Therapy Thursday

Here we go!

The recommended therapy was shaving cream in the bath tub. We put it all over the sides and everywhere! Of course Ty would not touch it for any reason.


Ty had the most serious look and decided we were nuts. It was not a happy bath time.


He never willingly touched it but, he was much happier about getting his hair washed after the shaving cream was gone! Maybe we are on to something here?!

Things that have nothing to do with Ds...but everything to do with Artie!

The wiggles...he loves them! When the song "rolling down the sandhill" is
played he lays down and rolls! Exactly what the song says!

He helps me pick up his toys!

When he wants to finish doing something and I am interrupting, he holds that
index finger up (could he have gotten that from me? LOL) to say "just a minute!"

When it is bedtime, he crawls in my lap and puts his head in my neck and
pretends to snore so I will hold him longer...LOL...and its over when he forgets
hes pretending and looks around to see whats on TV!

When he eats his favorite yogurt, he says "ummmm um!" and shakes his head to the
side grinning.

He loves race cars and football.

Jessie

Ty was infatuatied with Jessie. We all loved Jessie. I know my sister is holding her now.
Jessie was a good dog. She was innocent and loving and only happy when she could snitch a pet or a bite from someones picnic plate and loved chasing a ball, or even a rock if you would just throw it. I can see the intensity in her eyes now. Anyone could hold her attention with an arm raised in mid air. Those eyes said "Throw the ball, throw the ball, throw the ball!"
To get the pet that she deserved you didnt even have to move. She would find your hand and position her head right in your palm so even if you moved by accident she would get a pet. She always understood if you were tired....

Jessie was far too old and had out lived everyones expectations. Tonight was too much.
Each winter we thought it would be her last but she made it to spring and each time we would take a breath of relief. Winters were hard. She hurt from old injuries she didnt deserve. The aches of old age and the pain that would not be eased by OTC meds kept her in her bed. She would sit glassy eyed, tearing up but never uttered a cry. Just let my sister come home and she was dancing.
She began to lose her sight...and maybe her hearing. Her teeth were gone for the most part.
Tonight she cried. My sister took her to the vet at 10pm. They said it was time.

Please hold Jessie for me. Dont let her be scared.

What a surprise!

One of the nurses at the center Ty used to go to before we started home nursing care did this...I thought he forgot and what a suprise it was when he brought it to me! I love it!

A good sense of humor...thats what you need.

I see a sense of humor emerging in Ty. He not only gets the joke sometimes but he can plan and carry out a joke. He sneaks up on people and "gets" them with belly laughs and tickles. He hides and jumps out giggling.

In the bath recently he discovered the fun of soaking the other person. He was simply into everything that day and I followed him into the bath with the camera...


I could tell he was up to something...




There was a idea brewing there...he was delighted and planned it!




He actually drew back to throw and lost the first couple of scoops but then...



There was action! Guess who got wet!?



It was so funny to him! It was clear that the victim just needed a sence of humor!




It was so good, the rascal thought he could do it again!

Just the pix...

Ty signing animals...
Duck

Fish

Pig...the one he really likes...


Just thinking about things...


My cowboy!

Been a while!

Seems like a long time ago. First surgery on the fourth of September and then more sickness. We left for Atlanta in that ambulance with Ty the fourth week in September.

Ty had the bottom half of the VEPTR rod removed due to infection (MSSA) and we were there for a week. It seems like a blur getting home with the PIC line and getting nursing care lined up. We were so overwhelmed with the 24 hour antibiotics.

It was well into the second week of November that the line crimped and they decided to use oral meds.

It was the third week that I broke a thumb nail to the quick. My hand and arm swelled within 24 hours. After antibiotics and another 24 hours the tendon of my arm was infected and infection had reached my chest. I was hospitalized. My orthopedic surgeon was called in and off to surgery I went. It took a week and surgery to get that under control. They removed the infected area from my hand and that took weeks to recover from. They ruled out staph and have no idea what caused it.

The day I got out, my husband was in the other hospital across town.

