Well, Ashley has been doing pretty good since her surgery 6 weeks ago. Now that things are healing, we're getting a better idea of how things are. She had a post-op MRI on Monday, and you can definitely see the different, although even the doctor commented at her 3 weeks post-op that part of her foramen magnum had already grown back.
Occasionally she holds her neck even if she doesn't say boo-boo our "ouchie" she'll just walk around holding the back of her head, so we're hoping it is just soreness still and nothing more than that.
Sometimes she grabs her left knee and says boo boo, but that could be just because she's walking more now. She is so much more mobile now:o) She is starting to run a bit and she is the cutest when she dances. She does this adorable mix of twirl, booty bounce and ballet. She sees it all from her sisters (although I don't encourage the booty bounce) but she looks really cute doing it:o) I'll have to snag some video and post it.
Oh, and last night we were playing that song "I can only Imagine" and she stood there doing these little dips and movements with her hands and arms. Her big sister Autumn loves to do this song in sign language and even though she can't do all the signs, she tries to follow her sister and when the song came on, she just went right to it.
She's gotten so much older lately, she's pronouncing her sounds better, singing out of nowhere sometimes, adamant on brushing her teeth before her noon time nap now, and just being a "big girl" She can understand things so well, her comprehension skills are so good and we love when we tell her something and she says "otee" (O.K.)
I always have loved being a LP mom, but it seems I keep finding myself more and more just watching her in awe and loving every cute little thing she does:o)
Tuesday, December 8, 2009
Friday, October 30, 2009
Benefit for "Give Reilly a Lift" Cause
We are running a Special Benefit This weekend at http://lilashleyscloset.etsy.com
50% off proceeds from ALL HAIR FLOWERS will be donated to Reilly's family to help raise money for a much needed van for Reilly.
More Info http://reillyslift.blogspot.com/
http://lilashleyscloset.blogspot.com/
Please join us in this cause at Facebook Causes "Give Reilly a Lift" to help this wonderful family.
Sunday, October 25, 2009
She's Back:o)
Well, Ashley is just about back to normal. She has learned to slow down and it has helped a lot, but definitely something she had to learn herself. We kept telling her a few days after surgery to slow down when she walked, but she would get excited and try to start running like any normal 2 yr old, only to fall, and say "owies" There have been a LOT of kissing boo-boos these last couple weeks.
When she was in the hospital, it must have taken them a few tries to get a good vein because she has a mark on every foot and hand. If we ask her if she has a boo-boo, she holds both hands up & sometimes her feet to be kissed. Her demands are getting less & less though now that she's on the mend.
One thing that has changed a lot since her surgery is her kyphosis, it seems to have virtually disappeared. We're not sure if it's because she has been walking for a few months now or if the extra room in her spine in helping, we'll see what the surgeon says on her follow up. Speaking of, that's actually next week, should be sooner, but her Dr. is really booked up. We expect that she will have a good report. Here are some pictures of Ashley's day. She was in such a good mood in the morning. Since she could have clear liquids, jello worked, so we had home made jello for breakfast, so it wouldn't be so hard on her during the rest of the day to fast.
She fell asleep in the car ride to the hospital as but as soon as she realized where she was that happy mood vanished as she snuggled her Daddy.
We were with her as soon as she started waking up, this is our first glimpse of her in recovery.
So here she is later that evening, I'll need to fix my date/time on my camera because this is one of the cheezy smiles she threw us just a few hours later.
When she was in the hospital, it must have taken them a few tries to get a good vein because she has a mark on every foot and hand. If we ask her if she has a boo-boo, she holds both hands up & sometimes her feet to be kissed. Her demands are getting less & less though now that she's on the mend.
One thing that has changed a lot since her surgery is her kyphosis, it seems to have virtually disappeared. We're not sure if it's because she has been walking for a few months now or if the extra room in her spine in helping, we'll see what the surgeon says on her follow up. Speaking of, that's actually next week, should be sooner, but her Dr. is really booked up. We expect that she will have a good report. Here are some pictures of Ashley's day. She was in such a good mood in the morning. Since she could have clear liquids, jello worked, so we had home made jello for breakfast, so it wouldn't be so hard on her during the rest of the day to fast.
She fell asleep in the car ride to the hospital as but as soon as she realized where she was that happy mood vanished as she snuggled her Daddy.
We were with her as soon as she started waking up, this is our first glimpse of her in recovery.
So here she is later that evening, I'll need to fix my date/time on my camera because this is one of the cheezy smiles she threw us just a few hours later.
Tuesday, October 13, 2009
Ashley's decompression surgery went great!
Over all we have to say what a relief and miracle this whole situation was, God is Good!!! The surgery got started almost 2 hours late. They waited to take her blood and cross check it until after she was relaxed in the anesthesia to make it easier on everyone. She did very good, but knew something was up when she opened her eyes when we got there.
We had woke her up earlier than usual in hopes she would sleep through the fasting and not be so hungry which worked well, but when she saw the blue uniforms, her eyes got real big and she wouldn't take her eyes off every nurse that walked in the pre-op room. She had a little oral medication to relax her so when we had to hand her off, there wasn't a lot of fear like she has had before.
They came and updated us 3 times through out her surgery letting us know each step pf the way where it had progressed, then the Dr. came out. Mike asked her if she found what she was expecting to and she said " yes, everything and more, she was a mess"
Instead of a "pinching" that were were previously under the impression of the Dr said that the bone of her foramen magnum was actually "digging" into her spinal cord. She had to remove a section of bone nearly 3" around. We though that was a lot, but she said if she didn't becuase Ashley is still in growing stages, that it would have grown back over the area.
She also had to remove her C1 vertebre (the top bone in the spine under the foramen magnum). She said there was also a part of her skull that had formed a point where the bones meet at the base of her skull that had actually pierced the Dura (the "skin" around the brain between the skull and brain) Thsi was causing pressure on her brain and said there was a lot of bulging in her Sinus (basically the blood supply of the brain) When she shaved that point off the bone it relaxed immediately and she sewed up the hole that the piece of bone had pierced through.
So overall, it was worse than we had expected, but truly a miracle that she had even got to the point she was without any obvious symptoms. Dr Gilmer -Hill did a wonderful job and said that she is much safer now. Although there will always be the risk of damage as anyone with achondroplasia, she is not placing her on any "no can do" lists. She said, ballet, dance, even gymnastics would be ok, but no contact football, which I doubt she'll be doing anyway being that she is quite the little lady:o)
We were right there when she started to wake up and she signed Daddy and said Mama even though she was confused. She moved her arms and legs upon request, started signing more and ate some crackers and juice while enjoying little einstiens. It was amazing how alert she became after just a few hours. She even thew us some big cheesy smiles. I'll have to wait until tomorrow to upload them as Mike has the camera to catch more of her tonight.
Another early day tomorrow thank you so much to everyone for checking in on us all and sending your prayers and thoughts. We will continue to give updates on her progress.
We had woke her up earlier than usual in hopes she would sleep through the fasting and not be so hungry which worked well, but when she saw the blue uniforms, her eyes got real big and she wouldn't take her eyes off every nurse that walked in the pre-op room. She had a little oral medication to relax her so when we had to hand her off, there wasn't a lot of fear like she has had before.
They came and updated us 3 times through out her surgery letting us know each step pf the way where it had progressed, then the Dr. came out. Mike asked her if she found what she was expecting to and she said " yes, everything and more, she was a mess"
Instead of a "pinching" that were were previously under the impression of the Dr said that the bone of her foramen magnum was actually "digging" into her spinal cord. She had to remove a section of bone nearly 3" around. We though that was a lot, but she said if she didn't becuase Ashley is still in growing stages, that it would have grown back over the area.
She also had to remove her C1 vertebre (the top bone in the spine under the foramen magnum). She said there was also a part of her skull that had formed a point where the bones meet at the base of her skull that had actually pierced the Dura (the "skin" around the brain between the skull and brain) Thsi was causing pressure on her brain and said there was a lot of bulging in her Sinus (basically the blood supply of the brain) When she shaved that point off the bone it relaxed immediately and she sewed up the hole that the piece of bone had pierced through.
