So after the surgery, Alexis lost at the minimum 10 pounds! We just went to Shriner's the other day and she has gained back a total of 4 pounds. Woooo hoooo!
I think she is about to have a growth spurt as she is finally starting to get her appetite back. Only took almost 5 months.
She is about 4'1" tall. They say that if her spinal cord were straight she would be about 3 inches taller.
Friday, August 12, 2011
Health update~
SUMMER 2011
It's been a very good summer...and a very well deserving summer. Alexis has had such a difficult year and I was determined to make her summer a Fabulous one!
We have a new outlook on life and are enjoying it to the fullest!
We have done so much this summer. And it has been a blast. Alexis is looking forward to going back to school.
I am as well. It will be nice to get back to something a little more normal. Hopefully, this year will go well.
We had our visit with Shriner's the other day. It went alright, I think the only part of her back that has improved was the lower curve.
But I'm not sure.
The XRAYS look the same to me.
Alexis' best friend moved back to Korea. :(
It was very difficult to go through as both of our family's became close! The girls got along great! It was a great summer. They spent so much time together playing every day!
Alexis will have the memories of having a best friend for a life time. I told her that I had some best friends when I was her age, and we are still friends to this day!
They will remain friends forever.
We put together a "Going away party for her" Or should I say a "going away week". It was well worth it and so much fun.
Friday, June 24, 2011
Best Friends~~
Best friends ~ ~ ~
Alexis and Sunjeong get along very well. They play nicely and the are fun to be around. We will miss Sunjeong when she leaves back to Korea. :(
She is so pleasant to have over which is great cause she is here all the time. But I just love seeing the girls having fun.
Alexis and Sunjeong get along very well. They play nicely and the are fun to be around. We will miss Sunjeong when she leaves back to Korea. :(
She is so pleasant to have over which is great cause she is here all the time. But I just love seeing the girls having fun.
There is one other girl that they play with. And even the 3 of them get along great. Who says that 3 can't get along?!?!?! These girls can.
Sunday, June 12, 2011
Monday, May 16, 2011
Scarletina
Scarletina
Scarletina is a rash caused by infection somewhere in the body (usually the throat but often other places) with the Group A beta-hemolytic Streptococcus germ. (Scarlet fever is the full blown syndrome of untreated Strep infection with a much worse rash.) There are many strains of Streptococcus germ; this is the one that causes this rash. The immune system forms antibodies that cross react with not only parts of the Strep germ that act as a toxin but also normal tissues in the blood vessels of the body. When this happens in the skin, the blood vessels are injured, dilate, and a characteristic red, sandpapery rash develops. It is often first noted in the underpants area - where the skin stays the warmest.If you suspect this rash, even in a child with no complaint of sore throat, you should get medical attention for proper diagnosis and treatment with complete course of an antibiotic. Group A Strep infections carry a small but definite risk of further reaction with the heart (rheumatic fever), which can cause permanent damage to the heart valves, or with the kidneys, causing dangerously high blood pressure (acute glomerulonephritis), or with the brain, causing a bizarre movement disorder (chorea, pronounced like Korea). The scarletina rash is also something to watch out for in any child with chickenpox because it may indicate a secondary infection with this potentially bad-acting germ. Call your doctor right away if you see a scarletina rash with known or suspected chickenpox.
A week or two after the rash fades you may notice some peeling of the skin especially of the arms and chest, and perhaps even peeling of the fingers and toes if the rash was severe. This is normal and harmless.
Scarlet Fever....the worst Friday the 13th ever!
At least we had a good ER Dr. Friday night.
Friday, May 13, 2011
Scarlet Fever!
About Scarlet Fever
Scarlet fever is caused by an infection with group A streptococcus bacteria. The bacteria make a toxin (poison) that can cause the scarlet-colored rash from which this illness gets its name.Not all streptococci bacteria make this toxin and not all kids are sensitive to it. Two kids in the same family may both have strep infections, but one child (who is sensitive to the toxin) may develop the rash of scarlet fever while the other may not. Usually, if a child has this scarlet rash and other symptoms of strep throat, it can be treated with antibiotics. So if your child has these symptoms, it's important to call your doctor.
