Tuesday, July 24, 2012

poop poop and more poop...potty training at its best!!

well we have all been enjoying our summer...well as much as you can in 100 degree weather...We have appreciated the rain we have received the last few weeks.  I also have to say we have enjoyed the good run of no surgeries for Jack...it has been over a year since Jackson's last surgery and we can not Thank the Lord enough for his continued stable health.  He truely is a testament to God's goodness and promises.

we have been working on potty training for the last year.  Jack has done remarkably well despite mom and dad's frustration...he has almost complete knowledge of urinary urgency...however when He says he needs to go...you better be where you need to go...or find a local tree...cuz he can't hold much.  HOwever we have been told this can be trained to work later through biofeedback training.  HE just needs to be a bit older.  We are so super excited for this news.  I think you all remember my tears after his last surgery when they were saying he might have to be catheterized ever so many hours....not what i wanted for my baby...and I am so very thankful that we will not have to do that.  So, that brings us to what we do have to do...

do to Jackson's imperferated Anus...he was not born with all the muscles that the rest of us have.  The Doc's have been super excited that he is able to get formed poop out of his butt hole at all...that is how little muscle he has down there.  So we were optimistic at the beginning and we gave it a good run...but I have been persuaded to go for what they call a MACE procedure.  the frustration and disappointment for Jack was too much to take and was starting to lead to things like lying cuz he thought he would get in trouble for a pooping accident...not easy for a 5 year old to separate.  We contacted his doctor about a month ago now and she has gotten the ok from all of his other doctors and we will be going ahead with this procedure this fall.  (I was actually shocked when they called we could have gotten in in August...however not knowing what is happening with this babe...I am not prepared for recovery and a new baby at the same time).  So we will plan it for late September or Early October...we want him to avoid being the stinky kid as much as we can and give him the best life we possibly can.

the MACE procedure will be another port on his stomach (it is completely reversible for when they learn to create new sphincter muscles some day).  We will do an enema in this sight and then he will have to sit for 1-3 hours on the toilet waiting for it all to come out...but then he will be cleaned out for the day and will only have to worry about going pee while he is at a school.  We are a bit concerned for the wait time...as he doesn't like to sit for any amount of time on the potty...so we are working on some solutions to pass that time...possibly even getting him a device (IPAD or I TOUCH) where he could watch movies, play educational games, doodle, etc.  So we will see...maybe it will be what we ask for for Christmas from everyone.  they can just donate to the Jackson IPAD fund.  :)  We will do what we can to make it so it doesn't interfere too much with his daily life...as that is the point of choosing to do the procedure in the first place.  We would love to have prayers that it is 100% successful and that we don't have the complications that con come with it...and also the transition for me as a mom, that i can have the patience that is needed to mother three and do what is needed to support Jackson in this new adventure.

MACE  here is a link that descibes the procedure...

thank you always for all your love and support...we would never be where we are with all of this without it or with out our faith in the Lord!!

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