Day 264 | JUNE 01, 2022
Good evening, Friends, today is day 264 of our new and amazing life!
Today was our first day of doctor appointments! We had two assessments at UVA PT and OT, they both went very well and we are very excited to see the progress Charlie will continue to make here at UVA.
We are continuing to learn that everything takes longer to accomplish and that is ok, we just need to allow it more time.
It was great to see how Charlie impressed both of her strength, I guess her file looks a little different from what Charlie actually is 🙂
The two appointments together accounted for a little over 4 hours of consultation and today Charlie also had wound care, and that took 3.5hrs, to say that she is tired it is an understatement.
Today I am pleased to say that it was better than yesterday, and I am grateful for that. One day at a time is the best approach on this phase so far.
The one thing that I am learning is to have patience and try to have no expectations, without expectations there is no frustration, but it is so much easier said than done! But I am trying my best and today I worked.
Our baby Julien had a rough night, he is teething and he ran a fever all night and mostly of the day, poor thing, he slept a lot today, but he was able to eat, drink and had wet diapers, so he is ok. I hope he feels better soon, poor baby.
Charlie was very heartbroken to see her baby Julien not feeling too well.
Huge thanks to my mom for staying up half of the night after I was up for the first half, her help is beyond appreciated!
Tomorrow we will head to Richmond for Charlie's first Pain management appointment, this is an important step on her journey, pain is a cruel companion and Charlie has been followed by this unwanted partner since the age of 19 months old, when she was diagnosed with JRA. (Juvenile rheumatoid arthritis).
We are getting ready to start the pre-sale of our book, the date will be announced in the next 48h, stay tuned! We are beyond excited to share this incredible journey with you in a story format, this journal is a fantastic way to give updates and express my thoughts, but it is a different experience to read in an actual book format, and with no grammatical mistakes 🙂, there is a lot of details that I can’t share in here, that will be in the book, and we can’t wait to reveal it to the world! I am so grateful in advance for your support with the book pre-sale!
Tonight, Charlie read books to London, since Julien was already at sleep, and it Charlie had very emotional conversation with London, our little boy is having a hard time with this transition, and Charlie was a little heartbroken with some of the things he is upset about, like why can’t mom swim in the pool with me? He doesn’t think that it is fair!
It is very hard to explain to a 5-year-old, how life can be unfair at times, we know that very soon London will start to see a therapist, but it is hurtful to see him struggling with his emotions, it is hard for me and Charlie to see the hurt our boys are going through, but we also know that this pain and suffering will make them strong and wise, they may not realize now, but we have so much to be grateful for!
Charlie is alive! That alone is a reason for us to rejoice! Thank you, God, for the incredible miracle gifted to us!
Please pray for our family, we continue to need God’s grace and your prayers and support!
May God Bless You!