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!

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.
"Yes."
"They will forget Thee?"
"Yes."
"They will reject Thee?"
"Yes."
"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 like...it appears so much like...it 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! 

Tuesday, November 20, 2012

Mito, Maybe?

I was very convinced we were not dealing with mito as you can tell by my last post.  Today we went to Matt's pedi and he brought up the muscle biopsy.  He said that a report he read said that the muscle tissue was conclusive to mitochondrial disease.  I told him I hadn't seen the metabolic I just know that his blood work came back inconclusive.  We talked for a few more minutes about it when he said there was another report that said that the muscle matter was inconclusive.  He was hoping I had answers.  I told him I see the metabolic doctor the day after Christmas.  It came as such a shock I didn't even think to ask for a copy of the test results.

Could it really be mito?  Could we finally have answers?  Am I ready for answers?  All this went through my head.  I wanted to block out any of Matt's illness until after Christmas, it seemed impossible this morning, but as the day has gone on  I am pushing the questions father away.

This morning my first thoughts were, maybe I don't want answers.  All I could think about was all the horrible stories I have read, all the people I have met who lost their babies to this horrible disease   I thought about how much has been taken away from so many.   I have come to grips with the fact that something is not right with Matt.  I understand there is a good chance it is life shortening.  I know that knowing what we are fighting is better than not knowing.  Still in those first few moments all I could think was "I don't want to know, I don't want it to be this".

I don't know where this leaves us on this journey.  Back to waiting.

Saturday, November 17, 2012

Regression?

     This year I am having a hard time calling what is happening to Matt regression.  For first time it has become clear that what Matt goes through is not necessarily regression but muscle weakness.  When he was younger it was harder to see that he wasn't losing skills but just can't access the skills that he has learned.

     I have written this before but it is so hard to see him go through this.  Yesterday he walked up to me with so much to say but I couldn't understand a single word.  It is hard to see him struggle.  This morning he fell down the stairs.  It all seems so unfair.

     I know that we are lucky, I know that he could be so much worse.  I still have a little boy that can walk, express himself, eat, and enjoy so many things.  Still, compared to typical children I feel like he has lost so much.

     I don't know if Matt has mito, there are some areas that mito makes perfect sense for Matt, but there are key factors that mito doesn't make sense.  Matt doesn't get easily dehydrated and sickness doesn't hit him hard.  I am grateful for both of those things, but it leaves me wondering  if it isn't mito, what is it?  We know it is a neuro-muscular metabolic disorder.   Most of the those fall under the muscular dystrophy umbrella, I am starting to think maybe I should be looking more into those resources?  Maybe a doctor who studies them? Matt has been tested for MD and SMA, he doesn't have either.... but I know MD cast a very big shadow and cover many things.

     Matt is in a weird place, usually when he regresses he calms down, he doesn't have the energy to be aggressive or hyper active.  This year he is very aggressive, much more than has become his norm.  I am getting kicked, bit, scratched, and hit almost daily. He is very hyper, just trying to get him to do Thanksgiving crafts is a never ending battle. Easy crafts turn into two day projects.  At the same time, he is tired more. He is back to sleeping over twelve hours a day, when he was sleeping ten.  Most days he either needs a nap which I have to give meds for him to take a nap or he comes to me and just says "I'm tired" and spends a restless hour or two in bed.
 
     I am trying not to let whatever is going on with Matt get me down.  The holidays are so short lived and I don't want to spend them being sad.  I have plenty of time after the new year for that.

    On a side note, most of my Christmas shopping is not only done but I have most of the packages wrapped.  Still I am very anxious for all that is left undone.  I woke up this morning almost in a panic attack having to write a list of everything left to do.  I know that this next month will just fly by and I don't want to forget or not plan for anything.  When I see commercials on TV that say things like "Start your Christmas shopping here" or "Don't wait till the last minute start today"  I am not only dumbfounded people haven't  started preparing yet, but I feel major anxiety.  I know, I know I have a problem. When I was younger I prided myself on being a last minute kind of girl.  I would usually use my last paycheck before Christmas and do all of my holiday shopping.  I loved the last minute hussle and bussle. Now that I am the mom, I am the one in charge of my families holiday bliss, I can't even imagine that.  I start planning months in advance.  I take Christmas in July seriously and starts shopping.

