Saturday, November 29, 2008


Before the Thanksgiving moment is totally past, I wanted to share my feelings about gratitude and memories of last Thanksgiving. I think it is obvious that we have a lot to be grateful for. But to name a few things. we are grateful for how well Brandon and Katelyn are doing. We can't count all the bullets we have dodged. For Derek and Blake who are amazing little boys who have exceeded any possible expectations during the last almost year and a half. Being great big brothers comes naturally to them and I have honestly never heard a word of jealousy from either of them. We are so grateful for good friends and family who mean so much to us.

This year we enjoyed Thanksgiving dinner at our home with my mom and the Sinema family. We had a great dinner and then went to see Bolt and then back home to enjoy pies and ice cream. It was a great day.

Last year Thanksgiving was another of those really, really low points for our family. And one that I think needs to be acknowldged. There is something about reflecting on the past that I think is so important. It teaches us so much to reflect on where we've been.

On Thanksgiving day we were preparing to have a nice dinner with our family. We were preparing the meal and were so excited to have Katelyn home and we were preparing for Brandon's transfer to Utah Valley. While dinner was finishing up we were upstairs doing something and then we came downstairs to finish up with dinner. We put Katelyn in her swing and walked across the room when we heard her choking. We quickly discovered that the nasal canula that deliverd the oxygen she needed was filled with water. Blake had been playing around and turned the humidifier on the oxygen upsidedown. When we came down the water started flowing down the tubing. This resulted in a frantic 911 call while Brent tried to get her breathing (she was basically drowning in all the water) and a visit from the paramedics and later a trip to the emergency room at Primary Children's which left Brent and the boys sleeping in the van waiting to find out what to do. Thanksgiving dinner was ruined and the day was horrifying.

Looking back on the whole thing, I still see everything unfolding through the viewpoint of someone else. I couldn't believe it was happening to me. What a difference a year makes. We can't say that enough at our house. More than anything else, I am grateful for my family and how happy our life is now. While it may not be normal by anyone else's standards, it is our normal and we love it.

Friday, November 21, 2008


I wanted to share the some of the recent firsts in our family.

Katelyn wore shoes last Sunday. We have looked and looked for shoes that would fit either of them with no luck. Both she and Brandon's feet are not only small, but Katelyn espeically has very narrow feet. Not the typical fat baby feet. So anyway, a lot of effort and thought has gone into trying to find something that would work. On Sunday I put some thick tights on her and then happened to think of some shoes that Wendy gave to us and they were just narrow enough for her to keep on her feet, but after all of that effort - she hated them! She wouldn't even stand up in them. She wouldn't let her feet touch the ground in them. Today we tried again, and she loved them, but they really are just so big she couldn't keep them on. But she liked them a lot more and really liked her dad's shoes too.

Brandon is cruising. Okay, so this doesn't mean that he can stand and cruise independently, but he can side step and mostly support himself at our ottoman. I am just elated that he is doing some reciprocal movement with his legs. It is very encouraging. He is also sitting pretty consistently. He has been on and off for the last couple of months - frustrating! But he seems to like it now.

Blake and Derek are making the adjustment of being in separate kindergarten classes just fine. They like it and they both seem to be thriving in every way. The social aspect is tricky when it comes to playing with friends, etc. Blake has gotten a couple of invites that have been for just him, because they are in his class. Until Friday it has always worked out so that they have both been able to go and play. But on Friday Blake went to go play at his friend Will's house and Derek had his friend Rilee over to our house to play. I know it sounds silly, but it is the first time thier social calendars have parted. And It was a bit weird for me, but not for them. The funny thing is that for all of the planning and discussing that went in to making this a happy thing for everyone (and trust me there was a lot of that!) Blake's friend's mom emailed me Friday morning and said that Derek was welcome to come. That is totally what he would have preferred to do, but I think he still had a fun afternoon.

Katelyn took her first steps this week. She has been standing and wallking with toys for a while, but we've decided she is just too chicken to let go and walk. So I started working with her to get her to let go and come to me and she is doing it! She is so afraid. She loves to push things around thought, here is her recent favorite push toy (this also happens to be Brandon's favorite toy to play with). On her hardwood floors she practically runs with this thing. I got out of breath trying to capture her doing this. (yes, i am THAT out of shape!)

And yes, those are her bloomers on her head. We are looking for a cute hat for her for Christmas. She loves to wear things on her head!

Brandon's lungs seem to be healing and making progress. By summer he was only needing oxygen while he was sleeping. While we continued to use the pulsed oxymeter to monitor his oxygen saturations we started to see an unusual trend by early Fall. Some nights he would need oxygen and some nights he wouldn't. Finally one night Brent said he'd had some trouble with the probe that goes on his foot to measure the oxygen saturation. I changed it later that night and he hasn't needed oxygen since, so it was really just a bad probe I think. So sent the big oxygen tank back and just kept a little one for security through the winter months with respiratory season and all. This is the first time in 13 months we haven't had a big tank on the stairs.

This has left a permanent mark on the carpet on the landing of our stairs- a good reminder of where we have been will help us be grateful for where we are.

And last of all a family first for us. We have Christmas lights on the house and they are all up already. I am so excited! I wish we had more, but maybe next year. For now I am happy that the bottom roof line is lit and maybe next year Brent can figure out getting the top level, but I love Christmas lights and have always wanted to have a fun lit house at Christmas. Maybe I will post pics later.

Thursday, November 13, 2008

Too Many Doctor's Visits

This blog has become more of a family blog than a blog about Brandon and Katelyn. We are considering starting a separate family blog. However, the way we work, it will take a long time for us to get around to it so in the mean time we will keep sticking everything here.

I miss our old camera. These photos just aren’t as good.

It’s been a busy week. Amy and the kids made several trips to the doctor. Everyone has been sick. Brandon and Katelyn have been sick and we are treating them as if they had C-diff (although we didn’t have them tested again). Derek had a really bad fever and Blake had a bad ear infection. We are still working hard to avoid getting sick but we can’t seem to avoid it completely. It makes me nervous about what might happen this winter.

To try and keep babies from getting RSV and having to be hospitalized a medication called Synagist can be administered. However, they only give it to babies or kids that are at high risk and qualify for it. We found out that both Brandon and Katelyn qualify. It wasn’t surprising that Brandon qualified because he’s only been off of oxygen for a short time but it was good news that Katelyn qualified. The bad news is how much these shots cost. The bigger the dose the more it costs. As they grow the dose needs to be increased and the shots get more expensive. They will need a shot every month during RSV season. Most likely 4-5 months. The dose that they will need this month will cost.....

…$3K a piece for a total of 6K. That’s right, $6K this month. It gets even trickier because there are a bunch of ways to get these shots. They will even come to our house. However, each method has different insurance coverage so Amy’s spent a lot of time on the phone trying to figure out the best method.

The other day the insurance guy came in to give everyone the lecture about signing up for next year. The topic of the lifetime family maximum came up. He said that it’s $2million but assured us that no one ever reaches that max. The insurance company can't easily give us our total -when we ask they just tell us to add up everything on the paperwork they’ve sent us. They must not understand that this is literally several reams of paper. We keep thinking we have to be misunderstanding the total, because our best guess is that we have crossed the $2 million mark. Health care costs are just so amazing and it is funny how confident the insurance guy was that no one ever reaches the max.
These where taken in our backyard the other day:

Here are some photos from Halloween that I should get up before Christmas: