Walking In My Shoes

Camping!

2009-09-12T16:20:00.001-07:00

I'm not much of a camper, even in someone's backyard, even with the bathroom 15 feet away, and even with an air mattress as thick as my regular bed mattress. I guess this is even more proof on how I've been overcome by my daughter's magic powers. There is no one else in this world I would have slept (or not slept) outdoors for. Regardless, I'll admit, amidst my complaining it was really fun to watch her taste her first smore, roast her first marshmallow, and get the wits scared out of her by the train that I swear drove right through out tent in the middle of the night!

Bedtime Stories

2009-09-08T18:57:00.000-07:00

As I was putting Butterfly to bed tonight she looked at me and told me she was going to be a big sister. Imagine how puzzling this was for me since I had no knowledge of this and no ability to make her a big sister. She continued on with the fact that SHE had a baby in her belly... "I'm not sure if it will be a girl or a boy Mama. It might have brown skin like me or pink like you. It might have curly hair or straight and it might even speak Spanish! I don't know if it's an India or America, but I know it's a baby... well a baby or a mermaid."

I think I may have a few things to clarify for her, well that and limit how many time a day she watches "The Three Bears and the New Baby"

Filling the Boot

2009-09-06T13:44:00.000-07:00

Today was the annual Fill the Boot fundraiser for the MDA. Actually depending where you are in the country it's different days over the weekend. Our local fire department did theirs today and invited us to be a part of the fun! Butterfly was thrilled to do her part holding the big boot and helping gather donations for Muscular Dystrophy. I had to laugh as when she was interviewed by our local TV station they asked her a bunch of questions then she paused and while still on the air said, "now I have a question for you... why exactly are we here?" Yep, nice. We've only had this discussion for weeks and participated for two years now! We also did a newspaper interview on the same subject this week. My, my, my.... sometimes that child baffles me. She really does have a future in sales though. So many people tried to leave the grocery (we did this outside our local grocery store) and not make eye contact. I know this trick as I use it quite often when people are trying to either sell me something or collect money that I'm not planning to give. Anyhow, they'd quickly walk by and avert their eyes and she'd call out from her wheelchair, "excuse me! Please fill my boot! The money goes right in here!" I'll admit, several people who clearly were not going to stop too a minute and dug their spare change out of their pockets and dumped it in. She's a braver soul than I, that's for sure. I did have to tone her down a bit though since she was relentless when people kept walking by. She got her rhythm though and without being obnoxious people seemed to respond to her.

We are so blessed to have a group of firefighters who've taken my little Butterfly under their wings and helped to keep her flying. They are are always there for her with an encouraging word or a visit. Just a nice group of guys. It's so good for her too with her limited contact with people. As far as the MDA and helping them with this project, we do so mostly because technically she is qualifies for services through MDA (camps, clinics) since she has a neuromuscular disease that is under their umbrella, but we don't currently utilize their services, but the research and opportunities they've provided so many kids is worth it regardless. I also think putting faces to diagnosis help people to see that we are talking about people and/or children, not a bunch of letters and medical diagnosis you can put in a neat little box.

All Worn Out

2009-09-04T19:36:00.001-07:00

We survived the week. It's hard to believe how much fifth grade is wearing me out! :)

Butterfly did really well. She made it 3 days this week for half a day which was wonderful and then had speech here on her days off. We also had a good doctor's appointment on Thursday and other than some mysterious bumps in her liver numbers things looked great. She's so worn out tonight, but has the weekend to recover so should be fine. Sunday we have to help with the big MDA fundraiser with the local fire department. The main diagnosis that Butterfly has is under the MDA umbrella so we'll be out with the firefighters for the annual "Fill the Boot" drive. It's a national drive so keep your eyes open this weekend.

