I'm Three

I'm Three

Hebrews 11:1

"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1

Friday, May 27, 2011

DAY OF LIFE 174

Today is Friday and it has been over a week since my last update...

You know the old saying...NO NEWS IS GOOD NEWS?

Well, that is the case indeed!!  (AND....If the truth be told, my Nana went on "vacation," and my mommy and daddy were SO busy taking care of me and regular life that they didn't have time to do regular updates.  They have gotten so used to having Nana's help, but she will go home for good on 6/6/2011 - VERY SAD FOR US, BUT HAPPY FOR GRANDPA.)
I really am doing better everyday...I am having MORE good days than BAD days and this is a good thing...

It's a preemie step process, but I am working hard and I don't act like I am in as much pain as I have been in the past (haven't had any ibuprofen OR tylenol since my last post..YEA!!)

I still keep everyone pretty busy and I still have someone with me almost round the clock.  Some "nights" are better than others and I still do this strange sort of "thrashing" movement that no one knows about...

BUT..we are so so so so thankful...so thankful to be home and alive!!

I have found my hands...my mommy & daddy were so happy to see me put my hands in my mouth because before I was not having any "deliberate" hand movements...I would just look "up" and have my hands "down" by my side, so This is a HUGE step.....

My eyes are improving too...

My family still doesn't know "what" I see...

Some days they think I can't see very well based on my behavior, but other days, my eyes come "down" and I seem to "follow" things...(those days are very exciting!!)

In the past week, my surgeon's office visited me and they were SO impressed with my tube...My g-tube is totally healed...(mommy still changes the dressing out every day to keep it dry.)  They saw me swallow and suggested that my family give me "tastes" as I guess sometimes babies with a tube lose interest in eating by mouth..BUT..In the near future, they suggested that I get another "swallow" study done to see "where" stuff goes when I swallow.

This is new...My family is putting me "upright" on their shoulder sometimes and for a few seconds, I seem to be okay with it (which is a HUGE improvement because I have NEVER - EVER liked anything touching my belly - even before the feeding tube.)

Tummy time is still a challenge though...my neck muscles are very weak, but I am trying hard to lift my head...my family keeps working with me and my g-tube doesn't seem to be bothering me (although my parents NEVER put me directly on it..I am always propped up so the tube doesn't have pressure on it.

My breathing is still very noisy on some days and I sound like I am gasping for air...my "position" can change the noise or how "hard" I am working or "not" - so my favorite position is to be bent BACK as FAR as I can (and boy am I STRONG when I bend backwards - THOSE BENDING BACKWARDS MUSCLES ARE VERY DEVELOPED....my my parents' arms get a workout and the ONLY thing that gets me out of this STIFF position is my binky.  I love my binky!)   :)

My mommy had a developmental Doctor appointment today that she cancelled because she just couldn't bare to hear how "behind" I am..(not really sure if they would have "said" that to her or not, but many other people have said this. I have several people that visit me and they give my mommy good "tips," but their "assessments" say that I am NOT developed like other kids my age...I guess that what happens when a person spends a long time in the hospital...they get a little behind...)

BUT..again, we are looking at the WHOLE PICTURE and in the WHOLE PICTURE, I have come so far, and I will develop at my own "pace"...and as the title of this blog says:  BENWRITESHISOWNSTORY, right?

The pace is a little slower in Holland anyway and this is just fine!!

We are so grateful for where we are...Each day is a gift...a "present" indeed!!

Wednesday, May 18, 2011

DAY OF LIFE 165

Happy Wednesday!!

Today I experienced my very first shower..

Well...let's just say that I didn't "love" it - I guess for that matter, I didn't even "like" it...

But...everyone has to experience their first shower, right?

It was another fantastic day for me...

G-Tube looks the best it ever has...

Minimal reflux.

I love to be held and walked around the house...

I love interaction..