Symptoms of Scarlet Fever
The rash is the most striking sign of scarlet fever. It usually begins looking like a bad sunburn with tiny bumps and it may itch. The rash usually appears first on the neck and face, often leaving a clear unaffected area around the mouth. It spreads to the chest and back, then to the rest of the body. In body creases, especially around the underarms and elbows, the rash forms classic red streaks. Areas of rash usually turn white when you press on them. By the sixth day of the infection the rash usually fades, but the affected skin may begin to peel.Aside from the rash, there are usually other symptoms that help to confirm a diagnosis of scarlet fever, including a reddened sore throat, a fever above 101° Fahrenheit (38.3° Celsius), and swollen glands in the neck. The tonsils and back of the throat may be covered with a whitish coating, or appear red, swollen, and dotted with whitish or yellowish specks of pus. Early in the infection, the tongue may have a whitish or yellowish coating. A child with scarlet fever also may have chills, body aches, nausea, vomiting, and loss of appetite.
When scarlet fever occurs because of a throat infection, the fever typically stops within 3 to 5 days, and the sore throat passes soon afterward. The scarlet fever rash usually fades on the sixth day after sore throat symptoms began, but skin that was covered by rash may begin to peel. This peeling may last 10 days. With antibiotic treatment, the infection itself is usually cured with a 10-day course of antibiotics, but it may take a few weeks for tonsils and swollen glands to return to normal.
In rare cases, scarlet fever may develop from a streptococcal skin infection like impetigo. In these cases, the child may not get a sore throat.
Tuesday, May 3, 2011
Alexis Suzanne sharing her beautiful smile & legs ;)
Tonight we had snow and hail...yep, you heard me, it is May 2nd and it was doing this crazy weather.
So, Alexis had to make me a sweet little dish...she walked in the room carrying this dish with hail and snow chunks and had her little iphone playing xmas music. HAHAHA, she is so cute!
It was filled with candy!
She made it for Chris and I. Love her!
And the last photo is of Alexis' leg xrays...showing how the chiari affected her leg lengths! :(
Monday, May 2, 2011
Easter with Alexis April 2011
Easter 2011
Alexis got a DIVA Bunny, and lots of candy. She made a card for the Easter Bunny ( AKA E.B.). And the Easter bunny wrote back on the front of the card back to Alexis.
Alexis' request was to please hide eggs hard....we found all but one egg. It took about 3-4 days to find the other egg. Good job, E.B.
Alexis' request was to please hide eggs hard....we found all but one egg. It took about 3-4 days to find the other egg. Good job, E.B.
Alexis just loves her dog to pieces...a girls best friend! We couldn't have asked for a better dog. I love this dog to pieces, too.
And Misty has had a head injury as well. She was hurt somehow before we got her. We rescued her and we don't really know the whole story but someone hurt her. Alexis feels that they really have a connection with eachother and their owie's on their heads. :)
And Misty has had a head injury as well. She was hurt somehow before we got her. We rescued her and we don't really know the whole story but someone hurt her. Alexis feels that they really have a connection with eachother and their owie's on their heads. :)
1st day PT May 2 2011
I don't know if any of you know Alexis very well, but if you go up to Alexis and say, Hi, How are you? She will tell you, Good! And smile!
The nurses got this constantly when we were in Children's. And as soon as they would leave Alexis would say, Mommy, I am hurting so bad!
One of the teachers came up to me today and told me that it was nice to see Alexis' video cause it was hard to imagine all she went through. They told me that they love her smile and that is what they see all the time.
Thank you for that....I love to hear that my little girl is Smiling all the time. :)
Sunday, May 1, 2011
matching wrist band for her bunny :)
Friday, April 29, 2011
Living with Chiari Malformation~Several Symptoms Alexis is having & what to look for!
Chiari Malformation
Chiari I Malformation is defined by a volumetrically small posterior cranial fossa (the compartment in the back of the skull), which leads to overcrowding of the cerebellum and brainstem. This causes a blockage of the flow of cerebro-spinal fluid through the foramen magnum, making it difficult for the fluid to flow around the brain and in and out of the skull. In many cases, the cerebellar tonsils are pushed downward through the foramen magnum. However, this is not a necessary part of diagnosis.
Chiari is generally considered congenital, although certain things like trauma and spinal taps have been shown to cause an acquired form of Chiari. Chiari has come to be better known with the advent of the MRI, leading to more people being diagnosed.
