Blessing Day

Today we were finally able to bless Ellie. In our church, we don't baptize babies. Children get baptized when they are eight years old (or any age after that for converts) and they are able to choose for themselves. But we do have baby blessings. Basically, an LDS baby blessing is where a man with the priesthood (usually the baby's father) officially gives the baby a name on the records of the church and a blessing. The baby is usually wearing white, and although a baby blessing is about more than the clothes they wear, there is often a lot of focus put on the blessing outfit. With that being said I have always loved the idea that a girl's blessing dress is the first of three white dresses she will wear in her life. The other two being when she is baptized and gets married in the temple. Sadly, I'm not sure if Ellie will ever have the chance to have either of those white dresses during her life so I really wanted her one and only white dress to be something special. I like it when a blessing dress represents more than just the latest trends and so I was planning on Ellie wearing the same dress my mom was blessed in as a baby (remember how Brynn wore the dress I was blessed in). But even at almost 4 months old the dress was way too big for Ellie. As a matter of fact, all the dresses I looked at were too big for her. So my amazing mom, who has a very special relationship with little Miss Ellie, offered to crochet a dress for her that would be just her size. The really amazing part is she decided to do this only 48 hours before Ellie's blessing day. We found the perfect pattern and two days later this was the finished product.

The closest thing to a smile she would give us during our photo shoot.

Words cannot describe what this little dress means to me. This is a very special dress for a very special little girl. It is simple yet amazingly beautiful and radiates the love that went into making it. The pictures don't even begin to capture how beautiful Ellie looked in her dress.

We blessed Ellie at home with just our immediate family rather than in church since we are still a little leery of taking her around a lot of people. Scott gave Ellie a very sweet and tender blessing that only a father could give. It was a wonderful day for Ellie.

The Fam

Grandma Nancy and Grandpa Val

Pooky and Papa

Hale cousins. AZ cousins skyped in for the party.

Grandma Linda and Grandpa Mike

Mama and her girl.

Mom and Dad

New Beginnings

It's time for the obligatory back to school post.

Mason, the first grader.

So far Mason is loving first grade. He is thrilled to be in Mrs. Nelson's class since "she is the nicest first grade teacher". The things he was looking forward to the most about going to first grade all day were eating lunch at school and having three recesses. It's been a big adjustment for all of us having Mason gone all day, but it is fun to see all that he is learning while he's gone.

Sporting his Lego Chima backpack.

Brynn, the 2nd year preschooler.

The two weeks between when Mason started school and Brynn started preschool were the most painful weeks of Brynn's life. She missed Mason so much and just couldn't wait to get back to Mrs. Young's class. The day finally arrived and she was so excited!

With Mason gone all day Brynn has promoted Miles from nuisance to playmate. He follows her around all day doing and saying anything she tells him to. He loves getting all of her attention and she loves bossing him around so it works out perfectly.

 Brynn, Miles, and I were able to sneak in a little outing to the splash pad one day, but I had to give Brynn strict instructions not to tell Mason about it because just that morning he had informed us we weren't allowed to go do fun things while he was at school because that wouldn't be fair. Sorry dude!

These two had so much fun running around playing together. I kept having flashbacks to two years ago when it was just Mason, Brynn, and me going on fun outings every day.

Ellie started her own kind of school last week. She started occupational therapy with Kids on the Move. One of the first things we are working on is her clenched hands. She now gets to sport these super cool braces on her hands to help bring her thumbs out. It's fun to see how much more she is opening and using her hands already.

A side by side comparison to show how the braces help her thumbs.

It should be a great school year!!

Family Swim

Ellie joined us for her first family outing at a fun Labor Day BBQ and swim party with our cousins, the Jenkins. Don't let her face fool you, she loved her first swim...or at least she didn't hate it.

This is what our summer was supposed to look like!! Better late than never.

Just for fun I threw in some pictures of all the kiddo's first time swimming.

Top Left: Mason 2 months old   

Top Right: Brynn 3 weeks old

Bottom Middle: Miles 5 months old

Bottom Left and Right: Ellie 3 1/2 months

Playtime

Playtime around our house tends to have a strong medical theme to it these days. I guess that's what happens when your house is transformed into a hospital. Last week I overheard Mason and Brynn playing and there was a lot of talk about suctioning, oxygen, and trach noses. I peeked around the corner to find Optimus Prime and Minnie Mouse sporting trachs of their own.

 

 

This is a scene I will never grow tired of seeing. It melts my heart how much they adore their baby sister and want to be like her.

