OH MY GOODNESS...Where has the past year and a half gone?

Here is what is going on it "Benjaminland" - Physically, Developmentally & Spiritually.

PHYSICALLY:

I am now THREE years old!  December 4th came and I had so much fun digging in my cake!  I have decided that I LOVE CAKE!

I weigh about 27 pounds and boy and I getting tall!   I've done pretty well over the past few months gaining my weight, but my mom is so giving, she keeps offering  "to cut" a few inches off her "reserves" for me.  Not sure how this would work, but I think it makes her feel better to offer it anyway.

I got a new adaptive stroller - and it is the cream of the crop!  I look pretty stylin' in my new ride (now if my parents can convince me of this because all I do is cry when they put me in.)

This new chair allows me to take the bus to and from my pre-school.  I stuggle getting on the bus, but my teachers tell my mom that I am okay once I am there.  (Of course she wonders.)

My teachers tell my mom that I have so much fun at school with song-time (even though I don't like the HB song) snack time (even though I am not eating anymore) and story time.  They are starting to work with me on an eye gazer and they want my parents to make one for me at home.  It is a way for me to learn how to communicate using my eyes.  It's a pretty cool concept and I do like doing it.

I am also working on PT and OT at school and my mom is trying to get me into new appointments this fall.  

Over the summer, I found my most favorite activity.....SWIMMING!  My mom found a neck ring from Water Way Babies and I love it!  It gives me so much freedom to move around.  My daddy says we will put a pool in our next house, just for me.

We are still working on my fine motor skills.  When I pick something  up, I still use my whole hand, so I make the GREATEST messes while I am eating.  My family loves it!  In fact, they love it so much that they installed a vacuum cleaner hose INSIDE the wall and they can pull it out at a moments notice to clean me up in a snap!  (((I love cords and hoses so much, I got a hold of the hose and gave myself my first HICKEY!  My mom was mortified, but I just think...you gotta start somewhere, right?

Eating has become a challenge again.  It's been like 5 steps forward and 10 steps back.  I am still "tube fed" at night, and now in the day I am tube fed too.  I gag on anything that gets put into my mouth and refuse to swallow.  I still like "tastes" but you can bet your bottom dollar that I will spit it out.  So....every 2 hours, I am tube fed and this is highly discouraging to my parents because they worked so hard at getting me to eat.

I had a tooth that turned "black" so they had to perform oral surgery on me and extract the tooth.  While they were in there, they had to do 2 root canals and cap all my front teeth.  My dentist says it is because of the formula that I drink.  Since I have a hard time swallowing, it takes me all day long to drink about 8 ounces of formula and this sitting on my teeth was rotting them.  They wanted my mom to go back to 90% tube feeding, but my mom just couldn't do this.  I have worked so hard to be able to eat through a bottle and to take that away seems like it would be going backwards.  But...eating this way is also causing a new problem because my teeth are rotting.  Sometimes my mom feels like it is a vicious cycle and she just has to do the best she can and trust the outcome will be just fine.

I'm getting pretty strong at being on my stomach.  I can even go pretty high on my forearms and my knee isn't far behind me.  It's so fun to hear my family say:  "up, up, up, up"....I go higher and higher when they encourage me.  I still like KISSING, but I have gotten kind of stingy with "who" I give kisses too.  They have to deserve it.  I still LOVE LOVE LOVE to PULL my mom's hair, scratch her face, pinch her arm and if it inflicts pain, I like to do it.   

My method of transportation is still ROLLING - - - and I AM FAST LIGHTENING!  I will eat paper, chew a shoe and get lost in the bathroom before anyone knows I've left the room.  

I still LOVE to arch backwards...that is my all time FAVORITE position.  BUT...I am liking more and more being up against my parents shoulder.  I still prefer to be forward because I always want to "see" what is going on.   

My neck is getting stronger.  I can sit for about 30 seconds with the criss/cross apple sauce position and then I tumble over.   I can also get into the "crawling" position and stay that way for at least 30-45 seconds before I face plant into the carpet.  But no one cares about that.  They are just so excited that I can hold that position.

My legs are also getting stronger.  For a few seconds, I can stand up against something if someone helps to balance me.

This "balancing" thing is still a tough one 

With occasional tylenol or ibuprofen, I am still OFF all medications!  Yeah!! 

HOW OLD IS YOUR BABY is still the family favorite?  This has become a fun "game" to my family.  When someone asks this question, my parents answer "well...how old do you think he is?"  Most people automatically say:  10 months.  My parents laugh and say "you're close.  He's three!"  It's always a great conversation starter!

I sleep pretty good every night too.  As long as I have my "ocean waves" going I am off in dream world.  My parents are so grateful for this!

Since I am such a loud breather, my mom had a hard time blocking me out so she could sleep (as I am in their room) so the ocean waves make all the difference for us all.