Now, my mommy has to get brave and get me on my tummy more...she will bite the bullet and go for it tomorrow...

We are feeling pretty good about life and our blessings...

I got a new cousin tonight and my parents went to see her at the hospital.  It brought back a lot of really fresh memories for my mommy and she tried not to tear up.

She is just so thankful that I am home and doing so well...

I think this experience has left quite the impression on her...

My sister is still feeling pretty icky, but we hope she will be better soon..

These cold germs need to get out of this house...

My brother is a genius...he is so smart in school and he got the lead part in the school play...

I am so proud of him!

Our family is feeling our "new" normal and it feels pretty good...

We have an awesome life and have been blessed beyond words...

DAY OF LIFE 164

Today is Tuesday...

My sister is home sick today with this darned cold and cough that I've been fighting.  My mommy is pumping the vitamin C into her by the load and making her drink water by the ton.

I still feel a little like I may have it, but it is not full blown like hers, and we are thankful!

I am doing so well..

My mommy made the comment today that I am just like the normal baby that she prayed for...

I can be awake without crying.

I am smiling.

I am starting to briefly "track" items with my eyes.

I have found that I have hands, but I'm not into putting them towards my mouth yet.

The only thing I want in my mouth is my binky.

My parents tried to feed me some really watered down rice cereal tonight, but I acted like I was choking and couldn't breathe, so we didn't get very far with that...(but daddy says "we'll keep trying.")

Overall, today was terrific!!

My family is so grateful...

Monday, May 16, 2011

DAY OF LIFE 163

Today is Monday and I had all of my monthly Visitors come today (OT & PT & Case Manager),,,

I didn't sleep very well again last night, but I am feeling better.

I performed so well for the OT.  She was so impressed with my abilities and she was so positive about my life and what it will look like.  My mommy REALLY appreciated her upbeat attitude and encouraging words about me.

I was so tired from all the playing, so unfortunately I fell asleep for the PT, but next time I will show her how strong I am getting..

I am doing so much better with my eyes...

They still go "up" some, but not as much as they were before...

I am looking at the world now and I kind of like it...(so does my family)

My cold is starting to go away, so today was a pretty good day!!

We'll take all the good days we can...feeling very grateful for each and every single one of them...

DAY OF LIFE 162

Happy Sunday..

It is a happy day because I am home with my family...

Unfortunately, I did not sleep again last night..I had a very hard time breathing because of this cold...

My parents had to suction me out a couple of times, but it didn't help...just made me mad & I cried and got even more "stuffy"...it's a pretty vicious cycle..

My airway is pretty small already, and a cold makes it harder to breathe...

This worries my parents, but I keep working through it...

Thank goodness for the nebulizer, tylenol & ibuprofen...

On another note...my reflux has almost stopped all together...

I can lay totally flat for long periods of time and I am not bothered by this at all...

My parents can play with my legs and I don't seem to "wretch" when there is pressure on my tummy..

Over all, I am making such great progress...

We are thankful for each little milestone...

DAY OF LIFE 161

Today is Saturday..

I didn't sleep at all last night and my mommy is very tired..

She is so thankful that Nana is still here to help out so she could get a couple hours of sleep because Daddy is super busy with work (which is great) but he was gone most of the day..

My sister is feeling better, but I am not..I have this darned cold..

BUT...Everyone else is staying well and we are glad about that!

Lots of rest today and I hope to feel better tomorrow..

DAY OF LIFE 160

Today is Friday...

There is still this darned cold around our house..

My sister has a pretty bad cough, and I am starting to pick it up too..

My parents aren't sure "why" - but I seem to catch things really easily, despite their efforts to keep me away from stuff..

Thank goodness Nana is still here so she can give my mommy and daddy a break..

We are going to be sad when she has to go home..maybe we can talk Grandpa into moving closer (ha ha)

I am pretty interested in my mobile, which is a huge improvement from my "typical" looking up pattern..

