Click Click Click

Those are the sounds of Liam's little tongue.

Sounds that we worked hard to get him to make.

Sounds we weren't sure if he'd ever figure out.

But now,

At 3 years old as he sits besides me,

smiling bigger with every click of his tongue.

I of course smile back because,

duh I'm happy.

Every little noise,

every new word learned,

every jump,

every breathe,

means we won.

We won and CDH lost.

Every day we are tackling those hurdles,

and finding a way over,

through,

or around them.

Every day is an opportunity to overcome.

Every day is an opportunity to smile,

and laugh,

and live.

The CDH community has been faced with so much loss lately.

It hurts.

I may not know these people,

the children,

these babies,

personally,

but it still breaks my heart to see the loss.

To see their pain.

Their journey in finding a way to make this work for them.

It's a continued reminder of what we could have lost.

What we still can loose.

That things change at the drop of a hat,

the change in the wind,

from one breath to the next.

I would love to be secure in the fact that my son is 3,

a survivor,

and will always be a survivor.

But that doesn't make him untouchable.

There are a million things in life that can go wrong.

All I can be confident in is that I have this day,

this moment,

this breath.

That's all any of us can be confident in really.

Don't take for granted the little moments that make life worth living,

because one day you won't have those moments,

and you'll wish you enjoyed them while you could.

(Image is a pic of Liam receiving a flower from his cousin Chass, reminding us to take the time to stop and smell the "roses")

Want more of Liam? Checkout his facebook page

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.

All The Pretty Little Horses

In jumior high we sung this song in choir called "All the pretty little horses". It talked about going to sleep and dreaming. After the last 24 hours thats all I want to do!

{picture of Liam and I at Urgent Care}

The last 24 hours have been a whirlwind. I forgot about my appointment for my back, had to take Lanie to Urgent care, had a LONG night and woke up with a very sore back, had to take Liam to urgent care, make several calls, fills several scripts at several pharmacies.

Can today be over with?

Turns out Lanie has a yeist infection. Shes been prone to them since she was a baby. She doesn't do baths, only showers but thats mainly because we only have a shower at our house. Cream for 7 days and shes good to go but has to drink more water, go to the bathroom more often and wipe better.

Liam has been in lots of pain all day long. I texted his pedi and under his advice took Liam to urgent care. Liam has a swollen urethral. We left urgent care with little info on this. The one peice of paper they gave only said what it was not how to treat. I broke down and texted the pedi back as well as gave Liam some Motrin. Pedi said to put neosporin on it twice daily for 7 days. Thank goodness for something to help this little lamb.

Me? I have a massive headache and Im miserable. My kids are miserable. Thats just what today is. I did however find it a blessing that Liam was actually able to go to urgent care for something considering in the past it was either to the pedi or straight to Children's ER. I didn't get any coffee today but I did find popcorn chicken in he freezer so had that and some buffallo sauce. Also Justin did the dishes. See today had some perks to it.

On another good note, today is day 3 no soda!! My headache is not a caffine headache but a stress headache since I'm stressed to the max. The stress caused a few panic attacks today but they were small. More little blessings. I can see the blessings laid out before me and I'll probably feel more greatefull for them tomarrow but today I'm using them to hang on to a thread of hope to just get through today.

Don't forget to check out my facebook page http://www.facebook.com/MommyConfessionalinmyshoes

Acceptance

We must learn to accept the past before we can move on to the future. 

Acceptance does not mean forgetting or even forgiving. Just coming to terms with what has happened, admitting that "yes this did happen". 

Have I accepted our past that Liam was born with CDH and our journey has been a long hard and horrible road? Honestly and truthfully? Yes. I have come to terms with the reality that which is. I accept that it happen. And in accepting it I feel free to talk about what happened. To share my feelings verbally and truthfully admit it all. 

Yes it happened. My son was born with CDH. He almost died many times. He wasn't expected to survive and his doctors are baffled he did. Going through all that hurt more than anything I've ever experienced and it still brings tears to my eyes. My heart and soul felt shadddered. I never thought they'd be able to be mended but 2 years and 9 1/2 months later I am mending. Instead of feeling shadddered and broken beyond repair, I feel as if I've been stitched together. Still sore and healing but mending none the less. 

It's hard to put into words exactly what it feels like to be at this point. The pain is still there but lessened in severity. I feel free-er. Able to breathe easier. When I look at my son my brain doesn't automatically register the pain of our journey and memories of NICU. No instead sometimes my brain just sees a normal boy standing there, forgetting for a moment that we were ever affected by CDH. 

I'm not sure when I got to this point but it seems to have tipped my world on it's axis. Learning to adjust to a little boy who has everyday normal issues like getting into mischief and telling me no is a strange concept after everything we've endured. I can't pin point the day my brain finally said "we're good". I know it's a slow process but faith is key to it all. 

