Sunday, May 23, 2010
Parker's MRI Update
Hey Everybody...
We have met with our specialist in regards to Parker's MRI.... and it was as we thought. The fluid is still there....and is significantly larger than what the ultrasound showed. We have been told by Dr. Morgan (Parker's neurologist) that the two can not be compared. It has been explained to us that an "ultrasound" of the brain is like a polaroid camera image and the "MRI" is like a NIKON D-5000.....so.....we have to do this all over again. I am not looking forward to the propofol injection again but Dr. Morgan has to see if the fluid is growing or if it is unchanging. If in fact it is growing then we will be looking at brain surgery to shunt Parker. The shunt will be permanent and will run from the posterior right ventricle to his stomach. So this is our claim as parents.... We are in constant prayer that God himself, in all of HIS glory will prove these doctors wrong! Willis and I are here to carry out whatever plans He has for Parker.... but in the meantime....we are in no way, shape or form going to claim this fluid growth in Parker's brain! The devil is a LIAR...AMEN?! So we are going to ask you all to please be very specific in your prayer time with God about the fluid on Parker's brain. We praise God in all of our storms and we have turned our eyes upon Jesus and laid Parker at the foot of Christ again for yet another miracle. We know full well that in Christ Jesus alone all our HOPE is found and He is our ROCK and our STRENGTH! What a priviledge and honor it is to place our child at the feet of our Father, knowing that not one hair on his head will be overlooked. His plan is perfect! Our family loves you God and we thank you for our storms! There is a song by Hillsong that is playing right now as you are reading this called "Healer" and the words say... "You hold my every moment....You calm my raging Seas....You walk with me through fire....And HEAL all my disease.....I trust in YOU....I trust in YOU....I BELIEVE you're my HEALER...I BELIEVE you are all I need.... I Believe You're my portion.... I Believe you're more than enough for me..... Jesus you're all I need....For NOTHING IS IMPOSSIBLE FOR YOU....YOU HOLD MY WORLD IN YOUR HANDS!!!!" How awesome is that! This song says it all. We love you all so much and thank you from the bottom of our hearts for taking time out of your busy schedules to pray for our little man Parker! Words can not even describe the love we hold for all of you in our hearts. Also before I close we did meet with the ENT Friday and Parker's Veins will always be dilated and have a blueness to his skin...."SO THE DR. says"....but we all know who is in total control of that don't we?! I'm just relaying the message. He let us know that he could not assure us that it will ever go away, and that the possibility is there, but he would not say either way. Basically, once dilated, always dilated. But....we believe in miracles! And that's all that matters. Thank you all again for praying for us and we will keep you updated on the appointment for our next MRI.
Love In Christ...
The Crafts
We have met with our specialist in regards to Parker's MRI.... and it was as we thought. The fluid is still there....and is significantly larger than what the ultrasound showed. We have been told by Dr. Morgan (Parker's neurologist) that the two can not be compared. It has been explained to us that an "ultrasound" of the brain is like a polaroid camera image and the "MRI" is like a NIKON D-5000.....so.....we have to do this all over again. I am not looking forward to the propofol injection again but Dr. Morgan has to see if the fluid is growing or if it is unchanging. If in fact it is growing then we will be looking at brain surgery to shunt Parker. The shunt will be permanent and will run from the posterior right ventricle to his stomach. So this is our claim as parents.... We are in constant prayer that God himself, in all of HIS glory will prove these doctors wrong! Willis and I are here to carry out whatever plans He has for Parker.... but in the meantime....we are in no way, shape or form going to claim this fluid growth in Parker's brain! The devil is a LIAR...AMEN?! So we are going to ask you all to please be very specific in your prayer time with God about the fluid on Parker's brain. We praise God in all of our storms and we have turned our eyes upon Jesus and laid Parker at the foot of Christ again for yet another miracle. We know full well that in Christ Jesus alone all our HOPE is found and He is our ROCK and our STRENGTH! What a priviledge and honor it is to place our child at the feet of our Father, knowing that not one hair on his head will be overlooked. His plan is perfect! Our family loves you God and we thank you for our storms! There is a song by Hillsong that is playing right now as you are reading this called "Healer" and the words say... "You hold my every moment....You calm my raging Seas....You walk with me through fire....And HEAL all my disease.....I trust in YOU....I trust in YOU....I BELIEVE you're my HEALER...I BELIEVE you are all I need.... I Believe You're my portion.... I Believe you're more than enough for me..... Jesus you're all I need....For NOTHING IS IMPOSSIBLE FOR YOU....YOU HOLD MY WORLD IN YOUR HANDS!!!!" How awesome is that! This song says it all. We love you all so much and thank you from the bottom of our hearts for taking time out of your busy schedules to pray for our little man Parker! Words can not even describe the love we hold for all of you in our hearts. Also before I close we did meet with the ENT Friday and Parker's Veins will always be dilated and have a blueness to his skin...."SO THE DR. says"....but we all know who is in total control of that don't we?! I'm just relaying the message. He let us know that he could not assure us that it will ever go away, and that the possibility is there, but he would not say either way. Basically, once dilated, always dilated. But....we believe in miracles! And that's all that matters. Thank you all again for praying for us and we will keep you updated on the appointment for our next MRI.
