Bode's appointment

 Last Monday after our fun Easter at home, we packed up the car and headed over the pass to Seattle for Bode's CT scan and appt. with the surgeon. We made it in time to grab a quick bite in the hospital cafeteria and meet up with Nana and Auntie Deni who played with Gav and Teag so we could focus on Bode.

 

We headed down to radiology and Bode had fun playing the 'Endless Alphabet' app on my phone (its pretty awesome) while we waited. Radiology told us that the scan would be quick, but that most kids Bode's age are sedated for it. I wanted no part of that and asked ahead of time if we could just go for it and see. Thankfully, the tech was super nice and amazing and Bode didn't seem too scared as we walked back there. Trent and I got to be right there with him in the room and I laid Bode in a little cradle lined with warm sheets on the CT scan bed. The tech gently wrapped him up and secured his arms while pointing out all the cool stickers on the dome of the machine. Bode was nervous when the machine turned on and kept saying,"Um, guys?" But he didn't move or cry! The scan took 20 seconds or so and then we were done! I was so proud of him for being brave and so happy to have him skip the sedation!

 

We headed back upstairs to Cranio/facial for our follow-up with the surgeon and ended up waiting for over an hour in our little room. Here is what the guys did to pass the time- you can tell Bode is thrilled to have another pic taken, ha.

 

 When the surgeon came to talked to us, he showed us a few images from Bode's scan. In the one below, you can see the indentation where the cyst has affected his skull. (the small dent above the ear area) Dr. G didn't seem surprised since Bode has had the cyst for most of his life, but he does want to remove it so that the cyst doesn't continue to grow inward and cause more damage to the skull. He explained that the procedure is 'simple' in the cranio/facial world and shouldn't take more than an hour.



Surgery is scheduled for this coming Friday, and Bode is 1st case right now. We're headed back to Seattle on Thursday with Nana along for the ride to help with Gav and Teag. If all goes well, Bode should have a few removable stitches and his skull indentation should repair itself over the next few years. The cyst will be sent to pathology but Dr. G is confident that it is nothing to worry about long term. Bode shouldn't need further treatment once surgery is done! The thought of our sweet little man in surgery is killing me, but I'm trying to stay positive! We're praying for smooth sailing and a quick recovery.

 

These guys got spoiled by Nana and Auntie while we were at the hospital with Bode. They went for ice cream and picked out a book and a Lego project at the toy store!

After we left the hospital, we went out to an early dinner at the Ram and headed back to our hotel. We are trying to avoid germs as much as possible, so we rented a redbox and planned a movie night! We checked in around 6 and the kids jumped on the beds and danced to kidz bop for at least an hour before winding down. We had a great time just playing with them and being goofy!

Our hotel window looked out at the space needle (in the distance) and lots of city traffic. The kids took a break from jumping long enough to enjoy the sunset and watch the action. I love these guys so much!

This week we're catching up on some homeschool lessons, playing outside and trying to stay healthy before leaving on Thursday.

With so much going on in our lives and so much that I've missed writing about this last year, I decided it was finally time to update the blog! I figured I'd just start with today and add in some recent birthday posts and other things soon!

 

Celebrating Easter today at home with our little family was so great! Spring is finally officially here and the weather was beautiful! We are supposed to be quarantining ourselves for some upcoming surgeries the kids are having (more on this later) so church was out, and we enjoyed a quiet morning reading the story of the resurrection with the kids, eating candy with breakfast and riding bikes in the garage. 



 I wanted to make a big lunch to celebrate the day and Gav helped me in the kitchen chopping the potatoes and setting the table. He turned 7 in the fall and is quickly becoming quite the little man. He loves to cook and is always up for a project! We are still homeschooling and using a co-op 2 days a week. He's almost finished with 1st grade and doing great! His favorite things are math, science and history- but he's also quite the artist and is always making a craft in our schoolroom. We pulled lunch together around 1 and had Auntie Loren over to join us for our feast!

