Monday, October 31, 2011
Saturday, October 29, 2011
Coming off the meds....
Hey Everybody...
I wanted to give a quick update on where we were on Parker. We have been waiting to update anything about the doctors visits because all of the results were not in. I spoke with our neurologist about all of the MR's that we just did and they found that Parker is completely missing his left transverse sinus. Which means that the right side is making up for what the left side lacks! But still does not mean anything towards a diagnosis for our unanswered questions. The transverse sinus is the plumbing for your brain, so the right side is larger, since there is no left, but is still not pressing on anything important that would cause all the chaos! They did see some scarring on the fluid filled spaces in his right ventricle...but yet again...is not pressing on anything of importance. So, we have decided to come off the medicine for now and see what happens. A little scary I know, but if we don't have a diagnosis then we don't need to be medicating the unknown. We are hoping and praying everyday that we have made the best decision for Parker. Our pediatrician is completely on board with this decision, but is not finished digging deeper for Parker. He is requesting all of Parkers' medical records from the hospital to be sent to MUSC for further review, and second opinion from one of the leading pediatric neurologist. The last time we saw him was only about the fluid and he has no clue what we have been through with these "episodes"! So this will give us a fresh set of eyes and another opinion...but maybe this time we might find an answer. Anyway, in the meantime, I have been extremely busy at work, as well as home with my photography side jobs. Please take a look at my blog if you get a moment and check out some of the pics at acraftphotography.blogspot.com! Parker decided that he needed to try on his sissy's nerd glasses for Halloween, and we have enjoyed his little personality...he is so stinkin' cute! Please be much in prayer for Parker as he comes off this medicine that no scary episodes will occur, and please remember our friends at carolinacarters.blogspot.com as their sweet baby girl is awaiting some test results. We will be praying for sweet baby Jenny Kate to feel better real soon. We thank God for all of our precious blessings, big and small tonight...and thank you for remembering us in your prayers.
Love In Christ,
The Crafts
I wanted to give a quick update on where we were on Parker. We have been waiting to update anything about the doctors visits because all of the results were not in. I spoke with our neurologist about all of the MR's that we just did and they found that Parker is completely missing his left transverse sinus. Which means that the right side is making up for what the left side lacks! But still does not mean anything towards a diagnosis for our unanswered questions. The transverse sinus is the plumbing for your brain, so the right side is larger, since there is no left, but is still not pressing on anything important that would cause all the chaos! They did see some scarring on the fluid filled spaces in his right ventricle...but yet again...is not pressing on anything of importance. So, we have decided to come off the medicine for now and see what happens. A little scary I know, but if we don't have a diagnosis then we don't need to be medicating the unknown. We are hoping and praying everyday that we have made the best decision for Parker. Our pediatrician is completely on board with this decision, but is not finished digging deeper for Parker. He is requesting all of Parkers' medical records from the hospital to be sent to MUSC for further review, and second opinion from one of the leading pediatric neurologist. The last time we saw him was only about the fluid and he has no clue what we have been through with these "episodes"! So this will give us a fresh set of eyes and another opinion...but maybe this time we might find an answer. Anyway, in the meantime, I have been extremely busy at work, as well as home with my photography side jobs. Please take a look at my blog if you get a moment and check out some of the pics at acraftphotography.blogspot.com! Parker decided that he needed to try on his sissy's nerd glasses for Halloween, and we have enjoyed his little personality...he is so stinkin' cute! Please be much in prayer for Parker as he comes off this medicine that no scary episodes will occur, and please remember our friends at carolinacarters.blogspot.com as their sweet baby girl is awaiting some test results. We will be praying for sweet baby Jenny Kate to feel better real soon. We thank God for all of our precious blessings, big and small tonight...and thank you for remembering us in your prayers.
Love In Christ,
The Crafts
Sunday, September 25, 2011
Rain Rain Go Away....Come Again Another Day!!!
Hey Everybody...