The day after my husband got home we took Ty to Atlanta to have his staples removed. His orthopedic doc took one look at my thumb and said it was a bacteria common to roses. Sure enough, I had NOT bandaged my broken nail and took the garbage out that day. Walking back I paused for a second to pull some weeds out of the roses.

After everyone got home, we gradually got it together and got some help at home.

I had pulled Ty out of the nursing day care the first of September and we finished the arrangements for in home health care for him. Thank goodness for that. My friends pitched in and helped us with the rest. Do you know that you need your thumb? Mine hurt like crazy because they had removed all the skin!!

Now I still can't bend it but I can type! YAY!

Ty has been on mega powerful antibiotics since the rod was removed. On the first of this month he began running a low grade fever. I have called the doctors again and again about it. Yesterday they called because the bi monthly blood tests show his white blood cells have bottomed out. They are talking bone marrow biopsy. I think it is the meds. I have asked for a change in the meds.

For now we are stuck at home and have to keep lil man away from crowds. We are keeping a low profile.

On the positive side Ty has been granted a wish from the folks at the "Make a wish" foundation. Since we cant go anywhere we have decided to let them have our enclosed double garage and do what ever they want as long as it includes an indoor swing for him since he is so bored and cant get out side like this....




I wanted everyone to know where we have been. We are still here but sore and tired. Hopefully with prayer and endurance things will be better....

Wordless Wednesday is never wordless...

Developing a dependence on Signing Time videos...





Even in his weakest moments, a boy cant go too long without his train!

Resting and reflecting

Ty Christian is resting and playing and I am reflecting on our journey together. It seems I have had so many people recently ask me why I did this, why I took this on. I usually reply with "What?". Now this is not as question as to 'what are you talking about' but a question as to 'what is wrong with you'.
If a child is placed in your arms, whether it be by birth or any other means and that child needs you, would you not be obligated by love to do what ever it takes?
I have to wonder when someone makes a statement or asks a question like that, are they human? Do they have hearts?

Ironic as it is, it seems they are referring to his scoliosis lately and not Down syndrome.

I find the reactions to him changing. They used to be comments on how cute he was as baby and now they are more directed at his many diagnoses. And as odd as it seems they are directed at the "trouble taking care of him". As I said, are they human?

I envision these people as ones who feel that everyone but themselves are dispensable. If they have a cat and don't feel like caring it for it they would just get rid of it...or a dog who barked at the wrong time. Its gone. Everyone and everything there just for their convenience.

At the end of life, when you look back, when you take one last glance at your hands, what can you say you did for others in your life? Can you say you felt truly loved?

As I reflect on this while Ty is lying on the floor playing and healing, I realize that it is love that moves me to give and love that I receive in abundance. It is this love that would make me climb any mountain and overcome any problem to see his smile.

We are home!

Here he is all braced and with his IV pump. This is an interesting get up..most of it is out of his way...sometimes. We had to improvise by taking the stuffing out of monkey for him to pack his pump. What can I say? It works!

Wordless Wednesday

Feeling better?



Oh, I think so!


At least it landed in the bed!

Here, let me disconnect that for you...

Today Ty is helping out. They have so much to do and he knows they are trying to get around to taking that pulse ox off of him...and taking the IV out...and the ace bandage off of his chest!



Of course there are added benefits such as chewing on it...



Looking at the pictures I can see him giving in to the curve. The implant is what keeps his spine stable and straight. Its a little scary to be waiting for the brace to be made and see him move around so much. The upper part of the implant is still attached to his rib cage. He is an active little fellow...and so cute! I did I mention that I love this little guy? He is the most perfect little boy. So full of love and adventure, even when we face obstacles like this!

101 Dalmations Laugh

Ty was waiting for surgery today. He got to watch 101 Dalmations for the frist time.
Have I mentioned that I love his firsts?
Even the opening credits were funny to him. He laughed and giggled and laughed.

Then they came in with the pre op meds. As they took effect he continued to laugh and smile. We obliged him all the way to OR. When I last saw him he was trying to tickle a nurse. Of course she obliged him and giggled with him.

