September 2010

September 19, 2010 -  Again it has taken me about a month to get this website updated.  The time is flying!  We finally got everyone healthy in time for us to go the Washington DC.  Ryan's feedings were a struggle until around the 26th or 27th of August and then he became a ravenous boy.  We had nights where we had to get up with him at 2 in the morning because he woke up hungry.  It was a very nice change from where we had been.  In the end he lost about 2 lbs. while he was sick.  You could see his ribs and shoulders - it wasn't good.  He dropped down to 18 month size shorts and he's still pretty much wearing those now (and he's gained almost a pound back).  These days he is not as ravenous but we're back to our normal for feedings.  Scott & I had been worried.  Last week Ryan and Megan started getting junky noses again and Tuesday night Ryan was running a low fever and acting like he didn't feel well.  No throwing up but we kept him home Wednesday just to make sure it didn't get any worse.  He appeared to be feeling better by late Wednesday afternoon. 

Preschool has been going well for Ryan.  He dives out of Scott's arms when the therapists come out to get the kids.  They say he is doing what they ask of him and that he's been doing good.  He's started to really like the therapy dogs and apparently this last week fed them.  We love that he likes going to preschool.  He's had his caretaker in the afternoons and that is still going good.  Friday mornings he has his developmental therapist and they appear to have a lot of fun together.  He was also doing swimming lessons and decided to take September off to make sure we got him back on track with everything before we start them up again.  We'll start them back up in a couple weeks.  He's a busy boy during the week.

On the 27th we took him to see a different orthopedist.  We wanted to see what he had to say in treating Ryan's spasticity.  We've been doing the Botox but our old physical therapist mentioned going to this guy and checking into intrathecal baclofen.  Intrathecal baclofen is where they surgically implant a pump in Ryan's abdomen and this dispenses low doses of baclofen directly to the spinal cord for quickest results.  This then helps relax the muscles and helps with mobility. This new orthopedist came from Wake Forest and has a lot of experience with cerebral palsy kids.  He didn't think at this point the intrathecal baclofen was the way to go and he didn't think continuous botox was the right thing either.  He suggested we have Ryan wear his AFOs all night so he gets a good 10-12 hours of wearing in one setting and then have him wear them to preschool as well so we get about 14-16 hours of wear a day.  Easily done.  He also suggested a SWASH brace.  This stands for sitting walking and standing hip (SWASH).  What this is is a brace that goes around Ryan's waist and then goes down and attaches to his thighs.  This will help stabilize his trunk with a tripod base for sitting, prevent scissoring of the abductors, and helps with hip alignment.  We went and got Ryan fitted for one and now just waiting for all the authorizations with our private insurance and Medicaid before we get to pick it up.  Really looking forward to what this can do for him.  Then we'll do Botox as we feel it is needed versus just doing it as this can lead to muscle deterioration.  Our goal is to not have to have surgery to release & lengthen the muscles that are short due to the CP.  Once we get the SWASH brace we'll post pictures.

Megan is doing good at daycare.  Apparently her and one of the other little girls sit in their bouncy seats and chat.  It sounds like they are pretty cute.  At her 4 month check up she weighed in at 14 lbs 5 oz (70th percentile still) and 24 inches for length (35-40th percentile).  Our pediatrician was very happy with her development.  She continues to develop at what appears to be lightning speed from what we're used to.  She is almost rolling all the way over.  She is so close.  She loves being in the exersaucer and jumerroo.  We tried her on cereal last week and she did better than we thought.  We'll continue to work on cereal and then hopefully get moving on 1st level foods.  She is a smiley girl with big eyes and quite the Chatty Cathy.  She has started laughing in the last couple weeks and that is so cute.  And then she has her mothers impatience.  She'll be perfectly fine one minute and screaming bloody murder the next.  I had a golf tournament Friday afternoon with dinner after.  When Scott called me she was screaming in the background.  He couldn't put her down or she would lose it. 