Oh my Goodness....God could not have picked a worse day to bring the rain! I know that God never had children but if he would have had any clue how hard it was to get a baby out of a car with 30 lbs of bags stuck to my back maybe he could have picked a different day! The funny thing is...every time we have to be at the hospital it is either raining or flooding! So next time I will have us all pray for beautiful weather!!! I wanted to let you know that Parker did great with his MR's! The doctor said that they did the entire work up of Parkers' brain and as long as we didn't hear anything from our neurologist right away...then to rest easy because they only call back with emergent information. It was pouring down rain when we got to the hospital! It just so happened that I had on rolled up jeans and flip flops so enduring the five inch puddles completely helped! Although once I hit the door of the children's hospital, my umbrella obviously had holes because I was soaked!!! Anyway...we have an appointment on Friday for our results so be looking for an update then. We did get our braces for our legs and feet Thursday and they are cute! He looks like the bionic baby when he walks...but we have been told that this is supposed to help tremendously, so we are hopeful! We will start wearing them after therapy on Tuesday so be thinking about Sir Parker...because he doesn't like wearing them at first!!! Thanks for all the prayers!
Love In Christ,
The Crafts
Oh my Goodness....God could not have picked a worse day to bring the rain! I know that God never had children but if he would have had any clue how hard it was to get a baby out of a car with 30 lbs of bags stuck to my back maybe he could have picked a different day! The funny thing is...every time we have to be at the hospital it is either raining or flooding! So next time I will have us all pray for beautiful weather!!! I wanted to let you know that Parker did great with his MR's! The doctor said that they did the entire work up of Parkers' brain and as long as we didn't hear anything from our neurologist right away...then to rest easy because they only call back with emergent information. It was pouring down rain when we got to the hospital! It just so happened that I had on rolled up jeans and flip flops so enduring the five inch puddles completely helped! Although once I hit the door of the children's hospital, my umbrella obviously had holes because I was soaked!!! Anyway...we have an appointment on Friday for our results so be looking for an update then. We did get our braces for our legs and feet Thursday and they are cute! He looks like the bionic baby when he walks...but we have been told that this is supposed to help tremendously, so we are hopeful! We will start wearing them after therapy on Tuesday so be thinking about Sir Parker...because he doesn't like wearing them at first!!! Thanks for all the prayers!
Love In Christ,
The Crafts
Friday, September 23, 2011
Keep us in your Prayers this morning!!!
Hey Everybody....
Just wanted to let you all know that we will be at the children's hospital this morning. Parker is scheduled to have his MRI, MRA and MRV, and of course that means being sedated yet again! This unfortunately has become an old hat for us. Everytime is much harder than his last, because he of course is older and more aware. He has his work up for IV sedation at 9:00am and then we will go down hopefully right on schedule...just please pray that we will because the last few times we have done this they have run terribly behind...and Parker has not had anything to eat since 9:00 last night. He also didn't take a bottle for me last night which always leaves knots in my stomach. Seventy-two hours before any episode Parker has had, he wouldn't take a bottle, so that made me a little nervous last night. We did go yesterday for his AFO's !!! These are the custom molds for his legs and feet. So we will be stylin and profilin' sportin' our new braces. Parker fell to pieces during the entire appointment and it broke my heart. He looked up at me and said "I wanna doe home mommy" "Doe Bye Bye mommy".....you know me I was lookin' for the closest door!!! Anyway...we are still undergoing 2 therapies a week and he is making continued progress in that so....just remember us this morning please in your quiet times or in the stressful drive to work when your stuck in traffic...send up a prayer for us.
Love In Christ...
The Craft
Just wanted to let you all know that we will be at the children's hospital this morning. Parker is scheduled to have his MRI, MRA and MRV, and of course that means being sedated yet again! This unfortunately has become an old hat for us. Everytime is much harder than his last, because he of course is older and more aware. He has his work up for IV sedation at 9:00am and then we will go down hopefully right on schedule...just please pray that we will because the last few times we have done this they have run terribly behind...and Parker has not had anything to eat since 9:00 last night. He also didn't take a bottle for me last night which always leaves knots in my stomach. Seventy-two hours before any episode Parker has had, he wouldn't take a bottle, so that made me a little nervous last night. We did go yesterday for his AFO's !!! These are the custom molds for his legs and feet. So we will be stylin and profilin' sportin' our new braces. Parker fell to pieces during the entire appointment and it broke my heart. He looked up at me and said "I wanna doe home mommy" "Doe Bye Bye mommy".....you know me I was lookin' for the closest door!!! Anyway...we are still undergoing 2 therapies a week and he is making continued progress in that so....just remember us this morning please in your quiet times or in the stressful drive to work when your stuck in traffic...send up a prayer for us.
Love In Christ...
The Craft
Saturday, August 27, 2011
Subscribe to:
Posts (Atom)
