced in my stroller.
Wednesday was three therapy day OT,PT,and ST. My new braces aren't ready yet - maybe tomorrow, but everyone is excited about my progress.
Back at the Ronald McDonald house, we had a special treat with Cheryl Sawyer, a Finnish storyteller with magic that was provided as a gift from the folks my Mom works with from GE in Danbury. She was delightful, and alot of my friends were able to enjoy her talents with me. She made balloon animals and tricked us all with her cool magic!
I painted my Mom's toes last night, and then Mikaylah painted mine. Mom says they look great but she says I am not ready to make it a career! (I wonder if that is why she wore her tennies today?)
Mary is busy learning English every day, Mikaylah spends alot of time showing her how to sound out words! Mom reads books to her so she can hear how English words should sound.
We all needed a break today, so MWKIS (Mom's with Kids In Strollers) took to the sidewalk for a melodious, brisk walk where we shared our favorite tunes with college students along the way who probably thought we were insane! Such a social life...

Saturday, July 07, 2001 at 11:25 AM (CDT)

WE are still unpacking from our move to the main Ronald McDonald House, it seems that move is my Mom's middle name! I wonder if the moving team from Ohio (you know who you all are!) would be interested in helping us here??? WE made the right choice! We have alot of friends here and eveyone lends a hand to each other to make life easier.
Mom got tickets for Aunt Deb and Mikaylah to come out to visit us next week - it feels like Christmas!! WE are all so excited!! I hope she like my smooth, bald, beautiful little head?!
Mom organized a PotLuck tonight in the RMH, it should be a good time, since there are people here from Holland, Poland, China and many US states.
We heard from our nurse on Friday that, the team met to discuss the next steps for us, and will wait to discuss their ideas with us on Tuesday.
They want to talk to a Dr. Ramsey that will be back on Monday for her input - Mom says it sounds like a Six Sigma effort!
Thank you as always one and all for the gifts, cards. and prayers that keep us stong and positive here! God Bless!

Friday, July 06, 2001 at 01:05 AM (CDT)

Today was a sad day for my Mom. We went to clinic again, and Dr. Peters was there to see us. Mom thought he was seeing us again because he had such good news, but that was not the case. I don't understand all the details, but I heard 0 % engraftment and Mom's tears told me all I need to understand. I wasn't the only one that didn't understand, Mary was trying to find a translator this afternoon to explain details to her.
On Friday they did a DNA test to see if the new cells I was making inside me were mine or the donor's, today they told us, DNA proved they were mine, hence, 0% engraftment. Mom had two choices, go home and come back in six months and start all over again with a new donor, or stay here and start all over again with a new donor now! IT's not like we love it here, but the choice was an easy one considering the damage the disease could do to me in 6 months. Dr. Peters said the bright spot was that we DID have two choices, because of my stong immune system that wasn't supresed enough, I am healthy enough now to do it again. It was hard to see the brightness in that. So Friday, the doctors will meet to decide the plan for me. I know I must be slowly weined off my meds, and they also must contact another donor, how much time this takes is beyond me. Hopefully we will hear about that tomorrow after their meeting.
On the spur of the moment, we had the rare opportunity to move from our RMH, to the big one, with a bigger room and better view.
WEll Mom says those are the main reasons, but I know the elevator played a part as well. It is a cool room with a loft that I am not allowed in unless Mom takes me up. We can even leave the window open in it. We have a new phone number 612-379-2372 and will have the Oak street address, Mom will put it on the website when she knows it.
I think the new room will be a new beginning for us, just like the next transplant.
Mom did make sure I saw the fireworks! I wore my new lobster hat from Jan and Laura, my beads from Lillian, and took my Moose (from Ann and Kimberlee) and my German Shepard from Lisa! (People couldn't believe
all the cool stuff I had when I moved!)
Please keep me and Mom in your prayers!

