Today is the day we celebrate: Steven’s 18th Birthday!!! Our miracle boy has defied every odd and greets his birthday with hope, courage and his undeniably strong will to live. For those of you following Steven’s journey closely, I know you join us in gratitude. Here’s a quick recap of his weekend for you.
Steven didn’t sleep a wink Thursday night, despite needing some good sleep to slow his metabolic system down. The doctor planned to start him on a low dose of steroids to assist with the other drugs to fight his infection. Steven had a lot of questions for the doctor Friday morning since he was present during the conference on Thursday where they discussed the muscle weakness around his lungs. That night afterward he was asking his dad if he was going to die from the infection, and he wondered if there was any kind of surgery they could do to save him. His parents were incredibly strong, fighting back tears as you can imagine, explaining to him that the doctor didn’t say he was going to die, but that she had to be honest in giving her medical opinion. They further explained that it is ultimately up to God, as He is the true Physician. Steven felt better after asking the doctor more questions Friday morning, but his mom said it’s so hard to see the fear of dying in your child’s face.
Steven actually had a great day on Friday after all of that. During Physical Therapy they even stood him up, and he was able to stand and hold himself up straight!!! This is the first time this has happened since he’s been in Tulsa, so it is amazing. His mom said he is so aware and is talking very clearly (at times he has been quiet or hard to understand). He was asking several questions and had some long talks with his dad. His mom even fed him some strawberry Jell-O (he hasn’t had any type of solid food since being back, either – only IV nutrition – wow!).
Birthday cards kept showing up in droves this weekend! Thank you everyone for sending them!! Since we Aries like to celebrate for at least an entire month, if you’re late in sending, go ahead and pick up a card and feel free to send it along to him to continue to cheer him on during this battle. Send it to him at:
c/o Denise Sargent
10111 S. Sandusky Ave.
Tulsa, OK 74137
Sleep continued to elude Steven every night. He was so cold during dialysis on Saturday that Denise told Steve he should get in bed with him and hold him, since human heat is better than blanket heat. She thought it would relax Steven enough to actually go to sleep and it worked for both of them for a spell. She wanted to take a picture, but was afraid the flash would disturb them and was so happy he was finally sleeping. It wasn’t nearly long enough though, and Steven wasn’t able to sleep much during the weekend, which was a worry.
They continued to try sleep aids, which didn’t work. Denise said she thought she got more sleep taking care of newborn twins than she does hanging out with Steven at night. But yesterday, they discovered he needed some medicine for high blood pressure, so about 20 minutes after getting it he was out like a light. Finally!!! They found something that worked. They did an X-Ray of his lungs yesterday morning and said his left lung was mostly all white. There was a small pocket of black at the top of it, which meant he was only getting a small bit of air flow. He is back on the Bipap mask again to open up that lung. Hopefully this will do the trick.
The nephrologist is excited to see Steven’s blood pressure back up because it’s a sign he’s getting better and back to normal, hopefully beginning to overcome the infection. She made sure he knew that, saying, “Hey kid, you’re getting better, so you need to start acting like it!” This was the message Steven needed to hear, and I’m sure her words helped as much or more than the medicine. Needless to say, Denise really liked her. Turns out this doctor has also survived cancer twice, so she knows exactly what Steven is going through.
Right person, right time, right solution. Funny how that works. 😉
And here we are today … Steven’s 18th Birthday!!! I celebrated my 40th birthday this weekend, and I was so touched at the number of friends who said how much Steven’s journey had touched them, continuing to ask after him or give donations. My darling friend Jaime gave me a necklace that said “Believe” and we all made a birthday wish together for our sweet boy – when I shared this with Denise, we deemed the days to be BELIEVEdays instead of birthdays.
So today, we celebrate Steven’s 18th BELIEVEday!!!! Because we believe in him, and in his recovery. The fact that he is here for this day is truly a miracle, and we are all so grateful. Today Steven is wearing his breathing mask to open his left lung, which makes it difficult for him to communicate. Yesterday he had motioned for pen & paper yesterday, writing, “When can I have a Dr Pepper?” His parents were elated! They didn’t know if he was still able to write or not.
His mom ran to Walgreens and bought him a dry erase board so he could communicate while wearing the mask. These are the notes they exchanged this morning. He only mispelled the word mask. This boy continues to astound and amaze. He has the strongest will to survive I’ve ever seen, and today we celebrate Steven.