Mason and Brynn aren't the only ones who are envious of all Ellie's cool accessories. Today Miles would not leave Ellie's pulse ox lead on her foot alone. So we pulled out an old blood pressure cuff and made a monitor for him. He was thrilled!!

 

When Ellie was in the hospital after getting her trach she got a special delivery from the Coal Team at Union Pacific. All of Scott's coworkers had sent her this darling Build-a-Bear. I don't have enough kind things to say about the Coal Team and how supportive they were through all of this, even though Scott was just a summer intern. We definitely felt a part of the U.P. family.

One of the respiratory therapists gathered up some old trach supplies for us so we could give her bear a trach to match her. I love it!! 

I'm not the only one that loved it. Mason and Brynn have been begging us to go to Build-a-Bear Workshop for months, so when Ellie got one they were green with envy. I am so proud of both of them and how well they have handled all the crazy ups and downs we have had this summer so last week I surprised them and took them to Build-a-Bear to make their own bear as a back to school gift. The cutest part was when we got home they both wanted their Bears to have trachs like Ellie's bear. Thankfully the respiratory therapist had included a couple extra trachs and Ellie was happy to donate the rest of the supplies. I love the finished product!!

Mason with his Black Bear "Minedee" (pronounced Mine-Dee) I have no idea where the name came from.

Brynn with her colorful bear "Cinderella". She's not quite as original as Mason.

For the record I wanted to get Miles a bear, too, but Scott insisted he is too little to care and we have plenty of bears around the house he can have for free. I see his point, but I still feel bad he is the only one without a special bear. One day when he's a little older I'll take him back and let him pick out a bear, too.

Good Old Utah Summer

When we realized there was no way the kids and I were going to make it out to Omaha this summer I was devastated. This just added to the ever growing list of plans we make that never seem to work out. The only consolation was watching Mason, Brynn, and Miles enjoy a good old Utah summer that was extremely reminiscent of my childhood summers. Get ready for some serious overload, because I'm about to cram their entire summer into one post.

• Miles became best buddies with Grandpa Val. They would start their day bright and early together with Miles watching my dad shave (I did the same thing as a little girl) and they would spend the evenings playing "Grandpa Fetch" a game Miles created where he stands in the back of Grandpa's truck and throws balls out for my dad to chase. 
  
• Mason and Brynn spent every spare moment riding their bikes and scooters around the neighborhood with their friends.
  
• Brynn became a whiz on the Strider bike and then took off riding a two wheeler without an ounce of help.
  
• Miles visited the neighbor's chickens countless times a day.
  
• My mom made sure the big kids had plenty to keep them busy and entertained throughout the summer. Tennis lessons, golf lessons, and swim lessons to name a few.

  

  Kennedy, Cannon, Mason, and Brynn at Golf Lessons.

  
  
  
  
  
  
  
  
  
  
  
  
• Countless trips to the swimming pool. Riverside and Aunt Marilyn's were their favorite pools this year. Puddlejumper floaties for Brynn and Miles were the best investment we ever made. Brynn is finally completely comfortable in the water and a little fishy who loved jumping off the diving board and diving for toys on the steps. Miles doesn't have an ounce of hesitation in the water and jumps off the diving board whether anyone is watching or not and miraculously made it through the summer without drowning. Mason is a pro swimmer who has moved on to doing tricks off the diving board and hand stands in the shallow end.
  
  
  
  
  
  
  
• On the days they didn't make it to the pool the hottub was an acceptable substitute.
  
• Brynn was thrilled to be living just a few houses away from her best friend Emmett. She would drive the black truck over to his house to pick him up and they would cruise around together like they were 16 years old.
  
• My dad would tell his famous Snowflake bedtime stories to Mason and Brynn every night. Every story is about how he, Evan, and Ivan (his real childhood best friends in Snowflake, Arizona) saved Snowflake from whatever giant creature Mason and Brynn chose that night. I have so many great memories from my childhood sharing these same stories. Soon Mason and Brynn did a great job telling their own "saving Orem" stories.
• Miles ate watermelon with Grandpa Val every morning and every night.
  
• My parents took the kiddos to the Allred Family Reunion at Bear Lake while we were in the hospital with Ellie. Kids got to experience jet skis and a "motorboat", as they both refer to it , for the first time. I think their favorite part was just playing with all of their cousins (including 2nd cousins). I stole these collages off Whitney's blog since I wasn't there.
  
