Perfectly Imperfect Thanksgiving

I've learnt through-out my life that nothing is what it seems to be.

That perfect isn't always perfect.

Today we had a perfectly imperfect Thanksgiving.

And I'm thankful for that.

The turkey was perfectly cooked.

The ham was amazing.

All the food was great.

I was exhausted and kept forgetting what I was going.

I never changed out of my PJ's.

I never did my hair.

I forgot to take pictures.

Liam was scared of the Thanksgiving parade on TV.

He refused to eat anything today.

He fell asleep on me so Liam and I were left at home.

Then he kept waking up with night terrors.

I had a down and out moment.

Thought there wasn't much difference between the two of us being home alone,

and being at the hospital alone.

I got frustrated that Liam refused to eat at all.

That even though we were home,

we were still alone.

And then the moment was gone.

I am thankful we had a great Thanksgiving dinner together.

That we are all together at home.

Both kids seemingly healthy.

We are alive.

I am also thankful that my pain isn't worse than it is.

Instead of being upset that I missed out on a larger family gathering,

I am going to be thankful for this quiet time.

Time I was able to talk to my brother on the phone.

Time I can watch Christmas movies on Hallmark.

Time to wrap some of those Christmas gifts.

I thank God for today.

For every day,

and for our perfectly imperfect holiday.

School Days

Liam loves school. Every school day we show up early. It's part of the routine and routine is important. That and I don't do it purposely. Lanie has to be dropped off first then we drive across town to Liam's school. Today he only had to wait 5 minutes before being able to go into class. 

Are you ready for Liam? Cause he's ready for you!!

School days put Liam in such a happy mood in the mornings. And doesn't he look adorable in that popeye shirt?! Ironic I know since he's a skinny boy but that's probably why I like it. 

At pickup I snuck into the room so I could watch him interact with the other kids and teachers. 

Today they were singing a song about a whale. Last wensday it was circles. (There are other kids there but I cropped the picture where they wouldn't be seen)

Liam loves music time. Today he seemed a bit tired even during this time. 

Liam made some art work today. It's so exciting to finally have art work come home from him to hang. 

Wensday they worked on hands, counting fingers. 

This came home today but was worked on wensday. 

Today they focuses on feet and counting toes. 

Try actually traced Liam's shoes to make these. Even thought this is his shoe size his feet are much smaller. His shoes just have to be big to accommodate the braces. 

I love having art work to show off. 

After getting home Liam spent some quiet time playing in his room. I had just changed his bedding this morning. 

Have I ever mentioned what a lucky little boy Liam is? For his birthday he received not one but two Thomas the train blankets. Liam loves Thomas the train so when I changed his bedding this morning and took the last Thomas blanket off his bed I decided to put another one on. This made him very happy when he came home. 

Liam would carry both blankets around the house every day if he could but he's been good and settled on snuggling with them in his bed. 

We've been so blessed that Liam has come so far. We know it could have been way worse than it was. We love our monkey boy. 

Flash Back Friday: Baba

       
           I don't know if any of your remember Liam's very favorite stuffed puppy Baba. He used to carry Baba everywhere. Baba was the first toy he really took too and the first one he ever named. He said Baba before he even said mommy or daddy! The day he named Baba was epic. It was during a Bright Start visit and we were using the stuffed dog to get his eyes to follow it around as well as reach out for it. It was one of the only toys for a very long time that he was willing to hang on to and hold.

          He had looked at the stuffed puppy and worked himself up to say "baba". All jaws dropped. WHOO HOO!! It was awesome. I had been on the verge of tears, trying so hard to keep those from escaping. I was so happy. He was showing signs of improving and this day was huge. Since then he's always called that stuffed puppy Baba. When we moved July of 2012 Baba went missing. I had been so careful throughout the move to keep Baba close to Liam but somehow he went missing. It wasn't until August of 2012 that Baba (or baba's twin brother) returned home to us. You see after 2 weeks of looking for Baba I gave in and bought a new one off Amazon. I just couldn't keep this little boy away from his puppy, and I couldn't imagine anything else soothing him during his hospital stays. He needed his puppy.

       

          Baba was ingrained into our lives. It felt like he was a part of Liam because everywhere Liam went that puppy went too. Baba was buy his side while recovering from several surgeries, countless hospital stays and many days spent sick  in bed. Baba offered just as much comfort, or maybe even more, than he got from me. At the time Baba went missing he had been with Liam for 6 months. 6 months was a long time for the adventures he went through.

Baba stayed by Liam side through so many hospital stays.

His smiling face and soft patchwork body always helped Liam feel better.

Liam's 11 month pictures were taken with Baba by his side.

Where is Baba now?

Oh he's around...and so is his twin brother that also goes by the name Baba lol. We keep them by Liam's bed afraid to loose them again. They still provide lots of comfort and love. He still chews on their ears and tails and plays with them. Sometimes he makes barking noises and acts like Baba did it. He also likes to pretend Baba is licking him and he will laugh and say "OOOh puppy your funny" and "stop licking". It just more proof that a bond between a boy and his puppy cannot be broken.

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.

Unexpected Eventful Day

Today has been unexpectedly event here for us. Lost of blessed little moments that I am so happy I got pictures of because in years to come they will be treasured by the kids. 

