Riley had a visit with Dr. Hanna today.
We are looking at cath number 20 being scheduled for either the week of February 13th or the week of the 20th.
Time is just Flying by. I know mid February is a lil ways off, but it seems like we just cathed him. Well probably cause they just did January 9th!
Its just a Crazy Merry Go Round to be Riding in…..
Some Pictures from todays visit.
Dr. Hanna was Silly as Usual with Riley:)
Finally Riley pointing to the door saying… Home! Home! 🙂
Riley is Literally Christian’s Little Shadow:)
I just wanted to share something that happened today ♥
A friend stopped by with one of their friends. My friend’s friend said.. Oh I can see Riley was coloring today! I thought No.. Then My friend jumps in and says… No that’s not marker on Riley’s fingers… They Always look like that! Then I realized what he was talking about. Riley’s finger tips are purplish because of his Cyanosis! I guess I’m so use to seeing it that it didn’t click at first. But…. Apparently to others it looks like purple marker on Riley’s fingers. That’s Our Reality ♥
Seems Riley undid his extension while I went to get his meds. At Least I’m assuming thats when he did it. Needless to say…about 150 ml of feed plus 5 meds literally down my chair. Called CHOP and he is ok to wait till his next dose tomorrow of those meds especially since we don’t know if he got them or not. Now… To call the furniture company tomorrow and Hopefully our warranty will replace the chair. Why? It’s all down inside and we can’t have moldy furniture with Riley. Grrrr…. Live and Learn…. ♥
Riley had an appt in pulmonary today. Nothing much to report on as far as Riley and/or any changes.
I did want to share just a lil something with you all though. When I was talking to Dr. Kreindler I said how Crazy this whole thing is. Riley needs transplant in order for there to be any Hope of a life for him yet I feel like the day we transplant him we are starting the countdown to the day we have to let him go! Dr. Kreindler said… I Know but I’m glad you are going into this knowing the possibilities of what could happen. Sadly the odds of survival for the first year just arent that good! Doesn’t mean Riley can’t beat the odds but he will certainly be Fighting them!
So I will end this post saying…. Can you Imagine?!
Ok.. I know some of you can but I Believe Most Cannot!
To have a child, your child, growing up in front of you… now calling you Mom and Wanting your attention. That same child who should out live you actually has a “Plot” so that I know when that day comes he will not be Alone and will be with my family ♥
I wouldnt wish those thoughts on another parent.. EVER ♥
Here a couple pictures from Todays Visit with Dr. Kreindler ….
Riley and Kathy… Getting ready for the IV.
Mommy suiting up to take Riley into his Cath.
Mommy and Dr Jobes..
Sleeping after the cath.
During the reaction.
Yesterday…while at CHOP we saw some of the people on “Our Team”. After the cath I was talking to some of our team and mentioned how crazy it was putting Riley through this every 8 weeks and even crazier that he has been waiting over two years for transplant. One of our team members said to me…. If you Ever decide you dont want to do this anymore… Dont be afraid to call us. I thought and Said… No.. thats not what I ment… I will Never quit on Riley. Even when it seems there may be no hope… I will be the one Still Holding On!! When I went to bed last night I thought of the conversation and just prayed that Im not being Selfish! I know Riley’s Journey is Far from Over but whenever it may be I dont know that Even then I will be able to let go! ♥
Riley is back home. He is still a little buffy. We are continuing the Tylenol, Steroid and Benadryl for another 24 hours. Riley is certainly Very Happy to be home! He must have said Home 1,000 times while at CHOP ♥