Week Four Lucas Clinical Trial Update

 4/4/21 Easter Sunday

We opened the Easter Basket we got from the hospital while video chatting with Daddy so he could watch! We also watched General Conference (church of Jesus Christ broadcast) both Saturday and Sunday. 

Dr. Day-Salvatore came to visit and we had a nice chat. We talked a lot about the clinical trial, science etc. She bought us each a nice coat and Lucas a bunch of onesies. It was very thoughtful of her!

Easter Basket the "Spotswood Municipal Alliance" donated to kids at the Hospital on Good Friday.

PJs the nurses gave to Lucas on our way out the hospital.




4/5/21 Monday

Relaxing Day & New Stuff

Today was a calm day. We did laundry, played around in the hotel room, went on a walk, explored outside and talked to my parents and our family on the phone.

New Stuff:
Opening and shutting the door - He gets on his tippy toes, pulls down the handle and walks backward or forward on his toes to shut/open the door :) Sss/Shh sound and drinking from a sippy cup with a straw.


We think we will leave to go home on May 1st. We left home on March 12 so that will be about 7 weeks. I'm tired though - we'll definitely be ready to go home when the time comes.


Evan has been doing well I think. I wish I could take care of him, but I am so grateful to everyone who is helping take care of him at home! They are doing a great job! When I get back, I am going to hold Evan every day and just cuddle with him so much! I miss him.

      

Evan has an amazing friend named Katie who is in his class and loves to help him throughout the day. She is just the sweetest!

Cathy (Brad's Mom) is staying with the family and taking care of everyone! She made some bibs out of thicker material for Evan since he was drooling through so many bandanas. Love them!


4/7/21 Tuesday Something New
Lucas learned how to climb up on the dining table chairs. Not good! As long as I keep them pushed under the table, he can't do it for now. 

4/8/21 Wednesday - 7 day Post Tests

Brad's Birthday was today! I sent him a plant... sorry Brad. Well it was a snake plant, so cool... right?

Went to St. Peter's and did all the usual tests - Nothing too invasive except taking saliva, he hates that! Blood work, Physical exams, questionnaires, stool and urine. He got looked at by Dr. Day-Salvatore (Genetics) and Dr. Lastra (Neuro).

Later Lucas and I drove over to a nearby lake and walked around. It was really pretty. Lucas liked the flowers. 

4/9/21 Friday 15 months old :)

Today Lucas is 15 months! 

Daniela (Study Nurse) called me to see how we are doing. I gave her an update and told her no problems. They are all so worried about how we are doing ha ha since we are by ourselves. Yeah, at times we are going a little crazy, but that's just life right?!?

We took a few walks today and picked up groceries at curbside. It took 3 trips for me to get all of the up to our hotel room. :) 

Beautiful blossoms on the trees!! This is Lucas' outdoor face - squinty

This was so much fun for me - Lucas didn't notice him, but there was a groundhog not too far from where we were playing. I've seen him come out multiple times now since then. He is so cute!!! I know it's hard to see, but if I get too close, he runs into his hole. 

Loving exploring outside. 

4/10/21 Today we drove to the Newark Airport to extend my car rental beyond the initial 30 days because of a credit card issue we had, I needed to do it in person. Let's just say it wasn't the best part of my day, but I'm glad we have a car, for sure!

A few new skills I’ve noticed with Lucas:

Pointing - I was pointing at his lovey to help him find it and when he saw it he did a little pointing motion toward it. 

Cooperation - I have to give him a steroid medication every morning. I stopped holding his hands down and tried to gently coax him. I squirt a tiny bit at a time into his cheek and then praise him a lot and now he has stopped screaming and protesting. He still doesn’t love it, but he is cooperating!

Shaking Head No - Saying All Done (Ah Dah - not as clear as that!) Signing "All Done" kinda and Signing Bath.

What a big boy!

Talk to you later!