Christmas Eve

After a bit of thought re: the last post; I decided to remove it. I am sure some of my "venting" came from the disappointment of our Christmas this year. We had planned to go to my parent's for Christmas and had to stay home as some of my extended family were fighting illness. We felt it was too risky to expose Ryan so we stayed home. Anyway, here are some pictures from our Christmas Eve celebration at our home! ;) I lined the kids up for some pictures before we opened gifts and even got in a family photo or two. I also got a couple cute shots of my younger sister, Kami and her son, Elliott. :)

Almost here!

Can hardly believe Christmas is only days away. Seems like this year flew by faster than any other!! The kids are home from school for the next couple of weeks. I love having them home. The most obvious reason that comes to mind would be because of my fear of one of them getting sick. But, also just because it's fun to have them here! We usually fill the time during Christmas vacation with lots of baking, painting, art projects, Christmas music (turned up really loud!), playing in the snow, play-doh, video games and Christmas movies! I am incredibly thankful that Ryan is well this Christmas and able to enjoy it without having to be suctioned, coughed or percussed every few minutes; as he has in years past. My heart goes out to those that aren't feeling well or to those who have lost children. Unfortunately, when you live with a disease such as SMA; you get to know many families who have experienced great loss. Some have even lost more than one child. My heart breaks for them.

Pray for Ryan

I posted this on Ryan's blog. But, thought I'd post it here as well. Please keep my boy in your prayers. Some days with this disease are harder than others. Today is one of those days and it's not even 9:00 am yet! He woke up this morning around 7:00 and wanted his shower, as usual. Its been a few years since I was able to shower him as he's gotten so big. Steve is pretty strong and he has felt confident that we didn't need to modify our bathroom for Ryan as he could still shower him very easily. To shower Ryan, we lower him into the bathtub onto a chair that sits inside the tub and then he is able to spray himself with a detachable shower nozzle. It's not the best setup. But, it has worked since we moved here when Ryan was 5 years old. Maybe the time has finally come where we need to do something different. Today when Steve was lifting Ryan up out of the tub, he somehow hurt Ryan's back. Keep in mind, that sometimes just grazing a foot the wrong way can cause extreme pain for Ryan. Even the act of putting on his socks or shoes can cause him extreme pain. It has just become our "new normal". He experiences pain on a daily basis. Some days it's worse than others. It's never easy to see your child hurt and feel so incredibly helpless in easing his pain. Showering and getting dressed aren't things he can do without, obviously!! So, often times, causing him some pain is something we can't really avoid. The bigger he is getting, the more pain he seems to experience. I can't say it enough times at how much I'm looking forward to heaven. My boy will be whole and free of pain and disease.

Josh is thankful for 3 things!

We had a family Bible study tonight. And afterwards, Steve went around the room asking each of us to name off 3 things we were thankful for. He began with Joshie. So, Josh started off by his first thing he was thankful for. He said, "Jesus". So, Steve asked him what else he was thankful for and he said "God". Finally, Steve asked what was his third thing and very seriously he said, "Caillou". Of course, Jesus, God and Caillou!! What else would this 3 yr old be thankful for, right?? LOL

Christmas program

Jorie had her school's Christmas program last night. It was very cute! Lots of familiar songs like "The 12 Day's of Christmas" with a christian twist to it..... and even the song "I want a Hippopatamus for Christmas!" Don't think I've ever heard a choir sing that one before. But, it was pretty cute. What made it even more fun was afterwards walking out to our car in a winter wonderland of snow! It's beginning to feel alot like Christmas!!

Tree

Just a few more pictures of the decorated tree and a cute little 3 year old in front of it. ;0)

Getting ready for Christmas!

Poor Jorie has been sick for the past several days and yesterday I took her in to the ped's office. Sure enough, she tested positive for strep! We haven't dealt much with strep. I am pretty certain I have never had it. And this is the first time for Jorie. We are so thankful that, so far, noone else has caught it. She's feeling much better now with 3 doses of her antibiotic!

We finally put our tree up over the weekend. A little later than usual this year as I wanted to try something different. We have been using the same artificial tree since we got married and I thought we should either get a REAL tree this year or possibly a new artificial tree. We finally decided on this tree and we are loving it! It's so nice to have something different! I think this year will be extra special for Josh. He is so excited about Christmas and the decorations! I love this age!

Singing kids

Just posted a video of Jorie and Josh singing in the bathtub. I had to record from a distance where they couldn't see me or they might stop and it was just so cute!!! You will want to pause the playlist to the right so you can hear them singing. Pretty cute.

Jorie and Josh singing!