Yesterday Butterfly was on her "cell phone". You know the ones you get for $4.99 at the Disney store where the princesses call and talk to you? Well, she "called" her Nana with the following advice. "Nana, in order to feel better you need to eat your porriage, have some fish stew, and go to bed and have fun... maybe Papa can help you have fun in bed. Put him on the phone, I'll talk to him." She then "talked" to Papa giving him the recipe for fish stew and told him to have Nana have fun in bed... maybe even color and play on the computer with her! Hee! Hee! So funny!

Thanks to all my readers for returning, I've missed you all too.

School is Back and So am I!

2009-09-01T14:43:00.001-07:00

Today was the first day of 5th grade... for both of us! Well, it was my second, first day of 5th grade, but whose counting? Butterfly has the honor of attending school with her Mama since the school won't do their job and hire her a nurse and then to top it off they didn't even have an EA (education assistant) for her like it is STATED IN HER IEP so I got that job too. We were both so messed up we took a quiz and the entire class was one number 8 of a quiz and we were still on question 1. It doesn't help that she can't write anything more than her name and this consisted of short answers. So there I sat writing for her. Needless to say a meeting was in order by 9:15 this morning and she was pulled out in the resource room. She's just going to be in her room for a half an hour for greetings and announcements and then return to the resource room for all her other activities. She only attends 2.5 hours 3x/wk, but since by the time we left she fell asleep in her chair on the way out of the building I think it was plenty.

Nothing much new on our side. It's been about 6 weeks since I've been in the blogging arena. Been in the hospital with Butterfly part of the time and just trying to keep life going the rest of the time. I miss my blog though and all of you and I promise to come and visit and catch up with each of you this week. That's one nice part about this school thing. I can take my computer and just do her meds and she can do her work with her teacher in the resource room. Since I have a purpose for being there and such I won't feel guilty for being on the computer! Not that the hours I've spent "farming" on facebook this past month have caused me great guilt anyway... just sayin'.

OUCH!

2009-07-22T04:50:00.000-07:00

My mouth hurts, my tongue hurts, my cheek hurts, and oh yea, did I mention my mouth hurts? 2 days, 2 dentist visits later, well they tell me they need to "start over". All this for a simple crown, a temp at that. My tongue is ulcerated as is my cheek. My mouth won't close all the way which is fine because when I do mange to close it I get searing pain throughout my entire head.
Yep, good times are being had here.

ON other notes, we are heading back to the big city by the lake today to hopefully NOT land in Club Med. We'll see hwo that works for us.

I do promise to catch up on my blogs, sign my comments, and be a better blogger.... really.

Holly

Have I been locked up too long???

2009-07-07T09:11:00.001-07:00

Well, I'll let you decide.

Have you been locked in a room too long when you.....

*Have to entertain yourself by seeing how closely you can zoom in on flowers planted against the hospital across the way? (we are on the 5th floor of Children's and there is an adult hospital next door).

*Try to zoom in enough on people enjoying their lunches that you can figure out what exactly they are eating?

*Design hula hoops and other exercise equipment out of thermometer probe covers?

*Drink excessive quantities of water and soda because it give you a reason to take a short walk (to the bathroom!)?

*Discuss at length why it is Max and Ruby don't seem to have any parents, but yet have a grandmother (must watch Nick Jr to understand this one)?

*Spend a good amount of time researching what exactly Uniqua from the Backyardagains really is... have both online and inperson discussions regarding the matter and enter heated debate over why or why she is not a ladybug, cow, etc...

*Realize much of Facebook is just glorified Webkinz for adults, but that doesn't really stop you from spending time on your "farm" or with your "pet".

*Develop carpal tunnel from playing typing maniac so much just because you are trying to beat someone who won the third grade spelling bee in a spell down against you in 1980.

Now, you may think the fact I have time to write such a lengthy, useless, nonsensical post means all is well here at Club Med, but it's just the opposite, it's unwell and I'm trying to pretend it isn't happening. We are on a witch hunt of sorts. Looking for a ball of infection we know is in there, but hiding. Fevers, cat scans, pain, bleeding.....

