Journal History

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Sunday, December 30, 2007 10:21 PM CST

We are still here dealing with some issues with Maya's heartrate and blood pressure. She's also having some calcium issues again and is not a happy camper. Hopefully tomorrow will go better and we can move forward. I'd love to get her home this week. Three weeks is just too long in my book.

We had a good weekend with Uncle Mitch, Aunt Rhonda, and Autumn coming for a visit today and last evening. Maya enjoyed seeing her cousin and playing with her Christmas toys and games. I was glad not to have to play another round of the Hello Kitty match game or "language bingo". Maya also had a chance to wear her Packers gear again to cheer on the Packers today and was very excited. She couldn't decide if they were playing soccer or basketball, but liked the idea of cheering none the less. I guess we need to work on our sports with her.

This will the the second New Year's we've rung in at Children's. Not really an exciting fact, but a fact. Maybe I'll celebrate with the apple juice I found today that had rolled behind the couch (cot/bed/vinyl torture table). I'm not sure how long it's been there, but the last time I bought Apple juice was over a week ago! I have a better thought, maybe I'll just have a shot of cough syrup and call it good.

holly

Friday, December 28, 2007 8:24 AM CST

Good Morning! Maya said last night as she fell asleep, "Is Santa coming again tonight?" When we told her no she was so sad, saying, "I want him to come every night." I told her how lucky she was since he'd been to our house while we were here and when she got home she'd have presents there to open too. That seemed to do it for her and she fell asleep.

Later in the night she woke up with pain in her back and tummy, we tried all our tricks and bolused her from her PCA, but she continued to have pain and a high heart rate. She eventually spiked a temp so the thought is she has some sort of infection going on. They just did labs again so we'll see what turns up.

Maya has had so much fun with her toys from Christmas and with the mail she receives. We were excited yesterday to hear from some friends in Sweden we'd not heard from in a long time. Thanks for checking in and we'll keep updated as I know more.

Holly

Monday, December 24, 2007 10:20 PM CST

Christmas eve! We spent our evening reading the story of Christ's birth and singing some Christmas songs. Maya has much of the Christmas story memorized and likes the part about Mary visiting Elizabeth and then of course the angels and the shephards. We also talked about the story of the Little Drummer Boy and how important it is to leave our anger and just worship the King, bringing him whatever gifts we do have no matter how small or seemingly not "good enough" for him. I love that she understands so much of this and wants to learn and grow to love Jesus and be more like him. As I tucked her in she turned and said, "thanks Mama for holding me and singing tonight, I'm so lucky to have you as my Mama."

Things continue to move forward here. She is doing ok although she'll need blood tomorrow (as I recall she got blood last Christmas also). I've not been too well and spent yesterday in the ER at an ajoining hospital. When we do something we do it up well!

This morning Santa came to visit. She was thrilled and so excited about what he'd brought her. She got a stuffed "My Melody" which is Hello Kitty's bunny friend and Ariel's head (no this is not some gross princess toy, but rather one of those heads you can do hair and make-up on). She got some other things too, but those were the big hits. I on the other hand found this box that looks like a picket fence in the trash outside the gift shop and gave it to her for Christmas. She loved that too....so easy to please!

I hope you all have a wonderful day celebrating the birth of our Lord! Merry Christmas.

Thursday, December 20, 2007 3:20 PM CST

Here were are, still at Children's in room 427 and for those who've asked at 414-607-5027.

Not sure what the plan is for sure now since her calcium was a bit too high today and we need to see where we are going with that. She's keeping busy playing with her stuffed animals, doing school with her teacher, physical therapy, and all the other "fun" stuff taht goes wiht being in the hospital.

She hasn't said too much about Christmas unless asked or prompted, but I think that is just the environment we are in. She does have a few Christmas tree's in here....a pink, a purple, and a green....thanks Christmas fairy!

Thanks to everyone who's made Maya's season a bit brighter, we reallly appreciate it.

Tuesday, December 18, 2007 5:48 PM CST

Maya absolutely loved the Nutcracker yesterday! She was so enthralled with the entire thing I don't think you could have gotten her attention away from the dancing if you had tried. We got lots of pictures and she got autographs afterwards so she thought she was pretty hot stuff.

We are planning on coming home either Thursday or Friday and will continue meds for several more weeks. We are doing ethanol locks and also Vanco and Gent right now. Hopefully this weekend I can get her out to see Santa as she's been wanting to see him for awhile and I promised her we'd go. She also wants to do her Christmas shopping so I'm not sure what we'll do about that as I'd like her to avoid the crowds. We missed the Christmas party we usually see Santa at this year so we'll have to face the mall I guess.

She's still pretty sleepy most of the time although she's up for a few hours a couple times a day. Seems to be this is just part of how her recovery will go. They really need the beds here so between that and the holidays I think we are lucking out and escaping a bit earlier than usual.

She did get her FM system today and I can't wait to see it in action with her schooling, etc. Right now it is just a fun, expensive "toy" we've all played with today seeing how far we can get away and still communicate with her (past the elevators by the way)!

Hope everyone is having a good week.

Holly

Friday, December 14, 2007 6:05 PM CST

I'm sorry, I honestly thought I had updated since Tuesday.

Maya had a wonderful birthday thanks to her nurses, family, and so many of you who sent cards and well wishes online! She was so thrilled to celebrate turning 9 and to hear from everyone. Thanks for helping make this day special for her. I can't wait to share the pictures of her day. One of her nurses went all out decorating her room with Hello Kitty and painted her door with Princess Mayafly.

We found she is growing multiple organisms and we are treating with multiple antibiotics. Hopefully several weeks of this and she will be able to save her line and move back to enjoying her time at home again. Her cough continues to be gunky so today she was started on respiratory treatments to see if we can open things up for her and get her cleared up more.

Monday the Nutcracker will be here. Maya is so excited since she LOVES dancing. Today it was the Globetrotters and last night the local police. She tried to steal their flashlight! So, she's staying busy. She also had school today, but had to quit early as she was't feeling well.

Holly

Tuesday, December 11, 2007 7:14 PM CST

I got my wake up call about 1:15 this morning! Maya has positive blood cultures and had a temp of 106.8. Her temp is back down but she's tired and needs some blood. Overall she looks pretty good and hopefully we avoided anything too serious. Due to some bad weather in Milwaukee we weren't able to be transported until about 3pm this afternoon, but we're here now and settled in. Tomorrow is her big birthday...if you have a chance I'm sure she'd love an e-card off the website.

This is great...When I got on the plane the nurse offered me a USA today to read. I opened it up and the first thing I saw was an article talking about the risk of small and large planes icing up in the winter and causing them to crash! It went on to say how much mroe risky it was to be in a small plane. I told them it was great PR! LOL!

The phone number here is: (414) 607-5027.

For those of you who asked the address is:
Maya Owens-Weiss Rm 427
Children's Hospital of Wisconsin
PO Box 1997
Milwaukee, WI 53201-1997

Sunday, December 9, 2007 8:51 PM CST

The weekend went pretty well. Maya's had some on and off low grade temps and a cough, but was able to go and enjoy a concert on Saturday night with some friends. She had a good time and enjoyed seeing all the Christmas lights on her way there.

Friday she got to listen to her class play their recorders on her web cam. She always enjoys talking with the kids at school and LOVED hearing them play.



On Saturday she got all dressed up in her India outfit and looked so grown up. I can't believe she's going to be 9!



This afternoon we watched Elf. It was good to see her laugh and laugh at something. We also worked on decorating some things she's making for Christmas gifts and read a few books. A busy day considering she didn't get out of bed until after 12noon.

Not too much else here. Remember Jacob in your prayers as he was just discharged from the hospital after an admission with pneumonia. You can visit him at www.caringbridge.org/wi/jacobdavid

Monday, December 3, 2007 2:18 PM CST

I know it's an old picture on top, but it's one of my favorites and Maya's really in no mood for pictures right now. We went to see the doctor this morning and she has a lot of drainage on her tonsils and although it isn't strep she has some sort of infection going on in there. She's very tired and has been sleeping basically all day. She also has a sore on her nose which we are wondering if it isn't MRSA again so we are starting to treat that in hopes we can avoid her line getting infected with that again. This is the big week to start her new diuretic. This is something we are trying to reduce the amount of calcium in her urine. Most likely we'll need to increase labs and maybe make some TPN changes this week because of this, but we'll have to play it by ear.

Not much else going on here. I have to go back to the doctor a couple times this week to discuss where we go from here with my post op stuff and to make sure we don't need to do any further repair at this time.

Continuing to keep Anne and the entire Juhlman family in our prayers as today is Zach's memorial. www.caringbridge.org/wi/zachsam

Holly

Saturday, December 1, 2007 9:24 PM CST

What a cold day here...I guess winter has actually come to stay! We got snow first and now it is just a layer of ice on top of everything. So glad we have no were to go this weekend. We are just getting things out for Christmas decorating and watching movies. Tomorrow we are going to watch Heidi and today we watched Brother Bear and Rudolph the Red Nosed Reindeer. Maya is so excited about Christmas and her birthday coming up. i can't believe she is going to be 9 already.

She's been feeling pretty good and I'm healing too. She is very careful to take good care of me and is always asking to see my owies or if my belly hurts like hers. It's been great to have time to snuggle on the couch with her and just spend time together. She loves being read to so we do lots of stories too.

This week she made a few Christmas crafts that are so cute. I'll try to get pictures of her with them so I can post them here along with some new pics of here. I need to take one for our Christmas card...time is just getting away from me and if I'm up too long I get really sore and worn out so I have to pace myself. It is getting lots better though so hopefully in the next day or two I'll get some posted here.

We did have a g-tube issue here this week which I'm still trying to figure out. She pulled out her g-tube climbing into bed and usually takes an 18fr. She's been this size since she was 3 so it isn't a big deal usually to get one back in. Well, I've still got her in a 14 and can't get anything bigger in her. I have no idea why, but she's not leaking around it so I'm not sure if it matters at all. her J tube is a 14 so that's why I had that around to put in. It's been a long time since we've had any real g-tube issues to deal with since it is just used for venting anymore and hooked up to drain all the time.

Thanks for checking on us. I hope everyone is staying safe and warm this weekend.

Holly

Wednesday, November 28, 2007 7:51 PM CST

Please keep the Juhlman family in your prayers as their son Zachary earned his wings Monday night. Zach joined his "bestest brother" Sam. My heart goes out to their entire family and very much to their mother, Anne who's helped us often in our own journey....

Here on our homefront...Maya had a fever Monday, we did cultures and they stayed negative so things look good with that. She seems ok and other than getting up at 2am this morning and being very hyper and talkative today she's having a good week. In the mornings she's been doing school and helping her nurses when she's able to (or giving them a hard time however you look at it, LOL).

As I'm now 3 weeks post op I've taken back on some of Maya's care which has made me tired, but feeling like I'm back to living again. This week we've had some setbacks and I had to go have a CT scan yesterday so with some modifications I'm pushing forward and we'll see how things go. For the time being we are both here at home though and enjoying being together. Maya is anticipating her birthday in just 2 weeks although I've told her we'll be counting backwards, she does NOT think this is funny at all!

Well, I need to go get her TPN going and get her cathed for bed. I'll try to update sooner than later as I'm up and about more now.

Holly

Thursday, November 22, 2007 8:10 AM CST

Thanksgiving! And so much to be thankful for.....

Last month as we prepared for our interview for Children's Miracle Network I looked back at how many days Maya spent in the hospital this year. Even with the last admission it has been less than 100 days. She's been inpatient 94 days this year and although to many this may sound like a lot it was just two short years ago she spent over 200 days inpatient. What a wonderful improvement and testiment to the wonderful team of physicians we have working with her and keeping her home where she most belongs. We've really changed our focus to her quality of life and I'm so thankful that this year I can see how much that has been a benefit to her. She has her power chair now and this has given her so much freedom and a new way to be a kid again.

I'm so thankful for our wonderful nurses both in the hospital and here at home. We are so blessed with a team of people who not only care about Maya but have the skills to care for her needs. Our team of homecare nurses came through 110% after my surgery and have put in so much time and love into caring for Maya. We have wonderful friends and family who have been there for us every step of our journey.

Most of all I'm so thankful for my little girl. She's growing, learning, and becoming a bright young lady. Although I tell her often she's not aloud to grow up and needs to stay my little girl FOREVER! She is such a blessing and has really blossomed this year. She is always making me smile, laugh, and remember what is really important in life. She is also such a testament to living our faith. She so simply just BELIEVES. She knows God is always with her, guiding her, helping her. She never doubts his presense or hesitates to share His love or the part He plays in her life with others.

I'm thankful too for all of you readers who continue to walk this journey with us. We cherish your prayers, your thoughts, and your support. We thank you for sticking with us and making sure we are never alone. We are SO BLESSED.

Happy Thanksgiving!

Holly

Friday, November 16, 2007 6:49 PM CST

Sorry for the long delay. Things have been a whirlwind here. I had surgery on the fifth and was just discharged a couple of days ago. May was admitted with an infection to the ICU on the 9th and came home on Tuesday. So here we sit, both trying to recovery. I have to say I have no idea how this child does what she does. I had a big surgery and will have a fairly long recovery, but I'm already tired of it and ready to have this all behind me. I feel like a big baby with my "basket of meds" and not being able to do much of anything, including her most of her car at this point due to restrictions. Maya endures so much and after a week and a half I was lucky enough to get my central line removed, catheter out, and leave most of the medical stuff behind me while this is what she deals with on an everyday basis and doesn't utter a word about it. She's my hero and my strength. Such a strong, brave little girl. Faced her first "alone" admission as Mama was too sick to even make the trip upstairs to visit much. She was surrounded by good nurses and friends much of the time, but away from her norm in an unfamiliar hospital. She didn't complain and did very well. We both have a week of antibiotics left. Mine for pneumonia and hers for her infection. Hers of course are IV so this adds a bit of work here. Right now I have extra nursing help so it's all going well.

Thanks for all of you who have stuck by in my absence. Hopefully soon I'll be back to updating more on a regular basis and get some new pictures on here. We both have appontment's early next week so I'll update after that as long as nothing else changes.

Holly

Saturday, November 3, 2007 11:56 PM CDT

Hi! Maya is enjoying visiting with her Nana and Papa this weekend and spending a quiet weekend at home. She is having some line issues so we did cultures this morning and started her on Vanco in addition to the oral antibiotic she's already on. I think this should take care of the problem.

I don't have much to report on. Just wanted to update a little and let you know I won't be updating for a week or so. I will try to get Karla to add some picture and if she has time update briefly on what's up with Maya and hopefully will be back in full working order soon.

Please continue to keep our friends Zach and Alex in your prayers as they still are both in the PICU facing struggles of their own. I know their families appreciate all the prayers they can get.

Holly

Tuesday, October 30, 2007 6:44 PM CDT

Our weekend here was quiet and enjoyable. Maya was feeling pretty good all weekend and spent most of it playing with her "little people". There were all sorts of fun activities happening on our livingroom floor...a circus, a flood, mountian climbing, and cliff diving!

Monday we headed to the doctor and things looked good there. Her labs are pretty good and looking better than than have been over the past couple of weeks. Maya got a tiarra and sash that says "beauty queen" from one of the girls in the lab and by the time we left had the wave down perfect. She also would bow and say "thank you-thank you" if you commented on how nice she looked. She is such a crack up sometimes.

Today it was back to school which was hard on her and she pretty much slept the rest of the day away until I made her wake up this afternoon for at least a few hours before bed. It's amazing how much "brain drain" affects her pain, gastric issues, and neurologic issues.

She is so looking forward to tomorrow night. As you can see above, she is going to be Snow White and can't wait. We are going out with Jakey and his family so the kids can go together and it always seems easier when your with someone else in a wheelchair. Maya can't eat candy so I'm planning on exchanging her candy for dimes. Yesterday a friend said to make sure we stop by her house and Maya "politely" responded with, "I don't eat can't, but you could give me something else!" I have to say, she has no problems speaking up for herself. We also decided today during speech that she has no issues with self esteem since when asked what she really likes she stated the fact that she's "so beautiful".

Well, I'll be sure to update after our adventures tomorrow night. I'm guessing we'll have lots to share.

Holly

Thursday, October 25, 2007 10:14 PM CDT

First I want to start by asking for prayers for two of our friends, Zach and Alex who have mito who are struggling in the ICU with different issues, but both fighting bravely and strong. They and their families and all in need lots of prayers. I was thankful we had the chance to stop in and at least offer a few minutes of support to their moms on Tuesday when we were at Children's.

Maya's been doing pretty well. She continues to struggle with kidney issues and we saw nephrology this week. We did a renal u/s and a 24 hour urine to look at some stone issues and try to come up with a plan that will hopefully better deal with the renal wasting issues she has.

While we were in Milwaukee we got to visit with several of Maya's nurses which she loved and it was fun for them to see her healthy. She also had to share her pictures of Hello Kitty's trip to Hawaii (which was was informed was not actually attended by Hello Kitty, but rather her twin, Mimi). We decided to take Hello Kitty (or Mimi's) picture several places around Children's. Maya had so much fun with her pictures.







Not too much else here. She is highly anticipating her debut as Snow White next Wednesday and other than that she spends her days playing Hello Kitty and doing her crafty stuff and playing "caps".

Yesterday she decorated some really fun masks she got (thanks!). She had so much fun. The black circle on the "Boo" is the "ghost mouth" from what I was told. "Momma...it's where the boo's come out!"





Thanks for continuing to check in.

Holly

Friday, October 19, 2007 9:15 PM CDT

Wow, this month is flying by. Maya keeps telling me she knows it is fall because the leaves are falling, but we looked today and they are pretty much all off the trees here. I don't even what to say what that means. If we could just have a month of the next season and move on to spring I'd be good. I like winter until about Christmas then I'm done with it.

This morning she got up and had school with her teacher. She did a great job. She's not been able to connect with the kids from her class much yet this year, but they do write letters and sent her "button" back and forth with messages to each other. Yesterday she went in for adaptive PT so she did get to see some of the kids when she worked with her teacher. For the most part though her teacher and speech therapist are coming here and it is working wonderful for her. She's really making nice progress with her reading and math, I'm so proud of her.

Today we did our interview for CMN on the radio. Maya did a good job speaking up and answering questions. She also spelled Mississippi (her favorite river), sang "God Bless America" and the "Alphabet Song", and told them about her doctor Sniggledoodle and her alter ego-Super T! She was there with her cape and mask on. Such a funny girl. She is gives me so many reasons to smile! We were practicing for them to answer questions today before we left home and I asked her if she was ever scared in the hospital. She looked at me like I was missing my head and said, "why? You are always with me and Jesus is in my heart, I don't need to be scared" What more is there to say. I need to take her advice!

Yesterday she got her pictures from her nurse who took Hello Kitty with her on vacation to Hawaii this summer. Maya was thrilled to see all the adventures Hello Kitty had.

Well, I'm hoping to get copies of the pictures from today and a copy of the song/interview. Maya got to meet Miss Wisconsin and was just thrilled. She was so happy they had brought her "her very own princess" to talk to. She also got to try on the crown and have her picture taken and signed with her. it was really a special visit for her.

We are hoping to go to an art event at the Children's Museum tomorrow if her tummy cooperates. After today I'm not sure as she spent about 3 hours tonight retching and throwing up to the point she was bleeding some tonight. I'm thinking she just pushed herself too much today and tomorrow should be ok again, but we'll see. No fevers so I'm not too worried at this point.

Monday is IVIG and Tuesday is Milwaukee again.

Holly

Thursday, October 18, 2007 8:00 PM CDT

Tomorrow at 2:30 those of you who are local can tune into CC106.3 to hear Maya on the Children's Miracle Network Radiothon. If you check out their website you can hear her song and my earlier "interview".

CMN Radiothon Link click on the CMN balloon and then scroll down to her name.

I wasn't sure how it would turn out. I always have a hard time expressing myself in just a few words then when things get edited I'm afraid they sound like my focus is not where it really is. It sounded like I focused on the fact she is adopted which is so NOT what I was trying to do. That is just a matter of how we became family and nothing more. She is a gift, that's for sure, but I never wanted it to sound like it has anything to do with who we are as a family. I had also hoped there would have been more said about her diagnosis, but I hope to be able to say something tomorrow just to build some awareness as so many people listen and understand cancer, diabetes, and the other things kids face, but have never heard about mito. I'd love to have some part in increasing that awareness and understanding. What we deal with is as life changing as those other illnesses.

That being said, they did the one thing I really wanted, which was focused on her life and who she is. Because this has been our "always" and our "normal" I don't have the "befores and afters" to compare things to as many people do and because this is our "forever" it's really just about life and how we live it. Maya is such a teacher to me about how to live. I can't wait to hear her tomorrow on the radio.

Other than that things are about the same here. We are off to Milwaukee on Tuesday to see nephrology for her kidney issues and Monday she'll be here at our local hospital for her IVIG. I'll try to get some pictures tomorrow to share this weekend with you all. Thanks to everyone who's taken the time to sign the guestbook, it was nice to see who's been visiting.

Holly

Sunday, October 14, 2007 8:38 PM CDT

This weekend we headed out to the pumpkin patch to get Maya's pumpkins. Basically she just wanted gourds so that's what we got. She'd already had a delivery from the "Great Pumpkin" and had a big orange pumpkin at home so she choose a couple of small white ones and some gourds and was so happy with her selections.



We also had to stop and pick up some pumpkin socks because she had it in her head this was necessary and besides she was not happy with the way her socks were matching last week (I think she gets this from me, LOL). Anyhow, she got some little pumpkin socks and we did some driving practice through the mall after the patch yesterday. I'm glad we got out because she was feeling pretty good and today it turned out to be rainy and she slept all day with belly pain so thankfully we took advantage of yesterday.

She also got a package from Nana in the mail, but was most excited by the fact pookie liked the box.



This week we are pretty busy with doctor appointments and her school work. Hopefully I'll have more of a chance to update this week as I know more after she sees the doctor and we get some other details worked out. I'll leave you with one last picture of our pumpkin girl!!!



Holly

Tuesday, October 9, 2007 10:10 AM CDT

Thanks Chuck for reminding me it's been a week! I'm not always sure if people are reading so I don't think about updating as much lately. Last week was busy, but good busy!

Thursday night we had gone to the torchlight parade which was a lot of fun as always. Maya loves to see all the bands and floats all lit up and had the chance to see some of her friends in the parade also. We were able to go and sit with friends which was a lot of fun as Maya reallly enjoys the company of her nurse's kids. The parade was a little overstimulating for her, but overall she had a great time and is still guarding her loot like it's the world's most sought after treasure.

Friday she was in the homecoming parade for school and rode on the float for her elementary school. She really enjoyed riding and waving at all the people as we went through town. Afterward we stopped in at school and met her teacher for the first time and said "hi" to her classmates.

This weekend was really hot so we hung out and home and watched movies. Maya loves Ramona and the Mouse and the Motorcycle. I'd found a Ramona episode on ebay along with two of the Mouse movies so we watched those. It was fun to sit together and share something I remember loving when I was a kid.

This week we are back to school. This morning she did math and reading with her teacher and now is doing speech with her therapist. She's so proud of her math as she's adding 3 single digits now. She is doing so well in school here at home. It was pretty obvious in seeing her after the parade that she's not going to tolerate going to school any time soon as that short time wiped her out for the rest of the day.

Please know how much your words of encouragement mean to us. Although things are going well now each day is a challenge and Maya faces each one bravely and with so much life. I know some people come here daily, some weekly, and some just occasionally, but more than that, many come that we've never met. We'd love for all our lurkers to say hi in the guestbook and the rest of you to leave a note occasionally. There is nothing right or wrong to say, just know we draw daily encouragement from knowing you are there walking this journey with us.

Holly

Monday, October 1, 2007 8:42 PM CDT

I can't believe it's October already. We've had some rainy weather, but there have been lots of breaks in the day too. Sunday we went to the park so Maya could practice driving her chair and get out of the house for a bit. Once again she had such a good time going full speed and chasing me around. She also realized that she can go on grass to so now she is quite the dare devil. So fun to watch her really love her freedom.



The rest of the weekend she spent playing dress up with her Hello Kitties and watching her new Dora-mermaid movie. She also did some math which she informed me is "really easy" and we read lots of book. She just loves to be read too. Right now we are reading Pippi Longstocking which she absolutely loves. Here's another picture from our weekend from her playing dress up.



Today was her weekly clinic visit and she had labs. Things looked pretty good with her labs, but I'm thinking we should have done a u/a too. She's having a lot of sediment in her urine so we'll see if that continues. Everything else was looking good and other than labs Thursday we don't have any other medical stuff this week. Lots of fun though! School, Specialfester day, homecoming parade, torchlight parade....so much fun in fall! Tonight with her nurse she made the cutest little bats and ghosts...I'll have to get her to hold them up and show pictures soon.

Thanks for continuing to check on us and as always we love hearing from you when you have a chance in the guestbook. Those entries are always a very bright spot in our day.

Thursday, September 27, 2007 10:09 PM CDT

Not much change this week. Maya is still dealing with a lot of retching and belly issues, but we did finally get her pain better controlled by increasing her continuous rate on her pain pump. She also has been feeling pretty good except for the moments her belly is actually acting up which is another reason I'm hoping we are moving through this episode. We started her on antibiotics on Wednesday in hopes of maybe getting ahold of the bacteria that seem to take off her her gut and keep her from getting anything more serious than what we are dealing with now.

Today we had our interview for Children's Miracle Network. As much as I love talking about my butterfly and as much as I have learned from her I still have a hard time talking about her. I guess in my mind this is just what I do and how we live our lives, nothing really special or out of the ordinary so when things are spelled out in front of me and questions asked I have to step back and really think about what our life is like from the perspective of those not living with special kids and how they must see it. not sure if that makes sense, but it did in my head. Sometimes what is in my head doesn't come out of my fingers making the same sense, LOL.

Other than that her labs looked good today and she's been doing school and speech each morning with her teachers. She is LOVING learning. I can't believe how well she is doing with reading and her adding. She is such a hard worker and works so hard to please. She wll work until her body just gives out so it is hard to know when to stop her or when to just let her push herself. The problem with pushing is it can wipe out the entire day for her and sometimes the next day. Even lots of "brain" exercise can set her off with retching sometimes. Then there is the whole thing about being 8. When your 8 you have to have time to just be a kid too. You have to have time to talk to Hello Kitty and giggle over silly jokes with her, you have to have time to hide the alcohol wipes from your mom so she thinks she's losing her mind and you can laugh your little head off with glee, and you have to HAVE to have time to put on your gown and boa, jewels and tiara so you can parade around like the PRINCESS you really are! Of course, being able to add two digits to equal a number greater than TEN was really cool too and she is SO VERY proud of herself. Can you tell how much i love her? Everything she learns...academic or lifeademic is such a wonder to her.

On another note...we have so many friends in need of prayer to night. Jacob is not doing well again and last I heard her was headed back to Rochester to the ER, Sweet Baby Grayson had his heart surgery today and needs lots of prayers for healing without any problems, and our friend Zach is recovering from surgery and has many issues that complicate his recovery. Of Course all their parents need prayers as much as they do as they are the ones sitting bedside tonight watching their sweet little ones.

Holly

Monday, September 24, 2007 8:56 PM CDT

We had an ok weekend. Maya still isn't feeling the greatest, but she has her ups and downs so we take advantage of the ups and went on a ride to the river Sunday and a trip to her "bridge" park on Saturday. She doesn't last real long when we are out, but loves to get out and have fun. Sunday at Riverside she was playing tag with me in her power chair. I had turned the speed all the way up and she was laughing so hard. I realized I hadn't seen her so carefree and full of freedom when she played for years. Usually when she plays she is either pulling her rolling backpack and wrangling tubes or has been in her manual chair needing someone to push her and had no freedom or control. It was pure joy in her face and one of the best "mommy moments" I've had in years. She was laughing so hard that she had the whole park laughing with her. Everyone we passed could not miss the pure abandon on her face.

Today was IVIG and she had school with her adaptive tech teacher this afternoon. Can't really tell you how school went since I slept through it (smile), but she seemed to have a good time. Tonight she's running a temp and very shaky. Hopefully just the effect of the IVIG and not more "weirdness" to add to her other strange symptoms we've been dealing with for over a week now. She's really not been feeling well for about the past 10 days.

The rest of our week is filled with school, a radio interview for CMN, and catching up on our rest now that we are finished with antibiotics from her last infection. That means no more getting up at 3am to give med and getting back up at 5am for the day to continue meds! That in itself is enough reason to look forword to this week.

Holly

Friday, September 21, 2007 1:11 AM CDT

Not too much excitement this week. Maya's not really feeling her best, but she presses on. She did do school each morning and had speech also. We haven't gotten out this week at all except for a clinic visit and again for labs. Both of us have been a bit under the weather. In between not feeling well she does have some reallly good times and today was playing in bed as Super Tube Girl! She came up with a new costume out of her dress up box...



She also spent some quality Pookie time...



And did some "couch exercises" with the ladies on PBS who do the "chair exercising" each morning, LOL!



That's about it for our week...not too bad, nice and quiet. We have so many friends who could use your prayers right now though. Jakey is in the hospital and so is our friend Zach who's going to have surgery soon. Another little boy we know earned his wings this week so please keep Connor's family in your prayers also. There are so many more it's hard not to just list them all.....

Thanks for checking in on us!

Holly

Saturday, September 15, 2007 2:23 PM CDT

Our week went pretty well. Maya had a couple of appointments, IVIG, and labs again on Thursday. We hit a little bump in the road yesterday with some bleeding, but things seem to be calmer today so I'm hoping it was nothing. She had a lot of blood in her urine so I'm not sure what that's about, but it's gone for now and we'll leave it at that.

She did get to have school and speech here at home most of the week and really enjoyed getting back into the swing of things. She's not been up a whole lot, but is awake and playful here at home and still so thrilled to be home with her kitty. I don't have much more to share, but some pictures of our week to leave you with....

HANGING WITH POOKIE ON THE COUCH


LOOKING FOR TREASURE WITH MY BUDDY JACOB--I THINK HE WAS BORED!


MORE POOKIE SNUGGLES


TELLING SECRETS


TALKING TO MY COUSIN AUTUMN


TAKING ON OF MY SEVERAL SNOOZES...


Thanks for checking in on us.....

Holly

Tuesday, September 11, 2007 10:04 PM CDT

Not too much exciting here. We are keeping busy with Maya's care and lots of resting on her part. She doesn't really have her strength back so little activities like going from the bedroom to the living room wear her out. She did have a nurse this evening for a few hours so she got a shower and her hair washed which was a much needed thing as she's having some issues with her tummy that are most likely due to all the antibiotics she's on.

This morning she had school and speech here at home. She worked hard and did really well. We watched the Mouse and the Motorcycle this afternoon. Maya really enjoyed it and it was fun to see her enjoy something I remember from elementary school.

Tomorrow she's due for labs again. Monday's looked pretty good with the exception of a few that have been elevated for while so nothing new. Hopefully things will continue to look good for her and we can keep moving back toward where she was before we went in this time.

Here are Maya and Pookie...enjoying being back together.

Saturday, September 8, 2007 12:50 AM CDT

We are home! Not much time for an update, but I'll try to get on later this weekend and update more and hopefully add pictures of Pookie and Maya's reunion. They were so happy to see each other and couldn't get enough of each other for hours! Until then I need to go keep up with my work...another day or so I'm sure I'll have this routine down a bit better.

Just wanted to say we are safe and happy here at home and Maya is doing well. We are in the hospital Monday for IVIG and hopefully will be back at school this week too. Maya is really missing her teacher and her speech teacher. She was talking today about how much she's looking forward to seeing everyone again and learing lots of new things this year. She told me she was so lucky to have so many teachers..."my speech teacher, my hopistal teacher, my 3rd grade teacher, Miss Deb, and all those other teachers who teach me stuff, Mama!" I agree, she's a lucky girl.

Holly

Thursday, September 6, 2007 8:55 AM CDT

We are hanging around one more day. Hopefully that will be it then. She needs some blood today and we are adding another antibiotic. I'm hoping that will give her the energy she needs to get back in the swing of things. She is doing ok for a few hours in the morning, but then seems to really tire out and be done for the rest of the day and pretty much sleep all afternoon. We found that one of the bugs which isn't showing up now, but did in the beginning isn't succeptable to what she's on so that's why she needs the additional med. Hoping this is the trick to her getting all the way better so we can have another LONG stay at home and away from club med. Not that we don't have great nurses taking care of us here and going out of there way to make this the best possible experience for her, but home is home and Maya has the pressing matter of third grade waiting along with another suprise you'll hear about in the coming weeks. I don't want to jinx things just yet.

Maya is Maya...we need to have a talk today since she woke up telling me of a dream she had last night...."we were at a wedding Mama! I was the bride in the pretty dress and you were the other one I got married too! We got married because we love each other and we always give each other kisses!" Hmmmm, guess I need to straighten things out a bit with her thinking there. LOL!


Thanks for checking in. I can't e mail so I wanted to thank Donna for the balloons. Maya is loving the butterflies filling the room. Karla, thanks for taking such good care of Pookie. I hope you don't mind just ONE more day.

Holly

Tuesday, September 4, 2007 12:51 AM CDT

Things continue to progress here and Maya is hoping to go home later this week on Thursday. She'll have 3 weeks of antibiotics to finish, but we can easily do that at home. We have her down to just a couple of antibiotics in addition to her regular meds so we should be good.

Maya had school this morning and was glad to see her teacher come in since she was disappointed about missing her first day of school at home. They worked on reading and math and used her "cap" collection as counters to do their math work.

Yesterday Maya got a new Hello Kitty...a brown one! She was excited "a brown one just like me!" She has been sleeping well and playing well during the day. I have to admit she is such an easy kid. She is so good at keeping herself busy and happy at the same time.

We are suppose to see the endocrine doc today to further look at these funny electrolyte issues she's had forever. The calcium issue is a bit more complicated than that, but we'll see. I don't expect it to change a darn thing to tell you the truth and most likely it doesn't really need to.

Thanks for checking in and for those of you who've sent e-cards, email, calls, etc.

Holly

Saturday, September 1, 2007 7:37 AM CDT

Sorry about yesterday. There was no internet access here all day due to computer outages with the ISP. There were so many times I went to pick up my computer....you don't realize how many times a day you actually "check in" on things.

Anyhow, things are progressing here. That's the good part about no update yesterday is that I couldn't have said that then. Today she actually woke up and started taking with the nurses and although she's already back to sleep she was quite perky for about 20 minutes so that's great. Her temps are down around 101 and lower so this is also good news. We have ID on her bug...enterococcus and can treat appropriately now so hopefully we can get out of here once we get some negative cultures.

Not much else to report. We had a few lab issues to work out yesterday just to even things out as they are more touchy when she's sick, but today's labs look better so we must have evened things out.

We did start some IV phenobarb since she doesn't seem to be absorbing her seizure meds and is having some breakthrough seizures. Hopefully this will be enough to help her through.

Thanks for continuing to check on the Mayafly. We appreciate hearing from you and your support.

Holly

Thursday, August 30, 2007 10:40 PM CDT

Not too much changed today. Maya is still running temps and sleeping most of the time. She did wake up for a few minutes here and there today to talk with us then fell back asleep so that was an improvement.

Her belly is distended this evening and she's suppose to go for an ultrasound in the morning to follow up on her x-ray from today and look at her kidneys. We are covering her with three antibiotics right now so hopefully we are on the right path.

We did give her some blood today and so extra fluids so I'm hoping this also helps her have a better day tomorrow. I'll update sometime after rounds when I know more what is going on tomorrow.

Holly

Wednesday, August 29, 2007 6:42 PM CDT

We are in club med. Maya's spiking temps and not feeling well, but hopefully we'll get on track now that we're here. We flew in this afternoon and Maya's settled in and sleeping. She's very disappointed to be missing her school open house tonight and most likely the first day of school next week. I guess we'll see on that on.

We are in room: 464 and the ph: 414-607-5064

Saturday, August 25, 2007 7:53 AM CDT

Last night was so fun! Maya had a blast seeing Sesame Street Live! and sang and danced her way through the show.

We were fortunate enough to get to meet Ernie before the show and trade in our tickets for some floor seating so we were closer to the action. Our friend Jacob was there too.

Unfortunately her tummy started acting up half way though, but she made it and had so much fun. She was very concerned that Elmo might be upset she was bringing her stuffed Big Bird so she wore red since he is a red monster. She was thrilled to find out that Abby Cadaby was in the show this year too! She loved Abby since she is a fairy and wears wings and carries a wand.

Besides she is purple and pink so she's right down Maya's alley. It was a wonderful time and as always I love doing the "normal" stuff with her.

Yesterday morning we made a detour to the hospital for an ultrasound to look further at the bump in liver enzymes and her alk phos. We also did some blood cultures while we were there since she's had a lot more output through her G and J and more pain too. Things looked ok so hopefully it is some viral thing that will pass with time.

Each day we've taken her chair out for practice. So far the only thing she's broken is my foot and I'm proud to say I can still walk on it so we are ok. It was totally not her fault since who in the world would have thought there were non-accessable bathrooms in this day and age! She's doing really well though and I see improvement every day. If you look at our last entry there is a picture of her in her new chair.

She had another awsome suprise yesterday too! Our friend Connor who also is on TPN made Maya a blanket with butterflies on it and it arrived in the mail. Maya was so excited and immediately took a nap with it.

Next week in the back to school open house, pictures, IVIG and some loose ends to tie up before school starts on the 4th.

Thanks for checking in....

Holly

Wednesday, August 22, 2007 5:53 PM CDT

Here is the picture I promised...



Maya's doing well with her new chair and we are trying to get in some daily practice time. She still has to go pretty slow and has trouble in tight spaces, but each time she takes it out to drive she does better. So far no injury to person or property so we are doing well! I'm hoping to get her to the mall where she has some more open space to work and then when school starts hopfully the adaptive PE teacher will work with her some too.

We lay low this weekend with all the RAIN and flooding we've been having around here, Monday was our weekly trip to the ped and also to pick up her chair. Now that I think about it we really didn't do anything yesterday either! We went to Menards to practice driving her chair, but that was it. That and we had a friend stop by for lunch which was nice too.

Maya's been feeling pretty good. She still has her moments, but for the most part she has times each day that she plays and doesn't just lay around on the couch. It's been so nice to see since it's been a long time since she's been this way. Today on the other hand she hasn't gotten out of bed, but she's awake and playing on and off so it's not so bad, just a slow day for her...we all deserve those once in awhile.

She's looking forward to school starting and meeting her teacher next week. School doesn't start until the 4th, but they have their open house next week along with school pictures.

I'll try to get some pictures of her with her new chair on here in the next day or two. Thanks for checking in and for those of you who've signed in the past few days, it's good to hear from you.

Holly

Friday, August 17, 2007 9:47 PM CDT

If you didn't get the chance to visit in the past couple of days check out the journal history for our visit with Auntie Jessy.

Wednesday Maya had a bone scan to check the calcium in her bones, we are still waiting on the results of this scan. Thursday we had labs and made a few changes with things as she's dealing with some bacterial overgrowth in her gut right now.

Now for the fun stuff! Today we went to the Dells! Maya got to ride the Ducks and also go on some rides with her friends. It was a fun day and she is totally worn out, but it was so worth it. It isn't often she gets a day of just fun and a chance to just be a kid all day. She loved the rides, the faster and the spinnier the better! We'd just wedge her bags with her TPN and other pumps in with her and off she went. She had a ball. The duck ride was beautiful and she loved seeing a car that could actually go into the water too.

Monday is the big day to go pick up her new power chair....should be an interesting experience!

Thanks for continuing to check on us. We'd love to hear from you in the guestbook and know you are still here on our journey with us.

Enjoy the pics!


A VIEW FROM OUR DUCK


RIDING THE DUCK


BOUNCING AWAY!


NO FEAR!


SPIN THOSE TEACUPS!

Tuesday, August 14, 2007 9:30 PM CDT

Our visit with my sister Jessy came to a close much too soon. We had such a good time visiting, shoping, playing, and just hanging out. I got to introduce her to McDreamy and the rest of Grey's Anatomy and she introduced me to the fine art of eating vegatarian (which I'm not good at since I don't eat ANY veggies). Anyhow, we had a great time. Maya loved spending time with her Auntie and was thrilled to have someone to do tattoo's with, play her fingernail game with, do her hair each morning, and introduce Hello Kitty to.





Hello Kitty has been on quite a roll. She and Maya go back and forth much of the day either arguing or discussing the finer points of how to act in public. If we happen to leave the house without her, she talks to us from home. HK has her own voice and a VERY high pitched scream. Occasionally I've been known to answer Maya or ask her "what?" and have quickly been told, "Mama! I'm not talking to you! I'm talking to Hello Kitty" Now say that with a -duh!- tone of voice and you'll get the idea!

Today hasn't been the greatest as far as how Maya's feeling. She had IVIG yesterday so I'm hoping it is the aftermath of that. She's retching and vomitting a lot and has some sores on her mouth. We increased her acyclovir in hopes of getting the sores to clear up and she's vented and getting nausea meds. We'll see what tomorrow brings. Tomorrow is her bone scan to see what her bone health looks like with all the calcium issues she's been having.

Thanks for checking in, even with my lack of updates lately.

Holly

Wednesday, August 8, 2007 10:34 PM CDT

I added a picture of Maya and Mrs Kevin to the photo page at the bottom. It was from the day he came and said goodbye to her.

Whats been going on...hmmm...

Maya's been doing really well. She's happy, pain is well controlled, she's active, she's goofy, and aside from puking once a day (ok, that and all the "accessories" she carts around with her) you'd never know she had a thing wrong with her. We are getting quick with the puke bucket because that seems to come out of nowhere so I have the stashed in every room and in the van. Once it happens though it's over, she sleeps awhile, and we move on with our day.

It's been pretty hot so we've not been out and about much. Sunday we went to Jakey's Birthday party and celebrated 5 very wonderful years of his life. Maya enjoyed herself although twice she became over stimulated and needed to leave for awhile to collect herself and fall asleep for a few minutes.

Monday was her weekly doctor appointment and her first labs of the week which all turned out well. We really haven't done anything else. She's spent many hours playing dress up in her room with all her stuffed animals which is kind of a new thing for her. I love sitting around the corner and just listening to what goes on in there. On the way to the doctor Monday she and Hello Kitty has a "who can scream 'you are naughty' louder" contest. It was very loud and semi-entertaining for the first 3-4 minutes.

Tomorrow we get to go pick up Auntie Jessy and spend a few days with her which should be fun. It's been quite awhile since we've seen her so we have lots of catching up and fun to make up for. Maya is very excited about having her Auntie around for a couple of days.

Thanks for checking in on us.

Holly

Saturday, August 4, 2007 5:31 PM CDT

RAIN...Rain...rain...it rained all day today. Not that we had plans, but it rained. Made me get the work I needed to get done finished though so I guess it was good in the long run. Maya's been playing all day and and having so much fun with her stuffed animals. I hear many voices coming from her room so I'm not sure who all is in there with her. I heard Hello Kitty and Cottonball, but can't make out the others. She's got quite the get-up on with gloves, rings, a crown, a tutu, several strands of beads and a cell phone cliped to her. Totally in her element!

Tomorrow is our buddy Jacob's birthday party/benefit so we'll be there as long as she lasts. She's looking forward to playing games and having fun. I'm hoping she feels well and it's a good day for her. I'll try to get some pictures.

The week we said goodbye to Mrs Kevin. He brought her a bunch of purple flowers and they played for awhile. Unfortunately she wasn't feeling too well that day and only lasted 15 mintues or so, but it was nice to see him. He's suppose to be moving to England soon so it will be awhile before we meet again. We'll both miss him.

Wednesday we did blood cultures which thankfully were negative and then on Friday she had a bone density scan. We should know those results next week sometime. We are compairing them with some labs to determine the state of her bones in realation to her calcium issues.

Thats it from here. Thanks for continuing to check on us.

Holly

Tuesday, July 31, 2007 9:09 PM CDT

We've been keeping busy here. Mostly fun, but some of the less important medical stuff too.

Saturday we went to see Hairspray which Maya loved. she was singing and dancing in her chair along with the movie. Sunday we had some food to donate to the shelter so we spent some time with the dogs and cats there. It's always so hard not to come home with a new friend to two when you go there. On Monday she had to go see the doctor and have labs again. Silly me forgot to put her TPN on hold so I ended up coming all the way home and having to go right back and do it all over since the labs were no good then. Labs looked ok. Her LFT's are a little high, but everything else is pretty good. She has a sore throat so we strep tested her since she had a fever a bit this weekend too, but it was negative. We had some time to kill before seeing the dentist in the afternoon so since we were already out and about I took her to Chuckie Cheese. She'd not been there before and had so much fun. We just played games for awhile and she really enjoyed "cheese burger" That is what she kept calling Chuckie. The dental appointment went well and she had no cavities or other issues. She was so excited to get to choose 3 prized AND get a tooth brush. What little things can make her happy. Personally if they gave cash prizes at the dentist I STILL wouldn't enjoy it.

That's pretty much the past few days in a nutshell. Maya's been in a great frame of mind. She's been playing lots of pretend/dress up, made a "rubber-band banjo" (I added pictures to the photo page), and taking a couple naps a day which I have to admit Mommy has joined in on as well!

Thanks for continuing to check on us, we love your messages in the guestbook.

holly

Thursday, July 26, 2007 5:48 PM CDT

There hasn't been too much going on around here. The past few days the goal has just been to keep her cool and out of the heat. We've only had to do labs every few days and haven't needed to make the trip to Milwaukee this week so it seems like a slow, lazy week. We did do the dentist, had a CT (me), ran errands, labs, and will get IVIG tomorrow at the hospital so I guess it hasn't been that slow.

Maya got some Harry Potter glasses from her nurse on Saturday and loves them. For some reason she keeps calling herself "Mrs Peter Potter" when she wears them. She would have them on 24/7 if I allowed it, but at times I insist she wears her real glasses.



Last week we did make it to the park for a short trip. She had fun looking at the water and the frogs hopping around. She really loves the outdoors and nature, I wish she had more of a chance to really enjoy it. Here's a picture from our day though.



Today the people from our apartment came over and talked about some changes they are trying to make to the threshold of our door which is really high and hard to get her wheelchair over and also to the bathroom. They are also talking about getting door assist for the outside doors as there are a few others in this building using walkers or other assistance other than Maya also and the doors to the outside are big, heavy glass ones

As I said, tomorrow is IVIG at the hospital, but hopefully we'll be home by mid afternoon. NO plans for the weekend, but I hope to find something fun for us to do at some point and get her out of the house for awhile. IF all else fails we'll do the movies or the children's museum.

We continue on with Maya's current treatment plan including her calcitonin. She is getting calcium in her TPN now so taht's a good thing and hopefully soon we'll get some scans to get a good look at her bones too. She's really doing quite well and enjoying her time at home. She's getting excited by all the school stuff that is out there and hoping to get back to school some this year too.

Thanks for checking on us.

Holly

Saturday, July 21, 2007 9:42 PM CDT

After a VERY long trip home last night we did return from Milwaukee as planned. We were in some serious traffic on the way home with a huge accident on I-94 that had all 4 lanes closed. It took nearly 6 hours to get home.

Maya's appointments went well and she is exhausted and glad to be home. We saw neurology and also the eye doctor. She also saw audiology and she's suppose to be writing me a letter so I can work on getting Maya a system that would help her with her hearing and localization as she has no hearing at all in her right ear and some loss in the left. Overall it was a good visit. We also saw endocrinology who ordered a bunch of labs and a scan to keep an eye on her bone health. Because of her issues with calcium she's at risk for osteopenia or osteoporosis.

This morning she slept in and we had a nurse so I went out rummaging. When I came home she was sitting on the couch sporting a pair of Harry Potter glasses her nurse had brought her. She wore the all day! I'll have to add some pictures because she was so cute sitting here in them.

Not too much else happening here. Once I un-bury my camera dock I'll upload my pictures and add them on. Thanks for continuing to check in on us and for all the birthday wishes. We had a nice day.

Holly

Tuesday, July 17, 2007 1:05 PM CDT

Not too much going on here. I had some pictures to put up, but I can't get things to upload so hopefully I can add those tomorrow.

Friday we went to the county fair. Maya loved all the animals and was hoping to see some giraffe's, but of course, that didn't happen. She also thought that a goat was a rabbit and a horse a cow. She knew what they were suppose to be, but felt they would be better as rabbits and cows...I could see her logic so who was I to argue! The horse had spots and the goat, big ears and lots of hair. She had fun getting her face painted and "fishing" at one of the games. Again, she was told to "fish" for a shark and when she caught it she looked at me and said, "if I should catch a shark why is it full of whales!" I think she knows more zoology than the carnival workers. "Go Diego Go!" can teach you wonders.

This weekend we had Saturday off from daily labs and then on Sunday she had a friend over to play. They had a good time even though she slept a good part of the day away. She's been needing lots of sleep, sometimes 16+ hours a day.

Monday we saw the pediatrician on the way home ran a few errands. We were at Shopko getting some things when I tossed the deoterent into her basket. She then proceeded to call out, " OH Mama! This is the stuff for your TICKLE spots!"

Today has been quiet. We had to take Pookie to the vet this morning. Maya does not like that he needs to get shots and is very "comforting" to him. Not sure he's buying the "comfort" though. We are planning to go to the movies this afternoon when she gets up from her nap. Thursday and Friday we are back in Milwaukee for appointments so unless something changes I'll try to update when we get home.

Thanks for checking in.

Holly

Thursday, July 12, 2007 9:38 PM CDT

Here is a bit of our week...



Our butterflies spread their wings!!




Time at the gardens.....




Catching up with Pookie




The tease




A PROMISE!

Saturday, July 7, 2007 7:57 PM CDT

Nana and Papa left tonight...it's always hard to see them leave, but I guess if they never left we'd not be so excited to see them come back! Basically we hung around the house except for running her labs into the hospital and going out to eat a couple of times. Maya had a good time playing with them though and we also got a lot of work done around here that should help in caring for her.

I've been sleeping with her in her little twin bed. I loved the bed since my dad had made it so it was about counter height and you didn't have to bend to work with her meds, dressing changes, etc. It was just getting too hard to transfer her from her chair to the bed and not pull on one tube or another so we went back to the regular twin and moved a second twin into her room too so when you need to be near her overnight there is room to sleep without sharing her bed. I am going to miss (or should I say my back is going to miss) having her bed up high though. We were able to salvage her headboard though which is her favorite part of the bed since it has her name on it. I don't want her room to look like a hospital room, but at the same time I need her "stuff" out for simplicity so I think we found a good balance.

Today we got an air conditioner so it's nice and cool in here. We also got a fan to blow the air toward her room and some phones that actually work. For those of you who've called recently you know what I mean. now, if I could just get things unpacked and reorganized we'll be good. I finally came up with a system for her meds/supplies in the living room I can live with. Pookie is also back with us....many thanks to Tess for keeping him company and caring for him at her house as he'd become so lonely at home. Those little things are so HUGE for us. I feel like things are finally settled in and now I have one day to "live" and then we return to Milwaukee for an appointment on Monday and again the following Friday.

Between 2 trips to Milwaukee the next two weeks and IVIG every other week we'll keep busy. We are also still doing daily labs which is another hour round trip each day to the hospital. I actually think it's been good motivation to get her up and moving each morning and it gives me another chance to pick up anything we need on the way home.

I'm hoping to post a few pictures from our visit the next few days...when I uncover the camera again.

Thanks for visiting Maya's site and I'll try to update again soon.

Holly

Friday, July 6, 2007 6:49 AM CDT

Quick update...

Trying hard to keep up with things. It's always that transition back from the hospital that is hard to get in the swing of things and keep on schedule with meds, etc. I'm getting there though and each day goes better than the one before. We have company (Nana and Papa) too so that is nice, but sometimes a little hard to focus on our routine too. Routines are highly overrated though so it's helping force me to be more flexible. Labs have been ok. Calcium is hanging out a little on the high side,but safe and decent for now. She remains on the calcitonin and it seems to be doing it's job. She's happy to be here, but very tired and very deconditioned. She still need assistance to stand and walk, but I did have her walk outside and she made it about 10 feet with help before we needed the wheelchair so I'm hoping for some gradual improvment in that area. She's suppose to start PT and OT soon so hopefully they can help. I'm having trouble adjusting to how to do things like get her in the shower and to the bathroom. Our bathroom is small and quite honestly your lucky to fit in it yourself much less you, her, and a bag of IV pumps. When it's time to move from the couch to the bed at night I spend about 20 minutes staring at her before I figure out how I'm going to get her there and get brave enough to actually try. Last night I just stuck her in her wheelchair and took her. It's hard to admit she needs that much help and not know if that is going to change or not. If she's up for more than 3-4 mintues at a time and having to actually work her muscles she starts shaking so bad she then crashes for 3-4 hours at a time. yesterday we went to the doctor in her wheelchair and by the time we got home she slept for 4 hours. The only thing she had to do the whole time was sit up and once stand to get her weight.

We drove around the other night to see fireworks. She saw one and then asked to come home to bed. She spends most of the day on the couch sleeping or when awake she looks at her books or plays with her Cabbage Patch baby. OH, she like to shoot me with foam darts too....finds it hysterical and it's wonderful to hear the belly laughs even though getting hit with a dart and having to cock the gun 100x for her so she can shoot me again is annoying. I'd do it a million times if I could keep her laughing.

Thanks for the continued support. We came home to a nice clean house, flowers, food in the fridge. Hoping to get Pookie back today. Help getting Maya showered yesterday, and my "phone" support last night...thanks!

Holly

Wednesday, July 4, 2007 8:05 PM CDT

Happy 4th! So glad we are celebrating at home.......



I wanted to share some of the Super Tube Girl pictures with you. The first one is from the day she was able to watch the Hawaiian dancers which she absolutely LOVED!



This is Super Tube Girl reading "The Lovely Bones" which continues to be her choice of literature.



Here are a few more...



Thanks for checking in....I'll try to get a regular update on later this week.

Tuesday, July 3, 2007 8:05 AM CDT

We are free!!!!!

Maya is finally getting to go home. It's been a long one this time...
29 days if you haven't been counting. She is excited. So much so she's sound asleep, LOL. I told her when she woke up and she smiled......then rolled over and went back to sleep.

It will be afternoon before we can leave with noon labs, etc. As long as we are working in that direction I'm ok with it. I still have to pack the room, the van, and figure out what type of schedule will work for us. She'll need PT and OT a few times a week and daily labs for awhile. A few more IV pumps are following us home too as we are going to continue with extra hydration and her PCA in addition to her TPN and lipids.

I'd better get moving so this can all take place. I'll update once we are settled at home.

Holly

Tuesday, June 26, 2007 9:42 AM CDT

We continue to hang out in club med. Maya is requiring extra fluids right now and close monitoring of her labs, but overall is doing better. She's getting PT everyday and school when it works out. We are still using her PCA for pain and this seems to be doing a good job keeping her comfortable.

Maya's been on the "phone" much of the time. She had an old cell phone she's been using and is so funny to listen too. She's very convincing and most people think she's on the phone when they walk in. She'll even lay it down saying fist, "hang on, the nurse needs to do 'whatever' real quick" and then pick up where she left off.

She did have another fever the other night. They don't seem to be from infection though, but more from fluid balance. When we catch up her fluids her temps and HR goes down.

Not too much else happening here. She is raising some butterflies again and has three that are going to be monarch's...her room is quite the butterfly room right now as she has them hanging from the ceiling and wall. Yesterday she even painted one for the window.

Thanks for continuing to check in. We appreciate all the notes and guestbook entries.
Holly

Saturday, June 23, 2007 8:30 AM CDT

Still hanging out here in Club Med. Maya is acting more herself and playing. She started PT yesterday and was able to stand unsupported for about 3 mintues. They are going to start working with her daily to see if we can get her back to her baseline.

Things continue to improve here on many fronts although we are waiting on her tests that were run this week to determine the cause of the sudden changes in her calcium and fluid balance on Monday. She did get another unit of blood yesterday which did help her feel better too.

Maya's still Maya. She continues to read "The Lovely Bones" and has now taken to a caluculator that she spends hours "typing" letters on. She keeps these things stashed under her pillow. When we went to make her bed yesterday we found the following: 1 copy of "the Lovely Bones", 1 "borrowed" calculator from the nurse, 1 dice, 2 copies of "There is a Hole in the Bottom of the Sea" (one hand written, one typed), a cap from her meds, and a bead. We made her bed then she made sure we replaced these items one by one.

Yesterday she received a copy of her class picture from her teacher. She has not let go of it since. She has to tell everyone who comes in the room about her picture and who everyone is. She doesn't know everyones name, but at least is consistent in the ones she's made up for them.

Thanks for checking in.

Holly

Thursday, June 21, 2007 7:12 AM CDT

Today's a much better day. Super T Girl is back in uniform and was up playing at 5am. She'd like to think she's back to 100-percent, but after an hour and then trying to get up to the comode she's back in bed and napping. The spirit is willing, but the body is weak...better, but weak.

Not sure our plan from here. She's on lots of fluids and meds plus we are doing three days worth of IVIG infusions to see if this may have been an autoimmune issue. The good thing is with the first day of IVIG her ANC is up to 1500 from 600 yesterday so it did work on her that way. She's anemic today though and I'm thinking we may end up needing to give blood again (this would be the 5th unit this admission/2weeks). Thank goodness for all the blood donors out there. Please consider giving blood, so many of our kids rely on this.

She's snuggled in right now amongst her various pillow cases of butterflies and Hello Kitty. you'd never know she was in a hospital bed if you didn't see the entire room. Her bed looks like every other little girls bed...littered with her "friends" and all her "important" stuff. (still a copy of Lovely Bones and "the hole in the bottom of the sea" under her pillow).

Thanks for continuing to walk this journey with us. The messages lift us up and as many of you caringbridge parent's know are the highlight of our day many times.

Holly

Wednesday, June 20, 2007 7:07 AM CDT

We aren't home..... I haven't updated for a few days because things got busy here and we really don't have a lot of info on why she changed so rapidly.

Basically Maya's calcium has gone up causing a number of issues and bringing it down has required taking her off TPN and constantly playing with the types of fluid mixes she is on to try to bring it down and balance things back out. She's also on a lasix drip in hopes of her getting rid of some of the extra calcium she's built up. Slowly, but surely we are making progress. She has developed hypothyroidism so we are correcting that also and I just found out we are going to try to put her back on TPN today with some changes to her recipe.

Maya did wake up and ask me yesterday if we were still going home. She was fine with my "no" and I didn't explain to her it was already Tuesday. She's pretty sleepy and has times where she is not thinking clearly, but hopefully as numbers improve so will those symptoms.

So, no home in site. Pookie has a new set of friends caring for him and seems to be doing well form what I hear. Maya misses him like crazy. To thos who've sent e-cards, cards, e-mail, called, etc Thanks so much, it really does sustain us on our journey.

Holly

Saturday, June 16, 2007 8:36 PM CDT

Random thoughts from club med on the eve of the eve of our departure!

Why did they switch from red to green slushies in the machine downstairs? I really enjoyed my red slushies. (on that same note, am I the only one who identifies slushies by color and not flavor?)

Why does the popcorn in the cafeteria smell like a wet dog today? (note: I'm eating it anyway, what's that say about me?--don't answer that!)

Should I have allowed her doctor to teach Maya all 10 verses of "There's a Hole in the Bottom of the Sea"? and why is it she feels the ned to have the sheet with the words on it in front of her to sing the song (100x/day I might add) when she can't read?

Is she really reading my book "Lovely Bones" (very good I might add!) and I just don't know it? She spends hours with it in her arms, kicked back in bed, "reading"....if she is reading it, it's highly not appropriate for an 8 year old to read! (I KNOW she isn't reading it, but....)

"Super T Girl" likes to talk in 3rd person which I find quite endearing. (so does one of her nurses--I find her endearing too)

Leaving your trash in the car, during the warmer months for 2 weeks is very poor judgement!

Scanning all Maya's meds each day...is not a time saver and really isn't making anyones life easier. :)

When I have time and energy to type a list like this........it's more than time to go home! (2 days and counting!)

As far as Super T Girl goes. She's doing well. The bleeding is stopped and things look good. We have a few weeks of antibiotics left and then we'll see where things are at that time. We are finding new ways to treat with her pain and a combination of a patch and some IV meds seems to do the trick.

Thanks for checking in...its been fun to see some names in the guestbook we haven't heard from in awhile and also from the rest of you. It's always so nice to come here and see notes and they are always so uplifting for us.

Holly

Thursday, June 14, 2007 8:48 AM CDT

Maya is going to be a free woman again! We actually got to say the H*** word today, but I'm not pressing my luck by saying too much. We are thrilled though. Yesterday she got about 4-6 inches cut off her hair and bangs cut again. She looks so much younger I think. It will be quite the change as when we get home her new glasses should be in too. This time she picked out black and pink frames. They are too cute. When I braided her hair this morning she picked up her braids and said, "where's the rest of my braid?"

Right now she's sorting her caps with a soup spoon and wearing her "Super Woman, Tube-Girl" costume she made yesterday. She has a mask across her chest with a "T" on it and a mask on her eye's. Around her neck is an isolation gown with a big "T" and "Tube Woman" printed on it. She' is too funny, not allowing anyone to address her as Maya this morning, but rather by her "real" name.

Thanks for the guestbook messages the past few days. They've been nice to open up to.

Holly

Wednesday, June 13, 2007 6:33 AM CDT

We've taken up residence in Milwaukee for the time being...hopefully that won't be too much longer. I don't have a lot of words today, but thanks for the continuing support in the guestbook, we appreciate it.

Maya's snuggled in with her butterflies this morning...still sleeping which is nice as most mornings she's up by now, but she was up late last night playing a bit and I spent some time with a friend.

Maya funny: "Sniggledoodle, I don't need servants, I have a Mama!" Hmmm, It's good to be loved!

Holly

Wednesday, June 6, 2007 6:51 PM CDT

Maya's in the hospital. She was admitted on Tuesday after her ultrasound and instead of receiving her Rutuxin spent the day in the ER. Last night she had an ERCP to remove some stones in her biliary ducts and she's been resting today and watching her TV. Right now is Wheel of Fortune...she likes all the numbers on the show.

Not much else to report. I'll update if something changes.

Holly

Saturday, June 2, 2007 8:06 PM CDT

Our week went ok. Maya was actually doing pretty well and enjoyed being back home with her kitty. Pookie was glad to have us home as well.



Maya and Pookie love to snuggle when she goes to bed at night. they watch a movie then he moves to the foot of the bed and she goes to sleep. It's funny how they both have thier little routine. In the morning, he always gets up and stares at her until she gets out of bed since her bed is his daytime perch.

On Thursday after seeing Dr Brumm we stopped by the international gardens at Riverside Park. Maya enjoyed seeing the flowers and there were fuzzy little purple ones she loved. We sat by the water for a few minutes and watched "her" Mississippi too. In all she only lasted about 15-20 mintues, but we loved every minute of it.







Friday we had to have labs redrawn to make sure things were improving and not continuing to change the wrong direction. It looks like there are still some issues, but she was feeling ok at the time. Today has been a different story. Lots of nausea and pain. She looked at me when I put her to bed and said..."I throwed up 7 times today Mama". I wasn't aware she was keeping track since she pretty much only woke up when she was throwing up and slept the rest of the afternoon. We'll see what tomorrow brings. We will head to Milwaukee tomorrow and hopefully will be back by Tuesday. She will see neurology and also get her Rutuxin while we are there. Depending what things look like with her labs I'm guessing we'll go from there.

Holly

Tuesday, May 29, 2007 8:33 PM CDT

In case i don't write for few days.....WE ARE HOME!


UPDATE!! UPDATE!! HIJACKED PAGE!!

ok, it's me, Maya. My mom wasn't being fiar with just a "We are home" entry. I mean she's the first to complain when someone just writes a sentence and then there she does it. That silly mama! I have things to say (don't I always?)......
We were trying to get moving this morning, but apparently getting me ready to go home is not an easy job. Sniggledoodle must have had to come in and talk to Mama Five hundred, thousand, million times. Then she kept trying to make him work harder by changing things on him and making him get everything just right. He's pretty awesome, I think he could have handled it just fine on his own. I got to say "boo!" and call him Sniggledoodle lots of times this morning so I was very happy. He can always make me laugh even when I feel really bad. (ok, there was that one time last week he said he was going to poke my nose to make me laugh and I said, "poke your own nose and get back to work", but I was really sick so that doesn't count). I had a nurse who took reallly good care of me and helped Mama figure out the best time to leave and worked really hard to keep things on schedule today even with a new med thrown in the mix. She did really good and spacing my tubie meds too so my belly didn't hurt at all...thanks! Actually all my nurses took good care of me. I really like the time they take to do things the best way for me and to make me feel good even when things aren't perfect. They are fun too and play with me and let me help. I like to hold my bags when they drain them and keep the caps too. I also have to keep the little square on the tegaderm with my emla every morning. (it doubles as a phone when silly Mama forgets to bring one). At the hopistal I get an x-ray of my cat, Lil' Pook. I even got to bring it home! I had lots of friends in my bed...Pookie (he takes a bottle), Boo!, Huggy, Pluto, Panda, and Lil' Pook. During the day when I felt like playing I sorted beads from a bucket into little ketchup cups with a soup spoon. I'm silly that way when I play. I could (and do) do this for hours. I had school too. In fact this morning while mama had to pack things and make the L-O-N-G journey to the van to take things out and then back to the pharmacy TWICE to get things filled I got to do school one last time. Miss Teresa came and read with me and did some math. I had to show her my map....on one side my map is of America (and Canada) and the other side is the whole wide world. I told my Mama that I needed to hold the map on the way home so I could tell her how to get there. It was a great plan since I know how to use maps from watching all that Dora........too bad I slept all the way home. It seems the way my Mama took home didn't have any bathrooms to stop at because she didn't stop the whole way home and I had to RUN to the bathroom fast, fast when we got home. My mama is pretty smart, but I'm smarter so she reallly needs me on these trips to do things right...I'll have to watch her closer next time, it was a close call! When I got home I decided it hadn't watched enough continuous TV programing over the past two weeks and wasn't happy when mama told me NO TV! I decided to lay on the couch and pout for awhile, but she didn't notice so I think maybe there is something wrong with her...I'm usually better at this kind of stuff. I gave up and just layed there until bedtime telling her stories about how Pookie is from China and I am from India. Pookie and I had an argument then because he told me he was from Wisconsin and he is very, very wrong. It went something like this, "Pookie, you are from China...I am from India....What Pookie? you are not from China, you are from Wisconsin? Pookie you are wrong..." There was more that that, you get the idea...I'm in charge around here and Pookie better not talk back to me! Pookie did meow a lot and he started to botherin me so I told Mama to feed him so he would leave me alone. She thought that was a good idea since he was meowing at her too. Well, I'm off to bed...I'm not sure if I'll sleep tonight, I have this little trick I play on my Mama after we are in the hopistal. I get these big wet eyes and look all sad to see if she'll sleep with me, when she says no I just stay up all night and sing and talk. It is a good trick to play on the silly Mama (I use to call her Crazy Mama, but we decided that it isn't nice to call someone Crazy so now I just say silly--I still tell her she's a crazy driver though!)

Thank you friends for all you messages and cards at the hopistal and thank you to all my nurses for taking such good care of me and making me feel special.

Maya.......

Monday, May 28, 2007 7:46 AM CDT

HOME tomorrow! Unfortunately due to the complexity of her discharge and the fact she needs a med sarted that we've not used before we are going to sit tight today and leave tomorrow. It just completes our "A Year of Hospital Holiday's" Let's see, Thanksgiving, Christmas, New Years, Easter, Memorial Day....does that mean we'll only be home until the 4th of July??? LOL!

Right now Maya's laying in bed with her frogs having a lively conversation with them. Their names are Boo! and Huggy. She is talking into her "phone" which is actually as scrap of paper off the back of a tegaderm. Maya can find a way to entertain herself no matter where she is.

I can't wait to get out of here and home. Although we've only been here 10 days, we've been in Milwaukee for 2 weeks. Next week we'll be back to our weekly routine of coming for her Rutuximab infusions, but that won't seem like much considering we'll be HOME most of the time. She's also due for IVIG next week so it will be a busy one. I need to get out once we get home and order her new glasses. When we went to the eye doctor a couple of weeks ago her prescription has changed drastically so it will be good to see if this makes a difference for her.

Thanks for checking in on us!

holly

Saturday, May 26, 2007 10:31 AM CDT

Maya slept really well last night and is doing well as we wean her back off the PCA and other pain medication. She still has a pretty complicated rotation of meds...not hard, but you have to keep switching this and that to keep things in the right lumen at the right time. She's still really tender around her line site and has some belly pain too so we are going to wait until next week to go home. There are some trends in her labs that we need to see go the other direction or at least quit going up without reason before we can do this. She'll also need her Rutuxin infusion or else we are going to go home and then turn around and come back the next day....that is NOT something I want to do at all.

She did sit up and sort beads for quite awhile yesterday. She has all these little cups from the cafeteria that are for ketchup and she uses a spoon to dig through her bead bucket and find the ones she's looking for then moves them with her spoon to the container........basically she's her own occupational therapist! She also got up yesterday for the first time and helped make her bed. That's one of her favorite rituals when we are in the hospital......actually everywhere..she loves to make beds.

The hospital's computer system won't allow me to use photobucket so I'm going to wait to post the pictures from her book when we get home. I wanted to do it and put the words witht he pictures and I need photobucket to do it.

Thanks for continuing to check on us and offer your support and encouragement.

Holly

Friday, May 25, 2007 8:27 AM CDT

Maya's off the oxygen and doing well. We are going to work at weaning her PCA and basal rate again today as it didn't go well yesterday and she's back to where she was immediately post op. She's sitting up and watching TV this morning so hopefully that's a sign today will be a better day.

There was some "whispering" of going home on Saturday as she's stable and they need the beds. There are a few other things we'd like to work through first, but if we need to go we'll do these antibiotics at home. She'll be on them after discharge anyway as she's got a couple weeks worth to do.

Holly

Wednesday, May 23, 2007 3:09 PM CDT

Today's been an improved day. We tried to take her off her oxygen, but she is still needing some blow by at times. She is usually an excellent "satter" at 99-100 and has d off today and still has her PCA and basal for pain, but doing well.

She just had a bath, bed change, creams, etc and is now with the art lady making beads from clay. Actually she's making the clay now and then is going to make the beads. She had school this morning too and was able to listen to a story.

Her temp is starting to go up today and so is her heart rate. Her new line is growing bacteria so we wait to see if it will clear or not.

I updated the bottom of the page with contact info if you need it. I didn't realize I hadn't done that yet. I'll guessing the people in that room appreciate your calls though, LOL!

Thanks for checking in....

Holly

Tuesday, May 22, 2007 10:30 PM CDT

We are out of the PICU and back on IICU. Maya's glad to be back with people she knows in a "bedroom" that is familiar.

She is short a gall bladder and is sporting a new line since we left here, but is improving. Still on oxygen, but her vitals all look good, some low grade temps up to the low 100's, but nothing exciting (just how we like it). We still have 14 days of antibiotics and some changes to make to her care, but there is time for that as I don't anticipate going anywhere too soon.

Mostly she slept today....slept, too pain meds, slept some more. She was awake long enough to tell me "it would NOT be ok" (when she was in pain and I was soothing her with the stupid words, "it'll be ok"--I never realized how that sounds when you are in pain). She's still sweet and polite to everyone else which is more than I could ask for since I know I wouldn't be.

I did get Maya's pictures from her book sent to me by her awesome adaptive tech teacher from school so I will post those sometime tomorrow with her story again.

Thanks for all the great notes of encouragement we really do appreciate them.

Holly

Monday, May 21, 2007 7:13 PM CDT

Maya's out of surgery and in a different room. She was moved to the PICU tonight and hopefully will go back to IICU tomorrow. She did well and the surgeon said it was a good thing we went ahead and took this out now. From the sounds of it her Gall Bladder was very big and very full of a lot of sludge. She also had a new CVL placed although there is some concern this could be infected again from the surgery, but hopefully will be cleared with all the antibiotics she is on...I guess we'll see.

Not much else to report....Thanks for checking in.

Holly

Sunday, May 20, 2007 9:08 PM CDT

Today has been full of change. Maya's pain gradually increased as the day went on. We are to the point she's on dilaudid and they are hoping to get pain service up here to start a PCA soon. Maya had a CT of her belly this morning and the "thing" in her abdomen is her Gall Bladder. It is actually so inflamed you can see it when you look at her belly from the outside. The plan is to take it out tomorrow and hopefully that will take care of her pain issues or at least greatly improve them. They are going to need to do an open surgery so I'm not sure how she'll be post op, but we are planning on trying a PCA post op this time to help with pain.

Maya's slept most of the day except for when she is needing pain meds. She did wake up for about 5 minutes and put all her "stuff" in a zip lock. She's sleeping with two zip locks clutched in her hands. She's always up to something. The "bag" contents include, a syringe cap, a tattoo, 2 stickers, 5 Barbie post cards, a very small stuffed kitty, a pen, two bandaid wrappers, and a VERY tiny bottle of Barbie suntan lotion.

That's it for now, I'll update tomorrow post op or if something changes before then.

Holly

Saturday, May 19, 2007 6:44 PM CDT

Maya's cultures are positive so she's on a number of antibiotics and getting some extra fluids. We don't have ID on which bugs yet, but hopefully will in a day or two. She received a unit of blood today and is on oxygen still, but only half of what she needed last night. When she's awake she complains of pain, but is able to talk and acts like herself. Most of the time she's just asleep though and her body really needs that right now. We've kept it quiet in here today and we've both taken a few naps. Her temps have remained ok today so I'm guessing we are on the right antibiotics and it is just a matter of time for her to perk up.

She woke up about 3 times today...once to tell me I'm smart, once to tell me she loved me, and once to tell me to......."GET OFF THE BED!". She also sang a song to her nurse, but we aren't sure she was actually awake for that one.

They are doing labs every 6 hours right now and hopefully things are headed back to normal there. We are getting ready to hook up her g-tube to suction to see if that helps her belly pain any and she's getting pain meds every few hours too.

I'll update again tomorrow or if something changes. Thanks for checking in and as always we love hearing from you....thanks for the notes.

Holly

Friday, May 18, 2007 2:50 PM CDT

Sorry for the lack of updates! Our wonderful weekend turned into a crazy week and ended with us back with our friends on 4-west!

The weekend was nice, Maya and I had a good time on Sunday and enjoyed our day together. Monday she went in for her IVIG at Skemp and had the chance to visit with her nurses and pediatrician. We left on Tuesday for MIlwaukee for her Wednesday Rutuxin and then she saw the neurologist, opthomalogist, and the surgery docs yesterday. Basically all that went well, we made some changes and her eyes need a totally different prescription, but things went well. She also had her j-tube switched over to a button and for some reason tolerates this, but not a button in her G. We are just using a reggular tube for that one.

Well, that brings us to this morning....actually yesterday she ran a temp so we did cultures, etc, but she seemed fairly good. This morning she had a lot of belly pain and a temp of 105 so I brought her into the ER (thank goodness we stayed in Milwaukee last night). So, we are back up at our second home and waiting to see what labs show as far as if this is her line, gut, or what...

I'll update tomorrow or this evening if something changes.

Holly

Friday, May 11, 2007 10:21 AM CDT

By popular demand....here is Maya's young author's story.

She wrote this all herself with her co-writer program.

"Meet the Author....
maya lives at her house with her momma and her cat Pookie. She is 8 years old. She likes to play games. She likes to drink water. her favorite color is purple."

THE BUTTERFLY HOUSE
written and illustrated by Maya Owens

I dedicate this book to my family because they are special.

Once upon a time a butterfly went to a butterfly house. They flew high in the butterfly house. She saw lots of butterflies. The butterfly is so happy. She played ball with the butterlies. The butterflies went outside to play. The butterflies saw flowers. The butterflies are going in the butterflies' house. The butterflies lived happily ever after.


