I FOUND MY LEGS

Hi Friends,

How the heck are you all doing?

Good I hope?

We are doing G-R-E-A-T at the Foster household.

I am still well (and have been this way since April.)


I have finally found my legs and I have started to bare a little bit of my own weight on them. 

I'm still very floppy, off balance and my neck is still pretty weak, but I can put my legs on the ground and with someone holding me up under my arms, I can put weight on my legs without totally buckling.  This is a BIG improvement for me.

My mom met some new friends with the Southern Utah Special Needs group here in our town and she is so excited to be able to share ideas with moms that have special needs children...

My brother and sister are out of school on summer break so I get to spend lots more time with them...

My brother knows me so well and he knows how to do everything with my tube..he's a good babysitter and I love to hang out with him. 

I'm grown 3 new teeth, and it's not so fun, but I am tough so I can handle it.

I love to go for walks, bike rides and shopping too.

As long as I am with my family, I am one happy boy!

Thank you to everyone who keeps on loving our family and showing daily support.

You are such a blessing to us and we love you very much.

Love,

Benjamin 

LIFE IS AMAZING!

LIFE IS AMAZING!!  (but I am sure I'm not telling you anything you don't know already, right?)

I have been TOTALLY "well" for over a month now and I love it (so does my family because I am in THE BEST MOOD when I feel good.)

I have some really "cool" teeth that are cutting in some "strange" places and I LOVE to BITE anything I can get into my mouth with...hands, fingers, toys, and even my dog's leg. (poor Sammie)  My doctor says I will need to go to see the dentist in the next few months so they can x-ray to see what is going on with my teeth.  You know me...I'm full of surprises.

We're working really hard at "sitting" up, but I'm still pretty floppy.  My head is really heavy, so some days I do better than others.

I still weigh about 18 pounds so I get pretty heavy after awhile because I don't offer my mom much help "supporting" my own body...not to mention that I still love to arch backwards and hang upside down like a bat.  I just like looking at the world from that view...it's familiar to me.  :) 

As for toys go, I love anything that lights up but my real joy is still with people.  I don't EVER want to be left by myself, so my mom has a "chair" or a "blanket" or a "swing" in every room of our house, so she can bring me with her and keep me happy as she does what she needs to do everyday.

I LOVE to go out on walks (at night when the sun goes down) and shopping too.  The lights in the store make me happy, but the "sunshine" makes me frustrated.  So when we do go out, I usually have a blanket over me it it's too bright.  (My mom is just THRILLED she has her freedom to go "out" with me, so she'll do whatever it takes to keep me happy.)

My legs are getting stronger because my dad can hold me up and with much support of course, I will bare my own weight for a few seconds before I collapse them. This is huge improvement because before I would never bare any weight on my legs at all.

I eat a bottle all day long and I eat by a tube at night.  

Slow but SURE progress...

As Samuel Smiles says:  "Progress, of the best kind, is comparatively slow.  Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step.

I think I would have liked Samuel Smiles...

Make it a beautiful day friends and I hope you know how much I love you.

Benjamin

17 MONTHS OLD

Hi friends...

Can you believe I am 17 months old already?

Whew!  It doesn't seem possible that this much time has flown by.

I am doing so well.

I weight about 18 pounds.

I am rolling over more and more everyday, and if I see something, I go get it.  It may take me awhile, grunting and breathing hard, but I roll my way over.

I do get "stuck" sometimes and I am finally loud enough that my family can hear if I cry.  It's WONDERFUL!!  (This is kind of funny because how many families do you know that are so happy to hear their baby cry loud?  My family LOVES it because that means that my vocal cords can make sound!)

I am 100% eating a bottle during the day, but am still being tube-fed at night.  My belly is still pretty small and  doesn't hold the amount of liquid I need on a daily basis, so I have to get the extra liquid and calories at night.

My parents want my g-tube out so badly because now that I am getting more active, I am also "leaking" more because the food gets pushed out of the g-tube hole, so they are changing my bandages more often than ever now.

I also know that this "tube" shouldn't be here because I pull at it every single chance I get.

I love people...I AM SO SOCIAL, and I still do not want to be left alone.

I am still pretty flopsy.  I can hold my head up for a little bit, but then I get tired and it's hard for me.  I am working really hard at sitting up, and as long as someone helps me, I can do it for a few seconds.

My special friends from The Learning Center come to see me.  I see a physical therapist, an occupational therapist, a vision lady and this month, I will start to see a speech therapist too.

My eyes are still having a hard time focusing in one direction at the same time, but we are working on it.  AND....they know I can see because I bat at everything.

The only noises I make are a growl, but if you say "hi Benjamin" to me, I will growl back at you.

I do however LAUGH outloud when my family tickles me or plays "peek-a-boo" with me.  It sounds like a "whisper" laugh, but it is a belly laugh indeed!

I have 6 teeth and they are coming "in" in very strange places.  My doctor isn't sure if this is a condition of my chromosome translocation or what, but I look like a little vampire...AND...I love to bite anything I can get my hands on.  He thinks we will be visiting the dentist to "see" what is in store.  As you know, I AM ALWAYS FULL OF SURPRISES.  (Truth be told, I like to keep these people on their toes and guessing about me.  Gives them something to do, right?)


