4

Yesterday we celebrated Liam's 4th birthday. The night before I rocked him before bedtime, hugging him close and told him how proud I was of him for surviving all he's been through and staying strong. 

I told him how his strength has taught me to be strong. How this journey has made my love for him stronger and my appreciated for waking up each morning greater. 

Then I cried a few tears. And for once, on the eve of his birthday, they were tears of joy. I cried tears of joy because we survived. Because this past year was so amazingly free, having had a total of zero hospitalizations and only two out patient surgeries.

We got a taste of what life should really be like without our little lamb and I know that this is only the start. So my tears were also for our future happiness and freedom and simply having faith that there would be happiness in the future. 

Yesterday I sang Liam happy birthday at 5 am when he woke up from a bad dream. He fell back to sleep with a smile on his face. We went and bought cake. One for his birthday party and one for the 4 of us after dinner.

Liam got the Mario party he'd been asking for. Both cakes in the Mario theme. I took him to Adventure Park where he played arcade games to his hearts desire, ate pizza, drank soda, ate cupcakes, and won prizes. 

He had a blast, exactly what he deserved. After dinner of his choice (more pizza), he opened presents. We bought him a Mario backpack and lunch pail for school. He got a Mario and a Luigu action figure. A Mario cup, Mario movie. Liam was excited. 

Sister gave him a goody gift bag filled with a Thomas movie, Thomas book, and several little toys. We also put together a minion gift bag with a reusable minion bag, two minions that light up and three pairs of minion socks. And just like a normal boy he held the socks up, made a eww noise then tossed the socks aside. We laughed. 

I may not have pulled off the big extravagant party I really wanted to throw him, but I learnt that he had everything he wanted and more with just a few friends and cake. It was perfect. 

Beauty In The Past

          I was on Facebook just looking at post as normal when I saw a beautiful post by the page Neonatal Intensive Care Awareness Month about Kangaroo Care. They posted a picture of a mom holding her baby with as much skin to skin contact she could without being completely topless. In the comments a few other moms whose babies where in NICU commented with pictures of their babies when in NICU using the same Kangaroo Care technique of skin to skin contact. One of the pictures was a baby born at only 24 weeks. The baby was so tiny it (the gender wasn't posted) fit in the plam of her hand. The baby had to of weighed less than a pound.
          I found this picture (as well as the others) to be very endearing. To me it spoke of courage and strength for both the baby and it's mother. I showed my husband and he had a complete different reaction. He asked me why I keep reading depressing stuff like that article. I explained how I didn't see this as depressing. Yes at one point I would have but I've long ago lost my anger for our NICU experience. I explained how I felt this picture was beautiful and that it told the story of survival and the will to fight. It told the story of a miracle that a baby so tiny could survive being born at only 24 weeks.
          He said again that it was depressing and that I needed to stop looking and reading things like that. He felt that it was only a reminder of what our son went through and how he's not "normal". My jaw hit the floor. I don't need a reminder from other peoples pictures and stories that my son isn't "normal", how could I forget? But what I see when I look at him is the miracle that he is. Every breath he takes is a miracle for the baby that wasn't expected to live. Every smile and every laugh is a reminder. After years of struggling with this, I've finally reached a point where I can see the beauty in the struggle. I can see past the tubes and wires. I can see the blessings in the midst of the struggle. And that I feel is the key to moving on.
          Just because you move on doesn't mean you can't visit the past. It doesn't mean you have to forget what you've been through. Every trial we face molds us as are we are today. It just means you can look at it differently than you did back then.

There beauty in the fight. He may be laying here sedated but he's fighting for every second. The fact that he has the will and strength to fight is just plain beautiful.+

One of the first times Liam was allowed to be fully alert and awake. Staring into his eyes and having this moment meant the world to me. It was beautiful.

Big sister Lanie meeting her little brother for first time. This picture speaks volumes. It tells a story of a girl who has been waiting a long time to meet her baby brother and to love him. It a story of acceptance and un-ending love.

This picture tells a story of a mother who waited what felt like eternity to hold her child. She sat by his side day in and day out, supporting him just for a chance at this moment right here. The way she looks at her son with such love and devotion. The way her hand it placed tells how gentle shes being so not to hurt him as well as how much she can't believe this moment has finally arrived.

