DAY 100--NATALIE

Today was a GOOD DAY!!

Hooray for Natalie--Today is Day plus 100! We can't believe that it has been 100 days since Natalie's transplant. We never did post her Transplant Birthday Video, so in memory of her Transplant here is the video.

The second video is of Blair shortly after he left the operating room, he had told us moments before we took this video that if he wanted a drink he would give us a thumbs up and a thumbs down if he didn't want anything. And to clarify, McKay is his cousin.

Originally when we spoke with the dietitian about the girls diet, the general rule is that by 100 days they can come off the low microbial diet. This means they can have restaurant food etc. Still they need to be careful and that which they do eat from restaurants must be freshly made.

Natalie has known that 100 days is a milestone, and so she has been counting down. In her mind we were going to celebrate by going through the Wendy's drive-thru. I warned her that we needed to double check with the doctors before we did so. I called them, left a message, and the next 30 minutes she waited by the phone. When the BMT clinic returned our call they asked what the question or concern was...I was happy to say we were not calling to report a fever, just a request for a hamburger.

The answer was not yet. Oh how upset Natalie was. She stormed off to her room and griped about how mad she was that it's finally 100 days and she still can't eat what she wants. I tired to explain to her that a homemade burger is much better. The truth is when you know you can't have something it almost makes you want it more. We hardly eat out anyway, however, maybe that is why it seems like such an exciting thing to begin with.

We decided to celebrate by getting a movie from Redbox. We watched The Adventures of TinTin, and Natalie really liked it. We did some art with colored pencils, that can be changed to water colors. The boys made the number 100 out of play dough for Natalie. Natalie also was able to spend time with Grandmother Fish putting together some things for Easter. She ended up having a much better day than she had suspected in the end.






Today was a great day for all of us.

Lisy

We are looking forward to watching conference together!

Super Heros

I tried something new today with Alice, an attempt to learn from my mistakes of yesterday. Yesterday wasn't our best day, I tried three different times to give Alice a nap. She was very tired, however, wasn't excited about taking a nap. I offered to lay by Alice until she fell asleep. Tyler looked at me like...yeah right! He must have known that disaster was calling. Each time I tired to lay next to her I feel asleep and she ran away. Once, I woke to her giving me a stuffed animal to sleep with; she then came with a diaper, wipes, and A&D ointment to change my diaper. I thought to myself, well that didn't go over very well. I decided to quit trying, peel myself out of my p.j.'s (thinking I had a good excuse to stay in them as I was going to lay with her anyway) and just take her for a drive in the car. That always works. So today, the new thing was, I took her for a car ride first and our day was much nicer. She wasn't as cranky and everyone was happier.

When I came home from our drive, Tyler had the others fast at work with their school assignments. While Natalie and Matthew are doing their Math and Spelling, Blair sneaks onto their RazKids website and buys things with all the points they have earned reading the books. Natalie keeps after him, because the items he purchases are downgrades from what she already had. I have a hard time being serious about it because for some reason I see a glimmer of humor in it, I guess the saying of one person's trash is another person's treasure seems to apply, especially to the children.

Natalie told Blair today that he needs to do things for himself and not keep asking her to get him things--he said, "I don't have the right brain for that...it's the wrong one." I happened to only over hear his answer, I quickly stepped in to see what the fuss was about. I was surprised to learn of their conversation. I tried to help Blair understand that his brain is very good and we just need to teach it some tricks about being more independent. I tend to think his brain is the right one, and that he just needs to have a little more fire under his feet. It takes some great amounts of creativity to motivate Blair with things that seem boring to him.

Once Tyler needed Blair to carry a box down the stairs, so he asked him to help. No response from Blair, it seemed as though it went in one ear and out the other. Tyler proceeded to explain to Blair that the box was full of explosives and if he didn't get the box downstairs to safety in 30 seconds it would explode and create a great deal of disaster. He jumped right up to fulfill the assignment.

Parenting one child can be a challenge, however, no two children are alike--to find what works for each is an art only to be mastered over time.

As parents we are learning new things each day. By the time our children are grown we might have some great tricks under our belts.

The past couple weeks Alice has been asking to watch Superman, not sure why...she talks about it all the time. We watched it a week ago to satisfy Alice's desire and then a few days later the children received some darling capes in the mail. Wow, great timing. Tyler played the Superman soundtrack as they strapped on their capes and they loved it. I'm so glad I got some pictures. The children have been flying all over the house since.
Alice thinks if she blows air with her mouth she is actually flying. I had to catch a video of her with the cape. It is cute when she runs--in her mind she is going very fast I'm sure.

