So much going on and no writing about it... uhmmm, that's lame!
First of all, we've started a new schedule in our household. We, now including Andi, are all getting up by 6:30 a.m., trying to fix her daily fight against the nap. It's seemingly working better, although not every day. She goes down for a nap at 1 p.m.-ish, and then back down for the night at 8 p.m., if we're lucky. I'm trying to create more structure and activities, but dang, some days I just stink at it. Ideally, I'd be up in her face all the time engaging her in activities. Playing with the play-dough, coloring, reading books. More often than not, I fail. It's my goal to work at that more so, and not have her just sit with the IPad while I get my work done.
We went to PT yesterday, and that was great. However, not because of the appointment, but the time we killed on campus prior to the appointment. I brought her walker with us and made use of the open space that we do not have at home. I carried Andi and her walker across the parking lot. From there, we stopped off at the mailbox to mail a few items that have been riding around in my truck for a week, because I can't seem to make a stop at our neighborhood post-office. Then, I placed her in front of her walker and she made the long walk (maybe 75 yards, ...as I think it was a partial 9-iron shot, and that's how I gauge distance... my rusty golf game!) to the building of the day. Then, once inside and on the correct floor, we walked the long hallways and to the play table, where we normally wait for our therapists. We still had some extra time, so I encouraged her to walk with me down the hallway to and from the bathroom, which she did! It was AWESOME!!! It gave me confidence to take her "mall walking" whenever we can make it happen, so she can really stretch her legs and improve her strength and her own confidence to walk. Now, it's just a matter of when!? But, that's my new goal and I hope to "dazzle" our PT next month when we meet with her again. Andi was tired during her PT appointment, but the therapist was impressed with her improved strength and determination.
Today, we went up to OHSU to meet with their Audiology team. I think I saw Andi's first ENT surgeon walking through the waiting area, but wasn't positive it was him -- as usually, we saw him in scrubs and a hat. I wasn't sure he'd remember us, although I've sent him cards with updates, and even brought him a banana bread two years ago. He might not remember the cards, but the banana bread was received with much enthusiasm! So, anyway, we were referred to see the OHSU Audiology people to start the process of getting Andi her very first hearing aid that we'll own. I told them I was in no particular hurry to order it since I'm in dire need of a new roof, and the nice people at Columbia Regional said I could continue with the loaner awhile longer. We agreed on early June. We got a new ear mold done, ordered our color battery ("champagne") and her ear mold will be pink glitter. For those of us that knew me two years and seven months ago, stop laughing... yes, "we" do pink now. Whatevah! After what we've been through, I realized that life NEEDS more color, and although I used to HATE, I mean, H-A-T-E the color pink and all it's "pretty girl" connotations, and how little girls have to wear pink and boys wear blue... well, all that anger and animosity has fallen away because, well, look at her and what she's tackled. Yep, life needs more color. After we returned home and into the second hour of Andi's refusal to take a nap (a fight to which she eventually succumbed), my phone rings and it's the Audiologist assistant calling to schedule our fitting and follow-up. She said that it turns out that our out-of-pocket portion is only $200., and not $400., so we scheduled the fitting for April and the follow-up for May. Thank goodness, yet again, for our good insurance! Although, I did receive my latest Kaiser bill wanting $550. for past services/co-pays. Part of that bill is our co-pay on her T&A last year, and this years' out-of-pocket deductible fun. Y-e-a-h. So, win some, lose some, eh?
Hopefully, I'm making sense. I'm completely distracted by Daddy Bean loudly singing (I'm downstairs, while they are upstairs!) 'The Alphabet Song' while pounding on Andi's piano. It's completely adorable. [Don't Tell On Me For Telling!!!] It's my "night off!" and since I'm trying not to spend money, on a chronic diet, and am staying away from "The Jesus Juice"... wowza, I've sequestered myself downstairs for a few minutes "away!" Tis the life, eh? I'm sure many are jealous of this glamorous life!!!! ...Seriously, I'm lucky I can sneak away... not everyone gets afforded that opportunity! *Thankful!*
Tomorrow, OT is coming to our house for our almost weekly appointment. I hope to steal away some "mall walking" time and some pool time tomorrow. It's tough to carve out hours for all this, but, if I can do at least one... I'll consider it a successful day.
Now we've moved onto a special rendition of "Hey Jude"... 'nah, nah, nah, nah, nah, nah, nah ... Hey Cub!' ...LOL!!!
This evening we did a 'FaceTime' session with Poppa B & Ginga. Andi took one look at my Dad, she said & signed "ice cream". Totally cracks me up. She has words that she associates with certain people. With Poppa: ice cream; Ginga: bubble bath. I'll have to continue to think of what else she does. If someone taught her something or did something with her a lot... that's their word. It's pretty cute.
Two weeks ago, we met our OT, and PT consult, at a place called Play Date PDX. This place was a little kids paradise. Jungle gym for toddlers, super fast slides, and all sorts of fun. They serve food and even adult beverages there, so Real Housewives of Portland can go get their chardonnay on, while the kids try not to get bloody noses racing down the slide. In any case, it was awesome. Andi was hungry, as we'd just come from feeding/speech appointment. So, I got her a plate of cheeseburger sliders, cucumber & hummus, and chocolate milk. She did not like the sliders, but instead preferred the cucumber & hummus. Yes Dad, your grand-daughter really likes hummus! :) I laughed and told the therapists, 'no wonder my kid won't put on weight... she prefers vegetables!' Daddy Bean said she takes after him. I helped her with those sliders... and wonder why I can't lose a pound!!!?!? oops. Anyhow, the place was super cool. We hit it just as most people had left for nap-time. Now that we're trying to get on everyone else's schedule, that hour won't work for us either anymore, but, I really dug that it wasn't too crowded and thus, overwhelming for her on her first visit. The PT consult (a quarterly bonus from Early Intervention), hadn't seen Andi in quite awhile as she's been on maternity leave. She was BLOWN AWAY by how much Andi has changed and grown. She was seriously impressed. It's SO nice to get geniuine feedback from professionals like that!
While I've hidden down here long enough. I've rambled on and on... so, may I remember not to go so long without an update again.
13 days until the g-tube is removed!
I hope you have a celebration planned for that g-tube removal!!!! That is so exciting! And I love that her hearing aid mold will be pink glitter. Laynie's is pink and purple glitter:) I am glad she is doing so well. We walked the mall a lot with our OT and PT. I really think it helped her a lot!
ReplyDelete