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Cystoscopy Today and Pictures from Deb
By Margot | October 2, 2009
Sam is having a cystoscopy today. You can learn about the procedure here: http://www.urologychannel.com/diagnostictests/cystoscopy.shtmlÂ
It’s my fault we are doing it today because Neil and the urologist wanted to do it last week when we were inpatient and I didn’t want to put Sam through it thinking things would clear up but unfortunately they haven’t. He’s still bleeding and having a lot of clots.  I feel terrible because if we’d have fixed it last week, he could have had the whole week of school. Argh.  The urologist told Neil yesterday she thinks she can see a spot on the ultrasound that may be causing the clots so maybe she can go in and cauterize it.  He is missing his field trip to the air show today and he missed school yesterday. He said to me, “I just wanted one week of school. One week. Plus I told Tanner I’d be there all week.”  I feel terrible. I didn’t think last week that there was any assurance that the cytoscopy would help but if she thinks she sees the spot then it probably will.  He had a great week at school. It is a lesson in the simple things. Sam is happy just to go to school and do normal kid stuff.  We unhooked him from his home hydration to go to school and then hooked him back up after school. I sent him to school with a huge water jug to finish before the end of the day which he did but it didn’t seem to help much.   Some days it looked better and then it would get worse. The upside is that he was and still is feeling fine. No pain, did all his normal stuff (except soccer which he was bummed about). He caught up quite a bit in school and now he’ll be out for two more weeks as he and Neil leave for Philly on Monday. Mrs. O’Donavan got everything ready and we have a big folder of stuff to keep him up to date -which we can start on as soon as I finish this update.   She also sent a huge book of MadLibs. Thanks, Mrs. O’Donavan. Sam’s friend Parker came to visit him yesterday after school and made his day. They played air hockey and ping pong and guitar hero in the playroom.  Neil spent the afternoon after work playing chess with him and Andy and Charlie came up last night with me and we all read a Zack Files Vampire book.   Joe might come up to see him tonight. He’s been pretty upbeat for most of two days. He and I stayed up last night after Neil took the boys home and played chess and talked. He was so sweet when Neil left he said, “Thanks for playing chess with me today, Dad.”  He is NPO this today. The procedure is at 2:40 so we woke up at 6am so he could eat something. He said as he was eating. “Thanks for waking me up Mom.”  He made me laugh because he said, “For some reason the only things I like that don’t make me throw up from that cafeteria are the biscuits and the bacon.” That was his breakfast today.   He’s going to be David Beckham Halloween.
Andy and Charlie are doing well. Andy had soccer practice yesterday and he ran himself ragged. His coach is going to be out of town on Saturday so Neil is going to coach his game.  He is everywhere the ball is, all over the field.  A mom came up to me at school and said her little girl whispered to her the other day, “Mom, I’m going to say hi to my friend, and pointed at Andy and then she got too shy and said there were too many people around.” I asked Andy who she was in his class and he said, “How do you know her?’ I said, “Oh her Mom said she wanted to say “hi” to you the other day.”  He sighed and said, “Looks like I’m going to have the same problem as last year with girls.” It was funny. He wants to be some wierd Yu Gi Oh guy for Halloween. Sam is going to try and talk him out of it though as he and I looked at costumes online last night and Sam thought the costume was too strange looking.
Charlie missed preschool again yesterday -he missed last Thursday too. Instead he came with me and Sam to the hospital. Sam likes having him around and since he won’t go to preschool without me….  I tried to read him some books and sing songs with him while he was here before Elizabeth came so that he got some preschool-like experience.   He cheers Sam up a lot. He cracks me up because he’ll tell me when I’m putting him in the car somewhere, “Mom, me and Sam like to do this.” and then he’ll make some crazy face or slap his behind and laugh really hard.   He did have a good day at preschool on Tuesday, he sang and finger painted and he and I actually saw a butterfly pop out of it’s cocoon which was a pretty neat moment to catch. Anyway, I was thinking he might be ok with me leaving him there eventually but since we missed yesterday not sure how Tuesday will go. He is going to be a PowerRanger for Halloween. They are his new obsession. He picked out PowerRanger undies when we were potty training and then Elizabeth got out all of the boys PowerRanger stuff to encourage him and now, we all get to watch all those fine PowerRanger movies for another year. Yeeks.  He sings the SPD song really well.