DEVELOPMENTALLY:

Everything still goes in my mouth.  (My dad has a strange habit of "smelling" everything and I have a strange habit of "eating" everything.)

I love to bite and I love to touch hair.  I love to touch faces.  I am soothed by "sensory" things.  In fact, my newest thing is to HIT MY OWN HEAD all of the time.  And, if you aren't careful, I'll take my head and hit it against yours.  I love this for some reason that my parents can't figure out.

I still love to "wave."  I love to clap and say "ma ma ma" and "tha tha tha" - my parents love this sound because it sounds like I am saying their name, but I really just use these words for pretty much everything since they are all I know.  

I still make a "growling" sound to laugh and if you make a sound to me, I will usually say it back to you.

I like to bang things around and we are working on placing blocks "in" and taking them "out."  I get a little distracted because I HAVE to eat them.

I am very happy 99.9% of the time.  I still don't like to be left alone and I am thankful that my mom and dad work from home so I can be with them all day long.  They've gotten pretty good at staggering their schedules so I rarely am not with them or my "babysitters" (Zachary & M'Kayla.)  Yes.  My brother and sister have really stepped up and learned everything they can about me and sometimes they will watch me if my mom or dad needs to run somewhere.  It works out great because I love to be around them and them and they love to KISS ME!

SPIRITUALLY

My parents still refer to me as their little angel baby.  You will often find me rolling back and forth on the floor - looking to the sky and talking to "someone"....laughing and kissing while I clap to them.  My family has no doubt that it is a special friend who has come to see me.  My family loves it!

They say that they look into my eyes and see a piece of heaven right here in their own home - I arrived to make them into the people that they were supposed to be.  My mom often reflects on how her life has never been the same since I arrived.  She used to "believe" that there are no accidents and now after living with me for three years, she "knows" - beyond a shadow of a doubt that this fact is true.  These past three years have been an amazing opportunity of growth for my whole family and we are truly blessed.

I love you so much my sweet friends and I thank you for your continued love and support.

Thank you for continuing on this amazing journey with me.

With All My Love, 

Benjamin

There Once Were THREE...Now There Are TWO!

Happy Monday Night Friends...

Hope this post finds you all well?

As for me, I must start out by telling you that it's been rough the last few days, but all is well again....I am back to my HAPPY HAPPY self!

I started to run a high fever again and I was a C-R-A-N-K-Y little boy for DAYS.  I've been so cranky that I've cried my voice away again, so I am back to the silent cry.  (This "silent cry" thing sure pulls at the heartstrings of my mom.)

Anyway..no one knew "what" was going on (but we think we figured it out.)

Here's the story...

On Saturday, my dad yells for my mom to "come see" me when I woke up.

Naturally she says "what's wrong?"

My dad said "don't you notice anything different about Benjamin?"

My mom immediately looked at my tube (thinking I had pulled it out again) and didn't see anything, but then just happened to look at my mouth and noticed that I ONLY HAVE TWO FRONT TEETH, but yesterday I had THREE!

Yep..you guessed it.  I broke another one of my teeth off right down to the nub - AGAIN!  My parents think this is why I have been so cranky...perhaps I've had a toothache?

It's all a guessing game anyway for them, but this is what they think.

My mom is going to have to take me back to my friend (the dentist) and have him tell her the same ole' stuff about my teeth rotting.

This is a bummer because I LOVE MY BOTTLE and I still have a hard time eating any food with texture.  My mom has tried to put water in my bottle, but I have a hard time with it because it is so thin.

Oh well...I just like to keep everyone on their toes and that is what I do best!

On to HAPPIER stuff...

You will be SO THRILLED to know that I am a master at the following:

1)  Clapping my hands
2)  Waving "hi"
3)  Blowing Kisses
4)  Giving high five

AND...I do all these things on "que" when they tell me to!

(((They are having so much fun telling me to "kiss mama" - "say hi" - "clap, clap, clap"...you should see this circus that goes on.  I'm pretty much the entertainment for my family.)))

PLUS...I love to sit on my little car.  I'm pretty wobbly, but if someone sits with me, I love to hot-rod back and forth on the floor.

Anyway friends, I am off to dreamland (hoping that I don't lose anymore teeth in the middle of the night (ha ha)...(my mom hopes this too!  I only have TWO left in front and she kinda likes them there.)

TTFN!

WHERE DOES 7 MONTHS GO?

Oh My Goodness Friends!

Where does 7 months go?

It's been nagging at my mom for awhile now that she needs to get on here and tell you all how I am doing, but it took running into a friend at Home Depot tonight for her to TAKE THE TIME to sit down and write this update.  (She wants me to tell you that she is SINCERELY sorry that she hasn't been more diligent at this.)

So...here is what is going on it "Benjaminland" - Physically, Developmentally & Spiritually.

PHYSICALLY:

I am now TWO years old!  December 4th came and I had so much fun digging in my cake!  I have decided that I LOVE CAKE!

