November 2011


November 24, 2011 - Happy Thanksgiving!  We hope everyone has a wonderful holiday!  We are thankful for our home, our family and friends, our jobs, our kids, and that we're all getting over our sinus infections.

I have been slacking at taking pictures and getting the website updated for the last two months.  Time is flying.  We've all had colds that turned into sinus infections in the last couple weeks.  We're all on medication and getting better.  Ryan had another round of Botox in October where they put him under anesthesia and it worked well again.  We have started to seriously consider doing the intrathecal baclofen.  This is where they insert a pump in his chest between the fat and muscle, run a tube over the shoulder and down to the middle of his spine where they insert it.  The pump then gives him a small dose of baclofen each day for a period of 3 to 6 months before you have to have the pump filled again.  While it does suck to have to insert a device, it will be much nicer for him to have constant results with the baclofen instead of the bell shaped curve results with the Botox.  We had been against doing it because we thought the neurosurgeon wouldn't allow it but once we realized that the pump does not go into the abdomen so should not cause us any issues with shunts or shunt infections we're more interested.  I think after the holidays we'll be having more discussions with our orthopedist and neurosurgeon about doing this.  Other than this not much else is new with Ryan.  He's doing well in school and therapy. 

Megan continues to develop and grow by leaps and bounds.  She is amazing us with the stuff she is picking up.  She is a talking machine and you can see the wheels spinning as she tries to figure things out.  Lately she is obsessed with clasping the straps on the high chairs.  She is doing really well with shapes, colors, objects.  She loves doing flashcards and singing.  It is so cute when she wakes up in the morning and over the monitor we hear her singing her ABCs.  She is now 18 months and at her checkup weighed 24 lbs 14 oz (75th percentile) and her height was 32.5" (70th percentile).  Our pediatrician and daycare tell us she is advanced for her age.  We're working on self feeding and she is doing great.  She loves food - especially fruit. 

Both kids were really cute on Halloween.  Ryan was a good sport even though he did not care.  Megan didn't get it at first but enjoyed getting dressed up.  After we took her to the first house she got it and loved it.  We only did the great grandparents and 4 or 5 of our neighbors and she was so upset when we made her stop.  Then once people started coming to our door she was ok with that.  If no one would knock on the door for a while she would say 'Knock' and go up to the door and knock on it and want to open it to see who was outside.  It was really cute.

Scott celebrated another birthday the 30th of October.  We went out to dinner with family on Friday night, Saturday he smoked a turkey on the BBQ using our molasses based turkey recipe and then on his actual birthday he got to go dig a hole at his sister's.  Not too exciting.  We'll celebrate more in June when we go to the final round of the PGA's US Open tournament in San Francisco.  We're both looking forward to it.

Now we're busy getting ready for the holidays.  Scott has been working on lights.  He's almost going Griswoldy this year on our house.  Megan already loves the Christmas lights that we are seeing so he's going a bit overboard this year - excited for her to enjoy it.  It is going to be a fun Christmas.  Just worried about what she is going to do with the tree and decorations. 

I have mentioned in previous posts about my friend at work with a rare cancer that had a cord blood transplant.  After being in Seattle since May he finally got to come home the beginning of October.  He's been back to work part time and was doing well.  Unfortunately he just found out that one of the cancers is back.  His team of doctors is working to figure out a plan but it is not looking good in the long term.  They are only giving him a 10-15% chance of making it 5 years.  While you do not know him, he could sure use all the prayers he can get.