History

Saturday, March 31, 2012 10:34 AM CDT

It's been awhile, but all is well. Maya has been busy enjoying some of the (much more) mild weather, but sunny days. I never thought I'd think 48 degrees and sunny was a perfect day for the park, but it really was. She really enjoys playing when there aren't many kids at the playground as she tends to have an easier time navigating thing then.

We are in the midst of preparing for a weekend in Kentucky at the Camp for Courageous Kids and then spending some time with my parents in Tennessee at their home. It takes a lot of prep just to pack supplies and organize shipping and delivery of IV meds and oxygen for a trip, but always worth it. Thankfully Maya rides well too as we will have about an eleven hour drive both ways :)

We've had a nice couple weeks medically and have enjoyed only having speech therapy, labs, and one MD appt the past two weeks! After a few hectic weeks it's always welcome.

Thanks for checking on us!

Holly

Monday, March 12, 2012 10:18 AM CDT

Not sure there is much activity here these days, but I wanted to take a moment to say Happy Gotcha Day to my amazing girl. Eleven years ago she was placed in my arms that late March evening at the Indianapolis airport. She was tiny, wide-eyed, and silent. Up until that moment I had no idea I had the capacity to love anyone that much. There has been no looking back. She has blossomed into a beautiful, funny, vibrant, engaging young lady and I love her more and more each day. No matter what trails we face or challenges that are ahead of us we face each day together. I'm so blessed to have been chosen by her and chosen by God to be her momma.

Friday, March 2, 2012 11:12 AM CST

We are finally home and hopefully for awhile this time.

Maya did great with her tonsil surgery and recovery only to come home for a day and a half and spike a temp of 105 and earn herself a trip to the ER and subsequent ICU stay. We are home now and finishing a 21-day course of multiple IV antibiotics. They are compatible with TPN so we are doing pretty well keeping up with things at home since it doesn't rearrange her schedule too much.

Maya's glad to be home, but as expected, tired and a bit out of her routine. We had a good week (home Sunday night). Next week is another story. I think we are at Children's 4/5 days and the "free" day we are at another clinic :) Things are good though and we have a bit of fun planned for a few of the days as we go from here to there.

Sunday we are enjoying one of our Christmas gifts and heading into Milwaukee to see Mary Poppins on stage. We are both excited and can't wait to enjoy the show. Hoping the snow storm predicted for tonight has things under control by Sunday morning.

Sorry for the lack of updates, but life hasn't been too exciting for us lately.

Holly

Thursday, February 16, 2012 8:40 PM CST

What a whirlwind of a week. Maya had a reaction to one of the meds she was given and it was a rough couple of days, but today we've gotten her back on track and things are going well.

Tomorrow is the big day. She is on the schedule for 2:45 and will first have her urology proceedure done and then her T&A. She "gets" to be last case since she's not fasting (on TPN), inpatient, and most of all because she has anesthesia precautions and they have to use a machine specially prepared to do her anesthesia.

I'll try to update as soon as things are over, but it might be later in the evening depending how much time I have.

Thanks for checking in!

Holly

Friday, February 10, 2012 3:29 PM CST

We are getting ready for Maya's admission next week. She will be admitted For hopefully just a week. The first 3 days she will be getting her infusion for osteoporosis. For various reasons her bone health is pretty poor, we are at the point our best option now is to do these infusions to improve her bone density. The tricky part is that she already has issues with her calcium balance so she will need frequent labs throughout those days to make sure the infusion doesn't tip the scales of that balance. After her infusions are complete she is having surgery then hopefully after a couple of days can continue her recovery at home.

Maya has had a difficult week so hopefully this admission will be our first step towards improving and getting her back on track.

Maya has been working hard doing her schoolwork and each week takes her spelling words and writes them into a letter to someone. Several weeks ago she wrote Ariel and was so excited this week to receive a letter back from Disney signed by all the princesses!

I'll update from the hospital next week as we go through our stay.

Holly

Monday, January 9, 2012 8:04 AM CST

I didn't realize it's been so long since I updated. It's been crazy here and I have a computer that is on it's last legs so getting on here and typing is anything but easy :) I'm hoping it can maybe last a bit longer as I decide what I'm going to do since I can't imagine being computerless for very long. It'll work out though, things always do.

Maya's been doing OK. She's had a rather long outbreak of her sores she gets, but after another week of IV antibioitcs those seem to be under control. Basically her immune system is confused and sometimes will fight itself which is a whole different set of issues including these sores which are painful and itchy.

Maya's headaches are back so we are working on something to help with those and we'll also see dermatology this week and do a follow up ultrasound since her liver numbers have been really high the past month.

That's about it around here. We've not really been doing much non-medical other than school and cleaning up post Christmas, finally got our tree down and things put away for the year.

HOlly

Saturday, December 31, 2011 8:29 PM CST

I'm a few hours early for my first post of 2012, but I'm spending the evening looking back at 2011 and looking forward to 2012. We've had a good year. We are both very blessed by the people in our lives and the team of medical people involved in Maya's care.

We just had a wonderful week of visiting with my sister (Auntie Jessy) and were sad to see her go this morning, but it was a wonderful visit and we are already looking forward to the next.

Jessy learned our weeks are typically not as planned and we ended up throwing in some impromptu doctor appointments, labs, and an ultrasound. She even got the emergency room experience with Maya. So now we have 2 weeks of antibiotics to complete and hopefully we'll be back on track so we can coem up with some fun to get into before Maya's surgery in February.

Thanks to everyone who still visits here for continuing to support us.

Saturday, December 24, 2011 8:29 PM CST

Tucked into bed and ready to dream of sugarplums... that's my girl. She's thrilled and excited Santa is coming tonight, but as you can see from her note she's not forgotten the true reason for the season.

We spent today playing games, doing puzzles and watching Christmas movies. We miss being close to family and spending the day with them so it's was bittersweet on my part, but Maya had a really good day. We are walking the line with some medical issues, but nothing we don't feel like we can ride out at home at least for the time being. I'm thankful our doctor and our pharmacist are the ones on call this weekend. It's added comfort when staying home to know we are just a phone call away from what we need. Unfortunately because of these issues we had to change our plans for Christmas day with some friends we were looking forward to seeing. Hoping we can catch up with them early in the new year.

We wish all of you who come here and support us a joyous Christmas! We are so thankful for each of you in our lives however you are a part of them. Short note tonight as I must get to my Santa duties :) Can't wait to see her face in the morning when she sees the one thing she has asked for 100x.... oddly enough, it's a humidifier shaped like a penguin! Gotta love her.

Saturday, December 17, 2011 8:06 AM CST

Sorry for the delay, we've been in the midst of celebrations here. Last Monday Maya turned 13! She is thrilled to tell people that she's now a teenager. The extra bonus was that my parents came for a visit on her birthday and were able to stay for a few days. They left yesterday just in time since we woke up to snow today.

Maya had a great birthday and we enjoyed celebrating Christmas with Nana and Papa while they were here. Maya really enjoyed having their dog Charlie here for the week with them too. Pookie on the other hand, wasn't so sure he thought that was such a great idea, but he's pretty good and just has no use for dogs so Charlie spent a lot of time trying to avoid him :)

This week we are pretty buys as we try to finish some appointments before the holidays so we can take another week off from appointments for a visit from my sister. We are trying to coordinate a few doctors seeing Maya before her surgery in February. We've had some recent issues with her needing night-time oxygen and also some immune issues that we are sorting out and trying to find a way to treat with the least amount of side effects.

Thanks for continuing to check in on us.

Holly

Thursday, December 8, 2011 3:05 PM CST

Wow... we are still here, really.

We've had a couple of marathon weeks with appointments and changes in regards to Maya's treatment and needs. Things are slowing now and I'm hoping can stay slow through the holidays when we are planning on having visitors and just being a "normal" family.

Maya did go visit Santa this week and thankfully no one was in line behind us because she had a LOT to say. Not just her list either. She had something to say about everything.

Rest of our week is not so busy and then nana and papa will be here Monday for a few days. We are both looking forward to that.

Thanks for checking on us!

Holly

Thursday, November 24, 2011 9:02 AM CST

Happy Thanksgiving!

I am so thankful for another year with my daughter. Another year to make memories, and another year of her anticipating her birthday and Christ's birth. This has been our 10th year together. The 10 best years of my life.

I'm thankful for family that although we can't be together are the building block of who I am and always there for me no matter what. I'm thankful for a new niece that after a bumpy first week is doing well and thriving at home where she belongs.

I'm thankful for a place to live that is warm and dry and food to eat.

I'm thankful for the medical technology that allows my daughter to "feast" each day through IV nutrition and not slowly starve from lack of nutrition. For the interventions that allow her to live at home and not in a hospital.

I'm thankful that God has always been there looking out for us. That although the paths aren't always clear and smooth they've been carefully laid out and we are never alone. I'm thankful I've taken the time to listen (most of the time!) to what he's asked of me and I'm where I am today. It's not the journey I thought I was started on 20 years ago, but it's the journey I'm meant to be on.

Thanks to all of you who still come here to check on my girl. We are blessed to be surrounded by a supportive group of people who love us as much as we do them.

Happy Thanksgiving!

Friday, November 11, 2011 6:50 AM CST

We are heading home!

Maya's at a point now we can do this at home and have the confidence we'll be there for more than a day or two. Things look pretty stable with her labs so we won't have to do them this weekend. We'll check things again Monday to make sure she is headed in the right direction and make changes from there. Right now we are doing additional antibiotics and she is needing some extra oxygen, but nothing too big and nothing we can't handle at home.

We have a few questions remaining about why she's having some issues she is so we'll sort those out when we get home and follow up with a few doctors over the next couple of weeks.

So today comes the big job of her discharge which is no small feat with coordinating supplies and everything that needs to go home. Unfortunately laying low next week isn't on the agenda as we have to come back here several times, but knowing we'll spend each night in our own beds will make it worth it.

I'm also sure Pookie will be glad to have us back home! He always misses her very much.

Holly

Wednesday, November 9, 2011 6:35 AM CST

Sorry I've not updated. I'm actually not sure if this page is visited much. I know it's been years since it was started and with little change I'm just not sure how much "following" happens and I totally get that. Not much changes with time.

Anyhow, if you've happened by we are still in the hospital. Maya's had a couple issues post op with fevers. We aren't sure why, but they are there and we've had to chase them. There was talk of escape today so we'll see. She spiked a temp last night so it's hard to know if they'll take the chance and send her home or if they will want to keep her another day.

We are weary and ready to go. Need our own beds and our own comforts of home.

Friday, November 4, 2011 10:26 PM CDT

Surgery went well. Not sure if this is going to take care of the problem as there were some changes made, but hopefully this will do it.

Maya came back with a lot of pain so we are hoping to get that under control over the next day or two and then hopefully back home. She's been sleeping on and off since she got back to the room, waking only for pain medication.

She was able to meet with her teacher this morning and do school before her surgery. That's always the highlight of her hospital stay so she was happy to see her walk in this morning.

Hoping for an uneventful night tonight then seeing what tomorrow brings.

Thursday, November 3, 2011 7:46 PM CDT

We are all settled in and unpacked. Maya's in W518 and very content visiting and playing. Tomorrow is the big day with surgery scheduled for around noon.

We had a quick stop at Build-a-Bear on our way in as Maya had gift cards left from last Christmas and they sent out a flier yesterday with a new penguin from Happy Feet 2 on it. She built a penguin and Waddles got a new shirt and hat :)

No other news here, just the way we like it.

Sunday, October 30, 2011 8:57 PM CDT

We spent yesterday at the zoo enjoying Trick-or-Treat with the animals :)

All of the animals had gotten treats of pumpkins and Maya enjoyed watching them play. There were also trick-or-treat stations for the kids which she of course enjoyed too, although not as much as when it came time for her to turn in her candy for prizes since she doesn't eat. The leaves were beautiful to and although it was a bit brisk it was still a beautiful fall day and at least not so cold we needed our winter coats. I'll put some pictures under photo tab also.

We have a busy week with therapy and doctor appointments then Thursday morning we head into Club Med. Right now her surgery is scheduled for Friday. I'm not sure how long we'll be in, but we are hoping to be home by the end of next week. I'm praying at this point she's healthy enough for the surgery as she had a rough day today. I'm not sure if she's getting sick or if she's just having symptoms related to her gut issues we are playing to fix with surgery on Friday. Hopefully she can hold out and we can go ahead as planned.

Will be sure to update once we get settled on Thursday. Thanks for checking in.

Holly

Thursday, October 27, 2011 7:51 AM CDT

Sorry for the delay. Things are going well and we've been caught up in the fall festivities. I don't have time right now to upload and code pictures on here, but Saturday we participated in a family fun time with Zachariah's Acres which is a new respite facility/property opening near here for family respite. We had a great time there and then came home and did the downtown Delafield Trick-o-Treat which was great. I'll come back and add pictures, but we are off to speech this morning and then hopefully slow down a bit after a busy week. Saturday we'll head to the zoo for their fall fun and then start packing for Maya's hospital stay/surgery next week.

Thursday Maya will be admitted for a surgery on Friday. The plan is to attempt to move her J-tube downstream and totally revise the site this time. Praying it will help and be a solution to the past 3 months of a very uncooperative tube/site.

Thanks for checking on us.

Holly

Wednesday, October 19, 2011 7:08 PM CDT

We went to the pumpkin patch on Monday and I'm so glad we did as winter seems to be upon us now and it was so sunny and nice on Monday. Brisk, but nice. Maya's also not felt well since she went so I'm glad we went while she was well although I suspect the time we spent out and active may have contributed to her not feeling well now. She was up without her wheelchair for over an hour and wearing her TPN (with help). She had such an awesome time though and she'll tell you it was totally worth it!

The rest of our weeks been busy, but had it's high points too. Tuesday she had speech and then we were able to visit with some friends from LaCrosse for a couple of ours. Always good for the soul to visit with friends, especially when those visits are few and far between.

Today was spent at CHW for a scan, labs, and x-ray, and a neurology appt. Then we rushed home for music therapy and Maya's been in bed since 4pm and tucked in for the night at this point. Whew... looking forward to just speech and some down time tomorrow then we are having field trip friday with some friends and going to the children's museum then a quick recoup and out for more fall fun on Saturday with a new facility opening up in the area. I'll post more about that once I have more details. Very excited though.

I guess that's about it here. At some point I need to take our van back in to be worked on which will leave us without a vehicle for a few days, but since this seems to be a monthly occurence trying to keep it running we are getting pretty good at it!

Hope you've all had a good week and thanks for checking in!

Holly

Monday, October 10, 2011 7:16 PM CDT

We had a great time in Tennessee and made it home last night. Such a long drive, but well worth it. Maya really enjoyed just hanging out in Nana and Papa's back yard and finding stones in the stream.

We also were able to pick out some pumpkins (actually gourds, but it's what she considers pumpkin picking). As you can see Papa is as goofy as Maya :)

Papa and Maya washed the van and we were able to take a walk across the river on this bridge. Maya LOVES bridges.

So, it was a fun trip... too short as always, but nice. We jumped right back into things then this morning with a trip to the surgeon to see if we can find a way to correct her J-tube. Tomorrow we'll be back to speech therapy and then Wednesday labs again and to the pediatrician. Somewhere in there we'll squeeze in music and another speech therapy session. Yep, I'm ready for the weekend already!

Thanks for checking in on us!

Monday, October 3, 2011 6:33 PM CDT

I can't believe it's already October. The weather has been beautiful and we've really enjoyed the trees starting to show their color. We've spent this week studying the changes and why the leaves change colors and what makes different leaves turn different colors. I'll admit, I've learned quite a bit! Maya takes it in stride and never forgets anything. We've also been learning money values and how to apply this in real life. I'm hoping as we continue to work on this skill we can put it into play as we enter the holiday season and she has an opportunity to go shopping.

Medically things have been so-so. She's getting use to wearing oxygen and tolerates it pretty well. We are fortunate she only needs to wear it to bed right now. Lab wise her liver appears pretty unhappy and we aren't sure why. Well hopefully get some answers the week of the 10th as she'll see the doctor then. This week we are headed for some fun and leaving for Tennessee in the AM to see Nana and Papa before jumping into a hectic month.

Not too much else this week, thanks for checking in!

Holly

Monday, October 3, 2011 6:33 PM CDT

Friday, September 23, 2011 2:14 PM CDT

We had a busy week. Maya had to get labs checked a few times since her liver numbers continue to climb. We'll keep an eye on them for now unless she becomes symptomatic.

We were able to make a couple brief visits to a local butterfly habitat where monarchs stop off on their migratory journey south. Each time we went there were more and more butterflies. We are hoping to stop by again on Monday and see if there are even more. It's pretty close to the hospital which is nice too.

Overall, Maya is feeling well. She finished up her antibiotics this morning so keeping fingers crossed this infection won't return.

Holly

Tuesday, September 13, 2011 11:38 AM CDT

We are home. Lots to do right now with multiple antibiotics and helping support her through her recovery. We follow up tomorrow to decide where to go from here with things and until then are getting unpacked, repacked, and things back in order here at home. (by repacked I mean my suitcase that sits in the front closet fully packed and ready to go... not that I plan on using it for awhile).

Thanks for all the support during our last stay.

Holly

Sunday, September 11, 2011 11:19 PM CDT

We had a nice quiet day today. Hoping to see the surgeons early tomorrow so hopefully we can discuss how long she will need antibiotics and then get out here. We can easily do antibiotics at home. To clarify, although it is surgery who oversees her tubes, it does not mean she will need surgery on the tube or site.

Holly

Saturday, September 10, 2011 8:30 AM CDT

Sorry for no update yesterday. I kept waiting for the right time and that never came I guess. Anyhow.... We finally both got some sleep after two nights of very little sleep.

This morning she looks much better than she has been. They were able to wean her off her epi and nor epi and she is off her oxygen most of the time. She still needs it when she sleeps, but holds her own awake although still not at her baseline. She took a pretty good hit so it may just take time or it may just be where we are at this point in her journey. Not all that uncommon in mito kids to need some oxygen overnight.

Her j tube is in bad shape right now. Surgery will be by Monday to see what our next step will be in regards to this. Right now home isn't being talked about. We only have nursing once this week so going home on this volume of antibiotics will be a challenge. We,ve done it before though so well do it again..

Thanks for all the wonderful notes. It's always good to come here and read your notes of support.

Holly

Saturday, September 10, 2011 8:30 AM CDT

Thursday, September 8, 2011 10:16 AM CDT

She's awake and watching tv this morning. Things are improving although she is still requiring epi and norepi for support. Fevers are down and after getting a couple units of blood her heart rate is improving also. She is very puffy and fals asleep frequently but she needs her rest so that's a good thing too. Plan today is to work on weaning her drips, take her off her oxygen and hopefully figure out what bug we are dealing with. Right now we just know it's gram negative. Hopefully today's cultures will be clear too, but well see. It may be too soon.

Wednesday, September 7, 2011 11:14 PM CDT

Maya is in the PICU. She's getting blood as I type this and her blood pressures are pretty low, but the blood should help that. She's very puffy and her labs aren't too hot right now either. Thankfully she's comfortable. Right now she is on oxygen and epi along with multiple fluids and her meds and antibiotics. We are checking labs every couple of hours and adjusting accordingly. Hoping she sleeps tonight and that helps improve things. We arent sure at this point, but thinking she's septic. I'll update tomorrow after rounds. Thanks for checking in on us.

Wednesday, September 7, 2011 10:37 AM CDT

Maya's really not feeling well. Her eyes are red and she's had headaches since Sunday. I'm not sure what's going on so we are going in to see her pediatrician this afternoon. I'm hoping it's sinus/allergy stuff. She just finished 10 days of IV antibiotics for a sinus infection about a week and a half ago, but she sounds congested and her face is puffy on the right side. It would be an easy answer. She's had a sore throat too for a few weeks, but it seems to be a minor inconvenience to her more than anything (I suppose that is one benefit of not eating orally-sore throat doesn't slow you down and you stay hydrated).

She did make it to speech yesterday and we made a quick trip to Target which is her favorite place to go. Today she was suppose to have music, but it happens to be the same time as her doctor appointment so that's not going to happen and I'm not brave enough to break the news to her since it's the highlight of her week.

We are still eagerly anticipating fall and all that comes with it. The weather has gotten much cooler this week and our air conditioner is off for the first time since May I think! She doesn't do well with heat so it's rare if ever in the summer the air can be turned off. As cold as the nights get I anticipate the heat will be needed in a month or so. I'm not a fan of turning the heat on so I try to hold out until November or December. Always worked in Holmen, but our apartment here stays much colder and gets cold quickly. Not sure if it's the three outside walls or what, but to tell you how cold it is... in the winter we have electric blankets going full time (including an extra in case we have company)

I'll update once I know what the doctor has to say and will try to put some pictures on then too.

Thanks for checking in!

Holly

Sunday, September 4, 2011 11:42 AM CDT

Maya's not feeling well this weekend. Her J-tube is leaking pretty bad and is pretty painful at times. We are spending today on the couch watching Little House on the Prairie. It's always fun to share in her discovery of new things. Besides, it give us a chance to slow down and snuggle on the couch when she isn't feeling well.

Yesterday we took our weekly walk up to the farmer's market. Maya loves to go and see all the colors and feel the textures of the fruits and veggies. We like to look at all the things people have made too. Maya loves all the beading the most so we spend a lot of time looking at the jewelry :) She loves her jewelry. (in case you haven't noticed the amount of bracelets she wears in her pictures!)

We are full on into our school for this year and it's been fun re-exploring and teaching new things. Maya really enjoys learning and it's fun to find new ways to help her learn. This year we've been using the IPad as one way to work on different concepts and it's been wonderful for her. With some of her issues traditional learning is difficult and on top her her learning issues she gets fatigued with a lot of the fine motor work so this has been the perfect tool.

Maya and I are both looking forward to fall and all that comes with it. Already we are seeing hints of change in the trees and weather.

Thanks for continuing on our journey!

Holly

Monday, August 29, 2011 7:20 AM CDT

(I know, 4 posts in a week.... don't fall over!)

A few days ago we headed to one of our favorite spots...

Maya's secret gardens.....

It was like we were meant to visit. Maya LOVES it there and the butterflies were everywhere. The gardens were beautiful and other than there being a lot of bees it was a perfect day to be there. The bees kept themselves occupied with the flowers so we didn't really worry about them, just had to keep Maya from sniffing the flowers since she's got a bee allergy and we didn't want to disturb them.

After the gardens we found a nice shady spot to put our blanket and we read through a stack of books and played a game and basically just enjoyed the beautiful day.

As were were about to leave the garden we walked past a little stream that runs to the river. Apparently it was calling Maya's name because she spent about an hour playing and I spent the same hour making sure she didn't become "one with the river" as she was losing herself in the joy of splashing!

I just had to share.... she's so full of joy. Simple things create joy. I need to take a lesson from her. Saturday we walked up to the farmers market and took a walk along the river here in town. She had a smile and a giggle for everyone we passed. She loves the color and the smells of the farmer's market and has to feel and name all the new and wonderful fruits and veggies we find. There was a band playing along the river too and some training by the boys from the local military school taking place in the river so we watched... listened. She soaks all of life in. Amazing.

Thanks for sharing our journey.

Holly

Friday, August 26, 2011 6:32 PM CDT

Maya did well today. We got to the hospital early and things were not ready for us so after sitting there for over an hour (not quite sure why I had to get up at 4:30 just to sit there, but anyway....). They took her back to the OR and were able to replace the tube. The balloon was trapped in tract and not down in the intestine where it belonged. Once it was in place she woke up and the change in her level of pain was dramatic. So good to see her having some comfort with the tube again and all the drainage from the stoma stopped too. We were able to come home this afternoon and Maya and I were very happy to get out of there.

Hopefully now we can settle in for a nice, low-key weekend.

Thanks for all the well wishes.

Holly

Thursday, August 25, 2011 10:37 PM CDT

Maya's J tube quit working Tuesday night. It was really painful to flush and didn't seem to vent correctly. I talked with her pediatrician on Wednesday and they were able to get her in to see the surgeon today. After looking at the site and not being able to manipulate the tube enough to either replace it or assess the site he decided she'd need to go to the OR and try and figure out what was going on and replace the tube so that's where we are headed bright and early tomorrow.

The plan is an AM admit to the ICU and then recover in the ICU and then home tomorrow. With the amount of home meds and some of the medications she needs she is not allowed to go through day surgery. This makes things more difficult then they really need to be, but a lot of things are that way :)

So, I hope to be updating again from home tomorrow night with news all went well and she is settled in comfortably. Right now the pain is pretty significant even with her PCA.

Thanks for checking in.

Holly

Monday, August 22, 2011 7:32 AM CDT

Several weeks ago my brother, niece, and sister-in-law came to visit. With them they brought something I'd semi-forgotten was in process, but was thrilled to finally receive.

This is the quilt made by my SIL's mom. It is a combination of some of my favorite outfits Maya had the first couple of years she was with me. Many of the squares contain the little pictures, pockets, or other accessories that went with the outfit and it's all sewn into this beautiful quilt. It's something that I'll cherish forever and looking at it floods back so many memories. It was fun to unfold it with maya when I put her to bed that night and tell her stories and let her see the different fabrics. I'm trying to find the perfect way to display it now and working on collecting some pictures of her in these different outfits to display with the quilt.

I'm trying to get a better picture with it and one with Maya and the quilt too. If I manage I'll post it as each square is such a special addition and some of you long-time readers may even recognize a few things.

On a medical front, all is well. We had a bunch of extra labs and a few doctor appointments last week, but nothing major and no changes until we get some of these labs back (some of them are the ones that will take over a month to come back). Hoping for a relatively slow week since Maya is not up to full speed right now. Seems energy depleted for some reason. Happy though and was up and ready to go at 3am! :) That's my girl!

Holly

Sunday, August 14, 2011 10:26 AM CDT

We had a good week. It went by pretty quickly which is often a sign things are going well and we are busy. Last weeks labs were pretty "good for her" meaning they aren't normal, but they are where she tends to sit and that's a good thing. We honestly worry more when all her labs are actually normal by lab standards since that is not normal for her :)

Speech therapy is going really well. We are really turning our focus to some new goals with her processing and handling new situations. They are all part of what we've always worked on, but since she really doesn't have any articulation issues or difficultly with saying the words themselves we have to look at the picture differently (and have for the past several years). It's been fun to see her blossom from the little girl who didn't even talk until she was four to this young lady who I can't seem to STOP from talking. She's amazing really, but some days I long for less talking :) Some of her neurosphych issues really affect her speech in that she likes to echo everything and she's very OCD so if you ask her a question she can give you a 5 minute description of the something and never quite tell you the answer. I typically know where she's going with something and often feel like I'm her interpreter. We are using some technology now to help her with some of these speech issues and it will be fun to see where it takes her.

Friday was her Music Celebration for music therapy. I wish I had video of her song, but it's always difficult to juggle her and a camera. She did a beautiful job. I'll try to get her to do it and just make a video of her at home so we can share. She signed the song, "Candle on the Water" from Pete's Dragon. She also enjoyed watching the other kids and adults who shared their music too. It's such an amazing thing to watch as all of the participants have their own challenges and have the amazing opportunity as we do to participate in music therapy. It really in the highlight of Maya's week and the one thing she looks forward to no matter what.

Maya got a couple packages in the mail this week of buttons. I found a mini muffin tin and she spends hours figuring out different ways to sort them. I also have some fabric squares of different fabrics and she does the same with these and loves all the textures and colors. A big thanks to our button fairy for coming up with this fun idea!

I think that covers our week. This week is busier with medical stuff with 2 doctor appointments on Wednesday, I need to give her IVIG Tuesday, and she has labs, speech, and music each two times this week. Whew, I'm ready for the weekend already!

Thanks for checking in on us and I'll work on the video upload after I record her signing. We are also preparing to jump into school a little deeper. We don't really take the summer off although we back off considerably. Summer reading at the library is over though so we need to get back in the groove.

Holly

Saturday, August 6, 2011 3:26 PM CDT

Wow, what a long week. Maya wasn't well most of the week with odd looking labs, pain, and just generally not herself. Monday we made 2 trips to Children's and one to the pediatrician and really other than knowing things just weren't right we couldn't come up with an answer to what was going on. Closest we can come up with based on her symptoms and labs is a biliary obstruction which we've seen before. We just took the week day by day adjusting as needed and keeping track of her labs. We'll check again Monday and see where things stand. I think we are on the upswing and will improve from here, but time will tell. This "bump" has put our trip to LaCrosse on hold for now. Her doctor feels it's not the best time to take her since she's not feeling well and since we don't actually know the cause of what is going on. It's always a challenge to decide when to push forward with "life" and when to be cautious, but since this is something we can easily reschedule we want her to go safely and be at her best so she can get all her visiting in that she has planned. I tried to email each of you who had said you wanted to get together and let you know where things stand.

On a brighter note, we headed to the library (which is literally across the street from us) on Wednesday for their end of the year carnival. It wasn't really very accessible, but she was able to do a couple of games and we came home and made up a few more of our own so she didn't feel like she really missed out on much. Friday we also were able to have music therapy after a week of no speech or music due to her not feeling well.

Today she's resting on the couch watching a movie with Waddles and Miss Piggy :) Speaking of Miss Piggy she was very excited to hear there is a new muppet movie coming out in November.

Thats about it here, hoping for a boring week and our usual routine to return. Labs will be Monday and we'll decide from there if we need to look further into what's been going on. No fevers in a few days though so I'm not anticipating anything real exciting. I'll try and upload some new pics this week too. Oops! I almost forgot, the highlight of Maya's week will be her music celebration on Friday for music therapy. She's practiced and practiced her song and we can't wait to share it!

Holly

Sunday, July 31, 2011 3:14 PM CDT

We had a great, fun-filled weekend with family. My brother and his family came for a visit and we packed in all the fun we could fit.

On Friday we met up with them at their hotel and headed to the zoo for the afternoon. We had a great time and the animals were really active which always makes it a fun time. I didn't get too many pictures, but this fun one of the bears who were having a great time.

Saturday we headed down to Discovery World to explore. It was a lot of fun and the girls had a great time learning.

Today the girls were able to do a craft together and then we had to say goodbye. Always hard to say goodbye.

Thursday, July 28, 2011 9:26 PM CDT

So happy the week is drawing to a close. It's been pretty much non-stop all week and I'm ready for a break. We are excited to since my brother and his family are coming for the weekend so it will be more of a mental break than a physical one since we are hoping to take them to some of our favorite places.

Monday Maya had her annual hearing test. She's never had any hearing in her right ear so we try and monitor the left fairly closely so we can pick up on problems should they occur. She has lost a bit more hearing on the left side, but mostly in high frequency and because of the hearing absence in her left hear the type of hearing aide she would need is pretty complicated and would involve surgery so we'll recheck in a year and adapt as needed until then. If she were to continue to lose hearing in her good hear we'll revisit treatment then.

Tuesday was our big day. Maya had a genetics appointment with a new doctor and several issues were discussed and a lot of testing that wasn't around 5 years ago when we last explored some of her issues is now available so we are pursuing looking further into what might be the cause of some of her scattered issues. The theory is we are dealing with more than just one process (disease, syndrome, whatever you want to call them). Time will tell and most likely it won't change much if anything we are doing, but being aware genetically where we stand does open doors to future treatments as they become available.

I also met with another mom and talked for awhile. That's always something that I enjoy and although we have wonderful friends and family supporting us taking with another mom who faces similar challenges of caring for their child and frequent hospital stays is always nice.

Today we saw the pediatrician and made some TPN changes and ordered some extra labs to draw next week. We've seen some changes this past month we need to further investigate including rapid weight gain and some lab changes. We were also able to review some of the studies we had done during our last admission.

So... for the real fun and the highlight of Maya's week. Wednesday we went to a magic show at the library and Maya LOVED it. She was chosen to go on stage and be part of one of the illusions and she was in her glory. She laughed and cheered as she wanted the entire act so it was well worth the time and energy it took to get there. Next week is the end of the summer carnival for the summer reading program and she's really looking forward to that too.

Thanks for checking on us. For those of you in LaCrosse we are planning on being in town the 9th and 10th. We are hoping to at least get to say Hi to everyone and visit. If you are interested let me know so we don't miss anyone. Maya is so excited to come visit! We are hoping to hit some of her favorite places while we are there too.

Wendy: I tried to email you last week for your birthday and it got returned. I don't have your current email. Can you send it to me?

Holly

Thursday, July 21, 2011 9:30 PM CDT

Ok, it's been more than a day or two, but it took some time to sort things out and then deal with the heat on top of it. I can't really complain about the heat since we are fortunate enough to have an air conditioner in the living room and it keeps us nice and cool.

Our week was busy with a few sets of labs watching her electrolytes which didn't seem to want to cooperate. We checked them today and now get to wait until Monday! Making progress.

Our hospital stay went well. We were able to get a couple of units of blood in her which improved her heart rate, color, and overall energy level. The EEG showed some generalized seizure activity so we may need to make some changes to her medications. We know anything we give enterally (through her J-tube) doesn't seem to absorb or give the same effect as IV so since currently one med is IV and one is enterally I'm not sure what the plan will be.

She also had a renal u/s which showed what we knew, she is still making stones and at this point there isn't much we can do. Thankfully she gets over 4 liters of fluid a day and we are able to keep things flushed through pretty good. She's already on meds to help with her calcium output and we've basically at this point tried what we can.

Tuesday was my birthday. Maya had my day planned and it included a trip to the movies and although she told me we had to see Cars II when we got there she decided she'd take me to The ZooKeeper. We also went out for French Fries, chocolate, and Ice cream.... all of HER favorite foods :) It was great though and she was in a great mood too. We had a lot of fun and it was a fun day. Her nurses also treated me so some day soon I get to have an hour to myself and go for a massage. A HUGE treat for me and I'm pretty excited. I never really feel like I need time for ME, but who could pass up a massage?

I guess that's it for our week. Maya is pretty heat intolerant so we didn't go out too much. Got caught up on some school work we've slid behind on this summer and worked on her new song for her August Music Celebration for Music Therapy.

Thanks for checking in!

Holly

Saturday, July 16, 2011 7:23 PM CDT

Home! We got home around 4. Too tired to update, but all is well and I'll put a real update on in the next day or two. Thanks for the prayers and checking on Maya.

Holly

Friday, July 15, 2011 6:03 PM CDT

Well, our one day stay turned into two. Hopefully though tomorrow we can head home. Maya's done great. She slept through the hour of getting all her leads attached and has tolerated being wired and wrapped up pretty well. Occasionally she complains her head hurts, but whose wouldn't?

Yesterday we spent the afternoon and evening making paper purses and accessories. It kept her busy and she had a lot of fun doing it. Last night she had a little more belly pain, but her line and tubes are inflamed so that seems to be the trend when they get like this. Today's labs were not really where we like to see them so we made some adjustments and she got a couple of units of blood. We've also seen seizures so we got the info on her EEG that we needed and tomorrow we can make some adjustments to her medications and hopefully get better control over things.

Unfortunately I think she's hit her limit on what she can tolerate. She's very ready to go home and is showing us that's the case. Because of her language processing sometimes she doesn't really say how she's feeling, but rather shows us which can make things difficult. Place that on top of having to put up with doctors, monitors, and all the other stuff that comes with a hospital stay and you can see why she'd be ready to break free.

Thanks for checking on us!

Holly

Wednesday, July 13, 2011 7:54 AM CDT

The weeks seem to fly no matter what we have going on.

This has really been a week of reflection and reconnecting with a few people I've not talked with in a long time. A lot of thinking about where we are in our journey and where we want to go and what is really important for Maya right now.

Today we prepare for another admission to Club Med. This time it isn't for an acute illness or surgery, but for a long-term EEG. It is so much harder to go in when you know you don't "have" to go. Of course, making sure we are in as good of a place as we can be with Maya's seizure control is important, but so is enjoying the beautiful (but HOT) summer days and the routine we enjoy in the summer. I'm hoping the admission is short and gives us the info we are looking for to adjust her meds and maybe consolidate things a bit.

After our quick trip to the ER last week her cultures remained negative so we did a short course of IV antibiotics and were good to go. Her line looks great and the "goo" is gone. Considering the length of antibiotic treatment it looks like maybe this was inflammatory and not infectious. To some extent that is a good thing.

We did take a few walks this week looking for everyday treasures. Although Maya loves her "stuff". Her stuff is most anything she collects. She is as happy with a rock she deems beautiful as a trip to the toy department. She loves the library, walks through town, and just spending time hanging out. She also loves chocolate, movies, chocolate and well.... movies. She's very well balanced :)

I'm not sure I've mentioned this, but we've decided to go to Atlanta to see a physician who specializes in Maya's disease. We use to travel quite frequently to see a doctor who specializes in mitochondrial disease, but i the past few years this has not been possible. There is no treatment or cure for Mito and her doctor's do an awesome job managing her care. We are just looking for some insight into supporting her better and see what is new in the field as far as treatment ideas and supportive care. Traveling will most likely be a one time thing and then communication will continue without the need to travel as not only is it costly, but difficult. This was a difficult decision due to the cost, but easy knowing we'll be finding the best ideas we can for her care.

Thanks for checking in. I'll update from Club Med when I'm able.

Holly

Wednesday, July 6, 2011 10:22 PM CDT

Update: Changed the background so nobody ruins their eyes trying to read it the way it was :) Also wanted to add that after antibiotics last night her site is already improving. She also is fever free this morning and other than tired feeling good.

We spent part of today in the ER. Maya's been feeling fine, but complaining that her CVL exit site hurts when I clean it. It's looked fine so we hadn't thought much about it until today when, during her dressing change I noticed how red it was. After checking the tract there was not pain, but when you pushed on the tract there was drainage from the site itself so off we went. She only had a low grade temp and things lab wise looked good so we drew cultures and she came home on IV antibiotics. The cultures take up to 72 hours to grow so we hold our breath for the next 3 days. Right now she is on two different antibiotics which makes things a little busier for a few days so we've changed our plans for the week and will be hanging around closer to home.

Over the 4th weekend we did go see the fireworks Saturday and then on Monday a parade. Maya loved both of them and enjoyed spending time with her friends too.

Thanks for checking in!

Holly

Friday, July 1, 2011 7:39 PM CDT

¤tWe jumped into summer this week. In addition to our regular medical schedule we were able to go to the zoo, the farmer's market, had a sleepover and played in the pool. We are hoping Maya will continue to feel well so we can go to the fireworks and see the parade this weekend.

We have one more week before we return to Club Med for a short stay (hopefully) to address her increased seizure activity then hopefully we'll be home for the rest of the summer with the exception of trying to squeeze in some more fun.

Having fun playing in the pool.

Butterflies at the zoo!

Farmers Market

Bubbles!!!!

Thanks for checking in. We hope everyone has a fun and safe Fourth of July.

Holly

Friday, June 24, 2011 8:15 AM CDT

We had a fun week visiting with Nana and Papa. Unfortunately the weather didn't even attempt to cooperate so our activities were limited, but we had a great visit anyway.

The highlight of the trip for Maya was getting to go fishing. I'm not sure if some of you longer-term readers remember Maya's list of 100 ways she wants to celebrate life, but it's basically a bucket list of some amazing and some not so amazing things she wants to do. One of the things on this list was to go fishing and we finally made that happen. We happen to live in a town full of lakes, a county full of lakes actually. Just two blocks from our apartment is an old fish hatchery pond they now stock and although the fish she snagged were small she was thrilled with each and every one of the 22 fish she caught (and threw back). So it looks like I'm going to need to learn to get those fish off the line and take her fishing again :) I"m not a fan, but I love finding things she can and wants to do outside of the living room.

We were also able to share dinner with some friends one night and they got to meet another friend of mine they've heard about and never met. We were fortunate enough to have nursing care for Maya two mornings and could do all the things we needed/wanted to that she never enjoys without Maya needing to tag along with made for a nice visit.

Our only regret from their visit is it always ends too soon. So much more we'd like to share with them and so much more time we'd like to spend, but we all have things to do and we'll hopefully get together again soon. It was nice to to spend a day doing some things I'd been wanting to do around the apartment. It's been a year now since we moved in (well in April it was) and I think we finally have things set in a way that will work better. My dad put up some shelves for me and we moved the beds around. I'm actually sleeping in a bed now and it's been years since that's happened.

I guess that's it for today. On the medical front things are stable. We have some little tweaks we need to attend to and we are still trying to find the right TPN recipe for her as since her surgery her body isn't responding like it had been. We have about 3 weeks until our next planned admission for her seizures and hopefully that one will be short and productive.

Thanks for checking in!

Holly

Thursday, June 16, 2011 9:38 PM CDT

Not much new this week. We've not gotten out and about as I'd hoped as Maya had a couple of rough days. We have been able to get out and walk on most days and Maya's started keeping a list when we walk. We pick a different theme each time we walk and she will list 10 things we find that are on the list. We've done animals, purple things, and things God created. When she comes home she writes out the word and then draws a picture to go with it. Then we staple all the pictures together into a "book". It's been fun to see what she comes up with and the illustrations she makes to go with them.

We also moved our bird feeder so Maya can see it from her bed. We've gotten so many more birds now and it's been really fun to watch them and then look them up in her bird book. Our little friend who built in our bird house is indeed a House Wren so we've read up on him too. We also now know it is a "him" since the male builds the nest then the female comes and throws out all the sticks he added that she doesn't like (gotta love it!) then lines the nest.

Right now Maya's big excitement is waiting for Nana and Papa to arrive. They should be here on Sunday and she can hardly contain her excitement. We haven't seen them since November and it's been way too long.

Medically things are the same. Still doing labs a couple of times a week and tweaking her TPN. We do have another admission scheduled for July for a longer-term EEG as we've been adjusting her seizure meds over the past few months and may need to add a second IV one and get rid of the J tube one. HOpefully just adjusting what we are on was enough though.

Thanks for continuing to check in. I'll work on getting some new pictures uploaded for my next entry.

Holly

Thursday, June 9, 2011 12:11 AM CDT

Wow, what swings in the weather we've seen this week. Went from too hot to even be outside to cold and rainy.

Tuesday was so hot and we decided it was time for a pool party. With Maya's problems dealing with heat and her lines we had to modify things a bit. Even Waddles got into the action for awhile although he seemed to hog the pool a bit.

Our bird is still busy filling up his new house. i have no idea what type of bird it is and Maya would love to learn more about him so if you have any input on who this little guy might be let me know.

Not much else new around here. Maya's pain seems to be slowly creeping back. Not sure if it is because we've weaned her back to her pre-op dose of pain medication or if it something else. Labs are OK, improving and on the road to normal.

Today was speech and music therapy. Both things she really enjoys and that provide her so much. Thanks for checking in.

Holly

Sunday, June 5, 2011 11:08 AM CDT

Maya's labs came back OK (not to be confused with normal) and right where we like to see things. With Maya labs are never "normal" but we know where things like to sit with her and that is what we look for. In fact, there are a few "normals" on the lab sheet that if she falls in that range we know something is up and we need to investigate. We'll check things again on Tuesday and see where they sit. Hopefully after this week we can return to doing labs just once a week again.

Yesterday we did load up in her wheelchair and walked down to the farmers market. We live in a tiny town so the fact we have a farmers market is amazing and although it's small Maya always loves to go and look at all the colors and feel all the veggies and other items they have for sale. It was nice and we went early before it got too hot for her. I'm sad spring was never really here. Maya doesn't do well with temperature extremes so although we had a few nice spring-like days this year we never really had a season where she could go outside whenever she wanted to. Oh well, summer is here and I love that things are all in bloom and beautiful. After we'd gone to the farmers market we went in search of a hanging basket of flowers for our little garden. Maya found the one she liked and then spent nearly a half hour just feeling and looking at all the different flowers they had. We are working little by little on her garden as we are able and it's shaping up nice. Since we put in things a friend gave us last year from her garden I can see now what made it and what didn't and we'll have to move things around a bit, but by next summer all of the yearly stuff should be nice and full and look great and all we'll have to do is add our fairy touches and some flowers. I'm hoping to put in some bulbs this fall since I know she'd love to have daffodils early in the spring and not have to wait on the tulips to do their thing later in the spring.

Pookie is very happy we are home and has decided 4am is a good breakfast time. Unfortunately he's getting away with it since I have meds to give at 4 and get up anyway. Wednesday is our last day of antibiotics though and he'd better figure out a new schedule by then because I'm not getting up just to feed him. Right now Maya's meds are pretty busy as she's on several antibiotics and they are cutting into my regular sleep schedule which isn't that great to begin with. No big deal though, it's well worth this price to be home and have her feeling good and enjoying her days. Today will be a quiet one as I think I wore her out yesterday morning and even though she slept all afternoon she's pretty tired. We are going to do Sunday School here at home and then just let her relax since this week we are jumping back into music and speech. Hopefully while she naps I can dig out the summer clothes and make that changeover.

So, that's our excitement for the week. Tuesday we resume our normal lives with speech and then to CHW for labs. Wow... we are out of practice on the real life thing. Need to get in the swing though since later this month we have Nana and Papa coming for a visit and need our routine to be routine so we can visit and have some fun! It's been way too long since we've visited so we are looking forward to it.

Holly

Thursday, June 2, 2011 3:47 PM CDT

We are home. Not much time for an update as she came home on antibiotics and is still having some issues, but HOME!

Labs again tomorrow and we'll decide from there if we need to do anything further. Right now she's on the couch resting. Hoping this weekend I can get out and get her fairy garden into shape for her. We were both excited to come home and found out a little bird had taken up residence in the bird house she built with Papa in the fall.

I'll update tomorrow after labs and hopefully will have more time to make it more complete, but until then I wanted you to know we were home.

Holly

Tuesday, May 31, 2011 12:57 AM CDT

Still here.

We were hoping to make the great escape today, but it wasn't meant to be. Our current issue is that this new J tube (which I greatly dislike by the way) quit venting and now it won't let you put anything in either. They've tried a few things and now we are waiting to go to interventional radiology to see if they can feed a guide wire through it or if they'll need to change it out. Normally it wouldn't be a huge deal to change it out, but being only 7 days post op makes it a big deal.

We are working on a steroid wean with her in hopes this time she handles getting back to her regular dose from the higher doses we've been giving her. We are also hoping to reduce some of her antibiotic coverage in the next day or so, but are in a holding pattern right now until the tube issues is taken care of. They don't go through her tube as they are IV, but her body doesn't respond kindly to change.

Her kidney's aren't really very happy either, but that will take more time to sort out and is something we can tackle over the next few months at home and adjust for changes as needed.

Other than all of this medical stuff Maya seems more herself. She's been doing stickers and cutting paper and playing Cooking Mama on the DS. Those seem to be her activities of choice... well that and Waddles.

Yesterday I read the book, "Heaven is for Real". It was a great book and pretty quick read. If you're looking for summer reading I'd recommend it.

Thanks for checking in, hoping maybe my next update will be from home.

Holly

Sunday, May 29, 2011 8:37 AM CDT

After a day of not quite knowing what was going on yesterday and no good reason for the way her body was acting today seems much better. We are now back to where she was 2 days ago. The only thing we really changed was to restart her stress dose steroids and she amazingly perked up and shaped up rather quickly after that. Todays she is awake an interactive, much more herself and her labs look better too. All that said we still have the concerns we had 2 days ago of this elevated heart rate and temp that don't seem infection related and a hgb and hct that are drifting back down not even 24 hours after she received blood.

We have a few ideas as to the crazy labs we saw yesterday along with the urine output that was just way out there. It is most likely her adrenal failure and the fact we weaned her back off her stress doses too quickly, but to have her have almost a liter of urine out in 2 hours was concerning as was the serum sodium we saw just before that happened. Between the adrenal failure, her kidney wasting issues, and dysautonomia putting her symptoms together to make sense just doesn't happen although we all agree she is "off".

Tomorrow will be a much better picture of what is actually going on and if we are moving the right direction. Her ostomy is finally starting to work now after over 5 days of nothing which is good. We did change types of g and j tubes and I'm not convinced it was a good change for her. These tubes don't seem to vent as well. Any ideas are greatly appreciated. For those tubie Mama's out there we went from Mic to an AMT. We do not use buttons, but rather the smaller tubes you can still change out like the button, but that you can adjust the disc for distention and not have them get so tight. We also vent to farrell bags and I'm not sure if that is the problem or not. It seems like she's created her own negative pressure system and they just won't vent, but when I hook up a syringe and manual pull back I've pulled up to 250cc out of her stomach. The J just plain won't vent for us although I've been able to get some meds in but even those you don't have to clamp or anything they just stay put which is not historically what we've seen. These tubes seem much more ridged than the Mic's and it seems like I have to pull up and give some tension to the G to manually vent it? Any ideas because we are back to retching if it isn't vented somewhat every few hours. I'm also use to when things get bad just taking the entire tube out and letting things run out through the stoma then putting it back it which always did the trick, but I'm not sure how to use these tubes and the J can't be changed yet anyway as taht is a fresh site. The old J site on the other hand seems to have closed nicely and this tube seems to be painful mainly as a post surgical issue and not the extreme neuropathic pain we saw from the other tube.

Ok, I think that's it. We've had wonderful nurses taking care of both of us and making sure Maya's cared for and I have what I need (you know, things like Bacon :) ) We seem to have a good group of doctors and NP's this time around too so that's been nice and gives me a chance to relax a couple times a day knowing they are on top of things.

We love hearing from everything who's left messages in the guestbook. Maya must ask me 5-6x/day if she has any new messages.

Holly

Saturday, May 28, 2011 8:05 AM CDT

Maya's pain seemed worse yesterday as the day went on and by evening we had to adjust her meds back up to where they'd been post op. She did sleep pretty well though until early this AM. We decided to try and syringe out her G tube since although it was venting into a bag she was still retching. We ended up pulling out 8 ounces of blood and then both her J and G tubes were venting blood. From the looks of it it was older blood so the hope is she is not actively bleeding. We did an abdominal x-ray this morning and are giving her some blood right now. The surgery team came around to see her again and the plan right now is to re-check her CBC after her transfusion and see where things stand to further determine if this is active bleeding that is more significant or not.

Yesterday she was able to do school although unlike the previous day she didn't sit up. She was very excited to see her teacher and they worked on some rhyming and reading since Maya had made it clear the previous day that she'd done enough math for the week :)

I'll update again this afternoon if something changes, but need to get back to Maya now. To those of you who've sent e-cards through the hospital website THANK YOU! She was so excited to get her cards yesterday and we taped them up for her.

Holly

Friday, May 27, 2011 6:20 AM CDT

Sleep is not a close friend of mine, but usually I get a visit early each morning for several hours. Last night our visit was very staccato as I was woken hourly by Maya's wonderful nurse so we could together coax Maya's bladder/catheter into working just a bit. It was like clockwork each hour, but I'm so thankful for nurses who are attentive and not only see the issue, but attend to the issue and work through it. At 5 I gave up on sleep, I also gave up on her catheter and we decided to change it. Hopefully now it will give us a few more days of cooperation. Unfortunately the issue isn't really the bladder or the catheter, but rather the amount of bicarb and calcium she is losing in her urine. These combine to make flakes and if left long enough, stones. These in turn block the drainage holes in the catheter making it impossible to drain. Just one more outcome of the shortages and secondary changes we in turn are having to make to her TPN.

On the infection front she decided it would be a good time to spike a fever yesterday just as we were feeling good about removing one of her two antibiotics. Since she managed this fever while already on a "big gun" we had to rethink and regroup and mix it up a bit. So now she is on 3 antibiotics and hopefully covered a bit better. I think we did the trick as her temps are much closer to normal now and her heart rate is also trending down.

Her belly looks good. All of the incisions look good although things are still pretty tender. Her drainage bags are working and slowly filling with fluid which is also positive. I'm guessing at some point today maybe her ostomy will kick in too and that part of the recovery will be complete. Yesterday we began her wean from some of her pain medication with the goal of getting her back to her pre-surgery/home levels of medication some time in the next week or so. We can work on this at home also, but need to have all these other issues taken care of before venturing home. Right now it is looking like early next week. I have to say, I'm a bit rusty on the whole hospital routine and in an attempt to not overpack, I may have underpacked so laundry will be in order today.

I think that's it for today. Maya is working with her teacher each afternoon and it's the highlight of her day. We were hoping for music therapy yesterday, but it didn't work out timing wise. We did get to see the PT she typically sees on Wednesday, but because of their schedules she'll only get PT weekly this admission.

Thanks for joining us on this journey......

Holly

Thursday, May 26, 2011 9:30 AM CDT

It is amazing to me how quickly one can assimilate back to the routine of the hospital and all that goes with it. We've been fortunate enough to spend 6 months outside these wall, uninterrupted. This was not an easy feat nor something we take for granted. It was also not without it's challenges, close calls, and day visits for transfusions or infusions. Regardless though, we were home and cherished every moment. It did make coming back that much more difficult. A world I wanted to avoid with my every fiber. A place I wanted to wipe from our daily lives, but the reality is, it will always be a part of us and that's a good thing. Without this world inside these walls I would not have my beautiful, sweet, loving, funny little girl (who I'm often reminded is not so little anymore). Without the skills of countless NURSES, doctor's, and other staff this would not be my reality. A reality I feel blessed and humbled to be a part of. To be entrusted with this child, a gift from God, a child who I longed for, prayed for and searched the world for. So no matter how many times I'm woken during the night with a call for reassurance or the sweet voice asking, "are you still right there Mama?" It doesn't matter. I'd do it over and over and over again.

I love the comfort I feel inside these yellow walls, the beeping of the monitor that even without looking lets me know on some level how she's doing. I like that when they come to clean her room everyday she's spoken too by name. She's grown up here. She's known by many including non-medical staff. The same person has cleaned her room for the past 5 years and even she notices how much she's growing and thriving and how little we've been there the past year (only 5 admissions in 2010!).

I don't really know what I'm trying to say. Just that this is our lives and I'm OK with that. Mostly I say that for myself as the pace we live at can at times seem stagnant. Doing the same tasks over and over and wondering what really is helping and what is just something we've done over the years and has become habit. Today is the telethon for CHW. It is a time when stories are told, lives are changed, and money is raised to keep this place at the top of it's game and continuing to change and save lives everyday. When you are here you realize how much these people become family. They are a part of your life even if for just a few days ever few months, but they watch your family grow and struggle, celebrate and morn. It's a world I never new existed even though for years I worked right in the midst of it.

