Friday, April 26, 2013

Living Life: Nursing Home Style

So I think I had left off where we were waiting to do our nursing home stay to finally secure our place in the Medicaid waiver program.  It was strange trying to explain what a nursing home is to a 5 year old let alone trying to explain why we had to stay there.  We arrived around 8PM and were told we had to stay until after midnight but could leave any time thereafter.  I actually thought we would just stay the whole night because once we get Anna to sleep it is wise not to wake her.  Kenneth stayed home with the other 2 while Anna and I loaded up and headed to the nursing home.  It was storming hard and pouring down rain there and all I could think about was the Casting Crowns song "Praise You In This Storm" as I drove there.  Who ever thought I would be spending a night in a nursing home with my child as hopefully the final hoop to jump through to secure what my daughter so desperately needs. 

Anna fell asleep rather easily after watching a few episodes of iCarly.  I had just drifted off when Kenneth called and all I could hear in the background was Gabe screaming and crying.  Kenneth is not the type to ask for help so I knew when he called things must be bad.  Luckily it was after midnight so I loaded up all of our stuff and a sleeping Anna and headed home.  I was pretty much unable to console him either.  He was clearly miserable and had a fairly high fever also.  I took him to the Dr. the next morning and was told it was likely something viral and to give him Motrin and Tylenol.  No sooner had I gotten home from the Dr when I looked in his mouth and found this-  this was one of the many blisters covering his tongue and mouth.

I gave Motrin and Tylenol all day with no relief for him.  He couldn't eat, drink, or sleep.  After hours of that I finally decided to take him to the ER.  They gave him some magic mouthwash which numbed the tongue and he continued to cry and cry.  They finally gave him some Tylenol with codeine and thank God he calmed down and suddenly became this kid...

This dreaded virus went on for about 10 days.  I later found out from our pediatrician that it is called Acute Herpetic Gingivostomatitis.  It arises when a child has their first exposure to the Herpes I virus (think fever blisters).  I'm not sure where he picked it up but thank God that after the first time it isn't ever supposed to be that bad again.  So, back to the nursing home.  It really wasn't so bad.  The one we chose had a small aviary inside so Anna was content to just look at the birds until it was bedtime.  After the stay was complete we were called and told Anna officially has Medicaid and that we now get 28 hours of respite care per week.  Amen!  We chose what is called the CDS option which allows us to hire who we want for the hours we want and we just pay a fee to a service to take care of all of the tax stuff.  The other option is an agency option.  I really wanted to choose who is with Anna so we went with CDS.  It is a little more work in the beginning for me but in the end it will be worth the peace of mind.  I never wanted to "depend on the system" and I hope to always be able to carry a primary insurance and not depend on Medicaid for everything but I must say that having that little card has opened doors I never imagined existed.  Anna is finally able to get private speech therapy that our insurance never would have paid for.  The 20-30% of her medical expenses that our insurance didn't cover are now covered.  For those without medically dependent kids I am sure you are wondering how much 20-30% could really be.  Trust me.  It is a lot.  Like multiple hundreds of dollars if not more per month.  Since Anna's birth our financial situation has been difficult.  Please don't read that as blame.  It is not.  We have not always made the best financial decisions but the bad decisions were much harder to recover from with the mounting medical costs.  I think for the first time in 5 years we can breathe from a financial stand point.  We might even laugh and be silly just a little bit more because financial problems do create stress.

Homeschooling with Carly is still going well.  We are still finding what works for her.  I am really enjoying getting to spend some 1:1 time with her most days the teaching is good for me too.  It makes me use my brain and get creative with ways to make things stick with her.  She is so smart is scary.  They say kids with dyslexia are usually exceptionally smart.  They are not lying.  She is an old soul who is wise beyond her years and I couldn't be more proud of her for the lady she is becoming.  She has learned to be kind and to respect all kinds of people at a young age- something many adults cannot do.  Don't get me wrong, she is still an 8 year old but she is just amazing! 

Anna and Gabe are amazing too. They all light up my world every day with their sweet smiles. Although I love having them young I also am excited to watch them grow up and to see who they become- they all have so much potential.

Monday, April 15, 2013

Rest In Peace Gavin

I had some time and many many things to update about.  But I can't.  I can't because it just doesn't seem right to blog about all of the things going on in my childrens' lives when another special needs mother is grieving the loss of hers.  Please take a moment to read about Gavin and then take the time to help his mother by somehow paying it forward.  As for my updates, they will come later, when it feels right.