Mother Brynn

At 4 years old Brynn has already decided what she wants to be when she grows up...a grandma.  "But first I have to be a mom", she will explain to you. Brynn is already quite the little mother around our house. She loves to sit on the counter to help me cook, make her job list and check things off as she completes them, tell Scott how to give Ellie a bath and do her trach care when I'm at work (in actuality he knows exactly what he's doing, but Brynn seems sure that if she is not right there telling him that we don't take Ellie's g-tube out then he will have no idea what to do), and bosses around Mason and Miles. She really has become my right hand gal. I am dreading the fast approaching day she starts kindergarten and will be gone every day. I often sit back and watch Brynn in amazement. She has such a good heart and wants nothing more than to do what is right and make others happy. She is always singing and dancing around with a big smile on her face. She is pleasant to be around and easy to get along with, which has led to her having a lot of friends, boys and girls alike. I have no doubt she will be an excellent mom and grandma and that she will achieve anything else that she puts her mind to in this life. When I grow up...I want to be more like Brynn.

New Friends

Today we were lucky enough to spend some time with our new friends, the Rodgers. Sarah has become a wonderful friend of mine over the last 6 months through the 4p facebook group. I have learned so much from Sarah and Blake and their amazing children, Stetson (11) and Brooklyn (8), who both have trisomy 4p. I was thrilled when I found out that doctors appointments were bringing them down to Utah and we would finally be able to meet some of our 4p friends in person. We met up with them at the Dinosaur Museum at Thanksgiving Point. Stetson and Brooklyn fell head over heels in love with Ellie and always wanted to know where the baby was and what she was doing. Watching them love on her was pure sweetness! They are the most darling and well behaved kids (they especially shined in the latter area next to Miles who was taking advantage of us being distracted and climbing in all the exhibits and setting off emergency exit alarms -- mother of the year right here). I loved watching their little hands that remind me so much of Ellie's explore new things, listening to everything they had to say, and watching them spread love to all of us! It has made me so happy and excited to watch Ellie grow up and hopefully be able to experience similar things with her.  It was so much fun for our whole family get to know the Rodgers a little better.

Sarah and soon to be baby boy, Ellie, Rachel, Stetson, and Brooklyn

Digging for Fossils.

Playing with Ellie was way more fun than playing in sand and water.

Love

Last night as I lay in bed looking at the pictures on my phone, my heart was so full of love as I revisited precious scenes that have taken place lately. So in honor of Valentines Days here is a little peak at some of the things I love most.

This could be my favorite picture of all time. 

Pooky and Papa come visit the kids every Saturday. Miles always looks forward to their visit. This particular day he wanted nothing more than Papa to do his quiet book with him. My sweet Grandpa didn't even hesitate to get down on the floor and play with him. Love this!!

These two and their Legos.

Love these little belly rolls. Ellie weighed in at 14lbs at her last appointment, putting her in the 2%.

These two have the sweetest relationship.

Been loving the snow this winter.

 

Scott turned 31 and decided it was time to try a new look. 

I am a big fan!

This little girl has her Daddy wrapped around her little finger. 

We were at Mason's school and saw this hanging in the hall outside the classroom. We weren't surprised at what made the list of things he loves.

Then we stepped back and looked at all of the others and noticed a common theme of loving Jesus, family members, and Mrs. Nelson. It made us laugh that we didn't make the cut over animals, brains, and ninja turtles.

This little one is 9 months old (in 2 days).
One of her favorite things to do is kneel up to the couch cushion and play her piano. Who knew therapy could be so fun.

 But the most exciting news is she has started sitting!!! 

At least for a short period of time before she starts to fold over in half. Still working on building that core strength. But we are pretty impressed!!

Happy Valentine's Day!

