The last few weeks have been full of excitement and anxiety for us. As a family we waited for the results of the chromosome tests on the new baby. Luckily, they came back as negative for any of the more common chromosome issues, along with a strong heartbeat and a pink bow. Then we anxiously waited for the end of our first year of Kindergarten - which was a BIG deal for a pretty excited (and newly deemed) 1st Grader. Then we followed it up with a trip to St Jude for our 4 month scans. They resulted in a stable read and graduation to 6 month scans. May has been a whopper for this family and I am so ready for some relaxing summer nights and some weekends by the (plastic, inflatable) kiddie pool in the backyard, sans my margaritas.
We have had a very blessed month and are praying for an extremely uneventful next 6 months as we await the arrival of our newest class act and Avery's next big set of scans. She will be headed off to Cancer Camp on Sunday - another full week without us and total big girl camper stuff. She is really excited for that and for the rest of the summer spent at the JoCo Parks and Recs program swimming and playing with all her friends. She has made so much progress this year in so many areas and we couldn't be prouder. Today the PT therapist at St Jude actually said the words "we will be walking unassisted at some point." in 6 years no one has ever said that to us -- not here or at the KC Rehab Center or at CMH. We were kinda dumbfounded. She has also put herself back on the charts (albeit at 1%) but she's back on there...she weighed in at 35 lbs and 39 inches! Holy crap. Amazing a daily needle and some drugs will do for ya.
Tomorrow we head over to meet with the Urologist to see what he has to say about her latest bladder study. We definitely have not seen any improvement in this area so we are hoping he has some more ideas to try. After that appointment we start the 9 hour journey home to KC to see Emmett and celebrate our month of wins! Go Team Avery!
Jenn & Jeremy