So until next time I think I'll go back to the window and see what else I can zoom in on with my camera, after all, the Butterfly is sleeping and I've had way too much Mtn Dew to sit still much longer!

A little look at our digs

2009-07-06T13:23:00.000-07:00

Things continue to progress. Some good, some not so good. She needed blood again this morning and is back to running a pretty good temp. We did her first ostomy change today and I started learning what exactly to do with the care of it. All in all, we are making strides, but struggling still with other things.

I figured I'd give you a small glimpse into our lives here in room W501.

This is where sleep....

I actually sleep here part of the night and in the recliner for the other couple of hours. Then there are the times I crawl up in bed with her if she needs me to, but anymore there are just too many tubes and wires to do that with much ease. She's not such a big fan of it anymore either.

Here is here bed and space... she loves the TV on the boom and all her "stuff" close by.

This picture gives you an idea how big our room actually is....

Since we are frequent flyers they let us have the big room. It's really nothing other than a big room. Everything else is the same. It's nice and quiet though and it's the only room in the ICU where the big glass doors don't face straight in the entire room for all to see. I like that feature when I'm sleeping. It's hard enough to sleep knowing someone is in the room and watching/hearing you as you sleep. Always hoping I'm sleeping quietly and not in some weird position or flung all over the place, shirt all scrunched up to my neck or whatever.

Anyhow, those are our digs as of now. Lovin the comments. Thanks so much for all your support.

And so it goes...

2009-07-05T05:18:00.000-07:00

As you can see, my little butterfly got to enjoy her fireworks last night. It was her one concern. Not that she got her colon removed, not that she has a fever, not that her heart rate is too fast, not that she has pain with every movement. Nope, she was worried she'd miss the fireworks! So, we flipped on PBS and watched the over our Nations capital. It was wonderful to watch them while listening to the sounds of the symphony.

Some of our picture looks better today. We have pain under control with some additional meds, temps are down with the help of meds too. A few labs have improved and others have gotten worse. A little of this and a little of that, but overall we are on the road and moving the right direction.

Day 3

2009-07-04T11:25:00.000-07:00

Ahhh, sweet sleep! I think I got 5 straight hours of sleep last night. It was fabulous!

Today is a day of pain issues for my Butterfly, but our dear Dr G is on top of things. While she is sleeping I've working on getting myself further addicted to facebook. I can sit here at the foot of her bed with my laptop and be here the moment she moves or opens her eyes, but still be putzing around.

We gave the Butterfly a unit of blood this morning so that's helped a lot of her perfusion issues and she's continuing to battle her temp, but one of the pain meds we use also helps lower her temp so we have it down to 100.2 and are pretty happy there. We'll see how that goes. No one is making promises, but the docs seem happy with where we are, but guarded as far as her infection status. Time will tell and at least she is no sicker than yesterday.

We did get to give her a little sponge bath and she is decked out in her Red, White, and Blue...necklaces, hairbows, t-shirt, the works.

Day 2

2009-07-03T12:48:00.000-07:00

I really wish people would be on the same page. So frustrating to hear 15 points of view.

Today she's dealing with high temps, high heart rates, and low blood pressures. She'll still wake up and talk to you though so that in itself is so wonderful. Felt bad this morning since we had to change her bed, she had to move and was hurting, but now is dry and comfy which is nice.

Hated when she woke, felt her belly, and looked at me with sadness. She says she doesn't like her new belly. She won't look at it other than to feel it. I know in time it will be OK, just feel I've betrayed her in some way. I know I haven't, but hate to see her look at me that way.

Tomorrow our trusty doc is back, things will improve from there. We have wonderful nurses. They love her dearly, they look out for her....... couldn't ask for anything more.

