Friday, October 29, 2010

Hey Everybody...
I have been waiting to post updates on Parker's neurosurgery appointment because we haven't received the final word from the head radiologist at MUSC, so....I will just tell you what we know thus far.  I have to be completely honest when I say that I love this new doctor.  He was like a breath of fresh air.  The trip down to Charleston was nice, because our schedules seem to hardly meet up with all of Parker's appointments and work schedules, so we actually had time to talk and catch up while Parker slept in the back seat. When we got there, of course everyone was so welcoming!  And we didn't have much of a wait to see Dr. Glazier, which we so appreciated.  After reviewing Parker's MR's, Dr. Glazier said that in his professional opinion, he did not see any reason to scan Parker anymore!!!!!  MUSIC TO OUR EARS!!!  He said that there is no getting around the fact that Parker's brain is complex and that the ventricles are still dilated, but he said that they are showing no sign of growth in those areas, which is great!  His primary concern for Parker is his blueness that he still exhibits.  Now, we have been to so many different specialists that have tried to figure out why he is still so blue, and no one has been able to answer that yet.  Dr. Glazier said that if the right side of Parker's heart has a higher pressure than the left side then it would in return give his face the flush of blueness that we see.  Interesting Right?!  So he still wants to get the head radiologist to double check all of Parker's MR's before he gives a final say on the brain abnormalities.  And he is going to check with Dr. Bradley in regards to his blueness to see what pressures Parkers' heart was giving during his surgery last December.  He said that would tell us a lot!  I am so excited to finally get an answer from someone that seems to have it all together.  Like I said earlier, we are still waiting on a call from MUSC, but I feel confident that it will be a good one.  You know this time last year we were two weeks shy of almost loosing Parker.  He had lost so much weight and had feeding tubes sticking out of his sweet little nose.  Not to mention he stopped breathing several times at the Children's Hospital and had to be "bagged" for that.  What a little fighter he is though!  God's hand is so mighty isn't it?  He says that He is Mighty to SAVE!  I know that he not only saved our little man this time last year, but He was saving us right along with him, taking us deeper in our Faith with Him.  And I can not thank God enough for the little man that is sitting up in his crib, after a long nights sleep, blowing me kisses from the room across the hall, and saying Ma Ma right now!  I cry just thinking about how different our lives could have been and know that God is Mighty to save and He is worthy of all of My Praises!  Parker has a night light in his bedroom that shines on our ceiling  from his room.  And some of us would look at that light and say, close that door a little so the light won't shine in my face while I sleep.  But I have to say every time I see the light from Parker's room I see and feel the presence of God illuminating the ceiling and how it pours over on me like the crashing waves of the ocean.  I can almost hear Him say "See, I told you everything was going to be okay".  We are so much closer to God now than we thought we were three years ago.   And I think it is fair to say that we would we have picked another way to wake us up and take us deeper in faith besides a stressful pregnancy and open heart surgery on a four month old baby boy....SURE!  But God plans are always BIGGER!  And as we look back it puts a smile on both of our faces because we know now just how perfect that plan was!
Love In Christ,
The Crafts

Sunday, October 17, 2010

Our Little Monkey...



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Boo At The ZOO!!!




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Hey Everybody...
We had a blast this weekend at Boo At The Zoo!  I can't even begin to describe how cute Parker was as a "monkey" so I will definitely be posting some pics soon.  First of all though, I wanted to update you all on our appointment last Monday at MUSC.  I absolutely love our new opthamologist.  He is everything I had hoped for on the drive down there, and I am so thankful that I listened to that "still small voice"!  When we arrived for our appointment Parker was sound asleep...and the nurses did not want to wake him up....so they actually waited for him to wake up before they started the appointment.  What doctor's office does that?  I was amazed to say the least!  Dr. Wilson was so understanding about Parker's eye situation and has actually given us a patching technique that we will use four hours a day for several months.  During the appointment Dr. Wilson explained to us that Parker has zero percent usage out of his right eye, and one hundred percent out of the left.  Parker's brain is actually telling his left eye to do all the work, therefore leaving the right eye  "lazy" if you will.  Patching of the left eye (his good eye) will automatically tell the right eye to work harder, and strengthen itself naturally.  Unfortunately surgery is needed, but only after the percentage of usage increases.  He then let us know that Parker really doesn't need to be in glasses because the far sightedness isn't bad enough for them and that there was no rush for surgery, but our doctor here gave us a prescription for glasses and said that surgery would need to be very soon!  Interesting huh?!  Parker will also be in the "Astronaut Program" at physical therapy doing a "spinning technique" that will help strengthen his eye also.  He didn't seem to like it at first but he will get used to it as we go each week.  We will have a new speech therapist working with Paker on his eating habits also.  Since he is still not eating regular food and can not tolerate them without throwing up, the speech therapist can work with him on techniques to help him along with that.  Anyway, we dropped off the candy filled jack-o-lanterns and had a moment to speak with Dr. Bradley's assistant Cathy, who found us a neurosurgeon at MUSC, and Willis and I will be headed to Charleston again Friday to see what his thoughts are on Parkers' brain.  Please be much in prayer this week for us as we go for yet our fourth opinion for diagnosis on Parkers' brain.  I am really interested to see what his thoughts are after reading the three different diagnosis from each specialist, especially to see which one he agrees with!  God is so extremely wonderful isn't He?!  It is amazing to me the amount of Love that He has for us.  It's too much to wrap our small world around, but how great it is to be covered up with His blanket of Love each and every night.  We love you God, and we thank you for all of the blessings and answered prayers that you have given to our son and our family thus far.  And our prayer to you tonight is that you will place Parker's eyes in your hands and heal them along with his brain.  Continue to strengthen him daily and know that we will continue to honor you as his parents.  We love you God and thank you for all things.
Love In Christ,
The Crafts