After lunch, we headed outside for an egg hunt and to enjoy the warm sunny weather! The kids love looking for eggs, and eating the candy even more. Teagan had candy or gum in her mouth for most of the afternoon and was thrilled. She turned 5 last week (will post on her bday soon!) and is a little ray of sunshine! She is really into 'tricking' us lately with a funny joke or telling us something that's not true and then quickly saying,"I'm just kiddin!" Today she had a funny smile on her face and handed a tootsie roll to Trent urging him to open it and eat it. He took it and put it in his pocket, but she insisted that he eat it right then. He obliged and when he unwrapped it, it wasn't a tootsie roll inside but a piece of her chewed gum. When she saw that he opened it, she laughed so hard and ran away, ha! Trent likes to tease the kids with gum wrappers, or other empty candy wrappers that he's refolded to make it look like its a new piece. She's quickly catching on to the trickery...

Bode loved the egg hunt too! He would open each egg he found and get distracted wanting to eat the candy right away while the other kids ran all over. He had a birthday last week also and is now a big boy 3 year old! He always has some funny question or face he's making- and we're always laughing at what comes out of his mouth. Today he fell in the dirt while running and he jumped right up and said,"that was wicked!" (I have no idea where he heard this?) He is our little firecracker and always wants to play 'fight' or 'tackle you'.

Checking out their stash...

 After our egg hunt, we went inside to color eggs and make cookies while Trent worked on a project. When we were done with that, we took a long family jog to try and run off some of our lunch! There's an area near our house where a new road is being built, so there is lots of room to explore and no cars yet! The kids were loving the shadows cast on the road below and were instructing Trent on what position to do. The top right pic below is a move they called 'The Goat'?! We had Teagan and Bode in the jogger, but when they saw the dirt field they wanted out. We ended up being gone for a few hours and found a fun trail along a nearby creek at the park. We threw rocks, got dirty and just spent time as a family. I love days like today! I try to soak in every second of the times like these we have and don't ever take them for granted. We have some big decisions to make in the next few months regarding Teag's plan for the future, and today was one of those days where I could just enjoy being together and not thinking about all that stuff. For that I am so grateful!

Tomorrow we head over the pass to Seattle for Bode's appointment at Seattle Childrens. He is having a CT scan on his head/left temple and also an appointment with the cranio/facial surgeon. Bode has had a small mass on his left temple since just after he was born. We had it checked out back then and were told it was nothing to worry about, but now that its still there the Dr. was more concerned. We saw the Cranio/Facial surgeon a few months ago and he thinks it is a dermoid cyst that will need surgery, but he wants a CT scan done first to make sure. So tomorrow is the scan and then we will get the results/make a plan. Bode is already scheduled for surgery on April the 12th, and the scan should show the surgeon if its only superficial or if the cyst goes deeper into his head. I am trying to keep my anxiety at bay and praying that its superficial and easily removed!

Teagan was supposed to go in for a heart catheterization surgery on Tues. (in two days), but that was postponed last week after a trip to the ER for a double ear infection and low SATS. After a few hours of O2 and some strong antibiotics, she's doing great again. But her cath has been rescheduled for May 1st and the surgeon wantes her illness free for 3-4 weeks before hand. The cath will let us know if she is a Fontan candidate or if we need to look at other alternatives... (the dreaded 'T' word) Last year in April she had a heart catheterization that showed high pressures in her right ventricle (17 I think) and also her tricuspid valve was moderately regurgitating. Those two combined do not make for a successful fontan candidate, so we've spent this last year adding and increasing meds to try and make an impact on the pressures/regurge. I pray nightly that all the medicines we give her each day are making a difference, but also know that God's perfect plan is being played out in her life each and every day! She is doing pretty well overall and her O2 levels are usually in the low 80s when resting. She asks to be carried after walking for a bit or going up stairs, her lips are frequently blue and she is easily winded- but it doesn't stop her!

I will update again with the results of Bode's scans and also the kids birthday posts soon!

Holiday re-cap!

We're falling back into our school routine now that the holidays are over and I thought I'd do a little catching up!

