Sunday, January 13, 2013

18 months later.....

One of the many afternoons of patching.
Finally an update on Levi's on goings.  So many of the daily life activities of his our life now seem so "normal" to me, it's hard for me to recognize that these things are not "normal", they are the components that make up a child that is so, so SO much work to care for.  A very, very sweet child, that makes it all worth it.  So let's get started.....

I've always preferred to get the bad new first, so here it is.  We lost the long, hard fight to save Levi's right eye.  It's amazing how language or choice of words makes the reality of his vision easier for me to cope.  I prefer to use the words, "no vision" in his right eye, rather than the "b-word"...blind.  That one stings.  Eyes are funny because you don't realize that most of us have a back up, that if something were to happen, albeit freak accident to one of our eyes, no biggie, we'll be thankful for the back up eye.  Levi's running off the back up and so we work to protect it.  

We were patching 3 hours a day for the last several months in one last ditch effort and over those months we had moments where we thought over and over again that we were succeeding.  We came to find out that Levi is an expert cheater, and that if there were the slightest opening out of his left eye, that he would appear to be seeing out of his right eye.  I became cautiously optimistic that we had done it, we pushed through and did it!!!  Then time and time again, we figured out another way that Levi had tricked us again.  As this went on I became more and more certain that he couldn't see anything out of his right eye.  I started to welcome the ending of this torture for him (and those trying to help him) and almost couldn't wait to get to the appointment so we could end it already.  But then there was that nagging, "what if" that always crept us.  What if we just patched a little more every day, or if he would suddenly break through.  Over the last three months my will to keep his eye was broken.  It just couldn't take anymore and I wanted to just move on.  So as we went to his doctor, I expected everything that happened.  I knew. I knew what we would be told, but somehow it still hurt in the moment.  

Ice skating with Make-A-Wish
The doctor held up a toy piggy and asked Levi to point to it while the doc covered his left eye.  In all of his charm, Levi confidently would point to the pig, missing 90% of the time, obviously guessing where he would be next.  Then the doc got out a light.  He asked Levi to tell us what he saw, he answered in a sweet enthusiastic voice, "A pigeee!"  Then as the light was placed directly in front of his eye, shining in a way that would be painful for anybody, Levi said nothing.  It was clear and so sad to witness.  

Levi now wears glasses now, which are required by his doctor to protect his eye.  Thankfully, Levi doesn't mind wearing them too much and he look adorable in them!

Moving on to happier things now.  Levi has started growth hormone and wow!  It has been so fun to watch his body change and grow and get so much stronger.  At the last measurement he had grown 3" in 3 months. This med is administered in the form of a daily shot.  Fortunately shot are not something that have ever bothered me too much.  But then try sticking your baby!  I haven't been nervous like that in ages.  As we did it for the first time, Dan and I were both hesitant and I was shaking!  Fast forward a couple months and it is just part of our normal routine.  Go upstairs, bath, jammies, brush teeth, shot, read, bed.  He always liked to participate and press the button and turn the dial and then count to 10 as the med is injected.  Such a trooper.

All of his other meds have been quite stable.  We only had one issue and had to spend a morning in the ER.  Levi got to see some of his favorite ER nurses and we got to remember how much we don't like being in the hospital.  We got things sorted out and got to head home in the afternoon.

One of Levi's conditions: Diabetes insipidus (DI) is a condition characterized by excessive thirst and excretion of large amounts of severely diluted urine, with reduction of fluid intake having no effect on the concentration of the urine.  Okay, so now try to potty train.  Ya, exactly.  Over the past month we have made huge strides in this area.  He stared to wear undies at school, with good success and then we started to integrate them into his morning routine.  Then things would always fall apart after his nap. He had to go to the bathroom every 10 minutes all while not able to see (his patch was on from 3:30 to 6:30 on most evenings) and that just aggravated his patching all the more.  Since we have given up the patching, he is keeping dry most of the time, only having accidents when his DI is going crazy. (evenings)  It has made it a little challenging for me to go anywhere in the afternoon since he has to use the restroom so frequently, but we deal.  As you all know, store bathrooms are almost always at the back of the store, so imagine trying to get the three of my boys all back there, while one is saying, "I have to go, really, really bad."  

As part of our bi-annual review at physical and occupation therapy, they always ask what my goals are for Levi.  It always struck me as odd, because I assumed our goal was to return to "normal", to like Levi was before.  Now that I understand that we are working with a new normal, it makes more sense.  Anyhow, one of my goals was for Levi to be able to run and I am glad to announce that he is able to run.  He's invented a new kind of run and he loves it, usually squealing, "See how fast I am?!?!".  It's a special kind of "fast", but it's fun to see him enjoying himself.

I think this may wrap up the summary of where we are today.  I thank you for hanging in for this long post.  Please keep Levi lifted up in prayer this Tuesday January 15th, as he has his bi-annual MRI.  He will also be receiving injections of Botox to his calf to help relax some of the muscles that involuntary fight him when he tries to walk.  We head into these MRI's with the hope and expectation that there will be nothing....but that fear of the possible sometimes pops up.  Plus they are LONG days, as we have to get there at 5:30 and not eat or drink anything until he starts at 7:30.  And then pray for me as I get the bill for all of the above.

Speaking of medical bills.......have you considered joining us for the Mitchell Thorp 3K Fun Walk/Run?  Any form of support would mean the world to us, as we can continue these efforts to rehabilitate Levi and keep him healthy.  Click here to join the team/sponsor Levi  For more information about the walk Walk Info Click here

Wednesday, January 9, 2013

Get your walking shoes on!

We are excited to share that we have joined forces with the Mitchell Thorp Foundation in the upcoming 5K Fun Walk/Run to raise funds for Levi's continued care and recovery.  They are a foundation that specifically focuses on supporting families whose children suffer from life-threatening illness, diseases and disorders.  We feel so blessed that there is a foundation out there that is able to help us get through this next phase of Levi's recovery.  I haven't been great about keeping the blog updated, but will commit to getting up some of his recent on goings, his recovery and some pretty hard stuff that we've determined over the last several months.

Please consider joining in the fun at the walk on Feb 2,  we plan on having a lot of fun!  See website and flyer for additional details.Event Details.  Please feel free to pass this along!  To provide directed sponsorship to Levi's team click here.