LOVE to Snowboard!

This weekend, while Aunt Kimmy watched Nicolas, Jake and I took the boys snowboarding!  Here are some pictures!  We had a great time!  Love you!

Here is a quick clip of G boarding!

They're Heart Breakers With Those Blue Eyes!

Will you be our valentine?

This morning we had some eggs and Krispy Kreme Valentines dougnuts...OK I didn't have any, but I tried to get mom to put one in the blender...she said no.  Moms!?!?  Garrett ate one for me...He is such a great big brother!  Then we opened our valentines!  Garrett got a new robe, candy, and Star Wars Legos.  Mommy, Daddy and Garrett got me two books and suckers.  I tried an orange one today...it was yummy!  We will be leaving shortly to go visit our Aunt Kimmy!  I love my family!

I love you too!

Nicolas

My 2nd Haircut!

Yesterday I got a new haircut...then I went and played with Camden and Mema while daddy and mommy went out for lunch!  Our Aunt Kimmy got us matching shirts...so mommy took lots of pictures...so many that I got tired!

Today I have a t-shirt that matches Garrett!  I'm sure mom will take more pictures!

I love you all!

Nicolas

Caught Nicolas Smiling!

He was so happy to have a full tummy!  I love my little man!

Baby Leman...

It's a girl!!!!!!!

Hand Splints...

For the most part Nicolas keeps his hands held in a fist.  When he is upset he clenches them very tight.  When he is relaxed we can stretch them open but you can feel the muscles are very tight.  So today Nicolas was fitted for hand splints.  We should get the splints in a couple days.  The gentleman who measured his hands was a joy to speak with.  He and his wife have a beautiful (as seen in her picture) 10 year old daughter who was diagnosed with a rare genetic disorder.  It was a very encouraging conversation....about expectations....about life with Nicolas....and about how truly precious these children are in our lives.  The way he mentioned God throughout our conversation reminded me how important HIS role is in our lives...God prepared us in such a special way and brought us together (all of us...not just Jake, Garrett, and I...but our family and friends and Doctors too) so that Nicolas would be loved and cared for.  This is something to be thankful for each and everyday!  Tonight (as every night) Nicolas and I will pray for the sick, the weak, and those in need...people we know...and those we don't...God bless us all...and continue to be with us night and day...and thank you for the opportunity to be reminded each and every day of Your love, Your presence, and for the many gifts You have given us.  You know what we need and You always provide!  Thank you LORD!

On another note....I'm picking Garrett up from school at 1:15 tomorrow.  Mema, Garrett, Nicolas, and I are going to South Bend for an Ultrasound...My sister (Kimra) is expecting their 3rd child and tomorrow we will find out if it is a boy or a girl!  I'll let you know tomorrow!  I'm so excited!!!!

Love to all!

Felisa

Lab Results...

Today Nicolas Had another immunization shot.  On Thursday he will get another and we will be caught up to 6 months.  We will wait 6 weeks and begin another series of shots that are typically given at 9 months.  Then wait another 6 weeks and  do it all over again...At that point we will be completely caught up!  So we are getting there!  Because the cause to Nicolas' difficulties is unclear they give him one shot at a time so that there are no complications with any grouping that could possibly make his symptoms worse.  He occasionally will get a slight fever from them...but on Thursday last week he got hives from one...one dose of Benadryl and it went away.  So he is doing pretty good! 

 

Last week we found out about all the recent blood work and a urine test...this was part of genetic testing...it came back negative!  Which is good.  The next step is the muscle biopsy...which we have been told will be done this Spring.  I made a call to Riley today to start setting that up.  I have not heard from them yet but I will let you know as soon as I can about when it will be scheduled.

Nicolas is getting so BIG!  He is officially into his new car seat!  We still have it rear facing...and will continue too until he is 36 pounds.  Developmental Pediatrics at Riley said Nicolas is in an appropriate car seat until then.  Once he is 36 lbs, if he is still not supporting his head and has no trunk control, we will order him a special car seat...one that insurance will cover.  Just making sure our little peanut is safe no matter where we go!

That is all I have today!

Take care!

Love,

Felisa