"Not What We Expected!"

Hello
Just quickly want to let you know how well Mason’s appointment went today at Childrens Hospital. I am not quoting word for word, here, but pretty much the gist of what went on.
Dr. Connolly the neurologist asked if he was having any drop seizures, I said none. Then she said that most kids continue with seizures, they just change in appearance, was Mason having the staring seizures? I said, he’s having nothing all day long, only mild ones at night. She looked up from the notes she was writing and said, " that is not what we expected" ( I knew he was doing better than expected, but I really liked hearing her say it!)
We talked about the night time seizures, I asked if there was anything we could do about those. She seemed to feel that they were so mild that we should just leave it for now. In her usual cautious way, she said it’s still early (after surgery to really know long term effects). Really not mess around with medications or anything - changes might increase the seizures again. So we’ll probably wait until summer to think about going down on meds.
The neurosurgeon, Dr. Steinbok, stopped in as well, checked Mason’s head. Healing very well, took him a moment to find the scar, (hair is covering it well now in the last few weeks) Mason’s skull is hard, which is good.
Both doctors seemed mildly surprised at Mason’s progress seizure-wise and developmentally. I asked her how other children did after this surgery. Some had no changes, others big difference. I told both that this has been the best three months in the last five years.
Do you remember a few e-mails back I used the word astounded? I am still amazed at the continued miracle we see day after day. I don’t know if I want to just say, "yep, this is what God does" or "I am so amazed that God has done this!" we are so very thankful for each day that Mason can live without a helmet, not fear for his safety, enjoy new things he is doing or saying.
He is really into a "clean up" mode. The down side is that we can’t find some things anymore! We have found the TV remote control in the washing machine, dryer, laundry hamper, in his backpack, in the shoe box, entry closet, and toy box!
Asia and Sydney, in their compassionate hearts often say to me, "I wish Jesus was right here so he could heal Mason." I quickly remind them how incredibly different things are now than before the surgery. As good as things are, the girls would love to see Mason fully complete. Wouldn’t we all? So whether it is today, next year, or the moment he sees Jesus face to face, we know it will happen. J
May God continue to bless each of you for thinking of us. Love Shirley

First Dr Appointment Coming Up

Hello everyone! Well, things are still going well with Mason. No seizures during the day,although I suspect I may have seen one Saturday evening. He does haveseveral clusters of mild ones at night. Which means I am sleeping with himagain. (you can take just a moment to pity me :-) Actually, I'm not doingtoo bad, I did get a month and a half or so after surgery of sleepingthrough the night ! Several times a week I get some amazing naps in duringthe day that are life savers.) He had been crying in between each one, Ithink they really scared him, but hasn't cried often this past week. Masonwakes 2 or 3 times per night, although he is settling down better now than afew weeks ago. He has to hold my hand or lay his head on me to fall asleep.One night he kept putting my hand on his chin, I couldn't take it away untilhe was fast asleep. He tends to fall asleep much quicker if Daddy is in hisroom with him. Daddy can sit in the comfy chair and work/play on his laptopwhile Mason stays in bed. I've tried that . . . doesn't work. His separation anxiety is lessening, and in general he is getting more likehis happy old self with much less crying. Mason had an MRI last Wednesday morning, and we are going to see Dr.Connolly tomorrow afternoon (Wednesday). This will be the first time she'sseen Mason since surgery. I can't wait to tell her how amazingly well he isdoing. I did send a couple of e-mails to her via her nurse.It's been over three months now, the best in the last 5 years of seizures.We are about to implement a pic symbol system which will change the way wecommunicate with him. Currently the main form is crying and we don't knowwhat he wants most of the time. Well I should head off to bed. Busy day tomorrow. Thanks again forcontinuing to support us in your prayers. Love Shirley
Pray for
- Medication changes that may decrease his night time seizures
- Learning communication will happen quickly
- Rest for me, even though nights are constantly interrupted
- The girls won't get left behind because I'm tired