Spring Teaser

Earlier this month we had a week of nice warm weather, which brought us all outside.  We started to get the yard put together--pruning trees, cleaning out window wells, and just enjoying the sunshine.

J pruning the apple tree.  We don't think it has been pruned in several years.  

I discovered a dead mouse in one of our window wells, so I had J get down in there to get it out and he finished the window wells for me (yes, I am a wimp when it comes to bugs and dead creatures).

In the other window well, he found a live garden snake (probably in hibernation), and the snake became Zuri's friend for a few days.  We weren't sure if the snake would be able to get out on its own (our window wells have a plastic safety cover on the top) and after a couple of days we realized it couldn't, so we provided a stick for it to slither out of the well if it wanted (and it did).  For the time the snake was in the window, however, Zuri's favorite place was on the ledge, watching it, and when she found out the snake was gone and not coming back, she got really sad.  Zuri said that she was sad, and that she misses her snake friend.  It was so cute and yet so heartbreaking at the same time.  She is still talking about her pet snake.



 As spring in Utah happens, we have once again returned to snow and cold.  The last couple of days we have received a good four inches of snow which is slowly melting, but we are looking forward to the nice weather coming up!

A Short Visit

A couple weeks ago my dad came to visit.  He stayed with us a couple days, then went down to Zions National Park with Shin and Heather for a couple days of hiking and camping.  They had fun, and we enjoyed being able to spend time with my dad while he was here.  We will get to see him in a couple weeks for Conference, so it is a special treat to be able to see him so often. :-)

HK

A little over a month ago, we lost the best nurse we had, but we gained a great friend.  Heather (nicknamed HK so as not to be confused with my sister-in-law) has been with us since a few weeks after Kai came home from the hospital when he was a few months old.  From the get-go we clicked, and there have been many nights where I would stay up until all hours of the morning (it was not uncommon for me to be up past one) just talking.  We bonded over books, movies, tv shows, fitness, life, and of course, Kai.  She kept me sane during his blue spells (I went into a mini depression during that time) and she even bought some special diaper rash cream from Germany to help with his bum (that was also during the period where he had that awful diaper rash that wouldn't go away--which we later found out was due to an allergic reaction to the formula).  She was there when they did the bronchioscope in the hospital, where we discovered Kai's airway collapse, and she was never afraid to let us know when something seemed off with Kai (and possible solutions).

So when Heather told us that she had accepted a new job, it was very bittersweet.  We didn't want to lose her as a nurse, but it would also allow us to connect with her on a more personal level.  We were able to meet her family (who are as awesome as she is) and we have gained amazing new friends.

We met Heather's family for the first time (although it felt like I already knew them) at the beginning of this month when we held a dinner party at our house, and then we went to her daughter's wedding reception a few weeks later where we were able to meet more extended family as well.  It was so wonderful, and her family is such a delight to be around.  We felt right at home with her family and everyone was so excited to meet us (well, Kai was really the star of the show, but you know...).  :-) 

Playing some video games...

The bride!  (Holding Jeremy above and "Just Married!" below).  Also in the picture below are HK, her brother and her mom.


The bride and groom in their first dance

Cute daddy-daughter moment.  Zuri ran up to J and gave him a big hug out of the blue.   I took many other pictures, but I didn't have my camera on the right setting and they came out blurry (it is really hard to get fast action captured in low light), so I am not going to post them, but Zuri had a blast on the dance floor that night with HK's other daughter, who took Zuri under her wing for the evening.

Also at the reception, we met up with another family that Heather had worked with, and it was really great to be able to meet that special little boy and to talk with his mom.  It is the first time that we have had an in-depth conversation face-to-face with another parent of a special needs child.

Our sweet little boy.  We are excited for the upcoming summer and more activities with such a wonderful family!

Not Alone

A few weeks ago I was contacted through email from a mother of a son who has Marshall-Smith Syndrome.  I was elated--finally, a connection with others!  She told me that she is part of a facebook page and there are 11 families represented in the group who live in the United States, and 28 worldwide.  She said that she found my page through the special needs spotlight on This Little Miggy Stayed Home.  More blessings from the spotlight!

I was invited to join the facebook page and now I am connected with the other families who have children with this syndrome.  It is so incredibly liberating to finally "meet" others who have been through some of what we have been through.  Although I haven't had much time to really get to know these families, I have been able to look through the pictures and posts.  It is amazing how similar the children look to one another!  They could all be siblings.  As with many syndromes, there are varying levels of severity.  There are some who are trached, some who are walking, some who aren't, but the overlapping sweetness of the children is all the same.  The other families have been so welcoming and willing to reach out to us.  The only way that I can describe it is as though they have become an extended family.  We have been united through a common bond with these special children.  There is just something about knowing that we are not alone that just helps to bolster our spirits and give us courage (and hope) for what lies ahead.