Naughty Monkey

Miles' favorite book right now is Dear Zoo. How did it take me until my third child to discover this classic? In the book a child writes to the zoo and asks them to send him a pet. They send him animal after animal but he sends them all back for reasons like being too tall or too scary. Miles favorite page is the one with the Monkey that is too naughty.  So lately when Miles does something that makes me want to pull out my hair I tell him in a teasing and loving way, "You are a naughty monkey, I'm going to send you back!"  The last few days Miles has been announcing when he gets into trouble by saying, "Miles naughty monkey....Miles dump cereal on floor." or whatever else he has done. It's a good thing he is so darn cute, because he sure is a busy and naughty two year old, but we'll keep him all the same.

Rainbow Looms are now only allowed when Miles is sleeping.

One day I went in to get Ellie up from her nap and apparently the stuffed animal fairy had visited her while she was asleep.

Lessons Learned

A few months ago a sweet friend of mine shared this quote from Elder Ronald A. Rasband's April 2012 LDS General Conference talk with me.

"If you come upon a person who is drowning, would you ask if they need help—or would it be better to just jump in and save them from the deepening waters? The offer, while well meaning and often given, “Let me know if I can help” is really no help at all."

Jump in and save us is exactly what countless family, friends, and neighbors have done for us the last 9 months. They have shown by example that there is so much more to compassion than feeling sorry for people. That true compassion is shown with Christlike love and service.  I would consider myself a compassionate and service oriented person, but I now realize that while I am full of good intentions, I do not execute them often enough. I would probably watch a family member or friend who lived far away going through a difficult situation and think, "I really wish I lived closer so I could help" instead of finding something I could do, like getting them an Amazon Prime membership so they could get free 2 day shipping on diapers and anything else they need rather than having to run to the store, like my sister-in-law did for me. I probably would say, "I would love to help more but I have my own family with 4 young children I have to take care of" instead of offering to do their weekly grocery shopping in addition to my own like my other sister-in-law did. I probably would think I had helped enough after arranging a month of meals being taken into the family instead of throwing a freezer meal shower for them and filling their freezer with even more meals like my ward did for me. I probably would think "Maybe I can help watch her kids when she goes back to work" instead of showing up with an envelope containing enough money to pay their monthly bills so she wouldn't have to worry about going back to work for another month like a wonderful friend of mine did. I probably would give some type of contribution to their Christmas but doubt I would plan and execute a fun 12 days of Christmas for them, or pack a fun filled and generous package and ship it across the country to them, or go and pick out new clothes for all the the kids the way others did for us. I probably would pray that their mom would be able to meet all of her children's needs rather than being an answer to her prayers and providing her with the things she needs to better care for them all like so many people have done including the person who bought this new chair for Ellie's room that has seriously changed our life. It seems like such a little thing, but it means several times a day I can keep Miles and Brynn close to me instead of sending them away when I'm taking care of Ellie.

The kiddos loving our new double rocker!

Storytime

Just because she's the cutest thing ever!!

A professional masseuse being sent to my house to give me a massage, bags of groceries being dropped off, getting phone calls daily from friends and family at the store asking if I need them to pick anything up, playdates scheduled for big kids, neighbors mowing our lawn for several months, someone weeding all of our flowerbeds that hadn't been weeded all summer, sisters from our ward coming and cleaning our entire house, packages arriving throughout the summer full of fun things for my big kids so they wouldn't feel forgotten, friends and neighbors driving Brynn and Mason to and from school every day so I don't have to take Ellie out,  a friend of a friend giving us thousands of dollars in trach supplies and equipment they bought when their little girl had a trach, my aunt and grandma finding and getting Ellie custom made sleepers for g-tubes, my mom coming over every morning and afternoon to help establish a good routine and consistency for the big kids when school started and we were still getting used to all of Ellie's care, a neighbor letting us keep her generator at our house in case the power went out until we were able to get our own, friends stopping by and staying in touch even when I'm horrible at returning phones calls and emails, the list could go on and on.  I know there are many people who stepped in and did things for us when things were spinning so far out of control that I wasn't even aware how things were getting done. We have had to turn away just as many people who were wanting and willing to help, but we already had more help then we knew what to do with.