     What adds to the anxiety is Matt's birthday is so close to Christmas.  Not only am I buying and preparing for Christmas I also have to prepare to give Matt the best birthday he could imagine.  This year is Chuck E. Cheese, which is nice because they do most of the work, but it cost more than I would like to spend.  This last year the price has gone up considerably.  I love to spend money on Matt, I just wish I could have a little space between the two.

Sunday, November 11, 2012

Monumental Moment...

A few weeks ago during a cold front I had the door open, and Matt started yelling out to some neighborhood kids playing outside.  They came over to the door and I went outside with Matt and they got to play a little bit.  Since then everyday that has been cooler I have let Matt go outside and play with him.  Unfortunately,  most days around here are not cool enough for Matt to get to play outside.  We actually haven't been outside since the day before Halloween when we carved our pumpkin outside but it became too hot so we had to come inside.
I few minutes ago there was a ring on our door, it was Matt's friends asking if he could play!!!  We were about to go to the store but I decided it could wait.  I gave the little girl the trick or treat bags I made them and the mom came over to ask about it.  She doesn't speak a lot of english, but I told her I made it.  Then I went over to her house and explained that my son has special needs and he can't be out in the heat much and asked if the kids could come inside.  Matt has a ridculoas amount of toys and the kids could have so much fun playing.  She said it was okay.  So now all three kids are upstairs playing.  Probably making a mess of his room, but who cares it can be cleaned, and Matt is so very happy to have them there.  The bad part is that since Matt's bed isn't being used his toy bookshelf has been moved upstairs for the winter so we have access to our fireplace and his massive foam bag (bean bag type thing) and spare wheel chair are sitting on his bed.  He has a bed in our room he sleeps in.

I had to post this.  What a great day!!!!

Tuesday, November 6, 2012

Regression, school, and Mito update...

Matt has been regressing again, it is mainly language.  I haven't felt well lately so it is frustrating to me and him.  It is hard not to understand him, it is so frustrating for both of us.

Yesterday, we had his eval at school at the preschool assessment center.  It is the first real step to school.  I have put a lot of time into teaching Matt and because of that academically he is not behind.  They are already talking about 504ing him, which I do not find acceptable.  I know I will be asking for a NPT, I know I will have to fight for it, but I don't want him falling behind in school for his needs to be met.

I also got a call yesterday from our metabolic doctors office.  When I saw the number on my phone I didn't want to answer it.  I knew what it meant before I even said hello.  Some of the blood work results have come back.  (Not the muscle biopsy) and they are negative for any specific mito.  As we all know, it doesn't rule out mito, but it also doesn't point to it.  It is so frustrating to be here.  I pray the muscle biopsy gives answers.  At times like this I really just start to wonder, and I just crazy?

Wednesday, October 31, 2012

Happy Halloween!

I am glad it is over!  Not that I don't love Halloween, because after all it is my favorite holiday.  This year I am so excited for Christmas!  I am ready to decorate and for the season to start.  Last year I really missed out  at Christmas time.   Matt was still regressing very rapidly, it was his longest regression we had seen.  It alone  was scary, I remember not knowing what I could get him for Christmas that he would be able to play with because he had lost so many skills and I didn't know where it was going to end.  We were testing for very scary illnesses.  We were testing for leukodystrophy and then batton's disease.  Both awful terrible illnesses that would take my son on a long painful death.

This year we are still testing for scary illnesses, and there is still a chance that my son won't make it to adulthood, but this year the regression hasn't been as bad and living this life of uncertainty for over a year you get used to it. You still cherish every day and try to enjoy everything as much as possible, but you are no longer living in the constant crying mode so scared of everything.

