Eye and ear surgery went well...

We are now home from a two day time away, the first day Ezzy was given some Botox injections at the first hospital, 1.5 hrs. away, to help with his very tight muscle tone and then after he was awake and ready to travel, we were off to Children's Hospital for eye and ear surgery. He did well both days, but is now peacefully resting, glad to be home in his own, comfty bed! :) (mom and dad are glad to be home too!) His eyes were a lot more red and "worked on" than we expected, but he is recovering well. We are trying to keep it low key for him these next days at home....even among his younger brother's cries of injustice in their room, (nap time) he is sound asleep! :)

Our sweet little guy sure is a trooper and we are so blessed with such a caring medical team that provides Ezzy with what his little body needs.

Thank you to all of you that prayed for a safe trip and safe surgery for our little guy. We are blessed by you!

Here is another praise, Ezzy is now 20 pounds!!! That is huge ( no pun intended :) for him, he has had such a hard time gaining weight and now in the last three weeks gained 2 whole pounds! He has been on a continual 12 hour feeding schedule, hooked up to a feeding pump. He has been getting a higher calorie Pediasure in his feeding tube. Seems to be doing the trick...our next prayer request is that he will start eating by mouth again. We have been taking a break from feeding him by mouth because of a painful mouth sore that was taking weeks to heal up, now that it is, I really would like him to eat by mouth in addition to his feeding pump. Thanks for your prayers! I am so thankful he is "beefing up"...he actually feels heavier! Nana and our Pastor's wife, have noticed his weight change too, we are all excited, because of his belly being content (eating at a slower pace) he is overall more alert and at peace...praise God! :)

Ezzy and Daddy

On Saturday we went to a Farmer's Market to pick out some pumpkins. Ezzy and Daddy found a great looking pumpkin...when I told him that was his pumpkin, Ezzy smiled...can you see it?? He LOVES his daddy and we love these special memories of spending time together as a family!

a big boy ready for action!

feeling understood...

Two days ago we went for a Neurology appointment. Ezzy has them every six months, a check up, making sure he is getting as much assistance as possible. We really like his Doc and I always come prepared with a list of questions to ask and advice to learn. This last trip was a nice "get away" for Edwin and I. We had the two boys with us, and the girls were at Nana and Papa's, thanks! :) It is always nice to have the three hour drive there and back to chat and visit...I am so blessed that he works so hard preparing to be able to take the day with his family and that his job is flexible, allowing him to have time with his family.

As we were strolling through the hospital, I had a feeling overwhelm me, hard to explain, but I will try. While waiting in the waiting room, many parents and kiddos were patiently waiting to be seen. My hubby is always so friendly and chats it up with the kiddos that are near us. I smile and look at the moms. We kinda do a "glance" at each other's child and then kindly look back at each other, a "understood" smile is exchanged and I pray for the right words to come out of my mouth if our encounter leads to a vocal interaction. You see, even though no words have yet been said, we both have already "talked", an exchange of feelings understood and accepted. The Lord does bring about times when I am able to share the blessing of Ezzy's life, but sometimes it is only a smile exchanged. It is a good feeling to be understood and not feel like everyone is starring at your son. Being there kinda feels like you are part of a "club".

When I am there at Children's Hospital, I see a lot of sad things, often I see sick little kiddos being so lovingly cared for by mom and dad...and then poof, I am reminded of how blessed we are to have Ezzy, who does not suffer from being sickly, he is not dying, he is not on the verge of anything "bad" any more than a kiddo running down the sidewalk. Seeing these families puts my whole outlook on raising Ezzy into perspective. I am thankful for the reminder of how blessed we are.

On a note of update: Ezzy is doing wonderful, alert and responding to life all around him more and more! He is "smiling" more and I love to see him respond to his beloved family members. He is a tiny little guy and so we need to look into how we can "beef" him up :) I have a long list of calls to be making in order to set appointments up for him. I am thankful for the grace of God, His perfect strength that re-fuels my soul as I take it one day at a time...

Ezzy playing in his stander...

Swim time for Mommy and Ezzy

Summer heat brings on MUCH pool time at Nana and Papa's! We enjoy time together splashing around....Ezzy loves to be in the pool, in small doses! :)

Just Ducky...