It's fun for my parents to see me "look" at something purposefully...

Making progress every single day..WE ARE SO BLESSED!!

DAY OF LIFE 159

Today is Thursday and I am a totally different baby than I was when I came home from the hospital.

I am loving being "awake" and "moving" around the house.

My belly is stretching and I am able to take more food at one time so my parents are letting the food build up in my murphy drip and then letting it drain into my tube at a faster rate.

They tried to feed me some apple sauce today on my binky, but I acted like I was choking, so they decided to back off of that for a few days.

One thing at a time...

Super grateful for my life!!

DAY OF LIFE 158

Happy Wednesday...

I am starting to feel better and it is obvious..

I slept a little better last night & I had a great day today..

I was in such a terrific mood all day long.

So thankful for days like today!!

Tuesday, May 10, 2011

DAY OF LIFE 157

Today is Tuesday...

Still feeling kind of rough...this cold makes me feel kind of crummy...

Strange weather for our part of the country today...rainy & cold..

The eye developmental lady came today and played with me..

She couldn't get me to focus on anything and she pulled out all of her tricks too...

I just like to look up alot and no one is quite sure what I am looking at...

She recommended taking me to a specialist, so my parents made an appointment for July...

Hopefully they will be able to tell them once & for all if there is anything going on that should be dealt with..

I am sure a mystery, but by now, that should be NO surprise, right?

I like to keep everyone on their toes and guessing too...

By doing this, I have actually gotten people to fall to their knees and I know the Lord likes hearing from them..

So I guess my "mystery" life is a blessing in disguise, huh?

Monday, May 9, 2011

DAY OF LIFE 156

Today was Monday and boy were we all tired from our "running" weekend activities..

It was hard to get out of bed for everyone...including Nana and she is always the first person up..

My cold is now full blown and I am coughing and feeling really crummy again...I cry a lot when I don't feel well..

We are not sure "how" I caught it AGAIN, but I did and now I'm paying for it..

My immune system is really weak & I catch things very easily...

Thank goodness that my mommy can stay home and rest with me today as she wasn't feeling 100% either...

Lots of Vitamin C and water is the remedy my mommy will try to "kick" it before it "blossoms" any further..

Nana is still here and we are so grateful...

Daddy had a busy day full of working and then going to his brother's birthday party...

Thank goodness we are all home now and we are off to bed early (my daddy will hang out with me until it's time to go to bed so everyone else can go first.)

What a nice daddy I have...

I am super blessed for sure!!!

Sunday, May 8, 2011

DAY OF LIFE 155

Oh Happy Day!!

Today is Sunday...MOTHER'S DAY!!

I still am having a slightly hard time sleeping, but I think it's because I am still not feeling 100% from the cold I caught...BUT, I am definitely on the upswing of things...

My mommy's family left to go home today, but Nana stayed here with us (thank goodness!)

It was so fun to see them and I know they love me very much...

Today, (as it is each and every day) was a day of reflection and thanksgiving..

The small things are such a blessing...I can breathe...I can smile...I can move my arms and legs...I can be held...I AM LOVED...

To be ALIVE is such a precious gift..

Keeping the faith...

DAY OF LIFE 154

Today is Saturday...

I got updated pictures taken today by my Auntie who is a talented photographer...

My mommy and Nana had a great time playing "dress up" withe me too..

I'm still feeling a touch of a cold...I've got a cough and my nose is stuffy..

This will be another day of running for my family..

My daddy is gone all day as he is the "photographer/supporter" for my Uncle who is doing the Ironman today.  My Uncle is a committed athlete...he's amazing!

My mommy worked at the model home for a few hours while I hung out with my family from out of town..they love me so much..

Mornings are still hard for me...I squirm a lot..

No one really knows why I am so squirmy...

Am I hungry?

Am I in pain?

It's hard to know..

I am still on a "continuous" feed, but my mommy has increased my amount a little per hour to see "how" I tolerate it and I am doing really good..