In the last week I've had less anxiety attacks and more laughs. I haven't gotten anymore sleep than I already had but things seem so much better. 

I'm writing this all because I remember when I was desperate for info on CDH and how long all the "bad stuff" would last. There wasn't anyone's journey or advice to be found anywhere. So now I offer mine. 

IT GETS BETTER!!

I can't give you a timeline because everyone heals on their own time. Each CDH journey is different so it's probably accurate to say every healing period is different. We all need our time to grieve and there is no timeline to greave. 

I look back on our journey and yea I am a bit sad but I can also rejoice that I have a purpose in life and one is to spread awareness. 

Rejoice today because tomarrow might never come!!

(Forever Love written by me)

My dear boy,

The son I always wanted,

You may not be what expected,

But the best gifts are surprises. 

You kept me on my toes,

Gave me a reason when I needed it. 

When I look into your eyes,

All I see is endless love for eternity. 

You were worth the wait my love,

Every pain and heart break.

For you I would do anything,

Hand you the world if I could. 

Because of you 

I am not afraid. 

Forever will I love you sweet

Forever will you be my miracle. 

❤️❤️❤️

Why

In this day and age I wanna know why it's not accepted to have a child with complex medical problems. Why it's not accepted for a mother (or parent) of a child with complex medical problems to be exhausted or have a bad day. 

I want to know why it's ok for a teacher to use a gate that's not supposed to be opened until the bell rings but two seconds after the gate shuts won't let a child through it. A kindergartener at that. 

Rules are rules the school says. Well if rules are rules then the same rules should apply to the lazy teacher who is just too lazy to walk around every morning like she told my daughter too. 

Lanie walked herself to class a few times until we found out she was getting bullied. Then we went and talked to the school office about it. The situation was never actually resolved except that I'm supposed to walk her to class every day. That doesn't solve the bullying. I had explained that I have a son with complex medical issues and there are times where it's not doable to get him out of the car. I explained how he doesn't need to be exposed to germs, flu/RSV band what not but they didn't bat an eye. Infact they didn't care nor were nice about telling me that I still needed to walk her to class. To be truthfully honest I felt like they were treating me as if I was some POS mom who didn't care about her kid and too lazy to walk her to class. 

The fact of the matter is that if you have a child with medical needs the world looks at you like it's your fault and they treat you like crap. When Liam was on oxygen and 24-7 feeding pump and I would have to take him with me out in public people would give me dirty looks. Gee I'm so sorry if your upset by seeing a baby hooked to oxygen and a feeding tube. Get over it! I live with it every day. And don't look at me like in some druggie who couldn't kick te habit while prego. I don't do drugs and my son isn't a drug baby!

I did everything I was supposed to while pregnant. Took all the right meds, ate all the right foods and yet he was still born sick. There is no known cause of CDH. Nothing I did made Liam be born with CDH. There was no way to prevent it. It wasn't my fault. You shouldn't judge people based of the small snip it's of what you see or hear. 

A child growing a huge fit in the middle of the store and the most everyone will automatically judge the parents as bad. What they don't see is the behind the scenes. They don't know if that child has any medical issues. They don't know if the child is easily over stimulated or has autism or what. And they don't care either. The majority of te world thinks that these kids and issues should be locked behind closed doors and hidden away. 

That's the problem with society. They want it all swept under the carpet instead of spreading awareness band acceptence. 

This all leads back to this mornings incident with Lanie trying to get into the Kindegarten playground. After two weeks of hardly any sleep at all and being up since 3am I am exhausted. Liam is sick. He doesn't need to be out in the weather or out exposed to other viruses. I just couldn't find the energy to get Liam out of the car and walk her all the way to the play yard. I just couldn't do it but does anyone understand. Nope. No one even tries too. 

I don't expect a 6 year old to understand but she understand better than any adult. She was upset the teacher was rude to her this morning but understood why we couldn't just walk to class. She was crying when she walked back to me. I held her until the bell rang then sent her on her way. I watched as the same teacher scolded her again and with slumped shoulders she walked through the gate and to class. I wanted to go run and scoup her up and take her home. We could cuddle on the couch and watch cartoons and cry if we wanted too. Just spend out bad day together. But I couldn't do that. She needs school and needs to find her own way to deal with everything. I can't tell her the right way because different thins work for different people. 

I've explained to her teacher that she is more emotional that most kids but it's because all she went trough since Liam was born. She had to brave mommy being gone, then brave NICU daily, having mom and brother ripped away every time Liam got sick. She's been through a lot. More than any kid should have to experience. I warned her teacher that she gets upset at the littlest things and cries at the drop of a hat because her emotions and stress. So when a teacher makes her cry because she's being mean to Lanie I get furious. 

Why is it not accepted to have a medically complex child or for a mom to be exhausted but it's accepted that a teacher uses double standards and is mean or rude to a child accepted?