Ez Man recently had a blast playing in his stander! We had some fun playing with duckies in water...he would push them in and love our response of encouragement!
He is so very cute and I just LOVE this guy!!!
We just returned from some annual check-ups. I have a list of phone calls to make in regards to setting up future surgeries and appointments. I love this job and consider it a privilege that I am Ezzy's mom. Someone recently joked that I need a bluetooth to make the calls on the road... :) NA! I think that it is so funny when someone is "talking to themselves"!!! Who knows, maybe one day!! HE HE...

Anyways, the updates are good as far as his back...the doc said that there is NO deformity in his back...so that is a PRAISE! We still need to keep a close eye on his spine though and continue to stretch him and "help" him keep it as straight as possible. He still has a "slump" in his back, but when we straighten him, he seems to enjoy the stretch, so we are thankful for that! :)
Our little guy will need eye muscle surgery and glasses! How CUTE will that be?!
So looking into the options for glasses is on my list...
He also will need new ear tubes...fluid is still hiding out behind his ears and so since one tube fell out, he needs a new pair. We plan to do both surgeries at the same time, sounds good to me! :)

I am so THANKFUL for the doctors that care for Ezra...as his mom and his voice, I still have to be determined. I am thankful for God's strength that gives me the wisdom to know what to ask for and yet how much to "go for" in his care.
I was recently talking with his therapists; they are so encouraging to me in raising and caring for Ezra. I am so blessed to have their input and advice and yet their concerned ear that listens to me.
GOD is good.

Working hard in his stander

Ezzy has been doing so well in his stander. Here I am stretching his arms, as his physical therapist is in our home helping us. We put on the tray for him to lean upon and he really enjoyed being able to take breaks and then straighten up again. His sisters were in and out of his room, and little brother was in his crib watching thearpy go on. His PT decided to do "ring around the rosies", so her and I and the girls all held Ezzy hands in a circle and did the famous song...falling down at the end of course :) At times Ezzy would scrunch down towards his tray! He too was falling down, it was so fun and the girls loved being part of his therapy time.

Melts my heart...

Thank you!

Thank you to those who watched Ez Man in his stander, for the encouragement and love you have sent across the miles to my little man! God is so good in blessing me with those of you who pray and cheer him on! :)

THANK YOU.

Ezzy has only used his stander that one time, due to the braces being a bit snug for him, leaving him with red marks due to the tightness of them. He has an appt. tomorrow and I will address this and hopefully have him fit for more braces, with that though, time will pass without the use of his stander. There is often hold ups in his overall care/therapy because of things like this, but I know God is in control and in His timing, will we start using his stander on a more daily based schedule. I will keep watching the video and be encouraged by his great response to feeling his legs in motion!!! :)

Thank you again....your comments and love is a blessing and sustains me!

I am blessed!

Brothers chilling together in Ezra's bed after bath time! Can you see the smile on Ezzy's face?! He LOVES interaction with his lil bro! :)

Ezzy, the Stander!

Ez Man is in his stander. This newest piece of equipment he has gotten gives him the feeling of standing upright. As you can see, he is still tilted at an angle until he gets a bit more comfortable with being completely upright. He kept pushing up with his legs when he felt himself slouching down! It was fun to see him respond and USE his legs! Praise God!

http://youtube.com/watch?v=O54ahfzZD80

Sweetly sleeping...

Ezra will often drift into a very deep sleep, a sleep that makes you smile, because he is at such peace. For those of you who have met Ezzy in person, know that he is often uptight and tense due to his very high muscle tone. So when he sleeps in such peaceful slumber, I enjoy watching him rest. The rest you see in this picture took place days ago after eating his dinner. The noise level was not at a low volume, actually there was commotion and life sounds taking place all around him, but yet, he was peaceful, content. Seeing him in such a state of contentment and peace made me realize that this pleasant peace is what God desires of our lives when we are trusting in HIM, when our mind is stayed on HIM, then we will have peace. He has told us that He has come into the world that we would have and enjoy peace; not only when things are going our way or life is quiet and "perfect", for there will never be a time apart for the craziness of life and the loudness of it all. So take a lesson from Ez man, who even in the noise surrounding him, opted to rest, to peacefully enjoy true God given REST; for God truly is the One who blesses him with the ability to rest....something that is not always easy for him to do...even more the opportunity to praise God and smile when his chest rhythmically moves to the rhythm of his peaceful rest.