So after my rambling I'm sure this is more what you came here for.....
Maya had a good night. Not quite as good as the night before as she seemed to sleep more and therefore didn't have the consistently good pain control she seems to get from her PCA. We have her on her PCA (with an increased dose) and a basal rate along with her home basal medication for pain and routine. Our goal is comfort. She is so tolerant though from years of use that the doses she is on I'm told would have the rest of us on the floor. Yet, she sat up and did 15 minutes of school yesterday. Had PT in her bed all the while telling tales of the past few months, and happily discussed with Waddles that it's ok to feel sad that she has other friends too because he will always be her "Sonny Boy" and she loves him the best.

Today's plan is to again adjust her electrolytes, make a small change in her antibiotic coverage and wait for her heart rate and temp to return to where they belong (they've both been elevated since she came back from the OR). Once we achieve this, wean her back to her home pca levels, and get her labs looking good again we'll go home. Until then we'll wait. It's still early in the process, we are not in a hurry, just letting her body tell us when it's ready. As typical her bowels are still sleeping. They spend much of their life not working right so this is just another thing we wait on, a much slower process then most without pseudobstruction. Again, not a huge deal as we don't use them for nutrition anyway.

Thanks for the continued encouragement. Maya and I love reading our messages and knowing you each stand behind us.

Holly

Wednesday, May 25, 2011 1:42 PM CDT

Maya's doing well today. She is still needing a lot of pain control and tires quickly, but she's been up to playing her DS a few minutes and did a little PT this afternoon. She fell asleep waiting for her teacher so hopefully she'll come back later.

Labs looked OK this morning. We had to give her another mag bolus and also another calcium bolus and will recheck labs again at 4. We are trying to decide with the drug shortages which will be best to keep her the most stable yet still conserve and work within the confines of what is compatible with other electrolytes and medication. Unfortunately her kidney issues make her electrolyte balance pretty difficult to balance at times.

We still aren't seeing any output from her ileostomy or her venting tubes, but it's only been 24 hours so that may be the reason. It's something we'll watch over the next several days to see if it picks up.

Thanks for the continued notes and prayers. We've been so blessed by those of you who stand beside us on our journey.

Holly

Tuesday, May 24, 2011 9:16 AM CDT

Maya's back in her room and resting. She's not super comfortable, but we are working on her pain control and she's able to rest now. The new tube went in smoothly and the surgeon was really happy with how things went and the amount of scar tissue he ran into when moving the small intestine around. The next day or two will hopefully show us how successful this was. Right now we can't use her tube and her IV access is limited (couldn't get a peripheral IV in while she was in the OR). She has a double-lumen CVL, which we in turn divide into 6 infusion lines, but we've had some issues with her magnesium being very low and she's needed two infusions over 2 hours each which takes up on entire lumen and doesn't leave us with any access that is TPN free. She can not have her TPN discontinued for any reason which is part of the problem. There are national shortages of electrolytes used to make her TPN (IV nutrition) so the hospital is giving different things, but only every other day (on 3 different electrolytes) and unfortunately Maya does not tolerate having Magnesium left out as she dropped the first 8 hours she was off, received a bolus, then dropped even lower 4 hours later. She is getting another bolus now and it seems to be helping how twitchy she's gotten from the low magnesium. I'll update again tonight if something changes otherwise I'll wait until after rounds tonight. Thanks for all the notes and wishes and prayers.

They just took Maya into the OR. They said about 2 hours before I'll hear anything. Maya was doing well. They were able to make her pretty sleepy before leaving the room so she was doing well and had Waddles in her arms.

I'll update as I hear more. Thanks for all your continued prayers.

Holly

Monday, May 23, 2011 6:24 PM CDT

We are settled into Maya's room and she is happily playing her DS. When we first arrived Maya and Sniggledoodle (her doctor) decided they needed to sing their sentences to each other. They were quite entertaining to say the least.

We are in room W516 and the number is (414) 337-8136. The new policy in the ICU is we can use our cell phones so I can be reached at that number and have voice mail that way.

Maya's on the surgery schedule for 9am tomorrow. We've already talked to anesthesia so I think everything is settled and everyone is ready to make this go smoothly for Maya .

I'm still hoping I'll wake up one morning feeling better :) I did go back to the doctor today and was started on steroids to hopefully improve things and in addition to the antibiotics maybe I'll see (hear, feel) some improvement soon.

We have now ended the longest time out of the hospital in Maya's entire life. A nearly 6 month run outpatient! It's hard to believe. I like to let myself believe it is because she is the healthiest she's ever been, but know deep down it is just because we manage so many of her needs at home coming in only for outpatient blood and when we need to be inpatient. On the other hand I'm so thankful we are at the point we can manage her needs at home for the most part and have a team willing to work with us in letting her be home and just be a kid as much as possible.

I'll update tomorrow as we know more and get surgical updates. Thanks for checking in and for the prayers and well wishes. Right now our biggest concern is keeping her pain controlled. Because she is already on such high doses of pain medication it isn't easy to get her post op pain under control.

Holly

Friday, May 20, 2011 10:41 PM CDT

We are busy getting ready for Maya's admission. I've had a bad sinus infection and am on antibiotics. I'm hoping to feel a lot better before tackling the week ahead of us. It's hard enough to be inpatient, sleeping on a rock hard "bed", dealing with the daily in's and out's of doctors and rounds without also having to deal with being sick. Thankfully although Maya also had this and a fever of 102 for few days she only had the viral portion and didn't get the added bonus of a secondary infection. So thankful for IVIG, steroids, and neupogen keeping her immune system working enough to fight some things off.

Maya will be admitted on Monday and I'll be sure to update with our info. Tuesday is her actual surgery and hopefully we won't be inpatient too long. She is actually looking forward to getting this done and having better control over her pain.

Maya's fairy garden is looking good. They had to remove some of our shrubs which leaves her that much more room for her garden. I'll take some pictures this week to share. Now that our bushes are gone she's able to look out her window next to her bed and see everything. She especially likes this in the evening when her solar lights go on. She has one in the shape of a butterfly and the other is a sunflower. After seeing Gnomeo this spring we've got a few more ideas for this summer too.

Thanks for checking in.

Holly

Tuesday, May 10, 2011 11:50 AM CDT

Another busy week flying by!

Maya is excited today after receiving her Flat Cousin in the mail. For the summer the girls are exchanging themselves and I'm keeping a list of those of you who've volunteered to take them next. I will keep you posted and we are excited to know of all the adventures that are to come!

We are preparing for Maya's surgery and emotionally it's been a bit hard for both of us. I think mostly because we've been home so long (6 months!) and knowing we have to return is hard. It's a good thing though because hopefully we'll have much better control over her pain. Most likely I won't update until we are ready to go in as we have lots going on. I will do my typical daily updates when we are inpatient though as things change and you never know what kind of trouble we'll get into!

Sunday Maya made me a couple of wonderful flower projects for Mother's Day. The best part was her telling me I could have them before bed, but "only if I was good all day and didn't yell!" You have to love it. You'll be glad to know I did achieve the goal she set out for me and had my gifts by bedtime.

Thanks for checking in!

Holly

Saturday, May 7, 2011 7:14 PM CDT

This week was busy with appointments. Nothing to exciting and mostly just follow-ups and routine things. We are still working on getting her pain in a place it is manageable, but we're in an OK spot there and only 2 weeks left until her surgery that will hopefully eliminate at least one of the issues as far as that is concerned. She's also had some kidney stones from what we can tell that will hopefully resolve on their own. It's not a new issue so we are watching and waiting. We did adjust her meds that help prevent them and since she's grown so much the past couple years that may do the trick. She's now past the 50 inch, 50 pound mark. So big... I look at her pictures from when she was little and wonder what happened, but I am at the same time thrilled she is growing and thriving.

We did have a few nice days amidst all the rain when we were able to get out and enjoy our walks again. We did once around town and then our nice walk down the bike path. Maya is loving watching the buds on the trees grow into leaves and the flowers start to bloom. Our tulips are up and starting to open which thrills Maya. We have all her fairy garden things out and the birds frequent her feeder. I"ll take some pictures this week and make sure I get them posted.

Maya's really looking forward to Mother's Day. She made me a "secret" card and "flower" and tells me everyday that I can't peak. I have to smile each time she does this because I'm the one who helped her with the card and craft project :)

We also made our "flat Maya" and she is off on her journey I'll be sure to include some of her adventures here also as Maya has some big plans for her flat cousin. We are hoping to get to the zoo soon since they have two baby penguin chicks this year we want to see before they get too grown up and they are having a butterfly exhibit and as you know she LOVES butterflies.

Thanks for checking in...

Holly

Friday, April 29, 2011 4:58 PM CDT

Maya had a great Easter. We went to church then had brunch with some friends. Maya enjoyed playing while we ate then was able to go on her own hunt for Easter eggs. To say she was worn out afterwards is an understatement, but she had a great time.

Our weeks been otherwise low key. I think her highlight as always is her Thursday music therapy. She's working hard on leaning the signs to more songs and is also leaning to play her Q-Chord. I just love to see her so engaged in something like she is with music.

We are hoping this next week to finally get in at the wheelchair clinic. Because of her pain she is uncomfortable in what we've been using for her wheelchair. Right now we are using a stroller with pillows which works fine, but it will be nice to see if we can come up with a better long-term plan.

Here are a few more pictures from Sunday...

Thanks for checking in...
Holly

Saturday, April 23, 2011 10:19 AM CDT

I LOVE watching Maya learn. It is so amazing as we'll go through spots where I wonder what she's taking in and what she is understanding then periods where she just blossoms and soaks in every bit of info she can. We are in the midst of a soaking time right now.

She is reading everything handed to her. For awhile she'd quit reading, not sure what it was about, but she'd stopped even attempting. Now she is trying to read all she can. She reads at about a K-1st grade level and is loving it. She likes you to read something to her first and then she reads it the second time around so she has an idea where things are going which is just the way it works for her. Today she got her Easter basket from my mom and had to attempt to read all of the packaging from her crafts.

Earlier in the week we were at Children's and walked by the pharmacy. There is a large window into their compounding room and the kids (and adults!) can look in and watch them work. I was showing this to Maya and explained what compounding was and how you could compound other things, such as words. She loved it and for the next two hours kept trying to come up with more compound words. It was so fun to watch and I love using the everyday as part of her schooling. The majority of her learning is more in relation to life skills so it is always fun when she grasps a concept like compound words.

I've been doing a lot of "brain" work with her lately as after her recent testing we were able to see areas where she had greater weaknesses and also how her strengths could possibly offset these. I like to keep her processing as this is something she struggles with. In the car we have a CD player so every few months we change up the CD's. Over time (we spend a LOT of time in the van going to and from therapy and appointments) we talk about the songs and what they are from or who sang them. After awhile it becomes a contest to see who can name the song and where it's from or who sang it first. It's a lot of fun for her and keeps her engaged and having to work. On the flip side, I finally know this info to as I love to have music on but rarely know the actual name of the song or who sang it :) We switch it up from classical to Disney songs, to show tunes, or whatever her current favorite is. In all honesty, I think she is WAY better at this game than I am :)

We've decided to pick a state a week to learn about starting in June after her surgery. We'd done something similar a few years ago with the help of so many of you in collecting postcards from each state. I plan to use these along with a set of books and maps I found at a garage sale and over the year learn more about our country. I thought maybe I'd mention with my updates what state we were currently on and if you happen to read here and live there maybe you could sign the guestbook with something about your state or just say you live in whatever state it is. Would be fun for her to have multiple ways to think about and look at this information.

The other think we are doing is a "flat Stanley" type project with her cousin where they will "spend" the summer with each other exploring where they live and what they do. If "flat Maya" makes it through the summer with her cousin I thought maybe I'd send her elsewhere in the fall.

Well, that's about it. Pretty low key week here other than we did have to increase her seizure meds as we are seeing more seizures than we've seen in the past several years. Hopefully it will do the trick, if not we'll add another medication to see if that helps.

This weekend will be all about Easter. Celebrating the new LIFE we've been given in Jesus. I have several fun things planned including decorating eggs which she hasn't done in several years and tomorrow of course we'll go to church then we are having brunch with some friends. I'll be sure to take pictures and will try and update early in the week.

Thanks for checking in and sticking with this VERY LONG POST! Sorry!

Holly

Sunday, April 17, 2011 4:12 PM CDT

I love to hear Maya giggle. There is no better sound in the world.

This has been a weekend of giggles. Such a nice change from last weekend and how she's been feeling. She was seen by her pediatrician on Wednesday and we found she had Strep. Thankfully now that we are treating it she's feeling much better. Not sure how she managed to get it in the first place between her IVIG and the fact she was on ampicillin the week prior, but she never ceases to amaze me :)

We did have a few nice days before it SNOWED!!!! yesterday. We've been going out for walks (well... I walk, she rides) and trying to enjoy spring. Now if Mother Nature would just cooperate.

This week we just have labs and a urology appointment. We have plans to bake cookies and decorate eggs too. We've also been planning out her fairy garden, but at this rate that will have to wait another month or so until spring decides to arrive. Our tulips are up, but I'm not sure what's going to happen with them at this point.

Well, nothing exciting, but wanted to put on a short update before getting back to my giggly girl. We are working on a new song/sign just for the fun of it. I'll be sure to add it when we are finished. Thanks for all the comments on her song. She was thrilled to hear them.

Holly

Saturday, April 9, 2011 12:24 AM CDT

Hi! Sorry for the lag in updates. We've had some rough days lately, but some rather good days scattered in the midst too. One of those bright moments I'll share with you below.

I hope this works. It's a picture into the highlights of Maya's week... music therapy! They had a celebration of music the kids were all able to have a chance to perform what they'd been working on. Maya was a bit upset by all the people "looking at" her. (I'm not sure where she thought they'd be looking since she was on stage!). It all worked out though and she had a great time.

Most of our days unfortunately are more centered around the fact her pain is becoming fairly severe at times. We don't focus on it, but finding a position of comfort and a balance of medication that allows her to be awake and participate, but yet have some comfort can be a challenge at times. We are counting down until May 24 when her surgery is planned.

Maya is loving spending time watching "new to her" movies. She's finally branching out and watching some of the classic Disney cartoons and as always we have some sort of older TV show we watch. Right now we are watching "Webster" with an occasional "Partridge Family" thrown in the mix.

We also are enjoying having a bird feeder out and filled. She received this for Christmas and we finally have birds coming to visit including several cardinals (OK several squirrels too, but Pookie is the one who's liking that part!)

This week will be a welcomed 'slow' week. She has speech therapy a couple times, music and sees her pediatrician, but nothing else is planned so it will be such a nice change from running daily into Milwaukee as we have the past two weeks.

Thanks for continuing to join us on our journey.

Holly

Friday, April 1, 2011 7:06 PM CDT

For Christmas Maya got a new game called Colorku. It's similar to Soduku, but in colors instead of numbers. We are hooked. We play at least once a day and she will not quit until we've figured the puzzle out. Usually I'm able to glance ahead and give her an area I know she'll be able to figure out a color. She's getting better though and sometimes will get a step ahead of me and find one on her own. Its been fun to play with her and see her develop new skills

Most of our week was busy. Lots of trips to CHW and in to Milwaukee for other appointments. Monday we'll go back in for a transfusion since her counts have dropped and hopefully we can connect with the urologist as Maya's ultrasound showed she might need something done with her vesicostomy as she doesn't even empty when we are cathing her. This week she'll also follow up in neurology to discuss changes we saw on her last EEG.

We are both counting down the days until spring comes. I can't believe snow is still in the forecast in April. Maya peaks out each morning checking to see "if spring is here yet". To pass the time we've begun spring cleaning. Here she is sorting out her "bows".

As far as pain control things are so-so. She has some good moments, hours even and then we seem to take a turn down again. We made a few more adjustments and hopefully that will help. We are making progress, just not to our goal of having her comfortable.

So, that was our week in a nutshell. She did have music therapy again this week after three weeks of missing for various reasons. VERY fun! She just LOVES music. So grateful for the chance to participate in this great time.

HOlly

Saturday, March 26, 2011 7:09 PM CDT

Sorry for the delay in updates. I thought for sure I'd updated this week.

Maya continues to struggle with pain and we continue to work with her team to find the best way to keep her comfortable and find a solution until her surgery. Her surgery isn't until the end of May so we still have awhile. We are going ahead with an ultrasound on Monday to further look at what might be going on outside of what we already know. We are pretty sure it's all related to her J tube and small intestine, but want to check out some other causes that might be impacting things more.

Because of how she's been feeling we've not been doing too much other than her schoolwork and our weekly therapy and library trip. We've been planning on ideas for her fairy garden and after seeing Gnomeo and Juliet we have some fun ideas. I'll wait until we actually are able to get outside (It would need to stop snowing first-ha! ha!) to get things started and we promise to share.

Maya's hoping to get to see the movie Hop when it comes out and on a daily basis asks when spring will be here :) She's also excited about her upcoming music therapy performance and a chance to sing her song. She's going to sing and sign Somewhere Over the Rainbow.

This week we are busier with doctor appointments and hopefully we can get her in for blood sooner. She needs a transfusion and we'd thought we could wait another week, but she seems to be dropping faster than we anticipated so I'm not sure she'll make it that long. So thankful to all the people who take the time to donate blood.

Holly

Thursday, March 17, 2011 1:22 PM CDT

Thanks for all the well wishes, we had a wonderful Gotcha Day! It was pretty relaxed and we spent much of the day just hanging out. She loved getting mail and her email/guestbook messages.

This year she had yet another surprise for her. It wasn't arranged until the next day and was a Christmas present from a friend although she didn't know about it yet. In anticipation and the tradition of getting a special gift as we celebrate being a family I had gotten Maya a locket. I figured it would fit on the chair she wears the ring on from a previous Gotcha Day. The reason it was so fitting as on Sunday she was able to go see ANNIE! Loving everything musical she was thrilled and it was also one of her items on her 100 Things to do to Celebrate Life!. She'd always wanted to see a professional stage performance and the right thing has never come along in the right timing so this was awesome.

Well, she LOVED it. She sat entranced by the singing and was wrapped up in the story. Unfortunately pain is now a huge issue any time she sits for long so the 2nd Act was spent laying across our friends and my laps. Still she loved it and was thrilled to be there. She came home and must have been having wonderful Annie dreams since she slept from Sunday evening at 7 until Tuesday morning! Yep, totally missed Monday. So worth it though and all is well now as she's feeling good again.

The rest of our week can't quite compare to the weekend. Just therapy, doctor appointment, and labs. Nothing too exciting this week. She's very excited about it being St Patrick's Day and has been handing out "lucky" coins all week.

We are also getting excited by springs peaking it's head out and some sunny moderate temp days. Every morning she looks out the window checking to see if the leaves have appeared yet :)

Thanks for checking in We continue to plug along trying to keep the pain beast at bay until we find a way to fix the tube problem.

Holly

Friday, March 11, 2011 6:48 PM CST

Ten years ago tonight I sat waiting... waiting for morning to come so I could go to the airport and finally meet my little girl. I'd been waiting 7 LONG months since I'd seen her first picture and video clip and could not wait to get my hands on her since by this point the pictures I did receive were nearly a year old. I had no idea that within 24 hours my life would be changed forever.... Changed in a way I could never imagine and a way that completely changed and formed the person I've become.

Tonight I lay here on the couch watching Cosby Show reruns with my girl and listening to her eagerly make plans for our day tomorrow. She's wants to play games, watch movies, and see the video of our first day together. I don't need the video to remember the night she was placed in my arms. If I close my eyes I can still smell how her hair smelled, feel how tiny she felt in my arms and envision that first little smile that crept onto her face. I can remember the first night when after traveling for 3 days and an entire day worth of time changes and jet lag she chose not to sleep... not to cry, but to watch and take in her new life. She's not stopped taking it in since that day. She's become one of America's biggest patriots and proudly calls herself an American. She's proud of her heritage and loves to learn about India. She often tells me a story of a little girl who was praying to God for a mommy... a little girl who was waiting and a Mommy who was praying for a little girl.... She loves the God who brought us together. We are family.

I put together this slide show as a quick glimpse of the past 10 years. There are so many pictures, so many memories, but there are some of my favorites of our life as a family.

Make an on-line slide show at www.OneTrueMedia.com

Thanks for being a part of our journey...

Holly

Saturday, March 5, 2011 10:56 PM CST

Time moves too quickly... sorry for the lack of updates, I never quite know where time goes.

This was a rough week for Maya. Her pain hit a level we couldn't "wait" on a plan any longer. She was miserable much of the week and we were finally able to get a plan in place that provided her good relief quickly and a longer-term plan to hopefully keep things moving in the right direction. Hopefully if we work on part of the problem she won't need as much pain medication, but only time will tell. We don't have dates yet, but the surgeon felt that by moving her J tube we could get more relief from her although he couldn't be sure if it would last more than a couple of years. We all agreed though that even at that it would greatly improve her quality and ability to enjoy life so it's worth it. Right now it is just good to see the increases in her medication working for her and she was able to play on the computer and watch a few movies today.

I'm working on a slideshow to put up for our big 10 year mark on Saturday and hopefully will get that finished this week. Next weekend we are going to see Annie (the stage show). Maya loves Annie and this was a Christmas present from a friend so it should be a lot of fun. I can't wait to see her take it all in. She was practicing her songs this afternoon although i warned her she can't sing at the actual show. :)

Speaking of singing she's working on preparing a song for her music therapy celebration. We are learning the signs right now and she already knows the words. I'll make sure to record her singing/signing and post it. The celebration isn't until April, but at the rate time seems to fly I'm glad we are working on it now!

Thanks for continuing to check in.

Holly

Friday, February 25, 2011 10:58 PM CST

This week has been full of ups and downs. One day it seems Maya's is getting sick and then the next she seems to be on the upswing and improving. It's not really anything new, just some weeks the highs and lows are that much "higher and lower" and it's more concerning than others. No fevers so we are good watching her here at home and it doesn't seem to be line related. I've kept her exposure way down this winter which I think helps tremendously. Thankfully this week she's due for IVIG again so that should give her immune system a nice boost.

Maya was beyond thrilled when Waddles and Gloria received a wedding card in the mail. To hear her go on and on about something so simple just makes me smile. She is so good at embracing life where she is and just hanging on for the ride. She finds so much to be happy about each day even things as simple as cards for her "son" Waddles or her new love of jello! Each night she eats about half an ounce of jello for her snack and finally I think we've found something that neither comes back up or causes her to retch and need to be syringed for the next 3 hours.

Tomorrow she wants to make a "collage". She made one on the Sesame Street website with virtual objects and decided she needed a "real life" art project. She spent about 15 minutes telling me what a collage was and how she was planning it out. So far I've been told she needs "cotton, sparkles, shimmers, glitter, diamonds, and a LOT of glue" Good thing I have that bag of diamonds buried out back or her whole project would be ruined!

Medically we did see endocrine this week. No big changes, just some additional labs we'll run when I draw her weekly labs on Wednesday and follow up in 6 months. She continues to grow and thrive so everyone is pleased. She weighs twice what she did 5 years ago when we first came here which is awesome especially considering how terrible her nutrition status was at that time. So much good in the past 5 years. So much more LIVING... and THAT'S what it's all about!

Hard to believe in just a few weeks we'll have been a family for 10 years! I think back to 10 years ago and I was going crazy just wanting to get my hands on my little girl and at the time had no idea when that would be. i didn't find out until 3 days before she arrived she was on her way.... what a ride these years have been... so AWESOME. I'm so thankful and awed that God entrusted me with this gift.

Holly

Saturday, February 19, 2011 11:10 PM CST

Sorry for the delay in updates this week. NO excuses, maybe we are just that boring! Boring is good, it means things have been pretty status quo around here.

The biggest news of our week was Valentines day. Maya had a great day and had been talking for weeks about her penguin, Waddles getting married (to another penguin named Gloria). So we pulled out the Easy Bake oven and did some "baking math" for school and she came up with this...

And here is a picture of the happy couple :)

As far as other excitement we came up with this... Who knew alcohol wipes has so many uses?

I told you.... it's not been all that exciting. Of course, the other day we walked in from therapy and Pookie was doing this... So if you've received any rouge e-mails or Skype invites from Pookie... I apologize :)

This week Maya sees endocrine, has therapies, and we are hoping to come up with something fun to do outside the house.

Thanks for checking in!

Wednesday, February 9, 2011 8:28 AM CST

We had a really long day yesterday at Children's. I was so thankful to have Maya's nurse with us and I"m not sure how we could have done it without her there. There were times she would go ahead and take Maya to her next appointment while I finished up the one we were at and vice versa. She was also able to work with the lab to get everything we needed drawn, in the right tubes, and in very little time which was nice and saved a lot of hassle from having to return today. I do admit I don't think I've had a jammed packed day like yesterday for a long, long time. Again, thankful we had Sarah with us or I'd have never had a moment to get a drink, much less eat all day.

We did finally get to see cardiology yesterday and we've got Maya on an event monitor for the next 30 days. We did her echo and EKG while we were there and too and those looked great. We saw our special needs doc too and mostly went over what we've been doing and what we've seen over the past 6 months. He did order some additional labs in hopes of finding out what is causing some of the lab trends we are seeing and maybe pinning down if they are renal or liver. She's really done so well over the past 6 months or so with the exception of a few infections so we didn't have anything to really change. We all like to adhere to the concept of not rocking the boat.

Additionally yesterday we got the results of the testing we did last week that will now help us work with Maya . Her disease has made an impact on her neurologically and trying to figure out how we can best help her has been challenging. This testing doesn't really change that, but gives her team, along with myself a better idea of the areas we can help her, where her strengths are, and how she is could best be assisted. To me, Maya's amazing and I look forward to every moment I get to be with her.

So, now that all that appointment hoping is behind us for awhile we are looking to do something a lot more fun. This past weekend Maya started working on her Valentines and we made a Valentine countdown since every morning she wakes up asking if it's Valentine's Eve yet! I decorated around her living room bed and she's busy using words like romantic (which she learned from the Charlie Brown Valentine special). I'm hoping to take her to Gnomeo and Juliet here at some point too. She was excited to hear the Packers won the Superbowl as they are her favorite "sports team". She was decked out in her gear and her pom poms most of Sunday just waiting to hear the scores when we'd check on the computer. Here are some of her EZ Bake pictures... she's becoming quite the cook!

Thanks for continuing to follow Maya's journey.

Friday, February 4, 2011 9:49 PM CST

Another week...

This week's big excitement was all the snow and wind we got. I woke up Wednesday to a five foot drift at my door. Imagine my surprise when I opened the door to go shovel and faced a wall of snow! Thankfully I'd brought the shovel in so I could shovel my way back out! Maya loved watching the snow fall outside her window and watching things disappear... like our patio set which is just starting to show again under the snow.

Mondays testing went well. We have a huge day of appointments on Tuesday this week to review those results and also meet with special needs to pull things together and address a few issues we've been having. She also sees cardiology that day. It'll be busy, but good to get some of this stuff taken care of. A lot of the testing we did was related to all the recent (over the past year) changes we've seen in her neurologically and I'm looking forward to finding out how we can better help her communicate and support those areas she struggles in and also where her strengths are so we can harness and develop those the best we can.

Maya's really looking forward to Valentine's Day. Her first question each morning is, Is it Valentine's Eve today? She's been working on making cards and has plans for baking a Valentine cake in her EZ Bake oven!

Maya's not been sleeping well and this in turn has made the past week challenging. We seem to cycle through this and it's just one of the areas that seems to have gotten worse and not better this year. Tonight she's not feeling well and I'm hoping she can get some good sleep. I know not sleeping is so hard on her "mito body" and makes everything else worse, it's a vicious circle sometimes.

She is seriously one of the funniest people I know, yet sitting here now I can't remember one funny thing she said this week. There are times she gets me laughing so hard I can't stop. This just makes her try even harder to be funny, which most of the time she succeeds at and it just continues. As you may have noticed from pictures of her she has a stuffed penguin named, Waddles. He's pretty much a part of EVERYTHING in her life and a source of much of our laughter. He's so much a part of life here that people who know us ask about him by name. Maya has a little voice she uses for him when he talks and yesterday he ended up needing a bath (in the washer). It wasn't his first bath, or his last... he goes everywhere with her and I mean everywhere. Maya wasn't so sure I should be washing him and Waddles was SURE I should NOT be washing him. I put him in the washer and then got to spend the next 20 minutes listening to muffled screams from him. Thankfully they were muffled because I'm not sure I could have explained to my neighbors why I had a screaming penguin in the wash machine nor do I think they would have believed me!

Friday, January 28, 2011 10:09 PM CST

Wow, the week flew by in a flash. Not sure why since we didn't have a whole lot going on. We had our regular routine things with therapies and music and also had an ultrasound on Monday to see if we could figure out what's going on with Maya's liver. Over the past several weeks we've seen a continued elevation of her liver enzymes and nothing else to really show us what's going on. The ultrasound provided us with very little info, but was able to rule out some of the more common things we had thought it might be. Right now the plan is to watch and wait and hopefully with time things will trend back down to where we are more comfortable. "Normal" isn't really a place we've been in a few years so we'll be happy with and acceptable range.

Maya's big love this week and actually for the past few months are those sticker mosaic pictures. She received a few boxes of them for Christmas and she just continues to make picture after picture. It's nice to find something she really likes and can be successful doing.

Last weekend we had a visitor from LaCrosse. Maya's nurse came with her kids for the day and we had a great visit. Maya was thrilled to see all of them and it was fun to reconnect.

Monday is Maya's big day of testing at Children's. It will be a long day for her as she tires quickly, but hopefully it will give us some insight on how we can best help her.

Thanks for continuing to check in.

Friday, January 21, 2011 2:21 PM CST

Wow, this has been one of those weeks! Actually it wasn't so bad, just one REALLY full day. Today should have been just as busy, but it's too cold to take her out so we rescheduled things for Monday in hopes it will at least be in the POSITIVE digits.

This week Maya's labs were less than stellar. Nothing showing infection or anything we had to attend to instantly, but rather some liver numbers showing something has changed and is going on there and a couple other things we need to check out. She also is having some issues with her HR so we'll follow that with cardiology although most likely it is secondary to her dysautonomia and nothing we can really do anything about.

Yesterday she had a couple of skin biopsies done which did not please her in the least. Unfortunately the area we needed to biopsy was on her belly which has very little 'open' space due to ostomy, tubes, etc. The area that is open is where i do her injections at night so it's fairly sensitive. They ended up taking two biopsies and then suturing them. Thankfully I had extra hands available to help or should I say extra mouths there to sing! I'm not sure the doctor had done a procedure before while being in the midst of what many times sounded like some sort of folk/broadway review as we sang everything from Annie to John Denver to Peter Paul and Mary. WE were also all treated to a tour of Maya's Rainbow Rocket Ship (something we frequently talk about as a distraction technique). Yes, the things adult will do in the name of distraction are amazing and we are blessed to have so many people in our lives willing to jump on the 'distraction wagon' with us.

Outside of all the excitement on Thursday there wasn't a lot out of the ordinary to our week. That is other than on Monday when we got snow and decided it was a good day to check out the winter weather and Maya got to bundle up for a sled ride around our complex. Because of what is needed to make going out to play happen we only do it once or twice a winter. It is about 30 minutes of prep 15 minutes of fun and another 30 minutes getting settled back in. So well worth it though.

We are looking forward to Sunday and some time with some friends from LaCrosse who are planning a visit. Then Monday we'll finish up testing at CHW we were suppose to get done today and hopefully from there come up with a plan if one is needed for dealing with these new issues.

Holly

Sunday, January 16, 2011 10:20 AM CST

I'm trying to do so many different things this year. I often struggle with what this page is anymore. What use to be a venue for information became a story of struggles and triumphs. I always try to keep it fairly benign. The fun stuff of LIVING because that's what it's really about. Every choice I make for Maya is about giving her an opportunity for LIFE, not just to sustain the body, but the heart and the soul. I never know if this is the place to put the feelings and all that goes along with her story or just a place for the concrete facts of life. This is her page and her story, not mine, but the line between her and I is a narrow one. We've had this page for over 8 years now. I think about how different life is now than 8 years ago. 8 years ago we'd just started our journey, we'd just taken our first big step in managing her illnesses and providing her with more energy. I can actually measure the years, the time by the hospital stays, surgeries, and which lines and tubes where placed when. I sometimes wonder what it would be like to instead measure the years by ballet recitals, sleepovers, and the other parts of childhood we often seem to miss. On the other hand, I can't imagine any other journey than ours or the people and moments we would have never met or experienced had it not been for this life we do live. I never want to sound as though I'd trade who we are and what we have for something different. Sure, I'd give anything for Maya to be healthy, to not struggle day to day with even little things, but that's not her story and that would not be Maya. She is Maya because of our journey and I am who I've become because of it too.

My biggest hope is that people see the joy and the strength that is my little girl. I've learned so many lessons from her and look forward to what else she has to teach me.

So beyond my ramblings our week was uneventful. Things are quieting down after a busy 6 weeks of doctor visits and appointments. We are back at a more manageable pace and can hopefully remain here for awhile. For whatever reason things always seem to fall that way. All our follow-ups get clumped together and then create more tests and follow-up appointments. My goal this year is to spread it out more and at the very least not clump everything together in December next year.

Our weeks now are pretty much routine. We do school, she has speech twice a week, music once, labs, and sees the doctor ever two weeks. I think over the next couple months other than the pediatrician bi-weekly we just have a single specialist appointment each month. Hopefully this will allow us to get on with our exploring and learning. We've not been to the museum in quite awhile and would like to go again soon. Too cold yet for the zoo, but I'd like to fit the library back into our routine too. This week though, we are anticipating a visit from a LaCrosse friend and hopefully it will work out. It's our fifth attempt with the same person and between my hospital stay and Maya's, plus a nice blizzard it's not happened. To make this happen that will mean a very low-key week. Right now she's at the 16-hour mark in her sleep... much needed. She only awoke at 4 to ask if the Packer's had won last night then returned to her slumber. (yes, she's become a Wisconsinite through and through).

Thanks for continuing to follow this journey we call our lives.... your love and support is wonderful.

Holly

Monday, January 10, 2011 4:49 PM CST

Not much going on here. Today Maya went to the dentist which was all good news. She has all her perm. teeth and no cavities! She did a great job with everything and thankfully they were very patient with her and willing to work with some of her little "mayaisms".

Last week was a blur of this and that. Speech therapy, learning, doctor appointments, and play. A good mixture, but a busy one. We did see the dermatologist and decided the best thing for her is to continue not using an occlusive dressing on her CVL. This is pretty out of the box, but is working for her so we'll go with it. She also had a few more labs to run in hoping of pulling a few issues together, but it breaks down to some sort of autoimmune issue and there really is very little we can do about it.

We've been playing lots of Wii since Christmas. I need to capture some on video as it's pretty funny to watch. She has the Disney Sing It and the Glee discs so she spends quite awhile each day performing here in the living room. Lucky for her Jet Plane is one of the songs on the disc and she can sing it to her hearts content.

Thanks for checking in on us and hopefully I'll get back in the rhythm of updates and putting some pictures on here.

Holly

Saturday, January 1, 2011 8:03 PM CST

Happy New Year!

We had a busy week and welcomed the quietness of the weekend. We watched the Muppets as we brought in the new year last night and then had a Shirley Temple movie marathon today along with cleaning up and putting the house back in order from the past several weeks.

Last week Maya had her EEG and MRI. We'll hopefully get some results this week and get some direction in helping some of the new symptoms we've been seeing. We also see dermatology again in hopes of getting Maya's skin problems under better control.

We are excited to start another year, we are working on a list of thing we want to change and do this year including a few off her list of "100 Things to do before Growing Up!"

Thanks for checking in.

Holly

Saturday, December 25, 2010 12:57 AM CST

Home and busy keeping up. A bit busier than usual post discharge since we brought her home quicker than usual due to Christmas. Spending today celebrating the birth of Christ... together.

Thursday, December 23, 2010 11:53 AM CST

Our night was fairly uneventful with the exception of her needing a few fluid boluses and some extra phos. Her phos continues to drop so we are doing more frequent labs trying to keep up with her body's need. She's also pretty anemic again so we'll transfuse her today and that should help bring her heart rate down and perk her up some. Right now her albumin is low so the fluid we are giving her is just leaking into the tissue anyhow and her little face is so puffy that her eyes are bearly open.

Her cultures did end up growing, but we don't have ID or succeptability on them yet. Hopefully tomorrow since bacteria don't take time of for the holidays. She's triple covered with antibiotics so that means a busy Mama when we return home since two of them are ever 6 hours. There were whispers of our returning home tomorrow since we are close enough to return and it's Christmas. I guess time will tell on that one. I'm not sure if we are still making all the changes we are making right now that we will go, but it was mentioned and I figure we'll go with their blessing and enjoy the weekend at home!

This is one of the biggest parts of living near by. We would have never gotten to go home with her this sick in the past.

Her sleep study isn't back yet, but the EEG has been read preliminarily and there was quite a bit of change from her previous which explains many of the changes we've seen over the past year. She's going to have an MRI on Monday to hopefully give us some more info before we follow up with neurology.

I think that's it. We are settled, little purple tree in our room with a lone ornament on it and a hair tie as a tree topper. It makes her smile... and that's what matters.

OH, contact info is updated at the bottom of the page.

Holly

Wednesday, December 22, 2010 8:41 PM CST

Maya was admitted to Children's this afternoon. Not a clear picture as to what is actually going on, but we need to get her labs improving and not going the other direction. She's NOT happy about being here so close to Christmas. We were going for a threepete at home... could still make it if she turns around quickly.

Her biggest concerns were... if Pookie would be opening her advent calendar without her, if Santa could still find her, and if I brought a blanket since, "the blankets at the hospital are so boring!"

Holly

Saturday, December 18, 2010 7:18 AM CST

After a busy week, we are glad Saturday is finally here.

Maya had a series of appointments at Children's on Tuesday and Wednesday. We were trying to make a decision regarding her CVL and figure out what is going on with it (she has a large granuloma at the exit site). There were a few ideas and one was to replace it, but because of her lack of access this was really the bottom of the list of options. We finally came up with a conservative plan which will hopefully work and we can put this chapter behind us. The biggest thing is to take the pain factor out of it for her and then it will be less of a concern.

We discussed some of the recent immune labs she'd had done and while many of them are abnormal they don't fit neatly into a named syndrome basically backing up what we already know, she's Maya and isn't going to fit some neat picture. Although sometimes names are nice since they give you a clear direction as to treatment it's just not that simple so we'll treat symptoms as we need to and know how. At this point it looks like she's need her daily neupogen long term. This helps her make the cells she needs to fight infection and stimulates their growth. (the White Blood Cells). Her body has made it's own antibiodies to kill off these cells. She'll also need to remain on her iVIG infusions ever 3 week and maybe at some point go back to ever 2 weeks.

Maya is looking forward to church tomorrow when the kids sing in church. She LOVES being a part of Sunday school and the kids morning activities at church and it's something she's not really been able to do before. This Christmas she's memorized a part of the Christmas story where the shepherds are told by the angels of Christ's birth. (Luke 2:8-14). She's also learned to sign all of the Christmas carols and has enjoyed practicing them. She often practices while playing with her little nativity. And just so you don't think it's this picturesque Christmas scene over here all the time.... some of what goes on in that stable can get quite interesting! Here are a few of the conversations I've heard this week.

Mary: Hey, where is Joseph my husband?

Angel: He's out with the cows right now, can I get you something?

Mary: No, I'll just wait for Joseph and then have the baby Jesus-Thanks!

and

"The queen of presents" came up to a wise man stating she was NOT giving her gifts to Jesus. The wise man kindly explained the gifts belonged to Jesus and much arguing ensued on the subject. Thankfully an angel swept in striking them both down to the ground yelling, "you both are making me ANGRY!" "so, just lay there and I"ll take them to Jesus.

and one of my other favorite moments...

The sheep were taking about the angels as they walked to Bethlehem and how wonderful the birth of Jesus was when one of the cows piped up and said, "What? It's Christmas? I thought we were going to a Valentine's party." This caused some discord amongst the animals and a huge knock down drag out fight ensued until one of the shepherds broke it up clearing things up for the cows and they all moved on to the stable arriving just in time for the "Jesus Parade" (for those of you long time readers you'll remember the "Jesus Parade" from years past.).

So, other than all that pesky medical stuff that keeps creeping in and interrupting life things are good here. Labs weren't so great this week so we are rechecking on Monday in hopes they will improve and we'll spend this holiday at home. We are on a roll and this would be 3 Christmas's in a row at home, and the first in our new home.

Thanks for checking in.

Holly

Saturday, December 11, 2010 11:05 AM CST

Photo and video editing at www.OneTrueMedia.com

Wow, one more day and my little girl will be 12. It is so hard to believe she's growing and isn't really "little" anymore, but rather a young lady. Twelve years ago I didn't know her at all, I didn't even know she existed. God did know though and he began to prepare a path for our meeting. I often wonder how she spent that actual birthday, or the next, and the next. Was her life celebrated, was she hugged, snuggled, cherished for the beautiful child she is inside and out? I guess I'll never know in this lifetime, but I have to believe all this was true. Maybe things weren't to the standard of what in many places is considered normal, but I've learned over the years "normal" is relative and knowing Maya now helps me know she was loved deeply or she wouldn't have the capacity to love and embrace the world and the people in her life the way she does.

Our week was filled again with therapy, learning, and one quick doctor visit. We also had a visit from some LaCrosse friends and were able to finally get to the theater and see Tangled. Maya LOVED it. So great to hear her giggle and immerse herself in the movie. I had to agree, it was really good.

Next week is even busier. There was so much I wanted to do with her this holiday season, local events and such, but it's just not happening. This month is full of several doctor appointments and other obligations. We are spending each evening watching our favorite Christmas movie and Christmas episodes from our favorite shows. We also started watching another series too. Small Wonder... I think it was 80's TV, but she loves it just as she's liked so many of the others we've shared. I so cherish those few hours each evening we spend snuggled under the "warm blanket" on the couch.

We've also been greatly blessed this week by so many people. People working to make this Birthday and Christmas even more special for her and in turn myself. Thanks to everyone who's been a part of these moments. You are all amazing.

Sunday, December 5, 2010 8:37 PM CST

So much happening this weekend. Saturday we walked a couple of blocks to take a part in this...

Those are her buddies Riley, Cade, and JD who come and hang out with us a lot.

This morning after church we played around for awhile and took her 12 year old birthday picture which is posted above.... What I was really doing was killing time so we could go celebrate with friends and do this!

and thanks to Icing Smiles... enjoyed this

Works can't do justice to the wonderful memories we made this weekend. Maya's actual birthday is next Sunday, but we had fun with our pre-birthday celebrations. Thanks for checking in as we rev up for another full week.

Holly

Thursday, December 2, 2010 8:05 PM CST

Music therapy day... I can never get enough of listening to Maya explore music and just let herself go singing and playing along with the songs. To say she loves it in an understatement. Her favorite thing to do is play the windchimes and sing.

Our week has gone smoothly. Maya is still recovering from our get together last week for Thanksgiving and sleeping most of her days away. She's been awake a few hours each day and today actually had to be up much of the day for speech and music therapies and also a doctor appointment. She's been asleep since 5 though and most likely is out for the night. Hopefully since it's been over a week she'll begin to get back to her regular routine with just a nap or two each day.

Maya's learning to sign Christmas Carols this year and it's been fun trying to learn along side her. I have to admit she's much better than I am at it and I spend most of my time just watching how natural it is for her. She's really quite expressive when she signs, but like that should be a surprise. She's never been one to hide how she feels about anything!

We've had fun too with the awesome Advent calendar one of her nurses made her. She has been so excited the past two days to check inside her tin and see what's waiting for her.

Maya has such great nurses. Not because of this, but because they care about her and take the time to really be a part of her life and accept her where she is. I've not talked about it much, but things have changed a lot over the past year and she's not where she was just a year ago. This disease likes to take things from her little by little and it's never fair... she doesn't ever say this, but I do... watching it as a mother is so hard, but to see her smile or love each bite of life she takes is my gift and I get to open it again and again. She's my strength.

We do have a fun weekend planned. Saturday is Christmas fun and Sunday birthday so check back and see what we've been up to. I'll post pictures for sure. Still so hard to believe my baby will be TWELVE! Her birthday isn't actually for another 10 days, but we are celebrating Sunday then having a Mama and Maya day together on the actual day.

Thanks for checking in!

Holly

Monday, November 29, 2010 12:41 AM CST

A day of rest... actually a weekend full of it.

Other than a quick trip to drop off the van for some much needed repair before it left us along side of the road we've been laying low. Maya's been sleeping about 16 hours a day as she tends to do after a huge outpouring of energy like she had last week (if you missed the pictures, click history for a glimpse of how we spent our Thanksgiving). When she's awake we've been snuggling on the couch watching Christmas movies and her new favorites, The Land Before Time series. All I can say is, thank goodness for Netflix and the Library!

I had to put the picture back up top of her at the library. She loves those "kids" so much as since we go to the library at least twice a week they know each other well.

Only a couple more weeks until Maya's golden birthday. Hard to believe she'll be 12 in just a few short weeks. I still think of her as the little bundle that arrived at the airport one late winter night. How enriched our lives have become since then.

Our next few days are filled with the typical busy activity of a week in our lives. School Work, Speech therapy, Music, a couple of doctor appointments and whatever else pops up as the week goes by.

Thanks for checking in on us...

Holly

Friday, November 26, 2010 10:15 PM CST

Sorry for the lack of updates. We had a really end of the week last week then my parents were here for a few days before we headed to Chicago for a few days with the family.

Maya had a great time with Papa and they worked on building a bird house. We still need to get it painted, but are looking forward to putting it outside in the spring and seeing what new neighbors we acquire. Maya loves birds so our fairy garden will be undergoing some changes next spring. We are already starting to think and plan for what we want to do.

We have our Christmas decorations up and today Maya wrote her own version of the 12 Days of Christmas which is something she did last year too. So fun to hear what she comes up with.

On the 12th Day of Christmas my Mama gave to me....
12-Hugs and Kisses
11-Puppies snuggling
10-Sticky magnets
9-Tricky games
8-Princess pillows
7-Fluffy blankets
6-Stuffed penguins
5-Cool Movies (sang very dramatically and followed with the Miss Piggy version "Ba Dum Dum Dum"
4-Silly Bands
3-New Books
2-Fun erasers
And a nighgown for my TOOSHIE!

Thursday, November 18, 2010 9:03 PM CST

Maya ended up needing to go in to be seen on Tuesday. She was having headaches along with some other issues we felt were maybe infection related. After discussing with her doctor's we are trying two weeks of IV antibiotics and then we reevaluate and if things continue as they have been go ahead with an MRI. Right now we are working on getting her happy and comfortable enough to enjoy our Thanksgiving plans with the family.

Saturday Nana and Papa will be here and then on Tuesday we are joining up with the rest of the family to celebrate Thanksgiving. Maya's so excited to see her cousin again and of course everyone else too.

Twice a week Maya has speech therapy. She loves to go and work with her therapist and it's always fun to sit back and listen to them work. Today they were working on instructions and the steps to different tasks. Maya kept stumbling over different ones until it came to how you make dinner. Her version involved.. getting in the van, driving to McDonalds, ordering french fries, and paying at the "second window". Well, you don't have to wonder what dinner is like around here anymore :)

We are wrapping up Season 2 of the Muppet Show. Next on our list is to work our way through our Christmas movies and the Christmas episodes of all the TV seasons we've already watched. That's our plan for the next month or so as we approach Christmas... can't wait to share all the fun with her.

She continues to work on her thanksgiving turkey and her list of what she's thankful for.... the list is long everything from family, nurses, doctors, friends to the earth, the sky, God and Jesus... and the things dear to her heart... pennies, magnets, spoons, caps, and her Princess bag.

Trying hard to learn from her and be thankful for the big and the small. So thankful for so many things.

Holly

Sunday, November 14, 2010 8:41 AM CST

Maya's still not been feeling well, but I'm seeing slow improvements in her energy levels so hopefully her pain control and interest in doing something other than just laying in bed will follow.

We are still watching the Muppets every night. She is in love with Miss Piggy. Last night she commented she'd like to be a Muppet, wear a rainbow tutu, carry a big stick, and tell people to "zip their lips!" Yes, that's my sweet girl... :) I think there may be a little bit of Miss PIggy in her already.

We've continued to plug along with her school work despite how she's been feeling. She finished memorizing the books of the new testament and is now working on writing about being thankful and finding something each day to put on our "turkey" that she's thankful for. So fun to see what comes to mind for her. We have so much to be thankful for it isn't hard, but always fun to see what her mind brings to the front each day.

Her CVL is still a huge issue. We see the surgeon on the 22nd again to see if he has ideas (non-surgical) we can't lose this line so it will be challenging to see what we can come up with. Right now we've had to go to no dressing on the line. Yes, my worst nightmare, but we'll see how it goes. If i can't just keep her itchy little body calm and those little fingers out of her site we'll be set. i think we came up with a good set up to keep it from getting tugged on, but so far she's not been out of bed the past few days to see how it works with her up and about. Pray this at least helps the situation as it's a risk for us to even try with all her other issues, but hopefully the right answer.

We are gearing up for Nana and Papa's visit next weekend and then a family get together right before Thanksgiving with Aunties, Uncle Mitch and her cousin. Should be fun and we are both looking forward to it. We haven't all been together since Maya was 7 so it's been 5 years since we've all been in one spot! Speaking of age..... Maya is going to be 12 on 12/12! I can't believe I've been blessed with nearly 10 years with my girl.... and to see her turn 12 after all she's gone through and we've been told is amazing. Planning lots of fun to celebrate too, but don't want to get her too excited, we've spent way to many birthday's in the hospital.

Thanks for continuing to check in...

Holly

Thursday, November 11, 2010 12:21 AM CST

First off we want to say a big thank you to all those who've served our country both past and present. So thankful to live in a country where we are free.

Maya's been off this week. Not sure what's up as her labs are OK for her and she doesn't seem to have any symptoms of an infection or anything. Mostly she's just sleepy, crabby, and processing really, really slow. She doesn't seem to be able to really complete a thought or follow through on even simple tasks. Hoping maybe it's just something viral and will pass with little more than extra sleep.

Our week has been pretty low key with her not feeling well. She did go to speech therapy on Tuesday, but didn't make it this morning. She's doing music therapy right now. I had to wake her up, but she's participating and enjoying it. I love to watch her just take in all the music and play/sing along. It's really the highlight of the week for both of us.

Our nightly TV right now is The Muppet Show which I found at the library. I found season 2 and Miss Piggy is her favorite. I actually am thinking she's a lot like Miss Piggy and that is where her fondness comes from :)

We have another little friend this week who lost her battle with mitochondrial disease this week. She was just 13. We have to continue to look for a cure, too many kids have lost their battles with this disease and yet there are still so many people who've never even heard of it.

Hope everyone has a good weekend. Oh, and thanks for all the TV ideas. I'm keeping a list so if there are any more ideas keep them coming.

Holly

Friday, November 5, 2010 8:29 AM CDT

So good to be home and able to update. I think back to two weeks ago and things were very different. We had a good week getting back into our routine of going to the library, speech, doctor appointments, labs, doing school, and music therapy.

Maya's really enjoying John Denver songs right now so in the evening sometimes we'll cruise YouTube looking for his songs. In doing so we stumbled across several Muppet Show clips and now she's in love with the Muppets. Can't say I blame her, they are pretty funny. She will just sit and watch and giggle through the clips watching them over and over. Always happy when they combine her two current favorites and John Denver appears with the Muppets. I'm hoping to find her some of the Muppet show DVD's for Christmas as we are nearing the end of her current series, Full House. So far we've watched all the episodes of the Brady Bunch, Alf, Mork and Mindy, Punky Brewster, and now Season 8 of Full House. I'm trying to think of series to try from here as this is our nightly routine. 2 episodes of whatever series we are watching and snuggling on the couch before bed. It's one of my favorite parts of the day. So fun to see her giggle and experience some of the same shows I enjoyed when I was young. If anyone has any ideas I'm hoping to figure out some more ideas for this upcoming year.

This month we are working on being aware of what we are Thankful for. We are always thankful for so many things, but writing it down and really thinking about it has been good for both of us. Each day Maya is making a "feather" for her turkey and writing what she's thankful for...I thought I'd share in each update the things she has written. So far we've just done 4 days: Friends, Family, The Earth, and Jesus.

Medically we are looking into some ways to further help her autoimmune issues. We aren't sure which direction we are going with this yet, but she's going to need some sort of immune modulator. Hopefully we can find something that agrees with her system and doesn't cause any more issues.

Thanks for checking in!

Holly

Sunday, October 31, 2010 8:16 PM CDT

Our weekend turned out nice. We were able to spend part of both days with friends which Maya and I both enjoyed. Maya enjoyed her time as Ariel at both the zoo Saturday and a neighborhood get together with friends of a friend. Friday a friend who is also a nurse came and helped out and we took Maya to her kid's school for a movie afternoon and she enjoyed seeing all the kids and visiting with them. Our nurses have been great about giving us extra help this week too and I"m so blessed to have them all.

I think one of Maya's favorite parts of the weekend was the teeth she got at the zoo. She loves her new teeth and they make her giggle uncontrollably. I love that giggle.

The zoo had huge pumpkin carvings that were amazing... this one was our favorite.

Boo at the Zoo!

With pirates!

All bundled up after the hayride...

My LIttle Mermaid

Tuesday, October 26, 2010 8:48 AM CDT

We are both home. I got out yesterday morning and we went to pick up Maya after that. She's doing great and had wonderful people taking care of her. So thankful for wonderful nurses on both of our parts.

Nothing to exciting to post. Hopefully soon we'll get back in the swing of things. I want to do something fun this weekend for Maya so she can wear her costume. The plans we had were for last Saturday so she missed them.

Thanks for the wonderful notes you sent.

Holly

Monday, October 25, 2010 0:20 AM CDT

I'm hoping to get us both home tomorrow. I will need to get discharged and go home to get a few things in order and then will run back into Milwaukee to get Maya. She's doing awesome thanks to the wonderful staff at CHW and our nurses. I miss her lots, but know she's in good hands.

