For Sale

Six and a half years ago Scott and I bought our first home in Orem. It wasn't much to look at with its blue and yellow shutters and overgrown rose bushes and ivy, but we saw the potential in it and knew it was where we wanted to be. Over the years we have poured countless hours of work into making it the home we wanted for our family. I know it wasn't anything spectacular, but it was ours. This was the home where I rocked all my babies to sleep, where my kids took their first steps, where I spent my days at home with my kids before they were off to school. This house held what were undoubtedly the best years of my life.  

But the time has come for us to move on to our next chapter.

We listed our house for sale on March 29th and by the end of the next day we had two offers that exceeded our asking price. This was such a blessing, seeing as I had no idea how I was going to keep our house show ready for weeks on end. We were thrilled to accept the offer of a darling family we know and who will love our house as much as we have.

As I stood in our empty house for the last time I couldn't hold back the tears. 

It was a great house and I will miss it.

Our family's last time at the house.

San Diego

The week after Scott's graduation we celebrated by taking off to beautiful San Diego. We have really wanted to take the kids to Legoland and Sea World and knew now was the time to do it before we moved to Nebraska and California was no longer a drivable trip for us. Thanks to my parents' willingness to stay with Ellie as well as their generous graduation gift to Scott, we loaded up the car and headed out for California.

Our first day we went to Legoland. I honestly don't think we could have picked a better destination for our family. Mason was in Lego heaven as he admired all the Lego creations around the park and could have spent the entire day in the Star Wars mini land. Brynn turned out to be a roller coaster maniac and couldn't get enough of all the rides that were perfectly geared towards 5-12 year olds and provided just enough thrill without being too scary or intimating for her. Miles was excited he was tall enough to ride almost all of the rides and the lines were generally short and quick because we all know waiting isn't a strong point for any 2-year-old. In the few lines that moved a little slower they had Lego tables that the kids could play at while we waited and most of the time we were dragging them away from the tables when it was our turn to ride the ride. Scott and I were just glad we weren't having to deal with the stress and crowds of Disneyland. Don't get me wrong, I absolutely LOVE Disneyland, but it was so much more low key at Legoland and that is exactly what I needed right now. We didn't have to make a plan of attack and race around the park at opening to get fast passes and spots in lines. We just casually strolled around the park enjoying things as we went along and were able to do everything we wanted to in one day including spending some time at the waterpark in the afternoon. We lucked out that our kids were all the perfect heights to optimize our experience. They are super strict about height requirements and check at the beginning of every single ride. They have a minimum height requirement to ride the ride with an adult and a minimum height requirement to ride the ride alone. It worked out perfectly that Mason was tall enough to ride on his own and Scott and I could accompany Brynn and Miles and we all got to ride the rides together. If you know Mason then you know that no trip to Legoland would be complete without a souvenir of a Lego set or two.  The kids had all been saving their money, including all of their birthday money, for months in preparation for this trip and so at the end of the day we went into the Legoland gift shop that has every Lego set you could ever want and let them buy some sets. You have never seen happier kids. Even Miles, who fell in love with Lego Duplos on this trip, bought a little Lego Duplo truck set that he still plays with every single day. When we got back to the hotel late that night Miles and Brynn crashed, but Mason couldn't wait to build at least one of his sets so he stayed awake, working by the light of a lamp at the perfect little Lego table that was in our hotel, until he was done building his set. 

Our very first ride left us without a dry spot on our body. Good thing it was nice and hot all day.

Mason and his favorite Star Wars character Baba Fet

Miles was playing with this figurine like it was a real child. I'm not sure he knew it wasn't.

Chima 4D movie

Duploland. One of my favorite places. It felt like the kids had shrunk down and lived in a world of Legos. 

The Xbox zone where they have all the different Lego Xbox games you can play. Of course Mason loved it.

Miles fell in love with Lego Duplos while we were there.

