Saturday, January 31, 2009

Practically Perfect in Every Way

Elise turned 7! And it was a great day. It turned out great thanks to my sisters and friends who really helped me out! Elise was completely happy. My sister Kristine made this cute shirt for Elise. It was a free dress day at school and Elise couldn't wait to wear it. My sister Jane made the necklace.
These Bakerella cupcakes pops are so yummy. They are kind of a lot of work but they turn out so cute. Luckily I had some great help -thanks J&K. Warning: they are bite size and it tricks you. You end up eating more than you should.< My neighbor, Jen, took my kids to Jumpin' Jacks for a couple hours after school. I was able to make a visit up the hospital to check on Kenyon. I don't know if you can tell from the picture but they were playing very hard. Thank you Jen and Love boys!! We all thought it was great birthday activity.

My good friend, Aimee, saved the night. She invited us over for a little birthday party for Elise. It was so great. She had decorated her house and made it so fun for Elise. We ordered dinner and let the kids play. 8 kids and 2 adults. It was a great night. We went home tired and happy. The only thing that would have made it better is having Kenyon join in on all the fun.

Seven things I LOVE about Elise:

  1. Her smile and laugh. She loves to giggle.
  2. Elise is really easy to please. She is happy with just about anything.
  3. She is a wonderful sister- especially to Quinn. Elise takes good care of her.
  4. Elise is athletic and loves to try any sport. I love watching her play soccer in the backyard with Kenyon. She is also a great gymnast.
  5. Elise loves learning. She also loves playing school.
  6. Elise loves her friends. She really cares about them and hates to see people have hurt feelings.
  7. Sometimes we butt heads - she can be very stubborn - but she can also be so helpful and cooperative. I love that.

And finally - a Kenyon update - he had a pretty good week. He is feeling his energy coming back and starting to eat. He is slowly adding food back into his diet - toast, rice, noodles, potatoes, etc. Not very exciting but he seems to be tolerating that well. He is also taking his meds orally. We are hoping he will be out of the hospital by Tuesday. The bad news is that it is a slow process to heal from GVHD. He will be back on a lot of meds for a while. The meds include steroids and immune-suppression so we are going to have to really protect our house from those icky winter germs.

We really appreciate the visits, help, and prayers. We feel blessed in so many ways.

Wednesday, January 28, 2009

Guess Who Came To Visit?



Quinn caused quite a stir at the BMT unit today. They finally said that she could come. I don't know if the original doctor who said NO knows about it but oh well. I was happy to bring her and Kenyon was very happy to see her. All the nurses and aides were also happy to finally meet her. Life is crazy for me so I still didn't stay that long but it was nice to visit.

Kenyon has started Progression 1. That means that he got to add applesauce and cream of wheat to his diet today. Pretty much like feeding a baby. Taking it slow and introducing one food at a time.

Kenyon is feeling much better but the treatment of GVHD is a slow process. I don't know when he is coming home. But, it is better that they get him really feeling well. He is still on IV meds and nutrition and that will take some time to switch over.

He gets a little stir crazy but he is able to work (which we are SO grateful for). He has had some great visits (Thank you!!) and then there is always the bike, pacing the halls, and the TV. I think he is managing quite well.

Tuesday, January 27, 2009

Isn't he cute?

I am a loser mom! I had no idea that Teague couldn't see. Until recently. We have had a couple of occassions where I realized that maybe Teague needed glasses. I finally got an appt. for him and sure enough. He DEFINITELY needed glasses. And you can't even imagine how excited he was. He picked out the perfect pair of glasses. The lady at Costco told him it would be 10-15 days. Our friend Jen, told Teague that usually the come faster - maybe 5-6 days. Sure enough day 6 came and Costco called. Teague was BOUNCING off the walls. We couldn't get to Costco fast enough.






Monday, January 26, 2009

Best Ever ?

I am not sure I have tasted enough cupcakes to say it is the "Best Ever" but really it is dang good. For sure better than the famous Magnolia Bakery in NYC. But that is worth a visit as well.