I wish I could scan the pictures...they make the story. Each sentence has an picture.



Maya's having some fatigue issues this week and some increased pain. I'm hoping it is still from our week visiting with Nana last week. If you let her start slow in the morning she does better. Hopefully this will continue to improve. Monday is IVIG, Tuesday to Thursday we are in Milwaukee.

Holly

Wednesday, May 9, 2007 8:34 PM CDT

One thing I learned today is......when you write the word "NOT" in all caps (as per Maya). You really mean it and can say it really loud each time you read a sign to your mom. Just because I like to peak and unwrap/rewrap Christmas gifts....and just because I might try to trick her into telling me what a gift is....and just because I might snoop around when she's not looking doesn't mean I was going to peak this time! She and her speech therapist have it out for me. I am "NOT" to touch, peak, ask questions, go near, or do anything else that might lead me to the answer to this mystery. What they didn't count on is all I have to do is wake up tomorrow and tell her it IS Mother's Day and she'd let me have it! But, I won't....or will I????? (No I won't...I do like surprises, I just like to tease her)

What else is going on here other than my daughter taunting me with gifts I can't have? Yesterday was her Rutuxin infusion which went well and we'll go back to Milwaukee next week for #2. She also has some appointments with optho, neuro, and surgery. We did get some outside time on Monday which was nice after a quiet weekend of not feeling well. She had picked out a "Saturn" ball with her last batch of dimes and had a ball playing catch....or rather "throw and let Mom chase it all over"



It really was fun and she had a blast playing outside. Hopefully we'll get some more good outside days in this spring. Tomorrow we are off to the doctor. Her WBC's were low along with her neutrophils on Tuesday so it will be interesting to see what happens. She is on G-CSF to help boost her counts so I'm not sure why she was so low. Her ANC was in the 600's.

Thanks for continuing to check in on us...

Holly

Friday, May 4, 2007 9:00 PM CDT

We spent a wonderful couple of days with Nana and Papa. Maya had a great time visiting and playing with both of them and we were sad to see them go today. She really enjoyed sharing her "Butterfly Story" at the Young Author night at her school too. This is a story Maya wrote by herself on the computer and she's very proud. It was fun to read the other stories kids in her class had written too. Maya got to show them "her" Mississippi River as we took a walk one morning. We also went to look at the river and one of the dams along with watching the fisherman which she also enjoyed.



Maya's labs looked ok this week. Monday her LFT's were fairly elevated, but they started to come down on Thursday so hopefully that's the trend. Tuesday we have to go to Milwaukee for a skin biopsy and also her first infusion of Rutuximab. This will be in addition to our normal routine so we'll be busy.

No plans for the weekend here. Maya's not felt too well today so we'll lay low and give Maya a chance to rest up for next week.

Maya funny: Today we went to some garage sales before Nana left. I had gotten a glider rocker for her room and we were putting it in the van when she commented, "There are no wheels on that chair, how will I move?" I tried to explain it was a rocking chair, NOT her wheelchair, but she had it in her mind that this was her new wheelchair.

She also got this voice morphing microphone and used it to talk-annoy me periodically today. Well, I went through the drive-thru at Burger King and they said, "can I help you?" She told me..."that boy sounds like me!" and proceeded to say, "can I help you?' into the morphing microphone and I have to admit....I couldn't tell the difference!

Holly

Saturday, April 28, 2007 8:10 AM CDT

I thought I'd update althought here is nothing very exciting happening here. Maya had a pretty good week. She fatigues easily which seems to either set off her pain or her ability to cope with it. Either way we've tried to pace things and for the most part have been able to keep her comfortable with minimal medication intervention and alos get her back to some of her normal life routine. In the morning's she's been doing speech therapy 3x/wk with her therapist from school. She likes this and is really doing a nice job. Once a week her adaptive tech teacher comes out and they work on the computer. Right now she is writing a book for the young author's thing they are having next week. It's called, "Butterflies in the House". She's doing a nice job using co-writer which is a computer program that helps in the writing and hopefully prevents some of her fatigue and frustration. She also see's Mrs Kevin. This is when it is most noticeable that she is fatiguing. Within an hour of his doing school you can see her start to do poorly and not retain or recall much of what she can typically do. We've tried limiting the time and changing the time of day and it just depends. She's gotten at least a couple of days in this week and done well. I'm trying to make up the difference when I see a moment that she is doing well and we work on math or science. She also uses her computer a lot to do some of the programs the school has sent out. Yesterday the nurse was here in the morning and I was able to go out garage saleing. I found a house selling lots of educational toys/books. One thing I found was letter tiles and when I came home I was in the other room and Maya had found them and used them to spell the names of "people I love". It is fun to see her taking what she knows and using it. She likes words and taking letters to create them. I'm thinking this year in addition to raising out butterflies we'll try a few other things. We looked through the catalog and Maya wants to try the tadpole to a frog and the ladybugs. She learned so much with the butterflies it will be fun to do some other creatures.

We are planning on just enjoying the weekend. The weather should be nice and although tomorrow is in the 80's and we don't have our cooling vest yet hopefully we'll get outside some both days. She's been wanting to go down to the river and watch the water/boats. I thought maybe tomorrow would be a good day since it is always cooler down there. She's dubed it "MY MISSISSIPPI". When we go she says she could just sit there "forever" and look at it. I'm not sure her fascination with it, but she enjoys it and it's something she can do so we go. She's also excited to go to the river "where the sand is" (the beach). She can't go in the water, but she likes to watch Devin swim and play in the sand. That is of course if the sand doesn't touch her. Well, yesterday I found her a pair of pull on rain boots for the beach. This way the sand can't touch her feet as she makes her way to the place we are sitting! She's so funny.

I hope everyone has a good weekend. Hopefully we have some fun and I'll have pictures to post sometime. Medically this week we just have a pediatrician appointment and labs twice. Nana and Papa will be here most of the week though so Maya's very excited. IVIG went well this past week so we are free from that for another 3 weeks.

Thanks for checking on us. Please leave a note of you haven't in awhile we love to hear who's checking in.

Holly

Tuesday, April 24, 2007 8:33 PM CDT

We won't be going to Milwaukee on Wednesday. Instead she'll get her IVIG on Thursday and then start the other infusions in two weeks. Things are pretty busy around here so this will work out better. Next week we are having a visit from Nana and Papa so that also played into our decision. We are looking forward to a fun week visiting next week and then we'll resume our plans for this next endeavor.

Maya has had a few pretty good days. Yesterday we went to the doctor and had labs. Things looked pretty good as far as they go and we'll re-check things on Thursday when she gets her IVIG.

Today she was able to talk to her friends at school on the webcam and also had speech and school with Mrs Kevin. She gets tired fairly quickly so she took a nap after working with Kevin, but was happy to be back in the swing of things. I've been working on her "young author" book with her too which is a project the kids do each spring.

Thanks for continuing to follow our journey. We love hearing from you in the guestbook!
Holly

Sunday, April 22, 2007 9:47 AM CDT

Wow! Finally beautiful spring weather. This weekend Karla and I had a rummage sale so I sat in the sun and got my first sunburn of the year. Other than my head being burn I have to admit I liked it. It's nice to see the sun again and feel the warmth of the sun. (can you tell I don't like winter).

Maya went to respite Friday night and on Saturday she had a great time painting the sidewalk, getting her nails done, dictating how everyone was to play Princess Monopoly, and hanging out without mom right there. I admit I enjoyed the uninterrupted sleep and not having to drag her with me to the rummage sale and running errands. She's able to go there once a month and is treated like a princess. No wonder she looks forward to it so much.

Maya's been feeling a bit better each day and is needing less and less medication to get through the day. Whatever was going on her with pain seems to be letting up and giving her a break some. This morning she's been playful and is enjoying sorting her toys. hopefully we can get out this afternoon for a little bit and enjoy the spring weather. It always seems so quickly that summer comes and she's again not able to get outside much.

Thanks for continuing to check on on. We have a busy week ahead with a trip to Milwaukee for her infusion and another doctor appointment on Monday.

Holly

Thursday, April 19, 2007 4:46 PM CDT

Well, I finally got her Easter pictures up here..what few I took since it was so cold she couldn't wear her dress outside. I actually just put her dress on her, took some pictures, then changed her again. OH well....at least she's smiling.

The past few days she's done speech therapy and done pretty well although afterwards she is just exhausted. She perks again awhile later and then it is that up and down the rest of the day. Yesterday we went in for her class picture and she was really not feeling like going, but since each year she is so excited with her picture and shows everyone her friends then turns to me and says, "so where am I?" I figured it would be good if she was in it this year since we are actually home. She also got to see her teachers and friends so it was really nice and good for her too. Today we went to the clinic for labs and then she was able to rest before working with her adaptive tech teacher on the computer (she's writing a book!)

Overall, she still feels cruddy much of the time, but has her good moments too. It is just going to take time and maybe we just aren't going to get back to where we were several months ago. Only time will tell.

Thanks for checking in on us.

Holly

Tuesday, April 17, 2007 12:27 AM CDT

I didn't update yesterday since it was not nearly as good of a day as the past few had been. Sunday was an ok day, but not great, yesterday was not good at all, but today is somewhat better again and she's at least able to sit up and play some and is currently doing a little bit of computer school with Mrs Kevin. She's doing a nice job and has retained a lot of where she was in her Edmark (reading) lessons.

Next week we go to Children's on Wednesday to start her Rituximab infusions. It will be a long day with eight hours of driving, but hopefully it will go well and we'll only need to do it for four weeks. The goal is to hopefully change her immune system to help some of the autoimmune issues she's having. Only time will tell.

Not much more exciting here. We spend most of our times with meds and Maya resting. She is still getting pain meds quite a bit and when we try to wean them we see she still needs them. I sometimes forget she is just 3 weeks post op (not even).

Thanks for checking in......will update soon.

Holly

Saturday, April 14, 2007 10:07 PM CDT

Wow! The turn around in Maya this past couple days was amazing! She is so much more "Maya" and giggling about everything. It's been so much fun seeing her personality come back and her feeling so much better. She was able to do some school Friday with both the speech therapist and also her computer teacher. It was nice seeing her participating in things again.

Her J is healing nicely and not draining so much. I've been able to go to once a day dressing changes and don't need to use the special dressing anymore, just gauze. We are still venting both the G and J as her motility hasn't gotten back to where it needs to be and even meds are a challenge. If you don't go really slow she starts retching and anything over 5cc sets her off so the day is fairly slow going. She remains on vanco for her last infection and I'm not sure how many days are left on this, but we are running it off pumps this time and it really isn't too big of a deal and still leaves us time for her other IV meds. We're settled in quite comfortable and not so patiently waiting for spring. Maya was a bit confused on the whole spring thing with the snow we saw this week.

Pookie is enjoying our being home and has his whole little pattern of what he does. He starts the morning nipping at me and walking all over me in bed so he can eat. After eating he gets into Maya's be and stares at both of us until we open the curtians for him to bird watch. He sleeps the rest of the morning and then in the afternoon he comes out on the couch with Maya for a good pettting and a nap with her. He then goes to bed with her at night until she's asleep and then plays and begs for treats until I go to bed after her last med at 1:30 and then he tucks himself in with me until 6 the next morning when the whole thing starts back over. Maya is so amused by his predictability.

Thanks for checking on us. We've loved hearing from you all.

Holly

Wednesday, April 11, 2007 9:37 AM CDT

Maya and I are still trying to recover from this virus..it's not a quick process, that's for sure.

Yesterday Maya played Princess Monopoly so that's improvement. She really hasn't played anything since we came home except for sorting her beads while laying on the couch. I can see her improving daily though and I have to keep reminding myself it's only been a couple weeks since she had her J tube placed. She's not having any pain at that site so that's good. She is having tummy pain so we are working on figuring that out. It's really not anything new since this started before her last admission.

Tomorrow we go back to the clinic for labs and some additional labs needed for the infusion we are considering starting. Hopefully she'll be up to doing school too,..at least for a little bit anyway.

By the way.....SNOW! Yes, we woke up to snow this morning. makes it hard to believe that it is amost Mid-April. Maya thinks it's pretty neat though. It is suppose to be fairly short lived and gone by next week and back in the 60's. We'll see.

Holly

Monday, April 9, 2007 2:59 PM CDT

I just typed a message then lost it....I reallly hate that.

Thinks are ok here. I have some respiratory virus, Maya seems to be catching it too. We went to the clinic today for labs and to see the pediatrician and all was well. It really wears Maya out to do even little things like that, once home and comfortable laying on the couch again she perks up some and will play quietly or watch TV inbetween naps. It's been quiet here which I think is the best thing for her right now.

Easter was nice. She looked for eggs for a bit and colored a couple of eggs too before needing to lay down again. She had a great time and was thrilled to get her basket and watch Pookie play with his new "Easter Mice". they aren't anything special, but have catnip in them so he loves them! Such a funny little guy. Right now he curled up with her on the couch, he's such a good pal to her and it's nice she can enjoy him as he use to spend more time in the other room sleeping then with her.

No plans this week. I need to recovery from this virus and she is still recovering from her surgery so we'll lay low and rest. Spring is around the corner (I hope--it's suppose to snow tomorrow) and we need to be ready for some park time again.

Thanks for checking in.

Holly

Friday, April 6, 2007 10:41 PM CDT

HOME! It's not as great as it's cracked up to be. Acutally we are so thrilled to be here and with Pookie as well, but today was not the greatest of days. We had to go to the ER at Mayo to have her line fixed and I really wish we'd just made the trip back to Milwaukee. I'll spare you the details.

Maya's having more retching, she hasn't done this in awhile and also her pain continues so we are dealing with that. She basically has gone from couch to bed and back again. Loving her kitty up though and happy to be here. She always makes me laugh and tries so hard to be brave.

I did want to say we are so thankful for the wonderful team of nurses we had while we were at Children's and how much that means to us. Your kindnesses were much appreciated and made our time bearable and I know Maya appreciates you all too. Thanks guys for everything we are truely blessed with a team who cares for Maya above and beyond...this does my Mommy heart well.

Thanks to everyone else for all the help and support. I'm not naming names as I'll forget someone and feel bad later, but know your all appreciated....To this mornings Easter Bunnies, thanks, sorry we weren't up to company.

New Pics on photo page.

holly

Wednesday, April 4, 2007 9:35 PM CDT

Sorry for the delay once again. Actually we've not had much happen and are dealing with many of the same problems (pain, infection, etc). They are gradually improving and.......DRUMROLL PLEASE!! We are heading home tomorrow! I shouldn't even type this since she tends to do something funny during the night before discharge so she doesn't get to come home, but since she's got to come back next Tuesday I figure we can at least give it a good try. She's got 3 weeks of Vanco left once we get home and on Tuesday we'll start a new infusion that will bring us back here every week for the next month. Hopefully it will help with her anemia though and that will be great. She did get her IVIG today so we are good there for the next three weeks.

Maya is so ready to go home. Today she asked me when and when I said I didn't know she immediately bowed her head, folded her hands and prayed, "Jesus, only you can get me back home to my compartment and my kitty. The doctor's don't know what to do to me anymore." That basically says it all.

WE did do school today with Miss Teresa her teacher here and also started a unit on the presidents which she's enjoying. I was able to visit with a friend who's son is also here today and that was really nice...someday we'll visit outside of the hospital, but until then I always enjoy our visits.

Thanks for checking in, we love the messages and lean on all the support everyone gives us.

Holly

Sunday, April 1, 2007 9:10 PM CDT

I didn't realize I hadn't updated since Friday. This weekend was pretty low key as Maya had to recover from Thurday. We used morphine around the clock and that seemed to really help. I can tell she's ready to wean back on that to PRN as today was really good pain wise. She got out of bed and blew bubbles today as her sats were a bit low and we needed to get her lungs expanding and prevent any complications there. Her tube looks good and we changed her from a button to a regular tube today with her G also as it is so much more comfortable for her. She's ok with whatever we decide although the other day she felt around on her belly and said, "there sure are a lot of tubes in me!"

The real news here is her line is growing bacteria again, most likely stired up by the surgery so we are going to be here until Tuesday or Wednesday. I guess backing things up by just a day isn't too bad. Hopefully ID will come in tomorrow and give us a plan as far as length of treatment so we can move on. She's not had a temp since earlier today so I think we are well on our way to improvement.

Thanks for checking in........

Holly

Friday, March 30, 2007 8:32 AM CDT

Maya's J tube placement went well. They couldn't put in a button so we'll have to come back for that. She's on lovenox for her blood clotting so I'm not sure if that had to do with it or not, but we're set with the new tube and although we are dealing with the pain of that now, I'm hoping by this afternoon maybe she'll want to be awake a bit more. At least there are no more tubes in the wrong place and that's a good thing.

We are hoping for a Monday discharge, Tuesday is our backup day as sometimes discharge takes awhile with all her home medical needs. I think we should be on target if nothing "exciting" happens this weeked.

Maya funny: When she was waiting to get her new tube she was performing the "Maya Show" She layed there with her feet behind her head asking, "can you do this? can you do this?" Flexability is obviously not an issue!

Holly

Wednesday, March 28, 2007 12:06 AM CDT

Oooops! I didn't realize I hadn't updated since Sunday! Maya is doing well. She has her moments when we have to deal with pain, pain meds, and all the stuff that goes with that, but mostly she's doing well.

We are still waiting on ID as to where we go with her line from here and tomorrow she'll have a J-tube placed. It's time to go to seperate tubes and I'm looking forward to this making things easier. My understanding is the vent better and the biggest thing is they stay where they need to be and don't end up in her tummy all the time. We will miss all our radiology friends as hopefully we'll be able to stear clear of there now that the line doesn't need replaced several times a month.

Maya's been busy crafting and playing. She's decorating boxes right now, beading, adn doing school each day with the teacher. Yesterday she spent lots of time on the computer doing work and learning about how a seed becomes a flower. She quickly tried to turn my attention to the planet websites so we ended up doing more planet stuff then anything. She also made an Easter bonnet out of a plate and lots of ribbons.

Thanks for continueing to check on us and leave messages. Maya's enjoyed the messages and her e-cards. She's also loved having her web cam to talk with the friends this visit too.

Holly

Sunday, March 25, 2007 10:12 PM CDT

We had a good weekend here. It was nice to not have to think too much about the plans of the day or how many times we'd be leaving the floor for this and that. Maya still is needing pain meds, but otherwise is doing well and playing most of the day. Several times a day she'll lay down, do hot packs and meds then after things take effect she's back to playing. As long as we can keep things at this stage I'm happy. I honestly don't think ew are going to eliminate the episodes anymore, but control is nice.

Tomorrow we'll see about her J tube and hopefully come up with a plan on that. I'm hoping her sleep study will be back soon too along with some input from the neurologist we saw a couple of weeks ago. Tests are coming back now so it will be interesting to see him try to put it all together. I don't get my hopes up too much since many times we don't really get anywhere with new paths we are trying to explore.

Maya made a card today for another little one up here. It's her birthday and Maya LOVES birthdays or any chance to celebrate! She dubbed our room the "M" room today since her nurse was Melissa, she was Maya, and I am Mama. We also had Mary visit. So...anytime someone walked in she asked their name and let them know if they could be there or not. We also washed her hair in an inovative way. I'll have to illustrate with the pictures when we get home. Let me just say we were creative!

Thanks for continuing to check in and for offering words of encouragement in the guestbook. We love hearing from you and Maya's really enjoyed the guestbook entries with messages for her (me too, but the ones to her from her teachers have made her just giggle!--I love a good giggle!)
I'll update tomorrow night after finding out the plan for the week.

Holly

Wednesday, March 21, 2007 10:27 PM CDT

UPDATE: I have nothing to really add, but wanted to let everyone know that not much has changed. She's still having episodes of pain although she's now been afebrile for 24 hours! That's a good thing! I don't expect much over the weekend, but hoping for some ideas on where we go from here on Monday.

Well, we are now in a new room. They had to move us since they are getting full up here again. We are now in 477 which is a private room on the same floor. Maya's in isolation for MRSA so we have to be alone, the other room was a semi and this way if they need it two kids can go in there.

Today wasn't such a good day. Maya started running temps again and needed blood. She's also having some belly pain again. Most of today she slept, but she did sit up and do a little painting this morning. She's working on a heart box and some little planters.

Not much else. She's loving the e-cards though. Thanks for this and all the notes in the guestbook. I read them to her a few times a day.

New contact info is on the bottom of the page.

Holly

Tuesday, March 20, 2007 6:50 PM CDT

Things are good here in club med. Maya spent much of her day making a rubber band ball and playing bouncy ball with the nurses. She did take a nap this afternoon and has had some pain, but nothing major today. This morning she did school with her teacher and talked to her friends at Viking on her web cam. She misses everyone and loves hearing her messages from the guestbook (Chris, she giggled and giggled at your message). She's also loved her e-cards and has them all hung up in her room. She also received a beautiful pink butterfly balloon from a friend today and loves it. Her name (the butterfly) is Pinky. She is friends with Cottontail, the bunny and Pipsy, the very little bunny. As you can tell, there is more Maya news and less medical...this is good.

We are starting ethanol locks tomorrow in addition to her other meds. Hopefully this will give us the best chance at clearing this line. We keep plugging forward.

Holly

Monday, March 19, 2007 7:24 AM CDT

The weekend was fairly uneventful. We are still having b/p's on the low side, but she needs blood so that could be the case there. She's also continuing to have abdominal pain, but we finally found something that seems to control it pretty well and she's been comfortable. Today starts a new week and those of you familiar with club med know that weekends aren't much of anything unless there is something big happening you just wait for Monday and let things stay fairly unchanged for the time. Today we are also drawing blood for the rest of the testing from our neuro visit two weeks ago. I'm hoping it will shed some light on a few issues....we'll see.

Yesterday Maya played beads. She loves to sort by shape then color. She did this for hours. I get spoons and containers from the cafeteria downstarts and she uses these. She also sorted rubber bands for awile and ended up making a ball and some crosses out of these and tounge depressors. We had forgotten Cottonball at home so he is in the mail and we are awaiting his arrival with great anticipation. (ok, I'm not so much into the awaiting and anticipatin thing, but Maya is).

No word on discharge yet, not sure we are at the point of discussing it at this time. I have an idea in my head, but we'll see if I'm anywere close. With her it always takes two attemps anyway as her body has it's own ideas.

Thanks for checking in.....

Holly

Saturday, March 17, 2007 7:20 PM CDT

Not much new to report. Waiting for her cultures to clear and making a few small changes here and there. Maya slept most of today and really didn't play at all. She's very into her music right now so when she was awake she was listening to that. She's still asleep now as we are getting her ready for bed (foley in, vitals, etc). Pretty exciting isn't it?

She was looking forward to St Patrick's Day...so much for that. Now I'm sure she'll move on to Easter anticipation. Nothing wrong with that. She's not feeling well enough to be funny although today when her doctor came in she only woke up for him, sat up in bed and exclaimed his name...........then she rolled over and went back to sleep. She loves her doctor and her nurses, that's for sure. they are taking good care of her and our wonderful nurse today sat with her so I could take a break too...it was nice.

Hope everyones having a good weekend, thanks for checking in.

holly

Thursday, March 15, 2007 7:11 PM CDT

Greetings from club med! Maya had kind of a tough weekend and Monday had seen the doctor and also had blood cultures drawn. Well, Tuesday she was running fevers so the plan was to go back in on Wednesday. Wednesday looked better so I was set just to follow up with labs and see the doctor, but before I took her in I got a call that she was growing yeast in one of her lumen. So, anyhow, we ended up going into LaCrosse for the first dose of anti-fungals and then flying to Milwaukee. Maya was actually doing pretty well and spent most of the flight listening to her headphones. During the night last night her pain increased and she spiked a temp of 103.3 so we drew cultures again and started antibiotics in addition to antifungals. This happened again today during the afternoon, but they thought maybe it was a reaction to one of the meds running so she was dosed with steroids IV and will continue to get these along with different meds to prevent any more issues with reactions. Because of all this we didin't start her IVIG and will do it tomorrow. She's pretty anemic so we decided to give blood tonight and then we'll hopefully have enough lines and time to get in IVIG, all the regular meds, and the three additional anti-biotics/fungals. There is a plan beyond this but we are going one step at a time and if we move to step two then we'll cross that bridge. Right now, we are trying meds. The goal is to NOT pull the line. That's option 4.

This morning she did feel well enough to talk with her school friends on the web cam and provide her daily entertainment to her caregivers. She was quieter and not feeling quite as well this afternoon. I guess that's about it for now. If you get the chance you can send free e-cards from the giftshop tab at www.chw.org . Maya would love to hear from you.

Thanks for checking in!

Holly

Sunday, March 11, 2007 9:07 PM CDT

I know, so many journals in so many few days. Tomorrow is a big day and I was going to post this in the morning, but we have to be at the doctor early and Maya's not feeling well so I'll post it tonight.

HAPPY GOTCHA DAY MAYA

March 12 is so full of memories for us. Six years ago today Maya joined me in my arms as part of my family. She was already deep in my heart where I was holding her close and just waiting to hold her in my arms. I remember every detail from that day. I remember the long drive, the hours in the airport and the anticipation as each person stepped off the plane. She was the LAST one off, the very last. It was killing me. I couldn’t talk, I could bearly walk, but I made my way to the gate to take her in my arms and hold her……FINALLY! It’s impossible to describe the emotions that flow through you at a time like that.

Since then I’ve learned so much, been blessed each day waking to her beautiful smile, her voice, her spirit. She’s changed me as a person…made me better. I feel so blessed and honored to be her mom. God chose such an awesome gift for me and I love sharing her with everyone. She has so much to teach. Never an angry day and always time for a smile and a hug. I get a lot of questions about her adoption, unlike so many that have been blessed by adoption it’s obvious to people who look that she is not of my flesh, but I still get questions. I found a quote yesterday that says it well……

Natural Child: Any child who is not artificial
Real Parent: Has a child who is not imaginary
Your own Child: Any child who is not someone else’s child
Adopted: A natural child, with a real parent, who is all my own!
--Rita Laws

I wanted to share some pictures with you from the past 6 years, some you’ve seen here before….

India 2001


Gotcha 2002



Gotcha 2003


Gotcha 2004


Gotcha 2005


Gotcha 2006

Saturday, March 10, 2007 6:27 PM CST

When does 100=10=1?

100 Dimes (hard earned I might add!)


= 10 dollars (2nd grade math lesson used here!)


=1 longed for, highly treasured My Little Pony movie!


For those of you unaware of this process. Maya's been saving dimes for this movie since January. She wanted the movie when she saw the preview last fall and everytime we went to the store she had to see if they had it yet. Since it had a February release date I decided to use this as a math lesson/life lesson. I thought by using dimes she'd see her savings grow quicker and we used this to transtion her with cathing. She use to fight cathing like nobody's buisness often taking 3-4 people to hold her down. Well, when I knew we'd come home cathing and only 1 mom to do it I struck a deal with her that IF she cooperated she'd get a dime. Either way, I told her, she'd get cathed, but if she could help by cooperating she'd earn a dime. Well, two nights of no dime and one night of a dime that later was removed since she didn't cooperate post-cath she was on track and now she actually gets in bed and asks, "are you ready to cath me now?" I figured no checker at the store was going to be thrilled when she dumped 100 dimes on their lane at the checkout so we counted the dimes and made piles of 10 so she could exchange them to me for a dollar. She was so proud as she checked out and paid "all by myself". She now wants to start saving again, only now she gets dimes for other things too. In fact she's quite the negotiator. The other night I asked for a back rub from her (she's sooooo good at them) and she told me, "ok, for a dime!" and giggled.

That's about the extent of our weekend. Maya's watching The Pony Movie again. She took a good nap today when we went to visit friends so I'm sure we're in for at least one more viewing today. Thanks for checking in. I'll update Monday after we see the doctor, hopefully she'll be feeling better by then.

Holly

Thursday, March 8, 2007 8:18 PM CST

Well, we made it home. It took awhile to make it (like an extra day!), but we're back safe and sound. Maya's glad to be home and Pookie was very happy to see us too. Maya's had a ball with her new bunny Cottonball. She tells everyone she meets how she made him at Build-a-Bear adn then tells them the entire process of making him. So......we present Cottonball.....




Tuesday night Maya had a sleep study. They were great about making sure I'd not have to shave her head in the morning just to get the electrodes out! She has a LOT of hair and overnight EEG's are not hair friendly. She's still got quite a bit of glue in there after several washings, but it was the easiest time I've had with the hair afterwards. She was also a great helper to the tech and the nurse in the sleep lab. She tried to help with everything and cooperated too.



But, when it was all said and done she basically said, "so you think I'm going to sleep now?"



Tomorrow we are back in the groove with speech therapy and school. This afternoon she had school with the adaptive tech teacher from school and they worked on some neat computer things. She's ready to get back to work although we did take the laptop and she worked on some math and reading while we were gone.

We are doctor-free until Monday. Looking forward to a relaxing weekend, hope yours is the same. Thanks for checking in on us (two updates in a row--hard to believe huh?). IF you have a minute we'd love to hear from you in the guestbook.

Holly

Wednesday, March 7, 2007 9:19 PM CST

Greetings from the Rock Hard Hotel near Club Med!!!

Actually it is just a plain hotel, but the beds are rock hard and I think the Easter Bunny has the room above us because someone up there is doing a lot of hopping around!

We've had a busy week and it's been full of info and Maya's funnies. She was doing the reverse motility thing and spilling her pills back out her g-tube and then today it ended up her tube was all the way back coiled in her tummy again. So.........new GJ and we are ready again. This one lasted just over a week so it is hardly worth it, but something we have to do. I think we are going to go ahead and put in a seperate J tube soon.

As far as the week has gone. Monday we saw ID and also endocrinology and then had labs. Tuesday was neurology, ENT, and pulmonary, labs, and then she had a sleep study last night. Today was our busiest day with nephrology, physical medicine, special needs and then we also had to do labs and several tests in radiology. We didn't get back to the Rock Hard until almost 7 and started in sleep lab at 5:45 this morning.

There was a lot of planning and testing done we we are not going to make changes until we have an idea of what everyone had to say and recommend based on each of thier results. We'll then put it all together and make a plan. The biggest thing right now is some sort of lock or flush to prevent further line infections.

On the "Maya funny" front. She was so wound this morning that she was singing through her nephrology appointment. She was singing and changing pitch with each word and just going from song to song while we were trying to talk. Occasionally she'd throw in a "Maya wistle" which is more of a squeal than a wistle. Well, we were all trying to ignore her and talk about what was going on and finally burst out laughing because it had just become so comical and she would NOT stop. Last night when her head was wrapped for the EEG I noticed how much she looked like her baby pictures. I said to her she looked like a baby again and so this morning when they removed the headwrap she said, "do I look like a mommy now?" And apparently her hearing does impact what she understand as all week instead of hotel she's been telling people we are staying at the South Pole.

Well, I need to get working on meds again so I'll stop with that. Thanks for checking in on us.

Holly

Saturday, March 3, 2007 11:49 AM CST

We are packing up. this is the first time we've gone overnight outpatient since she's needed this much stuff. I'm still trying to figure out how to fit all of this....



Into coolers in the car and then a couple of small "dorm fridges" at the Ronald McDonald House. (and that is IF they have a room). Otherwise I need to find a hotel with a fridge. That's just the stuff that's cold. Double that and that's what I need to take in medical supplies for Sunday-Wednesday. I'm so use to being inpatient and not needing to bring anything other than the pumps and tubing to get home with upon discharge! OH well, it'll all work out I'm sure. Maya and Pookie are quite entertained watching me pack. I've still got to do laundry today and right now someone has beat me to the machine so hopefully they don't have a bunch to do. We can only do it between 9am and 8pm and there is just one machine so jumping in when the time is right can be a challenge. Other than that Maya's playing picnic and Pookie is sunning himself on the bed. It's a nice lazy Saturday after the busy snowy week we've had. I can't believe on top of the two feet last weekend we got another half a foot the other night. I'm ready for winter to be over.

Medically speaking we are just waiting to see what everyone has to say this week. I know we are discussing the ethanol locks vs. vanco locks. Looks like ethanol might win out, but we'll see what happens. Maya's been having some high outputs, but extra fluids seem to keep her going and overall we are doing quite well here.

Maya funny: Maya's not been sleeping well (not the funny part!) and the other night around 2 or 3am she was up and talking so I got up to go check on her. I tripped on something and it made some noise so she calls out from her room, "could you make it a little quieter out there? I'm trying to sleep in here!".............not that she woke ME up or anything!

I'll try to update while we are gone. Thanks for checking in.

Holly

Wednesday, February 28, 2007 8:56 PM CST

Maya is still enjoying her morning meetings with her class from school. This week is Read Across America and they voted on their favorite Dr Seuss books which for Maya turned out to be Green Eggs and Ham (or as she calls it "Sam I Am" or "Goat in a Boat"). This morning she shared a picture from her Make a Wish Trip that was almost 4 years ago. It's a picture of her with the Grinch! :)



The snow is still pretty think around here, the weekend totals were around 26 inches. The view from my window is partially blocked by a drift and then another from the roof. It's actually been fun to watch it transform each day. I guess tonight we are suppose to get another snow storm. i just hope we get it and then get it over with as we head to Milwaukee on Sunday. Here's the view from my window.



Yesterday Maya's doctor and case manager from Children's came to give a presentation at our local hospital. They stopped by for a visit afterwards and Maya was in her element as she loves to entertain and have company. She was explaining her knowledge of the solar system and the planets. She's so funny sometimes. She just loves them and I have to agree. We are certainly blessed with a wonderful team of caregivers for Maya.



Her bath chair came today. They ordered the wrong size which is irritating as she will never be in the 120-165lb range that it is made for. She actually needs two sizes smaller and even if allowing for several years growth just a size bigger than that! Of course it is a bath item and not returnable so we'll make it work...not cheap either. I do think it will make her baths much easier as far as keeping lines dry and hair washing easier on both of us. The biggest thing though is her pain in the tub. She just can't sit on the floor anymore without significant pain in her legs so it'll be nice to see this help her enjoy her baths again.

Thanks for checking in. Like I said, we are off to Milwaukee again next week for several days of appointments. Hopefully we'll get a room at the Ronald McDonald House.

Holly

Sunday, February 25, 2007 4:21 PM CST

Well, we've had a very snowy weekend. We've had something like 20 inches of snow in Holmen and it is snowing as we speak. Add lots of wind to that and we have somr pretty dramatic drifts too. The view from my window is pretty neat. There is a drift that comes up about a foot from the bottom and then one down from the roof. It's pretty cool, if I thought a picture would turn out I'd take one. Needless to say I've spent time outside clearing off the van and trying to make a path through the drift from where they plowed me in. It's all good fun!

Maya on the other hand has loved it all (truthfully so have I, since I haven't had to leave and go anywhere). She spent quite awhile playing little people in the snow this morning.............



Making a "snow castle"............



and a snowman........



Because of her autonamic dysfunction and all her tubies she can't really go play in the snow so I brought the snow to her. She had lots of fun, it's not the same and sometimes when I see other kids outside playing my heart does this little achy thing, but we do our best and she's happy so I guess it's ok.

She's not feeling too well this afternoon and has been watching moves and took a pretty long nap considering she's done little to nothing today. She's on the couch with hot packs right now watching Blue's Clues and curled up with Pookie.

I changed the pictures on the photo page the other day if you haven't been there in awhile. too. Hope you are all having a wonderful and refreshing weekend. Thanks for checking in.......

Holly

Wednesday, February 21, 2007 1:28 PM CST

In case you were wondering....tea parties and calculators?? Still a daily occurance in our "compartment"



Sometimes I'm actually invited to attend the parties too! Usually I'm just happy to be allowed to watch and listen.

I'm not sure if I'd posted this, but Maya got a new backpack for her TPN. It is pink with a butterfly on it and when the wheels spin they light up! She loves it and it works great for all her pumps. Right now she's on 3 pumps most of the time and has pounds of fluids in her bag so she can't really carry them anymore.



This morning Maya had speech and then is doing school with Mrs Kevin now. She loves it and is working really hard to do what is asked of her. Every morning when she wakes up she asks if it is a school day...



Of course, the brain takes lots of energy so by the time she's done there isn't much energy left to do much except sleep or lay on the couch and listen to stories. Some days by 3 or 4 she is done for the day...



Well, that's our usual days in pictures. She's still a big fan of her cash register and her crafts too and there has been a recent revival of Barney around here. We are loving the warmer weather although snow is predicted for the weekend again.

We have so many friend right now dealing with loss or in the hospital with sick children. Please keep them all in your prayers.

Holly

Tuesday, February 20, 2007 9:24 PM CST

Sorry for the lack fo updates. This time it's been Mama that's been sick! Maya's doing pretty well. She had a bad day on Sunday and struggled to get through school this afternoon, but she was in a pretty good frame of mind, just reallly tired. She slept from 3pm this afternoon then went to bed when she woke up (does that even make sense?).

Maya's enjoyed talking with her class on the webcam. She's also writing letters to her classmates with her co-writer and sending messages back and forth with a big mac button. It's really making her feel a part of the class and her friends. She's been working really hard at her school work too and has been reading and making nice progress with her math too.

For those of you following the dime saga. Maya is up to 61 dimes! She is trying to save 100 dimes for a movie she wants. She earns them by cooperating with her cathing at night and other unexpected times she's cooperating or helping out during the day. It's fun to watch her save and count each night knowing that she has a goal in mind. When we've gone to the store she's had to look at the movie and then puts it back reminding me SHE is saving HER money to buy it. I LOVE it.

We have a busy week planned with school and speech. She also has labs again on Thursday. I didn't hear about yesterday's labs yet so I'm assuming they weren't too bad. We've been watching her WBC's bounce around since she's on the G-CSF. It doesn't really follow a pattern so we are trying to keep track of things and see if her dose needs adjusted.

Thanks for checking in I'll try to get some pictures posted tomorrow.

Holly

Thursday, February 15, 2007 8:12 AM CST

Good Morning! Maya is doing well and enjoyed her Valentine's Day. She really enjoyed receiving cards in the mail and also getting her Valentine's from her friends at school. She was very "chatty" yesterday and had to tell everyone how she was dressed for Valentine's. She was head to toe pink and heart covered.

This morning we have a nurse so she's getting her bath now so she can be ready to meet with her class in a little bit. She also has speech and school today with Kevin. What a busy girl she's become. I'm hoping with everything today she won't get too tired. We are going to make some changes in her TPN/suppliments to see if we can boost her energy level back up.

I have labs to drop off today, but she doesn't see the doctor until Monday. It's nice to not have so many appointments these past few weeks (we've been home for 3 whole weeks now!) She has two more weeks before she finishes her vanco so we'll see what happens after that. I always hold my breath as we finish up things.

Thanks for checking in and for all the comments in the guestbook, we reallly enjoy hearing from everyone.

Maya funny: Yesteday we took our van in to get a lift for her wheelchair. I hadn't told her why we were taking it in and it really bothers her when she has to leave the van anywhere (she hates having the oil changed. She wants to sit and watch so she knows they are taking care of the van.) Anyhow, she was asked what she thought they were doing that would be helpful in the back of the van and she decided it was they were putting a table in for her. Now she's decided that no, maybe a ladder as she knows it is something that will make it easier to get into the van. I love to take a peek into her mind sometime :) I have these visions of this van with a rope ladder and table in it! Hopefully she'll settle for the lift.

Holly

Tuesday, February 13, 2007 2:57 PM CST

Photo and video editing at onetruemedia.com

Sunday, February 11, 2007 11:14 AM CST

I've recently become aware that it takes a calculator to have a tea party. I'm not sure how exactly it is involved, but it looks like there is some heavy math taking place at various times during service. Usually the first big calucation takes place between the handing of the napkins and the cookie service then there are various smaller calculations before the very "big Math" that takes place just before tea is poured. Of course, being the observant mom I am I didn't notice the calculator and thought she was having a seizure as she was all hunched over and not moving except for (from what I could tell) one hand. From where I was there was a tea service tray blocking my view of the "calpolator". After calling her name it was all explained to me by the the "hostess" herself. Since then there have been 3 more parties and each involve the calculator. You have to love it.

Healthwise Maya is doing ok. She had some rough days last week, but the past couple have been decent. To add to this I want to clarify that just because I don't only write medical news here or talk about our medical life it doesn't mean I'm "use to it" or that it's necessarily better or worse. It means I'm focusing on life and who my child is. She is not her disease, she is not these tubes hooked up to her, she is Maya. She's a funny, sweet, charming child who is FULL of LIFE. It doesn't mean she isn't still carrying around a backpack full of TPN, Feedings, and countless medications. It doesn't mean that out of 24 hours in a day 18 of them don't have medications due on that hour. It means she's 8...somedays it means she is Snow White, caring for her brood of 7 (not dwarfs, but Hello Kitty, baby, snoopy, etc) and somedays she IS Sleeping Beauty, sleeping because of this nasty thing called Mito. Either way she is Maya, she's not her disease. There are other times when this disease seems to overtake our life, then that's all I write about....because some days that's all there is.

Well, the tea party continues and I need to catch some of this "conversation" she's having on video....it's too wonderful to even describe. Apparently now there is some issue between who is going to have the apple, who is getting the cookie, and who is "just going to have to have the cotton ball and shiny penny." I'll let you know how it turns out!

Thanks for checking in, sorry for my soap box. Sometimes it just has to be said.

Holly

Thursday, February 8, 2007 10:28 AM CST

Make photo slide shows at onetruemedia.com

Monday, February 5, 2007 8:15 PM CST

This weekend was so cold! Maya and I just settled in and spent some quiet time. Most mornings Maya just played quietly and we spent our afternoons on the couch watching movies and napping/snuggling.





Today was so cold that school was canceled. Of course, we had to get out bright and early to go in for her IVIG. I went out early to warm up the car, but....It wouldn't start. So after some scrambling thankfully a couple of good friends offered to get us there and back. Maya's infusion went really well and we were home by late afternoon.

Hopefully it was warm up soon so maybe we can get out a bit more. So far this was only the second time Maya was out since we came home. I actually think she likes being home so much, but I know she'd enjoy getting out and doing something once in awhile.

Thanks for continuing to check on us. Hopefully I'll get the chance to get some pictures this week of Maya's schooltime and using her computer.



Holly

Friday, February 2, 2007 9:32 PM CST

Sorry for the delay in updates, this week has flown by. Maya's had some good and some not so good days, but she's plugging along and is such a good girl helping out with her care. She's gotten to the point that cathing isn't really bothering her anymore and although it is the first thing she wants taken care of in the morning (removing it) she's tolerating it well, you could have never convinced me of this a couple weeks ago! she did really good with her pain control up until the past couple of days, but by that point we'd started feels so it is either the feeds or just where she is with things. Monday is her IVIG so I know she's on the down swing of how she's feeling, that is pretty much how it goes with her. I'm not sure how I'm going to work monday needing one lumen for IVIG and one for TPN yet her meds and her lock need to continue too. I suppose it will work out, just not sure how to squeeze it all in. She doesn't tolerate not having her TPN running all the time so that is the biggest problem. Her WBC's have been holding with the neupogen so that's doing it's job and keeping her ANC where it needs to be.

Ok, enough medical and on to the fun stuff. Maya got her school computer today. She has a webcam to see her friends and talk with them along with lots of great reading, writing, and other learning programs to work on. They are right on her level and she does awsome on the computer. We are very excited to visit with her friends next week. this weekend we are going to go through and do her Valentines as she can hardly stand it. She had me get both butterflies and Hello Kitty when I picked them out. Maya's only been out once in the past week and a half for a number of reasons, but she's just as happy staying home, playing, and doing school.

Pookie's been doing his job keeping Maya company and taking long afternoon naps with her..........


It is freezing here this weekend.........stay warm!

Holly

Monday, January 29, 2007 12:07 AM CST

Happy Monday!!

I can't believe how busy we've been and how quickly the day's pass. I actually thought I'd updated this weekend, but as you can see I didn't.

Lets see...Maya started back with speech therapy and Kevin on Thursday and Friday and did really well. She loves learning so much. Friday she also had a visit with the adaptive tech teacher to work with her computer. It is so exciting to see how much this helps her and how much more she loves to learn when we can make it available to her in a form she can use. I LOVE it.

Friday I ended up sick too so that put a serious crimp in things for a couple of days. We made it through though and all is well. Maya's had some rough times and some reallly good times. Today is one of those good times, at least so far it is. usually a good morning means a short afternoon and then she's done for the day. We had to be at the clinic bright and early this morning then to the pharmacy for meds. It's the first time we've been out since coming home.

Maya has recently discovered Snoopy and currently loves Snoopy in "This is America Charlie Brown". It has the kids going back in time and meeting people that are part of different times in our countries history such as the constitution, the Wright Bros., the building of the space station, and several others. She loves history, but is facinated with the Wright Bros. story on this movie. She's on her third viewing today.

Kevin is here today too and she's looking forward to "teaching him something". Right now they are doing MONEY! She loves money! After that I'm sure she'll most likely be done for the day and retire to the couch for the rest of the afternoon. She fades pretty fast in the afternoons.

Thanks for checking in.

holly

Wednesday, January 24, 2007 9:59 PM CST

HOME!!!!!!!!

We arrived home this evening and Maya's very glad to be here. Pookie was also very glad to see us as he's been alone for a few weeks now.

We came home with a few more meds and a change in routine so it'll take me awhile to adjust. Maya's now requiring to be cathed so we are using a catheter overnight. This does NOT make her happy, but it's necessary so I hope she adjusts. She's adjusted to her GCSF and doesn't seem to mind the shots at all. We are doing 6 weeks of antibiotics at this time so there is a lot of juggling of her meds and pumps, hopefully this will get easier with time too.

I hope to scan the one picture I have (I forgot my camera) from this stay soon. Mickey Mouse came to visit on Sunday as he was in town from Florida with the cast of the High School Musical. Maya was thrilled with the visit and has to share her picture with everyone she sees.

Tomorrow we are resuming school and speech so I'm hoping Maya wakes up eager to learn. School time is one of her favorite times of the day.

Thanks for checking and supporting us.

holly

Monday, January 22, 2007 8:27 PM CST

Well, we aren't home again today, but hoping in the next day or too to be there. She had a few tests to finish today and a new GJ tomorrow then if all looks good we'll be on our way. (ok, I know I've said that before, but for real this time, LOL). Today was an MRI, MRS, and MRA of the head and brain and a cervical spine MRI.

Maya's still Maya. Very busy and very entertaining. She loves helping all her nurses and doctors with their work, making her bed, taking the physical therapist for a walk, and teaching her teacher school each morning.

Thanks for checking in.

Holly

Saturday, January 20, 2007 6:15 PM CST

Today Maya had an u/s of the hip and an MRI of the spine. We're still waiting for results, but I'm guessing things look good. She had an abdominal CT yesterday. The line is looking good so far so hopefully this 6 weeks of treatment will do the trick.

I wish I had my camera with me because if you could see what she's done to her horse with bandaids, gauze, etc it's good for a laugh. She's been playing doctor (or mad scientist, I can't tell which).

I'm hoping to be out of here Monday if all goes well and just finish these weeks up at home. Maya and I are both ready to be free.

Holly

Thursday, January 18, 2007 9:59 PM CST

Maya's asleep for the night so I thought I'd escape for an update instead of trying to slip away tomorrow during the day. The plan in to leave her broviac alone and treat for 6 weeks with vanco and locks. We'll do a tagged WBC scan in about 5 weeks to look for a source and go from there if there is something else that needs to be done. She saw ENT today also and now has her nose packed, her response to this? "I just don't want to talk about it". She won't acknowledge it at all. HOpefully this will stop/slow the bleeding some. Too many bloody noses the past few days, it's time for them to stop.

She's had school everyday and enjoys working with her teacher here. She's not Mrs Kevin, but she likes her none the less. Today they did lots of work sheets and reading so she liked that, yesterday was all math. Maya continues to (other than the nose packing) be her happy entertaining self. If her pain gets bad she'll just lay down and ask for meds then sleep for awhile, but then play again when she's back up. Painting ceramics has been the focus of the past couple days and she loves it (for about 20 mintues). She made a really nice picture frame today.

Thanks for checking on us, sometimes you start to think your in this along, it's good to know we aren't. We'd love to hear from you. Maya loves the e-cards through the hosptial website too and would love to hear from you too.

Holly

Thursday, January 18, 2007 12:44 AM CST

Just wanted to add an update. We ended up not pulling her line yet, and therefore haven't had to address the "where to put a new line" issue. They are still talking about what we are going to do, but she's doing well so they are taking there time to decide what to do next. She is still having the pain she was dealing with on Sunday so today she had an abdominal CT.

She's been doing school with the teacher everyday, but about noon seems pretty much done for the day. She does perk up again in the late afternoon/evening again. Not sure the plan from here. She's still on antibiotics at this point and we hopefully will get some ideas today on what to do next.

Thanks for checking in.

Holly

Tuesday, January 16, 2007 6:03 PM CST

Greetings from Milwaukee! Maya was transfered last night from LaCrosse where she'd been admitted on Sunday afternoon for increased pain. We ended up with positive line cultures and after giving her IVIG yesterday were flown over here last night. Today the plan was to pull her line and place a PICC, but the PICC was not possible due to lack of accessable veins and colaterals so we are in a holding pattern at this time. There are access areas in her chest, just not for PICCS to be threaded though as it's through the shoulder area that is tight. So, anyhow, hopefully more news there tomorrow.

Today Maya slept pretty much all day, yesterday was about the same so little news to report there.

We are up on IICU in room 479. Contact info is at the bottom.

Holly

Friday, January 12, 2007 1:03 PM CST

Always something new here. Maya's labs came back from her last admission and it was found she's developed autoimmune neutropenia. She'll start G-CSF infections three times a week to treat this. Basically her body is making antibioties to this part of her white cell. Hopefully by treating this we can decrease her amount of infections. She's already on IVIG which also helps with the infections, but in a different way and for a different problem (CVID).

Yesterday we went up to Rochester and had dinner with a friend who's there with her husband for his surgery. They also have a daughter with MIto and it was good to see her and catch up. It's been over a year since we saw each other last and I really enjoy talking with her. Maya and Karla came along too so we all had a good time.

School here at home has been going well and she's continuing to progress with her reading and computer skills. She really has done well with all her school work this year and her school has been wonderful about helping to make sure she is getting the services she needs.

Maya's on a phone kick right now, she has her Tinkerbell cell phone with her at all times and "talks" on it constatly. It is so funny to listen to "my" side of the conversation and she'll even pause and say, "hang on, I have another call" then click the button and tell the "person", "I'm on the other line right now, can I call you back?" I actually learn a lot from listing to her phone conversations.

Thanks for checking in.
Holly

Thursday, January 11, 2007 11:03 AM CST

Yesterday's appontment went well. Her labs were ok, with some variations, but nothing out of control. She's needing less pain meds than earlier in the week so hopefully we will soon be not needing it at all! We debated over doing another culture, but decided unless she spikes more of a temp we'd wait until next week when she's in for her IVIG. Those three weeks roll around fast when it comes to infustions. Hard to believe though that she received her last one in the PICU on Chistmas. How quickly things change.

Today we are going up to Rochester to visit a friend who's there with her husband. I'm looking forward to seeing her as it's been well over a year. Last time we met both the girls were inpatient (she has a child with mito also). Anyhow, looking forward to seeing her. This morning Maya had speech and then she'll have school with Kevin this afternoon. She's doing really well with her work and I'm looking forward to some of the changes/additions we are making.

Right now she's sorting her beads into pails...dice, alphabet, stars, hearts, and jewels. she loves to sort and will do so for hours if you let her. It's a nice change from 8 hours of this..........



I suppose she should be encouraged to "balance" her time........oh, nevermind, she just started "ringing up" her beads on the cash register. I knew the silence wouldn't last forever. At least she's consistant.

Well, thanks for checking in.

Holly

Monday, January 8, 2007 8:44 PM CST

Today was a little better for Maya. I gave her pain meds pretty much everytime they were due and this seemed to help a lot. She actually did speech this morning with her ST and then we played Sorry. After we'd finished and I needed to get some meds ready I returned to find out she'd set up a game for her, Kitty, and Calliou.



This afternoon we read Junie B Jones and the Mushy Gushy Valentine. She actually let me read the whole book to her in one sitting while she lay on my lap. It was WONDERFUL, oh, the book was cute too! We listened to some story tapes and played leap pad for a little bit later in the evening before bed and she enjoyed that too, but was pretty tired by then (6ish) and it was more like me playing Leap Pad. I'd like to report I'm doing well on my phonic's blends and mastered "br" and "nd" this afternoon. Maya on the otherhand drifted off by the end of the book.

Tomorrow she has speech in the morning and school with Kevin in the afternoon. Wednesday we go in to see Dr Brumm again. Thanks for checking in on us.

Holly

Sunday, January 7, 2007 8:19 PM CST

Maya's IEP went really well on Friday. We were able to work out a lot of things and I think overall everything will go really well. We are going to try to not only meet her education needs here at home, but provide some social interaction with her peers even from home. I'll let you know how it works out, when it works out. She's still going to have Kevin three times a week and also speech three times a week here at home. We are going to try to get her more on the computer as she seems to learn best this way and fatigue less also.

Today was not such a good day for Maya, she pretty much spent the day on the couch and slept for the most part. She's having a lot of belly pain so we are trying a new pain medication to try and get that under control. Her labs from Saturday and looking really good so we know things are stable for the most part, it's just a matter of getting some of the smaller issues under control (If you can call pain smaller). Friday was a really good day as well as Saturday so it was nice to watch her play with her toys and by toys I mean her Dora Talking Cash Register. Basically her life circulates around that one toy right now. If you try to give her something else to play with she just scans it or "rings it up" with her cash register.



Pookie spent his day much the same way Maya did........



Thanks for checking in.

Holly

Thursday, January 4, 2007 7:54 PM CST

What a busy day we've had. This morning I had to get some things caught up and then Maya was able to open her presents FINALLY! It was so funny because she couldn't unwrap things fast enough. The biggest smile came with her DORA TALKING CASH REGISTER! She was so excited and "suprised" We reminded her she shouldn't have been suprised since she made a point of asking FIVE different Santa's for one. She's currently tucked in bed with her cash register and her Hello Kitty.

Today was otherwise a long day for her. After she opened presents she was basically too tired to do much else. She napped for awhile and has spent much of the afternoon in bed watching movies. Her belly is distended and uncomfortable and her legs are really bothering her too. Hopefully a good night's rest will help matters.

As far as our hospital stay we are still on two different antibiotics for her infection and and waiting on a few labs that were done before we left. They checked levels of her one medication we are using to prevent clots in her line to see if this medication needed to be increased. They also did some testing to further evaluate her immune issues. Right now we are planning on returning to Milwaukee on the 15th and locally next Wednesday. She'll get labs again this weekend too. On the fun hospital note she learned to shoot erasers off the end of a 12cc syringe. Let me just tell you it produced the best giggles in the world. I love those giggles.

On the Maya funny front..........Maya was overheard this week talking to her doll Mamali. She has voices for everything so in her Mamali voice you could hear, "..but Maya, I want a nurse too!" followed by Maya saying with attitude, "well, when you are in the hopistal to feel better THEN you can have a nurse too." She really likes her nurses....she does not like to share them!

Thanks for checking in. Tomorrow is her IEP at school then hopefully she'll be up to school with Kevin afterwards.

Holly

Wednesday, January 3, 2007 9:22 PM CST

We are home! We got home late this evening and dropped the car off at the airport before coming home. Maya wanted to have Chistmas, but after a couple of gifts we decided to wait until tomorrow to finish up. She's happy to be home and can't wait to see Pookie tomorrow. He was hiding at Miss Karla's tonight and decided to spend, "just one more night!"

I'm hoping to get my pictures downloaded tomorrow and get things settled and put away. I promise a longer Maya update then. I will share one Maya funny from the way home....Basically we sang our way home from show tunes to Sunday School songs to Barney. Well, at one point I started to cough and Maya said, "is that your birthday cough Mama?" (she calls her cough a "birthday cough" because it started on her birthday). Anyhow, I started to sing the Happy Birthday song to "dear cough" and followed it with the verse about you live in a zoo, look like a monkey and smell like one too. Well, Maya though I said, "God", not "cough" and cut me off saying, "Mama, I don't think you should call God a monkey and you SHOULD NOT tell him he smells!" Well, I had to backtrack and explain I'd said, "cough", not "God" Geez, the kid must think there is something wrong with me.

Holly

Tuesday, January 2, 2007 4:44 PM CST

Well the plan is to go home tomorrow (Wednesday). We did find out that her line is ok for now and we'll follow up on this and a few other issues when we return next week. I called the rental company and plan on the car around noon. Hopefully we'll be home around 4 or 5. I'll update after we get home.

Holly

Monday, January 1, 2007 10:13 AM CST

Happy New Year! Thing are going well here today. Maya's feeling good and her line is not bothering her as much. She's getting IV benedryl and visteril around the clock which is helping with her itching and wretching so she's feeling good and slept good last night. Tomorrow we'll study her line again and decide what to do about the clot and/or fibrin sheath then hopefully home on Wednesday. Maya will be glad to finally open her Christmas gifts although I think by now she's forgotten.

Thanks for all the messages, calls, etc. Your support is always such an comfort during these times.

Holly

Friday, December 29, 2006 12:14 AM CST

UPDATE!!!
Thought I'd update here as I have the contact info in the entry below. maya continues to do fairly well although today she's more sleepy and complaining of more discomfort at the insertion site from her line. She's got some clots around her line so we are trying to hit them hard with these antibiotics then do a line study Tuesday to see what the next step is. Right now the goal is to save this line no matter what. Most likely if she's still got clots on Tuesday we'll TPA her line and try to clear them that way. Only concern is they are harboring the bacteria. Only time will tell. She's having a tea party right now with her nurse and her Christmas doll. I'll share pictures when we get home, it's too cute.

Just wanted to do a quick update. Maya is still growing gram bugs in her line. They are thinking it is still MRSA so we added another med (Rifampin) for coverage trying to save this line. We were hoping to get home today before this last culture grew so now we are back in limbo as far as discharge. We moved rooms so new contact info is as follows: Rm 475 Phone: (414) 607-5075

She's got a line study at 12:30 so I've gotta run.

Thanks for checking in.

Holly

Wednesday, December 27, 2006 3:30 PM CST

Update: Phone Number: 414-607-5077

We are back on IICU in 477. She is now in isolation though as she's growing MRSA in her line and peripherally in her cultures from Sunday and in her line from the ones done here after starting the antibiotics. Today seems to be a better day for her although she's still pretty tired and having leg pain. She's suppose to have a bone scan and echo later today. Unfortunately we were moved very early this morning (around 6) so we are both tired just from that, but ti's been a pretty good lazy day. I'll have Karla update the phone numbers later as I don't have them with me right now.

Holly

Tuesday, December 26, 2006 8:13 PM CST

I thought I'd offer a quick update as I escaped for a minute to shower. Maya is still in the PICU although we hope to move to IICU (intermediate) tomorrow. OK, I know we've been saying that for day's now, but we are still hoping. She is some better today with no big temp spikes although she's still having some temps. She got a unit of blood this morning and her IVIG yesterday in hopes of boosting her ability to fight this better. The blood was due to her becoming so anemic and she's having some issues with DIC it was a good idea anyhow. She doesn't seem to be bleeding as much from her g-tube this evening although she's had several nose bleeds today. She is awake and talking today though which is a positive sign and even talked to her Nana on the phone this afternoon for a few minutes. Thanks for all the well wishes and we'll keep you updated. Still not sure what is going on to cause the sepsis, but finding more issues with her immune response to things at this point.

Holly

Monday, December 25, 2006 11:25 PM CST

Journal entry from this afternoon is first....Update on the bottom.

Holly called yesterday morning asking me to take them into Skemp to be admitted. Her legs hurt a lot, she had a high fever and high heartrate. Dr Gordon was called, labs and cultures were drawn, antibiotics started and the transport team was there by afternoon. They brought her to the PICU. Today, she seems to be a little more alert and it is possible that they will be transferred to the 4th floor intermediate ICU. Waiting to hear if they've been moved yet. Please keep them in your prayers.


I talked to Holly tonight. Maya continues to run a high fever. They did not move her to the intermediate ICU today. She is still in the PICU. The number there for those of you who need it is 1-888-685-9549, PICU #4.

Karla

Monday, December 25, 2006 5:31 PM CST

Holly called yesterday morning asking me to take them into Skemp to be admitted. Her legs hurt a lot, she had a high fever and high heartrate. Dr Gordon was called, labs and cultures were drawn, antibiotics started and the transport team was there by afternoon. They brought her to the PICU. Today, she seems to be a little more alert and it is possible that they will be transferred to the 4th floor intermediate ICU. Waiting to hear if they've been moved yet. Please keep them in your prayers.

Karla

Saturday, December 23, 2006 7:27 PM CST

Maya is so excited about the coming of Christmas. She has plans to decorate a cake for Jesus tomorrow although she's still concerned over how he'll be able to blow out the candles when he is "living in my (her) heart". She also can't wait to see what is in all the presents under the tree. She's become the present police in our house. She took all of my presents and hid them so I can't peek! She told me I'd just have to wait. I've tried bribery, threats, and whatever else I can think of, but she stands strong and I've yet to figure out what it is in my packages. She on the other hand has opened a few things this week and has really enjoyed playing her new games and her story reader. We also went to see the Nativity on Thursday which she really enjoyed. She liked how the Magi talked of the planets and the stars and to quote her, "when Joseph reached under Mary's dress to take the baby Jesus out of her tummy." Ummm...I guess I should have anticipated that. She really did enjoy the story though and I loved how it made everything so much more real, reminding of why whe are celebrating this season.

Tonight Maya's a bit under the weather. She's been dumping through her G the past few days and needed replacement fluids. Tonight she started with a temp, but still under the point we need to do anything. I'm hoping it is the excitment of everything and nothing more than a viral infection so we can stay home. She's in bed now sleeping so hopefully a good nights sleep will help too. Tomorrow we are going to church and hopefully over to Jakey's for Christmas Eve and again Christmas Day. I can't wait to see Maya open some of her most anticipated gifts and a few she doesn't have a clue about that I know she'll love.

I hope each of you have a wonderful weekend and holiday. May you all be healthy and blessed this season.

Love, Holly and Maya

Wednesday, December 20, 2006 8:57 PM CST

In case you haven't seen them there are new pictures posted on the photo page. They are from her birthday and from Rotary Lights.

Today we went to Mayo to see the eye doctor. The plan they want is to have surgery in the next couple of months to correct some issues with her left eye that if gone uncorrected could make they eye functionally unusable. Even with this surgery she'll continue to have visual issues, but this should help things not get worse as they've been over the past several months.

We also saw the pediatrician today and other than some issues with her sodium and magnesium things were pretty good. There is always something, but for the most part we are holding steady right now. Maya was so funny. She has this hacky cough that she's had for a little while and when asked about it she said it was her "birthday cough". When asked why she explained, "because I got it on my birthday!". Well, the nurse just informed me that tonight Maya had the "Chrsitmas hiccoups!" or that's what Maya called them anyhow.

Maya's very excited about Christmas coming and all that goes along with it. We sing several rounds of the "Little Drummer Boy" each day and another tune she's composed that is adapted from "Old McDonald", but talks about Jesus and the manger. She spends most of her time monitoring me and my "habit" of having to unwrap and rewrap all the gifts under the tree to see what they are....I have issues, what can I say, LOL! Maya is the tree police and see's to it I keep my hands of for the most part.

We know so many kids sick and hurting right now. Please remember these families in your prayers as many struggle to be home for the holidays and be with their families and celebrate in their own homes. Thanks for checking in on us.

Holly

Sunday, December 17, 2006 2:08 PM CST

Finally a chance to sit down and update. Thursday I ended up in the hospital with some sort of infection, but thankfully I was home again by Friday. Maya took her little vacation to the "spa" (our local respite home where she's treated like a princess, therefore she loves to go visit). She was happy to be back home on Friday though as was I. She's such a little cheerleader when I need one.

The past few weeks have been really full of all sorts of activity. We've been to Mayo to see the neurologist and changes were made there. We increased her neurontin, sleep meds, and one of her seizure meds in hopes of getting her more comfortable and her seizures back under control. There were some new neuro changes that we are going to keep an eye on, but nothing too exciting right now.

Last week we went to see Rotary Lights in LaCrosse. They light up Riverside Park with a million lights and also had a live nativity and Santa with his reindeer. We were able to go with Jakey and his family which made it extra fun. Maya loved seeing Santa again sitting in his sleigh with the kids...



She also had a wonderful birthday celebrating at home with Mama and at TGI Friday's with Mix Karla and Mama. She opened her presents while we ate lunch and then everyone sang to her. We tried some ice cream, but even with her vented we paid the price for that later. She did have a wonderful day day and such a good time. Thanks to everyone for all the wishes in the guestbook and all the happy mail from all our internet supporters out there. It was really a wonderful day.



We are quickly getting ready for Christmas and praying Maya can resist the temptation to rip into her presents before the big day. Mama on the otherhand already has done so, but that's another story for another day. Hopefully Mix Karla won't squeal on me in the guestbook!

Mayaism for the week: This week while out shopping we were talking about how we should make a cake for Jesus on his birthday (never mind neither of us can eat cake, LOL). Anyhow, she got really quiet and serious...very deep in thought. Well she finally piped up and said, "if Jesus is living deep down in my heart, how is he going to blow out the candles?"

Thanks for checking in,

Holly

Friday, December 15, 2006 5:05 PM CST

I just wanted to take a minute to update. I'll do a full update hopefully tomorrow, but I wanted to thank everyone for the Happy Birthday messages in the guestbook. Maya loved hearing from everyone and knowing how much you care about her. She had a wonderful birthday and even asked for it to last, "just one more day" when she went to bed. Unfortunately I ended up sick on Thursday and back in the hospital, but for now we are both back home and doing ok. Like I said, I'll update more tomorrow. Pictures too, promise.

Holly

Monday, December 11, 2006 9:12 PM CST

It's hard to believe my little Mayafly is going to be 8. She is growing so much everyday and really becoming such a beautiful little girl inside and out. I know most people come and tell the stories of the day their kids were born on their birthday, but I wasn't given the honor of being there at her birth so I don't have anything to share in that respect. What I am sure of is that 8 years ago, God sent a child to this earth to teach us so many things. In everything she does she shows such grace, patience, and such joy. If I could just harvest a little bit of what she has I would be such a better person. I thank God every day for blessing me with her and I DO know that 8 years ago only he knew what was in store for us and at that time already knew that some day two short years later I'd get the chance to be her Mama.

Maya is so excited that she's turning 8. She is looking forward to opening presents, decorating her "cake", handing out pencils to her friends at school, and blowing out her "happy birthday" shaped candles. We did have a fun weekend and also went to Mayo today, but I'll save that update for a less exciting day.

Please sign the guestbook and let Maya know you were here so we can read them as part of her birthday celebration. You all are so much a part of our journey we'd like to share this day with you too.


Holly

Friday, December 8, 2006 10:51 PM CST

I wanted to share a couple of Maya's artistic attempts from the past couple of days. The first is a picture of what she deamed the "dirty clothes tree" Apparently the hamper just isn't cutting it with her anymore.....



The next is a picture of her "food tree". She had been playing kitchen and the next thing I knew her tree was full of plastic apples, plastic pears, microwave popcorn and whatever else you can see....think of it as a Christmas Eye Spy.



As for the rest of our life...Maya's been such a teaser lately. She had to check out the Dora Cash Register's at Walmart yesterday and had made up a song and everything. On the way out we stopped in the bathroom and she just started giggling. I asked her what was so funny and she told me, "Mama, I think Santa is going to bring you a Dora Talking Toilet!" **insert wonderful little girl giggles here**

She saw the dentist yesterday and is still cavity free. She did finally get her tooth pulled so she was thrilled with a visit from the tooth fairy with two quarters! Her vanco levels from Wednesday were still low so we did increase her vanco this week. That's about it in new medical news. Monday she goes to Mayo for neurology and then Wednesday to the pediatrician for labs, etc.

Tuesday of course wll be her big day! I can't believe she's going to be 8 already. I'm sure she'd love it if on Tuesday everyone signed her guestbook so she could see who's checking in on her.

Thanks for stopping....

Holly

Wednesday, December 6, 2006 8:18 PM CST

Today was Maya's IVIG infusion. The three weeks between infusions always go really fast and the fact we spent most of Monday at the clinic and the entire week before didn't help any. The infusion went well and she slept through much of it. We were going to take our Christmas pictures with us to deliver, but Mama forgot them as I was rushing around to get there on time this morning...oh well, we'll be back next Wednesday so I'm sure she'll deliver them then.

Last night we went to a Christmas party for kids of differing abilities through the county. There wasn't much going on there, but she did enjoy her visit with Santa although a bit taken aback when he told her that he didn't think she'd get a Dora Talking Cash Register like she asked for at Christmas because he was already done shopping. I'm not sure if this is his standard answer to everything or not. She enjoyed her visit none the less.



I also had promised you Maya's view of things through her camera lens. Well, when I downloaded things I found about 40 pictures of various people at Sams Club, several cars in the parking lot, a picture of her foot, and this picture she deemed her favorite. "Why?" I asked. "because it is ME!" she answered. If you look close you can see her reflection in the rearview mirror.



Thanks for checking in. Tomorrow is her dental appointment, school, and Friday school again.

Holly

Tuesday, December 5, 2006 6:37 AM CST

We continue our attempts to move forward although many times it feels we are slowly sinking back. Maya has needed her J tube vented for the past several days due to distention and nausea. She's also needed additional pain medication several times each day to keep her comfortable. Yesterday we went to the clinic to have blood levels drawn on her vanco and gent and also to see the pediatrician, have TPN labs and a culture drawn. what is usually an hour or two visit turned into a 5 hour clinic visit and then last night we found out that we have to do it all over again since the levels were low and don't seem to reflect the doses she's on. Tomorrow she's getting IVIG anyway so we will be at the hospital much of the day, this will just extend that visit--just want I wanted to look forward to. We did make some TPN changes yesterday that I'm hoping will make our nights a little more restful, but we'll have to wait a few days to see how much it really helps.

Sunday they had a birthday party at the respite home Maya went to this summer and will be going to again starting in January. 4 of the kids that they care for (including Maya) have birthday's this month so they celebrated all their birthday's. Maya had a good time although it's obvious the changes taking place in her. She spent her entire time there on the couch, but enjoyed all the action around her and the attention for the girls there. It was so funny because she just fell back in her usual pattern of being their including playing, "hide the scarf" and wanting her nails done. For her birthday she had gotten lots of polish and a nail dryer from one of her nurses and the girls at the house too. She also got some new jammies and a blanket with the planets including SATURN! I'm not sure if I'd mentioned, but Saturn is on her Christmas list this year. She told me she got "earth" last year (then pointed to her globe) so she'd like Saturn this year.

Tonight is the county Christmas party so she is looking forward to going there. She enjoyed herself last year so I'm interested to see how she does. I know Santa is suppose to be there and they usually have some other activites too. We continue to be very busy here so I'm looking forward to going and a little break.

Thanks for checking in.

Holly

Saturday, December 2, 2006 2:45 PM CST

What's new at our house you might ask? Well, Mary and Joseph are currently fighting over who is going to ride the donkey in the "Jesus Parade" and the angel is trying to break them up. The parade from what I've gathered ends at a stable where you can meet with a camel and talk about Christmas and the Bible story. That being said, let me explain that Maya got a new Nativity a couple days ago. It is the Fisher-Price Little People one so she can play with it all she wants. It's funny because she has never once played with a Little People set no matter how much I wanted her to or how many times I bought the stinkin barn or doll house only to sell it in frustration and repurchase it the following summer at another garage sale. Anyhow, now she plays and she's loving it. She has her camera out and so as soon as I download I'll do as I promised before Thanksgiving and start her section of "Maya's Pictures-through her eyes". She's posed the entire Nativity gang for many a picture at this point.

Here is a shot of the Jesus parade.


Not too much else here. I did take her pictures for our Christmas cards so I can finally get those in the mail. I'm also going to add a few pictures to the photo page of Maya's tree that she decorates daily. It was her Dora tree from the year we spent the month of December in the hospital.

I hope this weekend finds everyone warm and healthy. We are so glad to be home. Maya continues to do well as long as her nausea meds are on time. We are adjusting to a new medication schedule as well, but things are going fairly smoothly. Thanks for checking in on us, we appreciate all the love, support, and prayers you all give.

Holly

Thursday, November 30, 2006 7:34 PM CST

We are HOME! We got home this afternoon in between med doses. She has about 10 days left of vanco and gent (antibiotics) and then we should be good to go again. She's doing really well. Her schedule is a bit busy now trying to add in these IV meds with her others, but it's still ok and next week she'll spend most of Monday morning at the clinic for labs and her appointment, Wednesday at the hospital for IVIG, and Thursday afternoon at the dentist to have a tooth pulled (if she can't get it out first) and her teeth cleaned. It never ends.

She was thrilled to be home and especially happy that all the Christmas decorations are up. She played with her Nativity for a couple of hours this evening and added a giraffe to the scene. She decided he'd come to see baby Jesus too. They then had a "Jesus Parade" around the living room too. I just love all the ideas she comes up with....so fun to watch her.

Tomorrow we are going to try speech at school and then in the afternoon she'll have Kevin for school here at home and the adaptive tech person from school is going to come and try a new computer program for her writing. I'm excited to see how she does.

Thanks for checking in and for all the messages while we were in club med.

Holly

Wednesday, November 29, 2006 7:58 AM CST

Good morning! Maya's cultures showed a growth of a new form of staph, but thankfully they are negative now. The plan is to continue treatment for 14 days. Hopefully Maya will be able to continue this treatment at home if all things remain stable.

Maya was having school yesterday with Mrs. Kevin when I talked to Holly yesterday. They were playing Bingo. Sounds like they were having a great time.

Continue to keep the two of them in your prayers!

Karla

Sunday, November 26, 2006 11:01 PM CST

Good evening! The results from the cultures have come back. Maya is growing MRSA, which is a staph infection. She is on 3 antibiotics as well as her normal IV meds. They did another culture today to see if it is still positive. If it is still positive after 5 days, they will head to Milwaukee.

Maya was quite silly when I was there today. She was putting on a show singing The Star Spangled Banner. It was quite beautiful, especially the little mispronounced words. LOL Gotta love when a kid sings such a hard song. She even added sign language along with it!

Continue to keep them in your prayers.

Karla

Friday, November 24, 2006 10:30 PM CST

Hi everyone, it's Karla. Maya was admitted last night for an infection. Right now they are at Skemp in La Crosse, 608-785-0940 Rm 524, but if necessary, they will transfer to Milwaukee. Maya slept last night and most of the day today. She was awake when I visited tonight. Please keep the two of them in your prayers. I will keep you updated on what's going on.

Thursday, November 23, 2006 8:00 AM CST

Happy Thanksgiving Everyone!! We have so much to be thankful for this year. I often wonder if people really realize how thankful we are or how much we really are blessed. I think they see Maya with her tubes, pumps, and other issues and don't understand how good things actually are or how I could ever be thankful for having a child with these kind of issues, but it's easy. This year we are home for Thanksgiving! Two years ago Maya was inpatient, last year we'd just come home from a several week hospital stay, but this year....we've been home nearly EIGHT weeks! We are so thankful for our wonderful team of doctor's and nurses who are so dedicated to caring for Maya and valuing her quality of life and desire to be home foremost. We have such wonderful friends who've supported us so many ways this year. We are thankful for our family. I am so increadibly thankful for Maya's health. She's doing so well and growing into such a beautiful young lady. I feel so blessed to see that happen. I'm thankful for caringbridge...a place I can come and share our life and be supported by so many of you no matter what we are going through.