In Memory

Last Friday J's cousin, James, was killed in an avalanche while snowmobiling with family.  James was an experienced snowmobiler and was in an area in which he was familiar.  He had gone up ahead and when the rest of his party realized that they couldn't hear his snowmobile anymore, they went looking, only to find an avalanche area.  It took them several hours to finally find him buried under ten feet of snow. 

How incredibly tragic, and just a reminder that life is so precious.  James was like an older brother to J (he was two years older).  They grew up playing together--J was known as James' "caboose."  J will be writing his own thoughts in a later post.

Unfortunately, I was unable to attend the viewing and the funeral for James (J and Zuri were able to go), but my heart was there with the family as we say goodbye for now.

One of my favorite memories of James was when we met up with him in St. Louis, Missouri on our way home from Georgia.  James spent the summers installing security systems and we were able to have lunch with him before we arrived at my aunt and uncle's house.  James, who was always full of energy, was excited to see us, and we spent over an hour just talking and joking around.  It was one of those times when we didn't really do anything (except eat and talk), but the feeling of friendship and family was so strong.  

James always had a smile and a zest for life.  He was very involved with his kids and was always out playing with them.  He was a friend to all who knew him.  He will be greatly missed. 


Dancing in a skit at a family reunion

Doing what he loved: snowmobiling and jumps




There has been a fund set up for James' family.  If you would like to donate, you can do so here:
http://www.donationto.com/James-Childs-memorial-fund

Busy Busy

I thought that once we were all settled in to our home that things would quiet down for us a bit.  Wow, was I wrong!  We are even busier now than before!

As much as I had looked forward to Zuri going to preschool, I will be very glad when the school year is over.  Perhaps things will slow down when summer comes.  I don't know if I have mentioned it before, but I was nominated Zuri's preschool class president, which means that I oversee and conduct the monthly meetings (and prepare for them--getting the booklets put together and whatnot), make sure that things are running smoothly in the classroom, get class parties organized, help solve any questions that the parents may have, etc.  For the most part I have enjoyed getting to know the parents and being involved in Zuri's classroom, but sometimes it gets to be a lot!

When I explained to the OT why I had to push back an appointment because our parent meeting conflicted with Kai's appointment, the OT looked at me and said, "you are amazing!"  Ego booster!  Sometimes it is so nice to hear things like that.  I have become so accustomed to our new "normal" and how busy life is for us that I don't really stop to think about how much I really do these days.  I rely on my planner to keep track of everything--otherwise I would be in complete chaos!  Zuri has even picked up on it.  She has a little alphabet and number flip whiteboard notebook that she calls her checklist, and she has to check things off her checklist.  So funny. :-)

I have also been busy in the ward.  I have been called as the Activity Day leader for the 8 and 9 year old girls.  I have been having SO much fun doing that!  The girls are so full of energy!  I am excited to get to know them better, and for the upcoming summer so we can have some fun activities!

Appointments with Kai have leveled out.  We are averaging between two and three appointments a week, which is manageable.  Although, they want to add a vision specialist coming to the home soon, so it may change yet again.  Kai has hit a plateau in his progress.  We have seen little change over the last five months or so.  I am not discouraged; it takes time and I get that.  He is much more willing to take food orally, but he does the suckling motion of an infant, which means that more comes out of his mouth than stays in.  The OT has shown me how to aid him in swallowing, but that only gets marginally more in than before.  We take one day at a time, but considering where he was a year ago, we have made much progress indeed!

A Change

Every year or so I get an itch to make a change.  Last year I whacked my hair off to my shoulders.  It was cute, but I am a long-haired gal, and my hair grows much too fast to keep a cute short style (I don't have the money or the time to do it).  So, this year, I decided to do something that I haven't done in over seven years: I went dark.

Now I remember why I haven't done it in years.  I am trying to decide if I like it.  My eyes seem to pop more with the darker hair (although you can't really tell in the picture), but I am already mourning the loss of the blonde.  Maybe the dark will grow on me.  My hair turned out a good three shades darker (and more red) than I was intending.  I also had a couple inches taken off the length.

I don't have the best lighting in these pictures, so it is hard to really see the color as it is, but you get a general idea!  Hopefully I will have a better picture for you soon!