Billy's Bakery in Chelsea, NY. In my opinion, it is a must. When I traveled to NYC with my mom and sisters we stayed in Chelsea. Only two blocks away was the cutest little bakery and it was open late. So of course, we had stop by on our way home to pick out a delicious treat.

Thanks to Martha Stewart, we have Billy's recipes for his cupcakes and frosting. For Gavin's birthday, my sister tried out the Vanilla Butter Cream frosting. I'm sure the preschool class didn't appreciate the quality of the frosting the way we did, but they loved the bugs. The color and decor was Gavin's choice. Next time I hope to do something a little more beautiful.

No question in this house - it was the best frosting ever. Now I can't wait to try the Chocolate Buttercream. Oh baby! Or maybe I just need to take a trip back to NYC.

Saturday, January 24, 2009

Not Much

I know you are checking. You want a Kenyon update. I don't really have much to say. I really should make him write these. I have been able to go to the hospital for short visits each day. Thanks to all my helpers! But, that means that I really don't know much. The GVHD hasn't spread into other organs -that is good. The steroids seem to be working, but slowly. Today he got to add 500cc (not much) of clear liquid to his diet. Depending on how he tolerates that, he will add a little more tomorrow. The TPN (IV nutrition) is definitely helping. Kenyon seems to be much happier now his body is getting what it needs. We don't have an exact day for him to come home. Probably another week. It will really depend on how each day goes and how well he tolerates food. We would love to have him home but he is getting great care.

Thanks so much for the meals, watching kids, visits to Kenyon, phone calls, and especially your prayers.

coming soon - a post about the BEST cupcakes frosting EVER. Seriously. Love. Love.

Wednesday, January 21, 2009

Hospital - Day 2

Kenyon is a trooper but he isn't lovin' it. Today he had a central line/port put in. He had one all summer until about October and then had it removed. It seemed that we didn't need it any more. But it is back - and it is probably better. It is much easier to administer meds, fluids, and IV nutrition.

He is on IV nutrition to get his gut/digestive system working properly. It has taken such a beating and he needs to get things stabilized. The bummer is that he feels hungry and wants food, even though his body is getting the nutrition that it needs. Strange. I think he will be on that for a couple days at least.

Kenyon also had the fun of a colonoscopy today. They put him out so he has nothing to say about that. But it definitely makes me not want to get to age 50. I don't want to drink that icky stuff. I have a hard enough time drinking 8 glasses of water a day.

Thanks for all your love, prayers, and concern. We appreciate it and need it.

Tuesday, January 20, 2009

Hospital - Day 1

Well, it finally happened. We always knew it could but hoped it wouldn't happen. Today at our clinic visit the doctor decided that it was time to admit Kenyon. I have been pretty emotional about it. But we already knew that I am a cry baby. It is really a good thing. Kenyon has been so sick and miserable with this GVHD. They will be able to take care of him and get him the treatment he needs.

Tonight he is back on that stupid bed and his arm is full of IVs. He is also drinking GoLytely (this big old jug of fluids). He gets to have a colonoscopy tomorrow. Fun stuff. He says that the drink is AWFUL. Apparently the pharmacy is out of flavor packets.

Hopefully we get nurse Richard again. Those were good times. It was actually nice to see a few of the nurses and aides that I haven't seen since this summer. They are so good to us up at BMT unit at University Hospital.

Oh and guess what - Gavin turned 5 today. He is miserable. He had a good day despite the sickness and he appreciates all the birthday wishes and gifts. Hopefully he will feel better soon.

A few pictures...

I tried to copy my cute sister Jen. She has the cutest birthday banner. Thanks to my niece Annie, I had a cricut to make it a little easier. But my kids informed me that I don't decorate as much as my neighbor Jenni. Apparently she goes all out for birthdays and my decorations were not cutting it.

