Mason's Night Meds.

I wanted to document just how much medication I am asked to give my child everynight.  Keep in mind he gets meds 3 times a day.  I poured them all into a cup together to see how much it would be if I had to ask him to drink them down every night. 

 This is acutally how I give them to him.. Just squirt them on down his g-tube.  Thank heavens for that.  Can you imagine that fight everynight?  Time for meds!!  No thank you.  His tube is a port right into his stomach so I just have to plug in his tube and push them down.  It's so much nicer.  Still incredibly sad everytime I have to give them to him.

Sick again...

And then this happened...  Cellulitis.  You can kind of see that his eye hasn't really normalized..

Mason's EEG

Mason had a rough September and most of October - health wise anyway.  After his eye surgeries were all handled he came home from school very irritable one day.  I was holding him on the couch and looked at his sweet face and noticed that his left eye wasn't tracking normally.  That is actually an understatement.  It was rolling around like it was possessed.  Crazy eye.  That led to phone calls to the Dr.  

 Which led to a visit to the ER, which led to a visit to the ophthalmologist and a head CT.  Which led to a visit to our pediatrician.  Which led to a visit to the Neurologist, which led to an EEG, which led to another ophthalmologist, and back around again to the pediatrician.  With all of this you would think someone somewhere could have any idea why his eye would suddenly go crazy.  You would think that and you, like me, would be wrong. 

 Ethan really wanted to come and comfort him for his EEG test.  I couldn't bring myself to let him miss school for that.  Someday I know I'll regret that.  But I did promise him I would take pictures of the event.  Mason has had so many EEG's done and I don't think I've ever documented it with photos until this time.

 These people were fast.  They were great.  Mason was so tired because you have to sleep deprive them for the test.  He had a great nap.

 He wasn't too thrilled having all of those probes stuck to his head.  I had to intervene and cuddle and sing songs to hold his curious little hands away.  He failed the test... meaning that the test showed significant seizure activity.  Nothing conclusive enough to give us any answers for the crazy eye..

Birthday Treats

Ezra loved basking in the fun of his birthday for days.  He is just like me.  Celebrating as long as he can get away with it.  He batted his cute little eyes asking for birthday suckers and balloons for at least a week!

 He has a few little spots in the house he escapes to enjoy his treats.  The shoe basket is one of them.

 This boy sure loves a good sucker!  What a fun 2 year old.

Having Breakfast

Ezra felt like making his own breakfast one morning.

 When he was done eating he cleaned it all up by brushing it on the floor.  What a good boy.

Ethan's Little Notes~

Ethan gets home from school later than some of the neighbor kids and by the time he is starting his homework, they are finishing up!  They come over to play and we have to tell them that he can't play until his homework is done.  One day I went out to get the mail and came inside to find this note on our front door.  He was just letting his friends know that they didn't even need to knock or try, he 'can't play yet!'

Ezra turns 2!

 For Ezra's 2nd birthday Ethan decided that he wanted to have a costume party.  Ezra is TERRIFIED of all things costume, but he did pretty good.  The costumes were pretty mild.  It took me a while to convince him to even put on his pumpkin.  (We're trying for Curious George for Halloween, we may work up to it!)  I couldn't get him to look up at me for a picture of him.  This was the best we could do.

He was very excited about opening his presents.  That was a lot different than his first birthday where we couldn't convince him to open another present.  I loved watching him.  He was so excited to have friends there and presents to open!  Fun day.

Mason was the best costume of the party by far.  He liked having the kids over too.

 I loved that he was so excited for all things birthday party!  He loved being sung to and blowing out his candles.

 He blew out his candles over and over the entire song.

 How darling is this brand new 2 year old.

 Yay!  Happy Birthday to my favorite 2 year old.  I don't know how I would survive a day without you!

Here's what was posted on Kyle Korver's facebook fan page about our ramp!~

Our Next Project: A ramp/deck for the Shaw family


.by Kyle Korver on Sunday, October 10, 2010 at 4:53pm.

Spencer and Kerry Shaw, married 10 years, were college sweethearts at Brigham Young University. Three years into\ their marriage they became parents to the first of 3 beautiful boys, Ethan (7), Mason (6), and Ezra (2). Their son Mason was born prematurely with a rare genetic skin disease. When he was born he had a collodion membrane which resembles a yellow, tight and shiny film that covers the whole body. This membrane then undergoes a peeling revealing the underlying skin disorder. Kerry described him as a “raw baby” after the peeling process had taken place. As a result of complications from the genetic skin disease, Mason suffered brain damage causing many physical and mental disabilities. These include a seizure disorder, cerebral palsy as well as being deaf and blind. He is and will remain wheelchair bound.

Kerry describes Mason as charming little boy. “Everyone falls in love with him. Within just minutes of meeting him he wins you over.” Their sons, Ethan and Ezra are amazing with him. Kerry said she loves to watch them with him and they are absolutely adorable.

Kerry’s boss and the family support group at the Utah School for the Deaf Blind informed Kerry of the Seer Group and the work we do for families in need. An appointment was set to look at their house and we have the privilege of working with the Shaw family to get a ramp built for them. However, there was a little bit more work that needed to be done before we could start. Their home had some foundational issues that needed to be rectified before we could begin work on the ramp.

