an update in photos

I am horrible about uploading my camera sometimes… I found photos from December on this upload.

Finley is doing great… She is getting more verbal every day. She says; Hello, Bye, night-night, no-no (so cute right now, but I know it becomes less cute as they get older), YES!!! (usually with great enthusiasm), Ro-Ro, Octopus (what she says sounds very close, but also very funny), I do, apple (for some reason one of her favorites), num-nums (when she wants milk) and a few other things.

She also is obsessed with dancing and spinning. I will need to get it on video and upload. Let’s see how long that takes me.

And a shameless plug for the Ladybug Run… Have you registered?

A proclamation and a termination….

CDH Awareness Day - now official in Oregon

It is actually quite easy to get a Proclamation in Oregon… You go to the website, you fill out the template, you email it in and/snail mail.. and in our case within a week or so – it was official.  Complete with a fancy  letter with a shiny seal.  Now, I think you must have a valid reason and they wouldn’t approve “Jon XXX Awareness Day” but it was a painless process and I am excited about the awareness we will be able to raise from this little piece of paper.  We need all the awareness and attention brought to this life threatening birth defect so that hopefully it will finally get the research funding it deserves.  I want to see them be able to grow diaphragm for these kiddos in the next 5-10 years so they can stop using Gortex for the repairs.  I would love to find out what causes this defect and if it could be prevented.  There are so many areas of research needed.  If you want to help more go here.

A termination. Well, sort of. Finley met with Early Intervention today to review her annual goals and see where she is at. She met or exceeded all goals and just blew the team away with all the things she is doing/saying, etc. We agreed to make her case ‘inactive’ because there are no areas of concern and really, that has been the case for 6+ months now. She is eligible for services through EI until she is 3, so we want to leave the door cracked in case she does experience some sort of delays down the road (unlikely).  My coordinator has never done this before and I just teared up knowing full well how blessed and fortunate we are.

“There is not the slightest doubt in my mind that the God who started this great work in you will keep at it and bring it to a flourishing finish.” Philippians 1:6 MSG

Almost 18 months

Finley had a check up last week with her Pediatric Surgeon, Dr K last week since she actually hadn’t been seen in clinic since August.  I was happy to find out that they probably won’t be doing the as frequent ultrasounds on her bile duct region and most likely just wait until next October to do another MRI/MRCP to check in to see if her common bile duct has decided to finally truly look at a Choledochal cyst or (what I am praying for) look normal.  Her last X-Ray looked normal, and I am not sure when she is due for another chest X-Ray but as she is nearing 2 – I think they will eventually just be checking for reherniation on an annual basis.  As much as I love everyone at Emanuel, I am happy to see less of them.

Finley is talking/babbling up a storm and is saying more words every day. I just love this stage. Now that she is walking, she and big sister Rowan are getting into more altercations over toys and I am trying to figure out some fair rules… a friend mentioned the rule that toys in common living areas are for sharing, but toys in bedrooms can be deemed “off-limits.” So we are trying that now.  For all the fighting over toys, Rowan does show so much love to her sister and it just makes my heart swell. She is always telling “Finney” how much she loves her, and wants to hold/hug/squeeze/smoosh/lift her. Four year olds have no idea of their strength so I have to rush in and save Finley frequently.

The other big news is that the website went live last night for registration for Ladybug Run! I am so excited that this is becoming a reality. We have established the Ladybug CDH Foundation which will funnel the funds to research; Dr K is about to start a very cool research study which I won’t go into detail about here since I don’t know if it’s ok to talk about yet; and to help CDH families in Oregon.  I hope you all will support us by either walking or running (5K and a 10k) or volunteering. It will take a massive effort to make this happen and I will need every one of you!! Also, for non-local friends wanting to support – I am hoping to have my tax-deductible 501c3 status finalized soon, so donations will be tax deductible.

For now – please help us get the word out about the race by Facebooking, Tweeting, and recruiting friends to register! If you know of any businesses that would like to sponsor, we definitely need sponsors. Right now my biggest needs are getting more sponsors, the T-shirts – both getting product and the screen printing, and finding a printer that I can print some flyers/postcards to leave at businesses for either a cheap rate, or in trade for sponsorship (preferable).  I am so lucky that I have a group of amazing women that have volunteered to be my race committee and are helping plan this event because I could never do this without them.