All things good

I know you are all dying for photos I promise they will come soon!! We sold our house in October and have been stuck on a rental with no computer until now. We finally found a new house to call home. I'm pretty excited to finally move. It hard cramming a family and a bunch of medial equipment  and a WALKING toddler into an 800 square feet home. We have a goal to be moved into our new home this week. It's been incredibly hard to find time renovate the new house with work and taking care of Sophia but we are finally seeing the light! I swear I need a clone or 6. One for mommy me, one for nurse me, one for teacher me, one for house renovating me, one for errands me and one to find a beach and relax me! Gosh I need a vacation. We all do! Thank goodness for my hardworking dedicated husband. If not for him we would not be nearly as close to the move date. I cannot wait for Sophia to see all the new rooms she will have to explore!!!

Sophia has been marvelous lately! We did have an unfortunate stay back in Riley at the end of February for pneumonia ugh! She is now back to her fab self. She has mastered the walking thing. Expect she has incredibly poor balance because of CHARGE. She tumbles and falls often. I swear I'm getting her a helmet..seriously. She just awesome. Her personality is spit fire and she makes me laugh out loud daily. And man she is a smarty pants. We had her annual review for therapy services last month and she scored a 25 out of 20 on her cognitive abilities! I knew it! This girl is a wiz. She can now count to 20 in sign. She has masters her colors. And she probably knows over 200 signs. She even out signs me half the time lol. She is starting to learn to communicate with her iPad too. And believe this... We had the big talk about her starting a developmental preschool as soon as she turns 3!!! I can't believe it!! I am so proud of her. Speaking of which, Sophia had an appointment with pulmonary last week. They took Sophia's trach out during the appointment and she didn't freak out.
She sat for several minutes without freaking out. So the doctor decided to try something and covered Sophia's trach site with her rubber-glove covered hand. Sophia again didn't freak out, turn blue, cry or anything.. She actually smiled and even took a breath out of her mouth!!!!!!!!!! Do you comprehend how AMAZING that is!!! Huge huge huge improvements!! So much so that the doctor was so impressed they scheduled Sophia a bronchoscopy for tomorrow to check her airway. Tomorrow will be Sophia's 10th trip to the OR for a procedure in which she will be put to sleep. Though the idea of putting her to sleep is always scary the purpose is positive! After the scope results are back and all looks well, we go back in on the 28th for another sleep study for decannulation!! OMG I can't imagine a life without the trach but I sure do dream about one!! I have every limb crossed for these next few visits to Riley for amazing outcomes!! The realist in me or the part that doesn't want to get hurt again is saying she will probably fail the sleep study. However, I have an optimist side that never hides! All we can do is pray! To get to these points at all means Sophia has already succeeded in some aspect or another. I take satisfaction in that! So be thinking of us and Sophia tomorrow and definitely on April 28th!!!!!!! It could be a whole new world.

I also want to share that I spoke at my former high school last night about our Riley story for a fundraiser benefiting Riley children's hospital! I was surprisingly calm. No one knows that story better than I. I went there to share a true honest to heart story that is near and dear to my heart. A story in which the ending has not been written yet. I did find myself having to choke back the tears a few times as I was recalling some pretty powerful moments to us. I hope Sophia's story was impactful and the school raised a lot of money for Riley. Riley truly is that amazing place we all hear about but deep down never want to visit until there's an emergency and then it becomes the place you thank God for. I even introduced Sophia at the end of my speech and she used her iPad to say "hi my name is Sophia". Gulp! It was a very proud moment for me. And I was so happy my family came out to support me!

April forecasts to be a very busy month for the Rhodes family!  Teaching  is wrapping up and is always very busy as we prepare for that much anticipated summer break, the hubby is a full time real estate agent now and he working very hard for our family (and yours too), Sophia has two HUGE procedures this month that needs lots of prayers and good juju, and we are moving into a new home! Yay for the Rhodes family adventures!!!