Welcome November!  I am excited for the next two months.  I want to cherish every part of the holiday season.  I am in no way ready for what the next year will bring so I want to stay right here in the holiday season of 2012.

I don't believe in this saying, but I am going to say it tonight to start the next two months.

Happy Holidays!!!!! 

P.S.  I will post more about our Halloween week soon.  We didn't fit everything into it we had planned, but we still had a nice time.  Matt was a ninja turtle. 

Thursday, October 25, 2012

Halloween Week!

We have lots planned this week!  Very excited and I hope Matt makes it through the week with out getting sick and plenty of energy.
Tomorrow - Boo Bash, a Halloween party at a local Children's museum with our playgroup.
                 - Sea World to see the Howl-o-Scream event.
Saturday   -  Carving the pumpkin Matt picked out (It is a great pumpkin I don't think I could
                     have picked better)
                 -  Fall Festival at a local church that usually isn't very busy so Matt has a blast!
Sunday      - Church
                 - Accessabiltyfest, I am looking forward to connecting with some local special needs
                    companies.
                   We are currently in between therapy companies and if I find one there I like better
                    I might switch.
Monday     -  A laid back day, but we do have a visit from our home health nurse.
Tuesday     - Another laid back day, but we have play therapy.
Wednesday - HALLOWEEN!!!
                   -My church has an awesome fall festival, with pony rides, trains, food, and moon
                     bounce.
                   - Then a Halloween party at my best friends house which includes trick or treating
                      in her neighborhood, that was a great place to trick or treat last year.

When we are not busy we will probably be doing some last minute Halloween crafts and helping my best friend prepare for her party.

There is supposed to be a cold front this weekend, I am glad we have stuff planned to enjoy it.  The bad news is Halloween will be hot again.  :-(

I hope everyone else has fun plans for Halloween.

Wednesday, October 24, 2012

Button!

I am very glad to announce that Matt now has a mic-key button!  After almost 5 weeks of a PEG tube he now has a small button on his tummy!


This was Matt's PEG tube, I am amazed that I don't have any better pictures.  I have lot of pictures of the granulation tissue around the tube, but this was the only picture I took of it in place, and this one you can see chocolate chip cookies in the tube.  I wish I had a clean view.


This  is the button.  Even though it has only been a few days I am hopefully that it the answer to help granulation tissue.  

So far along this journey Matt has been "hooked up" 22 hours a day.  Since the tube I have been aiming for 16 hours a day, most of those while he sleeps.   Trying to increase his feed speeds hasn't been easy. too fast causes distention or vomiting.   



Friday, October 19, 2012

Sorry for the long over due update

I plan to go back, write and back date post for future reference.

Matt is doing great.  He is finally able to eat most things again with out throwing up and we have seen major improvements.  His tic that was happening the last few weeks is almost gone!  PRAISE GOD!  He also has so much more energy.  The other day he ran for over 5 MINUTES!!! WOW!!!!

On Monday Matt's PEG tube will be changed to a mic-key button.  I am looking forward to this change, enough though he is currently on continuous feeds so he will still have a tube on him most of the time.  He hasn't been able to tolerate faster feeds yet, still working on a good balance.  I am hoping the button will help with granulation tissue.  - He can grow lots of it VERY FAST!  A upcoming blogpost will be titled..  granulation tissue; it will happen to you.

I am finally getting into the stride of things and he is healing well.  Hopefully more post will be coming soon!

Thursday, September 20, 2012

Surgery Day

I am so glad that yesterday is over!!!!!  This post is more for my record, sorry if it is boring.

At 8:30  we arrived at the hospital.  Matt was in an okay mood, but he was already asking to eat.  He wanted a cookie and a drink. Of course I wasn't able to give him anything.

