Monday, December 31, 2012

updates in blogs

There are three new post tonight, I haven't updated in a week and I didn't want to put them all in one post. The post before the year in review gives the medical update from the metabolic doctor.

Happy New Years!

Happy New Years!  2013 is almost here, and in many parts of the world it is already here.   I don't know what this year will bring, I am trying to be hopeful but I have a lot of reservations.

2012 - Year End Medical Review

We started last year with Matt making fast progress.   In late December Matt showed the first progress he had made after 6 long months of losing skills.  He made progress fast and by late April he was doing pretty good.  We got a new supervisor for PT and she was about to release Matt from PT.  I asked her if we could wait a month because it is the time of year he usually regresses.  When she came back she couldn't believe the changes that had been made.

Matt's regression this year was mild compared to other years, but the areas of trouble were scary.  Matt's feet had never been so bad.  He could barely stand before he got his braces.  He was gripping with his toes to try to keep his balance.  He was walking on the insides of his feet.  His gait was all around messed up.  The braces helped a lot but there was still a lot of muscle weakness all over.

His core lost a lot of strength   This was a first.  It got to the point where he couldn't carry his beloved weighted monkey on his back for more than 2 minutes. - it was a 2 pound weight!

By late summer swallowing issues had started and by early fall Matt was diagnosed with dysphagia and was changed to only thickened liquids and no complex foods.  This was devastating.  After a short time on thickened liquids we decided a feeding tube would be the best route.

There was a long wait to get his feeding tube (or at least it felt long)  during that time Matt started having a very bad tic.  I hoped it was caused by lack of hydration and nutrition and the feeding tube would fix it.  

On Sept 18 I got a call.  There was an opening in the schedule and Matt could have surgery the next morning.  Sept 19, Matt had his g-tube placed, a nissan fuduplication, and a muscle biopsy.  The over all recovery went well.  It took a while for Matt to adjust to eating and at times still has issues but over all he has done well since surgery. 

The fall and start of winter have been pretty steady.  The tics practically went away after the tube was placed and he gained 2 pounds.  He is now at the perfect weight for his height and looks so much better.  

The last two weeks -  The week before Christmas Matt got sick, I took him to he doctor and he was dx with the flu.  The doctor prescribed terraflu and it worked well.  The day we saw the doctor Matt slept over 20 hours.  The next day he was still sick but much better.  Then a few days later he crashed again.  He is still sick.  We saw the doctor last friday and they gave him an antibiotic to see if it would help.  So far it hasn't.  Matt is still so sick. Today he slept a lot of the day, and he all over doesn't feel well. 

Matt has always been so fast to jump back after sickness and even after surgery.  This is the first time that he hasn't bounced back.  Two weeks of being sick and feeling so bad is hard to see.   I wonder if this is the next phase of whatever we are dealing with. I know so far we have been lucky that he has been able to enjoy play grounds and other kids with little fear of getting sick and bouncing back after sickness.  I hope that this phase isn't over.  

We did find out that we can do fire works at our house this is an exciting way to bring in the new year!  Matt has enjoyed them even through sickness.  I just hope going outside isn't going to prolong this sickness. 

The Day after Christmas

December 26th, was our appointment with Matt's metabolic doctor in Austin.  Being so close to Christmas I didn't let myself think or worry about the appointment.
News from the appt.

All of the results from the muscle biopsy were in.

In two areas of Matt's mitochondria there was an excess amount.  I think it was complex 2 and 4.  Even though there was a surplus of mitochondria there was not enough to diagnose him with mito.  It does tell the doctor that whatever going on is muscular not just neurological.

As a side note he is going to test Matt for Addison's disease.  I don't think it is going to lead us anywhere but it is the first thing Matt has ever been tested for that is treatable.

The next step...

We are pretty much at a stand still.  The only thing really left right now is Whole Genome Sequencing.   The problem with that is we have medicaid and as of right now medicaid is not paying for it.  The doctor is hoping that will change in the next year.  So as of now we are waiting for the preliminary test results results for Addison's disease which we should get next week to see if we need to proceed.  Then we will meet with the genetic doctor to talk about the whole genome sequencing.

I am worried we will run into a problem with the testing.  When they do whole genome sequencing they like to have blood from three people, mom, dad, and child.  It will be impossible for us to get blood from dad.  I really hope that doesn't stop us from being able to get this testing done.