I forgot to mention on Monday's post that Natalie's fluids at night no longer have Magnesium. Alice has done well the past couple of days without taking Zofran. She has kept all her medications down without the assistance of Zofran. This is a big step for her.

Lisy







Super Evie!!

A good Day for a Hike

Matthew has been asking to go on a hike for weeks, we finally decided to round up the baby packs and head up to the hills. The doctors had given the ok for us to do so if the conditions were right. So we cleaned up, steralized and masked the girls. The trail we took is only a few minutes from the house and was the perfect little hike for the kids.

It was beautiful, Tyler was able to look over the hill to his old house in Alpine where he grew up. The kids enjoyed the scenery, especially the big horn sheep. It was hard to hold back the urge to sing out "The hills are alive with the sound of music". Had I actually done that I would have scared every living thing off the hill. I hope someday, maybe in heaven, I will have a beautiful singing voice...hmm maybe not!

Natalie did well, she became tired easily, although, she did awesome for having recently been through so much. Alice was carried the whole time, but every once in a while she would pant like she was hiking with the rest of us. She played the part very well.

I would say the hike was the highlight of our day...and possibly week!

Clinic and Gone Fishing

Here are some pictures of our clinic visit.





At Clinic today, we found that the girls numbers are steady, Natalie's ANC was 1600 and Alice's was 1400 and heading in the right direction. They both received their IVIG med, which took most of the day. Natalie got a dressing change and an x-ray on her elbow--she has a bump on her left elbow and so we are just being careful...nothing came of it. Tonight I filmed Alice fishing with her medicine, something she loves to do. I'm not sure why, but the sound didn't work on this.

Improvment comes over time

As of yesterday (Friday) we have been home together for three weeks. When I think back to the beginning of Natalie's Bone Marrow journey about 5 months ago, it seems so far away. I can't believe we have come this far. Often I will try to measure the girls' progress each day, however, on a daily basis sometimes I wonder if they are in fact actually progressing. I decided to compare today with the first week Alice came home. Huge improvements just in the past three weeks. It's amazing the changes that have happened in the last several weeks. It's almost hard for me to remember the miserable times we endured, because there is very little evidence of pain when I see both Natalie and Alice thriving today.

Last night I had the opportunity to speak at a dinner held at the hospital. It was sweet to be there. I will always have a huge place in my heart for Primary Children's Hospital. Of course we have had very trying times there, but for some reason when I walk those halls I feel this amazing overall sense of peace and gratitude. I think I can say from experience that angels walk there. If I were an angel you would find me at a children's hospital too.

During my speech I mentioned that Tyler and I have been through some very hard trials with our girls. I also mentioned that having two girls undergo bone marrow transplant within 4 weeks of each other has not been the hardest thing we have done. What I mean is, the support, and prayers that have been poured upon our family have carried us. Sometimes I wondered if my feet were actually touching the ground. I know that strength comes in numbers. We are so thankful for the prayers being offered...the power of prayer in my mind is ever so tangible. It's easy to look upward when you have so many cheering you on. I know that the girls feel the same way.

Natalie wrote a note for her friend Sara whom she had met during transplant. Sara is on her third round of Chemo battling leukemia; I was to deliver the note to her room. I have been so touched by the strength and courage Sara has shown to Natalie. Sara rides her scooter around the unit waving to other patients through their windows...again, another memory that will be with me forever. Right now Sara may not be feeling well enough to ride her scooter, but I know she will soon.

As I was leaving the hospital that evening I felt strange to be there alone without one of our girls, but I had a moment to look at the building from another perspective and wonder what might be occurring in each patient's room. I also watched the life flight helicopter carrying a little body, land on the roof. I paused before driving away and offered a little prayer in my heart for that little person, and the many other little people behind each patient window. I know prayer is real and powerful, I sensed in my heart that my prayer was embraced.

Often I feel like a tiny little speck on this giant planet, but when I imagine looking at the earth from a point in space I can see things enlarged and they become more clearer. I understand that what matters most is not the destination, but the journey. Because the destination can only be determined by the journey.

Thank you to all our loving family and friends, and the many people we have not met. :)

Lisy

Situps and Cook Books

I made the mistake yesterday thinking that I could do a stomach workout. This morning I woke up needing help out of bed. All day,I walked around as if I was in need of a cane . Each time I picked up the baby, a small yelp escaped. It would in turn startle Evie, and then she would start to cry. We both cried. We cried so much it was like we were trying to out cry each other. I won. It was a rough day. Oh how youth seems to be so long ago now; when we could play all day and wake up the next morning and play all day again without the pain of a recovering body.