I weigh about 21 pounds.  I have gone up to as much as 22 pounds, but I have gotten sick a few times during the last few months and I just seem lose weight and then it's hard for me to regain it again.  (My mom often offers to "cut" a few inches off her "reserves" for me.  She's so kind, isn't she?)

I am getting very TALL.  I grew so long that my parents had to get me a new car seat.  The infant car seat I was in wasn't safe anymore because I am longer now, so I have a new seat and I really like it.  I can sit more "upright" - but when I get tired, then the seat is able to support me without completely laying down.  My mom wants to "invent" a stroller that the seat can clip into though because my new car seat "stays" in the car but since I can't sit-up on my own yet, it's hard for my mom to go shopping with me because she has to "hold" me in the store while she shops because I can't "sit" in the cart.  Another challenge is when we go out to dinner, they have to hold me on their lap since my car seat isn't one that "travels" around like my infant seat and all of the high chairs don't have any "support" in the back.  I would just FLOP over and KONK my head.  

Overall it was a great move for me, even though it has presented a few "new" challenges for my family - but they are happy because I am happy when riding in the car now.

We are working on my fine motor skills.  When I pick something  up, I still use my whole hand, so I make the GREATEST messes while I am eating.  My family loves it!

Speaking of eating..here is the schedule.  I am still "tube fed" at night, but in the day, I drink Pedisure through my bottle.  I also eat baby food and anything else my parents can moosh up for me.  It has to be the right consistency or else I gag and have a hard time getting it "down the hatch."   

I had a tooth that turned "black" so they had to perform oral surgery on me and extract the tooth.  While they were in there, they had to do 2 root canals and cap all my front teeth.  My dentist says it is because of the formula that I drink.  Since I have a hard time swallowing, it takes me all day long to drink about 8 ounces of formula and this sitting on my teeth was rotting them.  They wanted my mom to go back to 90% tube feeding, but my mom just couldn't do this.  I have worked so hard to be able to eat through a bottle and to take that away seems like it would be going backwards.  But...eating this way is also causing a new problem because my teeth are rotting.  Sometimes my mom feels like it is a vicious cycle and she just has to do the best she can and trust the outcome will be just fine.

I LOVE to be on my stomach and for those of you who know me, know that this is a HUGE change.  I have a large mirror on the floor that is against the wall and I can watch myself in the mirror  for a very long time.  The newest thing I have learned is how to make the "kissing" sound.  I love to sit and "kiss" the person in the mirror (myself.)  Someone will make that sound at me and then I will make it back and I love it because then I get kissed.  (Kissing is one of my very most favorite things to do - besides touching (more like PULLING) my mom's hair.  If I get upset, this is what will calm me down.  I love hair.  I love to put hair on my face.  I love to suck hair.  I love to massage hair too.  I try to touch my sister's hair, but she doesn't like it very much.  Neither does my doggie, Sam.  What's wrong with this picture? I'm not sure "why" they don't like me pulling their hair????....)

I am using my arms more and pushing myself "up" while I am on my stomach.  This is a HUGE improvement too!  I also will get one knee kind of bent, so it looks like I want to "crawl" but I have found the I can "scoot" and that is easier.  My most favorite exercise is ROLLING.  I roll everywhere and nothing is off limits.  My mom turns around for a minute and I am into everything.  It's great!

I still LOVE to arch backwards...that is my all time FAVORITE position.  BUT...I am liking more and more being up against my parents shoulder.  I still prefer to be forward because I always want to "see" what is going on.   

My neck is getting stronger.  I still cannot sit unless someone is helping me, but I am definitely stronger than I was in my last update.  

My legs are also getting stronger.  For a few seconds, I can stand up against something if someone helps to balance me.

Sheesh...This "balancing" thing is a tough one....WHO knew?

With occasional tylenol or ibuprofen, I am still OFF all medications!  Yeah!! 

HOW OLD IS YOUR BABY?  This has become a fun "game" to my family.  When someone asks this question, my parents answer "well...how old do you think he is?"  Most people automatically say:  8 months.  My parents laugh and say "you're close.  He's two!"  It's always a great conversation starter!

I sleep pretty good every night too.  As long as I have my "ocean waves" going I am off in dream world.  My parents are so grateful for this!

Since I am such a loud breather, my mom had a hard time blocking me out so she could sleep (as I am in their room) so the ocean waves make all the difference for us all.

DEVELOPMENTALLY:

Everything still goes in my mouth.  (My dad has a strange habit of "smelling" everything and I have a strange habit of "eating" everything.)

I love to bite and I love to touch hair.  I love to touch faces.  I am soothed by "sensory" things.

I have just learned how to "wave."  It takes me a little while to get my hand "up" and then move my wrist "back" and "forth," but I can do it.  (You should hear my parents when I do.  They love it!)

