My Health Update

I haven't blogged much about what's been going on with me, my health. 

For some reason it's easier for me to give short updates on facebook versus blogging.

Why?

Because when I sit down to write a blog post I let it all out.

I hold nothing back.

I haven't wanted to go into detail about my pain because I didn't want it to see as if I was complaining.

It is what is it.

So here goes...

For the last few months my body has been riddled with pain.

It started with my back,

My doctor,

who is absolutely amazing BTW,

has been doing is absolute best to fix me.

He ordered an Xray.

Xray shows the early stages of digenerate disk disease.

Seriously no big deal because everyone gets it as they age.

Other than that the Xray had nothing to say.

Because I've been in pain since 2008 its considered chronic.

My doctor referred me to Physical therapy.

I've been going for like a month now.

They felt that if I strengthened my core that it was help my back pain.

The reason is because my core is so weal that my back is having to work harder to make up for that.

My core is getting alot stronger.

I can feel it.

Back pain isn't getting better.

As of two weeks ago things got worse.

Out of nowhere my left leg from hip down got that tingly numb pain feeling like when you foot falls asleep.

It has only gotten worse from there.

My physical therapist thinks I have permanent nerve damage from when I had aspertame poisoning back in December.

I went to the doctor as soon as this happened and he added Gabbapenton to my meds.

He felt this would make my nerves talk to my brain and help the pain go away.

We had also started Naproxin.

As of yesterday the "sleepy foot" feeling has affected my whole body.

I saw my doctor today.

I had too.

Ive been in so much pain.

I almost went to ER last night because I hurt so back.

The pain was so intense I vomited.

Today I went to talk to him.

I told him everything.

He switched my pain med to tramadol.

A pretty heavy dose too.

He also maxed out my Gabbapenton.

He said that if this doesn't help to come back immediately.

I have to go back next week to follow up.

After I left he went and reviewed my medical file all the way back to December.

He called me and asked why it wasn't in my file that I had aspertame poisoning.

I told him I wasn't sure but the doctor that treated me for it didn't seem to helpful.

He asked how I was diagnosed.

I explained how I read an article about aspertame poisoning and it had sounded exactly like what I was going through so I stopped all diet sodas and artificial sweeteners immediately.

Within a few days I felt amazing.

Pain was almost gone.

I explained how when I went to that doctor I told him everything and he agreed that I had aspertame poisoning.
I also told my now doctor that the old doctor had said to just stay away from all artificial sugars to let my body detox it out and if I didn't feel better in a month to go back and get detox meds.
My now doctor said that he felt the aspertame poisoning never cleared up and that he felt its been reaking havok this entire time.
He said that I needed to go back next week to follow up and that he was refering me to nurology because I obviously had some damage that needed to be treated.
We've been waiting 3 weeks for insurance to approve an MRI and I finnaly got the call and will be having it done on the 25th.

I feel scared.
I don't want to go through this again yet here I am.
There are days I can barely walk.
But I now I can do this.
Im strong and Ive survived this bout of pain once already.
Im trying to stay positive.

Enjoy it now

"Enjoy it now because you'll miss it when its gone"

How very true this is. Things have been changing for us here..again. As it always seems to do. 

*I started working
*Tomarrow is Lanie's LAST DAY OF KINDERGARTEN!
*Liam's feeds are changing daily depending on what he chooses to eat.
*Liam will be going to preschool next year!!

Theres just alot going on. I miss being home with my babies.
I miss the cuddles.
The cars.
The tea parties,
Nap time.
Free time.

Its only been a week. I'm constantly worrying about everything at home.
Is Liam eating enough?
Drinking enough?
Is Justin compensating with bolus feeds?
Did Lanie do her homework?
Did she have a good day at school?
Did the animals get fed?
Did the dishes or laundry get done?

Its a terrible mess in my head. What I love about working is that it's been so busy that I don't have time to worry unless on break. Don't even ask about the pay because yea it sucks but it's better than nothing. When I'm home I try to enjoy the time with  my family but Im too exhausted even for that. Hopefully my body will adjust soon.

Meanwhile both kids are thriving and doing great. I say Liam is "thriving" because to me every breathe he takes is success. He goes back to the GI soon so we will see! 

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.