Ben has had WAY too many doctor's appointments since last week and I've learned that we just can't do so many so close together in the future. Not only is it too emotionally difficult for Ben to go through so many different tests/exams/etc., it's too emotionally difficult for me.
I'm stressed for him and on edge because he keeps on getting so upset, which in turns causes him to try and pull out his trach (yes, the joys of the trach). Then when I'm given the results from the doc, the news seems to take a bigger tole on me (if it isn't good news, which it hasn't been). I think I can only handle one or two negative results a month and those results CAN'T be communicated on back to back days or in the same day. So I'm now trying to do a juggling act of what appointments to schedule and what ones to put off for a little longer. And trying to avoid as many hospital visits as possible during the cold/flu season. It is just so hard when you have 18 different specialists wanting to see him so often!
Today's first appointment was with Opthamology and Ben's vision has gone from no nearsightedness to pretty significant nearsightedness in one year. We also got a bone density Xray. Haven't heard those results yet.
Ben is still scheduled for Urology surgery on August 13. I'm dreading it and the date seems to be creeping up on me. Our original surgeon has gotten really ill and we now have someone else doing the procedure. We met with him yesterday and he gave us a detailed case by case scenario of what could happen based on what he sees (this surgery is to bring down his testicles which are more than likely in his stomach). I didn't realize that this procedure might have to be a two-step surgery based on how things look. I have full faith in the new surgeon and I'm praying for a straight forward one-step surgery. Please keep Ben in your prayers on the 13th.
We are also looking for a new day nurse to go to school with Ben on Monday and Tuesday morning. School is only 3 weeks away and we don't have any candidates yet. I just need to take a deep breath and regroup!
On a positive note, Ben will be turning 4 this Sunday!! I can't believe it was already 4 years ago that we started this journey with Ben. Ben enjoys opening gifts so I'm looking forward to watching him tear some paper. I also ordered him a Handy Manny cake and he will get some tastes of that (I hope he tries a lot of cake because I ordered a pretty big one for just Mike, Ben and I). The one gift I can't give him that he needs the most though is to stay healthy before his surgery!
8 comments:
Oh, my goodness, Ben and Viv have the same birthday! Happy Birthday, Sweet Ben! Have so much fun opening your gifts and enjoying your cake!
Amy, I will definitely be keeping Ben in my prayers on the 13th, and you, too, as you wade through all these appointments. I learned the same lesson about myself - I just can't handle lots of Viv's appointments back to back; it is too emotionally taxing on my mamaheart. Thinking of you guys!
Yes, I remember all too well the "Josh Calendar" all his doctors appointments, therapists, etc. It is a lot, and it seems to never end. I'm sure Ben is a trooper, but it still is taxing on you. You deserve a break! I hope his surgery goes well...nothing like the added stress of switching doctors, ugh! I hope that it is all done in one surgery. I will keep you all in my prayers. On a much, much happier note... Happy Birthday Ben! Enjoy your yummy cake!
Amy, I am so sorry we didn't get a chance to meet in person at the conference. I saw you once across the room on Friday, and couldn't find you again after that. Well I guess we will just have to wait until 2011 - hope to meet Ben then too!
I just wanted to say that Luke had 3 surgeries to bring his testicles down (each 6-7 months apart), and while that is not ideal, they really weren't bad surgeries. The first was probably the easiest, one day, only the 3 keyhole incisions. The second was combined with getting a g-tube and was awful, but I later discovered it was the g-tube part that was awful. And the third was also one day with the added "tack-down" incision. Both the first and third, he was back to himself in a day or two. Probably the most difficult thing was no straddling for a month after each surgery. I know this might effect Ben with his pony walker. If you want to know anything more about our experience with this send me an email or FB message.
Hope you get good news with the bone density screening. One thing I came away from the conference was that I need to get Luke's vision checked again. I am sorry that Ben's had such a drastic change.
I will be thinking about Ben on the 13th and praying that things go well.
Happy Birthday on Sunday, Ben! Hard to believe you are 4 already!
I hope the appointments slow down for you guys and that Ben's surgery goes well. Will he have to get glasses? Hopefully, he'll take to wearing them a little more quickly than Katie did! :-)
We'll be thinking about you guys on the 13th.
Oh, Amy. I am so sorry that this marathon of appointments and results has taken a toll on you and on Ben.
I can all too easily remember when Gracie was Ben's age and how incredibly difficult appointments could be. We always had to have two adults present... one to take care of her, the other to attempt to communicate with the doctor. Luckily, she has calmed a bit and they can even include (dare I say) a bit of fun sometimes! (Like her signing every song she's ever been taught while waiting for the cardiologist the other day!)
Add in the stress of trying to calm your anxious child, your own frazzled nerves and a bevy of appointments and not-so-good results and you have a formula (and a divine right) for a mama meltdown. I wish I could reach through the computer and give you a big hug! I am hugging you in my heart and mind, though. And, like you, I always try to "bunch up" the crazy number of appointments around school and the cold/flu season... it's easier in theory, but can wreak havoc in other ways.
Good luck with the nurse situation... I can only offer my greatest empathy there. I so get it.
You will, of course, be in our thoughts (all of you) on the 13th... but FIRST AND FOREMOST on the 9th when you celebrate Ben turning the Big "4!" Woo Hoo! Can't wait to see frosting pics!
i echo everyone's elses comments of love and comfort...you are in our thoughts.
i clearly remember "meeting" you on the phone years ago when our lil' ones were just born and we thought it was so funny that we had the same names, both enjoyed scrapbooking, our boys were similar in age and both were dealing with choanal atresia. we've come a long way baby...but boy do we have an adventure ahead of us,don't we?
happy birthday big ben...you are one amazing kiddo!
love, amy and max
Happy Birthday Ben!!!
Sorry you all have to go through so much at one time, I know sometimes I like them close together just to get them all done and then have a bunch of time off.
Good luck with everything and I will be praying for Ben durning surgery.
HAPPY BIRTHDAY BEN!!!! Hope you have a wonderful day! Have mommy check the mail in the next day or 2 for something I made you.
Kim
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