The Big Day

2009-07-02T07:40:00.000-07:00

It's been a long morning. Up since 4am. Surgery came at 7. She came down and I got the call that they started at 9:30. She was asleep at 7:30 per anesthesia when she came down to the OR so I always wonder what they heck they are doing for 2 hours to get ready. I'm sure it is all important and I'm glad they do their best to care for her. Just stressful none the less. Hoping for another update in 2 hours and maybe being done by early afternoon. Guess time will tell. Testing in the OR yesterday showed we had to do more of a surgery than anticipated as she can't be reconnected and will need an ostomy. Not all together bad, just different and a learning curve.

She, of course, was full of spunk and spirit last night. Professing to be an owl and therefore not needing to sleep! Wonderful nurse though so I slept regardless, a few hours anyhow. Thanks for all the notes, prayers, and support.

It's a wild, wild journey we are on.

Quick Update

2009-06-28T07:56:00.000-07:00

Well the place we are staying has very spotty internet at best so I'm not sure how much blogging I'll do before she's admitted on Wednesday. Basically I have to lean out the window and hold on with my ankles to get any kind of internet and then I'm lucky if it lasts for more than 5 minutes! Oh well, I promise to catch up on all my bloggy buddies and comment when I get a better connection Wednesday.

Anyhow, we are in town and getting ready for the big day. This weekend has been our own time and we went to see the movie "UP" yesterday which I have to admit I love the dogs so much I wanted to run right out and get a puppy! It was a really cute movie. I wanted to see My Sister's Keeper, but Butterfly was opposed so I had to put that one on hold for now. Hopefully it won't be as disappointing as the Secret Life of Bees was to the readers of the books.

Tomorrow we start back at the clinic and then will be admitted on Wednesday through outpatient. She actually goes to the OR Wednesday and Thursday with Thursday being her big surgery. We are both getting nervous about the whole deal. Big changes, but hopefully this is the answer to helping her get some relief to this pain.

And there was Foof!

2009-06-21T11:26:00.000-07:00

I know it's been a week, but it's been rather rough around here. Nothing to blog about that isn't the same old day in and day out of life and frankly I don't really have the energy. I do have to share though how blessed out week has been.

Butterfly is having lots of pain these days. Can't seem to ever bet comfortable and I continue to try and change her position and keep her moving form couch, to bed, to bean bag and wherever just for a change of scenery and a change of pressure on her skinny little self. What I've wanted more than anything is to be able to get her a LovSac. I've looked, I've tried, I've drooled, I've realized I don't and never will have the hundred's of dollars required to purchase said Sac. I then checked overstock which had them, but they were still way out of my price range, I found Foof bags which are basically the same things, but online only. They were still a few hundred dollars, but cheaper than the others. So, basically, I just looked at them and dreamed about how great this would be for the Butterfly. This is where I forget why I can't just remember to rely on God. Everytime I've really wanted needed/wanted something he's come through. Our needs are ALWAYS met and most of our wants are met one way or another. I don't know how many times I've wanted a new pair of capri's or shirt and gone to the thrift store and found just what I'm looking for for a dollar or two. How many times I've though about how much she'd enjoy a movie or DS game and found it at a rummage sale..... well, yesterday I had a nurse and therefore was able to go out rummaging and pulled over at the first sale I saw. I walked in the garage and right there in front of me was a Foof Bag! Yes, a genuine foof bag in excellent shape and not only that, it was bright pink with lime green piping which is exactly what I would have ordered. Best part??? FIVE DOLLARS!!!!! God is Good. I know it may sound small to many of you, but he works in mysterious ways and no, we didn't "need" this, but He cares about the little things too.

Sunday

2009-06-14T04:17:00.000-07:00

Ahhhhh.... sleeping on a chair bed. Nothing quite compares to it.

I guess I need to get back to my hospital diet of motrin and mountain dew. Seems to be the best I've up up with to combat the chair bed blues. Thing is... it leads to the need to also add tums to the diet since the motrin and dew seem to burn a hole right in the stomach. Oh the joys of hospital living.

