Tuesday, March 15, 2011

This was our CRAZY temperature graph for the last five days and our coming home pics!!! Parker sure missed his TOYS!




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Miracles Still Happen...

Hey Everybody...
 We're Home!!!!  Parker went all night fever free and into this morning!  Praise God!  What a nasty virus.  I hope and pray that I never have to watch my child go through this again.  Home never smelled so sweet!  We are a true testament to what our GOD can still do!  He was preforming miracles when he walked this earth and He is still preforming them now!  AMEN! ...as Parker would say!   Thank you all so much for the prayers and concerns.  It is so wonderful to know that our little boy holds such a special place in all of your hearts.  I met with the doctor this morning and he said that we will need to still be very careful with Parker though.  Too much Too quick of course would be very detrimental to our progress.  So for the next few days monitoring Parker is crucial.  We will still need to basically do everything they were doing there, just from home.  We were up again at 4:30 am for more blood work in the treatment room.  Parker was sleeping so good and we had to wake him.  It adds a whole new perspective on the old saying "Rude Awakening"!   But...all of Parkers' blood work came back normal!  There are a few cultures that are still pending, but they will be notifying us of that as soon as they are completed!  Dr. Haun did say that the number one reason we were able to come home today was because "they were doing more TO Parker than they were FOR Parker at this point".  So he let us know that it is likely that his fever may spike back up, but if it reached 104 again that we would of course need to return!  We see our pediatrician tomorrow for a follow up with him, since he admitted us, so pray that it goes well.  I don't know about you but I loathe "children's waiting rooms" with a passion.  I feel like things just jump off the chairs!  Anyway...please continue to pray for us over the next few days until we are fully healed!  Parker is so sweet, and he has been such a trooper through all of this madness!  It will be so nice to sleep in our own beds tonight with no interruption!  Except from mommy for temp checks!  No more needles! And no more tape!
We love you all so very much...
Love In Christ
The Crafts

Monday, March 14, 2011

Hey Everybody...
We have had a much better day today....thank you Jesus!  Yet another miracle.  Early this morning when I wrote in... I was just about ready to fly our baby to another hospital.  But...after our last fever early this morning around 3:30 am, Parker has only had one real spike in fever, and that was about an hour ago.  We spiked back up to 102.5!  They gave us some more meds and we have at least controlled it and the last temp check was 99.5!  Which of course make me feel so much better.  Throughout the day today he carried a fever of 101 or lower so not too much to fuss about there.  Interestingly enough he did eat a great breakfast this morning and he didn't eat lunch but made up for that at supper.  He is still not taking a bottle for us.  But he is on IV fluids are a huge contributing factor for that.  Hopefully, if through the evening, he can keep that fever down we can look at taking the IV out and offering more fluids by mouth.  Parker had not pooped in 4 days so they gave him something to help that along and boy did that help....The largest on record here at the childrens hospital weighing in at a whopping 370 CC's which is equivalent to 12 ounces of poop!  I know that he has to feel so much better!  The nurses were in shock and speachless!!!  Sort of a funny moment in the midst of all the chaos!  We finally saw the Infectious Disease doctor today...and I really like her alot. She is from the famous St Jude Hospital!   She was very thurough in her analysis/diagnosis for Parker.  She feels extremely confident in saying that this is only a VIRUS.  A nasty one at that!  She graphed out his fevers for us to see on paper and there is light at the end of our tunnel.  Parker's fevers have made there Peak and are on their way down slowly which she says is very encouraging!  We will be taking more labs in the morning just because they are still watching the inflammation in Parker.... normal level is 5 and Parker's has jumped from 20 when we came in to 50.  So in the morning if that continues to rise then they will be looking more towards bone scans and things of that nature.  Parker's Echo came back beautiful this morning and there was no sign of any inflammation in his coronary arteries....which means that Kawasaki Disease has now been ruled completely out!  THANK GOD!!! So we are hoping to get lots of rest tonight.  We just got back from the treatment room again because his IV was not cooperating so that is never any fun.  Please keep those prayers coming our way because miracles are happening all around us! 
Love In Christ...
The Crafts

Please Pray Specifically....

