I am having a rough night tonight. I don't know why but this just happens sometimes. Gavin has been doing great but yet I sit here crying...thinking about the future. Praying that Gavin will be healed so he can live a healthy and very long life. Hating that my sweet boy has these diseases. But knowing that he is a very strong boy and will keep fighting.
The next month is going to be busy for us. Gavin has his Remicade, Solu-medrole & IVIG infusions on Thrusday (that is the same day as his class picture so thinking about changing his infusion to the day before. He is a BIG part of his class and I don't want him to be missing from the picture). He will also start his first round of antibiotics to prep him for his cataract surgery. Friday is his pre-op appointment for his cataract surgery. April 2nd we are having his 6th birthday party :) April 4th is his surgery date then post-op the next day. April 7th is his actual birthday. The same day he is scheduled for his Actemra & Solu-medrole infusions. Then the following week is another eye appointment to follow up with his surgery. The week after that is another infusion Remicade, Solu-medrole & IVIG. And so on with the infusions like normal. On the 25th of April we are finally meeting with the Nephrologist...then we will find out what they are seeing on his kidney from the ultrasound...I am so nervous about this!
I guess all of this is starting to hit me and reality of his surgery is becoming just that...a reality! Although I am so excited about finally getting this done...I am just as scared. Gavin has been under anesthesia more times then I can remember but it never gets any easier. Signing that paper everytime before his procedures gives me such anxiety. UGH!
So, please keep Gavin in your prayers for a successful surgery and quick recovery! And please pray that he stays healthy enough before, during and after. We will keep you updated on how he is doing.
Thank you all
XXOOXXOO
Julie
Gavin is a strong boy, and is lucky to have such a strong parent as yourself. I will keep him in my thoughts and prayers. Best wishes for all the medical procedures, the class photo, and the birthday party!
ReplyDeleteAw, Julie... We love you guys! You are always in my thoughts and prayers. I think we all have nights like that. Some days it hits me really hard. I think it will always be like that. And you have had to prepare him for surgery so many times!!! Ugh! What a breakdown you must be fighting. You have so many prayers coming your way, and Gavin is such a strong, good little man. Hugs to you & your boys!
ReplyDeleteThank you guys!
ReplyDeletexxoo
ALWAYS praying for Gavin and your family! Hey, he shares a very special birthday with my 1st born. She will be 13 this year.
ReplyDeleteJulie,
ReplyDeleteI wanted to share this article with you. It puts a high note on everything I think. It links a early diagnosis of RA with a decreased occurrence of joint destruction and improved chances of DMARD-free disease remission.
http://www.dailyrx.com/news-article/timing-everything-10674.html
My 6 year old daughter was recently diagnosed with UC as well, and I have so many questions for you, can we talk via email? grace_photos@yahoo.com
ReplyDeleteMy heart goes out to you and your little sweetheart, Gavin.
ReplyDeleteOne of the things that I keep in mind before my surgeries is this: I'm going for surgery because I need it to make my life better or at least, stabilize it.
When I had surgery for atlanto-axial instability, the surgical cautions were exactly the same for if I didn't have them done - blindness, stroke or death. I listen to the cautions/warnings, but don't take them to heart.
Here's to a timely surgery, a quick recovery and greater ease!