Working the progress...

We are working on the progress of things here.  I talked with McCrocklin Mobility about our situation, they said we would need to come in for sure to get pricing (which we will do soon) but just from our chat on the phone, they said that we would need a full size van.  The lady I spoke with explained that we could even get it set up so the kids wheel chairs act as their "Seat" in the van so we wouldn't have the tearing down and setting up each time we need to use them.  That would ROCK!  Both the boys have tilt wheel chairs and our daughter has a regular one. 

Joey uses his more frequently because his muscles are not growing and developing as they should. Because of this, his body uses more energy to do things like walking and getting around is leaving his energy low for playing.  The metabolic doc we see felt if he started using his chair more than he would have more energy for being a kid.  His also is more supportive and tilts back for fatigue and sleeping.  It is also designed to keep him safe if he would have a seizure while sitting in it. 

JJ uses a tilt wheel chair also, however not as frequently.  On days when he is sick, he needs the added support because he gets more "floppy" and his energy is low because of the illness.  Also, if we are having a long day of appointments or we are some place that requires lots of standing and walking, he needs it then as well.  Mito truly affects their energy level.  The more energy you spend, the harder it gets for you to function. 

Abby has a regular wheel chair that she utilizes for standing and walking.  As she has grown, she has more and more issues with standing and long distance walking.  Often, a trip to Wal-Mart is too much for her.  This gets tough on her as she doesn't want to use the chair but she has come to realize on her own that sometimes it's better to just use it so that later she can have more fun playing.  It's tough she has come to that understanding! 

Our van is so small that all three of these chairs get completely torn down and stuffed... yes STUFFED in the back of our van. We had to remove one of the seats in the back in order to do so.  The chairs get harder wear and tear because of this.  As you can imagine too, it's quite a process to unload and get everyone situated. 

Please join us in making this possible! 

We have bracelets for $5 each (see last post) and then you can also donate to the right of this post any dollar amount you like!  That money goes into a designated account that wont be touched until time to make the purchase and it's tax deductible! Thank you!

Mito Bracelets

We currently have our Pfohl Of Hope bracelets.  These bracelets are special to us in numerous ways!  First off, on one side, the scripture reference, Jeremiah 29:11 is written there and it talks about how God has a plan for each of us and that plan is to prosper us and not to harm us.

I think for us this passage is so special because it is a constant reminder that even though our kids have Mito, no matter the outcome, God has a plan for their lives!  We may not understand it today, but He truly does!

Second, on the other side, it says "Pfohl Of Hope"  we wear that proudly because we do have hope!  Our lives aren't measured at all by Mito!  They are measured by how we live!  We have hope that there is a purpose in all of this! We have hope that there will one day be a cure for this awful disease!  And we have the hope that we have each other today!

Third, is the color.  Green... this is the awareness color for Mitochondrial disease!

We have several of these from another fundraiser we did.  If you'd like one, they are $5.00 each.  If you would like several to sell, they remain the same price and we would be happy to get them too you! 

Thank you for continuing to pray and for the support!  Remember, you can purchase these or donate any dollar amount you like as a tax deductible gift! 

The van project!

As many of you who know our family, you know that our kids battle Mitochondrial disease!  We are in desperate need of a van right now! Our van is not only too small for the growing needs our kids have and the amount of medical equipment it takes to keep them healthy.  But our van is also on the verge of it's death.  We need something soon!

Our goal is, by April at the latest, to van shop!!!  So, would you help us!?!  You can be a part of making this happen!  You can take part in fundraisers we are doing, you can donate any amount of money you'd like to the right of this post and get a receipt for your taxes, you can volunteer your time to head up a fundraiser for us and YOU CAN PRAY!!!  You can pray for the miracle it's going to take to get us the van that we need to make the many trips that we have to medical appointments!

Thank you for joining us and stay tuned to watch this van project happen!