Until the testing is approved we wait.


Christmas was great!  Matt loved his presents and has played with almost all of them every day since that hasn't been filled with doctors appointments.  He was sick for Christmas but it didn't stop him from having a good time.
His favorite toys were:

Sonic Remote Control Car

Penguin Pillowpet Dreamlites

Stock Car Set

Paper Jams Guitar  (It plays Jesus loves me, Pirates who don't do anything,  God is bigger than the boogie man)

Doctors kit  - He hadn't asked for one, but I knew he wanted one, on Christmas eve when we wrote our letter to Santa he asked for one, I told him Santa had already loaded his sleigh so it was too late to change his mind.
(No picture)
Lalaloopsy dolls with pets.
This one came with dinosaur pajamas. 

The day itself was nice and relaxing.  We split opening presents into sessions.  This year he was really into opening presents, he finally outgrew enjoying each one and couldn't wait to see what was in the next one.  We also introduced Matt to Home Alone, he LOVES it!  The cheesier the better so he LOVED LOVED LOVED Home alone 3.

Monday, December 24, 2012

Merry Christmas to all...

...and to all a good night.

Sunday, December 23, 2012

And a crash....

When you have a child that get's tired easy, but can't put them selves to sleep it is easy to misjudge how tired they are.  Tonight after  I gave Matt his meds, we went straight to the bathtub.  With in a minute in the bathtub he was asleep.  He usually lays down in the water, at first I just thought he was being silly.  I was really surprised to see he was out.   I drained the water, bathed and rinsed him off all while he was asleep.  The dressed him and put him in bed.

Christmas eve's eve.

I can't believe Christmas is already upon us.  This time of year goes by so fast!  I have been prepared long in advance and I have a lot of excitement for Christmas day.  At the same time I am sad the holiday season is coming to an end.

It is disappointing this year that Christmas has been so hot.  When it is 80 degrees it doesn't feel like Christmas,  I could never live in California or Florida where it is always that hot at Christmas.

Tomorrow is Christmas Eve!  I am excited!  We are going to have a mini celebration at my house.  I can't wait to have friends over and celebrate the day.  I am looking forward to the yummy food that has been in the house for weeks that we finally get to enjoy!

I can't wait to put out all the presents!  I can't wait for Christmas morning.  Seeing Matt's face.  Every year in the past he has loved playing with the presents.  He isn't the kind of kid that can't wait to see what is in the packages, he wants to play with the ones that are already out.  I wonder if this will be the year he is more interested in unwrapping presents.  I am excited this year we are staying home for Christmas so we can celebrate at his pace.  His older cousin is much more typical and rushes through present time.  I am glad that this year there will be no rush.

I am so excited to be home for Christmas this year.  I hope that it is as magical as I am wanting.

I hope all of you have a wonderful Christmas!  Matt is the age that I know the Christmases I am having now are the ones I will cherish the most for the rest of my life.  I want to make the most of it!

Today, this poem started going through my head.  I plan to share it with Matt tonight.  He probably won't understand the significance, but  I thought I would share it here as well.  I love it.  Christmas seems like such a good time to share it.  