Today we are going to have dinner with friends from church. Hopefully it will go well. Maya doesn't eat, I eat a gluten-free diet so sometimes I wonder why I bother, but I'm really looking forward to the company and visiting with friends. Yesterday was her doctor day. We drew a blood culture due to some issues she's been having, but we are nearly at 24 hours with no call so I'm feeling like we're ok there too. Her labs weren't perfect, but ok. I'm going to give some extra fluids to see if we can correct her BUN. Her LFT's (liver function) are elevated too, but we'll just keep an eye on those...they tend to fluctuate. I found out her Co-Q 10 levels are still pretty low so I'm not sure what we'll do there. I know right now she wouldn't tolerate any more med wise as we are trying to get her back on some feeds so I guess we'll wait and see.

I'm hoping to decorate this weekend for Christmas. I know Maya's looking forward to it. I'll post some pictures when we are done.

Thanks for checking in. Have a wonderful holiday!

Holly

Sunday, November 19, 2006 10:07 PM CST

What a weekend! We had a wonderful time with family and although we had our share of issues...fevers, pink eye, etc everything turned out well. The girls both got cameras for their birthday's from Nana and were so funny. Half the time they were taking pictures of each other taking pictures! I was thinking I'd start a new section of Maya's journal that will be her pictures. Life from Maya's perspective. It could prove to be a real hoot! Here is an example of what I mean.

Maya taking a picture....


Maya's picture


The girls also decorated their own "cake". Maya doesn't reallly eat anymore so she was excited to help decorate this cake with Autumn.

Decorating.....


The finished cake....


The other big it was Knock-knock jokes. They sat on Nana's lap just giggling at all they could come up with. Maya tells the bananna/orange knock-knock joke backwards and then they spent most of their time just making up their own jokes!

Telling knock-knock jokes....


All that fun takes a toll on a couple of girls though. In fact, this is how Maya spent part of Saturday afternoon as she was running a fever all day. Then she kindly shared it with her cousin.



Well, that's the weekend in photo's. With the holiday this week it is a short school week. Doctor appointment on Wednesday, I think we'll decorate on Thursday....and Friday's the big day--SHOPPING!!!!!

Take care and thanks for checking in on us.

Holly

Friday, November 17, 2006 9:51 PM CST

Maya had so much fun today. It was their harvest dance at school and the second graders did a parachute dance to "Under the Sea" and also to the "Mexican Hat Dance". She was so proud of herself and was so cute as she waved the entire time she circled around the parachute. Kevin came to watch which made her very happy and she was even more excited by the fact Nana and Papa were here to watch her!

Nana and Papa came Wednesday night and were here yesterday morning to see her. Unfortunately due to illness (mine!) she wasn't able to go to school except for yesterday's practice for her dance. Today though she went to school and then came home for a quick nap before returning to school to dance, home again to nap and then up again this evening to play with her cousin who is also here for the weekend.



As I said above I've been sick with who knows what, but am starting to feel better. Yesterday I felt the worst and now if I keep up on the motrin it isn't too bad. Maya on the other hand seems to be getting it now so I'm hoping she doesn't get too sick from it and is able to enjoy her company this weekend. Hopefully we'll have lots of fun to report on Monday and lots of pictures to share after our weekend with family....until then.....thanks for checking in.

Holly

Monday, November 13, 2006 12:23 AM CST

Maya wanted to share her turkey with everyone. This was one of our projects this weekend and one she's been itching to make since before November even started. She is so proud of her creation she doesn't want to hang it on the door because then she won't get to see it all the time! Actually her exact words were "Pookie wouldn't get to enjoy it", but like so many of Pookies requests they translate into what Maya really wants out of something.

We had a quiet weekend. She'd had a busy morning at school on Friday (she goes from 8:30-11:30) so she slept most of Friday except when I woke her up to try to do some school with Kevin and slept much of Saturday too. We did snuggle in and watch Bambi II on Sunday from her camp out location in the recliner (she lives in that thing!) We caught up on our Junie B Jones book and worked on our Bible verse. Other than that a nice quiet weekend.

On the medical front her feeds didn't go well on Saturday, but most likely that was secondary to all her activity Friday, but she was up and running again on Sunday. We've weaned her down to just one med for nausea and she's doing well with that. She still is having problems with leg pain and some seizure activity at night, but we see neuro again in December to sort that out. Wednesday will be her IVIG infusion at the hospital, but that is it for this week.

She continues to play pretend a LOT. I can't get enough of her "voices". The other day she told Hello Kitty, "College is where you stay until your Mama gets a message from God to come pick you up!" When I sorted that out she was talking about the orphanage and how it was God who brought us together as a family.

Thanks for checking in.

Holly

Friday, November 10, 2006 7:57 AM CST

This has been a nice, quiet, uneventful week. Of course, now that I said that something will happen today to change that! Maya's made it to school four days this week and has loved every minute of it. She's preparing for her first school performance next week and is very excited about that. They are doing a dance and then in December she's going to be singing with her music class.

Wednesday was our doctor day and her labs looked really good so that was good news to hear too. She got her flu shot which made her less than happy and we scheduled her for her IVIG next Wednesday.

Yesterday when she was working on her school work with Kevin she said one of her Maya funnies....she was adding on her fingers and the answer should have been eleven. When she got to ten she looked up and asked Kevin, "can I have another finger?" This this morning she was telling me how she could do her own hand shakes with herself. Well, she started and then looked and me and said, "oops! I think I need another hand!"

She continues to play with all her stuffed toys and do voices for each of them. I don't think I'll ever tire of hearing her play......

Next week we are expecting visitors, Nana and Papa along with Auntie Jessy, Uncle Mitch, Auntie Rhonda, and Cousin Autumn. Maya is so excited that is about all she can talk about. She has big plans for them all so I hope they are prepared!

Thanks for checking in.

Holly

Monday, November 6, 2006 9:24 PM CST

Our weekend was pretty non-eventful. Maya and I didn't really do anything and Sunday she wasn't feeling well with some bleeding from her g-tube again. She isn't really tolerating feeds again although that seems to be improving already so hopefully we are through this part of the episode already. Maya's having lots of trouble with her restless legs and leg pain again. She's on all the neurontin she can be on so I'm not sure what the problem is except that she's anemic and sometimes this can make her leg issues worse from a restless leg standpoint.

Today she went to school and was thrilled to not only work on her dance for her harvest dance later this month at school, but they also worked on their songs in music for their holiday sing. Maya loves to sing and loves to dance so today was her day. So much so that she came home from school shortly before noon, told me about her day and then slept until 5pm this evening! I just can't get use to her sleeping so much just to make up for a short day of school.

Tomorrow she'll have school and then Kevin in the afternoon. Wednesday is our doctor day and labs again. I am loving all the pretending she's doing with her Hello Kitty and her turtle. She has voices for each of them and they have such wonderful conversation. If your really lucky at our house, you even get to join in the fun with them.....so much fun.

Thanks for checking in. I added new pics to the photo page too.

holly

Friday, November 3, 2006 6:53 PM CST

Wow! I thought I'd updated since Monday...where did the week go? Lets see....Tuesday Maya and I went to school in the morning and took one of her nurses with us to orient her to the school and Maya's schedule. We had plans to then come back for her party in the afternoon and also take the "tooth fairy" to visit at the hospital, but Maya was so tired after school that she came home and slept until I woke her up about 5pm to go trick-or-treat. That seems to be the standard anymore. If she does school in the morning she sleeps the afternoon away. She is really enjoying school though and loves PE, music, and art the most. She did enjoy going out on Tuesday night with Jakey and Devin and wanted to be "first" all the time. She was too funny since usually her wheelchair didn't reach the front porch because of steps, etc and after about the second house she didn't want anyone else touching her bag. She'd tell me, "the man (lady) can just come out and give me my candy!" It's even funnier since she doesn't eat the candy and hasn't even asked what happened to it since we got home that night.

Wednesday was our clinic day and then we spent the afternoon with a friend. It was a nice afternoon to visit and just relax. I had Maya packed up for the day since I'd thought we were going to get blood so I had a backpack full of hours worth of meds with me and there was no rushing to get home. Maya's still borderline for needing transfused and symptomatically needs it although she hasn't reached that magic number we usually transfuse at. I guess we'll revist the idea next week and see how things are going. The rest of the week was school and then school here with Kevin. Maya's been working on her numbers and adding. Unfortunately she's having "blurby" (blurry) vision the past few days and it's been harder than usual, but she's doing really well.

No plans for the weekend. I'm sure we'll find something fun to do though or else just hang out and relax. Thanks for checking on us.

Holly

Monday, October 30, 2006 1:55 PM CST

This is Maya's "chair dance" she so kindly graced us with at a party we went to on Friday night. It was the funniest thing. I wish you all could have shared it with us because she was in full MAYA mode. The party was at a local diner and Maya mostly just sat at the table and watched the chaos in front of her, but when the music got rockin, so did she (not that she got up, but that girl knows how to entertain). The played great music for kids...The Adamm's Family, Purple People Eater, Spiderman Theme, etc. She even let them paint her face which is a first.



On Saturday she wanted to "practice" Trick-or-Treat so we went to the local grocery where they had treat's in each department. Of course for her it isn't so much about the treats as it is dressing up and seeing other people dressed up. She tells everyone, "The Disney Store was out of Tinkerbell, so I changed my mind. Now I'm the Tooth Fairy!" I think she is actually more excited about being the Tooth Fairy then she ever was about Tinkerbell. Her favorite part is the toothbrush in her hair.



She's only had one more bleeding episode that was difficult to control and that was last Thursday. She's done really well since then. Today we had to go into the hospital for a GJ change since when I flushed in her meds today they came right back out her G tube. She's so funny though, laughing through the whole thing because she loves the doctor who places it. Funny she always had to be sedated in the past before he came along to do it. It was a long one today too since the tube didn't want to go into the jejunum (small intestine) like it was suppose to, it just kept curling up in her tummy.

Yesterday we went to church. Actually God had a good laugh since I had all these excuses in my head why we couldn't make it there and my finally one was that we were running late and I didn't want to walk in late and make a scene. Well, once I decided on that I plopped on the couch to watch TV instead and right when I turned it on, the news was talking about Daylight Savings Time! Yep, I had a whole extra hour left......so we were actually ready early. So off we went. It was a good thing.

Thanks for checking in on Maya. We appreciate your notes and e-mails.

holly

Wednesday, October 25, 2006 7:46 AM CDT

UPDATE!!!!! Just wanted to update from yesterday. Maya did well with her IVIG until the end when she had a really bad nose bleed. It's most likely not related, but not something we usually deal with either. Anyway after about 15 minutes we were able to get it to stop although it restarted after we got back home. She'll have to go in and have it cauterized today if it restarts again. This isn't helped by the fact she's on lovenox (a blood thinner). She was also having blood in her urine and out her g-tube and g/j site. Add to that a hgb of 9.4 before we started and I'm fairly sure she'll be getting blood soon. She usually gets transfused below 9. Today she's done well so far although her tummy is bothering her more than usual.

Not much time this morning as we are getting ready to leave for Maya's IVIG at the hospital. I wanted to share one of the projects we worked on yesterday though and Maya is so proud.



She calls it her Princess Pumpkin



She loved the decorating and other than the glue it involved NO YUCKIES. Maya has some sensory issues so the thought of touching the insides of a pumpkin for her were just too much. Like I said, the glue was enough to deal with.

Yesterday wasn't so great for her in the morning. School is really wearing her out so we stayed home and she rested. The good part about that was she was more than ready for Kevin to come and do school in the afternoon. She did so well. The did a pumpkin art project and math which was lots of skip counting. She's really trying with the counting.

Well, we'd better go, I have meds to finish before my ride gets here (van is in the shop) and I'll update this evening if anything changes today while we are in.

Thanks for checking in!

Holly

Monday, October 23, 2006 1:15 PM CDT

Maya had a relatively quiet weekend. No real changes medically except due to some tummy issues we weren't able to run feeds, but today she's back on feeds and doing ok. She actually slept for much of the weekend taking 4-5 hour naps each day and then sleeping all night. Other than that she was just Maya and played with her toys. It was nice not to have a whole bunch to do. Saturday morning we did go and get her pictures done with Karla's boys. The place was packed. The pictures went pretty well considering both Jacob and Maya weren't feeling their best.

This week is a short school week. Thursday and Friday are days off and Wednesday is her IVIG day so she misses then too. Today was a great day at school by all reports and she really loves music and PE which were both on the schedule for today. She also has her homebound instruction today and tomorrow so she'll be a busy little learner. She's working on an art project here at home and also her math and reading.

Thanks for checking in on us.

Holly

Friday, October 20, 2006 8:15 PM CDT

"Mama, the water's drippin' out! I'm me again!" this was the Mayaism of the evening. I had used her medication to clean her ears (which she hates) and after putting the drops in her ears she lays there like she can't move until the feeling goes away. What I wasn't aware of before tonight was that during this time she is no longer Maya! How funny is that?

As far as the past two days go....Maya went to school on Thursday and Friday. Thursday I went as her nurse which was a learning experience for me since when I am with her at home or when we are with friends I can deny that she is any different then all the other 2nd graders. Seeing her with the other kids and how she is looked at by the kids and how she's unable to do the skills other kids her age are doing was hard to swallow. I did get to see her in PE which she loved, but again it's obvious she can't keep up with the other kids. She did have her adaptive PE teacher with her and it was great to see how hard she worked to have Maya doing the same activities as the toher kids and how much Maya enjoyed it. She also had music which she LOVED and it was so fun to watch her.

Thursday she came home from school and slept about 4 hours and again today she slept all afternoon. Today she's got something else going on though and had 3 seizures while sleeping and has horrible diarrhea (won't she love to read this when she gets older and finds out how I advertised this to everyone?) Anyhow, I'm hoping she feels better in the morning. We are suppose to go with Jakey and his brothers to get the kids pictures done in the morning then she has a nurse tomorrow afternoon and evening so we Mama's are going out without the kids for a little bit.

Not much else going on. I'll update if things change with her medically otherwise enjoy your weekend and we'll update Sunday eve or Monday. Thanks for checking in on us. If it's been awhile we'd love to hear from you in the guestbook.

Holly

Wednesday, October 18, 2006 7:27 AM CDT

Good Morning! Well after a late night last night we are home from Milwaukee. It's always a long day when it takes nearly 4 hours to get there and then a repeat on the way home. Maya had her CT of the chest first which was to follow up on a nodule in her chest we discovered during her last admission. After labs we then headed to the SN clinic to see her doctor and also her GI doc. Our appointment went really well and they were happy with Maya's progress. Her feeds are now at 5cc and we are going to start increasing them at 1cc/hr every 3-4 days. Hopefully this way we'll get to our goal of 20cc/hr in 6-8 weeks. We now have a plan for her pseudo flares and this could slow the progress of her feeds depending how/when it occurs. She is continuing to gain weight so there were changes made on her TPN to try to slow this down. Hopefully today we'll here about her CT and her labs.

This morning she's exhausted and having tummy trouble. Most likely it's just from all the time sitting in the car yesterday, it seems to take a lot out of her. She also has a runny nose so I'm hoping she's not getting a cold on top of everything else.

The rest of our week is pretty quiet. Next week is IVIG again and a visit to the pediatrician. I'm hoping Maya will be ready to get back to school tomorrow and get to finish out her week with school. She's only been once since her discharge a couple of weeks ago. She has been seeing Mrs Kevin for her homebound instruction so she's really enjoyed that. She'l learing so much it's really fun to watch.

Thanks for checking in.

holly

Monday, October 16, 2006 11:04 AM CDT

Rainy Morning! Have I ever said how much Maya hates the rain? She acts personally insulted that it would rain on HER! She's not into getting wet at all, if you drip anything on her when doing meds etc it is the same thing...."oh, wet, wet...there is water on me!" It's actually pretty funny since she loves swimming or playing in the water, just can't handle droplets.

She went off to school this morning and hopefully is having a good day there. I haven't heard from her nurse or her teacher so I'm assuming that all is well. Tomorrow she's off to Milwaukee to see her Sniggledoodle (her name for on of her doctors). I feel like right now things are in an OK place considering how she feels so I'm hoping it will be a good visit.

That's about all the excitement we are looking forward to this week. Hopefully we can stay low key and Maya won't throw any excitement in the mix. She's really enjoying her pumpkins and has to wash them daily..."they ARE dirty you know!" She's got a loose tooth again and informed me yesterday that the tooth fairy is a fairy and so is Tinkerbell so she'd like Tinkerbell to come when she loses her tooth next time. And for those of you who've asked, yes, she still loves Dora. The new Dora DVD is causing some confusion though since she travels the world and speaks French, Russian, and African.

Thanks for checking in.

holly

Saturday, October 14, 2006 8:18 PM CDT

**check out the new pictures-photo page**

I can not even put into words how excited I am tonight...and for such a small thing. Tonight I have one of Maya's nurses coming about 10:30 and staying the night so I can sleep (or that's the plan anyhow, not sure how I'll actually sleep, my body is trained not to). Since we've been home I haven't had 2 hours of uninterupted sleep and although it really doesn't seem like that big of deal, I'm still looking forward to the sleep. Other than a few nights here and there that are harder than usual the lack of sleep doesn't really bother me. There have been a few tired days, but for the most part it hasn't been as bad as I anticipated it was going to be.

Anyhow, enough about me....you came here for my butterfly girl. Well, she's been doing pretty well and until meds this evening hadn't even complained about her belly all day! Even tonight was quickly fixed with some zofran and a hot pack. I think we are finally coming out of this pseudo cycle and getting back to her norm. Tomorrow I'm going to try her feeds back at 3cc/hr for the day and see how it goes. That'll be the big step as to how well she's doing.

She's been so pleasant today and really fun to be with. We went to Walmart just to get out for a little bit and pick up a birthday gift for my sister. Maya really thought she needed the Dora Princess Castle or at least SOMETHING Dora, but I told her Auntie Jessy is getting a bit too old for that kind of stuff and she said that was fine, there would be more left for her at Christmas this way! She did finally get to pick up the new My Little Pony movie that she'd saved up for and promptly came home and watched it FOUR times in a row! You never have to wonder if she likes something. She's also had quite a few conversations with Hello Kitty today and I just wish you could hear her. She does a different voice for Hello Kitty and everything. I could sit and listen to her all day...

Thanks for all the Tinkerbell advice. I'm bidding on ebay and if I don't find one there I found another online I can order. Of course with snow the other day already she may be wearing a winter coat on top of the whole thing anyhow. I found out today why she choose Tinkerbell. She told me Ariel is still her favorite princess, but she doesn't think she (meaning Maya) should be wearing a tail, it really bothers her the thought of having a tail on AND she really likes wings and "Mama, Tinkerbell is really like a butterfly fairy!"..............always about the butterflies.

Thanks for checking in.

holly

Wednesday, October 11, 2006 9:53 PM CDT

Update!! October 12.... Just wanted to let everyone know our trip to Mayo went well. The doctor was really happy with her progress developmentally and the degree of delay is staying the same which means although she's delayed she is still making progress forward which is what we want to see. He was impressed with all the progress she's made despite all the hospital admissions she's had this year. On the way home we stopped by the Disney store to find Tinkerbell and were informed they choose not to order any Tinkerbell's this year!....so we are still thinking what we're going to do.

She's so tired this evening she was asleep by 6:30, but won't get out of my lap....hoping this doesn't mean something is up.
-----------------------------

Maya continues to have issues with her tummy, but each day is an improvment. We have started a few new meds both to control teh nausea and maybe help the motility. The nice thing is they are all IV so we've been able to get them in her. The way it's been she hasn't gotten most of her dailey meds because she just can't tolerate them. Today she slept pretty much all day, but this evening was up and she made a cute haunted house with her nurse from fun foam.

Tomorrow we have to go to Mayo for her developmental peds appointment. She hasn't been in almost a year so hopefully he'll see what huge strides she's made this year. Yesterday she had the chance to work with Mrs Kevin and go into school for speech. She was whipped afterwards, but so proud of herself. Mommy was pretty proud too as she did really well.

Friday hopefully she'll get to go back to school for at least a little bit. I know she'll be thrilled to see her teacher and all her friends. She still has the card they sent her in the hospital in her room. It makes her feel so good they don't forget her when she's gone and are so happy to see her when she returns.

Thanks for checking in on us. I'll update tomorrow after we get home from Mayo.

Holly

Monday, October 9, 2006 9:56 PM CDT

Well, Maya had another rough day. She has been distended and doing lots of retching the past few days and today only got worse. By 8am it was almost non-stop so we headed off to the doctor for x-rays. The nurse was here already so her labs had already been drawn. Long story short there is really nothing going on except she seems to be in a pseudo-flare. She's really quite miserable, but between the zofran, benedryl, and now visteril she's sleeping well right now. Hopefully adding the visiteril will keep her more comfortable tomorrow too.

So....not much new here. She hasn't really felt like doing much, but she's very into her "baby". Unfortunately she doesn't feel well enough to take care of her, but has requested I "give her a bottle", "put on her jammies", and "get her sleeper on in the morning". You know, because I have so much free time on my hands to care for A DOLL!!! That being said I spent five minutes this morning getting the baby ready for her day. You might ask why I do this. Well, I've been waiting for over 7 years to have a little girl who wanted to play baby dolls and use her imagination to play and she's finally doing it! It is so exciting and fun to watch I have to help out when she needs me. Of course, when she asks me to hang the TPN for her baby at night I might have to draw the line!

Thanks for checking in, hopefully next time you come see us I'll have better news to report.

Holly

Sunday, October 8, 2006 8:38 AM CDT

I hope everyone is having a good weekend. Maya is having better days, but still having lots of belly issues. She isn't able to tolerate much through her J-tube and her belly is distended which makes her sore and nauseaous. She is getting Labs done on Monday and Thursday this week along with seeing the doctor and also seeing developmental peds at Mayo.

Thursday night Maya was feeling well enough and also had a nurse to help out so we went to Torchlight parade in LaCrosse. This parade is part of Octoberfest and takes place at night in the dark. All the bands and floats are lit up. Maya really enjoyed it for about half and hour, but then became pretty tired. It was fun though...


Watching the parade


Meeting a greyhound during the parade


Enjoying the lights!

She's mostly been laying around this weekend, but has started playing pretend with her baby. I love to listen to her play....

Not much else here, thanks for checking in on us.

Thursday, October 5, 2006 2:59 PM CDT

Maya's not had such a great transition home. She's had quite a bit of pain and retching, but I think today we finally have gotten some control over this. She is so distended all she can wear are her loose fitting cotton dresses, no pants, nothing with any type of form. You give her 2cc of meds and she either has to go lay down or retches depending where we are with her Zofran. I have to say Praise God for zofran and toradol.

Yesterday was her IVIG. It went really well and she was glad to make the escape afterwards and not have to stay in the hospital. As poorly as she feels I'm not sure that would have been all bad.

It's busy here and we are both tired. She's not been up to doing school or even doing much other than sitting in the recliner. She's watching the Little Mermaid right now....she loves Ariel so much. She said she'd be Ariel for Halloween, but she doesn't like tails so she's going to stick with Tinkerbell.

She's been wanting to play in the leaves for weeks now so we did venture out this afternoon for a little bit and she played. Didn't last more than 10 minutes, but it was 10 minutes of pure joy for her.







Thanks for checking in....

Holly

Tuesday, October 3, 2006 8:44 PM CDT

WE ARE HOME!!!!!!!!

We got home yesterday afternoon and the past 36 hours have been a blur. Lets just say I've yet to sleep and Maya's sicker than when we left the hospital. I knew when she woke up yesterday that she didn't look "well". She just gets this "look" when she's got something going on and she had that look before we left the hospital. since we've been home it's been lots of wretching, vomitting, and general pain in her belly. it's more like what she was feeling a week or two ago. Today did seem better than yesterday so I'm hoping she'll continue feeling better as the days go on.

Tomorrow she is going to the hospital for her IVIG so we'll spend several hours getting that done, but then hopefully home for the evening. Right now things are pretty busy with meds, but after the 10th things will slow down as we'll drop 3 of her antibiotics and her meds won't be so frequent anymore. She'll still have her J-meds and a few IV, but not so many. A few days ago she was started on lovenox which is an injection and she's doing such a good job and helping to give her own infections. She is such a brave little girl. After I do it she tells me how "smart" I am to do it with only a "little" owie.

I have to share a Maya funny. Yesterday a friend had met me here to help me get unloaded and settled in. We were visiting before she left and she said something to Maya and started by saying, "Surely you aren't going to....." Well, Maya got this funny look on her face and said, "did you call me Shirley? I'm not Shirley, I'm Maya!"

Maya is hoping to get back to school later this week once they give us the OK. The doctor's have said she can do what she's up to doing and this is something she really wants. Take care and thanks for checking on us.

holly

Sunday, October 1, 2006 2:08 PM CDT

I can't believe it is October already. Maya is already planning her costume...seems like every year she makes these plans while in the hospital. Anyhow, she wants to be Tinkerbell this year so that's what we're in search of.

For the most part she's feeling pretty well. Today she's distended and hurting more than she had been belly wise, but other than that she's doing well and looking forward to breaking free tomorrow. We have lots of work in planning our escape, but hopefully it will go smoothly and we'll get out of here at a decent time to start the drive home.

We've had some med changes that will change our day a bit so I'm sure it'll be awhile before we get on a new schedule. She's handling her new shot pretty well. It is a little shot in her tummy every morning (lovenox) and is to help keep her from forming little clots and hopefully help in the quest to cut down on the infections she ends up with. She's mastered her eye drops without a fuss now so I'm sure she'll tackle this next challenge just as well.

Hopefully the next update will come from home!!!!! Thanks for all the encouragement you guys continually provide us with and thanks for taking the time to check up on us.

Holly

Thursday, September 28, 2006 3:52 PM CDT

Update!! Maya had her line put in today along with an EGD. She did well with both and is sore, but doing well this evening. We are hoping for an escape on Monday...I'm also hoping I'll finally have my modem and internet access when I get home again. Anyhow, things are looking up and my butterfly is ready to break free.

I only have a second to update. Maya's getting blood right now since her hgb was only 7.9 this morning. Her sed rate was also up at over 100 so I'm not sure what that means. Her liver is still enlarged and she's quite distended even with no feeds, but I guess we'll see what the day brings. She's sleeping right now, but then again she's had visteril and benedryl already this afternoon so I'm sure that's why.

We've been moved again and are now in 474. The phone number is posted at the bottom of the page. Hopefully this will be the last move. We are still on IICU, just in a different room. With her being in MRSA isolation we have to be by ourselves (yeah!). I guess you have to look at the positives of everything.

Tomorrow is the big day (again!) as Maya's suppose to get her new Broviac. We'll see if all goes as planned. If she does and nothing new turns up then we get to go home Monday. I try not to get my hopes up too high, but we are both looking forward to it.

I've been reading Kipling's "Just So Stories" to Maya and she was going to paint a picture for her doctor of one of the stories as a thank you for the book. Anyhow, she asked how she should do that since the book has no pictures and I told her to paint what she sees when I'm reading and she closes her eyes, like in her imagination. Well, she painted the paper BLACK! She said, "Mama, that's what I see when I close my eyes!"

Thanks for checking in. She's loved the e-cards and was especially thrilled to get one from her teacher and class at school. She misses school so much, but is enjoying her teacher here. Thanks too for the calls and little packages she's gotten. Will all the prayers and support this journey is always a bit easier.

Holly

Tuesday, September 26, 2006 6:36 PM CDT

Update!!! New Info at bottom of page.
Maya was moved to 478 today. The new number is 414-607-5078. I'll post it at the bottom too. We have another culture growing so new line placement is on hold right now. Still hoping for discharge Monday if all goes well. She's slept most of today, not sure why, but hoping it's just her body healing.

Maya's doing much better this afternoon and her new line is working so much better. With the old we needed an additional IV to handle everything since it couldn't handle boluses, but this one works great and isn't positional or leaky. The plan is with continued negative cultures to put in her broviac on Thursday and scope her then also. I'm not sure if they are doing a colonoscopy and EGD or just EGD, but either way she'll already be in the OR so it shouldn't be a big deal.

She did well with school this mornnig and we started reading a book together that her doctor brought her last night. She is enjoying the stories of Kipling in "Just So Stories" and today we learned how the Whale got his throat, the Camel his hump, and the Rhino his skin. She's back to feeling well enough to argue that she is the only one to use the call light when her pumps beep and it seems the people at the desk have learned of her quirks since they are now keeping up with all the please, thank-you's, and your welcomes she requires.

Not too much else here. We are starting pancreatic enzymes once we start her feeds back up to see if that helps. She has had several tests that show this is a concern so it's something we haven't tried yet.

Thanks for checking in.............

Holly

Monday, September 25, 2006 10:06 PM CDT

Maya ended up spiking another high temp last night and ended up having her line pulled and a new PICC placed this afternoon. At least now we won't have a PICC and a PIV also. The PIV was being replaced at least daily since the PICC was in a place unable to handle the volume of her bolus. This one is better. She's on two new antibiotics added to the mix and this evening her temps are more in the 100-101 range. She did have more pain and needed the toradol again which is also helping control her fevers.

The PICC placement went well and although they attempted sedation they weren't able to get her sedated. She did return to her room and sleep from 4pm on so I'm sure that is some of the after affect.

Her doctor is reviewing all her labs and talking with her other specialists to come up with a plan and see where we stand as far as everything goes right now. He is hoping we can get a Broviac placed on Thursday or Friday then return home to finish antibiotics. Not sure the length of everything yet, but I'm sure there will be a few she continues on after discharge.

She was able to do a little schoolwork with her teacher this morning and enjoyed that along with visiting her Dr Sniggledoodle! That's her name for her doctor her and she can be laying there not feeling well at all and perks up just long enough to visit when he enters the room.

Thanks for continuing to check in. We appreciate all your messages in the guestbook, e-mail, calls, and e-cards. On the hospital website you can send e-cards through their gift shop for free and she enjoys receiving them so if you get a minute I'm sure she'd be thrilled to hear from you.

Holly

Sunday, September 24, 2006 4:28 PM CDT

What a change a couple days can make. After I journaled last I returned to the room to find out that Maya again had positive cultures. This time it was gram negative. We now have ID on this an it's enterococcus which is somthing we've dealt with before, but is NOT what we wanted to hear. She's been started on a couple of more antibiotics (zosyn and tobramycin) and tomorrow she'll get her PICC removed and hopefully changed out for one that is silver impregnanted and therefore less likely to become infected. The catch is, there are none of these catheters here so they are calling other facilities looking for one. Maya seems to be feeling ok although today she's less active and back to not getting up to go to the bathroom etc. Her pancreatic enzymes and LFT's are elevated and continue in an upward trend along with her sed rate so we definately haven't gotten on top of things yet.

She's had her "Hello Kitty" nurse today as she calls her. They both share a love for Hello Kitty so she sent me out to the van to find her Hello Kitty pillowcase in exchange for the Little Mermaid one she's been sporting on her pillow. She has this homely-looking, well-loved Hello Kitty in bed with her too which is looking so ragged I'm wating for someone to blame her for the bugs that keep cropping up, LOL! She's clean, just very loved!

Maya funny: I was playing with Maya and some of her flashcards yesterday and asked for her to read the name and point to the picture on a card. The card showed a red bird and the word was B-I-R-D, but she answered, "scarlet macaw", she then continued on to do a bird call and followed up with a card that said C-A-T by saying, "baby jaguar" and then F-I-S-H, "humpback whale" and included their respective calls. Think she is watching too much "Go Diego Go"????

Thanks for checking in, as always we love to read your messages and thank you for all your thoughts, calls, and prayers. I don't know how we'd get through without all your wonderful support.

Holly

Friday, September 22, 2006 7:16 PM CDT

Well, two IV's later she is still hanging on. We are using a peripheral IV and her PICC to hopefully hold off line placement until Monday. She had to have one restarted an hour ago, but so far it's working. We are able to run her bolus and some of her meds through the one line and TPN and ampho through the PICC. Today she had a neck u/s to see what vessels are still open for surgery to use. It looks like there is a new problem with the right subclavian, but otherwise we should still be good and things should go well Monday with the placement.

Her liver numbers continue to rise as do her pancreatic enzymes. The thought is it's from stress from being ill and GI has seen this in another child with mito cytopathy before so we are just watching things for now. She's only needed extra pain meds once today and had a good day so we are seeing signs of improvment.

This morning she had school which tired her out as did the trip down to radiology, but if she paces herself she does ok. The bladder issues continue, but for now we are on timed voids with bladder scans again. She is voiding about 700 then having residual with that, but not enough to start cathing again. Hopefully with the increase in her meds we made last week and yesterday this problem will stabilize too and we can hold off on cathing again for awhile.

Maya continues to be a trooper and happy as usual. I told her went I stepped out to use the computer the other night that I'd be "back in a flash". She said she didn't want me "back in a flash", but "back in her Mama". She thought I was coming back as Flash and not myself.

Thanks for checking in. Thanks for the guestbook notes, they are so uplifting when I come in to check her site and see the notes left.

Holly

Wednesday, September 20, 2006 4:18 PM CDT

UPDATE!! Last night after we'd settled in for the evening Maya's arm started to swell and become red. We weren't able to use her picc and about midnight she had a line study. There is nowhere else to put in a PICC, but this line isn't able to handle the meds and TPN she needs right now so we are currently deciding the best action from here. There are risks to placing a new line at this point and just reinfecting, but she can't go without vascular access either. Just from the little changes we made to get throught he night her BUN is elevated which means she isn't getting enough fluids. Her bili, lypase, and amylase are now also elevated which may explain why today her abdominal pain is creeping back too. So far the toradol is doing the trick for that though. Will continue to update as I know more.

Maya is showing signs of improvment today more than we've seen in the past week. She is up and playing and even took a walk with her nurse this afternoon. Today's the first day we've not needed to medicate her with extra pain meds and she's doing really well managing her pain otherwise. She continues to have nausea and retching, but we've added another med that seems to have this better controled then just with the zofran so hopefully we have handle on this issue too.

This morning she went down for an echo and there were no signs of vegitation on any of her valves. She'll also be seen by optho to rule out any fungal infection in her eyes that may be causing the reoccurance. In case you weren't aware she was still on IV meds for fungus when this cropped up this time. There were also some other adjustments made and we started her on a cath schedule to keep her bladder empty more regular and help protect her bladder and kidneys more in the long run. Needless to say she isn't pleased.

Not too much else. The teacher came today for school in her room which she really enjoyed. Otherwise it's been quiet. Thanks for checking in on us.

Holly

Tuesday, September 19, 2006 11:24 AM CDT

Maya finally had her line pulled about 8pm last night. They pulled the line and placed at PICC for now and we will now try to get some negative cultures. They did increase her anti-fungal dosage to help with the infection also. She continues to have significant pain in her belly, but seems to be doing ok. The CT of the abdomen was ok. CT of the chest did so a nodule and also some inflamation so we have to follow up on that. We are trying some new meds today and going to see infectious disease and urology later today. GI came by this morning and we set up a plan for where we are going with her feeds after things settle down.

Thats about all for now. I'll try to update later when I know more. Thanks for checking in.

Holly

Sunday, September 17, 2006 9:16 PM CDT

Not too much new news today. Maya now has a few more positive cultures, but these are for yeast. One is peripheral and one central. She's been on the antifungal since we left here last admission and still had a few weeks left so I'm not sure what the thoughts are going to be from infectious disease tomorrow as far as a plan. As for now she is still having lots of belly pain, but this is controlled with morphine and toradol. She's also getting visteril and zofran for nausea. She had a really good four hour stretch this afternoon and was sitting up in bed playing quietly with her Hello Kitty and painting, but they began having pain again. They did some more cultures today from her line, peripheral, stool, and nasal so we'll see if they show anything.

I'll update tomorrow as I'm sure we'll have more of an idea what is going on and a plan. As far as a Maya funny I thought you'd enjoy knowing she told the nurse today that she wasn't happy with the man talking from the ceiling because he keeps forgetting to say "your welcome". The nurse then told her she'd let him know to mind his manners and also let Maya know his name was David so now when she turns on her call light she says, "David...My pump is beeping" or "David...I need my nurse" She's so funny sometimes.

Thanks for continuing to check on us.

Holly

Saturday, September 16, 2006 12:11 AM CDT

Maya was transfered to Children's last night. We got here in the early morning hours and came by air. Maya did well on the flight and is doing well this morning. She is growing MRSA in her line along with coag neg staph, but this doesn't really expain all the GI issues and pain she's having. She's also having headaches which are new for her. We've continued with Tordol and Morphine for pain and this seems to keep it under control for her. She's more awake and perky this morning so we'll se what the day brings for her. Her liver remains enlarged, but lab wise things are improving. We gave her a couple of units of blood the other day which made her feel lots better as she was getting pretty anemic and tachy from that.

I'll continue to update as I know more. For now we are on IICU, 4-west. Room 477. I'll update the contact info at the bottom next time since I didn't bring the number with me down to the computer. Thanks for continuing to check in.

Holly

Thursday, September 14, 2006 3:03 PM CDT

UPDATE! Sorry I forgot to tell you which hospital she is in! She is in La Crosse for right now, but may be transferred to Milwaukee depending on what the pediatrician thinks tomorrow when the results are in from the tests. Info is below.


Just letting everyone know that Maya was admitted on Tuesday night. She was running a fever, had a high heartrate, but low blood pressure. Cultures came back positive yesterday for a gram positive bacteria. She is third spacing pretty bad and is very puffy in the face and eyes. The x-ray came back with an enlarged liver as well, but the liver enzymes, while elevated, aren't that elevated to indicate serious issues with her liver. She had a CT today so hopefully that will show more concerning her liver. Please keep the two of them in your thoughts and prayers.

Karla

Saturday, September 9, 2006 2:25 PM CDT

Still no modem, but I thought I'd give a brief update while I have the chance. Hopefully this week I'll have the computer back and can get back to every other day or so updates again. I have lots of pictures to share from the past month or so too.

Maya did start school on Tuesday and has gone for three days this week. She had her nurses with her when she was at school which when really well and she did really well handling three hour days. Most of her day is specials and therapy which works well since she gets homebound services in the afternoons three days a week too with Mrs Kevin. This year she'll get to have music and art for the first time since she's been in school and she's thrilled with the experience. She can never say enough about school and the time she spends there.

Medically she's doing pretty well. She remains on the antifungal IV meds for her infection until the 23rd and this is causing some issues with her kidneys. She's having trouble with fluids and we are needing to give her lots of extra fluids daily. She's getting an extra liter and a half of fluid in addition to her two and a half liters of TPN to keep her hydrated right now and we are hoping to get her BUN down this week. It went from 23 to 41 last week and her normal is more like 13 so we are keeping a close eye on that. Next week she's due for her IVIG again and we are going to be going back to Milwaukee soon to see GI and her Dr Sniggledoodle. This week she's off to Mayo Tuesday for an eye appointment and then in to peds on Wednesday. Hopefully school on Monday, Thursday, and Friday.

Life remains busy, but full. Maya is thriving and doing wonderful with her schoolwork. She's starting to read some and begining to graph with her class in math. What a joy to see her learning!

Thanks for continuing to check on us. We'll hopefully be back online soon.

Holly

Monday, September 4, 2006 10:39 PM CDT

Sorry if anyone has been worried! Holly still does not have a new modem. Supposedly it has been shipped, but she hasn't seen it.

Maya had her IVIG last week, which went well. She also received blood while she was in. She has had a nurse come to the house and do dressing changes and blood draws for labs. She continues to need adjustments to her TPN, but overall she is doing okay. Labs still indicate she is dehydrated regardless of the huge amount of fluid she is getting. She caught Holly's cold too. There were cultures drawn on Friday and so far nothing has grown.

On Saturday, Holly and I went out to some rummage sales. Maya was very interested in everything that Devin got, in fact I think she liked his stuff better than her own! Devin got a magic wand and he started pretending that he could grant wishes with it. He asked Maya, "If you could have any wish in the world, what would it be?" to which Maya replied, "I wish I had your magic wand!" She is so absolutely hilarious!

Tomorrow is Maya's 1st day of 2nd grade! I think this will be the first year she has actually gone to school on the 1st day. There is a nurse who will go with her to school everyday, so hopefully that will ease some of the problems and worries of sending her by herself.

Please continue to keep the girls in your prayers!

Karla

Saturday, August 26, 2006 9:21 AM CDT

Busy! Busy! Busy! That is pretty much the story of our lives right now. Maya is doing fairly well although her tummy isn't cooperating and we haven't been able to give any feeds at all. The other day we tried to start her up at 3cc/hr which is less than a teaspoon an hour, but she became bloated and wretchy so we had to stop after a couple hours. I guess her body isn't ready to do it's job yet. We've been to the clinic for labs on Monday, Wednesday, and Friday and are following them closely since the antifungal she's on affects how her kidney work (or don't work). We've made several TPN adjustments and have had to give her quite a bit more fluids than she's use to getting too. Friday we saw the doctor too and discussed school and also where we are going with things at this point. Monday she'll go in for IVIG and by the looks of it she may need blood by that point too as she steadly dropping her hgb/hct.

I currently have no computer access since my modem bit the dust so I'm dog sitting and using the computer this morning. I'm pretty much healed from my surgery with the excepting of some remaining pain and issues I'll go in for this week. They'd like to remove my gall bladder soon, but we'll see when we can fit that into the schedule, LOL. Right now I have a lovely summer cold complete with fever, cough, congestion. It is very pleasant...let me tell you. Maya's schedule with meds right now is busy and because of the stability of her one IV med we are getting daily deliveries from homecare. That keeps us at home much of the time, so hopefully I'll heal faster that way too.

Thursday night we did get out to see Sesame Street Live!!! Maya LOVED it and sang along, clapped and was basically captivated by the entire show. So good to see her having such a good time and doing something fun. School starts the 5th and she's looking forward to that too. We are working on nursing for the school year, but hopefully we'll get that worked out this week.

Thanks for checking in. Hoping for a modem this weekend and I'll update again and add pictures.

Holly

Friday, August 18, 2006 8:56 PM CDT

HOME!!!!!!

We got home this evening after a couple near misses with staying yesterday. I wasn't sure we'd make it today, but we did and here we are. There is always so much to do when we get home that I never know where to start.

Maya is doing well. She has her new Broviac in and it's less sore today so we're healing well from that. She also had her bone marrow biopsy done yesterday and a holter monitor so we are waiting on those results along with some others that were sent out to other hosptials.

I have to go get meds, TPN, and antibiotics moving for the night, but wanted to let everyone know we are here and hoping to be here for awhile. I'll try to update again soon.

holly

Wednesday, August 16, 2006 1:57 PM CDT

Well, we thought that maybe we'd be going home yesterday, but on Monday things changed a bit. The plan is now to place her new broviac before going home. Since she's now had negative cultures with the new PICC line the plan is to do that tomorrow along with a bone marrow biopsy. The bone marrow biopsy is a follow up on the one hematology had done back in March and to complete some testing they were needing.

Maya is doing well and had continued to be fever-free all week. She's having some fluctuation in her heart rate and labs, but nothing too bad. Today she had another renal ultrasound to check on the hydronephrosis they found last week (enlarged kidney's), I haven't heard the results from that yet. She also had an u/s of the thyroid to measure the nodule growing there and yesterday and u/s of the vessels in her chest and neck to see what vessels are open for new lines. All her CT's earlier in the week were at her baseline so nothing new there either. Basically she's doing very well and we are on the road to recovery and going home. Hopefully by the beginning of next week! She'll remain on anti-fungals for this infection until September 23rd then she'll be completed with treatment for this infection.

Maya is entertaining herself and everyone around her as usual. She is enjoying talking to the "nurse in the ceiling" (the call light system) and "teaching the doctor" how to listen to her. Thanks for continuing to check in on Maya and we'll update soon.

Holly

Sunday, August 13, 2006 3:07 PM CDT

Maya continues to improve since the placement of her new line. The day they removed it her cultures were growing yeast from both lumen and from the peripheral site so it was more than time enough for the line to go. Right now yesterday's cultures remain negative and that's how we are praying they remain. As long as we continue with negative cultures we should be out of here this week. Her treatment for the bacterial part of her line infection is finished on the 16th which will eliminate two antibiotics (or 7 doses/day) of meds and she'll just be back on her IV Protonix and her IV antifungal. The antifungal she'll need for at least 6 weeks. She's also remain on a number of different IV fluids which is not a lot different than what we were doing prior to her being admitted. We've made some other changes to her meds, but pretty much we are just waiting on those clear cultures. Monday she'll have a head CT to make sure there is no fungal infection in the brain, but that is about all she has left to go to make sure things are ok for now. There is no guarantee this is it with the infection, but we are as close as we've come to getting a grip on it this time and everthing looks good right now. Her vitals are all back within normals except for her blood pressures which are on the low side. She's had enough of being in the hospital...at least I hope that is all her behavior means. Usually she's so good about cooperating and doesn't cry much, but the past two days she's been really teary and not so cooperative. We'll see where that leads.

We had visitors this weekend which was a welcome change of pace. One even brought our van so when we get the green light we have a way home. Maya has also enjoyed her e-cards...thanks. They deliver them in the afternoons and she gets excited when she sees the lady at our door.

Thanks for checking in on us and continuing to support us with your thoughts and prayers, we appreciate every word.

Holly

Friday, August 11, 2006 11:57 PM CDT

Maya had a new PICC line placed today. Her heart rate is high, she is running a temp, and was pretty sleepy overall today. She got blood yesterday. The hope is that with the infected PICC line out, they can get ahead of the yeast and bacteria to become infection free soon. Maya will also have scans to see if the yeast has spread into other areas of her body. Please pray this yeast can get under control soon.

Karla

Tuesday, August 8, 2006 1:15 PM CDT

If anyone wants to send Maya a card, you can go to the Children's Hospital of Wisconsin site and click on send a card in the top left corner.

Karla

Update!! Not a lot new to report except Maya spiked a temp again last night and is now growing both yeast and gram positive bacteria in her line and peripherally. ID came in today and ordered some new testing, but feel it is due to translocation of bacteria from her gut. The decision currently due to her lack of peripheral access is to use this PICC for a few more days and see how things go then make a decision. Urology came today today, but no recommendations as of yet. Thanks for continuing to stay with us on this journey, I'll update as things change.

Where to begin??? First off, we are NOT at home, nor were we able to be transfered back to LaCrosse. Sunday night Maya began to show signs of infection and then spiked temps in the 105 range. She quickly became sicker and within 12 hours her cultures were again growing yeast. Since then they are also growing a gram positive bug from her peripheral site so now we are nearly back to square one with her. For now they are keeping the PICC line in and waiting on infectious disease to weigh in on things. The thought is she is translocating her bacteria and yeast from her gut although they scanned her head to toe, did an echo to look at her heart, and an ultrasound of her old sight yesterday. She's stooling a lot and putting out lots through her g-tube also so it is more typical of one of her pseudo-type flares she gets with infection or other metabolic stress. She's acidotic so we are trying to correct that and she required quite a bit of extra fluids yesterday. Today her heart rate is back down in the 130's which is more acceptable than the 180's where it liked to hang out yesterday and she is breathing much easier and slower so it's good to see. She's also much more responsive and interactive so again we are over the hump I'm hoping. Temps are more in the 101 range which is better too. They increased her Ambisone (antifungal) dose by almost double and hopefully that will do the trick on the yeast. We know her body lacks the ability to fight this due to problems with her t-cells so we need everything to start working for her now. Yesterdays scans also showed some hydronephrosis (enlargement) of her kidneys so we are keeping an eye on this too along with her ability to void which is is having some problems with.

Wow! What a difference a day can make. I should get back to her now, I left her watching Clifford and playing with her train so she's going to notice I'm gone soon. Thanks for continuing to check on us, pray, sign the guestbook, call, etc.

Holly

Friday, August 4, 2006 3:02 PM CDT

Update::
I don't have much new to add so I thought I'd just add a brief update. Maya was up most of the night so it's going to be a long day...for me anyhow :) She's feeling well except for some tummy pain but we are still planning on a Monday discharge. She's having lots of output so feeds are on hold right now. Everyone's been wonderful in regards to her care. She's been on 4-west since we got here and the care from the everyone has been great. I'm so thankful we've had the chance to be a part of the special needs program, it makes communication and planning/performing her care that much easier.

Last night was a good night for Maya. She slept well and slept long which was a welcome relief. She's doing well with her PICC and after talking with ID it's been decided that for multiple reasons including the fact she was on yeast prophalaxis when she got this yeast infection we are going to have to treat with ambisone for 6 weeks and then treat the enterococcus for 14 days so we'll be doing antibiotics at home for quite awhile. Not sure where this will put the placement of her new broviac yet, but praying her PICC holds out until then. Today she is getting her IVIG, but she's tired from that, but doing pretty well. She's with the art lady now making something and yesterday had a visit from Nutmeg the clown and childlife. She started stooling lots today so feeds are on hold for now with a plan for a slow start when we do get to that point, but still planning on a Monday discharge (crossing fingers!) Not sure how we are working out the ride home yet, but we're working on it.

The staff and doctors here have been really good about working with Maya and taking care of her needs. We are so blessed both here and home with such good care.

Not too much else new today to report. Hopefully the weekend will be status quo and we'll be home soon. Thanks for all the guestbook notes and continued prayers and support.

Holly

Thursday, August 3, 2006 12:12 AM CDT

Yesterday Maya went down for removal of her broviac. The surgery went well and they placed two peripheral sites to get her through until today when they were to place her PICC line. The plan was good, but the lines didn't last until this morning and they couldn't get another line in. By the time they took her down for her PICC placement she was having difficulty with her blood sugar, etc and had been off TPN, and all IV fluids too long so they ended up having to place her PICC with no sedation since there was no IV access to be found. After a couple hours she's back in her room with a new PICC line. She was such a good girl, I'm so proud of how she handles herself even though things don't go the way they should for a seven year old. Hopefully the plan from here is to finish up antibiotics for her enterococcus infection along with treating her yeast that was growing out of the line then place a new broviac. She's really done quite well through this whole infection so having caught things fairly early and treating aggressivly made a big difference. She's still off her J-tube feeds and is on multiple antibiotics. The plan is to do her bone marrow bx with her new line placement and get that out of the way too. Always like the two birds with one stone deal!

I'm doing much better too. Tired most of the time, especially after a fairly rough and sleepless night with Maya last night, but the pain is improving and I'm able to eat and drink some with fairly well controled pain so we are moving in the right direction. I have have a lot of back pain, but the surgeon felt it was secondary to adhesions from the surgery and may just be the way things stay. Who knows....at this point I don't care, just can't way to get home and return to "normal"....whatever that is!

I will never be able to say thank you enough to everyone for all the love, support, care, etc Maya and I have received this past month. We have so many very special people caring about us and taking care of us in every way possible. God had truely provided for us in ways we never imagined. Thanks also for the continuing encouragement in the guestbook and the phone calls...keep it coming we love hearing from you and the road is often long.

Glad to be back.....
Holly

Tuesday, August 1, 2006 11:29 PM CDT

Maya was transported to Milwaukee this morning. She is going to have her port removed tomorrow and a PICC line placed on Thursday. She will also have a scan that will show if the yeast that is growing has spread to her kidneys, eyes, and heart. Please pray that the yeast will get under control with the antifungal medication she is taking. So far it has not, but hopefully with the port removed, it will soon. Maya's body does not fight off yeast, so the medication is the key.

Holly is doing about the same. She has been able to eat small amounts of food. She is still experiencing lots of back pain, but I really wonder if it is more from how she has been holding herself the last few weeks.

Hospital info is on the bottom of the page.

Karla

Monday, July 31, 2006 8:36 PM CDT

I know all of you are curious on how things are going, so here's an update on the girls!

Holly was hospitalized over the weekend again. She was in lots of pain and had some other GI issues that were causing lots of problems. She had a colonoscopy and endoscopy today, as well as a biopsy of her small intestines. She was released this afternoon and is back in Maya's room with her. Hopefully things will turn around and she will be able to eat and drink better soon.

Maya is still having positive cultures and now has yeast as well. She is feeling pretty good though and is happily playing in her bed. She hasn't had any more spikes in her temp lately either.

Thanks for all the support and prayers!

Karla

Friday, July 28, 2006 11:45 PM CDT

Finally an update....Maya is growing 4 bacteria, 3 gram postive and 1 gram negative: entrabacter, entercoccus, staph, and strep, which obviously came from the bathroom floor at school. Fungal cultures are still being watched closely, and in the meantime, they have started meds for that as well. She spiked temps all day yesterday, and today started well, but by afternoon, she had spiked a temp again. In true Maya form, she is keeping herself entertained with lots of crafts, stickers, puzzles, etc. The doctor told her she needed to rest last night, and she told her in her polite Maya way, "No thanks. I don't want to rest today." When I asked her later to rest and have a nice night, she thought it was much better to rest with her eyes open. LOL

Please keep the prayers coming! I know Holly and Maya appreciate all the thoughts and prayers!

Karla

Tuesday, July 25, 2006 8:56 PM CDT

Things just continue to get worse....

Maya was admitted last night with a line infection. She is testing positive for both gram positive and gram negative bacteria in both of her lines and in her blood. They suspect this happened because of an error the school made when Maya's line came undone in the bathroom at school. So not only is Holly not feeling well at all, now Maya is starting this battle all over again. Please pray for healing for Holly so that she isn't feeling so much pain, can eat and sleep, and for strength. She saw the doctor on Monday and had her antibiotics switched once susceptibilities came back for her UTI/bladder infection. And of course pray Maya's infection is easily treated.

Karla

Sunday, July 23, 2006 9:46 PM CDT

Holly was having increased pain and was very dehydrated, so we brought her to the ER on Saturday morning, and she was admitted overnight to give her fluids and pain meds. She has a UTI/bladder infection as well. She went home today with some meds and hopefully she will start eating and drinking more on her own. She will see the doctor tomorrow for some labs and on Tuesday she will have a follow-up with her surgeon.

Maya is doing wonderfully! She is enjoying all the attention from everyone. Yesterday, they had a birthday party for one of the children at the respite house, which Maya is still talking about. Today, she had plans to paint the nurse's toenails. LOL! She is so darn funny sometimes!

Please keep the prayers coming!

Karla

Tuesday, July 18, 2006 12:55 AM CDT

Please sign the guestbook today and wish Holly a HAPPY BIRTHDAY!!!!

Tuesday, July 18, 2006 12:51 AM CDT

Wow! What a week. I'm finally getting to the point I can get on the computer again and start to catch up. It's slow going here, but I'm getting there. I really didn't think that this would set me back so far. I see Karla and Maya kept you updated well in my absence. I am slowly recovering, but did have to make a return visit to the doctor yesterday just to check things out. Right now things look ok, but there is some fluid they are keeping an eye on in case they need to drain it and some drainage from my incision.

Maya is enjoying being back home from respite (which has been a wonderful place for her to get to spend time with nursing care, playmates, CNA's, and plenty of TLC) and getting settled back in. We've had some extra nursing help this week which has been wonderful and lots of help from our friends. It is amazing to see all the people who care for us. With this help things are going smoothly and we're back on the road to recovery.

Maya's not been feeling too well the past couple of days. I'm hoping it is just the heat and nothing more, but we've had to decrease feeds and restart some meds. I touched base with her docs in Milwaukee today and we'll see the pediatrician on Thursday so hopefully it will turn out to be nothing much. Once again...we'll see what happens.

Thanks for continuing to check on us. I appreciate all the messages in the guestbook and the cards, visits, and prayers.

Sunday, July 16, 2006 3:20 PM CDT

Hello everyone. Sorry for not giving an update yesterday. Holly is doing about the same. She is still having lots of nausea and pain, which makes it hard to eat and drink very much. Nana left for home yesterday. I spent the afternoon at Holly's yesterday, getting the house cleaned up and helping with Maya's meds. Today, Holly's friend Karen from church stopped by and took Maya to respite for a couple hours so Holly could get some rest. It has been hard for Holly since she is so used to taking care of Maya, but with time her strength will return. In the meantime, I think there has been many blessings from all of this. It has brought Holly and I closer. She does so much for so many people, that it has been nice to help her out. Maya has spread her sweet "Mayaness" to many more people that she has touched at the respite house. Holly's church has shown such care to both Holly and I by helping out any way they can. When Holly went into surgery, I had 6 people from church there with me...what a blessing that was. Maya has done wonderful through all of this and continues to be such a joy to everyone.

Friday, Maya had her IVIG, which is to help boost her immune system. It went very well. She will continue to receive it monthly.

Please continue to keep both of them in your thoughts and prayers. I know they are working!

Karla

Friday, July 14, 2006 9:56 AM CDT

Holly came home yesterday! She is feeling a little better, still sore and very nauseous though. Today they are back in the hospital for Maya's IVIG. This will give her a chance to rest some more too. Nana is staying through tomorrow. So far, the nurses are able to come in at night to do Maya's meds and IVs. We are working on more help during the day for Holly. Meanwhile, I will help out too. Continue to keep them in your prayers for healing.

Karla

Monday, July 10, 2006 3:01 PM CDT

Wednesday night update!
Today was a MUCH better day! Holly got her catheter out, her IV out, and seems to be feeling a tiny bit better. Looks like she will be going home tomorrow sometime. Maya will be back on Friday for IVIG at the hospital, so Holly will be able to also rest while she is there. We are now working on getting help lined up for when she goes home. Continue to pray for healing and for Holly to get some rest.


Wednesday Update!

Holly was moved to another room yesterday afternoon. It's on the pediatric floor. At least she feels right at home! The surgery floor was full, so if they have room on peds, they often send women over there. Updated hospital info is at the bottom of the page.

Holly was still in a lot of pain yesterday. She had a scan to check the flow through her gallbladder, liver, and something else. There is sludge in her gallbladder and it may need to come out in the future. This morning she was feeling a little better, so keep the prayers coming for pain relief and healing.

Karla

Hi everyone, it's me Maya! It's my turn to write this time! Oh dear, oh dear, my mama is in the hopisal. I think she was tired of me getting all the attention. On Friday, me and Mix Karla took her to the doctor, but he sent her home. Mix Karla and I had lots of fun playing toys while we waited. Mix Karla was trying to get used to all my tubies and when she went to put me back in her van I told her she better get with it lady!

My nurse Tess was so nice to come over on Friday night to hook me up. There's lots of work that my mama does and she just didn't feel very good. Mix Karla stayed over night to help Mama, but I don't think old sleepyhead was much help! Mama couldn't sleep so she got up to change me in the middle of the night and she took a bath. Mix Karla slept through all of it!

Mama was still feeling very yucky Saturday, so me and Mix Karla took her to the doctor again. I had so much fun counting my monies when she was in with the doctor. Mama was sent to the ER, but wanted to stop at some garage sales along the way. Mix Karla told her to shut her eyes so she wouldn't see the signs!

When we got to the ER, Mama had to go with the doctors to see why her belly hurt so bad. My pastor John came to visit me while I was waiting! I thought that was very nice. He even played with my monies too. I sure like to count all my monies!

My nurse called and so I said goodbye to Mama and then went with Mix Karla to her van. I decided that I would just wait in the van for Mama...for some reason Mix Karla didn't think that was a good idea! Darn lady! She convinced me that I would have so much more fun playing with my nurses, Dena and Tess. I am so lucky to have such cool people to take care of me! It was raining really hard when we got to my house. I was a little upset that 1 inch of my elbow was getting wet. Don't know why the fact that Mix Karla was soaking wet was any reason for me to get out of the van fast. Boy, the pressures on a princess.

Mama had a CT scan and the doctor saw a big owie in her tummy. It was really fast and Mama was up in surgery. She was sleeping for a very long time...like 3 hours. Can you believe that the doctor found this in her tummy?!?!?!?



I am still trying to figure out why Mama would swallow a basketball. Didn't she know that would hurt????

Not only did Mama have a basketball sized thingy in her tummy, she also had a big blood clot that was giving her a really bad tummyache. I am so happy the doctor took them out. I don't like when my mama has owies.

Mama is feeling really, really owie. I went to see her today though and I think my snuggles made her feel better. Nana and Papa picked me up and brought me to the hopisal so I could see my mama. Here are some pictures of us together! Mama wanted her hat on since she thought her hair looked yucky from lying in bed for so long! Silly Mama!





Mama has this funny thing in her nose to help her breathe and an IV in her hand and 2 brakeslets just like I do when I am in the hopisal! I was trying to be so brave and not cry when I saw Mama. Mix Karla always says I am the biggest, bravest girl in the WHOLE world!

Please keep Mama in your prayers so she gets better and can come home to take care of me! I am sure having fun though with Tess and today I got to see Miss Donna my nurse too! It's lots of fun playing with them. They even liked my monies and my really cool puzzle of the United States.

I am going to see Mama tomorrow too, so I will let you know how she is feeling. Please send lots of love and prayers our way!

Love, Mayafly

Sunday, July 9, 2006 0:40 AM CDT

Prayers needed!

Holly was having lots of abdominal pain, so I took her to the emergency room. After a CT scan, they did emergency surgery to remove two masses. They appeared to be benign. She is in a lot of pain tonight. Maya is with a nurse so she is being well taken care of. Please keep both of them in your prayers for a quick recovery for Holly!

Karla

Tuesday, July 4, 2006 5:21 PM CDT

Happy Fourth of July!!!


Maya had a good weekend with Nana and Papa here. It was a short visit, but she managed to squeeze in lots of game time and story time.



We did have a wonderful time and Maya was sad to see them go. She was also very worn out and slept until after 9am this morning. I have to admit I enjoyed that very much :)

Today we just hung around the house. It's been hot out and heat doesn't mix with Maya well. She also has a tummy ache today so we just took it easy. She's played in bed and in the living room most of the day and watched her movies. A little while ago she wanted to go for a ride in the car so we took a little ride, but she got tired and wanted to come home pretty quickly.

Tomorrow is her follow up with the pediatrician then it's back to summer school on Thursday and Friday. Somewhere in there she'll have school at home with Mrs Kevin too. I'm hoping her labs tomorrow start to show some improvments with her liver since we made some changes last week. Maybe it's too soon....I guess time will tell.

Thanks for checking in...I'll leave with one last picture of Maya with her Nana and Papa from this weekend.

Saturday, July 1, 2006 5:17 PM CDT

I can't believe it is July already! We spent so much of the past summer inpatient sometimes I'm in awe of how long we've been home this time. It's been wonderful!

Maya had a great time at school yesterday and then went to respite for a few hours afterwards which allowed me to get some things done. Maya loves to go to respite and she also loves school so that made yesterday a "very, very, very good day" as she told me last night before bed. Today Nana and Papa are going to be here for a visit until Monday so Maya is eagerly anticipating their arrival. The got caught in some rough Chicago traffic so I'm not sure how long it's going to take them to get here. We did lots of errands this morning getting ready though so she's napping now so she can be fresh when they get here.

This week we just have one doctor appointment so with the holiday it should be a nice relaxed week. There is school Wed-Friday and the nurse, respite, home care, going to pick up meds...... Ok, now you see what relaxing is for us! LOL! Really though, I'm hoping it isn't hot everyday so maybe we can go do something fun one day.

Have a great holiday and we'll update Monday with our adventures from our visit.

Wednesday, June 28, 2006 3:06 PM CDT

The butterflies are FREE!!! We set them free last night after the cat began to take a keen interest in them. He would not leave them alone and was even opening doors just to get to them so they were free a few days earlier than we were going to let them. Maya was very excited and gave them a motivational speech before she let them go.



Her speech had something to do with being a family and staying together so they would be safe. She also told them how lucky they are they can fly and someday she too will fly. I have to admit my heart was in my throat on that one.

Monday was also her first day of summer school. She was thrilled to see Mrs Kevin and her friends and had a great time. She brought home a beautiful painting and told me all about counting the stairs for math. She had to miss the last couple of days for appointments, but is looking forward to going back tomorrow.

Yesterday we headed to Milwaukee for her GI appointment. They were so pleased with how good she's doing and how great she looks. They said that although she's only in the 1-3 percentile for height and weight it doesn't really mean anything since height for weight and her BMI is 50% so she's very proportional, just small for her age. It really works for her since she's delayed anyhow so she just comes off as a 5 year old most of the time instead of 7.5. We did change her lipids to every other day to hopefully slow down her weight gain and added some meds for bacterial overgrowth and yeast. She had no t-cell response to yeast so we have to stay on top of preventing any yeast infections. She's set up to start IVIG (to boost her immune system) on the 14th and at that time they are going to further look at some of her liver issues since her liver enzymes continue to elevate and she's having some other related problems. Most of this will be scans and labs, but there is some talk of a liver biopsy at some point too. We'd do her bone marrow biopsy at the same time. Today we saw peds for her TPN labs and visit. Still waiting ot hear, but she looks like she's doing great.

On the way home from the doctor we stopped by the beach to meet Devin and Mix Karla for about an hour and play. Maya hates the sand. She is like a little old lady...complain, complain, complain yet she sits there and digs in the sand happily....that is until the sand touches her then she's off on hating the sand again. Devin was in his glory swimming in the "Mississippi Ocean" again. It's always nice just to get out for a little on these not so hot days.

Thanks for checking in on us.

Holly

Sunday, June 25, 2006 1:12 PM CDT

We came home from church today to find our first butterfly transformed. By the time we'd changed out of our good clothes there was a second. Maya was thrilled to see the changes take place and actually get to watch one break free. We are looking forward to setting them free later this week when they are ready.

We really haven't been up to much else. I've been trying to get things cleaned up and reorganized the past couple of days since they've been rainy anyway. Maya's caught up on her movie watching and sorting. Today we went to church and she had a wonderful time. She LOVES going and is so comfortable with all her friends it's nice to see her fit in someplace.

This afternoon Maya's been telling me stories. Her most recent was about Little Purple Ridinghood and her Mama Big French Fryhood. Do you have to guess what I was eating at the time? She told me all about how they had to run down the "driveroad" (what she calls roads and parking lots) to catch the schoolbus because the driver was "driving them crazy"! She still likes to tell me how I'm a crazy driver all the time so I'm guessing that is where that came from.

Tomorrow she's off to her first day of summer school then Tuesday we go to Milwaukee to follow up with GI. Wednesday it's back to the doctor then school the rest of the week. She's gearing up for her visit from Nana and Papa and has big plans for them. Thanks for checking in on us. I'll update after we get home on Tuesday from Milwaukee. It's going to be a long day as the drive is about 4 hours each way, but it's so worth it to have doctor's who really understand Maya and care about how she's doing. We are hoping to stop by and visit some friends who are inpatient also which is always nice when usually we are limited to talking online.

Holly

Thursday, June 22, 2006 9:24 PM CDT

Butterfly Update! We are still in this state of waiting for our butterflies. I can't count the number of times each day Maya goes in and checks to see if her butterflies "are here yet!" I can't wait to see the look on her face when something has actually happened!

It may seem that our lives have become consumed with the butterflies, but in all honesty we like to watch our mommy robin and our finches at the feeder just as much. Do we sound like a couple of old ladies or what? It is so much fun to just be home and just BE. The past couple of summers we spent inpatient and didn't get to just enjoy being so this has been a lot of fun. This evening we went to the park. Maya and Devin played ball, frisbee, and hide-n-seek. They had lots of fun which by now I'm sure you've figured out Maya pays for later, but I've decided it's worth it if she really can just go be a kid and have fun. By evening she can manage the weight of her TPN and feeds better since they start at 9pm so they are light enough for her to carry easily by 4 or 5 in the afternoon. OK, before I explain this first picture you have to guess if Maya is the "hider" or the "seeker"



While most of you I'm sure said, "of course she's "it, the seeker". Well, you'd be wrong. That is Maya hiding. She's on the same side of the tree we are on and covering her eyes. There is nothing more fun than playing hide-n-seek with her.........unless of course it is playing baseball.



What you don't get about this game was first Maya throw the ball. It either A=goes way to the left or right of Devin or B= goes straight up and back down nearly hitting her in the head. Then the both chase the ball until Devin finally gets ahold of it, throws it up in the air and hits it himself then they both chase it down usually losing interest in their game before the find it and I end up playing baseball with Devin and Karla ends up playing frisbee with Maya...so much for visiting, it was more like yelling across a hill at each other. Let me add that I am much too old to play ball, on a hill, full of holes, I don't roll when I fall and I had to come home and nurse myself with a hot bath and a bottle of Advil (OK, now I REALLY sound like an old lady!) Oh well, we had lots of fun and since Maya didn't get out of bed until 3:30 today it was reallly good for her to get out and move.

Tomorrow the nurse comes for her dressing change in the morning then she goes to respite. We don't have plans for the weekend, but I'm sure we'll entertain outselves. Next week is a big week with 2 doctor appointments, summer school, Mrs. Kevin, and a visit from Nana and Papa (Maya doesn't know about that one yet).

Thanks for checking in.

Holly

Monday, June 19, 2006 3:50 PM CDT

I hope everyone had a good weekend. Not much going on here this weekend, we just laid low trying to stay out of the heat and tried to get Maya feeling a little bit better than she was last week. From the looks of things we might have accomplished that to some extent. Mostly she just played and sorted her toys. I can't exactly figure out what she was doing, but she stays happy doing it even though it creates a bit of a mess. Whatever! It must be fun for her!



As far as her "babies" go. The Mama bird is still sitting tight and we have no little ones yet, but the butterflies are amazing. They grew so fast you could see it happen.



The second picture is them as they attached themselves preparing to spin their chrysalis. That appears to the todays project as they are nearly done. I'll get Maya to take a picture later so we can add it soon. She's been so fascinated with the whole process it's hard not to get caught up in it with her.

On the medical front we woke up to her needing a new GJ tube so we headed in the morning to interventional radiology to have that replaced. Maya is so patient and so good when they do this. She just lays there and sings or puts her hands behind her head and crosses her ankles while they mess around trying to get the darn thing threaded through her stomach into the jejunum. After that we headed over to peds and she saw the doctor there. her labs weren't as nice as they've been as her liver numbers are working their way back upwards. We've also been having some problems with her sugars again so we are watching that closely since they've been dropping into the 60's. She is gaining weight like a champ though so we are cutting her fat calories again this week.

Maya has the rest of this week off from MD appointments then we have several over the next month. Thanks for checking in on us.

Holly

Thursday, June 15, 2006 6:13 PM CDT

Not too much new here. Maya's caterpillars are getting bigger by the day and she enjoys watching them several times a day. I'm not real sure what she's watching as most of the time when I look in the container it takes a lot just for me to believe they are alive, but they do change positions and get bigger each day so we continue to watch. They are spinning silk now so we are expecting they'll start their chrysalis soon. I'll try to get new pictures of them on tonight. On the Mama bird front she is sitting pretty and doesn't move for much of anything so I'm thinking we'll have babies some time next week. Maya likes to go out and talk to her and reassure her we are here and that when we leave we'll "be back soon, don't worry". It's basically the same lecture she gives Pookie when we leave.

Yesterday was her appointment with her pedi and that went well. Her labs looked pretty good so we are pressing on. She's been dumping a lot out of her g-tube and many times over a liter a day so in addition to replacing the fluids we are going to decrease her feeds to see if that helps things out. She's also been really itchy so we changed a few meds around seeing if that will help not only all her sleepiness, but also her itching. We did finally get all her skin on her chest cleared up so that's been a relief since she doesn't dread her dressing changes so much.

Not to much exciting happened Tuesday. We played with the frisbee and went to see a movie with a friend. The movie wasn't too good, but the company was great so it turned out to be a nice afternoon. It is always nice to get out.

Tomorrow Maya's with her nurse most of the day so she's looking forward to lots of playing (and getting her hair washed...ok, maybe that's me looking forward to someone else having to do that). I'm looking forward to running errands without hearing "clean-up in aisle 9" and realizing it is my daughter's g-tube that leaked in aisle 9..and 10...and 11. Yes, that really does happen, not my favorite outing I might add. This weekend is the airshow, but it's suppose to be really hot out. Maya loves the military aircraft so we'll go watch them fly anyhow even if we sit in the airconditioned car. That's one of her favorite parts of the summer.

Thanks for checking in.

Holly

Monday, June 12, 2006 10:13 PM CDT

First of all today our Mommy bird came back to sit on her second batch of eggs. Maya is so excited she'll soon have a new brood to watch over.

Our other exciting news is Maya's other "babies" arrived. Maya loves butterflies as most of you know and this year one of her nurses from the clinic got her a butterfly kit. You send away for caterpillars and then watch them through their various stages until you are able to have butterflies to set free. Maya must have watcher them for over an hour after they arrived today.



This afternoon it was still really nice out and not too hot so Maya decided she needed to work on her frisbee skills some more. I had to make it more challenging for her today so we had a target. When she'd loop the target she'd do this funny little "happy dance". It was so cute.







As you can see there was a lot of cheering on her part!

Medically speaking not too much has been going on. We've been trying to slowly increase her J feeds and continue to vent from her G tube. This evening she started in with lots of belly pain and was asleep around 5:30 distended and miserable so I'm not sure what thats about. She had such a good day too. Last night she broke out in hives and she's been really itchy so maybe it's related?! Who knows...you think I'd learn to quit trying to figure her out. We head back for labs and the doctor on Wednesday, school with Mrs Kevin tomorrow, and nothing else too exciting this week.

Thanks for checking in.

Holly

Saturday, June 10, 2006 6:42 PM CDT

Today was nice and cool out so after Maya managed to drag herself out of bed sometime after noon we headed to the park. First thing she wanted to do was swing. It was hard to balance with her backpack, but she loved it.



Of course she needed to play frisbee, her game of choice.



She's actually getting quite good and "tricky" as she told me. She was even trying to toss it under her leg which is a challenge since she can only stand on one leg for about 2 seconds!



After the park we went down to the river for a little walk. Maya had gotten a stroller for pushing her pumps around when she's too tired to carry them. At times depending on what is running they are really heavy to and she just can't carry them. Anyhow, she had to bring her baby to show her the sights.



Before we left we stopped to feed the ducks. Maya loves the ducks and was quacking and quacking back to them. I think they were as amused as I was.



That was our day in pictures. There are a few more on the photo page too. Hard to believe she was only out of bed for five hours today. I haven't gotten use to how much she's laying around and resting lately, but her up times are really up so it's good to see her playing and happy so all the rest is worth it in the end. I guess this is just how her body is working things out right now.

Thanks for checking in on us. Hope everyone is having a good weekend!

Holly

Wednesday, June 7, 2006 9:35 PM CDT

UPDATE: If you happen to be visitor number 100,000 (see counter at the bottom) please sign the guestbook and let us know! I added a few pictures to the photo page today too so take a look.

Nothing like spending a beautiful summer's day at Club Med! Really it wasn't so bad, they have cable, air conditioning, and food delivered right to your room. Besides, we got to come home after 9 short hours so I should complain....it's better than 9 weeks! Maya had her regular peds appointment today and was suppose to get an iron infusion while she was at the clinic. While we were waiting on her iron her hgb came back and she ended up needing two units of blood too so we headed over to the hospital to get those along with the iron. It was nice to catch up with all our nurses again and they always take such good care of us so it really wasn't so bad. The rest of her labs were not too bad either. Her BUN is down and the liver numbers are coming down although they are coming down slower and are still elevated. Things are definately heading in the right direction though.

Today Maya's sore throat was better and she didn't have a temp for the first time in a couple of days. She's still feeling kind of punky, but I'm hoping the blood will help with that. Yesterday she had school with Mrs Kevin and really seemed to struggle with everything she was trying. She couldn't focus, had trouble seeing, and really couldn't think clearly at all. She's been real teary and just low energy too so I think all this will improve now.

On to the fun stuff.....the other day Maya tried to convince me if you plant a rock, a bush will grow. She's very convincing so needless to say there are several rocks in the dirt outside our windows. I'm hoping she'll forget about them so I don't have to explain why we still have no bushes. She's also taken to telling me, "your driving is driving me crazy!" Just because I may have turned a couple of tight corners and put on my breaks too fast when I saw the 'garage sale' signs on the side of the road! I never thought that would be me, but I'm that lady in front of you who you say nasty things to because she's either driving too slow looking for the sale or driving eratically when she finally finds it. Oh well, I like a good bargain.

Thanks for checking in on us.