These pictures tell a story of strength and survival, of never ending love and devotion.

Now tell me these pictures aren't beautiful.

I love my son for who is and what he went through only helped him develop into the gentle, caring, life loving kid he is today. Our story is beautiful. Plain and simple.

IEP

When the words "special education" was used Monday during Liam's IEP meeting my heart sank. Not because he needs the extra assistance it provides but because my fear that others will lump him into a category and make fun of him or think ill of him. I fear that they will tease him and call him names like "stupid" because that's what kids, and even some adults do these days.

I fear they will never give him a chance. Liam is very smart. He is bright, intelligent and adorable. He's just behind because of all the time he spent at the hospital due to being sick. Thanks again for that CDH! But now he is stronger, and healthier. He's starting to catch up and will do so quickly with the help of merely observing his peers. 

So why special Ed? Well during the IEP meeting I was given report by a physical therapist, phycologist, speech pathologist, special education teacher and more. I learned a lot about my baby boy as well as saw him through a different light.

As much as I hated hearing that Liam required Special education, I not only knew he would but expected it. I want Liam to get the best and get caught up as best be can as early as possible. This great team of ladies who assessed Liam had his best interest at heart as they worked with him to evaluate. They were all in agreement that he is behind but they feel that its because of all the medical needs he had and spending so much time in the hospital. They all feel that he will thrive in a preschool setting with other kids his age who are developing typically. Intellectually Liam doesnt qualify for special ed but they feel that because he still has many medical needs that he will benefit greatly from being apart of these classes.

Everyone who was a part of Liams IEP assessment was smitten with with. The education Specialist told me that looks alone dont fool her and although he is very adorable but his personality is sweet. What you see is what you get.  The report I was given and discussed in our meeting were lengthy and numerous. I sumerized them as best I could so that you could still get an idea of Liam.

Yes I am sharing them because I am not and will not ever be ashamed of my son. His progress in the last year alone has been HUGE. In the last year he started talking, walking, eating and becoming his own person. I am very proud of his progress. Along the way he has become more onry (a typical boy at the age of 2) but has continued to keep his sweet personality and mentality.

Liam was born the "underdog" with all the statistics stacked against him. Time and time again he has proven the victor, the survivor, the one to prove everyone wrong. I will always stand by cheering him on as he goes through life doing the impossible. Everything Liam does is "impossible" because he wasn't even expected to survive. The doctors were positive CDH would win and that my baby boy would grow wings and fly up to heaven to be with God. But Liam decided he wanted to fight. He wanted to prove them wrong and show everyone that nothing is impossible "for the very word impossible says that everything is possible".

With each new experience I go through with Liam I learn something new, get a new outlook on things. This process of IEP meetings and assessments has taught me a few things:
1) IEP's aren't as bad as I was told they'd be. I'm sure it depends on who your working with but the team we have are amazing people.
2) Special education is just another word for extra help. Liam's always needed extra help along the way rather its breathing, feeding, walking or now learning. I feel lucky and blessed that this team wants to help Liam and are doing everything they can to do so.
3) I am actually ready and excited for this next stop in our journey with Liam. Preschool!! It's a crazy thought but to think we've gone from almost constant hospital stays and from one illness to another to preschool. Again I feel blessed that Liam has come this far and is now actually able to attend preschool! This time last year even daycare was NOT an option because a "simple" cold would land him in the hospital. But here he is. Healed, on the mend and oh so blessed!!
4) I need to stop being such a worry wort and let Liam fly. Liam falls, or runs into the wall because he wasn't looking or whatever and I freak out. He however just laughs and takes off again. Liam doesn't need me to worry about him constantly anymore. Its time I start treating him like a "normal" almost 3 year old. He can't succeed if I continue to baby him. However I can still kiss the boo boo's when he asks and cuddle as he wished. And sneak in as many kisses as I can before he grows out of that! *sigh* My baby is no longer a baby. He's not even a toddler really but a little "big boy".

So without further adue, Liams IEP Assessment:

Please keep in mind Liam was 34 months old when the assessment was done.