It's going to take us a few days to get things in order again, but we should quickly get back in the swing of things. Thanks so much for all the support and prayers you continue to send our way.

Holly

Sunday, October 24, 2010 9:26 AM CDT

I can't say much today. I'm in the hospital. Maya's over at Children's. Please pray for Maya's safety and peace for her during the time we are apart. She's doing awesome. So thankful for the wonderful nurses who are caring for us both, for the fiends and family who are praying, and for all of you who are there cheerleading for us both.

For those who've asked. I"m at Waukesha Memorial and Maya is at Children's. I do have my cell phone and laptop.

Saturday, October 16, 2010 7:33 AM CDT

The weeks just seem to fly by. Not sure if that is good or bad. We try to capture the good moments when we can and just push through the rest of it. Medically Maya's doing OK. We are seeing some elevations in her liver numbers, nothing we haven't had before, but it's been a few years so we'll have to see what happens over a couple of weeks before we go off in search of a cause. Other than that her skin has been the big issue. She has skin breakdown all over her chest and belly that causes her a lot of discomfort. It's sometimes as though someone has just peeled a layer of skin off of her and it's just open. We've tried everything we can think of and the thought is it is some sort of autoimmune thing going on. It just doesn't happen where there is adhesive so it's hard to say what's going on.

On a much better note, she had a great time doing music therapy Thursday and got to try out a bunch of new instruments including a lighted keyboard and several handheld instruments she'd not seen before. It really is the highlight of her week and so fun to watch her relax and enjoy herself.

Friday we ventured out to Discovery World. We'd gone earlier in the summer, but hadn't gotten to spend a whole lot of time there as we were between appointments. Yesterday we set out and this being our primary reason for heading out and were able to spend as long as she could tolerate there. She's usually able to handle a couple of hours anymore and then needs to sleep. She had such a great time and even managed to explore some areas outside of her wheelchair for awhile which we all love. At one point she was so funny offering her silky to each of the fish, one by one. There was also a touch tank of rays, fish, and starfish. She really didn't like the fish or rays since they were swimming around, but the starfish she could have "pet" all day. They also have a ship replica she was able to climb around on, so we did that before heading over to the Les Paul area and exploring music and sound. Just watching her dance was worth the trip.

Challenger Ship

Touch Tank

Star Fish

Musical Learning

Needless to say she fell asleep at 4pm yesterday and is still sleeping now at almost 8 the next morning! Well worth it though. When she gets up today will be a recoup day for the most part and a trip down to the library as we are trying to go a couple times a week. Thanks for checking in!

Holly

Tuesday, October 12, 2010 9:27 PM CDT

The picture above is outside of our library. Maya made some new "friends" and spent awhile sitting there talking with them the other day.

When we moved here the library had just started construction on a new building so we were library-less for the first several months we were here. a Few weeks ago they finally opened our new library and we are loving it. The best part is it is across the street! We go at least twice a week and Maya is loving having so many movies at her disposal. It's been fun to see what book she picks out too. When we go and she's in her power chair she just motors around the children's section like she owns it. She will look at books forever trying to find just what she wants.

We've been busy with therapies and appointments, but have also been trying to take advantage of the wonderful weather this fall and spend time outside. After being stuck inside all summer it's been really nice to get out more.

Medically we've made several adjustments to her medications we use to help both her bones and her kidneys. Calcium continues to be an issue both trying to keep it in the bones where it belongs and getting her kidneys to quit trying to filter it all out. It is a balance we we are working on that right now. Hopefully labs will give us an idea tomorrow if we are moving in the right direction.

Thanks for checking in... we are planning a fun day trip on Friday if Maya's up to it. So much fun fall stuff to do.

Holly

Wednesday, October 6, 2010 2:57 PM CDT

The other day riding home from therapy I took an unplanned "shortcut". Once I realized I was not where I thought I was I decided the day was too beautiful so I just kept driving knowing I'd eventually run into a crossroad that would take me somewhere I knew so I drove. It was beautiful countryside driving with leaves in full color and farms spotting the land. I'd been thinking a couple days earlier it would be fun to let Maya get a pumpkin somewhere other than the grocery, but hadn't found a place to go yet when I happened upon this place.

It was a beautiful little family farm with a front lawn and barn full of pumpkins, colored corn, and gourds. Maya tends to stray from the traditional pumpkins and LOVES gourds. She loves the textures, the shapes, and the colors. We spent nearly an hour just examining the different sizes and shapes. She loved the bumpy ones that feel like warts and was amazed at the size of some of the pumpkins.

Since it was a weekday there was no one else around and we had all the time and room we needed. She finally settled on 3 little gourds and 3 small round pumpkins. We plan to decorate them tomorrow. She's leaning toward gluing on jewels and of course a RAINBOW pumpkin. So tomorrow we'll break out the glue and paint and get to work. I can't wait to see what she creates.

We try to end each day with a walk. She's working on a rock collection for a school project we "borrowed" from a friend of hers who is doing one for school. Figured borrowing the idea worked out great and she was able to collect some rocks on our walk the other day with her friend. Most of our walks are spent enjoying the beauty of this season. The air is changing and you can tell fall is here and winter around the corner, but with each new season we are able to begin a new season in life... another chance for change and new ideas.

We are doing lots of fall vocabulary and trying hard to learn our trees as we watch the leaves change color and fall from the trees. She won't waiver from her love of weeping Willows and birch trees, but I have to agree the weeping willows are beautiful as they tower over the river.

Our library also opened right across the parking lot. It honestly couldn't be any closer. That's a post for another day, but lets just say we are there nearly every day.

Sunday, October 3, 2010 10:17 AM CDT

Sorry for the lack of updates. It's been a rough week here on several fronts and we are looking forward to a better next week.

We did finally get to see the nephrologist and had to adjust several things in her TPN and with her medications. Maya has trouble with her kidneys doing what they are suppose to do correctly and because of her mitochondrial disease they simply don't always have enough energy to make the choice of what they need to help the body conserve and get rid of so we are left trying to help them do this job by adjusting what we can. Good news was that we found something safe for her to use for her bone health and this should be pretty simple to start.

Maya was able to spend much of Thursday and Friday with her friends. They had both days off school and their mom was her helping me so we had fun having extra friends around and watching movies and playing. It's always a change from what I'm use to with just Maya and I around and a welcome change. Maya enjoyed having more people to talk to and play with too.

Therapies are going well and for the most part Maya really enjoys going. It's not really easy to get her there all the time as she prefers to do things the same way every day, but we go and she in turn enjoys herself and works really hard. We've met many of the goals we set up at the beginning of the summer for therapy and are hoping to maybe get to cut down a bit of out time there as we are there three days a week and have more than one therapy some days.

Thanks for sticking with us and I hope everyone had a good weekend.

Holly

Monday, September 27, 2010 7:24 PM CDT

As promised, here are some new pictures of Maya! Not quite the weekend, but close :)

One of our favorite places to go is a park in another town between here and Milwaukee. It has a great walking path along the river, a garden we love, and WEEPING WILLOWS! Maya loves weeping willows so she'll always agree to a walk as long as she's going to visit her trees.

As you saw on our welcome picture... Waddles is our constant companion. She loves the little guy and I hope he survives many more trips through the washing machine, who knew a penguin could get so dirty?!

Here is another picture from one of our walks... I can't believe fall is already here.

We've been taking lots of walks as the weather is improving and Maya can tolerate being out. She loves to see what treasures are out there from nature like tiny pine cones and HUGE colored leaves. We're trying to use this fall to explore the outdoors and use it for learning about science and creation. We're hoping to take in the Frogs! exhibit soon too at the Milwaukee Museum although I'm not a big fan of frogs so we'll see how that goes :)

Thanks for checking in, we have lots of school, therapy, and a couple of doctor appointments to fit in this week before heading off for a new adventure at the end of the week... can't wait to share!

Holly

Saturday, September 25, 2010 8:38 AM CDT

We stayed busy this week and got very little done. Isn't that how it always works? Maya was well enough to make it to speech therapy on Thursday and we followed that up with a trip to the pediatrician. Things look good as far as her infection goes. We'll remain on the IV antibiotics for 2 more weeks and hopefully then those little bugs will be gone for good.

Next week we see nephrology which is one of those appointments we've waited awhile for and have a big list of questions. We are also hoping to figure out what to do about her bones while we are there as we have recommendations from the endocrine side and now we'll see what nephrology has to say. They both handle the metabolic bone issues so I'm hoping they say something similar so I know we are on the right path.

Maya's been enjoying our afternoon walks. We found a new walking path that is through an area with no homes, no roads, etc. It's so nice as you can take a long walk and if she's in her power chair she can just drive with no thoughts to crossing streets or falling off curbs (she can't judge that there is depth to a curb). On our walks we've been looking at leaves and whatever else strikes her fancy and expanding on this for her science lessons.

School is going well and seems to work out nicely. WE've been able to fit things in when she's awake and feeling well for the most part. It means we don't take the weekends off as when she has a good day we soak it for all it's worth, but learning is so fun for her and a joy to watch so it just naturally fits into our day.

This week begins music therapy! We've been trying to get this set up since we moved and are very excited about finally getting the chance to see it happen. She was getting therapy back in LaCrosse and she's (we've) really missed it.

Thanks for continuing to check in and I promise to get some updated pictures on here this weekend sometime.

Holly

Tuesday, September 21, 2010 11:01 AM CDT

We are home!

Maya's glad to be back and settling into her routine and our own beds. Things are a little busier with extra med doses since she came home on a couple of additional medications, but they can run in her TPN line so there wasn't a lot of juggling to fit things in.

We were lucky enough to have a nurse yesterday so our transition home was a lot easier than usual. Not having a 4 hour drive home and a rental car to return is helpful too.

Today is a down day then we hop right back into our busy week with labs, a doctor appointment, and therapies. We are also doing school everyday, but we do that regardless of where she is if she's up to the task. She was lucky and squeezed in some art therapy before we headed home too and a visit with the school teacher at the hospital. She LOVES the art and is planning on working more on the project she started later today. I also talked with the art therapist and came up with some more ideas for things we could do at home. I find if I mix art into whatever we are doing then she seems to retain more, same with music or anything else that helps bring more senses into the picture.

Pookie is glad to have us home too, he always gets lonely when we are gone and is happy to see us return.

Thanks for checking in!

Holly

Sunday, September 19, 2010 5:08 AM CDT

This week begins mitochondrial disease awareness week. Yes, you can think of it as just another awareness week, another awareness ribbon hanging about. But, it's what we live every day. It's a disease that when you tell someone your child or loved one has it they typically look at you with a blank stare, talk about how "rare" it must be, or pretend they didn't hear you. Well, it's not rare, before we were thrust into this world I'd never heard of it either. I also never new so many children died from a disease that many determine to be "rare". In 4 years of nursing school I'd never even heard of it yet now I was meeting people all over affected by this disease. It isn't rare, but it does come in many forms. It transforms many peoples lives. It does not care about age, or gender, or race. It likes to slowly take things from you, or in some cases, takes everything quickly... with a vengance. Some families who face it only get moments with their children, others years. There is no pattern, no rhyme, no rhythm. Ten years ago I had a child who could run unattached to tubes, wires. A child who could eat the food she loved to her hearts content. She could play with abandon outside for hours. Now, ten years later I have a child who can't take 2 steps away from a series of wires and cords that are her lifeline... a child who can't play outside unless the temperature is just right.... a child who needs a wheelchair to GET to the playgound so she has enough energy left to play for 15 minutes before she's too tired to play anymore... a child who's not had more than a taste of food at one time for more than four years. Don't get me wrong... She LIVES. She enjoys every moment. She's determined to experience every little bit of her "corner of Earth" as she calls it. She drags around her bag of IV pumps like they are a part of her, essentially they are. They carry the nutrition she needs to grow and thrive, they care the pain medication that allows her to get out of bed and take on each day with a smile, they care the medications that provide her the quality of life that carries her through the rough patches so she can sniff another flower or view another rainbow.
She has so much to teach people. She sees beauty in the smallest things, embraces people and the world with a love bigger than any I have known. She choses to LIVE every minute of every day.

Since I've met mito we've shared countless nights in PICU's and hospital rooms. We've missed weddings, birthdays, parties, even vacations. We've met so many wonderful families who've done the same. Grieved with so many families who've had to say goodbye to their precious children, more than we can count. My child learned about death not from losing a pet or someone older in her life, but she learned about death from losing a peer... a playmate. A child who she'd sat in bed with, played with, compared tubes and lines with.... and not just one friend, but multiple friends.

This disease has affected us as a family in many ways, but it's not who we are or what we are. It's a part of how we live though. Not a day goes by I don't remember this is the battle we fight, but we move forward. We wake up each day wondering what is out there to experience today. We build relationships we go on living.... we also pray for a cure, for a treatment. Most people who pass us while we are out or meet us don't realize Maya's sick. They only realize when they see her backpack and the lines attaching her to it. Most of the time, unless you look closely, her personality shines too much for you to see all the baggage.

Today we wait. We'll see what her cultures show, if anything, and take it from there. She is well covered on antibiotics and improving. Yesterday she was awake on and off. Watched a little TV (she loves PBS so we watched crocheting and Lawrence Welk :) ). Played with her silly bandz. Snuggled with her Mama. She had a good night, sleeping most of it which is what she needs most.

Thanks for checking in and don't forget to spread the word this week!

Holly

Saturday, September 18, 2010 11:41 AM CDT

She's growing gram negative rods. She doesn't act like it's a gram negative infection, but labs say otherwise so we'll move forward. Still on Vanco in addition to her gram negative coverage as she's got some skin issues that appear to be staph also. HR is down... way down so now we are no long tachy, but brady. More sleepy today, but b/p's and temps look good. Platelets have dropped more, but that's to be expected. Overall we are on the right path and it's just time. Pain seems increased so she's using her PCA a bit more too.

After my morning iced mocha and mountain dew, I too am doing better. I had to chase the Advil with something and that seemed the ticket to recover from the long night between the chair and the "parent bed" aka vinyl covered rock. We have our blankets and pillows from home so that does help though. Nothing worse than hospital blankets scratching you all night! OK, there are worse things, but they make a big improvment. One of Maya's home care nurses was also working last night and although she can't care for Maya was able to spend some time helping with Maya's requests/needs during the night so I was able to sleep. We had GREAT thunderstorms last night too which always helps me sleep.

Maya's watching crocheting on TV. Exciting, I know. It may be even more exciting than the "chair aerobic" class she watched earlier on PBS. OH, I just overheard the show and not only are they crocheting, they are crocheting for their cats! Hmmmm, quality TV, guess this is why we don't have TV at home. you'd think she'd watch Disney or Nick, but no, she likes to find the most obscure shows she can and watch those.

Not much more in the way of excitement here, right now we stay the course until her body tells us it needs something different. Hoping for a short stay and home by mid week. She's pretty sleepy still which I think is good for her to just rest and let her body do it's best to heal itself.

Thanks for continuing to check in on us.

Holly

Friday, September 17, 2010 8:51 PM CDT

Well, this isn't exactly Chicago! Instead of spending a fun-filled weekend in Chicago we are snuggly tucked into Children's, better known as Club Med. Maya hadn't felt well since she got her blood earlier in the week and had been running some temps so after a couple of day sof this we figured we should recheck labs and they pointed to some sort of infection so after a long day getting everything in order shes nestled into her bed in the PICU. It's a room we've been in before so at least it's familiar.

She did get a visit from our friends we were meeting in Chicago as they were so wonderfully kind and made the detour to Milwaukee on their way to Chicago to visit. Unfortunately we were just getting settled-in so visiting wasn't real easy, but it was so wonderful seeing them as it's been awhile. Another friend stopped by for dinner this evening so even though we are not where we intended to be this weekend we still know we are surrounded by people who care about us. We've ahd several people also pop their heads in to say "hi" since we've not been here in so long. Maya's last admission was in May and I think this may have been her longest time out of the hospital in over 5 years, possibly longer.

Tonight she's so itchy, itchy and tired. her vitals all look much better and after a big steroid dose and fluid bolus everything is settling down for her... well, except for the itching. We are thinking some sort of staff which would explain all the skin sores and itching along with the "septic-like" picture. Right now b/p's are actually on the high side which is unusual for her. It may be that at some point she lost her one b/p patch and is a little late on her one medication, but unusual as we came in with low b/p's.

We are so blessed by a team of doctor's and nurses that really care and know Maya and what she needs. Not only physically, but emotionally. So thankful for each one who not only supports her, but her Mama too through this journey.

I'll update after round in the AM, but guessing unless cultures grow something out of the ordinary this will be a quiet weekend and we'll hold the course.

I did update the contact at the bottom for those who need it.

Holly

Wednesday, September 15, 2010 10:31 PM CDT

We went in today for a couple of units of blood. Maya's be slowly becoming more anemic (I say more since she's never NOT anemic) so we decided it was time to tank her back up. The past several weeks she's been having a lot of migraines so we are hoping maybe being anemic was the cause and she'll start feeling better now that she's been transfused.

We continue busy with therapies and school. Maya's doing really well with her school work and we are falling into a rhythm of getting everything we need to get done, finished. The weather has been great and we've been walking in the afternoons. She rides in her chair and takes the camera so as soon as I upload them I'll posted her pictures so you can see our walks from her perspective.

Tonight Maya's not feeling well, I'm hoping it is just a post-transfusion sort of thing, but if something doesn't change overnight we'll be heading into the doctor tomorrow morning.

Thanks for checking in!

holly

Sunday, September 12, 2010 4:51 PM CDT

Our weekend went quickly, too quickly in fact. The highlight was our Special Need picnic this afternoon for the program we participate in at Children's. They do a really nice job providing a time for parents to meet and the kids to get to enjoy a few hours. Maya loved that they each had the chance to make a little bag and decorate it. She has an obsession with bags so she absolutely loved it. Of course, she covered it with rainbows and butterflies! They also had a wonderful face painter and she loves to have her face painted. She insisted on a rainbow with butterflies so it turned out a bit interesting, but she was pleased. There were also some Irish dancers that performed and she loved that. She loves anything dancing and add this to all the "fabulous, sparkly, very fancy" (in her words) costumes and she was enthralled.

The weathers has been really nice with fall seeming to be in full swing. Today was a bit warmer with it climbing to 80, but we've had lots of 60's and 70's which are right down her alley. Lots of walks and trips to the parks in the fall. She really loves to be outside when she's able, even if just for a walk.

Like I'd said before, we are reading "In His Steps" each night. The focus of the book is to think about how Jesus would treat someone in different situations and asks the question, "What would Jesus Do?" Well, this has not only make her think, but also provided her with a quick answer when she is asked a question she can't quite process or answer quickly or when she wants you to do something. Today on the way home she asked if I was going to clean when we got home. Her real reason for this was that when I clean she's allowed to go to bed and watch a movie which was exactly what she wanted to do. I said I wasn't sure yet if I wanted to clean, she followed with, "Well, Mama, What would Jesus do?"

Next weekend we are going to Chicago. She's really excited about, "seeing all the very tall buildings". We are going with friends from LaCrosse and it will be nice to see them again and catch up. First we'll head in on Wednesday to get a blood transfusion and tank her up a bit. She seems to be coming more anemic so hopefully this will take care of the problem and help her headaches.

Thanks for checking in,
Holly

Wednesday, September 8, 2010 10:37 PM CDT

Sorry for the delay in entries, but we've been busy enjoying our visit with my mom (Nana!). We had a great time with nice cool weather. Maya is on cloud 9 when my mom is here so she's experiencing some letdown tonight as she left this morning.

Tonight was suppose to be Maya's sleep study. Unfortunately after attempting to get this for 6 months we had to reschedule. It is for the best, but certainly not the plan or what we wanted to do. Instead we will still go in later this week and get transfused as she's just not maintaining her counts on her own. We also have therapy and another clinic appointment to round out the week.

Sunday is the picnic for the special needs program we are a part of at Children's so we are looking forward to seeing some friends again and going to that. This afternoon it was beautiful (and cool) so we did make it to the park and gathered a few leaves. Maya loves to find different leave and then come home and look them up and see what type of tree they came from.

Each night we've been reading from the children's version of "In His Steps", sort of the original WWJD. She loves it and it's opened her up to some good questions and discussion. Our other big focus this past week was rhyming. I figured out last week Maya had no idea how to rhyme! Thanks to Nana she is well on her way although its still difficult for her to pick out a rhyme if you've said it or you put her on the spot, but after a few rhymes she seems improve so we've made up lots of silly songs and poems.

Thanks for checking in!

Holly

Wednesday, September 1, 2010 1:42 PM CDT

Creating...

Maya's been in a creating mood. Creating stories, games, pictures, and occasionally new things for her penguin Waddles to do that get him in trouble.
The current story which has many variants involves a "rainbow rocketship" This rocket seems to be full of so many things she loves. full of tubs and baskets for organizing and full of all her favorites... chocolate, french fries, and Mountain Dew. The story has gotten us through many uncomfortable procedures including changing her central line dressing almost daily due to some issues we continue to have with it. Unfortunately, it's uncomfortable right now which means getting her to agree to the change is a challenge. Thankfully we have her great creativity to get us through and the rainbow rocketship continues to fly.

Learning continues daily here. She loves to use our time going back and forth to Milwaukee figuring out some of the "why's" that seem to float about. She NEEDS to know WHY there are water towers, WHY the mirror fogs up when she showers, WHY the speed limit is always changing (ands sometimes why I don't seem to be driving EXACTLY the number it tells me I should be going). She actually does present some very good questions I often have to just admit I don't know the answers too and we come home and get Mr Google to weigh in on those. She's doing a great job reading and was excited to day in radiology to find they had a new stash of books to choose from. We ended up with a book about polar bears which is great since the Polar Bear is one of the animals we tend to spend a lot of time watching when we are at the zoo.

She struggled a bit with speech therapy yesterday, we are pushing, seeing how much she can do. Using her mind is a big factor in fatigue for her, but she's doing great. Did wonderful on OT too although she needed a couple hour nap to get back on track.

Labs today. Going to wait another week to transfuse although it's on the horizon, Sleep study next week too.

Eagerly awaiting Nana's arrival this evening!

Monday, August 30, 2010 10:02 PM CDT

Another week begins, they seem to fly by.

We had a good weekend, finally making it down to the Milwaukee Art Museum which was something we've been wanting to do for awhile. The building is amazing and right on the lakefront. On Sunday's they also have an art room set up for kids to participate and create and this was a hit with all the kids (we went with friends). Maya painted and made a button as they were focusing on a fabric theme as there is a display currently at the museum of American Quilts. Maya loved all the colors and patterns in the quilts and really enjoyed seeing them.

We wrapped up our week of review last week for school and started off this week where we left off. She actually started with Speech and Physical therapy before coming home and sitting down to work. She's determined to memorize
Genesis 1 and is coming along nicely. We took our experience yesterday and worked it into our math today using patterns and mosaic to work through problems. She also latched onto some easy Sudoku using pictures and loved doing it.

She worked hard with the exception of a few interruptions by "super Waddles" :) It seems her penguin, Waddles, has donned a cape and in doing so gained some powers including the power to stop all learning :) Waddles now has a "special place" he spends time during school :)

Off to Speech and OT in the morning and then we tackle another day.

Holly

Wednesday, August 25, 2010 6:41 AM CDT

Wednesday already! We've not officially started schooling yet although I'm attempting to get i that rhythm with her. We've done a bit here and there both to break her in and to satisfy her curiosity over what to expect. She's doing great with review of skills she's already mastered and ready to move forward so move forward we will.

Sunday though was a great day, a day we took the chance to explore one of Maya's favorite places. After church we picked up her french fries and headed to the garden. To see her in a garden full of flowers is priceless. She LOVES it and would literally roll around in there if I'd let her. I had grabbed her smaller backpack when we left so she could shed a couple pumps for a few moment and just carry what can't be gone without for those precious moments. She can carry 3 pumps and their accompanying fluids, but no more. I packed her up and off she went, pushing her wheelchair for balance on the rocky path there. Once in the garden she dropped to the ground, face in the flowers taking in all they had to offer. She walked from bed to bed loving the texture, the colors, the smells. There is also a beautiful arbor there and she was so excited to see a bride getting her pictures taken. We watched for awhile and then were off again. After she tired we walked along the river. There is an area full of her favorite, "leeping lillows" It creates a little hideout of sorts under the willows and she loves it. She's a tree hugger for lack of a better phrase, wrapping her arms around the branches.

She tires quickly so she climbed back in her wheelchair for our walk and then we headed home. Our current show of choice is Full House, it's out wind down before bed and on of the only times she likes to snuggle.

Monday was busy with therapies and we tired the smaller backpack for PT. She loved the chance to check out the PT gym with the trampoline, rock wall, slides and other fun she typically only gets to see. Unfortunately she's been down for the count ever since. Not sure if it was the activity or if it is something more, but by Monday night she had started with a headache that quickly became a migraine. Pain, nausea.... even IV meds weren't doing the trick. Yesterday was better though. She still has a headache, but nausea was easily kept at bay and she was able to watch a movie, read, work on an art project. I even slipped in a bit of math.

Still concerned what is going on. We know with much energy output it's sometimes days before she can return to baseline. It's a trade off and a balance and we'd both agree it's worth it most of the time. She needs to be a kid, needs to have the freedom and opportunity to explore what's around her.

Today we'll see her pediatrician and draw labs. We'll know more what's going on after we see what those look like. Hopefully they'll be fine and she's just having some down days. She's needed me at night, sleeping close. Not her typical routine, but OK, that's why we have the set up we do for the days/nights like these.

Saturday, August 21, 2010 10:03 AM CDT

JOY! There is so much joy in and surrounding Maya. You can't help but laugh when you are with her. She demands it. She's funny and thinks life is too. While in the midst of this joy there are trials and times that don't present the opportunity for laughing or outright happiness, knowing how much she wants to laugh and enjoy life is a great motivator in returning to that state.

The past few days she's been on a roll. Everything is funny to her, everything makes her giggle. It's infectious (and embarrassing at times). We were out making our weekly garage sale rounds and I had rolled down the windows and gotten out to check things out. I was walking up a driveway and heard a voice telling me what a nice tooshie I had! It finally clicked it wasn't a stranger, but rather Maya's voice she uses for her penguin, "Waddles" (who goes everywhere with us). Nothing like being publicly humiliated by a stuffed penguin! She had me laughing so many times yesterday I decided I needed to carry a small recorder so I could remember the moments and write them down later. For whatever reason the car seems to bring it out in her.

We've also had several "fairy fights" around here. She watched Sleeping Beauty the other day and there is a scene where two of the fairies are trying to change a dress from pink to blue and vice versa. They are both doing the opposite of the other and Maya thinks its hysterical. Since she finds it so funny it means we have to relive the scene and also it it in to the context of our day as often as we can (we meaning her, lol). If I give her a choice a "fairy" seems to appear so they can go to battle over which of two things they want. Even a choice like dress or skirt and shoes or slippers. She totally confused the poor McDonald's cashier when she started in on French Fries or Coke at the drive up window.

Medically there was less to be joyful about. Maya's last scan of her bones showed she now has osteoporosis. While not expected, it's not unusual for this to be an issue with long-term TPN and some of the medications she's on. Unfortunately it's not an easy fix. We are working with her doctor's to come up with a plan to hopefully help reverse this or at least slow it down.

Thanks for checking in on us. As school begins I'm planning on also using this as a journal of our days of her learning. This means more entries as I love having a running record of what we are doing and all things seem to meld together with school, medical, life, etc.

Holly

Friday, August 13, 2010 2:08 PM CDT

Snowcones and French Fries. That's Maya's week in a nutshell. After therapy on Tuesday we headed to the State Fair to check out what all the excitement was about. It was HOT so we make a quick walk down the midway, explored the inside, A/C buildings and then made out way back home. She enjoyed seeing the fair and although we spent very little time there she loved the excitement of it. Most certainly thought it was the snow cone that was the biggest hit of the day. I'm not sure she's ever had a snow cone before and as many of you know, she's not an eater. She takes bites here and there and sips of this and that, but more than a few bites does not work with her system so she's my little taste tester with licks and sips of things that seem to appeal to her. She's pretty standard in her fare though.... french fries, potato sticks, and Mountain Dew. She is SO my girl :) Well snow cones are easy, they run right back out her drain tube so I just let her go. she only had a bit of it, but LOVED it. After our treat and some exploring I suggested another treat from the fair before returning home, but she vetoed this for her favorite, McDonalds French Fries! She always has to sort through the bag for the two longest fries and then savors them, counting each bite she takes. She's great in knowing her limits because when she's pushed beyond that the results haven't been so pretty. She's on a kick though and I've had to make 3 fry runs this week. Not that I'm complained since someone has to finish those orders of fries :)

SNOW CONES ARE SERIOUS BUSINESS!

We've talked a lot this week about her losing her friend. So hard to watch her process it all. We spend time reading of heaven too to which she asked, "will there be French Fries in heaven? She's doing OK. She's made a picture for Alex's mommy. She told me know knows she is sad and she "... can hear her crying in my heart, Did you know I can hear people cry in my heart? That's how I know they are sad." These times are so hard to process, especially when the fall so close to home. I was glad to have a nurse for Maya Wednesday as I was able to go to the funeral and see his Mom and say, "see ya later" for myself. Maya did great here with her nurse and worked on her picture for his mom.

That was about it for our week. Today Maya woke up not quite herself. Not sure what's going on, but I stated her PRN med we use when she's having these episodes and hopefully she'll wake up stronger and start feeling better by tomorrow. It's Friday of course, every medically involved kid's favorite day to throw a curve ball :) Well that and her pediatrician is out of town which is the other favorite so she's giving me the double whammy today.

We'll hang out the next few days and catch up on our movie watching and wait for her body to catch up with her mind then she'll be good to go again. She gets frustrated when her body doesn't cooperate with her.

Thanks for stopping by, I'll leave you with a picture of what I see every morning.... somebody waiting for somebody else to vacate the bed so he can take it over!

Holly

Sunday, August 8, 2010 4:56 PM CDT

On the way to church today Maya was reading her Bible. She was reading out loud since about every other word she has to spell out for me to read for her, but she loves to read the story of creation and that's what she was doing as we drove. She said, "...and God said, WOW the road is curvy and there are a LOT of crazy drivers." I chuckled and asked her if that was what it really said and she told me no, she was just talking about the road we were on and all the turning we were doing. I thought about it though and she was right, at times along the road of life there are many turns and there are times we encounter our share of 'crazy'. As she continued to read I thought there was no one I'd rather have by my side on this road than her, and the fact she frequently reads me the "instructions"? Well, that's just a bonus.

Sometimes her wisdom is profound and other times... not so much :) This week she told me it was "time we got around to having a baby." I explained that really wasn't going to happen and as much as I'd love to bring another child into our family the same way we became family the timing just isn't right. I'm not sure I convinced her since when we went to lunch today with friend she announce we are having a baby. She also asked if I'd marry her this week. Actually, she asked, "if you were little like me again would you marry me?" I tried to explain as simply as possible that, no I wouldn't, but she mumbled under her breath something about, "oh you'd marry me if I told you to marry me"

Our last week consisted of lots of activity mixed in with lots of rest. Mostly just our routine of therapies, doctor appointments, labs, and such, but we threw in a girls day with a couple of friends and did hair and nails and another trip to one of the local malls with friends for lunch and some window shopping. She really enjoyed getting out and playing with her power chair in the mall where there were lots of flat areas to spin in. Basically that's why she loves her chair. She can spin, and spin (and spin!) in circles with the chair and no one can really stop her (and besides, no matter how dizzy she gets she's not going to fall over or trip on a tube... so why not?) She did discover those little Japanese erasers that are so popular. She picked out a purple penguin and has been playing with it along with a whole menagerie of little critters from a gum ball machine. (thanks Riley!)

For those of you who've been praying, our friend took his last Earthly breath Thursday night. I've not told Maya yet, but need to. She'll ask about him next time she's inpatient as she knows thats part of the routine since they've shared many an admission together. This is a tender area for her this past year.

We are just hanging out this evening... going to watch some Alf as we do every night before bed. We've finished Mork and Mindy and eagerly await the release of season 4.

Thanks for checking in.

Holly

Thursday, August 5, 2010 10:55 AM CDT

I've been trying to write here all week. I've started several times, but writing about our week seems insignificant in the wake of what a friend of mine is experiencing. She's making decisions no parent should ever make. She's sitting at the bedside of her child, watching, praying, and waiting for a miracle. Today she sits by his side waiting for that perfect healing that only comes in meeting our Savior. She's saying goodbye. She knows now she'll be leaving the hospital without her son. They came in together and she will leave with a certain emptiness. I can't imagine gathering family together for these goodbyes. It's a place as a parent of a medically fragile child you try not to let yourself go, yet in times like this your thoughts drift into recesses of your mind they shouldn't.

You hear it often on Caringbridge, "go hug your child". You realize what a gift life is and each moment is. Our friend LIVED his life. He embraced every moment and made it count. He's left an imprint on all of those he's encountered and taught a strength that many didn't realize existed. Everyone who's met him has a story, a smile. The laughter he created was infectious.

So, we know it isn't goodbye, it's "see ya later", but for those left behind it's still heartbreaking. Please keep them in your prayers.... his mom, dad, brother and the family, friends, and nurses who have cared for him for many years.

Friday, July 30, 2010 9:31 PM CDT

4 months.

Just 4 months ago we were loading up a truck, starting on another adventure and praying we were doing the right thing. In that amount of time we've found new doctors, new therapists, new groceries, new parks and places to explore. Still though, when asked I say, "We just moved here." When giving my address I want to and often do say Holmen. We still miss our friends, the home we had for 5 years, our routine, and the comfort of 'knowing' what our days would hold. Returning a few weeks back to pick up her wheelchair was bittersweet. It was so good to see many of the people and places we'd grown use to being in our lives, but it was different, like we didn't really belong there anymore, and yet I don't feel we belong here yet either. We seem to float between what was and what will be.

All this being said, God has continued to provide for us. He placed a wonderful friendship right before me-something I'm not very good at finding on my own. Although our weeks are busy, we've been graced with nurses who accept and love Maya for who she is. He's made sure out physical and emotional needs are met and through others he's continued to encourage us on this journey. We push forward often times not knowing what's next, but trusting just the same.

In the past 4 months Maya's only needed to be hospitalized once, and then for less than a week. Maya's settled in much more quickly than anyone anticipated and frequently calls this home. A couple special people who were such a big part of her life for the past several years have made the extra effort to stay in touch and continue to maintain that connection and remain in her life. She's loved getting her mail and anticipates what she's going to write back. Although we are continuing to iron out the details of medical supplies and equipment she's not needed to go without and the new providers have been wonderful with the transition and meeting her needs including when we went on our trip. Which brings me to our wonderful opportunity to visit with my parents last week in St Louis and an opportunity for Maya to explore and learn more about the world she loves so much.

I'm so blessed when I hear her giggle, see her smile, feel the warmth of her little arms wrapped around me in a hug, or simply watch her sleep. I'm blessed in the midst of all this change a child who's known to struggle with transition I've seen a child full of courage and charisma willing to take on whatever faces her. I work each day to be more like her, facing life head on and trusting with the faith of a child.

So, as I struggle with the changes I still know we are blessed. We are gifted with each day and moment and we try to never forget that.

And of course, there are all of you. Our faithful readers, supporting us through prayer and notes of encouragement. They don't go unnoticed.

Tonight, as the four months come to a close Maya's sick. She's been sick since Sunday. Not really worse or better. Nothing hospital worthy, but miserable. Sleeping 16-20 hours a day depending on the day. Hoping this weekend will give her the chance to rest and begin recovering. Next week brings more therapies, labs, and after a week at home in bed... something fun...a chance for her to just be Maya.

Holly

Wednesday, July 28, 2010 6:56 PM CDT

Well, it was fun while it lasted.... Maya's sick. At least we are home-sick and not hospital-sick. Last night when she overhead me say she was going to go to the doctor today she asked, "will I go live at the hospital again?". It appears she has something viral so we are resting and hopefully waiting it out. The past 3 nights she had fevers and now a cough and sore throat. She did have a "sweaty nose" (runny nose), but that seems fine now, mostly a really bad sore throat and cough. Her labs were questionable as to if this is something more as her platelets are dropping as is her hgb, but that can happen with viral infections too.

We've laid low as this began on Sunday so nothing much exciting around here. She did make it to PT, OT, and Speech this week and did really well. I really liked our new OT and she seemed to 'get' Maya. So far Maya enjoys going which is nice too.

We are watching lots of Alf this week as she doesn't feel like doing much more. Strawberry Shortcake seems to be her day choice and Alf her evenings.

Thanks for checking in.

Holly

Sunday, July 25, 2010 12:34 AM CDT

We are home. Came home a day early due to a TPN issue, but had a great trip. As always is hard to leave family behind and return to "real life", but we are here and ready for a big week. Nothing like jumping right in on the return home. Therapies Monday and Tuesday, doctor appointment and labs Wednesday.

Our last couple of days we tackled the Science Center and Union Station. Neat places and I'd highly recommend St Louis as a vacation spot for anyone. So much to do and reasonable if not free entry to many things. Just looking at the pictures you can see the joy on Maya's face. She was so happy to be with her Nana and Papa again.

Make video montages at www.OneTrueMedia.com

We were greeted with a Welcome Home sign and cheers. Maya was speechless. What a fun way to return home and how wonderful to have friends who are willing to come and help unload and get things inside, make sure you are taken care of and don't need anything, and hopefully were genuinely glad to see you return :) God's always be awesome in providing for us physically and emotionally and placing good friends in our paths. For me often I just have to trip on the friendship before I realize it's there, but he makes sure i do!

Thanks for checking in.

Holly

Wednesday, July 21, 2010 10:08 PM CDT

Yesterday we headed to the Children's Magic House. It is a children's museum and althought it was really crowded we had a good time. Maya enjoyed all of the hands on things to do expecially the government section where she got to sit in the oval office and talk on the phone at the pesident's desk. She was having such a good time she didn't want to leave.

Today we headed to the Missouri Botanical Gardens and children's garden. By far one of the best things we've done. It was amazing, gorgeous, and a wonderful time. The children's gardens are totally interactive and so much fun. Maya was really worn out although she spends 98 percent of the time in her wheelchair the little bit of time she is up is hard on her energy wise. Not sure the plan for tomorrow since each day is getting harder for her. I'm sure we'll have fun though.

Tonight she has hives, not sure why. It's not the first issue we've had, but by far the most puzzling. She got some extra benedryl and hopefully they'll have faded by morning.

Thanks for checking in.

Holly

Tuesday, July 20, 2010 6:44 AM CDT

So much for daily updates! I could give you the glass half empty version of why this happened and bore you with the gritty details of the ugghh! part of our trip this far, but I'll spare you and tell you the "also honest, but the reason we put up with the yuck" part of the trip.

We made it to Springfield, IL as planned and Sunday were able to go out to find the capital building. It was beautiful. For a brief couple of years back in the 1800's it was the tallest building in the country. The grounds around the building are beautiful also, as are several of the statues in the surrounding parks. We also ventured over to the "old" capital where Lincoln would have done his work and then past the depot where he gave his parting speech to the city as he left for Washington. Monday morning we got up early (unfortunatly too early due to some hotel "issues") and went down to Lincoln's home before it go too warm outside again. The area around his home is all restored as are several of the homes on his block. They have signs listed at each house about who lived there during his time there in Springfield and how they were a part of the Lincoln's lives. Just a short ways away was the church Lincoln attended and the actual pew the family sat in at services. Both of us really enjoyed the tour although because of the heat we weren't about to complete everything. Maya had some great questions and continues to amaze me at what she remembers hearing. Several times she would bring up something we'd read about in school or before we came and how it related to what we were seeing. I think she was most impressed with the capitol as this is one of her favorite things to see no matter where we go. It was the first place she wanted to see in Springfield and was also the first place she wanted to see in Nashville last year. I can't wait to someday take her to our Nations capital. She is so impressed by the detail and structure itself and loves to "imagine" as she says all about the building and the people.

Nana and Papa caught up with us in St Louis yesterday afternoon and once Papa finished up with his work we headed out to the Arch! Maya could hardly contain herself as she's been looking forward to this for months. She just giggled as we walked up to the HUGE structure. We were able to take the ride to the top and look out the windows overlooking the city. I wasn't sure we were going to get her back down (especially as the capitol building was visible!). She laughed at how the elevator to the top was like an egg, similar to the one Mork (from Ork) used to come to Earth. She loves Mork and Mindy so it was an added bonus. By the time she got to bed last night she was exhausted. What a huge first two days and what a wonderful way for me to spend my birthday, attop the arch with my girl.

Not sure our plans for the day, but I'm sure she'll be ready to go this morning and continue to explore. I'm trying to pace her as she's had her trials the past few days. Hoping for a better day in that aspect today and she could have a break from some of what unfortuately has become the norm for her. A "feel good" day would be nice, an entire one without the moments that make you realize how far from "typical" or normal is.

Thanks for checking in and all the birthday wishes. I can't wait to share the pictures we've gotten althought it may have to wait until we return home.

Holly

Saturday, July 17, 2010 7:41 AM CDT

One day left.... that's the current countdown on Maya's calendar. Every night for the past two weeks before she goes to sleep she has me change the number for how many more days until she sees the Arch! She is so excited about our trip and getting the chance to see Nana and Papa. She hasn't seen Papa since we moved in April and Nana since May when she came for a visit. I suppose this means I should start packing. The amount of things we need to take just in regards to medical supplies is so overwhelming I find it easier to pretend it's going to take no time at all... instead of an entire day.

Our week went pretty smoothly. Therapies are taking a lot out of her. It ended up she was approved for all three therapies twice a week so we may need to cut things back as it really wiped her out. She's been fairly ataxic all week also which could be from the heat too, not sure. We did make a trip up to LaCrosse. It was a quick one, but of course we got caught in a thunderstorm. Maya was not too pleased about that one as she doesn't like rain or thunder, but we made it safe and sound. She's happy to have her wheelchair though and can't wait to try it out once the heat breaks. I plan on taking it with us on our trip which should give her lots of practice time.

Not too much else to say as I need to get to packing, hope everyone has a wonderful weekend and I'll try to update while we are gone.

Holly

Tuesday, July 13, 2010 7:46 AM CDT

All is well here. We've been busy with therapy as that finally got started this week. Took forever to get all those ducks lined up :)

Yesterday she had PT and Speech then today she has speech and OT. That will be our Monday/Tuesday every week. So thankful she got the two days of speech approved as she's clearly not done well the past few months in this area. She LOVED PT as they have an awesome facility. Although many of the things she can't do with all her tubes it's a fun place and great environment as kids are working all in different areas so she knows she's not working alone. She worked so hard she slept for hours and again slept all night :) Hopefully she'll perk up for our time there today. We go from there down to Children's then home in time to hopefully get things in order for our trip to LaCrosse tomorrow.

It's going to be a very quick trip to pick up her wheelchair, not really much time to visit like we'd like to, but she's got an appointment here Thursday AM and then we are leaving for vacation over the weekend. Whew, I'm worn out already. We are excited to get her chair and then also have an appointment there to get a few things done on the van so it can accommodate her chair. WE are hoping to have time to stop by the clinic for a few hello's, but will have to save our big visits for another time.

We are looking forward to our trip and seeing Nana and Papa again. I think we'll try to take Pookie with us... not sure how he feels about that, but it is a great adventure and what would an adventure be without the entire family? (or so I keep telling myself!)

On the medical front all is stable. We continue to have some issues with her line, seems her body isn't liking the material the line is made out of and this creates some problems. Right now I just want to baby the line and deal with it when we return. Don't rock the boat is my mantra right now.

Holly

Friday, July 9, 2010 11:39 PM CDT

Another week has flown by... such is the life of a butterfly.

Maya spent much of her week just laying low. Always takes a bit to recover from a big weekend. Well worth it though. Wednesday she did see the doctor and we ended up needing cultures of her site. The past 2 CVL's she had she seems to be rejecting or reacting to the line material itself. Cultures were negative, but showed inflammatory cells so hopefully we can baby this line along and get it to cooperate. She had her line previous to these for 3 years. The one she had changed out a couple of months ago we lost to this problem too so we don't want a repeat.

Today was her neuro appointment. We decided to add on an overnight EEG with her sleep study, but otherwise things were great and it was a quick appointment.

Tomorrow we'll walk up to the farmer's market in the AM, but are just playing it by ear. Heat is not her friend so summer is hard. Have started our countdown to vacation and she's getting really excited. We are going to Springfield, IL for a day to see Lincoln's home and then on to St Louis to meet Nana and Papa. Maya can't go a day without talking about going in the Arch.

Maya funny: Maya was watching "The Last Unicorn" tonight and said she wished she could be like the unicorn and always bring a nudist with her wherever she goes..... I had to pay a little more attention to what she was watching at that point only to realize it is a "NEWNESS" the unicorn was bringing.... not a NUDIST.

Have a great weekend!

Sunday, July 4, 2010 1:59 PM CDT

Happy 4th of July!

We've had a good weekend here. Spent yesterday with a friend working on the apartment and Maya was able to have some fun playtime with her daughter.

Then last night we went to the fireworks. If you've been reading awhile you'll remember that last year we were in the PICU post op from her colon removal and ileostomy surgery. This was most certainly a better year. She loved the fireworks except for the noise. It really bothered her for some reason and by the end of the evening she had her slippers over her ears held on by her headband. It worked though and she was much happier with the sound dulled.

Today we got up and went to a parade in a nearby town. I say this like I have some idea where I actually was, but thanks to friends who let me follow them we made it there and back in one piece. It was really warm today and hard on Maya. She loved the parade, but by the end was just whipped. Came home and hooked up some extra IV fluids and she laid down in the living room with the air on and is doing much better. She's just laying there watching a movie right now and most likely won't do much the rest of the day. Again, it's always a balancing act and getting out for some fun is part of the choices we make. We took lots of different cooling methods with us to the parade so at least she made it through and enjoyed it.

Tomorrow will be more low key. Thankfully we don't have appointments until Wednesday and Thursday so she'll get a few days at home and will be good to go by mid week. We are praying and hoping that her new wheelchair will be in this week and we can go pick it up finally. Waiting on a part for the van we need to transport it and then it'll be ready to pick up.

Thanks for continuing to check in on us. Hope everyone had a nice 4th and are enjoying the long weekend. Hoping to finish the decorating up here soon and I'll post more pictures. I think the kitchen is next!

Holly

Tuesday, June 29, 2010 7:16 AM CDT

Another week is upon us. They go so quickly. Hard to believe we've been here for nearly 3 months already. I'm still waiting for it to feel like home or at least like we did the right thing in moving here. I realize from all practical standpoints we did, just waiting for emotion to catch up.

This weekend we ventured out to a place we've discovered that Maya loves. It is a garden I've mentioned before, but holds new meaning to her now that we've watched The Secret Garden. I've never seen a kid more in love with growing things than her. She could sit and look at flowers for hours if I let her. She has to touch them, smell them, look at them, and resist a very strong urge to PICK THEM! She does well though and I'm sure if she could she'd be rolling in them :)

If the rains would quit, we'd still like to get pictures and take you on a tour of "our part of the Earth". Between the heat and the rain the outside time has been limited. I'm hoping both will hold off tomorrow as we were planning on squeezing in a trip to the zoo when we head down to Children's for an appointment. There are dinosaurs at the zoo this summer and we haven't made it to see them yet. And of course we'll have to check out the penguins and the peacocks as those are her favorites.

Still making plans for the 4th, but with Maya every day is a celebration, a holiday just gives her one more reason!

Holly

Friday, June 25, 2010 10:47 PM CDT

As promised I've finally uploaded picture of Maya's room. It is still the only room totally put together and done, but as it should be :)

We've been out a exploring again a few days this week and were able to visit Discovery World. Of course, I forgot my camera so there are no pictures, but we had a great time. Maya enjoyed the aquarium and being able to ride her chair right over the tanks. We also had a few appts at Children's and after seeing the sleep specialist she'll be having a sleep study done in August.

Not much else to say, but here's a quick tour of her room.

Her door as you enter the room

The view from her window

Thanks for checking on us.

Holly

Sunday, June 20, 2010 9:48 AM CDT

Happy Father's Day to any dad's who might be reading! Dad's are such an important part of life. I'm so thankful to have such a wonderful dad and that Maya has such a great Papa!

This week flew by. I really wish I knew of a way to slow down time, but until I do I'm just going to enjoy every moment. We had our usually trips to Children's for this and that and things looked good this week. Still one test pending, but I'm not too concerned that's going to show anything (just a monitoring thing we do each year for her bones because of the TPN).

My big project this week was working on really digging in and creating a place for us here. We are unpacked, we have a home, but it doesn't feel homey. It feels functional and our things are in it, but so are a lot of other things that have no meaning and just fill space. Functional is still necessary. I'm not sure we'll ever get away from having a cart full of supplies in the kitchen or a refrigerator in the hallway, a huge tote of supplies in the living room or even the cupboard of supplies next to her bed. But, we can make it seem like our life is not controlled or run by all this "extra" stuff it takes to get through the day. I have an awesome friend helping me out and am so thankful she's taken on helping me and motivating me to dig in and get it done. We spent countless hours both inside and out this week and have made a huge dent, but we aren't done yet. I'm so excited and can't wait to live the finished product. So, when my home/pharmacy/school/hospital is finished I'll put up some pictures to share with you.

Maya's been great this week. She has been so full of questions... not simple ones, but asking about faith and heaven. Such a sweet soul and thoughtful heart. I just wish some of that sweet, thoughtfulness would shine through on the really hard days with her :) She told me this week when we were driving in the van to the hospital that she didn't understand why God made rain because it's wet and we don't really like it. I explained to her that the rain is what makes the flowers grow, things turn green, etc. She went on to name other things that all have a purpose on Earth for growing, enriching, etc and we decided that God really does a lot to make us happy. He send flowers and rainbows, sunny days and beautiful rivers. Then..... after much though she turned to me and said, "So, I guess God must have made Kwik Trip, because it really makes you happy Mama!" (here I must explain I have a bit of a Kwik Trip addiction-for those of you back in Indiana it is like a 7-11, but better--when I moved I no longer had a Kwik Trip across the street so it's taken me awhile to locate all the ones I can stop going here and there and yes, it makes me happy!)

Another busy week ahead (aren't they all?) and "homework" before Thursday when we are planning on working on our apartment project again. I feel like I'm on Trading Spaces :)

Maya's looking forward to seeing Toy Story 3 this week too. We've watched 1 and 2 this past weekend so she's ready to go. She'd not seen them before and loved the stories. Can't wait to see if she likes the movie too.

Holly

Tuesday, June 15, 2010 10:34 PM CDT

We had a great visit with my brother and niece this weekend. It's been a couple of years since we've seen them so the visit was much too short, but we still managed to pack in lots of fun. We made a trip to the zoo, played lots of games and took a walk along the river and through town. The girls really enjoyed their time reconnecting and Maya can't wait to see her cousin again soon. There are only 3 years between the girls which is really nice.

When we were at the zoo it was PBS Kids day. Maya LOVES PBS kids so she loved seeing the characters from Sesame Street and many of the other shows. Two of her favorites were Super Why! and Clifford.

Her very favorite part of the zoo is that there are peacocks are everywhere. She will sit and call out to them and they call back to her. Cracks me up every time we go.

Our week is pretty low key this week. We have a few appointments tomorrow at children's, but nothing too exciting. Waiting for summer to show her face and this cold, rainy stuff to leave.

Hope all is well with each of you, thanks for checking in.

Holly

Thursday, June 10, 2010 11:05 PM CDT

Busy week again...

Monday Maya played with a friend while his mom and I worked on putting some plants in her fairy garden. I think once things take hold it will look really nice and her fairy things fit right in. It's fun having some outdoor space to do a little bit with.

Tuesday we had some visitors from LaCrosse was good to see them and visit for a little big before they headed on. I also enticed them with the fact there is an awesome chocolate store in town. They found it and now I think they'll be back to visit again :)

Yesterday we had appointments down at Children's and were able to take a break and go down to the museum to explore. I'd heard they had a place to be with the butterflies which was my main motivation for going. Well, I was right in thinking she'd love it. It was really neat to see them all and she really enjoyed seeing some of the varieties we've read about. We also got to see some of the dinosaur exhibits and other insects. We'll head back again when we have more time and finished checking the rest of the museum out.

Today we were again at the doctor, but it was a short visit so we had a change to go to a few garage sales on our way home. We got the game Big Trouble and had a lot of fun this afternoon playing and she got a kick out of telling me (as part of the game) "your in BIG trouble!"

We are getting excited for this weekend as my brother and niece will be here.... I'm sure we'll have fun and pictures to share.

Holly

Sunday, June 6, 2010 5:09 PM CDT

Another week gone and wondering where it went. The weeks seem to fly by here. I'm guessing because it is rare for us to have a day "off", just the two of us. We long for those days to just hang out and be together doing as we please, but enjoy the excitement and growth of the current days.

This past week was a PT eval at a wonderful facility that has a gym even I'd like to come and do therapy in... slides, trampoline, rockwall, playhouse, etc. It was pretty neat and I'm sure it will have Maya begging to go to therapy. Its the same place we are going for speech and OT so once we get things approved we'll be going over there a few times a week for all her therapies.

We also headed to Children's on Friday after a busy morning rummage saling with friends. Found some great sales and good treasures in the morning including an ipod shuffle I'd been wanting to get Maya, but couldn't justify spending the money. Brand new... couldn't have asked for more. I LOVE how God provides for both our needs AND our wants so many times when I take the time to be patient. I'm not the most patient of persons, but I'm working on it.

Our appointment at Children's went well. Maya's already having problems with her new line not healing like it should. This is much how our issues with her old line started so we are trying to be proactive and get on top of the issue to see if we can prevent a repeat. After her last line placement we realized she has very limited line access left and the need to preserve sites is even more important. We are now doing daily dressing changes with some topical medication and telfa (kind of like a non-stick gauze). Her skin is pretty sore and torn up from dressings too so we are trying different products on that too.

Today it was church then naps all around! WONDERFUL! Even Pookie curled up with us and joined in. I'm hoping to get her fairy garden finished this week and will post pictures. We have it "fairy friendly" just not finished yet. We also have a busy doctor appointment week with 3 days in a row of appointments, but then we wrap up our week with a visit from my brother. and niece.

