Traveling

We left our house on Saturday afternoon, June 19 and headed to Medford, OR to stay overnight with Greg's parents. This was the start of our 17-day vacation. We got there in the evening and had a late dinner with them before getting the kids to bed.

As I mentioned in my previous post, Greg spent Sunday (Father's Day) golfing with his Dad and trying to change a tire. The golfing part was fun, but the tire part, not so much! That added some unnecessary stress to our day and we had a long drive to Portland that evening.

We got to Portland Sunday night and checked into our hotel. We were very happy they gave us a free upgrade on our room. We ended up with quite a large room which gave us lots of room for all our stuff as well as Greg's bike with room to spare.

Our large hotel room in Portland made it nice to spread our stuff out


We spent two nights in Portland. Greg had to work there on Monday and Tuesday. Since my sister lives there, I was able to have lunch with her on Monday, along with my niece, her friend, and my boys. The kids were so tired due to the long hours in the car and not enough sleep at night and poor Caden fell asleep in the highchair at the restaurant. It was adorable and sad all at the same time!

Caden asleep at The Old Spaghetti Factory in Clackamas


On Tuesday morning, the plan was for me to drive by myself with the boys to Spokane and Coeur d'Alene while Greg stayed in Portland and worked that day. He was flying into Spokane that night. I was really dreading that part of the trip for me. The kids were exhausted and tired of being in the car for such long hours and I knew it would be 6 hours of whining and crying which wasn't exactly appealing to me.

Greg had a brilliant idea though! Fly my niece, Melissa, from Spokane to Portland and have her drive back with me. We had a free ticket that was going to expire at the end of that week anyway. Melissa is 13 years old and has traveled around the world with her family so she's comfortable on an airplane, although this was her first solo flight and she was a little nervous about that. But she did wonderfully traveling on her own.

So Tuesday morning, I dropped Greg off for work and then I headed to the airport to pick up Melissa. Her flight landed at 8:45 am. As soon as I picked her up, we hit the road driving back to Spokane. Having her in the car with me made the whole trip so much less stressful! She is great with kids and helped entertain Kyler. She was able to stay in the car with Caden while I took Kyler for potty breaks, etc. And when we stopped for lunch, she could help with the kids while I ordered food, etc. I was so incredibly grateful for her help! I don't think she realizes how much help she really was.

Me and my beautiful niece, Melissa!


My brother-in-law graciously picked Greg up at the airport Tuesday night and drove him over to my parent's house so I didn't have to keep the boys up so late and pick him up myself. Then the next few days were primarily spent in preparation for Greg's Ironman Triathlon in Coeur d'Alene on Sunday, June 27.

After arriving in Coeur d'Alene, we have spent lots of time with family and friends. Some of our closest friends from the Sacramento area drove all the way up to Cd'A to support Greg and cheer him on. We also have some friends who live in Spokane who used to live near us and attend church with us. So all of us got together for lunch on Friday in order to catch up. In addition, we had some good friends from Boise drive up and stay with us from Thursday night until Sunday. We are so blessed to have such incredible friends willing to drive long distances to see us and especially support Greg in the Ironman.

L-R: Ryan, Suzanne & Ellie Standish from Sacramento, Greg & Carey, and Scott & Heidi Maloney from Spokane

Our friends from Boise: Jubilee, Sharla, Randy & Piper Jamison


Saturday Greg had to drop off his bags of items for his transitions from swim to bike, and bike to run, etc. And, he had to drop off his bike. There was probably over 1 million dollars worth of bikes there and they had tight security to watch them overnight to ensure nothing happened to them. We spent lots of time with family and friends on Saturday afternoon as well. Then it was early to bed as we all had to get up at 4 am to get ready for the Ironman.

Sunday was a crazy day but that requires it's own post. We all survived, Greg in particular, and were happy when Monday rolled around. This week we have spent relaxing a bit more and tomorrow we leave to drive to Seattle to get ready for Greg's sister's wedding on Sunday, July 4. This is supposed to be our vacation, but it sure has been busy!