At times I have been embarrassed...even humiliated...by the amount of generosity and help we have been the recipients of. We're not "those people". I never in a million years would have imagined us being in a position that required so much help. To have my independence and self sufficiency taken away was devastating for me. But I have been humbled as time after time when I felt like the obstacle that stood before me was insurmountable, I was lifted up by all of these amazing people and somehow I got through it. It wasn't always the physical things people did. A lot of time it was simply an outpouring of love and support that gave me the strength to carry on when I didn't think I could.

I am happy to report that things have settled down and we are doing well. We are firm believers in self sufficiency and while we are so grateful for the help we have received during this unexpected crisis, we feel that it is now our responsibility to figure out how to create a new normal and learn how to take care of our family even with our added needs. The last few months we have been working hard to do more on our own and learn how to stand on our own two feet again. Boy does it feel good!! It's amazing the hope and joy that feeling in control of your own life and your own future can bring. We are looking forward to the next few months as Scott prepares to graduate with his hard earned MBA and we are deciding where the next chapter of our family's life will take place. I am personally very excited to finally be in a position where I am able to look around myself and start finding ways to payback all the love and service that has been shown to me. I have promised myself and my Heavenly Father that I will no longer be satisfied just to have good intentions, but that I will go out and do.

Thank you so much to each and every one of you!! We couldn't have done this without you. We love you all very much.

Reading Machine

When I was a little girl my dad nicknamed me his Reading Machine because most days he would come home from work to find me curled up on the couch reading a book. Mason must have caught the reading bug from me because he has turned into a Junior Reading Machine.

Mason has always preferred non-fiction over fiction because he loves to learn facts about real things. It's this thirst for knowledge that has made him the walking encyclopedia that he is. A while back my niece, Rachel Faye, was drilling her mom with questions about volcanoes. When Whitney said she didn't know the answer to several questions in a row, Rachel said, "I think we should call Mason, he'll know all about volcanoes." I love that story because it illustrates perfectly what a fountain of knowledge (albeit random knowledge) Mason is. He'll make a great contestant on Jeopardy one day.

Mason's latest reading obsession is the Magic Tree House series. It is a fictional series that incorporates facts about a certain topic throughout the story. Every book also has a companion "Fact Tracker" book that is a non-fiction book filled with facts and information about the topic of that book. An example is the book Tonight on the Titanic. After reading several books from the series Mason was reading through all the different titles deciding which he wanted to read next. He stopped on this one because he didn't know what the Titanic was. After a brief explanation that it was a big ship carrying thousands of people that had hit an iceberg and sunk on it's first voyage, Mason's mind started going a hundred miles an hour wanting to know everything there was to know about the Titanic. My limited knowledge could only explain as much as Leonardo Decaprio and Kate Winslet had taught me, most of which probably wasn't accurate at all. So the next day at school he found the book in his teacher's library and asked to borrow it. Then he came home and read the book start to finish without a single break except when I read it to him while he ate his dinner because he wouldn't put it down long enough to eat two bites. I loved watching him as he read the book aloud. It was a lot like observing someone watching an action packed, suspenseful movie. There were parts he couldn't read fast enough and would start stumbling over the words because he was so anxious to find out what happened. It didn't stop after the last page was read. When Mason called Grandma Nancy to tell her he had finished the book she was flipping through the channels and ironically the movie, Titanic was on TV. When Mason found out there was a movie he was going crazy because he wanted to see how the ship tilted out of the water and broke in half.  Not feeling comfortable showing my 6 year old Hollywood's version, the next day we looked up and watched several History Channel documentaries on the Titanic. Mason couldn't fall asleep that night because he was going over and over everything that happened in his mind. The following day he begged us to take him to Barnes and Noble so he could spend all of his hard earned money on the Titanic Fact Tracker. He finished reading it in a day. As soon as he finished it he sat up and announced he was going to make the Titanic out of Legos. At first he got a little frustrated because by this point he knew the exact layout of the ship by heart, and he wanted it to be an exact replica. Since he couldn't make it the exact same he decided his would be the shipwreck version that was at the bottom of the ocean because it had a lot of  broken and missing pieces and was green like his Lego piece he was using to build it. I thought he did a pretty good job.