Make an on-line slideshow at www.OneTrueMedia.com

Update on Ryan

Update on Ryan. The cold that started out very mild, ended up with a few complications. Ryan has vasovagal attacks every so often. Probably at least once or twice a year. They usually last about 30 to 40 minutes, followed by a high fever for a few hours. And during the actual attack, he quivers uncontrollably and his heart rate plummets. It's scary for all of us, including Ryan. The first time he had one of these attacks, we were so worried we actually called 911! Now, we really know what is going on and the signs to look for. However, this past week, Ryan had two of these attacks and the first one lasted for 4 hours! That means that his heart rate was also affected for that amount of time. And just to play it safe, we had an EKG done on Ryan the day after the attack just to be sure his heart was okay. The results were okay. But, it's never an easy thing to see him go through that. Thankfully, he has been feeling so much better the past few days. And even felt good enough to have his good friend over to hang out with him. These two boys are so good together and probably about a foot difference in heigth! Ryan is somewhere around 5 ft. and James stands at about 6 ft. or more!! I was hoping James would stand for the picture so you could see just how tall this boy is! Put it this way, I ordered their usual favorite meal, pizza! And a large pizza was gone in a matter of minutes. I think Ryan had maybe 2 pieces! LOL ;0) Hope everyone has a wonderful Thanksgiving! I've been working on preparing food all day today in hopes that I can relax tomorrow!

Sugar Cookies

Jorie and Josh had a blast making sugar cookies the other night. Aside from a little help from me, they did most of the work themselves! They were so proud!

Rough week for Ryan

Kind of a rough week for Ryan this week. He has been home from school on and off all week due to a mild cold. Mild enough not to turn into a dangerous situation for him. But, just bad enough that he wasn't feeling up to going to school until after lunch each day this week. Mornings are usually hard for him with any illness. He has been struggling with pain in his right foot from his broken leg back in July. From having to hold his leg and foot still for so long; it really caused his foot to be EXTRA tender and sensitive. This makes transfers, the removal of clothing and putting on socks/shoes extremely painful for him. As Ryan gets older and the disease progresses; we are seeing him lose more and more abilities. And lately, it seems he has quite a bit of pain as well. Mostly pain during transfers. We have to treat him like a raw egg most of the time so as not to injure him. This morning, I was in the other room and Ryan and Josh were in the den together looking at the computer. Within minutes of my leaving the room, I heard yells coming from Ryan. Apparently, Josh had pulled Ryan's right arm down and away from his body. Not fully understanding just how weak and fragile his older brother is; this really hurt Ryan. He was in tears for about 15 minutes afterwards. For a while there I was afraid we might have another serious injury. From examining his arm and shoulder area, it doesn't look too bad at this point. We are hoping that it will heal quickly! Transfers are already such a scary experience for him and we don't need another injury! In the meantime, I am trying to explain to Joshua just how fragile big brother really is. It doesn't take much to hurt him. We are hoping for an illness and injury free week next week and are looking forward to Thanksgiving and family!

SanFrancisco

Steve and I were able to get away to visit Sanfrancisco a few weeks ago. We had an amazing time!!! It rained almost the entire time we were there. But, there were a few breaks in the weather for us to visit Golden Gate Bridge and Stinson Beach. Steve proposed to be at Stinson Beach 10 years ago and we had never been back since the day he proposed. It was fun visiting again and finding the exact spot where he asked me to be his wife. He even got down on one knee for me again. :) We enjoyed our time away and came home refreshed!

Halloween

We had a great Halloween. We had Grandma and Grandpa over to help us carve pumpkins on Saturday. My dad is much better at pumpkin carving than I am and he helped carve Ryan's pumpkin for him. Jorie wanted a kitty cat pumpkin and Ryan and Josh had faces in theirs! Halloween afternoon we had Ryan's friend, James over to hang out with him. Sort of a tradition to have James over and the two play video games and talk about school and sports. I usually order them their favorite, pizza!! I am thankful that we have James as this used to be a sad holiday for Ryan. Never could participate much in Halloween activities. Jorie and Josh trick or treated up and down our street and got plenty of candy! Jorie was a kitty, of course to match her pumpkin! And Josh was Tweedle Di from the movie Alice in Wonderland! We ended our evening getting together with good friends!! Hope everyone enjoyed their Halloween!

Happy Birthday Jorie!!

Eight years ago today, we welcomed a beautiful baby girl into our family. Jorie Leanne Berhar was born on October 18th, 2002! She was a perfect 7 pounds 7 ounces. We have been blessed with this little girl in so many ways. Wow! Eight years! Hard to believe! Happy Birthday Jorie! We love you!!

Pictures, pictures, pictures!!! ;0)

I haven't been very good at posting lately. But, here is a post worth posting!!! I LOVE photography. Always have. But, love getting my kid's pictures taken professionally and I don't do it nearly as often as I used to. When Ryan was a baby, I took him in every 2 to 3 months on the dot! In fact, when he was really young, I think I took him in even more often than that. However, after Jorie and Joshua came along, those trips to the photographer grew less and less. And I figured I could take just as good of pictures with my own camera anyway. But, I don't have a studio or the perfect lighting nor do I always have Steve and my mom with me to help make the kids smile and cooperate! I was happy with how these turned out. What do you think?