Hey Everybody...
It's four o'clock in the morning and I of course can't sleep.  While I was asking God yesterday in my prayer time to show me where and what it is we are supposed to do with Parkers' situation, the Holy Spirit led me to the story about "Jesus heas the boy"that I shared with you in my last post!  I have to tell you all that the Holy Spirit works in such an amazing way.  I am looking for answers so strongly right now.  Both Willis and I have this unsettling spirit about this whole thing...but we can't put our finger on it.  So I "GOOGLE" of course lots of things and when I was in search of some peace and answers yesterday without my Bible in hand I googled scripture about fever.  I never even knew that there was a story in the bible about a miracle performed by Jesus on a little boy...let alone with a "High Fever".   So let me explain to you all what I think about this nobleman that traveled to speak his love about his son to Jesus and how I truly feel that my questions have been answered through this story.  The nobleman had a little boy, and so do we!  His little boy had a High Fever and so do we!  If you research the story it tells us that he traveled by horseback to get there as fast as he could.  Well...it is 4:09 in the morning and the Holy Spirit woke me to Google "how far the nobleman traveled to get to Jesus and how long it took him and what type of transportation if any did he have?" So I did just that and found a map to figure the distance between Capernaum where the nobleman lived to Cana where Jesus was performing miracles and found that it was about twenty miles or so.  They didn't have vehicles then so I googled how the nobleman traveled.  I then found that he had one of his servants saddle up one of his fastest "horses".  So this led me to figure out "How fast  it would take to travel 20 miles on horseback..."  it may seem farfetched to you I know but just listen....To travel horseback 20 miles it would take about an hour.  You may be asking yourself where in the world is Amy going with this and I would say to you that I feel like the Holy Spirit led me to this story for a reason.  I don't think we are going to find our answer for what Parker is dealing with here at Richland.  We don't feel like we have some emergent, about to die situation with Parker, but something just isn't right.  He has had fever now for ten days and no one can find the answers.  Something keeps telling me that our answer is at MUSC....which going back to the story isn't twenty miles away but if you take into consideration the time it took him to travel by horseback it equals the time it would take us to get to MUSC.  Today we have the Infectious Disease Doctor coming to see us and I hear that she is great!  So we are definately going to hear her out...but so much of my spirit says that MUSC is where we need to travel!  Please pray hard for us today that our decisions will bring peace to our spirits.  Parker is just starting to make us a little bit nervous being that it has been ten days and all with a fever and that he really isn't eating at all.   The nurse just came in and his temp is creeping back up again and he is shaking all over.  Poor Baby....but help is on the way.  Please pray that the Holy Spirit will speak louder than ever to us today as parents on what our next move will be. I love you all and thanks for hearing me out!
Love In Christ
Amy

Sunday, March 13, 2011

Jesus Heals A Boy...

Hey Everybody...
Parker is sleeping off yet another fever. We are not getting a lot of sleep at night right now...everyone has been in and out every hour or two for temp checks...so we make up for that during the day.  All of the test results are back and there has been nothing found in any of the blood tests that were performed thus far.  We were told by the doctor this morning that she and the other doctors on the floor have completely reviewed Parker's history and results and they are all "perplexed"...and still have nothing to go on.  There were some increases in his blood work that they will be continuing to follow closely.  One of them showed inflammation somewhere in his body...not quite sure where, and the other showed his white blood cell count to go from 5000 to 11000 over night.  This is still within normal range but the jump in several hours time may give them something to go on.  They will be repeating the ECHO either this evening or in the morning sometime.  The cardiologist that read his report last night was unable to get a clear look at his coronary arteries and they have to make sure that there is no swelling in that area.  And not to alarm anyone...but...they are going to also do a cancer screening on Parker just to rule that out as well.  Parker is still not eating real food or taking more than an ounce of milk occacionally so that is concerning for me!  He is still receiving IV fluids and has for the last fours days.  So please pray that his appetite will increase.  Also...in the morning, Willis and I will be meeting with the "Infectious Disease" team.  They want to get another set of eyes on everything since we are unable to get a handle on the temperature.  They specialize in RARE THINGS, so maybe they can shine some light on our little man!  As you all know this is day NINE for us having fever.  The history of the fever is strange to them because it comes and goes withing two hours time.  One minute he seems like he is finally getting back to normal...laughing, wanting to play and saying words and the fever reduces itself and in the next minute we are at 104 again extremely lethargic and only wanting to sleep with a rash all over his chest...even with meds.  Please pray that we will find something and if we don't then we will be sent somewhere that can figure out what in the world is going on. Lots of uncertainties still...but what a pleasure to know that in the midst of all the unknowns.... God is our constant hope. You may not remember but there is a story in the bible about Jesus healing a boy....I read that today and thought I would share the story and my feeling about it with you...

Jesus Heals A Boy...John 4:46-54

"Jesus came to Cana in Galilee where he turned the water in the six large water pots into wine. 
There lived a nobleman in Capernaum in Galilee. He had a son who has a high fever.
The boy was very ill at the point of death. When he heard that Jesus had come out of Judea and was in Galilee, he came down to the place where Jesus was. He begged Jesus to come down to Capernaum and heal his son.  Jesus said to the nobleman, “You people will never believe unless you see miracles.”  The rich man said, “Jesus, my son has high fever. He is very sick. Please come down quickly because my son is about to die.”Jesus said, “Go home. Your son is healed.” The nobleman believed what Jesus said that his son is already healed. When the nobleman reached his home at Capernaum, his servant came out to meet him. The servant said, “The high fever had left your son. He had been completely recovered to health!”The nobleman asked his servants, “What is the time when the fever left my son?”The servants said, “The fever left your son at seven o’ clock yesterday.”
Then the nobleman remembered that it was at that very moment that Jesus told him that his son is healed. And so his household came to believe in Jesus.....