In fact, my daddy has been "experimenting" to see how "much" my belly can hold and he has been putting more in (bolus) my tube at one time..I seem to be doing fine so far...

I guess that my mommy is more conservative than my daddy is when it comes to "trying" new things with my food because my mommy likes to rock my boat very slowly...

My daddy wants me "off" of this continuous feed soon because he wants to take our family on a vacation this summer and it will be better if I can be "unhooked" from my pump for a little while..

Trying new things with me is how we will see "what" I can handle..

I am thankful to have people who love me and will "rock my boat" for me too.  :)

Moving forward - step by step - every single day...

Blessed beyond words...

DAY OF LIFE 153

Today is Friday..

I didn't sleep very well last night, so I am tired and so are my mommy and daddy...

It's a BIG day - full of "running" for my family...

My mommy went back to work today for a little while at my daddy & Uncle's model home.  My Nana watched me.  I love my Nana..she take such great care of me and we are all so glad she is still here with us.

My big brother's "actual" birthday was back in February, but because I was at the bigger hospital and my mommy was out of town with me for so long, my brother had to "postpone" his birthday party. 

So...we celebrated it today....

Since my parents are still pretty protective of me, I am not able to go, and my daddy will stay home with me while my mommy, Nana, Grandpa, Uncle, Auntie, cousins and all TWENTY-FIVE of my brother's friends have his party at the swimming pool.

Next year, I will be better and I can go too.

After the birthday party, my other Uncle (dad's brother) and Auntie came to watch me so my "whole" family could go to the Ironman Kids Fun Run because my sister and my cousin were running the 1 mile.

My family was glad to have the opportunity to be "together" to watch this event and they were thankful to have someone stay with me too!!

It was a good day..full of running from one place to the next...

What blessings we have!!!

Keeping the faith...

DAY OF LIFE 152

Today is Thursday...

I spent quite a bit of time with my Nana today..

I had my moments where I was hurting, and thank goodness for my binky because that is the one thing that will always help me feel better...

BUT...

I "overall" seem to be feeling better and better...

I was able to meet my cousins (my mom's brother's kids) for the first time tonight...they have only seen pictures of me because they were not allowed in the hospital..

They already love me and my Auntie does too..

I am so fortunate to have such a loving family who is happy to have me here...

Feeling so thankful!!

Wednesday, May 4, 2011

DAY OF LIFE 151

Today is Wednesday..

I had THE BEST DAY!!

I rested well and I was awake well too!!

It is totally obvious when I feel better and my family is feeling so happy!!

My brother is home today from school because of his eye, so he spent a lot of time with me.

What a terrific day!!

YEA!!!

DAY OF LIFE 150

Today is Tuesday...

It was a hard day..

I refluxed more today than I have in a few days & I cried a lot...

My cry is still pretty silent and I sound pretty sad...

I guess we all have hard days..

But..I'll take these "hard" days any day of the week..

My brother got sent home from school today because he got hit in the eye with a flying disc of sorts and his eye started to bleed..

The eye doctor said that the "structure" of his eye was not damaged...THANK GOODNESS!!

We are all very blessed!!

DAY OF LIFE 149

Today is Monday and the home health care nurse came to visit me..

I officially weigh: 9 pounds and 5 ounces!!

I am a big boy from the 3 pounds 14 ounces I once was..

My mommy is going to increase my food today and see how I do..

I am doing so good...super grateful!!

DAY OF LIFE 148

Today is Sunday..

It was "boys day in."

Zachary and my daddy spent time with me today so my mommy, sister and Nana went to church, hiking and to lunch too.

Reflux was at a minimum today and I am SO SO thankful!!

DAY OF LIFE 147

Today is Saturday..

It was a day full of spending time with my family...

I'm starting to feel better and reflux is minimal..

Feeling pretty grateful that life is so great!!