In the craziness of the day, I ended up ordering pizza. Except I forgot that Gavin had pizza for lunch today (My friend Sunni saved me and took Gavin to Chuck E Cheese for his birthday. She wins the prize!) and Teague and Elise are going to eat pizza at school tomorrow. Oh well. It was easy.
My carpool partner and good friend, Cheryl, has the hook-up at McDonalds and has fixed two of my bad days with birthday cake from McD. It is good! Gavin wanted to eat Ronald McDonald's face so we started by cutting a piece out of the middle. My sister Kristine also made a cake and we at some of that too. And then we watched Biggest Loser. I don't even feel guilty. :)


Gavin wanted a wheelbarrow and a digital camera. That is what he got. Pretty funny. He was seen pushing an adult size wheelbarrow this summer. This ought to be a little better.



Don't those shoes and that smile kill you? She knows she is cute.



My neighbor let me borrow her Bumbo chair. It is so funny to see a little baby sitting up, but it works great.





The Green Machine. Gavin wanted this more than anything for Christmas. And Santa delivered!

Wednesday, January 14, 2009

Love Love Love






There are too many good pictures to pick. My friend Heidi did an amazing job. She was super patient with us and worked so well with Quinn. I probably should have done them when Quinn was newborn but I waited until she was 6 weeks. Quinn just wanted to keep her eyes open and watch everything. Near the end of the session, she finally fell asleep.
Check out Heidi here for more of her work. I love her. She is a dear friend and a great example. She is putting up with all the cancer/leukemia junk at her house too. Only it is worse because her little guy is only 6. Heidi is so tough and handles it all so well. I love that I can call her and vent and she knows exactly what I mean. Thanks Heidi. I LOVE, LOVE, LOVE the pictures.

Monday, January 12, 2009

Roid Rage

The news this week after visiting Huntsman is that it is time for steroids. Unfortunately, I don't have tons of details. I win the prize for worst wife. I went to a hair appointment instead of a doctor appointment. I was really going gray, though. Something had to be done. But, that was dumb because now I really don't know enough to update you. Maybe someday Kenyon will write a post for this blog. He has a much better understanding of what is going on.

What I do know is that this steroid should work. It ought to put a stop to the nausea right away and treat GVHD. But, as with all his meds, there will be side effects, too. We'll see how that goes. I just hope he isn't too mad at us all the time. That kind of scares me.

But on a good note, don't you love 24? I am so glad that Jack is back. Monday nights will be so much better.

Tuesday, January 6, 2009

GVHD is LAME

That is what I think - anyway. The doctor says he is pleased. Easy for him to say. Kenyon is MISERABLE. He feels pretty much as lousy as he has ever felt. Yesterday at our appointment, the doc diagnosed Kenyon with GVHD (graft vs host disease). They have told us all along that a little of that stuff is good. It tells us that the new marrow is doing its job. So we knew this could happen but we kept hoping it wouldn't. The GVHD has shown up in his liver, skin, gut and mouth. So, guess what that means??? More medicine. Kenyon loves getting more prescrips. Not. One of them requires him to swish medicine in his mouth for FIVE minutes 3x/day. The doctor says he should feel some relief quite quickly otherwise we will be getting another prescription for a steroid.

So, there you have it. Keep him in your prayers. He is hating it.

PS - I am mad at Huntsman. The dumb doctor told me that I can't bring Quinn anymore. Please. Snotty toddlers - OK. Tiny little babies that need their mom - Not OK. Ughhh.

Sunday, January 4, 2009

Blessing Day



My sweet baby girl was blessed (christened) on Saturday. Usually it is done on Sundays, but for various reasons we did it on our own with a few family and friends. It is kind of nice to have it be such a simple, private affair. She was a little fussy but Kenyon was able to get her to settle down and proceed. It was a beautiful blessing that Kenyon gave. It is definitely a blessing in our lives to have her in the family.

And really - do you love the leggings and gold ballet shoes? They were killing me. Her feet are so dang skinny that they look kind of silly on her but oh well. And that dress. I fell in love with it. It is super soft and cute.