Saturday, June 30, 2001 at 11:58 PM (CDT)

Day 23
WBC - 9100
Hemoglobin - 9.0
Platelets - 85,000
ANC - 8500
Friday was a busy day for us! It was the day of the turtle races at the hospital, and one of the turtles was named for me. He lost, but it sure was fun. Food, music, (The real TEMPTATIONS, I never heard of them, but WAS IT JUST MY IMAGINATION that Mom sang all the songs!)
giveaways, and all the donations go to the Child Family life group that made our hospital stay so bearable. From Jason who took the fear out of many procedures for me, to Mom's favorite, the wine and cheese party, these proceeds truly go to a valuable group.
I had OT, and PT and met a new bubble eating guy that put casts on my legs for new braces. I choose purple plastic with bees on them. They also tried me with a smaller walker, I wasn't that happy about it until Mom hooked a GE Pen light(thanks Karen) on the handle bars, and they shut the lights off in the room - then I made it really move. Can't wait to show Kira and Therese - thanks everyone in OT, and PT in Sandusky for the picture and cool toys! You guys are even prettier than I remember! My legs were really sore and tired that day.
The medicine taking ordeal isn't going much better, never knew Mom was so creative (that spray cheese stuff for crackers and prednesone - ugh)
, but it was to no avail. I am my mother's daughter, and I know when I don't like something! So Doc and Mom decided an NG tube for meds was the order of the day. They put it in during clinic and showed Mom how to put all meds through. She crushed acouple of the pills in lemonade and put it in, I have to tell you I am not thrilled about this procedure either. Last night what she put in was coming out the other hole, so we had to go to hospital to check for a kink or block in the line. My good friend nurse Patti, filled a syringe with coke
(the drink) and shot it through to clear the line - ahhh, soda and it wasn't even Soda Day! It worked!
Thought we were going to go to the Mall of America today with my buddy Dillion, but Doc says, NO, to many people, I am still in delicate condition, I've been trying to tell that to MOM for days now especially at med and bed time! So we just sat on the bed watching Chinese movies, and Mary taught me how to sew with a real needle! She is so talented, she sewed my name in sequins on her shirt!
WE see Dr. Peters on Monday and rumor has it he'll be wearing a Cleveland Indians tie - has to be tough for a Red Sox Fan in Minnesota!

Wednesday, June 27, 2001 at 11:31 PM (CDT)

Day 20
WE ARE OUT! WE'RE BACK at our home away from home, Ronald's house! Everyone is so happy to see us! The nurses say it was a record release time and that I was a great, beautiful, brilliant, ok,just great, patient!
Docs say we have along way to go to get out of the woods, but we told them with all the love and support we have we can do anything!
WBC - 15,700
Hemoglobin - 9.8
ANC - 13,200
I feel almost like a new person, Mom feels like Florence Nightingale! I have to take 11 medicines daily, plus the TPN (liguid food)! TO be quite honest, I am not fond of any of the meds and Mom has tried about all the tricks in her basket to make me love them! Some are liquid, some are solid, some are cold, some room temp, some once a day, some as many as 5 times a day! The
Home Health Care Nurse came to test Mom again on the Hickman care and feeding me through it, she is pretty nervous about it, but she managed fine today! She has to mix the IV stuff, hook it into my Hickman, and then hook the dreaded pump to it. This pump is much smaller than the one at the hospital, but it still has the annoying beep! I might add that Mom only had one beeping instance so far and in the hospital it was never ending. We then put the bag of food (looks like MT.Dew, Wyatt) in a backpack along with the pump to take it with us wherever we go!
WE have to go to clinic everyday (7 days a week) for blood work, and will also have routine PT, OT, ST. They are ordering a walker for me, and will also replace my braces with bigger ones to fit my growing feet. I am less mobile than when I went into hospital, and Mom is concerned about that.
I ate chips and salsa tonight - YUMMMM!
Mary went on a tour today with friends from Chinese church. She rode a bike there and didn't even get lost. A young Chinese minister came back to the house with her and they taught me to use chop sticks to pick up all kinds of things, we think it will be good for my dexterity!
WE filled water ballons and I watched from the inside as Mom threw them up at my friend Dillions window!
WE learned all the new rules for going home, and there are alot of them all in order to keep me safe. Mom will make copies so everyone can help us remember them. Did you know that in a year I have to get all my immunizations all over again? I can live with wearing the mask in public, and do a mighty fine job of it, but the shots do NOT excite me.
Maybe AUNT LIA will take me for them...
Pray for the Cure!