Holly

Sunday, June 4, 2006 8:25 AM CDT

UPDATE!! I had to add this little update because I am usually the first to whine when other people update their page with pictures, graphics, etc and then don't update their journal, LOL! It's like you get yourself all set for an update only to find the same one you already read. OK, so I have issues...most of you already knew that!

Maya didn't have such a great day today. She was ok this morning although she had a lot of pain this morning with her dressing change. We are using a new cream trying to help with her skin breakdown. She's also been complaining of a sore throat and cough today along with having a temp. My normally active little butterfly has been in bed since 3pm. Hoping for a better day tomorrow.


First off....Happy Birthday DAD!!!!!!!!!! You are a wonderful Dad and Papa we wish we could be with you today.

I really thought I had updated since Wednesday so let me catch up. Thursday was Maya's fieldtrip and she had a wonderful time on the boat. I was informed I'm no longer allowed to call it a boat, but rather it's the LaCrosse Queen. She's so funny when she learns something. That afternoon she was really tried from such a fun and busy morning, but she made it to the dentist and once again was cavity free. Things looked good and right now we are just going to watch things. There is work to be done on the bottom, it's just a matter of timing for pulling things, etc.

Friday was her last day of first grade. I told her I was taking a first grader to school and picking up a second grader. She asked me when I'd be picking her up and why I was picking up someone else instead of her. LOL! Once I explained she was finishing first grade she was fine. They had an assembly which she is still talking about because as she shouts at me daily, "it was TOO LOUD!" I guess she sat there with her finger in her ear and folding her ears in. Oh well, that's my girl. I actually am so use to her doing that with noise it is one of those things I find endearing about her. We also found out Friday she'll be getting some summer help from Mrs Kevin. I think this will really help her stay where she is and not lose ground this summer. She missed so much school this year hopefully this will help.

Yesterday we celebrated school being out and Maya having a really good day. She hasn't had one of those in a while. In the afternoon we went down to Riverside Park and she played "frisbee" I use the term only to describe the object she was playing with since her version is one of those "Maya things". It was getting warm so we went and put our feet in the fountian and splashed around in the water. The water was freezing, but the kids didn't even notice. The kids played there forever, my feet lasted about 5 minutes before I lost feeling in them! I kept waiting for Maya to topple in, pumps and all, since she kept leaning forward and splashing with her hands too. We survived though. Then Devin, Jakey's brother (www.caringbridge.org/wi/jacobdavid), decided he needed to get in the "ocean" or the river as it is better known to the rest of us, so we drove over the bridge and found a little shady beach where he could get in and play. Maya was so content to just sit in the shade of a tree and scoop sand into a pail (all I could come up with was a hospital basin out of the back of the van and a stick for a shovel....she's so easy to please). The kids had a blast. Maya's only complaint was when she had to walk in the sand. I wish you could see the fuss she puts up. Can we say "sensory issues"? It is quite the scene and she certianly lets you know she is less than please with the situation.

Well, that's the week in a nutshell, I'll be better about updating this week and try to get some new pics on now that school is out and we'll be out doing more. Hopefully Maya will continue her trend of having good days. I don't know if you can consider one a trend, but I'll take what I can get! Thanks for checking in.

Holly

Wednesday, May 31, 2006 3:19 PM CDT

Maya is just so tired. I'm really not use to her being this way for so long. Yesterday she came home from school and told me it it made her too tired to even see. She does have small bursts of energy where she'll jump around and play for a few minutes. She's happy for the most part, just doesn't have much to work with. She spends a lot of time just quietly playing or laying on the couch/bed looking at picture books or watching TV. I'd say she's napping, but she doesn't really sleep...it's more like "spacing". She doesn't sleep well at night although she's always sleepy. She crys a lot at night and gets up several times complaining either her head, legs, or throat hurt. During the day you can add bellly to the mix too. We don't feed her at night so I guess that is why the belly is better at night. Who's to know. I found a quote today that sums it all up......

There ain’t no answer.

There ain’t going to be any answer.

There never has been an answer.

That’s the Answer.

- Gertrude Stein

We've had a few more episodes where she can't answer me and a few where she can't walk because the pain in her legs and feet is so bad. These seem to pass over time and are precipitated by activity and exhertion. I've just been letter her go and be a kid. Other than watching her with the heat wtih is such a big no-no for her she does an ok job with making choices and setting limits.

Todays labs showed she needs more fluid then we are giving her so we are adding some free water to her TPN. Otherwise things were looking ok. Her liver is recovering nicely and although she's anemic everything else looked pretty good. Next week we are going to try iron infusions for her anemia and see if that doesn't give her something to boost her numbers with. We tried this in October and it seemed to help her out for a few months and the only time we had to transfuse her then was with illness.

This afternoon is school with Mrs Kevin and tomorrow is her boat trip on the LaCrosse Queen (a paddle boat on the MIssissippi). She's really looking forward to it. She'll see the dentist in the afternoon and he's suppose to make a decision as to when she needs to see the oral surgeon and/or orthodontist since her lower jaw isn't really room on the bottom for any new teeth and they aren't falling out on their own (he's had to pull them or the new ones just come in way behind them).

Thanks for checking in on us.

Holly

Monday, May 29, 2006 11:27 AM CDT

Happy Memorial Day! What a beautiful day to remember and honor those who have fought and are fighting for our country and to remember those we've lost. Maya and I started our morning at our local parade to do just that. It was a nice little parade with the local middle school and high school bands, color guard, scout troups, and others. Maya enjoyed listening to the bands and seeing the flags. Then then had a ceremony to honor and celebrate that included a choir one of her nurses sings in so she was happy to finally get to see her sing. It was a nice way for Maya to get some idea of what the holiday means and participate. She was right there with everyone singing the National Anthem and America when the audience was asked to participate and signed her way through God Bless America. Unfortunately even early this morning it was getting pretty warm and she was fading even with the aid of some ice and water, but in the end it was worth it.

That's one thing that I'm struggling with right now...how much to let her do and when to limit her based on what I know is going to affect her later. She struggles so much with heat and while there are time that she just can't tolerate at all there is a grey area like this morning where it's early, there is a breeze and it is something she really wants to do for a short time. Of course, what I'm seeing now is she came home and is in bed laying there, not able to do much of anything so she's paying for this morning. Last night was a similar situation. We went to a cookout at a friends and she had so much fun playing with her friend Bailey. They colored, played games, then decided to do some dancing. They only danced for a short time, but by the time we left she could hardly walk and by the time we got home she couldn't walk and was in tears from the amount of pain in her feet. She was up on and off all night with foot pain which seems to trigger her itching which makes her even more miserable. It's not only just physical symptoms, it affects her metabolically too as she's had erratic blood sugars and increased belly pain/gastric drainage too. Sometimes it is just too much to think about so we just push forward.

Regardless, Maya's had a good weekend overall and enjoyed our time with friends yesterday and this morning. She's really tired now and most likely isn't going to get off the couch the rest of the day, but I think Maya would tell you it was worth it. Thanks for checking in on us. Hope you had a great weekend and holiday.

Holly

Saturday, May 27, 2006 4:09 PM CDT

It's hard to believe we are closing in on June already. School will be out this week and summer vacation will be upon us. Maya will miss having Mrs Kevin come to do school and going in to school for the other days. She loves school so much. This week she has a fieldtrip to ride a boat on the MIssissippi. She's really excited so I hope she keeps herself healthy enough to go. In the afternoon they are going to go to the park as a class and have a picnic, but I know that's out as we are already being haunted by weather too warm for her to tolerate. Once it gets much above 70 she is pretty much unable to be outside and playing because of the heat and her inability to sweat. When there is something we have plans for she wears her cooling vest or we accomodate the best we can, but playing at the park and dragging around all her pumps is definately out. She really only cares about the boat so I'm sure she'll be fine with that. As an exchange for the park I've scheduled her dentist appointment! Doesn't that sound like an equivalent good time, LOL! She actually loves to go to the dentist so it should be good.

Yesterday she had some sort of crash mid day. She was fine then unable to stay awake and unable to answer questions, etc. She ended up sleeping for hours only to wake up about half an hour and go back to sleep until morning. A milder, but similar episode happened this morning so I'm not sure what's going on. She's really tired now, but awake and laying on the couch playing with her leap pad. I get so tired of trying to figure things out. I mean, even when you call the doctor their only answer is to say they don't understand why and sometimes Maya just does these things. While I know that is true it doesn't really help me at the moment. It's just one of the frustrations that makes you wonder why you are on this journey in the first place.

Well, enough about that. Hopefully with the help of some extra IV fluids Maya will be up to going to church tomorrow and then out again in the evening. Monday we want to try to see a little Memorial Day celebration here in town if she's feeling ok. She told me she wants to "dress like a flag" on that day.

Thanks for checking on us.

Holly

Thursday, May 25, 2006 9:40 PM CDT

Maya's labs yesterday showed improvement in her liver function and pancreatic enzymes. This was great news and hopefully by next week they'll all be back down in the normal range. She is becoming pretty anemic so we'll have to keep an eye on that and see what things look like next week. It isn't very common for her to come up on her own so hopefully she'll at least just stay where she is for awhile and not need to go in for blood. The other concerning thing with her labs was her BUN which most likely was a reflection of her hydration. Right now that's what we are dealing with and trying to get a better handle on. Yesterday she got extra fluids and again today. She's acting like she's feeling better, but she's only had to urinate once today which isn't such a great thing. She had quite a bit out through her g-tube today and is starting to stool more than usual too. She's been throwing up, but hasn't since this morning when we decided to stop feeds. Tomorrow we'll go ahead and start her feeds back up and see how she does. Hopefully she's over the hump and well continue to get better.

Today she laid low and played for a bit this afternoon. She has been doing lots of sorting of her "collections" (rocks, bingo counters, dice, etc). That and she talks on her play phone much of the time telling tales and discussing her life. It is so fun to listen in on her "talks". Today she was discussing childcare and I caught the tale end of her conversation...."well, ummm, I was feeding my baby Maya and she could not want to drink her bottle. (pause) um, let me think...yep she was not drinking her bottle so I just got her a tube and gave her a syringe in her tubie then she didn't have a tummy ache and drinked up her bottle" It's kind of sad that she thinks that way, but on the other hand I'm glad she doesn't let her baby lay there in pain, LOL. and besides it's better than last year when she would play doctor and say, "what? You don't want to breath the mask for your surgery?" then laugh and hold down her baby with an anethesia mask on it's face.

Well, not too much else here. Maya's going to miss her end of the year fieldtrip tomorrow because of the issues with her line right now. They are going swimming at a waterpark. It's sad because it is something she loves so much and I know she would have had a great time, but with her line we just can't take a chance.

Thanks for checking in. If you get the chance take a minute to sign the guestbook...especially if we haven't heard from you in awhile.

Holly

Wednesday, May 24, 2006 3:42 PM CDT

UPDATE!!
Maya's liver numbers continue to come down..some are all the way back into the normal range. Of course one that wasn't up before now decided to go up, but that's not such a big deal with the others coming down so nicely. The biggest thing today is that she was pretty dry. Her BUN was very elevated so we are going to give her a fluid bolus overnight in hopes of getting her to pee and bring that down. No word on her cultures so no news is good news! Hgb is also down which wasn't really what we wanted either, but we'll just watch it another week since it is still above 9.

Maya's babies are doing well and ready to fly. My guess is they will be gone soon. I'm sure she'll miss them.



Yesterday her line started draining from the site and she started to run a slight temp, but nothing too high so we'll see what happens. She went in for cultures and labs today and I'm guessing since I haven't heard from the pedi on her labs that no news is good news and her labs are good. It would be nice to hear her liver numbers are back to normal and everything else is looking good too.

This afternoon she's having school with her homebound teacher "Mrs Kevin". The way she explains it the "Mrs" is because he is a boy. Apparently it would be "Miss" if he were a girl. Oh the things I have yet to learn!

Yesterday we sat by the Mississippi and watched the boats.

Maya said she could sit there forever. I have to admit, as nice as it was out yesterday, I had to agree. There isn't much else going on. Maya went to school on Monday and Tuesday...finally saw the sharks for her fieldtrip on Monday. Hopefully she'll be back at school on Thursday and then unfortunately on Friday she'll miss her fieldtrip to the waterpark since with her line looking funky we can't take any chances.

If something changes with her labs or we hear something on her cultures I'll be sure to update sooner than later. Thanks for checking in on us.

Holly

Saturday, May 20, 2006 6:49 PM CDT

Update:: Monday May 22, 2006

I thought since I had added pictures Saturday I'd just add a short update to the top today. Maya had a good morning yesterday and enjoyed playing with Devin yesterday afternoon. She played outside in the evening and sadly after about a half hour she started to have lots of pain in her feet to the point she could no longer walk. She ended up asking to be put to bed and cried much of the night with painful swollen feet. Today her feet are feeling a bit better, but she's having trouble concentrating and following what is going on. Sometimes I really hate this disease and what it tries to take from her........too bad it doesn't know who it's up against!

What a beautiful afternoon we had today. Maya and I got out and went to the part this afternoon to the opening of the zoo/park here in town. It reallly isn't as much zoo as park, but they had a bunch of little rides and stuff going on for the kids today so she thought it sounded like fun. I told her we'd go to the zoo this summer sometime when we went to the hospital so she could see big animals. Anyhow, she was very happy to get out and very much the "old" Maya I'm use too. First off there was this set of steps.

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She decided she wanted me to push her first up the steps then let her go at the top and see what would happen with her wheelchair. She then cut loose in a fit of giggling and kept saying, "do it Mama, do it!" She was easily distracted my a ride of a different kind and to a cruise in a little green car....



on a train....



and then set her mind on getting a tattoo! She decided this was much better than face painting since they can put it on your hand AND your mom won't wash it off for church in the morning.



After our park time we walked on the trails for awhile. Ok, I walked and she rode/talked/sang. She kept telling me she was going to "push Mama in the water" and had a song that had lyrics illustrating how that would all occur. This she sang as loud as she could disturbing whatever wildlife may have been lingering nearby. Her other big thing was on the hills to beg me to, "just let me go!" She loves it when I pretend to lose control of her chair and let her "roll away" down a hill. I added some pictures of our walk to the photo page too.

It's been nice to have her feeling pretty well over the past couple days. Last night we finished training one of her new nurses and they seem to be a good match. Wednesday we'll meet with the other again. I'm waiting to hear back from Children's as to the plan for Maya's immunology follow up. Right now they are working on a prior auth for her to begin IVIG. Wednesday we'll have labs again and that's the day we are due to increase feeds again too. It's nice to be settling in back at home again and getting into our routine of sorts.

Thanks for checking in on us.

Holly

Thursday, May 18, 2006 6:04 PM CDT

As I said in my update, Maya's labs were great this week. By great I mean much improved from the previous week and coming down closer to normal. This was what we were looking for so everyone was happy to see things moving in that direction. The morning of her appointment hadn't gone so well as she was vomiting and having belly pain, but whatever it was must have run it's course because by afternoon she was back to being Maya. In fact this week she's really starting to head back to her "pre-February" Maya personality. This last illness just really knocked her back more than before and it's taken her a long time to come back around. I think too we weren't realizing how much she was having symptoms from those elevated labs and just not expressing them verbally. You'd think we'd learn after all these years, but it never seems to work that way. Oh well, things are looking up.

This week Maya's gone to school every morning but Wednesday and has done really well. In fact one day she didn't even come home and nap right away. She is always happy to go to school...except for Monday when she thought she was going to have to go on a fieldtrip to see some sharks (a movie!). She was NOT going to go, but to her great joy the trip was cancelled. Now all she does is talk about "that fieldtrip where I go to see the sharks?!" She WANTS to go now. Silly girl!

This afternoon we were sitting outside reading and watching our Mama bird. We have a robin who built her nest on our air conditioner and Maya's been anticipating the eggs hatching for a couple of weeks. She calls the Mama bird "Robin..you know the one who doesn't work at the hopistal/clinic?" (Robin is our friend from the lab who draws her blood at the clinic!). Well, today she was thrilled because the babies were born and she could sit in her chair and watch them. She sat there for over and hour talking to the Mama bird. Her conversation went something like this, "Robin, you really need a break, why don't you and your daddy bird go spend some time alone together. I will watch your babies. What? You don't want me to? I am a good watching person. I love your babies. Someday when I am a butterfly I will fly just like you and we can be friends. Right now I will just watch your babies so fly Mama bird and I will sit here and watch." The Mama bird did fly away eventually then came back with a worm. Maya all the sudden jumped up and said, "what are you doing Mama bird with that worm? That will make your babies sick!" I explained the whole robin feeding the young thing to her which was way too much information for her. Half way through she interrupted me and said, "be quiet, I need to tell the birds what I learned in speech today!" That was the end of our science lesson and I was pretty much excluded from there on since she started whispering to the bird and cupping her hands so I couldn't hear her!!! Isn't she precious?! (sarcasm) I don't know where she gets it from sometimes...couldn't be her mother could it?

Well, that's about it here. We are low key on the doctor front for awhile other than our weekly peds appointments. I told Maya to lay off the getting sick stuff so we can be home this summer and just enjoy ourselves...we'll see how well she listens.............

Holly

Tuesday, May 16, 2006 5:39 PM CDT

Wednesday Update!! We saw Dr Brumm today and Maya labs were great! They still aren't "normal", but so much improved that we are so happy. Everything is heading downward so we are going the right direction. Thanks for all they prayers!


I can't tell you how hard it was to go without my internet connection for a whole week! Sounds like a little thing, but sometimes it is my only connection to the world and it is so hard to miss out on my caringbridge and e-mail group connections it was like being placed in isolation. I am so glad to be back, now if I can get my e-mail back up I'll be happy.

Lets see.....Last Tuesday we went to Milwaukee and saw the GI docs. Maya's liver and pancreatic numbers are less than pleasing so they were trying to come up with reasons why that could be. It could be the TPN, but it isn't an issue we've run into before and the sludge that was on her ultrasound before discharge was cleared so it wasn't that either. We decided to push feeds more and she's been at 6cc/hr all week and we went up to 10cc/hr today and she promptly started throwing up. She threw up three times before she started to settle down to just tummy pain. Hopfully things will improve there. The vomitting settled and the diarrhea geared up so if it isn't one end it is the other! She's been pretty fatigued during the days, but has a few bursts of energy. She's been able to go to school the past two days for a couple of hours and last week had her homebound teacher she so lovingly named "Miss Kevin" (her's a Mr) come over and do school. Thursday last week we went to Mayo and made some adjustments in her neurontin and although she was already at max dose for weight we took it up a little higher in hopes of regaining control of her leg and foot pain. Tomorrow we'll have labs and see the pediatrician again to see where things stand with her TPN, liver and pancreatic enzymes and also her blood counts.

We are in the process of working with a couple of nurses to do some training so Maya can have them all to herself and Mama can run out and get some things done without having to take her with me everywhere. Maya doesn't really like to go out much other than to read or blow bubbles in the yard or to someones house to visit so she'll be glad to be relieved of the "follow Mom around" duty.

Today we blew bubbles and read books outside since we finally had no rain and some sun. She ended up getting too warm and her feet turned ice cold and purple, but she had a good time while it lasted. It was a lot of fun to see her smiling and laughing. She didn't like the bubbles landing on her, her blanket, or within an arm reach, but otherwise she loved it. Funny, funny girl.

Sunday she told Pookie, "Today is Mother's Day, so today you are a mother. (he's a boy). Your baby should be here soon." Then she marched off. She came back later and checked around him on his blanket for a baby and was not pleased to find he was still the only one sitting there. She decided then he must be getting sad and got him a Hello Kitty to cuddle with.

Thanks for checking in, I'll post some pics from today on the photo page and try to update after we see the doctor tomorrow.

Holly

Thursday, May 11, 2006 7:36 AM CDT

Good Morning! Holly won't have internet access for a few days thanks to her internet provider accidentally disconnecting her. Nice huh? Anyway, Maya and Holly went to Milwaukee on Tuesday for appts. She had an EEG and ultrasound on her liver, pancreas, and gall bladder. They will also need to do another bone marrow aspiration at a later time because they need more bone marrow for further testing. They were able to increase her feeds to 6 cc an hour. Next week, she will have a stitch taken out from her central line. Right now, the line is kind of sliding in and out, but the doctors weren't concerned that it would come completely out. Holly was very comforted by the fact that Maya's main doctor and nurse came with to each appt and that Maya's best interest was always at the forefront. Since Maya doesn't always follow the norm when it comes to many things, it was so nice for Holly to hear the doctors recognize that, and to say it outloud.

Today, they are on the way to Rochester to see the neurologist. Maya has been regressing slightly in her schoolwork and doesn't always remember things she just learned a couple days ago, so Holly is curious if the neurologist will have any ideas for her.

Hope everyone is having a wonderful week! Thank you so much for all the love and support you give to Holly and Maya. I know they appreciate it SO much.

Karla

Saturday, May 6, 2006 9:06 PM CDT

Sorry so long since the last update. Wednesday Maya did sleep in, but woke up with a cough and stuffy nose. She was suppose to see the dentist, but we put this on hold for awhile until she starts to feel better and things are more on a steady pace. Thursday Maya and I met some new nurses who will be working with her. She was excited to find out when we got home she was having school with her homebound teacher again. She really enjoys working on her school work and the computer reading program they are doing. She also worked on a "secret" project which she's told me about at least daily since then (I'll still act suprised!). Last night we had the chance to see Martina McBride in concert. Maya LOVED it. For a kid who can't sit through a cartoon at the movie theater I was suprised how long she sat and listened to a concert. It was a great concert and we had a wonderful time. Maya kept telling me on the way home, "That little girl could sing good...and she was really, really loud too!" I guess with the distance to the stage she thought she was a little girl :) Today we went to see the movie RV with Robin Williams. It was cute and Maya watched most of it and laughed at a lot of the slapstick humor.

This week will be a busy week with a trip to Milwaukee and one to Rochester. Hopefully some of the issues we are dealing with will be addressed. She's been complaining of pain in her feet and also around her CVL site. Her site looks like it is irritated too, but hopefully not infected. She'll also have school at home this week and maybe get to return to school a bit too. Tomorrow evening we are suppose to work with one of the new nurses so she and Maya can get more comfortable with each other.

I have to share a Maya funny. Yesterday morning Maya was out with me going to some garage sales. About an hour into the morning she told me she was ready to go home and I told her we weren't ready to go home yet. She resumed looking at her books and I figured she'd forgotten her argument. Well, a few houses later I got back in the car and said, "Brrrr! it is getting cold out there!" she replied with, "Well Mama, Maybe we'd better just get you home and warm you up!" What a kid! She is so funny sometimes and so smart when she wants to get her own way.

Thanks for checking in on us.

Holly

Wednesday, May 3, 2006 7:52 AM CDT

Yesterday Maya woke up with a stuffy nose and sore throat again. Hopefully this morning will be different. Notice I don't know yet and it is already 7:50?! That is because after two all nighters she decided she'd sleep last night. Actually she didn't fall asleep until after midnight, but I'll take what I can get. She really needed the sleep since she was not a very pleasant littl girl last evening. If I hadn't been looking at her when she talked to me I'd have swore that she turned into a teenager at some point because boy was she mouthy!

Yesterday was a beautiful spring day outside. We took out a blanket and read out books outside in the afternoon and took her magnets out so she could get some fresh air while Mama read outside for awhile. We also enjoyed watching our Mama bird who lives just outside our window and has a nest with three beautiful robin eggs in it. Last year we had a Mommy robin too and it was fun to watch the babies when they came. The picture on top is from our afternoon yesterday.

After our time outside Maya's homebound teacher came by along with her speech therapist and she did school. She misses school so much and loves it when she gets to work on her schoolwork. There were lots of giggles and smiles so I know she had a good time and worked hard. It is nice to see her learning and practicing all her new skills she's missed out on so much this year.

We've had so many questions as to what we'll do with the baby peeps when the hatch--hee! hee! I asked Maya what she though we should do and I got her current answer to so many questions...." I will keep them and love them forever and ever!" It is right along the lines of other recent answers of...." I'm going to stay awake forever and ever!", "I'm going to leave my mess on the floor forever and ever!", and my personal favorite, "Mama, I love you...I want to stay with you forever and ever!"

Thanks for checking in. As always we appreciate you support and prayers.

Holly

Monday, May 1, 2006 8:34 PM CDT

Well, things weren't as good today as we would have liked with her labs. The thought was that this week they would begin to drop back down toward the normal range and they continue to rise. Her liver and pancreatic enzymes are all elevated and each time we check them they get a little higher. We are starting some feeds tomorrow at about 3cc/hr to see if that doesn't help things a bit. Hopefully slow and steady will be the key. Next week she returns to Milwaukee for a GI follow up and if things aren't improved I guess we'll get some more direction at that time as to what else we can do. She has a sore and red throat today also and a low grade temp. I'm hoping this doesn't turn into anything more. She seems to be feeling pretty good today if you measure that by the non-stop talking and lack of sleep for the past 36 hours! Only time will tell.

I have to share what I found when I came into the living room this afternoon. The first thing I noticed when I came around the corner was the empty box of kleenex in the middle of the room. Upon closer inspection I noticed that she was sitting on all the tissues. I asked her what she was doing and was informed that she was sitting on her "nest" and hatching her Peeps. When she got up and moved a few minutes later I noticed she'd been sitting on her little stuffed Peeps and about 15 plastic Easter eggs! She is always up to something.

I'm not sure our plans for the rest of the week. I think it will depend on how her feeds go and if she stays feeling good. Tomorrow is my turn to go to the doctor and then next week Maya goes to Mayo for an apointment for neurology and to Milwaukee to follow up with GI.

Thanks for checking in.

Holly

Saturday, April 29, 2006 7:52 AM CDT

Maya continues to plug along here at home. She is pretty tired and worn out most of the time and spends lots of time on the couch, but her personality is back and she is still so happy to be home.

She ended up not going back to school yesterday as Thursday really wore her out. I think next week we are going to try every other day with homebound on the days inbetween. I think this might give her a better chance of feeling good on the days she is there. Yesterday she had a temp, cough, and sore throat, but today seems better. I'm wondering if the symptoms weren't more reflux than viral, but who knows...with the temp I'd rather believe viral then related to her line or something more serious. Right now the site to her line is red and puffy, but we are doing daily dressing changes due to some skin issues so we've been able to keep a good eye on it. It doesn't seem to be bothering her quite as much so maybe we are on the mend with that too.

Right now her itching is her major complaint along with some tummy issues yesterday. She is having belly pain, nausea and bloating again which is hard to figure out since we aren't feeding her through her GI tract at all. Hopefully this too will resolve itself.

No big plans this weekend. We are laying low so Maya can regain her energy. Our friends Devin and Michael are having their birthday party today so we are going to stop over for a few minutes and see them, but other than that I highly doubt Maya will get off her "perch" (a big square Hello Kitty cushion) all day.

Holly

Thursday, April 27, 2006 12:05 AM CDT

Yesterday's labs were not improved as we had hoped they would be. Her liver and pancreatic numbers have continued to increase so we'll recheck labs again on Monday. Maya's pretty tired today and continues to be itchy...we aren't sure if this is related or not.

Maya was happy to see everyone at the clinic again and she also got to see Mix Karla and her Jakey yesterday. She wasn't too thrilled he borrowed her wheelchair, but she got over it. She kept telling us, "I don't think Jakey likes my purple wheelchair" which is her subtle way of saying, "get that kid the heck out of my chair....IT"S MINE I TELL YOU>>>MINE!"

Today she tried school for a bit this morning. She's so tired now I hope it was an ok idea. I guess we'll only know what she can handle by trying and to be truthful Mommy enjoyed the little break. She's back on the couch now drifting in and out of sleep. I got her a little butterfly sign that says - Welcome - to put near the entrance to our apartment. She helped me stick it in the ground and said, "now I'll never not know where I live...I'm gonna be a butterfly when I grow up anyway and now I know where my home is!" What a funny girl I have.

Thanks for checking in on us. I added new pics the other day to the photo page. The middle one is on her in her costume fashioned by one of the docs she named "Sniggle doodles". She can't even mention him without breaking into giggles. She tells me each day she misses him.

Holly

Tuesday, April 25, 2006 7:07 PM CDT

Home!!!!!!!!!!!

Hard to believe we are finally here. Maya is settling in and enjoying all of the toys she's missed while we were in the hospital and I'm just trying to keep up with meds, IV's, etc. It is good to be back and hopefully soon things will start to settle down.

We are still waiting on many of the test results from while we were in the hospital, but there are several things back that they are trying to put in some sort of order since they don't all fit together in a nice package like we wish they would. Maya continues to struggle with diarrhea and is home on replacement fluids and also replacements for her g-tube losses. She remains on TPN and lipids also we have the rolling backpack back in service :) She's still on one of her IV meds, but the one we were using for her stools we had to stop since Sunday her liver and pancrease numbers went way up and most likely the Sandostatin was the cause of that. Hopefully those are on their way down or we won't be home for long. She had an ultrasound on Sunday and her gall bladder and some of the of the ducts were full of sludge (nice!) so this is the biggest concern right now.

Tomorrow we'll return to see Dr Brumm, labs, etc and see about returning to school. Maya did pretty well today with only one dose of meds for pain and a couple for itching. She asked to lay down a couple of times, but since she's not been out of bed for the better part of the past 6 weeks it doesn't suprise me. She's sleeping on the couch right now so I'm just going to leave her be until 9 when I change her TPN over.

I wanted to thank everyone whose made these past couple of months easier for us. So many people helped in so many ways I don't want to list you all because I don't want to forget anyone, but from the guestbook notes to the laundry, visits, cat care, and more we both (and Pookie too!) thank each of you.

I'll update tomorrow after we get her labs back. Thanks for checking in.

Holly

Thursday, April 20, 2006 10:53 AM CDT

There isn't a whole lot new to say. We are still waiting on a lot of the testing to come back from last Friday and some of the results that did come back have prompted further testing so we are back in limbo. Hematology is trying to track down a doctor who is known for some testing they need done and then Maya will get her much needed transfusion and I'm sure that will help her feel better too. She's been having headaches and a high heart rate, but is pretty anemic right now so that is most likely why.

She continues to have a lot of diarrhea and is on a Sandostatin drip for that. They continue to titrate this in hopes we can at least cut down on the volume of stool before she goes home. The plan is to go home next week on TPN/lipids, Sandostatin, her IV meds, regular meds and some replacement fluids which will most likely go into her TPN.

Maya will be thrilled to go home I'm sure since tomorrow will mark the 6 week point in our admission. She's doing pretty well though and the only thing she really asks for is Pookie. She does receive school here, although this week is Spring Break for Milwaukee so she's not seeing her teacher this week.

Well, Maya's waiting, I'd better get back. Thanks for checking in.

Holly

Saturday, April 15, 2006 1:29 PM CDT

It was so nice to spend some time with the girls this week. A couple from Holly's church was going down Thursday night to Milwaukee, so I went with them and was able to stay until last night. Maya was excited we were having a slumber party and wanted all three of us to sleep in her bed! She moved over as far as she could too! LOL

They brought Maya down to the surgery floor after 11:00 and we all were able to be there with her until they took her back. Surgery started around 12:30 and the doctor came out to talk to Holly after 3:00. She had a broviac line placed, endoscopy, spinal tap, bone marrow aspiration, pancreatic function test,full thickness colon biopsy, and a rectal biopsy. The results will be in on Tuesday hopefully. Maya was very uncomfortable last night, which broke all of our hearts.

I have added some pictures of smiley Maya yesterday morning before surgery.

Karla

Wednesday, April 12, 2006 10:05 AM CDT

Maya continues to have lots of diarrhea and is requiring IV's for stool replacement and g-tube replacement. She is also getting her TPN and lipids. For the most part she is feeling well and wants to get out of here. I can't beleive we are wrapping up our 5th week inpatient and still have no answers. Friday will make 7 weeks since she first showed symptoms of being ill this time.

Friday she is going to have a new line placed along with several other procedures done at the same time. They are trying to do all they can at one time while she is under anesthesia so they only have to do it once. There are still a lot of questions as to why she isn't improving so they are going to be looking for more answers with some biopsies.

Right now Maya is with her teacher doing school. She receives school in her room with a teacher and when she is out of isolation she'll be able to go to the classroom here in the hospital. She really misses school so this has been nice for her.

Not a whole lot of other info to report right now. Thanks to everyone who's made this visit to club med easier for us and kept Maya busy with activities and visit, cards, etc. She loves it all.

Holly

Monday, April 10, 2006 2:34 PM CDT

It's hard to believe it has been over a month since Maya's been in the hospital and over 6 weeks since she got sick this time. Today is the first day I can say she is truely back to being Maya. We are still not feeding her yet at all through her J tube and she is just on TPN, but at least she is feeling good and bossing the nurses around like she does so well. The doctor came in this morning and they are planning on placing a broviac later this week in hopes of planning a discharge at some point. The plan is to go home on some feedings, some TPN, and most likely the Sandostatin we are using for the diarrhea. We'll see how it goes. What I've learned so far is nothing goes like you plan it.

We are up on the 8th floor now in 823 and there is a new phone number which I'll have Karla add when she gets a chance.

We are still waiting for the testing from hematology and immunology, but so far they are finding some things that had not yet been found. Not all the nifo is in yet, but hopefully in the next month all that testing will be completed.

Not too much else to add, thanks again for checking in and for all the support.

Holly

Friday, April 7, 2006 12:28 AM CDT

Sorry for the delay in updates. Most days are too crazy to actually make it down here to the computer and some days I just don't know what to say. It seems things just move slower and slower and we are really no closer to any answers. She did have her motility testing on Monday and yesterday we had a care conference with the GI docs and they had the results back from her biopsies that were done during her endoscopy/colonoscopy. She has several bugs in her small bowel that don't belong there and continues to have terrible diarrhea so we are trying to take steps to stop this before we can work on feeding her again. She's still on TPN through her PICC at this point and receives stool and g-tube fluid replacements also since her blood pressure doesn't like to stay up very well unless we keep her fluid intake up. From the looks of things we'll be here another couple weeks and there really isn't a plan as to what the final plan is for her care at this point. She is getting a hematology and immunology work up along with being seen by several other doctors in regards to issues we already knew about including her mito.

I'm hoping to get back and update more frequently now that we are trying to move forward a little faster. Thanks for all the notes, calls, happy mail, support, and prayers.

Holly

Saturday, April 1, 2006 5:15 PM CST

Maya seems to be improving each day. She's able to roll over in bed and is doing well with her pain meds although they don't quite hold her the whole time until they are due next. Her endoscopy and colonoscopy biopsies should be back on Monday or Tuesday and the scopes themselves went well. There were some findings that they will partner with the biopsies and manometry reports to formulate a plan for where to go next. Her small bowel function appears to be impaired with dialation of the small bowel and reverse perastalsis (sp?). They also know that when she does return to being fed through her J tube she'll need to be totally carbohydrate free. Again, we'll know a lot more next week when everything can be put together and we talk with the doctor doing Monday's testing.

Right now she is on TPN and NPO including most of her meds which for the most part are IV or stopped. She still has her catheter and line and is on the monitor. She is awake more and watching Dora, Barney, and the rest of her pals today although she sleeps for the most part of the day. Things should stay status quo through the weekend and they are monitoring her labs every 8 hours and replacing her stool loss in addition to her TPN and lipids. She also grew yeast in her stool so we are treating this also. She is no longer spiking temps so that has been good news also and I think we are on the upswing of this. Hard to believe she's been sick for over 6 weeks now and in the hospital for over 3 of them.

I'll try to update soon. Thanks for checking in.

Holly

Thursday, March 30, 2006 3:22 PM CST

I just wanted to add a quick update. I'm not sure how much I'll actually be able to get on the computer, but Karla's doing a good job for me so I'll continue to keep her updated too and let her keep this up. Our new contact info is at the bottom of the page since Maya was moved to another floor on Tuesday night. Here she is able to be monitored more closely and receive the treatment she needs. Yesterday she got her new line in and they'll go ahead and start some sort of TPN soon. Right now she just has multiple bags of fluid running with different electrolytes added to balance things out depending on her labs which they are checking fairly frequently. She continues to have almost 2 liters of diarrhea a day so that is what they are trying to keep up with on the fluids and then they are using a catheter to better keep track of her output. She's not getting any tube feeds and very few meds through her tube right now and mostly everything IV until we are able to slow things down and better control everything and find out what exactly is the cause of the tummy issues. They are going to try to scope her tomorrow and do manometry on Monday, or at least that is the plan as of this morning. Maya's pretty much slept since we came on Saturday with the exception of a few hours here and there on Sunday and again today.

Thanks for all the calls and guestbook entries. I don't have much access to the computer, but they are being shared with me and I appreciate them all. I'll have Karla update after tomorrow's testing is done or if anything else changes.

Holly

Tuesday, March 28, 2006 10:45 PM CST

UPDATE! Maya has been moved to another room. Her phone number is 414-607-5059, room 459.


Sorry for the lack of updating! The GI doctor came in today. He seemed very nice and understanding. There will be some more testing this week to hopefully better understand what is going on. Maya will also have a PICC line placed tomorrow so she can have some fluids since the IVs aren't staying in so well. Keep praying!

Karla

Sunday, March 26, 2006 10:24 PM CST

Maya was transferred to Milwaukee to the Children's Hospital yesterday. She had lost another IV, and the doctor felt it was time she saw the GI doctors at Children's to try to figure out what can be done to help. We stopped by today to see her. Our family happened to be in the area for a conference, talk about "luck" huh? She looked pretty good today, enjoyed playing with the boys. Not long after we left, she was fast asleep and then started vomiting. The GI doctor will be in tomorrow, so I will keep you updated.
Room info is on the bottom of the page.
Check out the new pics too!

Karla

Friday, March 24, 2006 12:46 AM CST

The IV lasted longer than most, but it is gone. Today they are trying to place another one because without it, she is getting dehydrated and not peeing. Hopefully this weekend will be quiet, dare I say that word, and uneventful. Maya was SOOO excited to received a package from Uncle Donald's House today....the most beautiful wings. She was beside herself I guess, she was so happy! Thanks so much Donald's House :)

Keep praying!

Karla

Tuesday, March 21, 2006 12:31 AM CST

Hello! Maya has spent the last few days pretty lethargic. Diarrhea still continues. She was able to start her feeds again on a lower rate. Another IV was able to be placed last night, since she was obviously dehydrated and after getting some fluid boluses, she is much spunkier again today. The pediatrician will be in tomorrow and will discuss where they will go from here. Hopefully this thing will turn around soon!

Karla

Friday, March 17, 2006 8:04 PM CST

Good evening everyone! I spent the day with Holly and Maya today. Maya continues to have diarrhea, no IV access, and is now on pedialyte instead of formula. She has lost another pound overnight as well. Last night, she pulled another all nighter. Luckily Holly was able to sleep through some of the night and Maya's jabbering! She was in full force jabber mode today. This is the way Maya often deals with being sick, she is very busy, talking, playing, yet she isn't really playing, just simple busyness. It's definitely her way of dealing with what is going on. Holly and I were talking, which Maya really didn't have time for, since she likes to have her Mix Karla all to herself. There was a lot of clapping in our faces and excuse me's just to get our attention. She is something else. Gotta love her :) Holly was able to get her Jakey fix too and spent lots of snuggle time with him. It's always fun switching kids for a little while! LOL

Maya got two treats today from her special pharmacy ladies. First she got some presents and then she got to hold one of the worker's new baby she adopted from Guatemala! Check out the pics on the photo page. Tessa is ADORABLE! She and Maya look a lot alike in the pics!

The weekend around the hospital is relatively quiet, so hopefully things will go well for Maya this weekend...no more diarrhea and will be able to get back on her feeds so she doesn't lose more weight. Please keep praying!

Karla

Thursday, March 16, 2006 11:57 AM CST

Wednesday and early Thursday morning were spent going through IVs and IV attempts. Maya is currently without an IV since it is becoming impossible to find any veins that don't rupture after the IV is started. Feeds will be attempted today. Please pray that it goes well and her meds stay down. She is still having diarrhea too. Hopefully the next few days things will turn around.

Karla

Tuesday, March 14, 2006 7:23 PM CST

Hello! Thought I better update! I stopped by to see the girls today. Maya was excited that I had brought her mail. She had fun opening her boxes from Nana and mail from Hugs and Hope. She was finally awake much more now than she was this weekend. Feeds haven't been started yet, but she is getting IV fluids and her most of her meds through IV as well. There were some issues with the IV last night, so please pray that Maya is able to get through this hospitalization without constant access issues.

I was reminded today that Maya's Gotcha Day was on Sunday! What a blessing she has been to Holly and her family, and all of us who are so incredibly blessed to know her.

Karla

Saturday, March 11, 2006 12:43 AM CST

Hi! This is Karla. Maya was admitted last night because she's had diarrhea for 2 weeks, been throwing up everytime she gets her meds, and is dehydrated as a result. She is getting IV fluids and most of her meds through IV as well to give her tummy a rest. Maya is also still on antibiotics to help with the bacterial overgrowth. Please keep both of them in your prayers!

Karla

Wednesday, March 8, 2006 5:51 PM CST

Maya continues to have tummy troubles. I'll spare the details, but she has horrible diarrhea and is only on pedialyte right now. Even with this we are struggling. She'll go back to the clinic tomorrow. Today we took stool in for various things and maybe that will turn up something. Most likely it is just related to the bacterial overgrowth we are already treating. The biggest thing we are trying to prevent is dehydration. Right now things look ok and she is playful, just more quiet and tired then usual.

Not much else here. She's keeping me busy with her tummy and that's enough right now. She is excited about her school music program coming up in a couple of weeks, but right now she's not been well enough to go to school because of the tummy stuff. She practices her singing and her line though and it should be fun.

I'll update if I hear anything different tomorrow at the doctor.

Holly

Saturday, March 4, 2006 9:48 AM CST

This week has been so busy I haven't had a chance to update so before I get another "reminder" from Chuck in my guestbook I'll post a quick update.

This week was read across America week to celebrate Dr Seuss's birthday so there were special days at school. Monday was were your PJ's, Tuesday was Green day in honor of Green Eggs and Ham (Maya's current Favorite book), Wednesday was Wacky so she work stripes and poka dots, Thursday was dress as your favorite story book character and she wore her butterfly wing since she love the Very Hungery Caterpillar and the butterfly at the end of the book. Then Friday they had a spirit assembly and wore orange, but Miss Maya was sick so she was home that day.

Maya has been having tummy aches with diarrhea and lots of bloating and wretching this week. It actually started last week, but is getting worse. There is more going on, but is kind of subtle so it is hard to tell if she's sick or just being Maya. Anyhow, yesterday she just really had a rough morning was was moving kind of weird so I broke down and took her in. We did labs, x-ray, etc and still we had the same thing this morning. Labs look pretty good. K+ was good for a change, HGB was good so there were some really good things we've finally gotten a grip on. X-ray showed her tummy is full of air so maybe she has bacterial overgrowth? OF course, she's mommy's girl so you ask her and she says, "I'm fine... 'cough'puke'..really" and off she goes again. She's happy. I guess we'll see what the week brings.

Thanks for checking in.

Holly

Tuesday, February 28, 2006 9:24 AM CST

Maya continues to improve. She ended up with a pretty bad urinary tract infection that was causing a lot of tummy upset and fevers, but she's doing much better and although she's more tired then usual and still having some tummy problems we are on the right road. In fact she even had it in her to take a friend to battle....



Now that's my girl. Of course, he was such a gentleman and took it easy on her, but they were both too pooped to pop by the end of the day and although she tried to stay up as long as she could she literally "fell" asleep in a heap in the middle of the living room while he kept telling me not to take his picture although he too was sound asleep at the time.



Gotta love em! Her buddy by the way is Devin, sweet little Jakey's brother (www.caringbridge.org/wi/jacobdavid). Maya likes to harass him as much as she can including pausing his DVD when she walks by the TV and acting like she can't imagine how that could have happened, sitting as close as she can without touching him, holding his hand in public (a big no-no when you are a 7 year old boy!), saying his name endless times in a 5 minute period, and all those other things kids do that have siblings. Maya just saves them up for the few hours a week she spends with him!

Thanks for checking in. This week is Read Across America Week and they are doing lots of fun stuff for school so stay tuned for lots of fun pictures later in the week. Maya has a different theme to dress for each day.

Holly

Thursday, February 23, 2006 6:40 PM CST

I've promised picture of her glasses so I thought I'd add these. They have magnetic sun glasses that clip on so she likes that part of them and is reallly good about remembering them so far. We'll see how long that lasts :)



Maya isn't feeling too well today. She had a good morning, bad afternoon and is a little better this evening. She still has a fever tonight and has some tummy issues, but zofran seems to be doing the trick with that. We'll see where it leads. She has a UTI so hopefully that is all that this is. Her potassium was low today so we increased that again. Not too much else going on here. Still hoping for a quiet weekend.

Holly

Wednesday, February 22, 2006 1:53 PM CST

Sorry for the delay in journal entry, we were both so tired when we got home last night after two very long day we just crashed. It's been good to regroup today and get on with our week, hard to believe it is already half over!

For those of you who hadn't seen the update, Monday went ok except for the added excitement of about 3.5 hours to get in for her biopsy plus all the fun that goes with poor IV access. The biopsy itself went well though and she woke up easily as usual. The problem was we were then on a tight schedule back to our local hospital to have her GJ tube replaced since that had run into problems on Sunday afternoon. All said and done it was a long day with absolutely no break until everything was done. Thanks to our wonderful local doctor in radiology and his staff we were able to work things out and he stayed late to get this all done. He is so wonderful with Maya and works with her so we can do this with as little anxiety on her part as possible. In fact, she actually laughed at times at times during a procedure which use to take general anethesia. There are still owie times, but she deals with them better.

Tuesday proved to be just as long of a day although I was better prepared and at least ate a breakfast bar before we left in the morning! We started off seeing the developmental pediatrician who deals with both the behavioral and developmental end of things. He was really pleased with the progress he's seeing and agreed things look really good there. We addressed a few behaviors and how to handle them and also where she is developmentally right now (about 4 years). Sometimes it's difficult to seperate this out from where her school skills are since they often are beyond that in many areas. The biggest thing though is progress and forward motion and we are seeing that so that's wonderful. Next we headed off to see the endocrinologist and got the results of her biopsy from Monday. They had taken 16 samples and none showed any malignancy so that was wonderful news. The news I didn't expect was that didn't mean we could just forget about it now. We still have to keep a close eye on it though. She also reviewed the rest of the labs from our last visit and what those results meant. Finally we headed over to nephrology. She reviewed all Maya's labs and was able to determine her kidney issues are secondary to her primary metabolic disorder and not a primary kidney disorder. That was the good news. The other good news was no stones and her kidney structure looked good. The not so good news was she is culturing out e-coli in her urine again so she's back on antibiotics. The other not as good news was her kidneys are simply wasting the potassium, that is why she has such a high potassium requirement and basically all we can do about it is continue to replace it. She said we need to keep a close eye on it and also her hydration. There were other levels that were also abnormal so we discussed what that means and what to do about that also. Again, nothing we can really do, but make the attempt to replace what she is losing and try to stay on top of things. It was good to hear we are doing the right things for her and I feel so blessed that she has a team of doctor's who really know her so well and what her needs are. When we have had issues in the past sometimes I find I get focused so much on those I forget how blessed we really are with so many people who do care about her.

Today she headed off to school very excited that Miss Deb was going to be back although she was going to miss "Mrs Kevin". That was her funny for today. Last week she had a sub since her one teacher was on vacation. Her sub was Kevin and she would call him "Mrs Kevin" to me. I asked her why Mrs Kevin and she answered in her best 'duh mom' voice, "because Mrs Kevin is a boy, she is not a girl!" What a hoot! Who do people without children laugh at?????

Hope everyone is having a good week. I am going to try to get her picture today in her new glasses, we picked them up yesterday when we were up at Mayo as they finally came in. They are cute, but I'm still getting use to them. We are off to the doctor again tomorrow for labs then hoping to have a quiet weekend. Of course I've just cursed myself by typing that here :) Oh well. Thanks for checking in.

Holly

Friday, February 17, 2006 10:43 AM CST

Monday update:
Maya's biopsy went ok today. Actually that was the easiest part of our day. Yesterday her GJ tube became displaced so that was added to today's list of "to do". We waited over 3.5 hours just to get in for the biopsy and after several IV attempts the anesthesiologist said she couldn't thread one in so they just used inhailed anesthesia. After the biopsy we rushed back to Skemp to have her tube replaced which wasn't just out of place (in the tummy and not jejunum), but also plugged. Tomrrow we get the results of the biopsy and also have several other appointments. I'll update when we get home.



SNOW DAY DUDE!!! Yesterday was a snow day and today was a planned day off so it was a 4 day weekend for Maya. Actually a 6 day weekend since she'll be at Mayo on Monday and Tuesday next week for appointments. She's keeping herself busy though and has done every puzzle she owns. That is no small feat if you've ever seen her puzzle basket. She spent most of yesterday dressed in her butterfly wings and a crown and with that goes a lot of "fluttering" about. Truthfully it was enough to drive a mommy crazy in such a small space. Today she has toned it down and I think I'll survive the weekend. Acutally it has stopped snowing today so we are going out to the movies this afternoon. We saw Curious George last weekend so we are going to see Eight Below today. There is a dog named Maya in it so maybe she'll even watch the movie. She loved Curious George. It was the first movie she actually has watched at the theater from start to finish. Usually she either takes a nap or plays Silly Putty. We have a wonderful theater here that offers a special for people with disabilities which allows us to take advantage of seeing so many movies. Just another one of the many blessings in our lives. I know it may sound small or like it shouldn't really matter, but just getting out sometimes and not having to worry about anything is enough to give me the extra breath of fresh air I need.

Anyhow, Maya is still struggling with night time and coughing while she sleeps. I am thinking it is reflux at this point, but still waiting to see when we'll get in to see GI in Milwaukee. We did make some changes in her meds this week and maybe that will help things calm down a bit at night. Feeds are going really well although I'm thinking we are going to have to increase them soon to keep up with her needs. I guess we'll wait and see what they have to say when we go in. Monday is the big day to finally find out what exactly is going on with her thyroid and put that issue to rest. Actually it will be Tuesday when we get the results and also see the kidney doctor and developmental pediatrician at that time. They just called to say her new glasses came in too so I am looking forward to picking those up. I'll have to post a picture when we get them. They are soooooo cute on her.

Thanks for checking in and thanks to all who made her week extra special with your Valentine's suprises. There are so many people who touch our lives in so many ways I could never list everyone, but we do appreciate everyone who is a part of our lives though prayer, though physically being a part of our lives, though the guestbook, or whatever it is you may do...we thank you. I know I don't say it enough, but we do.

Holly

Tuesday, February 14, 2006 12:21 AM CST

Maya was so excited this morning that it was FINALLY Valentine's Day. She was very disappointed it wasn't more of a celebrated holiday. She got in the car after school and said she was very sad about Valentine's. I'm not sure what that was all about, but she was very excited to come home and find a special Valentine treat waiting for her.



She likes donuts so to find a purple donut was a special treat. She only licked the icing and took a couple of nibbles before she set it aside, but she was happy none the less.

The other night we went skating. This time it was easier for both of us, and much more fun since gripping the wall with all my strenth wasn't the main focus of the time I spent there. She's thrown off balance a bit by her feeding pump, but still does pretty well considering.



Medically we are trying some new med combinations to help with her tummy issues especially at bedtime. We also tried to do some pulmonary function testing, but weren't able to get the testing done as she couldn't follow what they were trying to ask her to do. Overall things are going OK. We deal with challenges frequently, but she's doing pretty well with her feeds and her weight is stable. She is eating some, but receiving 100f her nutrition through her feeding tube. What she eats is extra and that's good since some days she eats nothing and other days she eats well, but it backfires and causes more problems than good. Other days go great and life seems normal. I think once we get next weeks trips to Mayo out of the way we'll have a break from traveling for awhile and maybe can settle back into a routine.

Thanks for checking in on us....I'll leave you with a picture of my little Valentine.

Saturday, February 11, 2006 11:00 AM CST

Our appointment Thursday went well and Maya's labs looked good with the exception of her potassium with has been a long term issue. We increased her potassium through her J-tube again and hopefully this will bring her levels back up again. We are waiting to hear from nephrology, but the thought has always been she is wasting through her kidneys which is not really a huge deal, just something we have to stay on top of and keep track of replacing. It is also nothing new as she's always been on a potassium suppliment, it's just become a bigger problem then it use to be. We'll see the pediatrician again in a couple of weeks to recheck those levels and her weight, but things look pretty good. Monday she is going in for pulmonary function tests to rule out this as a cause for her coughing. Most likely it is reflux, but sometimes it is easier to rule things out then in. She also had that really bad lung infection back in November so it is logical that she may have had some lasting effect from that. Next week (the 20th) is a bigger week for us with her thyroid biopsy on Monday and then she sees the endocrinologist on Tuesday along with the nephrologist to discuss both the biopsy results and the results of the testing we did a couple of weeks ago. Again, not expecting any suprises there, but it'll be nice to have it all behind us.

Friday Maya had a fieldtrip for school. They went to the Children's Museum and must have had a great time because she was so tired all afternoon. She took a long nap and needed an extra dose of pain meds for her leg pain. She is still having leg pain today, but it seems to be improving. We were going to go skating last night, but decided it would be better for her to take it easy this weekend so she'd be ready for school on Monday. It is hard for her to realize sometimes she has to make choices when it comes to physical activity. This was the extent of activity in our house this morning....





Maya is really looking forward to Valentine's Day. She plays with her Valentines from last year every day and has hers all made out for school already. We had made some for her special friends at the hospital this week and delivered those. She was disappointed not to find all her friends she was looking for. She had fun though and is in a Valentine frenzy here. I'm sure it will keep her busy through the weekend as she is having Valentine Party after party with all her stuffed friends and doing lots of "heart" activities.

Well, I'd better be going. She has been asking for french fries and chocolate milk since 4am. I suppose we'll make a Uncle Donald's run. This is the third day in a row and yesterday she actually took some sips of the milk instead of just staring at it. Some days she is requesting and even tolerating more than a few bites of food. Other days it is nothing, but at least a step in the right direction.

Wednesday, February 8, 2006 5:40 PM CST

I want to start by saying please say a prayer for our friend Jaxon today as he had surgery earlier today and is beginning his recovery.
You can visit him at Jaxon
.

Maya is starting to feel better today after we gave her a break yesterday and just ran some pedialyte. She was up and playing most of the day and even made it back to school this morning. She does seem to be coughing more this afternoon, but I'm still not sure if that is her throat or her reflux. I guess time will tell. Last night was the first night in several night she did not spend the first several hours retching so I think we are back on the high road.

I did get a call from her endocrinologist today and she said the results of the ultrasound came back showing she will need to have a biopsy of the nodule that is on her thyroid. There were several enlarged lymph nodes in the area that limited visualization too so this is the best way to determine what exactly is going on with this issue. They'll be scheduling it as soon as possible.

Thats about all the excitement here. Oh, here is a Maya funny. She was writing out some words today and asked me, "Mama, what comes after M?" I asked what she was trying to spell and she told me she didn't know, but "what comes after M?" She said she did not mean in the alphabet, not in her name, just in the word.....always a puzzle my girl :)

Tomorrow she goes to the pediatrician so if anything changes I'll update then. I'll try to get some pictures up of the My-o-lantern too this weekend. She is currently sporting a grin with 3 missing teeth. It is just too cute!

Holly

Monday, February 6, 2006 6:51 PM CST

Since many of you don't know Maya other than through this web page and other who know her don't get the opportunity to see her very often I thought I'd give you all a look into many of the subjects of conversation around our place, Maya's likes and dislikes, and other little Mayaism's I may or may not have shared recently.

Although she is still a Dora fan she is currently very into Hello Kitty. She has a stuffed Hello Kitty we got at Epcot that sleeps with her every night. I am reminded frequently when asked where she is and answer with, "he's over there" that "Hello Kitty is not a HE....Hello Kitty is a SHE. Mama, all 'grills' (no not a typo) are she's".

We are now frequented by the tooth fairy who I've been informed must only leave shiny quarters. I was told this morning after the tooth fairy came last night (left front top tooth) that the tooth fairy must have dropped something somewhere because there were only TWO shiney quarters and last time there were four. I had to remind her there were two teeth last time, but apparently that was a poor reason and not only did I have to hear about it today, but so did the radiologist, the tech, phlebotomist, lady at the bank, check in lady at the doctor, and the eye doctor. I was also informed the tooth fairy lives in the tree outside her window and uses the teeth to make piano keys (before you are overwhelmed with her amazing imagination please be aware this is all taken straight from a book one of sher teacher read her several weeks ago).

Anything with wings needs to have the name ".....fly" Examples: "Mayafly, hippofly, kittyfly, angelfly, horsiefly, etc" Most of the time these are actually animals made to look like angels, but wings=butterfly in our home. It is just a fact, live with it.

Butterflies, purple, rainbows, ladybugs, princesses, Hello Kitty, and Dora are all the most excellent things in the whole wide world.

When you sneeze, first cover your mouth and nose then announce as loud as you can, "I sneezed!" It is then a requirement that whoever hears you reply, "I told you, NO SNEEZING!"

When giving medicine or hooking up anything to the J-tube you can no longer call it her "tubie". It is now the "threebe" (this varies depending on her mood).

When the cat follows you around in an army crawl and his ears are pinned so far back you can't see them it is best to exit the room quickly and drop any food item you might be holding. Another good solution is to never be without a spray bottle or container of cat treats or better yet, just make sure your mom feeds the cat 3x/day so he can quit stealing your food! (note! the cat is getting a bit chubby, they other day he took off with an entire bananna and he's been known to eat a 6 inch subway sub)

Ok, that is a brief look into our lives......For those of you who came for more than just "fluff", continue on.

We went to Mayo today after last night was a repeat of the previous night compleat with nausea, tummy upset, coughing, etc, etc. It seemed her tube was misplaced since she was having formula out her g-tube and it was being fed into her J-tube, but after a quick trip into radiology early this morning everything seemed to be in place. We then headed up to Mayo and Maya saw the eye doctor who is putting her on a new plan to try to correct her eye muscle imbalance so we will be doing drops each morning. She is also getting new glasses which we should have in a couple of weeks, but those are just for her vision. We then went to lab so we could hear a bunch of people come in and out and discuss how they didn't see anything they wanted to "take a try at". Finally after a few trys and several people we got a bit of blood and labs were done. Then it was off to ultrasound for her thyroid and we came home. Long day, but it all went pretty well considering.

Thanks for checking in and please take a minute to sign the guestbook if it's been awhile. We love hearing from everyone.

Holly

Sunday, February 5, 2006 8:09 AM CST

It's been a pretty uneventful weekend around here. Friday Maya went to school while I went to a meeting downtown. Last year when I went to this same meeting I had her with me attached to TPN, feeding, etc and she was in such a different place than she is now. It is amazing what a change a year can bring.

Yesterday we hung out here and she played while I worked on some projects I've had started since Christmas. We started working on valentines then and almost finished those. She was doing great and feeling fine although in the morning she woke up with a sore throat again. I'm not sure what happened, but after the afternoon meds she came to me wretching time after time. She went and layed down on my bed to watch TV and fell asleep almost instantly...we even had company at the time so that was really strange as she thrives on an audience :)
She slept the rest of the night waking only to wretch (and sometimes not even waking for that) and cough. She sounds croupy when she coughs, but I wouldn't even say she has a cough. She complains of a sore throat and during the night was pretty hoarse when she was waking, but this morning is not quite so hoarse. When she was sleeping last night she was moaning and tossing a lot. I finally d/c'd her feed and hooked up her drainage bags and that seemed to help. I'm not really sure if this isn't all GI or if she just a cold. This morning she seems better as far as her sleepyness and she is more perky and at least wanting to watch TV even if it is while laying in bed. Hopefully things will continue to improve as we have some appointments at Mayo in the morning.

Tomorrow we are off for eye appontments, ultrasound, and some more indepth labs for endocrinology. I think something else is on the schedule too, but that's it off the top of my head. Should be a fairly easy day I think. Thursday we'll see the pediatrician.

Holly

Thursday, February 2, 2006 12:13 AM CST

Update: I know I promised an update last night, but things didn't go so well in the afternoon so I just came home and did nothing last night. Maya saw the endocrinologist who wants to do some further testing that I'm not sure is necessary at this time since it has all been done before with mixed results. The results would not produce any different direction for treatment and these are not issues that are of great concern since they are not problems she is currently dealing with. She does want to get an ultrasound of Maya's thyroid at some point to follow up on the lesion seen on her CT scan and some blood tests which we'll get on Monday after her eye appointment. The nephrologist was unable to see us after we waited nearly two hours. We were informed she might be able to "fit us in" if we waited another hour or so, but there was no guarantee so we left. Maya was tired and it had been a long day. We'll see her another day. This was disappointing since the real reason we went and all the testing done yesterday was for her. I am hoping that since the testing was already done that if something was that out of sorts it could not wait until we see her that she would notify us. See wasn't that fun??!!




I'll do a quick update and then update after our afternoon appointment. We are up at Mayo and came up yesterday. Maya is doing well and although she had another sleepless night (translate=mommy had another sleepless night as we were sharing a double bed)she is in fairly good spirits today. Yesterday though she was in rare form and when watching TV last night and there was a commercial for a purple mop on that was being demonstrated by a man. She informed me how neat it was and said, "Mama, what a cool purple mop...I have a good idea! I could get the mop and you could get the man!" That's my girl, always looking out for me. We also were unable to get into RMH yesterday night so we stayed at the Grand Kahler Hotel across from the clinic. They have this nice pool up on the top floor with a see through ceiling and lights that change colors. It's fun to swim up there, expecially when it is dark out. Well, we went swimming last night and I couldn't find her swimmies so I had found this pink foam think you use to kneel in the garden and thought she could use it as a kick board or floatie type thing (didn't really work). Anyhow, when we got out it was slippery and I was trying to get her to stand on it and I told her "stand right here" and pointed at the piece of foam so she wouldn't slip. She looked at me and with all seriousness said, "oh, I thought you said it was a 'pink thing-a-ma-bob', not a 'stand right here'" She is so funny sometimes. She did have a great time swimming and even put her head in on her own a few times and blew bubbles. She was jumping to me from the edge several times too which was something she loved the summer she was 4 and has refused ever since so that was fun to see. It was hard because the entire pool is over her head and as I said we had no swimmies so I had a double workout with her either on my back as I swam or holding her in the water. She can float alone on her back, but you have to be right there for the moment she realizes she is not being held and tries to sit up and sinks :)

That's about it. She has been running some temps this week, mostly in the afternoons and evenings, but nothing over 101. She's got somewhat of a hacky cough and sore throat at times, but it comes and goes too so I'm not too worried right now. This afternoon we'll see nephrology and endocrinology to get the results from this mornings tests so I'll update this evening when we get home with the boring medical stuff. I have some pics of swimming too I'll try to post.

Until later,

Holly

Sunday, January 29, 2006 8:06 AM CST

Maya's appointment Thursday went well. She's lost some of the weight she gained, but not all of it. Hopefully if she can stay healthy the next couple weeks she'll put it back on. She keeps catching little viral things here and there and I think they are just enought to knock her back a bit. Overall it was a good appointment though. This Thursday we're off to Mayo to see nephrology and endocrinology along with getting some labwork. It'll be a full day.

Friday we had beautiful weather, almost like spring. Of course the winds were at gale force, but other than that it was beautiful. I figured the butterfly needed to streatch her wings a bit as they seem to get a bit cramped it he winter.



The problem was over the top of her backpack with her pump she really couldn't fly so we had to get creative so she could sport both her wings which she loves and her pump which she requires.



She won't be winning any fashion shows with this one, but boy did she fly. She was all over the park, tree to tree. She'd go stand by a tree and say, "hide and seek....find me!" Then when I'd count and pretend to look (since she remained right in my line of sight the whole time) by saying, "where's Maya?" she'd yell, "right here! Over here by the tree!" Then laugh gleefully. It was a great day to be out and felt good to get out to the park again even if just for a short time.

We also went skating finally. This picture pretty much says it....My mother is finally making good on her promise to take me skating!



She was thrilled beyond belief and the look on her face was priceless. Unfortunately you don't get to see the actual look since I'm lucky I didn't kill myself just clawing my way from my chair to the rail on the skates so I could drag myself, hand over hand, around the rink. Maya on the other hand grabbed this little toddler trainer thing (looks like a walker) and skated circles around me--literally! OK, she's no Michelle Kwan, but after falling about 15x in the first 3 feet of rink she then only fell maybe once every lap or two and that was because she'd see someone balance on one foot or jump and she'd decide she had to try that too! She is alreading asking to go again so once I recover, we'll be off to the rink again.

Needless to say all that fun takes a lot out of someone. She's been pretty tired since then and fell asleep trying to eat the other day. I know there is a balance in all of this, but sometimes weather and timing fall in place and the fun has to be pushed together and balance goes right out the window. Yesterday we stuck to the movies and saw Glory Road--great movie. Maya slept as usual, but it was a good movie. We hung out with Jakey and Devin then last night so their parents could go to a party...Maya always enjoys they boys :) What can I say!

Thanks for checking on us. Until next time, goodbye from the Mayafly

Thursday, January 26, 2006 9:23 AM CST

Not a lot going on here. We continue with unseasonably warm weather and not a word of complaint from me :) I am glad Maya had a chance to play in the snow while we were home at Nana's this weekend though, but I'd be happy if that was all I saw of the white stuff this winter. Maya is still talking about her weekend and all the fun she had. I think the hilights of her trip were seeing Nana and I throw snowballs at each other, watching Nana scream when Papa put his cold hands on her back, and playing with Mr Chuck after church.

Yesterday was Maya's turn to share at school and she took her fold up map of the US. She loves to navigate when we are in the car and has a laminated US map she uses to tell me where to go. Of couse, if I followed her directions we would always end up in Florida by way of Washington, Michigan, Ohio, Wisconsin, and Tennessee since those are the staes she knows best. She also knows Disney is in Florida and therefore we should always end our journey there!

Medically speaking there isn't much new to report. We have finally been able to add back her co-q in small doses and she seems to be tolerating it ok. She seems to be really having a lot of trouble with reflux, hopefully that isn't it, but it seems like that is the case. There isn't really a lot more we could do for it as we've done all the standard treatments so I'm not sure there is any reason to pursure anything further, but at the same time it is important to prevent any damage it could do. We are enjoying not having to make many hopsital doctor trips, once a week is a luxury to us. Maya sees the pediatrician today and then goes to Mayo weekly for the next three weeks. Both Cincinnati and Mayo have refered us to Milwaukee for further GI follow up so we are waiting to hear from them as far as an appointment. Cincinnati felt it would be closer and they could do the same thing for us and Mayo felt that Milwaukee was better equipt to deal with the issues Maya was facing as far as GI. We aren't in a hurry to go anywhere as there are no pressing issues and the issues she does have are more chronic than anything and more just in need of someone to follow them on a periodic basis. I guess you get to the point sometimes you learn there are never any real answers, you just do your best to deal with the issues at hand and continue on. Maya is such a good example of this. She just pushes forward enjoying life, not letting anything stop her. Sometimes it is time to quit looking for answers that aren't there.

We are in such a better place than just a year ago. Maya is getting 100% of her nutrition through her j-tube feedings. She takes some bites by mouth and some days even more. She is able to fight off infections on her own and you can measure her time at home in weeks and months instead of hours and days. Just think where another year could lead?? I could be saying we are measuring our days home in years and not months! (ok, now even I'm chuckling, but stranger things have happened!)

Anyhow, thanks for enduring Philosophy 101-The Life of Holly. I don't know what got into me today, must be the free time I'm getting when Maya's off to school :) Thanks for checking in on us.

Holly

Monday, January 23, 2006 5:19 PM CST

We are back home after a nice weekend at Nana and Papa's. Maya did really well on the car ride both ways and the weather even cooperated with us for the most part. Friday we ran into some snow/rain mix at the very end of our trip, but Saturday morning we were treated to a yard full of the white stuff. We haven't seen much of it this year so it was nice to get in a few snowballs. Maya especially enjoyed seeing Nana and Mama throw them at each other! Sunday we went to church to visit with our Cornerstone friends, then today we headed home. It was so nice to see all our friends again. Papa could only be with us for a little bit since he had to head back to Tennessee, but Maya enjoyed every moment.

It was nice to enjoy some relaxing time with family and Maya even decided to sleep 2 out of 3 nights which for her is pretty good! She's still coughing a bit, but feeling lots better than last week and really doing quite well. She's looking forward to school tomorrow and telling of her weekends adventures.

Thanks for checking in.

Holly

Thursday, January 19, 2006 12:39 AM CST

We've had a nice uneventful week since Monday. Monday and Tuesday night she didn't sleep much at all and most of Tuesday night she spent reciting either Chicka, Chicka Boom Boom or Green Eggs and Ham which she has lovingly entitled, "Sam my Friend, Sam I Am". I have to say, hearing these lovely rhyming stories over and over in your sleep can create some very interesting dreams. Last night was better though and we both got some sleep.

Tomorrow is swimming day for school so Maya is looking forward to that. She loves to swim and although she tells me often she'd swim better if she just "had a tail like Ariel" she is able to float and enjoys the water a lot. She does not like to get splashed, but loves to be the one doing the splashing.

Today she's in a funny mood, laughing at about everything that is said or done. It's always nice to see her this way and even her teachers at school noticied what a good mood she was in today. I love it when other people get to see the happy kid I'm use to seeing. Sometimes it takes her so much energy to process what is going on that you don't really get the whole "Maya effect" when you meet her.

I guess that is about it, not too much else here. We are off to Michigan this weekend so I most likely won't be updating until Monday again. I hope everyone has a great weekend and thanks for checking in on us.

Holly

Monday, January 16, 2006 6:45 PM CST

So much for relaxed and boring this weekend! Actually it wasn't so bad, just not as low key as I would have liked it to be. Saturday Maya wasn't feeling well with a sore throat, cough, etc. She just layed around and we didn't do much although we did catch Narnia although she slept through much of it. It was nice though since there was hardly anybody there. Sunday she was having more of a rough day and stayed in bed until about 2pm. She was awake some of the time, but just layed there and watched TV. She did get up for awhile in the afternoon, but then her tummy started to bother her and she decided it would be a better idea to lay down again. She threw up a couple of time and then I tried to give zofran and realized her J tube had flipped up into her tummy again! I swear she has more trouble with those tubes. Anyhow, nothing that couldn't wait until morning since we don't feed overnight anyhow. This morning we got up and went in to deal with that and spent our day at the hospital getting that taken care of. All is well now, Maya is doing well although she isn't really feeling 100%. She perked up for awhile this morning, but I think it was more the fact we hadn't been feeding her than anything. She's tolerating feeds, they just seem to take her down a notch.

I'm sure she's going to be glad to get back to school tomorrow since we spent Friday and Today at the hospital so she hasn't been there since Thursday. This is a swimming week which she's looking forward too on Friday and we are hoping to head back to Michigan this weekend if our week continues on with no other issues coming up.

Overall, all is well here, just some bumps in the road. I better get going since I can hear Maya arguing with the cat that he is not letting her in the bathroom to brush her teeth. "Pookie, would you please excuse me?" "Mama, Pookie won't let me in the bathroom, he's not being kind to me." I guess that is what only children do....tattle on the cat.

Holly

Friday, January 13, 2006 6:40 PM CST

What a busy week we've had. Wednesday was Maya's IEP for school. For those of who don't know, this is a meeting with all involved people at the school to determine Maya's goals and needs for the next year. For her there are several people who are just seen on consult so they come to this meeting just once a year. The meeting went well. We set new goals, talked about the ones she met from last year, talked about those she didn't and reworked her day. She is going to start going to school three hours each morning and not having a homebound teacher except for the days she is too sick to go in at all. Hopefully this will give her some more consistancy and build her toward a regular school day. She will be in her classroom for two hour and then a third hour will be working on her IEP/educational goals. She also receives speech/language and adaptive PE during her school time. Maya's made lots of progress this year with her academic skills so it's been exciting to see these changes in her.

Thursday she went to school for those three hours and Mama had a chance to get some errands done without hauling her around with me. Nice for both of us I must admit. After school we hung out at home and since it was beautiful out in the afternoon we took a walk with one of our friends and her puppy. Maya enjoyed getting some sunshine and I enjoyed the chance to get some outside exercise mid-winter. I have to admit I'm getting spoiled this winter with the way the weather has been.

Today was her CT scan and follow up with the doctor. Maya chose to have an all nighter last night so getting up and ready in time wasn't a problem. She was a trooper even through it took a few tries before anesthesia was called and came to get an IV started. She did great with the scan though and had to hand out hugs all around when she was finished. We then headed off to say "hi" to some of our friends around the hospital and have a treat in the cafeteria. Maya had her heart set on a doughnut with sprinkles and actually took a bite or two of it which was awsome for her. She also had taken her autograph books and pictures from Disney with her to share and enjoyed letting all her friends look at those. We then saw the pediatrician and get this....drumroll please.....Maya GAINED 2 lbs!!!!!! Hard to believe even for me, but she did it and that was with the issues we had and not increasing feeds so we feel like we are at a good place right now and don't need to push her any further. Labs were pretty good and will get rechecked in a few weeks to make sure the one that was not in the normal range doesn't keep going higher. She is just doing really well right now and it is nice to see everything going smoothly for a change. After our big day at the hospital we stopped to visit with one of our hospital friends on the way home at her home and Maya enjoyed investigating everything in her house and playing the piano. As Maya said...."It was a GOOOOOD Day!"

No plans for the weekend. Hoping to go ice skating if we can and maybe catch Narnia if it is still on. Thanks for checking in on us.

Holly

Tuesday, January 10, 2006 1:47 PM CST

Four shiney new quarters! Yep, a visit from the tooth fairy!

What a day we had yesterday. Maya had to go to the dentist and ended up getting two teeth pulled! She was a trooper and did so well. They pulled the ones on each side of her two front teeth on the bottom. She has so much crowding due to her jaw size that things are just not fitting. He said she'll need several more pulled and need to see ortho in the next 6 months or so to start dealing with these issues, but for now just the two teeth had to go.



Sunday we just hung out after getting home from church, nothing too exciting. Today was back to school and then she's had her homebound teacher both yesterday and today. Maya's been spending a lot of time playing with her babies and building lego's lately. She kind of goes in spurts. Most of all she always had to DANCE! She will wind up her jewelry boxes and open them all up so that they start to play and then spin herself into a frenzy in the living room. Of course, that just leads to the following.



Anyhow, all is well here. Her IEP is tomorrow and Friday is her CT and doctor's appointments. Thanks for checking in on us.

Holly

Saturday, January 7, 2006 5:01 PM CST

Not much exciting going on here. Thursday night Maya had a really bad time with nausea and wretching. She was really distended so venting, heat packs, and xofran were in order. She woke up yesterday feeling much better and with a much flatter tummy. Hopefully that will hold us for awhile. Yesterday we went to Mayo and had dry roads with no precipitation for a change. It isn't too bad going when you don't have that to worry about. She saw neurology in the morning and the only change we made was to restart her co-q10. Hopefully that will work out ok for her and won't irritate her tummy too much. We are starting back on a much smaller dose so maybe that will help too. We killed some time hitting our favorite Rochester "treasure hunting" sites including their Goodwill and Savers stores. No treasures to be found, but we had fun trying. In the afternoon she saw the sleep specialist (neurologist also) and we made some modifications to her bedtime routine, etc. He sees several patients with restless leg and had some ideas to add the medication she was already on for this. Of course, we tried these last night and they bombed, but we'll give it another try tonight--if I can stay awake. Last nights try led to an almost all nighter for the both of us!

Today we went to see Cheaper By the Dozen 2 and checked out a few clearance sales from the holidays. Really no good bargins on anything we needed, but fun none the less. I didn't want to keep her out too long so we only hit Hobby Lobby and then came home. She enjoyed the movie and even watched part of it. Usually she does her Magna Doodle while I watch, but she looked up more then usual today and even laughed at a couple of things. I never know what type of movie will strike her as interesting since historically she only likes to watch things she finds funny (thrillers and suspense...go figure!) I think she just likes all the action. Anyhow, we enjoy getting out whatever the motivation.