The symptoms of Chiari are caused by raised intra-cranial pressure and compression of the cerebellum and brainstem. Again, it is important to note that symptoms are not caused by herniation of the cerebellar tonsils, thus the length of herniation does not correlate with the severity of symptoms. Chiari symptoms may arise at any time in a person's life. Sometimes, symptoms are brought about by trauma (like surgery, injury, or childbirth), by growth spurts, or by illness. Other times, it is unknown what causes symptoms to set in. The following symptom list is from chiarione.org, and is the best compilation I've found. Please note that these symptoms are reported by patients, so they may be symptoms of related conditions in addition to strictly Chiari symptoms.
* Headache (esp. if daily or at lower back of head)
* Painful tension in neck
* Fatigue
* Migraines
* Dizziness
* Visual disturbances/loss of vision/spots in vision/double vision
* Tingling/numbness in the extremeties
* General imbalance/clumsiness
* Memory loss
* Intolerance to bright light/difficulty adjusting to light change
* Vertigo from position change or sudden standing
* Difficulty walking on uneven ground/feeling ground under feet
* Poor motor skills
* Pressure/pain in the neck
* Pressure/pain behind the eyes (soreness in the eyeballs)
* Back pain
* Neck spasms
* Insomnia
* Ringing in ears (like the tone heard in a hearing test)
* Tingling/crawling feeling on scalp
* Intolerance to loud/confusing sounds
* Decreased sensation to touch in extremeties
* Decreased sensitivity to temperature
* Pain & tension along ear/eye/jawline
* Difficulty swallowing/lump in throat/sore throat/swollen lymph nodes
* Spontaneous vertigo
* Hand tremors
* Poor blood circulation/cold hands & feet
* Sinus/mucous problems
* Sleep apnea
* Pressure in ears
* Nausea
* Difficulty reading/focusing on text
* Depth perception problems
* Burning sensation in extremeties/shoulder blades
* Fluid-like sound in ears (like water running)
* Loss of sexual interest/lack of sensation in pelvic area
* Pulling sensation while sitting/standing
* Intense itchiness w/profuse sweating
* Gag reflex problems/lack of gag reflex
* Pressure/tightness in chest
* Loss of bladder control
* Frequent urination
* Dehydration/excessive thirst
* Dizziness
* Loss of smell/confusion with sense of smell
* Dry skin and lips
* Sudden/abrupt changes in blood pressure
* Hiccups (in higher frequency/severity)
* Low body temperature/sudden changes in body temperature
* Strangling feeling
* Floating sensation
As you may be able to tell, the variety of symptoms is astounding. This is one of the major causes of misdiagnosis and underdiagnosis. Also, many doctors are not well-educated about Chiari, especially about the most recent definitions and standards for diagnosis. Many neurologists are unaware of the condition or its severity. Many radiologists will note Chiari as an "incidental" finding if they are not well-informed. Also, even many neurosurgeons may not believe Chiari is the cause of the patient's symptoms. In particular, they may be using the former standard that the cerebellar tonsils must be at least 5mm below the foramen magnum. Doctors now know that the length of the herniation does not correlate with symptom severity. In order to get diagnosed and treated properly, it is best to go to a neurosurgeon with a great deal of experience with Chiari.
The treatment for Chiari is called a decompression surgery. This consists of a craniectomy, a laminectomy, and/or a duraplasty. A craniectomy is where they remove part of the base of the skull to enlarge the foramen magnum, which is the passageway between the skull and spine, to make more room for the flow of cerebro-spinal fluid. A laminectomy may also be done, where they remove the arch of one or more vertebra, also to open up the posterior fossa space and decrease crowding in the hindbrain area. Additionally, sometimes a duraplasty is done, in which the dura (the lining of the spinal cord) is opened and replaced with a patch, allowing for extra space for the flow of fluids.
Sunday, April 24, 2011
Alexis in her new brace! Right before Easter
I hate having to being the one to say, Yes, you have to wear this thing!
Still praying for a cure.
Tuesday, April 19, 2011
Aunt Phyllis and Uncle Harold...and one of our favorite Nurses, Eric
We were so lucky to have them visit while we were in Spokane.
Love you Aunt Phyllis and Uncle Harold!!!!!!
ART Sleep More ART!!! WoooHoooo!
She made a few projects while she was in the hospital! They have an awesome program there.
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