So overall, it was worse than we had expected, but truly a miracle that she had even got to the point she was without any obvious symptoms. Dr Gilmer -Hill did a wonderful job and said that she is much safer now. Although there will always be the risk of damage as anyone with achondroplasia, she is not placing her on any "no can do" lists. She said, ballet, dance, even gymnastics would be ok, but no contact football, which I doubt she'll be doing anyway being that she is quite the little lady:o)
We were right there when she started to wake up and she signed Daddy and said Mama even though she was confused. She moved her arms and legs upon request, started signing more and ate some crackers and juice while enjoying little einstiens. It was amazing how alert she became after just a few hours. She even thew us some big cheesy smiles. I'll have to wait until tomorrow to upload them as Mike has the camera to catch more of her tonight.
Another early day tomorrow thank you so much to everyone for checking in on us all and sending your prayers and thoughts. We will continue to give updates on her progress.
Monday, October 12, 2009
Today's surgery..Thank you all for your prayers
Well, we're off to the hospital soon. Ashley's surgery is scheduled for 2pm today. She had a breakfast of home made apple juice jello. We tried to get her to drink some chicken broth for more nutrients but she wasn't having any of that! We should have opted for the pedialite. Thank you to everyone who has send kind words and prayers our way. We are praying for the best. Mike and I have it seems emotionally had to shut down a bit and cannot think about the what if's. We are trusting in The Lord that He watches over our little Ashley and being thankful for the peace of mind. We are so thankful that Ashley is too young to understand what is going on right now, and we are taking the burden and thoughts from her. I couldn't imagine being a grown adult and knowing this had to be done, thank God for youthful innocence!
Tuesday, October 6, 2009
Surgery update
ok, well, this has been an eventful last few days. I had called pretty much every ped neuro in my state as well as every specialist in head, neck & neuro on the LPA website to no avail. Nobody wants to give an opinion without seeing her in person and the soonest appointment I could get with anyone was the 29th which is too late. It's really hard to get past the receptionists and referral offices to get to a nurse even, let alone the actual Dr.....very frustrating!
I was tickled pink when I got a call back from Dr. Carson's office yesterday and they referred me to Dr. Jallo who actually does the decompression surgeries. She said they could not help me there but he may be able to. The secretary at Dr. Jallo's office out of John Hopkins said if I forwarded the pics to her she would forward them to him which I did yesterday morning, but have not heard back from yet. But even better news since then.
Thank you so much to the ladies who have taken time to give prayers, advice and help with research. Alex, once again I cannot express my gratitude to you for helping me get in touch with Peggy and Dr.Pauli. I just got off the phone with Peggy again and she and Dr. Pauli looked over Ashley's MRI photos and said they completely concur with my ped neurosurgeon said. Dr. Pauli's response to hearing Ashley's upcoming surgery is on Monday was "good" because they feel the same amount of urgency that our Dr. has. So as much as we don't want to put her through this, it is definitive that it needs to be done as soon as possible.
I asked about another MRI and Peggy said "absolutely not" so no such luck on waiting to see if results show the syrinx is stable or not. It is covering such a large part of her spinal cord that it is imperative it is done now.
The one thing that confuses me is when I had first looked at the MRI's I thought the white spot near her foramen magnum was the syrinx, but our Dr. said it was "high points" distressed" points. Peggy said that white spot is actually her syrinx, so I'm confused about that. I'm going to look again at the photos and see if I may have mis-understood, but either way, surgery is a-go for Monday the 12th, only 6 days.
Poor Ashley has no Idea what is coming:o( She is so happy and lighthearted I just hate to have her go through this, but the risks are far greater if she doesn't. The scary thing is, these tests were done over 4 months ago and they are telling us do it immediately, we're so thankful something hasn't happened already and I'm quite a bit ticked off at the hospital for not sending the results to my Dr. to begin with.
We should have never had to chase down results that were this serious!!! Somebody really dropped the ball on that one, but on the other side, God has his timing for everything and obviously it was meant to be found now. We can at least be thankful we had the MRI done when we did.