Love In Christ...
The Crafts
Saturday, May 15, 2010
What a compliment from God to be a Mom!!!
Being a mother to our children is such an overwhelming blessing from God for me! I have to say that when I had my first child, Karlyn, God placed her in my womb to rescue me from myself. There's just no other way to describe it. And what a beautiful way to change my life. I was so far from Him at the time, yet He chose to save me through a child! She is my saving Grace. Once my life started with her, my mother then became such a huge role in not only my life, but Karlyns' as well. My mother stood beside me and my broken roads for many years, yet accepted all of my misdirections for love. I never really understood the depth of love a mother carries for a child until then. And for that, I am truly forever grateful to her. I was so broken inside at the time and my "big plan" seemed to fall by the wasteside rather quickly. Several years passed and I prayed to God that he would bless me with a wonderful husband that would love my child as his own....and that He gave to me. I am now happily married to an amazing man that knows all of my needs and is not ashamed to have me as not only the mother of his children but his wife. We both agreed not too long after being married to plan for our second child. All of the prepartions were in order. We were so excited! And as you all know my pregnacy was very stressful. I had been given every scenerio in the book. Even being told that there was a possibility that our child would be born dead! There were "medical anomilies" all over the place. Nothing more than just a hurry up and wait situation with entirely too much information. I was so scared but, again God rescued me from my fears and held my hand every step of the way. After facing 1 week in the NICU, 52 appoinments in 3 months, 2 weeks of failure to thrive, feeding tubes, open heart surgery and now a DOC Band system for his sweet little head, we have so much to look forward to in our son Parker. I can not even describe the strength that God has instilled in me from the moment he took his first breath 8 months ago. As a mother all you want is for your children to be healthy. You always want that so called "perfect" situation. But God gave me more. Again my plans were not good enough for Him. And that's okay! I enjoy everyday that I can walk down the hallway of my home and see my children sleeping in their beds. Never do I ever take one day for granted because I know how precious life is. I have grown through my children and they teach me something new everyday. I pray that God will continue to trust me with His children and let me enjoy every minute of their smiling faces. As hard as things have been on us I would not change one minute of our lives for anything in this world. I adore being a mother and I am so thankful that God's plans are far more important than my own. I feel so fortunate to have such a wonderful mother. She continues to be a beautiful role model to me and my children, and I thank God himself for the women in our family, for without their guidance I wouldn't be the mother that I am today!
Thursday, May 13, 2010
Wednesday, May 5, 2010
Sorry So Lengthy...
Hey Everyone...