The next morning we just let the kids spend some time playing around the hotel room with their new legos. It is always nice to have some downtime after a day at an amusement park. I have to mention that Scott and I have become big fans of staying at hotels that offer family suites. We have stayed in suites the last few times we have gone on family vacations and it is heavenly. We put the kids to bed in their room and then shut the door and are able to watch a show or movie in our room, rather than putting the kids to bed and then us sitting in a dark room trying not to make a sound and wake any of the kids. 

Since it was Sunday we decided to take the kids to see the San Diego Temple, which was beautiful as always.

After the temple we went to the Mormon Battalion visitor center in Old Town. I was actually blown away at how awesome it was. The kids genuinely enjoyed it and so did I.  I learned so much about this part of pioneer history that I never really understood and came away from it with a strengthened testimony of how the Lord answers our prayers. 

We spent the rest of the day at the beach. I just can't put into words how much I enjoyed our time at the beach. Watching my kids playing in the waves, building sand castles, and burying each other in the sand made me so happy. These are the kinds of memories I remember from my childhood with great fondness and I am just so grateful I got to make these memories with my kids.

After our day of rest we were recharged and ready to do Sea World the next day. Once again, it was such a great fit for us. It had some great rides, fun shows, and plenty of sea animals for the kids to be fascinated by. The best part was there were no lines and we would arrive at the shows just a few minutes before they started and get prime seating. Mason and Brynn left with new aspirations to be Sea World trainers when they grow up.

Tuesday was our final day in San Diego and we went back to Legoland for round two. As I mentioned before we were able to go on all the rides and see all the things we wanted to on our first day, but the kids were really excited to go back for another day. We are so glad we did, because the crowds were non-existent and there were literally no lines. Several times when we finished a ride they would just let us go again without even getting off. It was the perfect end to our vacation. We stayed until the park closed and then loaded up in the car and started our drive home, stopping in Henderson, NV to spend the night with our cousins, the Stubbs.
The next day we made it home and we were happy to see Ellie after 5 days away. We wish she could have come with us, but truthfully she had waaaay more fun at home with Grandma then she would have had being dragged around all the places we went. I'm hoping this is the last family vacation we will have to take without her, because it just isn't the same when our family isn't complete. A big huge thanks to my parents who made this whole thing happen. It was an amazing trip!

One Year Medical Update

Ellie ready and waiting for tubes to be put in her ears

Ellie has definitely been living up to her title of a medically complex child lately. With our move out of state fast approaching, all of her doctors have wanted to see her one last time and do any tests or procedures that need to be done before we leave and transfer her care to a new team of doctors. This resulted in 12 doctors appointments, 3 hearing tests, 1 swallow evaluation, 2 chest x-rays, 1 surgery to put tubes in her ears, 2 new respiratory medications, 1 hour of chest PT (30 minutes twice a day) added to her daily cares, and 1 new rare genetic disorder diagnosis all in a little over a month. I'm pretty sure that if I got in my car and just pushed the gas pedal it would drive to Primary Children's on its own. Despite us spending more time than ever at Primary's, Ellie has actually been healthier than ever the last couple months. Can it please stay summer forever?
I have decided I want to make a detailed record of how Ellie is doing medically each year so we can track her progress from year to year. So here is Ellie's one year medical update.

Genetics:
In addition to Trisomy 4p, she was given a secondary genetic diagnosis of Cornelia de Lange Syndrome based on clinical presentation along with abnormalities found in gene identified with mild CdLS. (A detailed post on this coming soon.)