I still make a "growling" sound to communicate, but I have added a new sound to my vocabulary:  ahh.  

If you say it to me, I will say it back to you.

I like to bang things around and we are working on placing blocks "in" and taking them "out."  I get a little distracted because I HAVE to eat them.

I have several kind people from The Learning Center that come over to see me.  My mom loves it because I am much more interactive with them then I have ever been.  One of the ladies did tell my mom that they could only come to my house until I was 3 years old and then after that I would need to come "into" their location for continued services.  The woman said that they could send a "bus" for me.  My mom didn't know whether to laugh or cry at the thought of sending ME on a bus since I still look like an 8 month old BABY!  She couldn't imagine herself standing at the curb and "waving" goodbye to her me as I go off to kindermusic.  Thank goodness she doesn't have to worry about this for another year.

I am very happy 99.9% of the time.  I still don't like to be left alone and I am thankful that my mom and dad work from home so I can be with them all day long.  They've gotten pretty good at staggering their schedules so I rarely am not with them or my "babysitters" (Zachary & M'Kayla.)  Yes.  My brother and sister have really stepped up and learned everything they can about me and sometimes they will watch me if my mom or dad needs to run somewhere.  It works out great because I love to be around them and them and they love to KISS ME!

SPIRITUALLY

My parents still refer to me as their little angel baby.  

They say that they look into my eyes and see a piece of heaven right here in their own home - I arrived to make them into the people that they were supposed to be.  My mom often reflects on how her life has never been the same since I arrived.  She used to "believe" that there are no accidents and now after living with me for two years, she "knows" - beyond a shadow of a doubt that this fact is true.  These past two years have been an amazing opportunity of growth for my whole family and we are truly blessed.

I love you so much my sweet friends and I thank you for your continued love and support.

Thank you for continuing on this amazing journey with me.

With All My Love, 

Benjamin

a.k.a.:  BB; Biebers; The B-Man; Biebster; Benj
(My family has all kinds of names for me)

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!

YAHOOO!! I AM 1 YEAR OLD!!!

(In case you are wondering...yes..I scratched my face up...I like to scratch and pinch and I will do it to anything I can get ahold of...even my own face.)

Well...I guess you must have guessed by the title that....I had a birthday!

And what a birthday it was...a HUGE milestone for our family indeed!!

My family took me to see my very first movie "at the theatre."  

I was in a trance watching Arthur's Christmas and did well until the very end...then I just needed to be done.

My family bought me a cake, but of course I couldn't eat it yet...so they gave me plain "whip cream" so I could attempt to feed myself.

I didn't really like it much...but that's okay, it was the thought that counts, right?

Is today REALLY the 21st of December?

My mom wants to know WHERE the month of December went to?  (She actually wants to know WHERE the days have gone since October 25th...the launch of the "In A Pikle" bag.)

She has been on the "road"...she has been on TV...she has been shipping...she has been packing...she has been unpacking...let's just say...she has been busy.  She feels so blessed and excited too!  Between this, ME, ZACHARY and M'KAYLA (and dad of course) the days have flown by!

As for me....

Let's see...

First and foremost...I am a very HAPPY baby....

If....I am being held OR someone is paying attention to me.

What do you expect from a baby who has had "round the clock, full time care since he was born, right?)

My parents joke that when they are "watching" me, this is their job because they have to wait to get anything else done until someone relieves them.   :)

Of course...I am always keeping everyone on their toes...this is just how I roll.

I love Zachary and "Kay Kay"...I know them..I know their voices and I love them very much!

Hmmmmm...

The last time I wrote, I had my new helmet...

Well....

I now am the PROUD owner of TWO helmets...neither of which fit me.

My parents have taken me back numerous times to be fitted and refitted and refitted, but each time I find a way to wiggle it to where it cuts into my ear, nose, eye, forehead...well you get the idea (and then of course I am not happy.)

To be honest...I am not sure "what" the plan for the helmet is...

I am still not sitting by myself....but my head is getting stronger...

I am spending more and more time on my belly...I actually don't mind too much if someone hangs out with me...

I LOVE TO CHEW on anything I can get my hands on...and I drool alot too...my parents wake up everyday just waiting for my first tooth...


I weigh about 18 pounds and I am getting LONG...I've outgrown all my "jammies" and until just recently (since it just got cold here in the desert,) my resourceful mom cut the "feet" off my summer jammies so I could still wear them since my legs are so long...

I'm going to take after my dad and be tall....

I'm almost too tall for my bathtub, but my parents have found that my hands are hard to control and I WANT THIS G-TUBE OUT!!

So, if they give me a regular bath or shower (not in my tub) - it's hard for them to make sure it stays in...I'm LIGHTNING FAST!!

They have to keep it covered at all times, or I work really hard at removing it.

Speaking of G-TUBES...

I just know that I will get my wish SOONER rather than later...because....