  
  
  
  
• Living with Grandpa Val means a lot of swag from every Chamber of Commerce and Utah County business event. Mason was in hoarder's heaven!!
  
• We were able to sneak in a trip to the zoo for their lego exibit while Ellie was in the hospital. This was Miles' first trip to the zoo since he's been old enough to appreciate it and we had so much fun watching him get excited about each and every animal. I think the rooster walking around was his favorite of all the animals.
  
  
  
  
• Mason was introduced to the world of night games and was a big fan!!
• The boys got their annual summer buzz. Miles wasn't so sure about the buzzers and took off after one pass. Grandma is a lot nicer than Mom and Dad and didn't want to hold him down crying, but the damage had been done and there was no other option. The sucker at the end was well worth it.
  
  
  
  
  
  
  

That is just a glimpse of all the fun these kiddos had living at Grandma and Grandpa's house.
How do I even begin to thank my parents for all they have done for us this summer? My mom put her life completely on hold and became a full-time mother to my children. She split the long night shifts taking care of Ellie with me. My dad started off his summer by turning around on his way down to St. George for a golf weekend when he heard we were having our baby and has since golfed less than I have ever witnessed because he would come straight home from work each night to help with the kids. They gave my older kids stability and a sense of normalcy that I couldn't provide. They had to fight their grandparent instinct to spoil and instead provide consistency and discipline. I have worked hard my entire life to be self sufficient and so as much as I would like to be able to say I could have done it on my own the truth is I couldn't have. There is no way I could have given my kids the wonderful summer full of positive memories that they had. In fact, I honestly don't think I could have even survived this summer without them.  Thank you Mom and Dad! 

Nothing but a Rainy Day

To anyone else, it might have appeared to be like any other Saturday, but to us it was so much more. It was the first day our family of six had been under the same roof from sun up to sun down without any help from family or friends since the day Ellie was born. It felt wonderful. It felt right. The best part of the day was when an afternoon thunderstorm rolled in. The kids were anxious to get some use out of the umbrellas they got for their birthdays.

But then the rain really started coming down. I dare say it was the hardest I had ever seen it rain and after just 15 minutes our street turned into a running river. (Scott informed me this storm was nothing compared to Omaha storms.)

The rain let up and so we quickly fashioned some garbage sack ponchos and headed out to play

We made a game of filling buckets and watering our dead lawn.

 

An hour later the streets were dry again and it was as if the storm had never happened. 

I am so grateful Ellie happened to be sleeping soundly in her crib during this little window of time so I could be spontaneous and make some memories with my big kids. It felt so normal. It felt like a glimmer of hope that life will go on. 

Just like this storm the last little bit of our life has been the most intense downpour of trials I have ever experienced. But it feels like the storm is letting up. We are still wadding through the giant puddles left behind but are starting to enjoy little moments along the way. I keep telling myself that just like the street, one day, many years from now, the water will all be gone and there will be little evidence of this storm we have endured. It will just be a memory. But like the grass, we will benefit from the extra water and hopefully be a little greener.

Trisomy 4p

I've shared a lot of details about Ellie's life here on this blog, but there is one part of her story I have kept to myself. The part of her story that hurts so bad I don't want to talk about it. You may recall my very first post of Ellie's Story when I mentioned the concern about possible genetic abnormalities. Well, I may have downplayed that a bit. Ever since Ellie was born there have been a lot of little things about her that don't quite add up. When the pediatrician was assessing her after she was born he asked us if she looked like our other kids, not because he was curious whose features she had, but because he felt she didn't look quite right. Some of the things that were concerning were her thick and flat upper lip, low set ears, high arched palate, short and thick neck, abnormal creases on hands, underdeveloped pinkies that stop at the second knuckle one with a partial nail and the other with no nail, low birth weight and difficulty gaining weight, along with all of the eating and breathing problems that have been persistent throughout her life. Yesterday we met with the geneticist to follow up on some genetic testing that was done during her last admission. The tests showed she has a rare chromosomal disorder called Trisomy 4p. Basically she has a complete extra "short arm" of her 4th chromosome that is attached to one of her 15th chromosomes. There are only about 100 documented cases in medical literature, so rare is an understatement. Because it is so rare and every case is so individual, we don't know exactly what Ellie's development will be like, but we do know that she will have severe delays in her motor and cognitive development. We just hope to provide her with every opportunity we can to reach her full potential, whatever that may be.
If you would like to know more about Trisomy 4p you can check out this or this article. That is pretty much all we know, so once you have read those you know as much as we do!