ENT:
Had chronic fluid in ears for several months and while we have never worried about her hearing, she failed 2 hearing tests. She had tubes put in her ears in March and participated in a clinical trial for a new kind of tubes that Dr. Park felt would benefit her with her extremely small and extra waxy ear canals (our normal pediatrician can't even see in her ears. The ENT has to use special equipment for her tiny canals.) Hearing test appears to have improved since tubes.
Still has 3.0 Neo trach in place. Has a significant air leak around trach which allows us to hear her voice more. Tolerates speaking valve well and we are starting to increase the time she wears it each day and hope to progress to capping trials soon. Hoping for decannulation next year.
Continues to hold her breath when she cries really hard. Has been having increasing occurrences (at least once a day now) where it escalates until she can't take a breath and she turns an ugly color of purple and then her body goes rigid and her eyes roll back and become fixed and then she'll take a big gasp and slowly regain her color and becomes responsive again. The doctors can't give us any physiological reason why this is happening. I started to worry that she might be having seizures because they are so common in trisomy 4p, but we were informed if they are always brought on by extreme crying then they are not seizures. We recently learned how common these types of episodes are with many 4p kiddos and it has made me worry a little less that we are missing a major problem, but it doesn't make me feel any better about the regular hypoxia her brain is experiencing. We try really hard to sooth her before it escalates and then try to give supportive oxygen to help her recover quicker when it does happen.

Pulmonology:
On room air during the day, but still requires oxygen when sleeping or when sick. Had several chest x-rays when healthy and not eating orally that showed decreased lung volume and patchy opacities. Added scheduled Albuterol and Qvar to respiratory medications as well as 30 minutes of chest PT (percussing her chest and back in 8 different places to help break up secretions and move them out of her lungs) every morning and night. A month after adding these therapies Ellie's lungs sound less coarse, tight, and wheezy than they ever have.

GI:
After switching to Soy formula in December Ellie stopped crying all the time and started tolerating her feeds very well and steadily gained weight until she was in the 15% at 10 months old. But since then she hasn't been tolerating her feeds as well and failed to gain any weight or length from 10-12 months. She still weighs 16.5 pounds and is 26.5 inches long. We are switching her to Ailementum formula to see if the problem is that she has developed an intolerance to soy. If that doesn't help than I will be discussing gastric motility issues that are prevalent in 4p kiddos with our new GI doc in Omaha. We currently give her three 5oz "boluses" over 1.5-2 hours during the day and run her feeds at 40ml/hr for 12 hours at night.
Her last swallow evaluation in March was her best one yet, but it had been so long since she had eaten anything orally that she had developed a pretty bad oral aversion. If we even tried to touch her lips she would gag and shutter and cry. We gave up trying to get her to take a bottle and just focused on giving her tastes of foods by putting some on her lips and letting her explore the tastes and textures. At first she hated everything, but slowly she has been warming up to her tastes and now she has several "foods" she likes the taste of like spaghetti sauce, gravy, bananas, sweet potatoes, frosting, ice cream, and suckers. She knows when we are eating and gets excited to taste some food.

Opthomology:
All structures in eye are normal, but small. Vision is good. Doctor is amazed at how straight her eyes are considering the prevalence of eye problems in both trisomy 4p and CdLS. Has been having regular check ups to monitor her tear ducts that remain clogged or possibly malformed or not formed at all (very common in CdLS). At this point she doesn't require surgery to fix it, but may down the road.

Cardiology:
Ellie's heart rate becomes irregular and drops into the 50-60s at night when she is deep asleep. After several echos and a holter monitor the doctor doesn't know why her heart rate does this, but there are no structural problems with her heart and it is not negatively affecting her perfusion so it just means her monitors alarm a lot more during the night.

Physical Development:
Latest assessment with Kids on the Move puts her at a 5 month old level in both physical and cognitive development. She rolls well, is starting to sit independently, but still does not bare any weight on her legs. She is starting to open and useher hands more but lacks any real fine motor skills.

Easter

Easter Sunday was a special day for our family this year. RSV season was over and the doctors finally gave us the go ahead to start taking Ellie out more, including taking her to church. After nearly a year, we were finally able to attend church as a family of six. Ellie did great and even flashed some darling smiles to a few select people. Even though I spent the majority of sacrament meeting wrestling kids on and off my lap, I was able to reflect a lot on the gift of the atonement and the significant role it has played in our life the last year. It was a wonderful Easter.