Friday, May 29, 2009
Tuesday, May 26, 2009
We're not going to let it get us down. It is just another climb upward on the roller coaster right?
The good news is that she maintained her weight at 18.2 kilograms which means she is eating something.
Dr. Boyer said, "I am beginning to think her appetite struggles don't have anything to do with the transplant."
This struck Matt and I as very funny since we have been trying to tell them that all the SCID patients we are in contact with, have the same issue!
The plan is the same, we will just wait and see if her counts go up when she is off the Cyclosporin. If not, they will go in and take a look at her bone marrow to see what is going on.
I asked what would happen if they just stayed this way and the Dr. Boyer said it wouldn't be a successful transplant. He said that usually they can tell what's going on when they test the bone marrow. Oh yea, and that we may not really know for another YEAR!!!
I also asked about going back to church. His reply was, "It is too early for that now, maybe at the end of summer...well, no, August has a lot of virus's going around...maybe early fall...oh, but not in the winter!"????
Don't you love it? Don't worry, I didn't tell him about all the places I have been taking her, including church this last Sunday to hear Jacqueline give a talk! She walked in with her mask but took it off during the meeting...I know, I am bad! I guess we will keep to the Relief Society room where we sit listening through the intercom. It has been really good to get her used to going back to church...she actually didn't complain last Sunday when she had to get ready! (BIG IMPROVEMENT!)
So, there's your update, not much different but at least things aren't any worse!
As we left Primary's Emily through a penny in the wish pond saying that she was wishing for summer to come very soon! I have a feeling this wish will come true :)
Sunday, May 24, 2009
The first outside meet of the season... Doesn't it look WARM? It was a PERFECT day for a swim! Ha Ha
Thomas did a great job and took seconds off each event! As he put it, "I smoked em!" In his heat of course :) Jac took great pictures since I was only there for the 1st event.
Why not do two crazy things in one week? Friday was field day and I let Emily go! As you can see, after making sure everyone in her class was healthy, she didn't even wear her mask!
For 2 hours she hung out with her class playing games and getting to know her classmates whom she has only seen a handful of times. I walked around just watching, and of course giving the occasional squirt of hand cleaner. Emily had the time of her life! She was so happy to be FREE and do what other kids her age are doing.
One of Emily's biggest highlights was getting to have a SNOW CONE! She has been begging me for one all winter. Sorry, SNOWIES are only around in the summer!
"Mom, this must mean it's SUMMER" Emily screamed when she saw them.
Can you guess what flavor she had? She actually got spoiled and got to have a second one when the kids were playing a very wet game with sponges. (Not a good combination for hearing aids and a central line.) Em didn't mind a bit having to sit that one out! mmm...anyone want a snowie? Please take Emily along :)
At the end of field day the early birds went home and the later gators stayed for another hour. Emily wanted to stay so, shh...don't tell the doctors...I let her! I even went home and came back to get her!
Everyone I saw said things like, "Oh, she must be doing so good to be here!" WELL, not really, but I've got a rebellious streak going. Why not enjoy it right?
Maybe if we ACT like her body is strong and healthy, it might actually happen!
I don't think I am going off the deep end. I am trying to be careful, but at the same time trying to let her live a little too; since it's so close to summer and less sicknesses in the air.
I am not so sure the Doctors would agree with me quite yet but hey, maybe this Tuesday our ACTING like she's healthy will pay off with GREAT COUNTS!
Friday, May 22, 2009
Thomas' 4th grade class went on a field trip to the Children's Discovery Museum at the Gateway. Mrs. Rivera called to invite me and Emily to come along.
Probably not the smartest thing to do, but it's the end of the school year...why not take a few risks here and there? Right??
Emily was so excited to be with her big brother. He always makes life more fun!
As you can see, Emily and Thomas had a wonderful time! The whole class was so sweet to Emily. There were some girls that did everything they could to make sure Emily was having a good time!
I just stood by and watched and squirted Emily's hands about every 5 minutes!
The field trip was a success! I am so glad we went. It was a great reminder of what we are working so hard to achieve...a worry free life of just being a kid!
Thank you Mrs. Rivera for letting us have a moment of "normal"!
Sunday, May 17, 2009
One of our FAVORITE family activities is HIKING! Well, for me and Matt anyway :)
We prepped the kids early in the week that we would be hiking on Saturday so they would be prepared. Jacqueline has actually grown to really enjoy these 'adventures'. Thomas and Emily need a little coaxing but by the time they get up there they usually have a good time.