Later the good news. The doctor was able to remove the lower portion of the implant and clean out the incision. He will be in a body brace or removable cast thing. He will have the mean ole PICC line but thats a blessing compared to the number of sticks he suffered in the past week.
Now to heal up enough to go back to OR and have new metal put in. Now comes the painful part but I know each day will be better for now. We are on the down side.
Thanks to everyone for prayers...thank you for listening to me.

Still here

Ty is resting here at the hospital.

He came home sick last week. As soon as he came in the door I knew. I my reaction was to get him to the emergency room.

After consulting with doctors we found that it was possibly the flu...can you believe I was thankful?

By Wednesday his ped...the most wonderful one in the world...said no, get him to ER.

Long story short. From our home town ER to big city ER by ambulance. And 19 hours later we are admitted.

The incision began leaking clear fluid..on a gauze it was slightly yellow. It continues to leak. A Wound Vac was applied and the research began.

It seems the infection after each incision comes out because it was never fully conqured. This time it is bad.

Many tests and cultures later we find it is the same MSSA infection as before and before that and so on.

Today it was determined that he will go into OR and have the incision cleaned. They will possibly remove the hardware for recovery.

A better day...

Someone woke up with all smiles today!

Good news on the cultures and more energy than ever! Could it be from a weeks rest while mommy was watching over him?

So far the trip back into OR is postphoned and the day is brighter. The wound vac is still there and IV meds but we can see the light at the end of the tunnel!

He is feeling much better. Thanks for all the love being sent his way.

What is Ds?

Once again Mr. Ty is in the hospital. We are praying for a turn around.

Once again I thnk "if only it were just Down syndrome".

With all of the medical issues he has that are unrelated to Down syndrome I want to tell every parent, every doctor, anyone who will listen and those like the good Not-practicing Dr Amy who doesn't listen, that on a scale of what measures a child, Down syndrome is nothing.

Why do they measure a child anyway? Who determines if a child is worthy of life?

Would I abort him becasue he has scoliosis? OF COURSE NOT. Yet prenatal testing shows this. It shows the thoratic insuffency and the compromised heart. Is this a burden? No...I love him. Am I sad about it? Crying now.

Ds is a piece of cake. Ds is nothing compared to your child laying there with an implant that enables him keep a lung expanded. Ds is a piece of cake and a walk in the park compared to the frequent surgeries with infections and wounds that wont close. Fevers and pain, long sleepless nights and knowing you have to do this again in 6 months.

What is Ds to me? A trait that makes him who he is. His beautiful eyes, beautiful face and fingers and toes. Does it stop him from growing, exploring, finding joy and being a joy to everyone? No...But what stops him? Robs him of his smile? Brings tears, more tears than a 3 year old should have to cry from pain? Scoliosis.

So when a doctor says Down syndrome, that is nothing on the scale of measuring a child.
If only it were just Down syndrome. If only.

Wordless Wednesday...I know my ABC's...ask me and see!

Ms Amy

I decided to post my comment to Amy here. It is my hope that every parent is has an opportunity to know the facts and access to information that is accurate.

The fact is that everyone has a choice. Not everyone has accurate knowledge. So what do most people do? They look for information to base their choice on.
You, good Doctor, who is not in practice, are not providing accurate knowledge according to your posts. Now, I don’t know you but I know the influence you, with the title doctor, would have over an average woman who has been told she is going to have a child with Ds. Not that you would say "hey your best bet is to abort and try again". But what are you saying with this blog? Your thoughts, your view and with that you influence people you don’t even see.
The parents of children with Ds state that most of them were not given accurate knowledge about Ds when they needed it. It is a fact that historically these children have been discarded at birth by doctors advice and placed in institutions, not educated or even given proper medical care. Doctors have historically presented the opinion that here is no hope for these children. They are concerned you are continuing that tradition instead of acknowledging current facts they present. There is hope. If you are not aware of what these children can accomplish and contribute then you need to give a ear.

Again...each person has a choice. Most people seek information to base the choice on.

Not one parent here wants to control another parents choice...the parents posting here
only make sure it is an informed choice.

Dr. Amy Tuteur

Is not a practicing doctor. Why? What conclusions can we draw from that?