Lanie and I started today off with a breakfast "date". I woke Lanie up a few minutes early today so she'd have plenty of time to get dressed then I took her to have breakfast at school. She was thrilled.

She opened up her milk all by herself, which she was so proud of doing. 

Then she opened up the little package containing a napkin, spork and straw, all by herself. 

Lastly she opened up her cinnamon waffle, all by herself. I asked if she needed help but each time told me "no mom, it's ok I got it". 

As she ate she people watched. Something I've always done as well. She talked about all the solar systems that the older kids were carrying around. She thought each and every one was made perfectly and commented that she bet it took them a long time and hard work to make. She also said she couldn't wait to make one of her own in 1st grade. I explained that it would probably be a few years before she had to make one for school seeing as how the children carrying solar systems had to be in 3rd or 4th grade. At this she just shrugged her shoulders and kept admiring them as each one passed. 

After eating her fill she placed her untouched fruit and apple juice in her backpack to save for snack at recess then we made our way to the kindergarten playground. On the way we met up with one of her friends, Lane and his mom. The two played while us moms talked and watched. 

After getting home from dropping Lanie off at school I decided to make breakfast since Liam, Justin and I hadn't eaten and were hungry. After breakfast Liam needed a shower. He was covered in jelly. After a shower it was time for bright start. 

Miss Julia had a couple new activities for Liam. First Liam practiced lacing beads onto a shoe string. He's getting better at that. We did notice that his little arms were shaking as he did this activity. Maybe he's just tired today, we aren't sure, but coupled with the decrease in talking this morning points towards tiredness. 

For his second activity She broke out a peice of paper and scissors. Yes scissors. She apologized in advanced for showing him how to work scissors but it was a skill she had to access. 

He was able to cut using two hands but not one handed. In the above picture Julia is showing him how to hold the scissors and how they work. 

This smile says it all. Not only did he think cutting paper was the coolest thing but he was so very proud of himself. Despite the fact I'm worried he might now seek out scissors and start cutting things, I am very proud f him as well. 

Lastly she laid one card at a time down and asked Liam what each child was doing. Liam would tell her 

"Running"

Or "sleeping" depending on the picture. 

On one card of what looked like a child writing Liam said "cutting". Julia goes "huh? He's not..." Then she noticed a pair of scissors laying on the table by the child. So of course he was praised for noticing just a little detail. 

During bright start fed ex delivered a package for Liam but it was time to pick up Lanie right after Julia left. So after  Lanie got home from school Liam was able to open up his package. 

The package was from the Kira Foundation. thekirafoundation.org (they have a Facebook page as well). The Kita Foundation provides "Bucket of Love" to children fighting cancer. Liam does not have cancer but there was a misunderstanding and Liam's name was put on the list to receive a bucket of love from these amazing people. After contacting them through email they said that they did know Liam did not have cancer but that the bucket was made just for him and the very amazing woman I talked to thanked me for spreading CDH awareness and that before Liam she hadn't known of it. 

We want to send a very big thank you to the Kira Foundations. Liam absolutely loves his bucket of love. 

Lanie was teaching Liam how to so puzzles on his new Mickey Mouse puzzle. 

I love this because they worked together to finish this. 

Later on the kids uncle showed up unexpectantly. The kids love their uncle. 

Uncle and Liam play fought. 

And uncle let Liam win. 

The kids had a blast and we had a very blessedly blissful day. 

(Besides my back pain)

Again we want to thank the Kira foundation and we hope you go like their Facebook page and visit their website. 

Oh and this momma had a job interview on Monday 😊❤️😊❤️😊❤️😊❤️

Amazing fantabulous news

I have HUGE news. Super duper fantabulous news. 

Liam went to the GI today and his weight gain was confirmed!! AND even better we are lowering his night feed to allow him to get hungrier so he will eat more during the day. AND the most fantabulous of all: He gets to take daytime boluses via MOUTH!!! NO TUBIE (unless he refuses to drink it) she gave me pediasure to try and if he likes it she will write the script to change him over. How many likes can we get for that!! I could cry right now. Just last week I didn't think we would get to this point ever and yet here we are. It's a miracle!! I'm not counting my chickens before their hatch all. Just to hear those words is amazing. Things really do get better when you least expect it!! #cdh #itgetsbetter #gtube #lightattheendofthetunnel 

{below is a picture of Liam who fell asleep eating lunch yesterday. He got so full me conked out. This images touches my heart so much because because it was the first time he had eaten so much and gotten so full it made him sleepy. Usually it takes a bolus to do this. I am so overwhelmed with emotion right now.}

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

Forever Love

"I protected you in my womb, I have you life. I cried when they took you, I rushed to be with you. I sat by your side, I watched as you fought. I held your hand wile you slept, I cried when you tried. I laughed when you smiled, I held you close when I could. I kissed you every chance I got. I sang you too sleep, I read to you every night. I never lost faith, I never gave up. I loved you then I will love you forever because I am your mother." I wrote this for Liam about our experience in NICU #cdh #cdhsucks #survivor #wasntexpectedtosurvive #heshowedthem #miracle #nicu #blessed