We wanted to start the season out with a quick EASY hike. One that the kids would say, "That was fun! Let's go next week!"
We went up to Timberlake and TRIED to do a big loop around the mountain. What started out as an easy hike turned into 2 1/2 hrs of 80% up hill, with mudd, water and snow on the trail!!! I am NOT exagerating! I kept thinking we would be going down hill anytime so we just kept on hiking.
After 2 1/2 hrs, all we could see was UP. The picture of Thomas is the point where we decided to turn around and come back, you can't tell but it was all UPHILL!
It only took about 1 1/2 hrs. to get down :) My knee was hating me by the end, Matt's back was sore from carrying Emily through the tricky spots, our shoes were very muddy, Leo was now a black doggy but we had FUN!!!
I can honestly say that it was a great day being alone together, listening to the kids singing and talking as they hiked. We only saw a few stray hikers along the way...I wonder why?
Last year the kids went hiking with Grandma and Grandpa Whiting thinking they would be gone for about an hour. 6 hours later we picked them up!(you'll have to ask Grandpa what happened) We have had great laughs about that one.:) I told the kids we need to make memories like these atleast once a year. We've got ours in for this year!
Now, for convincing the kids that this won't happen next time...thats the challenge!
Thomas performed in the musical "S'Cool" this weekend with his choir group.
WOW, is all I can say! I was so impressed with his ability to really 'be' his character. He did a fantastic job...in fact the entire choir did such an amazing job. Everyone was cast perfectly, you could tell everyone wanted to be there and loved what they were doing!
Thomas had a few solos and did such a great job. He really enjoys performing and putting on the DRAMA! It was quite a treat to see!
His school teacher came to watch and told me she fully expects him to be on American Idol. I don't think I want to share him with thousands of adoring fans :) For now, I'll keep him to myself!
Friday, May 15, 2009
Summer was SO cute with Emily and she warmed up to her right away. After a little heads up from me, Summer asked Emily if she has anything she worries about. "No", Summer asked her if Mom could give some ideas and Emily reluctantly agreed.
As soon as I said the word "smoking" Emily got tears in her eyes and RAN to my lap. She did NOT want to talk about SMOKING! This has become a huge fear for her. Whenever we see someone smoking she FREAKS out, closing her eyes and shaking and screaming at me not to say that word. She is afraid it is going to hurt her, she is afraid that she will want to smoke.
Summer talked about 2 parts in our brain, the "feeling part" and the "thinking part" She explained to both of us that these two parts can't work together. Emily asked her "How can I turn on my thinking part?"
"Great question! You have to ask yourself a question. Everyone has their own brains and everyone makes their own choices." "Emily, I can tell you make good choices, do you think you would ever choose to smoke? NO WAY! That's because you make good choices!"
Summer went on to talk about 2 ways we can face our fears. One way is running away, trying to pretend it's not there, which makes the problem bigger and bigger. The other way is to face it or talk about it.
She told Emily about her fear of spiders. She told her she learned to say the word spider by saying it in a crazy voice over and over. She finally faced her fear and realized she was bigger then any spider was. She asked Emily to say the word SMOKING. Summer said it in crazy voices and Emily kept trying to but she just couldn't get it out.
Finally she did it! She screamed "SMOKING"! and then she did it again! I can't describe the look on her face and the way her body totally relaxed. She was FREE!
A few minutes later she told Summer, and her dad last night, "As soon as I said SMOKING all my fear left my body"
It was so cute because she was telling Summer how she is practicing being brave going downstairs by herself.
Summer was so impressed and told her she said the MAGIC WORD...PRACTICE! She told her that is the way to face our fears, and remember they don't go away over night.
I know Emily's anxieties aren't over but with PRACTICE, she is going to be able to FACE her fears.
I saw a renewed confidence in her yesterday that was so encouraging! I am so proud of her.I am so grateful we went and that Summer gave me tools to help not only her but all of us! It has really inspired me to take a look at my own fears, stop running from them and face them head on!
Her WBC is at 1900, ANC 700, EOS are up to 15(normal is 0-5) and her weight went from 19 kilos to 18.
