Mylee is still under the weather today....Dave and I were up with her all night...I gave her an albuterol treatment around 1:30am and this seemed to help a little. I was afraid she was going to choke from her coughing as much as she was coughing....This morning she is worse...at first was very lethargic and would whine and cry when I walked away into another room...I gave her the max 3 dose back to back albuterol treatment this morning and she is still grunting and coughing...her tips of her fingers aren't blue though and neither are her lips...so her O2 stats should be somewhat in the safe zone....I called her Pediatrican's office and we have an appointment at 1:45pm...she is sleeping or at least quiet in her room right now, I will see how she does when she wakes up...we may end up heading back to the ER if she seems worse. No running of the nose, but she does have a slight fever, 100.5.
Please keep Mylee in your prayers as we need to kick this pneumonia before we wind up in the hospital. It has been 4 months since our last in-patient stay and I would like to make it a little longer of stretch before we see another hospital room!!
xoxox
Wednesday, April 30, 2008
Monday, April 28, 2008
Crazy weekend...
Mylee is starting to feel better this morning....she was up very early and wanting to play! However, she is still running a pretty high fever, 102.1 at 8:05am...You can tell she was up early by the fact she is already laying down for her 1st nap!
Yesterday was a bit of a blurrrrr for all of us! However, Saturday we had a lot of fun with Uncle Troy and Grammy LaDonna....we went to Paradise Bakery for lunch and walked around our new shopping center at Norterra. We played at home for the afternoon and Uncle Troy jumped into the pool, he is the first to splash in the pool this year! We all went out to dinner at Pinnacle Peak Patio in Scottsdale. Mylee was entertained by the country band playing on stage and sat with a group of kids to watch her first magic show! We all had a great time....I think this is why we were all a little surprised with her being so sick on Sunday morning.
The video attached is Mylee dancing to the country band on Saturday evening. We hope everyone has a Happy Monday!!
xoxox
Yesterday was a bit of a blurrrrr for all of us! However, Saturday we had a lot of fun with Uncle Troy and Grammy LaDonna....we went to Paradise Bakery for lunch and walked around our new shopping center at Norterra. We played at home for the afternoon and Uncle Troy jumped into the pool, he is the first to splash in the pool this year! We all went out to dinner at Pinnacle Peak Patio in Scottsdale. Mylee was entertained by the country band playing on stage and sat with a group of kids to watch her first magic show! We all had a great time....I think this is why we were all a little surprised with her being so sick on Sunday morning.
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The video attached is Mylee dancing to the country band on Saturday evening. We hope everyone has a Happy Monday!!
xoxox
Sunday, April 27, 2008
Another Aspiration Pneumonia
Our fears are correct, Mylee has aspiration pnuemonia. However, I think we were able to catch it early. It looks like only a small right lobe infiltration. Mylee has been put on Zithromax for 3 days and we will go ahead and give her albuterol treatments consistantly. I will be giving her Pulmonologist a call here shortly to make sure he doesn't want Mylee treated with anything else.
We will keep you posted on how she is feeling later this afternoon!
xoxoxo
We will keep you posted on how she is feeling later this afternoon!
xoxoxo
Running High Fever...
Mylee is very sick today...she was up all night coughing...it sounds like pneumonia to me. She is running a 103 fever right now, however we have given her Motrin and an Albuterol breathing treatment!
We are going to see how she does in the next couple of hours or so...otherwise, we will head up to ER to have her looked at.
I will keep you posted on how she is doing...please keep her in your prayers....
xoxox
We are going to see how she does in the next couple of hours or so...otherwise, we will head up to ER to have her looked at.
I will keep you posted on how she is doing...please keep her in your prayers....
xoxox
Thursday, April 24, 2008
Results from Spine MRI
Quick Update:
Mylee had her follow-up with Dr. R (Neurosurgeon) today, he says her spine looked great, no syrinx! Thank you GOD! Syringomelia is commonly known to be associated with Chiari Malformation and since Mylee had some issues with her CSF flow prior to her brain decompression, she will continuely be checked for this.
