The walker has finally arrived....albeit a day later than I expected. It arrived in full glory, shiny and ridiculously ostentatious. It is gold. You just wait till I post a picture and you will laugh as hard as we did.
For those of you on facebook this will be a repeat, but for everyone else -- well this is me so no surprises here. The PT therapist graciously offered to help me put it together and so we sat down to do so. The moment she took the walker out of the box I began to panic -- it looked way too big. As "psycho mommy" began to emerge, Lisa (the pt therapist) put me in my place by telling me to sit in a chair, open the other box and think about margaritas while she figured it out. Hmmm....guess I deserved that one.
We attempted to catch Avery in her new walker, as she really seems to like it, but when we tried she wasn't interested. We'll see what we can catch tomorrow so you can see what we mean about the bling bling walker.
Avery finally started to slow down a bit this week. The first 3 weeks of radiation didn't seem to phase her, but this week is an entirely different ball game. She has been a little more fussy, especially in the evenings this week. This hasn't taken the spunk or determination out of her hard work, especially in her PT sessions. She is the most determined little girl and fights very hard to do the things she wants to do. The motivation factor is key to gaining back strength and we are so glad she has it. She also has developed a bit of a skin rash on her head where the radiation is being administered. Her hair fell out in this spot as well and is not likely to return....ever. The treatment at this point is Aquaphor 2-3 times a day and will change to something a little stronger if needed. She doesn't seem to be bothered by it which is good.
Jeremy arrives tomorrow and takes over for the next 2 weeks. We miss him terribly right now and can't wait for him to get here. The downside to his arrival is of course my departure on Monday morning. But it has to be done and it will give Jeremy a chance to be with her 24/7 for a bit. It seems weird to be coming to the end of this part of the journey already as it seemed to take so long in Memphis. We are really looking forward to being home and having familiarity on our sides for a bit. We are hesitant to be so far away from our dr's at St Jude, but keep reminding ourselves that Memphis is only 8 hrs away. We are not looking forward to the Oral Chemo treatment as we are once again in the unknown. Our hopes are that the chemo will have a minimal effect on her and she will continue to grow and develop as a normal 18 month old should. She does her best when she has other kids around and we are optimistic that she will feel well enough to play with other kids often. The plan is for our friend Sharon to watch Avery during the week. We are so grateful to have someone we trust so fully, willing to take on the responsibility of her care when we are at work. On top of everyday kiddo activities, Avery may also have all 3 therapies and lab appointments. It is such a relief to not have to worry about trying to schedule all of that around our work. This will allow Avery to continue on with her progress and us to keep our jobs! So for those of you who know Sharon Norris....she is one of our little angels and we are so thankful she is in our lives.
Well, off to bed we go -- 2 days of getting up early have worn me out! We are hoping tomorrow might warm up so we can take Nana to the beach -- but it isn't looking good. Stupid Hurricane. It has been overcast and rainy all week here, along with milder temps in the low 80's -- I dare say Floridians would consider it cold! We'll see if the sun comes out for us tomorrow...