Monday, June 25, 2001 at 09:07 PM (CDT)

Day 18
WBC - 6200 -Yipeeee!!
Hemoglobin- 9.2
ANC - 4700
Glucose was high, but since I started eating and am getting TPN (liquid food) that could be the reason, but am taking suff to get it down. My blood pressure spikes too, but has been controlled with medication.
Slowly they are transitioning me to oral meds, I am not all that excited. IF, I don't become more excited, I will have to have an NJ tube (tube in my nose for meds and feeding) for them and food when I get out of here. There were going to put it in today, but Mom wouldn't let them without putting me out! (Wyatt always told me she'd stick up for me!) She says we can address that situation tomorrow, but for the time being I decided I had better take all of my yucky meds with a smile. They took me off of the GCSF or growth factor which was helping those cells graf, could also be causing me leg pain. This may cause my counts to fluctuate, but no t worry unless they drop below designated point,at which time I will have to take it again.
Sunday Mom, Mary, and a translator took a class to learn how to feed me my TPN via my Hickman once I am released. After all of this I think Mom is glad she didn't pursue a career in nursing!
The translator named Ying, was a beautiful, brilliant, Chinese young lady like me. She brought me frsh picked strawberries, and then took Mary to a Chinese Christian church, and out for lunch. She said the whole church would say prayers for me.
I went outside today to feed the birds! I rode in the wagon, and took my walker with me. Once outside, I walked a bit with my walker and everyone outside clapped! I guess I looked pretty cute, with my fancy hat, mask, shades, and new dress!
Mom was going to sleep in the waiting room last night and Mary was going to sleep with me, but I just wasn't ready for that! I got a twist in my line which caused problems,(had to go to xray today to have them find it, Mom spotted it first, they didn't believe her - men!) I have to tinkle every hour, and I just didn't want her that far away. We tried using our walkie talkies, and I was comfortable as long as she was singing to me, but when she quit, I let everyone know I wanted her within eyesight. SO Mom, me and the pump were a threesome AGAIN.
Got packages from Aunt Betty and Uncle Don the Lillys, and the Archambaults. Thanks Uncle Dick for phone card too!
The rumor is if I keep doing so well, I might get out this week - Amen! I can't wait to get back to the ROnald McDonald House!

Saturday, June 23, 2001 at 12:29 AM (CDT)

Day 15
White Blood Count - 1100
Hemoglobin - 7.8 (so I got blood today)
Platelets - 33 (so I got them too!)
ANC - 900
Mary walked from the Ronald McDonald House to the hospital all by herself for the first time today. She also passed her Hickman test! Mom found a translator who was very good at explaining the procedure in Chinese. Mom also contacted the Chinese Friendship Assoc. here to find some other Chinese speaking friends for Mary, it seems unfair for her first visit to the US to be spent only in a hospital. Several women have called her to help, and one woman even lived in the same Chinese city Mary does.
Mary, the sweet dear woman, is working so hard to learn the language, and is such a big help to Mom. She learned how to do the laundry by MACHINE tonight!
I had hoped to go for a walk/ride in the sun today, but my tremors have increased significantly, and the pain in my legs made me very uncomfortable so they had to increase pain meds. It could be from the meds or the engrafment. They also had to get my potassium down and get my magnesium up. The thing that felt the best was snuggling up on Mom's lap while she rubbed my feet and we listened to ENYA on the CD player. I felt Mom's tears on my head as she sang to me, and Mary was there with a kleenex to wipe our eyes...sadness is understood in any language. We'll walk tomorrow.

Friday, June 22, 2001 at 01:11 AM (CDT)