What is syringomyelia? (sear-IN-go-my-ELL-ya)
Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Since the spinal cord connects the brain to the nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. Other symptoms may include headaches and loss of the ability to feel extremes of hot or cold, especially in the hands and disruption in body temperature. SM may also adversely affect sweating, sexual function and bladder and bowel control.
However, we were also checking for Tethered Cord. It was noted in the results from the MRI that she has a small fatty tissue in her lower lumbar region of her spine. Dr. R mentioned something about a dimple or tail portion of her spine. He also said this wouldn't be something we needed to be concerned about at this time. Once Mylee is old enough to be potty trained and we start to see some incontinence issues or if she starts to complain about lower back pain for us to contact his office and an MRI of that specific region will be ordered. For now, we will continue to pray and hope that she will not be diagnosed with this. We will also follow up with Dr. R and our Neuro family for a yearly MRI to view Mylee's Chiari. Below is some information regarding Tethered Cord.
What is Tethered Cord Syndrome?
The spinal cord extends from the base of the brain through the boney spine to the lower back. Soon after conception, special cells come together to form a tube that will become your baby's spinal cord. If this tube does not completely close, the spinal cord can become tethered. The cord is said to be "tethered" when it is abnormally attached within the boney spine.
There are two ways the spinal cord can become tethered.
If your child was born with spina bifida (open spine) then the cord could become tethered because of the scar tissue that resulted from surgically closing the spine at birth. This scar tissue causes the cord to attach abnormally.
The spinal cord can also become tethered with spina bifida occulta. This can occur without visible outward signs although usually half the children have visible symptoms.
In both cases, the tube that forms the spine failed to completely close during pregnancy.This may not be a problem until the child develops symptoms. Normally the spinal cord is able to move freely when your child bends or stretches but when it is tethered, it is stretched, especially with those movements. This abnormal stretching puts tension on the cord that can cause permanent damage to the muscles and nerves that control the legs, feet, bowel and bladder. Early detection and treatment is important to prevent this from occurring.
Signs and symptoms:
Your child may have one or more of the following signs or symptoms:
Skin on the lower part of his/her back:
Fatty mass
Hairy patch or discoloration
Skin tags
Dimples
Bowel or bladder problems:
Changes in bowel control
Incomplete emptying of the bladder
Frequent urinary tract infections
Changes in bladder pressure as seen on special testing (called urodynamics)
Difficulty in toilet training younger children
Diaper may always be wet between diaper changes
Orthopedic problems:
Persistent back pain
Increasing curvature of the spine (scoliosis)
Loss of sensation in the legs or feet
Unequal changes in size of the legs or feet
Stumbling or walking changes
Weakness in legs or feet
Please continue to keep Mylee in your thoughts and prayers.....xoxox
Mylee had her follow-up with Dr. R (Neurosurgeon) today, he says her spine looked great, no syrinx! Thank you GOD! Syringomelia is commonly known to be associated with Chiari Malformation and since Mylee had some issues with her CSF flow prior to her brain decompression, she will continuely be checked for this.
What is syringomyelia? (sear-IN-go-my-ELL-ya)
Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Since the spinal cord connects the brain to the nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. Other symptoms may include headaches and loss of the ability to feel extremes of hot or cold, especially in the hands and disruption in body temperature. SM may also adversely affect sweating, sexual function and bladder and bowel control.
However, we were also checking for Tethered Cord. It was noted in the results from the MRI that she has a small fatty tissue in her lower lumbar region of her spine. Dr. R mentioned something about a dimple or tail portion of her spine. He also said this wouldn't be something we needed to be concerned about at this time. Once Mylee is old enough to be potty trained and we start to see some incontinence issues or if she starts to complain about lower back pain for us to contact his office and an MRI of that specific region will be ordered. For now, we will continue to pray and hope that she will not be diagnosed with this. We will also follow up with Dr. R and our Neuro family for a yearly MRI to view Mylee's Chiari. Below is some information regarding Tethered Cord.
What is Tethered Cord Syndrome?
The spinal cord extends from the base of the brain through the boney spine to the lower back. Soon after conception, special cells come together to form a tube that will become your baby's spinal cord. If this tube does not completely close, the spinal cord can become tethered. The cord is said to be "tethered" when it is abnormally attached within the boney spine.