At 9:15 Matt got changed into his gown and on the of members of the pastoral staff from our church came up to the hospital to be with us during the surgery.  Our church is pretty big and I had never met him before but I was very glad he was there.
At 10:00 we went up to the second floor for surgery prep, meeting with the surgeon, anesthesiologist, and their residents.  Due to Matt's muscle weakness and history of sleep apnea they took a lot of precautions with putting him under. 

At 11:30 he was taken back to the OR,  They had given him the medication to calm down and as they wheeled him back to the room he was happy and chatting with the nurses.  They waited until after the nitrous oxide to give him his IV.  They wanted for him to be almost out to give him the IV but he couldn't be asleep as part of the precautions.  He also have to have a breathing tube until after he was awake.

11:30-1:40 - We waited.  Kevin wasn't able to make it to the hospital before the surgery, but got there shortly after Matt was taken back and was there until a little after he woke up.

1:40-2:15 - Matt was in recovery waking up.  This time seemed so much longer than the surgery.   Charles had left so I got up and talked to some of the other people waiting.  I met a nice woman who's son was on his 7th surgery.  He has to have surgery on his back every 6 months.  She travels from Laredo and she was there alone.  I am glad I talked to her, the doctors had talked about her son getting a feeding tube very many times and she was really reluctant.  He will drink some pediasure by mouth but he won't ever finish it.  I told her when we started discussing it that I did a lot of research and so many parents said their only regret was not doing it sooner.  I told her I was excited that I wouldn't have to worry so much about what he eats and drinks, I spend so much time worrying about it and I was sure she did too and this will be a major relief.  She doesn't have a computer but I did tell her if she gets to a computer to look up a few websites.

2:15 -FINALLY I got to see Matthew!  When we got there Matt was barely awake.  He was very groggy. They had just taken the breathing tube out but his oxygen would be low at times.  They were about to have to put him on oxygen when he woke up enough to start screaming!!!!  Then we went on with an awful hour!  He cried and cried and cried!  They gave him four doses of morphine and a different pain med.  Finally by the grace of God he calmed down enough to go to his room.


 
This was when we first got to see him.

This was in the room. 

Last night was a rough night.  Matt over all was doing well but he was really tired.  Since he doesn't have the ability to put himself to sleep this made surgery so much worse.  He was very irritable and he wants to eat.  When I got to the room I got a surprise dumped on me.  Since the tummy has to rest with the tube being so new he would not be able to take any meds that go through the digestive system.  He can only have IV meds.  When I heard this I was so frustrated.  I kept checking to see the status of finding a replacement IV med for clonidine and melatonin.  There isn't any. 

I kept having to tell the nurses he can't go to sleep on his own.  At first I don't think they believed me.  We had to call the surgeon on duty over and a plan of action was put into place.  (This was about 8:30, thirty minutes after his bedtime, and with the busy day he was already exhausted!)  We would try IV fenigrin (Spelling?) and if that didn't work we would try using his tube.  Clamping it for 30 minutes after.  They were really worried about using the tube and made sure  knew the risk.  He could vomit or retch and that could take out the stitches.  I  told them I was willing to try the finagrin and the other meds first but he really needed to sleep.   I wasn't trying to be difficult but it felt like they just didn't care, or even care to try to understand.  

By this time I had called my dad to come up to the hospital so I could go get something to eat.  I had had snacks but no real food and I needed to be away from the situation.  Yesterday there were lots of tears.  (mainly mine) 

After doing all the meds it was 10:30 and the nurse could not believe that nothing even phased him.  I tried turning the lights down the whole time, taking away games, which I don't have to do normally.  Nothing worked.  We put the meds in the tube, closed it up.  I put the movie on, gave him his game and right at 11 he fell asleep!  He didn't have any complications PRAISE GOD!!!!  

I stayed awake for about an hour finally got to drink some water and watch a little TV.  I have been so thirsty and hungry I can't eat or drink in front of Matthew.  I crawled into be with Matthew.  Every night when I am sleeping he crawls into our bed and I didn't want him crawling out of his bed with all the tubes attached.  I slept pretty well.  I would see the nurses come in to do vitals wake up for a second and go back to bed.  

