WEDNESDAY IS SEANS BIRTHDAY!
Oh wow, I honestly cannot tell you all how hectic my life has been. With Sean’s birthday coming up, things being off the wall confusing with me & Chris, and just all kinds of other things around me, I hardly have ANY time for myself! But I seriously cant believe he’s already going to be ONE.
It’s such a miracle, words can’t even begin to describe how thankful & blessed I am for my little miracle.
So much has been going on, making plans for his party, which is this coming Saturday! I wish I had the money to take him out for his birthday, but unfortunately we’re going to be homebodies this Wednesday. I guess it’s not so unfortunate, but oh well. I hope we just have a good day, whatever it is we’re doing!
Now onto the fun stuff….Sean’s last doctors appt, he weighed in at 14lbs5oz! We also took him in for his infusion the first week of May, and no news is good news, the infusion went off perfect, without a single hitch! We have completely stopped the oral fosamax for his heart, and I’m taking him in on Friday to get his heart rescanned to check and see if the calcium is building up again or has stopped (hoping for good news day before the party!).
Our pediatrician also has told us to take him off the Similac NeoSure, and switch him to PediaSure. He’s still not very receptive to solids, and needs more calories, so i’m going to start transitioning to pediasure within the next month or so. He’s been doing great with weight gain still, and he’s growing so much its incredible! He’s starting to outgrow 3m clothes, and so we’re going to move onto 6m soon! I’m super thrilled.
I had my first experience with a “fracture cycle” right after the infusion. It was frustrating to say the LEAST! He broke his hip and left femur in one day, and then his ribs, and then his foot! All one day right after the other, from what seemed to be no reason at all. Needless to say, it was a rough week for me & him. Thank God the cycle is now over, and he’s a happy clam again, but it just reminds me that things can get worse than I sometimes feel like they are.
And more good news! Well, exciting news…I’m taking Sean to Snowflake Camp in July this year! An amazing OI mother&father & dear friends of mine, Chelsea & Curtis Lush, and I are taking a road trip with Sean & their daughter Zoe (type 2/3/4 moderate ; 7 months old) up to Portland Oregon for a week of camp just for OI kids & families! And even though our kids won’t really be “campers”, since they’re too young to do much, I’m still excited to see all my OI family! These people have been there for me with Sean, helping me every step of the way and letting me know that no matter what happens, it’s always going to be okay, and I couldn’t be more thrilled!
My birthday is also coming up in July, on the 19th specifically, and I haven’t thought much about what IM going to be doing, I’ve been so distracted with Sean’s birthday & Camp. Haha. This month has been crazy, hectic, and fun, all at the same time. I can’t believe where life has taken me!
Yesterday, I had a lot on my mind. I’ve had a rather interesting weekend, and honestly, it made me consider my life in a lot of new ways. I grew up learning to never regret the past, and the decisions I’ve made, because at that time, that’s what I wanted. And for years, I never quite understood the importance of that life saying. Through this whole divorce process, a lot in my mind has raced, thinking about what I did wrong, and what could have made things different or better, and realized within myself, that everything happens for a reason. So me losing my “picket fence” wasn’t going to change, and that’s it. At that point, I began to regret ever getting myself into it at all. I felt like I could have seen it before, I could have seen the signs of an impending disaster, and I didn’t. I thought maybe if I had seen where things went wrong, I could have just walked away at that moment and moved on. But then, I look at Sean, and none of the “what ifs” matter anymore. For whatever reason, I never walked away, I never thought about the alternatives to a situation, I just went with it. Truth be told, It’s not like me to do that. Seeing Sean’s sweet face, I now understand why I changed, even if for the brief time I did. Because God wanted me to have him. God wanted to bestow a blessing on me so sweet, so wonderful, and so precious, I had to work for him. I had to bear the wind of a stormy time to get what I now realize is the biggest miracle ever.
So yes, sometimes I do wonder where I would be now, had my life taken a two step in another direction. But there’s plenty of time left for me to make my life anything I want, and whatever mistakes I’ve made and whatever paths I’ve wandered down, it was all worth it in the end, because in the end, I have Sean.
Well everyone, It’s my bedtime. So until next time, be well š
Sean Cain; Handle With Care 
Happy Birthday Sean!!!
By: cheryllookingforward on May 24, 2011
at 4:42 am
have a happy birthday Sean! My little ones birthday was 2 Wed ago. I’ve got # due in Sept!!! OMG can you believe they will be so close in age. Anyways, I just wanted to tell you I’ve been an avid follower of your blog since I saw you on our May birthboard on babycenter. I thought I’d let you know, I’m experienceing some difficulties with this pregnancy. Several ultrasounds have foreseen alot of calcium build-up in one of the main arteries leading into a lower ventricle of the heart. All the doctors who have presently been involved have told me it could be a sign of numerous things and couldnt really tell until she is born. They say it could be a sign of Down Syndrome but who knows. They said they could do an amniosinthesis (dont think i spelled that correct) to see if she does have Down Syndrome but I dont think its nessesary. There are too many risks involved with that and it really doesnt matter if she has it or not. However it weighs heavy on me thinking about her heart. I dont know the severity of it or if its anywhere near the severity of Sean’s OI and I pray that it isnt. I just thought I would share with you.
By: christina on May 24, 2011
at 6:23 am
Christina- There are a few down syndrome “pointers” you can identify during a routine level 2 ultrasound with a neonatologist. How far along are you? If I were you, I would request with your OB to see a specialist, the pointers are short femurs (3+weeks behind gestational age), enlarged skull, & fluid build up at the upper spinal cord/base of the neck.
I hope this helps, when Sean was first diagnosed he was checked for down syndrome & dwarfism, which is why I know the markers of DS.
Sean’s calcium disease is called Generalized Arterial Calficication of Infancy, and althought I highly doubt that it was your daughter has, it’s vital you keep an eye on it. His main affected artery was his Pulmonary, the artery leading from the heart to the lungs. All his other major arteries are also affected with calcium buildup. Treatment is simple if it turns out that this is the case, but it must be started ASAP from birth, as it takes a long time to start working.
my email address is in my contact page on here, so feel free to email me with any questions, or any new updates from the Docs that I might be able to help with. If it’s one thing I’ve learned in the past year, doctors don’t know what theyre talking about half the time.
Best of luck to you!
By: littlewifey05 on May 25, 2011
at 4:17 pm
Happy Birthday little Sean! It’s been awesome to watch him grow over the past year. I KNOW it’s been rough & truthfully I have not gone thru anything what you have with the baby, but i still get it.
There is a google commercial out where the dad writes a bunch of letters to his new daughter & also sends her stuff over the years for her to read when she grows up & I feel this blog is the same thing. He’s one lucky little boy to have you in his life.
oh, and have a great birthday too, mama & I cant wait to see pics up at OI camp!
By: michelle on May 24, 2011
at 9:20 am
Happy 1st Birthday Sean!!
My son shares a birthday with Sean so it’s been a full year here but no where near what you’ve had to go through! My thoughts are with you guys always!!
By: Jennifer on May 25, 2011
at 10:54 am