Thursday, May 23, 2013

Lost

As of last week Matt is now regressing.  I guess my question of what causes regression has been answered.  Soon after the first hot day Matt's intelligibility decreased about 50%.  I hate these first few days, it is so hard.
On top of regression on Sunday Matt dropped his ipad on his big toe.  On Monday we went to urgent care and they put a hole in his toe to let it drain.  Having this "owie" has thrown him into a mito crash.  Everynight we are dealing with fever, vomiting, and Matt being just plain miserable.
I know this time will pass... It just sucks.

Wednesday, May 15, 2013

Summer Already?!?!


I might be in the minority here, but I am really missing the wonderful weather we had last month.  I miss jeans and long sleeve t-shirts.  When it gets this hot we are really limited on the things Matt can do.  

I guess the count down to October begins now. 

Sunday, May 12, 2013

I Miss My Mommy

I couldn't sleep last night, there was such sadness in my heart.  I miss my mom so much I can't stand it. There is no one that can hug you the way your mommy can, and there have been lots of days the last few years I have really needed her hug.  I wish that I could crawl up on her bed and cuddle with her.  I wish that I could ask her questions, hear her advice, or even just hear her tell a story.

I hate Mother's day.  I have had hard feelings towards it for years.  When I had to put my mom in hospice I was dealing with pregnancy loss.  Her last mothers day was right after the  due date of my first pregnancy.  I was so hurt by losing that pregnancy loss that I told my mom I couldn't spend Mother's day with her and I celebrated with her a few days before.  Looking back I really regret that.  I have regretted it for years.  I really hope that she knew how amazing I thought she was.

The worse part is that my mom died so young, I never got to the age of maturity to know how special a mom was.  My mom was a pretty amazing woman and a great mom so there was never a riff, we never went very long with out talking. Even at that, there is a difference from the way you feel about your mom in your early twenties, vs how you feel about her in your thirties when you are a mom.

Today I went to church, my best friend was dedicating her daughter, as I rule I don't go to church on Mother's day.  I hate that I bent that rule.  I cried so much.  I felt like a big baby.  I kept having to remind myself "just keep breathing" and I told my self repeatedly "put on your big girl pants".  When walking my son to his class a woman asked him "Have you told your mom Happy Mother's Day yet?" He didn't respond so I said we don't celebrate Mother's day.  I got a look like I was an alien from outerspace.

I know the day is coming that Matt is going to want to celebrate Mother's day.  I hope and pray that I am able to enjoy that day and not get lost in my sadness. 

Sunday, May 5, 2013

April

April came and went and Matt is still doing pretty good.  I am not sure why. Things it could be...

The feeding tube - getting better nutrition / hydration.
Starting CoQ10 and vitamin E.
The weather has been very, very mild for April.
Matt isn't in therapy so he isn't being tracked to see a difference.  (which could mean, mild regression)

It will be interesting to see what May brings.

Some April photos.

Saw Dinosaurs at the museum. 


Had a few nurse visits, over April I think we had 4-5 nurse visits.  
We had to switch companies so hopefully this will be resolved. 


Visited Pump It Up. 



Spent time with his best friend. 


Went to the Texas Family Fun day with the UMDF. 
Made some new friends and saw some old ones. 




Got in a visit to Chuck E Cheese.

First time riding in outdoor go-karts. 



Played putt-putt. 





And Air Hockey

Went to the zoo. 



Watched Toy Story with the gang.

Indoor go-karts. (We won both indoor and outdoor)

Had our first San Antonio Tubies meet up! 

Friday, May 3, 2013

The Blend

About 2 months ago I started giving Matt a partial blended diet.  Since Matt got his tube I have been very interested in a blended diet, but Matt has always had major constipation issues.  When he was younger his diet was mainly veggies and he still couldn't go potty.

I decided to talk to his GI about stopping miralax and changing formulas.  Matt is now on peptimin jr with fiber.  It started helping, but I experimented with baby food and I had even better results.  He still has some issues, but it is manageable  and miralax is still a PRN med.

Matt's blend

3-4 cans of formula
2 jars of baby food veggies
1 jar of baby food fruit
1/2 cup of baby cereal
vitamin E
8 oz water

With Matt's potty training we have had to change his feeds around.  Before the majority of Matt's calories were night time calories.  Now we have to get everything into the day.  Matt also started having a very sensitive stomach so this is very challenging.  If he gets too much in his stomach he started retching and won't stop. At times zofran works, other times I have to empty his stomach contents.  I plan to talk to his GI about this next month.

I haven't noticed much of a difference since starting the blend, but I know I feel better about it.


Thursday, May 2, 2013

Time Out

I write as I am locked in my room while a 5 year bangs at my door.  Lately I have learned that putting myself in time out has been much more effective then putting Matt in time out.  We were getting ready to leave and Matt decided to start hitting me.  So I locked myself in my waiting for him to do his time out.  It seems like the last few weeks have been full of aggression.  I don't think it is time for a med change, I think some years his regression is much more aggressive.  I know that in a few months it will pass, but it doesn't help with the right now.


The other day at the zoo Matt had the biggest melt down he has had in a while.  It lasted over an hour, both my friend and I had to restrain him.  Another friend how had to help me force him in a car seat.  He almost got out of a very tight car seat, but I grabbed his leg and held on so he couldn't keep trying.


These times are so frustrating, Matthew can be the sweetest little boy.  He has some of the most amazing qualities I could have ever asked for.  Times like this, it doesn't even seem like him.  I wish it was different.


Matt is starting to break things in the hallway.  It is taking a lot of restraint on my part not to go and see what he is breaking.  I know the best thing to do is ride out the storm and check out the damages later.