At 6:45 the surgeon team came in and woke me up. Before Matt woke up I was able to drink some water.   At 9:30 another team came in.  They said they would let him start with drinking but we are still waiting.  We clamped his tube  this morning, we have released air once but there wasn't any gas in his tummy.  We drained the tube and there wasn't much liquids.  I am so ready to start feeds tonight so he won't be so hungry.  

He did get up and walk around this morning.  He was running.   I am incredibly surprised how well he is doing.  Praise God!   His leg did start bleeding though so we have to take it easier.  We are back in the room for now, and getting him to settle is difficult.  At 2 we get to go for an activity.  We even get to leave the floor!    

Tuesday, September 18, 2012

Surgery Tomorrow!

On Friday we saw the surgeon for a follow up.  It seemed kind of pointless and the only new information I learned was we would be at the hospital 5-7 days instead of 3-5 and the first 24 hours he will be in intermediate care to check his vitals and everything after surgery.  Friday afternoon I spoke to the scheduler and she said it could be scheduled for Oct 14th.  I was devastated.  I could barely finish the conversation with her.  I asked her if there was anything sooner.  She said she would talk to the surgeon and get back with me.
It might be silly but I was devastated because Matt has been looking forward to Halloween since the beginning of summer.  After a nissan from what I have read you can't eat anything but purees for 2 weeks and sometimes there is swelling and can take longer to be able to eat.  If the surgery was the 14th it would put it very close to Halloween and I didn't know if Matt would be able to eat any candy.  He doesn't eat a lot and when he has eaten much candy it causes him to throw up, but still no candy on Halloween would be devastating.  The latest I wanted to chance it was the first week of October .
After getting off the phone with her I tried to make my peace, I could have scheduled for November but he really needs this surgery.  He is having issues not being hydrated, being cranky, aggression, and now the tic.  I don't know how much of it is caused by his body not getting enough hydration and nutrition but I know it really affects things.  I called on Monday and left a message saying I was ready to go ahead and schedule for the 14th or later now since I waited to schedule.  I didn't get a call back, but I have been praying and leaving this in God's hands, because after all he is in charge and always knows the best plans.
This morning shortly after waking up, I was wondering if I should call the scheduler but put it out of my mind.  A few minutes later the phone rang and it was her.  She told me she hadn't forgotten about me and the surgeon was in the office this morning he spoke to her, some things came up and Matt can be scheduled for TOMORROW.  I told her yes, and thank you, while I was still in shock.  I am going to call her back in a little bit and thank her again because I am really not sure what I said to her other than yes.
So tomorrow is the surgery day.  We go in at 8:30 and schedule for 10:30.  I felt silly preparing so early list of what to take, the socks, the felt boards, etc, but with this turn of events I am really glad I did.  Today I have to do laundry, pack, 4 therapy appts (I could cancel but I have to let them know anyway so I might as well continue) shop, and prepare Matthew.  Since I already have list made it will be much easier to just check off the list.  :-)

Please keep us in your prayers as we prepare and for the surgery and recovery.  I will update as I can.

Tuesday, September 11, 2012

New Issues...

Matt has added a tic or a movement disorder.  Either one scares me and frustrates me.  Last Thursday in when I noticed it.  All three of his therapist commented on it.  I didn't think much of it until after therapy we went upstairs to play with a toy he has been wanting to play with for days.  He couldn't stop moving and there were jerky movements.  I called the doctor and we went in right away so he could see it to make sure it wasn't an emergency situation.

He wasn't sure what to think of it.  He did some research and it could be caused from one of his meds or he could just have added a tick.  I am trying to get a hold of the doctors that can help with the medicine issue but having to wait to get a hold of them.  I hate waiting.

I got a decent video today.  If you have any thoughts please share it.





Saturday, September 8, 2012

Fall weather is starting!