On September 1st my mom and sister Colleen came to Boise to watch the kids so we could go to the BSU game in DC.  They came a couple days early so the kids could get used to them and they could see what we do.  Then early on the 3rd Scott, myself and his parents boarded a plane for DC via Denver.  In Denver we had plane problems (hydraulic issues) so we had to wait for another plane so we were a couple hours late getting into DC.  We did one of the packages through a travel agency in Boise so we had transfers from the airport to the hotel, to the game plus Metro passes.  We didn't do much that first night but go to dinner, check in on the kids and relax.  Saturday the 4th we did the White House tour at 8:30.  It was pretty interesting to see and think of how many presidents had lived there, the people that had been through those halls and how small it really was.  After that tour we had a tour of the Capital.  It was busy in the Capital and we didn't get to see as much as I thought we would but it was still very interesting.  We then went over to the Library of Congress - beautiful building - and then we walked by the Supreme Court before heading back to the hotel.  We headed out to Crystal City, VA where one of the bars out there was suppose to be BSU's home away from home.  There were quite of few blue & orange folks showing up.  We ran into our neighbors that live kitty corner from us and I ran into friends I haven't seen in 8-10 years that now live in Denver.  Sunday Scott & I took the Metro to Arlington Cemetery.  We walked around and saw all the Kennedy graves and Tomb of the Unknown Soldier and the changing of the guard.  They said they are averaging 32 funerals a day 6 days a week.  Amazing.  After that we met up with Chuck for lunch at Five Guys by the White House.  Then Scott & I walked around the back of the White House and cut across to the Washington Monument where we met up with his parents.  We then walked to the World War II Memorial, the Korean Memorial, the Lincoln Memorial and the Vietnam Memorial.  While we were at the Lincoln Memorial we were sitting on the steps taking a break when we saw one Marine One go in front of the Washington Monument towards the White House, then a second one went by but those then veered off in different directions and then a third one came by and started slowing down as it landed at the White House with the president and first family as they returned from Camp David.  Whether you agree with Obama as the president or not, it was still a neat thing to see the president come in.  If you don't know they fly 3 of the helicopters so you don't know which one is carrying the president.  Later that night we went up to Union Station and then took a night tour of the monuments.  That was really neat.  Monday we did 2 Smithsonian museums - Air & Space Museum and Museum of Natural History.  Then we rested before we left for the game. 

Got out to Fedex Field and the bus driver took us to the wrong place so we had a walk about a mile to the stadium.  There were tons of Virigina Tech fans tailgating and man were most of them rude.  Majority of their fans were horrible.  Our seats were pretty good - on the 15 yard line on the BSU side by the end zone that said Broncos 9 rows up.  We had some Virginia Tech fans sitting behind us that were actually nice and we had some good conversation with them.  The game kicked off and BSU started off great and we were enjoying it.  And then of course Virginia Tech comes right back.  We stood the whole game (minus timeouts and commercials).  With about 5 minutes left in the game I just sat down.  We were done in my mind.  Scott was dreading walking back to the bus and having to hear it from the Virginia Tech fans.  Then we came back and won.  Man what a game!  The walk back to the bus was much nicer.  The Tech fans hardly said anything to us - got a couple I hate you's - and all the BSU fans we saw didn't throw it in their face - we were well behaved.

Tuesday we didn't leave until 2-2:30 for the airport so we had time to kill so Scott & I wandered over to the Bureau of Engraving & Printing.  We got there just in time for a tour and got to see them printing the new $100 bills that come out in February.  Very different looking bills than what we currently have.  It was an interesting process.  Then we picked up Scott's dad and went to the National Archives and saw the Declaration of Independence, Constitution and Bill of Rights.  The nice thing with the day after Labor Day is we got right in to everything - no lines - it was great.  Then we checked out of the hotel and headed to the airport and got home about midnight. 

Wednesday Mom & Colleen got up with the kids so we could sleep until 6:30-7.  When I came out and Ryan saw me he was so happy to see me.  Giving me hugs and just being so sweet.  I definitely loved it.  We got the kids off to preschool and daycare - everyone was asking us about the game - and then we got Mom & Colleen on the road.  They had a good time with the kids and it sounds like the kids were good for the most part.  Ryan ate for Colleen better than he's eaten for any of us - even chunks like he never had a problem.  Amazing.  We definitely can't thank my mom and Colleen enough for taking care of the kids and letting us have some time away.  We definitely enjoyed it, needed it, missed the kids and were ready to come home to them.  We averaged 6.5 miles of walking every day (man our feet were sore) and took the Metro everywhere we could.  DC was actually very clean and pretty (which we weren't expecting).  Everything we saw was so amazing.  It was unbelievable to think of all the history that has taken place there.  We hope to take the kids back there in about 10 years when they can appreciate it and are hopefully learning about it.

Last night we had Scott's family over to watch the BSU vs. Wyoming game.  Scott setup a TV outside and it was a nice day that we all sat out there, had dinner and watched the game.  It was a lot of fun and BSU killed Wyoming.  Next week is against Oregon St.  ESPN's College Gameday is coming and the game will be nationally televised on ABC.  Very big!  We're hoping to drop the kids off at the great grandparents and go down to see some of Gameday in person for at least a little bit and then we'll head back down later in the day to tailgate and go to the game.  We're planning on taking the kids.  May be a mistake but we got to try it at least once.  May be the only other game I get to go to this year if they don't do well.