There truly are joys though.... peanut butter cup cookies from the cafe (big huge chucks of peanut butter cup in a peanut butter cookie), hot showers in the parent lounge where you can't hear your child or anyone's child for that matter, a washer and dryer since you got stuck here with only 2 days worth of clothes so you have to wash nightly in order to have something to wear, and most of all a stash of candy the nurse snuck to you a few days ago that has not only fueled you through the weekend, but given you a pretty good sugar high to just forget totally where you even are. Oh, I forgot. I love that I can nap without having to set an alarm for every 15-30 minutes to changed medication. I took a long afternoon nap yesterday when we had a nurse we trust and love and she made sure no one and no thing woke me at all! It was heavenly.

On the Butterfly front I think we are improving. We should head home early this week and then return as planned in July for her surgery. She has a highly resistant staph infection so no one wants the risk of doing surgery before we get this cleared and under control. Cleared in actually generous as it's an infection you can't really "clear" from your body and will require her to remain in isolation from here on out, each hospital stay. We have dealt with this as an active infection before and gotten rid of it so I'm praying we do so again and save this line that is so precious to her survival.

She's still having lots of pain, lots of lethargy, and not much strength or energy, but there are all things we can work on at home.

Club Med

2009-06-10T16:10:00.000-07:00

Well, three hours in the ER and many doctors visits later we are in the PICU. Electrolytes are abnormal, she's lethargic, bleeding, and was dehydrated. Funny on the dehydration since she gets 200cc/hr of fluids 24/7. That's just under 7 ounces an hour. So, anyhow, we have no real clue what is going on except they slapped her in "super-duper" isolation (my term, not theirs) which means I can't leave the room without mask, etc. They can't come in without gown, mask, goggles and I can not go in any area of the hospital such as the cafeteria, just out to my car. Well, hello, how convenient is that?

Hoping for good nursing tonight, maybe then I can catch up on some sleep!

Worrisome Wednesday

2009-06-10T06:20:00.000-07:00

Butterfly did well yesterday with her surgery. It was pretty minor. They had to dilate her stoma (hole) in her small intestine and get her tube put back in. Unlike G tubes (in the stomach) J tubes doesn't stay open quite as well when you have problems with them and tend to close easily and not stretch back out. I on the other hand had a migraine and ended my day sitting on the bathroom floor wishing I'd just die sooner than later. Good news is I'm all better today! That is excellent new considering someone else woke up with a temp, chills, and a headache so before we can head home from here we have to wait to hear from the hospital to see if we can get in with pain team and also her special needs physician. Right now she's snuggled up on the couch watching Noggin. We stayed with a friend last night who not only has Direct TV, but gets all the awesome preschool channels as part of her package and I think Butterfly could live on her couch. I have to admit, so could I. It's so quiet here, surrounded by trees. No one is home, but the two of us, you can't hear cars or any street noise and since I've been looking out the window I've seen squirrels, chipmunk, baby birds (the nest is right there by the window--I'm starting to wonder what it is about me and baby birds), and a fawn.

Anyhow, we sit and wait for out day to be determined. I've tried to motivate the Butterfly into feeling well (interpret: pepping up so we can just go home! and no one makes us stay) by a promised trip to Build A Bear-"no", Disney Store-"no", Libby Lu-"no", and Discovery Store-"no, and quit asking me". Needless to say, I'm not guessing a trip back home is in our future today.

Saturday Finds

2009-06-06T13:03:00.000-07:00

In an effort to further avoid the tightrope we are walking I thought I'd share with you my Saturday finds....

First, as I was taking blood into the hospital for labs anyhow I figured I'd make good use of the time and hit a garage sale or two. I'm so glad I did as I found this for Butterfly's room.

Then, upon returning home I entered my room to find not only has Pookie Cat discovered the top bunk (yes, I sleep in the top bunk of bunk beds--I never dreamed at my age I'd be sleeping in bunks!). Not only that, he apparently figured out how to cover himself up too!

After settling the Butterfly in and making sure she was as comfortable as possible (which is not actually very comfortable anymore) I ran out to get the mail, almost stepping on this little guy. His mother was watching and warning me from a tree nearby so I'm hoping she at least was able to get him under a nearby bush for safety sake.

