Sweet angel.
Friday, July 10, 2015
Wednesday, July 8, 2015
Brynnik is home from the hospital
Today was one of the best days ever.
Brynnik was released from Children's Medical Hospital today.
The entire staff and team from the D6 Wing provided him with an amazing send-off, including his very own banner and some presents to take with him. It was an amazing moment.
We then "blew this Popsicle Stand" and were off to be greeted by the amazing staff at SkyHouse Dallas. Brynnik arrived to his new bachelor pad which was decorated with a Welcome Home sign and balloons.
After a meeting with the home health nurse, setting up Brynnik's feeds and medicines, we went up to the SkyDeck to grill sliders while taking in the amazing views of downtown Dallas. Brynnik, Darrell, Sienna and I hung out with Chelsey, Richard, Abigail and Benjamin (our new neighbors) and had some great laughs before wrapping up our evening.
What an amazing day!
https://www.youtube.com/watch?v=6PwQG6dCptA
https://www.youtube.com/watch?v=PWSqSrlA_ag
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| Brynnik is coming home! |
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| THANK YOU D6 TEAM for everything!!! |
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| Welcome Home @ SkyHouse Dallas - thank you SkyHouse team, you are amazing |
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| Downtown Dallas views |
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| Daddy grilling sliders on the rooftop |
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| She loves dressing up in my accessories and playing "Jenny dress-up" |
Tuesday, July 7, 2015
Hospital release and gratitude
Today Brynnik
had his central line removed and replaced with a port. He was groggy and
wrapped like a little burrito but very excited to be released from the hospital
tomorrow.
We are SO
VERY EXCITED to have the little Unicorn on his first day of hospital release. Once he is discharged he will move into his
very own bachelor pad at SkyHouse Dallas. We were talking about it last night and he is stoked to have his own pad, at nine!
This has
been a very long and hard road for Brynnik and a challenge for us all. Brynnik's amazing strength and faith in God, the power
of prayer, the compassion and love from all of our family, friends, coworkers,
neighbors, nurses, doctors and even strangers have been a true testimony of grace.
We also want
to say THANK YOU to everyone as they continue to love and support us as we move
into the second 100-day phase of Brynnik’s recovery. A special MEOW shout out to our friends who were willing to take on 2 wild-n-crazy cats, including my 3 cat lady friends and our 2 kitty-loving neighbors who asked to take on Lacey
and George for 3- to 6 months.
In the end, we decided on
SkyHouse. It’s the absolute best
decision for Brynnik’s health. The
Doctors and Nurses of the D6 Wing are very supportive of the decision to not
bring Brynnik into a home/establishment built pre-1930’s given the dust, dander
and air quality systems in older homes.
Starting tomorrow Brynnik begins the next stage of his recovery. Thank you for all the blessings and answers to prayer. We have so
much to be thankful for. We are very
blessed. We are very thankful.
All of our love
The Johnson Family
Saturday, July 4, 2015
Brynnik's first apartment
Yesterday we signed the lease on Brynnik’s “bachelor pad”
for the first 100-days after his release from the hospital.
The first 100-days are absolutely critical to his care and well-being,
and Darrell and I feel whole heartedly that putting him in an apartment which
is brand new construction, hepa-filtered apartment unit, where he will be the
very first resident of his unit, is the most responsible and smartest option
when it comes to his health.
Brynnik is not allowed to be around plants or pets for the
first 100-days. He will be leaving the
hospital on a feed and 20+ pills a day, so he still has a way to go.
Brynnik will be released from the hospital next week and
will move into SkyHouse Dallas upon his release. He will stay there during all the days and
nights we have him, which is 50% of the time.
We showed Brynnik his new “digs” yesterday through photos
and a video, and he is super excited to move into his new place.
Darrell and I care only about his health and what is best
for him, and we are so thankful to the SkyHouse team and everyone at Simpson
Property Group who made this happen for us. I work with the most amazing and
talented people, and I am so grateful to them, and thankful for their kindness,
care and compassion as our family has been going through this trying time.
Here is to the next 100-days!
Video of Brynnik’s new ADA studio unit below:
Brynnik's first EZ Ride without his IV Pole
Yesterday afternoon, the nurses took Brynnik off his IV Pole
for a few hours, and it was the first time Brynnik was able to experience
walking without being attached to anything. It was a true moment of freedom for
him. Darrell and I were so happy to be there to experience him slowly start
walking around, then jumping around without having to drag his heavy IV Pole
full of tubes, wires, cords, bags and feeds around behind him.
He then go onto his EZ Ride bike and took off for several
laps around the D6 Wing at Children’s Hospital.
He was going so fast we had to get him to slow down a little.
My favorite part was when he was seeking up behind the
nurses at the nurse’s station and surprising them. He was able to go into “stealth
mode” and then started humming the JAWs attack music as he got closer to them.
SO much laughter, so many smiles, it truly was a remarkable
moment for Brynnik.
Links to Brynnik’s videos:
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