I AM EATING BABY FOOD FROM A BOTTLE.

It can't be too runny and it can't be too thick...it has to be just right (just like baby bear's porridge.)

But I "suck"....I "swallow"...I "breathe"...AND I LIKE THE BOTTLE...

In fact...

DRUMROLL PLEASE...

I hold the bottle myself and feed myself!!

YES...I do!!

My parents almost broke into tears when they saw me do this for the first time!!  It was a momentous day!!


I am still being fed my formula through my tube, but we are all working hard to get me off this...

My voice is still quiet, BUT...it is getting louder...we pray that over time my voice will be louder.  They have suggested that my parents take me in to have them do some more tests on my vocal cords, but they are opting against this (of course they are.  :)

If I am really mad, my parents can hear me from my crib...

I still make "growling" sounds....this is about the only sound I will make, but I make a "game" out of it...

I will "growl" and then they "growl" back and me...I love it and I just beam with smiles.  My smile can light up a room...

My left eye is still leaky, but it is getting "less leaky."

They told my mom to bring me back after I was a year old so they could "stint" it open to help that leaky tear duct, but it's getting "less leaky" so my mom would rather let "good old fashioned time" do it's job.

BUT...guess what?

I "rarely" reflux anymore....like hardly ever!!

IF...my parents don't ever let my stomach get empty.  So, I am on a continuous food drip all night and when I wake up, I feel great!

(They learned this by trial and error when they they stopped feeding me at night for a little while and when they fed me after my stomach was empty all night, I refluxed and refluxed and refluxed.  (Well...you get the idea.)

So...noctural continuous feed is what we shall do...for now at least.

It is so awesome to keep that stomach stuff "where" it belongs...IN MY STOMACH!

I am off ALL  my medicines and it feels great!!

My mom still doesn't take me out "too much"....but she has ventured out when she has someone to help her.  I love to look at the lights in the stores. 

At this moment, I have a slight cough, but overall....I am well.

The cold I caught from my "mom's travels" lasted a LONG time...I had to go through 2 rounds of antibiotic and it STILL stuck around (in fact, the cough is still here)...***I've got to figure out a way to get my immune system stronger....(my daddy who knows all about health stuff is working on this.)
 
We are headed on another trip and we are so excited to go to Moab for Christmas, (so please PRAY I STAY WELL!!)


(My mom wishes that she had words in her vocabulary that could express how thankful we are for you.)

Merry Christmas!!

Much Love....

A ONE YEAR OLD BENJAMIN

I'M 11 MONTHS OLD TODAY

Wow!!

How time flies...

It's been awhile since I posted and you know what they say....NO NEWS IS GOOD NEWS.

This is right on the money...

In 11 months, I've made HUGE progress...

My mom was a little off on my weight on my last post, because I "now" weigh 16 pounds...

In the past few weeks, I have started to really "like" when my parents hold me upright on their shoulder and I'm doing pretty good too...This is exciting for them because I am really working hard on my head control.  When I get tired, I just throw myself backwards (my back muscles are very strong) as hard as I can and this way they KNOW I am "done" with this position.

I still cannot sit without some help, BUT....I can now "roll" from side to side and I kick my arms and legs like crazy when I get excited.

I am still "batting" things around that are right above me and I LOVE TO BRING THINGS TO MY MOUTH AND CHEW ON THEM.  YEA!!!

I am still being tube fed for the most part, and I really don't like "liquid" in the bottle.

BUT....if they put SWEET POTATOES in there, I try even harder to eat the bottle.  (They have to cut the hole in the nipple bigger so I can get to the food, but this works for me sometimes.)

I do pretty good just eating off the spoon too.  I've adapted in my own "Benjamin" way to my high palate....I will take a bite and then put my LEFT finger in my mouth and "suck" my food down.  I use my finger to help me get the food "down" the hatch. 

My brother, sister and I went "on the road" with my mom for her new business venture (www.inapikle.com)  and BOY OH BOY, was a sight to see with all my equipment.  I have a lot of stuff that comes with me and it was an "adventure" for us to "make-shift" all my medical supplies.  My mom just kept saying how "crazy" she was to try and do all this, BUT...she did it and we all survived just fine.

However, I ended catching ANOTHER cold, and so I am trying really hard to get over it.  I'm coughing pretty good and I just don't feel like my happy self right now, but I'm working hard to get over it.

My family has come to realize that I catch things REALLY easily and I am not really good at "travel" right now, so THANK GOODNESS my Nana could visit us and help out since my mom has been so busy.   ***Her project is actually a "family" project for sure!!**

The decision was finally made and I now have a very "hip" helmet.

I don't like it, but my head wasn't getting any better, so my parents figured they had better try to help straighten it out.

I look pretty cool if I do say so myself!!

I sleep all the way through the night and my parents LOVE IT!!!