You know the nobleman didn't fully believe in Jesus until the miracle was performed on his son.  But once he saw it...he believed!  We know that we believe in Jesus...we have seen the miracles upon Parker's life... time and time again...Instead of looking at things as why us anymore...I have learned to look at times like these as a testimony of miracles.  It may take a little more time...but my God knows why we are here.... and it might just be for that nobleman or noblewoman that needs to see the face of Jesus through our little boy!
Love In Christ...
The Crafts

Still Getting Stuck...

Hey Everybody...
Still no updates!  Our fever this morning is still a BIG 104!  They just came back in and did some more blood work!  They didn't wait long enough to give the Tylenol because he was still upset from the blood work that he threw up all over our nurse!  They gave Parker a suppository instead so hopefully it will work faster!  Anyway...as soon as we know some more, we will update!
Love In Christ
The Crafts 

Saturday, March 12, 2011

A Quick Update...

Hey Everybody...
We still have not heard or seen from a doctor as of 10:20 this evening.  We have been told that some results are in and others we are still waiting on.  The blood work that is back, is all negative!  Praise God!! The resident came in and spoke with Willis and I earlier today and said that they have taken some of the blood work to the labs to see if it grows any bacteria...which takes a couple of days!!! So still again...waiting on that.  Parker has finally gone to sleep now and his temp has gone down to 102.0 which is encouraging seeing the drop from 105!  Keep praying though...we need all we can get right now.  Love you all....and we'll update soon.
Love In Christ,
The Crafts

At the hospital again....

Hey Everybody...
First of all, I have to tell each and everyone of you thank you from the bottom of our hearts!  We are so completely blessed to have you by yet again for another episode in Parkers' little life!  We are continuing to wait on further lab results from today to see if anything comes of that.  So we will update as soon as we know!  To catch you all up on what our week has been like...as some of you may know we were in the ER with another scary "seizure" Sunday morning with a fever of 103.6.  We treated that and were sent home to start on anti-seizure meds to help sustain any lingering seizure activity.  Parker has been on that now for 3 days and has done well, other than running in and out of high fever peaks!  When I got Parker up yesterday morning his fever reached 103.3, so of course I made a doctors appointment.  Come to find out Parker had a right ear infection, we were given meds and sent home.  We took his temp while we were there and it was 99.7.  so we were thankful that it had finally come down.  Once I got home with Parker a few hours later I handed him to Willis and he said "Amy he is burning up!" Took the temp again and it was dangerously high at 105.0!   Parker turned really blue and pale and just seemed to be fading quickly.  We went back to the doctors office and he told us to head on over the the hospital!  We were admitted last night to Richland Childrens Hospital and not much has changed.  We are back up to 104.8 again, on our 2nd step of lab work and waiting to speak with the doctor about what our next step is.  Willis and I are certainly concerned about the amount of Motrin and Tylenol that we are giving him. We are on nine days now of fever and the level of fever is not easy to look at.  We are looking at an area of concern called "Kawasaki Disease"as a probability.   We are not sure if this is it or not but they did an ECHO today along with the another set of blood work to rule this out. We will update the situation as we hear of any changes.  Please continue to pray that we will find the source of the problem or if we can't find source and it is considered "viral".... then please pray that the fever will go away! 
Love In Christ
The Crafts

Tuesday, March 8, 2011

For all that have been praying...."Verily, verily, I say to you, he that believes in Me has everlasting life" – John 6:47

Hey Everybody...
Just a real quick update.  As you all know Willis' uncle Howard had an aneurysm last week and we really had seen no change in him since. It was decided  today that Howard would be taken off of all life support and given the opportunity to thrive on his own...and at 5:30 today, uncle Howard went to be with Jesus!  Our family has some ruff days ahead of us and we are overjoyed to know that he is with the Lord but will be missed deeply by our family!  Thank you all for lifting him up in prayer this week.  Please continue to pray for our family.  Of course Parker and I can't travel this week due to his seizure activity so it won't be easy for me not having closure...but Parker is not anywhere near ready to travel at this time.  Not to mention being two hours away from all of his doctors could be a real problem if something were to happen.   Please know that we love you all dearly and can't say enough about your constant support and prayers. 
Love In Christ
The Crafts