She is very opinionated and loves to draw controversy to build revenue. The good not-a-doctor is putting a spotlight on DS in order to plump her revenues.

Who is she to say my child is a burden? Who is she to look across the masses and state, with no personal experience, all is doom and gloom for my child and others like him. She has no personal experience. Only sarcastic cruel comments.

I have no motive save the self esteem and future of my child. The future of children. Children that she as an OB (she claims but does not practice) deems unfit for life.

Of the monsters in the world, she is the most frightening. What expectant mother seeking knowledge will sleep thinking Amy is objective and honest? How many mothers will take the lives of their children because of belief in what she says?

Amy does not allow parents of children with Ds any respect.
Of all the narrow minded, hard hearted people I have met, she is the worst. I certianly wouldnt want her touching a the belly of an expectant mom to examine a child, typical or not. Why, she might feel extermination is best for the child!

Where do you draw the line? My son smiles at me and I hug him a little closer. My beautiful son who would have been one chosen for extermination by the good Doctor.

How we got to here...pre op and post op

This makes me cry. He takes it a lot better than I do. Or so it seems. I cringe when we talk about surgery coming up.
This time he recongnized the hospital, the nurse and the tiny pre op room. Even Elmo didnt soothe him. I rocked him and we waited.


Then came the first dose to relax him. It was a relief to see him start to give in and anxiety slip away. I always worry about how much of what ever it takes for him to be asleep, totally asleep in OR. I know they are professional and make sure he is out completely but I worry. He seems to always have nightmares after surgery. I rocked him as he began to let go.


Anxiety and deep breaths and finally it was done. It took me days to write this. We have been cuddled and quietly resting for a week now. Today we are better. We are home and on the road to healing. Today it is past and we are playing and laughing again. The scars are there. What would you do to keep your child alive for another year? For another 10 years? This is what I do. I make a deal every six months and pray every day.

They were able to reseat the hook at the base of his spine. There was no need to go all the way down to the pelvic bone to attach. Grateful for that. Very grateful. Prayer works wonders...The rod has one more lengthening and then it is time to replace it. One more time and then we go back for a replacement. What would you do to keep breathing? This is what we do.

The day before...

We drove up to Atlanta and went to the zoo late in the day. It was almost closing time on a weekday so it was very low key. Not many people.

Ty saw his first real live giraffe.

He had played with his toy giraffe, he could pick one out in a picture and he could sign giraffe but I dont think he was prepared for the size of a giraffe. Even sitting on daddys back they were very tall!

He really enjoyed the animals and loved the elephant too. He enjoyed the cool over hanging tree branches and watching the animals. We talked about each one and signed each ones name.

A beautiful day

How can such a beautiful day be wordless Wednesday?

It was such fun playing today. Lots of energy and giggles! I am sure the squeals were heard around the neighborhood!
He loves to throw everything in the bouncy room! Everything! The mom in me tries to limit it to pillows and balls...LOL.

His deepest belly laughs, his loudest squeals come from releasing some of the air pressure so that all the balls come toward him as he drops down and "swims" in the sea of balls!



Now there is such a calm over the house. My lil man cuddled in my lap as I try to type. Its nap time. Rest lil man. Tomorrow we go to the zoo or the kids museum and find some fun.
Friday and the hospital are a million years away...lets not think about it.

Wordless Wednesday: love to rock!

No Show?

Our nurse was a "no show" yesterday! Oh no! Good thing there was not an appointment or something!

I have to say it was a wonderful day. We sailed through the day with such peace. I had a nice evening to top it off. Lil man was calm and cooperated with lots of smiles and giggles. Dad even commented.

So that means we dont even need a nurse, right?

Yeah, just wait until surgery next week and ask me. I am sure I will beg, plead, fall on my knees and pull at the hem of her scrubs until she helps. Sometimes you just need another set of eyes to confirm or ease your worries. And to repeat this every 6 months is not a happy thing.

We actually went over schedule this time. Surgery was due in June. We got and extra two months of "no surgery" time. Although there were issues with his health, some bad ones, putting that incision off had a kind of "vacation" feel to it.

