Saturday, December 29, 2012

My Heart

Here it is- the quarterly post.  I am so sad that I don't have the time to blog anymore that I used to.  It was such a place of therapy and refuge for me.  First off, we had a great Christmas!  We actually celebrated on Christmas Eve since Kenneth was on duty Christmas Day.  It's great to have that connection with Santa that you can get hi to come a day early.  Carly's big gift was a new puppy.  Since we had to put one of our dogs, Max, to sleep a few months back because of heart worms and renal failure we had promised the kids we would get another dog.  Carly never let us forget it.  We finally decided it would be OK to get another one and so Santa delivered the cutest little Italian Greyhound.  Carly named him Season and he is fitting in great with the entire family.  I even saw our other dog, Rocko, play today with him like I haven't seen him do since Max died.  That did my heart good!  Santa brought Anna a kitchen and Gabe got a workbench with tools.  Of course they got lots of other stuff from us, too.
Pardon the psycho eye glow of Season 

Homeschooling is still going well with Carly.  We do have our struggles but we work through them and all in all I still believe it was the right thing to do.  We added more dance classes to her weekly schedule so that she gets more time with her friends and other kids her age.  Gabe continues to do well also.  He can say anything he wants to but always tries first to grunt and point.  He lives for Barney and Bubble Guppies.  I cannot believe he will be 2 at the end of February.  He is still sleeping in his crib even though he did climb out once.  He hasn't tried to climb out again so I guess for now we are safe.  

And now to the meat of this post- I am going to share some tings that are on my heart that I have debated about whether or not to share but in the end I think it is important to get it off my chest and to maybe help others not feel so alone.  First off, Anna's medical expenses are eating us alive.  Our insurance still refuses to cover the tube feeding formula although they paid to put the tube in and pay for the pump and feeding bags.  It costs $650 per month to feed her the formula.  Since starting it a few months back she has gained over 5 pounds.  That is huge.  We cannot afford to keep feeding her, but we cannot afford to stop either.  When I call Medicaid or SS  they laugh and basically tell us to either divorce or quit our jobs- otherwise we will never qualify.  Anna is also needing some therapy which we cannot  afford at $50 a visit (our copay).  We made a promise to God to stick together for better or for worse and we will do that.  We will not allow a financial situation to dictate our marital status.  Thank God we have never fought about money because if we were the type that did we would be sunk!  Quitting our jobs is not in the cards either.  We both enjoy our jobs and look forward to the time away from home and stress of home.  Don't get me wrong- work is stressful too though.  My manager recently left our facility so I am now the interim ICU manager as well as still covering my previous ICU supervisor duties.  It was a lot for 2 people to handle and now it is just all me.  My boss was going to really be a huge support to me and then suddenly she was diagnosed with a very aggressive breast cancer and she will be gone for quite awhile also.  So I am feeling a heavy weight to carry at work but I know that God will provide me the strength and wisdom to get through it.  The ICU staff is so supportive of me and back me 100% which is so helpful.  Anyway, so back to the money situation.  I got in touch with an old high school friend who has a special needs child also.  Back up- we are on the medicaid waiver wait list which is about 8 years long.  My friend told me about a way to get to the top of the list with amazing speed- like a couple of months rather than 8 years.  It is called a Rider 28 for the MDCP in Texas.  This will require a 1 night stay in a nursing home for Anna (with me by her side of course) but it will be so worth it.  It will get us immediate Medicaid which is what we need to continue to tube feed her and to get her into therapy.  They will also provide respite services so that Kenneth and I might get some sleep at night.  Anna is back to waking up at 3am and staying up for hours and it is taking its toll.  I will try my best to update as I find out more about this program and exactly how it works.  I am an educated woman who works in the health care system and I had no idea this program existed so I am certain there are others in the same boat.  Enough about the money- now for the emotions.  I was looking for a paper the other day and came across Carly's old work from Pre-k.  As I looked at the dates I realized this work was done when Carly was about 4.5 yrs old.  She knew her letters, she knew her numbers, colors, shapes, etc.  She could write her name first and last and the list goes on.  I know that parents are not supposed to compare their kids but I did.  Anna is 5.  Anna knows the letter A.  Anna knows 2 shapes.  Anna knows a couple of colors sometimes.  Anna does not know any numbers and cannot count to 5.  And that is when it happened.  I had a total OMG moment when I realized just how far behind Anna is.  Carly was not really advanced at that time- she was right on target so it is not like I am comparing to a genius.  I have just grown so used to Anna that I don't really realize sometimes were we really are with her.  She is making progress.  She is using the toilet about 10% of the time which is HUGE.  But still, I had to take a hard look at things and then I started to worry...about everything.  Will she ever learn her letters?  Her numbers?  How to read?  Potty train?  To drive?  To live independently?  To have a job?  My heart is so heavy!  I want to just rejoice and be happy that she is happy in life but I also know deep down that happiness will not get you through life.  And I worry that I am not doing enough to help her.  And I worry about if I should be starting a trust for her in case she always requires care and when we can't afford her care now where would the money to start a trust come from?  I know God has this all under control.  I know this logically.  But my heart is heavy and painful.  I do believe God will take care of things no matter what but I also believe I have to do my part but I don't even know what my part is or what it should be.  And so here I am.  Have you been here?


  1. Thinking of you all! Thanks for the update. :)

  2. Hi Jamie,
    I found your blog while googling microvasive g-buttons and was surprised we live in the same area! We live just north of forth worth and have 5 kids who we are homeschooling they are 9, 7, 4, and 2 year old foster twins we are very close to adopting. One of our twin daughters developed an almost life threatening kidney disease a few months after she came home with us (she was 17 months old) and spent the better part of 4 months hospitalized and several weeks on a ventilator. We also recently learned of a new rare GI condition she has, hence my search for the feeding tube she's receiving next month at Cook Children's. I would love to chat with you if you have the time! My email is I am so sorry you've had to walk through so much pain on this journey, I know you know God always uses it for good, but it still hurts. I had a thought for you regarding the formula your daughter uses and paying for it, though I do hope this program to receive medicaid your friend shared with you is successful! Are you able to do a whole food blenderized diet for her? I have talked with one of the nutritionists at cook children's about this and she said they had several parents who had done it successfully and that she could give me a lot of tips if that's what I wanted. Maybe that's helpful and maybe it's not, but I wanted to share just incase it was!