Back in October the kids and I volunteered at our local park for "Make a Difference Day." A new playground was built and they needed help cleaning up some of the hiking trails around the park. The kids were so excited to do this and it was fun doing some volunteer work as a family! I know we probably didn't contribute much with our little rakes, but I love the idea of getting them excited about helping others while they're young. Halloween was super fun and as always the kids wanted nothing to do with dressing up in coordinating costumes. I thought it would have been so cute to do the toy story characters or something else that goes together, but Gav and Teag had already decided what they wanted to be. We ended up with a Tiger, Strawberry Shortcake and Batman! Batman was Bode's backup costume after this awesome Lion outfit didn't work out. This is the only picture I have of him that he's not crying in. He hated that thing- especially the heavy head part! The kids and I spent Thanksgiving down in Las Vegas with my Dad, Stepmom and family. I can only find a few pictures from our trip but it was so great! We played outside in the warm weather, rode horses, ate way too much food and spent some fun time with family. On one of our last nights, we all went out to a really fun restaurant where they cook your food right in front of you. The kids were mesmerized! Here they are with my stepbrother, their 'uncle' Austin- so sweet! Homeschooling is going really well now that we have a semester under our belt. It is definitely more of a challenge than I thought, but also more rewarding than expected! We're still up in the air as to what we'll do next year (home school vs. public) but right now I'm enjoying our time together. These two are pretty good buddies most of the time, and Teag is going to miss him if he goes to public school next year! Their bedrooms are close to each other and I often find Teag snuggled up in Gav's bed listening to stories with him on his cd player at night. This little guy is quickly becoming a part of every activity too and never wants to be left out! He loves playing in Teag's room, and follows her everywhere during the day. He even calls for her at night if I don't get in there quick enough! Christmas flew by this year and again I don't have too many pictures, but lots of memories were made for sure. Teagan had her first preschool program a few weeks before and was so excited to show us her songs and bible verses. The kids had been passing around a yucky cough/cold thing the week before and Bode ended up in the ER with me the day of her performance with croup. He's the first of the kids to get it, and it was terrible (and so sad!). So I stayed home with him that night and Trent took Teag promising to video it and take pictures. Here they are before they left, I was so sad to miss it! As soon as they were back we watched the video and Teag re-enacted the whole thing for me- it was adorable! Teag is definitely not shy and it was so fun seeing her get to have her own special night!

We spent Christmas weekend with Trent's family in Twisp sledding, eating and having fun with family we hadn't seen in awhile!
On Christmas Eve we went to church and then got together with friends of the family for the 'Happy Birthday Jesus' party. Every year the kids act out the Christmas story and then we have cake! This was the second year that Gav was Joseph and Teag was an angel. Bode was a wise man but wasn't ready to sit and listen- I think he was crawling under the chairs in the back! We opened presents Christmas morning and then headed back home later in the day so Trent could get ready for work Monday morning. My mom flew in Christmas night and spent the week with us at the house! We spent alot of time playing with new Christmas toys, baking and eating yummy stuff, and just being silly. I got a new vacuum for Christmas (so, so exciting!) and I think I used it every day- it was theraputic! There's nothing better than a good vaccuum! Trent has been a skier since he could walk and decided that this was the year to bring Gav with him and teach him too. The guys went last week for what was supposed to be a half day on the bunny hill. They ended up skiing all day and even went up the big chair lift to the top! I'm glad Trent told me this after they had already done it (and survived). I love to snowboard and can't wait until we can all go as a family- but the chair lifts still freak me out! Gav loved it and is already planning their next trip!

That just about catches us up once again after not blogging for months...again... I was talking about this with Katie (Maddie's mom) the other day and realized that I have intentionally avoided blogging this last year or so partly because we're busy but mainly to sort of 'disconnect' from the heart world. Teagan's whole first two years were filled with Dr.'s appts., surgeries, feeding tubes, worry, anxiety, etc... and once every thing sort of settled down- it was nice not to have to think about it every second. Of course I still think about her heart, health and future every day and worry about whats ahead- but not every minute any more. I get on the blog and read up on how all our heart friends are doing almost daily, but for some reason just felt like posting here made it too real again. But as winter turns into spring, things are about to get real again as we are most likely facing Teag's 5th heart catheterization and 3rd open heart surgery. (the fontan completion) We have an appointment in March at Seattle Children's and should get a pretty good idea of whats ahead for this summer. Teag seems to do pretty well day to day, but its the little things that we're so used to that I'm starting to notice more and more. The constant blue lips, out of breath as she climbs our 1 flight of stairs, wanting to be carried from the parking lot to the store because she's tired, and the slight clubbing of her fingers and toes. Its so hard to admit that she's actually still pretty sick and that this huge surgery stands in between now and her feeling better. I'm trying not to dwell on it too much until March comes and we know more. For now, I'm trying to cherish all the small moments and fun things we're able to do while she's doing so well. We really have been so blessed these last 2 years with her needing such little intervention, and are looking forward to having this third surgery behind us!