He placed one scoop of clay upon another until a form lay lifeless on the ground.All of the Garden's inhabitants paused to witness the event. Hawks hovered. Giraffes stretched. Trees bowed. Butterflies paused on petals and watched.
"You will love Me, nature," God said. "I made you that way. You will obey Me, universe. For you were designed to do so. You will reflect My glory, skies, for that is how you were created. But this one will be like Me. This one will be able to choose."
All were silent as the Creator reached into Himself and removed something yet unseen. A seed. "It's called 'choice.' The seed of choice."
Creation stood in silence and gazed upon the lifeless form.
An angel spoke, "But what if he..."
"What if he chooses not to love?" the Creator finished. "Come, I will show you."
Unbound by today, God and the angel walked into the realm of tomorrow.
"There, see the fruit of the seed of choice, both the sweet and the bitter."
The angel gasped at what he saw. Spontaneous love. Voluntary devotion. Chosen tenderness. Never had he seen anything like these. He felt the love of  Adam. He heard the joy of Eve and her daughters. He saw the food and the burdens shared. He absorbed the kindness and marveled at the warmth.
"Heaven has never seen such beauty, my Lord. Truly, this is Thy greatest creation."
"Ah, but you've only seen the sweet. Now witness the bitter."
A stench enveloped the pair. The angel turned in horror and proclaimed, "What is it?"
The Creator only spoke one word: "Selfishness."
The angel stood speechless as they passed through centuries of repugnance. Never had he seen such filth. Rotten hearts. Ruptured promises. Forgotten loyalties. Children of the creation wandering blindly in lonely labyrinths.
"This is the result of choice?" the angel asked.
"They will forget Thee?"
"They will reject Thee?"
"They will never come back?"
"Some will. Most won't."
"What will it take to make them listen?"
The Creator walked on in time. A tree that would be fashioned into a cradle. Even then he could smell that hay that would surround him.
With another step into the future, he paused before another tree. It stood alone, a stubborn ruler of a bald hill. The trunk was thick, and the wood strong. Soon it would be cut. Soon it would be mounted on the stony brow of another hill. And soon He would be hung on it.
He felt the wood rub against a back He did not yet wear.
"Will you go down there?" the angel asked.
"I will."
"Is there no other way?"
"There is not."
"Wouldn't it be easier not to plant the seed? Wouldn't it be easier to not give the choice?"
"It would," the Creator spoke slowly. "But to remove the choice is to remove the love."
He looked around the hill and foresaw a scene. Three figures hung on three crosses. Arms spread. Heads fallen forward. They moaned with the wind.
Men clad in soldier's garb sat on the ground near the trio. They played games in the dirt and laughed.
Men clad in religion stood off to one side. They smiled. Arrogant, cocky. They had protected God, they thought, by killing this false one.
Women clad in sorrow huddled at the foot of the hill. Speechless. Faces tear streaked. Eyes downward. One put her arm around another and tried to lead her away. She wouldn't leave. "I will stay," she said softly. "I will stay."
All heaven stood to fight. All nature rose to rescue. All eternity poised to protect. But the Creator gave no command.
"It must be done...," he said, and withdrew.
But as he stepped back in time, He heard the cry that He would someday scream: "My God, my God, why have you forsaken me?" He wrenched at tomorrow's agony.
The angel spoke again. "It would be less painful..."
The Creator interrupted softly. "But it wouldn't be love."
They stepped into the Garden again. The Maker looked earnestly at the clay creation. A monsoon of love swelled up within Him. He had died for the creation before he had made him. God's form bent over the sculptured face and breathed. Dust stirred on the lips of the new one. The chest rose, cracking the red mud. The cheeks fleshened. A finger moved. And an eye opened.
But more incredible than the moving of the flesh was the stirring of the spirit. Those who could see the unseen gasped.
Perhaps it was the wind who said it first. Perhaps what the star saw that moment it what has made it blink ever since. Maybe it was left to an angel to whisper it:
"It looks appears so much is Him!"
The angel wasn't speaking of the face, the features, of the body. He was looking inside - at the soul.
"It's eternal!" gasped another.
Within the man, God had placed a divine seed. A seed of his self. The God of might had created earth's mightiest. The Creator had created, not a creature, but another creator. And the One who had chosen to love had created one who could love in return.
Now it's our choice.
Yes, the Lord knew about the cross, when he created the world, He knew about it when he formed Adam, He knew about it when the ark was built, and He knew about it at the manger. Yet he gave us a choice to follow Him or self.

Max Lucado

Tuesday, December 18, 2012

Day of Silence...

I have seen on a lot of blogs that today is a day of silence to show our support to the lost lives in this horrible tragedy.  I love and cherish my son every single day.  I know already that I am not promised tomorrow and that I see him as my biggest blessing.    I am heartbroken for everyone that lost a child or a loved one in the shooting.

There are a lot of days that I am silent, maybe I am just too busy with my son or other things to get online or too tired to try to write something.  Today, I don't think it honors their memories to take a day of silence.  I think today should be a day to speak out.

Something needs to be done, I don't believe we need stricter gun laws.  Guns have been a part of American history since it's beginning.  We have de-humanized life.  We need to get back to seeing people.