What a CRAZY week! Parker had his MRI on Monday. The original appointment was scheduled for 1:15 on Monday, but we asked that they move the appointment to an earlier time. Parker was going to be without solid food or liquids for 6 hours before the scan, and Willis and I were not looking forward to this at all. So after much prayer they called us back with an earlier time of 11:00am and we took it! We were so excited. We started our day as usual at 5:30am and he had Oatmeal and Applesauce and a bottle with rice cereal to help tie him over and headed for the Children's Hospital at 10:00. Parker slept on the way to the hospital and didn't cry at all. Praise God! Once we arrived they took us to his room and we waited for the sedation team to come and get us. Let me just say that we are so very proud of Parker. Three nurses came in and we had dreaded this moment (the placement of the I.V.) and Parker didn't even cry! Yep, you read that right, he DIDN'T CRY!!! We were all shocked! He took it like a man! Unbelievable! The nurses were extremely shocked! They said that they have never had a patient not cry especially a baby of his age and that they wished that they would have taped it so they could show it off to all of their other patients! Crazy huh? While we were waiting the doctor came in and let us know that the MRI machine broke and it would be more of a wait until they could start. So in the meantime we continued to keep Parker preoccupied while we again waited to go downstairs to be sedated and by this time it was 1:20 pm and Parker still had not fussed at us for a meal! We were able to walk over to the MRI door and hold him while they sedated him and boy was that hard. The doctor looked at me and said "Make sure you hold him tight and support his head, he will scream for about 10 seconds and then go limp". And that he did....And it was not easy. It was a scream we will never forget! It's never easy to hear your baby cry let alone scream in pain. We asked the nurse while we were waiting to get Parker back from downstairs "What on earth made him scream with the anesthetic Propofol" and she said that one of the doctors had Propofol a month back and his exact words were "Propofol will bring a grown man to tears"! I am glad that we didn't find that out until after it was administered. They told us that the MRI would only take 1 hour and after 2 hours of Parker not being back we asked if they were having any problems and she then let us know that the MRI broke yet again with Parker in it so they had to take him to a different room to finish. Parker came back to the room with us at 3:20 and he was monitored for an hour and said that we were good to go! Sunday night when we gave Parker his bath we had removed his DOC Band and his forehead and right temple were so irritated and red. The instructions for that said that if in fact the redness did not go away after an hour that we were to be seen immediately in Charlotte for an adjustment. SO, at 4:00 Monday after the MRI we headed to Charlotte. We were seen for about 30 minutes and turned right back around and headed home. Arriving home at 7:00 Willis took Parker out of his seat and said " Amy he's really hot"! We checked his temp and it read 103.0! Fun Times Right? Guess what the discharge papers read for post MRI side effects? "If your child aquires a fever over 100.0 within 24-48hours of the scan you must return to the hospital for further evaluation.!" And yep, you guessed it....we headed back to the children's ER at Richland. As soon as we got there Parker had rash all over his body, a fever of 103.0 and a horrible cough. Upon being seen at 8:30 that night we were told that their were some case studies that showed if Propofol was not properly stored (sat out for too long) then it would grow a bacteria, leaving the child with a bacterial infection of the bloodstream. SCARY stuff right. So they administerd another I.V. in his foot and treated Parker for Sepsis (a bacterial infection) as a precautionary measure until they got the CBC and culture back. And he SCREAMED so bad with this I.V! It was really hard on us to watch. They took a chest x-ray at 2 am to rule out pnemonia! Which scared him nearly to death! That came out negative. They came in to discharge us at 4:40am Tuesday morning but were told that he would have to be seen Tuesday night for another round of antibiotics and recheck. They told us the later the better because it takes some time for the results from the lab. We called Tuesday night and the results were still not back yet but were told that we would need to be seen Wednesday morning for his recheck and shots. So we did just that at 9:30 this morning. We waited yet again to be seen and totally missed our ENT appointment that took 2 months to get, because this morning they only had one doctor, and they couldn't seem to find someone in 4 hours to give an 8 month old child a shot of antibiotic. We were fit to be tied. Especially after being told the night before that it would take no more than one hour from start to finish. So we are back home this evening and Parker is still running a temp, still has a rotten cough and the culture is still not back yet! Imagine that! And while Karlyn and I were eating supper tonight we heard this huge noise in the garage, almost like something ran into the door....and the springs on the garage door popped and broke! Go figure right?! Why not?! :) So tomorrow we have PT, OT and Developemental Therapy and Friday we are back to Charlotte again. Please continue to pray for our family and we will post updates as we get them.