Thanks for checking in and have a great week!

Wednesday, June 2, 2010 4:37 PM CDT

I finally found my camera cord! Now you will all be punished with scores of pictures I've taken over the past two months.

We did have a great time this past weekend just hanging around with friends and relaxing at home. We've had some warm weather lately so finding good times for Maya outside is often a challenge.

I don't have much else to say, but do have pictures to share...

Maya and her friends at the park on Memorial Day evening

Playing on the playground

A visit from Nana

A visit from Auntie Jessy

Visiting with Mandy and Bryce

Taking a nap..... oh, wait, this was a trip to the zoo

All dressed up and ready to go

Saturday, May 29, 2010 1:49 PM CDT

Picture is a old one, but fun to look back and see how much she's grown.

Things are going well here. We had another busy week with a speech eval, doctor's appointments, and life in general. Looking forward to an awesome weekend.

This morning we had a visit from Mandy and Bryce. This was Maya's respite worker and friend in LaCrosse and she and Mandy share him as their boyfriend (or so Maya says). Maya was so excited to have them visit and can't wait to see them again. Tomorrow her nurse and kids from LaCrosse are coming and we are going to the zoo for the day. Should be fun and it always great to see our friends again. I'm not even going to promise pictures, but I will be taking them so someday you will be subjected to a huge amount of pictures from the past two months. Until then you'll have to suffer with some oldies, but goodies as I've just gotten all my pictures from the time she was 4 until she was 9 on a usable format! I LOVE looking at old pictures.

We did the garage sale routine yesterday and had great fun. A few good finds, but always lots of fun. Our nurse Vikki was with us yesterday and I must admit we broke her in well!

Looking forward to enjoying the weekend before another busy week. This week is her PT eval and a few other misc things, but with both the ped and special needs docs out of town we may be doctor free for a whole week!

Thanks for checking in and have a great holiday weekend honoring those who have sacrificed so much to keep our country free.

Holly

Sunday, May 23, 2010 9:59 AM CDT

We are HOME!

Got home later on Saturday and we were welcomed by a very lonely and happy to see us Pookie. He never likes it when we are gone although he does fine and I can always tell he's been playing, eating, etc. He loves to be petted though so he always needs a good scruffing when we get home. His toys are always all over the place so he must stay entertained.

Maya's doing OK, not great, but better than she was. We are hitting this pretty hard with antibiotics right now and waiting to see if she will develop an abcess at the old line site. It is still draining and as long as it does that's good. Better the yuck come out than stay in there.

She's been in bed since we came home. She did try to lay on the couch and watch her Brady's, but after about 10 minutes she wanted to get in bed where she was much more comfortable. I have a bed for the living room too, but she'd rather be in the comfort of her room so she's laying there now listening to "Return to Pooh Corner" on her story player. (basically like books on tape).

I'm not sure the plan this week as far as follow up, I'm guessing it depends on how she continues to improve. I'm ready for some down time and a chance to clean this place up. Hoping the weather cooperates and we can get outside some too.

Thanks for continuing to check in and support us. As you've noticed I'm sure, I have decided to continue here for now. When I don't write it seems something is missing. I get so much support from this site and knowing it's our connection to so many who read the site. Many of the people here have been a part of our lives in one way or another for so long. Thanks again to all you who visit the site, pray, and/or remain a part of our team in so many ways.

Holly

Friday, May 21, 2010 7:22 AM CDT

We are not going home. Planning on staying and figuring out what exactly is growing in her blood and what if anything is growing from the draining site on her chest.

Is it only Friday? I honestly thought it had to be at least Saturday this morning. Between her surgery Tuesday, a night in the ER, and being admitted to the hospital this week is really dragging along. I'm ready for a fresh week, fresh start.

Maya's doing about the same. She continues to sleep the majority of the time and have some pain when she's awake. The pain most likely is not only the fact she had surgery, but staying on top of her PCA pump is difficult when she's sleeping. Normally she uses her "button" at least once an hour and now she's sleeping through those doses and waking up behind in her needs for pain medication.

Her chest continues to be very swollen and bruised. This line placement was clearly very traumatic both in the attempt to get something in place and then to tunnel it to a new exit site since we had to re-use the same vessel due to lack of access. Losing access can mean so many things so we are going to have a talk with the docs in the near future on where to go from here and the fight to preserve access is even more important now. Good news is the surgeon is very aware this is an issue so he's extremely careful and has placed notes all over in hopes that if he's unable to do the next line the surgeons will take his recommendations.

Right now we continue to have positive blood cultures. They don't feel the infection is in her line yet, but rather in her blood stream and circulating that way. There is good and bad to this, but it would be excellent if we could keep it out of her brand new line. I am hoping I might be able to get them to send us home with the expectation of doing daily labs and retuning if she gets worse. This was part of our reasoning for moving as we could "try" home even when we weren't sure she was ready. The supports there are in place as far as pharmacy supplies and I have a nurse every few days so I could get a break. Right now we are on 4 different IV antibiotics. 2 are given ever 6 hours and 2 are given every 8 so that is 14 additional doses a day of medication. Busy, but not impossible.

I haven't seen labs this AM or heard from the docs as rounds are later on Friday. Yesterday she was having some phos/calcium issues so hopefully that too has been corrected. We are currently getting a 24 hour urine collection too in hopes we can develop a better plan to prevent kidney stones. She's passed a few this year and is on medication to help, but may need some dose adjustments.

Thanks for checking in and I'll update if things change after rounds or we go home.

I did bring the Brady's with us so Maya got to watch one episode yesterday in the brief window she was awake and it made her very happy. Almost as happy as when she sees a station wagon and gets excited hoping to see if Mike or Carol is driving!

Holly

Thursday, May 20, 2010 7:24 AM CDT

We are inpatient. Spent the night in the ER with positive blood cultures, gram negative bugs. Too tired to type much now, but we are in the PICU and will be for the next few days. Hopefully can go home quickly.

She's very swollen and bruised from her line placement. Guessing we need to check to make sure the site is OK as it is open to drain (her old CVL site) and continuing to do so.

Will write more when I'm awake and coherent.

Holly

Tuesday, May 18, 2010 5:37 PM CDT

We are back home. It was a long day, but we avoided an admission so it's worth it. The new line was threaded through the same vessel, not ideal, but our only option at this point so she's on IV antibiotics to hopefully keep it from getting infected. We have such a good surgeon who really knows what's important and is so patient and detailed.

Maya's been slow to bounce back this afternoon, totally understandable, but not typical for her. she does have several incisions as there was more than one attempt made at placing the line and her old site had to be left open to drain so there are a lot of things that makes this more painful than her other placements.

We plan on an uneventful rest of the week, nothing too exciting until Saturday when we plan on attending an MDA event at the Madison Zoo. Should be fun and something for Maya to look forward to.

Maya wisdom of the week: I'm trying to put the same positive spin on life Maya has. On the way to the hospital today we were in bumper to bumper traffic and she got all excited looking at the long line of cars saying, "A Parade?? For me?? Yipee, I love parades"

Holly

Sunday, May 16, 2010 10:07 PM CDT

Still hanging in. Maya's scheduled for Tuesday to have her CVL replaced. We are hoping for a quick, outpatient procedure then home again. Maya's actually looking forward to having it changed out as this one is quite uncomfortable for her.

We had a wonderful visit with Nana and Auntie Jessy this week. It was fun to have them around and staying here with us instead of them needing to leave each night to return to a hotel. We went to lots of garage sales and just hung out together. Maya's favorite part was getting to watch the Brady Bunch all together each evening before she went to bed. It's her current favorite show and we are on our final season so we'll see how she takes that when we've completed them all. After Nana left she said that night, "Watching TV without Nana is like the Brady Bunch without Alice!"

Will update after her CVL placement Tuesday.

Holly

Wednesday, May 12, 2010 7:21 AM CDT

It's freezing here! Windy, rainy, and freezing. Been in the 40's and hard to believe we were in the 80's the week I moved in here.

Things are going OK. We are still having line issues, but she's on the surgery schedule for Tuesday to get a new CVL placed. Hopefully that will take care of the problem once and for all.

My mom and sister are here right now visiting. Maya's thrilled (as am I) to have them here for the week. Unfortunately there is little we can do with all the rain, but we were able to do a little shopping during Maya's nap yesterday since I had a nurse.

Not much else knew and still no camera cord. I really need to order a new one as I have so many pictures 'trapped' on my camera at this point.

Thanks for continuing to check in.

Holly

Thursday, May 6, 2010 10:37 PM CDT

Sorry for the delay, lots going on, but nothing exciting enough to write about. Just lots of appointments, unpacking (done!), and life stuff. No good excuse other than I'm trying to decide what I want to do, if anything, with this site. We've had this Caringbridge page for over 7 years now. Started it when she was 3. She's 11 now and I'm just not sure it has a purpose anymore. I love sharing my girl with people, but don't know if it's just a place for people to lurk or if there is a purpose. We get so much encouragement from the page and love all the relationships that have been formed/continued because of it, but over time it's hard to know what to do. I struggle with writing what seems like it's "caringbridge worthy" and the medical updates seem to just repeat themselves. I don't want to write about what is really going on since to hear she's spending hours sleeping each day seems pointless. The progression of her disease is such that many of the changes we see have happened over time, but when I write them they seem overnight. So much of her has changed over the past year that our reality is very day to day At the same time I hesitate to remove this page as I believe she is here to love and inspire and sometimes this is the only place left for her to do that.

So, long story... no real answer. I don't know what I'll be doing. I've considered another format. One not dedicated to being a "medical" page. I really don't know.

But, what you came here for is this:
Maya's doing an awesome job adjusting. She loves it here and we love the town we've moved to. We don't really know anyone here yet, but the ability to just walk and be out in bursts without needing to plan or drive somewhere suits her and her needs right now. We've been to the zoo (loved it!), spent hours at Children's, and continue to explore each week. We've found a church (hopefully), developed a routine, and are looking forward to a visit from Nana and Auntie Jessy next week. Nursing is awesome... things in general are settling in and becoming a part of our regular days.

I've promised pictures, but can't find my transfer device. Still looking and although I'm unpacked I can't exactly locate where anything is on a moments notice.

I will post again even if my decision is to no longer use this page.. just waiting and praying for the right next step.

Friday, April 23, 2010 8:43 PM CDT

Not quite the day we had planned, but an OK day none the less. Had a nurse today so it was spa treatment for Miss Maya while Mama took in some garage sales! Yes, this is pretty much what Friday's have always been and always will be to both of us.

After her shower and some playtime we were hoping to go out, but she had different plans and a nap was more along the lines of those plans so nap she did. We were able to take a nice walk down to the lake and look at the dam and through town before stopping by the local custard stand and heading home for yet another nap! I love how this girl thinks, now to figure out how to fit all those naps into MY schedule.

She's had chills on and off today and hasn't looked as well, but after a couple of days of wonderful giggles and energy it may just be catch up time for her body... I guess time will tell. We were able to get together with friends last night for dinner which was nice and the first visitors we've had. We were hoping to get together again this afternoon, but things didn't work as so we are hoping to see them tomorrow before they head back to LaCrosse. Sometimes Maya's body dictates what we can and can't to and short of just hanging around our place there's not much that can be done.

Over the past several months it's been more and more obvious she doesn't have what it takes to just pick up and go on a whim or for long periods of time. We've really had to back off a lot of what we do unless we plan ahead or at other times just leap at a good moment. It's a lesson in patience thats for sure and hopefully we'll continue to be surrounded by people who understand that. As much as physically she's not the little girl she was a year ago, spiritually she is very much the same little girl and that's what's most important. It's been really great too for the people who are now getting to see her outside of the hospital get to see the little girl I've always known.

The rest of our week was OK with a few trips to Children's and also to see the pediatrician and labs. We stay pretty busy which is also helping me avoid THE CONTINUED MOUND OF BOXES in my bedroom. I suppose I need to focus on tacking those, but we are just having much too much fun exploring our little corner here as we walk around town and watch it leap to life.

Holly

Tuesday, April 20, 2010 7:22 AM CDT

Yesterday was spent at Children's again. I had hoped this would slow down, but it seems we'll be heading back there again on Wednesday as well as to see the pediatrician. We learned yesterday Maya's line is going to be pulled. It's been a problem for awhile now and just seems to be getting worse so we are pulling the line and moving it to the other side. I'm not pleased that this line had such a short life, but we'll do what must be done and this has caused enough pain and trouble that it's time for it to go. So, May 11 is the big day... a birthday of sorts.

The rest of yesterday was routine. We reviewed her meds, scheduled an ultrasound, etc. Nothing too exciting and basically just some 'housework' issues that were addressed as they are each year and we were able to get on the same page again with her primary special needs doctor and decide together how we'll handle new issues now that we are closer to the hospital.

Our weekend was spent laying low. Maya really didn't feel well and seemed to need lots of extra rest. Thankfully we've decided to put her hospital bed in the living room so there are no more 'bed days' where she just stays in her room all day. When she's out here at least I can jump in bed with her in the midst of a busy day and watch a movie, read a story, or just snuggle with her and she doesn't feel as along as she would in her room. We did go to church on Sunday, it was hard as it always is when you are the new person in a community of people who've known each other for a time, but it was good to go.

Unpacking, yep, still unpacking. Ready to be finished and have a goal set for Thursday. That will be 3 weeks and plenty of time to get the work done.

Thanks for continuing to be on our team and support us on our journey. We've loved the notes and letters we've received through this change we've made.

Holly

Friday, April 16, 2010 7:36 AM CDT

I know it's been awhile since I updated.... not because we are busy or off having fun, but more unpacking and trying to settle in. It's taking longer than I had thought to get settled, but we are nearly there I suppose. We did get out to the bookstore yesterday which was nice and have been taking lots of walks. Found an awesome playground just on the other side of town and can't wait to take Maya over there to play (we just drove by it).

Wish the unpacking fairy would show up soon and finish this place off. We have had nursing 3x this week which was wonderful and our nurses are so great with Maya. So nice to have people fit right into our family and who Maya adores (and listens to most of the time too!)

We are back at Children's twice again this week. Hoping the frequency of our trips there slow down once we get everyone seen and on a schedule. It seems crazy right now as I think we've had more visits since we moved then we have in the past year.

Nothing much more exciting. Will work on getting pictures up this weekend. I had tried last night, but was going through the disc of pictures from the move and it made me too homesick to post them! Will try to get some pics up from here though.

HOlly

Sunday, April 11, 2010 11:01 AM CDT

Things are going well. Maya's having a good weekend and we continue to try to get some sort of order to things in hopes of starting the week out right. Her bedroom is finally put together and so is the livingroom. The other rooms are half done and I even organized our outside storage closet. Problem with that was it was full of INSIDE things that I forgot to bring in the day we moved so then I had more boxes to deal with, lol. It's coming along though and we're excited to get it all finished. Pookie is finally settling in to although the noises from the apartment above us seem to get to him the most. He's use to things being really quiet (with the exception of Maya that is) so it'll take some adjustment for him.

This week we are off to CHW for some appointments on two different days and have nursing a few days too. It should keep us busy again this week then hopefully things will slow down a bit. Maya's excited to start music therapy again so we are trying to get that along with the rest of her therapies lined up and we are fitting in school between it all. We were going to find a church to try today, but I seriously forgot what day it is as they are all running together with no real routine in place yet. Seems like a Friday!

Pictures will follow for sure this week as I get the rooms together, besides, I just now found my camera in a box so I can actually take some pictures.

So that's life in our corner of the world. As Maya said to me yesterday, "This part of Earth is pretty nice, different than the part of Earth we use to live on, but I like it!"

Holly

Friday, April 9, 2010 7:37 AM CDT

It's so odd to spend my days and not have all the usual routine of people in and out. Maya and I are so use to having her teachers here, seeing the doctor and all the people we know at the clinic each day and just routine and people as a part of our lives in general. It seems like forever since we've been here and we miss all those daily interactions with the people who've been such big parts of our lives. It doesn't help that it snowed yesterday and even getting out and exploring is not part of the distraction anymore.

We were busy yesterday, Maya had appointments at Children's so we were out and made our maiden voyage to CHW from our new place. So nice to not have to get up at 5 so I could leave at 6 for a 10:15 appointment. She ended up seeing ortho and we got new scripts for PT and OT. After ortho we were able to get scheduled for some testing her pediatrician had wanted. She needed an abdominal u/s to make sure there was nothing new going on causing the sudden increase in her liver enzymes. Her liver numbers are looking worse then they have in years so we want to be sure we are doing all we can to take care of any problem we might be able to treat. She also had an u/s of her line site which didn't show any problems so we had the CVL team look at it and basically her body doesn't seems to be healing and accepting this line like it should. She is getting more and more irritation at her site and drainage to the point I'm doing daily dressing changes. We are going to dress it a little different and then see surgery on Monday to get there take on things. Before we left Maya ended up getting a CT of her sinuses as she's been having chronic sore throats and some other symptoms that make it hard to really tell what we are dealing with. This seemed like the logical first step so she was able to get that squeezed in real quick while we were there.

She was so tired after that we she needed a nap just to get home. She had a good day yesterday, but needed 4-5 naps to get through. Little naps, but not the norm for her to need to sleep every couple hours. She was really active in between so I'm not sure if she was just cyclically wearing herself out.

Looks like the sun is out today, Maybe we'll get the chance to take a walk. I HAVE to get serious about this unpacking first though. So crazy. I want to finish up so I can share pictures of our new place.

Thanks to everyone who's send messages by phone, email, facebook, guestbook, etc. It's hard getting use to a new place and hearing from the people who've always been there either in spirit or person is very comforting.

Thanks for checking in and we'll update again soon (those of you who'd asked for more frequent updates should be happy with me this week!)

Holly

Tuesday, April 6, 2010 6:30 AM CDT

Went exploring for a bit yesterday. Maya likes what she refers to as her "new world". I love that we can walk virtually anywhere in town. They are building a new library.... across the street! How awesome is that? Couldn't be closer unless they just moved it into the living room! Maya's decided we'll take the camera next time so she can share the highlights of our walk with everyone. Of course, we are scheduled for thunderstorms the next several days so it may be the weekend before we get out and about again.

Thinks are settling, still lost of unpacking to do, but paths have been made and you can at least stumble from room to room. Can't wait to have things in their places and resume normal (ha! ha!) life again. The next couple of days we have doctor appointments. One at Children's and on with her new pediatrician. Today I have a nurse so hopefully some of the busy work of unpacking can get done while she has some entertainment and someone to help with meds and care. I refuse to share the mess with everyone so pictures of our place will have to wait until the unpacking is complete.

If anyone is in need of our new contact info, my e mail is unchanged and posted at the bottom of the page, just email me and I can send it. No PO box yet, so I can't post it online.

Holly

Sunday, April 4, 2010 1:05 PM CDT

All is well here. Sorry for the lack of updates, but I just got my internet going yesterday and we are surrounded by mounds of unpacking to do. Maya's doing well, she seems to like her new apartment and room and has enjoyed all her time with her "donut head" Papa and her Nana. It's been so nice to have them around both to visit with and help out with Maya and all the incidentals that go with moving into a new place. We were sad to see them leave today, but all good things must end (temporarily anyhow) and we will get to the nitty-gritty of finding new homes for all our things and settling in. This way they can come back and we can just visit without all the work we've had Papa doing.

Hopefully as things return to a new normal this week I can get some picture on and share more of our adventure with you.

Thanks again to everyone both here and in Holmen for all the help this past week. It was truly wonderful.

Hope everyone is enjoying their Easter and celebrating our Risen Lord!

Holly and Maya

Monday, March 29, 2010 3:12 PM CDT

Saturday was Maya's party and a chance for her to get to say "see ya later" and "goodbye" to a lot of people who've been a really big part of our lives. I hadn't told her about it, just that we were going to run some errand so she was really excited and had a great time visiting with her friends that were there. One of her favorite parts outside of just being surrounded by so many people she loves was receiving her book. Her respite worker and friend Mandy had made a scrapbook to help her transition that included picture, memories, inspiration, and messages from many people in her life these past 6 years and some people that are looking forward to being part of her life on our new adventure. It's in sections of "Things that Stay the Same", "Things that Change", etc. I've had to read it cover to cover several times to her and it's quickly becoming a part of our bedtime routine.

This morning was her final music therapy session with Amy. Hopefully she won't need to wait too long to get settled into music therapy down in Milwaukee as it's such a huge part of her week and has really helped with managing her pain.

After Amy this morning we went over to the school and said goodbye to all her friends. We actually went to all 3 fifth grade classes since she's been at that school since before she was in Kindergarden and knows so many of the kids. She loved seeing her class and Mrs Martin again and they all exchanged bracelets. She also had the chance to see Deb, her teacher one last time.

We then had to head up to see her doctor and drop off a song Maya had written and recorded for her. We weren't able to catch her between patients, but left it for her hoping she'd get the chance to listen to it later.

Busy, busy day. Last week was the dentist and I wanted to share a couple of pics....

and isn't this how we all feel after we've finished up at the dentist?

Tomorrow is the big day to pack the truck... and by pack I mean pack!

.

Will hopefully do one last LaCrosse update tomorrow after we pack. I've been told since we are moving I'll be held accountable for more frequent updates so stay tuned!

Holly

Thursday, March 25, 2010 10:40 PM CDT

Busy, busy, busy...

This week has been full. We started our week with a dentist appointment (still no cavities... 11 years and counting!) and music therapy.

I can't believe how much stuff we have! So many boxes. We are all packed though and our days continue to be full of lots of last minute details and "see you laters" as we don't say "goodbyes". Today we had a great time with some of the gals from the pharmacy at the hospital and in the clinic. So many people have been a part of and touched our lives these past 6 year to imagine even a week without them is so hard to do. The adjustment is going to be huge (well, for me anyway).

Tomorrow we are finally getting the van fixed and that will also be her last day of school. Our weekend is full too. Monday we are hoping to make it in to say so long to her class at school and deliver something special she's been working on for her pediatrician. Tuesday is the big day and by Thursday I'll be coming to you from our new location!

I promise I'll post pictures this weekend because you have got to see the mountains of boxes to believe them, plus we'll have some special ones to post as well, but you'll have to tune in for those!

Holly

Friday, March 19, 2010 4:17 PM CDT

Wow! Busy week trying to get ready to move and get things packed. Thanks to some wonderful friend who stopped by a couple of days this week much of the packing is completed and with their help we are hoping to finsh up early next week.

Yesterday was a school trip for Maya and we met her friends to go bowling! She loves it so it was a lot of fun and she always enjoys seeing her friend "J".

Other than that and seeing the doctor on Thursday she's been doing a lot of this...

Well, that and school work. She's had a good week of school and speech and it's so fun to see her reading coming along. She doesn't really care for math, but she really enjoys reading.

Packing is making her a little nervous, always asking to make sure her "stuff" with be coming with us. Can't say I blame her, she really does love her "stuff". She's also excited since I told her she could get a fish which she's decided to name, "Gold Dorothy".

Thanks for checking in.

Holly

Thursday, March 11, 2010 3:55 PM CST

Maya's been busy this week.

Sleeping....

(how does a girl sleep with so many sets of eyes watching her?)

Writing stories....

(and yes, she can read the entire thing back to you the same way every time)

Snuggling with her couch buddy....

(I'm not sure who enjoys it more)

And just being her goofy little self in general....

(so are the votes for nature or nuture?)

Tomorrow is Gotcha Day! 9 years since I became a Mama. Loving every minute of it. Will update this weekend about our Gotcha Day.

Holly

Monday, March 8, 2010 9:33 AM CST

I just realized I haven't been on here in a week. Sorry about that. All this packing is getting the best of me. Well, that and the fact that Maya is still not feeling that well. She's pushing forward and had been coming out to the couch each day to watch TV and do school.

Today is her music therapy and she's working on a project for saying goodbye to some special people in her life. We are doing lots of different transition things with her to help with the move. One thing her respite worker is doing is putting together a book for her which will be wonderful in both recording her memories and helping her look forward to this new adventure in her life.

Our last day here will be March 31 so it is coming up fast. Hard to believe how quickly this is all taking place. So much work to do, but I keep telling myself that in a matter of a couple of months it will all be done and we'll be settled (right?)

I promise to update some pictures this week. I have some, just not uploaded yet. We haven't done much since the hospital with how she's been feeling, but we did go see Alice in Wonderland this weekend in 3D which she loved.

Holly

Sunday, February 28, 2010 4:28 PM CST

Home. Always a good place to be. Maya's doing OK, Not great, but OK. We've been watching Masterpiece theater and Anne of Green Gables as do we many Sunday afternoons. Good resting, good girl time.

A few of you already know this, but until it was for sure I hadn't wanted to say anything. After much prayer and thought, we've decided we are going to make the move to Milwaukee. We've been here several years and developed so many relationships both personal and professional that this was a really hard decision to make and some days continues to be one I have to talk myself into. Basically we are too far from Children's and it's not in Maya's best interest when we are always having to question if she's stable enough to fly and praying that's the case as she gets so sick, so quickly. There are a lot of reasons for moving and having her closer to her specialty care is one of them. After last weeks hospital stay it is even more clear this is the right thing to do.

It's going to be a hard transition for both of us, but especially Maya as she doesn't understand all the reasons behind the move and quite honestly doesn't view herself as sick so my rational don't make sense to her. We'll be moving in on April 1 (and no, this is not an April Fools!) so there is lots to do. The logistics of moving, changing home care suppliers, IV therapy suppliers and all the other things that go with our lives is a bit overwhelming at time.

On the flip side, it's an exciting new adventure and you all know Maya and I are all for enjoying the journey so we have lots to look forward to. As always, you'll be along for the ride via this page.

Holly

Saturday, February 27, 2010 7:56 AM CST

We are heading home. I'll fill in the details later. We are still waiting to see what happens and how things go from here.

Biopsy and culture results should be back by Monday and then we can make a decision what needs to be done from there.

Holly

Thursday, February 25, 2010 8:52 PM CST

Maya's been admitted to Club Med. After coming to Milwaukee a couple of days ago for clinic visits, we ended up admitted to get to the bottom of whatever is going on with her J tube and to figure out why she's not been feeling well the past couple of weeks. They did a bunch of labs today which weren't so great, but nothing too drastic. She'll go to the OR tomorrow to be scoped both endoscopy and then they are going to try to put a scope in through her J-tube to see the cause of the bleeding and pain. I'm still wondering if there is more going on as her CRP was elevated as is her heart rate and she's been pretty sleepy today. Her liver numbers are also not where we'd like to see them so I suppose we'll know more tomorrow and go forward from there.

Prior to coming down here she'd had a pretty crummy week just not feeling well, but thankfully last weekend we were able to squeeze some fun into one of her good days and went bowling which she loved of course and even managed to beat her Mama at one of the games!

I'll update tomorrow once I know more and we are back in her room. I think she's fifth on the schedule so she most likely won't go until later in the afternoon.

Thanks for checking in on us and continuing to be a part of Maya's journey.

Thursday, February 18, 2010 4:53 PM CST

Today Maya felt well enough to go with her class to the Children's museum. She stayed for almost 2 hours and had a really good time. She came home and crashed, but that's par for the course and far worth the fun she had. By morning she'll be back to herself again. It doesn't help she thought she should get up at 3 o'clock this morning!

She loved the new exhibit "Woosh" where scarves and balls and pulled through tunnels by air.

She also was so excited to finally find a "sand box" she could play in with all her tubes as it was rubberized mulch and not actually sand or dirt.

Mostly she just enjoyed playing with her friend from school and exploring everything there was to do.

Kwik Trip

Weather Station (Maya chose the weather for Wisconsin)

The rest of our week has been pretty low key building up to this. Monday she did see the doctor and today I drew labs which were a bit off, but nothing that we can really do to much for at that point. She is neutropenic which I didn't know until we got home so now we need to be careful until her counts come up again. She's still having some blood in her urine which will hopefully clear up soon, but we are heading to Milwaukee next week for other appointments so if not we'll check into that then too.

Thanks for continuing to check on Maya and ride along on her journey.

Holly

Sunday, February 14, 2010 5:24 PM CST

Maya was very excited this morning to give me a big "kiss". A big chocolate kiss that is! She thought it was so funny that she'd kept a secret from me for Valentine's Day. On Friday she decorated Valentine cookies and has enjoyed handing those out to people too. She was included in her classes Valentine exchange and decided to save her cards to look at this morning so we spent our morning going through cards, reading Valentine stories and watching the Peanuts Valentine's Special. A nice day, we even had a surprise visitor today which made her day even more complete.

Maya had a rough week as she had a kidney stone and in the midst of dealing with that she had a bloody nose that lasted one and off for 3 days even with frequent packing until finally ENT came up with a combination of medication and a packing. Now we go back on Monday to have another treatment to her nose. She's been coughing all afternoon so I'm guessing she's bleeding again. She's bleeding really far back so sometimes it just runs down her throat instead of bleeding out. She also has an infection near her CVL. The sutures that were holding this line in rubbed a hole in the skin and this became infected so she's on heavy duty IV antibiotics to treat that also which is just something else her body didn't really need to be dealing with.

Through it all though she's been in really good spirits. An awesome week with some really great people in our lives. We've learned so much this week and are so thankful for precious friends who continue to walk this journey no matter where it takes us.

Holly

Sunday, February 7, 2010 8:34 PM CST

Been a pretty uneventful week so I'm sorry for the lack of updates. We've stayed home much of the time and Maya's been camping out on the couch during the days. She's just not up to doing much of anything. She's rediscovered PBS kids and is enjoying watching Sid the Science Kid and going on the internet with me and watching/learning about science. She has so many really good questions.

Saturday we had a Disney marathon and watched some of her Disney movies we haven't taken the time to watch in awhile. She's also been busy trying to do valentines and make me a valentine at OT last week that she gave me today. She was so excited she said she couldn't keep it hidden another day.

This week we have a trip to Milwaukee, PT, a local doctor appointment and school, Speech, and computer. She also has music therapy starting again tomorrow and she's really looking forward to it so I'm hoping she's feeling well enough to enjoy it.

Tonight we are suppose to get snow. Maya wants to get her sled out this week and go out in the snow so if it doesn't get too cold with the snow that the plan. I'll be sure to take pictures if she ventures out.

Thanks for checking in.

Holly

Sunday, January 31, 2010 5:11 PM CST

We've been enjoying our van. On Friday we had a few issues that needed fine tuned so most of the afternoon was spent at the shop with the van trying to get those ironed out and then we were back in service again. Thankfully I had some nursing that afternoon and Maya didn't need to stand around a cold, damp shop for 2 hours waiting. It's so easy now to take her out and she loves to go, even just for a ride, this from a kid who hates leaving the house for the most part. She still doesn't like to be gone for long, but sometimes just a ride in the car and getting out of the house for a little while does the soul good.

Yesterday we were able to go and pick up a DS game she's been saving for since fall. She's wanted it so badly and I really wanted her to have to save for it and earn the money to buy it herself. She was so proud going into the store and picking up the game and being able to pay for it with her own money. She'd saved from Christmas, her birthday, and a few little jobs I've given her to help out here and there. Of course, while we were there she found another game she'd like to have so she's on another mission now. I told her maybe by the time she goes through her stuff this summer we can have a garage sale and she can make enough to get it. She thought that was a such a good idea that when I went to buy groceries she told me to just wait and save my money and maybe if I worked hard, sold some of my things I don't use I could come back and get groceries this summer! Ahhh, for someone who doesn't eat except for IV I'm sure that made perfect sense! So wonderful she's catching onto ideas and concepts though.

Today we've been hanging out. Watched a wonderful, full-length, live action version of the Velveteen Rabbit together, did laundry, played a little Wii, and read lots of library books. An awesome day.

Our weeks are still filled with PT, OT, school, speech, and doctor's appointments. This all wears her out pretty good so some days are a bit difficult for her, but Praise God we are home still and plugging along. We have so many friends with similar diagnosis really struggling right now in the hospital and facing some really tough battles each day. Our prayers are with them and it makes me appreciate even more being home right now. Honestly, there are so many, more than just one or two so I'm not going to list them, but I know they'd all appreciate your prayers.

Holly

Wednesday, January 27, 2010 7:38 PM CST

Today was the big day....

Our van arrived late this morning and we were so excited. Maya could hardly wait to go outside in the freezing cold temps just to see it. She was even more excited when she saw it came like this...

She saw all of those cars and vans on the truck and thought it was pretty neat that ours came that way and they'd be hauling ole' red off on it too. Our new van is blue and Maya's excited it's my favorite color and we just went out this afternoon for a ride in it trying to figure out the ins and outs of it. It has an automatic deploying ramp ...

and lock for her wheelchair in the front seat where she likes to ride...

She can also ride in the middle if there is another passenger with us which is a nice feature.

Most of all I want to say thank you again to so many of you who made this possible. I could not have done this alone, but the people in our lives are so wonderful and helped make this a happen. There isn't room here to list all the people who make sure I don't have to do this alone and I wouldn't want to leave anyone out, but you all know who you are and we appreciate it so much. Our lives are so blessed and made easier because of each of you.

Because we got the van today Maya dubbed it "Friendship Day". She was so happy, said it was the best "Friendship Day" ever. I think she's on to something. It really was friendship day, the result of so many friendships...

Holly

Sunday, January 24, 2010 8:18 AM CST

Again we had a rather guarded week. Thinks are OK, just taking them slow and steady and day by day. Yesterday we finally did have a good day and it was wonderful to see her smiley and giggling again. Hopefully the trend will continue for awhile.

Yesterday she did have the delight of attending her first friend birthday party. she was so excited and had a wonderful time. It was a dance party at a local dance studio. She really enjoyed herself and the little girl whose party it was was so gracious. Seeing the huge grin on her face was priceless.

Today is recovery day from yesterday, but well worth it.

Other than that she spent much of the week on the couch with school or just resting. She's still loving all her new DS games she got for Christmas so we've been careful to make sure there is more to life than playing her DS, LOL. We've had some wonderful Mork and Mindy snuggle sessions and the giggles that show brings out of her are wonderful to hear. I think we've zoomed through season 2 in just a couple of weeks and that's with her having to watch the "Mork in Wonderland" episode over... and over...and over.

We'll have big news Wednesday so you'll have to come back to see our BIG surprise. We are both so excited and can't wait to share with everyone. I'm never good with secrets, but this one's been awhile in the making and can't wait to share.

Thanks for checking in and have a great week....

Holly

Saturday, January 16, 2010 7:53 PM CST

Sorry for the lack of updates. Things haven't been so great here. We are hanging in, but many days have been long and difficult. Today was one of her better days, she spent it laying in bed watching movies. In between the multiple things that needed to get done today she let me sneak in some snuggle time and a movie with her. I'm learning to cherish the times she lets me do that.

This past week was also busy with evaluations and assessments from different people involved with her schooling as her IEP is this week. We both have OT and a possible trip to Milwaukee mid week. There is also another MD appointment slipped in there and a few other things. So glad the weather has been cooperating and getting out is much easier.

Holly

Sunday, January 10, 2010 9:10 AM CST

After spending part of last week in Milwaukee we are glad to be home and trying to stay warm amidst the cold of winter. Our trip went well and all her appointments were as expected. She does need some further testing for her endocrine appointment, but we'll get that over the next few weeks. Most of it is just to monitor her bones and density. With her being TPN dependent and having issues with calcium and phosphorus we have to really watch her bone density as there is an increased risk of osteopenia. Her hearing test showed things are the same as last year and the orthopedic wants to try 3 more months of therapy before doing anything further with her shoulder. We had a few other things squeezed in there too, but overall it was really successful and not too exciting (other than the weather and several inches of snow!)

Maya is thrilled to be home and settled in. She isn't a big fan of leaving her nest anymore. Loves to be home and gets a bit stressed when we are out about. She does fine with appointments and all, just is very happy to return home and is much happier and easier to deal with here. Now... to get her to start sleeping!
She hasn't slept much in several nights, it gets weary after awhile.

We have another full week with therapies, her teacher, music, and a doctor's appointment. Thanks to some wonderfully generous people we lots of new books and some new art projects to keep us busy too. Thanks to everyone who's sent things for Christmas and her Birthday. Our art cupboards were bare and now we are restocked and ready to create for another year!

Thanks for continuing to check on us and pray for us on our journey.

Holly

Thursday, January 7, 2010 8:54 AM CST

It's been a bit of a struggle this week, but Maya continues to push through and we've been able to remain home. Not sure what's going on, but her pain seems to be more out of control than it has been in several months, this in turn makes sleep at a premium as she's up several times each night. Finally got her comfy this morning and she's snuggled up on the couch watching Hi-5 on TV.

Maya's still loving all her new Christmas things and has been well entertained. One of her favorite things was her Snuggie. If you know her she's usually covered by 3-4 blankets at any given time so a Snuggie was right up her alley.

We are loving the fresh falling snow this morning, makes things look so peaceful and clean again. Brightens the day, now if we could add a little sun to the mixture we'd be all set.

Hope everyone is staying warm and safe as winter seems to have really set in lately. Thanks for checking in and supporting us on our journey.

Holly

Sunday, January 3, 2010 11:54 AM CST

I was trying to wait until I had some pictures to share too, but decided to go ahead and update anyway and do pictures later. Maya's been doing ok. She had a great New Years and we went to see the new Chipmunks movie. She really liked it and had a lot of fun with her friend Megan. Afterward we went to the mall and she got a new pair of moccasin boots we've been admiring from Gap. So glad we waited as not only were they now half off they were another 25ff of that for New Years! Yea Us!

The past couple days have been a bit quieter with her trying to recover from Friday and pretty much laying around. Her pain has been a bit more out of control than it was the days prior, but we're just supporting her with meds, hot packs, and distraction and riding it through the best we can. Thursday and Friday this week we return to Children's for several appointment and can hopefully get her shoulder looked at too as she dislocated it last week and isn't moving it quite right. I'm dreading the winter drive, but looking forward to getting some questions answered and starting out the new year with some positive changes.

Maya's not too thrilled school starts back again this week, but is very excited she starts back with her music therapy (Hopefully-her therapist had surgery so we are praying for her quick and pain-free recovery). She also has OT this week and speech so it will be a full week once again. I'm sure we'll do labs at least once as her phos is still bouncing about a bit and always takes awhile to stabilize after a big infection. She'll be off antibiotics as of tomorrow which will be nice for me and give me a few extra hours in my day to work with. Right now I'm in the midst of finding homes for Christmas presents and finding room to store all the decorations I'm only just now taking down. Feels good to get things cleaned back up though and move forward with the new year.

Hope everyone had a wonderful and safe New Year! Thanks for checking in!

Holly

Wednesday, December 30, 2009 4:06 PM CST

Maya's doing really well. Today she had PT which was the first time she's been out since leaving the hospital. On the way home we stopped by Target to use her gift card she's had since her birthday. Her biggest concern was that she could get the gift card back when it was used. She LOVES the gift cards. If anyone has any used gift cards instead of throwing them away she'd love it if you sent them our way. Just put an "X" on the back so we know they are used. She loves them from anywhere. The address is at the bottom of the page.

She spent much of her day laughing. EVERYTHING made her laugh including...

-I looked at her
-I said the word "butt"
-Snoopy as the Red Barron
-I ordered a "Mr Pibb"
-I asked her if I should go to Fazoli's for a Submarino (followed by hysterical laughter) or to Burracho's (more hysterical laughter)
-I wrote her name in the snow with her wheelchair (while she was in it)
-I argued the merits of being a Boilermaker (Go Purdue!) over a Badger (she's a Wisconsin fan). Just the word Boilermaker sets her off into hysterics.
-I refused to look at her
-I attempted to speak Spanish
-I asked her why she felt the need to SPIT in my straw before I used it (she was trying to blow the paper off the end of it unsuccessfully).

Pretty much life in general makes her laugh. I LOVE it. So good to have her feeling good and interacting with the world again.

Holly

Saturday, December 26, 2009 8:35 PM CST

I hope everyone had a nice Christmas. We are still digging out from the mess in our living room, but doing well.

I was woken by several different versions of "Happy Birthday Baby Jesus" on Christmas morning so we sang and celebrated before opening up her gifts. One of her favorite things was the Barbie and the Three Musketeers movie. She loved it and immediately felt the need for a cape, sword, and hat!

She also loves her Zhu Zhu pets and pretty much everything else too. We spent today busy playing games, watching movies, and just snuggling on the couch with Pookie.

Thursday, December 24, 2009 12:21 AM CST

We had a visitor this morning. Needless to say one little girl was trembling when she saw who it was. So wonderful to be cared for and know how much people care about her. We were greatly blessed by "her guys" from the fire department who arrived with Santa in the fire truck. She got a keyboard among other things on her list and is still trying to figure out how Santa knew to get her "just what she wanted". She's very busy composing and recording music this morning and LOVING it. Is a nice distracter from the huge amounts of pain we are dealing with right now. Sleep is not plentiful here, but lots of distractions during the holidays so that's helping.

After seeing her presents and visiting with Santa today she told me that now she can use tomorrow to celebrate Jesus birthday. So happy she remembers what is most important and still believes in the magic, but at the same time knows it's Jesus birthday and that's the most important part of the season. We've got plans for a little party for Jesus tomorrow morning complete with Happy birthday and candles to blow out.

I need to get back to the "concert" that is currently taking place on the couch next to me. We pray you each have a Merry Christmas and blessed holiday weekend. Thanks so much for being a part of our journey and I promise more pictures throughout the weekend.

Holly

Tuesday, December 22, 2009 7:55 PM CST

We are HOME!

Sunday, December 20, 2009 9:39 AM CST

Moving forward...

This morning started with a bad pain episode, but since then things seem to be moving along and improving. Some concerning changes in her labs today, but we'll just watch and see what they do. She was running very low heart rates last night, but now this morning they are on the faster side so I'm guessing it is just her bodies inability to regulate this function well as everything else checked out and looked ok.

Yesterday she did receive blood and that seemed to help things and we are continuing along with all 3 antibiotics although I suspect that to be dropped down to two fairly soon. No rounds yet today so I'm not sure of the plan, but I'd guess home Tuesday or Wednesday.

Thanks for continuing to check in on us.

Holly

Friday, December 18, 2009 10:00 PM CST

Maya's doing OK. She's stable and although she's sleepy she seems to be improving a bit. Today she was able to wake up enough to talk to us for awhile and to her doctors.

No more temps since we've been here and her heart rate has slowed down. Blood pressures are good. Now if we could get her labs to cooperate too we'd be all set. She's going to need blood tomorrow and continues to need quite a bit of extra electrolytes from her norm. Basically we are supporting her through this until her antibiotics kick in. She ended up with positive blood cultures from the first two sets we drew so hopefully we can get some negative cultures and narrow down our drug coverage in the next few days.

The top picture is from last week when we made her gingerbread house, thank goodness we finished it up last week.

Holly

Thursday, December 17, 2009 6:24 PM CST

Club Med. Not really my idea of a pre-Christmas vacation, but maybe we'll get lucky and make it home soon than later.

Surgery has been up to look since she's had quite a bit of belly pain. Right now they will watch and wait. Critical Care is following as they are thinking some sort of sepsis/bacterimia. Platelets have dropped, hgb dropped, and her electrolytes are pretty much not at all where they usually are.

She overall is doing ok. Very, very sleepy and a bit cranky, but can't really blame her. Fevers haven't been too bad, during the night more in the 102's, but now pretty much normal as are the other vitals other than her b/p's. We'll see what tonight brings and update again tomorrow.

I've updated her contact info on the bottom of the page.

Thanks for checking in.

Tuesday, December 15, 2009 7:52 AM CST

Maya wanted to thank you all for the birthday wishes. She really had a wonderful weekend.

Yesterday wasn't such a great day as far as her tummy went, but she pushed on. We were suppose to be at the fire department early in the afternoon and I hadn't told her why. As usually she was excited to go and see her "guys" and even more excited when she received this...

They are always so wonderful and patient with her. Letting her look at the trucks over and over each time she goes there. Listening to her stories and songs and just treating her like a regular kid. Thanks guys!

Our friends from MDA were there also to present the plaque.

She also had an impromptu magic show which she loved and is still talking about.

I had forgotten to mention on the birthday post too how special it was to her to receive this message her class at school.

Sunday, December 13, 2009 9:37 AM CST

Maya had a wonderful birthday. She was thrilled when she woke up and realized she was ELEVEN! She couldn't wait to get up and come out into the living room and see what awaited her.

Her morning started with a Skype call from Nana and Papa. They were able to watch her open her gifts and sing Happy Birthday to her! She had so much fun sharing this part of the morning with them.

We took a couple of her friends to see the movie, Princess and the Frog then came back for ice cream and cake. Maya had so much fun and was thrilled when yet more people stopped by to give birthday greetings. Thanks to everyone who made her day so special. She also received several birthday calls wishing her a happy birthday.

To top off the night we went and rode through the lights display down at the park. There are so many lights it's amazing. They also do a live nativity which was really neat to see. So wonderful to put her to bed hearing, "night mama, this was the best birthday ever!"

Holly

Wednesday, December 9, 2009 11:44 AM CST

I've been trying to update for two day's, but I can't get pictures to upload to the server so I'll put some on the photo page, just click the photo button at the top to see the new pics.

Maya's been keeping busy. We've been working on her gingerbread house and plan to have it finished up today. I'll be sure to take a picture of the finished product. She's really had a good time working on it, but is a bit of a frosting fiend and I had to tell her the frosting was glue to keep her from eating it. Frosting and her do NOT agree at all.

She had music therapy again this week and loved it. She can't get enough music and got to play the q-chord again which she had a chance to do in the hospital several months ago and enjoys a lot.

The highlight of the week was when she got an early birthday gift. Her Papa made her an easel and she has been Little Miss Artist since she received it. One side is a magnetic, dry erase board and the other side is for painting. Anyone who knows Maya and paint knows how entranced she's been with this.

Big news of the week is all the snow we got last night. We are at 15 inches and counting here. It's windy too so some of the drifts are quite deep as I discovered heading out to clean off the car this morning. It's really pretty though and since I have nowhere to be (most things are closed anyhow) we are just settled in and enjoying it.

Tomorrow we'll dig out and head to the doctor for labs and such. She's having some problems with her ostomy that hopefully we can figure out without too much trouble and keep on this nice roll her at home and cruise through her birthday and Christmas.

Staying warm in Wisconsin!

Holly

Wednesday, December 2, 2009 5:07 PM CST

Can you believe it? Two entries in one week! Maya's not slept all week so I've got some time on my hands, I'm tired, but trying to stay busy to keep my mind off of it. The good news is she's feeling well and enjoying all the Christmas activities that go with this month. Monday she made a tree and decorated it then we started our advent calendar. We've also been reading Christmas stories each night and switched over to Christmas movies. I'd say it's getting old, but it's fun to watch her so excited and it's only a month so we keep on truckin.

Today we had haircuts. I had planned to have about a foot of hers cut and bring it up to her shoulders, but chickened out and went with 6 inches. It should be easier to care for now.

After haircuts we were off to PT where she LOVES to be. She worked on baskets, catch with her feet, and using the swing and weighted blanket. Of course she got nice and stretched out and a good work out too.

She still has a doctor appointment this week and music therapy which she's really anticipating. Fit school and speech in there and she's staying quite busy.

We've had our ups and downs with her pain and some new GI symptoms, but nothing we can continue to work on here at home and with some extra fluids. Her birthday countdown continues too, only 10 days left! First thing each morning she has me change the number on her magic erase board so she knows where we are in the countdown.

Saturday, November 28, 2009 8:35 PM CST

Today Maya and I went to her nurse's house and we worked on Christmas cookies. She enjoyed the chance to use the icing bag to pipe icing on the gingerbread men for the first time and had a wonderful day with her friend Aubrey. She loves going there and spending time playing with her friend and hasn't had much of a chance to lately so it was such a nice day.

Aubrey also has hermit crabs and Maya had the chance to hold one. She's still not sure what she thinks about it...

... I'm pretty sure she'll be sticking with her kitty after that experience. She's not much for new sensory experiences.

On Thanksgiving we watched the Peanuts Thanksgiving special about the Mayflower voyage and also watched the Barbie version of Christmas Carol. Earlier in the week we'd gone to the theater to see Christmas Carol which she loved and it was fun to see some other versions of the story so we've been finding them online this week and watching different versions.

We also made a big list of what we are thankful for and cut it into strips to make a chain with enough rungs so she can tear one off each day from now until Christmas.

Between counting down to her birthday and Christmas she's a busy girl!

Thanks for checking on us!

Holly

Sunday, November 22, 2009 2:33 PM CST

Wow! I am not doing a very good job keeping up with these entries. I guess that can be taken to mean that there is nothing too exciting happening here and all is fairly well.

Thursday Maya's labs continued to take a dip and we did transfuse her. She got PRBC's (blood) that afternoon in hopes she'd perk up a bit and enjoy more of her day's. Can't say I see a huge difference, but I'm not sure either we gave her enough to really bring her up. She still wasn't into the normal level after we transfused so we'll see where she is this week and go from there.

Last night was a very long night. She was up all night with abdominal pain like she's not really had since her ileostomy surgery last spring. Not sure what brought this about, but I"m guessing she's obstructed as we are going on day two with no ostomy output. Her bili is also clearly elevated as evident by just looking at her. She's happy though laying in bed drifting in and out of sleep and watching movies, that is when we have her pain adequately under control which took all night to achieve. We'll chase her with fluids today and see where things end up tomorrow.

I'm hoping by tomorrow she at least feels some better as it's her first day to begin music therapy. We've recently been blessed by finding someone who does music therapy in the home and Maya is so excited to start receiving this. The therapist currently works with other kids in the area too and is going to help us with pain management too and using music to help in this area.

Our Christmas things are up and yesterday Maya got an early Birthday gift from a friend, Frosty the Snowman that sings and lights up when you take his hat off. He was from Build a Bear and she always loves Build a Bear!

I do promise a post this week with pictures so stay tuned. I just have to find a minute to get things uploaded.

Holly

Sunday, November 15, 2009 6:09 PM CST

Sorry for the lack of updates. I hope everyone had a chance to see the slideshow at least since I failed to updated for so long. We really have done nothing and have only left the house to see the doctor so there is little to say. Maya's had a very quiet week resting and trying to gain some strength. Today was a great day. She's been up since 2pm and it's 6pm now and she's still up and looking at books here on the couch. Usually she's begging to get back in bed by this time.

Anyhow, today we pulled out our Christmas things. Last year they stayed packed away with the exception of a little pink tree I'd picked up at a rummage sale. She typically spends part of the holiday season in the hospital and if I don't get things up we are either running out of time or in the hospital over the holiday and the things never get out and up. So, I decided that this year, with 40 days to go (she's counting) we'd get things out so she can enjoy them and soak in the spirit as long as she can. She's been singing and writing her own version of the 12 days of Christmas all day and playing "Nativity". She loves to be the voice of the angel Gabriel and make proclamations. Like that should surprise anyone who knows her-LOL! Some of you may remember the "Jesus Parade" from years past, well this year Jesus spoke up and told those in line that Mary would like a few gifts too, after all, "she's the Mama!"

I love to watch the stories she comes up with. Always combining the thoughts she's been thinking with the stories she's been taught from the Bible and the other traditions handed down. I could watch her for hours.... and I plan to. And trust me, there will be video... and pictures. After all, we have 40 days ahead of us! In all of this we are not forgetting to be thankful, just the actual Thanksgiving day isn't much of a celebrating day for us as she doesn't eat and we are so far from family it is more of a french fries and movies day for us. We of course are thankful, but we work on making a point of being thankful each and every day, especially in this season of the holidays.

We head to Milwaukee Tuesday, therapy at some point this week and peds on Thursday. Labs on Monday and Thursday and School, Speech, and such fit in there too. Busy weeks...Lazy weekends.

Holly

Saturday, November 7, 2009 10:42 PM CST

Today turned out to be a beautiful day so we took advantage and went outside for a bit. It was nice to be out and see the sun again. Maya had fun hitting the ball and playing ball with her hula hoop.

The rest of the day we spent watching a movie and crafting. Maya's been into making crafts again and watching movies with mom and it's been nice to have her more interactive and wanting to do things again. We did make our rainbow turkey the other day which made her very happy.

Medically things are going ok. She did well in PT this week although after 30 minutes she needs to come home and nap. Her endurance is just not there anymore. She loves it while she's busy playing though! Her line site is finally improving so I think it's finally settling in and accepting her new line.

Enjoy the new pics!

Make video montages at www.OneTrueMedia.com

Wednesday, November 4, 2009 10:11 PM CST

Not too much to add since the weekend. We are laying low due to all the bugs out there and having lots of quiet time as she's not quite up to her usual level of activity yet. We've been watching lots of movies and working on school. Most of the day is spent on the couch, curled up under our blankets with stacks of books between us.... Pookie curled up by our feet.... and SO MANY STICKERS! For those of you who were around about 5 years ago you might remember the sticker mayhem... well, it's back. We are sticking dozens of stickers to books a day. She's also methodically working her way through our Disney movies which is nice since usually she refuses to watch them. Those with a bit of either Mork and Mindy and/or Laverne and Shirley mixed in. Love the giggles that come from those shows.

Labs on Monday looked ok. We are continuing IV antibiotics and the extra Tamiflu. We'll check her labs tomorrow and also get her in to PT to see if there is anything else we can do to keep her stable when she's up and walking and get her comfortable until we come up with a wheelchair solution.

A few people have asked about the van. This is a long-term project. Right now we are so thankful for those who've helped us along the way and we've been able to do what we've needed to to keep our current van running.

I promised Maya this weekend we'd switch out our decorations from Fall to Thanksgiving so I see lots of crafting in my future. She wants to "make a rainbow turkey". Gotta figure that one out....

As always, thanks for checking in and joining us on our journey.

Holly

Saturday, October 31, 2009 11:08 PM CDT

Well, the good news is she's feeling better. We went in and did blood cultures, swabbed her for influenza, and everything so far turned out good. BC are coming up on the 48 hour mark so all seems well there. She also is feeling so much better. Thankfully she'd gotten IVIG before leaving the hospital and it most likely pushed her through whatever virus she had. She did have a very high phosphorus so we'll recheck labs again on Monday to make sure this has come down after removing all her phosphorus from her TPN again.