Speech and Language Assessment:
cognitive: 24-30 months understands the concept of 1. Identifies rooms in the house. demonstrates use of objects, enjoys tactical books and engages in make believe play.
receptive language: 24-30 months follows 1 step directions, points to pics and names animals and objects, and knows many body parts.
expressive language: 24 months. Liam uses 2 word sentences, uses elaborate jargon, uses intelligible words 65% of the time, echoes prominent or last word heard and imitates environmental sounds.
comments: Liam made good progress from the transitional planning meetng (TP). During the assessment meeting he imitated alot of words and it was hard to determine what an imitation was and when he was trying to communicate something because he imitated what the assessors would say or ask.
non-speech test for receptive language: 29-34 months
non-speech test for expressive language: 22-26 months.

**Speech Therapy is recommended

Physical Therapy Assessment:
Gross Motor Functional Level: Complete to 20 months with scattered skills to 26 months.
Meaning that developmentally on the physical level Liam can do all goals for kids up to the age of 20 months but only some goals for kids 20 months and up. He can walk up the stairs using holding onto someones hand or a rail putting one foot on the step followed  by the second foot on the same step but doesn't alternate feet or do one foot on each step. Liam does not jump but easily walks sideways and backwards.
Playground motility: Liam requires moderate assistance accessing the climbing walls. He is able to go up and down the stairs and slide down the slide on his own and transition from level to unlevel ground.
Mildly low muscle tone, mild muscle weakness overall, range of motion is within normal limits. Liam exhibits moderate pronation of both feet. Left foot exhibits mild forefoot adduction. Exhibits ankle instability bilaterally.
Gait: walks forward with a mildly wide base of support. Exhibits mild foot drop in swing phase of gait and tends to trip when walking and running.
Posture: exhibits wide base of support in sitting and very mild upper thoracic scoliosis with mild rib malformation.
Object Manipulation: throws a ball forward underhanded but does not catch. Kicks a ball with his right leg.
Strengths: Liam is a very social little boy who enjoyed exploring the therapy environment. He enjoys climbing activities, and attempting new motor skills. He exhibits good walking and running skills and easily squats in play and resumes standing.
Concerns: Liam exhibits mild to moderate delays in his gross motor development. He is not yet jumping and exhibits difficulty descending stairs. He is not yet catching a ball. Liam requires moderate assistance climbing on the playground climbing equipment.
Reccomendations: It is anticipated that Liam will be independent in his classroom mobility. He will require stand by supervision to moderate assistance. Liam would benefit from educationally based physical therapy services to address playground safety and mobility ans stair climbing.

Bright Start Present Levels:
                                                 28 Month age Equivalent   ;   35 Month Equivalent
Fine Motor:                                       19 months
Gross Motor:                                     18 months                          24 months
Cognitive Delevopment                       18 months                         24-30 months
Communication Development
Receptive:                                         18 months                           24-30 months
Expressive:                                      18 months                             24 months
Social/Emotional:                          24-36 months                          30-36 months
Adaptive:                                       12 months                                  18 months

Development Assesment: Cognitive 87 19th percentil, age equivalent 27 months, average
Communication 18%tile adequate
Daily living skills 12%tile moderate low
Socialization 45%tile adequate
Motor skills 2%tile low
Adaptive Composite 10%tile moderately low

Special Education: Liam doesn't qualify based on intellectual disability but does because health reason.

