So aside from our corner suite and bottomless graham crackers and mocha fudge coffee and of course, our Donna, [for those who don't know know, a Donna is hospital fixture who has worked at the hospital since it broke ground 100+ years ago and whose main purpose in life is to take care of the mommies of sick children], the 9th floor is NOT the PICU... which is, unfortunately, where Master Cheeks decided to book his most recent weekend getaway.
And while Daddy thoroughly appreciated his efforts to secure a larger suite for the Ravens game opener, we really wish he had gone about it a different way.
Master Cheeks has pneumonia and is on 100% oxygen. Unfortunately, this seems to be the least of our worries. On Monday, we have a "family meeting" (both Carlos and Princess are still anxiously awaiting their invitation) to discuss Master Cheeks' diagnosis and prognosis following his marathon course of scans, tests, blood draws, spinal punctures etc... [all of which I should add that he endured with such awesomeness and spunk I was left, once again, in awe of this little guy's very big character].
In attendance will be members of Master Cheeks' neurology, genetics, pediatrics, respiratory, feeding, occupational therapy and physical therapy teams as well as a host of other fellows, residents, nurses, case managers and social workers.
I'd be lying if I said I wasn't scared. Hoping nobody minds if I invite our Donna, too...
And while Daddy thoroughly appreciated his efforts to secure a larger suite for the Ravens game opener, we really wish he had gone about it a different way.
Master Cheeks has pneumonia and is on 100% oxygen. Unfortunately, this seems to be the least of our worries. On Monday, we have a "family meeting" (both Carlos and Princess are still anxiously awaiting their invitation) to discuss Master Cheeks' diagnosis and prognosis following his marathon course of scans, tests, blood draws, spinal punctures etc... [all of which I should add that he endured with such awesomeness and spunk I was left, once again, in awe of this little guy's very big character].
In attendance will be members of Master Cheeks' neurology, genetics, pediatrics, respiratory, feeding, occupational therapy and physical therapy teams as well as a host of other fellows, residents, nurses, case managers and social workers.
I'd be lying if I said I wasn't scared. Hoping nobody minds if I invite our Donna, too...
With every post, your family amazes and inspires me. Lots of hugs and good thoughts heading your way! Oh...and the boys look adorable in their Ravens gear but....GO EAGLES!!! (as if they have a chance this year)
ReplyDeleteI LOVE that the doctors are totally on top of this and have run a whole host of tests for Hayden. It sounds like that meeting on Monday is finally going to give you some solid information along with a plan of treatment so Hayden can begin healing and come home! Thanks for the update, and as always, you guys are in our prayers!
ReplyDeleteThis comment has been removed by the author.
DeleteI could not have said it better! I agree with everything you said!
DeleteBest of luck with the meeting Bernadette. You are amazing!
ReplyDeleteOh my dear! Of course it is scary. Of course you want someone to be taking care of you and Duane as well as helping to hear what is being said.
ReplyDeleteTape recorder would be good idea.
I am so glad that you will not be alone at this meeting and have Total Faith you will be your normal smart, articulate, strong self and insist on really understanding the choices and issues that come with every choice. Do not let yourself be pushed and know you have support from all around the world.
VERY best wishes for all 4 of you and will be awaiting meeting reports with hope and caring.
old ca grandmother with crossed eyes and fingers and toes!
Now does that little boy adore his dad!
ReplyDeleteHe will be fine because he has you!
Kathrin
Oh, dear you and Duane for having such a nervous meeting ahead. I am thinking of you many days per day, worrying for little master. I hope his pneumonia passes quickly with correct medication. You are so amazing. Sending you tons of strength!!
ReplyDeleteMeetings like that are always stressful for me because it no matter what information you get it's hard to absorb it all. Here's hoping that you get good information and time to digest it. I hope Master Cheeks is feeling better soon so you can all breathe easier.
DeleteFirst, holy crap WELCOME HOME!!! Second, we are sending good thoughts for Monday. It's wonderful to see Dad holding his little guy. Can't believe it's already football season.
ReplyDeleteK
Praying for Hayden and praying that his tests come out good. Hopkins will cure his pheunomia and he will be feeling up to par soon. He's going to be a strong boy in no time. Our thoughts & prayers are with you all for Monday. You & Duane are inspirations to everyone all over the world sweetie. Stay strong, sending all our Love, Linda & Joe
ReplyDeleteMr. Cheeks looking with love at His Daddy! Wonderful to see. Now he needs to beat this illness. Hope you and Duane are able to get some real rest and that your weather is cooperating with you.