There are two ways the spinal cord can become tethered.
If your child was born with spina bifida (open spine) then the cord could become tethered because of the scar tissue that resulted from surgically closing the spine at birth. This scar tissue causes the cord to attach abnormally.
The spinal cord can also become tethered with spina bifida occulta. This can occur without visible outward signs although usually half the children have visible symptoms.
In both cases, the tube that forms the spine failed to completely close during pregnancy.This may not be a problem until the child develops symptoms. Normally the spinal cord is able to move freely when your child bends or stretches but when it is tethered, it is stretched, especially with those movements. This abnormal stretching puts tension on the cord that can cause permanent damage to the muscles and nerves that control the legs, feet, bowel and bladder. Early detection and treatment is important to prevent this from occurring.
Signs and symptoms:
Your child may have one or more of the following signs or symptoms:
Skin on the lower part of his/her back:
Fatty mass
Hairy patch or discoloration
Skin tags
Dimples
Bowel or bladder problems:
Changes in bowel control
Incomplete emptying of the bladder
Frequent urinary tract infections
Changes in bladder pressure as seen on special testing (called urodynamics)
Difficulty in toilet training younger children
Diaper may always be wet between diaper changes
Orthopedic problems:
Persistent back pain
Increasing curvature of the spine (scoliosis)
Loss of sensation in the legs or feet
Unequal changes in size of the legs or feet
Stumbling or walking changes
Weakness in legs or feet
Please continue to keep Mylee in your thoughts and prayers.....xoxox
Taking 2 more extra steps...
Mylee had a wonderful evening last night....she helped daddy fix dinner in the kitchen...it was really cute! She must of understood a conversation Dave and I was having regarding her walking...Dave positioned her to walk to him and sure enough she took 2 more steps...watch the video below!
I got an email from a friend of ours here locally in Phoenix. She has some friends that own a race car track here in the valley and she would like to have a fundraiser in honor of Mylee and Chiari Awareness...It is in the early stages, but I believe this will take place sometime the end of June. I will keep everyone updated on the status of the event. We are looking for donations in Mylee's name and hope we get some pretty big sponsors... This is going to be great not only to raise money for Chiari but really to get the awareness out into the community.
We have an appointment today with Mylee's neurosurgeon. We will get the results back from her full spine MRI, please pray she does not have Tethered Cord or any Syrinx (fluid cysts in her spine)....My daughter is so amazing and beautiful! I am so proud of her!!
xoxox
I got an email from a friend of ours here locally in Phoenix. She has some friends that own a race car track here in the valley and she would like to have a fundraiser in honor of Mylee and Chiari Awareness...It is in the early stages, but I believe this will take place sometime the end of June. I will keep everyone updated on the status of the event. We are looking for donations in Mylee's name and hope we get some pretty big sponsors... This is going to be great not only to raise money for Chiari but really to get the awareness out into the community.
We have an appointment today with Mylee's neurosurgeon. We will get the results back from her full spine MRI, please pray she does not have Tethered Cord or any Syrinx (fluid cysts in her spine)....My daughter is so amazing and beautiful! I am so proud of her!!
xoxox
Wednesday, April 23, 2008
Special Quilt of love....
Mylee has angels looking out for her...we have been blessed with a wide range of family, friends, and friends of friends and even strangers who have touched our lives in so many ways...words could never express our gratitude and appreciation we feel to you all!!
We would like to extend a special thanks to Jean Ilderton and our Angels at Quilt of love, especially Angel GrammyJ who help create Mylee's quilt of love and the special poem by Angel LadyGayle. We would also like to thank Angel Jane for the welcome banner.
Please view Mylee's quilt of love: http://www.quiltsoflove.com/quilt_2008/mylee_ge/mylee.html
Thanks so much!! xoxox
We would like to extend a special thanks to Jean Ilderton and our Angels at Quilt of love, especially Angel GrammyJ who help create Mylee's quilt of love and the special poem by Angel LadyGayle. We would also like to thank Angel Jane for the welcome banner.
Please view Mylee's quilt of love: http://www.quiltsoflove.com/quilt_2008/mylee_ge/mylee.html
Thanks so much!! xoxox
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