Alice was cute....I hooked her up to her IV line tonight with with her medicine ball. She through it over the side of the bed and said, "Look Dad, I'm fishing." I quickly grabbed a hold of the line and gave it a little tug, her eyes lit up and she pulled it in.

Natalie is anxiously waiting to be able to go out and eat fast food. She has been so patient, however tonight she got a whiff of Little Cesar's pizza coming from the neighbors and begged to have some. She only has a couple more weeks until she will be able to do so. We are so excited for her to get back to normal, and fast food in her mind is the first step towards it.

We have had several inquiries regarding the E-book & hard copy cookbook and where to get it.
This is the address:

http://www.lemonpoppycake.com/​2012/03/​blogging-for-fishes-buy-now.htm​l

We are so grateful to lemmonpoppycake.com for organizing this. Thank you.

In addition thank you to Tami Goeckeritz for organizing the online auction that many of you participated in. We are so grateful for your love and friendship.

Tyler

Kids Exercising

This morning Lisy and I got the urge to exercise....not much came of it but the kids got into it. However Blair and Alice had enough after a short amount of time...just like their Dad.


Alice is gaining more strength and was in the mood to show us how well she could walk. It was cute when she showed us how she can run too....Lisy got it on video.



Throughout the day, I reflected on the feelings of gratefulness I have for the love and support all of you have given us. I will always pause when I think about how all of you made a life changing event, that could have been "back breaking," into an experience we will no doubt look back upon now as being one of the greatest moments in our lives. Your examples to us have further instilled the desire to be better. We will forever be thankful to your rescue.

Tyler

Clinic Visit and Counts are Up!

It was a challenge to get both girls to look at the camera at the same time.

Natalie and Alice had a clinic visit today and we received great news. Both girls are doing much better than last week. Alice's ANC is at 3000 and Natalie's is 1000. The booster shot they gave Alice last week really made a difference, however, with Natalie she came up 400 points without any help. Natalie is able to come off a medication that helps with liver function (Actigall). Alice is able to come off a medication that helps with stomach function (Reglan). Alice's steroid will taper down another step. Both girls will bump up a step with their anti-rejection medication (Cyclosporine). It is very normal to go up and down many times with the Cyclosporine.

Natalie is only two weeks from her 100 day mark. She keeps asking when she can have a hamburger from Wendy's or something like it. I suppose just because she has not been able to eat fast food or any restaurant food it makes her wish for it more. Once she is able to drink the full amount of her fluids daily and maintains stable counts she will no longer need the Broviac line. Although, she may not have a line in the near future, there are yet many blood draws to come...at least for six more years.

Alice's line is repaired and working wonderfully, another tender mercy. It is common for a line to clot when broken, however, Alice's did not. It would have been a bigger deal to fix had it clotted. We stayed at the hospital only 2 1/2 hours and were home by 2:30 a.m. Not too bad!!
In fact she did not want to leave...she was ready to stay for a while apparently. Upon arriving she asked for a pillow, crackers and cheese, and the Backyardigans; a version only the hospital has. When it was time to go home she was sad, of course until the nurse gave her the Backyardigans movie to keep. I told her we needed to hurry home to show it to Dad...that was the ticket, she then cooperated to put on her coat and mask to make the late night drive back home.




Tyler and I received a letter in the mail today from the CEO of the American Red Cross (Lewis & Clark Region).

Here is what it said:

"I want to express my sincere thanks to you all for your support of the American Red Cross. Through your efforts 475 donors came to donate including 145 first time donors. Your situation has touched the hearts and lives of many others and is a true example of the Circle of Life."

We are not to receive this gratitude alone. It is because of many sweet and amazing people who came to donate that made this happen. Thank you to all who helped organize the blood drives and especially for our sweet friend Wendy who put forth much time into this endeavor. We also want to thank the many people who came to donate and were not able to due to time. It's very humbling to imagine the great blessings that will come to those who will benefit from the blood drives, including our girls.

Lisy

Broviac Snap

Just now, Lisy is on her way to the hospital with Alice due to her broviac line snapping. The result of the break was due to Lisy picking Alice up and the line being caught in the couch. I wish it could have waited to be fixed tomorrow, but the doctor said to come in right away to have it mended. We put a clamp on it and away they went. I imagine it will be a long night for them both, but I expect them to be back in the early morning hours. Alice was cute as she became excited when we told her that she would be going back to the hospital tonight. She said,"Dad, I go home." Wow....we were really at the hospital too long.