Maybe I can beg for an extension...say every 8 months? That would streach us up to next April!

I sort of want to take him and run. I know I cant. I cant stop this.

But, hey what if we took off to parts unknow and were a "no show" for surgery?

Will our new friend keep up?

Will this scare off a nurse?

Daily Schedule
Always be aware of pain issues. Learn the signs!

6:00 AM Oral Therapy
Oral therapy consists of gum massage and chewing exercises.
Meds Prevacid/miralax/pain meds
Feeding and Dressing
Feeding consists of wet ground and self feeding exercises/tube feeding
Personal Care teaching, wash hands, brushing teeth, make bed and clean up

Utilize color train and choose color of day

7:00AM Breathing treatments
nebulizer treatments with pulmicort, albuterol as needed while utilizing Baby Can Read Vidoes and reading time

8:00AM School Time
Puzzles with focus on completing task, Letters and Phonics, Numbers incorporating OT.
BJU
Follow curriculum or Special Ed teacher visit. Independent completion of task goal/ increase attending skills
Ty moves through the curriculm in 15 minutes increments with breaks.

9:00AM Various Therapist visits

9:30AM Creative Play
Sand and Water, Soft Touch, blocks, paint, animals, Play dough Focus on OT, sensory and cognitive development according to recent instructions from supporting staff. Incorporate color of the day and animal of the week.

9:45AM Water 4 ounces of water

10:00AM Outing and Snack
Summer: Usually cool in the AM so a walk, visit to zoo, Park (two days a week) or back yard play focus on elements, surroundings, social skills and communication also incorporating PT
Use maginifing glass to examine bugs, plants and explore.

Winter: visit to Kids museum, local Aquarium or Mall for walk (social skills in public)

11:30AM Personal Care and Lunch
Meds and nebulizer as needed
teaching wash hands and face and clean up

Oral therapy: consists of gum massage and chewing exercises.

Feeding / table play Feeding consists of wet ground and self feeding exercises/tube feeding/brush teeth

12:00N Nap Time
Audio with classical music or Love and Learning
Water 4 ounces of water

1:30pm Wake up soothing music, interactive play time with focus on transition to activities

2:00PM Outing and Snack
Winter: If weather permits Walk, visit to zoo, Park (two days a week) or back yard play with focus on elements, surroundings, social skills and communication also incorporating PT

Summer: If too hot for TLSO brace, local museum or library, local Aquarium or Mall

3:30PM Personal care
teaching wash hands, face
Water 4 ounces water by tube

4:00PM independent free play
encourging free choice incorporating OT and PT
Use V tech or leap frog electronics, musical insturments, bubbles. Offer activities such as bouncy room, swing, rocking horse.

5:00pm Oral Therapy Oral therapy consists of gum massage and chewing exercises.
Meds Prevacid/miralax/pain meds
Signing Times Sign Language

6:00pm Dinner
Feeding consists of wet ground and self feeding exercises/tube feeding

7:00pm Breathing Treatments
nebulizer treatments with pulmicort, albuterol as needed while utilizing
Baby can read vidoes and reading time

7:30PM Personal Care
teaching, Bath time, brushing teeth, prepare bed and clean up

8:00pm Bed Time

Now...the index~
Oral Therapy
Oral Therapy consists of
1. Gum massages using the index finger. Starting at the upper right gum, using a song or counting to help him understand it is a limited exercise, massage across the gums moving to the front and to the left upper gum. Repeat on bottom gum. Rest and repeat exercise at least twice.
2. Chewing exercises using tubing or a chewy toy. Placing the tubing between his back teeth, encourage Ty to chew with steady firm bites. Pace the chewing to a song or counting. Encourage him to chew 10 times on the right side and then move to the left side repeating the exercise. Rest, allowing him to hold a favorite small toy, then tell him “it’s my turn now” and repeat the exercise.
3. Using a Z Vibe, place it in his mouth and use to stimulate cheeks and allow him to explore. Encourage him to move it with his tongue.

Meds
listed

TLSO Brace
Must be worn 23 hours out of the day!!!