Mason asked me to take a black and white picture because that is all they had in 1912 when the Titanic sank.

Artwork like this can currently be found all over our house.

I love seeing Mason enjoy reading  the way that I do. Hopefully it will rub off on my other kids, too. 

Found Miles like this one day.

The Little Things

A few days ago I walked into the room and my jaw hit the floor when I saw Ellie just hanging out, lifting up her legs and grabbing her toes like it was no big deal! I squealed with excitement as I fumbled around trying to find my phone to take a picture to send to Scott and my mom. They were not going to believe this!

"Look who I caught playing with her toes!"

You might be thinking to yourself, what's the big deal? Don't all babies grab their toes and play with them? Well, yes, they do, and with my first three babies I thought it was just a cute thing that babies did. I now know that it is actually an important milestone that helps develop the muscles and balance needed for sitting. After spending the last three months of therapy trying to help Ellie lift her legs and reach for her toes and wondering if she would ever do it on her own, it is way more than cute, it is amazing! It is just another one of the little things that we took for granted with our older kids. With Ellie, we've learned there is no such thing as a little thing. I have started to noticed that rather than steady and continual progress Ellie seems to go weeks and even months without reaching new milestones and just when I start to get discouraged and fear that she will never progress she blows me away by doing something amazing...like grabbing her toes. Here are some of the other little things that we are celebrating that Ellie can do.

At 8 months old, Ellie is 24.5 inches long and just over 13 pounds. She is about the size and developmental level of a 4 month old. She has yet to roll over from her back to her tummy, but that doesn't stop her from twisting and contorting to roll from side to side as she watches everything going on around her.  It is becoming more common for me to set her down and leave the room only to return to find she has turned 180 degrees and her feet are now where her head previously was.  As previously mentioned, we have been focusing in therapy on building the strength and balance needed for sitting. I feel like she is close to having the strength, but still has a ways to go before she has enough balance.  She has started picking her legs up and kicking them around more, but still doesn't really put any weight on them when we try to stand her up.  

In addition to finding her toes she also found her hands this last week. Now whenever there isn't a toy or person to watch she just entertains herself by intently studying her hands and watching them play with each other up above her head. She has busy little hands and is getting better and better at deliberately reaching for and grabbing things rather than just grabbing whatever her hands touch. The other day I was rocking her and the whole time she was reaching up and grabbing my hair. It felt so natural and reminded me of when Mason used to play with my hair. She brings everything she grabs straight to her mouth to gnaw on. 

As much as she loves having things like her binky and toys in her mouth she has decided she isn't a fan of having food in her mouth :(  She shutters, cringes, and gags when I try to feed her bananas off my pinky anymore.  She still loves her practice bottles and gets super excited when she sees me shaking a bottle, but unfortunately the doctors believe that her pneumonia last month was caused by aspiration, so we have had to back off the bottles until we can make sure she is swallowing safely.

She is most age appropriate in her social development. She remains very smiley and interactive with us. She has the biggest, brightest smile that she loves to show off. Although we have started noticing a touch of stranger anxiety around people she doesn't know. This last week we experienced what may have been the best "first" I have experienced in all 7 years of motherhood. We were able to hear Ellie laugh for the first time with her speaking valve on. It was magical. I caught the tail end of it on video and I watch it multiple times a day. 

Words cannot describe what that sweet sound means to me.

Thank you Ellie for teaching me that it is the little things that are actually the big things in life.