Father's Day and Tires

I know I'm a little behind, but we've had a lot going on in the last couple weeks. We spent Father's Day in Medford, OR with Greg's parents and Greg spent the morning golfing with his Dad. Before they went to the golf course however, they discovered a nail in the back left tire of our Trailblazer. They thought it would be best if they put the spare tire on for our drive to Portland that afternoon. After all, it seemed like a better idea to change the tire in the garage at their house than get stranded on the side of the road and have to do it there.

When they returned from golfing, Greg and his Dad set to work to change the tire. Unfortunately the spare tire would not come off. Both Greg and his Dad have changed tires before but they could just not make this work! That spare tire refused to come down. So, we were left with the option of leaving it and driving to Portland with the nail in the tire. Not the most fun way to spend Father's Day for sure!

We needed to replace the tires when we returned from our trip anyway, so we just had to do it a little sooner. When we got to Portland, I took the car in to Les Schwab where they fitted it with 4 brand new tires. It wasn't exactly a fun place to spend all morning with two children. (Greg was working all day so he couldn't do it.) But it was definitely what we needed to do. And now we could complete our trip with peace of mind.

I am so blessed to have such an incredible husband and father to our boys! He works so hard to support our family and enable me to stay home and care for our children. Happy Father's Day Greg! I love you!

I'll add more details about our trip in the next entry.

Greg and his Dad attempting to get the stubborn spare tire off without success

My lucky boys with their awesome Daddy

Our attempt at a family picture. The kiddos didn't want to cooperate.

Greg looking at his Father's Day gift, a custom made personalized calendar I do every year

At Les Schwab in Portland waiting for our Trailblazer to get new shoes

Almost ready to go. Now we should be safe for the rest of our trip

Swallow Study

I got a phone call from Sutter Memorial Hospital on June 11. They wanted to schedule Caden for a barium swallow study. We have been on the waiting list to have this done for 6 months! Then when they called, they were ready to schedule it for Thursday, June 17. I was shocked they were scheduling it for less than a week from the time they called me.

I really wasn't sure if it was going to be worth it or not but scheduled it anyway. Caden is not exactly eating anything by mouth. When I work with him, I can't get him to accept any tastes in his mouth even. However when our feeding therapist is here once/week, she is usually able to get him to tolerate several tastes. I say “tolerate” because he isn't exactly excited about it. He doesn't open his mouth. For him to tolerate it means that he's not shaking his head side to side rapidly and he's not blocking the spoon with his hands or shoving it away.

I called our feeding therapist and talked to her about it. She ended up calling the speech and language pathologist (SLP) who does the swallow studies to get her thoughts. The conclusion was that we give it a try and see what happens. My only fear was that we would traumatize him more by doing it and wasn't really sure it would even end up showing us anything useful.

For those who don't know, a barium swallow study is done in radiology. The barium is a dye they can see with x-ray as they watch what happens to liquids as they are swallowed. Is it going down the esophagus like it's supposed to? Or is it being aspirated into the lungs? Things like that.

Thursday morning did NOT start off well. We had to wait longer than I would have liked... then when the SLP did take us back into the room, there was no place for Caden to sit and he didn't want to be held. He was really agitated and fussy. And I had to answer multiple questions, sign some paperwork, etc. The SLP didn't seem to be in any sort of hurry and I was trying to let her know the longer we waited the less chance there was of accomplishing anything useful.

Finally we were able to start. When I first placed him in the seat and put the lead apron over him, he just started screaming. I can't blame him, he was in a strange place with strange people and doing strange things. Usually those things do not bode well for him and he knows it. :( So I held him for a little while longer while the SLP mixed up the baby applesauce with the barium and while we waited for the radiologist. As soon as the radiologist arrived, I placed him back in the seat and he started crying again. But there must have been something calming about the radiologist, who was a small Asian guy, because Caden settled down and watched all of us warily.

