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Tuesday, June 8, 2010

Encouraging words

Phew, there’s a lot going on around here! I’m packing, cleaning, getting excited, making lists, doing laundry, getting even more excited, and getting Sailor all ready! On top of that I feel asleep on the couch for over 2 hours today when Ben took a nap so I’m a bit behind but trying to remember that I have tomorrow too. Tomorrow evening we will travel down to my aunts in the Bay area, who has graciously offered to drive us to the San Francisco airport early Thursday morning. This is really nice because we won’t have to mess with the shuttle or pay for parking. Thanks Aunt Domini!

My girlfriend April came over today and brought me some cute clothes to take and I’m also going to make a late-evening run to the store for last minute “essentials” (vacation means cute, new outfits right?!) and Ryan has gotten Ben’s car seat all clean. I keep trying to pump Ben up, telling him about where we are going, but I don’t think he has any idea what I’m really saying. That’s okay, he’ll know in less then 48-hours!!

I wanted to post up this sweet email I received from Melissa, an adult CFer living in Monterey. I met her family, after we got Ben’s diagnosis, through mutual friends. Melissa has a milder form of CF, she wasn’t diagnosed until her teens. She is pancreatic sufficient, which means she doesn’t take digestive enzymes when she eats, so her CF went undetected for a long time. Her family started The Living Breath Foundation, which offers financial aid to CFer’s living with in the Monterey Area.  They are even helping us with our portion of Ben’s vest (if I ever get the bill). I attended their benefit last summer with my parents. It was a huge success!

Anyway, Melissa sent me an email a couple days ago that really touched me. It helps to know, that from an adult CFer’s point of view, we are doing things correct!

Hi Margaux,

I just read your blog about Ben and his tobi and psudo... i just wanted to send you some BIG HUGS!
Some things i just wanted to share with you that i think of when I hear about it is

A. Tobi tastes terrible... i don’t know if you knew that but i always thought it was really gross, but eventually did get used to it. And at the higher concentration of the eflow i bet the taste is even stronger. I know you cant make it taste any better while he is using it but maybe giving him juice or a popsicle or something when he is done might make it a little easier.

B. I think it is great that you and Ryan don’t want to force things on him. Its good to keep a routine but its life and we all need breaks and by allowing him to take breaks i think when he is older it will help him to deal with things better and not want to push away treatment as much.

C. Hawaii will be a good break for all of you and don’t forget how that good sea salt air is doing good things for his lungs. Whenever i am in the ocean it always makes me feel wonderful and clear after so he may not be doing tobi but he is getting some good natural treatments by being at the beach!

D. The hospital is hard, but sometimes i think that it is harder for the people who are watching you (the cfer) go through the hospital. Its a lot of sitting around and being bored, and i am sure ucsf will keep him very entertained... and the LBF will def send some fun your way too! I just want you to know that he will feel wonderful after he goes in, esp since he has never been on the IVs... they really are going to kick the germs butt and he will feel so clear! When i first started going to the hospital i felt like it took the CF away from my lungs for two weeks (which i called the "glory period”) after i was done. So i know it will be hard and suck but if he has to go he will leave feeling great. And if you have any questions about anything feel free to call me... and remember to not take any crap from anyone in there just cause they are wearing scrubs!

I hope you guys have a wonderful time in Hawaii!!! It will be so good for the soul! You are such a good Mommy and i know Ben wouldn’t want anyone but you!
Hang in there and know that I am thinking of you!

Thank you Melissa for you encouraging words!

Next time, I do a posting we’ll be in Hawaii!! :)

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