We don't go to the bank as often, we have drive through ATMs, we pay at the gas pump, we even have self check out at many stores.  We even can shop online for almost every need.  When we call a business it is hard to find a person to talk to.

When I was a child life didn't happen with out others in it.  We went to the bank drive through often, we got candy from the tellers.  We had to go inside to pay for gas.  We never bought anything with out seeing people.  Giving them money.  Every time we picked up a phone there was a human on the other end.  I think it taught us to value everyone because we needed them.

Not only have we taken humanity out of life, we have worked hard to take God out of life.  There is no prayer in school.  We worry so much about offending others, stores who make millions of dollars on Christmas are too fearful of offending people they don't want to put Merry Christmas on their signs.

Something needs to be done.  I am very scared to see what is going to happen to the next generation if things don't change.   I love technology, I love the internet, I have learned so much, but is it worth it?  Can we have the technology, but go back to needing people?

Instead of stricter gun laws, can we have stricter laws to put humans back in our day to day lives?

Monday, December 10, 2012

Someone blessed us tonight.

     This year I decided I was going to enjoy Christmas, and so far I have been enjoying the season.  Matt and I are having lots of fun preparing.  Almost all the gifts are bought and wrapped.  I have 2 more gifts to buy.  I also want to get everything done on my Christmas "bucket list".
     So tonight we headed to the riverwalk to eat dinner and enjoy the lights.  I have tried to do this three times before with my husband, but every time something happened that made it impossible.  So tonight he was working and I decided it would be fun to make it a Mother-Son date night, so off we went.
    We went to Rita's on the River, I had a living social deal for it.  Even though it was cold we sat on the heated patio.  We watched the barges go down the river and we saw ducks.  Matt even got to feed the ducks which he LOVED!!!!  When we were finishing I was getting a little frustrated that the bill wasn't coming.  I got out my wallet and the coupon and when the waitress came by our table I tried to hand it to her saying "we haven't gotten our bill yet"  She said I know, someone has paid for it.  I was shocked!  I didn't know what to say or do.  It was so sweet of someone.  I felt kind of bad.   I didn't expect it at all.  I feel bad I didn't react better.  I was so shocked.  I also didn't have much cash so I was worried how I was going to leave a tip.
   I think it might have been the very nice family beside me.  I wanted to ask them, but I didn't know if I should.  The family beside us was very nice.  They had 8 kids all almost grown.  The youngest two were with them and they were both teenagers.  If I could do it again, I would have asked if they had paid for it.  I really would have loved to say thank you and give them a hug.  I have heard about things like this happening to other people but I never thought I would be on the receiving end.   I feel incredibly blessed.  I definitely want to pay it forward soon.    I want to bless someone else.   I wish I could tell whoever it is Thank you.

At the dinner table. 

Matt feeding the ducks. 

The lights downtown were beautiful! 

A little better picture. 

Three funny things that Matt said tonight.  When I told him we were going downtown to eat and see the lights he asked if is best friend was going with us.  I told him no, and he was disappointed. I said "you don't want to go with me" he said "no"  I asked him "what?" then he said "just kidding"  Funny boy!

At dinner a bird came around looking for food.  I threw down a chip and he took a small bite and walked away.  I told Matt I guess he wasn't hungry and Matt told me, "Birds don't eat chips, they eat seeds!!!" BA HA HA HA!!!!!

On the way home I was reviewing the truth in tinsel lessons with him.  Tonight we were making a pillow to go on the tree to represent Joseph's dream.  I asked him if he remembered who Joseph was, he said "Yes"  I said "who" and he said "my grandfather?"  I just started laughing, Matt doesn't know this but his Grandfather's name is Joe.

Sunday, December 9, 2012

Good Surprise

     On Friday I decided to take Matt to Morgan's Wonderland's Christmas in the park.  I was planning on going Saturday but then  remembered that we had a birthday party to go to.  It was last minute so as I got Matt ready to go I told him we were going to a fun surprise.  He guessed the whole way there, he did mention Morgan's but I told him I wasn't going to tell him and he would have to see.  As we turned into the parking lot he questioned if that was where  we were going and I told him yes.  He was excited!  We had a good time.  He got to see Santa again which he loves, but this time it was nicer because I didn't mind asking them if I could take his feeding backpack off first, and they all understood what his communication device was.  It was a nice trip.  On the way home I asked him if Morgan's Wonderland was a good surprise.  At first he didn't answer so I wasn't sure if he was too tired to answer, but I asked him again and he said.  "It was a good surprise, but Chuck E. Cheese would have been a great surprise!  He cracks me up!  We don't go to Chuck E Cheese much anymore, but we do try to go once a month or two.

