Spring is busy...

Lucy is doing surprisingly well. She is a champ! She has been mimicking things we say, wiggling her little body in ways that we have never seen, becoming very opinionated and enjoying the outdoors.

We took her to her Pulmonology follow-up and she was talking up a storm. One of the RT's and nurses that we usually see when we go came in to see Lucy. We were trying to get her to talk to them but she would only smile. As soon as they left, she started firing off her words one after anther, (Uh-uh-uh, lalalala, boots, toes, woof woof) we thought it was hilarious. Dr. Yuan said that Lucy looks very good and that we are doing a good job (which wouldn't be possible without all of the help we receive) and that was good to hear because I often wonder if everything we do makes a difference.

Because Lucy's level of care has decreased immensely (it is still a lot of work) we have been able to take her outside a lot. She loves it! We have rarely taken Lucy out with her BiPAP mask on because she didn't need it. I wasn't sure how it would be but people have been very curious and kind.

Sometimes, Lucy gets mad when we put her mask on. She has been tolerating well without but I get nervous letting her breathe on her own because it is a lot of work for her and she just got over something horrible. I have been letting her have sprints here and there and she loves it. She even pulls off all of her mepilex (sp?) .

P.S. Dallin and Jocey are Rockstars.

More to come on these two...

Seven

Seven years ago, Chad and I were married in the Salt Lake Temple. There we were sealed for time and all eternity and there we started our family of two-which would soon be 5! In the Temple we make promises to our Father in Heaven and He makes us promises in return. One promise we are given, if we do our part, is that our family will be sealed-which means that even after our life on this earth ends, we will still be a family and enjoy family relations if we keep the promises that we have made.

Salt Lake Temple, April '03.

About one year ago, just after we found out about Lucy's diagnosis, we had a Family Home Evening where Chad explained the Plan of Salvation to Dallin and Jocey. We talked about who we are, where we came from and where we are going. We talked about Lucy and her life here on earth. We also talked about Lucy leaving us and where she will go. We also discussed that even though we may not always physically be together that we are promised that we will one day be reunited and that not even death can seperate or break our family unit.

Photo by A Little Sussy.

I have always had a testimony of The Plan of Salvation and Families but my faith in these principles has increased and the peace, perspective and strength it gives me is powerful. Even with this knowledge and truth, I realize that the life my little family is living is difficult. Often times there are moments and even days where the uncertainty and difficulty of life is discouraging.

Photo by A Little Sussy.

Because of my knowledge of the Atonement and our Heavenly Father's Plan, I have peace and faith that my relationship and bonds with my family go beyond the grave. I am linked with my ancestors before me and I am linked to Chad and my children and posterity if they also make and keep these special promises. Although very difficult, I know that whatever happens to my little family we will be together for eternity.

Taken by TeaTree Photography.

We celebrated our anniversary after Chad got home from a Conference session. I got really fancy and put mascara on and did my hair:) We took advantage of having my sister here and we walked around downtown PA and then stopped to get dessert. We were so tired that we just sat at our table and not much was said. Infact, Chad brought to my attention that I was staring at the family sitting next to us-it was unintentional. We didn't last long and went home to go to bed. Fun, huh! Chad apologized that we didn't do something really exciting...are you kidding!! Chad doesn't realize that I am just grateful to spend a few moments with him alone.

While we were leaving Dallin cried to Aunt Melanie "My dad and mom left! They already went on a date when I was four!" Apparently we shouldn't ever leave them. The kids knew that we were going to go on a date, so during the day they tried to entice us to stay home and have our date around the table because they "would serve us whatever we wanted." They also offered to lock themselves in their room so we "could be alone."

So, Happy Anniversary, Chad!

Since Lucy has been home...

she woke up with pink eye (maybe)! I couldn't help but chuckle at "one-eyed Lucy." Our night nurse is still being coordinated, but Lucy has been sleeping pretty well. We are currently doing treatments twice during the night, which keeps us busy. Lucy loves sleeping with us part of the night... and I don't mind it either.

Lucy's bath chair arrived and it is genious - the perfect chair for any use.
She was dubbed queen by her older sister.


Lucy also got her "boots." She actually loves them! I think she feels big like her siblings with them on. She can't help but grin when we put them on and when we talk about them she yells "boots"!It has been a long time, but Lucy got a short break from her bipap to take a much needed bath. She didn't want to get out and she was so active wiggling her body in the water.

This picture was taken by her dad, if you can't tell. She loves him just as much as the rest of us. My parents and sister, Melanie, have been so fun and helpful. My very handy Dad is building a special bed for Lucy to sleep on when her night nurse comes. Melanie took D and J bowling today and one game was more than enough:). My mom has been organizing and doing things that I don't have a lot of time for. AND... I almost forgot - she made the best cinnamon rolls tonight.

Life is good.

I almost forgot...

I started taking pictures of some of Jocey's outfits that she has worn to school.

When Lucy is at home and things aren't crazy, we set the kids clothes out the night before school and they just slide them on in the morning.

Because we would return from the hospital late we didn't put their clothes out. Jocey just got dressed on her own and it wasn't worth my energies to try and persuade her to wear outfits that went together. Also, she likes to do her own hair and she dabs a little mascara on too.

Sooo....

You can tell some of her favorite clothing items, all cute (except for her Ms. Frizzle- from Magic School Bus -dress), just a little questionable when combined.

She gets her confidence from her father:)