In an effort to further avoid the tightrope we are walking I thought

When I came back in with the mail just minutes later, I found this. If you look closely at her hand she is holding the strap to a tote bag. I've realized since Butterfly came into my life how people actually become bag ladies and what drives them. I'm so not kidding. She is a bag lady through and through. The brain has to be the driving force behind it and not necessity because she can't sleep, walk, travel, watch TV, or function without at least one bag of "stuff" at her side. Of course as her OCD gets worse she'd prefer this bag be padlocked to her while she's asleep since she fears it will disappear on her, but that's a story for another day.

On the medical front for those of you wondering things are not good here at all. We are heading back to Club Med early in the week for an urgent surgery trying to get us though until her big surgery in July. Pain right now is pretty all consuming and is both a day and night thing. Her labs are on the border and although we are trying to keep her home for the weekend, I've already had two offers to admit her and if I thought it would change something I'd do so, but right now we are doing all we can right here in the comfort of home.

Slip N Slide Anyone?

2009-06-05T18:40:00.000-07:00

Intoxicated woman strips and tries to Slip and Slide.... That was one of the top stories in our local paper today. Seriously, are we that hard up for news? Or even more so, was she that hard up for summer entertainment? Seems there was this lady who had a few too many and stripped down, jumped the fence and tried to slip n slide with her 5 year old neighbor boy wearing only a thong and her bra, she then ran across the street and tore a bed sheet off their clothesline and in a sudden moment of modesty wrapped herself in it! That poor child is either going to need counseling or he'll be the most popular kid in the Kindergarden on Monday.

Survival

2009-06-03T10:54:00.000-07:00

We survived out trip and although it was very hard on her I'm glad it's over with. She's sleeping on the couch today and hopefully can just sleep thought the pain she's having until we get better management in place.

I don't really have much else say, it's just not been a great week here. Everything else seems so senseless to me and adding to this post seems to only do injustice to how crummy things are today. I don't mean to go on about it or dwell on what just is, but it does get discouraging to day after day see how hard she pushes herself with little relief and little actual childhood taking place.

Tomorrow will dawn new again though, brighter and fresh. I'm sure we'll awake again ready to take on the world and see things from a new perspective so until then...

Unwell

2009-06-01T18:36:00.000-07:00

This has not been a good couple of days... if it hasn't been one thing it's another.

Saturday night Butterfly's J-tube ( a tube in her small intestine) came out and will not go back in. The doctor was kind enough to let us avoid a late night ER visit and agreed we could see the surgeon early tomorrow to see about getting a tube back in. Until then we have a smaller catheter threaded into the stoma trying to hold the opening open. It is bleeding and driving her crazy so I'm hoping all goes well tomorrow and we can get something in there. If not we'll have to surgically repair it with her surgery in July.

Yesterday she started to develop a rash. Not sure what it is, but we are watching it and now that she's running a fever we had to do blood cultures and wait to see what happens with those. If they grow anything we'll need to head into Club Med again.

She's also having 2-3 very severe bloody noses a day and a couple during the night too. We packed her nose this evening and we'll see how that works to get through the night.

To add to it all she is very distended and miserable so every day she just wants to lay there and not do much of anything. One of those times you just feel like you aren't doing your job as a mama unless you can make things better. I hate not being able to help her feel better, nothing we seem to do helps her.

Tomorrow we'll make the round trip to Club Med and hopefully get some relief on the tube issue. We have a summer of things to complete and fun to be had... like she always tells me, "Mama, lets get going, I have goals!" If only I could be so strong.

Butterfly's New Nest

2009-05-30T14:32:00.000-07:00

I've been busy at rummage sales the past couple of mornings and was thrilled to find a really cute set of shears for the Butterfly. I'd been wanting to make her one of those canopy things for her bed, but after the nights we've been having I thought better of it. I still wanted to do something with a canopy to give her a place of respite to look at her books and have a place of her very own to take shelter from the constant barrage of insults her body goes through daily. So, I took the shears, a large needlepoint hoop, some paint and some little clips I also found at a different rummage sale and came up with

this....

and this....

which in turn ended us up with this....