From now on, I will not let regular or even specialist Drs tell me NOT to get a test done on Ashley that I feel is needed. This should have been done 2 years ago and my ped-ortho, neurologist and pediatrician all advised us not to because the sedation could be more damaging that what they would find. That will NOT be happening again!
We know that no matter what Ashley is in God's hands and we trust that He will watch over the surgeon's mind and hands and fix our little Ashley. In the mean time, we need to get our heads together to figure out what preparations need to be made.
****** New update*** Our neurosurgeon just called, it's 8pm, that's impressive, and she explained things again and I mentioned our concern about the fact that the MRIs were taken 4 months ago and that it could be worse, and her exact words were" it could not have gotten any worse in this time or she would already be paralized" so that confirms the urgency , but also gives us peace of mind that it has not gotten worse. But yowza, to think her spinal cord is this close to something so detrimental reminds us again, the miracles God truly can work because she is still here and walking around like there is nothing wrong.
I was tickled pink when I got a call back from Dr. Carson's office yesterday and they referred me to Dr. Jallo who actually does the decompression surgeries. She said they could not help me there but he may be able to. The secretary at Dr. Jallo's office out of John Hopkins said if I forwarded the pics to her she would forward them to him which I did yesterday morning, but have not heard back from yet. But even better news since then.
Thank you so much to the ladies who have taken time to give prayers, advice and help with research. Alex, once again I cannot express my gratitude to you for helping me get in touch with Peggy and Dr.Pauli. I just got off the phone with Peggy again and she and Dr. Pauli looked over Ashley's MRI photos and said they completely concur with my ped neurosurgeon said. Dr. Pauli's response to hearing Ashley's upcoming surgery is on Monday was "good" because they feel the same amount of urgency that our Dr. has. So as much as we don't want to put her through this, it is definitive that it needs to be done as soon as possible.
I asked about another MRI and Peggy said "absolutely not" so no such luck on waiting to see if results show the syrinx is stable or not. It is covering such a large part of her spinal cord that it is imperative it is done now.
The one thing that confuses me is when I had first looked at the MRI's I thought the white spot near her foramen magnum was the syrinx, but our Dr. said it was "high points" distressed" points. Peggy said that white spot is actually her syrinx, so I'm confused about that. I'm going to look again at the photos and see if I may have mis-understood, but either way, surgery is a-go for Monday the 12th, only 6 days.
Poor Ashley has no Idea what is coming:o( She is so happy and lighthearted I just hate to have her go through this, but the risks are far greater if she doesn't. The scary thing is, these tests were done over 4 months ago and they are telling us do it immediately, we're so thankful something hasn't happened already and I'm quite a bit ticked off at the hospital for not sending the results to my Dr. to begin with.
We should have never had to chase down results that were this serious!!! Somebody really dropped the ball on that one, but on the other side, God has his timing for everything and obviously it was meant to be found now. We can at least be thankful we had the MRI done when we did.
From now on, I will not let regular or even specialist Drs tell me NOT to get a test done on Ashley that I feel is needed. This should have been done 2 years ago and my ped-ortho, neurologist and pediatrician all advised us not to because the sedation could be more damaging that what they would find. That will NOT be happening again!
We know that no matter what Ashley is in God's hands and we trust that He will watch over the surgeon's mind and hands and fix our little Ashley. In the mean time, we need to get our heads together to figure out what preparations need to be made.
****** New update*** Our neurosurgeon just called, it's 8pm, that's impressive, and she explained things again and I mentioned our concern about the fact that the MRIs were taken 4 months ago and that it could be worse, and her exact words were" it could not have gotten any worse in this time or she would already be paralized" so that confirms the urgency , but also gives us peace of mind that it has not gotten worse. But yowza, to think her spinal cord is this close to something so detrimental reminds us again, the miracles God truly can work because she is still here and walking around like there is nothing wrong.
Friday, October 2, 2009
These are Ashley's actual MRI photos, they show the areas of concern except for the syrinx, that is kind of hard to spot in comparison to the stenosis and "high point" a.k.a "distress" within the spinal cord. The syrinx is actually a thin skinny line that runs down her spinal cord beginning between C2 & C3.
The area that is having the pressure is right up there under the foramen magnum by C1 vertebre.
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