ReplyDeleteO.C. G.
Praying that you get lots of GOOD information at your meeting. Deep breaths. <3
ReplyDeleteBest wishes!
ReplyDeleteMaster Cheeks is an amazing little man - he obviously takes after you and Duane. Hoping that everything takes a turn for the better for him and you both. He is a strong little boy and obviously a fighter so I know that things will start to turn around soon for him. Love the picture with his proud daddy, - although I think Hayden might look even better in an Eagles jersey - and sending prayers for a productive meeting with young Master Cheeks new medical team.
ReplyDeleteSo many prayers for you right now. Kick it in the booty, master Hayden!
ReplyDeleteAt least there is a loving shoulder not too far away to lean on during these difficult times. Extending my big cyber shoulder for use at any time. Loving strength to MC.
ReplyDeleteOh Bernadette I can't believe Hayden has pneumonia please give Him a kiss and hug from me. Monday is a long time to wait, thinking of you and sending prayers and hugs to you xx
ReplyDeleteThinking of you tomorrow and hoping that the results just mean a customised plan to get Hayden on his right path to ultimately get home with his family as soon as possible. He is surrounded by a lot of love quite obviously which I am sure he feels.
ReplyDeleteIf it helps, I think we are all anxious and scared for you too. Safety in numbers and all. At least the meeting will give long awaited answers that will allow that path to "normal". You can handle it. We all know it. Give MC a cuddle from all of us, we are, and always will be, pulling for him.
ReplyDeleteWishing you all the very best with these next challenges.
ReplyDeleteFrom a mom who's been where you are now: Knowing exactly whats what is so much better than not knowing. First you grieve for the little boy you planned on, and then you throw heart and soul into giving the one you have every opportunity for a happy and comfortable life. You are already well into that process. Thank goodness for your Donna, what a blesesing she must be. Love and strength to all of you, "one day at a time."
ReplyDeleteWow, it just never ends for you guys. As scary as tomorrow's meeting must be, I'm sure it is a huge relief to be in the US medical system where everything is more familiar, and of course to have Duane by your side through all of this. Best wishes for tomorrow!
ReplyDeleteGood luck at your meeting Monday..hopefully will get some answers at last (and a plan!!!) Hope princess is settling in to her new home...I know it's a lot different than India for her...the smells, the sounds, the people!! Take care and fingers crossed for you guys on Monday!!
ReplyDeleteSending positive vibes your way! Just know that a whole congregation from Frisco, TX is praying for you, Duane, Princess and Master Cheeks!
ReplyDelete-Viviana
Sending positive vibes your way! Just know you have a big group of people from Texas praying for your family's strength and for Master Cheeks recovery!
ReplyDeleteThat photo of Duane holding MCs is awesome. So glad you are home and sending all kind of positive thoughts and prayers for a good prognosis as you move forward. BIG HUGS FROM HAWAII.
ReplyDeleteI hope Cheeks is going to be okay!!! Hope you're loving being at home!!!
ReplyDeleteBest of luck at your meeting today! And I hope Master Cheeks is feeling better and improving from the pneumonia.
ReplyDeleteThinking of you today. I hope that you get answers and a plan that you are comfortable with. Hugs.
ReplyDeleteToday is the meeting day, so I hope it is all going well enough. At least enough to come up with a game plan. Fingers crossed for that cute little guy! You guys are in our thoughts.
ReplyDeleteWe were all thinking of you today and hope that you have some questions answered! Please know that your neighbors are pulling for you guys, and that you always have a helping hand or a listening ear whenever you need it!
ReplyDeleteWe were all thinking about you today!! Please know that your neighbors are pulling for you, and we are always here with a helping hand and a listening ear!
ReplyDeleteWELCOME TO HOLLAND!!!!!!
ReplyDeleteI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
c1987 by Emily Perl Kingsley. All rights reserved
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Bernadette,
You have visited SO many countries on your quest to be a mom, and so many more to bring this family home to Duane. What's another country, right? Holland is beautiful.
Enjoy your new family.
Sadie
(Cdn GS)