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future" -Jeremiah 29:11

Hey Everybody...
Just wanted to update you all on where we are in things.  Yesterday, Willis and I took Parker to his neurology follow up visit.  At this point, he feels strongly, that Parker is "dangerous" to himself without medicating daily with anti-seizure medication.  He also feels that Parker didn't have a febrile seizure Sunday (which of course is brought on by high fevers), but just another complex seizure.   Febrile Seizures last around ten minutes, and Parker seized for forty minutes.  He told us that the high fever Parker presented was more than likely a catalyst with his seizure, but not necessarily the main driving point behind it.  Parkers' brain is complex and obviously there is some misfiring in the brain causing the high sensitivity for seizure activity.  He told us again that Parker scares him and that he does not want to see Parker die from a seizure.  The length of time that you are actively seizing is crucial to brain activity, and he is not comfortable managing them with suppository's from home.  We have been given a anti-seizure medicine to be filled today and start him on.  We are very nervous about  medicine.  All of the possible side effects, and forums that we have read would make any parent question the administering of the drug.  But on the flip side of things it is hard to think about Parker having another seizure and either changing him forever with brain damage or even death.  So, I guess we take the meds and pray daily for low side effects.  Please just keep us and our family in your prayers.  We still have no change with uncle Howard and are still waiting on some things to become final before they take him off of any support.
Love In Christ,
The Crafts

Sunday, March 6, 2011

"Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you."- 1 Peter 6-7

Hey Everybody...
Just wanted to let you all know that we are back home from this morning.  Parker had another seizure early this morning.   I was doing all of my normal routine mommy duties this morning, and when I went in to wake him up he was face down in his crib laying in throw up!  When I picked him up he was shaking all over and was extremely HOT!  Once I got him undressed, I had Karlyn bring me the themometer and his temp was 103.6 and climbing!!!!  Willis had just called the house this morning to check in with us and I let him know what was going on and that his temp was high...but that I was going to give him some medicine to get the fever down and I would call him back a little later.  Well a little later didn't happen because in a matter of minutes Parker went right into a seizure.  His little eyes went to the side again, and then his eyes eventually just closed and I couldn't get him to respond to me.  Karlyn was my big helper this morning.  She brought me the seizure medication and knew exactly where it was, she called the grandparents for me, called her daddy and let everyone know what was going on while I was on the phone with EMS.  Thank God for the seizure suppository that they gave us because Parker was only under about 40 minutes this time as opposed to 1.5 hours last time.  So it does help!  They ran all kinds of test once we got to the hospital and all of them came back negative, so we will be back at the neurologist in the morning for our follow-up which may involve another MRI or EEG.  Be praying for our family this week though, not just for Parker, but Willis' uncle Howard.  We have been told that they will more than likely be taking him off of life support tonight.  This is never easy.  But in the midst of it all we have to know that God in in full control of our chaos.  We are never promised tomorrow.  That is why it is so important to love each other as if it were our last goodbye, our last hug, or the last time we see the smile on their face.  Every second spent with Paker is a moment not ever taken for granted.  We know that he is high risk until he is three but we're ok with that.  God has blessed us with his life more than you all will ever know.  Please continue praying for our family and we love you all so much!
Love In Christ,
The Crafts

Tuesday, March 1, 2011

Parker's 1st trip to the Ocean...

Hey Everybody...
As you can see, we went to the beach yesterday!  Parker had another follow-up with the opthamologist in Charleston, so we took complete advantage of the beautiful weather we were given.  We are still not ready for surgery yet!  So we will be continuing to patch him for now.  Our doctor has stressed to us that we will need to patch for half the waking hours again... which did not make me feel all that comfortable with our history.  As you all know, the last time we changed Parkers' patching to six hours a day, it threw him into a seizure and unresponsive for one and a half hours!  We have decided to start him out with five hours to begin with and then slowly increase to six this time!  The reason behind patching is to get Parker's right eye to stop bouncing. The bouncing is not near as bad as what it used to be, but is still too variable get a good percentage of degree for the surgeon!  If we went ahead with the surgery now and don't continue to patch then Parker will run a higher probability for repeat surgeries....and we don't want that.  So We PATCH!!!  Please continue to pray that his eye will become stronger everyday.  Our doctor did let us know that there is a small window of hope that the patching will be so successful that surgery may not even be necessary....which of course is our goal!  Anyway...we do have a prayer request tonight, Willis' uncle Howard had a brain aneurysm this afternoon and is at MUSC now in ICU.  Please keep our family in your prayers.  This has been very scary for our family today and we want nothing more than a wonderful recovery!  We hope that you enjoy all of the beach pictures and thank you for all of your support and prayers!
Love In Christ...
The Crafts

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