While we were at MUSC on Monday we dropped off our chocolate stuffed Jack-O-Lanterns to the PCICU and 7-C...and boy did it put smiles on their faces!!!


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Mrs Sandra enjoyed seeing Parker again for the first time in ten months...and she was overjoyed to see how much he had grown!

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Saturday, October 9, 2010

Thank you Stephen for all you do for our great country...and thank you God for keeping him safe!!!


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Bath time at our house is a momentous occasion...


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..and his toys find a way to get water all over my floor...


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...it may not take long for Sir Parker to make such a mess...


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...but one day I'll look back at this messy splashed filled room...

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...and wish my prince frog was still making water puddles on my bathroom floor!

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On the road again...

Hey Everybody...
We are overjoyed to have my brother Stephen home from the NAVY even if it is only a week.  When Parker saw Stephen for the first time, he waved at him, smiled and went right to him.  It was such a sweet little moment.  Not to mention Parker looks so much like Stephen as a child...it's uncanny at times.  It's not easy seeing him once a year, but we are thankful to God for keeping him safe enough to come home.  I wanted to remind you all that Parker has an appointment at MUSC on Monday at the Storm Eye Institute!  We are going for a second opinion in regards to his eye surgery.  Our physical therapist said that she may want to try some type of therapy before eye surgery, but nothing has been set up for that yet. Hopefully while we are at MUSC we will be able to drop off Parker's MRI to their doctor of radiology for a third opinion....since our first and second seem to be confusing themselves with misinformation!!!  Anyway...we are going to be stopping by 7-C and the PCICU to deliver jack-o-lantern's full of chocolate candies for the nurses and doctors that assisted Parker in his recovery!  It is simply amazing to look back at where we were this time last year.  I remember with tear filled eyes of a baby that was struggling for his life daily, retractive breathing, race running heart issues, feedings through a syringe with tubing, $96.00 for 96 ounces of formula (aka Starbucks for Babies),of which Parker only held down 15cc's per feeding and would fall asleep with total exhaustion, loss of weight daily, jaundice so bad that he looked like a Clemson Tiger, bilirubin checks, trips to the hospital twice weekly for full blood panels for liver checks, weekly trips to our cardiologists, our first visit with our neurosurgeon, pulmonary synagis shots for lung weakness, the big switch for a new "christian" pediatrician with the help from our dear friends, while still trying to make the three month mark for open heart surgery fighting a loosing battle with the weight gain of ten pounds!  When I think back on these times and remember the frustration as a parents trying to make the best decisions for our son, I can't help but thank God for all of the unwanted stress and pain that it put us through.  God took an opportunity to strengthen our walk with him through our son and guess what....it worked!  It is such a mystery to me looking back at God's plans thus far.  And it is when you look back you see His perfect plan and say "Oh so that's why that happened....and it all makes sense doesn't it?".  The peace of God is unremarkable to me!  It is so perfect that it simply leaves you speechless.  Please be in prayer for us as we embark on yet another specialist in hopes to gain new options for Parker's eyes, for traveling mercy's as we travel down the most dangerous stretch of interstate in our country and that we will find the doctor of radiology that will be willing to review Parker's test results for a third opinion.
Love In Christ,
The Crafts