Thursday, December 29, 2011

Such a sad statement.. .

Today I am reading a blog from another mother with Autism.  She is in my autism group.  I have only met her once because I don't go to as many events as I would like to.  It is just hard with all the appointments we have. When I met her, her younger son caught my attention.  Her son was wearing leg braces like my son wears.  I was telling her that my son wasn't wearing his today but he also has them and they are so frustrating with sensory issues.  She stopped me and said, no this isn't my son with autism this is my son with cancer.  Since that day she has been in my thoughts and prayers.  I couldn't imagine having to deal with both cancer and autism, two such different needs in two different children.
Today I found her blog, while I was reading the history after about a week in the hospital the first day of chemo her son was so tired of all the poking  and prodding.   "They promise he'll get used to it over time, but I just don't see how."     This was so sad to me.  No child should ever have to get used to this!!!!  That statement shouldn't be in comfort.  The very though horrifies me.  While going through all this testing with Matt, I have had thoughts wondering if one day my son would no longer be so scared of all of this, and it breaks my heart.    

Monday, December 26, 2011

Christmas 2011

I can't believe Christmas is over, it went by so fast.  We had a good Christmas.  I wish we had done more, but most days we were really busy and over all I think it was a good Christmas.
Christmas eve I had a mini meltdown, I had real thoughts of just cancelling Christmas for another day.  Maybe I was just wanting to stretch out the holiday.
I was so frustrated, Christmas eve Matt just wanted to be in his room watching Backyardagins.  I wanted to make cookies for Santa, leave cookies out for Santa, read the night before Christmas and tuck him into bed.  I was so upset he didn't want to join in.  I even wrote a post on my autism board saying that it was the first time I could say I truly hated autism.  Everyone left comments trying to be supportive but they all said we just have to learn to adjust.
I came to the realization that this year was so much harder, every year in the past I was more willing to let Matt do his own thing but this year all I wanted was to make Christmas memories, this year in the back of my mind, there, the entire time, I was thinking, I don't know what this year is going to hold, I don't know what my sons abilities will be next year, I don't know how many more Christmas' I am going to get with him.  I really just wanted to make this year count and I lost in that area, because instead of taking things in stride I ended up yelling at my son trying to make him feel guilty for not wanting to spend Christmas with us.
After venting a little and Matt spending time in his room he did come join us for a while.   We did get a version of the Christmas eve I wanted even though it wasn't picture perfect.
Christmas was fun, it is a different kind of fun then I would have dreamed but it was nice.  Matt didn't pop out of bed in excitement to see if Santa had come, instead I spent 10 minutes trying to get him to want to go down stairs and see what Santa brought.  Matt didn't check to see if the cookies he left had been eaten, Matt saw one toy and just played with it for over an hour, giving no thought to the other toys or the stocking.  He eventually played a little with the other toys but the stocking was not even a thought for him.
We took him kicking and screaming to my brothers house were we had lunch and opened presents.  It was nice.  Matt loved all the toys he got.  He loved opening the gifts.
After my brothers house, we took him kicking in screaming  back home to finish opening gifts there with my father in law.  Matt really had an insane amount of gifts.  He would want to open them and play with them but I was able to get him in the mind set of lets just open and play with them later.  Every other year I have let Christmas drag out a week opening a few presents a day, this year it seemed like a better year to open them all and then play.
Now that Christmas is over it is back to reality for me.  Matt has pending blood work to do.  The blood work for battens disease got to the mayo clinic 4 hours too late because of the trouble we had had.  I also have to get blood work down and urinalysis done for Matt's neurologist.  We will do that his week.  I have also started working at my husband's company.  I will be staying in the office everyday and therapy for Matt will be moved here.  I really hope me being here will put less stress on Kevin and it is nice because I still get to spend the day with Matt.  

Wednesday, December 21, 2011

Where does time go?

The Christmas season is flying by way too fast!!!!  I was hoping to keep a really good log on our holiday events  but I have barely had time to relax let alone get a chance to write in my blog.
This Christmas has been a good Christmas season.  We have gone to Sea World a few times, even got to take my dad for the first time.  We have spent time with friends and family, made a few crafts, lots of shopping and wrapping, and of course have had many therapy sessions and doctors appointments.  (what a run on sentence) I am really sad the holidays are going so fast.  I have really enjoyed the break from reality.  I do have a bit to post on reality but those things can wait.
I will post some good news!!!!!  For the first time in 6 months Matt is making some progress!!!!!  Yes you heard that right!!!!!  Progression vs regression!!!!! We are not talking leaps and bounds but it means so much to me that he is progressing.
Matt has been less oral, he will hand me his pacifier and he won't chew on his clothes, hands, or objects.  He is a little more understandable, and he seems to have more energy.
This of course leads to more questions that might not have answers, no one really knows of illnesses where kids progress and regress, Matt loses and gains so many major skills.
Back to the holiday spirit!  Tomorrow is the first day of winter!!!

4 more sleeps till Christmas!!!!!  This Christmas is going to be a special one.

Friday, December 9, 2011

December is flying by!