Thursday 6-21 Day 14
My WBC was 1000 again, the ANC count is also 1000, and my platelets jumped to 63 which makes them think I may be starting to make my own! I am still plagued with bouts of high blood pressure 120over 100, but it comes down quickly with meds. My hemoglobin was also good. They are changing some of my meds so I can start to be ready to go to Ronald McDonald house for the rest of my 100 days here.
Mom passed her Hickman class, but said it is a very important job and she'll need me to hold very still since she is a rookie. She learned to flush my lines with a syringe, replace the leads, and clean and dress the incision. Tomorrow she will learn how to administer the TPN (my liquid food). She better get that right, or I may have to start eating real quick here! Our friend from China will go to class tomorrow and an interpretor will help her learn too for back up.
Mary (Xin Sheng Zhang)arrived on time tonight from China. I can't imagine how scary it must have been for her, I was to little and to happy to be afraid when I came. She helped Mom straighten our room, she fed me with chopsticks, and she made me laugh playing games in the rocking chair. She studies the notes Lillian left posted on things in the room, and then she pronounces the words for Mom to see if she is speaking them correctly. I think she likes my bald look, because she gently rubs my head and says soft Chinese words to me. She understands when I say Potty and is very careful with all of my IV lines. She even knew when I pulled the broccoli off the chopstick and put it back on the plate, that just like George Bush, I wasn't eating that stuff!
Our carepartner Pam was a big help in picking up Mary from the airport and then helping to communicate with her. They took her to a Chinese restaurant so she could at least talk to someone about her first day in the USA.
More presents today, Hats, from Lia, cool stuff from Aunt Cin, a neat Beanie from Betty Reed, books and cool stuff from that handsome Mike Gildenmeister and our good friend from Maine, Diane.
Everyone, everywhere, keep praying for a cure. Thank you all for everything.

Wednesday, June 20, 2001 at 11:49 PM (CDT)

Day 13
WBC count 800 again, and the ANC (good new baby fighter wbc) is 800, so Mom got to take me for a walk in the wagon in the BMT unit ONLY. It was brief, but beautiful! I finally had a view and the sun was actually shining!
I wore my hat, my mask, and Mom nade me a tent so no germs could get in! I don't know who had more fun, Mom or me.
I did have to get platelets today, but I can handle that.
I wasn't feeling very good today and preferred Mom's lap to my bed. One of the medicines makes my arms and legs tremor allot and that hurts.
I didn't want to talk to Jim the bubble eating speech therapist, so he gave me a rain check for a game of Candy Land
I did eat some cherrieos, a few grapes and some bubble gum.
I had a visit from my little buddy Dillin from the Ronald McDonald House. His hair is growing back already, he is so cute and just my size.
Dr. Peters came in for a visit sporting a new tie with a pink flamingo on it for Mikaylah. He said he is happy with my progress and said I bet your Mom wishes the Cleveland Indians were doing as well! (Thank you tribe - we got even tonight)
Mom has to take a class tommorrow to learn how to take care of my Hickman. I hope she doesn't flunk!

Wednesday, June 20, 2001 at 01:01 AM (CDT)

YOU ASK FOR IT - More Photos - Go to the bottom of this page and see the link to more photos, this website only allows three so Wyatt put a link to his site where we can show as many as we want. (I am so lucky to have a brilliant brother like him!)

Also check the beautiful Bethany's Hope webpage and meet a family that is fighting for a cure for me after they lost a daughter to this terrible disease!
Must go now to get my beauty sleep - so Mom can take more photos.

Tuesday, June 19, 2001 at 11:39 PM (CDT)

Day 12
WE have been so busy in our little hospital room! Our visit with Lillian and Robin was so wonderful. Lillian rubbed my feet and made them feel so good, and Robin organized my room and my Mom. I got some cool presents too! Mom got a neat Chinese rock from Robin's husband for her collection. Mom got some sleep, some laughs and lots of love, me too! Mom says friends are the flowers in the garden of life!
The good news is - my white blood count continues to climb, it is now up to 800.
I received another bag of platelets over the weekend so I am back up to 45. A new term to learn - neutrophils - the new baby fighter white cells that I need to help me fight infection. I need that count to be above 500 for three days so I can go out of my room, with a mask on only, for a walk in my hall.(which is 10 times bigger than my room)
I have 2 days now with an absolute neutrophil count(or anc) of over 500! Keep your fingers crossed - Mom wants to go out worse than me! Someone tell Dr. Mark the good news, because he is on the Cape with no computor!
I am still not eating much, but I am gaining
weight because of all the medicine and liquids I am taking. I did have some rice tonight(Mom let me eat it with my fingers - wonder if I'll be able to do that when we get back to Bellevue??) some REAL Pepsi and some milk.
Carley, one of my friends here from Michigan, got out, and got back 14 hours later but now she is upstairs on another floor. Tonight Carley and I let our Moms go to a special event, a Wine and Cheese Party, sponsored by the hospital and some very nice volunteers. Two young student volunteers came and watched us so they could go. It was held on the fifth floor of the hospital. When they got there they were surprized to see Cole's mom,(he's from Seattle where Wyatt lives)and learn that he got sick and is back in as well. He was supposed to go home to Seattle on 6-29. I am not sure what goes on at that kind of party, but my Mom was sure in a funny, good mood when she got back!
Nurse Patty shaved the rest of my hair off, and my cousins Dalton and Colin said they would buzz theirs too so we would look alike.I Can't wait to see the picture of them. FiddleFaddle arrived - Happy Days are here again!
Mary arrives here from China on 6-21. I sure hope she likes it here!