Feeding
Feeding consists of up to 4 bottles of pediasure per day by tube. He can take wet ground consistency by mouth if he is not congested or coughing. Ty has silent aspiration. His recent swallow study indicates he aspirates on anything that is not pudding thick. He has aspiration pneumonia twice in the past 7 months and it is recommended that he only have up to 1 oz of honey thick at beginning of meal and then pudding thick for the remainder due to fatigue. Ty is tube fed to take in the extra calories so his metabolism can keep up with healing required for frequent surgery.

Dressing
Ty is encouraged to explore putting on his clothes and to assist in dressing himself

Personal Care
This includes life skills of washing hands and face, brushing teeth and hair and picking up pillows and toys. Currently we are utilizing hand over hand to teach him but also allow him to try himself. We focus on a few tasks at the time.

Breathing Treatments
Using a nebulizer, Ty receives two Pulmicort treatments per day. He also receives up to 6 Albutrol treatments per day.

BJU
Curriculum designed by Bob Jones University and modified for children with Down syndrome.

Creative Play
Activity to mimic life and incorporate OT activities such as playing with textures, using play dough and blocks to create items, using toy animals and stuffed animals to interact.

Water intake
Needed for proper hydration. By tube because aspiration prevents Ty from drinking more than a sip at the time.

Outing
Needed for social interaction. It is necessary that Ty come to know and interact with others in local area in different settings. Encourage proper behavior in public settings. Less populated settings are necessary prior to surgery due to reduced immune system.

Nap Time
At least 1 ½ hours at mid day. If he sleeps more, he does not well sleep a night. Exceptions are when he is sick or had recent surgery.

Wake up
Transition from nap to play time is hard for Ty

Baby Can Read,Love and learning, Signing Times
Videos and books used for entertainment and beneficial for education

Turning the corner

Its too early to be this happy!

As I sit here thinking about a schedule for my hero I recongnize that we are turning a corner in his care.

He is growing fast and this schedule has to be for him, to create opportunites for him. Social, learning and communication opportunities.

In some ways, I think taking him out of pediatira is limiting him. In other ways, I know it is opening up a new world of learning and growth.

I dont know where to begin but it will be created and posted today!


Well the doctor said wear the TLSO brace 23 hours out of the day...he just didnt say how!

Transitions and the task at hand

Tomorrow we go to see a new ST. Not that I dont love the one we have but we have her as part of the medical daycare program. As the medical daycare program goes, so does she. Awww. Too bad.

I have found sources for his therapy scattered about. I do want to check out the few that I have options about.

The paperwork and letter of medical necessity has been sent. I am waiting to meet some nurses and meantime it will be just me and Artie.

In one week and two days we start our time at home together.
We have a wonderful week before surgery. I have a few friends who are RN's that have kindly offered their skilled assistance should I need escape or time alone. I doubt it. I am so tickled to have him home. Now ask me three weeks from now and see what I say, LOL!

His doc has been kind in providing excuses for me to keep him home...soon I wont have to call so much.

When I go out to pull weeds, he is right by my side. When I clean a room, he is my entertainment and sidekick. When I eat lunch, he does too...so what do I need other than someone else to listen to those precious lungs and check him out? Ok, maybe a run to the Doc's office or a meeting or two.

But all and all, next week is our transistion to home to get ready for surgery. Post op, we will hang out together for a week or so too.

And hopefully by then the transtition to home nursing will be complete. I so look forward to that.

We will stay on our 'home school' schedule through recovery because he loves it.

As far as public school. The special education teacher wants to come out to our house once a week and wants the school provided therapies to come too. I am not sure. I dont want to be tied to the school and get into legal hassles. We will see.

There are a lot of transitions to be made here. I think we are so ready!

Professional Photographer Angela Calderon

Photographer Angela Calderon came over to the Ronald McDonald house in April.

We were hot and sweaty after cleaning our room and packing for the long trip home.

Didnt she do beautiful work?

Days fading together

As I rush around trying to keep our home open to foster children (yup you have to work at it if you intend to really help children) and keep Artie safe for upcoming surgery (now that takes work!) the days have faded together, sort of...one becoming another before I have time to blink.