December 9th

Every night Matt gets to open one of his Christmas countdown presents.  Since Wednesday night he was sick I didn't think it would be a good idea for him to have candy so I didn't give him one to open.  That meant last night he got to open two.  He was so excited.  He held both of them in his hands waiting to open them.  He unwrapped the first one then set it down and unwrapped the second one.  I thought that was so cute.  It made me wonder if this Christmas will be the Christmas he unwraps all of his presents and when all of them are unwrapped he might go back and look at them.  I hope not.  Matt has always been so much fun to give gift to because he loves toys and has always wanted to play with a toy as soon as it is opened.  I love that aspect of Matt.

After unwrapping the gifts we headed over to my nieces birthday party.  She had just turned 1 the day before, but she got sick and didn't even get to eat her cake.  It was still a nice party and really good to see everyone.

Today we were invited to be a committee for our insurance.  I don't really know what the point of it was.  When they were asked questions they gave those insurance answers where they don't really tell you much and you know that nothing is going to change.  We did get to have  good lunch and were given a $25 gift card for going.

Tonight we went and looked for Christmas lights. I wonder if anyone is born loving Christmas lights or if it is one of those things instilled in us from our parents.  Since I point them out Matt looks at them and then he will point them out.  I hope that it is something that he will really come to enjoy.  I have such wonderful memories of looking at Christmas lights.  I now live in the community that when I was younger had the best Christmas light displays.  The cars would almost be at a stand still as we drove through the neighborhood looking at the beautiful lights.  People would even stop the car and walk around just so they could see everything.  It is sad that 20 years later most of the houses don't even have lights up.  There was one house that looked really good but they lights were off so we didn't get to see it lit up.  I am hoping on a cold night coming up to stop at starbucks and buy Matt his first warm apple cider and find a neighborhood that will wow him.

We also watched Elf on a shelf tonight.  Matt really loved Chippy and kept pretending to fly.  I would love to get Matt an Elf on a shelf but honestly we  haven't even talked about the naughty & nice list from Santa.  It might be odd that I am not using it to try to get Matt to behave, but I just don't want to go into that with him this year.  I really want Christmas this year to be all about joy, happiness, and fun.  Maybe next year we will get into it.  

Thursday, December 8, 2011

Sick.. updated.

Yesterday we didn't do much Christmas wise. We made a cute Rudolph ornament. Sang Rudolph the red nosed reindeer over and over again but that is it. We went to my friends house for dinner last night and when we got home he started throwing up. He didn't even get to open his advent present because there was candy in it.

Today he is still throwing up. He says his ear is hurting. I am taking him to the doctor at 2:30. It is probably just a virus but with everything going on and Matt not being able to communicate very well I think it is better to take him.

Matt has an ear infection.  Glad we went to the doctor and glad it is not the stomach bug going around here.  

Monday, December 5, 2011

I need to blog... BUT..

I haven't wanted to.  I decided I am taking a break from having a "sick" child and I am going to make the most of Christmas I can.  Christmas is such a special time of year.  I don't want to miss it by being sad.  
I am going to use my blog this next month to try to add some happy memories.  

Nov 30-Dec 1 - realized ready or not Christmas is here and got my heiny in gear to get an advent calendar together.  I made origami boxes out of construction paper, filled them will little goodies, and wrapped them up.  Matt loves them.  I also found a christian Christmas countdown to read every night to Matt, and we also have a chain countdown on our tree with a verse for each day. 
I am trying to focus more on Christ this year because if Matt regresses more and has a terminal illness I want him to be able to find comfort from such a loving savior.  
This is how it turned out. 
Matt opening his first gift. 

Dec 2 was spent making Christmas gift and wrapping final presents for my grandparents and aunt that were in town.  We also make snowmen.  

An ornament made from clay and Matt's Hand. 

Matt and My Snowmen.  They cracked in places so I need to get some super glue.  

Dec 3 - we spent the morning and afternoon with my family.  We ate breakfast together, talked, laughed, played dominoes, and went to lunch.  A few people were missing in the photo but I didn't take many pictures hoping to get some from my grandmother. 
After lunch we took Matt to Build A Bear Workshop where he got Alvin.  Then we went to Chuck E. Cheese. 

Some of the family playing dominoes. 

Matt with Alvin.  

December 4 - We wet to Sea World - we were really bummed out because a lot of the rides were shut down and they were closing early.  We finally convinced my dad to go when we heard they were closing early.  We hope we can get dad to go this weekend.  

Matt on the Ferris Wheel 

December 5 - We had a follow up with Matt's sleep study.  We didn't find out much from the sleep study.  Matt isn't really getting and REM sleep and still has acid reflux.  I have to follow up this his GI on Dec 22.  I am pretty sure that will lead to something exploratory.
After the sleep study we went to the mall and did some Christmas shopping.  

Dec 6 - Speech therapy was cancelled Matt was very happy about that, he doesn't like therapy right now.  I still had a counselling appt so Angie watched Matt and he got to play with Ally.  
Then tonight my close friend who is going through a divorce came over and I made a fast dinner for her and her kids.  

So far it has been a busy holiday season. December is going so fast!  We have a busy rest of the week that I will update as we go.  I will try to update Matt's carringbridge soon with medical information.  I am taking a break from worrying or making new appointments but I do have a lot of follow-ups already scheduled.  

I hope anyone who reads this is having a wonderful holiday season.