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

5K. I could cry. Beyond Annoyed.

My 5K I paid my registartion fee weeks ago, have been training and I'm ready for the 5K. However, I didn't get to run my 5K today. Why? Because Cystic Fibrosis decided to one up me. I got my spots back friday, and they just got worse and worse. They look like this: They take over my feet, and sometimes my calves. I posted about this a few weeks ago. I had them during the last few performances of Hairspray. I call it the "Mummy disease" because when it happens my joints freeze up and I can't move. So the morning of my 5K I wake up and they are on my thighs...     and on my arms. This is the worst they have been in years. I took pictures to show Dr. B at my clinic on the 11th.  I'm just really bummed and upset about my weekend! I was supposed to run my first 5K!!!!! I then had a bags tournament in Peoria for the Dream Factory, and was then going to head to Champaign for Sat night- Monday! My friend Alex, reserved me a ticket for Ren...
5 comments
Read more

My Dad Deserves More Than 1 Day!

Happy Fathers' Day to ALL the Fathers out there! I wanted to post a list to why I'm sooo thankful for my dad (its faster, bit more fun, and I gotta get ready for my Dad's Cookout still)!!! Top 15 (10 isn't enough..lol) reasons Dad should get more than a day of celebration: 15. He loves meeting people, making friends, and is quite social. 14. When something goes wrong, he is the person that can say the right thing to make me smile :-) 13. Is always honest. 12. Few yrs ago, he gave me HIS car, (so i could get back and forth to work/play practices) He rode his bike to work and back (he enjoys it too tho) 11. Best Sense of Humor! 10. He never complains, ever! 9. Growing up my Dad worked 6am-3pm at one job and 4:30-10pm at another. 8. Dad still managed to go to 99.9% of my performances 7. He is the least judgemental person ever, he talks to & helps everyone! 6. He is a pro at making doctors, insurance companies, & hospitals do ...
3 comments
Read more

A Hospital at Home

Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right!  I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health??? Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day. 8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I...
2 comments
Read more