There are classes to take, inspections and physicals. For Artie there are pre op visits, juicing the right veggies for the right nutrients he needs, and preparing the house for down time to make recovery easier for him. There is caring for my brother and helping him get on his feet. Thank goodness for my dearest husband and all he does to help.

In the flurry of business, the recent xrays were alarming. The hook attachment at the base of his spine is working its way loose. The heat is opressive and it is so hard to keep that TLSO brace on all the time. Here at home we keep it very cool for him. When he goes to the 'medical daycare' center I suspect the brace comes off. I go by often and check on him. I worry about how they pick him up and how they pull him along by the arms. He pulls back. He does the "drop and flop" and at 30 pounds he is not easy to pick up correctly!

I have a hard time trusting...

Another alarming incident occured when I dropped in for a visit...I was sitting in the room in a toddler chair (was I mistaken for one of the children?) and the conversation went this way:

Nurse (new person who is tube feeding a child): I am going over to my daughters school and observe circle time and see what I can implement here for our kids! I spoke to the teacher and she said I was welcome.

Now I am feeling really good at this point!!

CNA (long time person who is picking up the room): I dont know why you are doing that. Its a waste of time. These kids arent going to do anything in circle time. Why do you think Other Nurse quit trying to work with them? They arent like normal kids. They arent going to sit down for anything.

GRRRRRR! Did I growl from my corner?

Nurse (new person who is setting fed child down): Yeah I guess you are right. I dont know. I think we could do some of it.

CNA (who seems to hate her job): You'll see. And dont take offense if I start using a mask in here. I dont want to catch swine flu. I am gonna take care of myself. I dont know where these kids have been.

Me (clearing my throat, speaking up from the corner to both of them): Well I am going, and I will take Artie with me now. (To the nurse)Ms CNA is having a bad day and is unhappy with her job.

I got up and went to the supply cabinet and took all of his tube feeding supplies, milk and diapers. I asked for his lunch that I had made. I was trembling, I was angry. Over emotional, trust gone.

I went on my way. I had to pass by the acting directors office to sign him out...she asked if I was taking him. I explained the conversation in the room and added:

(Me to The Acting Director:)I can take Artie to the kids museum and have circle time. And dont take offense, I dont know what is said in front of my child when I am not here so I can only imagine it is worse since this is what is said in front of him when I AM here. I am taking him with me.

There was a scamble. Apologies forthcoming. Meetings with employees. Reasoning with mom. Notes made. The nurse came out and asked me if I was going to be there a little while longer because as we were working this out, she would love to have Artie come back in the room. She was going to have all the children finger paint. She assured me the CNA would not be back in there today.

We are shifting our focus to home health care and home schooling. He has done well and responded to what I have taught him with our curriculum. I know for every action there is a reaction and I am sure there will be surprises along the way with this change. I think inspite of all I have to do, the busy days and hectic schedule, he will do better at home. I know he will.

These days that so busy, these days that are fading together, these are the days of his toddlerhood and the time for him to become the person he will be. I cannot let them slip by without having more of an imput in his life.

When my child makes me proud...and sad

Yesterday Artie made me so proud.
First of all, he took his own bookbag to the bus stop. As I was gathering up the phone, my water and myself he grabbed his bookbag. Now, remember, he has back issues so this is not an easy thing for him to do. He carried it most of the way. When he faltered, stumbled and started again, I took hold and helped.
He looked up and smiled and we continued.
That went deep into my heart.
He carried it and I just helped with the weight. He placed it next to the mail box, like we do every morning, and we continued our morning ritual of looking at the trees and trying to spot birds.