We were planning on staying home today but when I stepped outside and was greeted by the cooler temps I knew I couldn't waste the day. I packed up and told Matt I had a surprise for him. We went to Sea World! We stayed for 3 hours when it started to get too warm and then we headed for McDonalds.
What a great way to spend a Saturday!!!

Weight Check

Yesterday was Matt's weight check.  Matt has been eating a lot lately, but as you can tell by the list in the last post it is all junk food.  I have commented to my friends "are they going judge me for this kid gaining 5 pounds before getting a g-tube".  Checking into his weight check yesterday I told the nurse, the problem hasn't been eating, he is eating, it is junk food but he is eating massive amounts of it.  He just ins't drinking, I really think he is more aggressive lately because he is thirsty.  We did the weight check and he lost a little bit of weight and got a little taller.
They were concerned, they gave me a few suggestions but none that I haven't tried.  They said they would try to talk to the surgeon about bumping up the surgery.  Unless we are able to skip the follow up and go ahead and schedule the follow up is going to be Friday.

Today the weather has cooled a little.  I think I am going to enjoy the morning and take Matt to...


Friday, September 7, 2012

Feeding My Family.

In my house we have three adults and one child.  My father lives with us, he is disabled and it is much easier to have him here.  Plus I love my father and it is nice, my husband works all of the time, my dad doesn't mind killing the occasional scorpion or snake.  When my father lived alone I worried a lot about what he ate.  He lived off sandwiches, corn, and the occasional TV dinner.  When I was younger he was an excellent cook but after he had an accident and was in constant pain I guess he thought cooking was too much work.

I used to think I would never be a short order cook, that my child would eat what we ate.  Now days I cook dinner for the three adults and then make Matthew something on his approved list.  

Matthew eats:

Cheese
Yogurt
Grilled cheese (occasionally) 
Peanut butter and jelly sandwiches (he will go through phases) 
crackers
chips
broccoli (He used to love and could eat an entire bag, now he will ask for it, but not eat it often) 
pancakes
donuts
fruit snacks
marshmallows 
strawberries 

There used to be more fruits on this list but now most the fruits he likes he can't eat unless they are pureed and then he doesn't like him.  I still make him smoothies a few times a week, but I am lucky if he takes more than a few sips. 

The rule in the house stands I cook one meal a day.  (I cook all the meals for Matthew and me but not my father or husband)  Even when we have company (Our company usually comes from out of town and they have extended visits, weeks to months)  I let them know I cook one meal a day but I get a list of things they want for breakfast and lunch and have those stocked.  

I love to have family dinners at the table but with my husband being gone all the time my table turns into a medicine and sewing table.  When it is clean Matt and I eat dinner on it, but most nights Kevin's dinner is put in his dish and put in the fridge.  

I love for Matt to cook with me, he doesn't do it often, by the time I cook dinner he is usually tired and doesn't have the energy or attention to help me.  We do have a learning tower in our kitchen for when he wants to help me cook or just be in the kitchen with me.  

I love grocery shopping. I love to take my son with me.  I would love to shop everyday just for the day.   I even love taking my son to the store with me we like talking about the products or the displays.  I love now that we are in fall we get to see the halloween items.  He also likes to help me pick out items and with him at the store with me he gets to pick what he wants.  

Saturday, September 1, 2012

Letter to Caregivers

With the changes coming I finally put a letter to caregivers together.  It wasn't easy.  Tomorrow we are trying church again.  It has been difficult.  There is so much back on forth on if he needs a buddy and what class he belongs in.   The person in charge of the special needs department is always changing and it is just a mess.  I now have to call days in advance to let them know we are planning on coming to church which is frustrating  because so much of the time we plan to go Matt starts vomiting or has a fever and we have to cancel.
I called Friday and let them know we are planning on being there, hopefully we will make it.  Since Matt can't have thin liquids there was no time like the present to write the letter.

This is a general letter, the medication list is mainly for mom's day out, but thought any caregiver might want it.