Friday, June 15, 2001 at 08:13 PM (CDT)

It is Day 8. My hair is really a mess. It is all over everything now, so I decided I needed to have my good friend Sarah cut it.
Cut it she did, claiming all the while not to be a beautician so I promised I wouldn't tell anyone she did it. SHHH! Don't tell.b I had to hold Mom's hand and I promised her a treat if she didn't cry!
For two days now I have had a WBC count of 100 or 0.1, that can mean that my body and the donor cells are starting to get along together or that they are old white cells of mine.Only time will tell. My hemoglobin is 8.5 and it needs to be above 8, my platelet count is 45,which is above my base of 40. My potassium is low which is expected due to some of the medicines, so they put it and magnesium in my liguid food through my Hickman. Dr. Peters visited today and said I was a good girl and very beautiful with my new "do"! He said we watch the trend of the White blood count daily and Mom ask for the copy of the readout so she can understand all the numbers and how they affect me. Dr. Peters also made a crack about my Cleveland Indians signs, so we must keep that coming. He doesn't know I know this, but we heard through the grapevine that he and Dr Mark have more than one thing in common -they both cheer for the wrong team!!
Mom and I thank everyone for the cards, letters, emails, prayers, and gifts! They do wonders to lift our spirits so far away from everyone we know and love. Mom is behind on her thank you notes, she begs me to help, glad my speliing isn't any good!
We received a very special, unique gift yesterday from Kay, Mom's friend she met in China when she adopted Mikaylah. She has a beautiful voice and she made a cassette tape of her singing and playing the guitar just for us. One side is melodious tunes that I can sing along with or just relax and mello out to. She even did her version of the BINGO song using my name and my new dog ALVIN. She even mentions Wyatt and Mikaylah in some of the songs. It made my Mom cry. When Mom listened to the other side, done especially for her, I thought I was going to have to call the DR. in here she got so emotional! Will I be that sentimental when I grow up?
Mom says we are truly blessed by the love and support we are receiving from family and friends and hope everyone realizes how very much it means to us.

Wednesday, June 13, 2001 at 09:44 PM (CDT)

I am feeling miserable most of the time right now as my energy level is low. My hemoglobin and platelets were low so they gave me blood and platelets yesterday. I don't eat or drink anything other than IV stuff (I did take one sip of ice cold Diet Pepsi tonight)as nothing really tickles my fancy.
Can 4 year olds have their days and nights mixed up? Between drugs and energy level, I slept alot yesterday aside from acouple vomiting and hive problems. At 7:30, Mom and I had just settled down for a long summer nap, when inside my tum there arose such a clatter and I jumped up from my bed to see what was the matter - sleep now was a vanishing thought and Mom started to look for the sleep aid she bought! We watched David and Conan before I could sleep, and Mom lay quietly in bed waiting for the pump to beep!!!
My Minneapolis Uncle Dave came today to give Mom a break, so she got our first roll of film taken here developed. Good Stuff!
Will send by snail mail!
Lillian came today too! We missed her!
I got out of bed and played in a car and blew bubbles with my friend Jim the bubble eater, who doubles for my ST.(Cathy, he's an adult, but her sure loves the glow in the dark bracelets!)
Then something happened and I had a violent reaction to some meds, since I get so many they have to be a detective to see what might have caused it. They changed three of my meds to try to find the answer.
Mom's friend Robyn from Maine, who has two girls like me, made in China, arrives on 6-15. We can't wait.
My hair has started to fall out by the handfuls now, it doesn't bother me much - just itchy, I can see it bothers Mom. They offered to shave my head, but Mom said not yet! I think she is afraid to let go of those beautiful red highlights that she first fell in love with long ago in China.