Right now she is watching Hello Kitty...her new obsession. Not sure where it came from or how long it will last, but it's funny how she picks up on stuff she really isn't exposed to much. Something must trigger her interest and from talking to her it's mostly about the "bow". She was wondering today if Hello Kitty has all colors or just red in her closet.

Thanks for checking in on us. This week is Maya has a dentist appointment to check on some issues with a totally out of place tooth, her IEP and then her CT of her chest and neck at the end of the week.

Holly

Thursday, January 5, 2006 2:04 PM CST

Tuesday turned out ok after a long nap and some quiet play time. Yesterday was a good day overall. She did great after school and even did her homebound instruction in the afternoon. Not sure if that is because I had her lay down after school and rest or just the way the day went. Today was more like Tuesday and she is sleeping still right now. I forgot this is the way things were when she was doing well before the whole GI thing flared a year and a half ago. It's really not so bad, just have to get use to her daily ups and downs and not get too excited about them. I am figuring out what is causing her belly pain more and more. I've started keeping a journal to figure out what foods seeming to be the problem so hopefully I can find some sort of pattern to her periods of belly pain. The last two days have been pretty good in that respect and I just went up on her feeds again without too much of a problem.

Tomorrow is our trip to Mayo. She'll see her neurologist and then the neurologist in the sleep disorders clinic. She's seen them both before so it shouldn't be anything new except maybe a tweak on her sleep meds and it will be nice to share all the progress she's made with the neurologist. This is the first time in quite awhile I haven't reallly had a huge list of things to address at the appointment. In fact, it's times like these you wonder why you are going at all except it's nice for them to see what healthy is once in awhile. We do have to discuss her Co-q10 again, but that's not really a big deal.

Maya's settling in nice with all her new Christmas stuff and staying busy playing lots of the time. I finally got things put away and need to get some shelves I've had to hang since last August hung. Just a little behind don't you think? Not too much else to report. Thanks for checking in.

Holly

Tuesday, January 3, 2006 11:52 AM CST

TOO MUCH VACATION???

Last night Maya cleaned herself and our bathroom very well. Unfortunately she was in the tub with a new bottle of Clean Shower at the time and I heard sounds of happy playing and failed to check on her soon enough! The Clean Shower bottle is now empty, the tub shiny, the mirror shiny, her body clean (due to multiple washings in attempt to remove clean shower from her hair, skin, other body parts), and most of all her eyes a bit bloodshot from the direct hit they took from the spray bottle and the reason I found out what was going on when I did! She went from joyful playing to traumatic SCREAMING in a matter of second. She's no worse for the wear though and extremely clean as is my bathroom.

I never really journaled about our Christmas trip home and wanted to share this picture of Maya patiently waiting for her turn to open gifts Christmas morning at my moms.



I've added pictures of her and her cousin to the photo page too. The girls had so much fun together playing and dancing. They both received princess costumes so we were graced with Sleeping Beauty and Snow White for an entire morning.

Maya had a wonderful time with Nana, Papa, her Aunties, and Uncle and her cousin over the holiday. We were so blessed by being able to go home and spend time with everyone for a few days and I'm so thankful she was healthy enough to do so. I also want to thank everyone who made our Christmas so special in so many ways. I will say we were richly blessed and thank you to everyone.

Today Maya returned to school, although she did have school yesterday with her homebound teacher also. Today took it all out of her, hopefully just since she's has "too much vacation" and has been out of the loop for a few weeks. She came home, curled up on the couch, and fell asleep. She was complaining of her belly too so I vented her and this seemed to relieve the discomfort some too. Hopefully she'll sleep it off and feel better this afternoon. She was thrilled to return to school though and told me on the way home, "it was special and really, really exciting Mama". Like she's never been there before!

Thanks for checking on us. No appointments until Friday this week so we have a few days to breath then we are off to Mayo for a couple of visits.

Holly

Saturday, December 31, 2005 2:53 PM CST

Most of our last day at Disney was spent running around and doing everything she loved "one last time". This was difficult since she pretty much loved the entire place, but we had a good time trying. While at Epcot we traveled the world and met up with Piglet and Eeyore in the United Kingdom.


We also saw Alice while we were there then moved on to Japan where Maya had a mission to explore the Hello Kitty store from top to bottom. I have to say we went to Disney and the only stuffed animal she came home with, or even wanted for that matter was a Hello Kitty. As we continued around the world we came to Morocco where we met up with a Genie. He then introduced us to his good friends "Al and Jazz"


We hurried around the rest of the world and caught the monorail over to the magic kingdom. Here we were greeted by the big guy himself, Mickey Mouse! Maya was still on her mission to fill THREE autograph books so he indulged her a bit.


One of the things we had not yet done was to ride the carousel so we rounded the castle to do just that.


We spent the rest of the afternoon alternating between the need for speed and pure fantasy as we explored the park again. Then it was time for dinner with Cinderella so we headed off to another resort to do just that. Of course, me being me, we were over an hour early so we explored the hotel which had a gingerbread house two stories tall and with an actual shop set up inside. It was real gingerbread too. We went out and looked at the beach, played in the sand, and made some wishes with pennies in the fountian.


Dinner was wonderful and we were guests of the Fairy Godmother, Cinderella, Prince Charming, and two very dear litle mice. We finished up our night with the Epcot laser and fireworks display and front row seats. It was a really magical trip and was so good to see Maya have such a wonderful time after the year she just had. On Friday we headed home arriving back in Wisconsin just before midnight. We hurried home before our van turned into a pumpkin and our clothing turned to rags.

The past three days have been a brief look at our trip. It was wonderful and we are so grateful for the opportunity we had. Maya continues to do well and we made some progress with her feeds today going up 5cc/hr (1 tsp). So far, so good. She's enjoying her bounty from Christmas and I rarely hear a peep from her all day long as she's lost in play. A good place to be when you are seven.

Praying you all have a Happy New Year and wonderful, happy year to come. As always, thanks for checking in and if you haven't signed the guestbook in while.........there's always room :)

Holly

Friday, December 30, 2005 9:05 AM CST

Yesterday Maya had her appointment with the pediatrician. Her weight has stayed the same so at least she is maintaining this. We are going to try to up her formula rate again to see if we can get her to grow some now. Her potassium and magnesium were low, but that is what's been happening so we are increasing her potassium and just going to watch the magnesium. Her hemoglobin is behaving itself for a change so thats nice to hear. When we got home Maya and I exchanged Christmas presents and I began the cleanup/overhaul that is required post holiday to put things away and find new homes for everything. Things are going very well here and it is so nice to see Maya doing well for a change.

Now for more on our Disney trip (if you missed the last update click on journal history and the beginning of our trip is there).

Maya loved the teacups so much we rode them at least three times a day. Although her favorite rides involved high speeds and we rode them many times too, the teacups allowed me to actually use my camera while on the ride :)


We started our morning on Wednesday with a character breakfast. It was more about the characters than the eating since Maya really doesn't eat much at all, but was fun anyhow. Minnie, Goofy, Chip, Dale, and Pluto were there and since we were at the Beach Club they all dressed in their beach clothes.


Our goal Wednesday was to find Ariel and get her autograph. She is one tough princess to find! The line for her was almost an hour, but Maya waited patiently since she LOVES her. When she finally had her turn Ariel asked where Maya was from and Maya answered, "Wisconsin, so I couldn't swim here because I don't have two tails like you". The things she comes up with sometimes!


We usually ended our day at Epcot since we could walk home from there. Maya had to ride Test Track again each time we went past, but on Wednesday we enjoyed the candlelight choir and orchestra. They performed a Christmas concert which included a guest celebrity telling the Christmas story. Maya sat there and conducted along with the conductor for the entire hour the concert took place. She loves music so much that she was just transfixed on the whole scene.


As always thanks for checking in on us. We'll update again with the rest of our pictures in the next day or so. Take time to sign the guestbook if you get the chance and haven't in while...we'd love to hear from you.

Holly

Wednesday, December 28, 2005 3:37 PM CST

We are home! What a whirlwind the past two weeks have been. Hard to believe that two weeks ago today she was admitted to the hospital and since then we've come home, gone to Disney, come home, gone back to Michigan, come home and now we are STAYING PUT :) I want to update about our trip and our Christmas so I thought I'd just do it over several days so I can add all the pictures I want to share.

We were up early and at the airport by 4:30am on Monday. After wonderful flights and flawless connections we arrived in Orlando around noon and were at our hotel by 2pm. We stayed at the Beach Club and were able to walk to both MGM and Epcot from our hotel. The Magic Kingdom was just a short monorail ride away so using her wheelchair was a breeze. The first thing we noice when we arrived at the hotel was the chocolate carousel in the lobby.

We spent our first afternnon at MGM and silly Mama forgot the CAMERA!! Maya enjoyed seeing the Little Mermaid show and Playhouse Disney on stage before riding the Twilight Zone Tower of Terror which she loved. She wouldn't ride it twice though because she said, "those people need to be quiet and quit hurting my ears!"
On day two we headed to Epcot and met up with Maya's pal Nemo at the aquarium.

She really enjoyed this and we also hit Sorin--a ride that is like hanggliding over California and Test Track because Miss Maya has a need for speed. She giggled though the entire ride which was long since we rode it twice in a row.
Next we headed over to the Magic Kingdom to see who we could meet up with. We entered the park and saw characters right away. Maya was so into getting autographs it took three books to get us through the week.

We went to Mickey's town next and met Donald selling trees at his roadside stand.

We rode a few rides including the Tea Cups which I have to admit, my inner ear is no longer young and all I could do is focus on the ride being over soon....but Maya loved it so we rode THREE times!
We ended our day with a wonderful Christmas fireworks display and then off to bed since we knew there were two more big days ahead.
I have to say her favorite thing was still meeting the princesses which is where the picture up top came from. I think she could have talked to them all day. She was so funny when she talked and was so genuine with them, so sure they knew all she'd been up to and how she'd seen their movies, etc.

I'll add some picture to the photo page too and update again tomorrow with the middle of our trip. Thanks for checking on us.

OH! as a side note....Maya did wonderfully medically speaking and we were able to work through the few issues that did come up.

Holly

Saturday, December 24, 2005 11:33 AM CST

We are home! Ok, only for a few minutes here and then we are off to my parents in Michigan for the holiday. You'll have to wait a few more days for the Disney update and pics, but they'll be up Tuesday or Wednesday. Maya is doing well and we are dealing with issues as they arise, but so far nothing we can't handle. Praying you all have a Merry Christmas and thanks for checking in on us. If you want to give Karla a hard time for not updating for us...feel free :). Really though, she does so much and cared for Pookie, maned the mail box, etc while we were gone so she's a jewel to us.

Holly

Sunday, December 18, 2005 2:40 PM CST

Maya is still doing well and our countdown is on. She keeps reminding me, "one more sleep until I get to see the princesses!" We have to get up bright and early to leave with a flight just after 5am so I'm getting everything set tonight. This morning she woke up not feeling well, but maybe that is because "waking up" is putting it kindly. She did not sleep Friday night at all and only slept from 4am-8am this morning. Oh well, all is good now and she is doing great. Feeds have been going really, really good....in fact better than they have in a long, long time. I really think those extra fluids we gave her helped her through this viral episode quickly and with no lasting issues to overcome.

Friday, December 16, 2005 1:51 PM CST

Hello everyone! We are home from the hospital again. I have to stay staying just a few days is much nicer than what we've been use to this past year. Maya started getting sick on Tuesday afternoon and by evening was having full blown GI symptoms with vomitting and nausea. By Wednesday she was lethargic and things weren't looking much better so I took her in to the doctor and she was admitted for dehydration. Now she is tanked up and ready to go! She actually looks and acts better than she had since her last discharge so I feel like we are in for a long run at home again.

Maya is glad to be home and on the way here told me "maybe this time we can go home for a "really, REALLY long time!" She was also such a good sport about missing Disney on Ice and her trip to Disney World (for the 4th time this year I might add.) She is such a roll with the punches type person I'm hoping she'll rub off on me over time. Good news is we were able to reschedule our trip for Monday of next week. It has been over a year since we first planned this so I'm hoping we'll actually get there before she's 25!

If all goes well next week we are still going to try to head home next weekend to Michigan. It just may be a shorter trip then we'd planned. Things will have to all fall into place too with how Maya handles traveling and her health, the weather....you know those variables you can't control. Today one of the nurses mentioned getting our "ducks in a row", but followed it up with the fact our ducks don't seem to really cooperate and line up the way they are suppose to.

Maya funny:
Last week we had lunch with Mix Karla for Maya's birthday and Jakey was on the couch. Maya propped her plate on his legs and looked at both of us and said, "look, Jakey makes a really good plate holder!" What a kid!
She also went to see Santa last week and when he asked what she wanted for Christmas she said, "I don't know, I have a doll and some movies, What do you want to get me?"

Thanks for checking in on us and for all the wonderful notes in the guestbook. It is always good to hear from all of you and don't apologize for the little notes or e-mails asking what's up since I haven't updated....makes us feel loved that you noticed....besides with only Maya to pick on me I'm always in need of a little good natured teasing!

Holly

Sunday, December 11, 2005 2:36 PM CST

UPDATE! Maya is in the hospital again. She started throwing up on Tuesday and after seeing the doctor yesterday, she decided to have her admitted for IV fluids. Hopefully it is just flu and she can get back on her feet in a couple days.

I can't wait until tomorrow to update about what a wonderful party some friends of ours gave Maya today for her birthday! After church today Maya's 7th year was celebrated. She was thrilled and everything was so perfect for her including the "cakeless" cake. If was so great to not have to deal with food issues or people who don't understand Maya and just watch her enjoy herself. She's so tired now, but had an awsome time.



Here she is blowing out the candle on her princess cake!



With Cinderella, Snow White, and Sleeping Beauty!



With Jakey and his family



and with some more of her princess friends!

Tomorrow is actually the big day so please stop by and leave her a message. She has school tomorrow morning then a quiet afternoon celebrating with mom. :) Thanks for checking in on us. I'm hoping to have more pics later this week so I'll post them when I get them.

Holly

Saturday, December 10, 2005 4:36 PM CST

This will be short today...nothing much going on here. Maya went back to school yesterday and did well. It was a swimming day for adaptive P.E. and she loved it. She's not been swimming much at all for the past 18months so she was thrilled to be back in the pool. She actually was able to float on her back all on her own, still hates for her face to be wet though. After swimming she pretty much slept her way through the afternoon until her teacher came around three. They did school and then she was asleep again for the night. Sometime during the night I looked over at her and she was covered in blood (not a great thing to wake up to!) She was still sleeping and coughing in her sleep so I woke her up and cleaned her up to see what was going on and it was just a bloody nose. Once it stopped she was back to sleep until this morning.

Today we've just been hanging out. Maya's been doing puzzles and watching Christmas movies. I've been trying to get things cleaned up and ready for Christmas since we are going to try to go back to Michigan for the holiday. Truthfully I still have boxes to unpack from the hospital.

Monday is the big day for Maya.....the big 7! She's excited although I'm not sure she actually knows which day it is. Thanks for checking in on us. I'll leave you with a Maya funny!

Friday at school they were talking about kids eating with chopsticks when Maya pipes up and says she uses chopsticks......on her CHAPPED LIPS! I just love the thinks kids come up with :)

Holly

Thursday, December 8, 2005 12:54 AM CST

Maya is doing pretty well...really well considering she's been home for 15 days and that is the longest since last June. Yesterday was her clinic day and she had labs and x-rays. There were some small issues with her labs, but we increased her potassium and will watch the other numbers. Her weight was up again by a quarter of a pound and we'll take what we can get. Feedings are going pretty well for about 5/7 days. The other days just seem to be days she's either pushed herself too much or for some reason things don't flow so smoothly. Anyhow, overall they are good and she is reaching her goal for feeds. Her x-rays were good overall, it will most likely take the CT scan to see if we really attacked and got rid of the lung nodules like we should have. She won't have her CT until January so we should have a nice break here over the holidays with just one doctor's appointment per week.

While we were at the clinic yesterday Maya delivered her Chirstmas cards she'd made for several of the departments. We "lived" around there so much this year they made a big difference in our day to day life. Everyone took such good care of her and tried to make her life a little easier.

Tuesday evening we went to a Christmas party. Maya got to see Santa and we sang some carols, visited with other families, and did a couple of crafts. Overall it was a really good time. Here's a picture of her visiting with Santa.

and here is one of my goofy girl...when you don't eat candy you can at least play with it!


Yesterday she finally put an end to her sleeping strike, but unfortunately it was because she wasn't feeling well. She finally got to sleep around 4am after wretching and throwing up a few times, but she did sleep until almost 10am which was really good for her. I think she's really been pushing herself and her body just needs a chance to catch up. She seems better this afternoon so her teacher will be out to do school here in a little bit.

A Maya funny:
Not only does Maya get most of her Christmas carols mixed up with words and tunes I apparently haven't gotten her to get a good grip on her Bible stories either. This morning she was reading her picture Bible to her baby and asked if she wanted to hear the one about the "Man who was swallowed by the dolphin" or "Little Bo Peep with Jesus sheep"! What a riot.

Thanks for checking in on us.

Holly

Tuesday, December 6, 2005 12:26 AM CST

I can't believe how cold it has gotten. This morning when I took Maya to school at a 8:45 it was only -5 degrees. Yes, that is a negative sign before the five. Maya told me as we walked out to the van that I had told her just yesterday that I would take care of her and never let her be cold...well, I guess I should have explained myself a little better! She was so upset that her nose was cold....it was one of those so cold you cough and your nose hairs freeze type of mornings.

Good news is Maya continues to go to school each morning from 9-10:45. She is loving being with her class and is also getting her speech, physical, and occupational therapies. Friday she will go swimming for adaptive PE and as most of you know this is her favorite thing in the world to do. Speaking of favorite things she has decided she really needs to learn to ice skate so that is on the agenda for the first of the year. Things are too busy until then, but it should be fun. Now, to find some skates!

Medically speaking she is doing pretty well. We had a really rough Saturday with vomitting, bloating, lots of dumping through her g-tube, and overall not tolerating much of anything including movement. We were able to get her through it though and she's doing better. It is such a fine balace between taking care of her medical needs and allowing her to just be a kid and do all that goes with it. The two don't always agree. Tomorrow will be our weekly pediatrician appointment and we'll see what her weight and potassium are doing. She is tolerating the oral potassium really well so that is awsome. We also have her J feeds up to 50cc/hr which is the highest she's been in well over a year.

Only one more week until Maya's birthday and she becomes that, "reallly big number!" She is so excited and although I don't think she really knows when she'll be having her birthday she knows it is soon and will tell you "it is twelve, twelve, ninty-eight". I guess the lab coming in morning after morning and asking you to spell your last name and birthday starts to sink in after while.

Right now she is laying on the living room floor watching Sesame Street Christmas movies. She hasn't slept since Sunday night and then was up abotu 3am. I'm hoping she'll fall asleep while watching TV, but it isn't looking that way. Not sure what's up....not that she's ever been that good of a sleeper, but she was complaining her tube was hurting her last night. Not sure what this means, but I gave her some motrin before she laid down this afternoon and at least she is resting.

Thanks for checking in on us.

Holly

Saturday, December 3, 2005 3:47 PM CST

Let it snow, let it snow, let it snow!!!!!!!

It has snowed here on and off for the entire week. We get a little bit each day, but nothing too exciting. Just enough to keep things white and the roads slushy for the most part. I guess winter is here to stay.

Yesterday was a great day for Maya. She went to school in the morning and then had her teacher come in the afternoon. She isn't spending much time at school so she is getting homebound services too here at home for the academic stuff. We also had to go in to see the pediatrician in the afternoon yesterday and had good news to report! Her weight is up by a pound and to top it off her electrolytes are back where they need to be. It was so nice to get some good news for a change. We'll go back on Wednesday of this week again to follow up.

This morning we had a reality check with a very distended belly and nausea. Right now things seem to be on the upward swing, but as always Maya likes to walk a tightrope and keep me on my toes. Right now she is in the other room playing at her table. She sits there most of the day playing and "doing school" or so she tells me. She loves to be busy. A welcome change from just laying on the couch this morning clutching her bucket.

A lot of Maya's time lately has involved discussing Christmas and her birthday. "I'm going to be a very big number, Mama". She's looking forward to seeing her Nana and Papa at Christmas and playing with her cousin Autumn again. She also has a visit to Santa on her list of things to do. I on the other hand need to get in gear and get Christmas cards in the mail. We do have our decorations up early this year, "just in case" we only have limited time here at home.

Not much else to report. As always thanks for checking in on us!

Holly

Thursday, December 1, 2005 2:28 PM CST

What a busy week we've had. Maya has been continuing her potassium suppliment and will follow up tomorrow with the pediatrician for her labs. She seems so much better this week and is really back to herself for the most part. I'm sure you can see that by the picture here on the front page of her and Pookie. Tuesday she started back to school just for speech and then yesterday she went back for about 2 hours for speech and some time with her class. She is still receiving homebound instruction too so that she can reach her goals for the year. Yesterday we went to Mayo and saw the GI doctor. She really feels Maya needs to go to Milwaukee to see a GI doctor there since they do motility stuff there and Mayo doesn't do this for kids. I'm waiting to hear back from here, but hoping we could wait until the first of the year to go. I think a lot depends on her labs tomorrow and her weight. She is down to 35lbs so that is fairly significant loss for her, especially considering how she's grown this year. She really looks good though and is playful and as much "Maya" as ever.

We also had an issue with her GJ tube yesterday so she is now sporting a brand new one. The one she had BROKE. I've really never seen one do that, but there was a big hole in it we couldn't close up so she got a new one. She was so brave and did it without any sedation which was a first. We really didn't have much of a choice, but she did great. So like her to add some excitement to our afternoon.

During the night we got some snow so she was happy to get to wear her boots today too. She loves winter as long as it doesn't involve being outside for more than five minutes or her getting wet at all. She is such a princess sometimes. Of course she is looking forward to her birthday and Christmas and has managed to rearrange our tree several times already this week. :)

Thanks for checking in and as always, we love to hear from you.

Holly

Monday, November 28, 2005 5:58 PM CST

Maya is feeling so much better today, it is amazing what a little fluid and potassium can do for a person! I just wanted to share a picture of the cutest little Mayafly who came to visit today..


Wow, the last two days have been a struggle to keep Maya home and hydrated. She did it though. We pushed and pushed and managed to improve things from Friday to today. She's still needing lots of fluids which are hard to replace very quickly and her potassium is low so we are adding a med for that, but she is holding her own. We'll recheck her labs next Monday and go from there to see where things stand. She'd been to the point she really wasn't putting out any urine and now she is so we are making headway. Most of our weekend was spent with her having belly aches and nausea from the extra fluids, but this afternoon she's more alert and watching a movie.

I can't believe how dark it is outside. By 4pm today it was starting to get dark out. It is hard to stay motivated to get things done once the light is gone. This could explain why I'm still trying to get my stuff unpacked from the hospital and why the place is a mess. Oh well, in time I suppose.

We did venture out to see "Yours, Mine, and Ours" Saturday. I always liked the origional and this one was good too. Maya slept through it as usual, but it was nice to get out and do something fun anyhow. I'm going to try and update the pictures later tonight. Thanks for checking in.

Holly

Saturday, November 26, 2005 6:54 PM CST

What a busy three day's since we've been home. First off I had to get use to our routine of meds, feeds, etc. Add to that the fact we had company from out of town and I had to squeeze in a bit of Black Friday shopping and it rounds out a full three days. Thursday my brother and his family came for Thanksgiving and his little girl is four. The girls loved playing together and since we were in the middle of their birthdays they shared their gift opening together too. We just cooked dinner here and let the girls play and eat while we hung out. Friday I hit a few sales, but was home by 8am. Maya hadn't slept since we'd been home but was still going strong. She wasn't quite herself, but closer than she has been. Friday afternoon she had to go in to see the pedi and had labs. Her labs were not so hot and she looks dehydrated and has a low potassium among other things. We are trying to push fluids through her J in hopes of correcting things, but I have to admit it isn't going too well. This morning we met my brother and his family for breakfast before they headed back to Ohio and by the time it was over Maya wasn't feeling so hot. It seems we are back to some of her old metabolic issues now that we aren't supporting her with IV fluids and/or TPN. I'm hoping her body will adjust with time and we can work through things. She slept again this afternoon and is ready for bed already tonight. (oh, I just looked and she is more than ready...she's asleep!) Monday we have to go back to see the pedi and repeat labs then Wednesday back up to Mayo to see GI. NOT looking forward to making the trip so soon, but on well, we do what we have to.

It was so nice to be home for Thanksgiving and there was so much to be thankful for this year. Maya's home and doing well, we were with family (Nana, Papa, and Auntie Jessy were very missed). This has been a very hard year as far as hosptial stays go, but we've also been so blessed by the people we've met and are too numerous to metion, but include all our wonderful nurses, Maya's doctor, our friends, our church, our family, and all the other wonderful people we've met on our journey.

Thanks for checking in...check out the new pics.

Holly

Wednesday, November 23, 2005 2:35 PM CST

WE ARE HOME!!!!!

I have a few random thoughts to share. The first is why is it the entire time you are in the hospital your sanity slowly oozes out your pores until it is totally gone, but one step outside those doors and BOOM! your sanity comes back in one fell swoop? Just a thought to ponder. My other thought is that the stretch of I-90 between LaCrosse and Rochester is under some sort of spell. If it isn't windy, rainy, snowy, or a combo of the above the road most likey wouldn't even exist! I can't remember the last time I drove either way on it that there was not some issues with the weather.

On other notes. Maya is doing well and we will follow up with our pedi here in town on Friday then with GI in Rochester on Wednesday. There are several issues that continue to need watching, treatment. We are still finishing antibiotics for the bacterimia and thrombophlebitis and also have to continue with chest CT's and x-rays to monitor the nodules in her lungs. There is also a spot on her thyroid we need to determine what it is and if there is anything we need to do about it. Feedings continue to be an issue although after speaking with GI we have a good handle on things at this point. We are replacing ounce for ounce what she loses through her gastric drain and seeing how that works. Her weight is down, but that is to be expected with the degree of sickness we were dealing with.

Maya is thrilled to be home and anxiously awaiting the arrival of my brother, neice and SIL for Thanksgiving. They'll be here tomorrow then have to leave Saturday morning to return home. They are in the process of moving cross-country so they have lots of work left to do too. Nothing much else. I'm hoping to add some pics later this eve or tomorrow after I get things unpacked and settled. Thanks for checking in and have a wonderful Thanksgiving.

Holly

Monday, November 21, 2005 7:59 PM CST

Maya's CT was much improved. We are looking at going home sometime at the end of the week. Nothing new between now and then is planned so I am going to take a break and not update for awhile. I will update if things change, but in the meantime thanks for checking in on us and we hope you have a wonderful holiday.

Maya and Holly

Monday, November 21, 2005 9:45 AM CST

Another Monday! Not much more to say than that. Maya went down for her CT scan this morning, but we haven't heard back on how it compares to the scan from last week. I suppose based on this we will be able to form some sort of plan as to length of stay, treatment, and replacement of her GJ tube. If I get news later then I'll post and update. We missed the docs on rounds today so I'm not sure when we'll know anything today.

Maya seems to be feeling OK today. Not the best I've seen her, but doing fine. She's ready to get out of here too and get back to the everyday life of a six year old. It is still challenging to get meds in her tummy at the same time we are trying to feed just due to the volume she is able to tlerate,b ut other than that she is tolerating her feeds and doing well in that aspect.

We had some visitors on yesteday and a round of Bingo in the playroom. Helped the day go faster. Well, a little faster anyhow. We did go and get some movies upstairs at the library and watched Ice Princess last night. Maya loves ice skating so she really liked the movie and wanted to watch it again, but it was getting late so we'll have to watch it today before it is due back.

Thanks for checking in.

Holly

Sunday, November 20, 2005 7:57 AM CST

Not much to report today. We are staying the course and waiting for Tuesday when Maya will have her next CT scan. They are going to do CT scans every other week until the nodules are gone so hopefully they are improving and we can get out of here this week. She is still getting injections for all her antibiotics, but those will change over to a medication through her g-tube when we go home and the CT shows improvment. Yesterday her weight was holding steady and she was looking better as far as her fluid status goes. She has lost some weight since we've been in (about 3lbs) but that is to be expected with as sick as she was.

Yesterday was a quiet day and she mostly wanted to stay in her room and play cards (UNO and Go Fish). She did get up for a couple games of Chutes and Ladders in the atrium,b ut other than that she was pretty quiet. She had a couple visitor in the morning too which was nice. I have my van here now so if we get the chance to make the great escape we can. I also have a coat now for Maya which is good since it was 9 degrees one day this week and I had nothing! It's warmed up though and is more in the 30's and 40's now.

Thanks again for always checking in on us. We love to hear from everyone and enjoy seeing you messages pop up. :)

Holly

Saturday, November 19, 2005 9:15 AM CST

What a lazy Saturday morning. I love it when they don't round until after 9 and we actually can get around and up before they come. Everything looked good today so we are going to "stay the course". Her weight is staying steady and she's feeling pretty good so I think we are on the road to recovery. They are still saying it will be several days or more before we are able to come home, but I'm praying they can find a way to get her home this week instead. She really deserves to have more of a "normal" life for a 6 year old and not be sitting around here all the time. It is especially hard when she is doing as well as she is now.

Yesterday we saw the neurologist and made a few changes in her meds for her neuropathy and she's also been requiring more benedryl for her itchies. It is so dry there that it doesn't help matters any. She digs at her eyes all the time rubbing them. Most of the time she won't even wear her glasses because they itch so bad.

Not too much else here. We spent much of yesterday in the playroom or riding the tractor in the hallways. She's a bit on the ornery side so the less you have to actually try to entertain her the better. If you happen to call here and she answers the phone and tells you I'm not here, most likely that isn't the case. She's taken to answering then talking and hanging up before I can get the phone from here.....sweet isn't it??? (note the sarcasm).

Thanks for checking in on us. We appeciate all the prayers. Please continue to pray we are able to go home this week and she is able to get her new tube put in before discharge.

Holly

Friday, November 18, 2005 8:00 AM CST

Finally Friday! Not sure why it even matters in here, but it is a way of ticking off the weeks as they go by. Maya is doing really well today and I'd say she is back to her regular self. She is having some GI issues now, but it is the same old stuff we've dealt with for months now. She tends to struggle more when she isn't getting a lot of fluids and although she is getting adequate fluids it isn't really enough to help out with the GI stuff. Her belly is distended this morning and we spent 2 hours just trying to get meds down her last night. We did it though and hopefully this morning won't be as much of a struggle for her. Feedings are going well and we are actually going out of a pass today to go over to the clinic and see her neurologist. I know it sounds funny to be excited about a pass to see another doctor, but anything for a break is a good thing. They will take her by ambulance over to the clinic and then bring her back.

Yesterday Maya had a student who took her to the playroom for awile. It worked out nice since this meant mommy got a break for a little bit. We are up to our necks in turkey projects, but enjoying every minute of them. Last night was also a dog visit which Maya tolerated quite well until he licked her...then she was done. She would love dogs if it wasn't for their faces!

Thanks for checking in. We appreciate all the notes in the guestbook.

Holly

Thursday, November 17, 2005 7:51 AM CST

Well we are wrapping up another week here and Maya is doing so much better than she was just a week ago. We still have no IV access and a dysfunctional GJ tube, but overall she's doing well. No fevers for 48 hours now and we have our fingers crossed on blood cultures from yesterday. As of then we didn't have negatives yet. They are doing them everyday so hopefully we will start getting them soon and begin to count our 5 days. Maya is handling the antibiotics by injection pretty well,b ut it is far from fun for her. She also is starting to heal where the clot is in her right arm. It is still swollen and a fairly large area of the arm, but making improvements daily there too. The plan is to hold tight from here unless she spikes or has another positive culture then we will do a white cell scan and galidium scan.

Last night they had a party in the playrom and did a bunch of crafts. Maya had a really good time and it was the first time I could interest her in going down to the playroom since we've been here. I have a feeling there is no stopping her now :) Hopefully we will get out of here soon and Maya can get back to school and back to life outside the hospital. I'd better run, Maya is running out of maps and I need to get her more. Her current obsession is maps and globes so we are frequently printing things off mapquest for her.

Holly

Wednesday, November 16, 2005 7:20 AM CST

Yesterday was a busy day for us. Maya had her injection and then her bone scan in the morning. They decided not to do the TEE since her other echo was ok and therefore don't believe her heart is involved. The Bronchoscopy was also canceled since she is doing so much better. They will redo her CT at some point to see if the nodules are still there or not. The biggest news of the day was we lost all IV access for her. After several people tried including transport team and anesthesia it was determined they aren't going to be able to get one in. Right now we are trying to find a balance between keeping her hydrated and comfortable. She's never been one to tolerate high volumes through her tubes so we have to slow drip everything. Last night she started throwing up too and having belly pain. We were able to make it through the night though. They are currently doing her antibiotics through injection since we are without an IV. I haven't seen docs this am so I'm not sure what todays plan is or if it is just more of the same. I'll try and update if something changes.

Holly

Monday, November 14, 2005 4:59 PM CST

UPDATE: I saw the ID doc and he is thinking they need to do a bronchoscopy tomorrow to find out what the nodules in her lungs are. They also found out her cultures from the past few days continue to be positive so we are going to continue checking them and hope for negative cultures sometime soon.

Not much exciting going on today. She was suppose to have a bone scan, but after waiting all day I was told that would take place tomorrow. She is also having a TEE tomorrow (this is an echo or ultrasound that is done through the esophagus). They are using this to get a clearer picture of the heart and to make sure there is nothing growing on the valves (the actual word they use is vegitation). As far as temps go they are somewhat better today. Not as frequent, not as high. I think her last spike was in the 102's so much better then they have been. Maya's cough continues to be more frequent and irritating too. Her IV's remain in the feet so she is pretty much bed bound and she has a clot in her right arm so that arm is wrapped in an aqua-heating pad all the time. Labs looked pretty good today and overall she seems to be feeling beter. She still isn't herself, but much closer.

I'm not getting any feeling for how long this admission is going to continue. I heard something today about no invasive procedures for the next two weeks so I'm not sure what they are planning for IV access or feeding during that time. I didn't get a chance to talk to the doctor today with my questions so hopefully tomorrow I'll know more. In fact I didn't know about the testing until the nurse told me a bit ago.

We had some visitors today who we met three years ago the first time Maya came here and enjoyed seeing them. Brittany was having some testing today too and Jacob is here for appointments also. I'll update again tomorrow or sooner if something changes between now and then.

HOlly

Sunday, November 13, 2005 10:27 PM CST

Sorry for the late update. Today has been really busy for us and besides that I thought I'd already updated this morning :)

We started our day (can you call it starting a day when you've been up most of the night?) by needing a new IV. She also had labs four times and a couple more IV starts by the time the day was over. That in itself was busy, but add an ultrasound and echo along with doctor visits throughout the day and it was pretty hectic...especially for a Sunday. We had some visitors today too, but unfortunately not much time to visit. It looks like the next few days will be more of the same. She also is needing to nap during the day so as much as we love to have visitors please try to call first or understand if things get a little crazy.

As for a medical update Maya is doing so much better today. She was more alert and even played some. We were able to cut down on her pain meds and are just using motrin and tylenol now. Her temps still spiked up to 39.5 today, but seem to be further apart and slowing down. Her heart rate this evening is finally down to normal and her blood pressure is back up too. This evening she received a unit of blood to correct for anemia and this made a huge difference in her vitals. They look much better now. She also received some fluid boluses during the day for her blood pressure. Her belly is really bothing her, but she is back onto some J feeds and we are hoping to fix the issues with her tube tomorrow or at least discuss it with the surgeon. I'm not sure who else we see or what else is planned other than a bone scan to look for infection in her bones. They know now she is growing enterobacter in her blood, but don't know where the primary source of her infection is. This is typically a gut bacteria and there is no apparent leak or structural problem there so I'm not usre what the next line of thinking will be. The nodules are thought to be some sort of infection, but we aren't sure what type at this time.

I think that is it for now. She is definately improving and now it is just a matter of finding out what is going on with some of the finer points of things. I'm not sure what time frame we are looking at, hopefully in the next few days we'll have a better idea. Some of the doctors change over tomorrow...and that usually means that the plan also changes to some extent. We'll see what happens there. Thanks to everyone for the visits, calls, prayers, and support, please understand if I have to keep things short, right now. Please pray the doctor's continue to work with us to do what is best for Maya.

Holly

Saturday, November 12, 2005 12:03 AM CST

Saturday night update!! Maya continues to have a cough and run temps this evening. We continue to use morphine for her pain and she's been sleeping most of the afternoon. There appears to be some issues with her chest CT so they are going to look into that more tomorrow. I'll update more then.

It turns out Maya is septic. She is growing gram negative baceria in her blood cultures from the past two days. She is receiving some strong antibiotics and D10 for fluid support. Her blood sugars are low, but stable and her heart rate is elevated. She continues to run a fever most of the time and complain of pain so she is getting tylenol and morphine several times a day. There have been some further changes in her labs they are deciding how to deal with and we've gone through yet another IV, but she can still turn on the charm and give you a smile when she's awake. Most of the time she isn't awake though. She tries so hard to stay awake when someone is in the room, but she really needs her sleep so we are trying to let her rest. Her sats and ok, but not where they usually are for her. Her chest x-ray didn't show pneumonia, but did show some fluid in one side so that is most likely why she is coughing. Today she's still going for CT's of the head, chest, abdomen, and pelvis looking for a source for the bacteria. Not too much else going on. We appreciate all the prayers, visits, and calls we've gotten, but please understand if we have to keep it short right now. It is sounding like we'll be here for awhile yet.

Thanks for checking in.

Holly

Friday, November 11, 2005 6:32 PM CST

Good evening, we are finally getting settled in and seeing the doctors. Maya saw infectious disease along with the medical doctors this afternoon and they really aren't sure what it going on. With the history of blood infections she has they are are going to plan on scanning her tomorrow to rule out any pockets of infection and if that doesn't show anything they will do a bone scan to make sure the bones are not hiding any infection. Her heart rate remains elevated and she continues to run fevers. She is running a low blood pressure also. Maya spent most of the day sleeping except when she wakes up to boss someone around. My favorites of the day are..."Oh, I have a cough and don't feel so good..can you get me some diet coke and a sucker?" She also told the girls from the lab, "don't count one..two..three, I am six so you need to count to six" This really tripped the lab person up since she is use to sticking on three! As funny as she is, unfortunately that was about all she said today. Otherwise she just slept and cried most of the time. Her labs don't look very good either, but I've been told by three doctor's that you wouldn't know the labs belong to this child since she looks so much better then they indicate. I suppose this is a good thing since I'd hate to see her feel any worse. She just got morphine and some tylenol so she is feeling somewhat better now and actually sitting up all by herself.

I'll be updating daily at least for awhile and maybe more then once a day depending how things go. She is getting ready to go for an x-ray and dye study tonight to check her GJ tube and her lungs as she's developed a cough today. Thanks for all the prayers and thoughts today. They are limiting they length of visits right now so she's been in her room resting since we got here. I'll post the room info at the bottom.

Holly

Friday, November 11, 2005 9:19 AM CST

IMPORTANT UPDATE!

Maya is being transferred to St Mary's in Rochester this morning. She has continued to have fevers throughout the night..105*, even with tylenol and motrine. They are concerned that she may have yeast growing somewhere. The med they want to give her requires a central line, it can't be put into her IV. Please keep them at the forefront of your mind. Let's envelope them in your thoughts and prayers today.

Karla

Wednesday, November 9, 2005 9:18 PM CST

Good evening! Thank you so much for the wonderful guestbook entries! I read them to Holly tonight and she really enjoyed them.

Maya continues to run fevers...up to 105*. The doctors believe they are drug induced fevers from one of her antibiotics. She was taken off that drug yesterday. They are watching to see what happens until Friday and then at that point, if the fevers are continuing, they will do more studies to find the source. Her white count is coming up a little, but because of the risk of getting a cold or worse from others, they are limiting visitors. Maya has a headache today and spent the majority of the day sleeping. She didn't even want to do crafts today, but instead told Holly what color and where she wanted that color on a project she was doing. Then informed Holly, "You are exhausting me!" LOL!!! That kid is so darn funny! I sure love her :)

Keep the prayers coming for resolution to the current issues and for strength for both Holly and Maya.

Karla

Monday, November 7, 2005 10:40 PM CST

No such luck on the trip to Rochester today....Maya had a fever over the weekend and again today. They ran a bunch of cultures from her nose and throat as well as blood to see what the heck is going on. One from her nasal swab, in an area between her nose and throat I believe Holly said, came back positive. She will hopefully know more about that tomorrow. If things get under control here by tomorrow, there is hope of having the central line placed on Thursday. Maya's protein levels are falling and so it is important to get her back on TPN since her feeds aren't where they'd like them to be. I went up there yesterday to bring mail and Maya looked tired and not like herself. However, she wanted to stay awake as long as she possibly could! LOL She is such a nut.

Please send some prayers Holly's direction...it's been a long, long year. Both her and Maya could use a break. Pray that the port is placed on Thurs and these fevers stop.

Karla

Friday, November 4, 2005 9:41 AM CST

Good Morning everyone! Maya came out of surgery fine, however they were unable to get a PICC line placed since her veins are all spidery and they were unable to thread it through them. She has peripheral IVs instead, but has already gone through one (maybe more since I haven't talked to Holly since yesterday.) It just makes it more obvious how necessary her central line really is. Her feeds had to be backed down because of bloating. One step forward and two back it seems. On Monday, she will be going to Mayo for 2 appts. One to the surgeon and one to Infectious Disease. Tuesday, she will have a new port placed.

I brought Pookie over on Tuesday for a visit. She LOVED it. Check out the pictures in the photo album. Here's another one of Maya's sweet smiley face!



Thanks so much for all the support for Holly and Maya in the guestbook. I know she really appreciates it! If you live in the area, stop by for a visit. I know she'd enjoy that!

Karla

Wednesday, November 2, 2005 11:41 AM CST

UPDATE: It is now 4pm and they just called to say Maya is in recovery. She's doing well and I'm sure ready to get back to her room soon. They were able to take out her port and put in the new GJ. From what I've been told they were just able to do a peripheral line for her.

Hi, I just wanted to quickly post for myself an update. Maya is currently in surgery so there is a computer in the waiting room over here. Maya's line grew out another bug after 4 negative cultures on Monday so her line has to go. They are going to pull her port, get some access in so we can continue antibiotics, fix her GJ tube and then in a week or so put in a new port. Her GJ came out of place last night so it was actually good timing since she was scheduled to go in this afternoon anyhow. She's so brave and faces each challenge with such positiveness. I'm praying this goes quickly and she'll be back in her room early this afternoon. I think we'll be heading toMayo sometime next week to have the new line put in. We had some backward motion on her feedings so we are only where we were when we came in, no real forward motion in getting her to full feeds yet. Each time she gets sick it slows that process down for us. She's on multiple antibiotics right now and we are praying this line will stay clean for a long, long time. Thanks to everyone for all your support as we've gone through this and past hospital stays. We can feel all the prayers each day as we move forward in fighting these bugs.

Maya did love her chance to go out and be a butterfly and I'm so grateful that was able to happen. Everything she can do to allow her to be a kid is good for both of us. It always makes me remember something she told me last year after she was "child of the day" in kindergarden. She came home from school and said, "Mama, that was fun! Someday...I want to be a child again." Little did I know in less than a week we'd be starting these marathon infections and how true her statement was. As always though, she's happy, smiley, and just as I've always loved her..........MAYA!

Holly

Tuesday, November 1, 2005 11:49 AM CST

Thank you Carrie for posting in the guestbook! I was just going to look and see if it was on the website. Click here WKBT to see Holly and Maya on the news! It was an awesome news story!

Things continue to be about the same. Maya has had different bacteria showing up in her cultures for over a week now. This week they did what they call TPA'ing her line, which basically means they clamp the line with medicine I believe in it, hoping that by sitting there it will help clean out the line from any junk that might be hanging around. It didn't seem to work, as too many new bacteria are popping up every few days. She will be going into surgery today to have her line pulled. I will also be bringing up her beloved Pookie for a visit. The doctor wrote an order for her Pookie to come...how sweet is that??? I will post pictures later today!


Please keep both Holly and Maya in your prayers today!

Karla

Saturday, October 29, 2005 9:41 PM CDT

UPDATE!!!!!! Holly and Maya are going to be on News Channel 8 WKBT tonight at 10 and will probably be on the morning recap tomorrow as well!!! If you get a chance please watch it!!! They wanted a different Halloween twist kind of story and so they are interviewing the butterfly herself!!!! YEAH!!!!


Not a whole lot of news to report. Maya continues to get antibiotics. The weekend is pretty quiet for them. Just keep plugging away. Today they discussed how the feeds are going in case Maya does lose this port and will need to be off TPN for a week before they can put a new one in.

Maya is getting excited for Halloween! She is going to be a beautiful butterfly!

Karla

Wednesday, October 26, 2005 9:12 PM CDT

Maya is doing pretty well overall. She is still on antibiotics. They found one that should work really well since the other one they wanted was in shortage. Maya's teacher has been coming to the hospital which is keeping her busy.

Today, Holly met with some of the hospital staff and some of her support team and discussed the plans for Maya all together. There were some plans made on how to make Maya's life while in the hospital as normal as possible, as well as plans for health issues. Holly came away from it feeling really good. I will let her explain more when she gets home. No word on when that will be yet, but Maya will have a pass to go trick or treating! YEAH!

Keep the thoughts and prayers coming!

Karla

Saturday, October 22, 2005 5:16 PM CDT

Sorry for slacking! Maya got a negative culture on her gram positive infection, only to turn around the next day with a positive culture for a gram negative infection!!! They need to add another antibiotic for the gram negative infection, but it isn't available because of a shortage. Not sure if they had any luck yet today on that.

I saw the girls yesterday. Maya was a little puffy in her face and very tired. Her teacher was there when I got there. It wasn't long before Maya was done because she was too tired. She perked up a little later in my visit. Overall, I think she is doing pretty well. Just trying to beat this new infection.

Karla

Wednesday, October 19, 2005 6:38 PM CDT

Update on the girls!

Maya is doing okay, something seems a little off about her behavior, but overall is okay. Yesterday she had a seizure. It took a little while to recover from it. She was in her glory though because she got a globe yesterday. I guess it even made the trip to the EEG room with her! She also wants to sleep with it, which is a little interesting to say the least...imagine a globe in the bed!!! She is so silly! Cultures are still positive. Need to wait until they get a negative one before it counts as Day 1. 14 days from that point before they can go home.

Keep praying!

Karla

Monday, October 17, 2005 10:08 PM CDT

The trip is off for Thursday.....no princesses yet. Maya was devastated when she heard she wasn't going to Dizzy World on Thursday. The bacteria is different than they originally thought it might be. It is enterococcus, a gram positive infection. The antibiotics needed to be changed to cover this bacteria. Maya had a rough night being awake most of the night. She was also retching this morning with her meds and not her normal funny self. Hopefully she starts feeling better soon. Keep the prayers coming!

Karla

Friday, October 14, 2005 6:21 PM CDT

UPDATE! Maya's cultures are growing gram positive bacteria. They are back in their regular suite, Rm 524. She is in good spirits and not feeling sick, so that is great. Keep the prayers coming!


We've had an exciting two days and have a full week ahead of us. I'm overwhelmed just thinking about it. Yesterday Maya had speech in the morning then we took a walk in the afternoon because it was so nice out. She likes to ride in her w/c and look at all the leaves that are changing. She is mostly facinated with weeping willow trees though. She keeps asking, "are those the kind of trees they had when you were a little girl?" Like I'm so ancient trees weren't even around yet?! Yesterday I also put up her swing. We had ordered a "rainy day playground quite awhile ago and I was stalling on putting it up. It is basically a bar that attaches to the door frame and you attach either a swing or trapeze to it. There are other things too, but we just got the basic set. She loved it and sat in her swing for over an hour last night. The bad part was after the swing she was so tried (6pm) and wanted to go to bed, she felt warm so I checked her temp and it was 101.7. With a line that isn't the best news and usually means cultures, antibiotics, etc. Well, this morning guess where we headed???? Yep, in for cultures. Now I get to hold my breath for the next 48-72 hours and wait to see if they grow. She seems fine other than the temp. I hate that part about her being chronically ill. Any other kid you'd just think it was viral and give it a few days, expecially if they acted fine. With her I'm always 15 steps ahead and ready to leave for the hospital at a moments notice. Oh, well I guess thats life.

We just took a walk today and Maya recited some things she's learned to me as I pushed her around the neighborhood. She knows Peter, Peter, Pumpkin eater, but has to follow it up with, "you wouldn't put ME in a pumpkin shell would you?". She's also learning There Was an Old Lady Who Swallowed a Fly. She pretty much makes up the words after spider, but is getting there.

Wednesday's labs were pretty good, just a few changes in her TPN. We'll go back next week again. Monday we go see GI at Mayo and have an EEG (oh, I am SO looking forward to staying up all night with her) and then Tuesday she sees Neurology and has some labs/urines for nephrology and follows up with them in the afternoon. I've held back the other news in order not to jinx myself, but on Thursday we are going to Disney for a long weekend! This was planned back in February and has been canceled and rescheduled several times. I'm trying not to get too excited for her since we've gotten this close before, but it would really be nice for her to get the chance to go and I would love to see her face when she meets her beloved princesses. She's has such a rough year with everything I want her to get to go and forget all of it for a few days. (of course this may be hard to forget as we go dragging all these pumps and drains through the park, but we can try)

Anyhow, thanks for checking in. Please keep our friend Carolyn in your prayers. You may have seen she often signs the guestbook and is so inspiring to us. I've heard from another site she is having some medical issues and could use prayers.

Thanks,
Holly

Tuesday, October 11, 2005 7:42 PM CDT

It was a whirlwind two days and I feel like I got nothing accomplished. Yesterday we were up early and went to Mayo for Maya's appointment with urology. She also had a urodynamics study done since they only did the VCUG and renal u/s during her last hospital stay. Basically all is the same. She has nerve damage from one of her strokes and has some issues related to that, but nothing we can't handle medically. We are going to try not to add any new meds right now since her tummy is walking the tightrope and we can't risk any backward steps right now. Today we saw audiology in the morning and that too was unchanged. She has no hearing in one ear and good hearing in the other. They want her to start wearing her earing aid again for a few months to see if she localizes sound better, but they aren't sure if it will help since there is nothing there to begin with, but thought it was worth a try since sometimes when sound gets loud enough you get some crossover to the other side. They also emphasized how important for her to have an FM system when she goes back to school. Her vision issues and hearing issues alone would just be a minor adjustment but when you add them to the big picture there is more impacted. She loves having her hearing tested though so that was a fun morning playing games with them. This afternoon we saw nephrology. She currently has no stones which was a big yea! She'll have some labs again Tuesday and then follow up with the doctor again after that in regards to her kidney function. Overall it was good news though.

Ever since our trip to the park (new pics added by the way!!!) Maya hasn't quite recovered. She's been asleep the past two nights by 6:30 and I've had to wake her up in the mornings. She seems fine otherwise, just very tired and laying around. Even though it always places a little worry in your mind when she sleeps so much, I have to admit I'm enjoying the sleep too. As far as her belly goes no real changes. Still on TPN and some feeds. Hoping to advance tomorrow maybe. We go see the pediatrician in the morning after she goes into school for speech. Labs, reaccess, etc. I'll update tomorrow evening if anything big changes in that aspect.

Today Maya got a CD in the mail from Nana. She was so thrilled since she's wanted it ever since she first heard the song, Mississippi Girl by Faith Hill. I'm not sure what it is, but she told me today that the Mississippi is her "best river" so maybe that's why. Anyhow she had to go to bed with it on auto-replay. I think what is so odd to me about it is that she doesn't really listen to much other than preschool stuff then she gets something in her mind and she loves it. We also started learning the states today. Maya has a great memory when it comes to stuff like that. Sometimes she can't find words, remember where her room is, etc, but other things she just nails...like memorizing concrete facts. Anyhow, she mastered 10 states today (yes, Mississippi was one of them!). She can't transfer to any other map then the one we used, but that will come with time. We are learning states where people she knows lives (including Dizzy World).

I guess that is it for tonight. Thanks for checking in on us.

Holly

Sunday, October 9, 2005 5:35 PM CDT

Update! Well, she only made it until about 5-5:30 last night and was out all night. She was so peppy and silly this morning. I love it when she's full of Maya. There is really no other way to describe her than just that, Maya! She's a very unique little girl and why not with the interesting life she leads. I'm also trying to get new pics up from yesterday.

Weekends are so nice....too bad they have to end. Tomorrow bright and early we are off to Mayo for a couple appointments and also on Tuesday. She starts back with her teacher tomorrow afternoon then speech on Wednesday. If you add in our local appointments we have a busy week ahead.

Saturday Maya and I relaxed in the morning since she was having some belly issues then went to the movies in the afternoon. Last evening she was draining so much though her g-tube I ended up having to get up to empty the bag during the night. This morning she seemed to be feeling pretty good so we went to church and she went off to Grace Place. We came home and I started working on switching out her summer clothes for fall and winter stuff then this afternoon in her break from her tubies we went to the park and played with Devin. I love fall since we don't have weather issues to deal with. We went to the big hill and rolled down (when I say "we", I mean "she") which is on her current list of favorite things to do. Now she is so pooped she is just sitting in the living room staring at the TV (too bad it isn't on!). She's asking to go to bed, but I'm trying to hold her off until 7.

I was hoping to hear something more on her biopsies this week and what her GI thinks they mean when it comes to our treatment plan for her. I get tired of always wondering what exactly we are doing or what the plan really is. I know the issue is that there is no good answer for that question, but it is still frustrating to wonder.

Thanks for checking in.

Holly

Friday, October 7, 2005 5:48 PM CDT

I finally am back on line!!! They actually came out three days early to get it hooked up. It is so weird being away from caringbridge families for even just a few weeks. You become so involved in many of these families lives and want to know what is going on with the children.

Our week went quickly. After we went to Mayo on Wednesday morning we came back to see the pediatrician. She felt we could cut back on Maya's TPN calories, but continue the volume she is receiving so we don't run into problems with dehydration. She has recently been dumping out about everything we put in through her J tube and it comes out through the G. This may not seem odd, but the J tube where stuff goes in is BELOW the G where it is coming out so it is basically moving upwards and against gravity and the normal motility of the intestinal tract. I also tried to take her off all her antihistamines to see if we could do some allergy testing and she broke out so bad they had to be restarted. She now has 5 open areas on her chest we are having to treat Today we received her biopsy results from Cincy and it looks like there is more there then they first throught. She has gastritis and esophagitis and some other issues of concern, but we are waiting to hear from GI as far as the details of what to do about them. I'll give more detail as I hear.

On the fun side of things...Maya has gotten to go to school for speech several days this week and her teacher came out three times this week too. She just loves to do her school work and is making nice progress. Today we went back to school for the afternoon to see the homecoming parade. Maya got to sit with her first grade class and saw her friends both in the parade and on the sidelines. Miss Karla and Jakey were in the parade and so was Michael, Jacob's brother who is in the band. Maya enjoyed herself and being outside since the weather finally is "Maya friendly". She got a little football from one of the parade people and had had me outside for the last 20 minutes playing football. It is so funny to watch her drop kick the ball. Needless to say she moves further than the ball!

This weekend should be cool enough to be outside more so we are hoping for some great adventures. I also have fall pics from this afternoon I'll try to post later. Thanks for checking on us.

Holly

Wednesday, October 5, 2005 10:48 AM CDT

Well, we are up at Mayo so I thought I'd take the chance to jump on a computer for a minute. I should have my access back next Monday, but now we have to come up here so I'm not sure how that will work out. We are suppose to be back here on Monday and Tuesday of next week and then Monday, Tuesday, and Wednesday of the following week. Not sure how all that will pan out, but that is the plan right now. Today we came up for labs and for an eye appointment and then will be back this afternoon in LaCrosse to see the pediatrician. Of course it is windy and rainy so that will make for a fun drive.

Overall Maya has been doing well. We are working on getting her J feeds up where they need to be to come off TPN, but it isn't going a well as we'd have liked. Yesterday she got so bloated she needed her G and J hooked up to vent. Usually just her G vents. She is putting out formula through her G even thought it goes in through her J which is lower in the intestines so that doesn't make a lot of sense. She has been able to return to Speech therapy and also has had her teacher coming out for school. She loves school so much. The past few days have been really hot so we had to skip the Octoberfest rides yesterday, but she didn't seem too disappointment. There is suppose to be a cool down tonight so I'm hoping that we can go to the torchlight parade Thursday night. Yesterday she did go to the dentist and all looked well. She did really well tolerating things too so I was proud of her since she struggles with different things in her mouth sometimes.

The next few weeks are pretty busy with getting things caught up from the past couple months of being inpatient. I still haven't unpacked from the hospital, but Nana was here for the weekend so that took top priority. Maya was thrilled to see her and we had a nice visit. HOpefully I'll get back online before Monday to update. Thanks for all the guestbook entries, it's been really nice to hear from everyone.

Holly

Monday, October 3, 2005 10:01 PM CDT

Hello everyone! Updating for Holly until she can get her new internet access at home. They came home late Friday night. Nana came Friday night too, plus Pookie was waiting at home for them when they came, so it was a nice welcome home. They spent the weekend going to the movie, shopping, and having a fun time visiting. When they went to pick out a pumpkin, Maya thought a gourd was much more fun because she was could carry it herself. Silly girl!

Maya seems to be okay...last night she was really bloated and just feeling yucky from that. The teacher came over today, which Maya enjoyed. Tomorrow, she is going to the Oktoberfest to ride on some rides with her class and Mama too of course (Jakey and I are joining them too!) and afterwards she is going to the dentist. Holly has been busy trying to reschedule appts they had to cancel while inpatient and getting things done as much as she can while they are home.

Thanks everyone for your good thoughts and prayers. I read the guestbook entries to Holly, so I know she really appreciates hearing from all of you!

Karla

Saturday, October 1, 2005 3:10 PM CDT

The girls are home! Now we'll just have to wait for Holly's update!

Karla

Wednesday, September 28, 2005 7:04 PM CDT

Plans are still to come home on Friday! Nana is coming too for the weekend, so Maya will be extra happy! Maya received an iron infusion yesterday. She seems to be doing okay, but now it's Holly's turn to be sick. Her side is hurting and feels overall really sick. She is considering going into the walk in clinic tonight. Hopefully she will start feeling better soon!

Karla

Monday, September 26, 2005 10:02 PM CDT

Hi! It's me Karla updating for Holly. They are back in La Crosse which means she doesn't have internet access. Things are okay...Maya's feeds are up to 35 ml per hour. There is plans for giving the TPN only 3 days a week and deaccessing her in between. Her C-tube was also taken out before discharge at Mayo. So far there hasn't been any issues with that. The plan is to come home on Friday after completing the antibiotics.

Maya is in good spirits. She had some pain last night in her tummy, but seemed to be a little better today. She had a teacher come today to work with her which I know she enjoys. I will update more as I know more!

Karla

Friday, September 23, 2005 7:34 AM CDT

Today we are being transfered back to LaCrosse to finish up antibiotics. She'll need to be on them until October 1st and then we'll be finished with this round. All is well as far as her infection right now and her feeds are going slow, but she's tolerating them right now. Last night she had quite a bit of discomfort and coughing,b ut seems to be tolerating things better this morning. I think it was more of her usual ups and downs then anything.

Yesterday we had some company from LaCrosse and Maya really enjoyed visiting and playing with them. Not much else going on around here. Looking forward to returning to LaCrosse later this morning and getting Maya back in her routine then heading home this time next week!

Holly

Wednesday, September 21, 2005 8:00 PM CDT

Today was a good day. Maya had fun at the party this evening in the playroom making lots of crafts and just having fun. She also spent lots of time crafting in her room this morning before her barrium enema. I haven't heard the results from this test, but I'm guessing they were fine since I didn't hear anything. Today was also reaccess day and the day she gets her shower and hairwash. Sounds simple, I know, but it is a minor ordeal she hates (the hairwashing, not the reaccess). Other than that all is well.

Holly

Tuesday, September 20, 2005 8:53 PM CDT

Another day down and hoping for discharge by the end of the week. Cultures remain negative, no temps and another 10 days of antibiotics to go. Feeds back up where they need to be and plans to d/c TPN. Testing today for her kidneys and bladder where unchanged from last time.

Thanks for checking in on us.

Holly

Monday, September 19, 2005 9:45 PM CDT

Not much news today. Maya had her echo this morning and all was well with that. No changes since her last one. She also had some labs to see if there are still bacteria growing in either her line or peripherally in her bloodstream. Last I hear we finally got negative cultures yesterday. They said 14 days of antibiotics from her first negative so that would been two weeks from tomorrow we'll be done with this. I'm planning on being home before that though if all works out as planned. My understanding of the plan is for GI to talk with the doc we saw in Cincy and then just clear the infection and go back to working on feeds. They haven't tried this yet, but I'm sure we'll make progress since overall she's feeling pretty well. She does have some "owies" at her cecostomy site so we are discussing what to do with that too. Tomorrow was to be her urology work up and I haven't heard from them what they plan to do about sending us over to the clinic for that. It might be nice to know about now since her appointment is at 8am, but I'll let them deal with that. I really don't have much else to report. Things are status quo and doesn't look like many changes will be made except to finish antibiotics. Maybe by the end of the week they'll let us come home and finish them there.

Holly

Sunday, September 18, 2005 12:13 AM CDT

UPDATE!!!!!!!!!!!!
Maya is now is room 3-108. New phone number too. I updated the contact info at the bottom of the page.

Last night as we lay here in the dark waiting for sleep to come, (Maya in her nice comfy bed surrounded by her Ariel pillow, fluffy purple pillow, purple-the cat, and under her comfy Dora blankey....me, on my nice very firm, vinyl covered foam "bed" with a sheet and bath blanket, Pillow covered in so much plastic the pillow case won't even stay on) Maya leaned over the rail and asked, "Mama, what are you imagining right now?" If she only knew what I imagined....her with her purple wings "flying" though the park, her sitting in her class at school with all the other smiling first graders, the excitement in her eyes when we explore some exciting new adventure, her growing up into a beautiful young lady free of illness and without a care in the world........ Instead I answered, "Lovey, I'm imagining you asleep and me following close behind" She was so tired after our big day and just couldn't get her body to rest. Yesterday afternoon she had her GJ replaced with anesthesia, then off to the recovery room. Then about 7:30 last night they gave her contrast and sent her off to CT about 8pm. We were back in the room by nine, but she was so tired that she was yelling all her words then asking, "can you hear me?can you hear me?". Those of you close to anyone with ADHD would know what I mean. Today is better. We have a working tube so she's up to date on all meds. Cultures are all still growing which is not necessarily what we want, but she acts fine so they are hoping to still clear the line. We are at 9 days and counting with positive cultures. They cultured her cecostomy and the tip of her J-tube yesterday too. The current theory is she is leaking somewhere and we need address that area. Today is a slow day although she is having an echo of her heart and some labs....we are hoping to move to the 3rd floor too where she usually is so she can be by the playroom, other younger kids, etc.

In other news today. I have entirely too much time on my hands so if you see frequent updates or get sent lots of e-mail you'll know why :) This morning when the doctor's came in on rounds I was given a new title. They always refer to Maya as purple princess Maya, but today I became the Queen Mother--unsure how I feel about that title :)
We met another family that we've met several times before when we've been here and also in LaCrosse so that was nice to visit for a bit. Yesterday we had some visitors in the afternoon from the church. It was nice to talk and since Maya was in recovery at the time it was a good way to pass the time without thinking. I am regaining my skills as a hair braider since the nurses at Skemp were so good about keeping Maya's hair french braided and now when I went back to regular braids they just didn't do her justice so I figured it out and started French braiding. A girl just needs to have her hair and nails at a time like this. (the nails are currently purple by the way).

No date is being projected for discharge yet. I was told it could be possible by the end of the week, but we need negative cultures before we can even begin to think about it. We are only having low grade temps now so that is a good sign. This would be on all antibiotics etc and since she is on three different ones along with her other IV meds I suppose we'll have to wait and see how that would work. Sure would be nice to be back home and have Pookie back. I know he loves Karla's, but we miss him dearly. Everyday Maya asks about him and when she can see him again. She also followed up that comment yesterday with, "I am so glad Pookie is not a dog."

Thanks for checking in, drop a note in the guestbook if you get the chance........we'd love to hear from you.

Holly

Saturday, September 17, 2005 12:51 AM CDT

I can't beleive we are half way through September already. The year has just gone so fast yet other times it seems endless. Maya is doing really well today. She is perky and happy and enjoyed her morning helping to make the bed and clean her room with housekeeping. We haven't been able to get meds in her due to her j-tube being totally blocked so that is a bit of a problem, but otherwise she is doing ok. The new plan (always changing isn't it?) is to take her down to radiology today and have her GJ tube replaced then they will do a dye study and CT scan tomorrow or Monday. Last night when her J tube stopped working we tried to give just seizure meds orally. Big mistake since not only did she wretch and throw up for the next hour, but she is just now draining them out through her G-tube so they essentially sat in her stomach until they found a way out. It seems anything she takes orally just stays in the stomach so unless it is a liquid and drain back out we have problems. They are still trying to sort all this out and decide the best plan for dealing with it and fixing the infection issue in the meantime. They are doing daily cultures right now trying to get a clean one and also restarting her TPN at some time this weekend.

Today we took a walk after some heavy duty beading sessions this morning. Maya spent forever hovered over the balloon book picking out her choice. She was stuck between three so we drew straws and how she has a purple star floating in her room. I'm sure the rainbow and butterfly will follow if we are here very long since when we take a walk we go right past the gift shop. Right now she's poised, scissors in hand waiting to make some great creation.

Holly

Friday, September 16, 2005 5:13 PM CDT

Hi everyone! I am back to doing my own journaling which means one of two things...We are home....or we are in Rochester. I suppose you've figured out we aren't lucky enough to be home so soon so we are in Rochester. Maya's cultures from the 12th had grown out at 53 hours so we figured we were doing good with this infection and moving forward. Well, we drew cultures on Thursday and it grew out rather quickly so here we are waiting to talk to the surgeons and have her port removed. They are going to remove the port, treat the infection and then put in another line. In the mean time they are going to try to figure out what is going on that causes her to get so many infections and where in her gut they may be coming from. There are a few theories floating around and I was up most of the night formulating a few of my own. It is time that something has to be done as this bacteria was the same as a month ago and yet resistant to so many more antibiotics this time. Infectious disease and the surgeon were contacted this morning and they decided we needed to come up here sooner than later so we also missed our GI appointment at the clinic which was a bummer also. Hopefully all that will get figured out while we are here.

Yesterday Maya started to run temps again, but they are staying low grade (101's) so they aren't real concerned over the speed of removing this port. I suppose that is a good thing in many ways. Maya is doing great through all of this. Her only question when we got out to the ambulance was, "where is the airplane?". She got spoiled wiht that door to door service we had to Cincy last month and didn't want to lower her little princess self to riding in the back of an overgrown truck!

I have a Mayaism for you. Last week she had several visitor and many brought cards, presents, etc. Well, she walked into the bathroom on Wednesday and saw a stack of wrapped toilet paper rolls on the back of the stool and said, "Mama, look at all the little circle presents on the back of the potty!" She must think the potty fairy is coming to bring presents now. I did let her open one at her insistance and she was actually very excited to find a roll of toilet paper, of course she followed this by saying, "I wonder what are in the other ones?" What a stitch she can be sometimes.

I will most likely go to updating daily since I have a computer now. Thanks for continuing to check in. My diligent friends have been reading the guestbook to me and picking up mail for us. Thanks to everyone.

Holly

Tuesday, September 13, 2005 7:47 PM CDT

I swear...Holly and Maya know how to have FUN at the hospital! Once when Maya was in Chicago, an angry parent came in with a gun and they had a lockdown. Today, there were severe thunderstorm, flash flood, and tornado warnings, so they got to spend time out in the hallway! I told her she has all the excitement! LOL!!!

Maya is doing okay. Still about the same. Today she decided to write a book with Holly's help. Surprisingly it was all about butterflies, and rainbows, silly putty and friends...all the things she loves. Holly read it to me over the phone and I was hysterical. It sounded JUST like how Maya talks. TOO cute. Mayaism for the day:
"Do butterflies have ears?"

Friday, the girls will be going to Mayo for a couple of appts and coming back to the hospital. Wish them luck!

Keep the prayers coming!

Karla

Monday, September 12, 2005 8:23 PM CDT

Sorry for the delay. Maya is doing okay. She is awake more now than she was, asking to watch Dora, and making more coherent sense! Her cultures have come back as growing gram negative bacteria, e coli, and also another bacteria she had the last infection. However, this one has become resistant to the antibiotics they usually use, so another one was needed. It looks like there is a great chance they will need to change her port. For now, the plan is to continue treating the infection and handle things as they happen. There is a plan to meet with the GI dr and the surgeon at Mayo this week. I will fill you in as more info is gathered. Keep praying and sending good thoughts their way!

Karla

Saturday, September 10, 2005 10:37 AM CDT

Good morning! After only 6 hours, Maya's cultures were already growing gram negative bacteria. They are identifying which kind of bacteria it is so they make sure they have the right antibiotics. If it is the same bacteria as last time, there is a chance they will lose her port and have to put a new one in. The fevers continue. With Motrin, they are able to get them down to 102. Hopefully today will be the turn around point with the fevers. She has been awake, but goes through periods where she makes no sense when she is talking. She was all worried this morning that she left her flowers at home and needed them at the hospital. She didn't have any flowers at home. So the nurse went down the hall to the nurse's desk and got her some. It calmed her down. She's so goofy sometimes! Otherwise, things are somewhat stable at this point. They did move back to their regular room too, room 524.I will update as I hear more.

Karla

Friday, September 9, 2005 10:34 AM CDT

Hello everyone! Just letting you all know that Maya's fever continued to increase over night. Around 5:30 Holly left for the hospital with Maya, temp at 103, and by the time they got there, it was 106.6. She was very nonresponsive, but is now wake and watching Dora. She has many antibiotics running until they can figure out what is up. Cultures have been drawn and just waiting to see where this is leading. I will keep you all informed. Info is on the bottom of the page.

Karla

Thursday, September 8, 2005 11:37 AM CDT

I heard from the doctor this morning and Maya's labs were pretty much what we expected. All pretty good with just one minor change to her TPN with some sodium since her sodium was lower than she'd have liked. She is trying to set up an appointment with Mayo for Maya to see GI soon. I still need to call Cincy and get the records sent up there so they have those too. I'm a real "loser" and lost the copies I had. Oh well, what's new, LOL!

Maya had speech and PT this morning which she loved. She got to ride the bike since it had a place to put her pumps and then had speech which I think is the highlight of her day. Although this morning that would be a close tie with Miss Karla coming for a visit. She was pretty peppy this morning too, but now that things have settled and no one is here she's zoning and watching Chicka, Chicka, Boom, Boom.

Nothing else planned today except Pookie is having his turn at the doctor. Maya is very concerned about Pookie needing a "needle". I'm sure Pookie would be concerned too if he only knew! Actually he likes the vet because they grow their own catnip and he loves to eat it! He's such a food processor.

Hope all is well with everyone. Thanks for checking in.

Holly

Thursday, September 8, 2005 7:57 AM CDT

Our week has been pretty uneventful. Maya had her nurse come on Tuesday so I could go to the dentist and get some things done. She had a good time and it was nice to have a break from meds, bath, hair, etc for a morning. Although going to the dentist wasn't really my idea of a good time. Yesterday was Maya's clinic visit with the pediatrician. I never heard about her labs so I'm guessing they were ok at least. She has been loosing a lot of drainage/formula through her g-tube since this weekend so I'm not sure what that is all about. She's got some belly pain too so we are trying to run her go-lytely through her cecostomy off a pump for a couple days to see if cleaning her out a bit doesn't help. It doesn't look like Mayo will be doing anything to help out with the J-tube etc at least not right now. We need to go see the surgeon and the GI doc at the same time to see what they are thinking.

Yesterday Maya had speech therapy at school and today is PT and speech. She really enjoys going and has been asking all morning if it is time to go yet. Still no teacher though for her homebound instruction. It is so frustrating since this was known last spring they needed to have something set up. It is like since she is sick and not there it doesn't matter if she gets an education or not. I was told that she "isn't the only child here". It isn't like I expect them to take away from other kids to give her some time, but you'd think.....oh well, what's the point in going on and on. The fact is I'm doing what I think she needs at home right now as far as school, reading, etc and she's doing well. I suppose it isn't such a big deal anyhow...just frustrating since we've finally had a good couple of weeks she could have really benefited from something.

I'll update again soon if I can get online. I don't have very reliable access right now and for those of you using my charter account it is no longer good so you can switch back to the address listed here on her page at the bottom. Hoping to work something out soon.

Holly

Monday, September 5, 2005 2:02 PM CDT

"New" pictures posted!

Not much new to report here. This has been a pretty quiet weekend for us. Yesterday we went to church and then came home and rested most of the day. In the evening we took a walk and played for a few minutes at the park, but nothing too exciting. Maya was asleep by 6pm last night and quietly playing this morning. She was really uncomfortable after church yesterday and it took a lot out of her so I think we are still on the recovery phase. I made the mistake of leaving her in children's church with no instructions and she isn't able to tell people what she can and can't do so we had a setback after that. Anyhow, don't think she'll be going back anytime soon. She'd rather be in church anyhow and really enjoys the music, etc.

Speaking of church, yesterday our pastor preached on biomedical ethics. In talking about genetic engineering and making the "perfect" child it makes me think of how boring our world would be. Not that you wish illness and disability on anyone, but after the fact I can't imagine those special kids I know any different then who they are. Many times it is their struggles and what they fight for and endure that is what makes them who they are. Two of the happiest kids I know are Maya and Jacob. No, neither Karla or I would have choosen for our kids to have disabilities or illnesses, but neither of us would trade them for anything. I learn so much from all the people I've met on our journey, but never more then from the kids themselves. Don't take this to mean I wouldn't want my daughter healed in an instant, but she is who she is and sometimes Gods purpose in making someone different if far beyond what we could ever dream or imagine. Their mission on earth may be different then what we initally intended it to be. At the same time as a parent of one of these special kids you continue to work toward a normal for your family. It isn't the same as the normal for others yet you try to achieve many of the same goals other families have. You are limited many times by medical necessities, appointments, and different abilities, but you still want to take your kids to see places, see them go to school, learn new skills and just enjoy being a child. Even so, you know in your heart this will all happen in Gods timing and not on some schedule set up by man.

Our week is pretty busy with speech and physical therapy, doctor's appointment Wednesday, I have a couple of appointments, and we are still trying to get some proceedures scheduled at Mayo. I'm hoping Maya can take this week to get back on track and feeling a little better too. She's been having some episodes in them mornings and sleeping a lot ( I know I complain when she doesn't sleep and worry when she does...I'll never win :) ) I think overall things are ok, just recovering from our big trip to Cincy and adjusting to life at home. Feels like we've been home forever, but it's just been a week today! Funny how that works.

I hope all is well and if you have a second please take time to sign the guestbook especially if you haven't in awhile. We'd love to hear from you.

Holly

Saturday, September 3, 2005 4:47 PM CDT

Good afternoon everyone. We've been able to get outside for walks the past couple of days in the evenings when the temp drops which has been really nice for both Maya and I. She rides in her Kid Kart and I do the walking. On the way back we swing by the park for about 10 minutes for her to play then home. It is really wearing her out which is both good and bad. It is hard to see a 6 year old get tired in 10 minutes when most can run for days and not need to come home and rest the rest of the day/night. Oh well, it's still the most awsome thing to sit there and watch her play, giggling at her own antics. Most recently she's realized I DON"T like snakes so she likes to call out "snake" when I'm not paying attention.

