February 2013

February 10, 2013 - As usual I can't keep up with this blog as often as I'd like.  Work and life in general have just been busy.  Time is flying by and we're almost half way through February and I haven't even updated how Thanksgiving and Christmas were!

Need to start off with both kids having surgery on Nov. 19th.  Ryan was having a simple procedure to remove his ear tubes.  Megan was having her tonsils out.  Surgery was to be at 2 but an emergency came up for the surgeon so surgery didn't start until 5 or 5:30.  Megan went first and then Ryan.  Both kids did great during pre-op and Grandma Pam showed up which helped.  Both surgeries went great but Dr. Beck did say that Megan's tonsils were nasty.  Ryan woke up from surgery nice and quiet and did so well.  Megan was her normal devil child self.  At first the PACU staff was trying to get her to calm down and to a point where they would bring us in (we were in the room next door with Ryan) but finally they just said bring in the mom and I went in and she settled right now.  Megan ended up staying the night in the hospital and really she did great in her recovery in the hospital.  She was eating popsicles and tried mac n cheese and was drinking.  The only thing she didn't like was the hospital bed because it had that auto vibration thing to help stop bed sores and it scared the crap out of her so I had to keep the bed unplugged which meant no TV (remote tied into the bed) and no nurse call button.  She did really went other than that and when the doctor did rounds at 7 a.m. she was so pleased we got discharged right away.  Ryan got to go home with Scott so we just had to wait until he got Ryan off to preschool and came get us before we could leave.  We were on our way home by 10 a.m. I think.  The next few days went well.  We hosted Thanksgiving and you would have never known Megan had just had her tonsils out.  She did fantastic and we had a nice time.  The next morning though was a totally different story.  From the time she woke up until about the time she went to bed she was crying and just didn't have a good day.  That continued for the next week or so until the scabs came off.  I worked from home while she was recovering and I tell you I was so excited to get back into the office when she was recovered!  All in all she did as good as anyone could expect and Scott & I are both very glad that we have tonsils done on both kids. 

We have started going down the path of getting Ryan a wheelchair.  We had a meeting in December with Norco and Ryan's physical therapist.  I left there a little overwhelmed.  I never knew there were so many options in a wheelchair.  We have definitely relied on his therapists and the Norco guy to help us since they know this much better.  We just had a final meeting this past week and have all the pieces/parts determined.  Now Norco and the PT are finishing up the letters and paperwork that are required to be able to submit to Medicaid and our insurance for pre-authorization.  They are hoping to have all that done this next week.  I'm hoping we'll have the wheelchair in the next couple months.  Until then we have a loaner that we're trying out and so far we've liked having it.  The canes are a little short - especially for Scott - but Ryan sits so much better in it.  We had him go to behavioral therapy and kindergarten in it and they said he did really good in it and liked having it. 

We have also been talking about getting a new car.  We had decided we could get me one more car of what I wanted before we went down the path of getting a minivan or something to handle the wheelchair.  We almost bought an Acadia but fate stepped in the way and the one I wanted was not on the lot.  The car dealer was to let us know when it was back but they never did.  Once we started these wheelchair talks we realized we need to get a minivan to help me especially get Ryan into the car.  I never ever wanted to be a minivan mom and hate that I have one but got to do it for Ryan.  We had planned to get one that had this mobility seat that comes out and lowers to the ground to assist with getting the disabled person in.  The dealer didn't know anything about this model of Toyota Sienna but eventually tracked them down.  Unfortunately they only had colors that I did not want.  So while they were doing more digging we took a pretty maroon one for a drive.  We loved it.  Came back and said we'd just take that one.  Already it has made loading Ryan much easier having the wider doors and doors that slide back.  It has all the bells and whistles on it so while I hate that I have a minivan (or multipurpose vehicle as we're calling it) at least it is really really nice and rides much better than my Tribeca.  Luckily with the Sienna  we can modify it to add this seat I mentioned earlier or ramps for the wheelchair. 

The Boise State football season finished up with a trip to the Las Vegas Bowl.  Scott, his friend and his parents were going to go.  It was 3 days before Christmas so they decided to drive from Boise to Ely on Friday, get up early on Saturday and drive in to Vegas, go to the game and drive back to Ely after the game.  Then they would drive back to Boise Sunday morning.  Then we'd all go to the contata that evening.  Everything was all lined up until Scott woke up that Friday morning sicker than a dog.  We thought it was the flu.  He was so sick he just couldn't make it so luckily his friend was able to take someone else and they went along with Scott's parent while Scott was in bed.  He went to the doctor and found out he had strep throat.  I had also been not feeling great - Friday afternoon I ended up running a fever and just felt horrible for a few hours and then my fever broke but my throat hurt pretty good.  Megan was also not feeling great (and had just had pink eye along with her brother) so on Christmas Eve her and I went to the doctor and they treated us for strep even though they didn't strep test us.  We didn't get to go to the contata either.  Sick for Christmas - just what we needed as we were hosting again but this time not as many people. 

We ended up having a great Christmas even with the sickness.  My mom came down and Scott's family came over.  We stayed in our pjs most of the day and then finally cleaned up for dinner.  The kids had a good time.  Megan loved all the gifts.  Santa brought Megan a Cinderella vanity and brought Ryan a wood sled.  They were totally spoiled by our families.  Megan still talks about Christmas and Santa and all her gifts still. 

