hopefully for a while!
I will be so happy if we could stay out of the children's hospital for a little while. It is sad (yet, nice in a strange way) when a parent can say that people know you and your children at the hospital. I could count 8 different staff members that came up to us today to say "Hi!" that have all dealt with Zoe or Zach at some point in the last 6 months.
Today was Zachary's Panendoscopy with biopsy(s)/brushing(s). The procedure was at 10:10 but we needed to be there by 8:10, which meant leaving the house at 7am to beat traffic. We got there with near perfect timing and everything went rather smoothly.
Zach went back without taking happy juice and went to sleep fine - thanks to the same wonderful anesthesiologists that has taken care of both of my kids. The GI came out 20 minutes later and told me Zach was fine and that everything looked normal, but he won't be able to say for sure until the biopsies are back. He also said he got "a lot" of biopsies. We are to call in one week for the results. Zach will be in some pain today and he should just take it easy, using Tylenol and warm compresses as necessary for today.
So that is it....the last test to be done....now bring on some answers!
Tuesday, June 17, 2008
Monday, June 16, 2008
First Test of the Week
Today was Zachary's Nuclear Medicine Emptying Scan.
The test went well - the Dr can call today (according to the tech) for preliminary results. For sure we should have answers no later then Thursday. The test was relatively easy and painless. Zach had to drink his rice milk with some nuclear meds in it - that took longer then we thought and I was told if he didn't hurry up we would need to put an NG tube in his nose. I made a game out of it for him as we were walking the halls at our children's hospital (thank goodness for their decorations). Zach finished in the nick of time. He had to lay on the table, strapped down for 2 hours. Every minute a camera took a picture of his stomach. Zachary was fine - quiet the whole time until the end when he had enough.
When we were done, the tech opened the door - Zach ran full force out the door waving to the tech and saying "buh-bye" over and over very fast - he was stuck, it continued until we got into the parking garage and no one was around - one last time as I put him in the car - this time it was only five times really fast.
My little man survived today, now for preparing for tomorrow.....
"BUH-BYE"
The test went well - the Dr can call today (according to the tech) for preliminary results. For sure we should have answers no later then Thursday. The test was relatively easy and painless. Zach had to drink his rice milk with some nuclear meds in it - that took longer then we thought and I was told if he didn't hurry up we would need to put an NG tube in his nose. I made a game out of it for him as we were walking the halls at our children's hospital (thank goodness for their decorations). Zach finished in the nick of time. He had to lay on the table, strapped down for 2 hours. Every minute a camera took a picture of his stomach. Zachary was fine - quiet the whole time until the end when he had enough.
When we were done, the tech opened the door - Zach ran full force out the door waving to the tech and saying "buh-bye" over and over very fast - he was stuck, it continued until we got into the parking garage and no one was around - one last time as I put him in the car - this time it was only five times really fast.
My little man survived today, now for preparing for tomorrow.....
"BUH-BYE"
Sunday, June 15, 2008
Little Miss
Just wanted to share pics of "Little Miss"
She has been dealing with all of this too and has continued to shine.
Saturday was picture day for recital and she had to be all dolled up. She begged for me to take her picture - so here she is our little dancing star!
Friday, June 13, 2008
Zach's New Trick
Zach's new trick....opening the door!
A. Notice he has to stand on his tiptoes ;-)
B. See how the door is now cracked - sorry for the runny nose, we are battling a new cold.
C. See what I can do? He was so very proud of himself
Thursday, June 12, 2008
Week 7: WOW!!!!!!!!
WOW!!! Just WOW!!!
What a change one day can make......
Zach had an amazing day (well after the test). Therapy went super good!!! I can't even put it all into words -- only WOW!!! We were at therapy for an hour and a half, right from there we had to get Zoe to dance.
ST (1/2 hour) - he was all over the place, a wild man, sounds were flying out of his mouth, for the first time ever he took a cow (puzzle piece) and walked it around the room (like the cow was walking) and he was just babbling away - WOW!!
OT (full hour) Zach was still a little wild man, he accomplished so much - the biggest thing for him was the swing (it is a fabric swing that he gets wrapped into - like he is back in the womb) for the first time EVER he wanted more, more, more (http://www.lifeprint.com/asl101/pages-signs/m/more.htm) - WOW!!