I've found something else Maya loves. They make these mini popcicles now. They are bite sized and in all the good flavors. She's actually eaten one or two every day and asked for them on her own. This is a big step for her since she's not too interested in food anymore.

I have to pause now since I just got a big hug from the Mayafly. If she catches you looking at her when she is playing or talking to herself she immediately gets up and comes to you with a big hug and kiss. Its so sweet. She follows it up with, "I love you forever and ever".

OK, back to my update. Maya's gastric output has increased over the past day. She had lots out of Tues and then slowed down, but the past couple days she's put out over 700/day. It is really dark, like bile so I don't know if it is from the manipulation of that new tube last Monday or something else. The good news is we finally got some new drainage bags which work so much better and allow her to really get around better when everything is hooked up. She didn't tolerate feeds at all this morning and has a cough and "funny" neck (sore throat) today. I think it is reflux since she has no other symptoms, but who knows. We'll give it a go again later and see if things are improved at all.

No work yet on a teacher for school. She did have speech on Thursday and Friday then will get Speech and PT at school next week when I take her in. Still working out all the kinks in everything. Only one pedi appointment this week then we start a string of Mayo appointments through September and October. Should be fun with the price of gas lately. No word yet on when she'll get her new tube placed.

Thanks for checking in on us. We've enjoyed the notes in the guestbook too.

Holly

Thursday, September 1, 2005 3:03 PM CDT

What a busy first day of the 1st grade! We started our day at 8am having Spanish with Senorita Dora then we had critical thinking with Steve and Blue at 8:30. Music was next with Barney and the Backyard gang then we took a break for formula and meds. At 10:30 Maya has speech with her speech teacher from school then we moved it outside for meteorolgy courtesy of God who provided the beautiful blue sky and clouds! Around 1pm we had science once again with some assistance from God and the lovely fall weather. We talked about the falling leaves and how they would change colors. Maya is of course on the lookout for both a purple leaf and a rainbow colored one. I guess I didn't get the whole point across, but at least this year she gets they are falling out of the trees and not the sky! We finished up the day coloring and drawing pictures of what we saw outside. Actually it was a wonderful day with great weather she could actually enjoy outside. We are still working out the kinks with homebound schooling, but have speech and PT set up at this point. She even has homework tonight which she's reminded me of at least 20 times already! I'll try to add some pictures of our day.

Yesterday we went to see the pediatrician and had labs. Maya's potassium was pretty low again so we added that to her TPN, but otherwise things looked good. Some low grade temps the past couple days, but nothing over 102. She's got some significant breakdown at the site of her central line, but other than that her skin looks pretty good. She had an episode yesterday a lot like she use to have when she was younger where she couldn't support her trunk or sit up, but it was short lived and she slept most of the day and night. Today was a great day!

We are still waiting to hear from Mayo about upcoming appointments, but I'm not calling to push them since we are enjoying our time home. Seems like months and it has just been 3 days! What an odd life we live.

Maya's career of the day: "Mama, I think I will just be a pirate when I grow up!"

Holly

Tuesday, August 30, 2005 3:09 PM CDT

Hard to belive, but we are actually back home again! We got home last night around 7:30 and then I had no internet access until they came and fixed my cable this afternoon.......anyhow......

Maya is doing really well. She has recovered from her most recent line infection and is off antibiotics for now. She is thrilled to be back with her kitty and back at home. She showed this to me by pulling an "all nighter" last night in celebration of coming home. Today she's spent most of the day talking on her calculator..not that she doesn't have a dozen play phones! Aside from the lack of sleep we are settled in and enjoying our day. She remains on TPN and also some J-feeds. Before we were even able to get out of the hospital yesterday her J port on her GJ flipped back into her stomach and she had to be taken down to interventional radiology to have it replaced. Since this is becoming such a frequent problem she will most likely go to Mayo some time in the next month or so and have a new J-tube placed so she will have a button for her G and one for her J. We also had to have her cecostomy tube replaced on Saturday so she has all new tubies for the time being.

School is suppose to start on Thursday so we are trying to line up Maya's homebound instruction with little progress at this point. She is really looking forward to getting back into the routine of school and I hope things work out for her soon. Tonight is the back to school open house which I'm planning on taking her to and then tomorrow we return to the clinic for labs, appointment, etc. We don't return to Mayo for another two weeks for appointments so it will be nice to hang out here in town for awhile.

Thanks for checking in.

Holly

Friday, August 26, 2005 3:59 PM CDT

Holly and Maya are back home at Skemp in La Crosse! Transported this morning. They are in room 524. Info at bootom of site. I will be gone this weekend, so I will not be able to update for a few days. Testing showed little motility in her small intestines. The doctor gave her a plan on how to deal with the GI flares. Looks like it is associated with her neuropathy.


Karla

Wednesday, August 24, 2005 10:04 PM CDT

Holly wasn't able to talk to the doctor yet. She did speak to a resident who told her that it looks like Maya's upper GI is contacting to push things down, only to push it back up again. A little out of sync it sounds like. That is all we know for now...hopefully tomorrow more info will be provided!

Karla

Tuesday, August 23, 2005 10:49 PM CDT

Just a quick update to let you know that the testing was done today. They were reviewing the results this afternoon and will hopefully be ready to share the results with Holly tomorrow. Maya is happy they are done. She did NOT like those tubies!


Holly is going on 2 nights without sleep. Hopefully tonight she followed my orders and went to bed early!

When I called tonight, Holly was out of the room for a minute and Maya answered! She has never answered when I've called before. She sounded SOOOO cute and grown up. When I asked if I could talk to her mama, she said, "Yes, but she is not here right now!" Oh I love that girl!!!


Please continue to PRAY! I will update tomorrow with any news.

Karla

Monday, August 22, 2005 10:47 PM CDT

Just a quick update to let you know everything went fine today. The doctor did a scope and thought everything looked good inside...he even saw some contractions in her GI tract. Maya woke up very upset about these tubes that were placed, so upset that they weren't able to do anymore testing today. They will attempt that tomorrow. This test will measure the contractions in her intestines and colon as water goes through. It should be interesting!

A Maya funny for the day! Maya's nurse was in helping her yesterday. He had very hairy arms. Maya sat there stroking his arm, telling him that he was soft like her Pookie! LOL!!!!! The visual is just too much for me!

Hope everyone has a great week. As you go about your daily life, please keep both of them in your thoughts and prayers. Holly has missed so much of the fun that summer brings being in the hospital so much, even though she would never choose to be anywhere other than near Maya's side....

Karla
www.caringbridge.org/wi/jacobdavid

Saturday, August 20, 2005 10:53 PM CDT

Update on the Cincinnati Chics! LOL Maya's C-tube fell out overnight at some point, so a new one was placed today. However, they didn't have a true c-tube, so a make shift tube was placed. The test is set for Monday. They will sedate her and place the tubes which will monitor the activity or nonactivity of her intestines and colon. Tuesday, the testing will be completed and hopefully soon after they will set up a plan of action. No word on discharge until after the testing is completed and they know what they are looking at. There is hope of getting Maya's feeding increased, but after an increase today, she threw up, so they backed it down a bit.

Well, Holly and Maya had some excitement today! They had grand plans of walking over to the zoo for a nice outing...you know get away from the hospital, have some nice mom and daughter time? Well, upon getting to the zoo, they realize that Maya's c-tube is bleeding, Maya ends up not feeling good, so she threw up, and all of a sudden she is having major problems with the heat. After renting a stroller only to have to return it almost instantly, Holly picks Maya up and starts walking the couple of blocks back to the hospital. Did I mention how hot is was outside and the walk is almost all uphill? Oh yes....not only is Maya having issues with the heat, so does Holly. After sweating so bad that she feels like she is dripping, Miss Holly decides to one up her daughter and starts to get dizzy. By this time, Holly is setting Maya down to cool herself down a little, and the hospital personnel sees this, asking if Maya needs to go to the ER. It is then that Holly tells them she is already inpatient! They ask if Holly is feeling okay and needs to be sent to the hospital across town. Needless to say, they sure made quite the pair I think! LOL After a couple hours, Holly cooled down enough that she started feeling better and Maya was so exhausted from the heat, that she fell asleep. Oh....not to forget that the only animal they saw was a snake that was going across the sidewalk on their lovely hike back to the clinic! What a great day huh????

Please continue to keep both of them in your thoughts and prayers as you begin a new week, especially Monday and Tuesday as they complete this testing.

Karla

Thursday, August 18, 2005 10:03 AM CDT

Good morning! Yesterday brought a lot of excitement in Cincinnati! Maya had an EEG, EKG, and MRI. But wait until you hear the cool part! They had a DORA MRI room...yep, you read that right! Can you even begin to imagine what Maya's reaction was? Oh my....I told Holly that she better watch out because from now on, every MRI she has she is going to expect the Dora one! LOL Normally, she has to be sedated for them so she lays still. This one however had these cool goggles they wore to watch a movie during the whole procedure...kinda like virtual reality. Very cool. The other cool thing is they have a view master menu. You simply look into the view master and on there are pictures of the menu choices. I am definitely sharing this with the Family Advisory Council at Mayo! How cool..

Maya seems to be doing okay overall. TPN is still not at the correct dose they want, but they are working on that. At the beginning of the week they will be doing the test that will show if and/or how much is moving through her gut. It is THE test everyone is anticipating the results of.

I will update more as I hear from Holly. Please keep them in your thoughts and prayers. I think she is a little homesick.

Karla

Tuesday, August 16, 2005 7:21 PM CDT

Hello everyone! I heard from Holly earlier this afternoon and they are all settled at Cincinnati Children's. The flight went fine. Maya had all the transport team laughing with her cuteness. Maya and the nurse played cards on the way too. Once they arrived, they got settled and the GI doctor came in to see them. There has been many tests scheduled, starting tomorrow already. As they receive the results of each test, the doctor will be in close contact with her doctors back here. Sounds like they are in a very nice hospital, cute and cheerful, very child-like. The doctor and staff have been very wonderful so far. We all miss her like crazy here, but know that this is the best place to be right now.

There is an e-card service that the hospital provides, so if you'd like to send an e-card to Miss Maya, you can click here. I have added the hospital information at the bottom of the page.

Karla

Tuesday, August 16, 2005 7:39 AM CDT

Good morning! Holly and Maya are heading to Cincinnati this morning. Cincinnati Childrens has arranged for air transport. They will be picked up around 9:30 this morning via ambulance and brought to the airport where they will leave around 10:00. It will be a 2 hour flight. The pediatrician in La Crosse is very excited that with this visit will come some direction and a plan on how to deal with these constant GI issues. Maya's urine culture is also growing 3 different bacterias, meaning this infection is more a result of her gut leaking bacteria.

Yesterday, we went to visit them before their big trip. Maya had received some fingernail polish from a girl from church, and so both Devin and I got our nails painted. I have one silver hand and one purple. She wasn't quite sure she was going to share the purple with me at first, until I pleaded. Devin had one blue hand and one pink hand, but asked me to please change the pink hand to blue. LOL It was quite the beauty parlor kind of day!!!

Last night, the pastor and his wife, and one of the elders and his wife, came to visit and pray over Maya and annoint her with oil. Maya also received a Dora tie blanket from the church with We love you Maya embroidered on it. It has been so great for both of them to have such an awesome church family to support them.

Please keep Holly and Maya in your thoughts this morning and over the coming weeks. They are still waiting for a negative culture, so they will be in at least 14 days from that point. This may be a long stay to try to figure out where to go from here. I know I am going to miss seeing them all the time! Meanwhile, Pookie has made himself comfy in our house again. I will keep you all updated as I know more today.

Karla

Saturday, August 13, 2005 9:25 AM CDT

Good morning everyone! Maya's cultures started growing...gram negative infection this time. That explains why she was so sick and out of it this time. Her blood sugars are really high anytime they start the TPN, so right now she is getting fluids. Her GJ tube came out again and so they are only using a G tube now so she can at least get her meds. Doing this means she has to lay on her right side. Maya's pediatrician talked to Cincinnati and it looks like Maya will be going to Cincinnati Children's Hospital either Monday or Tuesday to see the GI doctor there that they have been wanting to get into see. Hopefully, they can make some decisions on what they should do next. I will keep you all updated on the progress there! They switched back to their regular room 524 yesterday, which is nice so Holly has an actual bed to sleep in.

Karla

Thursday, August 11, 2005 10:59 PM CDT

Maya is back in the hospital. She was just not acting herself this AM and was unable to stand up, didn't like any kind of noise, etc. Maya had appts at Mayo, so she went. After the neurologist examined her she said she needed to be admitted, so Holly took her back to La Crosse and had her admitted to Skemp. Not sure what is up....her cultures from the other day were fine. They've redrawn blood and urine cultures. She slept the whole time since they arrived at Skemp, only to wake long enough to get x-rays. I will know in the AM if they are staying. Meanwhile, you can find the room info below.

Karla

Wednesday, August 10, 2005 7:00 PM CDT

There are times when a mom just knows their child is getting sick. Then there are the times even a rock would know the child was getting sick! For instance.......you are playing with said child, decide to take a shower, leave said child with their leap pad, a movie, and a popsicle and return less then 10 minutes later to said child having tucked themselves into bed and sound asleep!!!! This was our evening tonight. I know she is a little on the dry side so I'm hoping that once we get some extra fluids in her she perks up. We also have a culture cooking, but that is more on the precautionary side than anything.

The past few days we have gathered school supplies so they are set to go. The purple and pink Dora backpack is packed to the hilt and ready for September 1st to roll around. Yesterday we headed to the dermatologist for Maya's recheck. We are thinking maybe she is reacting to her dressing and it is causing her to itch all over. We basically have been doing daily dressing changes and living on benedryl, zyrtec, and ice packs. Today was her visit to the pediatrician. Her K was pretty low so she is going to get some extra in her TPN this week and her BUN was high so we are adding some extra fluids too. She's putting lots out her g-tube so that's most likely where the loss is coming from. She's not really been herself for a week or so, but with 3 anesthesia's in 10 days it is hard to tell if it is anything or just the after effects of that.

Right now the plan is to continue to try to get to Cincinnati once they call back to reschedule and continue pushing ahead with what we've been doing. Tomorrow we head to Mayo to see infectious disease, neurology, and the neurologist she sees for her sleep disorder. Friday she goes back to the pediatrician to TPA her line and see if that helps anything. The thought is maybe there is some slime (nice "medical" word, eh?) inside the tubing that may be causing her to keep getting infections. The line is also not flushing well and not drawing blood well either so we'll see what happens.

Thanks for checking in on us. I'll update again tomorrow after we see the doctors.

Holly

Sunday, August 7, 2005 5:21 PM CDT

We have had so much excitement here since my last entry I have to think where to start. I never thought I'd every say, "the weekend is lasting forever!" It's not that it was all a bad thing, just long.

Friday night we had Devin, Michael, and Jakey over so their mom and dad could go out for Daves birthday. The kids seemed to have a good time and although I was running late and they were waiting for me when I got home I think it all worked out in the end. Friday afternoon Maya and I went to the Children's museum with her friend Lindsey and her mom. The girls really enjoyed themselves and it was nice to see Maya playing with someone. Anyhow, we lost track of time and this was why I was late for babysitting. The kids were all good and Maya was out by 7:30 that night. I played lots of Simon (remember that game with the flashing lights you had to echo?). Saturday we ran errand and then went to see, Sky High. Very cute movie and Maya even watched and enjoyed it. (many times she just sleeps though the movies). Part way thought the movie she complained of her tummy hurting so I rubbed her tummy and laid her back a bit. She seemed better so we continued watching the movie. When it was over she didn't say anything, but as I was putting her in her carseat I looked down and there on the pavement lay her G/J tube. This then sent us straight to the hospital so it could be replaced. This requires anesthesia and interventional radiology and becomes quite a production for something that only took about 4.5 hours from the time we walk in the doors until we walked out. Maya did well with the anesthetic, but then decided to come home and pull an all nighter. I've decided she wants to see how big the bags below my eyes can actually become before the explode! Since we were up so early we got to church on time and Maya actually went to Grace Place! That is our children's church and usually she won't go. I'm not sure if it was having her new purple wheelchair or the fact her friend Lindsey came to church this morning, ,but she went and seemed to have a good time. She can't tell me a thing about it, but seemed in a good frame of mind afterwards. After church we headed to Jakey's for his 3rd birthday party!!!!! Tomorrow is his actually birthday so if you want to wish him well visit www.caringbridge.org/wi/jacobdavid and leave him a note in his guestbook. Maya had fun at the party, but it took some serious steam out of her. She's been on the floor vegging since we got home and looks like she could drop into a deep sleep at anytime. (this is a good thing for me!)

This week is pretty busy with Derm appointment tomorrow, Pedi on Wednesday, Mayo (3 appointments) on Thursday, another birthday party, and I'm sure a number of other things will pop up. I know she is itching to get school supplies so we might do that this week. School doesn't start until September 1st here so I can take my time. We may just get a few things each week to spread it out. My baby is going to be a FIRST GRADER! Can you believe it?

Thanks for checking in on us.

Holly

Thursday, August 4, 2005 8:35 PM CDT

A pretty uneventful two days......just the way I like it.

Wednesday we went to the pediatrician and for her weekly labs. Things looked pretty good if you don't count her skin around her port site. It is so broken down, red, and very sore. She is using ice to help with the discomfort and it seems to do the trick. I'm glad we found a non medication way to deal with the pain. We've often wondered if all the breakdown doesn't contribute to her infections so that is always weighing on my mind when she's broken down like this. Her hemoglobin is stable so we are good there and the rest of the labs were not too bad although she did have a low CO2, but not so low we needed to do anything about it at this point.

Yesterday evening we went for a walk and to the park. She likes to go where there are big trees and play hide and seek. This of course just involves her yelling, "I'm over here, I'm over here!" Pretty funny to hear her giggle though.

Today we hung out and I cleaned the apartment and washed rugs, shower curtian, and anything else I could get my hands on. Maya just played the day away and took another ride in her wheelchair while I walked this evening. Yesterday we went to get a bird feeder for her window....somehow we came home with a PURPLE WHEELBARROW and no bird feeder. She claims it is to haul her treasures around and to pick up her "stickses". I'm not sure how she scams me so well, but the poor birds will be going hungry this winter.

I have to share......the other day Maya wasn't feeling well and wanted me to rock her in the morning. I was rocking her and she said she was feeling better and ready to go play so before I set her down I hugged her and told her "I love you forever." I followed that with "and I'm going to keep you forever, and ever, and ever". This is something I tell her so often I didn't think she even paid attention, but she turned around and said, "Mama, you can just keep me for'one'ever today, my nurse is coming to play with me today with me and she needs and ever." She is so funny sometimes.

Thanks for the messages and for checking in on us. We appreciate it so much.

Holly

Tuesday, August 2, 2005 2:31 PM CDT

FINALLY!!!!!!!!! Internet access..........

Well, we've been busy in the past week since we got home from the hospital. First of all we've gone back twice to have her G/J tube replaced and then when we were there on Sunday her hemoglogin had dropped almost 2 points just since last Wednesday. She received blood about a month ago and is usually able to go at least a few months before she needs a transfusion so it was a bit strange. She'll have labs again on Wednesday when we go to the clinic so maybe we'll know more then.

We had a couple of trips to Mayo planned for this week, but with all the excitement over the past week Maya hasn't been up to herself and add the heat and traveling and the doctor and I were concerned it might be enough to push her over the edge. We rescheduled for later this month and will take it from there.

Maya was glad to come home again and we finally have everything unpacked and organized. Feels good to be settled in. We are planning on cincy again for the end of the month if all goes well and looking foward to hearing their opinion on what to expect and where to go from here.

I'll try to get some pics up soon from the past month and will be back to updating more now. Thanks for the support you've all give and all the e-mail's and guestbook entries. Thanks so much to Karla for keeping things updating for me too!

Holly

Friday, July 29, 2005 1:15 PM CDT

Maya was back in the hospital yesterday morning to get her J-tube replaced. Wouldn't you know it....home just long enough to unpack. LUCKILY they were able to do it in La Crosse so she didn't need to go to Mayo and was able to come home by the afternoon. Holly was able to have a nurse come over this morning for 4 hours, so she got some awesome time away!

Thanks for all the well wishes!

Karla

Wednesday, July 27, 2005 7:06 AM CDT

Holly and Maya are HOME! They got home yesterday afternoon. Maya finished up her 2 antibiotics for the 2 infections and they were off. Maya seems to be feeling really good. She was all busy playing when I brought Pookie home. Maya has a doctor appt today and on Friday they are hoping to pick up her new purple wheelchair! As soon as Holly is able to get online she will update more. Her computer is acting up.

Karla

Sunday, July 24, 2005 10:18 PM CDT

Holly and Maya are scheduled to come home Tuesday instead of today. Maya developed an infection around her cecostomy tube, so they are doing antibiotics for that for a few days. Maya is finally tolerating her feeds a little, so hopefully one day soon she will be back where she was with the feeds.

Thanks everyone for your thoughts and prayers. I know Holly appreciates it!

Karla

Thursday, July 21, 2005 7:08 AM CDT

Sorry I am such a bad updater this time! This week has just slipped past me.

Maya decided to pull an all nighter Sunday and Monday nights. Yep, no sleep beyond the first 1/2 an hour each night. To make it worse, she didn't take a nap either!!

Tuesday was Holly's birthday. She received 3 cakes, 2 from the hospital and one from a member of her church, flowers, balloon, and lots of cards and well wishes. I went up with her favorite chicken from Fridays and we watched Big Brother together. Maya was SOOOOO tired, it wasn't even funny. She begin to talk in utter nonsense, which was a pretty good indication that she was beyond tired. I heard stories about how she was going to play hopscotch in her garden and make her favorite shapes and favorite numbers, oh and don't forget the purple turtle that was going to play with her! Holly and I were laughing so hard. She was hilarious. As she fell asleep, FINALLY, she was having lots of problems itching. I felt so bad for her. No matter what they try, she has horrible itching, everywhere.

Maya's taken some steps backwards in her feeding again. It seems that everytime she has an infection, it sets her gut back again. This is very frustrating for everyone involved. Hopes are that she can get into Cincinnati this time without having to make a detour to the hospital.

Plans are to come home Sunday night. Please keep both of them in your thoughts and prayers.

Karla

Sunday, July 17, 2005 11:56 AM CDT

Hello everyone! Didn't mean to keep anyone waiting. Things continue along the same course. Maya seems to be doing good overall. They are taking off the suction at night, so she is doing a little better with output from her cecostomy tube. Hopefully one week from tomorrow they will get to go home if things continue to go well.

Tuesday is Holly's birthday!! Please think of her and wish her a happy birthday!

Karla

Wednesday, July 13, 2005 10:08 PM CDT

Good evening! I've talked to Holly many times today. Today has been better than yesterday. Maya was hard to wake up and also had a seizure so Tuesday was a little stressful. Today she seems much more like herself. She will be in at least 12 more days. Hopefully she will be home as soon as her meds are done! She is still having lots of gastric output and stooling, so hopefully she can be off suction for those issues soon. Please keep both of them in your thoughts. Regardless if Maya's been in once or a hundred times, it doesn't ever get "easier."
Thanks for all the entries in the guestbook. I know Holly appreciates it!

Karla

Monday, July 11, 2005 7:20 PM CDT

Good evening everyone! Maya continues to have a fever and some pain in her gut. Last night was a long night for both Holly and Maya. Today she seems to be feeling a little better. Cultures came back positive again, so they drew a peripheral sample as well and will culture that to see if the bacteria is also in her blood, not just at her port site. After consulting with the infectious disease doctor at Mayo, they stopped the antibiotic and started her on two more, with some other plans for antibiotic treatment over the next few weeks. Maya will be in the hospital for at least 14 days from her first negative culture, which they haven't achieved yet.

Maya always amazes me with her ability to have such a happy, playful attitude no matter WHERE she is. When we visited on Friday, she was quick to tell Devin where he should sit and that she wanted to teach him how to do patacake, since he obviously wasn't doing it the right way. Today when we visited, Maya made Michael stay on her bed, and when he pretended to be sleeping, she'd say, "1,2,3! WAKE UP MICHAEL!" They also had to do puzzles together. When Devin tried to turn the puzzle so he could see it, she kept on insisting it was upside down, so she'd turn it around so she could see it. Devin would tell her it was upside down (for him) and she'd say no it's not! Finally Devin got sick of arguing with her and did his own puzzle! LOL Devin must think Holly lives at the hospital as much as she does at her home because he asked her if she brought his blue box full of toys she keeps at her house for him so he could play with them! Silly kid....

Keep happy thoughts coming for both of them. I know they'd appreciate any little pick me up that you can think of.

Karla

Wednesday, July 6, 2005 8:40 PM CDT

7/7 UPDATE! Holly got a wake up call from the doctor early this morning. Maya's culture grew out within 12 hours, so she is once again on antibiotics for a line infection. She is at Franciscan Skemp in La Crosse. Info is below.

Karla


Hi everyone! Sorry for the delay in updates. It's been busy here with company and moving. Last week we got everything ready to go, went to the doctor on Wednesday and then moved Friday and Saturday. Thanks to tons of help from our friends we were able to do it and are settled and even unpacked!!! My mom was here too until this morning which was a wonderful visit and Maya really had a good time with her Nana. Maya and Pookie love the new place and as soon as I get the chance I'll post pictures. We also went swimming at Nana's hotel this weekend and have pictures from that too. Maya went down a BIG waterslide for the first time and liked that but mostly loved just floating around and playing.

Today we went to see the pediatrician. Things looked pretty good although they did draw a culture and her hgb is low. Tomorrow is the big day. We are leaving for Cincinnati in the morning with an appointment in GI on Friday. I'm praying we are able to get some guidance as what step to make next. We'll be flying back in on Saturday so I'll be sure to update then (I know...you are saying, "sure you'll update!!") Really though, I will update then and try to get the pics up this weekend too.

Thanks for the thoughts in the guestbook and the many prayers.

Holly

Sunday, June 26, 2005 8:27 PM CDT

Good evening everyone. What a busy weekend I've had trying to get ready to move. I haven't even started packing, just trying to go through things, etc is taking a lot of time. You would think I haven't cleaned out a closet since we moved it, but the truth is I JUST cleaned out about 2 months ago for a rummage sale so who knows where this stuff all comes from!

Maya and I went to see Herbie on Friday afternoon and she liked most of it. She even laughed out loud a few times, but then retreated to playing magnadoodle. That's a good movie though when she actually acknowledges it is on the screen. She continues to be very tired and when her labs came back on Thursday she is fairly anemic so she may need blood sometime soon. She's not usually symptomatic when anemic so I'm not sure why she's so tired, but I'll take sleep any way I can get it. She also has this sore on her mouth and breaks open and bleeds frequently. Not sure about that either, but overall she acts ok....except for the 2 naps and early bedtime. I realized today we are winding down on 5 months since she went on TPN. I mean she was on it in the fall on and off, but since Feb 1 she has counted on it for her source of nutrition. It's nice to see her feeds creeping back up where we see the light at the end of the tunnel as far as her coming off TPN, but it is always an uncertianty as to when the next ball with drop.........or if it even will. Right now we are just enjoying our time and enjoying her feeling so good.

This afternoon we watched Devin and Jacob which Maya really enjoyed. She likes to do Jakey's tube feedings "all by myself" and does a pretty good job of it too.

The past few days she's been so interested in questioning everything I do. Whenever we are driving in the car and come to an intersection she will ask what "path" we will be taking and where the "path" is going. What she wants is it to be put into Doraeeze. If we are going to the grocery she wants me to say, "First we go under the bridge, then past the McDonalds, around the curvy corner........until we get to the grocery". She's also taken to thanking me in Spanish and doing all her colors/numbers in Spanish too. Unfortunately I can't do her pronunciation justice, but it is a riot sometimes.

Thanks for checking in. Just one trip to Mayo this week and one doctor's appointment here in town...........an easy week as far as that goes.

Holly

Holly

Thursday, June 23, 2005 12:49 AM CDT

HOT!!!!!!!!!!!!! What more can I say. Maya melted just getting to the car. The nurses at the clinic were so nice and kept her inside until I could pull the car up after her appointment. She really stuggles with the heat, in fact she came home and took a nap.

Our appointment was uneventful this morning and her labs are still out. I'm sure they are fine so I'm not too worried. She's doing really well and tomorrow is our "four weeks at home" anniversary. I record for this recent year.

The conclusion of our Mayo appointments were one with physical med/rehab and we just discussed her walking and therapy stuff. The other appointment yesterday that was long awaited was with the infectious disease doc. We got some good info and insite on these issues and he did a lot of labs to see if she has an immune deficiency. Don't really think she does, but we don't want to leave an important stone unturned. I also talked to neurology yesterday and most everything from Monday's labs looked good and so did her x-rays. The best part of our day though was meeting with the chaplain from St Mary's. She met us at the clinic to visit. Maya loves her so much and we really enjoy talking to her. I haven't heard on her EKG yet, but we already know she is tachycardic so that's no real news either. Med increases are going well so far and we are adding an anti-viral to the course also. This will be something she stays on for the most part. We still have several upcoming appointments at Mayo over the summer, but most are follow ups and very little testing. She does have some urological testing the beginning of August that won't be too fun, but we're avoiding the subject for the time being.

I have to share a Maya funny. She's always funny, but it's been awhile since I've shared............Sunday night she was walking the halls of "Uncle Donalds" and singing to herself a song she made up. It was somthing about an "Ugly, Mugly Mommy!" All the sudden she starts giggling and looks at me to see my response. She asked if I heard her song and when I told her yes and made a face she looked back and said, "that is so funny, I called you Mommy!" Nothing said about the "ugly" part, just the "mommy". She always calls me Mama so she thought it was hysterical and since then has been taunting me with several "mommy" phrases just to get a response. This morning she called me "mommy" and then repremanded herself with "Maya, He is not your Mommy.........He is your MAMA!" Funny girl!

Thanks for checking in on us!

Holly

Tuesday, June 21, 2005 6:08 PM CDT

Wednesday June 22, 2005
We are home! Tomorrow it is off to the pediatrician. I'll update after that.


Hello from Uncle Donald's house! Maya and I have been busy with clinic appointments and a few tests she's had ordered. Basically we're at the clinic all day then ready to crash when we come back to the house. We haven't done our visits here this way in several months and I forgot how much it takes out of you. Yesterday we walked to the clinic in the morning and were greeted in the afternoon by thunderstorms to walk back in. How is that for fun? The shuttle here doesn't have a wheelchair lift on it so walking or driving is the only option for us. If you've ever paid to park here you'd know why we choose to walk!!

As far as appointments go, there is always new information to process through. Yesterday we saw neurology and reviewed some test results from the past few months. The results kind of confuse a few issues so there are some other tests that need to be done on her skin fibroblasts and blood which we had sent yesterday. She also saw GI and we are working toward getting her off TPN over the next few months. Even if we can get part way off it would be so good for her. The great news is she's really growing compaired to last year and making some nice developmental strides. We increased some tummy meds and added another new one so over the next two months before we return we should know how those are going to do. Today we saw tehh developmental pediatrician and nephrology (kidney doc). The nephrologist had some tests she wants done and then to see her again next month after those come back. She mostly deals with the stone issues and also her kidney's ability to retain and/or get rid of different electrolytes, etc. We had a good visit with the developmental ped and have some new ideas on where to set limits, especially when she is inpatient and it is hard to know what behavior is coping or ok to let slide and when to maintain what we've been doing so she doesn't develop new behaviors. She's done really well this year with behavioral issues and we'd like to continue to see progress in this area. One of the biggest concerns in this regard is her schooling (or lack of as this year went). I have the information for getting an advocate to help work toward getting the educational services she needs. Basically, like he said, we will plan for the worst and hope for the best when it comes to school attendance for the next school year (it's still hard to believe my baby is going to be in first grade next year!) Tomorrow we'll see infectious disease, physical medicine and rehab. There are some other things scheduled from the past two days we need to do also including her EKG.

Thanks for checking in. We'll be heading home tomorrow afternoon and then going to see the pediatrician on Thursday. Thanks for all the great guestbook entries too, we've loved reading them.

Holly

Saturday, June 18, 2005 5:20 PM CDT

I thought I'd take today to tell you about the beautiful little bug who flits around my apartment all day. I've been informed she is a Mayafly. A Mayafly for those of you who haven't seen one is nearly 41 inches tall and weighs 39lbs. The particular species loves to dance and twirl and is always sporting a pair of purple butterfly wings. From what I can see, the Mayafly enjoys watching Dora, Blues Clues, Angelina, and Barney and can often be seen in her folding purple Dora chair blocking the view of the television set. When not otherwise occupied she can be found doing scissor and glue crafts, putting together puzzles, or playing lego's. She also has an obsession with stickers and all sorts of leftover pieces of medical equiptment. She's been known to take on humans several times her size over a discarded syringe cap or paper backing off a dressing. The Mayafly at times has super-butterfly strength allowing it to cart around a very hefty cat and demolish the living room in just under five minutes. During it's more quiet moments the Mayafly's been known to teach Spanish to a Barbie doll and take thousands of imaginary photographs of invisible rainbows. She is sustained primarily by IV nutrition and some tube feedings and therefore is often slowed by a couple of obnoxious beeping pumps that follow her most of the day. This creature can write her first and last name and knows all her colors. She can count to 30 and sings God Bless America and Tomorrow as loud as she can with little or no provication. This bug is one of the funniest you'll ever meet and lives to make others laugh, at the same time she is tenderhearted and caring.........yep, I've been blessed by the Mayafly.

Friday, June 17, 2005 3:41 PM CDT

Good Afternoon. We've had a busy day. This morning Maya had to go to Mayo to have her G/J and C tubes replaced. Wednesday before we went to the clinic I looked at her and her G/J tube was hanging there with the balloon on the outside. In the old days not a big deal since I could replace her mic-key buttons at home, but with the J tube we have to make sure it is far enough into the intestine to be effective. They x-rayed it and it was in place so we secured it with tape and a dressing and waited to hear from Mayo as to when radiology could replace the tube. After waiting all day yesterday we finally got a call about 6:30 last night that we needed to be there at 7:30 this morning. We got up about 5,got around, and left by 6. Once I got there I realized her C-tube is 9 months old and due to be replaced also so since we were there they called the surgeon and he ordered it so the radiologist could replace the tube also. Maya flew threw the whole thing and we were home by 1:30 this afternoon. She was so funny on the way out though. The nurse had given her a butterfly sticker and she LOVES butterflies. She was a little loopy from the meds so she was just talking away. Anyhow, she looked at the nurse and said, "Oh boy, I have never rided in the red van with a purple dress on, after surgery, with a rainbow butterfly sticker before!!!" Now make that long, drawn out and dramatic and you get the picture. she also had one long drawn out crying episode about the part of the ID band they cut off when it is too long. She was holding it when she went to surgery and it got thrown away along the way. Once she realized you would have thought she lost her best friend the way she tied it on. She kept telling the nurse, "I am just so sad I lost my red piece of trash!" (also long drawn out and dramatic). She certianly can be a drama queen at times :)

I think that is our excitement here. Hopefully the weather will let up this evening and we can go play a bit outside. Now that we have a secure tube and are not awaiting any doctor calls we can go have a little fun. Sunday we'll be leaving for Mayo again and I hope to update while we are there as it will be several days.

Thanks for checking in.

Holly

Wednesday, June 15, 2005 9:01 AM CDT

Not too much exciting going on here. Sunday we went to church and just got things in order around here. It was pretty hot during the beginning of the week so Maya had to hang out inside. Tuesday evening it did cool down enough that we were able to go to the park for about 15 mintues before bed. Maya is really enjoying the new park at the end of our street. We've had lots of running to do getting errands done and things caught up before we get busy again the next few weeks.

Yesterday Maya's speech teacher from school came by in the morning to finish up some testing for school. They'll do it again at the beginning of school to see if maybe next summer she'd qualify for extended school year. Maya enjoyed having "school" again. She really misses working with her teachers and I have to limit her on how much of her summer school work she can do each day or she'd be finished with it already. She really loves to sit in her therapy chair and do her school work or craft activities. Yesterday we made molds of our hands so we'll see how those turn out when the dry. I have to admit it was not on Maya's list of things she'll let me to again. You had to plunge your hand into this gel stuff and you would have thought I was trying to kill her, LOL. I guess those sensory issues are still there :)

This afternoon she goes to the clinic for her labs and appointment. Her skin is pretty broken down so I'm not sure what we can do about that. I really wish we could find something that works better for her, but she is so itchy. We've tried every dressing I think there is available. She's also been having crying spells and has been pretty tired by afternoon each day so I'm not sure if it is her anemia or just the way things go for now. Summers tend to be hard on her because of the weather, but I'm not sure if that is the case or not. Overall she is doing really well though. She will see infectious disease next week when we are at Mayo though to look into why she is getting so many infections. It will be a busy week from the looks of things.

Thanks for checking in. I'll update later if anything changes after her appointment.

Holly

Saturday, June 11, 2005 1:32 PM CDT

Hi everyone. It is so hot out today I thought Maya would melt just getting to the car. It is humid on top of it and she does not do heat at all anymore. I'm hoping summer isn't all going to be hot or else we will never see the light of day again :) Maya has actually gotten overheated sitting in our living room in the morning because we get direct sun in through that window. I keep the air on all the time so that is helping some, but the heat is not her friend which irritates her to no end as she wants to go the the park, "so very bad". We are actually getting a swing/trapeeze that will hand in the doorway so she can do some of that fun stuff from the comforts of home and not have to miss out on too much fun. Our sprinkler park isn't open yet and the pool really isn't much of an option at this time so we are looking forward to the sprinklers starting up so she can have some summer water fun.

Maya is doing really well with her tummy. She is tolerating her feeds at 20cc/hr for about 10 hours a day which is a step in the right direction. She also continues to get her TPN right now, but it looks like the one medication we added to help the nerves in her gut do their job is really helping. We are still going for another opinion per her doctor's request and this will be in Cincinatti in July. After that we should have some better plan for getting her off the TPN and back on tube feeds. I'd like her to continue wanting some oral intake too. She's actually eaten a bite here and there so thats a good sign she has some interest. This week she's seemed to have lots more output through her G-tube, but she's been active and feeling really good so we'll take what we can get.

She's really missing her cousin Autumn and wants to know when they'll be seeing her again. She also misses Jakey and his family as they've been on Jake's Make A Wish this week. I actually think she is bored of her Mama and wants someone else to play with, LOL! Next week she only has her pediatrician appointment on Wednesday and then the week of the 20th we are at Mayo for three days of appointments. She sees pretty much everyone except for genetics and urology which she'll see in August. After we get home from that we'll have to start packing since we are moving the 1st of July. We aren't going far, just across the parking lot. The other aparment has more room and easier accessability for when we need it. Where we are now is hard with her wheelchair, suction, etc and it is also on an incline which means she needs help sometimes on the sidewalk. This one is on level ground, gets no direct sun, has more room, and.....drumroll please...... has a washer and dryer in the hall for each set of apartments to share. It may sound small, but when you are dragging laundry, a sick kid, and soap even half a block away to do laundry every day it is a huge change. With Maya getting overnight IV's she goes through lots of diapers and sheets so we do lots of laundry, nevermind all the tube leaks we encounter in a week.

I think that is all the exciting news from our house (pretty sad isn't it??) The best is yesterday was 2 weeks since Maya has been in the hospital. That's the longest home since the 1st of February!!!

Take care and thanks for checking in on us.

Holly

Thursday, June 9, 2005 8:03 AM CDT

Well, we went to the clinic yesterday and things looked good. Maya's weight is holding steady and we are slowly increasing her J-tube feeds. She has a long way to go to get off TPN, but soon maybe we can begin to wean her down on her calories. Maya is really growing height wise and has gained some good weight so the TPN is doing it's job of delivering good nutrition to her. No one has heard from the one doctor yet so we are planning on going to Cincinatti in July to see a GI doctor there. Yesterday's labs looked good so far. There was a culture done so that will take a few days, but her HGB was steady. It is always low, but it hasn't dropped anymore so that was good. I didn't hear about her metabolic panel, but from the way she acts I'm sure it is fine.

Maya's doing really well except that fatigue has been a big issue. She doesn't really have much energy and is napping and sleeping lots, but when she's up she UP! I figure if she can really enjoy herself when she's awake then she needs to sleep to regain that energy. As long as she controls this I let her go. If she stops letting herself regain that energy through sleep I'll have to watch her activity a bit more.

Not too much else here. My brother is still in town so we watched a movie last night and we'll see each other this evening. Maya just loves her Uncle Mitch. I'm going to put up the pictures today from her time with her cousin.

Thanks for checking in. No more appointments this week--yipee!

Holly

Tuesday, June 7, 2005 10:02 PM CDT

Sorry for the delay in updating. My brother, his wife, and daughter were here for a couple of days and Maya has been having a blast playing with her cousin. The last time they met Autumn was a baby. The girls hit it off right away and had fun playing together last night and all day today. Today we started our morning with a quick couple rides at the park and since it was really hot we headed inside for the children's museum and to the hotel pool. Maya is exhausted this evening, but had a wonderful time today. It is always a trade off on how much you decide to limit her activity knowing what it does to her, yet not wanting to deny her the chance to just be a kid once in awhile. This was a really special day for her so we just let her go all out. She LOVED every minute of her day and cried when her cousin left tonight. They are heading back to Washington tomorrow and then Uncle Mitch will be here a few more days as he has some work to do in the area.

I hope to have pictures ready to post tomorrow. Speaking of tomorrow we have a busy day ahead too. In the morning we have a meeting and then she has her clinic appointment with the pediatrician and labs for her TPN. That should pretty much take up most of the afternoon.

In case you were wondering what was up with Maya's other GI opinion........we still don't know. I'm hoping to find out something more tomorrow. Otherwise we are sitting tight and doing well...OUTSIDE the hospital!

Thanks for checking on us! Please say a prayer for our Jakey as he is on his Make a Wish and a very sick little guy right now.

Holly

Saturday, June 4, 2005 8:30 AM CDT

Good morning everyone. I am beginning to hate mornings as we are having a terrible time keeping Maya dry at all at night. She isn't getting anymore fluid then before and I'm still getting up at 2am to change her, plus I am double diapering, but I'm changing sheets twice a night again. We had this under control, but with this new TPN change it is getting worse again. All I can think is that because we increased her glucose this is the cause. Of course, this is a little thing compared to what we could be dealing with so it is just an annoyance. OF course, last night wasn't much better than this morning. I went to flush Maya's port and it wouldn't flush and had no blood return. I ended up taking out the needle and putting a new on in, starting all over. Not only is this a sterile procedure, but Maya hates it. She has such bad skin issues that when you have to clean it with the cleansers (similar to alcohol) she crys that you are burning her. It is also not a one person job, but late in the evening what choice is there, but to just do it?! We did get it done although I'm not sure the neighbors enjoyed the experience any through all the crying and screaming. It worked just fine after we got it started again although there was some drainage at the site. No fevers though so we'll have to see what becomes of it.

Yesterday was a pretty low key day. I haven't been feeling well with some sort of respiratory virus and fevers. It really isn't that bad, but takes a lot out of me by afternoon. Maya is so sweet though, everytime I cough she stops what she's doing and comes and asks if I'm ok. Of course if I'm sneezing she comes and tells me, "no sneezing Mama!" It was pretty warm out so Maya didn't get to go outside at all. Today is pretty overcast, but I'm not sure what the weather is like. I'll most likely try to get her out for a bit later. She really doesn't like to do much for long anymore. Give her 10 minutes and she's worn out. Some days are better though and she'll push herself more. She never complains though.

Tomorrow we'll go to church and then on Monday Uncle Mitch and his family are coming. Maya hasn't seen her cousin Autumn since she was a baby so it should be fun for the girls to play. Autumn is 3.5 now so I think they'll enjoy each other's company.

Thanks for checking in. It is always so nice to know we have so many supporters out there praying and caring.

A Maya funny: Yesterday Maya was singing a song from the show the Backyardagain's. It goes "Yippee Yi Hi Ho, Texas here I come" only the way she heard it and her version went, "Yippee Yi Hi Ho, Pepsi here I come" then she went on to tell herself, "Maya you don't drink Pepsi, you drink diet." So off she went marching and singing, "Yippee Yi Hi Ho, Diet Pepsi here I come"

Holly

Thursday, June 2, 2005 1:47 PM CDT

Well we made the trip to Mayo and back yesterday....that's about all there was to say about it since the one appointment we waited over two hours for and never ended up seeing the doctor and the other was for five minutes only to tell us, nothing we didn't already know about her skin breakdown and itching. So...it was a long day.

We started our morning yesterday at the pediatrician and getting labs. Labs looked good minus a low hgb, but that is pretty normal for her. A few tweaks to her TPN for the week and we were good to go (2.5 hours later). Can you tell how tired yesterday made me?! The good new is it was the last of the IV antibiotics so that will be a timesaver for sure. Now she just gets her meds, TPN, and a couple doses of another IV med daily. Of course her meds are in the double digits so it is still time consuming, but we are use to it.

Today is too hot for her to be outside so I'm hoping tomorrow to get up early enough for her to go outside for at least a few minutes. She really doesn't tolerate anything above 70 and less that that if the sun is out. She stays busy though and has started pretending a lot more. (or just talking to herself...however you want to look at it, LOL). I'm adding new pictures to the photo album today from the other afternoon we went to the park and of her on her Dora bike.

This afternoon is Maya's last day of school. Her teacher will be here soon in fact. Maya will really miss school and her teacher. She always wakes up and asks if it is a school day. Hopefully next year she will actually get to go to school more and have less homebound schooling.

Thanks for checking on us. Don't forget to sign in once and awhile. Maya loves to hear who is reading her page.

A Maya funny: Ever since Maya started losing teeth and encountering the tooth fairy she's decided there are fairies for everything. Today I ran over my toe with her wheelchair and she told me "It's ok Mama, the toe fairy will come and get you a new toe". This afternoon she was playing in the other room and I heard her tell herself, "don't worry if your kiester hurts, Maya...the kiester fairy will come and fix it"

Holly

Tuesday, May 31, 2005 10:29 AM CDT

Sometimes it amazes me we've only been home four days. It seems like we've been home all along. Strange how quickly you forget. I commented to someone yesterday how good Maya was doing and was quickly reminded we just came home on Friday! Oh, well, I guess it is a good thing you forget so quickly.

Saturday we went to some friends for dinner. Well, dinner for me, playtime for Maya. She had fun with the other kids although it is a quick reminder of how she deviates from the norm and isn't like every other six year old. Sunday morning was rough for her. She didn't tolerate meds or formula and had low blood sugars. Not really low, but 50's and 60's. More just something to keep an eye on. I was able to run pedialyte after her TPN was finished so she had some fluids and sugar going into her. She perked up as the day went on and seemed to recover on her own. Yesterday we went to another get together and she enjoyed playing outside for awhile. I forget how much summer and the heat affect her. It was only about 70 and she was in the shade, but she still overheated after about 15 minutes and had to sleep it off. She never really recovered the rest of the day although she did play more later. It is a constant reminder of what a thin line we walk on with her. I hate to limit what she can do, but at the same time the limitations are necessary for her to maintain some picture of health. She came home and instantly fell asleep and slept until this morning. (16 hours). Once again she woke up feeling pretty good and giggled to no end when I vacumed the carpet and the cat freaked out and when bounding around the room. I have to admit it was one of the funnier things I've seen. By the time I finished her meds this morning she was wretching and throwing up so we backed off a bit and she's laying down watching....big suprise here....DORA. I think she is really feeling ok now, just pushed her over the edge with meds. She's looking forward to school this afternoon, but not too pleased we are off to the doctor again tomorrow. We are going to see Dr Brumm and get labs in the morning and then to Mayo for nephrology and dermatology in the afternoon. It promises to be another long day.

I have to share another Maya funny...
This weekend we discovered Maya's shoes no longer fit so we ran out to get some new tennies. We ran all over creation it seemed with little success. She needs shoes with good support that don't weigh much and are really flexable. We ended up at the mall and were going from department store to department store. As we were in Marshall Fields we passed the ladies department and there were several women looking at clothes, holding them up, etc. As I pushed her by she kept saying, "your a pig....oink...Oink!" Now before you think I allow this behavior let me explain that in the car we'd been playing a game where she would say "your a (insert animal)" and I would answer with the sound and vice versa. Needless to say the spill over from this game provided me with my share of embarrasment as we walked through the store.

Thanks for checking on us. I'll update tomorrow after her doctor's appointments.

Holly

Saturday, May 28, 2005 4:23 PM CDT

Good afternoon. I think I may finally have some sort of order around here and have gotten back into the routine of TPN, feedings, and meds. Maya has definately gotten into the routine of playing with her toys that she missed, "so very, very much!"

Last night went ok, but very little sleep was to be had. I think that will improve tonight as I tweaked her IV med schedule and TPN times so they fit better with sleeping. We are off the hook until Wednesday as far as doctor appointments, but Wed will make up for it as we have labs, see the pediatrician, go to Mayo for a couple appointments and somewhere in there take care of our daily routine. Maya's started itching again today and is back on her benedryl orally. It is not controlling the itching like the IV stuff, but because of the way her tubies are and her absorbtion I'm not sure we are going to get it any better than it is. Her dressing still looks good though although it is starting to peel so I think by morning that will have to be changed to. Not something she enjoys at all.

We are still waiting to hear about the testing she is needing for her motility. This is something Mayo can not do so we are looking at our options for this and where she needs to be seen.

One last Maya funny. Yesterday as she was playing with her bank I heard her saying something about "pennies and pickles" She went on talking about how much money she needed and how she didn't have any "pickles". It took me a minute, but I realized she had pennies and quarters, just no "pickles".

Thanks for checking on us.

Holly

Thursday, May 26, 2005 4:47 PM CDT

We are home...busy and tired, but home. Will update when I get the chance.

We are still here. Maya will most likely be going home tomorrow, but as you've seen that is always subject to change. She was set to go this morning, but then some issues were brought forward as to what the plan is for her care and the next step to reach these goals. After talking with social work and the doctor's they decided to try and come up with some sort of plan before we go home. I think that the doctor's were going to talk and then maybe we'll have a game plan at discharge.

When she does go she'll be on IV antibiotics for a week and then hopefully that will be the end of the antibiotics for awhile. The current course of antibiotics is for the infection at the site of her IV that was in her arm. Most likely once things are healed and she is infection free we will need to have some immune issues looked into since she is getting so many infections. She'll go home again on TPN and feeds then hopefully in the next month we'll get to go for another opinion on things. The doctor's feel they need this before they can move forward and form a plan. Most likely it will involve some travel to get this done, but whatever it takes is fine. I hate the feeling of floating around without a plan or goal and waiting for the next shoe to fall.

No plans for the weekend........Maya will keep me busy enough just getting things settled and home and getting meds done. I always feel like I have to unpack and reorganize just to be ready for the next admission. Of course I always hope their won't be one, but the way things have gone I can't really enjoy the luxury of not being prepared.

Maya continues......happy as ever. We had a good time today. She played in the playroom and we had a couple of rousing games of Sesame Street Chutes and Ladders. We sat on the waterbed and read stories, but she fell asleep so quickly decided it was better to find another activity. We did salt are, made magic wands, and several pictures. Right now she is watching a movie and playing with the pegboard.

And now for a Mayaism.......

"Today I want to do four things..hmmmmmmmmmmmm what would I want to do? Oh I know...I want to go to the playroom, I want to fly like a butterfly, I want to swim like like a fish, and then I want to go back to the playroom."

Holly

Wednesday, May 25, 2005 9:54 PM CDT

Maya woke up feeling good this morning. She slept all night again which is a miracle in and of itself. She is over her itchies this morning and no belly pain. We'll go home on antibiotics for her phlebitis, but are free to go today!! Once her TPN comes down I think we are good to go. They hung it at 4 so she should be done early today. Bloodsugars were lowish, but ok last night. We'll have to watch and see where they go, they use a different TPN here then we use at home so that may be the difference.

Today we accessed Maya's new port for the first time. Of course she HAD to have a purple star balloon from the gift shop first to get her through the experience :) The access went well and she has her TPN running. Unfortunately when we took out her IV she had phlebitis! She's now on antibiotic for that. I tell you, our black cloud has followed us here.

Tonight Maya was having a lot of belly pain. Not sure why, but her gastric drainage was very bile like which means she is mostly slowing down with her motility. She's sleeping now, but very itchy so we will see what morning brings.

She is still goofy as anything. Played with scissors and glue most of the day. Magic wand making this evening. She also got to see her Stacey today which made her "so very" happy.

We are still planning on going home tomorrow. Will update once I get there or if I find we are staying.

Holly

Tuesday, May 24, 2005 2:51 PM CDT

This morning Maya woke up with a big smile on her face. She has been sleeping so well at night now that we increased her meds and is waking up with lots of energy.

Last night she was pretty sore although she managed to play with a couple of friends who came to visit. She crashed once they left though and slept the rest of the night. I'm not sure she was even aware she fell asleep. Just went from playing to sleeping. We still haven't accessed her port-a-cath since they wanted to give it 48 hours to heal up in hopes we can avoid the chance of infection. She'll get accessed and go back on her TPN tomorrow. She's done really well being off of it so long and just getting her D10 and tiny j-feeds.

Infectious disease came in today to see about if there is anything we can do to try and prevent future infections. There are some ways to "lock" the line that in adults have shown to decrease the amount of infection. Hopefully after she goes for her second opinion we can reduce her other risks which are related more to her belly issues.

Not much else to say except that Maya's current movie that we are watching over and over is the Piglet Movie. It always reminds me of how she was doing about 2 years ago when that movie came out. I remember all the advertising done during Playhouse Disney and the songs stick in my head from then. Always makes me think of what a different place she was in then. Only her g-tube at night, meds, and school. No other major issues at that time and she was just a bundle of activity. We lived across from a park which we frequented daily and had many plans to go here and there. It is so different then the Maya I know now. The one thing that does stand firm is her happy, playful attitude. She endures so much without complaint and always has a smile for everyone that enters the room. She's eternally (ok, for those of you with kids with tubies, your find this amusing--the first time I typed this I put she was enterally funny by accident) funny and loves nothing more than to make you laugh. I can't actually say this Maya is all that different, just that there are so many things that are keeping her from doing the things she loves. It's so amazing to realize that she's spent nearly the entire last 9 months in the hospital except for brief times and tome and still we are no closer to any answers that would change anything. I think it would feel different if we had just spent 9 months in the hospital actually treating something and not just putting out fires.......but we haven't. Who would think that Piglet could stir up these kinds of feelings?! Guess I'm having an Eeyore day :) Maya is more the Tigger type, just happy to be hanging out with those she loves.

Holly

Monday, May 23, 2005 6:27 AM CDT

Maya is out of surgery. She didn't end up going until noon. She is still in recovery, but should be back sometime after 4pm. We are staying here for a few more days, but overall she is doing well. Will update more tomorrow.

The itchies strike again!! I don't know how Maya can be so itchy. We've tried everythng, but she continues to tich away. She'll go days sometimes without itching then we have a night like last night where she is just digging at herself. This time it was mostly her chest and neck so she had all her dressings off. Then she moved on to her IV site which was new last night and not easy to get in in the first place. She seems fine this morning though which doesn't suprise me as it seems to be mostly a night problem.

She did lose her IV access yesterday and it took a few tries, but they were able to get another one in. this is actually in a better place and not positional like the last one was. The other one limited her use of one hand which put a serious cramp in her crafting style!

Yesterday we had some company from church. It was nice for Maya to have someone to play with other than her Mama. She really enjoys other kids and doesn't get much of a chance to play with them so it was a real treat for her.

She is on the surgery schedule for today and should go sometime late morning or early afternoon. Once the line is placed I think she'll be heading home in the morning. There was some talk yesterday of her needing to be put back on her TPN slowly since she's been off of it for several days now, but I'm not sure what the final decision will be on that issue. I've learned not to plan too far ahead since somehow that plan always changes.

Thanks for checking in and I'll update when Maya gets back this afternoon.

Holly

Sunday, May 22, 2005 11:30 AM CDT

Maya continues to do well. She is happy to be crafting and is looking forward to hitting the playroom later today. This morning we took a walk down stairs and the silly girl thought that she could "skate" on her IV pole! We have company coming this afternoon and she is looking forward to showing them the playroom too.

On the medical front there is nothing new. Maya is hopefully going in tomorrow for her new line and then will go home from that point. I think she should be good to go then for awhile and we can stay home! Such a novel thought. I know that she's "so-very happy" to have that line out of her neck and is actually tolerating her IV quite well in her hand. She's not had a peripheral site in so long I wasn't sure how she'd do. Her neck is healing and would be healing faster if she wasn't itching at it so much. She is the itchiest kid sometimes. Labs were good today and her blood sugars are hanging in there with just the D10 so she is doing well in that aspect too.

Not much else to say here. Please keep our caringbridge friends and their families in your prayers today as so many are not doing well right now.

Holly

Saturday, May 21, 2005 2:22 PM CDT

Update!! I finally have computer access! At least for awhile. I just waded through hundreds of e-mail...updating myself on on my friends on caringbridge, etc. It is like getting together with an old friend when you finally get back online after weeks. I'm sure you didn't come here to hear about my wierd computer obsession so I'll talk about Maya.

Maya was glad to come to Mayo for the "playroom and my Stacey", but "miss the purple nurses with their pants" (the nurses in LaCrosse wear purple pants). Maya's been uncomfortable this afternoon so we hooked her suction back up, she's only needed it at the night past few night, but it always seems to help so we are trying it. Her neck is bugging her where they removed her line too, but mostly because she is itchy. She has an IV in her right hand which also ticks her off a bit.....regardless though she is crafting away. We are going to have a Hickman placed on Monday and home on Tuesday. She'll hopefully be going to Kansas either in June or July for some motility testing that can't be done here and maybe even some answers as to what we can do next. She was started on Mestinon on Sunday which may help her gut some as it deals with the nerves and this is where many think her problems are. It is a little more complicated then that, but that's the general idea. She is just getting some IV fluids until Monday so she's a bit cranky with no TPN to keep her going. Thanks for checking on us.

Hello everyone! Sorry it has been a few days since I've updated. Thursday, Maya had an appt with the neurologist at Mayo. Jacob and I tagged along with. Yesterday, Maya's jugular line started coming out so they pulled it. The dr called Mayo to see if they could put a new line in right away. They agreed, and so Holly packed quickly and went to Rochester. When she got there, surprise, surprise, they said they were going to wait until Monday. She is finishing up her antibiotics this weekend, so hopefully she will be able to go home a day after the line is placed, given everything works out well.

Maya has found a new past time. She LOVES to comb and fix Jakey's curly hair!!! She is too funny. Her fingers just fly through his hair. Holly babysat Jacob yesterday morning for a little while before the excitement started, and Maya and Jakey were snuggling in her bed. Maya has even found ways to make Jacob laugh. It is just too sweet :)

Hope everyone is having a great weekend! Keep our girls in your prayers!

Karla

Wednesday, May 18, 2005 7:01 AM CDT

Good morning! I talked to Holly many times yesterday. The line on Maya's neck is "interesting." They are having a hard time keeping dressings on it. The dressings on her chest used to fall off easily, but the one on her neck is even worse since she tends to move her head more than her chest I am sure. It has become an ordeal to change the dressings...poor Maya's skin is so sensitive and burns when they put the alcohol on to clean it. It is not easy for Holly, but then again, what do you do? It has to be done to keep another infection away.

Maya had school yesterday. She was able to identify the number 18 very easily which was so awesome! Something Holly had never seen her do before. She also wrote out her full name. Very proud moments for the mama!!!!

I will keep you updated on the latest. They are waiting for word from Mayo on how long they need to continue this antibiotic before they can come home. Keep the prayers coming!

Karla

Sunday, May 15, 2005 10:32 PM CDT

Good evening everyone! After a weekend away, I am back to let you know how our favorite ladies are doing! After a discussion with infectious disease at Mayo, it was decided that Maya's port needed to be pulled. On Sat morning, Maya went into surgery. The port was removed, and an attempt to place a PICC line was made. After many, many attempts, they decided to place a line into her jugular. She has a line on the left side of her neck. After 4 hours of surgery, Maya was finally out. I went to the hospital today and she is doing better, but seems a little frantic in her artwork, which is usually her way of coping with pain. I did get a hug and kiss from my girl before I left. I always tell her, "See you later, alligator!" and she responses with an "after a while, crocodile!" Then I say, "See you round like a donut!" to which she said today, "I'll see you later like a hamburger!" She is such a nut!!!!

Keep both in your thoughts and prayers...this has been a long haul....

Karla

Thursday, May 12, 2005 10:33 PM CDT

Good evening everyone! Holly and Maya have moved into there favorite room, Room 524. It is much more spacious and Holly even gets her own bed instead of the "comfy" chair in the corner!

Maya will be in the hospital for at least another 2 weeks while they treat her infection with a couple different antibiotics. Except for a little tummy pain and nausea, she is her normal happy self, busy telling everyone how to do their job!

I will keep you updated if anything new happens!

Karla

Monday, May 9, 2005 8:00 PM CDT

Tuesday Update: Maya's culture grew out some bacteria again after the poop incident yesterday. They are back in Skemp in La Crosse, rm 521.


Good evening. I hope all you moms had a wonderful Mother's Day.

We relaxed this weekend as Maya wasn't feeling 100 She did get off her suction long enough to go to church on Sunday and to a friends house for lunch and to play for awhile. Today was a different story. Maya's been feeling really good this afternoon and after the way our day started I'm so pleased. She was even up to having school this afternoon with her teacher.

This morning she awoke to a huge mess and not contained by any amount of diapers, sheets, clothing, or anything else for that matter. This in and of itself is a challenge, but when you throw in a fresh surgical incision from Thursday and a central line that is far from fond of poop...........well, need I say more? I quickly ran outside to see was was keeping that large black cloud just over our apartment then back in to take care of things. I then realized it wasn't the black cloud, but rather the curse of the Iwantyouinthehospital gods. After getting cleaned up which involved dressing changes and taking her port needle out we headed to the clinic to see the doctor. Things looked pretty good although she is really not tolerating much in the way of J-feeds right now. Thank goodness for TPN since this is what she is surviving on right now. She did get a blood culture and a hemaglobin drawn and her port re-accessed then we were home just in time for her teacher to come.

Maya was so excited to see her finished "young author" book she'd made and the picture frame her class made with all her favorite things glued on it. We'd collected these last month for them and they include a purple crayon, scraps of punched paper, a bracelet, hair bow, and her absolute favorite--syringe caps! She's a funny girl sometimes. Today the lab lady brought her some plastic pipettes like they use in the lab and she has had more fun playing with those then anything.

Tomorrow she just has school then Wednesday we are off to Mayo to see a couple of neurologists and Thursday back to the clinic to see the pediatrician for her TPN labs.

Thanks for checking in........as always we love to hear from you in the guestbook.

Holly

Saturday, May 7, 2005 11:14 AM CDT

Well, yesterday we ended up spending most of the day at the clinic. Maya did pretty well after her biopsy, but was up several times that first night with her tummy. She ended up not feeling well by morning and since we were going in for labs anyway she must have figured she'd make it worth her while, LOL. Basically she slept the entire day including the 3.5 hours we spent at the clinic. She did wake up to throw up, but that was about it. Labs looked pretty good though so we came on home. She's been on suction for most of the past 24 hours which has helped her belly and she's up and playing this morning after sleeping all day yesterday. I just moved her suction machine in the living room so she can still play and watch her movies. Not sure how she'll do after her TPN is done for the day since yesterday she had some issues with her blood sugars when she was off and she isn't tolerating much of a feeding at this point so it doesn't really offset that at all. She's had some bleeding from her tube, but not enough to be concerned about and it has actually improved as the day goes on.

She is in the midst of a Chicka-Chicka-Boom-Boom marathon right now with it on auto replay on the TV. I must say I thought reading the book hundreds of times was bad, but this is worse! Not too much else here. Yesterday was a beautiful day......warm and sunny!. Today is rainy and cooler, maybe tomorrow she'll be able to get out some.

Thanks for checking in.

Holly

Thursday, May 5, 2005 8:18 PM CDT

What a long day today has been. We got up before 4am to go to Mayo for Maya's muscle biopsy. At the same time they went ahead and did a full thickness rectal biopsy to see if they can get some idea what is going on in her intestines. Maya did really well, although it did take her some time to wake up after the surgery (a few hours!). She did finally wake up and came home doing really well. She is sore from the muscle biopsy and I didn't even bother telling her she had the other biopsy although she told me a couple times her bottom is hurting. She making it with just motrin for pain and up and walking. In talking with the surgeon today we will look at what the results are of the rectal bx and decide from here if further biopsies or some surgery to actually treat some of the intestinal issues are needed. Most likely we will need to get another opinion from a GI who sees more kids with motility disorders to make this decision.

Some of you may wonder why a second muscle bx as those who've known Maya's history the past 4 years know that she had one in the spring of 2002. The biopsy then did not have a great sample and in addition there are some other tests they'd like to do on the muscle since we now know the extent of her small fiber neuropathy and the extent of issues she's faced these past 9 months. It feels odd to be searching once again for answers when for so long we just blamed things on her primary dx not thinking there could be something else going on with her. She actually doing amazingly well metabolically since she started TPN although we are now facing a whole new set of issues with her gut, neuropathy, and pain. I'm sure we'll look back in a couple years and see this as just another bump in the road on her journey. She likes to mix it up and keep everyone hopping.

Tomorrow is her follow up with her pediatrician and labs for her TPN. I'm expecting she'll be a little more sore tomorrow as she is still riding on the tails of the anesthetic and pain meds she had in the hospital. As for today's Maya story let me just say she had the anesthesiologist and others in the OR under her spell today. She started collecting her "treasures" (trash to the rest of us) right away after they wheeled her in to get her ready. She wanted every scrap of paper the electrodes were peeled off of and every syringe cap. When I met up with her in recovery she had a baggy full of "treasures" from the OR tucked in beside her. They saved her a bunch of stuff from her trip to the OR then the post op nurse filled in the gaps with a few thermometer covers, bandaids, EKG wires, and whatever else she could find. Maya was in heaven and played all afternoon with her "stuffs". I swear this child's dream shopping spree would be in the medical supply store.

Thanks Karla for keeping us company today........sorry I nearly starved you :) Jakey.........thanks for keeping things exciting and giving your Mama something to do while I was busy with Maya!

Holly

Tuesday, May 3, 2005 9:12 PM CDT

We are home!!! We arrived home yesterday afternoon and are very happy to be here. Maya promptly fell into her normal home routine, but I'm a bit rusty so it is taking me longer than usual to do some of the daily stuff like her TPN and meds. We also have a new member of our medical supply family as Maya came home with a suction machine so we can have intermittent suction for her cecostomy as she needs it. So far........no need. Hopefully things will continue to improve. The next 4 weeks will take us up to Rochester weekly for appointments, but those were planned before this past stay anyhow.

Maya is done with her IV antibiotics and she will get another culture drawn on Friday at the clinic and get reaccessed then too. We also started a couple of new meds while we were in and they are going smoothly too. One is to help protect her liver and the other is for her restless leg/sleep issues. She's sleeping currently so I'd say it is doing it's job. Last night she did manage to get her entire dressing removed on her line so at 3am I was busy doing a dressing change. She is just so itchy at night.

Today Maya had school and loved every minute of it although she was not wanting to stay on task toward the end. Afterwards we went outside since it was sunny and the type of day she tolerates well. She rode her Dora bike for about 10 minutes before coming in for a nap. She's napping everyday again, which I must admit isn't all bad.

I'm posting new pictures today so take a look! Thanks for checking in and for all the prayers and support while we were at club med.

Holly

Thursday, April 28, 2005 3:02 PM CDT

On the next episode of As Holly's World Turns....Or is it the Young and the Restless??? Anyway, Holly and Maya are back at Franciscan Skemp in La Crosse. Lots of back and forth ideas and whatnot between Mayo, Holly, and Skemp, so for now, they will stay at Skemp until they can get Maya off the suction to her g-tube. I know this all seems confusing, I think all of us are to some extent, but things change many times in a day. All of this adds a little excitement to the day and a challenge to one's sanity! LOL Anyway....keep prayers coming her way. I updated the hospital info on the bottom.

Karla

Tuesday, April 26, 2005 2:37 PM CDT

Things continue to go okay. Maya was able to eat a popsicle yesterday, or should I watch it melt? That would probably be a better description. There is discussions on surgery sometime this week maybe to change her G-J tube and do the biopsies they are wanting. Maya is back to her cutting and artwork. She seems to be feeling better. Holly's gotten a chance to visit with some of her favorites that work at the hospital and is expecting lots of visitors from church and others she knows from the area. We will be heading up there on Sat, so I will try to take some pictures to add to her site.

Karla

Sunday, April 24, 2005 8:41 AM CDT

Update: The nurse is in with Maya so I thought I'd hop in and update myself for a change. Thanks to Karla for keeping this updated for me since I don't have a working computer here yet. Maya is slipping back into her St Mary's routine of cutting, glueing, and crafting away. She has her purple scissors snipping away for most of the day although playing with syringes and water is another favorite pasttime she's developed.

Medically she is doing well. No temps since Friday and she looks so good. We are hoping that two weeks of the antibiotics will clear her port and we won't need to replace it at all. Once we get the OK from infectious disease there are some biopsies and tests they are going to do to see if they can find the reason she continues to have all the infections, neuropathy, and gut failure. Hopefully these can be done while we are here and before she manages to get sick again. Right now she remains on her TPN, antibiotics and her g-tube and c-tube and to drainage. As of this time we haven't resumed her J feedings, but will most likely do this sometime this week. She wasn't getting much, but every little bit helps as this is one way you can help protect the liver from damage done by being on TPN.

Not sure when I'll get back to update, but I'm sure Karla will soon. Thanks for all the prayers and for all the support you've given us. Maya looks good and I know it is because of all those behind her.

Good Morning! I am so sorry it has taken me so long to update...Maya was transferred on Friday to St Mary's in Rochester. They are going to be doing some testing and work with another dr to try to figure out the best way to handle her current problems as well as get a better idea of where/what to do from here.

Holly and I had been planning a rummage sale for a long time. Our whole development out here had sales, so it was a perfect time to do it. Last weekend before Maya went into the hospital, she was working on getting her rummage sale stuff together. Luckily, she had everything she wanted sitting out, but she didn't get around to marking it. Knowing how much Holly wanted to get rid of the stuff, I took it all over to my house, marked it and put it out for her. We sold SOOO much stuff and it was awesome to get rid of everything!

I will keep you updated on how everything is going. Meanwhile, keep praying!

Karla

Wednesday, April 20, 2005 11:12 PM CDT

Thursday Update:
There has been some questions on how or why Maya keeps getting infection after infection. First of all, the infection this time is different from the last one...this is a gram negative infection and the last one was a gram positive infection. This infection seems to be coming from her gut problems and is in her blood and urine. Because of her neuropathy and mito, she is having these problems. Anyone who knows anything about Mito knows this is a disease that often doesn't make sense. It has absolutely NOTHING to do with what Holly is or is not doing. She is an incredible mother to Maya...I can't even begin to tell you how much both of them have touched my life. To continue fighting and fighting for what she feels is the best choices for Maya is BEYOND commendable. While some in similar circumstances may feel beaten down, Holly is not going down without the BEST fight she can give for Maya. She is often asked how she can stand being in the hospital so much...it's not like she CHOOSES to go there on vacation or something, but I do know if it means doing what is best for Maya, she'd live there forever....And she needs everyone to support her in the decisions she is making, even if you might not understand it.


Hello everyone! Maya had a rough day/night yesterday. She had lots of extra fluid, but after receiving some albumen and some blood, she looks much better. Temps are still a little high, cultures are growing numerous bacteria. The dr is in close contact with Mayo and working with them to figure out what to do. Nice to know that the dr is so very helpful and proactive for Maya's sake.

Holly had some visitors today. Her church family has been absolutely amazing at supporting her, stopping in to say hi, praying for her. It is so nice to know she has so many people caring for both her and Maya.

I will keep you updated on Maya's progress.
Always hope...

Karla

Tuesday, April 19, 2005 2:35 PM CDT

Hello everyone! After a fun weekend at the movie and the park, Maya went to the pediatrician yesterday for her weekly labs and dr. visit. She was found to have a gram negative bacteria in her blood. She was admitted again last night at Franciscan Skemp, room 525. Please keep both of them in your thoughts and prayers. She just can't seem to get a break.

Karla

Friday, April 15, 2005 6:36 PM CDT

I can't believe it is Friday already. It actually seems like we've been home forever, but it has just been really busy. Tuesday Maya had school then Wednesday the nurse came to reaccess Maya and she had school again (at home). Thursday and today we went to Mayo. Whew! Looking forward to the weekend.

Yesterday was Maya's EMG and NCV along with autonomic reflex testing. She also had one of her weekly blood draws. Today she went to see GI first thing and he felt things were going well with the way we are doing things now. He discussed what's been going on and where to go from here. One thing he suggested is maybe refering her to Pittsburg to discuss a small bowel transplant or more medical options for trying to keep things under control. We'll see him again the beginning of June to see where things stand now. We followed with neurology next and the results from her EMG/NCV showed myopathy and the autonomic reflex testing showed she is not sweating at all in any of the testing. What was really being looked at is the degree of small fiber neuropathy she has and by that testing it is pretty significant. The thought is maybe this is the cause of the gut dysfunction and not the mito issues, but we would need some full thickness biopsies to determine that. Again, we'll discuss this further when we return in June. We are also going to see another neurologist who specializes in small fiber neuropathies and see if there is anything else she has to offer or testing she'd like done. We finished up with audiology (no changes) and then dermatology. Maya has some issues with itching and skin breakdown which they think is secondary to the TPN along with her sensivities to adhesives, etc.

Basically that was it. Maya was tired and ready to come home again today. Said her kitty Pookie was missing her...lol. She's been a bit on the tired side the past few days so hopefully she'll perk up over the weekend. She also has some med changes we'll start this weekend. Hopefully we can fit in something fun too.......maybe the park if the weather cooperates.

Thanks for checking in.

Holly

Tuesday, April 12, 2005 9:11 AM CDT

Hello from home!!! We got home yesterday evening around 8pm and Maya quickly went to work finding all the toys she had missed and dragging them out all over the place. She was so happy to be home with her kitty and her toys. Pookie moved right back in too, like he'd never missed a beat. I spent our first hour home trying to get her TPN ready and meds so it was a hectic first night home, but much better morning.

Maya was up several times last night complaining about the sores on her chest and tummy. Sunday she started to get sores around her tube sites and then they moved from there. She's dealt with them before, but mostly related to the adhesive on her dressings. These were not only where her dressings were though, but in other places. She really itches and although we are giving her meds to help with the itching it isn't always enough to keep her from digging at them. Yesterday we tried a new covering (duoderm) on them which appears only to have made the situation worse, but it's still too soon to really tell. This morning she isn't complaining so much so maybe they are improving or else the meds and tylenol are giving her some relief.

Maya is still having lots of bloating and distention. She is tolerating some small feeds during the day and then her TPN also. Its good to know that even when her tummy isn't up to supporting her nutritional needs she is still receiving what she needs. In so many ways she is much healthier now than before we went this direction, it just brings it's own set of new issues with it. Thursday we go to Mayo for some testing both at St Mary's and the clinic and then on Friday we see GI, neuro, audiology, the dietician, and maybe a second neuro if she can get us in. We may see her on Thurs afternoon too if she has an opening then. We are suppose to go to Madison then the following week to see GI, metabolics, and a peds surgeon, but we'll hear more on that as things get closer.

This afternoon Maya will have school with her teacher here at home and then we need to run and pick up the rest of her meds. I'll try to get some new pics up at some point too after things settle down this afternoon hopefully. Thanks for checking in on us and all the prayers and support while we were in the hospital.