THE GOOD NEWS is that along with the EOS being up her MONOS are up to 23(normal is 0-12)! What are MONOS? Great question. They are premature cells coming from the bone marrow which means that Emily's bone marrow is TRYING to work! It's just spitting out the cells too soon. "Is this normal?" I asked. The nurse looked at me and said "Emily is never NORMAL!" What was I thinking???
THE OTHER GREAT NEWS is that she LOOKS AMAZING! She has more energy then ever before. We went to the park the other day and she went across the monkey bars about 10 times! I only made it once and she said I didn't do very good!!! (Grandpa couldn't even do 1 rung! He blamed it on his shoulder..hmmm. :) ) Emily runs around, laughs, plays and dances more than ever which tells us SOMETHING must be RIGHT!
The doctors are stumped as to why this is happening but are hopeful that she will come out of it once she is off Cyclosporine which happens next month! If her counts don't go back up they will do a bone marrow test to see whats going on. SOOO, for now, we just enjoy the good days and pray her counts will catch up with her energy!
Thursday, May 14, 2009
Matt took Thomas to a REAL Soccer game. Just the GUYS! I was impressed that Matt thought to get a picture! A few days later they went on the Father and Son's camp out...Sorry, no pictures. They say it was a blast though!
These two have a great time together! Who needs pictures when you've got lots of memories? Right?!
Wednesday, May 13, 2009
What would Mothers Day be like without your kids singing sweet primary songs honoring mothers?
Rose made sure that Emily was able to sing to her mommy just like the other kids. Emily's was extra special because Brother Dixon played the guitar! It was so sweet, I loved it!
Emily gave a talk she and her Dad prepared. She was quick to say that I am NOT a perfect mother...ONLY Heavenly Mother is perfect (which is so true!) It was very sweet.
Jac shared a poem she wrote last year about her mom. I love her creativity :)
I am very blessed to have 3 great kids and a wonderful husband who did their very best to show their love and appreciation. I don't know what I would do without them!
We enjoyed having Grandma and Grandpa Whiting and the Parish's over for a very yummy BBQ to help celebrate the day. Thanks for the great conversation and great time together :)
Sometimes it is nice to be reminded of how truly great being a mom is!
Jacqueline came with me and my running buddies to run in a charity 5K on Saturday. I have actually never run in an official 5K before. It was very challenging to keep sprinting for 3 miles! OK, not really sprinting, but for ME it was :) I was SOO ready to quit!
Jacqueline came in at 19.44 taking 1st place in her age group and 2nd place out of all the women running! Leesa came in right behind her to take 1st in our age division of 30-39 year olds. Jessica took 2nd and I came in 3rd at 22.24. Stephanie would have beaten us all if it weren't for having to push her 2 kids in a stroller with a wheel that came off 3 times! She had to keep stopping to fix it, yet she STILL came in at an 8:15 pace! She is amazing!
It was so fun to have Jacqueline running with me...even though she was not really WITH me, you know what I mean! I am looking forward to many more races!
Friday, May 8, 2009
NO CLEANING...today anyway :)
I just don't feel like doing it AGAIN
The boys are on a camp out so doesn't that make it the girls night out?
HOW do people keep doing the SAME THING OVER AND OVER EVERY SINGLE DAY????
Thanks, I feel better now. (after eating some chocolate chips and peanut butter, on a frozen banana of course!)
maybe I'll go CLEAN!
Wednesday, May 6, 2009
We were married May 6, 1994 in the Salt Lake Temple.
When we first found out about Emily's illness, someone told us this would either tear us apart or bring us closer together. We both looked at each other and knew we were both in this together...through good times AND bad!
It's funny to think back on our first apartment, our first jobs, our first real argument that didn't happen till Jacqueline was born.(don't worry, we've had plenty since! Well, one or two anyway.)We laugh every time we think about it because it was so silly! Matt just happened to say, "If we can't afford a bed for Jacqueline, we can just put a mattress on the floor...no big deal" Not that I am EVER over emotional, but I came unglued! I couldn't believe that he would EVER think it was OK for our kids to not to have a BED! (Funny thing, Emily slept on a mattress for a few months! ...Never say Never!) It's funny how important some things SEEM to be :)
Trials strengthen us, they teach us and they give us new and greater perspective on what life is really about. I am so grateful to have a husband who is willing to take my hand and travel through life with me. I know that the Lord knew I would need his strength, his love, his support, his FUN, his love for life, the Lord, our kids and for me!