This is Matthew. He is an amazing four year old boy. He loves cars, dinosaurs and super heroes.  He knows more about dinosaurs than I learned my first thirty years of life.  He will tell you all about then but you might not be able to understand it.

Matt has an unknown neuro-metabolic disorder.  This causes problems with different systems in his body.  Right now we are testing for mitochondrial disease and we are hoping for answers.  For now he is a wonderful mystery. 

Most days Matt struggles with articulation.  On good days about 50% of what he says can be understood, but he also has bad days where his intelligibility goes down to 20%.  Matt is eager to communicate and doesn’t always understand that other have a hard time understanding him.  He has a communication app on his iPad, on days you have a hard time understanding him hand him his iPad and ask him to use his communication device. 

Matt has a problem swallowing thin liquids safely.  Everything he drinks needs to have *simply thick added to it.  When he swallows liquids some of the liquid does down his trachea into his lungs this can cause him to get very sick.  He also can’t have foods that when you bite into produces juice, like oranges, ripe peaches, and watermelon.  When he eats these things they need to be pureed.  Other than liquids Matt has a normal diet.  He doesn’t usually take enough calories by mouth so he is supplemented with formula.  Matt will be getting a feeding tube in the next few months.

Matt falls a lot and gets pushed over easy.  His muscles don’t work the same way ours do.  Lately he has been having issues with his core muscles which makes it harder for him to keep his balance.  It doesn’t take much to knock him over.  He is very tough though so he recovers from falls very fast.  He also has problems with his legs and he has to wear braces on his feet to help him be stable. 

Texas heat is hard on everyone, but people with neurological disorders need to be even more careful when heat is involved.  When it is over 85 degrees and sunny, Matt shouldn’t play outside.  He loves to be outside but it takes a toll on his body.  In the cooler months it is fine for Matt to be outside and we spend lots of time outdoors to make up for these hot summer months.

Matt is not potty trained.  Last year he was fully potty trained but one day the skill was lost.   Occasionally he will ask to use the potty or go when you ask him to.   He does need help undressing and dressing.  He will not tell you when he is dirty and will run away when he is soiled.  If it is not your policy to change diapers call or text me and I will be there right away. 

Unlike other children Matt can’t put his body to sleep.  In order to sleep Matt needs medicine to tell his body it is time to rest.  With medication Matt sleeps 12 – 16 hours on typical days.  Some days he needs to sleep 20 hours.  Matt gets tired very easy, but tiredness on Matt looks different than typical children.  When Matt gets tired he goes into overdrive, stops listening and runs around not knowing what to do with himself.  Some days I put him to bed early, but most days this is just the way our evening goes. 

Part of Matt’s sleeping problems is he has seizure like activity.  You can’t see he is having abnormal braid activity on the outside, but it keeps him from getting to REM and wakes him up often.  Matt has also had other types of seizures in the past. Seizures in Matt have been partial seizures, looking like he was in a daze with ½ of his body not functioning.  Or they have been silent seizures where he will be doing something then all of the sudden stop after a given time he goes back to the activity like nothing happened.  The best way to tell if he had a seizure is he is very tired afterwards.  It has been a while since Matt has had a seizure, but it can still occur and can be different then the types in the past.  If he has a seizure please try to keep count of how long it last and call me immediately. 

Part of Matt’s metabolic symptoms includes ADHD-like behavior.  He does not have ADHD but at times it seems like he does.  He can also have problems with aggression.   He isn’t known to hurt other children and he is usually very good with people he doesn’t know very well.  If he starts getting upset try to breath slowly with him to get him to calm down.  If he doesn’t calm down please call me immediately and I will be there as soon as possible. 

Matthew has many sensory issues, he doesn’t like loud noises but he himself can be very loud.  At times he uses a pacifier but usually will not use it around other people.  If you are working with small objects please just keep an eye on him that he keeps them out of his mouth.  He has swallowed coins before. 