I love walks and to go to the store.  My mommy is so grateful.  She feels like a free bird and loves it! 

My head is still pretty crooked, but the 2 helmets that I have just didn't work and I DIDN'T LIKE THEM NOT ONE LITTLE BIT.  My mommy finally decided that something had to go.  I was pulling at my g-tube and pulling at my helmet and crying non-stop, so she chose the helmet and now I am back to my happy self.

My daddy gave me a "buzz" hoping that my hair will grow in more quickly so that we can hide my flat spot.

My life is amazing.  My family says that I arrived to make them the people they were supposed to be all along and I love that.

Life is a precious thing my friends.  It's the small things that can sometimes make the biggest difference.

I love you all very much and I am truly grateful for your support.

Benjamin

OH MY GOODNESS

Oh my goodness friends....

It has been so long since my mommy updated you.

So, let me give you the 411 on what has been going on since my last update.

January was a pretty good month...my parents tried mixing all sorts of "flavors" into my nasty tasting Elecare formula, but I just didn't love their inventions.

But then....I discovered Chocolate Pediasure & folks...let's just say that my world changed. I couldn't get that food in fast enough.

I started eating this chocolate everyday and I was doing great!

I got to the point where I wasn't eating any food "in" my tube during the day...I was eating it all by mouth!!

The tube feedings were reserved for at night while I was sleeping.

I was holding my own bottle and loved this new situation. (so did my parents because they could take me somewhere and just bring a bottle....awww, the simple things, huh?

Well, somehow, I caught another cold during the first week of February.

I was pretty miserable.

I coughed so hard that my reflux returned with a vengeance.

I ended up aspirating into my lungs again & catching another bout of pneumonia.

If that wasn't enough, I then came down with "metapneumovirus" too. (this is like rsv's ugly cousin.)

I went to the Doc 7 times in 2 weeks & they just didn't know what to do with me.

At this point, I had totally stopped eating and so my parents had to put me back on the tube to keep me hydrated.

They prescribed 3 different antibiotics which did nothing but...give me severe diarrhea...like SEVERE diarrhea.

So severe that they found I now had c difficile colitis and I was getting dehydrated. I didn't know a person could go to the bathroom as much as I did (neither did my mom) and let's just say that the skin on my bottom was all off from this powerful stuff....it was pretty painful.


The month of February was a rough one but we are so thankful for my feeding tube because it kept me out of the hospital. They could feed me even as sick as I was and it was a huge blessing.


In March, I was feeling better, but I still was not 100%.

My parents slowly worked me back onto my chocolate drink & I loved it.

I had lost weight when I was so sick, so my already leaky g-tube was even more leaky because it was now too big. This was even more motivation to get me eating by mouth.

As I started to get stronger, I liked to sit up if someone was holding my hands. I like to bite everything in sight and I also cut 2 bottom teeth this month.

March was a way better month.

In April, I am still coughing.

I'm not sure why I can't kick this, but I'm trying really hard.

April has been a month of progress all the way around.

I am cutting 4....yes FOUR teeth at the same time. It hurts too! They are coming in like vampire teeth, but everyone says how cute I am.

I am rolling over now.

Sometimes I get stuck, but I like to move and shake when I can. The world is a whole big place & I've got to get moving.

I love to sit up.

I can't do it alone yet, but my core is definitely getting stronger.

I am a people person and I love to get attention.

I've gained a little weight back, and I almost weigh 18 pounds.

I am on a trip with my nana and mommy to Boston, Ma.

Whew! What a journey it has been.

Getting here was like a prank show.

We had to board the plane....wait 3 hours on the runway...de-board the plane...run...run...run to another concourse...get re-routed to another state...sit more time on the runway and finally make it to our destination 7 hours late.

I was a pretty good sport, but I had my moments (as you could imagine.)

We finally made it and I met my "east" coast family.

They are very nice and I'm getting slot of attention.

Yesterday, we took a big ferry boat to Martha's Vineyard and walked around the little town.

My mommy was in her dream land and didn't want to leave (she loves the ocean.)

It has been a really great trip so far and I am glad I was able to come.

My mom started to write this post when I was sleeping, but I'm awake now and I've just dumped chocolate pediasure in my Auntie's bed, so I'd better go for now.

Love you very much special friends...

DRINKING FORMULA!!!

TODAY WAS A GREAT DAY!!

Today I decided that I like to DRINK formula...through a bottle!!

Yes..I ate 5 feedings through a bottle and I did awesome!!

I am definitely on the road to getting this tube OUT of me ONCE AND FOR ALL...and it will be soon, very soon!!

It's pretty exciting stuff because this will change all our lives...Keep ya posted!!

Love you....

Benjamin

TODAY...I DID IT!!

13 months old and guess what???

I did it!!

I rolled from:  My back TO my stomach ...AND...then I rolled to my BACK again!!

I got a little stuck and my mom wanted to help me SO bad, but she refrained..My whole family was cheering me on and I finally did it...Today was a great day!!

Huge, HUGE, H-U-G-E accomplishment for me!

I'm moving forward...each and every day..we keep the faith and keep moving forward.

Love you!

PS:  I have 1 bottom tooth that has poked through and I have one more SO close to breaking through...I love to bite anything I can get ahold of.  It's so awesome!