The cushion was from Christmas and the blanket was made by her nurse for her birthday so we had those on hand already too!

It's always fun to come up with new ways to transform her world since she spends so much time in the house. She's really enjoyed this this afternoon and and I'm hoping it will remain a good motivation to get out of bed each day even if only for a few hours.

We found out surgery won't be until July 17 since they need a full surgical day for her and no other surgeries scheduled for her surgeon at that time. Hoping and praying she can maintain some comfort until then.

Hula Hoop

2009-05-28T19:59:00.000-07:00

So, we've begun working on the list. We have the hula hoop and it's a hit. On Monday, I took Butterfly and her friend to the park and although she lasted less than an hour she had a blast!

I've promised to work on her fairy garden this weekend so hopefully she'll be feeling up to it. She's really looking forward to getting it looking nice again.

Summer Fun

2009-05-27T18:32:00.000-07:00

Butterfly has come up with her annual list of things she'd like to do over the summer months. Last year as you may remember it included taking her picture with 30+ herons around our area, swimming, and going to the Mall of America. This year her list is just as simple. We are taking it as easy as we can and know she needs to pace herself, yet also know once she has her surgery it may be the end of "summer fun" for her for this year so we've started early this year. In fact, my writing this list here is as much for this blog post as it is for me to remember all she's asked me.

She started off very simply with a hula hoop. She just wanted a hula hoop and although she knows actually using this hula hoop in the traditional way is not an option with her tubes and lines, she just wanted one. Enough said. Well, who am I to say to have fun with a hula hoop you have to swirl the thing around you waist and wiggle in middle to keep it going? Besides, as a kid my hula hoop served many a purpose and I don't recall it was used often as an actual hula hoop either. Any how, item number one... check! We have a hula hoop and I much say, it was every bit as exciting to her as she anticipated. She actually likes to just sit in the middle of the hoop and pretend she's in a glass bubble, oh, and throw things through the hoop.

Second on her list is fly as much as possible. Well, if you haven't figured it out. That's how she became my butterfly. She loves to fly and so far we've put on the wings and let her fly once and I'm sure she'll be out flying many more times.

Third she has plans to cross our Cass Street Bridge over the Mississippi in her wheelchair and me on foot. She's always wanted to do this ever since we first saw there was a sidewalk up there next to the road.

Fourth is to go to a water park. Well, this is technically a big No-No with her line and such, but we are working on it and it WILL happen. Sometimes Quality of Life needs to supersede a few other things.

Fifth on her list is to finish her fairy garden. The good news is we are in progress on this project and just need to add some flowers and sparkle to attract the fairies back and we'll be set there too.

Sixth is ride a motorcycle. I'm still looking for someone with a sidecar to take her around the block. Have not a clue where she came up with this.

Seventh is to go fishing. I HATE to fish, but we'll be fishing none the less.

Eighth she wants to visit the butterfly habitat

Ninth she'd like to go down her river, The Mississippi.

Tenth is a trip to the beach. Again, sort of a No-No, but again Quality of Life trumps that and we have permission to do so with extreme care and no swimming. We can handle that.

I'm sure we'll head up to Mall of America again just because it's close and she likes it too if we can squeeze in the time and also hit the National Eagle Center. She loves birds so much.

So that's our summer in a very large nutshell. Say tuned to see how it all works out. So far we've pretty much just ventured from the bedroom to the living room and back again. We'll get there though!

And now I know...

2009-05-26T11:00:00.000-07:00

So, lately the cat, Pookie, well...... he's been doing lots of this.........

While it IS typical cat behavior I couldn't figure out why he'd chose that over the more popular daily activity of this.......

Then, I went outside to the bush under the window and found this......