Tuesday, June 12, 2001 at 01:39 AM (CDT)

Nose feeding tube wasn't working to well anymore, as I continue to get queasy and throw up. I was so upset when I got sick on my brand new night shirt from Aunt Jeanie! So, they took it out today, I was afraid, but sure don't miss it! They are now feeding me TPN, food through IV. Non fattening, I hope!
I have a cough, so they did a chest xray, and it looked fine.
My platelets need to be 40k or more, or they have to give me some in my IV, mine dropped from 97k, to 50K, which is expected as my body is not yet making any.
Dr Peters came in today - we have missed him and his crazy ties, he is so busy working for us. He told Mom that she should expect me to be very tired these next days and have no appetite because my body has no immune system.
I got my BRA today. It is made by a Mom that had a child with the Hickman Cath, it is so cool. It is about four inches wide with a pocket in it for the hickman tubes to fit in once I am unhooked from all the pumps.
Mom put Cleveland Indians stickers on my hospital window and we heard acouple -"Go tribe" comments in the hall. One of the resident docs was born and raised there. I bet I will be her favorite patient now!
Lillian Zhang, Mom's friend from Boston, and the wonderful woman who made our adoption possible is coming to see us 6-13 through 6-17!! We can't wait!

Sunday, June 10, 2001 at 01:13 PM (CDT)

It's been a tough couple of days. I am pretty tired and have sores in my stomach and throat so they have stopped the through the nose feedings. That in combination with some of the meds make me throw up, so they will start TPN drip to keep vitamins and protiens going in. Was real restless yesterday afternoon and night until Mom got in bed with me and rubbed my tummy. It was crowded, but we managed all night.
Real food doesn't excite me, I did manage to eat some goldfish just now though. Dave Tucker helped me with my menu yesterday,(Mashed potatoes and bacon yum, but just couldn't eat it) while Krisite painted my hospital window with a butterfly, and Mom went for a walk with Jodi.
Weight was down to 12.6 kil. and platelets are 97

Saturday, June 09, 2001 at 02:29 AM (CDT)

I had to have what they call an ADD On yesterday, which is an additional bag of T cells. Nurse Kerry explained that the Tcells are the fighter cells, too many can cause graf vs host disease (GVH) while to few make the graf process more difficult. The exact count is based on years of research and testing.
Now we play the waiting game - my immune system is non-exsistent so I am very vulnerable for the next few weeks and must take all precautions against infection. The transplant is considered day 1, a white count will probably not be taken until at least day 7 to see if t cells are doing their job. It could take until at least day 21 to see white count going up.
They did discover from a test they did on Thursday that I have a bronchial fungal infection that they have immediately started to treat with additonal pre meds and prophalatic meds. I have to have a CAT scan tomorrow some time to check it out.
Meds make me sleepy, but not enough to keep me from noticing when Mom tries to slip back to Ronald McDOnalds for a shower...
Top Ten Things Mom Has Learned While I Am Hospitalized (Obviously she Still Can't Sleep)
10. Heath Bar Fiddle Faddle can make the Boston Red Sox Stickers look blurry!
9. Proper computer lighting can be a a GE pen light if that is all you have in the middle of the night in a VERY small hospital room.
8. A Luke warm shower feels better than no shower at all.
7. PB Ritz Bits and an ice cold diet Pepsi still make her smile.
6. She can make it 5 whole mornings without a Diet Dew
5. She needs to bring towels from home when using the hospital shower - using theirs is like drying yourself with a used cheap, paper towel
4. Clean underwear really doesn't matter.
3. Her next business trip she can eliminate a suitcase, because she is now accustomed to wearing the same exact clothes for sleep and day wear for at least 3 days a week.
2. That I am just as beautiful and lovable when I don't feel good as when I'm happy and healthy.
1. Nurses really DO deserve to make more money, especially the ones that shut off the IV pump in the middle of the night BEFORE it beeps!!!