     Speaking of Chuck E. Cheese the reservations for his party have been made.  It is going to be a small party, he really doesn't want a big one, and since there are only going to be 5 kids and 8 adults we are able to get the best party package and he is so excited!

The Santa area was beautiful.  The picture they took was amazing.  I need to scan it in to the computer.  It was by far my favorite of the season.  

The sky that night was beautiful. 

Matt really enjoyed the water area.  

There was a petting zoo there for the Christmas special.  Matt got to hold a bunny, a 7 week old pig, and a chicken. 

Matt has a high `energy night so he played hard.  He was even able to walk across the stepping area which he normally can not do. 

At the shopping center I put the handles back on his wheelchair and he got some practice wheeling himself around.  It was good practice for him. 

He rode the eagle on the merry go round. 

This by far was his favorite attraction.  It was in sensory village and he got to paint cars.  I got at least 10 complete pics in my inbox. 

On a side note, Matt's stoma site is still red.  We think he is having a reaction to the type of tube, so we are ordering the AMT minione as soon as it gets in we will change it. 

Thursday, December 6, 2012

Attendant Care

     At the end of October here in San Antonio we had a festival for special needs.  As I was walking to the booths I ran into a company that mentioned they offered attendant care.   I decided to look into it because I could really use some help.  I had a meeting with the people that approve hours a few weeks ago, and today the nurse from the agency came out.  Matt qualifies for 8 hr and 45 minutes a week.  The nurse that came out here today said that other than the MDCP there is another way to qualify for nursing care, she said Matt was probably approved for so few hours because he needed nursing care hours.
     Next week we start with attendant care and in the next two weeks the nurse should be able to turn in all the paperwork for the nursing care.   I am looking forward to having some help, I love Matt more than anything, but I literally don't have anyone to help with him.   Attendant care is a nice idea but they can't do anything medical and when you have a medically complex child most of their needs are medical.

     December is in full swing.  We are enjoying the season.  Every morning Matt wakes up wanying to find Mario his elf.  Then he wants to open his Santa Ball (a secret ball where Santa can leave Matt little goodies) then he wants to open up his playmobil dinosaur expedition advent calendar.  We also try to fit in the truth in tinsel story and craft, and every night he picks a wrapped Christmas book we are using as another Christmas countdown and we read a Christmas story.   I love this time of year.  Christmas shopping is almost done, almost all the presents are wrapped, and we are looking forward to some cooler weather.

    There is also some stressful things going on I am trying not to focus on.  My husband has three children.  They have never had an official child support hearing.  He has always given them money and helped out in every way he can.  From the beginning of our relationship I have told him over and over again he needs to keep track of everything he has given them, he hasn't listened to me and now he is being taken to court for child support.  I am really hoping when they are figuring out back child support they take into account everything he has done for them.  We pay their car payment, insurance, and registration every month, plus so much more.

     In the very back of my mind I am still thinking about what Dec 26th will bring.  I am anxious about results.  I know that there are mild cases of mito, but I also know the early the symptoms show the more likely it is to be a more severe form.  I also know that puberty is the telling point.  Mito kids have a tendency to either level out at puberty or take a turn for the worse.  What a scary telling point...

    I will leave the post on a happy note, with pictures of course!
Matt's Christmas book countdown! 

Mario hiding on Matt's medicine pole playing with his beads of courage. 

 Mario fishing for tires with Mater 

Waiting to see Santa. 

Visiting Santa.  
Santa was so impressed with Matt's Christmas list he put it in the picture, he even said it was the best list he had ever seen.  Matt was so excited to see Santa even though the wait was an hour and he could had played games on his ipad, he set up pro lo quo to tell Santa what he was wanting for Christmas and wouldn't change it. 

Playmobil advent calendar.  You might not be able to tell but every night Matt puts the people to bed in the sleeping bags inside the tent and leave the motorcycle outside the tent.  Such an amazing kid!