Education Specialist Report:
Pre-literacy: Liam was able to right a book, turn the pages of a chunky book and look at the pictures with interest.
Pre-Math: When presented with color bowls Liam was able to sort like colored bears to corresponding bowls. With minimal verbal prompts, he was heard to count by rote from 1-8 when pointing to objects in a book.
*According to Bright Start developmental levels. Liam is able to show the concept of one and give one of many. He is able to engage in simple make believe activities.
Communication skills:
Receptive:According to mom Liam can talk but there are days that he is quiet, but he can be prompted to use familiar phrases such as "thank you". According to Bright Start levels Liam is able to follow one step directions, knows many body parts, and can point to pictures of animals and objects.
Expressive: When comfortable, Liam will repeat prompted one or two word expressions. He is able to identify verbally a variety of farm animals, colors and familiar request.
Fine Motor skills: During assesment Liam was observed to use his left hand more often than his right when doing fine motor tasks and he used light touch when grasping items. (Liams touch, speech were light. She feels that this just might be a part of who Liam is)
Gross Motor Skills: Parent stated Liam has difficulty running due to the braces on his feet (needs them for pronation. Because of the pronation he falls) He can push with two feet when on a bike. According to Bright Start Liam is able to step up and down the stairs holding onto the rail and can climb up onto furnature.
Social Emotional/Behavior: Liam was cooperative and friendly during the assessment with adult examiners. He was interested in the testing tools and made good effort to comply with adult requests. According  to Bright Start levels Liam initiate own play requires supervision to carry out ideas. He makes his demands known and can initiate his own play.
Skills Adaptive/Daily Living Skills: According to mom, Liam shows awareness that he has a soiled diaper but is not yet potty tained. Parent stated that he assists in dressing. Mom states that Liam is still tube fed but does not deny food. He is efficient at "chew and swollow" and mom is not concerned about a chocking hazard.
Conclusions: Liam has health issues that need to be addressed for present levels from the nurse. Mom reports that Liam enjoys doing puzzles and playing with cars and trains.

Recommendations:
1) It is recommended that Liam participate in preschool activities that support language opportunities throughout the school day and appropriate social interaction with typically developing peers.
2) It is also recommended that Liam participate in preschool activities that introduce curriculum that prepares students for Kindergarten.

Joyful and Triumphant

2013 has been a

Joyful & Triumphant

year for Liam...

And the entire family.

Liam has made so much progress

and has grown so much.

God has been VERY busy

healing our Little Lamb.

We started out the year

with Liam struggling to walk.

He couldn't walk on his own,

let alone stand without assistance.

Still he was happy,

and playful.

The year started out rough.

Liam wanted to crawl everywhere,

but he was hooked to the feeding pump

20 hours per day.

Liam was approved for Physical Therapy.

His PT realized he has low muscle tone in his ankles.

She figured that was the reason he couldn't walk at age 1 1/2.

IFO's were recommended.

And thanks to a generous donation

from a prayer warrior,

Liam was able to get his IFO's.

Still is was a struggle.

We did leg strengthening exersizes daily.

He soon was able to walk holding onto things.

He climbed before he could walk.

Even learned to climb out of the walker

making is unsafe to use.

Which in turn made it very hard

to keep him from pulling out his feeding tube.

Liam wanted to walk so bad

and was so determined

that he even started spider walking. 

He'd stand on all fours,

and his head,

and "walk" across the room.

Then one day out of the blue

we were at the doctors office for a routine visit

when Liam stands up

using the wall to do so,

then starts walking down the hallway.

I sat there shocked.

Then I remembered to grab the camera.

I videoed Liam walking all the way to the back.

It was amazing!

This video was taken the day he decided

he wanted to walk.

May 28th 2013

http://www.youtube.com/watch?v=FKGn2iRiUmQ&feature=youtu.be

It's so hard to believe

that its only been 6 months.

I remember swooping him up into a big hug

right after I videoed him,

then I cried.

I cried again on the way home.

And as I sat here now watching the video,

I am teary eyed.

Its AMAZING!

The same day he had Bright Start and PT.

They were shocked as I was.

Click to review the blog post:

http://mommyconfessionalinmyshoes.blogspot.com/2013/05/unexpected-surprise.html

Liam had several hospital stays

and setbacks throughout the year.

When he finally started eating we were thrilled.

Unfortunately every time he got sick

he would stop eating

and it would take months to get him to start again.

This past year we ditched the GJ tube,

and replaced it with an AMT mini ballonless button.

Hes gone from 20 hour continuos feeds,

to 12 cont night feeds,

and 3 bolus feeds during the day.

We also added Blended diet feeds during the day.

When we started that,

he started eating more,

drinking,

and gaining weight.

He's still super tiny for his age

but growing great.

He's taller and weighs more

than I did at his age.

So this momma isnt worried

about his tiny size as long as he continues to grow.

Liquids were really hard.

For awhile he would only drink

out of a honey bear.

Then it was a baby bottle.

He finally settled on a specific sippy cup.

He's been drinking out of the same kind for about 6 months now.

He's eating now,

but small amount at a time.

