Skip to main content

Some Fun and the EXCITING NEWS!

Visitors and Some BIG News:


 Starting with Tuesday: Tuesday was Andrew's Birthday, YAY! We both had the day off (We asked it off months ago) and I planned the entire day out! For Lunch we went to Montana Ted's, where Andrew got his Bison Burger! He likes Buffalo, me eh... it's okay. I tried it, but I prefer my ham and turkey. I'm not a big burger person though, so that might have something to do with it. Then we went shopping. I know that sounds
funny.  He doesn't care for shopping... BUT...he does if its at Golf Galaxy, and buying movies and an X-Box game at Target ( it wasn't original plan, but found some good clearence buys) :-) Then we went to Hollywood Palm's Movie Theatre for dinner. It's a dine while you watch your movie, type of movie theatre. We looked at it online in the parking lot before going in (to kill a few minutes). And we saw pictures of each of the theatre veiwing rooms. We both said we hoped we'd end up in the Wizard of Oz Room and WE DID! Ha!  Check out the decor in the room below! Then we drove home and played the new video game we bought. Overall, I think he loved his birthday, I tried to plan things I knew he liked, but had never maybe done before or got much tiume to enjoy. He'd never been to any of those places, so it was a pretty successful plan!



in movie theatre!





Then Wednesday...


Mom came up to visit for a few days. She arrived on the morning train and we both went shopping at the Oak Brook Outdoor Mall/Center. It was really nice out, windy but nice. I love that mall, its really pretty! She had Cheesecake factory for the first time. And then Wednesday night, we went to the restaurant that Andrew's serves at for dinner. It was a pretty exciting day and it was really nice to visit with her!

AND THE BIG NEWS...
Thursday was a LONG day. I had my clinical trial appointment that morning and a clinic/ regular doc appointment following it. Yep. one more month of just TOBI and then the trial is done and we can re adjust my meds. We might be switching my stomach meds (like Zantac) to see if it helps with all my stomach aches. And taking me off a couple others. Lung wise I was the same, so still mid 50s. Weight dropped a little, down to 103. I need to get it back to 108 lbs. BUT, with all the stomach pain, I'm not as hungry. But as you know I have been trying to keep my weight at 108 to make a point to doc that I don't need my G-tube anymore. This has been a huge topic for me, to read all about why I don't want the Stomach Tube anymore (after 15 years) Read all about it HERE! It will explain everything about the tube and my issues. However, with my lil weight drop I was so positive Doc would put his foot down and say "No". I know, I'm stubborn, but so is Doc.

But after some serious debating, he agreed it would be OKAY! SO I get to have my Stomach tube taken out this summer!!!!! AFTER 15 years!!!! Wow. I'm so excited. Now here is the fine print. I have to watch my weight. If I drop even a 1 lb or 2 I have to drink ensures and gain it back. AND if I drop more (if sick, etc). I have to agree to put a N-G tube down my nose every night to do a tube feeding that way, until I get back to 108 lbs ish. I've put an N-G tube down my nose before, its difficult at first. Its hurts (my throat is tiny and gets really scraped up, even when doc did a Bronchcoscopy on me it was tough for him). So I will have to WORK at my WEIGHT extra hard to make sure I don't drop. Cuz I don't want to put another tube down my nose, except for extreme emergency intestinal problems.

So excited. It has to be sewn shut since I've had since I was 14 years old. But Dr. Cohen will be able to do it too! YAY! I loved him when he did my triple hernia surgery last summer Read about my Hernia Surgery HERE! Since he is doing it, I feel he will try hard to make it as nice of a scar/ flat as possible. I can't even wait! I'll have to take off work for a lil while. But if I do it in the next few months, I can be all healed before we move to Sycamore!


The rest of Thursday, Mom, Andrew and I went ot Sycamore to get stuff lined up for jobs, apartment, etc. We ended the night in Schaumburg at Joe's Crab Shack. We took  mom therer for an early Mother's Day Gift!

What a great few days! I can't wait to put on a swimming suit post surgery!!! YAY YAY YAY! 15 years and its done!


Labels:

Comments

  1. AnonymousMay 10, 2014 at 4:54 PM

    So happy for you! :) I will be praying for a speedy and healthy surgery, & fast healing! Love you girlie! ~Helena M.

    ReplyDelete
    Replies
    1. CherizMay 10, 2014 at 8:06 PM

      Thanks Helena! I'm sooo excited! I'm not sure how much work I'll end up taking off. At least 2 weeks. I always take a while to heal and I usually have some little complication. BUT soooo worth it! It was really nice seeing you at your sister and John's Wedding. Keep in touch :-)

      Delete

Post a Comment

Popular posts from this blog

Updates Galore!

Big News, Big Times, Big Change: I had my post hospital Doctor's appointment on April 21st and it went well. I posted a video on my CF facebook page. My weight is back on track, heading up. Also, my lung function was around 55%, so that's almost my baseline. I got to take my needle out that night. OH BOY!! I loved being needle free! Whoohoo no more IVs!!!!! In the last week I have been super busy with a few different things. 1. Work. I have a new client AND I had all my post licensing webinars & exams this last week! 2. More CF Foundation Volunteer work. I held a presentation in my home town, where I discussed CF, the different mutations & severity of classes, as well as fundraising for great strides. I talked about the history of the CF foundation, care centers, and more about our local IL CF fundraisers. Overall, it wasn't a big turn out, so I was a little bummed. My hometown has always supported my CF cause, so it was disappointing not to have a good numb...
Post a Comment
Read more

Updates!

 Hey everyone! Sorry it’s been a while. Covid struggles have been all around and we have been focusing our on our kiddo and current life situations (jobs, home, everything really). We have been posting regularly on the Facebook page (www.facebook.com/CherizCFPage). We will keep you updated on there for now,  because we are doing some big changes to our current blog! Stay tuned!  In meantime, message our FB page if you need anything. Keep safe and stay happy.  We will be back. Promise! 
3 comments
Read more

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...
18 comments
Read more