Wednesday, August 26, 2015
Well the first full week of school went well - Avery seemed to slide right into the swing of things and was very excited to see her classmates. We have a new case manager at the school and so far I have been really impressed with her and how she works with Avery.
Avery has been working hard on walking and balancing herself. It's amazing what a little GH juice will do! Her strength has definitely improved and we find her spending more and more time cruising on her own between walls and furniture at home. At school she uses her walker 85% of the time and then cruises like a new baby learning to walk, within the classroom. We still have a lot of falls and to be honest I have to close my eyes a lot as she tries to maneuver - but knock on wood...no ER trips for stitches in the last 9 months so we are calling it a win.
We are all anxiously awaiting the arrival of new baby girl Christiansen. Believe it or not, I am really not swollen this time (although give it another week or 2 and I probably will be). At this point I am not sure what will be more difficult...chasing around 2 toddlers with a huge belly...or chasing around 2 toddlers and an infant. I guess an infant can be put down in a swing, so I am anxious for her arrival myself. Little Sister is set to arrive on Halloween - or if I have my way, 10/18. We'll see what happens. Avery is busy practicing with her Itty Bitty so she can be a big helper. Emmett is not interested in helping at all - although potty training has been the biggest help so far. (thanks nana!) We were so not looking foward to buying 3 different sized diapers. Luckily Emmett stepped up and figured it out these last few weeks.
We are fast approaching the month of September - which happens to be Childhood Cancer Awareness month. Going Gold is the "IN" thing to do and we ask that you support us as we plaster the page and FB with our message. Childhood Cancer is the number one killer of our kids today. Currently I can name 3 other kids that have been diagnosed with cancer since our diagnosis that we were friends with prior to being introduced to this world. Are you kidding me? These aren't people we met after our diagnosis. These aren't families we met at St Jude or on the Oncology floor at Children's Mercy. These are 3 families that we have dinner with, drink beer with, watch our kids play with... oh and that we now have had to share our expertise with in the world of what has now been deemed our "new normal." September is our chance to scream louder than all other months for more funding for research and better treatments for the future generation.
With that said, we will be participating in a lot of Children's Cancer activities this month - but the one we have decided to ask you all to join us on is the St Jude Walk. This year they have moved the walk to September 26th -- a big change from the end of November that it has been on in years past. Location is still at Power & Light on that Saturday morning (9 am walk starts, registeration opens at 7:30am) and as always, we want to show Avery that we stand beside her, even when she isn't in the throws of treatment. Every day is a struggle for her....it will never be easy, and she will always have deficits that keep her from being like the other kids. As she gets older these will be more obvious to her and will start to affect her psychologically as well as physically. So please join us - it's a short mile walk in nice weather and she loves to see everyone. Whether you join the team online, donate to St Jude on her site, or just show up the morning of -- we don't care. Someday we want to look back and show her what an amazing support team she had all those years - even after the active treatment ended, because for her it hasn't ended...its been replaced by therapies, daily shots, new drugs, special ed classes and adaptive learning styles.
To join TEAM AVERY: http://fundraising.stjude.org/site/TR/Walk/Walk?team_id=165836&pg=team&fr_id=40431
Jenn & Jeremy
Posted by Jeremy, Jenn and Avery at 9:40 PM