Kerry contacted cement contractors and landscapers. Tri-L Concrete is the concrete company that performed the foundation work needed and was gracious enough to donate the labor and all of the supplies needed to fix the foundation. Morty’s Landscaping excavated their yard to make it possible for the concrete company to do their work and will be coming back to help put it all back together. They were able to give the Shaw family a huge discount. Several neighbors, family, and friends rallied around the family to break up concrete and help in any way they could. This family is so incredibly grateful for all of the help that has been provided from everyone involved.

The foundational issues have been resolved and we will be able to begin our end of the renovation. Currently, they cannot get his chair into the house and when asked how this ramp would change their lives, Kerry told us that at the moment Mason has to lay on the floor because he is getting too big for her to pick up and carry everywhere. Therefore, he is being left out of the simplest of things such as dinner time. Being able to bring his chair into the house will allow him to sit at the dinner table with his family. All in all he will be able to spend more time with his family which will improve his quality of life. She said “It’s going to be great.”

This is what we get to do at the Seer Group. We get to help improve the quality of life for families. We get to help families spend time together at the dinner table. Things that so many of us take for granted. Moments that are so precious to families we get to make possible. You get to make it possible because of your support. We thank you for that support because we could not do it without you.

Link to Kyle Korver Facebook story

These ramps are funded significantly by the sale of t-shirts designed and sold by the Seer Group.  This is Kyle Korver's foundation.  Please go to this website here and support his efforts.  Proceeds benefit families like ours.

Parent Conference

Every year we attend a parent conference for parents with deaf/blind children.  This year I had the opportunity to participate on the committee that plans the conference.  It was a lot of fun and we learned a lot and got a night away!  Spencer and I were in charge of taking 'welcome photos' for all of the couples to take with them to remember this wonderful conference.  Cheesy and fun.

Tricks by Ezra

Ezra loves to do tricks for us.  I love to watch the tricks!  We make a perfect team.  I'm sure he learned how to put on a show from watching Ethan's 'kick shows' or his 'awesome moves' shows.  Why he started I don't know, but I love to ask for a trick and see what he comes up with!  This day I was lucky enough to have my camera!

I just wish I could add the voice.  He does a 'wo wo' that sounds like he's wobbling on a balance beam!  I wish he'd stay this flexible.

This trick was especially fun.  He learned to close his eyes when you ask him to.  Pretty advanced.

Playing around~

With the backyard all torn apart we moved our 'toys' to the front yard!  The kids love it.  I think it looks ridiculous, but as long as they are having fun.  Ezra just loves playing in the dirt.  That makes it less likely for me to take him out playing, but I love sitting in the shade in the front yard watching the kids play together.

Ezra LOVES his brothers.  He just wants to be a big boy and do all the things that Ethan and his friends do.  Ethan is such a great big brother because he LOVES his brothers too.  He just wants to play with them too.  He loves including Ez with all of his buddies.

He even lets Ez choke hold hug him~!

Mason absolutely loves to spend time outside.  I can't wait for the backyard to be all finished so he can spend time back there too. 

A Weekend Getaway~

We had a chance to spend a weekend away just as school was starting.  It turned out to be such a fun little trip.  We didn't go far which made it even better!  The first night I took Ethan and we checked in and had our own special night away together.  We literally checked in the hotel and I asked him what he wanted to do and he was already putting on his PJ's watching Clone Wars on the cartoon network.  We don't get that.  That's all he wanted to do!  Oh yeah, and try on the robes.

They had a carousel there for use if you bought tokens.  Or if you are as cute as Ethan and ask really nice I guess.  He and Ezra rode that thing 4 times without ever once buying a token.

Ezra just yelled, "weeee" and "again" the whole time.  He really had fun.

Mason hated it.  We watched.  That was better for all of us!

They had a little goat farm you can walk up to and pet and feed the goats.  After Ezra and Ethan sat picking grass to feed them we walked down and bought the baggie of food at the gift shop.  They both loved feeding the goats.

It was darling and frightning how fearless these kids were with the goats.  Ezra didn't hesitate one bit.  He wanted to just hug them.  He tried a few times and they did not like that nearly as much as they liked him feeding them dog food.

Does it get more darling than this?

We went on a walk.  I took pictures.

 Really the big thing for Ethan was the indoor outdoor pool.  He swam at least 6 different times.  I hated it because it was freezing.  I even complained a little bit about how cold it was when we were checking out.  Ezra couldn't swim because his lips would turn blue after 5 minutes.

With our 2 nights we got 2 free Sunday buffet certificates.  These were worth $40 a person.  This buffet was good.  Really good.  I feel like it was wasted on me and Ethan because we aren't really huge eaters.  I know someone could have put away a lot more food.

This is where we stayed.  We really hope to go back sometime soon.

Such a big helper!~

Early this summer it came time to finally fix the broken posts in the back fence.  Spen went to work and immediately had a shadow.  Ez wouldn't let him work without being there to 'help.'  As the mom I only insisted on the helmet.  He was happy enough to oblige.

He was very involved with the whole process..

until the backyard neighbors came out with treats and pools and water toys to temp him away!

Even though Spen just wanted me to take him away so he could work faster I secretly knew that he was loving having his little helper every step of the way!

One day Spen'll be wishing he would want to help him.

Front Yard

Our front yard has always been the place we hang out.  Hopefully when our backyard is put together it'll be a place we go.  It's just so much better for Mason and we can all sit and watch the playing show.  The kids love when Reg (grandma) and Grampy (grandpa) come over and can stay to play with them.

Ezra's hair before Spen got to it.  I loved it.  I was sad.