One of the medical professionals who work with me came by to visit.  She showed my parents a paper from when I was 4 months old.  My parents read back through the paper and were re-reminded about the HUGE HUGE HUGE progress I have made over these months.

My "daily" progress may be in "preemie" steps, but my "overall" progress is really LEAPS AND BOUNDS.

We remain so grateful for all the love and support that we continue to get from all of you...

We love you!!!

WHERE DOES TIME GO?

Hi friends!!

Wow!!  What a month we've had since our last post..

My mom has been crazy busy with helping my dad/Real Estate and working on her project (www.inapikle.com) and OF COURSE..taking care of me!!

I weigh a little over 16 pounds...and I am getting long..

I am still eating by my g-tube, and some days I will eat from the bottle and some days I won't.  I still like sweet potato's and my family gives me all sorts of tastes of other things too..

Since my mom replaced my button, my new one has been keeping her busy because it leaks...instead of cleaning and changing the tape "once" a day, she does it multiple times a day some days...

My belly doesn't smell very good, but she tries to keep it as clean as she can...

The old button was too small, but she thinks this new button may be just a smidge too big...I just need to gain more weight and then it will fit perfectly and quit leaking...

I know that there is something in my stomach and I want it OUT!  I pull on it and I have FAST hands...if my mom doesn't have it taped down really good, I get ahold of it and pull hard...there have been a couple of really close calls of me de-tubing myself.

I'm still pretty floppy..Some days I will hold my head up strong and some days I'm just tired...

BUT...I still love to arch as far backwards as I can and I am strong with that...

I prefer the right side of my head and wiggle my way back into my "preferred" position as often as I can get away with it...

My head is getting crooked, so before my soft spot closes, they want to put a helmet on me...we'll see what's going to happen...

As for developmental...I am focusing more on items placed above me...I do use my hands to "bat" it around and sometimes I will try to put things in my mouth IF they are "close" to my mouth already...

Cause and Effect are not concepts I understand just yet..

My parents do wonder "where" I go sometimes because I just seem to be in my own world...I will look "up" or "off" into the distance and my hands remain down, my back remains arched and my head to the right....it's a pretty interesting sight for them...BUT...if only they could read my mind OR I could talk, right?   Oh the stories I would tell them...

I still make little growling sounds for my laugh and my voice is about the same..still pretty quiet...

I've been hanging out with my cousin Sophie who is a few months younger than I am and I just like to have her laying by me...this way I know I am not alone...

OR...

I want to be picked up and carried around the house with my family...

I had a couple of episodes where I have thrown up (which really freaked my parents out because I had the Nissen surgery and I am supposed to have a very hard time throwing up) - - - but...it's probably a good thing that I "can"....because this means that I "can" throw up if I need to...

My reflux isn't as it once was...some days I will go without refluxing at all...some days, I have a few episodes, but my Prevacid helps me...

I've had a cold in my chest for over 2 weeks now and my cough sounds like I'm barking...My mom knows I don't feel well because each time I cough, I cry...I haven't felt much like eating either...maybe this is why I don't want the bottle...I'm not sure "why" I'm not kicking it, but I guess that it's just taking me some time to get over it....I've been extra cranky at times..

BUT...when I do feel good, I love to smile and to be played with...I know my family very well and I know if they aren't around...I do NOT like to be left alone...ever..

My mom still is at home with me and she's REALLY liking it..

It's taken her a few months to get used to not working outside the home, but she is so thankful she can be with me...Some weeks, she doesn't leave the house...but she's okay with that...

My brother and sister are getting used to having her home too...I guess I was a blessing in disguise for them too....

My mom stays positive and happy because we have the best family and friends who continue to call, email, text, send cards, gifts and encouragement.

Thank you to all of you...

I know that I'm not an easy baby to take care of sometimes, (but I'm worth it)...the right person always shows their love at just the right time to us...

We are so grateful and blessed....

NEW MIC KEY BUTTON DAY

Hello Friends!

So much great news, I hardly know where to start!!

I am sucking on a bottle now without doing a "choking" sound/behavior 

It is only a few drops at a time, but that's okay because that is way MORE than I was doing.

We keep trying the bigger nipple (thankful for my mommy's friend who told her about the bigger nipple) and   pactice with it seems to be helping me and making it easier because I am doing what I wasn't a couple of weeks ago...

I am still eating sweet potatos and loving them.  They've tried some other things with me, but I keep coming back to banana's and sweet potatos.

My family was noticing a really bad smell coming from my belly (like a REALLY BAD SMELL) and my mic key button was really tight to my stomach. (sort of like if you had a tight pair of pants on and the button was squooshing into your belly..that's what it's like.)

My mommy called the hospital that originally put it in and they told her that I had probably outgrown it and would need a bigger size.

So...today was the day...the piece that my family tries so hard to "keep in" my belly came out and a new one was put in.

It was a snap!!