Then came dance, I've never seen Zach like this - EVER - he was extremely social, not just with the few Mom's he is comfortable with, but every single person in the waiting room (which was more then normal today) - he kept throwing a little pom-pom ball at everyone and giggling -WOW!!!
My son was AMAZING today - such a wonderful change is beginning to occur!
OH and did I mention - another word -------- "MORE", before he could sign it and kind-of, sometimes get "moe" out of his mouth but today we got a full out "more" - you have to listen really closely to him say it because the ending doesn't come out too clearly. To help you understand how he sounds - If you've ever heard a deaf person talk - that is exactly how it came out - think, Marlee Matlin. Now hopefully he will start to say it on his own, not just being a parrot. He didn't say it on his own but he was able to mimic Ms. Kristin and myself more then just his normal mimic of "moe" WOW!!!! WOW!!!! WOW!!!!
WOW ---- "Buh-Bye"
What a change one day can make......
Zach had an amazing day (well after the test). Therapy went super good!!! I can't even put it all into words -- only WOW!!! We were at therapy for an hour and a half, right from there we had to get Zoe to dance.
ST (1/2 hour) - he was all over the place, a wild man, sounds were flying out of his mouth, for the first time ever he took a cow (puzzle piece) and walked it around the room (like the cow was walking) and he was just babbling away - WOW!!
OT (full hour) Zach was still a little wild man, he accomplished so much - the biggest thing for him was the swing (it is a fabric swing that he gets wrapped into - like he is back in the womb) for the first time EVER he wanted more, more, more (http://www.lifeprint.com/asl101/pages-signs/m/more.htm) - WOW!!
Then came dance, I've never seen Zach like this - EVER - he was extremely social, not just with the few Mom's he is comfortable with, but every single person in the waiting room (which was more then normal today) - he kept throwing a little pom-pom ball at everyone and giggling -WOW!!!
My son was AMAZING today - such a wonderful change is beginning to occur!
OH and did I mention - another word -------- "MORE", before he could sign it and kind-of, sometimes get "moe" out of his mouth but today we got a full out "more" - you have to listen really closely to him say it because the ending doesn't come out too clearly. To help you understand how he sounds - If you've ever heard a deaf person talk - that is exactly how it came out - think, Marlee Matlin. Now hopefully he will start to say it on his own, not just being a parrot. He didn't say it on his own but he was able to mimic Ms. Kristin and myself more then just his normal mimic of "moe" WOW!!!! WOW!!!! WOW!!!!
WOW ---- "Buh-Bye"
Ultrasound
We are back from the hospital, Zachary had his ultrasound today at 8am.
It went really well, I've got to thank his SPD for that! I Know thanking his SPD must sound so strange to some of you - but for me, it is because he goes threw so much. Sometimes I catch myself thinking about if he wasn't able to shut down, how would he cope with all these tests? I've seen him before the SPD was so bad - he fought tests being done - that was much harder to watch. SPD, right now, during these moments is like saving grace for me. It is much easier to watch him shut down then it is for me to see him struggling, crying, and fighting the tests being done.
He laid so still, arms up, fists clenched, eyes looking down and to the side (I think he was looking at the bed). He didn't move, and not a sound came out of him. The tech commented "if only all little ones were this good!" Little did she know he was just shutting down.
My paperwork says "call in 4 days for results" Hopefully there will be some good news to blog about.
It went really well, I've got to thank his SPD for that! I Know thanking his SPD must sound so strange to some of you - but for me, it is because he goes threw so much. Sometimes I catch myself thinking about if he wasn't able to shut down, how would he cope with all these tests? I've seen him before the SPD was so bad - he fought tests being done - that was much harder to watch. SPD, right now, during these moments is like saving grace for me. It is much easier to watch him shut down then it is for me to see him struggling, crying, and fighting the tests being done.
He laid so still, arms up, fists clenched, eyes looking down and to the side (I think he was looking at the bed). He didn't move, and not a sound came out of him. The tech commented "if only all little ones were this good!" Little did she know he was just shutting down.
My paperwork says "call in 4 days for results" Hopefully there will be some good news to blog about.
Wednesday, June 11, 2008
Pictures
A. The Gang - Zoe and her friend Lisette, Daniel, and Zachary
B. Zachary - What is in your mouth?
C. Zoe and Lisette
D. Zoe and her teachers
E. Zoe's class singing their song to the parents -- 11 boys and 5 girls
F. Zoe
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