Saturday, June 09, 2001 at 01:55 AM (CDT)

Unlike my Mom, I can sleep! And sleep I did, right through the transplant! Nurse Patti announced early arrival of marrow to my room at 12:45 am and it was infused by 1:26 am. Mom took pictures for you guys.
You know how Mom always says YOU can make a difference - well, the 46 year old man that gave marrow for me is the ultimate example of making a difference. Wherever you are Mr. Donor, whoever you are, thank you from the bottom of my heart and all of those that love me!

Friday, June 08, 2001 at 12:22 AM (CDT)

It was a better day today, which I see now is really yesterday. I wore my second bikini to radiation today and the doc hit on me! Do you think I look older than 4?
The nose thing "blows", but My hemoglobin jumped to 9.9. They are feeding me through it 12 hours a day, hope I don't get fat! It kind of grows on you, I guess.
Hives again, ATG med is done so not sure what that is about. Doc says they will keep an eye on it.
Got in trouble with my friend Wendy today, who knew you couldn't go for alittle bike ride right outside the door of my room - what's a girl supposed to do all cooped up all day!
Laura, the chaplin here, delivered a beautiful Blessings ceremony in preparation for the transplant. Wish you could have been here Doug...at least it wasn't raining here!
Still can't figure out how to get those pictures up on the web. Mom is sure one probelm is Windows 95.
Received a ton of ballons from my sweet Aunt Lillian, problem we didn't know you are not allowed to bring latex ballons in the hospital, soo, you know my Mom! She had Brandi take me to the hospital window, when I couldn't see her, she climbed up on the hospital van to release them in the sky for me to see. She is weak with lack of sleep, so she had to drag some man from the parking lot up with her to break them apart!
Did I remember to say - Way to go tribe?
Transplant won't be happening until approximately 2:00 am now on 6-8, Mom says I can't stay up that late...

Wednesday, June 06, 2001 at 11:11 PM (CDT)

Good, Bad and Ugly Day today.
Good - The guys in radiation thought I was "hot" in my bathing suit!
Good - Wendy from PT brought me a great puzzle and I did it very well.
Ugly - Hemoglobin went from 8.6 to 7.6 Dr. Mark, so had to get a unit of blood, and have the dreaded feeding tube put in my nose to send food to my tummy.
Bad - Hives again - More benedryl
Good - Jason from Child Family Life came back today with his buddy JR, (he was kinda a stuffed shirt) and patiently, in my language, explained to me how the feeding tube thing worked. I even got to practice with the doll doing what the docs would do to me. He did a super job, but I wasn't buying any of it,and begged Mom to take it out in recovery room. He visited me before
and gave me my very own doll with a Hickman cath in her chest like me. I call her Mikaylah and I love to practice cleaning and reapplying her dressing.
Good - I ate very good tonight!
Bad - I am still awake!
Great - Indians beat the Twins and the Red Soxs lost!
GREAT - After two years of trying to get our friend out of China (we call her Mary, but now we WILL learn to pronounce her Chinese name correctly)to stay with us, she got her VISA, thanks to a team of hardworking never say "no" folks! (Mom says,to tell her it can't be done only makes her more determined to prove it can!) Lyndow Lyon from Senator Olympia Snowes office in Maine, Ellen from Senator Voinivitch's office in Ohio, Kevin Raye, Chief of Staff, Senator Snowe in Washington and another Snowe staffer that we have to get a name check on!
Her arrival date is undetermined yet tonight!
God does answer prayer - pray for a cure for MLD!

Wednesday, June 06, 2001 at 12:55 AM (CDT)

Had a dose of radiation yesterday, but second dose was postponed until Thursday. Had reaction to one of the meds and broke out in itchy hives, so I got another medicine to counteract that. The good news is that since radiation was postponed, I could EAT! Eat I did, baked potato and chicken, but I fell asleep before my favorite watermellon for dessert.
My room was the place to be today as I had tons of visitors, PT,OT and bubble eating speech therapist.
Janet, our Socail worker came too! Care partners who had given me a delightful bag of goodies previously, came today to see Mom and tell her they had chosen two women to help support us through all of this. (Mom wonders if she needs that much help, or if she's just special!) We'll meet them soon. They are also going to bring a computor into my room so I can play games on it.
Mom can't sleep - I have hives again.
I took a bath in the shower tonight and Mom snuck over to the RMH to take a shower, she doesn't think I noticed, but I was real unhappy when I found out, sooo, tomorrow she promised I could wear my new bikini all day - won't I shock those guys in radiation at 7:00 am!
I also got an email from ALVIN's owners and they told me more great things about my mobility dog. They are happy I will be his new owner. They are going to send photos of his parents.