As soon as the equipment was in place, they started recording the scan. I was STUNNED when Caden actually allowed me to put a small taste of food in his mouth. Again, I must clarify. This means he just sat there. He didn't open his mouth willingly, but he didn't turn his head away or try to push me away with his hands. So I was able to push in quite a few tastes of the applesauce/barium mixture and then we switched to just barium which is more of a thin liquid.

The study showed the following: Caden is not currently aspirating. None of the swallows he took were aspirated. GREAT news! On the second bite, the liquid penetrated the voice box. I guess it's pretty common for the first two or three bites to go where they are not supposed to. After all, the kids are usually upset or crying or something. So the SLP wasn't really concerned about that. Keep in mind though that Caden does have a cleft in his right vocal cord which is damage from the ventilator tube. This means he has a hole when his vocal cords come together which isn't great.

But they did note he had a delayed swallow. This means he is holding food/liquids in the back of his throat before swallowing. This puts him at risk of micro aspiration because as he holds it there, it can leak through the cleft in the cord and go down the trachea into the lungs. This is kind of a bummer. But my perspective is that he has a weak swallow because he hasn't had the chance to practice it much. I think as he takes more food and is swallowing more, the swallow will get stronger and faster and therefore it will become less of an issue.

I told the SLP that we are supposed to be starting intensive feeding therapy this fall with Dr. Patel/Clinic 4 Kidz. She asked me what my goal was with that program. I honestly couldn't believe she asked me the question, but I responded by saying our goal is to get Caden completely off the feeding tube. Obviously! Why else would I be doing it??? Anyway, she wanted to make sure that I shared a copy of her report with Dr. Patel and also with our pulmonologist to make sure everyone was on the same page and had accurate information.

I am trying to keep in mind that this SLP doesn't really know Caden. She doesn't know his history, she doesn't know his personality, etc. So even though she was acting very cautious about advancing with oral feeds, I am not quite as hesitant. I talked to our regular feeding therapist after the study and she was in complete agreement with me. She said there didn't appear to be anything neurologically that would be preventing Caden from having a stronger swallow. She thinks it will just take practice and repetition. She didn't see any reason for us to not continue moving forward.

I also talked to our former nurse case manager through our insurance and she said that just because he has a delayed swallow doesn't mean he can't eat by mouth. She said it just means that you have to give him more time between bites. So, with all that being said, the SLP wants us to repeat the barium swallow study in 6 months to see how he's doing then. Hopefully we will have started Dr. Patel's program by then and made some progress with eating orally.

So, that's the latest. Caden is not aspirating but he has a delayed swallow which puts him at risk for micro aspiration. I would appreciate prayers that he will progress quickly and do well with eating by mouth.

Lake Tahoe

I'm sure many of you remember my recent post about our cardiologist wanting us to attempt a weekend at Lake Tahoe with Caden to see how he handled the elevation. Well, actually he wanted to do a heart cath first and we said we would rather not. So this was the next option.

So, last Friday, we packed up the car and the kids and we drove up the mountain. I took a baseline O2 reading on Caden before we left the house so I had something to compare it to. His sats were 98-100. Then we started driving. When we hit 4000 feet, I took another reading. Caden was 94/95. I decided I would do the rest of us so I could compare everyone. Greg was 98, I was 92/93, and Kyler was 97/98. Not bad.

I took another reading at 5000 feet on Caden. He was 95. Greg was 98, I was 87, and Kyler was 95. (Are you seeing a trend that I have the lowest oxygen saturations in the family???)

Then as we went over the summits at elevations over 7000 feet, I took another reading on Caden. His sats were now in the upper-80's. I didn't love that, but figured we would be dropping down 1000 feet so I would get another reading once we got to the lake basin. When we got to the hotel, I took another reading and Caden was stable at 94%. I was quite happy with that. Basically as long as he is over 93% the docs are happy. When I checked my own sats though, they were still in the mid-80's. Go figure! I had no idea my sats fluctuated that much with elevation. We've never had a pulse-ox to use on any prior trips to altitude so I had no way of knowing that.

