Frustration

A week from tonight, I am supposed to be going back to work. If I still have drains in, I'm not sure that's gonna happen. Yep, drains still in. And putting out about 50cc per 24 hour period. In order to get them pulled, they have to be less than 30cc/24 hr for 2 days minimum. Ugh. And they hurt. And the skin around them is destroyed from the tape I've been using. Tonight I finally got all the excess sticky off with warm water, my fave Zum soap, a little Argan Oil, and rubbing. Oh, and help from my darling husband because I can't reach the drain site on my left-it's more posterior than the one on the right.
As far as my scars look, they look awesome! Dr B went right back in through my mastectomy scars, but sealed them with internal dissolving sutures and glue on the outside. Some of the glue is still on the scars, and kind of scabby, but overall look pretty good. The expanders she was able to get in are 550cc sized. Since I started with 50cc, and got 30cc more injected last week, I have 80/550. I am going back this Thursday for another fill, because she is hoping by filling, we will push any excess fluid out by giving it less room to accumulate. Then I can do every week, or every other week for fills. For my 'fill friends'-man the muscle spasms are terrible! I'm still having a really hard time lying down-like to sleep-but I'm hoping that is attributed right now to still having two drains in?? Just a little frustrated, hoping I would feel much better by now. Ive had a couple of crying days, and hate feeling that way. Brian feels bad because there is nothing he can do to make it better, and the kids get upset and worried. I hate pity parties, but have been in kind of a funk the last few days. My nurse seems to think I may be doing too much-thus the pain and continued drainage......hmmmm, me, do too much??

On a good note, Ethan's new PCA-Personal Care Assistant started last week, and has been wonderful! She has accompanied me to a few of his appointments, and especially right now, does all the lifting for me! It is nice not to have to have Brian take a day off just to help me. His PCA's name is Denise, and she lives about 3 minutes from us. Her availability is primarily days, so we have another gal to meet who can help us out at night. Ethan seems to be getting very used to her, and she is very good with him! Thank goodness for the Lopez Waiver! We are so grateful.

Today I got to take the bald kid to his second Vital Stim appointment. This is a therapy that works on helping him to swallow more consistently. They attach two small electrodes to his neck, one on each side of his throat, and it emits a slight electrical current which 'hugs' his throat. She then gives him tastes of foods, and we watch for swallows. The thought process is that with the Vital Stim patches on, it is a little difficult to swallow, thus when off, he will find it's easier, thus do more naturally. Today he did grape sucker, hot tamale, lemon juice, and frozen applesauce. He did so well, he got to swing at the end-which he loved! He was also on the patches for 41 minutes, which is awesome! His therapist, Amy, is the Aunt of one of Hailey's friends-small, small world. I am so excited for this therapy for our little bald guy, and looking forward to positive results!!!

I did get to do dinner and drinks with some work girls on Friday, and it was nice to get dressed in clothes other than sweats or PJs and go someplace other than a doctors appointment! Thanks NKCH girls for the laughs!

Hailey's final VB tourney was last weekend, and the girls did pretty well. We went into Sunday playing for Silver, but didn't pull out the wins. A couple of the girls on the team made comments about 'playing poorly and losing on purpose so they wouldn't have to be there all weekend'. Frustrating for the girls who love the game and play with their hearts, really kind of takes the wind out of their sails. Hailey is generally known for her positive, upbeat attitude, and I didn't see it this season because most of the other girls were just so negative. I have had more than one coach, parent and even a photographer at one tourney tell me how much they love watching her play- with her constant positive attitude and expressions. Sad to see that sucked out of her this season. Oh well, live and learn. And get the hell away from the negativity!!!
Hailey was also a little nervous, as we are pretty confident the anonymous text came from one of her teammates. I can't imagine how she felt out there, playing beside someone who would do that. But she's a great kid, and did what she was supposed to do; hold her head up and be proud. However, I can say I am glad this season is over, and Hailey has decided she won't even try out with this club again next year. There are plenty out there, and she saw a couple of coaches she did some private lessons with last fall who were very interested in her still. Now that she drives, getting her to Olathe, or Shawnee or Lee's Summit won't be such an issue for practices.

Parker and Brian are hoping to hit the driving range this weekend. Doesn't look like the weather is going to cooperate. He has also mentioned he may want to run cross country next year, so he and I are going to be working on mapping some long runs. I will be riding my bicycle while he runs. He has been making himself a Nutri-bullet smoothie for breakfast every day, and been experimenting with new fruits and veggies. Today he did spinach, steel cut oats, strawberries, kiwi, apple and almond milk. He's getting pretty handy with the smoothie making-and loves them! Great way to get his fruits and veggies in!!

We are supposed to be heading to Lawrence Saturday for Hailey's sister play her Senior Day of softball at KU-please Mother Nature cut us some slack! We really want to go watch Mariah play!!
Then we are planning to swing by Overland Park on our way back in town as Jonny has a soccer tourney he will be in KC for. Again, Mother Nature has to cooperate for all of this to happen. And if I don't get to go to The west bottoms for First Fridays at my favorite shopping spots-Good Ju Ju and Bella Patina, etc, etc. I am not going to be happy!! And me in pain, with drains, and cutting out sugar-oh yeah, doing that this week also- not getting to spend hours perusing the treasures of others, might just be an ugly site.

Gotta try to sleep now in my 45 degree position propped up with 3 pillows behind me, one under each arm and a small one on my chest so I can get up and take E to his Pool Therapy tomorrow morning. But a quick shout out to my nephew Kellen, who hit a 3 run in-the-park homer tonight I got to see! Go Kellen!! We have my other nephew Taylor's games tonight-hoping he does as well!!