Matt sees me better than I see myself. He lifts me up when I am down and he cheers me on when I am up. I don't know why I am so blessed but I thank my Father in Heaven daily for allowing him to be in my life. He is a wonderful husband who listens and is always looking for ways to improve and make things better. He is an amazing father who plays with and supports his kids in anything they want to accomplish.
Sister Hinckley once said that when she married President Hinckley, she knew he would always put the Lord first. She was OK with that. I have really come to appreciate her example because Matt also puts the Lord first. I am OK with that too :) I have come to realize that in putting the Lord first, he is a better husband, dad and human being. He has always been such an amazing example to me of someone who is willing to sacrifice the temporal things of today for the more important spiritual things of tomorrow.
I love you Matthew Alma!
Tuesday, May 5, 2009
Jac ran the 800 finals and WOW what a race! Sadly, we weren't there to see it but thanks to our neighbor who takes great pictures, we are able to get a feel for what it was like...It was neck and neck the whole way!
Jac took 2nd place! She missed 1st by less then one second...so CRAZY, so FUN!
1st place! You should have seen it, Kenzie started the team out strong. Jac was able to push past 2 people, and by the 3rd lap we all thought they might take 3rd. Shay kicked it into gear and ended her lap in 1st place. Abby easily kept the lead for the last lap. They did it! great COACHES and great FRIENDS!
This morning she spent about an hour wiggling her tooth in front of the mirror...after a little tug from mom, it finally came out!! YA HOO!
...2 teeth out in 1 day!
Stay tuned for tooth # 3...
Friday, May 1, 2009
Maps have been a really fun thing to learn about. Especially with a great teacher like Mrs. Moore who ended the unit with PIRATE DAY! Emily was really excited to come and join her class on a treasure hunt. Every child had a job to do on their "ship". Emily's job was to hold the flag.
Emily held on to Cambry the whole time. Mrs. Moore asked her to go in Halle's group and Emily wouldn't because it meant leaving Cambry! I felt so bad for Halle, who didn't seem to mind. I just had to sit back and hope Emily would warm up to everyone. All the kids are so sweet to her and want to be her friend. It is just hard when you only come a few times...she gets pretty overwhelmed.
One little girl came up to me and said, "Emily just wants to be with Cambry doesn't she?" I was glad she said something to me because Halle was right there with some other kids as well. I told her that Emily is just a little nervous and since Cambry lives right by her she has seen her more. I told them that when Emily comes back to school she will have a chance to be more comfortable with everyone. I assured them that she wants to be friends with everyone. I hope they understand.
After finding the treasure chest full of chocolate coins..mmm... they played different pirate games like "Walking the plank" and "high dice"...very cute and clever. I love how creative Mrs. Moore is!
When it was time to go to lunch Emily was so devastated because she wanted to STAY! I let her go with the kids to the lunch room and see what it's like. She got so excited to see so many friends from the ward and from her class last year. She kept looking for Thomas though. She wanted to see her big brother!
We went to his class to see when his lunch time started. Mrs. Rivera told him he could go with us which made Emily's day! We were headed outside when Emily decided we should take Thomas to Costco for lunch. How could I say no?
While Emily and Thomas enjoyed pizza from Costco she kept saying "Why don't we get Thomas more often mom?"
I agreed with Emily that having Thomas around IS much more fun!
Emily was torn yesterday wishing she could stay at school with her friends and have fun like everyone else. I was actually glad to see this because lately she has been telling me she doesn't want to go back, she wants me to always be her teacher. I have loved teaching her but I know that the best way to do home school (in my opinion) is to have ALL the children home schooled so they have each other to feed off of, motivate and inspire. I haven't wanted to get Emily hooked on one way or the other because we really don't know what next year will bring. For now, we are planning on her going back to school but we really have no idea! I can't imagine them letting her go back if her counts stay low like they are now. PATIENCE is the key right? The Lord LOVES to test my ability to let things happen in His time and not mine...I am not sure when I will have this perfected. Who am I kidding? Probably NEVER! I am doing my best though :)
We are so grateful to have Mrs. Moore in our lives. She has helped us out so much this year and she really makes Emily feel like she is a part of the class. This really makes a difference!! It has not been easy for her to come to our house 2 times each week after a full day of school, a family to take care of AND being the Young Women's president in her ward. I have been so impressed by her willingness and dedication to be Emily's teacher. Once she told me "Yes" she has never looked back. I really don't know how to thank her for her service. Just another angel sent to help us in our time of need!