Monday, June 04, 2001 at 11:37 PM (CDT)

Early this a.m. I was sedated for first full body radiation treatment. Mom TOLD them she wouldn't leave me until I was completely asleep, so she had to get all fancied up in protective gear to come in with me. When I woke in recovery she was right there with me like she never left!
I didn't like any part of this procedure and vocally let everyone know it! I came back upstairs, still couldn't eat and they gave me a dose of ATG to prevent or treat graf vs host disease. I immediately let them know that wasn't my cup of tea either, by giving it right back to them. Then I astarted with chills that made my little body shake all over. Demerol helped that, so after a brief rest, I went back down for second treatment. I was really unhappy after that! To top it off,I have to wear my mask now whenever I leave the room as protection against germs, and I don't much like that either! Dr. Mark said this was going to be a difficult week - he's pretty smart for a RED Sox Fan!
I am feeling real lousy, and haven't eaten anything. The good news, I did get three sips of soda down, and it isn't even Friday. (SODA DAY)
Mom just came back from Ronald McDonald House,(I din't even know she left) and took my picture for this page - if she can figure out how to put it out there. She also brought the mail back which is normally a happy time for me...Cards from Jeanie and Dick, Martha, Bruce and MAribelle, and packages from that awesome Adrienne, Joanne Archbault, and Diann Euele's friend we met in Mass. at first year reunion Anni. (Thank you all)
Tomorrow is a carbon copy of today unfortunately, except we get to sleep until 8:00 a.m.
Mom tells me a kereoke machine is coming for us tomorrow - hope I fell like singing?!
Give those Indians a pep talk - it's painful enough in here!!
How did you like my new puppy?

Monday, June 04, 2001 at 01:12 PM (CDT)

Go see a picture of my future mobility dog Alvin in the photo gallery!

Sunday, June 03, 2001 at 10:53 AM (CDT)

Chemo is done! Hip! Hip! Hooray!
I got sick today from antifungal med. Mom and I were up every two hours in the night so I could tinkle and get every bit of the chemo drug out of my system as it is very dangerous for my little kidneys. Mom looks tired, but I am my same beautiful self. WE put our Irish music on and I danced with Mom on the bed!
I had my first visitors yesterday and it was wonderful! They really did "light up my life"! Dave, Jodi Tucker friends of Mom's from GE Lighting and their kids, my buddies, Krisite and Andrew. Andrew painted a dragon on my hospital window, and Kristie played with me and the colorforms she brought me!
Mom and I decorated my room last night with pictures from daycare, glow in the dark stuff, angel mobile from Bev, a picture from Joe and Nina in Massachusettes, and GE teddy bear lights from the Damato's. It looks marvelous!
I got great news yesterday from 4Paws about my mobility dog! He is a beautiful, gentle, brilliant(just like me) German Shepard named Alvin like the chipmunk. As soon as we raise the money, he will be trained to help me do things when I get home. As soon as Mom learns how, she will put a link to the website where you can see him for yourself - oh, where is Wyatt when you need him!
We got a boxes full of goodies from Adrienne, Molly, Abbie, and Hannah last week, and got a box full of my favorite Chinese sweets from Diann, Joe, Mike, and Nina from New England as well. Mom said it was the first time she was happy to see the Boston Red Sox in her life! (Their box was decorated with Sox stickers, we know they wanted to put Indians stickers on it, just couldn't find any!!)

Friday, June 01, 2001 at 01:25 AM (CDT)

This page has just been created. Please check back for additional updates.
Thursday I was sedated most of the day as I had an MRI, Spinal Tap, Bronchial tube insertion, molding of face mask for protection of brain during full body
radiation, insertion of of the Hickman catheter in chest and neck for further IV's,(chemo, transplant, blood, and meds) She had her first dose of cytoxian, (chemo) Friday, last on Saturday. I was tired,and not very hungary even for my favorite foods.

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