The even better than good news is she felt like going out for trick or treat tonight. We made a trip around the block then went to visit a friend who was kind enough to get her a non-candy treat so she was thrilled. She came home and picked out her 3 pieces she can keep and share over the next week and then put the rest in a bowl for the "candy fairy" to pick up tonight. The candy fairy stops by and picks up the candy and in exchange leaves a little gift. Since she doesn't really eat by mouth other than a taste has been our way of making the candy exchange.

Enjoy the pics!

View this montage created at One True Media
trick or treat 10/31/09

Friday, October 30, 2009 1:13 AM CDT

Was hoping to get some pictures of her in her costume today, but she's really not feeling well. Started with a headache today, cough and fever with sore throat this afternoon. I changed the front picture so you could get a quick preview of my Little Mermaid!

Will update in the morning with hopefully the good news that nothing is wrong!

Holly

Wednesday, October 28, 2009 9:03 PM CDT

We are home!!!

I'll update more later. She's still not herself and feeling rough. We are thinking this all started with a virus so we are going to really watch contact and how much exposure she's getting including not going to the clinic for her appointment right now. We'll continue to do labs and work from there.

She got her halloween costume while we were there. A wonderful friend made it for her and I can't wait to share. Will work on doing so tomorrow. Trust me, it's worth the wait.

Holly

Tuesday, October 27, 2009 8:46 AM CDT

Sorry about the lack of an update. Maya did well, but I didn't really have the chance to get on here and use the computer after she was back. They were able to remove the old line and replace it, but due to some size change and the vessels available it was a little rougher than usual. She has an extra incision and the new line isn't really in a great place, but it's done and she did great so that's all that matters.

Today she is getting IVIG and then tomorrow we'll see nephrology and endocrine then head home. So happy to be getting out of here and back to our own beds.

Thanks for checking in.

Holly

Sunday, October 25, 2009 9:04 PM CDT

Thank you so much to everyone and talking to those of you who came to the benefit today. We loved seeing you all and although Maya fell asleep 15 minutes into visiting with those of you who had the chance it was great fun to be part of the celebration even here in Milwaukee. Big thanks to those who planned the day and worked to make it a success. We love you all and appreciate all you do to support us. Having the web cam was a great way to let us join in and we were happy to see so many of your faces there.

As far as a Maya update... she's plugging along. We've had several IV's this weekend, they last about 12 hours then need to be moved and restarted as that's as long as we can keep them working, but we are on the homestretch and she should go to the OR tomorrow for her new line. Right now we have one in her foot and then one centrally. She's blistering where they've infiltrated so that's a bit of a puzzle, but we have access and that's what's important at this time.

She's still pretty sleepy, sleeping most of the time since we've been here. Awake for an hour or so here and there, but that's about it. Hoping to see how that plays out, but still want to hopefully hit the road once this line is in and her phosphorus stays put. Wednesday? That's my guess.

I'll update tomorrow once the line is in and we are back in the room. Not sure on a time yet for the OR.

Holly

Saturday, October 24, 2009 7:00 AM CDT

That little black cloud continued to follow us yesterday. After just 2 hours of sleep I was woken to the words, "there's something wrong with her line". After much manipulation and TPA it was determined the inner lumen was broken and therefore she needed a line repair. We repaired the line only to find that the line now didn't work at all! (yes, you read that right). Now, her line is her lifeline, her sole source of hydration and nutrition, the route the majority of her medication is given. It is not optional, it is not for decoration. It is also not an option not to have some functioning access 24/7 so we quickly had to start another IV, try a second repair that not only wouldn't flush, but leaked only to determine at 4:30 on a Friday afternoon we couldn't save her line!

So, because of her admission and because of our continuing struggle to keep her phosphorus up we have to wait to put in a new line until Monday to make sure we are OK to go to the OR. She'll then get a new double lumen line placed as she's too small for a triple. For those of you who aren't aware, her line is tunneled under her skin and placed in a large vessel with the tip of the line resting in her heart. The lumens are actually how many different lines are in that on catheter you are placing. Because of the amount of medications she's on and the fact she needs TPN, lipids, IVIG and frequent blood products the more lumens make giving all that stuff easier.

To top it off she's unusually sleepy. A bit concerned about the amount of sleeping except that when she is awake she's very coherent and able to do what we ask her to so hopefully none of this is related to the hit she took to her head on Thursday. Today she has an ultrasound, praying for no big surprises there.

We are trying to work it out so we can hook up the webcam and attend the benefit that way. I hope anyone who was planning on attending will still attend event though we can't be there. I did make a slide show that has so many picture of the way she cherishes life each day and faces it head on. Now, if I could just take a lesson from her.... the past few days have been so bad I just decided to face life in my PJ's all day yesterday, but I suppose in respect of her spirit I will have to clean up and get dressed at some point this weekend :) That and most of the people here are sick of looking at me sitting around in my PJ pants and a t-shirt since we arrived!

Thanks for checking in. We appreciate the messages and the support. This is a journey I'm so glad I don't have to travel alone.

Holly

Thursday, October 22, 2009 10:01 PM CDT

Well, after an excellent day yesterday visiting her "guys" (the Onalaska firefighters) we are back in Club Med. It' isn't real clear what's going on, but she's been having some issues with her breathing and heart rate over the past couple of weeks and then todays labs showed a very, very low phosphorus and low platelets which are her hallmark signs of sepsis. Thing is.... she doesn't look septic. So hard to tell what going on since we know there is something, but this isn't her usual picture she gives us and no one quite knows. The hope is by responding quickly to this phosphorus we can hopefully catch whatever is causing the problem sooner than later.

We had quite the day. She started off at the doctor this morning for labs and a chest x-ray then I had to go to the doctor. After we got home we heard about her labs and turned around and headed back to the hospital where she fell on her way in and split her head open on the sidewalk.... yes, you read that right. Because she is anticoagulated we had to go ahead and glue the wound instead of suturing it and hopefully it will heal up ok. It was a pretty deep area going all the way down. She also has a pretty good scrape on top of her head. After that was all sorted out we made it up to the floor to wait for transport to come get her and as they were wheeling her off the floor to the ambulance to go to the airport her entire ostomy starting leaking all over the place so we backtracked to fix that. When we finally made it to the ambulance they tried to start the ambulance up and the battery had died so we had to unload and get in another ambulance.... at this point I was a bit nervous about getting in the plane to fly figuring if anything could go wrong it would, but other than some rougher than normal flying we arrived safely and are settled in.... info at the bottom of her page.

I'm starting to think she's got a goal of trying out every room in this PICU the first year it is open. Too bad for her we keep getting rooms we've had before! Maybe now she'll listen and stay out of this place! Hopefully it's a short stay, thankfully we have our wonderful team of nurses and doctors taking care of her and trying to make that happen.

The benefit is still on, I'm trying to work out a way to use the webcam so she can "attend" via computer. If not, we've made a DVD slide show of a lot of her pictures from the past couple of years.

Monday, October 19, 2009 9:38 AM CDT

Another low key weekend trying to avoid the germs that are out and about. Maya had a "bed day" on Saturday. Her favorite variety of staying in bed and playing computer, watching movies, doing sticker and dot-to-dot books and playing with her fuzzy friends. It gives her such a recharge to not have to be up and using her muscles and energy after the long week and she so cherishes the time and I love the time we can spend snuggling and reading stories and watching her regenerate for the upcoming week.

Yesterday she asked for a "Mama Maya Day". Not that everyday day isn't a Mama Maya day, but on Mama Maya day, the phone can ring if we are busy, the computer stays off for the day and we just focus on the activities we've planned out. Yesterday it was her first viewing of The Wizard of Oz which she's been waiting for for weeks now. We watched complete with snacks which I filled her order of "one very long french fry" and a sip of Mountain Dew. After the movie we created pumpkin kitties and drew pictures of our favorite princesses along with making a spider web from glue and sand since she's been studying spiders this week. She then got to choose the games which we played until bed time so it was a successful day and nice for both of us to relax for the weekend.

Next weekend is our big get together for Maya's fundraiser. It sounds like it's going to be a lot of fun and a great event. I'm so humbled and thankful for our friends for doing this for us to keep us on the road in a reliable vehicle. The info is at the top of her page if you are interested.

We have a busy week ahead of us. Appointments, school, therapy and that sort of thing. Thanks for checking on us.

Holly

Sunday, October 11, 2009 11:13 AM CDT

I've had some interest in Maya's bracelets and finally got the shipping information. If you want to send the money for the bracelets I'll get them off in the mail ASAP. If you are local, let me know and we can make a delivery. PO Box 462 Holmen, WI 54636

**Thanks for continuing to check on us. Again, we are selling bracelets that say "Maya-Celebrating Life". They are $4 per bracelet and $10 for 3 of them. Shipping is $1 for one and $1.50 for 3 or more. They, of course, are purple. The proceeds from these are for her special needs trust so if you write a check, please make it out to the Maya Owens' Special needs Trust.**

Maya's doing pretty well, it's gotten cold here so we've only spent brief moments playing in the leaves, but she's loved the 5 minutes here and there she's had to do her "crunching" and "collecting". I need to find a rake and make her a big pile to play in one afternoon before they are gone. She's just loves the leaves which is pretty evident by the amount of leaves she sneaks into the house with her!

Maya's had a fairly low-key weekend with the exception of some visitors yesterday. It was nice to have friends drop by and a chance to visit with someone who doesn't spend the majority of their time discussing the merits of Hello Kitty and Strawberry Shortcake.

Her appointment on Thursday went well and at this point it was decided she'll be placed on homebound schooling since there have been increased cases of flu and illness in the school. With her immune issues this time of year tends to keep us at home and trying to avoid any exposure to illness. Hopefully this along with her IVIG and tamiflu we can keep her healthy through the season.

Our week includes finally getting an appointment to have her wheelchair reviewed and hopefully repaired after over a year of attempting to do so with one local home care company who dropped the ball in a big way. She also has OT and her regular labs along with school which she has each afternoon here at home. Hopefully we'll get some sunny days too so we can get out and enjoy the beauty God has created for us.

Wednesday, October 7, 2009 8:54 AM CDT

The past several days have been pretty rough for Maya. She's just not been herself on several levels and I'm not sure why. We are hoping this just works it's way though and in turn she'll fell better and then this will also improve the behavior issues we are seeing.

Nana and Papa have been here since Saturday and left last night. We had a nice visit although it would have been nice to have Maya feeling better and it not to have rained the entire time they were here, but we had a great time visiting and just hanging out here at home. Maya loved having more people to read to and play games with and did several puzzles with them too. It was a nice visit and we were sad to see them go. Papa did get a little present from Maya to take home... her cold! Sorry Papa!

We did get a bit of excitement while Nana and Papa were here. Our van quit and left us stranded in the rain! The entire thing died and left her chair stuck inside. Thankfully Papa was here and spent part of one day getting it running again... for a little while anyway. We are also so thankful Nurse Nancy came to the rescue and was able to give Papa a ride back to get his truck--Thanks Nancy!

Hopefully Maya will start feeling better soon and we can get out and enjoy a bit of fall. The leaves are turning and falling which is one of Maya's favorite things so we've gotta get out and play before they all blow away! Just gotta get the Butterfly feeling well again.

Thanks for continuing to check on us. Again, we are selling bracelets that say "Maya-Celebrating Life". They are $4 per bracelet and $10 for 3 of them. Shipping is $1 for one and $1.50 for 3 or more. They, of course, are purple. The proceeds from these are for her special needs trust so if you write a check, please make it out to the Maya Owens' Special needs Trust.

Thursday, October 1, 2009 5:12 PM CDT

Can you guess where we were this week?

If you haven't guessed, this week was Oktoberfest here in LaCrosse and as we do every year we were able to attend Specialfest with the other special kids in the community during the afternoon on Tuesday. Maya had so much fun with a couple of her classmates riding rides and taking in the crowd. It was a wonderful experience and such a thoughtful thing that's done each year for these kids. It was cold though and very windy. We had gloves and jackets on to stay warm. Who would have thought it was still September!

In other Maya news this week we've sure made our rounds with 4 doctor's appointments, an occupational therapy appointment, 2 speech therapy visits, assistive tech, and a day of school. She has one more morning of school tomorrow to top off the week then I'm guessing she'll sleep the weekend away.

Medically we are going to start a new medication tomorrow to help with the neuropathy in addition to her neurontin, but one that works on a slightly different pathway and therefore should be good adjunctive therapy for her pain in her legs and back. We are also still working on wheelchair modifications which we are over a year into, but with her needs frequently changing it's difficult to anticipate how to adapt for her needs. Needless to say, she had a very difficult day yesterday being in her chair all day during our trip to Milwaukee and was in tears much of the time and there is just no way to get her comfortable or support her increased weakness as the day goes on.

On another note we are beginning to see reminderbands (those little imprinted bracelets in different colors) Ours are purple and say "Maya-Celebrating Life." They are part of the fundraising listed up top. Let me know if you are interested and I can post more info and postage if you are not local, otherwise we are making deliveries.

Thanks for checking in and making it this far! We cant thank you enough for the amazing support we get each day from our readers and Maya fan's!

holly

Saturday, September 26, 2009 12:28 AM CDT

Maya's had a bit of a rough week. She came home from 2 hours of school yesterday and slept from noon until this morning. She did wake up this morning feeling better, although she's still resting and complaining of a sore throat. We are going to lay low this weekend since next week is Specialfest as part of Octoberfest and she's looking forward to going with school and riding some rides. We also have a trip to Milwaukee planned for Wednesday which will be a big day with both neurology and immunology appointments that day and a round trip.

For those of you not local, I wanted to share this article from our local paper.

Maya and the Motorcycle

Still amazed.....

Sunday October 25th Poker Run and Benefit

Maya Owens is a 10 year old Holmen resident. She has been diagnosed with Mitochondrial Disease, a progressive, metabolic disease causing organ dysfunction and energy crisis throughout her body. Although her care requires frequent trips to Children's Hospital in Milwaukee and daily IV medication and nutrition she chooses to embrace life. Mitochondrial disease has no known cure or treatment, just management of symptoms that sometimes means long hospital stays or being in her wheelchair. Despite these hurdles she is full of smiles and laughter and loves to spread her wings and FLY!

Poker Run will begin at the Hawg Pasture in West Salem with registration starting at 10am with the ride beginning at noon. Will end at the Holmen American Legion with benefit at the Legion from 3-8pm.

Food, raffles, silent auction, music by Highway 16, and more�

Money raised will go to the Maya Owens Special Needs Trust to assist with purchase of a safe, accessible vehicle. Call Robin (608) 781-2858 or Ken (608) 769-3616 for additional information or donations.

Maya Owens Special Needs Trust, 137 Deerfield Circle, Bryan, OH 43506.

Thursday, September 24, 2009 9:33 AM CDT

We've had a bit of a bumpy week. Not terrible, but bumpy. We are going to try to modify things in hope of getting her back on track, back in school, and feeling better overall.

And since I know you are really here for the pictures :) I do have some pictures to share from some fun we had a while ago at a local event. Maya got to hold a kitten which she loved and we had to pry from her.

Still amazed.....

Sunday October 25th Poker Run and Benefit

Maya Owens is a 10 year old Holmen resident. She has been diagnosed with Mitochondrial Disease, a progressive, metabolic disease causing organ dysfunction and energy crisis throughout her body. Although her care requires frequent trips to Children's Hospital in Milwaukee and daily IV medication and nutrition she chooses to embrace life. Mitochondrial disease has no known cure or treatment, just management of symptoms that sometimes means long hospital stays or being in her wheelchair. Despite these hurdles she is full of smiles and laughter and loves to spread her wings and FLY!

Poker Run will begin at the Hawg Pasture in West Salem with registration starting at 10am with the ride beginning at noon. Will end at the Holmen American Legion with benefit at the Legion from 3-8pm.

Food, raffles, silent auction, music by Highway 16, and more�

Money raised will go to the Maya Owens Special Needs Trust to assist with purchase of a safe, accessible vehicle. Call Robin (608) 781-2858 or Ken (608) 769-3616 for additional information or donations.

Maya Owens Special Needs Trust, 137 Deerfield Circle, Bryan, OH 43506.

Thursday, September 24, 2009 9:33 AM CDT

Tuesday, September 22, 2009 8:52 AM CDT

Click Journal History if you missed Saturday's entry...

After our experience on Saturday a friend of ours along with the organizer of Maya's awesome ride decided to put together a fundraiser to assist in the purchase of a safe and reliable accessible vehicle for Maya. They've asked me to post this here... I'm in awe of the entire thing. It is so amazing to me to have this done for us and so humbling. We hope to have a great turn out and a lot of fun.

Sunday October 25th Poker Run and Benefit

Maya Owens is a 10 year old Holmen resident. She has been diagnosed with Mitochondrial Disease, a progressive, metabolic disease causing organ dysfunction and energy crisis throughout her body. Although her care requires frequent trips to Children's Hospital in Milwaukee and daily IV medication and nutrition she chooses to embrace life. Mitochondrial disease has no known cure or treatment, just management of symptoms that sometimes means long hospital stays or being in her wheelchair. Despite these hurdles she is full of smiles and laughter and loves to spread her wings and FLY!

Poker Run will begin at the Hawg Pasture in West Salem with registration starting at 10am with the ride beginning at noon. Will end at the Holmen American Legion with benefit at the Legion from 3-8pm.

Food, raffles, silent auction, music by Highway 16, and more�

Money raised will go to the Maya Owens Special Needs Trust to assist with purchase of a safe, accessible vehicle. Call Robin (608) 781-2858 or Ken (608) 769-3616 for additional information or donations.

Maya Owens Special Needs Trust, 137 Deerfield Circle, Bryan, OH 43506.

Monday, September 21, 2009 8:05 AM CDT

click on journal history to see Maya's experience from Saturday.

Maya's not been feeling well the past few days. It started on Friday and although she pushed herself on Saturday for her ride she never really made it back to baseline. Saturday afternoon it was pretty clear she was just struggling to stay awake and sit in her chair and since then she's not gotten out of bed. I did get her up for school this morning, but she quickly fell to sleep on the floor in front of her bed so I just scooped her up and put her back to bed. I'm hoping she'll wake up feeling better. She was up a lot last night struggling with GI pain which is something she's continued to have since surgery, but not to the extent we had last night. Time will tell... the good news is her fever has seemed to go away and not returned so hopefully we can avoid an admission and ride this through at home.

Holly

Saturday, September 19, 2009 6:49 PM CDT

Maya's not feeling her best this evening, but still managed to have an awesome day. About a year or so ago she came up with this list of things she really wanted to do. We worked on it and typed it up and decided to call it... "100 Ways to Celebrate Life!". There are all sorts of things on the list including things we've completed and things it may take years for us to achieve, but when an opportunity presents itself we like to 'grab the golden ring' and hang on for the ride.

One thing she's wanted to do for a couple of years is ride on a motorcycle. This has been a difficult thing since she needs her pumps and has poor balance. God always seems to place people into the paths of others and today Maya received her ride. It was such a blessing and so much fun to see the smile ear to ear as they pulled away with her in the sidecar to the motorcycle and right before bed tonight she said, "I think we should ride in a motorcycle every weekend!" So, needless to say, the ride was a hit. She was able to share her 'moment' with her friend Megan and the guys who came were so wonderful not only giving her a long ride, but the experience of being out on the road with not just one motorcycle, but 4! They also brought the girls T-shirts which they both loved as well. Thank you guys!

I know I've said it before, but so many times there has been a need or want and it is provided. From the little to the big God watches out for us. I can't even number the times this has been true in the past years.

She's asleep already, has been for an hour. It's always a balancing act to decide what she can and can't handle and clearly the past couple weeks have caused her to have moments that make you question if it's worth it, but it only takes a moment with her to know and see the joy and the zeal for living and you'll never question if it's worth the two days in bed to recover. We are trying something new this weekend and giving her a more IV fluids than usual in hopes of seeing her pop back more quickly. I'm so thankful for a team of medical professionals who agree that her opportunities and ability to enjoy life are as important as all the medical support she requires.

I'll leave you with pictures of our day....

Wednesday, September 16, 2009 10:42 PM CDT

This won't be too exciting but...

Maya's had a rough couple of days. It's the nature of Mito, unfortunately she is paying for her weekend, but you can't give up living life so we push forward.

Today by afternoon it was a better day and I'm thinking tomorrow we should be back to her baseline.

She's still talking about her wonderful weekend and how much fun she had. Makes me know it was worth the work and the recovery to make those moments for her.

Nothing much to write since she's been in bed since we got home, although she did make it to PT for an eval late this afternoon. She's having a lot of joint and back pain so we had to check things out and get a plan in place for that.

Tomorrow she has speech and computer then back to school on Friday! She can't wait.

Holly

Sunday, September 13, 2009 7:49 PM CDT

Today was the Special Needs Program picnic here in Milwaukee. It was a lot of fun and Maya fell asleep before we were even out of the parking lot. There was a magician and she was able to volunteer to go up and help him which she loved, they also did crafts and had face painting.

Her beloved Sniggledoodle

Finally a butterfly!

It's magic.

Maya's square for the 2009 quilt.

This evening was her big surprise...... She's waited all summer for this one.

Saturday, September 12, 2009 6:11 PM CDT

Last night we went camping. It was Maya's first time. She was thrilled and had a great time. We roasted marshmallows, made smores, and slept in a tent. There was none of it that wasn't a great adventure for her and she's already looking forward to next summer so we can go again.

After a few bumps in the road this week I was glad she was feeling so great and is having such an awesome weekend.

Tomorrow is our special needs picnic in Milwaukee. We are hoping to attend that then have a special treat tomorrow night before her Monday appointments. Stay tuned for pictures from tomorrow to see what excitement she finds...

Hope everyone is having a great weekend. Here are a few pictures from ours so far.

Sunday, September 6, 2009 3:23 PM CDT

This morning we helped our local firefighters raise money to support the MDA.

The "Fill the Boot" tradition is followed by fire departments across the country and we were honored to be asked to help our local department out. Although we don't currently access the services offered by the MDA, their camps and clinics are available to us as Maya's diagnosis falls under their umbrella of neuromuscular diseases... regardless it's a cause worth supporting and we had a great time getting out there and participating.

Maya had a great time. She always enjoys spending time with everyone from the department and I feel so blessed to have a group of people who really make her feel so special.

Maya took her job very seriously and help her boot with pride asking everyone who walked past to "fill her boot"

and in turn thanked them and gave them a sticker saying they gave in exchanged (and often insisted they take it if they wanted to or not, LOL!)

The rest of our week was pretty low key. Maya was able to make it to school both on Wednesday and on Friday and had a great time both days. She does a wonderful job the first two hours she was there and struggles the final hour, but pushes herself and makes it through. As always, it's lot of fun to watch her learning and interacting with the kids (and picking out her clothes--or should I say her jewelry--in the mornings).

We've got another action packed week with school and such then off to Milwaukee for the Special Needs Department picnic on Sunday and appointments Monday. As always, we'll squeeze in whatever fun we can come up with!

Thanks for checking in!

Holly

Tuesday, September 1, 2009 7:07 PM CDT

Today my little Mayafly started the 5th grade! She was up and ready to go and very happy to be part of the 1st day excitement today.

I also started 5th grade today, I was not as ready to go nor so excited to be there, but it's always fun to see her excitement and watch her learning. There are just times as a mommy it's hard to watch your child and this is one of them. It's not always easy to watch differences that are pointed out. Especially when you are the one doing the nursing, helping with the schoolwork, and such, but again, if that's what it takes to keep her there then we'll do what it takes.

We are both looking forward to "FIll the Boot" on Sunday at Festival in Onalaska. The fire department will be out helping collect for the MDA. We'll hopefully be there for at least a few hours of that time too! Feel free to stop by and support the MDA. MDA helps research and provide funding for many diagnosis including some of the mitochondrial diseases. Below there is a link from one of there magazines with a good article on mito.

Holly

Saturday, August 29, 2009 10:42 PM CDT

Scroll down for update!

MARK YOUR CALENDARS!!
For those of you local... Onalaska Firefighters will again be doing Fill the Boot for MDA on September 6. We plan on being there with them as we were last year... Mitochondrial Disease falls under the MDA umbrella and this is one of their big fundraisers!

FILL THE BOOT-2008

The past few days have been pretty uneventful. We finally finished her antibiotics again on Wednesday and so far no temps. Thursdays labs looked OK, we still need to watch her phosphorus, but right now we are still in the low normal range. Thursday evening we visited with her new teacher for 5th grade and then Friday we had a short meeting at school figuring out her schedule for this year. We are going to try 3 half days from 8:30-11:30 and then on her off days she'll have speech here at home and then one day she'll also have someone come work with her on the computer. We do have homebound in place. We are hoping she'll be doing well enough to participate in the fall harvest/rhythm dance again this year and do square dancing in her power chair if we get it fixed in time.

This afternoon we had to run out and find school shoes, but before that we decided to make a stop at the bowling alley for some end of the summer fun bowling.

She did really well too!

She bowls from her wheelchair and uses the bowling ramp, but still does a really good job lining things up.

Tomorrow we'll have home church and she'll rest up for Tuesday and her first day of school. She's getting really excited about starting. The picture at the top is from the other day.... She really does have her own sense of style!

Holly

Wednesday, August 26, 2009 4:53 PM CDT

MARK YOUR CALENDARS!!
For those of you local... Onalaska Firefighters will again be doing Fill the Boot for MDA on September 6. We plan on being there with them as we were last year... Mitochondrial Disease falls under the MDA umbrella and this is one of their big fundraisers!

FILL THE BOOT-2008

The week has started to get away from us already as we anticipate school starting next Tuesday. After our full day on Saturday (see history if you missed it) Maya was in bed all day on Sunday regaining her energy and just resting. She did play on the computer some and with her stuffed friends, but mostly rested. We had to do labs on Monday then stopped by the fire station to visit with her buddies. She had a great time and got to look through all the different compartments in the trucks, sit in their new engine, and talk with her "guys". She just made herself at home and really enjoyed her visit. I think she'd like to have a truck of her own. All those compartments are her cup of tea and she'd love to fill them up with all of her treasures she's currently caring around in a series of backpacks. Labs looked good so we were able to keep things the way they were and just continue on with her current antibiotics. Today's the last day on those so I'll be glad to be free of those 7 extra doses of IV meds each day. Yesterday was school pictures. For some reason it decides to rain each year on school picture day! We made it though and she remained dry. I have a large leak in my windshield on the other hand so I was moist to say the least by the time we arrived!

Today was her "favorite day of the week" Spa Day! She had her big tub bath, dressing change, ileostomy change, caps changed on her line, massage (by mom), manicure and pedicure (also by mom) and we watched Mork and Mindy and she was able to eat 2 French Fries! We try to do this each Wednesday as that's the day all those general "maintenance" things are due so we make it a fun time too and get the hair washed, styled and all beautiful and ready for another week. She gets other quick showers too through the week, but with tubes, lines, and dressings they aren't so much complete.

She is really loving Mork and Mindy. That and Howdy Doody. I can't wait to find more of the Mork seasons since we've watched this one 5x already and hoping to find some more similar shows for us to watch and share together. She just laughs and laughs and nothing does my heart good like the sound of her laughter.

Tomorrow is her weekly trip to the pediatrician then open house at school to meet the teacher in the evening. This weekend we'll do something fun to celebrate the start of school... not sure what, but now that she's home from the hospital and feeling good again we have to take advantage while we can.

Thanks for checking in, supporting us, and walking along side us on our journey.

Holly

Saturday, August 22, 2009 6:44 PM CDT

What a busy day, busy week actually. We were on the go every day this week I thnk. Mostly still because of my tooth, or lack thereof. Thursday she did see the pediatrician and had labs done most of which look OK. Wednesday we found out she has another UTI and is growing the same bacteria as she had the last time she ended up with bacterimia so we are treating her and she's back on two IV antibiotics for the time being. Friday she also had IVIG so medically it was a fairly full week.

This morning we went and saw this...

Maya loved and and looked like this...

throughout much of the program, that is when she wasn't singing along or dancing in her chair!

After the show we went and did something she's wanted to do since we moved here 5 years ago. It involved this...

Any guesses?

Well, every since we moved here she has always wanted to walk across the big Mississippi bridge. Every summer I say we are going to do it and every summer I find a reason not to, so this year we made it. She was thrilled to say the least. We spent time at the top waving to the boats and watching the water then walked down the other side before doing the whole thing in reverse. She was very impressed with the entire experience.

Going up...

Whew! We made it! Now what is there to see up here???

And back down again...

Well, she's very worn out and after last nights allergic reaction and today's activity is in much need of some serious rest so tomorrow is earmarked for rest, and rest, and more rest. In fact, she's already in bed and told me she plans to stay there until Monday!

Thanks for checking in on us as we cram all we can into these last weeks of summer. Only one more week until school starts. This week we go meet the teacher and have school pictures. Hard to believe she's going to be a 5th grader.

Holly

Tuesday, August 18, 2009 10:13 PM CDT

Maya had a good weekend. We were able to take a short trip out to see the Sand sculptures out by the river and also to the movies. Sunday her friend Megan came over to play for a couple of hours so she was exhausted by Sunday night. It's so nice to see her being able to tolerate and enjoy being out and enjoying interacting with the world again.

Here are some pictures from our weekend...

Labs on Monday looked good. We have a few little things to keep an eye on, but overall she's in a really good place right now. She's looking forward to our "Mama/Maya Spa Day" tomorrow. We are also going to be seeing Sesame Street Live this week which she's very excited about.

MARK YOUR CALENDARS!!
For those of you local... Onalaska Firefighters will again be doing Fill the Boot for MDA on September 6. We plan on being there with them as we were last year... Mitochondrial Disease falls under the MDA umbrella and this is one of their big fundraisers!

FILL THE BOOT-2008

Holly

Saturday, August 15, 2009 8:43 AM CDT

Wow! A week flew by already. Nothing too exciting to tell. Maya has had a pretty good week. Thursday we were at Dairy Queen for the Children's Miracle Network, Miracle Treats Day and she got to sample a blizzard which she loved. She's still talking about it and although the 5 bites she took of it made her sick the rest of the night she told me it was "so worth it Mama!" She loves her ice cream, but it gets her every time. It's hard to watch since we've tried as little as one teaspoon and she still ends up retching even with her tubes draining, but she is determined to continue trying. We've decided to limit it to once a week though since it takes a few days to get past the pain.

She's declared Wednesday as "Spa Day". She gets a bubble bath, hair wash, dressing and ostomy change. Then we move on to nails (fingers and toes), hair do, a movie and ice cream. Follow that all up with a lotion massage and we've pretty much "spa-ed" the day away. Right now her movie choice is still season 1 of Mork and Mindy. I've got to start looking for season 2 because as good as the show was the first time through it's now the 5th time and it's getting old. (well for me anyway)

Today she's getting her haircut. She keeps reminding me "only 3 inches". We'll see what we actually end up doing. She's sitting on it so it needs to be trimmed up.

Medically we did labs twice this week and other than keeping up with fluids things look pretty good. She finished her IV antibiotics on Thursday and we'll do cultures on Monday to see if we've cleared things. Her bili is creeping up and out of the normal range now so we need to keep an eye on that along with a few electrolytes that like to cause us some grief once in awhile, but overall she's doing great and looks awesome. We are trying to enjoy the end of the summer here before school starts since pretty much the entire summer was spent at Children's or sick.

Thanks for checking in.

Holly

Sunday, August 9, 2009 9:08 PM CDT

We've had a pretty good weekend. Maya used it to rest and get back into the routine of being home. We continue to have ileostomy issues, but they are workable and more time consuming than anything. She's also still on multiple antibiotics for her infection so that keeps Mama busy too.

We watched The Sound of Music and she absolutely loved it. It was so fun to watch with her and hear her singing along. We've also been watching Mork and Mindy which she thinks is hysterical.

Our week is not too bad, I think we actually get to stay home from Milwaukee the entire week! She has a dentist and a doctor appointment here in town and a couple of therapy appointments, but mostly the plan is to just let her rest and regain her energy. She's very excited about school starting soon and I want her to be healthy and ready to start.

Here are a couple of pictures from this weekend..

Maya and her babies...

Pookie wondering when it's his turn for a nap!

Thanks for checking in!

Holly

Thursday, August 6, 2009 4:09 PM CDT

Ok, as said before, we are home. I ended up needing to go in this morning for some dental surgery so...O-U-C-H! is about all I have to say on that matter.

Maya's glad to be home. She's still having some problems with her ostomy so we are daily trying to keep it working and hopefully with our prodding it'll continue to do it's job. Overall she's feeling better. Her infection is cleared and it's just a matter of a few more weeks of antibiotics (2 of them) to keep her clear and then we're good to go again. She was happy to see Pookie and a stack of postcards waiting for her. I need to make a list again of all the wonderful places we've learned about through this project. Thanks to all who've been involved.

Not too much more excitement going on here. Hopefully we'll get out this weekend and enjoy what's left of the summer. Thanks for checking in.

Holly

Thursday, August 6, 2009 8:15 AM CDT

Home!

I'll update later today, but wanted to let everyone know we made it.

Holly

Tuesday, August 4, 2009 8:23 AM CDT

Sorry for the delay in updates. Things are going pretty well here although we are still in Milwaukee. Her infection is under control and we are having a few issues with her ostomy output, but nothing too exciting.

Maya's been busy re-naming people and doing sticker puzzles when she's not sleeping or playing the the temp probes. We were able to make a few scheduled changes to her meds while we were her to save another trip down. She's also been having PT everyday and art therapy. We are so blessed to be able to have the opportunity for her to get to participate in art therapy here.

As far as going home I anticipate in the next day or so we'll head out and hopefully stay there more than we have been in the more recent months. I've been reading lots so I need to finish my book today as reading for myself is in short supply at home due to time constraints.

Thanks for your continued support. I'll work on updating more regularly now that I've plowed through the 4 book series I read this weekend :)

Holly

Thursday, July 30, 2009 9:34 AM CDT

Well, we are back in club med. Maya was air transported last night after we've been struggling for a week with this infection and making very little progress.

She started with a UTI which moved right into an infection with the same organism in her bloodstream. Hopefully now that we know what is going on things will move a little better and this will be a pretty short trip.

She has had some problems with her blood sugars this morning so we are keeping an eye on those. Most likely it's related to her steroids so hopefully as we wean her off her stress doses those will resolve too.

I'll update later as we know more. She has some radiology tests ordered for today so hopefully we'll have a clearer picture then.

Holly

Friday, July 24, 2009 5:22 AM CDT

Maya is doing pretty well although she's still having increased pain around her ostomy. This has been going on since Monday so we saw the surgeon and we were able to put a tube in her ostomy to give her some relief. This is something I can do at home to keep her comfortable too. She is having problems prolapsing, but right now they are happy with the ostomy and how things looks so we'll hang tight and see how time plays things out. We also saw urology and they'd like to wait until she is 2-3 months post op to see if we need to restudy her vesicostomy. The hope is that as she continues to heal from her surgery her bladder will improve also. He explained that during the surgery she had many nerves around the bladder are cut as they remove the colon.

Overall we had a good visit. She's not sleeping well, but that how seh seems to cycle sometimes. Makes for long nights, short days and lots of tired!

Thanks to everyone who continues to encourage us on our journey. It means the world to both of us to know how loved she is.

Holly

Wednesday, July 22, 2009 6:36 AM CDT

We are headed to Milwaukee again this morning. The week has proved to send many interesting curve balls our way and there are a few issues we need sorted out to come to a place where we can once again have routine in our days. She has assorted appointments over the next two days and then hopefully we'll know what is going on with her better. We spent the better part of Monday in the clinic here with labs, KUB, etc. She was having a lot of pain that came on suddenly, but then left eventually. KUB didn't shed much light, but we are taking the disc with us today to make sure they don't see anything else there. We are thinking maybe it was another kidney stone, but not sure.

Despite everything, she did well the past 24 hours and I think we are ok for now. We did have a short night last night, but seems since returning from club med all our nights are short.

Well, off we head and I need to pack the van us. Please continue to remember our friend, her family, and her little angel daughter this week in your prayers.

Holly

Friday, July 17, 2009 10:52 PM CDT

We are still home, trying to adjust and hopefully unpacking soon! I still haven't gotten things put away. Things have been pretty busy here and seem to be getting busier. Daisy is giving us a run for our money and keeping us up all night and not allowing for naps during the day. That makes for a very tired Mama.

Overall, she feels well. She has moments where her pain can get pretty bad still, but overall we are more improved than prior to her surgery. Today she spent most of the day on the couch not feeling real well. Hopefully tomorrow will be a better day. She was excited to update her postcard collection with all the recent postcards she received. Thanks so much for helping in this project. She has a little suitcase we are keeping all the cards in and we've been learning about lot so new places.

We are hoping to get out this weekend and enjoy the cooler weather. Maya doesn't do heat so the coolness is nice for her even though I think this is the first time I've needed a jacket in July!

Thanks for checking in and thinking of us.

Holly

Tuesday, July 14, 2009 7:57 PM CDT

Home, a haven, a safe place. We've made it. Maya is so glad to be home, so glad to have her kitty back and be tucked into her own bed. The ride was rough, but a small price to pay for the luxury of returning home. We were greeted by our giant "snowball" bush outside the door and Miss Maya had to bring one in to enjoy. She's really doing well, we have our bumps and challenges we are sorting out and still facing, but tonight all is well.

The only real damper on our return is two of our friends who are in need of prayers and comfort tonight. One of our friends in the hospital faced challenges of his own last night and faces a very rough recovery, if you could please keep him in your prayers as well as a friend of mine and Maya's who is missing her little girl more and more each day. Please say a prayer for both of them.

Thanks again for all your support through everything including the past few weeks. You keep us going.

Thanks,
Holly

Monday, July 13, 2009 11:43 AM CDT

We aren't going home today. We'll leave tomorrow. They'd like to watch her one more day and make sure her ileostomy is cooperating as we did a little manipulation today. This weekend she was able to get up in her chair and outside for a little bit. It was nice to get out and in the sun and fresh air.

She just had school this morning and did great. The worked on math and spelling and it is amazing the difference just since her surgery in how well she is doing. I can't wait to get home and have the last month of summer to enjoy with her.

She's missing Pookie and everything else about her home. We both are.

Thanks for all the support this admission. We appreciate it.

holly

Saturday, July 11, 2009 9:43 AM CDT

All is well here. She's the best she's been since last summer. Playing, doing puzzles, joking with everyone. So nice to see her like this. She still has some pain, but nothing like what we were dealing with. She is a different kid. It was more than the surgery, we also upped her steroids and she seems to need the higher dosing to really do well. Whatever it takes.

The plan is to get out of here on Monday! Yipee! We'll even be of antibiotics and all by then. I have to say, it's good to know we finally did something for her that helped her.

Thanks again for the support and the help getting us what we've needed, mail, support, etc.

holly

Thursday, July 9, 2009 1:38 PM CDT

Today's not as bright as yesterday. She clearly does not feel well although there is nothing to place a finger on. No real temp at 101.5 (that's not "real" around here) and HR is elevated, but still in the 110's which is fine. Only thing we changed was her steroid dosing so maybe she just wasn't ready for that. Waiting on special needs rounds this afternoon. No changes made during critical care rounds this morning, surgery and pain also planning on holding the course for now.

Met with a very sweet labrodoodle today for pet therapy.... me not her, she was sleeping. I can always use some doggie therapy though. :)

She did have art therapy yesterday and painted which she loves.

Thanks for all the cards and well wishes.

Will update if anything changes.

Holly

Wednesday, July 8, 2009 8:40 AM CDT

Daisy-A new lease on life!

Maya's CT did show some fluid, but since she is on antibiotics we are just going to continue them a few extra days and if she continues to improve symptomatically we'll not need to do anything further.

She had a good night and slept until 2am when she started to wake up hourly with pain. We got back on top of that though and she is feeling pretty well this morning. We are going to tweak a few other meds on her today and hold the course otherwise with the goal of escaping on Monday!

Thanks for continuing to check in. We appreciate all your kindness.

Holly

Tuesday, July 7, 2009 8:16 AM CDT

Maya had a rough afternoon yesterday as she continues to run fevers. They decided this morning she needs to have a CT scan to rule out any sort of abcess in her belly since her line cultures remain negative. My guess is it is a combination of inflammation and obstruction since her markers point to that and her liver numbers were looking like it yesterday. These are already a titch (is that a word?) better today. She is jaundiced and her bili is quite high for her so hopefully that will come down today also.

Overall, I think she looks better than last evening. It may be that now her temp is 100 and not 103 or it may be she is actually doing better, time will tell.

Yesterday she got a lanyard from my brother and his family in the mail. It is one of the Disney trading pin ones and had three Ariel pins on it. she LOVES it! She is so proud of it and wears it all the time. It's hanging on her bed right now as she sleeps and I can see it's going to be a prized possession of hers.

I'll update later if her CT shows anything of interest. Thanks for checking in and the uplifting notes we've been receiving. It's good to know we don't walk this journey alone.

BTW-the picture at top is the night before surgery. She wanted to swim that day, but it was in the 60's (Yep, July and it was 60) Anyhow, we opted for the tub, but she wasn't going to let the change of venue make things less fun. She decked out in her swim suit, swim ring, and goggles for the experience.
Holly

Monday, July 6, 2009 9:24 AM CDT

To me she doesn't look as well today. She's awake though and coloring, just tired and wondering why it is we did this to her. Last night I had to say the words no mom wants to ever say, "LET GO OF YOUR INTESTINE!". She was feeling around and found her ostomy. I'm not sure she realized what it was and was grabbing it and asking me to get it out of her bag. Funny... well, funny if you live our lives anyhow.

This morning her hgb was 7.5 so she got another unit of blood. We are checking to see why she dropped so much seemingly overnight. Several theories, but since she looks well hemodynamically we aren't really too concerned at this point. There are a few other lab values we'll need to closely follow to see if they trend one way or another, but that'll happen over the next few days. Can't really get too excited over just a number until we see where it goes and put it into context.

No huge plans today. She'll have PT and have to get out of bed a bit. Her teacher will also be by to do school with her at some point. Hopefully she'll feel up to at least being read to.

Thanks for the continued encouragement. We love all the notes, emails, and cards.

Holly

Sunday, July 5, 2009 7:12 AM CDT

Yesterday, amidst frequent sleeps she expressed one wish... fireworks. So afraid she was going to miss the special display of the 4th. So, we switched on PBS last night as for 5 minutes she watched the fireworks and listened to the sounds of the William Tell Overture. She loved that the background was Washington DC and pointed out our great landmarks.

It was the end of a turning point day. Yes, she still has a fever. Yes, we are still dealing with pain. Yes, her labs could look better.

BUT... her ostomy is working. Her liver numbers are better than they've been in years. We have doctor's and nurses on top of every issue. And we are so blessed to live in a country where we we have this level of medical care available to us on a daily basis.

Holly

Saturday, July 4, 2009 6:01 AM CDT

A better night....

Tylenol has kept her temp down to 100.5 so that is a good thing. She also slept pretty well with the help of her PCA and meds. I woke this morning to her receiving blood which I think will really help boost her and I know she needs it. Maybe this will be the answer to some of the issues with her numbers. Unfortunately we've needed to use a 3rd I've site since the blood doesn't run with her other medications. It's working well though and hopefully it will hold out through this unit.

She's still pretty tired and when she's awake is dealing with more pain, but overall she's coping with the surgery. She was pretty excited to find out it was the Fourth of July today so 'm sure she'll deck herself out in her red, white, and blue t-shrt and hair bows after her bath this morning. I'll try to get a picture if she'll let me.

Thanks for continuing to check in. I'll update if anything changes.

BTW-the picture is from the 4th last year, we were out on a Heron hunt at the time. i cant' believe how young she looks just a year ago.

Holly

Friday, July 3, 2009 4:56 AM CDT

I wish I could say, "what a difference a day makes", but I can't say that...YET!

Hopefully today is the day for her to turn around and start to improve. We were up much of the night with fevers, fluid bolus, temp, x-rays, etc. Having a hard time keeping her CVP up and her renal sats up. When she wakes up, other than the surgical pain, she talks to us and acts fairly well. She just discovered what the surgery was for this morning and promptly named her new ostomy, "baggie". So, now we have Bert, Bob, Bertha, Rapunzel, and Baggie! She loves to name her stuff.

Overall, we are doing OK. Slow and steady wins the race.

Thanks for all the wonderful notes and prayers. We appreciate them all.

Holly

Thursday, July 2, 2009 7:27 AM CDT

1:30 Update: Just saw her on her way to her room. She looks great! Surgeon said things went well although there was some leaking of stool into her abdominal cavity. This means we will cover her with antibiotics a bit longer, but overall she is doing well. I have to wait a bit until she is settled in the room then can go see her. I did get to give her a kiss and said said, "Mama!" so it was music to hear her voice.

1:00 Update: Things continue to go well. They are finishing things up right now and the surgeon will be out to talk soon. She will get to go right to her room and not recovery since she's already got a PICU bed.

11:30 Update: Just got another call. All is going well. Her colon is very enlarged. Taking their time to work it out and able to do things through the scope still, so thankful for skilled surgeons. Will update again in a couple of hours. They are hoping to know how long things will take at that point.

9:30 Update: The nurse just called and they've started the surgery. Everything is going as planned. She is doing well and they anticipate they can continue to work through the laparascope. They are planning to update again in 1.5-2 hours.

Maya came down to surgery around 7 this morning. They were able to premed her in her room upstairs so she was asleep when she came down and this helped her anxiety a lot. She was up part of last night, professing she would like to be an "owl" and stay up all night. Can't fault her for trying!

I'll post updates as they come. Thanks for all the prayers and support.

Holly

Wednesday, July 1, 2009 6:51 PM CDT

I want to start with the most important part which is we have had a great mini vacation here between appointments. She had her ice cream, her swim time, her zoo trip, time with friends, and so much mommy time we both just had a wonderful renewal of spirit. A much needed break from the day to day. The picture up top is from her time at the zoo feeding the birds.

We are working on getting settled. Today's procedure went well and she woke up doing just fine. Blood pressures are a bit high, but other than that she is a live wire and ready to go. She's so happy to see all her friends and so unsuspecting of what is to come. I should clarify, she knows, she is just pretending it isn't happening.

We are in room 501. I'll post the address and phone number at the bottom of the page since cell phones can't be used in the PICU.

We are suppose to go down between 7-7:30 tomorrow. They are going to do the ilieostomy since today's procedure showed we don't have the option of reconnecting right now.

I'll update tomorrow as we know more.

Holly

Sunday, June 28, 2009 9:41 AM CDT

I have a spotty internet connection at best so I'll try a quick update and see how it goes.

Maya is doing well. We went to Build-a-Bear on Friday after her appointment and then to the movie "UP" yesterday with a friend of ours here in Milwaukee. She's been most thrilled to water the flowers each night and watch Noggin on TV. I'm hoping to get her up and out again today to do something on her list, but she said she's planning a day on the couch. Guess we'll see where that leads. She's always busy studying her field guides to butterflies, flowers, and shells. She loves those books!

I'll try to update again after our appointment on Monday. Friday's appointment went well and we are all set for our Wednesday admission.

Holly

Wednesday, June 24, 2009 9:29 PM CDT

Our week has been cram packed with appointments and packing. Tomorrow is our last full day of things here in LaCrosse with three appointments and getting Pookie settled then we change tracks and prepare for her surgery and all that goes with that.

Maya still struggling with pain daily although this week we've seen some improvement in her ability to deal with the pain and push through her days. She's been enjoying her new Foof chair I picked up at a garage sale last weekend and resting while she watches her movies. She's also back to her game playing and challenging anyone who stops by to a game of Princesses or Sequence.

We are planning on trying to squeeze in a bit of fun while we are off to the clinic this weekend before she goes inpatient again. She has a little list of a few things she'd like to do including licking a chocolate ice cream cone "Two licks or maybe three", eating "just one very long french fry", going to see the flamingo's, putting "my feet in the water", and walk in the sand. So, I have my work cut out for me trying to meet her wishes for her big weekend.

Thanks for checking in.

Holly

Saturday, June 20, 2009 9:31 PM CDT

Sorry for the delay in updates. There is really nothing going on around here. maya still does not feel well at all so we lay low and she doesn't do much during the day other than rest and use her PCA pump for pain medication. We did labs on Friday and her phosphorus has finally returned to her normal value so we removed this from her TPN. She also had some improvement in her metabolic and liver numbers which was good to see. We continue on IV antibiotics and now have a set date for her surgery. The plan now is for July 2. That makes for a busy next 2 weeks. I think I have something going on every day between now and then.

This afternoon she did perk up for awhile and was able to paint rocks for her fairy garden with her friend Megan. I'll try and get some pictures posted later this week.

Holly

Tuesday, June 16, 2009 8:25 PM CDT

We are Home!!!!

A very tired Mama and a very tired Maya.

More later. Thanks to all of you who've continued to support us on our journey.

Holly

Monday, June 15, 2009 10:13 PM CDT

We are heading home in the AM (Tuesday)! So happy to be heading out of here. only a week! Pretty good for us.... Lovin' these short stays.

Maya's still sleepy and not herself, but maybe home will fix that. We'll be back here the end of next week for some outpatient appointments, but until then we'll enjoy being home.

Holly

Sunday, June 14, 2009 6:41 AM CDT

I think we'll head home Monday or Tuesday. She seems to be coming back to baseline and hopefully will continue to work her way there. Unfortunately baseline before this infection wasn't such a great place so while it may be we get there sooner it isn't necessarily a place we want to stay or be for long.

We've decided to go ahead and wait until our previously scheduled surgery date. With multi-organism sepsis the treatment time is generally 21 days for her so it wouldn't move things up too much. I think we need to leave it all alone and go as planned so we can plan and prepare.

Nothing much going on other than treating and waiting. She sleeps and complains of pain. In the midst of all of that she watches a bit of TV, listens to some stories, and in general just entertains herself for short snippets of time with her "friends" and her books.

Thanks for checking in. She loved her e-cards too so thanks too for those.

Holly

Friday, June 12, 2009 9:34 PM CDT

No real changes today. She's still sleepy, still having belly pain and we still have positive blood cultures. Hopefully we'll get some negative cultures soon and narrow down our antibiotics so we can escape.

She did do a bit of art therapy today and really enjoyed that. It's obvious she's not herself though since she asked to quit doing art after about 20 minutes. She was able to get PT today to work on her neck as her arms and hands are falling asleep all the time, especially when she's asleep.

Overall, just an average day here in Club Med.

holly

Thursday, June 11, 2009 9:59 AM CDT

And so it goes....

We really know nothing new. We chased some low blood pressures last night with fluids and she seemed to do fine. Got her heart rates down and and her b/p's back up. She's still fairly sleepy, but actually her labs and all her other numbers look good, in fact, better than they have been.

She was fairly dehydrated when we came, no idea why. Phos is still an issue, but that's simple enough to fix right now. Cultures are negative so far and they haven't heard back on her flu swabs.

She's sleeping now, hopefully she just needs a tank up and some rest to recover from this and head back home before we return next month.

Holly

Wednesday, June 10, 2009 7:48 AM CDT

Update: We are in the PICU. Not sure what is wrong. Electrolytes were off and she was running a temp. Still waiting to see what cultures show and until then running 3 antibiotics. I'll put our contact info at the bottom of the page. She is in isolation right now and I'm pretty much banned to the room and not allowed in the cafeteria or anything as she's been swabbed for everything and they are being extra careful with the influenza outbreak.

Yesterdays surgery went well. They used deep sedation to dilate and replace her J tube back to a 14 french which was where we originally were. She did well and we were out of there by about 6:30 last night. She's not having a great morning, but I'm hoping it's just because she's recovering from yesterday.

We stayed in Milwuakee last night in hopes of seeing pain team today. Still hoping to hear on that one. Just wanted to hop on and let everyone know how things were going. Will update once we are home or if something changes.

Holly

Friday, June 5, 2009 8:31 PM CDT

So, things haven't improved much around here. Maya's still not feeling well and we continue to have issues with her J-tube. After going to Milwaukee on Tuesday and thinking we had it fixed by Thursday we no longer had a functional tube and by mid-morning we didn't even have a tube at all. We now have something in to hold the spot partially open and will go back to Milwaukee on Tuesday and they will take her to the OR and try to figure out what is going on and if they need to revise the site during her July surgery.

She is loving her canopy still and we put a beanbag under it so she spends a lot of her time sitting here and napping beneath it. That will most likely be the extent of our weekend since she's not really feeling like doing too much of anything. Hoping she will feel well enough to stay home until Tuesday when we head back to Milwaukee.

Holly

Wednesday, June 3, 2009 7:19 AM CDT

We are home. We actually got here late last night. I was less than impressed that the surgeon didn't make a greater attempt to replace her tube, but rather settled for just putting in one a size smaller. I could have done that here at home and saved myself 8 hours of driving! Oh well, now we know it really didn't fit in there anymore! The plan is when she is under anesthesia for her surgery to go ahead and replace her tube and either dilate or cut the opening bigger so she is able to vent the way she needs to from the J. Her G vents really nice, but her J is less predictable. In fact, there are times I can remove the tube and get out several days worth of medications that must just be stuck in her intestine around the tube... yuck!

We did end up seeing Sniggledoodle too as Maya was not feeling well at all and had retched the entire way there. Her labs were less than stellar also and she just wasn't herself. We are making a couple of small changes in hope of better controlling her pain and also decreasing her bleeding. She was happy to see her hospital friends though and there is always a certain comfort in being there when things aren't going so well with her.

Today I'm planning on just letting her rest and recover, it's also her last day of speech therapy for the year since school is out next week. I want to get her in to see her friends too before school is out. The past few months have been so poor for her she never made it back to school this spring. She gets homebound services, but it's never the same is being with your friends.

Holly

Monday, June 1, 2009 9:05 PM CDT

We are having some issues here. With all Maya's pain and distention we had to take out her J tube and try to unplug it on Saturday. Unfortunately, it would not go back in... at all. We have a foley catheter in the stoma and will make the trip to Children's tomorrow to hopefully have it dilated and replaced or somehow repaired. We aren't clear on the problem so until we look at it it will be hard to say.

She also has a rash, Not sure what that is either. We did do blood cultures this evening so we aren't missing anything there hopefully and we'll just see how she does. She's having lots of bleeding issues so we know something is going on. Hopefully it will all work itself out with little intervention.

