These posts are related to both our Cerebral Palsy (CP) and Selective Dorsal Rhizotomy (SDR) journeys.
Evelyn had a pretty good night last night. She slept off and on, watched a lot of TV, drank a fair amount of apple juice and seemed comfortable. Her night nurse was also great! Things changed for the worse around 6:00 am when she experienced her first muscle spasms. I am trying to be as honest as I can on our blog about our experience and those 10 to 15 minutes she was experiencing the spasms were so horrible! She…
March 7th, 2018 will forever be the day Evie’s new journey began! Every day after today she will be living a spasticity free life! For those that know about spasticity and what it does over time to one’s body knows how big of a deal this is! Last night we all slept pretty well actually all things considered. Perhaps we were just exhausted but when I woke up I felt pretty calm. Even Evie last night knew her tricky leg…
Yesterday Evelyn attended several pre-op appointments. Before we left our hotel she was not happy. She kept saying she didn’t want to go or meet Dr. Park. It was hard to hear her say these things as tears welled up in her eyes. We promised her there were no needles and it was more of a meet and greet type day and a chance to show some new people all the great things she can do. There was also a…
It has been a busy 48 hours since we have arrived in St. Louis but we have arrived and are well! After two days of travel (one snowy day, one sunny day, two pretty happy kids, lots of Moana singing, Bubble Guppies watching and snacks), we arrived at our hotel on Friday afternoon. We knew we were in St. Louis as soon as we saw the famous arch! After getting organized and settling in, we explored our hotel and…
Tomorrow we will be making our way to St. Louis, Missouri and we will arrive on Friday. One week today Evelyn will be having her life changing surgery, Selective Dorsal Rhizotomy (SDR) with the amazing Dr. Park at the St. Louis Children’s Hospital. Time has flown by! Even though we have been getting organized for days, it doesn’t feel like it is all really happening and I bet it won’t hit me personally till we are at the hospital on Monday…
The start of February is a very busy time for us (hence the lack of blogging) as it consists of my birthday, Evie’s birthday and a few of Evie’s best friends’s birthdays. Evelyn also has been going to physio four days a week in addition to all the fun events we have been attending. Needless to say, it has been busy! The time has flown and we leave for St. Louis in 11 sleepies (yes, I still do these types of…
No matter how many ways we could say thank you, it will never be enough to express how grateful we are for everyone’s support! We launched our fundraising campaign officially on October 23, 2017. It was really hard to make that GoFundMe page public because it was so personal. So glad we did because today we are amazed to announce in only a few short months we have achieved our fundraising goal!!! When I say WE, I mean every single…
On Friday, January 26, 2018 we held our first “official” fundraising event for Evelyn in support of her life changing journey. It was a fantastic evening! When we first started discussing this whole fundraising aspect of Evie’s SDR journey, it was really important to me that we held an event for families. We have such wonderful friends and many of them I met during my mat leave with Evelyn. I have known their kids since they were small and they…
Happy New Year! It is only a week into 2018 and a lot has happened! The biggest news is we now have a date for Evelyn’s surgery!! Over Christmas we asked to be put on the cancellation list for SDR. Most of the families we know who have gone through this did the same and they all went earlier. Due to the overwhelming support we have already received, we knew we would have enough funds to pay for the initial…
It is not uncommon for a group, company or sports team to have their own language, their own abbreviations and their own acronyms . The special needs and cerebral plays community (CP) is no exception! It took a little while to figure out what some other members of the CP community were talking about when I first started reading various social media groups. Luckily some of my fellow CP parents helped this Mommy out! This post will focus on acronyms…