Love In Christ,
The Crafts
What a CRAZY week! Parker had his MRI on Monday. The original appointment was scheduled for 1:15 on Monday, but we asked that they move the appointment to an earlier time. Parker was going to be without solid food or liquids for 6 hours before the scan, and Willis and I were not looking forward to this at all. So after much prayer they called us back with an earlier time of 11:00am and we took it! We were so excited. We started our day as usual at 5:30am and he had Oatmeal and Applesauce and a bottle with rice cereal to help tie him over and headed for the Children's Hospital at 10:00. Parker slept on the way to the hospital and didn't cry at all. Praise God! Once we arrived they took us to his room and we waited for the sedation team to come and get us. Let me just say that we are so very proud of Parker. Three nurses came in and we had dreaded this moment (the placement of the I.V.) and Parker didn't even cry! Yep, you read that right, he DIDN'T CRY!!! We were all shocked! He took it like a man! Unbelievable! The nurses were extremely shocked! They said that they have never had a patient not cry especially a baby of his age and that they wished that they would have taped it so they could show it off to all of their other patients! Crazy huh? While we were waiting the doctor came in and let us know that the MRI machine broke and it would be more of a wait until they could start. So in the meantime we continued to keep Parker preoccupied while we again waited to go downstairs to be sedated and by this time it was 1:20 pm and Parker still had not fussed at us for a meal! We were able to walk over to the MRI door and hold him while they sedated him and boy was that hard. The doctor looked at me and said "Make sure you hold him tight and support his head, he will scream for about 10 seconds and then go limp". And that he did....And it was not easy. It was a scream we will never forget! It's never easy to hear your baby cry let alone scream in pain. We asked the nurse while we were waiting to get Parker back from downstairs "What on earth made him scream with the anesthetic Propofol" and she said that one of the doctors had Propofol a month back and his exact words were "Propofol will bring a grown man to tears"! I am glad that we didn't find that out until after it was administered. They told us that the MRI would only take 1 hour and after 2 hours of Parker not being back we asked if they were having any problems and she then let us know that the MRI broke yet again with Parker in it so they had to take him to a different room to finish. Parker came back to the room with us at 3:20 and he was monitored for an hour and said that we were good to go! Sunday night when we gave Parker his bath we had removed his DOC Band and his forehead and right temple were so irritated and red. The instructions for that said that if in fact the redness did not go away after an hour that we were to be seen immediately in Charlotte for an adjustment. SO, at 4:00 Monday after the MRI we headed to Charlotte. We were seen for about 30 minutes and turned right back around and headed home. Arriving home at 7:00 Willis took Parker out of his seat and said " Amy he's really hot"! We checked his temp and it read 103.0! Fun Times Right? Guess what the discharge papers read for post MRI side effects? "If your child aquires a fever over 100.0 within 24-48hours of the scan you must return to the hospital for further evaluation.!" And yep, you guessed it....we headed back to the children's ER at Richland. As soon as we got there Parker had rash all over his body, a fever of 103.0 and a horrible cough. Upon being seen at 8:30 that night we were told that their were some case studies that showed if Propofol was not properly stored (sat out for too long) then it would grow a bacteria, leaving the child with a bacterial infection of the bloodstream. SCARY stuff right. So they administerd another I.V. in his foot and treated Parker for Sepsis (a bacterial infection) as a precautionary measure until they got the CBC and culture back. And he SCREAMED so bad with this I.V! It was really hard on us to watch. They took a chest x-ray at 2 am to rule out pnemonia! Which scared him nearly to death! That came out negative. They came in to discharge us at 4:40am Tuesday morning but were told that he would have to be seen Tuesday night for another round of antibiotics and recheck. They told us the later the better because it takes some time for the results from the lab. We called Tuesday night and the results were still not back yet but were told that we would need to be seen Wednesday morning for his recheck and shots. So we did just that at 9:30 this morning. We waited yet again to be seen and totally missed our ENT appointment that took 2 months to get, because this morning they only had one doctor, and they couldn't seem to find someone in 4 hours to give an 8 month old child a shot of antibiotic. We were fit to be tied. Especially after being told the night before that it would take no more than one hour from start to finish. So we are back home this evening and Parker is still running a temp, still has a rotten cough and the culture is still not back yet! Imagine that! And while Karlyn and I were eating supper tonight we heard this huge noise in the garage, almost like something ran into the door....and the springs on the garage door popped and broke! Go figure right?! Why not?! :) So tomorrow we have PT, OT and Developemental Therapy and Friday we are back to Charlotte again. Please continue to pray for our family and we will post updates as we get them.
Love In Christ,
The Crafts
Sunday, May 2, 2010
Hey Everybody...