My daddy helped my mommy, but he got really sick to his stomach.

I don't know if it is the NASTY, NASTY smell coming from me or it was seeing a hole in my tummy that made him feel light headed, but either way, it's probably good he's not in the medical field.

My mommy wishes she didn't have to put it back in at all, but "I" think this will be the "first AND the last" time she will have to do this because as soon as I can sustain my growth with food/bottle, we can kick this feeding tube out of our house for good.  :)

That will be an exciting day for SURE!!

But..until then, we remain SO grateful that there is a way I can eat and we are thankful for our blessings!!

Love you all!!

LIVIN' THE GOOD LIFE!!

FOOD IS SO WONDERFUL!!

Boy..I have been missing out these past few months - eating Elecare formula through my tube.

I can't get enough sweet potatos and I like banana's too!!

I've figured out a way to "suck" my finger to get the food to go down, so it's pretty "messy" but we don't care because I am "doing it!"

My pump stopped working yesterday, so they brought me another one...those people "on weekend call" are so great to come right over and replace it.  THANK YOU!!

We are working towards getting me "off" of the pump all together - but my parents have to figure out a way to give me liquids becuase the "bottle" - even with the new nipple, isn't working. 

We tried a sippee cup and sometimes I do okay with it and sometimes I don't.

I've decided that my tube is annoying to me and I "like" to pull on it, so my mom has to make sure I can't get at it. 

My muscles are still pretty wobbly.  I can't sit up without being assisted and I don't like tummy time...but..I am at times, "rolling" back and forth from side to side.

I will let my mom put me "up" on her shoulder for a little longer each day, but she has to be careful because I am a "head-heavy" and I don't have much neck control, so I can be dangerous to anyone holding me like that.

The physical therapist came over and said that my head is still pretty crooked, but that it is "growing" at a healthy rate and that is great!!  Head growth = brain growth!!

I love to be "back" in the arched position as much as I can and I still look "up" to the sky quite a bit, BUT.... I have a smile that can make anyone melt..

So even though I may not be looking at you directly, if you talk to me, I will smile so BIG and I may even give  you a "a-a-a-h-h-h-" kind of "growl" (that's how I laugh and talk.)  My voice is still pretty soft and my breathing is striderous on some days, but on some days you can barely hear me breathe.

It all depends on my reflux.

Some days are better than others.  If reflux comes up, my voice and breathing are affected.  But, I've learned how to "manage" my reflux because I will swallow it back down.

My mom received a letter from the State of Utah stating that she is not abiding by the law.  Apparently, in the State of Utah, it is a law that each child get their hearing tested and that the results be reported.

I've attempted to have my hearing tested 3x and have only passed off one ear. 

They have tried the other ear, but it hurts me when they put the "tester" in and then my ear is red and sensitive for the next few days after.

We don't know why, but I was born with really tiny "holes" (nose, airway and ears.)  Since my ear hole are so tiny, I just can't sit still or stop crying while they put the tester in and in order to get an "accurate" reading, I have to sit "still" and be "quiet" while they do the test...

They have suggested "sedating" me so they can get it done.

BUT...

My mom wasn't okay with this and decided to "wait" to take me back until my ear holes grew a little bigger. She was thinking that once they grow some, the tester may make me irritated, but won't make me "cry" for pain.  (Mom's know their kids "cry" - whether it is a "pain" cry or "I'm just mad at you.")  

She is with me every day and knows that I can hear really well based on how I react to sounds, voices and being left alone.  (I don't like to be left alone at all.)

Well..the State of Utah is not okay with this "mom" decision and has sent her a letter telling her that she needs to get this done "WITHOUT DELAY."  "Utah State Law requires this testing...... ....Results must be reported for babies born in Utah as required by Administrative Rule 398.2."

I don't think my mom likes being told what to do when it comes to me.  She has seen me go through too much pain and she knows me better than anyone else.  She knows I can hear and that this test hurts me and she is not on board with them "sedating" me again just to have a "result" to report to the State.

I guess we'll see where this goes, but I heard the "mama bear" in her come out when she received this letter to "comply."

She and my dad just wants what is best for me. Period.

WORKING ON THE BOTTLE

A BIG HUGE THANKS to my mommy's friend Emily who told us about a new nipple.  It's longer and fatter and since I'm having so many problems with the bottle..totally worth a try!!

Thanks Emily!!

Appreciate you thinking of us and sharing the information.

DADDY TIME!!

Well...my mommy took a break from me for the first time..

She, my brother and sister all went to Las Vegas for the weekend..

They needed to have some "one on one" time with her..I'm pretty time consuming..

SO...that meant daddy and I got to hang out for 2 1/2 days straight!!

My daddy is a good, patient man and even when he is sleep deprived, he never gets frustrated..

He just "napped" when I "napped" and "woke up" when I "woke up."  (I do have to say that he was pretty tired when mommy got home and he was thankful to be back on the "schedule" again.)