Holly

Saturday, April 9, 2005 9:58 PM CDT

Hello everyone! Holly and Maya have been enjoying the last few days by going outside and blowing bubbles. It is so great how something like that can lift your spirits. The discharge date has changed to MONDAY! YEAH! They will have a few days at home before going to Mayo on Thursday and Friday. They are still waiting on an exact date for their Madison trip. Otherwise, things seem to be going okay. Maya was in her glory with visitors when we got there today and then was even happier with Michael, Devin and I to boss around on how we were supposed to make pictures for her. She is too funny!

Keep praying!

Karla

Wednesday, April 6, 2005 8:09 AM CDT

Good morning! Some news on the homefront....or should I say hospital front. Maya will be released next Wednesday. On Thursday and Friday, they have some testing with the neurologist in Rochester. The following week, they will go to University of Wisconsin-Madison for a second opinion. She will see GI, endocrinology, a metabolic specialist, and the surgeon. There is a large possibility that her colon will be removed. Please pray for guidance and strength for Holly. I think overall she is feeling good about it, just a lot to sort through and praying that Maya's best interest is always in mind.

Maya has been receiving school services at the hospital. Her homebound teacher is coming to see her Mon-Thurs for about an hour. She is taking pictures of Maya doing her work and bringing it back to her Kindergarten class, as well as bringing pictures of her class to Maya. What a wonderful way to keep connected!!!

Yesterday, Holly and Maya were able to go outside for a walk. I think it did a world of good to get out in the fresh air and do something normal together.

During my visit yesterday, Maya decided to pose for her pictures. You will have to check out what a goober she is!
I also took pictures of the room. They switched back to their favorite room, Room 524 yesterday. You can see how much they've move in! Looks cozy doesn't it???

As always, thanks for all your support to Holly and Maya. I know they truly appreciate all the thoughts and prayers!

Karla

Saturday, April 2, 2005 7:29 AM CST

Good Morning! Boy, I looked at Maya's journal and realized I haven't written since Wed! YIKES! I am so sorry Chuck! I know you like your updates :)

It seemed like they were going to be sprung yesterday or today, but since this is the second time she had staph in her port, they want to treat it longer this time. There would be a chance she could go home on antibiotics, but it would require a lot of getting up in the night, switching her TPN off, hooking up the meds, rehooking up the TPN. Just A LOT to do on her own. The doctor will come back in on Monday and discuss more with Holly on what the plan will be.

Maya was so darn cute again yesterday. I am confined to her bed when I am there. She needs my full attention and occasionally I can visit a little too :) We have a date to play Go Fish the next time I come back.

Things remain good on the Pookie front. It is so nice that Pookie feels at home while he is here and is able to go back and forth so easily. He definitely has made himself at home since this is where I found him yesterday!


Hope everyone has a wonderful weekend and remember to leave Holly a message on the guestbook. She truly enjoys when I read all the messages to her.

Karla

Wednesday, March 30, 2005 1:26 PM CST

Hi everyone! Maya has been in rare form the last few days. I went last night to see them and WOW! She was wild! LOL She informed us that she was not going to sleep at all last night, she was keeping her eyes open. I was telling her that Jacob likes to say, "GEE GEE GEE GEE DA!" and when I asked her what she thought that meant, she said, "Maya doesn't have to go to bed." What a wonderful interpretation!!! I guess we can add interpreting baby talk onto her resume. She told Holly that when she grows up she wants to be a nurse, a firefighter, or a BEAUTIFUL princess! She is a riot. Hopefully she has calmed down some by today. It sounds like they should be out in a matter of a few days!

Karla

Monday, March 28, 2005 7:33 PM CST

Hello everyone! Holly and Maya are still hanging in there. The cultures have come back negative now, so on Saturday, she should be done with antibiotics. I went to see them yesterday and Maya was in rare form. She is one of the funniest kids I have ever met. There are times where she wants to be really defiant, but instead of throwing a huge fit like most kids would, she acts naughty in a very polite way! It's just too funny. She will say, "I can't want to do that." or "No thank you!" when you ask her to do something. Her biggest line yesterday though was, " I am so very very worried..." and then she'd insert something, like when she went to bed, she was so very very worried that she didn't have her bunny to sleep with. She just cracks me up!

Pookie's made himself at home at Auntie Karla's house. He's quite the cat too. He only wants me to feed him. If I am not up early enough for his liking, he will pat me frantically with his paws. Thankfully he is declawed!

Please continue praying for both Holly and Maya!!!

Karla

Friday, March 25, 2005 6:28 PM CST

Hello everyone! It looks like Maya will be in the hospital until at least next Thursday when the pediatrician comes back from vacation. The culture from her port grew another funky bacteria, so she is on antibiotics to get everything under control.

The good news is she lost another tooth! Her beloved nurse pulled it out today. Maya will not let Holly touch a loose tooth, but when Miss Nancy comes in, she sits so still! So far it is two for two for Miss Nancy!!! Maya's going to start thinking the tooth fairy only comes to the hospital! LOL

Please continue to keep both of them in your prayers, especially with spending another holiday in the hospital.

Karla

Wednesday, March 23, 2005 9:17 PM CST

The cultures came back today and they are growing staph again. UGH. She will be in the hospital until they at least get a negative culture. Please continue to keep them in your prayers.


Karla

Tuesday, March 22, 2005 11:45 AM CST

Hello everyone! It's Karla. Maya fell yesterday on her way to the doctor's and hurt her port site. The port is okay, praise God, but she is pretty sore and bruised. Please keep Holly and Maya in your thoughts and prayers! Not sure how long she will be in the hospital yet. The info for the hospital is on the bottom of the page.

Sunday, March 20, 2005 8:26 AM CST

Good morning everyone. Maya continues to not sleep well at night. Oh well, it was nice while it lasted. I really think if she gets blood tomorrow she might start sleeping again. Her anemia makes her restless leg symptoms worse and therefore she doesn't sleep well when she is anemic. We'll have to see what her labs show tomorrow, but if they are like Thursday's she'll need blood. Yesterday was a long day. Maya wasn't feeling well most of the afternoon and would only tell me her "owie" hurt. That really doesn't narrow things down as she has many area's she considers her "owies" and this one she said was inside. We continued our afternoon with tylenol and motrin and she did take a nap in the middle of the living room floor amidst all her lego's. We continue with the tummy trouble and she didn't tolerate her feeds well at all yesterday so we'll see what today brings.

We got quite a bit of snow over the past two days, but from the looks of it outside it won't last long at all. We have at least a foot and a half, but it is sunny and beautiful out today and suppose to be in the 40's this week so soon we will just be living in a big muddy mess! Oh well, it does mean spring is on it's way and not a moment too soon!

Tuesday we are suppose to go to Mayo for appointments with the physical med/rehab doc, sleep clinic, and wheelchair clinic. Hopefully we'll make it and she'll feel well enough to go. Next week we are back up there for a few days again so if we have to cancel maybe we can get them all pushed together those two days. Maya is looking forward to going to "Uncle Donalds" and is already anticipating our trip.

Thanks for checking in on us, we really do appreciate all of you.

Holly

Thursday, March 17, 2005 6:27 PM CST

Update Friday am!!! I think we are going to give her until Monday to see if her hgb recovers on it's own. That and the fact that we got dumped on with snow last night and it is suppose to continue until tomorrow morning so I'm not too thrilled about going out if things can wait. Maya did sleep about 3.5 hours last night, she was up by 2am though. Oh well, at least she just layed there talking and didn't insist on getting up.

I spoke too soon the other day when I said Maya was sleeping so well. She hasn't slept for the past two nights and it isn't looking like tonight will be any better. She has this viral infection going on with some sinus stuff and when she gets a viral infection she seems to always get anemic too, soooo today when her labs came back they showed her hemaglobin was down to 8.1, it isn't super low, but low enough it looks like she'll be getting a transfusion tomorrow or Monday. This is most likely the cause of her not sleeping also since when her ferritin is low she tends to have more problems with her restless leg issues.

Other than those little medical issues she's been doing really well. Yesterday her homebound teacher started coming over and doing school with her. She LOVES it and is so excited to be having school everyday again. It will actually be Monday-Thursday and then she'll also get physical therapy weekly. She has a special chair she is using for school and she sits in it much of the day doing her crafts and puzzles. It has actually worked out nicely for her.

There really isn't too much more going on around here. We pretty much hang around home and try to stay away from all the germies floating around out there. I'm also being told the same two knock-knock jokes she learned at Christmas at least 15 times a day so if anyone wants to send her some new ones feel free.

Thanks for checking in.

Holly

Tuesday, March 15, 2005 6:41 AM CST

I have to start by saying, Maya is sleeping so good at night finally. She is getting up about 5:30-6am, but sleeping through the night, including when I need to change her. I can deal with getting up early, but knowing she's not up to some dirty deed (ie: removing a dressing, removing one of the various tubes from her body, dismantling her bedroom, or destuffing her pillow) during the night is priceless!

Our weekend was pretty uneventful. We watched Miss Karla's dog so we went over there several times to let her out and Maya watched a bunch of their Barney movies she didn't have here at home (how you can have 20 Barney movies and still be missing some is beyond me!) while I played with the dog. Sunday we went to church and didn't do much else that afternoon. Maya wanted to see the Easter Bunny so on Saturday we did slip into the mall just before it opened and she was first to see him. We were able to slip out then before the mall filled up. We are trying to keep Maya from catching anything so the thought of the mall was out origionally. I drove by to see how croweded things were and there was basically no one there at 9:45 so we made it in. It was the first day the Easter Bunny was there too for the season so I figured no one had coughed all over him yet either. She missed the Santa visit this year so I couldn't deny her the chance to see him. She absolutely loved him.

Yesterday her teacher came in the morning and did some school with her. This is also part of the trying to keep her from catching anything, she is not going to go back to school right now. We then went to see Dr Brumm and get labs. Her TPN was changed a bit and everything else looked pretty good. Of course on the way home she started to get a cold sore again so we started treating that right away. There is some talk of maybe doing some additional testing to figure out what is going on with her right now and her gut so we did discuss that and will most likely get that set up soon.

I went by the post office to get mail on the way home and received the most wonderful package from a friend back home. We recently had to cancel Maya's trip to Florida and she sent us a box so we could bring Florida to Wisconsin! We came home and had a wonderful afternoon vacation in the living room, complete with ocean sounds (CD), ocean smells (candles), the sun (ok, it is Wisconsin so we had to pretend on that one), and a whole lot of fun with the beach stuff, pineapple, sunglasses, and etc. I took a picture of Maya last night with some of her stuff as she wanted to go "swimming" just "one more time" before she went to bed. I'll post it with the pics. It was nice to escape reality for a moment yesterday. Thanks Kim!

Thats about it here. Today Maya has some of her therapist coming from school. Not too much else planned. Thursday she has the nurse coming out to do labs. Thanks for checking in.

Holly

Saturday, March 12, 2005 7:37 AM CST

HAPPY GOTCHA DAY MAYA!!!!!!!!!!!!!!!!!

Four years ago today a beautiful little girl entered my life. She'd entered my heart several months earlier, but this was the day I actually was able to hold her in my arms. I remember how tiny she was and how quiet. She didn't make a sound and when she cried it was just silent tears, the kind that break your heart. She didn't cry much, just when I left the room that first few days. She was so trusting of everyone and quickly buroughed her way into many hearts. To see how she's changed over these four years is amazing yet much of what I see in her today I can look back and see was evident that first day I met her. She will silently study a new situation and when she is hurting or in pain those dark eyes pierce your soul as she looks for relief. At the same time she is quick to smile and loves a good laugh. She is accepting, trusting, and forgiving although many times she has good reason not to be. She endures like a champion and celebrates each day. When most people would have given up long ago she continues to forge forward, wondering what all the fuss is about. She is a strong, loving little person who has taught me so much.

When Maya first came home she learned to sign and for the first few years this is how she communicated. I was watching some home movies of her the other day and realized most of her signs she used so passionately are words or phrases she continues to use every day. Her dramatic side showed early on even before there were words to go with it. I've never seen anyone sign "stuck" so frantically, "please" with so much drawn out passion, or "help" with such rapid fire succession that you know she's just telling you to "get your butt over here and do something for me!"

I thought I'd add a few pictures in honor of this very special day for us and skip the medical stuff for a change. Thanks for checking in.

Holly

Holly

Thursday, March 10, 2005 7:49 AM CST

Good morning! We are getting such early starts anymore with Maya's 5am wake up calls! She is actually sleeping really well, just getting up early. There were some bed issues last night with a couple changes of sheets, but this was the first night out of the last few that has been a huge issue so it was easier to deal with. Just means we'll be making another trip to the laundry room today when it opens.

Maya is excited it snowed last night! She has no desire to go out in it, just excited to see everything all snow covered again. I'm actually glad we have nowhere to go in the snow too. Today the nurse is coming out to reaccess Maya's port and to do labs. Hopefully things will continue to look pretty good. She's having lot so itching and soreness at the site so I hope we can get a better look when it is changes and make sure it isn't getting red again. We have such challenges when it comes to dressing changes and adhesive/product allergies.

Tummy issues continue to be about the same. She is doing better overall, but still not where she needs to be. Much better than she was about 3-4 weeks ago though. Still waiting to hear about the second opinion too. I was so frustrated yesterday when the hospital here called to say they were "getting ready" to send out the medical records they were suppose to send over two weeks ago! I also called to get her biopsy results since they hadn't bothered to call me with them. The biopsy showed she continues to have significant gastritis, but nothing other than that. I'm not sure there is much else we can do as she's on several tummy meds already. We'll see GI when we see neurology on the 15th of April but I don't anticipate any changes.

Other than the nusre coming today we are free until Monday when we return to see the pedi then the following week we go to Mayo on the 22nd for 3 appointments. Maya's dentist appointment went well and she was cavity free. He was really pleased with how she is doing and just made some recommendations since she is not taking much if anything orally right now although she is starting to take some interest again.

Thanks for checking in on us. Continue to keep Parker in your prayers as he remains in the hospital Parker

Holly

Tuesday, March 8, 2005 7:32 AM CST

Things are seeming to be settling into a better routine around here. I actually only had to change the pad on the bed last night once instead of all the sheets 3 times like the previous nights! I think I have the overflow issue under control now. It seems to be those little things that are so hard to figure out. I also have gotten the bedtime/med/starting TPN routinue down to an hour which is pretty good.

Yesterday was Maya's doctor's appointment with the pediatrician. She was gaining wt at a pretty good clip so they cut back on her calories some in her TPN. We are going to try to go up on her feeds by a couple cc's an hour too from 20-22cc/hr. She only gets them 8 hours a day, but each little bit gets us closer to being off TPN. Her labs were pretty good with the exception of needing to tweak the TPN a bit to pull a few things back where they needed to be. Her HGB is still not back to her normal which is less than normal anyhow. It is 9.0 so not too bad, but not where we'd like it to be. Maya was happy to get out and see the outside world for a bit, but it must have wore her out as she slept all the way home from the office.

Today is her dentist appointment. Just a cleaning, but her first with this new dentist. I'm hoping things still look good. Since she isn't taking anything orally anymore there is some concern over how healthy this is for her teeth. She's always done well in the past so I'm praying things go smoothly.

For those of you who've asked about school. We are waiting to hear since right now the doctor's don't want her back in school and exposed to all the winter crud that seems to be going around. The plan is she'll get school at home until she's ready to go back.

Thursday is the nurse visit and labs again. Other than that we plan to hang out here and catch up on all this laundry.

Please keep our friend Parker in your prayers as he is in Club Med with some complications from his recent vagal nerve stimulator placement. You can visit him at Parker's Page

Holly

Sunday, March 6, 2005 1:11 PM CST

Not too much to say here. We are staying pretty busy getting things with her medical needs although things improve each day in the amount of time different tasks require. Last night I forgot to take her TPN out of the fridge on time so that backed up the whole TPN schedule for the day. Not a huge deal, but since I don't have a routine down yet it made things a little difficult. We are down to only getting up about 2-3x/night for changes and only a couple pair of jammies and sheets at night. I think it has to be an artform to keep your child dry at night when you are pumping them full of so much fluid all night. Needless to say I've already done 4 loads of laundry since we came home Thursday and have 2 more set to go! Of course a couple of the washers at the laudry are broken so I can't get it all done at once.

Anyhow, enough of my complaining. Maya is still happy to be home although she is still insisting that she is going to be getting a fish. She told me it will be purple, live in a bowl, and be named Dorothy. I have Elmo's World to thank for this new passion of hers. She also has taken to telling me to "turn off the sun" when it is shining in the windows too brightly. The things she comes up with sometimes are too funny.

Tomorrow is her return visit with the pediatrician in the morning and then the nurse will come out on Thursday to do her second blood draw of the week. She needs labs twice a week right now so thankfully these can be drawn off her port. She's still having skin issues around her port due to the adhesives on the dressing. Nothing we've tried has worked to heal this up, but I'm seeing some improvement day by day. It is a vicious cycle because the dressing we use that is less irritating to her skin is less than ideal because it isn't occlusive. We try to rotate them as her skin dictates, but she digs at them so bad sometimes we are going through several a week when they should only need changed weekly. Her tummy continues to get huge at times and pretty uncomfortable. She is still requiring meds for nausea, but only twice a day now. Her g-tube has had some funny looking drainage the past couple of days so I'm not sure what that is, but it seems to be clearing up on it's own. Hopefully we'll hear this week about her second opinion appointment. Other than that we return to Mayo at the end of the month to see the sleep clinic and rehab docs then in April for audiology, neurology, dev peds, and genetics. Of course, this is all subject to change depending on how things go between now and then.

Thanks for continuing to check on us.

Holly

Friday, March 4, 2005 6:52 AM CST

We're Home!!!! Hard to believe, but we finally made it. We got home yesterday afternoon and now comes the task of unpacking and getting reorganized. I got all the medical stuff put away since that is all I really had to deal with last night and then today I'm going to finish up with everything else. It is amazing all you can collect after a month in the hospital.

We've gone through several changes this month, the biggest being Maya is now on home TPN (IV nutrition). She is on this 16 hours a day and then on elemental feedings for 8 hours during the day through her J-tube. The feedings are less than an ounce an hour, but hopefully will encourage her GI tract to continue working some. She continues to need her g-tube to a drainage bag to help her deal with the natural tummy stuff that is produced and we are flushing her cecostomy twice a day, but that isn't really working real well. Although Maya is much less distended than earlier in the week it comes and goes. She measures anywhere from around 21 inches on a pretty good day to 26 when she's really bloated. We did change some meds around too to see if that would help matters, but didn't see too much of a difference. The plan now is to keep things as they are and then we are going to see another GI doc to take another look at things. He's reviewing the records now and hopefully we'll hear back some time next week.

All that medical stuff being said, Maya is thrilled to be home. We went into her room and was so happy with her new bed and decorations. She looked at each of her toys she hadn't seen in "so very long" and I'm sure it felt like Christmas all over again. She slept so good last night in her new bed and I'm sure it was from all the excitement. Right now she's laying on the couch watching TV. ("I missed my TV so much Mama!") Like there wasn't enough TV watching in the hospital!

The nurses at the hospital were all so wonderful at helping me care for Maya and taking care of so much for me that I'm sure this transition is going to take awhile to get use too. The getting up 3x during the night to change her is really for the birds and going to take more than a few days to adjust too. Her TPN runs at 170cc/hr (almost 6oz an hour) overnight so she gets really wet.

Another change is that Maya isn't going back to school at this point. She'll have someone come out and work with her here at home for now. She woke up this morning and when I dressed her she asked if she was going to get to go to school today and disappointed when I told her no. She followed that by, "well what ARE we going to do". She is so social I'll have to make that up in other ways. We are trying to keep her from much germ exposure at this point among other things as any little infection just seems to take a toll on her gut even more.

I'm going to try to update pictures later today from the hospital so check back later. Thanks for checking in and for all the happy mail and notes people have sent both by snail mail and on-line. They really do brighten both our days and get us through each day. We appreciate all the thoughts and prayers we've received this past month too.

Holly

Thursday, March 3, 2005 7:03 AM CST

Yesterday, Maya's port site was a little red, so they cultured it and if everything looks fine, they are coming home today!!! PLEASE keep them in your thoughts and prayers! I will update if things change, otherwise hopefully Holly will be updating soon!

Karla

Tuesday, March 1, 2005 8:35 AM CST

Hello everyone! Things continue along. Formula was started again, but at a very slow rate, just enough to hopefully protect her liver from the TPN. Things are getting settled for going home soon. Orders and plans have been made for home TPN. Maya was up a lot Sunday night with pain, so yesterday, she was little Miss Sassypants and quite wild. Hopefully today will be a better day!

Keep the thoughts and prayers coming!

Karla

Saturday, February 26, 2005 10:51 AM CST

Good morning! Things took a step back a little yesterday. Maya is really bloated again and so they decided to stop her feeds completely and do strict TPN. The feeds were running in hopes of protecting her liver from having straight TPN, but at this time, she just cannot tolerate them. Her tummy was down about an inch since stopping them, so hopefully that will help. Her c-tube was also hooked back up to suction to help with cleaning out her colon since that just isn't working either. A little discouraging I am sure.

Maya seemed to be in good spirits overall though. She has started snapping her fingers and has learned that she can snap them and wish for people to do what her princess commands! I don't think Holly's falling for that, but it is worth a try I am sure! LOL

Continue signing her guestbook. Holly enjoys when I read the messages to her.

Karla

Thursday, February 24, 2005 9:47 PM CST

Okay....I am awful! I haven't written since Monday! Everything continues to be about the same overall. Maya has some distension in her tummy since they stopped suctioning her c-tube. This causes her to be a little sore, but otherwise she is in good spirits. There is talk about maybe coming home next week?!?!? Or at least thinking about talking about it! LOL Saw Holly and Maya tonight. Of course, Maya wanted me for herself, but it was Mommy's night! We had to get our Survivor fix. Maya has learned how to wink. It is the funniest thing I have seen in a LONG time. I tell ya, that girl can bring a smile to your face so easily. Gotta love her :)

Karla

Monday, February 21, 2005 10:43 PM CST

Maya and Holly are settled back in the hospital in La Crosse. The plan is to start cycling her TPN so eventually she will get a couple hours free in the morning and at night. Maya started a new formula yesterday that is an elemental formula, which basically means she will not have to digest it. The rate and concentration is low, so basically it isn't so much for nutritional reasons as it is to protect her system from being straight TPN. Today, her cecostomy wasn't working so great on suction, so they were needing to adjust those issues a little. Things continue to be okay overall and hopefully there will be talk about discharge someday!

Karla

Friday, February 18, 2005 4:02 PM CST

SATURDAY UPDATE: Maya was transported back to La Crosse this morning. While I was visiting today, I took some pictures of Maya. Maya said,"Mix Karla, (her version of Miss Karla!) can you put my pictures on the website?" So you will have to check them out!

Talked to Holly. Maya did fine through her scope. It looks like she may be transferred back to La Crosse as early as today.

I appreciate all the comments in the guestbook. I hope Holly doesn't mind, but I am going to tell you a little about how we became such good friends...

We met in the kitchen one night at the Ronald McDonald House back In October 2002. I think we both scared each other actually, as we were scoping out the kitchen for a late night snack. I had had a horrible day with my son Jacob being in the PICU and so I began talking and talking to her. In fact, afterwards, I thought she probably thought I was some psycho! But we continued to see each other around the house and got to know each other a little better. When I left the middle of November, Holly and I exchanged emails and caringbridge sites. We began emailing and signing each others guestbooks. Soon it became a daily occurrence and before long, we were exchanging phone numbers.

Soon Jacob's 1st birthday came, and Holly and Maya made the trip for the big day. That was the first time she had met Jacob since he was in the hospital the whole time we stayed at RMH. It was also at this time, that Holly was going to many different clinics for Maya's care. We began talking about her moving here. I told her about all the benefits of moving here, with the biggest perk being close to me! If you had asked my husband, the biggest perk was probably lowering our phone bill!

Last February, Holly took the big step and moved away from all she had known, the comforts of home and family, a loving church, to do what she thought best for Maya. I know this wasn't easy for her. She missed home and there were adjustments to get used to. It shows me though just how strong she really is and how much she'd do for Maya's sake.

While some think what she does is heroic and they could never do what Holly has and is doing, she doesn't see herself that way. She is doing what she needs to for her daughter as her job as MOTHER entails her to do. I will say that she does do a pretty dang good job at it too! And while she will probably kill me for writing all of this, I think it needs to be said that Maya is truly lucky to have such a wonderful lady in her corner, fighting for her the best ways she knows how, with a strong focus on what's real and following her heart.

Our family has been so blessed to get to know "auntie" Holly and cute little Maya. The boys are spoiled rotten by her and oh Miss Maya is SO dear to my heart. Most people look a lifetime to find such a wonderful devoted friendship. I consider myself extremely lucky to have been given such a gift, which started one night around a counter of doughnuts....

Karla

Friday, February 18, 2005 3:28 PM CST

Check out the new pics!

Talked to Holly. Maya did fine through her scope. It looks like she may be transferred back to La Crosse as early as today.

I appreciate all the comments in the guestbook. I hope Holly doesn't mind, but I am going to tell you a little about how we became such good friends...

We met in the kitchen one night at the Ronald McDonald House back In October 2002. I think we both scared each other actually, as we were scoping out the kitchen for a late night snack. I had had a horrible day with my son
Karla

Click here and send a Christmas message to Maya!

Good evening. What a long day this was. Maya didn't go down for her port-a-cath placement until this afternoon and she wasn't back in the room until nearly 5pm. She is a little uncomfortable with the incisions, but is also running a little temp so she may just be irritable from that. She did a good job going to sleep again today adn they gave her quite a bit of versed so she'd be willing to go back for the surgery. She took one look at the surgeon and started giggling, "you look funny!" What a crazy little kid.

I think the plan is to re-start her feeds at 10cc/hr and then decide tomorrow if it is time to start pushing it back up. Her labs are staying where they need to be except for her calcium and phosphorus which we are playing with each day. There is some speculation due to the amout of output she has from her gastric port that maybe it has slipped down into the Jejunum or that she is refluxing from the small intestine back into the stomach. We'll see tomorrow if she needs to have some studies to see what is going on.

I heard from the wheelchair place today and they have officially denied her chair. Not sure what we are going to do as we've appealed it already. We may have to go for a manual chair which will mean she'll need help as she fatigues pretty easy when trying to propel herself.

Thanks for checking in.

Holly

Tuesday, December 7, 2004 1:55 PM CST

Finally some progress?!

Today was Maya's MRA. She did really well. They haven't told me the results yet, but she did great with the anesthesia and woke up like nothing had happened. They didn't try to even bring a mask into the picture until she was totally out of it and I just stood there and held here and we sang songs until she was asleep. Very smooth and easy.

She is back at feeds of 10cc/hr now. She was so uncomfortable with the 20cc/hr and was very bloated. Her g-tube is to a gravity drainage bag right now which helps with the nausea and keeping her tummy empty. The J-feeds are also making her bloated, but nothing like the others. They finally snipped the sutures on the button and were able to loosen it up so we could get gauze up under it. This really helped with the discomfort also.

Tomorrow will be the port-a-cath placement, which is a surgery, but should be fairly short. They are going to see how big a double would actually be and otherwise just go with the single. I think it will be a welcome change to having this PICC line in her arm and dealing with that all the time. Will also give us such a nice access in the future to get an IV into. I'm still not sure what the final verdict will be on the feedings and the TPN. I do know we will be able to feed at least some through the J-tube which is a great thing. I think we will eventually get to the full feeds, just might take some time and maybe she'll just need half and half.

She's puffy again today from the fluids. She always gets her fluids switched around in the OR which causes shifts in her fluid balance with electrolytes. She feels fine, just looks puffy through the face and in the hands.

she made a beautiful flower this morning with OT and a cute little reindeer bag. Tonight is Bingo again so she's excited about that too. It is the first time since we've been here she can go to the playroom to play and not just in her room. So nice to be off isolation. She's also found about 101 uses for those probe covers for the thermometers. She connects them end to end and builds things. What a recycler she's become.

Thanks for checking in. We appreciate it as always.

Holly

Sunday, December 5, 2004 10:14 AM CST

UPDATE: Monday December 6, 2004
The MRI today was changed until tomorrow due to some issues with the sedation and since she had received anesthesia on both Friday and Saturday last week. It should be tomorrow morning. Today we are changing all her meds to J-tube and IV and going to leave her g-tube to drainage at all times. Hopefully this will make her more comfortable. We are now feeding at 15cc/hr in her j-tube which is about 1/3 of where she needs to be. 15cc=a tablespoon. She got very bloated this morning and we had to give zofran and stop her feeds for awhile. She also had OT today so that was a nice change of pace for her.

***The Dora bike has been found! Everyone can sleep easy now. Thanks to the wonderful person who found it.

Maya is sleeping so I thought I'd take the opportunity to journal a bit without distraction. Last night she actually was able to keep her PICC line in. I'm not sure what was happening before with it falling out so frequently, but whatever it was, I pray we've fixed the problem. She is really sore from her PICC site today which is because of all the manipulation to put the new one in. They tried to feed it in the hole where the old one had been so they didn't mess with another vein. This one is a double lumen which means we basically have two IV's to work with. They have switched all her meds that can be to IV to try and give her tummy a break. Her new tube which is a G-J tube or a gastric-jejunostomy tube can be used to give feedings into the intestine (the J) and meds into the tummy where they are absorbed (the G). Most meds are made to be absorbed and broken down while in the tummy so it is important to have access to both. Now the big thing will be to get her port-a-cath in on Wednesday which will give us IV access though her chest and she won't need to be stuck so much. Her veins have taken a beating the past few months so it is getting harder and harder to get lines in. This port-a-cath is actually implanted under the skin and then when you are using it it is accessed with a needle which can be taped in place. The nice thing is if she is not needing IV's at the time it can be removed and she can swim or take a bath and not worry about it getting wet. I've been asked by a few people if she also has her cecostomy. The cecostomy or c-tube is still there. It goes into her cecum which is part of the large intestine and we use it to flush an electrolyte solution through to flush out her bowel. Much like an enema, but starts at the top. So that is the lowdown on her tubes. Right now we are running her formula at 10cc (2 teaspoons) an hour and she is receiving TPN (IV nutrition) through her PICC line. She also gets lipids (fats) though that too. The other lumen of her PICC is for fluids and medications. Right now she is still receiving bicarb IV to combat her frequent episodes of acidosis. Yesterday we had to cath her so another urine could be sent down to check for infection and she finally cleared the infection in her colon so she is out of isolation.

Tomorrow she will be going down for an MRI and MRA. She will receive anesthetic for this since she has to hold still so long. The MRA part of the scan is like an angeogram and looks more at the blood flow to the brain. They are concerned maybe there is a vascular reason for her strokes and they may not all be metabolic. If this is the case they could place her on a vasodialator to increase the bloodflow to the brain and maybe prevent them. Kind of a long shot, but worth looking into.

Maya and I had a suprise visit yesterday afternoon from Miss Karla and Jacob. It was nice to see them and visit for awhile. She also restocked my video/dvd supply for awhile. Maya likes to have the dvd player in bed with her while she plays as she can see it better and is able to focus on it. She's started to get very excited about her birthday and insists that she is getting a Dora bike. I'm hoping I can find a Dora bike. I'm not sure she can even ride one as she tend to tip her trike, but short of investing in a big trike which is sort of a special thing and pretty expensive this might fit the bill for a little while. She's mostly inside anyhow so she'd be messing with it there. Still not sure what I'll do about this, but it is so rare she actually wants something specific. She's not really said much about Christmas although she loves to listen to her Christmas CD's that Nana brought her. She likes to sing the songs and is trying to learn some new ones.

As we finish up what will make a total of 8 weeks in the hospital since school started this year it is hard to believe the year is almost over. It seems like just yesterday we started this journey. It sort of snowballed on us and while I often times feel we've been here forever othertime it is as if it just started. So much has happened and so much has changed. It will take awhile to establish all the new normals, yet I am confident that is all it will be, new normals. Each setback we have is just that, a setback. I can't let myself believe we won't then continue to move forward. In so many ways Maya has really progressed and changed through this very long fall. She trying so hard to speak in full sentences and use new words. She is helpful almost to a fault. In fact yesterday as they were prepping her for the anesthesia she put on her own electrodes (in the right places mind you) and hooked up her own pulse ox (the thing on the finger that lights up and tells the oxygen level and pulse rate). She was handed the mask too to place over her mouth, but she swiftly slipped it behind her back and tucked it under a pillow. She still wants nothing to do with that stinky, sleepy mask and lets all those around know she means buisness when she says she "can't want to wear that 'cary mask" She is still very much doing things as most 3-4 year olds, but making strides toward 6 each day. I know that many of the cognitive issues will not ever be where other kids are at, but she makes up for that in who she is. She is always so bright and cheery when someone knew comes in and "helps" with everything. The nurses joke they should just call in the door, "Maya, time for your vitals" and she would get them done herself. Maybe they can give her a job when this is all over, LOL.

Well, I've rambled on long enough. Maya is still sleeping and it is nearing 11am. Funny how any other time you'd just assume your child is tired, but in the world of a medically fragile kid you wonder what sleeping could mean..infection...low blood counts...pain. Of course it is most likely that she too is just tired. Thanks for taking the time to stop by and check on us and for keeping on reading thorugh this very long journal entry. We appreciate all the guestbook entries. Please if you've never signed before take the time to just sign in and let us know where your from and how you ended up here. I see we get many hits to the site and it would be fun to know who's out there reading. If you've signed before, thanks and we'd always love to hear from you again. If you're not into the guestbook either thats fine too.

Holly

Saturday, December 4, 2004 2:32 PM CST

Happy Saturday! Weekends around here are typically pretty boring. Maya of course can have none of that so we spent most of our norming down in interventional radiology. Last night we lost our brand new PICC line and had to have that put back in today. Also had to have some work done on her J-tube to make it into a G-J tube. This meant more anesthetic and all that goes along with it so it's been a long day. She's finally resting in bed watching Dora nad happy. Please pray this PICC line lasts until Wednesday when we can get a port a cath placed. She doesn't have much left in terms of access and it's become an issue to get peripheral lines in. With the central lines we can at least do blood draws and everything else through them. She is tolerating her J-tube feeds at 10cc/hr at this time and is still getting TPN (IV nutrition).

Yesterday when she went down to the OR for her biopsies (results should be back in the next day or two) she plugged her nose and held her breath so they couldn't give her anything through the mask. What a character! Hopefully tomorrow will be uneventful.

Holly

Friday, December 3, 2004 6:34 PM CST

We are finally back and settled in our room. Maya didn't go down for surgery until 1pm this afternoon and wasn't finished until after 4pm. She did really well although she is hoarse and has a sore throat from the breathing tube. She's been laying here watching her Dora DVD since we got back. She has a bit of a temp and some pain so she got a tylenol suppository and some meds for nausea through her IV. They ended up putting in just a J-tube and only a single lumen PICC so we have some figuring out to do ont he medications tonight. They are going to start her feedings at 5cc/hr and see how she does with those too. It's been a long tiring day. I'm ready for bed and so is Maya. Will update more tomorrow.

Holly

Thursday, December 2, 2004 1:29 PM CST

Friday am update!! Maya decided this morning wasn't going to be busy enough with her EGD and tube placements so she had a seizure this morning and her PICC line came out. This means when she goes to the OR this morning for the other things they will need to replace it. She can't get her port a cath placed until Wednesday of next week due to infection and some other issues we we have to go with yet another PICC for the time being. She's very sleepy this morning since that happened but seems comfortable. They are trying to get her bumped up on the priority for surgery so we don't have to deal with her getting hypoglycemic with no IV access. I'll update again this afternoon after her surgery

It's so cold today. I'm sitting here wrapped in a blanket and so is Maya. She always stays all warm and "cuddly" as she said in the bed, but since yesterday the OT brought in a little table and chair for her she won't get back into her bed! She loves it and will sit there until she litterally falls asleep in her chair with scissors in her hand. She is just such a strong kid. Doesn't let anything get her down. It was so nice having a visit from my mom. Maya loves her Nana and they had such a fun time playing. It was sad to see her leave today, but we'll be seeing her soon with Christmas coming. Speaking of Christmas we have a new CD-set with over 100 Christmas songs. I never knew there were so many songs, but it's been fun to have them playing all day. Maya also has a light up snowman that she likes on at night when she's falling asleep. it is hard to get in the Christmas mood when your in a hospital, but they do a good job around here. Yesterday she made a huge paper chain out of red and green and we ran it across one of the walls.

Today they sent more stool down so we can see if her c-diff cleared. She also received a unit of blood last night and we finally have her Hgb back up which I think has given her an extra burst of energy too. Tomorrow she will go down to the OR to have a G-J tube placed and then Monday to the port-a-cath with an MRI/MRA on Tuesday. With the J tubes they are going to start at 10cc/hr and then see where things go from there. Medically right now we can only wait to get the above things done and see how things go from there.

Our little buddy Carl was layed to rest yesterday. Please continue to keep his family in your prayers as I'm sure this next month and year are going to be very hard for them.
www.caringbridge.org/mn/carcar

Sitting here with the door open I see so many very sick kids go by..in wheelchairs, on carts, and in their mommy's arm and I realize how very lucky we really are. The doctor are very confident they can help Maya get through this crisis and feel that although what she is dealing with is very serious she is at a point we can still help her. Even though by the looks and sounds of things she is very sick and in all reality with out intervention and compaired the the "normals" she is sick. She is not in an immediate crisis nor is she in a place that nothing further can be done for her. We are just finding a new normal and getting her back home right now. Things are never going to return to the way they were, but we still have Maya to love and enjoy and share. Most likely she will still have to come to the hospital when we enter different crisis episodes, but hopefully each time it will better dealt with.

Thanks for checking in. We'd love to hear from you in our guestbook. It gets lonely around here sometimes.

Holly

Wednesday, December 1, 2004 8:42 PM CST

Today was a busy day. Last night Nana came to visit! Maya was so excited she was speechless and that doesn't happen very often. After she left for the hotel last night Maya's PICC line decided to clot off and we could not get it open even with TPA. So, now we are working with one lumen only and juggling her TPN, lipids and other meds. Tomorrow morning we are going to get a stool sent to see if her c-diff has cleared. If so maybe she'll be cut free from her isolation status.

Today's meeting went well. Maya was lucky enough to have Nana to play with during the meeting so she was thrilled. All of the main doctor's involved in Maya's care were there. They decided the only way we could treat her anemia right now is by giving her blood transfusions to bring the blood levels back up where they need to be. She'll get her transfusion tonight. The plan from here is to schedule the placement of a J-tube that will first be placed through her g-tube then if it proves to be a solution they will go ahead with placing a G-J. This will be done in interventional radiology while before they do this they will scope her to get biopsies and check out what is going on inside. They will then have to wait for 24 hours and then she will have a port-a-cath placed so we have some form of better IV access for the future. We will do slow J-feeds while she is on TPN and then decide if that is going to work or not. If not the next choice would be home TPN.

On Monday she will have her MRI/MRA as planned also and if we are out by the 10th she will follow up with everyone then. Nana is leaving tomorrow and I'm sure Maya will be pretty sad, hopefully there will be enough to keep her busy. I know I will miss her company too.

I hope this makes sense. I'm very tired tonight as last night was long and tonight is proving to be long too as they are just starting her blood now at 10pm. Will update again tomorrow as we should have some dates and times for things.

Holly

Tuesday, November 30, 2004 8:00 AM CST

Maya is feeling much better today and beginning to look like herself again. She is having less stools in volume (fun thought I know!) and her color and vitals are better. She remains on TPN and IV fluid along with slow g-feeds. She's pretty distended again today, but that is the norm anytime we go ahead and put things in her tummy. Second urine culture was clean yesterday so we will finish up her zosyn today. We'll have to send another stool in the morning for c-diff and decide if we can discontinue the flagyl. I'm thinking she'll remain on the IV erythromycin along with the zelnorm at home.

The plan now is to have a care conference on Wednesday afternoon with all of Maya's doctor's. Hopefully with this we can form some long term plan for her care and break free of this place. I'd really like to go home for more than 3 days this time. I know for sure that several of her doctor's are planning on coming.

This morning no one really had much new to say since they are having that meeting tomorrow. Either that or they just didn't tell me what thir plan was for the day. I know they are going to try to increase feeds again and decrease the fluids. We are planning on going home at the end of the week, but I'm not sure what they are planning :)

Maya had many visitors yesterday so the day went quickly. Her teacher and speech therapist from school came to visit and brought some fun things to do. Our pastor and his wife also came to visit as did the chaplin (who Maya adores because she will sit and cut with her). She had some wonderful mail from hugs and hope with the cutest Dora Christmas notepad. It must be special because she hasn't even tried to cut it up! Right now she is playing with all the paper her teachers brought her to cut up and filling up her Dora bag with all the scraps.

Nana is coming today so Maya will be happy to see her too.

Thanks for checking in on us and for signing the guestbook or sending e-mails/phone calls, etc. We appreciate all the support.

Holly
Holly

Monday, November 29, 2004 6:46 AM CST

Maya did pretty well yesterday and was busy painting, glueing, and cutting. She did continue to need zofran fairly frequently for nausea and had some issues with pain in her belly, but it was controlled pretty well. Most of the pain and nausea stemmed from the fact we were running her feeding at 12cc/hr. I talked to GI and they are in agreement that it is time to stop just putting baindaids on the problem and take the bigger step of finding something long term to deal with the problem. He had a couple of options including placing her on TPN (IV nutrition) at home. This would involve needing a central line and would still leave other options open if this didn't work out as they are more involved then TPN. From what I understand she will be finishing up her flagyl and zosyn this week (IV antibiotics) and then we will re-culture to make sure the infections have cleared. Sugery will need to come around today and take care of some granulation tissue which formed around her cecostomy tube. I think they are also having the doctor in charge of nutrition including TPN come around today to discuss long term care. Once again we are faced wiht the fact that Mayo does not like to discharge kids on TPN to home. Nephrology should be beginning to gather their results from the 24 hour urine and the blood work sometime in the next day or two. I'm not sure if we'll see them again before we leave or just in the clinic for follow up. Depending what they find she said they may need to change her topamax (seizure med) to something else.

I'm so glad today is Monday. Things should get back to a little more of the regular weekday schedule today. I never like the weekends here and this was like a four day weekend. Maya on the otherhand doesn't really care. As long as she can "help" the nurses and lab with everything she's happy. I'm not sure how much help she really is at time, but she is doing her own blood sugars including sticking her finger and she pushes her own meds and flushes. She likes to run all the clamps too which is when the "non-helpful" part enters in as she will clamp her IV's sometimes after they leave the rooms which sets of all the alarms on her IV pump. She thinks she's the queen of everything! If you could see her, you'd agree she's queenie--complete with the purple crown. I'll post a picture when we get home.

Please continue to keep Carl's family in your prayers this week as they prepare for his services. www.caringbridge.org/mn/carcar

Holly

Sunday, November 28, 2004 6:51 AM CST

Yesterday there were some decisions made in regards to Maya's treatment. The nephrologist and neurologist met and decided that the pieces don't really make sense in regards to her diagnosis and symptoms. Usually kids with a complex I defect are not experiencing as many issues as Maya does. They are doing several tests that are similar or the same as we had done two and a half years ago when Maya was first diagnosed. These are to see if she has a seondary or another primary disorder in addition to her complex I dx. She is currently in the midst of a 24 hour urine which means she has a catheter in and I'm sure I don't even need to follow that statement with--she hates it! They also ordered several blood tests and arterial blood gasses (also not on the list of fun things to do on a Saturday afternoon). Maya was started back on TPN and lipids yesterday also. She was not tolerating her feeds even when they were only running at 5cc/hr. She remains on both antibiotics, one for each infection. The one she will need for 10 days, but we can finish it at home. She's also going home on the IV erythromycin again. Yesterday it was discussed also changing one of her seizure meds. One of them is ok, but the other is complicating the way they look at things as it can cause some of the same issues we are dealing with so to take that factor out of the picture we'd need to change that med. For those of you with kids who have seizures you know this is never something you look forward to doing when you have decent seizure control with what your on.

Maya was quite crafty yesterday although she is still napping a couple times a day. she painted several pictures and colored a few more, Including one with Santa Claus which I had sworn I wouldn't be sitting in a room full of Santa's after having been in a room first full of pumpkins and then full of turkeys. Oh well, so much for that idea. I also brought some snow up to her and she played making a snow castle and a snowman which she colored with her markers. It eventually melted into a pinkish purple mess which was fine with Maya as she doesn't like to touch snow anyhow. Mostly I built and she colored things in.

Please continue to keep Carl's family in your prayers as they face the next days and weeks ahead without their precious little boy. As another caringbridge parent often says, "go and hug your kids" We are so blessed to be able to do so. You can visit Carl's site at www.caringbridge.org/mn/carcar.

Holly

Saturday, November 27, 2004 5:58 PM CST

UPDATE: It is with sadness that I post tonight. Our buddy Carl passed away last night in his Daddy's arms. He is now dancing with the angels in heaven. I ask that you all keep Kelly, Tom, and family in your prayers. We will miss you Carl!



It is snowing here today. Maya was so excited she must have kneeled by the window for nearly half an hour. She kept showing me how it was on the rooftops and the "Christmas trees" out front. It is still snowing steadily so I'm not sure what we are suppose to get for a total.

Last evening was not good for Maya. She seemed to have an increase in abdominal pain and nausea. We ended up stopping feeds and draining her tubes, held some of her meds for the night, and gave her zofran. She still was pretty miserable until she finally fell asleep around midnight. Today seems like a much better day. She took a shower this morning and is in bed playing already. This is the day for the residents to change rotation so she's got a whole bunch of new doctors who don't really know her which should prove to be interesting. Could go either way as they have to learn who she is and how she responds to pain, etc.

Yesterday she ended up seeing nephrology, neurology, and GI. They took more blood than usual this morning and need a U/A so I'm not sure what they ordered as far as tests. I can tell she's now on the mend though as finally today she is acting so much better. Still not clear on the long term plan for her care as far as continued IV meds, etc. She's back on erythromycin so I'm thinking she'll go home on at least that. Her HGB is up from 8.6 to 9.4 which is good although it was 11 on Tuesday so I'm not sure why it even dropped. I'm guessing we'll need to recheck her feritin again to see if this is just her iron deficiency showing up again. She's only been off iron for a short time, but she doesn't seem to hold onto it too well.

I'll update later if anyone has anything new to add today. Thanks for checking in on us.

Holly

Saturday, November 27, 2004 8:22 AM CST

UPDATE: It is with sadness that I post tonight. Our buddy Carl passed away last night in his Daddy's arms. He is now dancing with the angels. I ask that you all keep Kelly, Tom, and family in your prayers.



It is snowing here today. Maya was so excited she must have kneeled by the window for nearly half an hour. She kept showing me how it was on the rooftops and the "Christmas trees" out front. It is still snowing steadily so I'm not sure what we are suppose to get for a total.

Last evening was not good for Maya. She seemed to have an increase in abdominal pain and nausea. We ended up stopping feeds and draining her tubes, held some of her meds for the night, and gave her zofran. She still was pretty miserable until she finally fell asleep around midnight. Today seems like a much better day. She took a shower this morning and is in bed playing already. This is the day for the residents to change rotation so she's got a whole bunch of new doctors who don't really know her which should prove to be interesting. Could go either way as they have to learn who she is and how she responds to pain, etc.

Yesterday she ended up seeing nephrology, neurology, and GI. They took more blood than usual this morning and need a U/A so I'm not sure what they ordered as far as tests. I can tell she's now on the mend though as finally today she is acting so much better. Still not clear on the long term plan for her care as far as continued IV meds, etc. She's back on erythromycin so I'm thinking she'll go home on at least that. Her HGB is up from 8.6 to 9.4 which is good although it was 11 on Tuesday so I'm not sure why it even dropped. I'm guessing we'll need to recheck her feritin again to see if this is just her iron deficiency showing up again. She's only been off iron for a short time, but she doesn't seem to hold onto it too well.

I'll update later if anyone has anything new to add today. Thanks for checking in on us.

Holly

Friday, November 26, 2004 7:52 AM CST

UPDATE!!
We now have a new plan. Back on IV erythromycin and on her zelnorm then start slow g-tube feeds to see how things go. Zofran is ever 6 hours so we can keep meds in with little nausea too. She is in a cutting frenzy so I know she's on the rebound. I also told them this PICC is out by the 12th because she wants to go swimming for her birthday. If we get the infection clear maybe we can get something else in by then.

I woke up at 4:30 had the fleeting thought of getting up at 4:30 and going shopping. Then I rolled over and went back to sleep. Sleep is more valuable right now then any bargain I might find.

We've seen some of the docs this morning and they are talking about sending her home soon. I think we will go home with a PICC and IV antibiotics. We are going to start feedings today and it will most likely take a few days to get the feedings up to speed.

No one has any new thoughts on the feedings or her need for zofran so frequently. Basically I'm being told, "this is the way it is going to be" We haven't seen consult people yet so maybe that will change. We should see nephrology, neurology, and GI yet this morning.

I'll update later if things change, but it looks like we will just being doing antibiotics today and then making a plan from there. Someone jokingly said "you'll be home by Christmas" I just stared at him. Some things just aren't funny. We have a birthday to celebrate in just two weeks so Maya needs to get out of here and enjoy that.

Holly

Thursday, November 25, 2004 12:38 AM CST

Happy Thanksgiving from Rochester! Maya was sent up to Mayo last evening as we could not keep an IV going yesterday. Yesterday was better in that she was awake more although slept much of the day. She went down early today to have a PICC placed again, this time in her left arm. She wasn't too happy with me when it was all over. She'll be happier when she realizes she won't be stuck for her labs anymore. She's still pretty sleepy and is not tolerating her meds much at all. It is nearly 1pm and we are still trying to get her 8am meds in her. I think she's due for her zofran soon which should help matters some. Yesterday her potassium was low so she's still getting that IV along with an antibiotic for her UTI and one for the c-diff she has in her stools. I was told tomorrow we'll see GI and see if there is anything further to do in regards to her tummy. Not sure if they'll discussing doing a j-tube again or not. I'm hoping in the very least when these infections clear up we can get some sort of access established for more long term use for IV's.

I once again have to thank Karla for keeping my journal updated and taking care of Pookie so I can spend my time caring for Maya. I'm so blessed to have wonderful friends and family who provide so much support at times like these. Since it is Thanksgiving and a time to really look at how blessed we truely are I was thinking today that God has really provided for us so richly with the people who come into our lives. Maya has such wonderful caring doctor's who really do care about her and we have so many other wonderful people in our lives both through church and friends we've met through various activities. I am so thankful for all these people and the opportunity to raise this wonderful little girl of mine. She is such a brave, cheerful kid with so much to share with the rest of the world. I've truely been blessed by having her a part of my life.

Thanks for checking in on us and I'll update tomorrow as I know more.

Holly

Tuesday, November 23, 2004 4:45 PM CST

UPDATE:
The urine culture grew bacteria, so it looks like she has a UTI. Her hemoglobin is low, her potassium is low, and she was very acidotic and dehydrated. I went to see her last night, and she slept the whole time I was there. She was very pale and seemed to have a scowl on her face. Hopefully the antibiotics will start kicking in and she'll feel better soon!



Hello everyone....it's me Karla. And I am sure you know what that means :( Maya is back in the hospital with a high temp, dehydration, acidotic, very lethargic, high heartrate, and a high white count which means she has infection somewhere.
She is in La Crosse for now and may be transferred to Mayo if the doctors there think it's best. Right now she is on triple antibiotics, has blood and urine cultured, and had a chest and abdominal x-ray.

Please keep both Holly and Maya in your thoughts and prayers. Maya looks so sick...you'd never guess that the picture at the top was taken just a few short hours before her fever spiked :(

If you want to contact Holly, the number is at the bottom.

Karla

Monday, November 22, 2004 8:03 PM CST

Today's appointment went well. We were a little early due to a time mix up from what we'd been told but we did get to see the doctor. She said that she was concerned over the focal episode Maya had on Saturday night and the residual weakness. After about 36 hours most of the weakness is gone and she just has some minor weakness that you can't see too easily. The concern is the total loss she did have as usually it is just weakness and not quite so involved as this time. Ultimately we don't really know what happened. Last night was good and she slept all night so maybe that was the end of it. Everything else checked out well and we are back to flushing her c-tube out each evening. Tomorrow the Zelnorm should be in and we can start that up.

Maya will go back to school tomorrow for a few hours and then of course it is the holiday. She is looking forward to going, but is having trouble falling asleep tonight so I hope she gets enough rest.

We continue on 24 hour feeds and have not been able to add back meds that were on hold yet. Most of them are still there but some of her cocktail is on hold. Not much more exciting going on here. Thanks for checking in.

Holly

Sunday, November 21, 2004 3:30 PM CST

We are officially at home. I was not so sure we'd say here during the night as Maya has started having a lot of issues with her right arm. She is doing better then during the night, but still can not put any weight on the arm or lift it over her head. She is able to manipulate the fingers and use it that way though so I'm not sure what to make of it. She woke up at 1:30 screaming it hurt. She couldn't tell me what hurt, but when she sat up her arm hung limply at her side. She wasn't too coherent at the time, but neuro wise seemed fairly normal for her. She wasn't using the arm at all though. I gave her motrin and she calmed after an hour or so and finally fell back asleep. She ended up sleeping until noon even when I gave meds this morning. She woke up in good spirits, but with some weakness in the arm and in her grip. She's playful so I'll just wait to see what the pediatrician says tomorrow. This was night number four that this happened so I suppose they'll need to check it out a little more. I was thinking maybe it was some sort of seizure, but she has so much pain I'm not convinced it is even neurologic. Guess that is what doctors are for. My mommy assessment skills can't always compete with lot of schooling although it can some in a close second and at time even beat them out.

Spirits are good here. She is not tolerating meds to well so I'm experimenting with her feeding around the med times and staying on 24 hour feeds at this point. Maya and I watched Edward Scissorhands today and when she saw him cutting bushes into animals she told me she'd like to do that someday too with her scissors. She also liked when he did the dogs hair and got a good laugh out of the scene where he was cutting people by accident with his scissor hands. She wanted her scissors afterwards, but told me she'd play doctor first. She's got a baby I made with a g-tube and IV so she likes to play with her. She is a little on the scarey as a doctor though as she likes to put on the surgery hat and gloves and hold the anesthesia mask over the baby's face and say her, "you can't like that? Oh well!" then she giggles madly for awhile before removing the mask and hugging her. I'm hoping that is not what she thinks we are doing when she has to go in for surgery. Her favorite part is doing the baby's IV though.

Not too much else here. I'll update tomorrow after we see the doctor as hopefully we'll know more about her arm.

Holly

Saturday, November 20, 2004 8:33 AM CST

Good morning everyone! We are going home! It's hard to believe another two weeks has passed here at club med. We did cut a week off our visit this time so that wasn't too bad.

Last night Maya's PICC line started to drain some yucky looking stuff so they had to culture it and take it out. This was fine by us since she really hated having it in. She was close to being done with her TPN anyhow and was up to nearly full feeds so we are going to make a go of it. Of course we now will have to go with the zelnorm vs the IV erythromycin, but that is ok too as this was what we were leaning toward. Maya is so happy to have two hands back she painted about 10 pictures last night.

Maya also had a visitor last night. One of her doctor's brought his daughter in to play with her. He has been one of her favorites and she loves playing with her. We all played a couple rousing games of Candyland and there was lots of little girl giggles in the room. She's missed having a playmate as she's been in isolation this entire time.

Right now the plan is to go home today and follow up on Monday with the doctor at home. We'll have to come here the following week for follow ups with GI, genetics, and neurology along with PM&R (rehab). Somewhere in there we see nephrology (kidney) and urology too. Hopefully the weather with cooperate with all our driving plans up here as winter is slowly creeping in.

Things are moving slowly. We aren't really back to Maya's normal yet so I'm not sure how our next week will go as far a geting back into the normal swing of what we do. I think it will take a lot of tweaking and juggling to try to fit in some of her meds we cut out for the short term and as we work trying to get her fully comfortable again.

Thanks for checking in.

Holly

Friday, November 19, 2004 12:06 AM CST

Rounds were done early today. Maya is not going home yet. They were not able to increase feeds yesterday as planned due to bloating and pain. Today we are trying again. The plan of attack if this does not work is to try a J-tube in addition so the g-tube can be there for meds and venting and the J-tube for feedings. We'll see how that turns out. She is still on the TPN (IV nutrition), but hopefully coming off tomorrow. IT is hard on the liver, etc so we are trying to get rid of it as soon as we can. She is again third spacing or pushing the fluid into her other tissues so she's puffy today. They discontinued the other IV she had in hopes of maybe decreasing the fluid load. We will be starting zelnorm some time next week in hopes of boosting what motility she has left too.

Last night Maya woke up yet again unable to move her right arm, this was the 4th time now it has happened. I'm hoping it is all related to the PICC and there isn't any remaining issues or damage after it is removed. We will definately go with a port-a-cath next time. In all reality, this is not the last time we will deal with similar issues. As nice as it might seem to think we've fixed a problem we've just adjusted and accomodated the problem. She is living with a little more discomfort and a whole lot more intervention in hopes that we have several good months ahead without a hospital stay. This isn't to say she is getting worse overall either and we don't want to sound defeated because we aren't, but it is also important to be realistic. What she is dealing with is a chronic disease and there will be times of flare ups or mito days and there will be lots of good days too where life goes back to our "normal". Maya on the other hand is continuing as if not much has changed. She cuts, glues, and plays doctor just as she always has and really doesn't even say much about being in the hospital. She knows that each day there are people who will come play or bring her stuff to do and that when it is "dark out" she will turn off the TV and turn the radio on to go to sleep. Many people have asked how this affects her or if she's upset, but really hospitals have become so much a part of her this is just part of life and she accomodates to it. She has a routine she follows daily in how she plays, where she keeps things in her try table and what channel the TV should be on at certian time (and she does not share the TV either!) She never asks to eat anymore and I really think she's learning to listen to her body a little more. I think once she's home she may decide to try a little by mouth, but we aren't pushing as it seems to cause her more pain and bloating.

Last night she played bingo from our room (Sorry Michael!) and since she is in contact isolations he had to play with a card wrapped in plastic. She did win once and won a little set of duplo lego's that she loves. They are called Zooters. If anyone sees them at a store please let me know. I've never seen them before. She has a red set and it looks like they make two sets. Our room is currently full of turkey projects just as a few weeks ago it was full of pumpkin projects. I'm just praying we don't end up in a room full of Santa projects next time around as this is becoming a bad habit (the hospital, not the art work).

On a discouraging note Maya's wheelchair was denied by our insurance saying since she is able to walk they won't let her have one. We don't dispute she can walk, but the amout of fatigue she is having is ever increasing and we've seen over the past several months how much better she does overall with muscle weakness, pain, and fatigue when she uses her stroller chair to get from place to place and saves her energy for actual playing which is what is really important in for her right now. The doctor is appealing this decision so please direct your prayers that way so that we can get this much needed piece of equiptment. Everyone here is in agreement this is something she really needs at this point.

Holly

Thanks for checking on us.

Holly

Thursday, November 18, 2004 2:21 PM CST

Last night Maya woke up crying about her PICC twice. She has it a place in her arm that makes her cramp up and she can't straighten out her arms sometime. Anyhow, we gave some tylenol and she was able to go back to sleep after about an hour. The plan is to discontinue her PICC on discharge and if she needs to come back in much more for similar issues we'll go ahead and place a port-a-cath. I'd prefer not to do anything at this point until we see if this is going to be a continuing problem. She is finishing up her antibiotic now and just on 1/2 mainenance of TPN. Her feedings are up to 35cc/hr and we need 40cc/hr before she can go home, but she's struggling with 35 so we'll see where things end up. If all goes well we may get to go home tomorrow or Saturday. We then have to start the process of getting her back on her meds that they stopped as part of her mito cocktail. The one she really shouldn't be off of at all, but it has quite a load and volume (70cc/day, or more than 2 oz). I guess we'll have to see how we get this back on board.

Today she's made a couple of neat turkey's and is playing wiht playdough now. When I was getting her ready for bed last night old Maya Scissorhands had cut a huge hole in her shirt and I'm pretty sure she didn't know she had even done it! I took a picture, if it turns out I'll post it as it's pretty funny and she's surrounded by mounds of cut paper. She's really doing well with her ifne motor skills with all this time in bed and is quite ambidextorous as well. She really has lost her left handed preference.

Thanks for checking in, hopefully tomorrow's note will say--GOING HOME!!

Holly

Wednesday, November 17, 2004 10:04 AM CST

Hi, It's me, Maya again. My mom needed a break from her 'puter so I figured I'd do the writing today. I am feeling pretty good again. They are diluting my formula with water and running it slower so I am doing much better with it. No tummy aches all night long! I just get pukey with my meds, but manage to keep them down. Today they are going to try to get my formula up to full strength and see how I do. Hopefully I won't start pooping again like I was, that can wear a girl out! Tomorrow if all goes well today they are going to turn my tubie up to 40cc/hr which would be where I need to be to get all my calories and fluid without an IV. Right now I am getting half of what I need through my IV for food (TPN) and half in my tubie. We have started venting my tubie on a regular schedule which helps lots too. This gets all the gas out of my tummy. My tummy likes to make lots of air because it doesn't move well and the bacteria are having a party in there. I also have had some third spacing with my fluids so they are tweaking things here and there to keep everything where it needs to be. Right now I am also not getting all my medicine which will need to be added back before I can escape Club Med so as the doctor said, I'm not free yet. At least I am getting closer to going home. Yipee!

Yesterday my buddy Jake came to see me and his mom Miss Karla. I was not quite feeling myself so I spent a lot of time just spacing out. I did get to do some cutting with Miss Karla. Cutting is my favorite thing to do although they brought me some wrapping paper and tape and I have been wrapping things a lot too. That is pretty fun, but no one in the world has enough tape to kee me in service. I am offering holiday services both in gift wrapping and then as we move on to the New year holiday I'll be starting by confetti production again. I think I might be able to bring in a little extra cash for my "gimme getme" fund. You know the one you use at Toy's R Us when you keep saying Give me that and get me one of those?

I still miss my Pookie, I know he has fun a Jakey's but I ask my mama everyday where Pookie is and at bedtime say I miss him since he helps tuck me in at home. My mama laughs and say she has shared custody of the cat with Miss Karla.

Well, I really need to get my scissors and cut some paper up. Thanks for checking on me.

Maya

Tuesday, November 16, 2004 8:13 AM CST

First off, I'm becoming highly addicted to high speed internet access and am spoiled in that way when I'm here. On the other hand I would gladly trade that for my own bed and own home again.

Last night was a long, difficult night for Maya. We started her on 1/4 strength Peptamin Jr. yesterday around noon and she did fairly well. She continues to have episodes of pain and discomfort and is napping two or three times a day now. We did get her up to 1/2 strength, but have had to hold it for an hour here and there to get her through. The other thing is her belly discomfort continually increasing the more we put in her tummy. The docs just came in and agree it is a motility/volume issue and we are going to back down the feeds for awhile to see how things go while she is still on the TPN. Fluid volume is an issue also as she gained 3lbs overnight Sunday night and it was mostly fluid I'm sure. Not sure were she is today on the weight issue as they haven't brought hte scale in yet. I tried to slip in that we were going home tomorrow, but no one bought into it, OH WELL, it was worth a try anyhow. The doctor answered me with, "if a day was a week, then maybe you are right." I think this means we aren't ready to go home yet. We are again discussing using a j-tube and maybe zelnorm to help things along, but since they feel her motility is pretty much shot throughout the entire GI tract I'm not sure trying another tube lower down is going to help matters. Zelnorm on the other hand has shown promise in others with motility issues. Her blood pressures are finally staying up, but her pulse rate isn't going down. Again, this is most likely autonomic dysfunction, but we can't rule out it isn't part of the fluid issues. It isn't bad enough to treat, just something we are keeping an eye on.

On to the fun stuff. Maya made it down to the playroom twice yesterday. She made a picture frame with shells and then last night painted with puffy paints. I must say she should be developing stronger fine motor skills with all this art work she is doing. Our room is filled with her creations. Right now she is playing doctor. They set her up with all the right tools and lots of fun doctor supplies so she is giving her bear a full work-up. From what I hear his belly hurts. Interesting.....hmmmm.

Thanks for checking in on us today.

Holly

Monday, November 15, 2004 7:22 AM CST

The weekend is finally over! You most likely only read that as relief if you've ever spent much time in the hospital. Time goes very slowly over the weekend as there is not as much going on and not much support staff to stop by and help pass the time. This weekend was slower than others too as there was no child life staff either. Maya has been doing lots of painting and make a turkey yesterday out of paper so she did pass the time with her artwork.

The current plan is to start weaning the TPN and back onto formula. We are going to switch to an elemental formula in hopes this will help her motility and maybe prevent some of the other issues she was having. I think GI is going to come again today and see what other input they have as to how to prevent such frequent and long hospital stays. They are all trying to put their heads together to see if we are missing something in managing what is going on with her. She continues to not run a temp which is a great sign and is tolerating pedialyte at 40cc/hr. We are using tordol for pain now in an attempt to stay off narcotics.

I'll update if things change after rounds are finished. Otherwise have a great day and we'll update tomorrow.

Holly

Saturday, November 13, 2004 10:02 PM CST

Yesterday I had a good talk with one of Maya's main doctor's. He was talking about how much she has taught some of the medical residents this past week. He called Maya a "silent fighter". He said that although she can may be painting or playing with her toys she can still be in the midst of battling pain or illness. It is so validating to hear someone sees what I so often see. Maya does not give into her body often. She will fight and persevere through so much without even saying so much as a word. She is willing to cooperate with the doctor's even if she knows that she's going to get an owie out of the deal and is very quick to forgive when it is all over. It's not saying she never cries or tries to avoid things, but she just takes each day in stride and tries to put a smile on her face no matter what. I've seen her so many times this year try and try to keep up with what she knows she is 'suppose' to be doing only to finally be overcome by her body's limitations. It is hard to watch your little girl struggle like that, but to know she is such a fighter makes me proud. She endures more than most people ever will in their entire life and never once complains about it.

Friday was a pretty good day for her. She was able to stay awake most of the day painting and playing. In the afternoon they had some musicians from Texas come and do some children's songs. They came to her door as she was in isolation and played the guitar and sang to her which she loved. Take a look at www.hugworks.org to read more about them. They sing all over the country to kids with special emotional and medical needs. Today was a little harder on her. I can tell she is feeling so much better, but still struggling with tummy issues. We started back on pedialyte today in hopes of progresing back to her g-tube feeds in the next day or so. It looks like we'll switch to an elemental formula this time around to save her body the work of digesting the foromula first. Hopefully this will provide her with some relief. Today was day 6 of 10 on her IV antibiotics, but I'm not sure if we will finish those here or at home, I think it depends how her feedings progress. The last thing I want to do is go home and come back again. On a brighter note Maya is out of isolation so she got to leave the room for the first time today. We walked down the hall and she played with some friends we met in Cleveland last year at the Ronald McDonald House there.

Tomorrow we'll talk with the doctor's again and hopefully get a better idea of how they think things are going. I know they weighed her again today and she has lost some weight so I'm not sure if they will try to make that up as well. Thanks to everyone for the notes in the guestbook, they really do brighten my day and lift my spirits each time I read them.

Holly

Friday, November 12, 2004 11:55 AM CST

Maya is feeling so much better today. I think we are finally on the road to recovery. She has not needed any morphine at all today and no zofran either. If things continue they will start pedialyte tomorrow and progress from there based on her stools and nausea. We are setting a goal of getting her back on 24 hour feed if able without a reoccurance of fever, bloating, nausea, or pain. It is a wait and see situation now. She will continue on the TPN and then wean the TPN off as feeds increase. She is also still in isolation, but seems to be tolerating it ok. She threw a few beads at me today so she must be feeling somewhat better.

She's up playing in bed and cutting away with her scissors today and also beading bracelets like crazy. Yesterday was painting. She is quite the artist when given the tools.

She was so excited to receive a pillowcase from all her friends at school. They made pillowcases as part of a school project and made her one too. She also got a box of beautiful "maya" cards which she likes very much.

Hope all is well. Please keep our friend Carl in your prayers this week as he enters a new phase in his fight against neuroblastoma. www.caringbridge.org/mn/carcar .

Holly

Thursday, November 11, 2004 2:11 PM CST

Maya is starting to show more progress toward healing. She no longer is running temps of any kind and her blood pressure is no longer so low. Her heart rate is also back down in the 120's which is normal for her. I do know that although the temps were not as high these issues had been going on since our discharge a couple weeks ago so I suspect some of this was brewing at that time. The CT this morning just showed inflamation again and no leaks which is good. The current theory is that when she developed the loose stools if from a virus or from an infection of some sort this stool was able to leak into the abdomen through the edges of her stoma and cause all of this inflamation. This is what in turn caused the cellulitis, colitis, and perotinitis or whichever parts of those she did have. Of course this really means nothing as she is receiving supportive care just as she would have no matter which of those issues caused the problems. The is on three big time antibiotics in her IV and then the erythromycin for motility. She is also on TPN and lipids for nutrition and the liver is tolerating this. The hope is to wean her back onto formula at some point and be able to get off the TPN again. it also looks as though this could be a long term issue on and off as they are calling the motility issues chronic intestinal pseudo-obstruction. She essentially has this coming and going depending on the state of her mito and how it is effecting her bodys energy usage at the same time. Today the doctor said that she has bad days and really bad days as far as that goes then the occasional good day. If this is the continuing trend and it looks like she will need TPN more often then she'll most likely get a different type of central access then she has with the PICC. The concern with this is the risk of infection that goes along with central lines. We will wait and see how things go as cold and flu season approach and go into full swing as this will affect her metabolically as she tries to fight these viruses. She did get her flu shot this year so hopefully that will help.

If things change later this afternoon (as they often do) the story could change again, but as for now we are continuing supportive care and going from there. She is still using the morphine for her pain, but is making it about 4 hours between doses now. She also continues using zofran for nausea. She did feel up to painting yesterday and did some watercolors that now grace our walls and brighten up the room. The doctor's call her their "Artist in Residence"

Holly

Wednesday, November 10, 2004 2:09 PM CST

We finally have seen all the doctors at least once for the day. They said they are happy with the fact she is not running fevers over 101 anymore and that she is responding to the antibiotics. She continues to need morphine for her pain and zofran for her nausea, but this seems to be doing the trick at this point. Right now she's in bed cutting paper and gluing it to paper. It is about the 3rd glue stick she's gone through today and who knows how many sheets of paper. She's happy with her projects though and since she can't leave the room we are just letting her craft away in between naps.

Last night one of the lumen of her PICC line clotted off. They tried to TPA it which means they put in some medication to disolve the clot then wait and pull it back out again. It didn't work so they are trying again right now and if this doesn't work she'll need a new PICC line. I just talked to the GI doctor also and he is thinking she has peritonitis and not colitis. He said whichever it is we are treating it correctly, but we need to know what caused the problem so we can prevent it from reoccuring. They just pulled out the TPA and the line is now usable so she won't need a new PICC line! On the flip side she just had a bout of pain and diarrhea again so we are getting her medicated and comfortable again. Tomorrow she'll have another CT with contrast through her cecostomy tube. Hopefully this will determine if she has a leak somewhere.

Today our friends from Spain dropped by. They are here for follow up visits and we had met them two years ago at the Ronald McDonald House when we were staying there. It is always fun to meet up and talk again with friends. With caringbridge sometimes it is as though you have been seeing them all along as you know the steps in their journey and how things have been going. Caringbridge has been such a wonderful support for us in that way. A way to meet and stay in touch with others going through some of the same things and a whole world of different things.

Thats all we know so far today. Her CT is in the morning so we'll know more after talking to the docs after that. I still don't have access to my e-mail except on occasion when this computer will actually let me on. Hopefully it is the aol server and not this computer so it will kick in soon.

Maya received a packet of cards from her class at Viking. She was so thrilled to see they were all purple. The packet also had cards from her therapist and other teachers involved with her at school. She has been looking through them all day and having me read them over and over to her. She misses her class and her school so much.

Holly

Tuesday, November 9, 2004 2:12 PM CST

Non-medical update! I have a laptop now so I do have computer access. Right now I am not able to access my e-mail, but can get to my guestbook. I will update in the morning, nothing has changed since this afternoon.

I finally got to slip away for a minute and thought I'd update real quick. After this it will be Karla again. Thanks Karla for being so helpful, Pookie and Maya thank you too!

Maya is continuing to have pain and needing morphine to keep it under control. She is now on another IV antibiotic in addition to what she had before just hoping to cover whatever the source of infection is. They are thinking there are two infections going on. One is at her c-tube site and inside of that area of the bowel and the other is in the left colon. Until we get cultures back they won't know exactly what to treat it with. When we can keep her pain and nausea under control she'll sit up and play with her craft stuff, but then she will go back to sleep or watch TV for awhile. She remains in contact isolation so everyone she sees is in gowns and gloves as they aren't sure what they are dealing with and don't want to spread it if it is infectious. She continues to deal with diarhea which due to the quantity makes her blood pressure go down so they replace the amount of fluid lost ounce for ounce in addition to her other fluids. They will start TPN again today with lipids to get some nutrition going and then give things a few days to settle before they reevaluate and decide if we can go home or if something further needs to be done. Temps are down in the 100 range now so that is a good sign. Right now we are watching and waiting.

Thanks for checking in on us and for the prayers.

Holly

Monday, November 8, 2004 2:35 PM CST

Hello everyone! I talked to Holly today and Maya had a bad night. She was having lots of pain, so they gave her some morphine. She is also on 4 antibiotics now as well. The CT scan showed inflammation in her colon. She will have a full abdominal CT with contast today to check into the issue further. She continues to run a fever, but it has come down some from what it was. She is on contact isolation right now until they can figure out what is going on. Please keep both of them in your thoughts and prayers!

Karla

Sunday, November 7, 2004 8:45 AM CST

Hi everyone! This is Karla. We had a wonderful day yesterday, going to McDonald's and to The Incredibles. Maya seemed to be enjoying herself, but then started getting tired and saying her tummy hurt. By the time they got home, Maya was not feeling good at all and had a high temp. Holly took her into the ER and they transported her to St. Mary's. They are unsure of exactly what is going on now. She will have a CT and a test to check her new C-tube this morning. Please keep them in your prayers!

Karla

Thursday, November 4, 2004 4:21 PM CST

Today I got to go back to school! I only went for 2 hours and was so very tired when I got home, but I had lots of fun. I got to see my teachers and my friendses. I used glue today too, it got all over my hands which I don't really like at all, but I washed them so it was better then. I'm still talking about that glue though, the whole experience is STUCK in my mind...get it? stuck?!

Yesterday my mom thought my new tubie came out again, but it was just really loose. She talked to the nurse at Mayo and she said I'm just so tiny it might not stay in very well. We go back to see them on Wednesday so they should know more then. Because it is so loose they want gauze kept on it, but this makes it grow granulation tissue which bleeds and is owie. I don't like it when my mama has to clean it, but I suppose she knows what she is doing.

Monday I had started using my IV for the medicine that is helping make my tummy work faster. I don't mind it and it is like a little ball I carry around with me when I'm hooked up. I have been a good girl and not messed with my PICC line (too much!) Oh, I wasn't such a good girl yesterday though when I took my purple crayon and designed a new pillow case.........who knew you were not suppose to write on things other than paper! I also made some neat confetti with some of my Mama's bills! I was just trying to help out, but apparently you are suppose to pay those and mail them back. They are much pretty this way though!

As you can tell I'm up to my old antics although I still am not 100eeling good or myself yet. I get tired really easy and will only eat a few bites of food each day. I have decided I'm on strike from drinking no matter what you offer although I will quickly tell you I'm thirsty or hungry if you ask, I just don't feel so good when I actually get something in my tummy so I'd rather just look at it.

