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!!

Tuesday, July 17, 2012

Anticipation or Anxiety...

I find myself full of emotions lately as we enter week 34 of this baby girls pregancy.  Lots of memories have come back, some good and some of those feelings you wish you never would remember as they are gut wrenching.  Both Jackson and Avenlea were early arrivers...both in drastically different ways and for very different reasons.

I think I am more reminded by Jackson's birth as I have been chatting with other individuals who have been expecting babys in the next few months that are expected/known to have medical issues.  it is such a struggle even having been there to have the words, to know how to reach out...you want to be helpful...not intrusive. Most of the time...I still don't have the words...as I have been there an I know how helpless you feel as they wheel you babe off to surgery at hours/days old.  You know God is in control...yet at that moment nothing seems to bring you comfort.  However, I do remember the amazing feeling that came over me as I witnessed friends and family praying for Jackson or for us.  I also look back an I can see God's hands on him an on us...an the amazing support we had all around us.  I got to watch Jackson be prayed over just last week...it was amazing to see him beem as a man he had never met before prayed for him and called him by name as he asked God to heal his little body.  In that moment I new God and Jackson had chatted, maybe even met already.  On our way home that day Jackson had lots of questions and I love that these conversations have opened up between us.  I feel this will definitely help us as we approach his next surgery.  I don't know if its the arrival of baby number three, the mega pregancy emotions or the idea that we have made a HUGE decision to go forward with another surgery for him...but Jack and his health have been on my mind alot lately...more to come I promise about Jackson's progress and what is next for him.  (that is another post).

Avenlea's birth was a bit different and could so happen again.  I find myself getting anxious and watching for signs of water leakage at every trip to the bathroom.  I find myself anticipating with excitement and also some anxiety...as there are so many unknowns.  As much as God and I chat about how he is in control and I know from experience he doesn't give us more than we can handle at one time, I still find myself worrying about the what ifs...I know I know...you think I more than anyone...would have stopped that right??  Yeah no!  It is simply hard to wait to just see what happens.  I remember three years ago being so shell shocked..which sent me into a tailspin when we were told Avenlea was going to be born that day.  (I apologize for those that came to visit...and just watch me cry)  Being so unprepared made me feel helpless...but then on the other hand we still I think didn't believe everything was healthy or going to be alright...and yet it was...she has grown and developed exactly the way she was suppose too.  Yet it made her birth just a bit more traumatic.

So baby girl on the way (yes I know...she still doesn't have a name)....I feel so ready for her...she has a nursery, a carseat, two siblings that are waiting for her with tons of love and attention to give her and a mama that is so excited to meet her, yet wanting her to grow as strong as she can before she chooses to come (despite the puking 2-5 times a day...and sometimes more).  I pray for her everyday and pray for me...that I will be prepare by God for the emotions of her birth and for the physical demands of taking care of three.
I appreciate all of you that have prayed and our continuing to pray for us....this is a bit of a ramble and for that I am sorry...I just wanted to get my thought this morning down in writing...

And when there's no way to feel better in the moment, we have to place our feet on the only solid ground there is—God's truth.

His truth won't shift with feelings.
His truth won't drown in a sea of tears.
His truth won't leave you even when your gut honest cries don't sound so Christian.

totally needed this reminder from my morning devotion this morning.  I am so blessed to have a faith to lean on in times of emotion and struggle.