We both were off work until after New Years so we spent the time getting everyone healthy, getting the inside Christmas decor down and just relaxing a little bit.  It was very much needed but with how crazy work is now, I wish I would have worked a few days.   

We've been working on getting Ryan on the right medication for his seizures.  We started with Keppra with 4 mls two times a day.  It hasn't seemed to do much.  We saw the neurologist a couple weeks ago and now we're doing 8 mls two times a day.  We think the seizures are worse.  We plan on calling the neurologist this week.

We went up to McCall the last weekend of January for the McCall Winter Carnival.  We had a really nice time and enjoyed the parade, a few ice sculptures, the snowbike races, and lobster feed.  On Sunday we took everyone to do the sleigh ride to feed the elks.  I had done this about 10 years ago and it was a lot of fun.  I was a bit worried how the kids would do but both did great.  It's on a family farm outside of Donnelly where they take you by sleigh back into their land where about 90 elk winter.  There were two bucks - a spike and a 6 point.  They put the sleigh right in the middle of the herd and after they have a few minutes they come up and start eating the hay bales that we're sitting on.  At one point one elk started sniffing Megan and got within a couple inches of her face.  I thought she'd freak but she did great!

 It looks like we're going to have to fix our master bath.  Our whole master bath is done in Italian travertine - shower, floor, counter.  Horrible tile to use for a master bath because it is a natural stone so hard to clean and it has veins that are starting to deteriorate and it is so cold too.  We had someone come in last year to re-grout our shower and we had a bunch of water that took about a week to dry out.  We were cleaning the shower a couple weeks ago and Scott noticed a loose tile.  He pulled it out and noticed it was attached directly to sheet rock - didn't look like any sort of concrete board or green board was used.  The sheet rock is moldy and ruined.  Even the tile that came out was uneven.  We want to get rid of the travertine, the corner tub and turn our shower into a walk in shower anyway so we decided instead of fixing the travertine (which will be spendy in itself because it is travertine) let's redo it like we want since we don't plan on moving anytime soon.  We've got a remodeling contractor lined up and will start the design process in the next week or two.  We've got the insurance adjuster coming out tomorrow to take a look to see if insurance will cover any of it.  Not looking forward to having to use the other bathroom for a few weeks when construction finally starts but we have to get this fixed soon than later.  We just hope it isn't too bad when they rip out the tile but we expect they will have to go down to the 2x4s and start over.  I hate having to spend all the money to do this since we hadn't planned on it but we're both kind of excited for the new bathroom. 

Ryan's caretaker has been working on getting him to read his kindergarten flash cards.  So far if you show him go, up, mom, dad, you, me - he does pretty good.  He can even get the words for 1 to 10.  We're very proud of him.  They have been getting him in the 4 point crawl position and he can stay there for minutes.  If you tell him to get up on his knees he'll get up on them and then push up into a 4 point crawl.  His caretaker even gets him to try to crawl into his brown chair.  It's been amazing.  At preschool they have been working on him learning how to wheel himself in a wheelchair and he can do it but it's slow.  He loves walking up our stairs so we're trying to use that as a reward for being good and not showing bad behaviors.  He loves being upstairs and he'll crawl over to the stairs from the bonus room and yell and squeal and have a good time.  Lately though he'll turn around and start backing up and will get down one or two stairs on his own.  While this is great - now we have to watch him extra careful when we're upstairs.  Him and I still have some issues - he gives me all sorts of behaviors.  I have had two situations lately where I have taken him somewhere by myself and he has thrown his behaviors - hitting, biting, spitting, head butting me in public.  I've been very embarassed both times and hate it.  We start our family education portion of the behavioral therapy we have him in.  I'm hopeful that they have some good information for us.  And to top off all the good off, we got a letter from insurance over Christmas break saying they were no longer going to pay for his therapies - again.  I tried not to think about it over our vacation.  I need to fight it but right now I'm so busy I just don't have any time.  So for now I'll let Medicaid pay for it until I can find time to dedicate to fighting them again.  They gave us the reasoning that he is no longer making progress and don't think he will make any further progress reasoning.  Seriously?  Can't you see in the reports all this progress he is making?  We've made more progress in the 10 months since his baclofen pump than the years prior.  You want to give up on him now?  I better stop before I get angry again!

Megan continues to do great.  There are 3 videos posted from her recent dance class where we were allowed to attend.  So very cute!  Her recital will be in May and I look forward to it.  She amazes us every day with the stuff she knows and the stuff she says.  After she got recovered from the tonsils I decided to get serious about potty training.  I started sending her to daycare in underwear and after having an accident a day for the first few days she has been a rock star.  I don't put her in pulls up at nap time but I still put her in pull ups for night time even though 99% of the mornings she is dry.  We've got her in a toddler bed and she's doing great in that as well.  I think we're getting ready to redo her room - take down the wall paper, paint, get rid of the changing table and get her a big girl bed.  She's already excited for her birthday.  Most days she tells me things she would like added to her wish list.  It's pretty funny.  She's still big into her Disney princesses and their movies along with Jessie from Toy Story.   

Scott & I are doing well.  Work is crazy busy for me as we are in the testing phase of our software implementation project.  I'm trying to stay on top of work and home and finding it to be a bit of a struggle.  Scott is helping me more which helps.