He loved dorritos,

french fries,

chicken nuggets,

almost all meats,

pizza,

spagetti,

beef jerky and so on.

We're still dealing with texture issues.

Oral and environmental.

He will let you brush his teeth now,

but not with tooth paste.

He gags and vomits if you do.

We're still having issues with his feet

and he's been reffered to a specialist,

who has yet to call.

Probably because were still waiting on isurance approval.

He can walk without his IFO's now,

but his ankles are so bad they practically touch the ground.

(Theyve gotten worse since this pic)

Verbally,

Liam is improving daily as of this last month.

We were getting worried about him.

His words still arent very clear

 but we understand them.

He speaks some sentences

and copies everyone.

And we made progress in spreading CDH Awareness!!

I sent in a letter to our Mayor.

After reading she declared CDH awareness week in March every year!

Unfortunately I couldn't be present to accept the reward.

But Liam's Grandma was.

Its been an amazing year for our amazing little boy.

Hes come so far!

As you can see

it's been a triumphant and joyous year for us.

What will next year bring?

Just that time of year

You know when fall hits and you say,

"What happened to summer?"

Yea that's where I'm at.

We didn't get in near as much as I wanted to this last summer.

Since June Liam has had

Pneumonia,

Infection of his G-tube site 3 times,

and 2 colds/virus's.

All of this and:

1. It wasn't even the scary cold/flu/RSV season (aka quarantine season)

2. And only resulted in one hospital admittance!

The fact that he was sick that many times and was only in the hospital once

is absolutely AMAZING!

The fact that he was sick that many times

and it wasn't even quarantine season is scary.

To think that just a few months ago

an infection of his G-tube site would land him in the hospital,

a year ago a cold would land him in the hospital,

and now he's at home fighting all this on his own.

There is reason to have faith in the future

that things will continue to improve,

that one year soon,

Liam just might not have to be quantantined all winter long.

But sadly he does,

and the season is upon us.

The paperwork for synagis,

to help fight RSV,

was submitted a month ago.

Two weeks ago they were informed that pediatrician referral wasn't enough,

that insurance required the pulmonologist to make a referral on Liam's behalf.

Technically he fits the criteria.

Has chronic lung disease,

asthma,

and frequently requires oxygen.

BUT now the ball is in pulms court

to be bounced back to insurance.

That was two weeks ago.

It's going to be a scary year if they  don't approve them.

Liam just "got over" an infection of his G-tube site.

We just stopped the antibiotics on that this last Tuesday.

His stoma looks great now,

but he's still not tolerating all his feeds.

He's doing great with his day time bolus's

but not so good with his continuous night feed.

Not sure if he caught a virus or not.

He still seems to be gaining weight

and growing taller.

But now here we are,

at the time of year we start quarantine.

Liam has a therapy "field trip" coming up with Bright Start.

It will be our last fun outing for awhile.

And with it goes all my hopes I had had for summer.

We didn't get a chance to go to church like we wanted.

That was a huge one for me.

The hope that we'd get to go regularly when Summer hit,

got me through winter.

Yes I watch the surmons online when my internet is working properly,

but its not the same.

I still feel blessed that he escaped summer,

with so few hospital stays,

and we got to make a little vacation

and take Liam to the beach for the first time.

I know I need to get those pictures posted.

And Liam is doing so much better than he was this time last year

so I have faith that next year we will have open doors

to do things differently.

I would love my kids to be able to go to

Church for the Christmas surmons for once.

And for Lanie to go to Sunday school every week.

I know a real Christmas tree is out of the question right now,

but maybe we can get a real pine wreath to hang,

or atleast show Liam a live tree.

His asthma and allergies just aren't up to a real tree yet.

But I'm getting ahead of myself here.

Lanie is doing great in school.

She loves it.

She was sad when she didn't have homework

the first month.

And now she finishes her homework

AND ASKS FOR MORE!!

I love that she loves school.

She does very well listening in class,

and concentrating.

She even has learned to read some.

Its so amazing.

She says she has lots of friends.

I've watched her play before school,

and she does have lots of friends lol.

I was quiet and shy when I was her age,

but not Lanie.

She's outgoing.

My little social butterfly.

She's very picky on her clothes

and always wants to look nice.

