Monday, July 30, 2012

Spoke too soon.

I have been so proud of Matt's emotional maturity.  Things were going great.  Even though pouting isn't fun to be around, it was such a wonderful place to be after tears and hitting.  
We are back... 
This week has been harder.... Matt has regressed emotionally... big time. When he is upset about ANYTHING... small or big he has a meltdown.  He cries and cries and cries, sometimes fake and sometimes real.  He has been throwing things and hitting me.  Not fun at all. 

He is still working on potty training. I think I have said this before but I don't think his body is giving him the signals when he needs to potty.  He is really motivated by candy right now so when he starts to pee he runs to the bathroom and pees very little in the potty.  His diaper is usually already pretty full by this time.  He is still going potty about 5 times a week. 

Tomorrow I am hanging out with my grandmother.  I am looking forward to it, I think it is just going to be Matty, her, and I.  It has been a long time since it was just us.  We used to have great fun together.   I am nervous, I am still really upset about the last visit.  I want to take Matt's medical records with me and pull them out.   I know it is petty and it won't change how she feels.  I am not sure what I will do about the records.  

Saturday, July 21, 2012


A few weeks ago I started reading a blog for probably the wrong reasons.  There was a very strong christian family who had been told their daughter who had been fighting cancer would not make it much longer.  I started praying hard for the little girl and her family as they were going through this horrible, awful time.  I started reading because I wanted to see how a family that was so full of faith would handle such a loss.  I was hoping to a good example in case I am ever faced with the worst situation.

To my amazement God showed his mercy and the little girl took a turn for the better.  The family that was a week before planning a funeral was now working on rehab.   In the weeks since there have been ups and downs fear of cancer being back, illnesses and many scary moments.  Right now, test have come back and she is cancer free.

This has shown me very clearly who God is.  God still works miracles.  Every story doesn't end this way, and her story battle is probably not over.  But God is good, he has granted her family more time with her, more hugs, more fantastic memories. I have just been reminded I don't know where we are going in our battle with Matt, but God still works miracles.

Thursday, July 19, 2012

Life is pretty good right now.

Things are going pretty well in my world.  Nice un-expected break.

Matt's language is doing pretty good.  Most days lately he has been understandable.  I am guessing for me he is at 70% intelligible.  Other ears it is lower of course.

He has made leaps and bounds in the craft world!  He is starting to draw at times with intention, it doesn't come out the way expect but having intent is huge!  He is also doing well using scissors that open automatically, and for the first time he is making "art work" just to give to everyone.  (So many milestones here)

He is working on potty training!  I am really not pushing this, if I was we would be farther but I can't bring myself to push for potty training if it is only for a few months.  He has gone pee-pee in the potty a few times. I don't think he is getting the signal telling him he needs to go potty.  When he wants candy he remembers he can go potty and he tries.  This has led to a few successes and very  much frustration.  he gets very mad when he can't "go".

He is needing less sleep, most days he is sleeping 11-12 hours vs 12-15 hrs.

His behavior is good, he has made a major milestone with anger.  He has learned to pout.  It is so nice, when he gets mad, most the time instead of his first reaction  charging at me and hitting me, he is now folding his arms and pouting!  What a great change.

He still hates therapy, I am searching for an in clinic therapy that takes our insurance that fits our needs.

He is still losing strength - his core is weak and it is causing balance issues as well as other issues.  We were working on breathing exercises today and you could tell as he blew the different items (three of them) you could just see his energy draining.  We got about 10-12 good blows.

He is drinking and I am not having to worry about dehydration.  He is also eating some, but he is not really drinking much of his formula.  I need to start tracking again to check on his calories.  I am not sure if he is gaining, losing, or staying.

As far as I know we were approved for social security.  It is still processing but we had to open two accounts for Matt and she said I should see the money in the next 10 days.

That is the update for us.  Not many appts this month, just 7 therapy appts a week.  We have the swallow study on Aug 2 and we see the GI a few weeks later.

Tuesday, July 10, 2012

Important Tip

Helpful tip : I could never get Matt's nexium syringes clean.  I have tried everything I could think of, even using bottle brushes.  Nothing I did worked and everyday the syringes would build up his purple gunk.  If I separated the syringes the purple gunk would end up in weird places on either part of the syringe.  

The other day I finally googled the problem, the first site it took me to was a blog I read normally Life with the Tars.   She was giving a review of her day and she put in there she fills the syringes with soapy water leaves them over night and then in the morning rinses them out.  

I tried it and it worked!!!  I am so glad to have found this I have wanted to pass it on to everyone.  The only day I saw a revisit of the purple gunk was when I used two bowls of liquid one to rinse the syringe and one to drawl up hot soapy water.  The next morning I woke up and in two of the syringes there was a purple haze at the bottom but washed out easy when rinsed.  Now everyday I rinse the syringes a few times in warm running water then drawl up the soapy water.  

Thank you so much for the tip!!!! 

Monday, July 9, 2012

Finally some summer fun!

Yesterday we went to our friend's house.  We had such a good time.  We ventured out into the pool and it was a blast.  We were in the pool about 2 hours.  I felt bad because I really should have taken Matt out of the water sooner.  He got so tired but he was having so much fun, and so were we. 

Matt loves to be thrown in the air!  

Matt loved the shark float, he wasn't able to stay on it, at one point he started asking everyone "does anyone want a shark back ride"  ha ha ha !!! 

I am not sure what they were doing, but I love this pic.  

Love this pic of Zach! 

All the kids had so much fun being thrown. 

This is a cute pic, but it worries me because it confirms Matt does not close his mouth under water. 

Saturday, July 7, 2012

Matt was approved

Matt was approved for social security on the disability level.  On July 17 we have a phone interview to go over the non disability requirements.  Not sure how that will go, hoping we qualify, really not sure.

Friday, July 6, 2012

Potty Training

There is not an issue I am more bitter about than potty training.  Last year Matt was potty trained!  He was the first of his friends around the same age to be completely potty trained.  We worked on it off and on for over a year, but one day he just got it.  He was potty trained for months, even at night.  The entire time I think he might have had 2 accidents, and one was my fault because I couldn't get to a potty fast enough.

Last year when he started regressing he had two accidents in one day.  After that all potty training was lost.  This was very hard.  Since that time I have worked off and on with potty training.  It has been really hard to get myself to want to potty train again, I have been terrified I would get him potty trained and he would lose it again.

Dr Gibson needed a urine sample, there office was closing so I was able to take the kit home.  The last time we had to provide a sample bagging him was an awful experience!  He hates bandaids on his skin, so having tape all around his genitals is not okay in his world.  Taking off the bag was even worse, he cried and cried, it was awful.  I really wanted to avoid that so I worked hard for 4 days to get him to go pee pee in the potty.

I knew he was no where in the potty training mode, but I really didn't know it was so bad.  I know he hates being changed, and runs away from it.  He doesn't mind being dirty at all.  Right now the concept of going pee pee in the potty is lost on him.  I offered candy for going pee pee in the potty and since when he pees in his diaper he will tell me "I peed can I get candy?'  I explain to him you have to go pee pee in the potty.  I can tell this is such a lost idea on him.

It is very frustrating.

Wednesday, July 4, 2012

Happy Independence Day!

This year more than any year I hope that America will keep the freedoms that we celebrate today.  

I hope everyone has a good safe holiday.  We will be venturing out in the heat, I am a little nervous, but I hope it is fun.