I'll update tomorrow after we return from Children's.

Holly

Saturday, May 30, 2009 4:49 PM CDT

We finally started work on Maya's fairy garden.

She was so excited to get the flowers planted and then to return to see a fairy had already been to visit.

This year we did a little more research and found that a "fairy fence is recommended surrounding the garden so we worked on that for a bit this afternoon and got some things we'd been setting aside arranged.

Now we just have to add sparkles here and there and other things that attract fairies which mostly entails building them little things from acorns, sticks, and such. Needless to say, we had lots of fun and Maya was thrilled to get to cross something else off her "summer fun list".

We also made her a canopy today to have for her reading time.

She really needs a safe place and a place to have her own quiet time so that's what I was working for. I was blessed enough to find everything I needed either already in the house or at rummage sales so it worked out wonderfully, she loves it.

On the surgery front it looks like it will be July before she can have enough OR time scheduled. We'll limp along until then trying the best we can to keep her pain managed and still providing her with quality of life and time being a kid and not in bed sleeping. She does pretty good pushing herself most days with a little distraction and her medications.

Thanks for continuing to check in. We love hearing from you and knowing you are out there thinking of us!

Holly

Thursday, May 28, 2009 9:31 PM CDT

Today was one of the best day's Maya's had this week. She was able to be up most of the day and not only had school for an hour, but also worked with her computer teacher for a bit this afternoon. We also had a doctor's appointment this morning so she was up and out of the house for a bit which was nice too.

Her labs were pretty good and we didn't make any changes to anything this week. Her weight is up which was nice to see also! The since her last infection she's been losing weight so it's nice to see her hitting a plateau and actually gaining an ounce or two.

This weekend we were at the park listening to a band play for Memorial Day. I was driving by the bandshell and commented to Maya they were playing the National Anthem. She paused for a moment to listen then asked, "could you have them turn that up? I can't hear it that well." Ummm, that's great, but it's a live band, short of yelling out the window for them to play louder it just wasn't going to happen, LOL!

For the most part we are still dealing with daily pain and she is coping, but unable to do a lot of the things she wishes she was out doing. I told her this weekend we'd work on her fairy garden since it is pretty low key and something she's really been wanting to do. I'll make sure I get some pictures to share.

Thanks for continuing to check in and think of us.

Holly

Sunday, May 24, 2009 2:02 PM CDT

Maya continues to struggle with pain. We've increased her PCA and her basal pain medication in an attempt to keep her more comfortable and wanting to get up and join the day. This morning she did get up for a few hours and wanted to "fly" so she put on her wings and off we went. She was able to fly around for about 15 minutes before needing to come home and rest. It was well worth the trip as it's been awhile since she's willingly wanted to get out of the house. (New pictures are on the photo page!)

We've been trying lots of distraction which includes many rounds of her favorite games... Sequence-States and Capitals, Peanut Butter and Jelly, Memory, and of course Pretty, Pretty Princess! She also has her daily dose of movies which for the past week and a half has only consisted of Barbie-Island Princes. Today she did move on to Barbie-Magic of the Rainbow and I must say for someone who claims to dislike Barbie as much as she does she's very hooked on her movies.

We continue with our postcard search and are 16 states short of completion. We've received several different countries and areas of each state which has been very fun to learn about the areas, but still need most of New England, Alaska, The Dakotas, Montana, Wyoming, Idaho, and Mississippi.

Still waiting on a surgery date for my little Butterfly, but planning to squeeze whatever fun she'll tolerate in until then. She's got a big summer list this year including her fairy garden, water fun, going across the Cass St Bridge in her wheelchair, bowling, and several other things I'm sure we can handle.

Holly

Tuesday, May 19, 2009 8:17 AM CDT

Well, we made out round trip to Milwaukee yesterday without much excitement. It's a lot of driving, but still easier to go for the day then spend the night. Maya did well with the 8 hours in the car and played her DS most of the way.

We had to see the surgeon and discussed her colectomy. We won't actually know until she's in for the surgery if they'll be able to reattach her or do the ileostomy. Our goal is to get better control over her pain by doing this. We also had a couple other appointments with neurology and such, but they were pretty uneventful and fairly quick. Overall, it was a pretty good trip.

This past week has been mostly a time to reorganize and try to get things in order after returning from a long hospital stay. It always takes awhile to regroup emotionally, mentally, and physically after having been gone. I think we are at the point now we are back in the rhythm of things.

Sunday we did venture out for a bit for some sun and fresh air. She really tires easily and doesn't have much endurance so mostly we've kept it to doctor and therapy visits. Around home she's been more and more herself. Right now she's very into the Barbie Island Princess movie so she's watched that over and over. She also spends lots of time just resting and talking with her "friend". RIght now her favorites are Pinkalicious (a pink unicorn), Little Maya, Tiny Maya, and a Reba CD. The other night I caught her talking to Reba and telling her how easy they could go fast by just saying "AReba, AReba!"

As you can see, not much has changed around here!

The rest of the week is school and therapy. One more doctor appointment on Thursday and hopefully a chance to rest and regain some of her stamina.

Holly

Thursday, May 14, 2009 10:08 PM CDT

Well, I think we are settled. At least, settled as much as we are going to be without really digging in and doing more intensive organizing, but I'm saving that for when we have a date we are going back.

Today we had an appointment with Maya's pediatrician. It went pretty well and things looked good. Her phos was still not really where it needed to be so we made a few changes and will recheck her labs again on Saturday. Monday we'll head back to Children's again, but just for the day.

Tomorrow we have PT in the morning since she's still somewhat ataxic and having trouble walking. She'll also try to do some school in the afternoon with her teacher. She doesn't last long, but each day she's pushing herself more and more so a couple of hours split up will be good for her.

Nothing else much exciting going on around here. Pookie is very happy we are home and has been glued to me since we walked in the door!

Holly

Thursday, May 14, 2009 10:08 PM CDT

Tuesday, May 12, 2009 9:30 PM CDT

We are HOME!!!!

Now the fun begins! We'll have a busy next few days getting settled and keeping up with things, but should settle into a routine shortly.

Will update soon.

Holly

Monday, May 11, 2009 6:09 PM CDT

We are leaving tomorrow. I have a car set to pick up in the morning and hopefully we can get out of here in the afternoon. It always takes longer when I have to get a car since I'm gone most of the morning arranging that and can't get things organized with her discharge, but it all works out in the end, just makes for a late arrival home.

We have to return next Monday already, but at least we'll have the weekend to rest up. I'm guessing we won't be out and about at all since we are trying to keep her healthy going into this next surgery. We also meet with the surgeon on Monday and neurology.

I'm sure Pookie will be glad to see us too. He's not use to being left for this long. He's had someone taking care of him of course, but he gets lonely.

We are so ready for our own beds, our own shower, and more than three choices for breakfast, lunch, and dinner.

Thanks for continuing on this journey with us, I'll be sure to update when we get home.

Holly

Saturday, May 9, 2009 4:56 PM CDT

Not a lot happening here today. Last night was rather exciting as we lost the use of one of her lumen for some unknown reason. We tried to TPA the line and could not get the TPA in then we tried to get vanco/hep in which the same result. When we tried to push the syringe her line actually ballooned out so we where being very careful not to rupture the line. After a few hours of attempting ot TPA her we did get it going again and then within an hour it quit on us again all over again. By morning it was working, but we did a line study to be sure we weren't dealing with a clot and just found it against the atrium wall which is nothing new. We must have cleared things with the TPA, but we need to have a line repair on Monday before the ballooning area bursts and we are 4 hours away.

Other then the above excitement we remain no track for a discharge Tuesday. Monday we'll have a meeting between GI, surgery, special needs, and I and make our future plans from there.

Maya is starting to feel better. She was able to do art therapy yesterday and has physical therapy. She's been busy with stickers and painting today and has been pleasantly occupied. She's loved all the ecards and has them hanging around her room. Thanks too for all the guestbook notes.

Holly

Thursday, May 7, 2009 6:03 AM CDT

Yesterday was a trying day. Miss Maya decided to see what all she could do to express her discontent and frustration. Thankfully by the end of the day she was either worn out or just beginning to realize it wasn't going to work because she was calming down and much more pleasant. In the midst of it all one thing she is loving right now is writing stories. She dictates and I write. When there is a word we have a sticker for we replace the word with the sticker so she can go back and read the story herself. She absolutely loves this and it's really fun to work with her when she's so into doing a project.

Medically speaking we are holding the course on antibiotics for the time being. We know she has 21 days to complete so we aren't quite half way there. We are still working on some electrolyte issues which is more what is keeping us here at this point. Right now we are hoping for a discharge next week, but this also depends on a discussion we are having with her special needs team today. There is an option on the table which may give us some better pain control option, but it's a huge step to take so we'll see. I'll update more on this later as I know what is going on.

Thanks for continuing to check in. We appreciate all the notes and ecards.
Without the support of so many people this would be difficult to endure, but knowing we are surrounded by such a caring group of people lifting us up helps us continue to push forward each day.

Holly

Tuesday, May 5, 2009 4:51 PM CDT

Today's procedures when pretty well. There was some confusion initially about if we were or weren't going to have the colonoscopy done, but we made an attempt and thankfully we did as we gained some good info.

Maya's EGD showed no ulcers, but she is bleeding fairly easily and her bladder on the scope there looked good although we are changing the types of catheters we use and discussed maybe doing a deflux injection again. The colonoscopy was not able to be computed due to dilated, loopy bowel and the risk of that being more than we were willing to take so that in itself was good info to know and the fact her bowel wall does not appear healthy or normal any longer. It's very atonic and not functioning correctly.

Now to take this info and discuss, process, and decide what if anything we want to do with it.

On a much better note it was awesome this morning when I was sitting visiting with the nurse and I heard Maya laugh out loud. It was a sound I hadn't heard in a while and was so genuine and free. She was watching something on Sesame Street and just roared. I think it was as good for my soul as for hers.

She also had art therapy this morning and worked hard and stretching and stamping. We even wrote a story using stamps and words. I took a picture and am going to try to post it tonight. She had PT also right before she went to the OR and was able to stand at the bedside which was also great.

All in all, a much better day... loving the improvements...

Holly

Monday, May 4, 2009 9:57 AM CDT

I just received a call from the insurance company, it went something like this...
"Ma'am, as of February 1, 2009 your daughter is no longer covered and has maxed out her lifetime on our policy. You have 63 days to find new coverage before she is considered not qualified due to a preexisting condition.. "
Well, lets see, if I do the math correctly my 63 days is up! Nice of them to give such prompt notice, and while we are in the PICU no less!

In other exciting news... Saturday night we were visited by the tooth fairy, seeing as Maya lost 7 teeth in just around an hour! Odd, yes... possible, yes... normal, no. My girl likes to mix things up, give people a run for their money. Speaking of money, the tooth fairy needed a wagon to pull of this haul. I mean, how do you compensate someone for losing about 1/3 of the teeth in their mouth in one night?

In other weekend news... I did laundry, Maya got her hair washed (for those of you who've been involved with her hair before you realize this is HUGE), she had an enema in prep for tomorrow's colonoscopy, we colored several picture of Hello Kitty, discussed our favorite colors (purple), flowers (daisy), pets (kitties), dolls (little Maya), blankets (music notes), place (Nana's house).

She's still scheduled for scopes tomorrow and will remain on her antibiotic coverage for 21 days (triple covered as of now).

Thanks for the continued prayers, notes, concern, and support both here and taking care of Pookie at home. She misses her Pookie dearly and cries each night at bedtime for him.

Holly

Saturday, May 2, 2009 1:52 PM CDT

Well, it looks like Maya won't go to the OR until Tuesday so we can get everyone who needs to be there coordinated to come at the same time. That's fine as long as it means only one trip down there and one time needing anesthesia. This will also give her an extra day to hopefully get herself over the hump and start feeling better. I'm use to her turning around quicker than she seems to be this time. Not sure if it is because of the type of sepsis she had or just where we are with her disease right now, but she really isn't coming around very quickly. Last night we struggled with her blood pressures and trying to keep those up to an acceptable range. They've been running low and her pain has been increasing again so today we increased her pain medication again and also put her back on the Meers monitor and are watching her CVP's. She's actually managed to drop her diastolic's into the 20's a few times.

Maya's skin is also causing her quite a bit of irritation. Dermatology felt it was related to her autonomic nerve issues causing her to have pain and then the tissue begins to slough off. When we did her bath this morning we found over 10 areas that are now open and/or red and needed treated. We are changing treatment for these and hopefully will get better control so she starts feeling better.

It's so different not to see her bouncing back as quickly as usual. She's still my little Mayafly when she is awake and feeling decent. In fact, last night she made up a song for her nurse while she was getting her ready for bed. She decided yesterday to call her day nurse "her majesty" and her night nurse "rock star". She keeps me laughing, that's for sure. I'm always amazed by her ability to take it all in stride no matter what. I can't imagine going through all she does and having the wonderful attitude about life that she lives. She never doubts who she is or why she is here. She never questions God why, even though she gets upset and will say she doesn't want to be sick or have pain anymore. She's such a trooper.

Thanks so much for the e-cards, calls, and emails. To be surrounded by people who care so much is what carries us through the day to day. We trust in God and we know all our earthly angels are here supporting us along the way. We could never do it alone and would never want to. I'm always asked how I do this "alone" as a single mom and my answer is always the same, I'm not alone and no matter what I'd go to the ends of the earth for this little girl.

Holly

Friday, May 1, 2009 11:47 PM CDT

Today was somewhat better as Maya seemed to have less pain and more control over how she was feeling. She slept for the most part, but did paint a picture this afternoon and made a card for her doctor who was leaving town today.

The weekend will be mostly just healing time for her, as usual not much happens here on the weekend and I anticipate it to be even slower than usual since they continue to restrict the hospital to just parents and staff. Monday she'll had an EGD, colonoscopy, cystoscopy, and vesicoscopy. We will need to do 21 days of IV antibiotics so we'll head home on those hopefully later next week.

She's still not the Maya's I'm use to so I'm hoping to see her start to turn around this weekend. Her labs are beginning to improve so hopefully soon so will she.

Holly

Thursday, April 30, 2009 1:12 PM CDT

I have very little computer time, but wanted to add a quick update.

Due to the flu outbreak here in Milwaukee they've closed schools and are only allowing healthy, non-symptomatic parents in the hospital. It's sort of strange as usually the halls and lobby are full of people and it's pretty quiet here now.

Maya's not having as good of a day today as she did yesterday. She had a rough night with pain and today just isn't feeling well and looks the part too. Usually she does a pretty good job of looking like she shouldn't be here, but today just isn't her day.

We do know some of what we are dealing with although full reports aren't back on everything yet so hopefully we can get her steroids weaned down a bit today and increase a few other meds to get her back to where she needs to be.

Yesterday she was up for some music therapy and spent a wonderful hour working with the music therapist. It is so good for her soul. You can tell it is such a healing, calming time for her to be surrounded by music.

Holly

Tuesday, April 28, 2009 3:59 PM CDT

I just lost my update as I timed out on the hospital's computer so this will be short. Maya's continuing to hold the course and we do know it is both gram positive and gram negative sepsis. Still waiting for full ID on those. She had a CT today and hopefully we'll see what that shows tomorrow and she'll have a few more consults then too. I believe the plan is to scope her next week also.

We are still trying to keep things low key here so we'd love calls and email, but limiting visits.

Again, thanks for the notes and e-cards.

Holly

Monday, April 27, 2009 9:56 PM CDT

We are at Children's. Maya was flown down late this afternoon and at this point is already growing something in her blood from cultures taken earlier today at Skemp. I am so thankful we have such a wonderful pediatrician who not only takes the time to listen, but is always there when we need her and cares for Maya so carefully. Maya again had issues with her phosphorus which we are correcting and some of her other electrolytes were a bit off, but her platelets were concerning also as this usually indicates a more overwhelming infection and right now they are pretty low.

So, we know little right now. We have her started on some antibiotics and will know more after morning and some additional labs are done. She has watched a little bit of a movie this evening and enjoyed the new rooms here in Children's new hospital tower. The rooms are much brighter and bigger than in the old hospital.

I've updated the contact info at the bottom. Feel free to call, but right now we are asking for no vistors.

I'll update as I know more.

Holly

Monday, April 27, 2009 10:03 AM CDT

Maya's not feeling well today. She never really got back to 100fter our trip as we were both hit with viruses and sore throats the last day were gone. Not sure if this is related or not. I'm taking her in this afternoon so we'll see where things go from there. I do know I'm going with my bags packed and won't be surprised if we end up inpatient at least for a day or too. Maybe I'll be lucky and be wrong... wouldn't be such a bad this to be wrong about!

Maya's been in bed most of the weekend, but enjoying Peter and the Wolf. I found a version by the Boston Pops that plays the symphony while doing a play along side the instrument that is playing to illustrate the story/music. She loves it and it's great to see her love of music shining through.

We are still working on her postcard project and are in search of 19 more states to complete the entire US! Our map is getting lots of pins in it as we are marking the location in each state where the postcards come from and some states we've received several so it's really fun to sit with her and flip through them all. I put them on a giant ring for her so she can just flip through them whenever she wants. We hang it next to the map and she tries to find their locations. If anyone knows anyone from the following states that could help us out that would be great!

Hawaii, Alaska, North Dakota, South Dakota, Wyoming, Montana, Idaho, Mississippi, South Carolina, Virginia, New jersey, Maine, Vermont, Mass, and most of the other New England States....

Sorry to cut this short, but Maya's calling and I need to get her into the doctor. Will update this evening.

Holly

Wednesday, April 22, 2009 7:55 PM CDT

Maya's had a rough couple of days, but I wanted to share some video with you of her Maya-Go-Round. As you know, Maya loves to spin... and spin... and spin. Knowing this, her Papa made her something she's dubbed the Maya-Go-Round. She loves it and it goes something like this......

Hopefully she'll be up and spinning soon.

If you missed our vacation slide shows you can click on the last two entries in the history to see her trip to Nashville.

Holly

Sunday, April 19, 2009 9:58 AM CDT

We're still recovering from our colds we brought back from Tennessee, but finally getting settled back in here at home. Pookie, of course, is glad to have us home and he's begging for lots of attention even when it means laying on top of my computer!

As far as our trip I think I left off on Monday. Monday we went to the Adventure Science Center in Nashville. Maya was in heaven as there was a room full of planets and computers with information on each of them. She could have stayed there forever, but much to her chagrin we drug her off to see the rest of the museum. There was a large part that focused on the human body and she was able to go down a slide that was the large intestine complete with sound effects! Too funny! She really got a kick out of it. I think the highlight for all the kids was climbing the 5 story tower through tunnels and different ladders to view the city from way above. Then there was a huge slide to exit the tower.

After the museum we were so close to downtown we ventured down Broadway and took in the sights and sounds of Nashville. Maya had a street performer play his sax for her right up close and in return she tried to take his sax home with her! That's my girl--straight forward and to the point.

Tuesday we had to slow it down and give her somewhat of a break. We did hit a few of the local thrift stores and other than that just played around the house and at the park.

Wednesday was our last day and we had to say goodbye to Auntie Jessy who was also there visiting. After saying goodbye we headed out to the airport to see where Papa worked and to meet his "friends" or as Maya says, his "ladies". After we did that we went to the zoo and were able to see two baby white bengal tigers who were there on loan for a short time. Maya was exhausted by that point so we headed home and packed up for our LONG trip home the next day.

It was a wonderful trip. I'm so thankful she was feeling pretty well and we were able to avoid any medical crisis while we were there. The issues we had were all able to be resolved by telephone with her doctors and once we got her pain under control better she had a wonderful time.

Enjoy the pics!

Friday, April 17, 2009 9:28 PM CDT

Thanks for being so patient for an update. We got home last night from visiting with Nana and Papa in Tennessee and it's been a whirlwind. We did so much while we were gone and took so many pictures I think I do entries the next couple nights so we can share more of our trip and not bore you all at once with too much info.

We left on Thursday last week and after 13 very long hours in the van with 3 kids arrived later that night. The kids were actually great. I think I was the one with the problem the last few hours.

Friday we went to the Opryland hotel and Opry Mills. Maya had a wonderful time. She loved the trip to the hotel and since it is full of gardens and flowers it was right up her alley. She also had a chance to feel the stingray's at Opry Mills and ride the carousel. She got to take 3 or 4 rides before Mama got too dizzy to help her ride any longer, LOL! This was the same day of the tornado's that went through Tennessee and thankfully missed us.

Saturday the kids got to enjoy their Easter baskets a day early since Sunday we were heading to church early and I really wanted Maya to focus on the real reason we were celebrating Easter. Later in the day we headed to Franklin, Tennessee where there was a home used as a hospital during the Battle of Franklin during the Civil War. We were able to tour the house and grounds which was really interesting and Maya enjoyed it a lot more than I thought she would. During the house tour she even participated by asking questions and did a really nice job asking. Of course, I did intercept a few questions that may have drawn a few interesting looks from the rest of the tour group.
After the tour we met another family from Wisconsin and had the chance to visit with them for a bit. It continually amazes me how God places people in your path no matter where you are. People that touch your life and take the time to share.

Sunday we were up and out early for church. Hard to believe we had everyone out the door just after 7am! There was a drama as part of the Easter service and wonderful music. Up until this time we were having more significant issues with Maya's behavior so just as I had the day before I held my breath as we entered a confined, quiet area, but she did great (ok-there was a little 'incident' after church with her trying to 'borrow' the Bible--LOL!) We were able to go after church to visit with my Aunt and Uncles which have never met Maya then headed downtown to see the capital which was on Maya's "Must Do" list. She had a blast and they really have a beautiful area around the capital building along with several historic areas.

I'll finish up tomorrow or Sunday, but wanted to give you a taste of Maya's week and need to get pictures uploaded. Today we had to face reality and head back to the doctor. Maya needed her labs done and had a sore throat. We had some issues with her labs and needed to make a few changes to things. She's been pretty wiped out today with lots of retching and just feeling yuck. Hopefully with her IVIG on board as of this afternoon and some rest she'll be back to feeling well soon.

Holly

Sunday, April 5, 2009 9:59 AM CDT

Wow, another week has escaped us!

As far as our postcards go, keep them coming. She is loving it and going to the mailbox each day is one of the most exciting parts of the day. She's doing great learning the map and finding where each postcard is from and putting a pin in the map. We've gotten cards from a few places in Europe too so we added a world map also. As far as the US goes we are up to 26 states. Thanks to all who've helped us with this.

Maya's been struggling this past week with lots of retching and belly pain. It's been awhile since we've had so much trouble with retching so I'm not sure what's up. Her liver enzymes are pretty elevated and may be the culprit too. Guess we'll see what this week brings.

Last week we had therapy early in the week which Maya loves although it really takes it toll on her. It's so fun to watch her spinning and gliding across the room on the swing! She also gets to do a lot of other fun things to help strengthen her and teach her to conserve her energy. We are doing some sensory teaching with her too as she needs a lot of sensory input and doesn't seem to process much of what she gets.

We also had to go to Milwaukee for a few days. Maya had several appointments that went pretty well. We were able to make some changes in her plan for pain medication and hopefully will get better control over how she's been feeling. The past month or so pain has become a real challenge with her which is totally unacceptable so we are making some changes that should really help with this.

While there we had time to visit with friends and took some time to see this guy!

Of course, we realize he's not the reason for the season, but she always enjoys a chat with a giant bunny!

Saturday she helped present an award to the local Harley Club as they help raise funds each year for the MDA and mito falls under the MDA umbrella. She loves doing things like this and thanking others for helping fund the research that goes to looking for answers for what we are dealing with.

We have a month off before needing to go back to Milwaukee so hopefully we can get in some fun spring things. Maya's really been wanting to go visit her firefighters so we are planning this for when we return from Tennessee. Right now she's pretty much focused on the fact there are only 4 days left until we leave to go see her Nana and Papa!

Sunday, March 29, 2009 1:23 PM CDT

Another week come and gone. They seem to fly by sometimes.

Maya had a pretty good end of the week and has had a great weekend.

After getting some blood last week she seemed to really regain some energy and then she also had IVIG which always seems to perk her up too.

She continues to eagerly anticipate our trip to Tennessee and is counting down the days to seeing her Nana and Papa. She also is looking forward to Easter and she and Megan painted some beautiful crosses yesterday as one of their Saturday projects.

The map/postcard project continues to keep her busy and she is up to 20 states. She loves to go to the mailbox and see what new places she's going to get to explore. It's been really fun and at least twice a day she takes her postcards which we've placed on binder rings and flips through them exploring new places. Since we got a touch of snow last night it's been a fun way to bring in spring here even when the outdoors doesn't seem to want to cooperate.

This week she has PT and OT along with a couple of days worth of a trip to Milwaukee to see several people over there. She has a full couple of days then we can turn our focus onto packing for our trip.

I am updating the photo page too since it's been quite awhile since I've done so. I'm also considering changing the format here over to the new Caringbridge style with the email updates, but not sure yet if I'm ready to make the change.

Holly

Tuesday, March 24, 2009 8:34 AM CDT

POSTCARD UPDATE!! For those of you who've participated in our project thank you so much. Maya has 19 states covered so far and loves to put her pins in the states as they arrive. I'll take some pictures and post them this week. If you aren't aware of what she's doing she's trying to collect a postcard from each state and we are tracking them on a large map that now graces my living room wall! Maya loves geography and she loves collections so this has been such a blessing to help pass these last days of winter with fun and anticipation.

Sorry for the delay. We've been busy around here the past week. Last week we went to Milwaukee for appointments on Wednesday and then she had PT on Thursday and then saw the doctor here in town on Friday. Her labs looked good on Friday so it was pretty uneventful. Saturday she had a friend over to play and they had lots of fun.

Saturday night I went to put her to bed and noticed she was bleeding from her G-tube. She's bled from her tube before, but this was a lot of bleeding so I decided to watch it overnight and see what happened. Sunday was basically more bleeding from her tube so yesterday we did labs and ended up needing to transfuse her yesterday as she's lost quite a bit of blood. The bleeding has stopped and the pain improved though so hopefully we are over this crisis. We ended up not getting home from the hospital until after 10pm last night and then she was up all night not feeling well so the days are starting to get long. Hopefully we are over the worst of this episode and she'll start feeling better.

Sunday we had to say goodbye to a little friend of Maya's and the daughter of a friend of mine. Kendra was just 5 years old and also was TPN dependent. She'd LIVED her entire life dealing with medical issues and lost her battle on 3/18. Maya didn't go to the funeral, but it's been difficult for her to say goodbye and grasp this loss. She'd played with Kendra in the hospital several times and we've known the family since Kendra was a baby. Please remember her family in your prayers as I know they are just beginning to cope with this loss.

Thanks for checking in on us and I'll be sure to update later this week.

Holly

Monday, March 16, 2009 8:24 AM CDT

I'll try this again, it hasn't worked all weekend as I can't keep a signal on my computer, but I did want to update that Maya had a wonderful Gotcha Day and enjoyed all the well wishes from everyone.

We had a nice weekend. Saturday Maya got together with her friend Megan to play. They played outside since we had nice sunny springish weather and they enjoyed doing some crafts too. Yesterday we went to church and Maya wasn't feeling well so she came home and slept all afternoon then all night too. She seems to be feeling a little bit better today so hopefully it was just a one day thing.

This week is a busy week with therapy, a trip to Milwaukee, a couple of local appointments and all the usual weekly stuff with school and Maya's care. I have some more pictures to update once my computer decides to cooperate long enough to upload them.

The postcard collecting is going pretty well. She loves going to the box each day and looking for her postcards. We are punching holes in them and have them on a large ring hanging by the map. She puts a map pin in the map for the location of each card. We still need lots of states so if you have a minute we'd love it if you'd be willing to participate in our project.

Thursday, March 12, 2009

Happy Gotcha Day Mayafly! It's hard to believe it's been 8 years since you entered my life. You've changed me so much and my life is so blessed for having you a part of it. I thank God each day I spend with you and have learned so many lessons from you over these 8 years. When I prayed many years ago for god to find my little girl for me he knew just how to find my perfect match. Mama loves you!

(The following slide show is about 7 minutes long so grab a cup of coffee and settle in)

Make photo slide shows at www.OneTrueMedia.com

Tuesday, March 10, 2009 8:30 PM CDT

Maya continues on in her project of collecting post cards from each of the states and other locations. She's having so much fun seeing where the next card will be from. So far she has 11 post cards and she's gotten a big map and we are marking it as each one comes it. She spends a lot of her day pouring over her map and post cards and is having so much fun. It's been a highlight to her winter and a bright spot for her. If you would like to participate our address is at the bottom. She's hoping to collect a post card from each state so if you know anyone else who'd be willing to drop a card in the mail too we'd appreciate it.

Today Maya had a school trip to our local Children's Museum. Maya had a blast. She was even able to wear her TPN for a bit when she climbed the "skin" wall and played in the mini Kwik trip. It was nice to see her out playing and having such a good time, but hard to face the reality of her coming home and being so worn out and not feeling well.

She wrote a silly story...

Learned facts about snot...

Played in a firetruck...

Shopped at the Kwik Trip...

Played cashier at the Kwik Trip

Climbed a wall of skin...

And explored..the art...of the fart...

Holly

Sunday, March 8, 2009 8:01 PM CDT

If you haven't hear about Maya's postcard project, please click on past journal entries to read the last entry with info on what she's doing....

We had a good weekend. After a pretty rough week last week, Friday started a turn around and then was followed by a good weekend. We stayed around home and Maya eagerly studied her map talking about all the pins she's hoping to get to stick in it to mark where her postcards have come from. Right now we've just marked where she lives, her cousin in Ohio, her Auntie Jessy in Indiana, and Nana and Papa in Tennessee. She just wanted to see where everyone lived in relation to each other.

Saturday we build "steps" and (re)discovered the slinky...

In the afternoon Megan came over and they painted, played games and Maya tired to accompany Megan on the recorder. Sorry to say I didn't catch that on video, LOL, just count yourselves blessed on that one!

Needless to say, she was exhausted Saturday night. She was pretty low key today too. All worth it in small doses though as she looks forward to her time with Megan each week.

(She had to sleep with all her Penguins, Gloria, Gloria's baby, Gloria's mommy, and Gloria's little sister!

I've started a sensory diet with her, this is part of what's helping our days go better. I'll try to get some pictures and explain later this week.

Thanks for continuing to check in.

Holly

Tuesday, March 3, 2009 9:35 PM CST

As I've said before we have so many people who take the time to come here each day and read and support us through prayer and notes of encouragement. We thank you all for this. One of the special people in our lives came up with an idea a few weeks back and asked me if I'd go ahead and post this on Maya's page in addition to the others she's asked to participate....

Hello Fellow Members of the Maya & Holly Fan Club,

I�m also a big fan of the girls so I asked for an opportunity to post to tell you about a plan that will make Maya & Holly make it through the winter with a little more anticipation and smiles.

Since Maya is a geography buff and Holly likes travel I think it would be nice for them to receive postcards (or little things) from as many places as we can send from.

For things received from the U.S. I will match a state quarter for each state she gets a postcard from. So you will be making them happier & richer too J

So ready, set, go!!!! Let the mailings begin.

Jeanine

(our PO box is posted at the bottom of the page)

On another note, today we ventured out to something other than a doctor's appointment! We headed out to the library to pick up some new books and a few movies for the week. Maya of course had to find a new book about the states and we found a really neat one that has pictures of all the state capital buildings. It was fun to look at all the differences and has opened us up to several different ideas for projects we are going to combine with the above as part of her schooling we do here at home. She has a teacher that comes each day for an hour and also speech therapy and her computer teacher that come during the week, but I also try to spend time each day doing other projects with her to cover areas she's interested in and there isn't time to cover in her home sessions. We are able to split this time over the day as she feels able and is resting. As we work on this project we'll make sure to take pictures and I'll have her do some entries here about what she's doing too.

Holly

Monday, March 2, 2009 8:42 PM CST

Our weekend was pretty quiet. Maya didn't feel well at all on Saturday so she stayed in bed all day and slept on and off. Sunday seemed to be a better day for her and she got up and played more. She built a set of steps of books for her slinky and worked on her map of the USA puzzle. She loves geography and studying all the states and what is important about them along with their capitals. She's doing a pretty good job and loves to have contests with me to see who knows more. She's so funny because she always seems so amazed when I happen to know one that she doesn't.

Today she was able to use her WebCam to attend her music class with the other kids. She was so excited as they are learning to play the recorder and she is loving it. She practices each day and is really enjoying it. I'll have to video her and post it once she "masters" one of her songs.

We have a fairly busy week with school and speech along with a doctor appointment and physical therapy on Thursday. Tomorrow she's hoping to go to the library and pick out some new books. We've been reading a lot more each day and she's really enjoying it. Usually we read at least once during the day and then again at bedtime. Of course, in true Maya style the bedtime list of books is the exact same each night. I think we BOTH have them memorized.

Thanks for checking in on us and we'll update soon. I'm going to try to remember my camera when she goes to PT so she can share all the fun she has there.

Holly

Wednesday, February 25, 2009 10:18 PM CST

Maya's had an OK week. She seems to tire pretty easily, but is up and out of bed each day and able to participate when her speech therapist and teacher come each day. Today we also had to venture out to the doctor so we stopped by the library on the way home since it was a beautiful day in the 40's and sunny. She picked out some new books for us to read together and we borrowed a copy of Caddie Woodlawn to watch together sometime this week. I love watching movies with her from stories I loved as a kid. She doesn't quite have the ability to follow the stories as much when I read them so some of the more complex ones like Anne of Green Gables and such we like to find the movies and watch then and then follow up with the book so she has some idea of what we are reading about.

Her labs were OK today. Still has one value we are struggling to get down where it belongs and instead it keeps climbing, but everything else looked better than the last ones we drew. She's fairly distended, but it doesn't seem to bother her much more than usual except she couldn't wear her favorite skirt today.

Tomorrow we are expecting snow again. I wish the great outdoors would make up it's mind what season this is. Oh well, maybe she'll get another chance to take a trip in her sled again this week. Maya's so funny each morning because she pulls back her curtains and looks outside and if there is any snow or frost on the ground she groans and growls, crosses her arms and say. "I am NOT getting UP until SPRING!"

Thanks for continuing to check in on us.

Holly

Sunday, February 22, 2009 9:43 PM CST

Today we ventured out much to Maya's dismay and headed to Family Fest. Once we got there she had a good time although she tired quickly and was ready to come home for a nap after a couple of hours. She did enjoy meeting her old pal Ronald McDonald and playing some games.

Here she is with her buddy Ronald...

Playing soccer with a blue fuzzy monster she wasn't real sure about...

And one of her favorite events of the day was seeing a presentation by the National Eagle Center on bald eagles. This gals name was Harriet and she was 29 years old and had broken a wing in a car accident 10 years ago. She was beautiful and Maya was captivated. She loves nature so much.

So, after such an exciting day she's tucked snugly in bed and hopefully will have a better week this week. We did some additional labs on Friday that show she is having some biliary congestion and this is causing the rise in some of her liver numbers we've been seeing, not sure if this is connected to her increased pain or not, but I'm hoping we can make some progress with these issues soon and get her feeling more like herself.

Maya funny: Tonight as we were reading our library books and talking about feelings and emotions I asked her if there was things that made her scared too (one of the subjects of the books). She turned and said, when I'm in the hopistal I'm scared I'm never going to get to come home! At that point a thousand things ran through my head and I began to wonder how to answer and how to reassure her about her illness and was just overwhelmed with sadness for her.........but then she followed it up with........"because our van isn't there and it's too far to walk!" OK, that, fear I can handle. I was so glad that was the extent of what she was talking about.

Holly

Friday, February 20, 2009 3:09 PM CST

I'm often overwhelmed by the amount of love and support showered upon us. I don't always express it, but today I wanted to pop on here and take the time to thank so many of you who have made the past couple of weeks so much brighter for Maya. She's really not had a great couple of weeks from many aspects and although she goes along and continues trying to push to do all the things a little girl must do each day (care for her babies, play ponies, watch movies, make crafts, learn new things and play her games) she's not feeling her best. She's had an increase in the amount of pain she's having and hasn't had a whole lot of good days.

Each day there has been something: a phone call, an e-mail/guestbook note, card/package in the mail, or a visit from her friends; something was always there to make the day brighter. Many of you took the time to make sure she knew how much she was loved on Valentines and so many more than that are there each day with prayers and thoughts that are the backbone of our survival.

We are all a team, uplifting an amazing little girl though each up and down and watching her grown and learn and yet through it all we remain..a team. A group of people who support us as we make this journey.

Thank you to each of you who continue to hold us up.

Holly and Maya

Wednesday, February 18, 2009 9:06 AM CST

Sorry for the lack of updates.

We had a fairly quiet weekend. Maya's friend Megan came over to play on Saturday and I was able to go to church on Sunday since I had someone for respite on Sunday. We are still trying to watch Maya's exposure to infections as much as we can right now. Monday we had a surprise visit from her favorite firefighters with a fun Valentine for her. She was thrilled to see them even though she really didn't feel well at all. Thanks guys for taking the time to think of her!

Monday Maya had a really bad migraine. We did get some medication ordered that seemed to help and she was able to sleep finally Monday night and didn't have a headache again until this morning. Today doesn't seem as bad as Monday so she may just have a headache and not a migraine. She was able to do school yesterday afternoon for a bit and I'm hoping she'll be up to doing speech and school today. We really aren't sure why she's not been feeling as well this week. She's still on IV antibiotics from her last infection so it doesn't seem likely it's her line.

Not not much else going on here. Thanks for checking in.

Holly

Thursday, February 12, 2009 9:15 PM CST

Not a whole lot new going on here. Maya's had a rough couple of days, but overall is doing well. She's not been very comfortable and has needed some extra IV fluids, but hopefully it's just a little "bump" in the road.

I'm not sure I've mentioned it, but one of the highlights of her day is watching Deal or No Deal every evening before bed. In face, when asked a yes no questions I'm often answered with "deal" or "no deal". She talks about Howie like he's one of the family and keeps telling me how all she wants to do is go on the show and hold the case that has the number 10 on it because that is her favorite number! I found teh Deal or No Deal board game at Goodwill yesterday so needless to say that's been what we've done in much of our free time.

Thanks for checking in on us. Will update soon and hopefully have pictures to update at this point.

Holly

Sunday, February 8, 2009 10:12 PM CST

We had a wonderful weekend. The girls made some Valentine crafts on Saturday including candy necklaces and valentines for their friends and then played games and on the Wii. We are so thankful Maya has such a loving, wonderful friend to play with each week. I'm not really sure she's ever really had a girlfriend she's gotten to hang out with on a regular basis and this has been such a wonderful experience for her.

On another note, the new medication we've been using is making the most wonderful changes in my little Mayafly. Without going into a lot of detail I just want to say it is so wonderful to have the wonderful little girl back that's been missing for way too long. To see her so happy and full of love just makes my heart swell. She crawls in my lab to have her reading time, plays and focuses so well, and has been wonderful with her kitty again.

Today she spent the morning with her respite worker, Mandy while I went to church and then we took a nap before making a few more valentines and then she got some good playtime in while I got some things done around the house.

Yep, pretty normal around here...how awesome is that?!

Holly

Thursday, February 5, 2009 2:57 PM CST

Today was clinic day. Things looked good. Labs were as good as they have been for quite awhile and she felt fairly good while we were there too. I'm always happy when people get the chance to see her feeling/looking so good since it often feels things aren't quite that way when we go out.

Other than that things have been pretty low key and relaxed here at home. Maya's been playing and resting intermittently. She's so glad to be home and back in the swing of her routine with school and speech therapy. We heard from PT and OT this week and will hopefully get started soon with them again. Next week is also her dental appointment along with the pediatrician again on Thursday.

Saturday she has plans to get together with a friend and do some Valentine crafts and make her school valentines so she's very excited. She love Valentine's Day and all the fun that comes along with it.

Maya Funny: Yesterday while learning the meaning of XOXO (hugs and kisses) she started laughing at the thought of kisses and hugs (OXOX) so now she is saying "I love you OX!" (I love you kiss and hug!)

Holly

Tuesday, February 3, 2009 3:59 PM CST

I'll update more later, but wanted to let everyone know we are home safe and sound. Now comes the transition and settling back into our routine. Didn't have internet until just now so that's why the delay in letting you all know.

Holly

Sunday, February 1, 2009 9:48 AM CST

We are going to get out of here tomorrow! Yipee for short stays and "easy" bugs.

Maya's doing well. She slept about 36 hours and then woke up this morning like nothing was wrong so it must have been what she needed to get her body back to feeling well. She's been very calm and pleasant today although a bit sensitive about seemingly small things, but after what she's just been through I guess she has that right for a day or two.

Last night we started a new medication. I'm anxious to see how it works for her. We were able to get rid of one and start this one in it's place so it wasn't a matter of adding something to her already long list of meds, but this was much needed and I hope makes a big difference in her day to day living.

I really have no Maya funnies since she just woke up for the first time since early Friday night. I'm sure it won't take long for her to come up with something though, she's always so full of it!

Thanks for checking in and the wonderful notes of encouragement.

Holly

Friday, January 30, 2009 12:05 AM CST

We've had a busy, busy morning. We are now moved up to IICU. Miss Maya is glad to be back where she is comfortable and use to having thing in "her" room. She doesn't really like change so the fact she consistently goes to the same place is really good for her.

We had a visitor from home today. One of her firefighters stopped by since he was in town and said HI. Unfortunately it was just as we were moving so it was a bit crazy, but so nice to see him and Maya was thrilled to have the visit.

Her blood culture from Wednesday did end up growing out a gram bug so we are waiting to have it ID'd and see what the plan is from there. She's improving with time and we appreciate all the prayers and notes.

Me-just happy to have a chance to take a shower as now we have a bathroom in our room. It's the little things that make a Mama happy here at Club Med.

I changed the contact info at the bottom of the page.

Holly

Thursday, January 29, 2009 5:14 PM CST

Maya decided to have a drop in her blood pressure during the night so she was started on stress dose steroids again. This is fairly typical of how she responds to sepsis. She also had a significant drop in her hgb and platelets overnight so she is getting a unit of blood now and we'll see if she needs another unit tomorrow. Her phosphorus is still low, but improving.

Tomorrow she'll get labs again and we'll see what direction things are moving. her cultures are still negative so it's hard to know what the issue was here initiating all of these problems. If they remain negative there will be the decision on how long to continue antibiotics or if to continue them at all.

Today she's played on and off and enjoyed the company of her nurses. Our nurses have taken good care of us and are making her time pleasant here for her. We played on the computer this afternoon for a bit and she enjoyed catching up on her Hello Kitty episodes and watching Tom and Jerry.

Holly

Wednesday, January 28, 2009 9:39 PM CST

Unfortunately no news is not good news.

We are in the PICU at Children's. The past several days have been a flurry of activity. We saw several different doctor's and made a few changes. Each day it seemed there was a little sign that maybe something was going on with her as far as an infection. Today she began having episodes of chills and her temp went up to 103 so we went ahead and drew blood cultures and labs. Knowing she had no other symptoms we had to begin treating her for the infection, but the plan was to go back and just spend the night somewhere outpatient then go home tomorrow after 24 hours of antibiotics and giving the cultures 24 hours to grow, but her labs came back with a critical phosphorus so we are here in PICU 2 waiting on cultures and trying to bring her phosphorus back up.

I'll update tomorrow as I'm sure I'll know more info at taht time.

Holly

Friday, January 23, 2009 6:45 PM CST

This week has been exhausting. Maya's doing OK physically, but there are some other issues going on with here that are just as taxing on her and wearing on those caring for her. Hopefully we'll get some direction this coming week when we go to Milwaukee. We'll be there Monday through Wednesday if anyone wants to get together.

Pookie is also very sick and requiring fluids, antibiotics, and pain medication daily none of which can be given orally. It's quite the interesting place around here.

Maya did have school this week and did very well. Her IEP was also this week and went very well too. Today she had PT and OT and hopefully we can begin to set up her home program soon to work with her PT and OT program at the clinic. For OT we are trying a bunch of new sensory things to help her. I'm excited to see how it all turns out.

This weekend we hope to take a break from the drama of the week behind up and just enjoy some time together and with our friends.

Thanks for checking in.

Holly

Sunday, January 18, 2009 5:26 PM CST

Sorry there still hasn't been much posting. We've pretty much been homebound and then with the weather we haven't even had out usual people coming into our home so there hasn't been too much to say. Notice I didn't say quiet, that's because much to some people surprise, my little girl is far from quiet. She spends her nights talking to her fuzzy pals in her room and her days singing, playing her keyboard, and talking to me. She's a constant whir of activity, even when her little body is hardly moving. Her mind is always in the midst of adventure. She's been through pirate voyages, space explorations, swam with mermaids, and flown with the fairies this week all without ever leaving the apartment. She's crafted, played games, read books, and created adventure more times than I can count over the past week. She amazes me. The things she remembers, the things she questions...

This week she has PT, OT, Speech and her teacher from school, a doctor appointment and IVIG. It should prove to be a busy on and I'm sure I'll have more to write. Next week we have a big week in Milwaukee so I need to get things in order for that trip this week too. Lots of planning and packing to get things the way they need to be to make it a success.

Thanks for checking in.

Monday, January 12, 2009 5:28 PM CST

The week has begun and I'm already tired. Today she had speech and school then some time with her DHH teacher. She did really well and was happy to finish working on her pop bottle experiment with her speech teacher. (the picture is actually from last week, but this is what they are working on and she LOVES it)

Yesterday she had her Megan time. She was so excited to work on her projects and play Wii with her friend.

Today was a lab day again. Pretty much things were the same as last Thursday so we'll return to the doctor again on Thursday after we see OT and PT on Tuesday, so basically, another busy week with school each day and a couple days of speech.

Thanks for checking.

Holly

Saturday, January 10, 2009 9:41 AM CST

Wow, I'm slipping, I had no idea it had been a week since I'd updated. Sorry, the time just got away from me.

Our week was full of activity. Sunday Maya had her friend Megan over to play and then Monday it was back to school. Since it's cold and flu season back to school meant homebound schooling started up for her. Monday she had her teacher and speech therapy and then each day this week she had her teacher while she had speech a couple of days and then her computer teacher yesterday. Somewhere in there we fit in two doctor's appointments and a bit of fun so we were busy all week.

Her labs this week seemed to be a bit off so we'll recheck those on Monday. She's been having symptoms of a urinary tract infection so we are waiting on the results of the culture. She's also been dealing with some abdominal pain we are hoping will improve as her labs improve.

Promise to be better this week about updates. I have new pictures to add too.

Maya funny: This week the roads were fairly icy and while driving one afternoon the van started to slide. Without thinking I said, "Oh crap". Maya piped up from the back of the van and said, "Mama, when you said that I know it's time to talk to Jesus!" She then started praying. Such a sweet girl, not only is she funny, she has my back and she certainly knows who to turn to when times get a little rough.

Holly

Saturday, January 3, 2009 6:54 PM CST

This weeks been quiet. We've been able to spend lots of time together playing new games, reading new books, and exploring new interests. It's so wonderful to see her thirst for new things and also to see her imagination expanding when she plays on her own. She got so many wonderful books this Christmas that we've really enjoyed exploring together and also a game of states and capitals that is testing my knowledge of American geography and a nice break from some of the other games we've been playing the past few months. She's in love with all her pony's still and is forever having an adventure with her doll Kaya. The difference in her when she is in control over her energy and how she uses it is amazing. She spends a lot of time resting, but when she's up she's full speed ahead. On the days we have to venture out to the doctor or for other reasons she's like a different kid. She usually will need to be woken up and will end up not feeling well and dragging early in the day and just not functioning at the same level.

We've already started our list of things she wants to do this spring and summer. All she wants to do this winter is sled, ice skate, and go bowling all of which we will do and other than ice skating we've already done at least once. This summer she has told me she wants to go back to Ohio to visit her cousin again, sing around the piano with her Uncle Mitch, play croquet (this is all Sesame Streets fault, that's where she got the idea), and go fishing. It's been kind of fun making these plans and is helping us get through the harsh Wisconsin winter.

Thanks for checkin in on us, as always we love hearing from you!

Holly

Wednesday, December 31, 2008 7:57 PM CST

Today as Dublin rang in the new year, so did we. It was 6pm here in LaCrosse, but bedtime loomed before us so we rang in the new year with those in Dublin (Via the internet). It was complete with party hats, celebration poppers, singing, and fireworks (also via the internet). We even counted down and watched the ball drop in New York. It was video of last years drop, but we loved our celebrating none the less. She was thrilled to celebrate and ring in the New Year grown up style!

May God Bless you all this coming year!

Holly

Sunday, December 28, 2008 10:06 PM CST

I hope everyone had a Merry Christmas. Maya had a really nice time and we were very blessed this year as always. We enjoyed using the webcam to have Christmas morning with Nana, Papa and Auntie Jessy. We also spent some time doing other things together including making "gingerbread" houses as you can see from above. Since Christmas we've spent much of our time playing board games as she got several new ones and it's one of her favorite things to do.

We had a fairly quiet weekend and she slept most of today. Her labs have been a bit off kilter and after talking with her doctor on Friday he felt we needed to do cultures which have remained negative, but some of the symptoms she gets when things aren't quite right continue such as daily bloody noses and sores on her skin. No fevers so we'll see what the week brings there.

We are hoping to get together with her friend on Tuesday as she really missed her this weekend and then Wednesday she goes back to the doctor.

Thanks for all the Christmas well wishes, sorry for the delay in updating, I'll be better this week and try to get some Christmas pictures posted too.

Holly

Wednesday, December 24, 2008 5:30 PM CST

As I promised and as you can see above we had a big morning today!

It started like this...

In case you can't see what she's looking it. It was this...

She could hardly breath. She kept saying, "my firefighters are here!" "my guys came to see me!" LIttle did she know, the big guy himself came along to deliver something she's wanted for a couple of years. She's been wanting a sled that's big enough to strap on her bag and for me to be able to pull her through the neighborhood.. Not only did she get a sled, but it was PURPLE. She had so much fun visiting and we are so thankful to be blessed with such a visit.

Thank Santa and Onalaska Fire and Police Departments!

Tuesday, December 23, 2008 7:20 PM CST

Maya's not been feeling well at all. We did labs and a liver ultrasound which showed a dialated common bile duct. We'll recheck labs on Friday and go from there. She did have a few good hours this afternoon and played Princess Wii with her respite worker while I stopped by the school to thank the wonderful team of people who work with her (well the ones I could fine) for Christmas and dropped of their gifts. I was also able to run to the grocery to pick up some Christmas comfort foods.

Tomorrow we have big excitement happening here. You'll have to check back tomorrow for pictures!! I really hope she's feeling better so she can enjoy the next couple days. She's started to run a low grade temp today so we have all fingers and toes crossed here.

Holly

Monday, December 22, 2008 6:04 AM CST

We had a rough weekend on and off. She did have some good hours each afternoon and was out of bed and playful both days during that time. Right now the countdown to Christmas is the first thing she wants to review each morning and then double check each night before falling to sleep.

Today we are off to the doctor and hoping to stay warm. Tomorrow it's back to more snow. Over 25 inches so far this month. They are saying after the additional 5 inches tonight we'll be on record as the snowiest December ever.

Here is a little article written about Maya's experience last Christmas at Children's. It ran in several paper's today including our local paper. Santa Article

Holly

Tuesday, December 16, 2008 3:55 PM CST

Things have been busy here. We've been working on finishing up our antibiotics from her last infection and this past week were also on another antibiotic as part of her regular rotation of meds for her gut. These are all IV so finding the time to add these on top of her regular meds with just the two lines to work with is a challenge. Thankfully we can run 3-4 things in a line at a time on the one side. The past few days she's not been feeling well at all and her labs reflect this. I'm hoping it's just from the fun and chaos of the past birthday week and her school performance. I'd have thought things would have improved by now, but it don't seem like we are going that direction. She did make it to speech therapy and to PE and music today. They played field hockey in PE and she decided when she grows up she wants to play hockey!

She's really enjoyed getting Christmas cards and hanging them up around the house and all the other fun that goes along with celebrating this wonderful season. We're working hard to focus each day on the reason for Christmas and it's been fun to have her trying to read the Christmas story back to me each evening. Tomorrow the van goes back in for more work and then Thursday she's back to the doctor. Friday we are planning a fun time bowling with her class from school.

Holly

Thursday, December 11, 2008 9:56 PM CST

I can't believe in a few short hours my little girl is going to be TEN! There was a time I never thought this day would come. As hard as it is to see your little girl grow up, it's so wonderful to see her grow up. I know that doesn't make a lot of sense, but when you are faces with the chance of not getting to see your child grow into adulthood each birthday is bittersweet. Anyhow, enough of that stuff.

Tonight was the big music performance for the 4th graders at Maya's school. She made it through and did a great job. It was so wonderful to see her among all the kids on the stage and enjoying herself. The kids are so accepting and good to her and she just follows along even after missing the last couple of weeks. Thankfully I was busy running a video camera and regular camera so it helped me not get all teary watching her. The kids all did such a great job and it turned out really nice.

Tomorrow they perform for the school and then on Saturday we are going to go celebrate with her friend for the day. More to come on that later! Next week we are hoping to do something with a few of her friends from school.

Here are a few pics from the past few days....

Getting ready to go...

At her concert...

This one is from practice, but it shows the whole group...

Tuesday, December 9, 2008 6:40 PM CST

Today there was lots of snow. I like spring and fall, but snow is fun too. We did not have school today so I didn't get to go to music. I did get to go out in the van to help my Mama drive. There was snow on the road and you couldn't see the lines. I don't like it when you can't see the lines so I talked to Jesus while my Mama drove the van.

I got fairies in the mail today. They are very fun to play with. After we had to ride in the van I was very tired so I got to play on the couch with my fairies before I took my nap.

Tomorrow I get to go sing at school. I can't wait to see my friends again.

Maya

Monday, December 8, 2008 3:41 PM CST

Maya is still mostly sleeping and resting in bed. Her pain continues to be the biggest thing we are dealing with although it is improving enough that she played a few hours yesterday in bed and this morning too. She's able to focus enough to watch a movie now and then too which is also an improvement from a few days ago. Tomorrow she'd like to try and go to music class at school since they are practicing for her performance on Thursday so we'll see how that goes. I'm sure it will wipe her out.