Matt has weak finger strength and has a hard time doing some activities that use fine motor skills.  He still loves to do crafts but he might need more help in some areas than other children his age.  His middle finger is his dominate finger and he has to be reminded often to use his index finger instead. 

Matt is a fun, happy and smart little boy.  It is easy to not even notice his challenges because it is so easy to get wrapped up in his charm.  He loves to be around kids and he is very outgoing.   

If you have any questions or any problems arise please call or text at 210-857-7464. Matthew also wears an emergency medical response bracelet around his wrist.  In an emergency EMS response team can get all of his medical information off his bracelet. 


Thank you,

Jennifer Guinn
210-857-7464


* Directions for mixing Simply Thick are attached.  Matt needs nectar consistency. 

Attached is also a list of Matt’s medications. 



List of Medications

Matthew Guinn
DOB 01/10/2008

Polyethylene Glycol 3350
½ cap -1 cap daily

Nasonex 50MC/AC
One spay in each nostril 2x daily

Melatonin 5 mg
Nightly

Cetirizine 1 MG/ML
5 ML nightly

Risperidone .5 mg
1 tablet at night, 1/5 tablet in the morning

Clonidine .1 mg
1 tablet at night

Nexium  20mg
Taken nightly

Ondansentron ODT 4 mg
½  tablet  taken as needed for v omitting

Matt’s  formula is Pediasure Peptide 1.0  he drinks 24 daily

Duocal 1 scoop in pediasure

Simpy Thick
1 packet .5 oz in every 4 oz of liquid. 
Matthew can not have thin liquids without simply thick.  This includes but is not limited to water, juice, milk, soup, ice cream, smoothies etc. 
Matthew also can not have complex fruits, which are fruits with solid and liqud unless they are pureed with nothing added.  This included peaches, oranges, plums, etc. 

I am also attaching simply thick directions.   

Tuesday, August 28, 2012

More Prep


Today I made this for Matt.  I have been wanting to make a car mat for a while.  We have a dinosaur mat that Matthew loves.  A hospital trip in our future finally pushed me to do it.  Tomorrow I will probably make another one that can connect with it.  I showed Matt what I was making, he grabbed cars and couldn't wait to play with it.  I kept telling him it wouldn't be done for a while.  When he wakes up tomorrow he will be so excited!
Still no surgery date set.  I haven't heard back from the surgeon.

Car mat and dinosaur ideas and templates came from this amazing website.

Monday, August 27, 2012

Still no date!

This morning the first call I made was to the surgeon's office.  I still didn't get to talk to the scheduler.  Instead she had someone else tell me that I needed to schedule a follow up.  WHAT?!?!?!  If the doctor had wanted to schedule a follow up he would have done it while I was at the appt.  The nurse was surprised she wasn't scheduling anything but the reason was because he wanted me to call the tell them what surgery and schedule it.  I really think the scheduler just doesn't like me.  I might be paranoid but she wouldn't even get on the phone herself to tell me that I "needed" a follow up.  GRRRR... I just want this over with.  This summer has been so hard.  I feel so bad that Matt has to struggle everyday.  He is so thirsty   It is awful he is waking up begging for water.
I left a message for the doctor who is out of the office for the week.  I hope he calls me.  I really don't want to wait until Sept 14 just to tell him my decision about the surgery.
I am also frustrated with mother's day out.  The process shouldn't be taking this long.  I am sticking to it because I know Matt really wants to go.

In preparation for surgery day I made some slipper socks.  I was going to go buy some but Matt has a lot of socks he can't wear with his braces so I thought I would see how it goes making them.  Plus I didn't know if it would be easy or hard to find cute ones in Matt's size.


Some turned out cuter than others.  Just want them to do their job.  
I doubt they will be used other than in the hospital. 

Matt's unblemished belly.  I didn't think I would feel sentimental but I am.  
Especially doing the fundo.  His little belly will have 5 holes!!!!  
I hope mederma will help heal the fundo scars.  I love his little belly.