The way the line broke was mild compared to what could have happened. Luckily when Lisy and I changed her dressing last we secured the line tightly, which possibly prevented it from pulling entirely from her chest. At first we called the homecare nurse and they told us to go straight to the ER. Because Alice is a Bone Marrow patient we are not to be caught anywhere near the ER to avoid the risk of exposure to illness, so Lisy called the on-call BMT doctor and it was arranged to go straight to the ICS unit where the IV team could repair the line.

This morning, all the kids could talk about was the leprechaun trap they were going to make. Matthew was on my case about it all day. He opted for "ye 'ol box and bait rabbit trap." A true and tested method for sure. Instead of a carrot he placed chocolate coins. We'll see if it is successful tomorrow morning.



My brother Michael. the Leprechaun

Alice was into headbands today. She saw a lock of hair we had saved and tried to put it back on her head. Then she asked to wear a bow, so Lisy showed her the stash of headbands and bows...she had a great time decorating herself.

A Good Day

Well it happened, we finally feel like we found some rhythm in our routine. I woke up tired from another long night, but I promised myself I wasn't going to nap or feel sleepy, until I accomplished the many things I've had on my list. I love to work, and lately I've only had time to care for the children every moment day and night. Although taking care of the kids is first priority, it does feel good to get stuff done so that I can feel productive. I know my enthusiasm sounds as if I invented something ground breaking, but I actually just organized the toys and clothes and the usual meds. Believe it or not, this is a big task for us right now. :) Grandpa Fish came and helped a lot in the garage and helped sterilize bathrooms, etc.

Too often I dream that I can stop the clock and have more time to do things...I would work myself to death I'm certain--Although I would spend many hours just writing thank you cards to so many. I know it's not necessarily possible but in our hearts please know we have many lines that can't make it to paper...let alone the post.

Tonight when I took another stinky diaper to the trash, the can was already to the street; (hooray we are not going to forget the trash this week) Once outside in the dark I stopped for a moment to take in a deep breath and looked upward. Wow, I noticed one star in particular much brighter than the rest and I immediately got the chills. I usually do every time I stop to admire the heavens above. However, this time it felt different. It's amazing what we live under, I always try to imagine that I can see for thousands of miles into space...I wanted to be an astronomer as a kid, as well as a marine biologist, an olympic gymnast and even the president of the United States, well I think I currently have the best career anyway.

One of the neatest things I've done was to look through by brother's telescope to see with my own eye Saturn's rings. Woah! I remember the days as a kid when we spent more time outside than inside. Just because the sun went to bed did not mean that we had to, things may have been a little different then, but it wasn't unusual for us to sneak blankets out to the trampoline after my parents went to bed so we could sleep under the stars. Maybe life has become too busy for things like that, but hopefully not. Maybe someday Tyler and I can take the kids camping and such without worrying about getting sick.

When I saw the sky I thought of this quote, so I wanted to share it. "As truly as we must face unpleasant realities all of our days, let us recognize and praise the thousands of beauties of life around us." --Paul H. Dunn

Okay, so I will now give an update on the girls. Alice is no longer crawling...doggie days are over. She is walking everywhere and it is wonderful. She will be able to drop another medication now that her body is moving more. She wants Mom all the time...if someone stands between us she will cry that she can't see Mom anymore. We are hooked at the hip day and night. We were worried that she was getting a fever the other day, but nothing came of it. She has been extra fussy so we are watching her closely. I think she is feeling better but at the same time becoming aware of how much more she still needs to heal.
Tyler and I had to change her dressing early (it's only been a couple days) because it started to peel off. She was not happy about that. We are getting better at this dressing change thing; as long as we have back up supplies for all our mistakes...we are good.
Make A Wish called today--Ann Marie ;) The girls have their keys from Make A Wish and they are protecting them for the day they will unlock their wishes. Oh what a beautiful time that will be for Natalie and Alice.

Natalie has been having a great time filming herself being silly on her iPad. She then shows the videos to Alice and the two laugh and laugh. Natalie took her notebook with her today on a bike ride and decided to draw pictures of everything she saw. She had all kinds of things in her little notebook, later I found out that she wanted a flash light to shine into a dark tunnel so she could draw some spiders. I was so glad she couldn't find a flashlight...too many germs in that tunnel.

Here is a video of Alice eating a banana...had to get it on film-before transplant she would not touch a banana, now she wants them all day long.

Lisy

P.S. One bright little star gets me so excited....does this mean we have been in quarantine too long?