Labs looked good this morning which was a welcome thing to see and she's not run any temps so I think from an infection standpoint we are on the right track. It is more that metabolically her body is just coping with things.

Thanks for continuing to check in on us.

Holly

Saturday, December 6, 2008 11:07 AM CST

We are home, but it's not all been easy going. Maya slept from yesterday morning about 11am until about 10am this morning. The only times she was awake was when her pain woke her and we worked on getting her comfortable again. She's still using a lot of pain medication and her belly is really bothering her. We are hoping it will resolve itself or at least stay at bay until after the holidays when we can try and address it further. She really deserves a birthday and Christmas here at home. It's been a few years since we've had that enjoyment of celebrating in the comfort of our own home. Although everything is done to make the holiday's special in the hospital it still isn't home.

Last night we got snow and now it's cold and blowing all over. Looks like winter is here to stay. I think this is the 2nd or 3rd snow in in the past couple of weeks. Maya's tucked in for the day so other than shoveling we're warm here at home.

This week is suppose to be her music program. Hopefully she'll be up to at least coming during school to sing with her class. I don't anticipate she'll tolerate the evening program for the parents and the rate she's going now. Her birthday is also this week on the 12th so we'd like to do something special then too.

Thanks for checking in, the well wishes, the prayers, and the support you always give us and especially during our hospital stays.

Holly

Wednesday, December 3, 2008 12:05 AM CST

Home Tomorrow!

We are both so excited to get home and see Pookie who I'm sure is very lonely by this time. It's been a long haul, but things are doing better and she seems to be on the road to recovery. We'll continue antibiotics for another couple of weeks and then we'll see how things go from there. We've made a few other med changes that seem to be helping too, the biggest thing being sleep.

She's doing art therapy right now and is very happy with that. She loves art. She's drawn several pictures of Pookie and is quick to tear up when talking about him she misses him so much. She also misses her friend Megan a lot and gets teary talking about her too. Thankfully everyone is trying to keep her busy with school, PT, art, movies, etc.

Holly

Monday, December 1, 2008 6:01 PM CST

What a busy day. Maya started her day with an ultrasound of her liver, had a line study, saw several doctors, had school and PT and played with childlife so needless to say she is exhausted.

We are hoping to get out of here on Wednesday, but will know for sure tomorrow. She'll need to complete the rest of 21 days of antibiotics (2) and then hopefully will be set again for awhile.

We are both looking forward to getting home and our own beds and getting ready to enjoy the Christmas season.

Holly

Friday, November 28, 2008 4:01 PM CST

Today has been quieter. Maya's doing about the same as yesterday although her belly is a bit more distended. She continues to battle belly pain greater than her baseline and we are hoping that Monday's testing will show us more as to what that is about. The positive news is she's more restful at night and playful for periods during the day. Mostly she stays snuggled up "reading" and watching her shows. Today the chaplain brought her a Bible so she's thrilled with that. She's been telling Jesus stories for much of the afternoon.

We have a sweet little friend in the PICU, please keep her in your prayers as she's facing a rough time right now.

Holly

Thursday, November 27, 2008 11:51 AM CST

Happy Thanksgiving! We have so much to be thankful for today. Although we are in the hospital we still have many things to be thankful for... friends, family, wonderful doctor's and nurses, a supportive group of people who surround us.

Maya's busy sorting. We are in a holding pattern waiting to see what happens with her gut, her liver, and continuing to treat her infection. We are doing some daily testing to see what is going to happen from here with her lower intestines and Monday we'll repeat her ultrasound of her liver to reevaluate her bile duct. We did get some answers from hematology and had a venogram yesterday so the issues with her line are settled and there is a plan in place.

I hope everyone has a wonderful day.

Holly

Wednesday, November 26, 2008 10:04 AM CST

Maya is improving little by little. It's always good to see her spirit creep back and her want to watch TV or play with her Pony cards or whatever else her current obsession is. We are going to wean her steroids today and see if her blood pressure will remain happy with that decision and keep an eye on her heart rate as last night her heart got a bit lazy and slowed down quite a bit. She has dysautonomia so sometimes her body does thing for no good reason. This morning she's already given her nurse a mini Spanish lesson and explained to the respiratory therapist the best way to use an inhaler. We did get a PT consult and she'll see GI today also to address the issues with her common bile duct. Her belly is still huge and the pain seems to come in waves. We tried a few things to decompress her last night that were not fun and didn't work so we wait.

Thanks for checking in and for the continued prayers.

Holly

Tuesday, November 25, 2008 3:19 PM CST

We moved rooms so I changed the contact info at the bottom of the page. She ended up pretty restless through the night, but slept all morning until about 2pm this afternoon. A much needed sleep for sure. Her platelets and hgb continue to drop so we ended up doing an ultrasound of her line and also of her liver to see if there were any issues there. Her belly remains pretty distended and she's fairly uncomfortable.

We still don't have an ID on the organism yet so we'll see what that turns up to be, but it seems to be responding to the combination of antibiotics we are on and her temps are more manageable.

Thanks for the wonderful notes and prayers.

Holly

Monday, November 24, 2008 6:49 AM CST

update: Maya's in the PICU at Children's. We miss our 4th floor buddies, but for now we need the PICU (or so I'm told). Transport went well and we had one of our team that we always enjoy seeing. he's quite entertaining. Her cultures began to grow within 4 hours so we are dealing with a gram negative but just not sure which one. I updated our contact info at the bottom and will update after rounds tomorrow.

Maya is not well. We are waiting on daylight and the pediatricians office to call. Bags are packed and by the door, house is clean, kitty is well fed, and I'm not guessing we'll be home this afternoon.

I'm not sure what is wrong, but the amount of pain she is having is like nothing we've dealt with since her gall bladder when bad a few years ago. She is miserable and although she's the Queen of Distraction and the Princess of all that is Fun it's is short lived and she still dissolves into moans and tears over time. I have to say, thank goodness my mom and dad brought her birthday and Christmas gifts when the visited last month and so willingly told me to dole them out at my own discretion as this is what has gotten us through this weekend. A few DVD's, a kitty hot water bottle and a nice warm blanket and the world seemed a little brighter (and warmer) to her.

She did so well at her harvest dance. Smiled and pushed herself to the point of exhaustion, collapsing in my lap after she was finished (pictures to come of her dancing). It's been downhill since then, but when she wants to do something there is no brick wall that can stop her. She's reverting to her own place now, something she does to cope. Talking with her "friends", whispering secrets, sharing her pain. She doesn't like to say much otherwise, you learn more by observation. Her "friends" though, they know all. Right now, her best friend is "flopsy". A black and white kitty hot water bottle, much like the real live Pookie who's curled up next to me here, staring knowingly at the packed bags sitting next to the front door.

And so we wait...

Thursday, November 20, 2008 7:42 AM CST

Not much new to report here. Maya's not had a great week, but it's been OK. She did make it to school on Tuesday for music, PE, speech, and some work with her teacher. We also were able to visit with Kipper for awhile yesterday. Most of yesterday she stayed in bed with belly pain and a headache. Not sure what exactly is going on there, but hopefully today will be better. She sees the doctor this morning then has her final practice for the fall harvest dance at school later this morning. Tomorrow afternoon they do their dances for the parents so she's really looking forward to that. We are dealing with nosebleeds again almost daily. She's been packed a couple of times now, but it seems to only slow things down for a day or two then they are back in full force.

We got new flooring this week. It's vinyl so it's much easier for her to get around without stumbling and so much easier to keep clean. It turned out really nice so it was worth the hassle of moving everything around to get it done.

Thanks for continuing to check in on us. We loving hearing from you and knowing you are walking along side us on this journey.

Holly

Monday, November 17, 2008 9:37 AM CST

We are having quite a morning already. She's had two bloody noses since midnight and is now sleeping. Having a lot of pain today, a lot more than usual and really not feeling well at all. Our floors are being installed today. They said it would take two days, but the mess is amazing. It's so small in here we are stacked upon ourselves just trying to make room for them to work on the flooring. Basically we crammed everything we own into the bedrooms as they are doing the kitchen, living, and dining area. Overall it will be a good change, just something to get use to, but so much cleaner and safer for her needs.

Saturday her friend Megan came to play and the girls had a great time doing their nails and playing Wii.

They played some other games too and made some cute little picture frames for their backpacks.

She was thrilled to have her friend over and spends all week waiting for Saturday so Megan can come back and play again.

Holly

Wednesday, November 12, 2008 7:28 PM CST

If you didn't get the chance to check out Connor's House click on history to read yesterday's post...

Holly

Today I went to school and had speech, school, PE, and music. I was VERY busy. I had fun in school and had fun working on my dance and in music.

I'm tired tonight. Tomorrow I have to see the doctor and we go to the library. I also have Sarah tomorrow for my computer teacher. Monday we get new floors and I can do all the puzzles I want! Yippee! My ponies are happy too.

Maya

Tuesday, November 11, 2008 8:50 PM CST

Please take a minute to check out a project a friend of ours is starting in memory and celebration of her son Connor's life. Connor's House.

We have so much to be grateful for today.... everyday for that matter. I'm so thankful for men and women who've pledged their lives and their time to protect us and our country and am so thankful we take days such as today to celebrate their sacrifices. I'm thankful as the ice and cold rain started to fall today I had a warm house to come home to. I'm thankful that as I drive on the wintery roads I have new tires to navigate those journeys. I'm thankful that my daughter still wants to cuddle up and read with me when we go to bed at night. I'm thankful I have a nurse to help care for Maya sometimes so I can enjoy the company of friends when the opportunity arises and so she doesn't have to fare the elements as I run errands. I'm so thankful I can come here each day and share our lives and know there are many out there sharing this journey with us in prayer, in spirit, in laughter, or however they best can join us.

Holly

Sunday, November 9, 2008 4:34 PM CST

Today Mandy came over so my Mama could go get grocery food. We played 11 games! It was VERY fun. I love Mandy.

Yesterday I did not feel very good, but my friend Megan came over to play. We made cards and watched Annie. We made picture frames too and played games. I like games, but not as much as I like Megan.

I feel a little better today. Tomorrow I go back to school!

Maya

Friday, November 7, 2008 6:07 PM CST

I don't feel good today. I did get to do my webcam, but we didn't have any sound so we just made faces at each other. It was very funny. I really like all my friends...

Visiting with my friends on the webcam...

I was making a face at my friends....

One of my friends making a face....

Another friend making a face....

This is my teacher saying goodbye!

Thursday, November 6, 2008 7:14 PM CST

Today I went to the doctor. I had to get yucky nose packing. I hope my nose doesn't bleed anymore or I will be even more madder they put this stuff up my nose. My doctor and my Mama said that this will help my nose not bleed anymore. Afterwards I got to pick out a pony, not a real pony, but a My Little Pony. I picked out Toola Roola. I love Ponyville.

Yesterday I had school and speech. My belly hurt so that was all I did. The other day I got to do my singing and dancing. I get to do it again on Monday too! I want my belly to feel better soon, sometimes it's no fun to have my belly.

This weekend my friend Megan is coming over. We are going to play games and watch a movie. We are going to do a craft maybe too if she wants to. Her mom comes to to hang out with my mom. They are boring sometimes.

Maya

note from mom: Maya seems to be having more belly pain this afternoon. Not sure if it is from all the bloody noses (at least once a day-she's packed now though) or if it is something else. Her liver labs look like it's a bit stressed so that may be the source too. Time will tell, just trying to keep her comfortable and distracted. Overall she seems to be doing well though and very into pretending this week.

holly

Tuesday, November 4, 2008 6:39 PM CST

Today was school. I had PE with Leslie and Music. We are learning to dance in PE for our show and learning America songs in music for our concert. I love to sing and dance so I am glad I got to go. The dancing is in November and the singing is in December. Yesterday we walked to school! Our van was getting worked on. It was fun. We talked about trees. I learned about birch and maple trees and how some trees lose there leaves in the winter and some keep there needles. I also took turns with my Mama thanking God for the things we saw that God made on the way there. We had errands on the way home so it took us over an hour to walk home. I slept and let Mama do the work.

On Sunday my friend Megan came over to play and our Mama's talked and we all watched the new Pixie Hollow movie. I watch it all the time now, but that was my first time. I love Faries and My Little Pony's. For Halloween my firemen got me a Pinkie Pie pony so today I took my money from my bank and got a Rainbow Dash to play with her.

Maya

Saturday, November 1, 2008 10:46 PM CDT

Today was not a good Maya day. She was just really worn out from the week we just had. By the time trick-or-treat rolled around last night she didn't even want to leave the house. We went a couple of our neighboring apartments to share her costume with them and she was finished. It was a great day though. Her nurse came with treats in the morning and then helped us get to the hospital so we could go visit and show her costume to all our friends there. She loved trick or treating there and I must say she made out like a bandit. After we went there we stopped by the fire station and painted her pumpkin and took a tour of the fire station. She loves hanging out with her friends there and they had a treat for her too. (by the way guys-she's watched the movie about 20x so far!) Last night she left her candy out for the Candy Fairy and was treated to a few new books this morning so she was thrilled and so was the Candy Fairy!

Thanks to everyone who made my Butterfly's day special. We cherish each moment we get to make a memory and enjoy time. Tonight as I lay in bed reading to her we were looking at her room and I asked her what her favorite thing was in her whole entire bed room. She thought for a moment, then turned to me and said, "you laying here next to me." If that isn't enough to pull at a Mama's heart strings I'm not sure what is.

Holly

Thursday, October 30, 2008 8:43 PM CDT

It's been a busy week. We had Milwaukee on Monday, Bowling Tuesday, Chinese Acrobats on Wednesday, another doctor appointment and x-ray today and the biggest anticipation of the week.... Trick-or-Treat tomorrow. Well, you can guess what all this equals, one very , very tired little girl. She is quickly crashing and burning. I only hope she can make it through tomorrow night as she is eager anticipating the day. She's is such a "high" state due to the excitement she is developing open sores on her belly and chin and her behavior is going down the tubes. I will share a few pictures from our week and what we like to call "the very angry butterfly" (that's Pookie by the way *grin)

Thanks for continuing to be here for us on our journey. We are so greatly blessed.

Tuesday, October 28, 2008 3:11 PM CDT

Our trip to Milwaukee went well yesterday. Not uneventful, but well. The eventful stuff had to do with our vehicle and not our health so I guess it isn't as exciting. Anyhow, we are home, but without transportation for the time being. Hopefully this will get resolved soon and we'll have SAFE, reliable transportation soon.

The BIG news is....drumroll....

Maya got to go bowling with her friends today. Her class from school went bowling and she was invited along. She looked forward to it so much this morning I thought she would be too exhausted to go. They even worked out transportation for us since usually I drive her to and fro. She had so much fun and crashed when she got home. She was mid sentence, mid through, mid movement when she just dropped from pure exhaustion, but it was so worth it. She cheered for the kids and herself and had so much fun. She did come home and say, "But I didn't get a strike Mama!" She saw the other kids getting strikes and I explained it takes practice and she was OK with that. She did a good job letting the girls help her out and the girls did a great job helping her. I love to watch the kids work together and just treat her nicely.

Medically all is well. We have a few things we need to follow up on from yesterday. An x-ray and some labs. No big changes, just a few things to watch and some more instruction on her stress steroid dosing for the cortisol/adrenal issues.

Holly

Friday, October 24, 2008 4:24 PM CDT

My Nana and Papa left yesterday. They had to go back to Tennessee. They took their dogs Sammy and Molly with them. I like Molly. Pookie is happy the dogs are gone, now he doesn't have to share his water with them. He's not good at sharing like me!

I went to school today. I did school with Miss Deb and speech too. Yesterday I did PE with Leslie and had Music. I really like to sing. Today I have computer with Sarah too. I use co-writer to do my school.

In a couple days we go to Milwaukee. I get to see Sniggledoodle. I get to see Crazy Mary and maybe Dr Pepper too. I like to call my people funny names. It makes me very happy to laugh.

Note from the Mama: Maya's doing OK. She's still fighting some sort of viral stuff sounding congested this afternoon after waking from her nap. She sounded good this morning though so maybe we are close to getting over it. We are missing Nana and Papa already. Monday we'll head to Milwaukee to see neurology, special needs, and endocrine. Hopefully we can make the trip in a day, it depends if my eyelids will stay open or not!

Holly

Wednesday, October 22, 2008 10:34 AM CDT

I just realized it's been nearly a week since I updated. Maya's not been in the mood and then the past few days we've been visiting with Nana and Papa so our computer time has been limited.

Maya's got what seems to be a cold with a sore throat, but not too bad. She's been resting and is very happy to finally be back to straight cathing and not using a foley cath any longer. We are straight cathing ever two to three hours just as before and it seems to be working great so we'll stick with that and hope things continue that way.

Hopefully we'll see the doctor in the morning then make it to school after that. Friday we are planning school again if all goes well. Tomorrow are PE and music and she loves music so we need to make it for at least music. We are back on schedule with PT starting next week also as her PT's been out. Sunday and Monday we'll be in Milwaukee for clinic appointments.

Will update soon and get some new pictures on here. Thanks for sticking with us and continuing to walk along side and encourage us on our journey.

Holly

Friday, October 17, 2008 8:26 PM CDT

The week is finally over. It's been a long one.

Maya is feeling a little bit better, but still unhappy much of the time with having to leave her catheter in until Monday. We haven't been able to use her vesicostomy yet, but Monday is the big day. I'm hoping all works well when we can use it again and we can put this all behind us for awhile. She seems to have such a problem with bladder spasms. We did the botox for this and it seems to be kicking in so at least that piece is improving.

Nana and Papa are coming Sunday for a visit which should be fun. I hope Maya feels well enough to enjoy their visit and we can have some fun while they are here. Even if we just hang here on the couch I know she'll be thrilled to see them and spend time with them. We both will.

We only have one doctor appointment this week in addition to labs then we'll be back to Milwaukee the following week. It'll be nice to have this week at home.

Hopefully I'll get Maya online this weekend to update you on her point of view.

Holly

Tuesday, October 14, 2008 3:23 PM CDT

As I said last night, all went pretty well and we are HOME! Hard to believe in such a short time. she doesn't usually follow the rules like this, LOL!

She is still having pain and nausea today and is very tired which is not usual for her after surgery, but her throat is sore and such so maybe that is part of it. We'll see how things play out, but at least we are home for now and will hopefully stay here.

She's watching her Pony's on TV and laying on the couch right now with Pookie. Always a good place to be.

Thanks for all the prayers the past few days.

Holly

Monday, October 13, 2008 5:23 PM CDT

Surgery went fine. It took a couple of hours but they were able to get both the deflux and the botox done. She's been having lots of retching post op. We are hoping it is just from being behind on meds. She's unhappy about needing a foley for the next week again, but adjusting to the thought the more she wakes up and the less she thinks about it.

She's on the phone with her pony pals right now (from My Little Pony) and as long as she lays flat doesn't start retching. Hopefully tonight will go well and we can head out of here by late morning. Kind of weird to be in and out in a day! A nice weird, but still weird. :)

Holly

Saturday, October 11, 2008 5:36 PM CDT

Today my mom and me went to the park. We collected stuff and made pretty fall pictures. I got tired, but took a rest then got to play with my BIG box some more. My Mama took lots of pictures of me at the park and I tried to run her over with my chair. Here are pictures of what we did today......

Maya

Thursday, October 9, 2008 8:50 PM CDT

Yesterday we had some wheelchair adjustments done and ordered some modifications for her chair. I'm looking forward to seeing how the changes work and hopefully it will make it easier for her and help some of the issues we've been dealing with.

Today was her visit to the pediatrician. Her labs aren't really where we'd like to see them and she's not been feeling so well. The thought is she's dealing with something viral, but it's not real clear. We are going to keep and eye on her over the weekend and make a decision on Monday as to if we'll go forward with her surgery on Monday or not. Hopefully things will go fine and we can get this behind us.

Other than that Maya's been on the quiet side. She has her up moments and feels good then, but she's sleeping a lot and having a lot of down time. No big plans between now and Monday, just laying low and hoping to get on top of whatever this is.

Holly

Tuesday, October 7, 2008 5:15 PM CDT

Today I went to school. I went to school yesterday too. Today was my PE with Leslie. She helps me do what my class is doing and then I had music which is my favorite. I worked with Deb then on the computer and spelling after that. Yesterday I wrote a letter on the computer to Mr Kline and also had speech. I was so tired I fell asleep on the way home both two days! I didn't wake up until school this morning, but now I am awake again because my mom said it is too early to go back to bed. I am going to watch my Pony movie again. I watch it over 100 times! It drives my Mama CRAZY! I like to laugh at her when she is CRAZY!

Tomorrow I get my wheelchair adjusted and see someone knew at the other hopistal then I see my other doctor on Thursday. I am busy. Monday is my surgery in Milwaukee. I'm going to take my Pony movie with me. I LOVE My LIttle Pony. Pinkie Pie is my favorite. Rainbow Dash is fun too. Some have wings and horns. I'm going to have wings and a horn when I grow up too.

Mom's note: I know there was some confusion, but her surgery is Monday the 13th in Milwaukee. Hopefully just a couple of days there then home again. We are looking forward to hopefully improving a few issues we are having with her bladder and cathing. She's been having trouble with endurance this week. Waking up retching and retching in her sleep after school.

Saturday, October 4, 2008 8:05 PM CDT

Today I went to see my firefighters. It was very fun. I got to see a very funny clown and he put a ladder on his chin. Then I got to use a BIG fire hose and make the water come out.

After we did that we saw a very big fire and watched them make it go away. Fires are very big and you have to be careful.

We also go to see the trucks. My favorite one has a very big ladder way up in the sky. They have lots of different areas with tools and things in them to help people. It is a very neat place to be. i got a hat and a stuffed doggie too. I love my dog and am going to sleep with it. First I named it Wormy Jeremy, but I changed the name to Bingo!

After the fire station we went and looked at things and I got new jammies for the hospital next week. I have to go to the hospital on Monday. I was looking for slippers, but didn't find any. I found a lot of things for Santa to bring me too. My mama said Santa will have a broken back if I don't make my list shorter.

Mama's note: Her hospital stay is next Monday the 13th. She is having some work done on her bladder. We'll be in Milwaukee.

Wednesday, October 1, 2008 9:03 PM CDT

Today was a quiet day. She slept and stayed in bed until after noon and then got up to shower and played on the computer for a bit, napped, listened to some stories, a movie, back to bed. Anymore it is just the way things go. Always balancing her energy, her body's ability to push on and although the will is always there, they body sometimes has to be reminded to just slow down and recover. By this evening, she was thinking, walking, speaking, and laughing much more like the little girl I know. Tomorrow she sees physical medicine and hopefully we can get some guidance as to how we can better help with her pain and balance. Pain is once again such a issue. Belly and knee along with almost constant bladder spasms.

On a more Maya note...today she decided she needed to make me a chart. I was told I'd earn stickers as I followed the chart and for every five stickers I'd get a hug and I could trade in my hugs for kisses and other things most people just take for granted from their children! On my chart there was cathing (her), braiding (her hair), turning on the fan (hers), turning off the hall light (she likes it dark at night), and getting out the "right" blanket (again, hers). Apparently, she's tired of reminding me of our night routine and would like me to start remembering things on my own....the first time around, before she has to remind me, and in the order she prefers it. I'm good with it, but I swear if she starts timing me and giving me time out's for forgetting things I'm out of the deal! LOL!

Holly

Tuesday, September 30, 2008 2:51 PM CDT

Hi everybody. I haven't been feeling very good. I do have good times every day for a little bit, but I'm tired and have more pain. We are going to see two of my doctor's this week to try to figure out how to make my pain go away and make me feel better. Each day we try to have some fun too.

Maya

Note from Mom: Maya's only had at the most 2-3 hours a day of "good" awake time. We aren't sure what is going on, but she quickly wears down and just isn't herself. She continues to be my hero though. Pushes herself as hard as she can and has fun through it all. In the past few days we had a friend here as his family was taking care of his brother who needed some medical care out of town and also we got to go to Specialfesters on our way home from PT today. Maya did make it to school for a bit yesterday, but quickly wore out, much as she did today.

Thanks for all the notes and thoughtful comments in the guestbook. You make this journey so much easier.

Holly

Friday, September 26, 2008 10:02 PM CDT

Still home, cultures cooking, CBC done, temps lower, but bouncing about, knee pain, belly pain. She still is acting good enough I have a hard time believing this is a line issue. Time will tell though. We'll lay low this weekend. Too much fun coming up this next week to take a chance with wearing her out or getting her further run down and letting this bug or whatever it is take over. She really wants to get over and see her firefighters this week too, so that and Oktoberfest are on our agenda for the next week.

holly

Thursday, September 25, 2008 9:45 PM CDT

Fever, headaches, sores....here we go again.

Will update as I know more. We are home, for now.

Tuesday, September 23, 2008 7:26 PM CDT

Hi everybody! I've been very busy. Sunday I went to Grace Place at church and Mandy went with me so my Mama could go to big church. Monday I got to go to school. It was fun. I had speech therapy and then I went to work with my teacher Miss Deb before going to Mr Kline's class and sharing my memory box. There were TEN things in my memory box:

-A flag from India
-A fire truck
-A shell
-A picture of my cousin Autumn
-A picture of my Nana and Papa
-My Heron pictures
-A picture of when Mimi (Hello Kitty's sister) when to Hawaii
-A flat penny from Disney world
-A picture of Aubrey and Me riding the tea cups
-A Hello Kitty that my hopistal friends used to make my birthday happy

Today I had some school at home and went across a VERY big road in my power chair. (I had help). It was VERY, VERY BIG!

Maya

Saturday, September 20, 2008 9:42 PM CDT

Maya played with her friends today.....

And she bossed them around.....

She also got a new chair that will make life much easier. Right now she just wants to sit in it and watch TV, but it will be great for school and just running errands in town as she gets pretty tired when she is out and about. We haven't been out much though since she's currently addicted to My Little Pony-Live on Stage! (DVD).

Lots coming up in the next few weeks. Next weekend is the Oktoberfest parade, we are planning on going to visit with "her" firefighters again soon, and all the other fun fall activities that happen each year.

Holly

Wednesday, September 17, 2008 7:55 PM CDT

Wow! 3 days of school in a row. Pretty good for Miss Mayafly. She went about 2 hours each day and did great. Of course today we had to see the doctor first and then went so after school she came home and went to sleep about 2pm and is still sleeping, I'm guessing for the night. Not sure if that is worth it or not, but we'll see. We are off to Milwaukee again tomorrow anyhow, so maybe she'll rest in the van--ok I doubt it since she rarely does, but one can hope!

We found out today they aren't going to let her go swimming with school.. Obviously with her line our idea of swimming is modified. The plan was to let her go sit on the steps with her feet in the water and watch her friends and be able to feel a part of it. Apparently this is "unsafe" Not sure how this is as her legs are fine, no open areas, nothing and her lines, tubes would not be in or near the water, but whatever. Interesting you can swim with a g-tube and diaper, but can't put your feet in if you have a line. OH well, we'll do our own thing. Not like we haven't all along.

Hopefully next week we'll be starting PT and OT. She's needed these for awhile and has had orders, but we've had trouble getting things set up so that's on the agenda for next week. I'm not sure if this will cut into her time at school, but she needs it. I made the mistake of letting her walk too much in PE today and we are paying for it as she sleeps and thrashes around moaning. Her legs just don't tolerate that much activity. I'm usually better about using her chair to get her to an activity, but sometimes I lose site and just want it to seem "normal". Anyhow, we learned our lesson and things should go better now.

Maya is so enjoying her classmates and spending time with them. They are the most kind, receptive group of young kids we've had in school and really take the time to make her feel a part of the class. It's wonderful to have a teacher and class that want her there and a part of what's going on.

Please keep our dear friend Olivia in your prayers tonight. She's been struggling for more than a week and remains in the PICU.

Holly

Monday, September 15, 2008 7:46 PM CDT

Saturday I played with Mandy when my mom did her work. Mandy and I played lots of games and made lots of little masks with pumpkins and cats on them.

Sunday my friend Megan came over so my mom could talk to her mom and we played Wii and I was good at it. I was doing a lot of cheering for me! Megan was even better than me. She didn't even need cheering, she was just good.

Today I went to school. I got to see all my friends and some gave me their pictures. I went to music and we signed and sang songs. I also had speech and Miss Deb. I am going to school tomorrow too, but now I am going to bed.

Friday, September 12, 2008 10:00 PM CDT

We've gone full circle in just over a week.

From the first day of school

To being flown to Milwaukee

To feeling better and playing with friends

One last test before coming home

And home safe in my own bed....

Wednesday, September 10, 2008 7:33 PM CDT

We are home! Actually we arrived late last evening, but it's taken me this long to have 2 minutes to get to the computer. Things are keeping me hopping, but going well. We'll get labs done again tomorrow to see where things stand. We did find out she has some adrenal dysfunction so we've had to address that and will be treating this infection for awhile, but that's about it.

I'll try and get Maya online tomorrow to do her own update and add some pictures. She has lots to share about her week too.

Thanks for all the prayers, notes, calls, etc during our brief stay at club med.

Holly

Monday, September 8, 2008 11:34 PM CDT

Today seemed long, yesterday was even longer. I think that means it's time to go home? Maya's spent lots of time cutting and glueing. When she's awake she either wants to cut or glue, nothing else. Well, that is unless her friend, one of the medical students comes by then it is beading, beading, beading. Of course in the midst of all this she is napping. She is so tired all the time, hardly can keep her eyes open, but not willing to waste more than a moment at a time sleeping.

Blood pressures are still low and she is putting out more than we put in when it comes to fluids so we saw endocrine today and did some testing we should know the results of in the morning. She's still having "spells" so she'll get an EEG tomorrow before we can head home.

She's really not herself, but not so much "sick" either. Hard to define, but I can't remember seeing her like this before. I'm looking forward to making the escape although she has to remain on several antibiotics to cover what she grew so it's never a simple thing.

Our buddy Alex is heading home tomorrow. The kids really enjoy each other's company so we'll miss him. I'll miss having his mom to talk to and walk down to pick up lunch or something to drink. Hopefully thought we'll be heading out too and maybe even someday the kids will get together somewhere other than the hospital, but we live in opposite directions.

Thanks for the ecards and notes in her guestbook. She's loved hearing from her class at school and "her" firefighters. She has to pull out her "cards" with all the fire truck pictures on them periodically and share them with whoever is in our room.

Holly

Sunday, September 7, 2008 11:15 AM CDT

Last night Maya slept from 4 pm until about 7:30 this morning. This was after 2 naps during the day yesterday so she is working with all she has to fight this infection and listening to her body so she is sleeping. Today she's more awake, but taking frequent cat naps. We also had a bit of a "gluey" problem as she tried to do some gluing of her pajama's to her blanket! All in a day's crafting. She did have a play date yesterday with her buddy Alex who is also here and they colored together. So fun to hear them talk to each other.

Today she wants to learn about lobster.......always a good sign. I figure as soon as Hello Kitty returns we'll be good to go.

Holly

Saturday, September 6, 2008 10:15 AM CDT

Maya slept well last night and even wanted Mama to snuggle with her. She's already invited me to sleep with her again tonight and that means my back will be much happier as she not only is in a real bed, but also has an air mattress because of her skin issues. Besides who doesn't want to snuggle with a butterfly?

We haven't seen her labs this morning since the computer system is down, but do know she continues to grow bugs in her line. They have finally been able to "re-grow" the one bug they need to so they can figure out what meds will work best for it. She's grown this before and it's anaerobic so difficult to make grow. Now if her body could just do the same thing!

She's still pretty sleepy. We are wondering if maybe it is some subclinical seizure activity as she will be fine then just get spacey and fall asleep so we'll check her seizure med levels today and see where they are.

She was happy yesterday when she received some "Hello Cowey" stickers. They are little cows that look like Hello Kitty. She promptly dubbed herself, Maya Cowey since the doc usually calls her Maya Pookie.

Thanks for checking in and the ecards. Maya really enjoyed them. She's hoping today to visit with her buddy Alex who's on the other side of the floor.

Holly

Friday, September 5, 2008 7:59 AM CDT

Maya is looking better than she did yesterday. Her eyes are much less swollen and she is sitting up and watching TV. Number wise her labs don't really look better and in fact several are moving the wrong direction. She is jaundice and some of her electrolytes aren't cooperating and moving in the wrong direction too. We do know she has an infection now, most likely from whatever was going on last week that caused the increased pain and elevated liver enzymes we dealt with then. The thought is she translocated at that time. We aren't sure what specific bugs we are dealing with, but know it is both gram positive and gram negative bugs.

Today she has a line study scheduled and not a lot else unless they come up with something at rounds. Her platelets remain low so we are looking for a clot somewhere on the end of her line. She did get a unit of blood yesterday too so I think that's helped to perk her up quite a bit.

If you ever have the opportunity please consider donating blood. So many of our kids rely on blood to survive and LIVE their lives fully. Blood products are used for so many things. Maya gets IVIG 1-2x/month which is a pooled blood product to help her immune system and also receives PRBC's (blood cells) on a regular basis. This is just one child. There are so many more who require even more and such a need for donation.

Holly

Thursday, September 4, 2008 10:32 AM CDT

This is Holly filling in for the Mayafly! Last night Maya was transported by air from LaCrosse to Milwaukee with a high fever and low platelets. She is on the 4th floor with "her" nurses so that makes her happy. It still isn't real clear what is going on. She has some low blood pressures and her labs are off. She's also pretty puffy today. Overall she's in good spirits though and busy tearing up an entire roll of tape making some sort of tape ball. Sniggledoodle is here today and saw her this morning so she was happy about that too. So far we have negative blood cultures. I haven't seen this mornings labs yet so maybe that will give us some more direction. Her bili is up a bit, but her other liver numbers have come back down from last week. As usual she's going to keep us guessing.

I'll put her contact info at the bottom. You can send e-cards through the CHW website if you click on gift shop then "send a card". She'd love hearing from you.

Holly

Sunday, August 31, 2008 12:38 AM CDT

Monday Update: Today I went and saw the Onalaska Firefighters again. Some of them even know my new teacher Mr Kline! We had fun-in the shade today. I saw the ladder go down on the truck, it was very neat. Then we went to LaCrosse. It was fun and I showed them my pictures of the trucks from the other Firefighters. I got to see the firefighters collecting dollars and money in their BIG boots on the street and helping kids like me. They let me sit in the truck and try on the air pack.

Today I saw the firemen. They are helping to collect money for kids like me. They are putting it in their purse boots. I thank them for collecting the money so kids can get the things they need. I also got to see their trucks and one of them was very, very big. It was very neat. When I grow up I'm going to be a butterfly firefighter. I will fly in front of a purple fire truck and help be the siren. I make a good siren sound. I will fly the hose to the top of the fire and help them save people. My mom will drive a blue fire truck and she will be there so I don't get too hot. She keeps me cool and does my meds so I'll need her there.

Here are my pictures from today.

Maya

(mom's note: The Onalaska fire department is participating in the Fill the Boot fundraiser for MDA this weekend. They are at Festival Foods in Onalaska and will be there tomorrow morning form 8-11 also. Mitochondrial disease falls under the umbrella of the MDA and we are helping to support them in their efforts. They were wonderful to Maya today and she had a blast. Unfortunately it's very warm out and she overheated after a short while, but some ice and air conditioning partnered with a nap and she's doing better. Again, it's those ups and downs that keep you hopping, but she's worth every minute of it!--we updated yesterday too if you didn't get a chance to see)

Saturday, August 30, 2008 4:40 PM CDT

Today I got a new outfit for school. Guess what color it is???

Yep, PURPLE!

I also went outside for couple of minutes this today because I KNOW I saw a fairy outside and I needed to go see. She was flying on the wings of a butterfly. I couldn't find her, but it was fun anyway. All of that fun this morning made me feel kind of yucky so I took a nap and now I'm going to watch a movie. I feel OK, but don't have much energy because my owies. I am having fun too and playing games with people sometimes. I like to play games. I want to be better on Tuesday so I can go see my friends at school.

Maya

(Mama's note: New pics on photo page. Maya is doing a bit better, but goes from feeling good to really bad each day and then back and forth again so I'm not sure what to think. We are just rolling with it and enjoying the good.)

Thursday, August 28, 2008 9:33 PM CDT

We did make it to school pictures and open house the other afternoon and Maya is very excited about seeing all her friends and teachers again. We were able to spend some time with many of the people she works with at school figuring out schedules and how the year is going to work for her. Nothing is ever set in stone with my girl, but that's OK too, but I know it makes it hard on those trying to plan things. She was very tired after going, but has some other things going on right now so it's hard to say why she's really been so tired. We are trying to roll with things and see how they all play out. Her labs show there is something going on, but don't really give us an answer as to what.

Next week is very full for us with a trip to Milwaukee, a couple of local appointments, PT, and Monday's MDA "Fill the Boot" fundraiser.

Holly

Tuesday, August 26, 2008 10:17 AM CDT

Maya's still not feeling real great. We went to see the doctor yesterday and her labs were off, but not sure if there is anything we can really do right now to make things better. Her ultrasound from last week showed some more kidney stones forming so we need to get on top of that issue although with her blood calcium levels being low it's difficult to know the best way to do that. We return to Children's next week again and the week after that. Looks like we'll be making the trip for the next few weeks, but hopefully coming home each time. Right now she's dealing with a lot of nausea and retching so I hope she's not heading for a Club Med trip.

Today is school picture day and we have a meeting trying to get things set up for her to start school next week. Hopefully that will go well and she'll tolerate being up that long. Yesterday she was in bed by 2pm so we'll see how today goes.

Hopefully she'll be back to update you tomorrow!

Holly

Sunday, August 24, 2008 12:41 AM CDT

Maya is really not feeling well today. She doesn't have a fever, but is throwing up and having a lot of pain. Not sure what is going on, but we'll head into the doctor in the morning. We were able to go to Sesame Street Live yesterday and she had a great time. She wasn't feeling 100 percent but felt pretty good and enjoyed the show. Hopefully she'll be back to update soon. She did update after our trip to Milwaukee in case you hadn't seen it.

Holly

Friday, August 22, 2008 8:19 PM CDT

I'm so happy we are home. It is a very, very long ride and my mom is a very crazy driver.

I got my pictures taken and that was fun because I got to play in the sand and water. We had a little accident though (by "accident" she means she was a bit oppositional and decided it would be fun not to cooperate when it was time to leave).

I went to the hospital and got to see all my doctors and even Sniggledoodle and Dr Chip. He didn't know his name yet. I gave out my cards to all my doctor's and found out I need to have a little surgery on Bertha (her vesicostomy).

We played Wii with Megan and Mary and my Mom. I was really good and all our names started with M.

Today I had to go back to the hopistal and see the eye doctor and another doctor who I like to talk to, but I sang to her instead. I drove my chair down the skywalk very fast and instead of "excuse me" I just said "get out of my way". My mom said it wasn't nice of me, but I though it was very funny. I like to laugh a lot. I can sing very loud and so can Hello Kitty and Reindeer.

Tomorrow I am going to see Sesame Street Live! I'll tell you about it later.

Maya

**We got Maya's pictures done through the littleheroesproject.org . It is an awesome project and so exciting for us to participate in. I'll write more later when I post pictures. We had a wonderful photographer and I hope to be able to share with everyone the outcome of the evening later this week. Thanks Britt, it was a day we'll never forget!

Monday, August 18, 2008 1:42 PM CDT

I had to go see my doctor again today. I got 3 stickers, but I wanted more. They has Thomas the Tank on them. I also got a stick like I do every week and made a basket with my ear thing. I have an owie on Rapunzel and she is hurting me so we had to take blood and cultures. I do not want to go to the hopitstal and right now we are at home so it is good. We are going to Milwaukee later this week to see some other doctors too. It is a L-O-N-G drive. I will have Hello Kitty to talk to and my phone so it will be ok. I might see Sniggledoodle and Crazy Mary when I am there.

Maya

Sunday, August 17, 2008 12:26 AM CDT

I'm Back! I went to church today and we sang. It seemed like we were doing an awful lot of prayin too. I prayed, but it seemed like a lot of it. I got to go to Grace Place because Mandy came with us to take me. She helps my mom take care of me sometimes with my cathing and can help me. We watched a movie about Jesus and then made sand crosses. We got to color too. I took my Bible. Sometimes I forget my Bible, but today I took it.

I have lots of bad days, but today I hope I have a good one. Well, it was already a bad one for a little bit.

Maya

Friday, August 15, 2008 8:25 PM CDT

I thought I'd hop on and update for Maya again. She's still not really feeling well and we are dealing with some other issues that hopefully will be worked out when we return to Milwaukee next week. She does have good times each day and has played here at home each day. She's been very into dress-up this week and playing with her stuffed animals. Fun to see her growing and changing. Today she took a "drive" in her chair around the neighborhood and had a nice time with the mild weather. Hoping she'll be back to updating soon.

Holly

Tuesday, August 12, 2008 3:54 PM CDT

Maya doesn't want to write. She isn't feeling well. She's had some kidney stones and we are hoping that is all that is going on. I won't go into details, but we started antibiotics and we'll do labs again Thursday among other things. Sooner if she continues bleeding. She does have her playful moments and we've been able to control her pain so with some extra fluids the hope is we can get through this at home.

Thanks for checking in!

Holly

Friday, August 8, 2008 8:31 PM CDT

Today I got to play games. Bert and Bob were hurting a lot today (mom's note: these are her G and J tubes). Mandy came over to play with me and we had fun. We watched Enchanted. Tomorrow I'm going to go see Jacob for a little bit. Today was his birthday. Sunday I get to go to Grace Place again with Mandy when my mom goes to church.

I love Pookie. He watched Mama and me play Wii in the afternoon. I like to play bowling and golf. I like to beat my mom! Pookie is my best kitty.

Maya

Note from mom: For those who asked, Kipper is no longer here. She's with a wonderful friend and we are able to see her when we want to. It was the right thing for everyone, including Kipper.

Thursday, August 7, 2008 10:20 AM CDT

I am having fun this summer. It is hot so I have to stay inside, but it is still fun. We went to the beach in the bathtub! My mom painted a sun on the wall for me and I played at the beach with my toys. She made it warm and played music for me. It was fun.

Maya

Monday, August 4, 2008 8:26 PM CDT

Ahoy! That is my fancy way of saying "hi". It is how you say "hi" on a beach!

Today I played my refluter. It makes music. My mom can play songs on it, but I can make it whistle. It was fun. I also painted a very little treasure chest and glued together a fairy. Then I played my refluter some more. My mom kept finding me things to do so I'd quit playing the refluter, that make me laugh. I did examine--a fancy word for "look at"-- some little animals today too. It was like a tedective does.

Adios and Aloha!

Maya

Note from mom: A "refluter" is a recorder or a flute....or both in her case!

Saturday, August 2, 2008 8:04 PM CDT

Today was a good day. I went to Donna's for swimming. I have to be careful of my lines, but Donna and my mom help me. I love playing with Aubrey and in the water.

Me in the Pool

I love pouring water...

Even on my own head!

Playing with Aubrey

Thursday, July 31, 2008 7:55 PM CDT

Today was a good day. I went to the doctor this morning and then to see Robin and Julie. I also got to see Ann. They are all hospital people who help me. Robin always helps me get in the van and today only my Mama got wet! I thought it was funny she had to go in the rain and I stayed dry. I told her she wouldn't melt! She didn't laugh.

I like to listen to books on tape now and today we got a Magic Tree House book on CD. Mostly I do the tapes though at bedtime. I play lots of games and my Wii. I can bowl very, very good and got 132 yesterday. My mom said that was good.

I was pretending to be a monkey today and picking things up with my toes. I am very sneaky! that is when my mom took my picture on the top of my page. I was very funny and crazy. I am a dancy, crazy, funny monkey!

Wednesday, July 30, 2008 4:16 PM CDT

Today I went to the library. I had to go to the doctor too. I didn't want to go to the doctor because it is Wednesday and I go on Thursday, but my arm has sores so I had to go. The library was fun. I got new movies, books and tapes. I likes the books and tapes when I go to bed. My Spinoza Bear reads to be a night when I get to go to sleep. I picked out good stories. Did I tell you my tubies names? I have Bob, Bert, Bertha, and of course Rapunzel! She is my line, because she has two long braids! I think it is very funny and I always like to laugh at everything.

Maya

Sunday, July 27, 2008 10:28 AM CDT

Yesterday I went to my nurse Donna's house. We had fun. I went to the Chimp movie and made a microphone. I got to play with my brother and sister. Well, I call them my brother and sister, but they are Nathan and Aubrey. It was very much fun. I love to go there and have fun. I was kind of sick when I came home, but it was a big day and I am going to rest today. Big days are fun!

My cat is very sweet to me. He is cuddly. Cuddly is a French word for very soft. I wish I was Fancy Nancy.

(Mama's interpretation for those non-Fancy Nancy readers: Fancy Nancy is a book series we read this summer. She is a little girl who likes to be fancy and use big words. She likes to use French words that are fancier. Well, Maya just likes to use bigger words and call them French words. It's pretty entertaining around here most of the time.)

Wednesday, July 23, 2008 10:51 AM CDT

I went to the Mall of America. My mom and I made this to show you. I love the Backyardagain's and Dora so it was a lot of fun to go on rides with them. There were Spongebob rides too and the movie shows me riding his upside-down rollercoaster! It was AMAZING! I also made Little Maya at Friends2Bmade.

Today is not too good for me. I have to be good on Saturday though because we are going to have fun AGAIN--can you believe it?

View this montage created at One True Media
Mall of America 708

Sunday, July 20, 2008 8:01 PM CDT

I love my cat Pookie. Sometimes we call him Pukey and Pookie-Shmooky. He sleeps with me sometimes and I talk to him. We took pictures and a movie to show you.

Maya

Telling Pookie jokes......

Saturday, July 19, 2008 3:55 PM CDT

Today I have two new sores on my belly. They make me cry. I have one on my foot too. It is OK though. My mom and I had lots of fun today. It was a special day for us. We went to some garage sales and got a lot, lot, lot of new books. Then we found the last two Heron birds that were lost. I'm glad they are free now and not locked up in the fence anymore. Birds should be free. We went to the movie after that and to a very cool butterfly house. A butterfly even landed on my hand! I was tired then so I fell asleep. It was a GOOD, GOOD day.

"Bow, dot, rainbow feather bird" and "Stripey baseball, basket bird"
otherwise known as "Heron Main" and "Hank Heron" (what can I say, my girl is an original)

Friday, July 18, 2008 12:01 AM CDT

Hi everybody! I like it when my mom reads to me. We have books where I read one page and she reads the other. They are very fun. I like it when my mom reads me Amber Brown. We get the books from the library. I had to see the doctor yesterday. We had to see a different doctor since my doctor is gone away on a trip. I have a sore throat and my ear hurts, so does my belly. I am ok though and still like to play games. My nurse likes to play the Carebear game with me.

Maya

Monday, July 14, 2008 11:49 AM CDT

Hi everybody. Today we are doing four things like playing a game the 1-100 game and then we are going to take a break. Then I'll play dress-up then we are going to do ballet then we are going to do some reading then finish my butterfly box. It is all beautiful on it. Pookie was laying on the board and cards for the 100 game. Then I won the game and Mama took the board out from underneath Pookie and he runned away! It was very funny.

Maya

Mama update: Maya's been feeling ok. She seems to have a bit of a stomach bug, but is awake and playing so we are just giving some extra fluids. The sore on her belly is starting to heal and the cultures are back so we know we are treating it with the right medicine. A few people have asked about Maya's writing. We use a computer program that assists her in writing called Co-writer. If she's tired she just tells me what to type.

Saturday, July 12, 2008 9:17 PM CDT

I got a sucker. It is yummy! I mostly like to look at it. It is like a beautiful rainbow.

Thursday, July 10, 2008 4:33 PM CDT

Hi Everybody! I went to the doctor today. I got to share my picture of the birds with my nurses and other friends. My mom had a meeting first and I got to play with my stuff while she learned stuff. I don't feel good because I have a sore on my tummy. It is big and red. I have watched Johnny and the Sprites THREE times already this afternoon because I like to fall when I stand up so I am on the couch with my stuff.

I'm glad you liked my Heron pictures. I think they are very neat. We are deciding on a project to do next. I do read everyday. Last night we read about "Amber Brown" and I really liked it. Mostly my mom reads because seeing is hard for me now.

Yesterday my Mama and I played Saturn ball. We blew bubbles too!

Maya

Sunday, July 6, 2008 10:27 PM CDT

Make an on-line slide show at www.OneTrueMedia.com

I love my birds. I gave them all special names. Some of them are, Black Hair Bird, Ocean Bird, Rainbow Bird, World-Ticket-Money Bird, Town Bird, Jewel Bird. Can you guess which ones they are?

Maya

Saturday, July 5, 2008 10:20 AM CDT

I like to hear your messages to me. I had fun with my cousin Autumn. We went to Ohio and drive our van in FOUR states. Wisconsin, Illinois, Indiana, and Ohio. I counted all of them. My cousin Autumn and me made a carnival with rides and games and we gave speeches. I had SO MUCH fun. My cousin is my friend too. I miss her.

My speech

I stacked checkers

Autumn gave me a wagon ride

Mama let me swing with her

This was fun, but bouncy

Wednesday, July 2, 2008 8:18 PM CDT

Mama:
Sorry for the delay. It's been kind of crazy here trying to unpack and get settled back in. Maya is still on IV antibiotics and has some time left on those so busy is an understatement around here. I'm anxious to see what her labs look like tomorrow as her ANC was low last week and this was with her neupogen. She's not sleeping well either due to pain issue and some retching the other night, but finally last night seemed to rest better. I'm not sure I've slept more than 3 continuous hours since Saturday night. Don't get me wrong, I do get more than 3 hours of sleep, it is just interrupted. AT least we are home though and thats the important thing. Maya does such a good job judging for herself what she can/can't do when at home and left to herself, but she is a kid so when there are other kids and "better" things to push herself for then she does just that.

Tonight Maya had to make a "circle" as she calls it. She played with one when we visited with some friends this weekend and it's a wooden sewing hoop and ribbons tied around the outside of it. She loves to run it over her face and swing it through the air. She's very excited and LOVES her hoop.

Maya:
I have a circle. I like how it feels on my face. It is like the ropes at the zoo I drove my chair through very, very fast.

Monday, June 30, 2008 8:13 PM CDT

We are home after our many adventures! I'll try to get some pictures posted and Maya to tell you about what's been going on. The rest of our week is filled with appointments and getting some issues sorted through with home care. Seems like we are either home trying to sort things out and get organized or in Milwaukee! Oh well, I guess there is nothing wrong with that.

Maya will have to introduce you all to her new pal, not furry, but rather a plastic, blow up, and very purple unicorn! Oh, it's semi-big too and was the only thing I could see in the rear-view mirror as I drove 8.5 hours home today!

Medically? Pain is quite the issue right now, not sure what the deal is. Also lots of output so she is getting extra fluids on top of her regular TPN, lipids, etc. She looks good though so we much be doing some thing right.

holly

Saturday, June 28, 2008 7:48 AM CDT

Just wanted to make a quick note. We are doing well. Maya had several appointments in Milwaukee all of which went well. We then came to Ohio for the weekend to visit with my brother and his family.

Maya is very excited about her new adventure. She did tell me it was, "a very long ride" and she was right. I haven't done summer Chicago traffic in awhile and add in construction and lets just say it was lot of fun to be had!

Maya is doing well. Some trouble last night with dropping her heart rate into the 40's and also with increased pain, but she seemed to work through things ok and is looking forward to spending her day with her cousin.

Will add pictures and more when we get home, I'm sure Maya will have a lot to say.

Holly

Monday, June 23, 2008 5:30 PM CDT

Mama Update: Maya is doing a lot better. She's back to sleeping most of the day and this seems to make her few waking hours really good ones. She went to bed on Saturday night after having fun at her nurses house and only woke up for a couple hours yesterday afternoon and then slept again until 2pm this afternoon. We are gearing up to leave for Milwaukee again, but will hopefully get the chance to update from there. We are hoping to find a way to fine tune things so she has more energy, but without stressing her body too much.

Maya Update: My Mama ran into my room to wake me up yesterday to show me a RAINBOW! There were TWO rainbows yesterday. They were very bright and I like rainbows. Kipper is my dog, she doesn't like to listen to me, but she can do lots of things. I like to laugh at her, but that makes her run around. Pookie doesn't think Kipper is very funny. I am reading books right now. One is about faries and one is about Earth. My favorite book is still my Bridges book. I don't want to go to Milwaukee in the van. It takes too long.

Saturday, June 21, 2008 6:26 AM CDT

Thought I'd update quick and hopefully today I can get Maya to update.

Thinks are ok. We are adjusting to being home and although I have a mound of laundry and still need to unpack some we are settled in and moving forward. Today I have a nurse so I'll be able to get some of the above finished and hopefully get out and run errands too. We have 3 more weeks of antibiotics to finish up. She's on two of them now so we'll see how busy that makes things. It's always hard to fit something else in.

Right now she's very into fairies. She got the Disney "fairies" game and we played it yesterday. She learned that the first laugh of a baby is what forms a new fairy wether it be a neverfairy or one on the mainland. This intrigues her as she's not a big fan of babies, but it may have helped babies get bumped up a notch in her book!

Holly

Thursday, June 19, 2008 9:47 PM CDT

HOME!!!!

Yes, I-94 was closed so it took nearly an extra 2 hours to get home. Great fun!

Holly

Tuesday, June 17, 2008 7:12 PM CDT

Today I had 3 headaches. Sniggledoodle came in and snorted like a pig at me and called me Miss Hookie Pookie. I only let him call me that, no one else. I hope to go home soon. I don't know why they keep making me stay here. I got to watch a movie in my MRI, I watched Nemo, but then I got medicine to pause me so I didn't get to finish it.

(Mama update: We are still having out. They did ID the bugs, but we are waiting for susceptability to come back on the final organism so we can narrow her coverage if at all possible. As she said, she had an MRI and EEG today. Her movie was "paused" since she was given sedation. She didn't realize it was her brain on pause and not the movie. We are still having some attitude, but it comes and goes. The neuro symptoms are the ones she's been dealing with over the past month and seem to be related to fatigue, but we aren't sure. Hopefully we'll have some answers tomorrow from todays testing. We are also hoping to let her take a med holiday from her neupogen if her antibody levels have gone down to her neutrophils.)