Of course it does make me wonder if there is an underlying problem. In fact, I have recently been considering getting an echo because I want to make sure my heart is working properly. I think Greg should get an echo as well. After all, we have two children with congenital heart defects and it is possible one or both of us have an undiagnosed CHD.

And, I have a friend through our heart support group who just found out she had an undiagnosed CHD. She is 28 years old. Her daughter, who turns 3 this month, has hypoplastic left heart syndrome and has undergone two open heart surgeries with the third one scheduled for July. But the mom never had any idea she had a CHD until April this year at which point they scheduled her for surgery on May 4. It's amazing how fast your life can change. I figure it can't hurt me and Greg to have echos to rule it out for ourselves. After all, we need to know if we have a problem because we need to be here to take care of our children.

Anyway, I took another saturation reading on Caden and myself before bed on Friday night. His sats were 93 and mine were 96. His were borderline based on where his docs want him, so I put him on oxygen overnight. After I took the oxygen off this morning, he was at 93 again. His breathing sounded good and there was no wheezing so that was good.

We had breakfast and then we all went down to the beach. We are staying right on the state line between California and Nevada. It is a “private” beach but the hotel we stayed at gave us a beach pass so we could access it. We spent a couple hours down there Saturday morning with the boys. Then I took Caden back to the room to feed him and put him down for a nap. His sats before his nap were fluctuating between 91-93 so I put the oxygen on him for his nap.

Greg and Kyler went to the swimming pool and stayed there for a couple hours. The weather was gorgeous and the sun was hot! Kyler was having a ball playing in the water, especially the hot tub, even though it was so hot. I spent the early afternoon in the hotel room with Caden while he napped.

After Caden got up from his nap, we ate and then we went on an evening walk around the casino area and through Heavenly Village. It was still pretty hot though.

Saturday night before putting Caden to bed, I checked his sats again and they were 94. We decided to leave him off oxygen and monitor his sats overnight. We figured that was kind of the point of the trip. I got up at midnight and checked him again and he was at 97! I was so excited! Then when he got up in the morning on Sunday his saturations were 96. That was so good to see. He did so well handling the elevation.

Sunday morning, we had breakfast and packed up the car. Then we headed to the recreation area to let Kyler burn off some energy before we got in the car to drive home. He and Greg had fun playing tag and hide & seek in and around the trees. So cute!

I would say it was a really good weekend trip. It was so nice to have relaxing family time together without anything on the agenda. And, since Caden did so well, we were all able to enjoy ourselves. We played on the beach, climbed rocks, swam in the pool and walked around. Overall fun. Great way to recharge our batteries.

Now I need to report to Dr. Van Gundy to let him know how the weekend went and see what he says. Will he clear Caden for air travel? What will he suggest next? Who knows? But, at least our trial run to elevation was a success!

Here are a few pics of our weekend. :)

Last Day of Preschool

Thursday was a bittersweet day for us. It marked the end of Kyler's first year of preschool. He changed so much this year it's amazing. I can't believe how fast the year flew by! Kyler absolutely loves his school and has made some good friends there. He was so sad when I told him it was his last day. He kept saying, “how come?” Of course that is his response to just about anything these days. But he truly was sad that he doesn't have school for the summer. Thankfully he will be back again in the fall for the “4's” class.

As a thank you for the teachers, Kyler and I baked some pumpkin bread for each of them. Hopefully it is something they will enjoy.

Here are some pictures of Kyler with his teachers. Miss Shellee, Miss Nicole, Miss Sharon & Miss Sherry are the teachers and Miss Diane is the director of the program. They work so well together and we are so blessed to have Kyler in a place where he has done so well.

Miss Shellee

Miss Nicole

Miss Sharon (L) and Miss Sherry (R)

Miss Diane