Pookie has been following me around because he knows I keep my formula in my backpack. I wear my feeding pump on my back so I can still move around the house and go out. Pookie loves formula and when Mama fills my bag up he gets to lick the cans when they are empty. What he would really like is to have a whole can to himself. One night he even bit the bag the formula is in just to get more for himself.......he is such a silly cat. I love my Pookie.

Well, I need to get back to my super Dora marathon. You can never get enough Dora! Thanks for checking on me and my mom and for the prayers and thoughts so many of you send our way.

Maya

Monday, November 1, 2004 8:32 PM CST

Monday, November 1, 2004 4:52 PM CST
I can't believe it is already November.......where did October go? Things are pretty busy here with just the everyday care Maya is requiring at this point. She is still getting meds every couple of hours during the day and is on IV antibiotics twice a day in addition to g-tube feeds continuously. We continue to have some issues with the new c-tube and it almost came out again last night. I'm keeping a dressing on it in hopes of it staying in, but this in turn has caused an increase in drainage and granulation tissue so I feel like we are in a no win situation right now. I talked to the nurse today and she said that maybe it is because Maya is so small, but doesn't know for sure why this is happening. We return to see the surgeon on the 10th so we'll see how things go until then. I know they are going to have to use silver nitrate to burn off the granulation tissue, but not sure if anything else will change. As far as the purpose of the tube it is doing it's job and irrigates nicely so at least we've fixed one major problem with all of this.

Yesterday we went to church and took the kids to the mall in their costumes. There are pictures of Maya on the photo page along with some from the hospital and in the leaves. I think it was good for Maya to get out of the house for a little bit as she is use to being more "on the go" then we have been as we're pretty tied down to home with all the stuff currently going on.

Today I made a bunch of calls trying to sort out some issues and find a way to get some assistance with some things we need. Many of the things in her mito cocktail are not covered along with some other recommended items so it is always a challenge to find the resources for these things. It's good to know God always comes through in the right timing, but often so hard just to trust him and have faith it will actually happen. Much the same way I have to trust and have faith that I'm doing the best I can for Maya right now and she's getting all the care she needs. With this disease there are never any pat answers.

Thanks for checking in on us!

Holly

Friday, October 29, 2004 9:25 AM CDT

Hi everyone, I thought I'd give my Mama a break today and do the journal Maya style. I am so happy to be home, of course my first day home wasn't really spent here, but at The Mayo. Yesterday was a better day. I spent most of the time laying on my Mama's bed watching TV. I wanted to play, but didn't feel like it much, besides I had a lot of movies to catch up on. I did play with my stuffs and all my syringe caps I brought home from the hopistals. I like to move them from bag to purse and then into a plastic container. I had to carry my backpack with me everywhere I went in the house since my tummy tube is getting food all the time. I did eat a few goldfish crackers too, but I'm not real into eating anymore. My other tubie is working pretty good too. Every day at 5pm my Mama puts lot of this special medicine through it and it cleans out my tummy for me. I feel so much better now. Most of the time I have to take my medicinen every time I turn around. My tummy doesn't like to take much each time so Mama spreads them out over the day and we start at 7:30 and aren't done until about 10pm. I'm sleeping by then, but I know she comes in and squirts them in my tubie. Last night I didn't sleep very good again and was crying a lot, but settled down early this morning. Mama thinks maybe my tummy is hurting since I curl in a ball, but I can't tell her what is wrong. Sometimes I can't find words to say what I want to.

I have to tell you about this so very cool doll my Mama made me. She put a mickey tubie in her and an IV like mine in her arm. She put another tube in her belly too like I have. I play with her all the time and give her her medicinen. In case you ever see me with her, she does NOT HAVE A NAME. I thought everyone was so funny at the hospital asking me what everythings name was. I just mumbled at them hoping they would quit asking. Unless it is my Dora doll nothing has a name I like to name things like they are, black kitty, baby, grey kitty, yellow cow, black and white dog..........well you get the idea.

Oh, I know my Mama already said this, but Thank You, Thank You to everyone who made our stay at The Mayo better through phone calls, notes, etc. We felt so loved by each of you. Well, Mama said it is time for more of my meds so I'd better go let her do them. It's time for my blood sugar too so at least I'll get a Dora bandaid out of the deal!

Maya

Thursday, October 28, 2004 7:19 AM CDT

Good morning. Yesterday was an eventful day as we started our morning with a visit from the home care nurse to bring out the flushes for her PICC line and do the teaching to give them. I actually had this in the hospital, but they require it from home care too. While she was here doing the admission Maya's c-tube came out. I'm not sure how it happened as I was told when it was placed they rarely come out. The current thought is that the stitch that was holding it came out and migrated into the colon and then pushed the tube out or it got pulled hard, but I was there and I didn't see anything happen and she didn't even seem to notice. It is a very long tube compaired to a g-tube. Regardless, it came out so we were told to go to the ER up at Mayo. Nothing like another trip up there. When we got there they told me that they usually replace them in the OR or interventional radiology under sedation. The problem is that I hadn't thought to disconnect her tube feeding so with her delayed empty we couldn't take the chance of giving anesthetic with her tummy full. The origional plan was to wait until 7pm and then take her to have it replaced. They then decided by then they may lose the tract where the tube goes through so they had no choice, but to try to place it under light sedation in radiology. The childlife staff was wonderful once again. She put on the gear went back with her for the proceedure to do distraction and got Maya through with flying colors. We got home later last evening and are glad we avoided another hospital stay! I'm so use to her g-tube which is easy to replace here at home that I didn't know this would be such an ordeal. Good thing it is only replaced once a year.

Other than that we didn't do much yesterday. Last night Maya had a rough night and was up several times crying. Not sure what was wrong, but seems better this morning. We are going to take it easy today and try to finally get things unpacked and settled.

Holly

Tuesday, October 26, 2004 5:52 PM CDT

We are home! It's hard to believe. Maya is glad to see all her stuffs again and just to be home. We are waiting for Pookie's arrival here in a little bit. It was weird to come home and not have him greet us.

We have lots of new meds and changes to our schedule. I'm sure it will take awhile to adjust to all the changes and find a new schedule that works to get everything done. Right now Maya is getting meds every few hours and IV meds twice a day. That is on top of 22 hour feeds, her irrigation,and her other general care. We'll figure it out, just might take awhile to feel like we are doing anything other than medical stuff.

There is a lot of other stuff going on now too. I'm trying to get a van so that when Maya gets her new chair I can actually take it somewhere (or bring it home for that matter). I suppose I have the upcoming days to figure these things out too. Tomorrow we are having a nurse come out to start her PICC line care and bring supplies. Right now Maya's energy levels aren't too great so we aren't going to be going anywhere anyhow between her energy and her having to carry her pump around I can't wait for her chair to get approved and ordered. It should give her lots more freedom and independence.

Pookie just arrived and I think he's glad to be home, but not sure as I can't exactly find him right now, LOL. I was glad to see him as was Maya. Thanks so much to Karla and her family for putting up with him and taking him into their home while we were gone. Thanks to for all the cards, calls,etc. They really do mean a lot to both of us.

Will update tomorrow to see how things go and when I can think clearer. Can't wait to sleep in a real bed.

Holly

Tuesday, October 26, 2004 8:03 AM CDT

Ok, lets try this again. WE ARE GOING HOME!!! Will update from home this afternoon.

Holly

Monday, October 25, 2004 1:38 PM CDT

Ok, second update of the day........we are going home in the morning. There is too much to organize and set up to get us out of here today. We have to be back in 2 weeks to see surgery and then in 4 weeks to see everyone else. Maya can't get her feeding up higher than a 22 hour rate without being uncomfortable so we will go home that way along with home IV therapy and the rest of her meds. As you know with her, things change quickly so we'll have to wait and see how long things last this way.

Nothing else new today, we are pretty consumed with getting things around to go home and coordinating all of our follow up appointments. We were able to meet some friends from an e-mail list we are on who's daughter is also here. It's always nice to meet up with friends and others who share many of the same experiences we have.

Thanks for checking on us.

Holly

Monday, October 25, 2004 7:13 AM CDT

We are going home today! It will most likely be this afternoon after they get things set up for us at home with home health. I'll update from home. Thanks for checking in.

Holly

Sunday, October 24, 2004 8:04 AM CDT

I've decided the next time I'm able to get a decent nights sleep I'll be in a nursing home somewhere. Maya was awake lots last night. I finally just got in bed with her risking waking up in a soggy bed in the morning. After that she slept until 6am when she declared she needed her scissors and to start cutting her paper.

This morning I heard from one team of doctors that we can plan a discharge for Monday and one who said the end of the week so I haven't a clue when we will break free. Since Maya is not tolerating food at all we are going to try to get her to a 20 hour feeding schedule and go home that way. She'll still have 4 hours to be free each day, but won't have to worry about eating and then getting sick. She's been ordering food and then not eating or trying and getting sick. It also sounds like she will continue with her erythromycin through her PICC. This is the med we are currently using for motility. In some ways keeping her picc will be great since she can get blood draws through it, but then she can't get it wet so no swimming which she loves so much.

Not too much else new except she just tried to cut off her ear with her scissors so those have now been retired. Such a silly girl.

Holly

Saturday, October 23, 2004 12:12 AM CDT

We have finally seen all the docs for the day. It looks like discharge early next week. From what I understood today Maya will go home with her PICC line for her IV antibiotics she is taking for motility along with the ones for bacterial overgrowth. she is also using a probiiotic now also the doctor calls it a "can't hurt, might help" drug. We are still waiting on the nephrrology and urology test results and are on a two hour voiding schedule right now trying to avoid adding yet another medication. The other change may be in her formula. She is not tolerating much if any oral intake right now so she is going to switch from just nightly feeds too three times a day then 10 hours at night. We are also switching to a predigested formula. I think that tops out our day so far and it's only noon.

Last night in the playroom the kids made pillow cases which was fun. Maya's has here name and a rainbow on it. We also had a visitor from our church yesterday and a nice suprise. Brittany and her family also stopped by to visit before they headed home. Therapies are done for the weekend, but she's done great and worked hard all week. We've done lots of puzzles as this seems to be her current obsession. She has really enjoyed all her mail and little happy packages too. She's covered with stickers and tattoo's which makes her a very happy little girl.

Not much else going on here. Weekends are always slow. Thanks to the amazing childlife staff though she is never bored.

Take care and thanks for checking in.

Holly

Friday, October 22, 2004 7:25 AM CDT

Another Friday........

Yesterday they attempted to slowly increase Maya's tube feeds. It went well for awhile, but then she began to get a belly ache and we slowed her down to 10cc/hr. Breakfast and lunch didn't go over too well, but she was thrilled about dinner although she ended up getting sick after a couple of bites. Through the night they were able to get her feeds back up to 20cc/hr. She's bloated again this morning, but they haven't measured her yet so I'm not sure if she's actually bigger or not. The other docs who came yesterday were from urology so we are doing timed voiding in hopes to avoid another med being added. For the past few monnths she has been having lots of urgency and yesterday she got up and voided more than 700cc which is twice what her bladder should hold. After she breaks free we'll have to come back for urodynamic studies again as hystorically she does have some problems in this area.

Maya did make it down to the playroom several times yesterday and had PT and speech. Not only does she need the consistancy of this, but it is also something she looks forward to. She continues to fatigue easily but not really anymore than she was before her surgery. We also had visitors yesterday as Jakey had an appointment and so did Brittany. We met both these friends a couple years ago here when they were both at Ronald McDonald House. It was nice to visit and see everyone again. www.caringbridge.org/wi/jacobdavid www.caringbridge.org/mn/brittanyross

Thanks for continuing to check in and for all the words of encouragement.

Holly

Thursday, October 21, 2004 7:16 AM CDT

Check out the new pictures! Thanks for adding them Karla.

I can't believe it has been 16 days since we came and I'm finally hearing the phrase, "...and get you out of here." Things continue in a positive trend. We irrigated her c-tube yesterday but nothing happened, kind of like when we use to give go-lytely in the g-tube. You would think putting it right in the colon would help, but of course Maya always writes her own book for how things should work.
She was able to eat some dinner last night and ate about 1/2 a small bowl of spagetti o's. We started tube feeds last night too at 5cc and have moved her up to 10cc/hr and she seems to be tolerating them well. TPN is down to 20 hours a day too. Things are definately looking up.

Last night was a halloween party in the playroom. Maya had fun making soap and a mask. She also played a bowling game and ring toss which she loved. I actually went outside for a walk which was nice since I hadn't been outside since last Friday. I can't believe how the weather had changed just since we came in.

Thanks for checking in and for the continued encouragement.

Holly

Wednesday, October 20, 2004 6:32 AM CDT

Yesterday Maya celebrated her two week anniversary here. We are hoping not to celebrate a 3 week. We started our morning with a gastric emptying scan and ended our morning with more of the same. It was a four hour test. They put radioactive formula in her g-tube and then took hourly pictures to see how it moved. It was delayed...not really a new piece of info. The good news is it did move so today we will start some feeds and then wean the tpn. We did have some blood sugar problems yesterday, but they were corrected. Because her c-tube continues to leak she will go down for a scan today where dye is put through it before we start using it. She ran a low-grade temp yesterday (100.4) so that is something else to keep an eye on. All in all we are making progress. Hopefully the next few days will continue full steam ahead.

We did squeeze in PT, OT, and Speech yesterday along with a visit from Maya's school speech and language therapist. She brought lots of fun school stuff to do and other really cool stuff. Maya loved being read the books she'd missed and even a book about herself. She also received a card from her class she has hanging on her wall.

We had a rough morning already today, but I'll spare you the details, just know everyone needed a shower when it was over. Thanks to everyone for the cards, packages, mail notes, calls, and guestbook entries.......you guys really do brighten our days.

Holly

Tuesday, October 19, 2004 5:47 PM CDT

I just lost my entire entry and have no energy for another. Things are progressing here and the end of our stay is in site. Willl update in the am.

Holly

Monday, October 18, 2004 3:16 PM CDT

Ok, the day is getting away from me now. We started the morning with Maya crying her PICC line was hurting. The PICC team nurses came to change the dressing and you could see it was pulled out most of the way. They disconnected everything and called thhe doctors. While we were waiting on that one they came from lab to do a blood and urine (cathed) collection to do at the same time. Since the PICC line was out this meant she had to get stuck for the blood and cathed right away afterwards. We then heard from the docs they could not save the PICC and would be taking her back down to place another (more anesthesia). So, now we are back with a new line, TPN back on, meds going and finally a chance to breath. She ended up not getting therapies since she was busy most of the day and tomorrow looks much the same way with a gastric empty scan on tap for the morning and at some point a renal ultrasound. We continue to keep her g-tube to gravity and this helps a lot. She did have zofran yesterday too and that seemed to help.

Child Life has been great about helping her with everything and keeping her occupied. They really help her deal with anxiety over what is going to be done and also find fun things to do.

Thanks for checking in and for the notes, guestbook entries, phone calls, mail, and prayers.

Holly

Sunday, October 17, 2004 10:44 AM CDT

HAPPY BIRTHDAY AUNTIE JESSY!!!!!!!!!!!

It is hard to believe that 18 years ago today I was sitting in a hospital room waiting for my sister to arrive. Sorry I can't be with you. I hope you have a wonderful day!


Maya had a rough night last night. She was restless and thrashing most of the night and needed pain meds which she hadn't needed for quite some time. Yesterday she had a very intense episode of pain which doubled her over, but it was short lived and after a dose of meds she seemed better. It was right at her c-tube site and I'm thinking she must have caught it on her pull-up or bumped it as she didn't even respond like that post op. This morning she is feeling well again. We saw nephrology and she has ordered a metabolic urine test and u/s as she was due for her 8 month follow up and then she'll decide if any changes need to be made. GI came in and discussed maybe using a j-tube to move beyond the stomach and still avoid needing so much TPN. The surgeons feel she is doing great as far as their end goes and will start using her c-tube Wednesday (you can look at the journal history from a couple days ago for further explaination of what tube does what). She also has seen the rest of the docs already today and they are letting her try a popcicle. She took one lick and told me to "get it out of here, Mama!"

Maya has become a scissor maniac. She cuts and cuts all day long. Yesterday someone dubbed her Maya Scissorhands. We had visitors yesterday (Karla, Jakey, and gang) which she enjoyed and even went down to the second floor to see the fountain. She just lasted a few minutes, but it was good for her to get off the floor for a minute. Miss Karla also brought all her mail from her PO box which Maya opened this morning. Thanks to everyone who's sent her Happy Mail, she's had fun this morning going through it and playing stickers.

Tomorrow is her ultrasound, PT, OT, and Speech along with whateveer our other step for the day is going to be. I know we don't see nephrology again until Tuesday. Tomorrow will be 2 weeks since we got here.....silly me only planning for 2 days!

Please keep my friends son in your prayers. He will have major chest surgery tomorrow. You can visit him at www.caringbridge.org/ny/vanya .

Holly

Saturday, October 16, 2004 7:22 AM CDT

Good Morning! We've already seen a few docs today and things are about the same. Still draining through her g-tube and some wretching with meds. She had to be taken off her acid-blocker so she's having more symptoms with reflux so they are adding zantac to the TPN. For some reason her Nissen (surgery she had to tighten that path back up from the tummy) does not take care of the reflux like it is suppose to. She also had the hiccoups last night which she was having daily at home and hasn't had since surgery. She was bloated though which triggered it most likely.

Maya is up and playing and very happy Jakey, Devin, and Michael are coming to see her since Carl got to break-free from here yesterday. The little guy next door is already up and driving the tractor this morning so Maya wants up too. I suppose I'll have to head to the playroom with her soon.

We are sitting tight and learning the art of being patient. They are still holding out hope that she will come back off the TPN and things will move smoother. It may mean returning to 24 hour feeds, but we will see. It is Saturday and not much takes place on the weekends around here.

Thanks again for all the notes and encouragemement.

Holly

Friday, October 15, 2004 8:19 AM CDT

The day's blur together here, I was suprised to hear it was Friday already. Maya slept in until 6:30 today. In fact one of the residents came in at 6am and was so shocked she was still sleeping he said he'd come back later. While I'm talking of shocking behavior, the medical intern came in while I was changing her bed and helped me change it! Very impressive. Yesterday Maya continued to have problems with even the volume of her meds. In fact she was to gravity for about 6 hours last night and had 175cc out through her g-tube. They started her on IV bicarb yesterday in an attempt to put less into her tummy, we'll see if this helps. She is starting to get some skin breakdown around the c-tube so we are cleaning and watching carefully. It drains a bit still so that is irritating the skin.

OK, since I've started we've now seen GI, surgery, speech, and physical medicine. Speech will see her every day and physical med is going to have PT and OT see her also. GI's feeling is we are still waiting for things to work and surgery feels things are going really well. Her skin is very dry so we are restarting vanicream which is what we use at home. We are starting to develop some routine to our day here also. Meds still occupy most of the day though, but they have changed many to IV.

Last night they made goop in the playroom. Maya would not touch it. In fact she got some on her shirt and flipped out making me change her clothes, sheets, and get the entire bag out of her site. Can you tell she's a little sensitive to texture? She's in the playroom now making a pumpkin with her nursing student so I'm getting a little break.

Thanks for checking in and for the guestbook notes, they are the highlight of my day.

Holly

Thursday, October 14, 2004 6:19 AM CDT

Day 10.........no end in site.

I have to admit that is not necessarily a bad thing. Maya is doing really well with the TPN and I really believe strongly she's been lacking nutrition for awhile now. We have been reducing feeds hoping to keep her comfortable for awhile now. I was looking back to when I started this journal almost 2 years ago. Even then she was having belly pain with her feeds. It would be nice some day to not hear, "my belly hurts" for some long stretch of time. Maya continually amazeses me with her strength, courage, and ability to perservere and enjoy life.

I haven't heard back about labs yet, but I'm hoping things still are staying where they should and she doesn't slip back into being acidotic. This last blood sugar was 84 which is suprising since her TPN has D-10 in it and she has D5 in her other port where she gets meds. We try to keep it 100-120. It is far from being low though, just a puzzle. Her G-tube remains to gravity most of the time now and we finally have some output that matches her intake. Just talked to the surgeon who feels everything looks good on their part. Next Wed they'll teach me to use her new tube. She's now on medical service primary so they'll be in later as will GI and Genetics (metabolics) to see if there will be changes. They put in an order for PT, OT, and Speech yesterday as she is missing all this stuff from not being at school. Usually she gets this there.

Maya's been up for awhile now, I really wish she'd sleep past 4 or 5. Mommy needs her beauty sleep (anything could help at this point!) I always end up sick after a hospital stay, combination of no sleep, dry air, and all those other joys of the hospital that lower resistance. Please pray I stay healthy as I feel something trying to sneak up on me. Maya is still loving her Adventure Dress-up Dora. It keeps her busy most of the day. She of course loves the playroom and her ever growing list of obsessions. Yesterday that included shreading lots of paper into tiny pieces, seeing if she could bite her nails shorter than she already had the day before, and putting tape on everything. She loves to play with tape.

Again I can't thank everyone enough for the guestbook entries, e-mails, phone calls, etc. Until you've done your time in club med I'm not sure you could realize what an uplifting thing a short note can be. Please keep Carl in your prayers today as he is having surgery to have his port removed in hopes of getting rid of the infection and letting him get on with his treatment. You can visit him at www.caringbridge.org/mn/carcar.

Holly

Wednesday, October 13, 2004 6:48 AM CDT

"If you want to hear God laugh, tell him your plans."
Mother Teresa


People have asked about a mailing address, it is at the bottom. Just add her full name to the top.

I saw this yesterday and was reminded how God has a plan and a reason for all things and although have my own plans they may not be the road I am to travel at this time. So, am sitting tight and learning the art of being patient.

Last night they came in to do labs (through her line--yeah! no more stickies for blood!) and then started her TPN. I was reminded yesterday by more than one person I use a lot of medical terms without explaining myself so let me back up. She has a PICC line. This is a central line, much like an IV as it is in your arm, but instead of threading into the little vein in your arm it is really long and goes up to the big vessels by the heart. This way lots can go through it that your veins would not normally tolerate like some meds and IV nutrition. Its location also gives them the ability to draw blood through it. It also has two lumen (or little plug in areas) so you can run lots of things that can't be mixed together. She has 3 running all the time, TPN (total parenteral nutrition--or lunch in a sack as we call it), lipids (basically fats), and IV fluid that is used to run her many meds through. She is on lots of meds. We are still using her g-tube (the tube that goes right into her tummy) for venting (it is left open and hooked to a bag so the air, bile, etc can drain out and not make her tummy hurt). The c-tube in in her cecum or the start of the colon. Once healed this will have a tube connected to it and a solution will run through and clean her out, eliminating the lower motility issues she was having. The doctors describe it as an enema from above. So, that is where we stand with tubies right now. The plan is to let her tummy rest for a few weeks right now then see if she can restart tube feeds. Because of her mito she has motility issues and things move slow. They call what is going on now a pseudo-obstruction. Like something is causing a blockage, but there is nothing physical there.

On the fun side of things. Maya made a paper chain yesterday that she has hanging from her IV pole It almost reachhes the ground. She loved making it. She also made an art picture from medical supplies, painted, and played candyland (well, sort of). She is really enjoying having our friend Carl across the hall. We first met him 2 years ago. He rides his bike over to get her to play here and waits until she's ready. They were too cute yesterday in her bed playing. (www.caringbridge.org/mn/carcar) They have really had a good time. Tonight is bingo (sorry Michael) in the playroom and always a big hit with the under 10 medical set. I always say they are making chronically ill kids into chronic bingo addicts. We've been in four hospitals, 3 Ronald McDonald houses, and even on our Make a Wish trip played bingo.

We've already seen two docs this am. Surgery said she is healing very well and the tube is starting to seal up. GI just came in to say her tummy is just not working and even 12 hours later her meds are just sitting there. They are working on changing what they can med wise to more IV. This is most likely why we are seeing more seizures too. I'm also pushing to get here in some therapies, especially speech if they can as we are on week two now with nothing and she is clearly struggling with some issues.

Thanks for checking in and for all the messages in the guestbook and e-mails, phone calls, etc. It makes my day to hear from you guys and know there are people out there thinking of us and praying. We have great doctors and with God guiding them I know they will do what is right for her.

Holly

Tuesday, October 12, 2004 5:17 PM CDT

I thought that I had posted already today, but came here and realized I hadn't You'd think the way the day drug on I would have noticed sooner. Today the chaplain came and stayed with Maya while went and got some laundry done. I was only planning a short stay so I have to do it pretty frequently. Anyhow, I was walking back to the hospital and thinking how embarrasing for me to have to walk along a busy road with a bright blue Tellytubbie backpack. This coupled with the fact I'm in the same shirt for the third time this week and had a conversation with the doctor this morning and looked down after he left to see part of my breakfast on my shirt. God only knows what he was thinking. Most likely wondering how I could expect him to get food in Maya when it didn't even look like I could get it in my own mouth!! Anyhow, I got to thinking of all these hospital indignities I was facing and remembered how proud Maya was walking to the playroom today even though she has one tubie hooked to a drainage bag, another draining yucky stuff in a dressing, having to wear pull ups again, and multiple IV's in her arms. She was happy just to be able to get out of bed and play...she doesn't complain, doesn't whine, says thanks even to those who have to do something to hurt her. After thinking that I swung my bright blue Tellytubbie bag over my shoulder and wore it with pride. How many people get the joy of being mommy to a brave, sweet little girl who even in the midst of everything still asks to rub mommy's back before bed (then kicking me out of the bed to my two inch piece of foam where I refuel for the next day).

That being said, still no TPN. It is now day 8 without nutrition. We are getting there though. PICC is being used now and her other line is out. We saw genetics, GI, surgery, and the nutrition team today so things are set there. No seizures today which was good and less leaking from the c-tube so we do have may positives to be thankful for too.

Until tomorrow,
Holly

Monday, October 11, 2004 11:05 AM CDT

Update 7:20pm
Good evening. This afternoon flew by and I'm just finally sitting down to update. Many changes this afternoon. First off they are starting Maya on TPN and took her down to place a central line. We had a PICC placed for the time being so we can use it quicker. She'll start TPN tomorrow and they are trying to change all her meds to IV if they can. They are going to give her gut a chance to rest then see if we can restart feeds. If not, then she'll remain on
TPN (IV nutrition). Her C-tube which is in the start of her colon is still leaking lots of yuck so we are using a skin barrier around that on the skin so it doesn't break down as it is getting pretty red. I'll update tomorrow as we get things started.

I can't believe tomorrow will be the three year anniversary of Maya's official adoption and citizenship. Hard to belive she was ever that tiny little girl I remember. She is growing so big now.

Well, I don't see us going home again today. Basically we are doing meds from 7:30am until 11am very slowly and even then she is wretching and nauseaous during them then we leave her to gravity for an hour during which time it appears they are all running back out and then it is time for noon meds and 2 o'clocks. She takes a break then feeds from 4-6pm att 10cc 1/2 strength and we start 8 o'clocks which take until 11 or 12 and then feed 2am-6am at the same rate. She continues to get zofran every 6 hours too which is also helping. The new tube is still draining and just awhile ago she got sick to her tummy and lots of stuff shot out of her c-tube enough to soak her pull up and the bed. I can see this is going to be a fun recovery, but I'm told that part will improve. Right now we keep a dressing and a pull up on to contain things. The NP came in this morning and said she'll teach me how to use the tube sometime soon so we can begin flushing it. GI came earlier and was going to talk to her regular GI to see what the plan of attack is. We added another antibiotic this am, but no other changes. BS remains in the 90's which is good too.

On the sunnier side....I got to do laundry today, Yeah! A lady came by with halloween quilts today for the kids and there was a purple one with cats on it dressesd up so Maya is thrilled. Yesterday a friend of mine came by as her son Corey had appoitments today with Dr W. We had never met in person, but I have been talking with her online for over a year and was so excited to finally meet her (sorry Jo!) She got me yummy chocolates and Maya a Dora doll. Maya hasn't let go of Dora since. She has her in a full array of ponytales currently. Thanks to everyone who's sent chocolate I should soon put on the wt that Maya has lost, LOL!!!

GI service just came in and we are switching some meds to IV as they are not being absorbed right and another GI study to see if her tube is leaking. I'll update when I know more hopefully this afternoon.

Holly

Sunday, October 10, 2004 9:34 AM CDT

I'm starting to feel like I'm staring in the movie Groundhog Day! Each day repeats itself with very little variation. This morning I didn't even have to place my order for breakfast...the lady even saw me coming. The checkout lady is even the same and she noticed I get the same thing, pay and need the same change, and ask for a receipt each day. The doctors come at the same time, say the same things followed by, "Lets give it another day" and then leave. Lab comes and the routine goes on. Maya is very routine oriented too so her days, thoughts and words are often the same too. Then the order she plays with things remains the same. Other than that life is not too bad.

Maya is still requiring zofran iv for nausea every 6 hours and her tube (g-tube) is to gravity. We are not using her c-tube although it is draninig some yucky stool around it. I'm told it will seal up as it heals. Right now she is back in pull-ups because of this, but that is ok too at least it contains things. She is still on D10 and sugars in the 80's and 90's. She was aloud to start eating today, but gagged on her popcicle so we will try again later. She's moody, but in pretty good spirits.

Today our friend Corey and his mommy might come visit as they have clinic appointments tomorrow. He has mito too. Also Karla and sweet Jakey may come back too. Our little friend Carl is currently inpatient too and wizzes by on his little bike calling out "HI" several times a day also. He is so cute riding around. Yesterday he brought Maya a stuffed cow, Grace, from Home On the Range. She slept with it last night so was kicked out to the "parent bed". I put that in quotes as calling it a bed is a very generous statement.

Again thanks for the calls and the notes, the prayers and positive thoughts. Will update if something changes or tomorrow, whatever comes first.

Holly

Saturday, October 9, 2004 7:58 AM CDT

It's now Saturday....so much for a "quick" stay. Maya had a pretty good night. She finally quit having so many seizures. She is currently getting her zofran (for nausea) and pain meds IV around the clock and this combined with keeping her g-tube to drainage seems to be doing the trick and keeping her comfortable. I have no idea what the plan will be if we have too keep the tube to drainage. Doing it this way means she's not getting nutrition or tolerating meds (she's on tons). It took most of the night to get bedtime meds done and now we are looking at starting her morning meds. I'm not sure if anyone who reads this has gone down this path, but if so I'd love to hear you ideas and take on this. The doctor peeked in this morninig once and felt the redness around the c-tube site is better, but we are going to continue all three IV antibiotics at this point. Last night she gottt up and walkeed to thh ebathroom whihich was an improvemeent also. Maybe today I'll convince her to go to the playroom too. I'll update this evening if I find out anything more or if things change.

Thanks again for all the notes, e-mails, messages, etc. A big thanks to Karla too for taking care of Pookie for us and maintianing Maya's site when I couldn't and most of all keeping me sane and bringing my Jakey to visit yesterday. Maya and I needed our Jakey fix.

Holly

Friday, October 8, 2004 10:51 AM CDT

Friday 4:15
Just wanted to update quickly. Theey put Maya back on all her IV antibiotics and put her g-tube to gravity drainage. She is also back on IV nausea and pain meds. All this combined seems to be making a difference although not putting us closer to going home. Plan is to continue and then consult with GI and neuro Monday.

Hi everyone. Maya is still here at St Mary's. She still isn't herself and is not wanting to eat. In fact she is wretching and gagging just looking at food. They took her down for some tummy pictures a little bit ago (stat about 3 hours ago, LOL) and we are waiting to hear from the surgeon. I think they are going to talk to her GI doc too. I know a few days ago they talked to her mito doc and so we are kind of working on things from multiple points right now. Not sure where things are leading as this was not the plan for how things were suppose to to with this surgery. I guess now we wait and pray for some guidance as to what the next step will be. I want to thank everyone for the call and notes and to those of you who have sent us little "pick me ups" thank you too. We appreciate everything. Will update later as I have a laptop now.

Holly

Thursday, October 7, 2004 6:26 PM CDT

Good evening everyone! Maya seems to be acting weird today, not herself at all. She has been sleeping most of the day, not wanting to eat, and very lethargic. Her tummy is hurting a lot. No word yet on when they will be released. Keep the prayers coming!

I updated the bottom with her new phone and room numbers.


Karla

Wednesday, October 6, 2004 8:17 PM CDT

UPDATE! Maya was moved to the regular peds floor this morning. Her new room number is 3-109 and phone number is(507) 287-4621.


Hello everyone. This is Karla, letting you know how everything's going. Maya had a rough night last night. They had to bowel prep her for the surgery and it wasn't a fun experience. It appeared that she had a seizure as well and started to vomit. This just added to the problem. After 4 dresses and Holly having to run back to Uncle Donald's for some more clothes for herself, she was ready for surgery. Her mito cocktail had to be held because of surgery. She became acidotic, her Ph was low, sodium and potassium were low, and her blood sugars were high. The surgery itself went well, but because of the metabolic crisis she is in, she was transferred to the pediatric intensive care unit (PICU) tonight. Hopefully they can get her acidosis under control and she will be back on the regular floor soon. This generally is same day surgery, so this is definitely concerning. Maya isn't quite happy with the fact that she has a catheter. She told Holly that she has an owie on the front of her butt! She is too funny!

Please keep Holly in your thoughts and prayers. The phone number for her room in the PICU is (507)287-4307.


Karla

Monday, October 4, 2004 6:23 PM CDT

UPDATE! Holly called today and said they checked into St Mary's. Maya is in Room 3-104 and the phone number is (507) 287-4600. Please keep both of them in your thoughts and prayers tomorrow.

Hello from Uncle Donald's house. Maya is being admitted to St Mary's tomorrow with her surgery scheduled for Wednesday followed by her MRI. They are admitting her early since she can not fast and will need to be on D10 to keep her blood sugar up overnight. They also are planning to do a bowel prep before the surgery which will take most of tomorrow. She's happy to be back at the house tonight though. We are on the 3rd floor, but in the same room that we were in just about 2 years ago the first time we brought her here. It is weird being in that same room again and brings back so many feelings from that first trip here.

Our weekend was nice. We did some errands and got some of the cleaning done for our time away. We also spent time loving Pookie up since he will be missing us so much while we are gone. I always hate leaving him. Maya really misses him when we are gone too. We also went to the park this weekend to play hide-n-seek. This is Maya's current favorite activity and she wants to go play it all the time. She also likes to go "treasure hunting" and picks up leaves, rocks, "stickses" or whatever other treasures she finds.

Not much else here. I'll be sure to update as soon as we have a room and phone at the hospital, but until then I'll put our number here as I'll be able to check that also (hopefully) while she's inpatient.

Thanks for checking in. I'll update tomorrow as soon as we know more.

Holly and Maya (she typed that part herself as she always wants to type on the computer!)

Friday, October 1, 2004 2:48 PM CDT

We've had a busy time the past few days. Wednesday wasn't too bad as I got some errands done, my hair cut and the oil changed all at the same time (gotta love Walmart!). After I picked Maya up from school she was tired so she napped and rested most of the afternoon and then we had to run to the doctor as she had an appointment with the pediatrician. Maya's been getting sores in her mouth and was complaining of a sore throat. After the horrible time I had getting over mine last week I thought we'd better check it out before her surgery. I also had a list of things I'd been meaning to take in to have signed for awhile now so we took care of that too (I doubt the doctor realized how high maintenence we were where she agreed to take Maya as a patient after we moved, LOL).

Yesterday after school we went up to Rochester to the seating clinic at St Mary's. Maya got to test drive a couple different power chairs and tried out a manual chair too, but she fatigues pretty quickly when popelling herself so it wouldn't help her out much to go that way. She did a great job driving if she could go slow and there wasn't too much in her way. They were pleased with how she took too and and she kept saying, "make it faster!" I think my daughter has a need for speed. In the morning at school they had an assembly and the people from Oktoberfest where there singing and dancing the Polka and playing their accordians. Maya loves music and singing so much and when she went outside to eat her snack she was in her wheelchair and the other kids were on the playground. They said the festers came over and played for her and she sang "It's a Small World" with them and they gave her some buttons too. I wish I could have seen her as I'm told it was priceless.
Last night we went to the torchlight parade for Oktoberfest and it was dark, but everything was lit up with lights or those glow sticks. Maya was enthralled with the whole thing. She loved the dark and the lights and music. Of course the fact she's figured out they throw candy too doesn't hurt either. After all that excitement she never did sleep last night.........so tired though and I dreamed I was at Disney World as all I kept hearing was "It's a Small World After All...."

Today her adaptive PE teacher took the kids to the therapeutic swimming pool. It is heated so the kids won't get cold and at the hospital in case there are any problems with the kids. Maya had a wonderful time and even floated on her back by herself for a few seconds. She LOVES the water, but usually between the energy used to be in the water and the temp doesn't last long at all. I picked her up from there as it was time for noon meds and she'd need to eat. I looked back on the way home and her fingers were blue as was her mouth and lips. She was all covered up, but hands were like ice. It took awhile to get her "pinked" up again, but she was fine. I think it is just a lot for her to swim, but if you'd see her you'd know it's worth it.

No plans for the weekend, just going to get things cleaned up and packed for our return to Mayo again this week. The plan is for her to be admitted to St Mary's on Tuesday and then she'll have surgery on Wednesday. They are also going to do an MRI at the same time.

Hope everyone has a great weekend.

Holly

Tuesday, September 28, 2004 8:00 PM CDT

Today was a so very happy day. First of all I feel great. I got to sleep in this morning as I wasn't going to school until after lunch. Because I knew how much my mom needed the sleep I got up at 4am and started singing away. I think I heard her yell at me from her bed a couple of times, something about going back to sleep.....it's still dark out.....something to that effect. This prompted me to climb out of bed and unhook my tubie so I could go in and hug her and tell her I love her. My plan worked because magically the TV turned on with a Dora video! I was so very quiet until I forgot to be and then I decided to practice my music makers! I thought I had it made then. Mom got up and helped me get dressed and some breakfast. I was so very wrong! The clock only said eight-three-o and I was back in my bed taking a nappy! Can you believe her? I was going to prove her wrong and stay awake forever, but the last thing I saw was the numbers eight-three-two and I was out. So much for trying to plan my own day. After I waked up and ate my so very cold lunch we went to school. I got to ride in the van with my friends and go to ride rides with the special fester. There were 5 kids and 5 of our teachers who went. We are all special in our own way, but we love to ride rides! I had so much fun. I rode the horses on the Merdi-Go-Round and rode the very faster ride my teacher called the Scrambler. I also rode the pink dinosaur and the dragon coaster. We got to go as much as we wanted and there were no lines to wait in. My teacher got me french fries too for my snack and I loved them! Yummy. Mommy came to take some pictures before it was time to go home and said she'll put them on the picture page. There is one of my and my friend on the very faster ride and you'll have to look hard for me because I was all squished down from the ride going fast. I had my wheelchair so I didn't get too tired while we were there. This evening, before dark, we went to my treasure park. This is the place I like to take my purple pail and pick up stickses and other treasures. I played on the swings too. I played hide-and-seek with my mom and she smiled a lot. She likes to hear me giggle and just have fun like little kids should. I was feeling GOOD so it was lots of fun for both of us. When I play hide-and-seek I hide in front of the tree right where you can see me then ask mom where I am. She pretends to look all over for me before she grabs me and hugs me. When it was her turn to hide I didn't see her so I picked up a big stick with leaveses on it and asked it where she was. I kept saying, "hmmm I don't see her" to the stick and then I made it say, "I don't know where the mama is" It was so fun and then when I found her I tickled her with the stickses leaveses. On the way home we stopped at the library. You have to be quieter there, but I found out if I look at my mom over the top of my glasses with my wicked grin we get to leave really fast........I think she might be a little scared of me sometimes. Thats the plan anyhow. We did get my favorite library movie which is Big Bird with yellow feathers and a map in Chinas or Big Bird Goes to China as my mom says. Anyhow.......today was a good day! A so very good day!

Yesterday (not such a good day) I went to school in the morning and then came home and slept for a long time. We had to go to the medicine store when I woke up and they messed up everything and then told mom that the insurance isn't going to pay for a bunch of stuff anymore. I don't think this made her happy because she put on my Barney tape on the way home and talked to herself a lot so I couldn't hear her.

Oh, today I got mailses too! I love to get fun mails from my special errand store (post office for those who need interpretation). Mr. Chuck sent me another post card. He's the guy who keeps my mom on her toes when she forgets to update. I also got new slippers with God Bless America flags on them from my Nan. I got mail from my loyal Hugs and Hopers too! What a happy day I had........I think I'll smile all night long.

Goodnight!
Maya

Sunday, September 26, 2004 2:52 PM CDT

Good afternoon. Not a lot to say here, but it's been a few days so I thought I'd post a short update. I've been sick since we returned from Mayo and actually had to go to the doctor for myself for a change. It really bothers Maya when I have to go to the doctor and she gets upset saying she doesn't want me to be sick. She can be so sweet. Friday we both took it easy as her tummy is still giving her a hard time and I still had a temp. Yesterday we did manage to get out for a little bit and go to the Oktoberfest parade. I was hoping that fall had actually come to some point and heat wouldn't be an issue, but although it was cool the sun was out in full force. Maya did ok then just wasn't tolerating it at all and had to lay down in the shade for awhile, but overall seemed to enjoy the parade and watching all the people. She came home and took a long nap (so did mommy) then was up just a few hours before sleeping all night and most of this morning. Little things like that just seem to really wear her out sometimes. Today I still don't feel well so we are hanging out and she is watching movies and shreading cups of colored paper. Not sure what that is all about, but she's having a great time and stiring them with spoons and trying to feed them to the cat. Pookie isn't buying it even though he loves to eat, but he is letting her play with him and humoring her by pushing the spoon with his nose. Tomorrow is back to school for Maya and then Tuesday they are going to the Oktoberfest for Specialfester day with her teacher. I'm hoping she feels well enough to go.

We return to Rochester on Thursday and then still waiting to hear when her surgery and MRI are going to be.

Thanks for checking in.

Holly

Thursday, September 23, 2004 5:51 PM CDT

We are back home again. Just beat a storm coming into town so we even got the car unpacked before the rain hit. Of course we had rain and wind in Rochester and part of the way back. It is kind of something that happens to Karla and I when we travel together. The last 4 times we've dealt with horrible rain and wind on the way back.

This morning we went to the seating clinic and will return next week to check out a few different chairs and decide what is the best way to go. Two of the options we will need a van, but they seem like the best option for her.

Yesterday we ordered Maya's new glasses and had a chance to take a break before the appointments today. It took me that long to recover from Tuesday. It looks like we will be back in later October for a nephrology consult as it's been 6 months. Along with that goes u/s, blood work, urine, etc. We are on a cancelation list for the tube placement and MRI as it is not always easy to coordinate multiple appointments needing anesthesia.

Pookie is glad we are home again and is telling me all sorts of stories with his meowing. He just won't leave us alone as he's making up for lost time. Maya has one of those "fur-real friends" that is a cat so he is stalking it and trying to figure out why we now have another cat. He swatted at it and it hissed at him.......pretty funny and entertaining if you ask me!

Thanks for checking in on us and for all the notes in the guestbook while we were gone.

Holly

Wednesday, September 22, 2004 8:40 AM CDT

I didn't get a chance to update last night as yesterday turned out to be a very long day at the clinic. We started our morning in developmental pediatrics and he made some school recomendations and a few little tweaks to her medication schedule. He also recommended Maya be started in OT and Speech privately as well as in school. He doesn't reallly focus so much on the physical issues and I'm not sure we really need additional PT so we are going to stay with the above right now.

Next we saw the social worker with some recommendations for resources for working with the school and community to get the services they would like her to have. One thing that is suggested is an intermittent homebound program since historically Maya misses so much school, but not in a pattern of several weeks at a time. This would help make up for the lapses in her educational program that she is missing right now by not being in school. This is also not something that is required by the state so after we are home again we'll have to talk with her school as there are many ways this could be done.

The afternoon is what really got busy. We started with seeing the GI doc who had several recommendations. One was that they would like to place a tube that would help flush out her lower GI tract as there is such poor motility there. This would hopefully eliminate this problem considerably. The other option talked about in addition to this for the upper motility is to go on TPN which is IV nutrition. There are a lot of ups and downs to that plan so we are holding it in the wings right not in hopes of elimination the lower GI issues that the upper might improve enough to avoid TPN. The other thing is Mayo does not have a home TPN program for kids so we would have to go somewhere else to do this. When we were there they arranged for her to meet with GI and the surgeon together, but she had to go up to see neurology first. Neurology was running late so we ended up running there and then some issues came up that were a little more than we thought we'd be dealing with so we were up there quite awhile and missed the next appointment so as soon as neuro was done we went down to surgery which was done seeing patients, but waited for us. Needless to say it was a long day and we didn't even get back until around 6.

The neurologist felt that the chances Maya had a stroke back in July when some of the changes we've been seeing took place were pretty good so she has ordered another MRI. This will be done with anethesia and usually takes awhile to set up and coordinate. We should hear in the next couple day the plan there too. She also had to increase Maya's seizure meds to cover the breakthrough seizures she is having. It was a good visit and I have a lot of confidence in this doctor and she is always good to talk to.

Today we don't have a whole lot to do, but tomorrow we go to the seating clinic at St Mary's to decide on a new wheelchair for Maya as fatigue is getting to be a pretty big issue.

Maya still loves staying at her Uncle Donald's and is enjoying bossing Jacob around (and checking out his super cool toys). Thanks for checking in and we'll update when we know more.

Holly

Monday, September 20, 2004 5:03 PM CDT

Today was a busy day. Maya got to the point she just wanted " to go home ". Finally she let herself fall asleep in her wheelchair and was much more pleasant when she woke up. This morning we saw the doctor's in physical medicine and decided it was time for a new wheelchair for Maya to give her more independance. We meet again on Thursday to discuss what would be best. They also felt that her foot and ankle problems are most likely dystonia so we'll have to discuss that further with the neurologist tomorrow. We then saw behavior medicine and Maya was thrilled her little friend had an appointment right after her so they got to play in the playroom together for a little bit of each of their appointments. This afternoon she saw the dietician and she is holding steady on her weight. Still down a bit from 4 months ago, but the same as 2 months ago. She has plateaued in her height, but some of that is due to all the GI issues we are dealing with. The final appointment for today was with genetics who primarily deals with her mitochondrial disease. He agreed that fatigue is becoming a much bigger issue along with her ability to use nutrients, but is hoping that this is secondary to the GI issues and not primarily metabolic. He felt she does have some fatty oxidation issues, but these are also secondary and don't require any changes to her treatment at this time. We'll see him again in 3 months so he can recheck levels and such after some of the GI issues are (hopefully) resolved.

Tomorrow we'll see GI and neurology along with developmental peds and someone else I can't think of off the top of my head (I'm already on information overload). I'm sure they will have some input and ideas too as those are the biggest issues we are dealing with right now.

Maya is excited that they got a new playset here and unfortunately it is right outside our window so she has to remind me that I promised her she could go out. Of course it is too warm so that is a sore spot with her right now. We went out last evening and I'm hoping that she'll want to go out by this evening again and not be too tired. She's also enjoying pushing Jacob around in his Kid Kart and has only run him into a few walls, LOL!

I'll update again tomorrow after appointments. Thanks for checking in.

Holly

Sunday, September 19, 2004 8:24 AM CDT

UPDATE!!!!!!!!!!!!!!!!!!!!
maya....I am practicing using the computer here at Uncle Donald's House and I keep bugging mom to type my name. Just wanted to say we got here safe and sound....will update tomorrow.

Today we are going to Uncle Donald's House. My mom said she is hoping we can get a room since the last few times they have been full. If not we'll stay at a hotel so I can go swimming! I like to go to Uncle Donald's the best though. We are going to the castle to see my doctors (castle=Mayo). Mom mama said we have to see lots of them until Wednesday. I told her I only want an owie if I can have the rubber band when they are done and a sticker. I love those little rubber bands they tie up my arm with to make my veins stick out.

Yesterday we took my Nana to the train to go back to Papa's house and so she could see Auntie Jessy at home too. I miss my Nana. She is my best friend and I love her. She came and read to me and got to see my purple school. We let her see the big fish too. (see pictures). My Nana slept in my bed so last night I told my Mama I wasn't going to sleep there, I just would sleep with her like when Nana was here, but for some reason--I lost that game so off to my own bed I went. Sometimes messing with the Mama is so fun, but not when you lose. I was trying to drive her nuts yesterday at the store. I like to see how naughty I can be before she drags me away screaming. It is an art I'm trying to perfect--I lost that game too. Mama is no pushover.

When Nana was here we went lots of places and I collected so many stickses and rocks. All my pockets were full every day and now the house is full too. They are around every corner and in every nook and cranny. I know because Mama kept going "grrr!" each time she cleaned another room and found my stash. Can you believe she threw them out? She said I'd have to collect more later.

Well I'd better go help my Mama get things ready for the castle. I want to make sure she packs my Dora stuffs and my kitty. Thanks for checking on me.

Maya

Friday, September 17, 2004 8:13 PM CDT

We have had a wonderful week with Nana here. You can tell since I haven't even updated or been on the computer all week. I will try to add some pictures after she leaves tomorrow. We took Nana to see Grandad's Bluff which overlooks the city and also to all our favorite parks. We found some new places to take walks outside and showed her the big fish on the river. Maya had to take her over her favorite bridge at least once. There is never enough time for everything of course so she is going to have to come back again. Maya was so excited to see her get off the train as it was planned as a surprise and each morning has checked to make sure she is still here. I'm not sure what tomorrow will bring when we have to put her back on the train to go home. The weather other than one day was wonderful and Nana got to see Maya's new school which made Maya very happy.

Sunday after we reorganize ourselves for another week Maya and I are off to Mayo for the majority of next week. Lots of appointments including metabolic clinic and follow ups with several others. We are hoping to stay at Uncle Donald's House and Miss Karla and Jacob are coming for a round of appointments too which should be nice. It is always nice to have someone to talk to and bounce new information back and forth with.

Yesterday we saw the pediatrician and made a few modifications to Maya's school schedule and some ideas to help her not get so tired while she is there. Her weight was stable so that was good although she is still not tolerating all her feedings.

thanks for checking in.....new pictures should be up tomorrow.

Holly

Monday, September 13, 2004 6:11 PM CDT

Last night was Maya's sleep study. She did really well letting them hook up all the wires and such. They did a full EEG also so there were lots of extra wires everywhere. She also had to sleep with wires next to her eyes, under her nose, and on her chin, legs, and arms. The study did not show any respiratory problems although that wasn't why were were doing it anyhow. She has restless leg syndrome and as been taking a medication, but recently had several times she fell out of bed so they were checking to see how things were going. It looks like the meds are doing there job for her legs as there was a dramatic change int hat part of the study. They think she is having seizures at night causing her to fall out of bed on those nights. They are going to discuss this with her other doctor's and decide if she needs a med increase or not. The other concern was her iron levels. This is a catch-22 situation as she needs the iron to maintain her hgb and ferritin, but iron is toxic to the mitochondria so you have to watch how long she is on it and how much she gets. They did levels today again and also a hgb to see where it is. Two weeks ago it was in the 9's which is a little low for her. We'll follow up on this next week during metabolic clinic and we'll be at Mayo for the first part of the week.

This past weekend we didn't do too much. Saturday we hit some rummage sales and hung out with Karla. Sunday was church and we went up to Mayo yesterday afternoon. It's always wierd to be there on a Sunday as the clinic is quiet and empty which is such a total opposite of any weekday. Tomorrow Maya has a suprise coming, but she doesn't know yet. Her Nana is coming to see her. I'm not going to say anything until she sees her step of the train.

Thanks for checking on us.

Holly

Friday, September 10, 2004 3:44 PM CDT

Friday......you would think Maya had actually been attending school forever as when I told her there was no school tomorrow she did a happy dance! She loves school, but it just takes a toll on her. She is so tired she doesn't always make it home (a whole 5 minutes) before she falls asleep.

Wednesday we went to Mayo to see the opthamologist. It took three of them looking at her to come up with the big news......SHE IS A TOTAL MYSTERY! I could have told them that without even looking at her eyes. Basically everything that is going on with her vision and the muscles in the eyes does not fit together. They do one thing one direction and then the opposite thing with a different exam. They are going to do some more extensive tests in 6 months to determine what her visual fields are to see how much is just damage from her strokes affecting things and what is not. They were concerned that she is not visually processing what she sees so the eyes are seeing something and the brain isn't sending the right message. So, we are nowhere on this issue except they are admitting there is something more going on than just acuity issues.

Yesterday Maya went to school then crashed all afternoon. Very sleepy. Wondering if she doesn't have a UTI again, but waiting to hear back from nephrology as it could be related to the kidney issues. Last night we went to the funeral home for a visitation for another child. Maya did fine as she didn't get why we were there, but she behavied wonderfully and was quiet. They had a boy scout service for him then we slipped out. It's so hard to see people lose a child, please keep their family in your prayers.

Today was school again and I watched Jacob so Karla could go to the funeral. We had fun playing with Jakey and watching Barney. Maya was excited to see him waiting in the car for her after school. Pookie was ticked, he isn't a big fan of babies unless they are eating and there is food to be had from the deal. He even fights me for Maya's formula when I'm getting her feedings ready! He always licks the cans and has on occasion bit through her feeding bags to get at it. What a weird cat. The other day he ate a nectarine out of the fruit bowl.

This weekend we may go to the storytelling festival in town then Sunday we have to go up to Mayo for Maya's sleep study. She'll follow up with then on Monday morning to see the results.

Take care and thanks for checking on us.

Holly

Tuesday, September 7, 2004 7:06 PM CDT

Hi everyone! I'm having a good day today so I thought I'd give my Mama a break and do the 'putier today for her. She did put up some new pictures of me for you to look at though. Sunday I felt yucky and owie so I didn't do much, but yesterday I felt GOOD! My mom took me to the mall and pushed me in my wheelchair so she could walk and keep me cool at the same time. Of course she got me french fries too....I think those were to keep my mouth shut for awhile. After that we went to the park. I love to go to the park. I got to go on the slide and so my favorite thing, pick up stickses. I took Miss Karla's phone case and filled it with grass, rockses, and little stickses. I also found pine cones or "little trees" as I like to call them. Devin and Michael were collecting mothes and taught me to play hide and seek. Who knew you couldn't hide behind a skinny little pole?! Yesterday we also went to another park that I really like. There isn't really stuff to play on except a bouncy bridge and a tree that is sideways. I also like to pick up....yep you guessed it....stickses. Mom and I played there for awhile too and she took some pictures. Mama said I was so funny, I was playing on the swings on my tummy and trying to catch the pole that holds it up. We were both giggling so loud.

Today I went to school, my teacher is nice. We did my mom's favorite things today, but I'm not telling her what that was. Sometimes I can figure out the words to tell what happened or remember right so I just say something else so maybe no one will notice I'm a little confused. My mom has caught on, but lots of people still don't know my trick. This trick makes me seem more like the other kids. Id id tell her I did my favorite thing at school today, LUNCH! I had potatoes with cheese and the teacher sent my other food home. My tummy still doesn't like to do what it is suppose to do so sometimes I can't eat much cause it makes my tummy hurt. After school I cam home and took a nap then watched a movie of people who talk with their hands. I like to talk with my hands and like to learn new songs to sing with my hands too. Mostly I played today and had fun.

I need to go to bed now, my mom seems to think I'm going to the eye doctor tomorrow at Mayo. She keeps telling me it will be ok, but I just know there will be drops......I hate drops. They hold you down and squirt drops in your eyes and expect you not to try and close your eyes and wiggle all over. Then they take to to a playroom where you can't enjoy playing with the cool new toys because you can't see anything right because it's all blurry now. After all that they tell you that you can't see right and need new glasses. WELL OF COURSE I DO, you just messed up my eyes with those drops. Oh boy, when will they learn? At least I'll get yellow french fries out of the deal and diet brown pop.

Thanks for checking on me. I need to get back to fixing my kitty. I like to brush his hair and put pretties on him. I take my little blower and do his hair with that too. He can't really like it, but I so very love to do it so I don't care what he thinks. Bye bye.

Maya

Sunday, September 5, 2004 9:04 PM CDT

Well, so far Maya's weekend has been uneventful. Yesterday we got up early to go to some rummage sales before the heat set in and found a few things. I am always looking for things she'll find interesting and found a viewmaster projecter which she loves. She closes herself in the bathroom (the only room without a window) and will look at the pictures for the longest time. It came with some Sesame Street discs and she has a new love for Big Bird after seeing Sesame Street Live. We then hit the grocery and were home by 11am. The rest of the afternoon we hung out and I deep cleaned the kitchen.....sounds fun doesn't it?! This morning we went to church then hung out at home. It has gotten hot and humid again, although today wasn't so hot, but still humid.

I'm hoping Maya has a better day tomorrow. Today she woke up and half of her face was swollen. She had a sore throat too so I was thinking of all sorts of things, but once she was up for awhile the swelling seemed to go down so I'm not sure what that was all about, but seems better now. She was not herself all day though, really quiet and very agreeable, nice, but not normal. She slept through church, took a nap, and was asleep by 6:30 tonight. I'm not sure what to think, but she'd better keep it together at least a few more days as her pediatrician is off until Wednesday.......isn't that how it always works? Her tummy on the other hand is somewhat better today. She ate pretty well this afternoon and is tolerating her feedings at 30/hr now. We are having to feed her more often, but at least she is tolerating them.

We have no plans for tomorrow, it is suppose to storm all day anyhow. I am going to try to get some more cleaning done and I promised her we'd go buy batteries for her spinoza bear. He is a little bear that plays story and music tapes and she sleeps with him now. He also must survive on batteries as he eats them like they are going out of style :)

Thanks for checking on us, we love hearing from you.

Holly

Friday, September 3, 2004 9:07 PM CDT

Today was Maya first day of school. She of course had to miss orientation and the official first day as is her trend. Yesterday we stopped by at the end of the day so Maya could meet her teacher and see her classroom. I really wanted her to do this before she started as becuase she has so much trouble processing information you can't really explain something that she's never experienced to her. I didn't want her to be confused when she showed up and had a different classroom, kids, and teacher as last year. In her mind there was no summer break and this was no different than going back on a Monday after the weekend. I'm still not sure what she thinks, but she got to look at the room and we got to meet with her teacher and the school nurse. Last night she told me that she would not be going to school today, but would stay home with me instead. Of couse this morning she had no recollection of the tears and carrying on she did last night as she never even mentioned it again and got up and ready for school and left without argument. We had to get up early to get meds done and ready in time.

I picked her up in the lunchroom where she was enjoying her first taste of chocolate milk, which she loved! She's still not eating much and not tube feeding much, but she managed to eat a few bites of her hotdog, a couple ounces of milk, and a bite of peas for lunch. She told me there are kids in her class and a boy named Jacob......"just like Miss Karla's Jacob, but big" Maya is only going half days and has an aide with her in the classroom this year. Seh was so tired when she got home and took a nap, but woke up happy.

Medically she is doing about the same. She is bloating really bad and can't wear a lot of her pants so she's in dresses most of the time which makes her happy. We started the new meds and hopefully will see a difference soon. She is going to go on 1/2 strength feeds during the day since she's not eating much or tolerating many feedings during the day. Most of the time I am venting her tube every 2-3 hours to keep her comfortable. Her cold sores are finally healing up too. This week we go up to Mayo, but not for GI and then the following week we will have her sleep study and see the pediatrician.

Thanks for checking in on us. Have a great holiday weekend!

Holly

Wednesday, September 1, 2004 6:26 PM CDT

Well, it's hard to believe it's been over a week and a half since all this started. We are finally home and hopefully for good this time. I have to say thanks to Karla for keeping this site updated and keeping me sane.

Maya had a hydrogen breath test today looking for bacterial overgrowth. If you'd see the test you wouldn't believe it was real. Basically you blow into two baggies every half hour for 2.5 hours after eating some glucose and then they suck the air out with a syringe and send the "air" to the lab. I'd say it was a scam if someone tried to tell me without my seeing the results myself. They actually measure the amound of fermentation going on in the stomach and since the bacteria love sugars there is lots of fermention with overgrowth. Of course then the doctor told me that her numbers were very high before we even started the test which means there is even more bacteria and they didn't need the extra fuel to create a problem. The GI doctor feels that her motility is so poor both in the stomach, small, and large intestines that nothing is moving much at all and therefore allowing all this bacteria to breed. They are still waiting on the biopsies from her stomach and esophagus to see how much damage this has caused. Since the only medication actually available to treat dysmotility has been pulled off the market we are going with the erythromycin method which has showed some help in other cases. In addition she has to be on bactrim and flagyl to contol the bacteria. As if her 19 medications are not already enough to figure out, we are now adding these three.......sound simple? Of course it couldn't be.....we give med one the first week, then one and two the second, then one and three the third. The fourth week we rest then start over the next week. She is bloating so bad now that she can't fit into her pants half the time so she's in dresses. All that air pushes on the liver and other organs and is causing her pain and just the fact nothing moves and then blows up is why she is vomitting. Enough details?? Wait there is more! After a month we are going to consider changing her formula to a non-carbohydrate formula to see if this helps also although we need to see what happens first.

Maya is glad to be home and IV free after having this entire time even when she had her break from the hospital. She immediately added her syringe caps and ear probes to her marble and dice collection and is busy sorting away (in full dancing skit attire). Friday she'll start back to school after a day of resting tomorrow (resting for her that is, I have a thousand things to do). I've talked with her teacher and sounds like everything is all set up. We go back to Mayo next Thursday, but that means a whole week off so yipee! Pookie is glad to have us home too.

Thanks to everyone for the notes in the guestbook and those of you who e-mailed. It means a lot to know your thinking of us.

Holly

Tuesday, August 31, 2004 9:28 PM CDT

Maya had her endoscopy today and it went well. There was some concern with the fact that her dinner from 6 o'clock last night was still in her stomach this morning. They were going to suction it out, but it was still solid. She finally had a blow out today to remove all the barium from yesterday. Thank God we were out of the room for that one! LOL She just picked at her lunch today, even though she was so very hungry. Maya also has some crazy breath test tomorrow and then a follow up with the GI dr to hopefully make sense of all of this.

Maya continues to tell the nurses how things are to be done, grabs the caps from the syringes and ear probes as quick as possible, and removes her own blood pressure cuff, folds it and puts it back into the machine. She is so darn cute and cracks me up all the time. She did feel good enough to walk down to the playroom this afternoon before we left.

Hopefully Holly will be home tomorrow night and will be able to update again!

Love, Karla

Monday, August 30, 2004 9:14 PM CDT

Hello everyone! Holly called today to say that they are now at St Mary's after a busy day of appts at Mayo. Maya had an upper GI with a small bowel follow through. Needless to say, it took forever for it to move through, because of her slow motility. I think Mayo made the record books at Mayo for the most follow up x-rays! She also had an ultrasound of every possible organ in her body. Tomorrow, she will have an endoscopy and EGD. Holly thought she'd also have a colonoscopy, but no word on that today. Hopefully something will show so that they can understand where the pain is coming from.

Please continue to keep them in your thoughts and prayers as this has turned out to be a very long week for both of them. You can reach Holly at St. Mary's Hospital,
Rm. 3-146, (507)287-4413.

Love, Karla

Saturday, August 28, 2004 1:59 PM CDT

Let me tell you what a cool collection I have started of syringe caps! I love those things, but if one more person tells my mom they are a choking hazard and tries to take them away I may have to choke them. I also have a small collection of ear probe covers from taking my temp which I find make great false finger tips. I have kept myself so busy with these and my totally awsome pink, purple, and green stretchy's they use to squeeze my arm to draw blood, I almost forgot where I was (until of course they came in with the pokey to check my blood sugar). I basically have spent the entire week in the hospital and finally escaped today on a pass to see Elmo! I was not going to miss that little red guy if it meant making the escape on my own. I'm not sure what they would have thought of a kid who rolled in on the base of her two IV poles, but I would have found out.

The plan today (this changes as my mama has been quick to find out) is I got to leave with my IV in. We have to call the doctor this afternoon and decide if I have to go back tonight for my IV or if I'll hold out until we go to Mayo tomorrow. Either way, I have having an ultrasound of my gall bladder, tummy, and kidneys Monday morning and then an upper GI (ie: drink nasty liquid chalk then lay under some monster of a machine for awhile). I am so glad I have a tubbie so I don't have to drink that stuff anymore. I really hate those machines though, I'd get 15 IV's if I could avoid a tummy picture. We then have to see my tummy doctor and he will send me to the hospital to get more IV's and depending on what they find he is planning to do my colonoscopy and endoscopy. I will spare you the details of the fun that takes place the night before those lovely proceedures. They are then going to do some more tests on Wednesday so I'll just hang out there until they come up with what is making me so pukey.

Today we saw one of my nurses at the Elmo show and she got me a balloon they had there. My mean ole mom wouldn't get me one, something about her not being made of money! Can you believe that? I also got a super cool balloon in the hospital from my mom's pal which I love! I told my mom I want to be a balloon.....someday, maybe tomorrow and she laughed. My mom is running around trying to get things cleaned and the laundry done so she can pack us back up. I tried to explain I was fine with not going back to the hopistal, but she just hugged me and said, "here, drink this" A girl can only be told to drink this so many times when she has to wonder what people are up to. I've decided since everyone at the hopistal is so bossy I'm going to be too so I told them how fast to push my meds, what finger to stick (ok, so I kept giving them a finger then changing my mind at the very last second just to stall, but I had to try), and only I could run the blood pressure machine, no one else!

Well, I'm hoping to sleep in my purple house tonight and then to go Uncle Donalds tomorrow since I have to be there very early Monday. I will try my hardest since my mom looks like she's been rolled overy by a truck. I think she needs sleep, a shower, a meal that isn't made in a cafeteria...I don't know who she thinks she is?! A PRINCESS? Thats all it could be since I'm the QUEEN...Its good to be the queen!

Maya

Friday, August 27, 2004 6:54 PM CDT

Hello everyone! Maya's pediatrician finally heard back from the GI doctor at Mayo. He wants to do some further testing to figure out what the tummy trouble is all about, so Maya will be at Mayo for appts Monday. She will then be admitted to St Mary's to have surgery on Tuesday. She will have a scope done as they are trying to figure out if it is gallstones, gallbladder, slow motility issues, reflux or something with her Nissen. She will be inpatient for a couple days I am sure. Hopefully they will find out what is going on. Maya is not tolerating her feeds well at all, so the IV was started again today. She may be discharged tomorrow. If not, she will get a pass tomorrow morning so we can go see Sesame Street Live! I am so excited to see Maya and Jacob's reaction to it!

School starts on Thursday for Maya, and once again it looks like she is going to miss the first day. It is much more important though to get these issues under control. Kindergarten will be waiting for her when she comes back :)

Please keep Holly and Maya in your thoughts and prayers.

Love, Karla

Wednesday, August 25, 2004 9:49 PM CDT

Thursday morning update: Talked to Holly this morning. She is still waiting for the pediatrician to come in. More labs were drawn as well. Maya was thrilled when the lab tech left her a purple tourniquet to play with. So far she has a purple and pink one, a collection of syringe covers and ear probe covers. Holly is calling her Bert from Sesame Street with all her strange collections! LOL Maya is also continuing to tell the nurses how to do things. She especially is the expert on her tubie and how fast to do her meds. Crazy kid!!!

Hello everyone! Maya is doing better today after a rough night. She was vomiting, lethargic, just not herself. Then her heartrate started getting really high, only to dip occasionally. It was well into the early morning hours before Holly was able to go to sleep. Blood was drawn, tests run, and her Ph levels were also way off. Maya's pediatrician was by this morning to check on her and is consulting with Mayo with the results of her blood tests. She was concerned with the whole tummy issues that Maya has been experiencing lately and the vomiting that was happening last night and into this morning. Holly is not sure yet when she will be discharged.

Maya was much more spunky today when we saw her. She was busy watching Dora and Blues Clues. Holly and I got a chance to visit, even though the child life volunteer was extemely annoying coming in all the time! LOL I left our portable DVD player with 2 Barney movies, so Holly got a chance to watch something on the TV besides Dora or cartoons, something I think she was very thrilled about! I also left her a brownie to enjoy, since anyone who's been in the hospital with their child knows that chocolate is a staple to help your sanity!

Please keep Holly and Maya in your prayers!

Love, Karla

Tuesday, August 24, 2004 2:06 PM CDT

UPDATE: Saw Maya and Holly tonight. Maya was doing really well, and then she got really sick all of a sudden and started vomiting. Please keep the prayers coming!

Hello everyone! I am letting you know that Maya was admitted to the hospital today. Holly went to wake her up this morning, and she could not keep her awake. She took her into the clinic and the labs indicated her CO2 levels are very low and she is acidotic. Please keep Maya and Holly in your prayers. It never gets easier to see Maya sick and she could really use your thoughts and prayers. You can reach Holly at (608)785-0940, room 526.

Love, Karla

Sunday, August 22, 2004 5:43 PM CDT

Hi! My mom is getting old and forgot to update last night so I figured I'd jump on here and do it for her. We just got back from a busy visit to my Nana and Papa's so we are both tired of sitting in the car. Mama has lots of stuff to unpack, but not me! I am just going to sit back, watch a movie, eat some brown ice cream with white and play with my toys that I feel like I haven't seen in ages.

Friday we went to see my Auntie Jessy's new big school. It is so big it has a bridge, water, and ducks at it. I saw the big red house my Auntie will be living in and Jessy's Chad's house too. I rode around in my chair for a long time and got to feed the ducks all my orange crackers so that was fun. Mostly it was boring since everyone (but me) thought it would be fun to go to some stores. I did get a green hat with a "5" on it. They keep telling me it is an "S" for spartians, but I'm still calling it a "5" since they keep tellling me it isn't. I really like to see how long it takes to drive my Mama crazy. I'm really good at it. Yesterday we hung out at Nana's and I played with the hose watering the flowers, grass, house, my Mama's car and whatever else didn't run out of my way. It was fun and then I picked up rocks and stickses. I put them in my red wagon and washed them up with the hose. My Auntie got out Vinnie the donkey for me to ride too and I got up all by myself--almost. I rode around and even got to trot around. I love my Vinnie so much. We ran to the store where I told everyone how hungry I was even though I had just eaten, but I find this also drives people crazy so I continue to do it. When we got home I had turkey burgers and I love them so much. I also had chicken on a stick which was yummy especially cold. I told Nana I like some hot food and some cold food so this morning I had cold ice cream and hot chicken for breakfast. Last night my Papa put up a yellow trolley for me between the trees. It is very much fun to ride on and I did it lots of times. I can't wait to go ride it again. If my Mama gets her act together tonight I'll have her put the pictures on my picture page. Today we rode in the car forever to come back to Wisconsin. I was pretty happy and played while my Mama listened to her story on the tape player. I sang songs and did my talking with my hands for awhile. Then I shredded whatever trash I could get my hands on and threw it around the car. When I was bored with all that I decided to ask where each thing was......my slippers, my hat, my shirt with Dora, my shoes that are white, and well you get the idea. I killed about an hour asking these silly questions and my Mama was laughing at me I was being so silly.

Tomorrow I get to go to my new kindergarden school and do some things then to the Castle Doctor on Tuesday (my Mama calls that Mayo). She said I have to get "drops". I hate drops, they put them in your eyes until you can't see straight and then tell you you need glasses, whats up with that? I also see my fun doctor that day and get to play with my friend so that will be the good part.

Hope everyone is fine and thanks for seeing how I'm doing. My mom will be back soon and write in a couple days, but I might take over on Sundays to give her a day off.

Maya

Thursday, August 19, 2004 9:27 AM CDT

Hello and happy Thursday! We made it back to Michigan yesterday with very little traffic and no bad weather. That doesn't happen too often so it was a nice change. Even Chicago wasn't too bad. Maya did pretty well on the trip with a little bit of tylenol before we left. She played the whole way here, but about two hours before we got here she started to get antsy and there were toys flying everywhere in the back seat.

Tuesday we just finished up some errands at home. Maya got her school supplies and backpack for school and I had a doctors appointment. When we get back next week Maya goes back to for therapy and to see the eye doctor. We have a couple of things to attend to get ready for school. I think there is a cook out and then orientation one night.

Maya is thrilled to be at Nana and Papa's and to see Auntie Jessy again. She is planning to go out and ride the pony today and she Vinnie, the donkey. She loves Nana's new fountain out back and played in there with the water yesterday. She also took the hose and suprised both Nana and the dog by spraying them with it!

Thanks for checking in!

Holly

Monday, August 16, 2004 10:49 PM CDT

Finally Home! It was a very long day, just ask anyone who encountered us! It was a good day though, we had our appointment with the sleep clinic and they want to do another sleep study since Maya is falling out of bed so much. The thoughts from the doctor are that maybe she is having seizures making her be so active during sleep or possible apnea. The other thought is that her restless leg syndrome is not being controlled any longer with the meds she is on. They'll do a full sleep EEG along with the other testing during the study. The doctor also ordered some labs as her labs the last time we were there low and one of the values was the lowest (not a good thing) he'd ever seen in anybody. It always makes you feel great when they tell you something like that and then follow up with, but I'm sure it will be ok.

Maya is still having a horrible time riding in the car. I premedicated her this morning and it seemed to help, but her feet are so cold and the capilary refill is so poor sometimes I'm not sure we are where we need to be on this issue. Today her finger tips did the same thing, but she was warm everywhere else. Definately something to address again with the neuro in September when we see her.

This weekend we spent Saturday exploring an area near here that has restored homesteads, farms, cabins, etc from the 1800's. The area is actually a nature preserve also so it was pretty neat. I always enjoy looking at places like that and Maya put up with me for the afternoon doing so. She enjoyed collecting sticks and rocks and thowing them in the creek though. Sunday we went to church then Maya and I went to the park and had our lunch we'd packed under the trees. It was a beautiful day and not hot at all so we had a great time. She played for a while on the playground too before coming home. Today of course was our trip to Mayo. We don't go back not until next week so we are going to take off for Michigan on Wednesday to spend a few days there with Nana and Papa before returning home on Sunday.

Thanks for checking in, I had actually thought I updated yesterday and then looked only to realize I hadn't....oops!

Holly

Friday, August 13, 2004 9:55 PM CDT

Good evening. Yesterday we made our trek to Mayo and back. Maya had a lot of leg pain on the way there which is partially due to the position she has to sit in in the car. She has small fiber neuropathy in her legs and this causes her leg and foot pain, couple this with her circulation when sitting and she has significant pain when sitting with her legs down. I ended up pulling over and giving her some motrin so she'd be more comfortable then gave her a dose before we even left Mayo. Our appointment went fine and Maya is actually enjoying her therapy. Part of the time she gets to be with another little girl and really enjoys this.

Today we just took it easy and went to a few garage sales, one of our favorite summer, Friday morning pasttimes. We found a couple Barney movies she didn't have so she was excited to come home and watch them. This evening we went swimming at the YMCA which she totally loves. She made it about 45 minutes before I had to haul her out as she was very fatigued and shivering (it wasn't cold, but she does that when she runs out of energy). After getting changed I pomised her some French Fries on the way home. She's been a week without her beloved French Fries as the doctor wanted to eliminate some fats from her diet thinking she is having problems with fatty oxidation disorder secondary to her mito. We are waiting on confirmation from her skin biopsy, but changing her diet some in the meantime. She was thrilled to get her fries though and told me, "these yellow fries make me smile...you make me smile too Mama." I guess coming in second to an order of McDonalds French Fries isn't too bad, at least I beat out Dora!

This weekend we have no plans, if the weather continues to be nice (under 75) then we'll hopefully get some much needed park time and enjoy one of the few summer weekends we have left. We go back to Mayo on Monday for the sleep clinic (see photo page, LOL) and then are hoping to make a trip back to Michigan Wednesday next week for a few days since after school starts next month we won't be able to make that trip as often.

Thanks for checking on us.

Holly