Thanks for the guestbook entries and notes. Thanks so, so, so much to our wonderful pet sitters. I hear both Pookie and Kipper are doing well.

Holly

Sunday, June 15, 2008 7:59 AM CDT

Hi everybody! I am feeling pretty good. Sometimes I have owies, but not right now. Last night I had a bad belly owie before I went goodnight. We came here in an airplane, but we have to drive home, it takes a LONG time to get there. Kipper and Pookie miss me and I miss them. I want to see them. I was not Super Tube Girl yesterday. I played Disney Guess Who and Princess Memory with my mom. I have a picture of my nurse's baby. I like to talk to her when I feel bad. Bye.

(note from mom: Maya's doing pretty good. Hoping once we ID this bug and know we are on the right medication we can get a car and get out of here. With the flooding it will be a LONG drive as there are already two detours I know of on the way there. I'm guessing early this week. Thanks for the notes in the guestbook and the prayers and support)

Holly and Maya

Friday, June 13, 2008 3:32 PM CDT

I am here at the hopistal. I had to come and see Sniggledoodle because he is the boss and I am sick. I don't feel very sick, but a little and I have pain in my head. I told him I need to go home on Monday because my nurse Donna is going to be there on Monday and Tuesday and we are going to take a walk. Kipper went to my friend Julie's house and Pookie is with Tess. I think they are sad to not be with me.

Thursday, June 12, 2008 10:39 PM CDT

Maya's not feeling well today. We did go to the clinic for labs and then this afternoon her temp was "ten-twenty" as she reads the thermometer (102.0). Temp came down with some help from some tordol so I'm guessing we'll be fine. Labs looked pretty good. Tomorrow she has IVIG then we have a low key weekend planned. Hopefully she'll get on tomorrow and update with me.

Holly

Tuesday, June 10, 2008 10:27 PM CDT

Hi everybody. School is over, but I still have lots of work to do. Today we did magic rocks. I got to read too. I read my mom a book on lizards! She hates lizards. That makes me laugh. I still don't feel too good, but I did get to see some of my birds on the way back from the clinic yesterday. I am making a movie to show you when we find all of them. There are THIRTY-FIVE of them.

I called this bird "chocolate".

This bird had a garden on it. I LOVE gardens and birds and flowers.

Maya

Monday, June 9, 2008 7:15 AM CDT

Maya's still not feeling well, but we wanted to say "thanks" to Stitches of Love and Kindness for her new quilt. She loves it and wanted to show you her favorite squares and her quilt.

She actually wanted me to take pictures of each square to put on here because she loves them all, but I'll spare you the download time.

Thanks again!

Hopefully I can get her on here to update this afternoon.

Holly

Saturday, June 7, 2008 9:30 PM CDT

I'm going to jump in here and update. Maya is really not feeling well. She is either asleep or feeling very poorly. She cried in her sleep and was up several times needing fresh hot packs and extra pain medications. She ended up sleeping finally and minus interruptions slept about 18 hours last night. She was back in bed by 7 tonight and still not feeling well. She's having headaches along with her belly pain, but no fevers so we'll have to see how this plays itself out.

I have to share this recent "funny". This evening we were watching the news and at the end of it they said something like, "thank you and goodnight!". Well, Maya turned to me and said, "how does that man always know it's my bedtime?"

We are laying low this weekend, lots of reading and resting. The weather is touchy even. Thunderstorm after thunderstorm rolling in.

Holly

Thursday, June 5, 2008 9:04 PM CDT

Today my belly hurt. I did get to go see some birds on my way to see Dr B and they were neat. My Mama and I are making a book about the birds. There are 35, but we only found 9 so far. One of the birds was locked up and it was sad because birds should be free (clarification: these are statues of birds and the one at the ball park was in the locked area of fence). Here are my 2 favorite birds I found today. I called them "flower garden bird" and "rainbow bird"

Maya

Monday, June 2, 2008 9:45 PM CDT

Hi everybody! Today I went to school. I got to see my class and read a book. My friends all dressed as fairies for me. I was very happy.

Tonight Mama and I played Wii. I like to play bowling and carnival. I have a movie of me playing bowling. I got a spare. That means all the pins on time 2 when you throw the ball.

Sunday, June 1, 2008 9:00 PM CDT

Today I was playing and only had a couple of owies. I had a tea party with Sparkly Diamond and her Mama Cuddly Diamond. Sparkly Diamond kept drinking her tea even though I told her that was just the name of the party. I sang a song and it was fun. We did go to church today too, I like church.

Maya

(Sorry this is so dark-"the Mama")

Friday, May 30, 2008 8:04 AM CDT

I had to go to the hopistal yesterday. I saw Sniggledoodle and Crazy Mary. I like them. I got my tubie out and it was suppose to make me not have pain...I have pain. I don't like pain. I like to dance and sing. I like my Pookie, he loves me and snuggles me.

Maya

Tuesday, May 27, 2008 11:51 AM CDT

I've decided to give this page over to Maya. She's going to dictate and pick out what pictures, etc she wants on and what she wants to tell you. I'll update for her when she's unable, but I thought it would be a good summer project for her. It will focus more on her and less on the medical stuff that goes along with her because that's who she is. She doesn't focus on her illness, just on LIVING! She has much more to say than I ever will. Enjoy.....

Today I am decorating a box. I like boxes. Memorial Day was yesterday. It is about when people keep us free in America. It is very hard to do because you leave your family by themselves. Thank you for my being free. America keeps me free. Here is me singing and signing Star-Spangled Banner.

Sunday, May 25, 2008 7:59 PM CDT

HAPPY MEMORIAL DAY!!!

Friday, May 23, 2008 8:07 PM CDT

I hope everyone has a good Memorial Day weekend. We have a few plans here and there, but nothing specific to Memorial Day. I'm hoping to find something to do on Monday to honor those who've given up their lives for our freedom. I'd like Maya to begin to understand how blessed she is to be free and she has always loved each holiday that celebrates our country.

I'm going to try to add a video of her tomorrow that celebrates the day too.

Holly

Tuesday, May 20, 2008 11:27 AM CDT

The Fairy Garden is moved. It turned out cute, but we still have more work to do.

Maya really enjoys working on this project so I'm guessing it will continue to evolve as the summer goes on.

Kipper is doing well too. Maya is working with her daily as am I.

Medically things are about the same. Pain is still the biggest issue most days. Seems that with the change in weather fluids are also becoming a problem so I've run those the past several days too.

Holly

Sunday, May 18, 2008 11:06 AM CDT

Maya and I both had nice days yesterday. We spent them doing our own things. She spent the day with her nurse and I spent the day with myself! It was nice.

Maya got to fly a kite which is something she's been wanting to do for the longest time. She had a blast playing and was exhausted when we got home (ok more like when we backed out of the driveway, but that's a small detail). She had lots of fun and is still talking about her kite.

I can't believe it was up in the sky. Good thing she did this activity with someone other than me because I'm the kite flying failure. I could never get a kite in the air, much less get it to stay there!

She also got to play velcro ball and the smile says it all....

I have played ball with her before and she has quite an arm on her.

Kipper is doing fine. they are still enjoying each other and the benefits of having her as a pal are already showing.

This was her trying to get Kipper into the bed...finally Kipper just picked up the bed and left. It was pretty funny! Maya kept saying "bed" lounder and louder then Kipper took the bed, moved it and climbed in, cured up and fell asleep. Ahhhh...the joys of being a dog!

Anyhow, things are ok medically. Little things going on, but nothing we can't handle.

Holly

Thursday, May 15, 2008 9:23 PM CDT

Maya had a good appointment this morning. Things are heading in the right direction although she's having trouble walking some and getting short of breath. It is always hard to find a balance between helping her know how much energy to expend and how much to conserve.

She is loving Kipper. I have a few new picture to share. They took a nice walk this afternoon and spent lots of time talking. Actually Maya does most of the talking and Kipper does most of the listening!

Taking Kipper for a walk....

Kipper bringing her vest to Maya....

Playing with Kipper....

Wednesday, May 14, 2008 7:59 PM CDT

We had a nice visit with Nana and Papa. Maya enjoyed meeting Kipper and Pookie would have liked to see him leave with Nana and Papa this afternoon! They actually get along fine, Pookie would just rather have stayed a nice family of 3 instead of expanding to 4! OH well, he'll get over it (which is what Maya tells me to do quite often, "just get over it Mama!"

Healthwise Maya is doing ok. Finished antibiotics on Monday night and is not running a fever anymore so all is well. She sees the pediatrician tomorrow and then is going to try and do school on Friday. There are new pics on the photo page also.

Holly

Monday, May 12, 2008 11:22 PM CDT

Kipper is Here!!! Maya was excited to meet her new pal and Kipper was excited to meet Maya. It will take some adjusting, but seems to be a good match.

Maya is feeling better each day. Today was a big turn around for her and she seems much more herself, although very tired and still only laying on the couch, but at least we saw some smiles today. I'm hoping soon she'll be back to herself. I don't know how much of this is post op stuff and how much is just the effect this illness had on her.

I'll update in a couple days with pictures and more about this transition. Thanks for all the Mother's Day wishes. I hope all of you mom's out there took some time for yourself and to be loved by your children.

Holly

Friday, May 9, 2008 10:15 PM CDT

HOME!!!!!!!!

We are here. Pookie's here. Lots to do, but happy to be home.

Will update soon when I get this mess under control.

Holly

Thursday, May 8, 2008 12:01 AM CDT

We are not going home. Many reasons, nothing too big, but not the right timing. We'll try again tomorrow and see where we get then. I have everything packed and the car reserved again for tomorrow so we'll see how it goes.

She keeps me hopping, that's for sure.

Holly

Thursday, May 8, 2008 12:01 AM CDT

Wednesday, May 7, 2008 11:31 AM CDT

Wow, I thought I'd updated since Saturday. Sorry about that.

Maya continues to improve slowly. She is using a little less of her PCA and is more interested in being awake and playing during the day. She's been doing crafts, painting, and preparing for a couple of special birthday's this week.

I think the plan is to go home tomorrow and finish antibiotics there on the 12th. She's still on 3 IV antibiotics and all her regular meds which makes for a busy person caring for her, but they've been wonderful. We love our nurses and want to say Happy Nurses Week to all our nurses her and in LaCrosse. We couldn't do this without you on our team!

This weekend Nana and Papa are going to come and bring us Kipper. It will be nice to see them again and also to finally meet Kipper and let him join our family. He seems very sweet.

Not too much else new. We'll head back down in a few weeks. Still working on a way home, I need to call about a car. We have equipment to bring home too so I need something different than usual. If anyone is free tomorrow and looking for a nice LONG drive let me know. We'll figure it out, we always do.

Holly

Saturday, May 3, 2008 3:56 PM CDT

Maya is a bit better today. She woke up this morning and played for a couple of hours before getting her hair washed and a bath/bed change. We wore her out though because she's been asleep ever since. Sleep is good though, it's what her body needs to heal.

We've been so blessed by so many of you, I just want to continue to say Thank you for everything. I have to say, God makes sure our needs are always met and when we need a "pick me up" he sends that our way too.

We are holding the course right now, hoping for things to cruise through so we can head home mid week. IVIG is running now and we've still got 8 days of antibiotics left. All good.

I know you like Maya stories so I have to share that she's been taking virtual field trips. When her pain is bad or she doesn't want to deal with something going on she just starts talking about where she is, what she's doing, and where she's going. Most frequently it's too her nurse Nicole's house to see her baby. Hello Kitty's also popped in a few times in the past couple days, she's not on her best behavior so Maya and her have argued quite a bit. I guess this means our lives are slowly returning to 'normal'.

Holly
Holly

Friday, May 2, 2008 9:07 AM CDT

I'm going to keep this brief since I'm not sure what to say. Maya isn't going home until at least next Wednesday. She's really not any different then the other day, but there are signs of inflammation and fevers we need to get to the bottom of. No symptoms of more infection, but her body still isn't happy at this point. We live to far to turn around and come back if being discharged didn't work out. To discharge without a clear picture and plan isn't in her best interest and my goal is to have a nice long time home after this so we'll stay put and be patient in hopes to get out next week and be able to stay home though the summer.

Jeanine, thank you so much. Maya is sending me on a mission today. We'll see what we discover.

If anyone would like to send her an ecard, the link is under gift shop on the chw.org website. She's got them hanging on the wall and they are "sorted" per her direction.

HOlly

Wednesday, April 30, 2008 11:16 PM CDT

Baby steps? Maybe? or maybe Two steps forward and another one back?

We aren't sure what's going on. She continues to run temps and have pain, but on the other hand her bleeding has slowed WAY down and she was awake for over an hour at one point today (sorting the whole time). We'll see what tomorrow brings and go from there. Still hoping to return home soon and see how she does there. We added another antibiotic today and maybe that will do the trick. We've scanned and cultured about everything at his point so we'll see if something turns up. There are a few other side issues to attend to also, but we'll take baby steps if that's what it takes.

Holly

Tuesday, April 29, 2008 8:51 PM CDT

Things are still not going too smooth here. Maya spiked a couple of temps today and although the bleeding has slowed way down she is having more bladder spasms and more headaches. I'm not sure what my take is on all of it. Ready to go home, but wanting her to be really ready to go so we can stay home for awhile.

We didn't hear from Hello Kitty today and basically she is just in the sorting mode. It's her way of coping and blocking out how rotten she feels.

She is always excited to get your ecards. Thanks to those who've sent cards, messages, calls, and who are thinking of us and praying.

Holly

Monday, April 28, 2008 0:01 AM CDT

Today was better and Hello Kitty showed up more than once! I heard her this morning asking Maya how things were and if she'd like a baby and again this afternoon asking Maya about her catheter.

We continue to have a few challenges here, but improvements are seen each day. Today she played for a couple of hours and watched a few Barney episodes. When her pain is under control she's very much herself. I don't think the next three weeks will be super pleasant given we can't remove the catheters in her belly until then, but she'll get through it the best she can and I'm sure do it in true Maya form. Then....she has some serious plans for dancing one those tubes are out. She talks about dancing everyday so we'll have to get on that once they are removed.

To answer the big question everyone has.....there has been NO painting yet. She really can't sit up all the way in bed and actually has no paints at this point. I think we'll have to see what childlife has to offer in the morning now that she seems to be over the hump. Today it was felt art, a felt art music box to be exact. That and some serious princess coloring.

Holly

Saturday, April 26, 2008 2:48 PM CDT

Maya's resting after an eventful morning trying to manage both her pain and her bleeding. We seem to be in a better place with both after making some changes in her meds and also giving her another unit of blood. She of course in the midst of the episode of pain was just being her Maya self....singing songs and being silly (ok ornery might be a better word). She went from singing to crying and then back again as we wrestled with making her comfortable. She tries so hard to keep herself distracted.

Not too much else to report here. We are waiting to see some improvement so we can talk discharge, but right now it's all in a holding pattern until the bleeding slows and her pain is better managed. She got new night splints yesterday and is so happy, she's a funny girl that way. She does not like taking them off and they are ordered 2 hours on and 2 off so we wrestle them off then listen to her beg for her "boots" back for the next couple hours.........and yes, this includes during the night too, it's like she can't sleep since she's busy thinking about that. :)

Will update as things change, thanks for checking in.

Holly

Friday, April 25, 2008 9:29 AM CDT

Things continue to be challenging here. Maya's pain is not controlled yet and although it is improved from yesterday, it's a far cry from her being comfortable. We did increase what she's getting and walk the fine line between her being sedated, but comfortable or awake, but in a lot of discomfort. This morning she does wake and talk to us for times and then the pain gets to the point she escapes into sleep. There are a few other factors adding to these challenges, but all to be expected in a recovery of someone with the complex issues she deals with.

It's Friday so rounds are later and I may know more then what to expect from our day and the weekend. Hopefully we can continue to see steady improvements.

One great sign is Hello Kitty's voice was heard today. I haven't "heard" from her since we were on the runway flying here over a week ago. I didn't realize I'm missed her voice! It was good to hear here little Kitty attitude since I know this means Maya is feeling more herself at least for short moments.

Holly

Thursday, April 24, 2008 9:14 AM CDT

Maya's night was ok. She actually slept for one decent period of time although she woke up in a lot of pain since she hadn't pushed her "button" for an extra dose of pain meds during the few hours she was asleep. We ended up giving her some extra on top of everything else to get her comfortable and she's back to sleep now. RT was here for her breathing treatment and she slept through that too. Her wound looks good, but bigger than I anticipated incision wise. She has two tubes draining from there plus her G and J tube are draining also. She's suppose to have PT and OT today but I'm guessing that will be pretty much a passive activity by the looks of things. They are hoping to get her continued PT/OT at the clinic near home since she can't get it through school. It will be nice to get to look at what we can do to help increase her endurance with in turn will really help her get to do more of what a typical kid does...school, church, play, etc. It is nice to have people around who understand Maya and understand how she and many kids like her work. Things might not make a lot of sense, but we know what works for her and how to help her more because of it.

Not much in terms of plan or goal today other than making sure she's comfortable and well hydrated.

Thanks again to each of you for being a part of our lives in whatever capacity. We know from this site there are so many people out there checking in and who care about her. We appreciate it.

Holly

Holly

Wednesday, April 23, 2008 7:30 PM CDT

We've had a couple of long days and nights. Still playing with her blood pressures and pain then today she went to the OR for over 4 hours to have a vesicostomy placed with a superpubic also. This will allow her (once healed) to be cathed through the vesicostomy. Tonight our goal is just to keep her comfortable, we'll see where we go from there.

Not too much else to say tonight, planning on resting when she is.

Holly

Monday, April 21, 2008 10:01 PM CDT

Home isn't as close as I'd been thinking, but it's ok. She didn't have near the good day today that she had on Sunday, but not so much medically just didn't look like herself and didn't really act like Maya either. We have two bugs we are treating as from what we found out last night and although we have negative cultures at this point it does change our treatment plan a bit.

I don't have my camera this admit, but wish I did. She's so cute sometimes sitting there all "super tube girl" and stuff. Always can bring a smile to my face although today her behavior was a challenge at times too.

She really just wants to paint so I need to make sure this happens tomorrow. I swear she asked everyone from childlife to housekeeping today about getting her some paint. Tomorrow we'll track down the paints and get to work. :)

Thanks for continuing to lift us up and encourage us. We really appreciate it. Maya loved her cards today and has loved hearing the guestbook messages too.

Holly

Sunday, April 20, 2008 9:26 AM CDT

Things are going pretty good here. Maya's talking and playing like her regular self and offering her "advice" to those taking care of her. Her labs are looking good and she got her IVIG yesterday so her immune system should be pumped up and ready to fight. Right now she is in her SuperTubeGirl attire and ready to face the day. As always, we are both well taken care of here and although they are very good to us, we are ready to get home and back to our kitty and (soon to be) dog.

Not a whole lot exciting. We ID'd the bug and I say we as my prediction was correct. She acts different depending on the bug so it is usually pretty easy to predict what she's growing, of course, now that I've said that it won't be easy anymore. The best news is we all know now to just treat through her line and eventually it will clear and we don't have to lose a line site.

No temps yesterday and b/p's are improving. I see the landscape of home in our future!

Holly

Friday, April 18, 2008 6:15 PM CDT

Update! 11:20pm. Maya's back on the 4th floor!

Well, it wasn't just Maya that woke me up during the night. It was an earthquake too! How weird. At the time I was thinking, wow, the building is shaking, they can't be doing construction at this hour. If kind of laughed to myself thinking, it's like there is an earthquake. Well, imagine my surprise when this morning I was talking to one of her nurse friends in LaCrosse and she was updating me on the news (an little joke between us) and said, "there was an earthquake last night".

As far as the Mayafly goes. She's doing ok. She perked up a bit this morning and then got pretty tired and grumpy. I finally got her to take a nap about noon and she's just been drifting in and out since then. Her HR and temp are up again so we'll see. We know it's a bug now, just not what one. I have my bets in, but we'll see what we end up with. We are triple covering right now so we should be ok. B/P's are more stable and her labs looked better after getting some blood.

She was very happy today to get a bright bag delivered today with who else?? Gloria's Mama! She's been wanting Gloria's Mama for awhile now and this penguin fits the bill. She's been snuggled up with her all afternoon. The nurse asked her, "so is Gloria home all alone?" and Maya answered, "Alone? NO...My fuzzy friends are never alone, they are with their Friends!" All this with a duh tone. She never ceases to be Maya...you have to love her sometimes (ok, in my case it's all the time, but whatever). One more funny...Yesterday she had to have an unpleasant procedure done and in the midst of it we had several people in the room helping. Maya was royally ticked off and let us know it. She was really whiney and someone said to her she'd get to see Sniggledoodle (her doctor) tomorrow she answered no I won't, he's gone for THREE days. He goes to London and (very whiny at this point) I want to go to London WITH Sniggledoodle, but I have to stay here with MY MOM (enter dirty look at Mom!).

I'll update tomorrow and hopefully have some new contact info if we move over to the IICU side.

Holly

Thursday, April 17, 2008 6:25 PM CDT

Greetings from Club Med! We were flown to Children's this afternoon. Maya's had enough of feeling bad and running temps and her body showed us so today. Her temps are up to 103 again and she's puffy and not feeling well at all. We were having some issues with her b/p, but that's much better after 2 units of PRBC"S (blood). She's been started on 3 antibiotics although we still don't know if it's an infection we are dealing with or what is going on, but she does look better and we are hoping to be back on IICU tomorrow. Right now she's in ICU and getting some extra fluids.

She has 'Samantha' with her and tucked in at her side and is finally resting pretty well. I'll update tomorrow after rounds when I know more what the plan is. Thanks for checking in on us and for your continued encouragement on our journey.

Holly

Wednesday, April 16, 2008 9:03 AM CDT

I don't have much to say, but wanted to give a quick update. I'm not sure how much I've mentioned it here, but Maya's had a rough couple of weeks with periods of fevers. They seem to have become the mainstay of this week with elevations of up to 103.7. We have negative cultures so we are staying put here at home which is nice, although at times frustrating. There are a few theories behind the fevers with one being a drug interaction, but as some of you may remember about 2.5 years ago we had this issue and it turned out NOT to be a drug issue, but rather a bad infection that didn't rear it's ugly face for awhile. I'm trying to be positive though.

One thing these fevers have done is make it seem we are further isolated. We aren't of course, but she doesn't feel like going out anywhere so we've been home much of the time...sometimes it is several days before I see or hear from another adult. I do have her teachers that come most mornings, but she's not felt well enough for school much of the time either so that time is either cut short or just missed too. Geez I'm a whiner today. Anyhow, on to more exciting things.......

Maya has a "new" furry friend she found in her pile of friends. It is a tiny kitten she'd gotten several years ago when in the hospital. I'm thinking like 5-6. She use to only play with kittens. She loved cats---then we got Pookie. It seemed to settle her strong desire to be surrounded by them. Anyhow, this little kitten she's named 'Samantha'. Funny she chose that name out of the blue as this was the name of my first cat I had as a girl and I've never told her that, or if I did it was in passing a long time ago. I too had a very strong love of cats as a little girl, it must be a girl thing. Anyhow, Samantha is ever present and last night was seen nuzzling Pookie as they all lay in a cuddle pile on the couch. I think Pook was enjoying the extra attention and Maya thought she was being so clever making Samantha do this.

We are eagerly awaiting Saturday when Nana, Papa, and KIPPER come to visit and Kipper will join us as Maya's service dog. I really hope Maya is feeling better by then so we can have a good start and it will be as fun and exciting for her as it should be. Somehow curled on the couch with a blanket over your head is less than exciting and not my idea of a good day.

Thanks for checking in, we are so thankful for all the support you give us each day thought this site.

Holly

Saturday, April 12, 2008 2:50 PM CDT

As promised yesterday here are some pictures of one of her fairy projects. She made a few fairies to attract even more to her garden. She's very unhappy with the fact it snowed last night and there is no sun out to work outside today. I keep telling her spring will be here soon, but so far I'm not sure I even believe myself. She wanted to wear her spring dress today, but I told her it was too cold. We did "practice" wearing it and I snapped a few pictures of it before making her change into something warmer.

Thanks for checking in. Medically things are the same as yesterday so I won't repeat myself. Today is a fever day though. Still not sure what to thing, but she seems to feel like playing this afternoon so we'll see.

Holly

Friday, April 11, 2008 11:14 PM CDT

Not too much going on this week. We are working on some medication changes that were recommended Monday and after checking levels on her meds. It will hopefully help with a few issues she's had and we actually got rid of a medication so it will also make things a little less complicated, any med we can get rid of is a good thing.

Labs were ok yesterday and she had a good appointment. It was nice to see her feeling good and she did well at the appointment. Today was school in the morning and her nurse was here so they played some games and Maya rested while Mommy had her Friday morning "out". Rummage sales were going on although it is still freezing and raining/sleeting here. Not sure what happened to April!

The weather is suppose to continue being yucky this weekend so we are just going to stay home and work on a few crafts she's been wanting to do including a house for her fairy garden. Someday if it ever warms up we'll move it outside and get the flowers going. I'll post some pictures of her projects tomorrow.

Holly

Monday, April 7, 2008 10:49 PM CDT

What a long day! We made the trip to Milwaukee in a round trip in a day so 414 miles later here were are. Maya is exhausted to say the least and her tummy wasn't so happy today either. We did have good appointments and have several changes we are making that are going to be nice (we are actually getting rid of a couple of meds!). We discussed a few things and she'll need to follow up for a couple of tests at some point and based off todays labs we'll adjust some med dosages. Overall it was a good day and Maya enjoyed seeing her nurses, Sniggledoodle, and visiting her friend Kendra who got to go HOME today!

Maya's still having quite a bit of belly pain each day, we are going to go back to rotating antibiotics to see if that better controls her overgrowth.

This weekend was nice. We got out to the park on Saturday and Maya really enjoyed it. She didn't last much longer than 10 minutes, but it was beautiful out and she had a blast. So good to see her playing and laughing. Sunday it rained, but I packed things for today and we watched Nancy Drew.

Thanks for checking in and if you've tried emailing me lately and gotten it back my email is mom2maya@centurytel.net and not @mac.com . Some of my mail was going out with the mac.com address and it is no longer working. If you've sent anything in the past 2 days you might want to resend it.

Holly

Thursday, April 3, 2008 10:59 PM CDT

Doctor's appointment went well today. Maya is puffy and not feeling the best, but ok and we are assuming we are dealing with something viral. Who knows at this point.

Anyhow, Maya's been heavy into the bead sorting again. Most of her awake hours look like this....

Unfortunately for Pookie, a few of his awake hours today looked like this.....

You have to love his patient attitude with his "mama". He is a very loved kitty. Maya had been begging for a baby, so.........well, I got her one! It lasted a bit then they both lost interest.

She also called the ocean today, had quite the conversation on her "shell phone" and told the ocean all that was going on, discussed her belly and head hurting then she told the ocean she had to go. She's so in love with life....it always continues to amaze me.

Monday, March 31, 2008 11:15 PM CDT

We had a quiet weekend. Gloria and Maya watched a movie the toothfairy had brought Saturday night.

It was so funny to hear Maya exclaim when she woke up and stuck her hand under her pillow, "Oh my goodness Gloria, You are NOT going to believe what the tooth fairy brought me!" They watched the movie twice then I looked over and found this....

and this.....

Sunday was also a quiet day, but she played with her box of phones much of the day. At one point she was "talking" to someone and asked them to "put a straw in it". I looked over and she was sipping the phone. I asked what she was doing and she told me, "I'm drinking a box drink through the phone, Aubrey had one and I wanted to share it with her." Apparently the phone has more uses than I was aware of. I'm not even sure she has ever had a box drink and I KNOW she's never shared a drink through the little holes on the phone.

Hello Kitty has been laying low too. I haven't heard much more than a peep from her today. That "peep" was actually a meowing conversation with Pookie. Maya told me they were arguing over a cat toy. I have to say, when Hello Kitty isn't commenting on my every move I kind of miss her opinion. Hmmm......I really need more adult contact.

Anyhow, thanks for checking in on us. Maya is still on the IV antibiotic and the doctor called today and wants to add another antibiotic to make sure we have good coverage and get rid of this UTI before the bugs decide to visit Maya anywhere else. She's still having pain, but no fever since Saturday! WE are moving in the right direction.

Holly

Friday, March 28, 2008 4:08 PM CDT

How quickly things change around here. Maya did NOT have a good day yesterday. Very sleepy, puffy, uncomfortable, and running a temp on and off. We were scheduled to see the doctor anyway and did cultures of blood and urine, labs, etc. Last night we decided we needed to start some IV antibiotics so we started the first dose and then it will be twice a day for a week. Today we found out her urine culture is growing so there is the chance we may start her on something for that too, but most likely we'll just watch her for that one. Today she's some better, but still very tired, quiet, and has some sores in her mouth and on her chest. Right now she's sorting beads. For those of you who know her well you know this means she is coping and trying to deal with how she feels. Sorting is her way of shutting out the world and how she feels. It's something she always does in the hospital and has done since she was little. When not sorting she's napping.

She did get out for a short while this afternoon since we had to run to the pharmacy for some of the other meds and drove her chair a bit. Then she decided to "sleep drive". FYI-this does not work any better in a chair then trying to drive your car while sleeping....I would not try this at home! :)

We don't have plans for the weekend, a few projects to work on here at home and her nurse is here tomorrow morning so I'm going to the first neighborhood rummage sales of the year! Yes, it's March and yes it's only in the 30's, but I can't pass up a good bargain!

Holly

Monday, March 24, 2008 8:54 PM CDT

We had a nice Easter although we didn't make it to church due to my having some stomach bug again. Maya really enjoyed her Easter goodies from the bunny and looking for eggs. She was so cute when she saw her basket, I think she was more excited than she was at Christmas! We seemed to have a lot of bubbles as part of our Easter, here's a video of her playing with her bubbles, she was so funny! Pop! Pop! Pop!

We also did some home church and read the Easter Story, rememorized John 3:16 (well, she's almost there) and made a wooden cross. Maya really enjoyed watching her Beginner Bible Easter movie TOGETHER. you could tell she felt like she was sharing something new with me and it was fun to hear her tell me what was going on.

She's still running temps daily, not sure why, but today was the first time in a few days it really seemed to bother her. She had a really bad headache and not much seemed to touch it. She was also getting IVIG at the time so I'm sure that didn't help. She's been sleeping in until almost 11 and napping and still in bed by 7 or so I'm guessing she's still fighting something, maybe we are just passing it back and forth? Who knows.

Just a peds appointment and school the rest of the week for us and IVIG was tonight. We return to Milwaukee again for several appointments on the 7th.

Holly

Saturday, March 22, 2008 7:32 PM CDT

Happy Easter! Maya and I are looking forward to celebrating Easter and it's miracle. We read the story of palm Sunday last week and on Friday we discussed the meaning of Good Friday and the time Jesus spent in the garden. Today she did the "usual" Easter stuff with eggs and I took her Easter pics, but we also sat and read the Easter story and discussed the excitement of tomorrow morning and knowing Christ is risen! Maya's much more interested this year and although she learned the story last year and many times before heard it she's able to repeat it and tell the story to all her fuzzy friends this year.

She helped me pick out the background and clips for this entry and is sitting here waiting for her turn to "talk" here she goes.....

"I made Easter eggs, I paint them purple, blue, yellow, green, orange, all sorts of colors. I used the rubber bands for stripes! And I went to Toy's R Us and got some rocks (out of the parking lot) so they could go with my other fairy stuff in the fairy garden. Jesus comed from the dead to live with us in our hearts."

Here are some pics from our day and I added some to the photo page too! We are hoping to make it to church tomorrow although Maya continues to spike a temp once or twice a day, but cultures are negative and she acts fine so we'll see how it goes. OH boy! I need to go ref a fight between Maya and Hello Kitty....aparently Hello Kitty is saying the eggs aren't very pretty!

Holly

Monday, March 17, 2008 2:13 PM CDT

Sorry for the lack of updates, I've been a bit under the weather.

Maya had a great Gotcha Day. WE watched movies of her homecoming, of her early days as a part of the family, and her Make A Wish trip from when she was 4. Hard to believe she was so little! She's really grown not only physically, but into such a happy, loving little girl. We also added a page to her Gotcha Book that hold all the important pieces of her journey. Sort of like a baby book for adoptions. She also loved her bracelet and the little butterfly it sported. Here is a picture of us from the big day...

and one of the picture we made together as a part of her book...

After Wednesday she began prep for her next big "event" St Patricks Day! She loves holidays no matter what they are! Today she is dressed in green lips socks, a bright green bow and her green and blue dress. She even put green bows on Gloria so she could celebrate along with her. When I went to the doctor this morning she had to wish everyone a Happy St Patrick's Day and tell them about all the green she had on.

Other than that not a whole lot more going on. We had to postpone out Milwaukee trip until I'm feeling better and up to the drive, but hopefully later this week. She's been working hard on her school work and was thrilled I found a couple books last week she could read. She is just starting to read and loves it. She also dressed up her Build a Bear pals in their spring and Easter clothes.

Thanks for continuing to check in on us. We love to hear from you and Maya's enjoying trying out her new reading skills in the guestbook. She can't make out all the words, but likes to pick out the ones she does know...this doesn't mean you need to start signing in short easy to sound out words :)

Holly

Tuesday, March 11, 2008 4:54 PM CDT

To me Gotcha Day is so much more important than Maya�s birthday. Everyone has stories of the day their child was born�well I wasn�t there when Maya was born, she wasn�t even a blip on my horizion at that point. Quite honestly the day she was born I had a high fever and was in bed with a severe case of mono trying to plan a wedding that was to take place less than 2 weeks later. Now, not many can say that of their child�s birthday-can they? No, her birthday is only special in that it is the day she was born to a mother who loved her enough to give her life and bless me with teaching her to live that life! (AND it�s another good reason to celebrate LIVING!) The day she arrived in my arms was over two years later and I can remember every moment of the days leading up to it and each moment of the day as if it was yesterday. The moment she was placed in my arms though it becomes a blur, my heart was too full for my brain to be able to remember anything. Although, thanks to the marvels of modern technology (and some gracious family members) I have enough video that over these past 7 years I�ve burned the rest of the �after� details into my brain. I wrote her a letter the other day. Below is a section of the letter that expresses best how much my daughter and her joining my life means to me.

I chose you with my heart
You chose me with your soul
I chose you to teach about the world
You taught me it�s more important to dream
I chose you to experience life with
You joined me on life�s greatest journey
I chose you to love with my whole heart
You chose to love me even more
I chose you to share my blessings
You blessed me so much more
I chose you to hold my hand
Instead you hold my heart

Although I chose her and she chose me��God chose us both to share this journey, together, forever and for always. I�m so thankful to him for this wonderful gift.

I hope you enjoy this, for some reason I've never scanned in pictures from my pre digital camera days so these are only from the last 5 years.

Make an on-line slide show at www.OneTrueMedia.com

Sunday, March 9, 2008 7:00 PM CDT

Today was a Pookie/Gloria type of day. Maya actually didn't get up until after 12, but when she did we decided to plot out her fairy garden so when spring finally shows it's face we can move the entire thing outside. As those of you with cats may know. The cat can't stand not being in the middle of it all when he thinks you might be interested in something other than him! He even felt the need to take over Gloria for awhile.

We started on the fairy garden and Maya's excited about what fairy's or butterflies will make their way for a visit this spring. We read we'd need lots of sparkle and color to attract both of these winged creatures. She knows she'll only see the butterflies, but hopes to see signs the fairy's have been by too...she knows how shy they are since her favorite book right now is about a garden fairy who went to Hawaii quite by accident. After we did a little "constructing" she gave Gloria the grand tour...and of course Pookie checked it out too.

In other news.....we've just been hanging out and relaxing for the weekend. Maya stayed in bed most of yesterday as her tummy was hurting a lot and she was just not feeling well. Today was much better for the most part. Tomorrow she'll get labs and Thursday she sees the doctor again. Thanks for the early Gotcha greetings. I'm hoping to finish a slideshow to add for her special day.

Holly

Thursday, March 6, 2008 10:34 AM CST

This morning Gloria was nice enough to let India tag along to the doctor. Gloria had decided it was too cold out! I tried to figure out why a penguin would get so cold, but apparently Gloria has developed a cough and the cold makes it worse. Hmmm, strange how her symptoms mimic Miss Mayafly's. So anyhow India tagged along on the outing in her "baby pack" sporting her new sleeper. (thanks Shauna!) Now that we're home Gloria, Maya, and India are snuggled back up on the couch waiting for Donna, Maya's nurse. She hasn't been here in a week so I have to admit we are all a little excited! I'm going out to lunch wiht a friend and am looking forward to not having to entertain a non-eater through the meal. (she is actually really good at staying busy when we are in a restaurant, I just feel like somehow I need to make up for the fact she's not eating)

Today's labs looked really good except we are getting to the point she's gonna need blood again. Please if you are able, think about donating blood...so many people rely on blood products to live each day. If you are thinking of donating blood check out a wonderful slideshow at Zach and Sam's Page in honor of two awesome boys!

We wanted to wish Mrs Kevin a safe trip to Ireland this week and Maya's excited to hear about his adventures there. For those of you fairly new to the site, Mrs Kevin was Maya's homebound teacher the past couple of years. Here's a picture from his visit this weekend.

Next Wednesday is Maya's Gotcha Day...it's hard to believe it's already been 7 years since we became family. I'm trying to work on a slideshow to share those 7 years with you.

Thanks for checking in!

Holly

Wednesday, February 27, 2008 12:22 AM CST

Not a lot going on here. Maya's not been feeling the best so we've kept kind of quiet and she's been resting a lot. She does quietly do puzzles and spends lots of time with Gloria, her penguin.

Tomorrow she has an appointment with the pediatrician and labs. I'm thinking we'll get a UA to make sure she doesn't have a UTI as she's also running some low grade temps. Nothing too exciting, but enough that we need to make sure something isn't creeping up on us.

Maya's fallen out of bed the past two nights. This is new for her and I'm hoping not a habit. She's in a regular bed, but it's pretty high since she has a KCI air mattress on it. Not sure why all this sudden this is an issue. Nothing has changed and this isn't something she does on a regular basis, not even when she was younger.

Maya funny: Yesterday Gloria and Maya were doing a puzzle of the US. They discussed (rather animated) that they didn't know if it was Tennessee or Tennesshear, Tennessfeel, or Tennesssmell, or Tennesstaste............at least I know she knows her five senses.....well, Gloria does anyway!

Holly

Sunday, February 24, 2008 4:23 PM CST

Have I said lately how much I love my daughter? Of course, I always do, but some days when she is just so herself I just get overcome. I can't imagine a day without her and feel so blessed for each one I get to spend in her. I just hope I'm learning everything I can from her......Love, humor, and a soul that is right with God.

Today we went to a community Open House type of thing. She wanted to take, Gloria, the penguin. When I was putting her lift up and moving her into the van in her chair Gloria rode along in a little backpack strapped to the side. Well, Gloria was kind of in the way so I said, "Duck Gloria!" (Yes, I talk to the stuffed beasts too--they are very much a part of our day) As quick as I said, "duck", Gloria answered me back with "Duck! How dare you call me a duck, I'm a penguin!" It's a much better story in Gloria's voice, but only Maya can do the voices of the beasts.

Right now Maya is journaling. She's writing all sorts of things.........I'll give you the version I hear her say as she's writing since in reality the entire paper looks like this: lllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllll
She pretty much just writes with slashes when she really has something to say.

"Maya's a nice little girl, everyone she knows is lucky to be her friend (no self-esteem issues here!)

"Maya's mom is good at a lot of things, she is a good Mama and a Very, very good eater!" (nice to know the things I do she finds important)

"Maya has a cat named Pookie, he has an attitude!" (she's right on there)

"Maya likes the sun...she doesn't like the wind. (again, very true)

"Maya let her balloon go today, she sent it up to heaven so the angels could play with it" (she insisted this was necessary)

"Maya made a great shopping list yesterday, she will need it next time she goes to the super cool store" (we went to Office Depot, she LOVED it and had to stay for over an hour)

That is about all I heard although she's still writing, but mostly talking with Gloria and Hello Kitty's mom. They are listing things they see and arguing if they should be calling me Mom, Mama, or Holly.

When I said earlier her soul is right, I know this because she prays several times a day and sometimes I have the privilege of hearing her conversations. Most of the time she likes to just share her day, but she's so thankful, "Thanks God for the wind, I don't like it, but I know it is bringing spring". and so genuine, "Jesus, My mom needs a parking spot, she's kind of a crazy driver so it needs to be pretty big."

Like I said, I love this girl of mine.

Holly

Thursday, February 21, 2008 6:34 PM CST

It's been kind of a long week. Maya's not been feeling her best, but not really bad either so we are having lots of ups and downs. She's been sleeping a lot and on Monday her labs weren't really where they needed to be. There are some values that are always in the abnormal range, but in a range of "abnormal" where we expect them. Monday was one of those days they went outside of that range. I think she was a bit dry from a lot of G and J tube output. She had over a liter out on Sunday so among other things this wasn't keeping her feeling as well as she had been. Today was a little better with her labs although we ended up doing a strep test too since she has a sore throat and some yuck on her tonsils. So far that is negative though so it's most likely we are dealing with something viral, very nice since I'm enjoying our time off antibiotics

It's still so cold here so we haven't really gone out much. We did go into the clinic today and on the way home she had to stop and "spend the dollars" that were burning a hole in her pocket. She found a little stuffed penguin she liked and has been holding all afternoon.

Last Saturday's time with her nurse was a hit. She loved going to her house and playing on the Wii. She also decorated cookies and made a "cookie tree". She loves to bake even though she can't eat what she bakes. It was nice though when I cam to pick her up because she said, "I missed you SO much Mama!". I'm glad she had a good time, but I love when she's excited to see me. It was nice to have eight hours off of giving meds and IV pumps beeping too.....I don't even get that at night so it was a wonderful treat.

I'll try to add pictures tomorrow. I have "touchy" internet right now so I have to be sitting at just the right angle, but hopefully that too will be short lived.

Holly

Friday, February 15, 2008 12:38 AM CST

Just a quick note today.

All is well. Maya's off school today and playing nicely with Hello Kitty this morning. Earlier (much earlier, like 2am) I woke up to a yelling match between Hello Kitty and Maya over who really needed the Ariel blanket and who needed the space blanket. About 15 minutes later she was sound asleep again. I swear sometimes I just don't understand that girl....love her dearly, just don't understand her. I think the older you get your imagination works in reverse and you forget how to imagine and immerse yourself in that world like children do.

Tomorrow Maya has plans and I have the whole day to myself. I have a date with my pillow, my bed, a warm blanket, and some sweet dreams! OH that and I just may have to go shopping! We'll see, I heard there were some good clearance sales going on so I may venture out and see if I can find any treasures.

It's still cold here. We got snow yesterday, but today it's just cold. This winter has been amazing. Very cold, very snowy.

I guess that's all I have. I'll try to update Monday as to our weekend adventures and hopefully have some pictures.

Holly

Wednesday, February 13, 2008 8:13 PM CST

Sorry for the delay in updates. I have very SLOW internet service right now. I'm not sure what's going on, but what a pain! Anyhow, none of that matters, it's info on Miss Mayafly you came here for :)

I have the final Christmas pictures to post...

Santa came to the hospital on Christmas Eve. She was so thrilled to get to spend time with him and get her presents directly from the source. He handed her each gift and talked about what it was with her. She was in heaven!

Medically, Maya's doing pretty well. She had a hard day today, but a lot of fun as well since she spent part of the day at school with her friends which she LOVED. It was her IEP today so the nurse took the time to spend with her and took to around to spend time with her friends and to visit in the lunchroom. A great day overall! Very tired Maya tonight though....all very much worth it.

Holly

Monday, February 11, 2008 9:57 AM CST

I didn't get a chance to get on last night and add more pictures so here they are! I have one more set after this of Maya meeting with Santa on Christmas Eve then I'll be caught up. I hope you've enjoyed catching up on her life in pictures.

While we were in a clown came to visit each week. One week she gave her a nose just like she had and Maya thought it looked like Rudolph's so she put it on with her antlers.

For Christmas she had gotten a Packer's cheerleading outfit and LOVED it, in fact there were many days that we could bearly peal it off of her, but we did eventually. Anyhow, here is Rudolph cheering on the Packer's.

As usual, Maya's favorite hospital activity included sorting her caps. She LOVES to play with her caps.

This picture is of Maya with her doctor, Sniggledoodle, on Christmas morning. She loves him dearly and the two of them together can get pretty goofy.

Nothing else new here. Maya is doing school this morning and we are waiting to hear on her labs. This evening she'll get her IVIG.

Holly

Saturday, February 9, 2008 8:42 PM CST

I still have more pics to catch up on so I thought I'd add a few more. Nothing new happening around here. It was a quiet day as Maya didn't feel well. These pictures are from when the cast of the Nutcracker Ballet came to Children's to perform for the kids. Maya absolutely LOVED it!

Enjoy!

Holly

Friday, February 8, 2008 9:56 PM CST

In case you missed yesterday I started my week in pictures as part of my catching up yesterday.

Today I thought I'd post a few pictures from her birthday. I don't have many with her in in them as she was REALLY not feeling well that day and I don't like to post pictures when she's like that, but I have some great pictures that capture how hard everyone worked to make her day special.....

Her TPN from her birthday!

The banner they made during the night and we woke up to on her birthday!

Her wonderful night nurse painted her door for her too!

Here is one quick picture taken in a brief good moment that day. That is her "after while, crocodile" that she received for her birthday.

Not too much else new here today. Maya had a good day, hoping for a nice quiet weekend staying warm as we approach more days of very low wind chills.

I'll post new pics tomorrow!

Holly

Thursday, February 7, 2008 11:21 AM CST

I finally have my new computer and can add some new pictures. I have so many to share from the past couple of months I thought I just do them over several days so check back frequently as I'll try and change them daily for a few days to get caught up.

When we were in the hospital this past time we had a few visitors. First she had the chance to visit with her cousin Autumn and auntie and uncle for a couple of days.

She was also very excited to get to visit with her friend Tait who came up to see her. He's in her class at school so this was an extra special visit too.

Right before she was admitted she was very excited to receive two scarves addressed to Maya and MIss Hello Kitty! They were from a dedicated Maya follower and she was thrilled to say they least.

As far as current news goes...Maya's doing really well. We are waiting to hear if she'll need blood or not and we are going to restart her diuril in hopes of clearing up the calcium in her urine. She is feeling good and very "spunky" to put it kindly. She continues to enjoy having Devin here to keep her company and eagerly awaits Kipper's joining the family in the next couple of months. We don't want to rush his coming in the hopes when he's ready to come he'll be able to fit in and work as well as providing companionship for Maya.

Holly

Sunday, February 3, 2008 9:55 AM CST

First off I want to say thanks to all of you who encouraged me to keep this journal going. Sometimes It's hard when you try to spend time updating and letting people have a glimps into your life and then don't even know if anyone is reading it or cares if you continue to update. I appreciate all your comments and even more all your prayer and support for us.

Not too much exciting in the life of Maya this week. Her teacher has been on vacation so she had lots of work here for school that needed to be done. I tried a couple of different ways to have her doing her work to see it it would help with her fatigue when doing "brain" work. There wasn't a lot that helped other than limiting her time working and the biggest help which was limiting the amount of handwriting that went with the work. Some of it I let her tell me and I wrote....she lasted much longer that way.

Thursday she saw the pediatrician and we did labs again. Things were ok, a few little things that we need to keep an eye on, but overall things looked good. Her retching and belly pain seems to be improving which is good especially considering the amount of antibiotics we gave for overgrowth. Hopefully she'll get a break from that for awhile.

Yesterday Maya realized she has a new loose tooth. I can't believe how big she's getting. She just looks so much older and acts older too. This week we have a dentist appointment, doctor appointment, school, speech, and a new nurse starting. We'll see how the nurse thing goes, it is always hard having someone new come into your home to work with your family. It will be nice though to have some additional help with her care.

Maya funny: This week Maya spent most of her time as her alter ego-"Super Tube Girl". She work her purple cape and pink sequins mask. While at the doctor she took a spill while "flying" and when later retelling her story she said, "I got hurt trying to fly...I'm not too good at flying anymore" (like she's been flying successfully her entire life!)

Hope everyone had a good weekend.

Tuesday, January 29, 2008 11:56 AM CST

I'm not sure how much this page gets read anymore so I thought I'd just add a quick update since it's been awhile in case people are still checking in.

Maya's been doing ok. We've had a lot of issues with overgrowth so we've done a couple of weeks of different antibiotics to see if that will help the situation. It seems to as we are seeing a lot less retching and she seems to be more alert and playful. Still deals with lots of output through her G and J tubes, but nothing we can't make up for with extra IV fluids.

This weekend we had a visit from Nana and Papa. It was a lot of fun to play and visit with them. Unfortunately we had lots to get done while there were there so Papa was pretty busy, but we are so thankful for his help. Maya ended up sleeping a lot for a couple of days since she had SOOO MUCH FUN! as she told me.

School is going well here at home as long as it's done in short sessions. Works for us so that's what we are doing and she's learning a lot.

Holly

Friday, January 18, 2008 9:24 PM CST

Sorry for the delay. It's not been the best week around here, but hopefully Maya will turn that around this weekend. She's having lots of belly issues and nose bleeds. We've tried increasing her fluids and we'll see if this helps her out.

She's had fun in the midst of things. We celebrated her birthday (again) at Chuck E Cheese with her nurse and a few kids last night. She had a ball and we went early enough we had the place almost to ourselves. She's talking about the Packer's a lot thanks to her speech teacher and is looking forward to Sunday's game. She already has her cheerleader outfit out and ready to go. We also finished up her Christmas stuff and I've finally packed away the decorations. It's good to have it over and done, but it's been fun to see her understanding of Christmas expand this year as she played with her nativity and see her excitement at the items she's received. Not sure if I shared, but when playing the other day the wise man was very wise. He was charging admission to see Jesus and when the lamb asked why he answered, "how do you think I got this gold!"

We are in for a very cold weekend here, wherever you are I hope everyone stays warm. We'll be lucky to hit 0 tomorrow and they said -20 for tonight.

Holly

Tuesday, January 15, 2008 9:27 AM CST

Please keep Jakey in your prayers.. www.caringbridge.org/wi/jacobdavid.
I had a call from Karla last night that he was not doing well and was being moved to the PICU. I got Devin up and packed so he could go up there with her then. If you have a minute please go offer them a word of encouragment, I'm sure she could use it.

On the Maya front (this always seems so insignificant when there is an issue with another child). She's doing well with the exception of some bacterial overgrowth issues. We are hoping to start Flagyl today and get that under control. This means squeezing in another 3 doses of antibiotics and cutting into my precious 4 hours of sleep, but it'll be worth it if it works since right now my sleep is interuppted with her pain and retching anyhow. She really deserves to have some good sleep and rest from this issue. Yesterday was a really off day for her all over, but today already she's doing much better. I can always judge our day by how school goes in the morning. Her teacher is here right now and she's writing and reading pretty well today. She's very excited that the teacher forgot to leave homework yesterday too!!!

Hopefully today we'll get things unpacked the rest of the way and settled before Nana and Papa come to have a late Christmas and visit this weekend.

Thanks for checking in. Sorry the pictures and layout are old, I promise to change once I have a computer again and don't need to borrow on.

Holly

Saturday, January 12, 2008 10:26 PM CST

Sorry for the delay. I don't currently have a working computer, but hopefully will soon. Anyhow, we are home (since Monday) and all is well. Of course, well in our home isn't well in many, but things are good. Maya's having some rough patches through the day, but nothing a hit of her button, a heating pad, and Mama can't deal with. She's so happy to be home again and in love with her Christmas gifts. She got a huge Tutu for her birthday that she finally received this week and it too cute in it. I can't wait for a computer so I can share some pictures. We've played many games of Uno Attack and watched High School Musical a few times. She loved everything, but those were some of the highlights. She misses her friends from CHW, but does not want to visit anytime soon. Unfortunately it won't be that long as we'll be there the 22nd and 23rd for appointments (outpatient at least!)

We have a houseguest right now. Maya is loving having a "brother" and Webkins world is pretty much the play of choice right now. Lets also say there is lots of giggling and a very tired little girl by the end of the day.

Thanks for continuing to check on Maya, I should be able to keep things updated now.

Holly

Saturday, January 5, 2008 9:56 PM CST

Well, we'll be homegoing on Monday! Not sure how long before I'll have computer access at home so this may the the last update for a week or so. Hopefully I'll have a computer sooner though. I have so many pictures from Christmas and her Birthday I'd love to share

We will be home on a couple of IV antibiotics and she's also back on calcitonin to keep her calcium levels where they need to be. This in addition to her regular meds and TPN, etc. I had some help coming up with a schedule, but what we have shold work nicely.

Thanks for checking in and all the calls, visits, emails, e-cards, hospital cards, and support we've had this admission. It's been nice to know there are people out there reading and understanding this never becomes routine to us.

Holly

Wednesday, January 2, 2008 0:08 AM CST

Happy New Year!!

Maya is doing pretty well. We are chasing some issues with hypercalcimia which in turn leads to dealing with some other issues so it's a balancing act trying to get things to a happy medium where her body wants to cooperate again. Any little insult to her system such as an infection seems to set off this cascade. In fact, this whole infection episode was set off by the virus she had initially.

I have to add a Maya funny! The other evening her doctor came in and Maya wasn't feeling well. She was staring and not talking to anyone. He looked at us and said, "she's out to lunch" She then proved him wrong, but saying, "I'm not out to lunch Dr G I do not eat food."

Maya was also pretty excited on Monday to see one of her school friends, Tait and his family. They came to visit since they were in Milwaukee visiting family. It was fun to have a visit from friends from back home and Maya was excited as always to get some cards from her friends at school and also a neat ball and some fun Hello Kitty stuff from her friend. Her school friends have been so good to her this year making cards for different holidays and when she's sick. She always enjoyed looking through them and saves them in her "treasure" box at home.

Holly

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