It was a beautiful morning. He was getting too warm in that TLSO brace but he kept the cheerful attitude up. Humidity in the land locked south is something oppressive at times.
We practiced mailing a letter. Open the mailbox, put the letter in, close the mailbox, raise the flag and cheer for the letter leaving. Raising his arms up and going through the motions is not easy for him. His back makes it difficult. He loves to mail letters in the morning and check the mail in the evenings. He is so proud to bring the mail to the house. He loves to see the mailman come by even more. Anything with wheels.
When we saw the bus in the distance, we sang our moring song, 'wheels on the bus', and picked up the bookbag.
In the past, I have had to hand him in the bus by lifting him over the steep steps and into the nurses arms. He had to be carried down the narrow isle and placed in his seat and belted in.
This morning he wiggled as I picked him up so I stood him on the bottom step. He tried to go up the steps himself. Of course I helped lift him from step to step. It was not easy for him to lift his leg that high with the brace on. Everyone on the bus was patient. When he reached the floor of the bus he stopped a moment, acknowledged the driver with a beaming smile, and then started to walk to his seat. The nurse stepped in and reached to pick him up. I asked her to wait a moment. He had to twist his trunk slightly to get down the isle. Not an easy thing to do for him. Everyone cheered as he grinned. When he reached his seat he started climbing in. At the point where I knew he was struggling becasue of the bulky brace, I said "now help him" and she turned him to sit in the carseat. He was grinning and the kids were cheering. I stood there with my hand over my mouth, afraid to say anything else. Afraid the moment would pass too soon.
I was so proud of him. Inspite of the steep steps the bulky brace and narrow isle, inspite of the higher than average seat because of the special carseat he rides in, he is now going to do it himself. Independence.
I was so proud of him...and yet sad. Independence is beautiful, yet, that last sneak hug I used to get as I handed him in was missing. Its moments like these that I know he is growing and getting ready for the world, a world I wish I could protect him from.

I want to protect him from people like the ones at 'pray for Trig' who look at Ds as defective and that it makes him less than he is when it IS him. People who, through their own self righteous attitude believe he needs to be different down to his very core. And the ones who for their own selfish entertainment use Ds as a tool to hurt people by posing as something they are not. My beautiful boy.

I want to protect him from the other end of the twisted specturm. The bitter, cruel people who resent him and say terrible things that are not true. The ones who feel he should have never been born. My beautiful boy.

My hope is that he will grow and become one who will have a voice, one who will have a voice for the voiceless. He is growing and it makes me proud...and sad.

Someday he will speak for himself and others. My hope for him is to grow strong.

My sorrow is that my baby is growing up and must meet these challenges. Easy is not going to be part of it. Why? Because others limit him and devalue his life.

So mama bear that I am, this is hard for me.

MIA!

I have been missing in action! My time is divided. My heart is sore.

My brother is terminal and requiring assistance, which I am giving as much as possible. It is heart wrenching.

Artie is missing me and I am missing him...so much. It seems what when I am gone a day and dad cares for him, by the time I am back he has so many new discoveries to show me. I have been missing his day to day life. It was never more aparent than last night after being gone the weekend.

He is talking so much more. He was explaining and signing to me last night. I picked up the words "car","wheels" and "red" as he was signing "me", "car" and "go". What adventure he had on Saturday! He really wanted to share and tried so hard to communicate. I listened intently and responded, encouraging him. What a treasured moment!

I need to be part of his life every day. I really love my boy.

My sweet boy is growing up before my very eyes!

Do I have a job?

Someone asked me if I worked. When they ask this, it generally means a bonifide, get up and go, paycheck "bring the bacon home" type thing.



All I can say is...they should try caring for a 3 three year old cowboy on cough medicine and then ask...

I can sing!

Artie loves the song "head, shoulders, knees and toes" and is delighted to perform for himself!





From the smears on the mirror, I am safe from being roped in to doing a windex commercial unless its the person trying to use the no name brand...hey! but I did use windex!

Horton has a ride!

As you can see, I did get my camera out of the car. I was really watching for a dance with Thing 1 and Thing 2.


Hi Horton, I see you arrived in your usual way!

What can we do, bud?

How about a wild ride? Scared?

Turn around and face your fears! You wanna go to Disney World with me, right?

Whoaaaa! Look at you go!

My turn!

You are gonna catch me right? Thats what BBF's are for right?

Soft landing!!

Thanks dude!

Hey...whats that?

Hey! Is that Elmo?

Another day in the life of Horton.
The wild adventures of a boy and his toys!