We have been so crazy busy this last week with appointments that I have only been posting pictures and not information. So without further delay...We went to Charlotte for our new DOC Band on Thursday. As you can see from the pictures that we posted Parker acts like it's not even there. We had read about the first 48 hours and how the children don't normally adjust until the 3rd day or so and Parker acts like he's had it all along. I could not wait to decorate his band and I think that it turned out really cute! Tonight though, we are having to leave it off because he has some redness that is lasting more than an hour and it's not supposed to. So...I have a phonecall in to Cranial Technolgies to get there opinion. The only other downside to the redness is the smell. It smells like wet doritos! No Joke! Parker sweats so bad that he needs his head washed daily, and making sure that the band is properly cleaned as well. Parker had his 3 month follow-up with his cardiologist and we actually made it through this appointment without an ultrasound!!! This means that everything sounds GREAT! And that makes us very thankful parents! Parker's cardiologist and nurses could not believe how much Parker has grown! They all said that he looks like a brand new baby. Again...we will have a follow-up in 3 months with them and then hopefully see them twice a year! We're elated! Tomorrow we have Parker's MRI. It's never easy as a parent to give your baby over to complete strangers for any amount of time, but it's necessary! Please be in prayer for us tomorrow morning because Parker can not have anything to eat after 6 AM ! So I will let you figure out the rest! It's not going to be fun. Parker is only allowed clear fluids until 9AM and then after that nothing! We have to be at the Children's Hospital at 11:00am and then they will take him back at 12:45! So tomorrow will be a challenge!
They will be I.V. sedating Parker... so that will not be fun either! We have an appointment on the 13th of this month for the results unless something comes available sooner. The neurologist did tell us that if he saw something that needed immediate attention then he would call us himself! So...we don't want a phonecall from him! We also have the ENT appointment on Wednesday for Parker's blueness and then we also start PT and OT as well as Developmental Therapy on Thursday and back on the road to Charlotte again on Friday for our first adjustment! AND...I am working in between all of Parker's appointments. Fun Times Right? Please continue to pray for our family. We really need some "WHITE" on our calendars!!! We will let you all know when we find out more details!
Love In Christ,
The Crafts
We have been so crazy busy this last week with appointments that I have only been posting pictures and not information. So without further delay...We went to Charlotte for our new DOC Band on Thursday. As you can see from the pictures that we posted Parker acts like it's not even there. We had read about the first 48 hours and how the children don't normally adjust until the 3rd day or so and Parker acts like he's had it all along. I could not wait to decorate his band and I think that it turned out really cute! Tonight though, we are having to leave it off because he has some redness that is lasting more than an hour and it's not supposed to. So...I have a phonecall in to Cranial Technolgies to get there opinion. The only other downside to the redness is the smell. It smells like wet doritos! No Joke! Parker sweats so bad that he needs his head washed daily, and making sure that the band is properly cleaned as well. Parker had his 3 month follow-up with his cardiologist and we actually made it through this appointment without an ultrasound!!! This means that everything sounds GREAT! And that makes us very thankful parents! Parker's cardiologist and nurses could not believe how much Parker has grown! They all said that he looks like a brand new baby. Again...we will have a follow-up in 3 months with them and then hopefully see them twice a year! We're elated! Tomorrow we have Parker's MRI. It's never easy as a parent to give your baby over to complete strangers for any amount of time, but it's necessary! Please be in prayer for us tomorrow morning because Parker can not have anything to eat after 6 AM ! So I will let you figure out the rest! It's not going to be fun. Parker is only allowed clear fluids until 9AM and then after that nothing! We have to be at the Children's Hospital at 11:00am and then they will take him back at 12:45! So tomorrow will be a challenge!
They will be I.V. sedating Parker... so that will not be fun either! We have an appointment on the 13th of this month for the results unless something comes available sooner. The neurologist did tell us that if he saw something that needed immediate attention then he would call us himself! So...we don't want a phonecall from him! We also have the ENT appointment on Wednesday for Parker's blueness and then we also start PT and OT as well as Developmental Therapy on Thursday and back on the road to Charlotte again on Friday for our first adjustment! AND...I am working in between all of Parker's appointments. Fun Times Right? Please continue to pray for our family. We really need some "WHITE" on our calendars!!! We will let you all know when we find out more details!
Love In Christ,
The Crafts
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