"The Lord will give strength to His people; The Lord will bless His people with peace."

Psalm 29:11

Fit for a King :)

This past Monday, Ezra was "fit" for his new Stander. This piece of equipment will enable Ezzy to experience standing. As he uses his little legs, safely and snuggly in his Stander, he will begin to gain muscle in his legs, so that ONE day LORD willing Ezzy will walk! :)

After about 10 minutes of fitting his cute little body just right in all the straps and braces, the therapists and equipment guy lifted him upright. As you can see from the pics below, his eyes were bright and ready to take in life in his new position...STANDING! He was so marvelously ALERT and awake, it made me smile! I loved seeing him respond so wonderfully to his new equipment. I just received a message that his new feet braces that he will wear with his Stander are ready to be picked up. So soon, Ezzy will be "cruising"! This Stander IS on wheels that also has brakes, which is good with the hardwood floors we have within our home! Between Ezzy and Owen in his walker, a baby gate is a sure order for the stairway.

Our little Ez Man continues to teach us so much about God's perfect PLAN and POWER!

We PRAISE Him for the wonderful day of being "fit" for new equipment and for the genius inventors who have thought all these new contraptions up for kiddos like Ezzy. We are blessed and wanted to share a little about what is new in the life of our precious son...

Clippers, bubbles, and my sneakers...

My hair was getting really long, so Mommy and daddy thought it was a good time for a NEW haircut....so Daddy buzzed my hair off! I did really well, I sat very still for him.

Time for the a long awaited bubble bath.....it felt soooo good on my legs!!!

Howdy partner! Chilling in my Bumbo seat with my sneakers on...they feel kinda funny.


Here our my "boots" as Mommy calls them.
"These boots were made for walking"...well, not yet, but they will help my feet to keep growing straight so that one day, I CAN walk! :)
(keep praying for me, that I WILL walk one day!)


Hanging out with my Daddy, we were bouncing my new basketball.
I love my Daddy.

At the Docs with my Bro!

Here I am with Owen. I had just gotten my casts off and then re-casted in the clinic office. The whole time while wearing my casts, I would go every two weeks for clean new casts. This picture was from two weeks ago....now this week, on Thursday the 8th I will be going into the surgery room to have my casts come OFF FOR GOOD!!!!

I am very excited! I will come home with leg braces and instructions from my doctor to regain my strength. My therapists are looking forward to having my legs FREE and are ready to stretch and work my legs!

My family and I are going to be "hitting" the road right after my casts come off and I am all set with my leg braces. We are traveling to attend the memorial service of one of my mommy and daddy's friends. They told me my FIRST full-body bath (in 6 months) will be in a hotel bathtub! How fun will that be?! My sisters even want balloons and streamers for my "casts off celebration"!

I love you and will have mommy put new pics up to show off my FREE legs!

Love you,

EZZY

Casts coming OFF!!!

Yippee!!!

Hip Hip Hooray!

We are very excited to share with you that on March 8th, Ez Man will have his casts OFF!!!

He will then start wearing braces on his legs and it will be a long road of recovery and therapy, but we are THRILLED for this new journey ahead of us and will keep you posted once his little legs are breathing FRESH AIR!!! :)

LOVE ya, thanks for praying!

Baseball Birthday!

Of course, a RED SOX Baseball Party! Fun was had by all as we celebrated Ezzy's SECOND Birthday!!! Thank you Lord for the blessing of another year with sweet Ezzy. Mommy made the Baseball cakes and cupcakes for the guests. We all had fun.

I had a BIRTHDAY!

I had a birthday on Sunday. I am now TWO years old. I had a fun day on my birthday with my Nana and Papa, my Daddy, Mommy, sisters, brother, and Uncle Dave. I can't wait for my big boy BASEBALL birthday party on Friday with all my friends!

Thank you to all of you who pray for me and love me. I feel very loved!!!

LOVE,

Ezzy

Ezzy's Foot surgery

I updated about Ezzy's foot surgery on our family blog.

Check it out!