Mommy missed me, but she did great!!  Since she gets so cranky when she doesn't get sleep, we ALL think it's good for her to get a FULL night's sleep once in awhile (and she thinks so too!!)

What blessings we have!!

I LOVE SWEET POTATO'S!!

Well...the verdict is in...I LOVE SWEET POTATO'S.

My Grandpa & Nana came for a visit and I was so happy to see them.

Anyone who knows my Grandpa, knows that he LOVES feeding people..food makes him a happy camper and he wants everyone to be as happy as he is!! 

Well...he decided that he needed to "feed" me too, so when my mommy and daddy were out, he gave me sweet potato's and I LOVE THEM!!

He had to work with me because I kept pushing them back "out" with my tongue and then I haven't perfected my swallowing yet...it is still a challenge for me, but I really like the taste of those sweet potato's..

It took me four days to finish off 1 small container/jar of Gerber Sweet Potato's, but I did it!!

Another milestone for me..

Onward and upward..

FIRST ROAD TRIP....I didn't like it

I am starting to get visitors and I really like it!!  (Thank goodness my mom is loosening up a bit and letting people come see me.)  I was able to see my awesome Grandma and my daddy's sister & family.

Also, a few days ago, my other auntie and cousins came for a visit and I fell in love with them...especially my auntie..(she has dark hair and eyes and I really like just looking at her..I guess you could say that we're pretty "bonded" and I like to "snuggle" with her - - - I hope my Uncle doesn't mind too much.. (ha ha!)

I took my first "road trip" since coming home from the hospital...

I did NOT like the car seat...I did not like it...Not one little bit. 

I stayed in my first hotel...I did not like it...Not one little bit.

I went for my very first hike in the mountains AND...I COULDN'T STAND IT, NOT ONE LITTLE BIT.

So...I think it would be safe to say that "I just don't travel well yet" and leave it at that.  (Mommy & Daddy were GLAD BEYOND GLAD to get home & let me out of that seat.  I like to "arch" backwards and that seat didn't let me do that.)

But...as Johann Wolfgang Van Goethe says:

"I find the great thing in this world is, not so much where we stand, as in what direction we are moving." 

As part of the Foster Family...I will continue to move "forward" - trying new things (even if I don't like it..not one little bit.)

(I think my mommy has read WAAAY to much Dr. Seuss lately, don't you agree?)   

STILL UNIQUE AND FULL OF SURPRISES...

So...remember that organization I told you about a few weeks ago that my Physical Therapist recommended to my mommy?  (They are called "UNIQUE" and they are out of the United Kingdom.)

Well, mommy wrote to them and she heard back...It's a pretty cool organization, started for people who are diagnosed with rare chromosome situations.  The woman who contacted my mommy's name is Beverly and she is awesome!!  She wrote my mom a nice letter and sent her a package all the way from the UNITED KINGDOM for "F--R--E--E."  This lady is a super cool cat in my book!!

When my mom first got on the site a few weeks ago, she thought she may have found someone "like me." 

As it turns out...the other "person" that my mom thought was like me actually has different pieces of their chromosome #9/#14 missing/duplicated...

So..long story short....I'm still "Unique" (PERFECT name for the organization) - huh?

BUT...That's okay...because I am who I am...Unique and always full of surprises too!!

HOWEVER...The cool part is that she did send my mommy names and address' of several parents that have children with #9/#14 situations and my mommy is so excited!! 

She has decided to "write" to these parents and WE'RE going to make some new friends for me (and her too...)  These new friends are ALL OVER THE WORLD and it is so exciting!!  She loves to meet new friends who have overcome trials - straight to triumph...they inspire us to keep ...moving forward!!

We are sure meeting some awesome people along our journey..what a blessing!!

Love to you all....

PS....If you ever need to get a hold of Beverly at "Unique" - you can find her at:  http://www.rarechromo.org/html/home.asp

STRUCTURE OF MY EYES are NORMAL!!

Hi special friends!

I visited the eye doctor a few days ago and guess what?

THE STRUCTURE OF MY EYES ARE NORMAL!!

I did great!!  I tracked the light he wanted me to track "back" and "forth" and he was impressed!!

He told my parents that he feels my "eye" development is a bit delayed and their concerns are valid, but he thinks that it is because "I" am a bit delayed "overall"...

BUT...everything "looks" like it should structurally for me to see perfectly normal as time goes on.

This is totally awesome news!!

The next step he would recommend would be an in depth eye exam, but that would mean putting me back under general anesthetic & my parents are opting against that for now. 

Time is what I need...Just time...

I am making so much improvement that unless it is absolutely necessary, we are saying "no" to any invasive testing....and boy am I GLAD!!

So thankful for parents who say "yes" when necessary, and "no" when not...

My parents are learning so much...medically, physically & spiritually too...(understatement of the year..)