Thursday, July 8, 2010

Missed the bullet?

hmm lot to upday. Mostly fun things and the places we have been.. I'll save that for another time. Today we had a check-up at PCMC transplant team. They wanted to do another echo and some labs.

Misky was really good for her ECHO. Did ok on the first blood draw.. the 2nd one she wasnt happy she had to do it again! She came home with One bear and 11 stickers, and 5 sugar free suckers. Pays to be happy.


Echo looks the same... labs look the same... she hasnt gained any weight since March.. cant be listed as a 1B until she falls under the 10th% for her age. *6 more weeks not not gaining and she will* for now shes still listed as 2.


They *the transplant team* didnt feel good about admitting her today. Theres many new risks of being healthy sitting in a hospital with ill kids. For now she'll be at home.  We'll talk to the on tues day if shes doing well/same then we go in the next week but if something changes then we see them in a week.
 
Feels like we may have missed a bullet but the bomb is about to drop. Oh I pray I'm wrong... So many things to worry about with this new adventure.
 
Shes doing well enough to be a hand full in the hospital but is slowly getting sicker. Have a question for heart families. What do you do about church?? They say not to go and risk betting her sick but we need to be refilled spiritually. What are the options? :S
 
Thanks for keeping up with our slow but wild ride. <3

4 comments:

Vanderbeeks Images said...

Funny, I was just thinking about missing church when I had cancer. If I had gone, the bishopric would have personally picked me up and carried me home. Someone with the same cancer died 2 years before me because he got ill. All I can say is that the most important reason for going to church is to partake of the sacrament. One of you go and alternate Sundays. Be sure to come home and wash right away. Then have them bring the sacrament to you or whoever is home. Are you reading any gospel oriented books? I read so many more books on the gospel during that time while everyone was at church. Of course, I slept a lot too. Keep a journal on all of the things you are learning spiritually. And the only other suggestion is to do your family history work. I have only felt the same strength and spirit I felt as a full time missionary when I work faithfully on my family history.

Christina said...

When Jacob was on house arrest the winter after his OHS we would trade off going to church on Sundays. When we got home we would wash hands, change clothes and hand sanitize. The person at home would do church like stuff during that time (watch church videos, do online indexing, read the lesson we were missing, etc). The person who went to church would then report on the Sacrament talks and we could discuss the lessons and any interesting comments made.

Also make sure you talk to your leaders to make sure you have home & visiting teachers that come regularly and do not come if sick. Attending Enrichment or other midweek activities are also helpful.

The other thing that totally helped was finding ways to serve others. Lots of people will want to serve you too, let them. The spirit that that brought into our home helped to sustain us.

Good Luck!

Hugs & Prayers,
Christina
Heart Momma to Jacob

One Happy Heart Family said...

hmmm interesting............. I am so proud of you wanting and needing to go to church. I went every Sunday (primary teacher) by myself with the boys because Bryce has worked Sunday for 7 years. I was so good at going and ignoring the stares! Yes people stared at me and treated me so weird, like I was a single mom who was preggo again, It SUCKED!! I quit going a month before Kylie was born and to be honest have only gone back once. I know and feel we should go, but just don't want to risk Kylie getting sick. Some people just don't understand and the "normal" oh he's just stuffy it's allergies is a bunch of bull!!! Anyways, we have thought of going on/off like Christina said they do, but haven't gotten to it yet :0) my parents offered to watch Kylie so we could go together, but thats not all of us and I hate that idea. We are not a full family without her and I don't want to do that. My old bishop offered to have the sacrament brought to our house. You could ask that or just take turns, sorry it's a hard place to be in, since we are back on house arrest it's not worth it to me to take her because I HATE seeing her suffer so much over the common cold. Well hope I didn't sound too negative?? Good Luck glad the appointment went well, 10% she must be doing pretty good to be there :0) Kylie goes to 11% one month then back down to 9% the next month so frusterating!!! :p

Hollie said...

As a single Mom, I haven't been able to go to church or even trade off with anyone since Elaina's been home. What I've done is have "home church". I watch KBYU, conference reports, and listen to uplifting music. I have asked my bishop to have the sacrament brought into my home. I even go as far as to get ready for church as if I were going to the chapel. It really helps. Don't get me wrong, I miss church, but at least this way I still feel like I've gotten my spiritual refill. Today is going to be our first Sunday at church. The doctor advised me to stay in the foyer or at the back of the overflow and not to take her in the chapel. No nursery, for sure! Maybe that's something you could do.... Just go and stay in the foyer, then you're at church and can still feel the spirit, but you're not in the chapel with all the germs. Good luck making your decision. No matter what you decide, Heavenly Father knows your hearts and will bless you!
Happy Sunday! We love you guys!!!!
Hollie, Ben and Elaina