So, I’ve made you wait for Deb’s pictures but here are some of the ones she sent us early. It’s so tough to pick.   I know this is stating the obvious but she is so gifted at capturing people. Thank you Thank you. Deb. Also, we did take some Mom/Dad picks with Andy too. Those aren’t back yet. Charlie wasn’t cooperating by that time so we’ll have to get those next time.
Please think good thoughts for Sam’s procedure today and that we stop this darned bleeding. Â
Margot
Topics: Progress Reports | 12 Comments »
October 2nd, 2009 at 4:26 pm
I just turned on the computer and found out about your wonderful Friday today. Praying the the doc will find that spot and get it. Dearest Sam, he just trusts you so much to get him well, and all he wants to do it go to school and be a regular sports guy. He is truly a very special boy!
The pictures are beautiful. Deb is an awesome photographer. She got the boys – and Mom and Dad- the way they really are. Pix are really magnificent. So true to each one’s spirit. Just tell Andy that the tide will turn, and someday,he will be chasing the girls. Charlie is so sweet. Tell Sam to give him some of that want to go to school stuff.
Love and prayers,
Grandma Joan
October 2nd, 2009 at 7:17 pm
margs- no second guessing on the cytoscopy..that decision was made in context of getting your boy home from hell and only now does it look like the wrong one. It was right then and will always be.
I like the picture of the three boys with Sam behind Charlie and Andy next to Charlie. I like most of all the arms draping around Charlie and the clasp of Sam’s hands and Andy’s hand.
Brothers.
My most favorite picture is of Neil holding up Sam and gazing at him. Smiling. Only Neil knows all the millions of thoughts and fears that are captured in that photograph-I see in Sam’s eyes how much he trusts Neil and his yearning for just being a boy.
Annie Leibowitz has got nothing on Deb…
I send my love .
October 2nd, 2009 at 8:11 pm
great pictures….The boys look like they had a ball..I’m sure the water helped. Sending prayers for a successful procedure for Sam today and for his scans next week to all that we have been praying for!!
Thinking of you all
Lisa Riniolo
October 2nd, 2009 at 9:17 pm
Incredible photos! Quite a talent. Margot, I can’t imagine you doing anything that did not have your kids’ best interest first and foremost. One time I put off getting a spinal mri for Paige because I thought she strained her back playing soccer. Not. Hope the procedure does the trick. I may be in Phila the end of the week. so yell if I can help. Safe travels.
October 2nd, 2009 at 9:41 pm
Beautiful, stunning photographs of one of the
cutest clans I know !!!
You are right, Margot, they are ALL so great, hard to choose…
but that one of the three of you, interconnected, with Sam such a startling resemblence of both you and Neil… smiling, enjoying the moment!
Love them all !
5:30pm here, so I’m thinking you are getting ready for the procedure…
prayers and much love, today and every day !
Colleen
October 3rd, 2009 at 1:13 am
oh magnificent photos…what treasures….
Praying so hard for Sam…
and looking forward to seeing you Margot AND SAM in Philly!!!!
October 3rd, 2009 at 2:11 pm
Hope cytoscopy gave you some hope to stop the bleeding. We have Max’s camelback with Sam’s name on it if you want it to help him stay hydrated away from home. Those pictures are awesome. All the boys are getting so big! Close-up of Sam’s freckles amazing! And Charlie’s getting so big. And Andy’s always good for laughs! Safe travels to Philly and hoping for continued good response to the MIBG.
October 4th, 2009 at 2:05 am
Nice Photos, thanks for sharing. Good luck and I hope the procedure works for Sam.
October 4th, 2009 at 2:07 am
What a beautiful family!
October 4th, 2009 at 1:15 pm
Hi Gang,
Great pics, thanks for sharing… worth the wait!
Hope the cytoscopy really helped! Try not to fee too bad about the school stuff. We know you are doing your best making all these decisions on the fly!
Good luck in Philly – I have already forgotten the plan, is this for another round of MIBG therapy???
Lara
October 4th, 2009 at 11:34 pm
Margot, What a BEAUTIFUL family you have. The boys look soo big! Sending lots of love and prayers to Sam in Philly.
October 6th, 2009 at 9:00 am
OMG, what beautiful pictures! I love them! Glad the cysto is behind you and I hope things go well in Philly. God Bless, Love, Ellen
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