There are some outfits she picks out that I'm not sure I like

but since they aren't inappropriate for school

I let her explore her own fashion sense.

She should be allowed to be creative,

and develop her own personality.

I think soon I will take her shopping,

give her a budget,

and let her choose the clothes she likes.

(as long as they are appropriate for age and school)

I started working.

Its been officially a week now.

Last Friday I had orientation.

I'm doing good at work,

and having alot of fun.

It feels like a mini vacation away from home.

Since working,

I've been happier.

More energetic.

Justin has been able to be home with the kids

while i've been working.

Liam's doing great with it.

He still wants his cuddles and loves from me,

but he isn't as clingy.

Doesn't follow me from room to room.

He still throws a fit sometimes when I leave,

but not every time like he was doing.

When I get my first paycheck next week,

I think Ill surprise both kids with something.

I think new shoes and outfit for Liam

and Ill take Lanie on a girls day to pick out her own.

Then I'm going to use the rest of it to get started on Christmas.

So all in all life is pretty great.

God is amazing.

Liam's 2nd Birthday pt 1

For Liam's birthday, we kept it on the simple side and had lunch at a resteraunt. We invited friends and family to join us. Liam had a blast seeing everyone. These are the pictures from mobile devices.

The night before, Liam got to go to Build A Bear and he ended up with SuperMonkey

Big Sister Lanie all ready for the party

Mommy ready for the party.

Liam says "YAY"

He had a blast

Super Team 

CAKE TIME!!!

Liam's first year eating his birthday cake :)

He's come so far.

Getting ready for bed.

 

Christmas is 9 days away and with each day the excitement builds.

 

Our Elves are working over time making sure everyone is behaving.

 

Christmas pictures have been taken.

 

The tree decorated.

 

The present's all wrapped.

 

The stocking all hung

And the eve lights lite up

 

 

The kids have seen santa

whispered their wish list.

 

Cookies have been baked

Hand delivered to the neighbors

 

Family came to visit

 

Stories have been told

 

Laughter has filled the house

 

Cuddles have been shared

 

And Candy canes have been eaten

 

Every day is a day closer

The wait is a thrill

Cant wait to see their little faces alight

As they open their gift!

 

 

We pray you have a Merry Joyous Christmas.

...

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Updates:

Liam is doing good. He has had no issues with his mediport and the pain from the surgery has subsided. He is back to being a happy semi-healthy sweet little boy who is growing leaps and bounds. He is learning so quickly. He now crawls all over the house, travels along the furnature, pulls things in and out of tubs and blows kisses. Tuesday he is getting braces for his ankles to help stabalize them. The idea is that his weak ankles are preventing him from walking or standing unassisted. The hope and prayer is that these braces will allow him to start standing and walking. WALKING!! Its such an exciting concept we love it! God has done amazing things with Liam and continues to heal our sweet little lamb. We couldn't be prouder or happier of our sweet boy. Liam still isnt eating by mouth but we've been making awesome breakthroughs. He now can put food in his mouth without retching! Sometimes he likes to eat cool whip, lick on suckers or take a small bite or two of a mini reeses peanut butter cup. Thats HUGE! And today little lamb had his very first candy cane ever and HE LIKED IT!!!  Feeding thereapy was approved and his evaluation is on Jan 7th so that will help to get Liam eating like he is supposed to. One of my Christmas wishes was for Liam to eat and I couldnt ask for more! Lanie has learned to write her name and has become great at drawing. We're encouraging her by framing some of her art. She gets so excited to see her work framed and hanging on the wall. Her imagination knows no bounds. We've been so blessed. Thank you all for your prayers.

A Look Back at Last October

 

This time last year we spent our time at Childrens Hospital with Liam. He was admitted for Failure To Thrive, vommiting and not tollerating feeds. He was 3 1/2 months old and had only spend a total of 2 weeks at home. We were scared. Liam ended up staying in through October into early November, a total of 6 weeks straight during this stay. He ended up needing a Nissen Fundoplication and a G-tube. We are so very happy that this year, Liam has NOT been admitted at ALL during the month of October (lets hope it stays that way) and that we are getting to spend Halloween at home, the way it was intended. It's Liam's first Halloween home and we are so very happy for that.