Wednesday, April 30, 2008
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!!
Monday, April 28, 2008
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.
|Make a scrapbook - it's easy!|
The video attached is Mylee dancing to the country band on Saturday evening. We hope everyone has a Happy Monday!!
Sunday, April 27, 2008
We will keep you posted on how she is feeling later this afternoon!
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....
Thursday, April 24, 2008
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:
Hairy patch or discoloration
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
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
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!!
Wednesday, April 23, 2008
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
I feel like a broken record, but Mylee is still very congested (gross, but she coughed a bunch of junk up this morning....and lovely too, she did this in the car on the way to therapy)... She was a showoff to her speech and physical therapists....They were very happy!! Mylee took a couple of steps for her physical therapist and said "Hi" (it sounds like "HA" - but we will take it) while she waved to her speech therapist!!
Our morning lasted longer than expected, but sometimes this will just happen...Mylee didn't get her 1st bolus until noon and she is finally laying down for her 1st nap of the day...she threw a little fit, but she is quiet now so I am hoping she is dreaming sweet dreams!!
We had a message on our answering maching from Children's Hospital Pulmonology. Mylee is scheduled for her bronchoscopy. However, it isn't scheduled until June 24th. We are a little conflicted because Mylee will hopefully be scheduled for vital stimulation therapy by then and if that is the case, her bronch may need to be pushed out further...or quite possibly she won't need one (the whole purpose for the bronch is to check to see if everything looks okay and to determine if anything can be seen that may be causing her aspiration) because we are hoping the vital stimulation will correct the problem...we will continue to wait patiently....
I am hoping for a restful afternoon...I am hoping everyone else has the same....
Remember the "spoon theory": http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Tuesday, April 22, 2008
I read the spoon theory today...I broke down in my office and cried...cried... and then cried some more. I haven't done this in a really long time....Fortunately, my husband was home and Mylee was taking a really good late afternoon nap...in fact, she is still sleeping.
We have had somewhat of a long day. Today was Mylee's Godmother's Dad's funeral. He was such a great man and he will be remembered for a really long time. He has a special spot in our hearts that will always remain...he too, earned his angel wings after battling cancer for a long time.
Mylee also had her developmental specialist at the house this afternoon after getting a late afternoon bolus feeding (Sorry honey! Mommy will be better at schedules tomorrow!) However, with as much interuption Mylee experienced in her schedule today she remained a princess!! My little girl is so well behaved!! I may be a little biased, but I think she is simply amazing - she seems to amaze me everyday....so, finally at 4:45pm this afternoon she zonked out for a nap (1st real nap of the day!)...
Back to the spoon theory...I received a special spoon pin to remind me to save a "spoon" for myself each day...and I have been holding onto this pin (honestly, I didn't know what it was and I didn't go to the website to check it out and I usually do!!)....so anyway, I read the "spoon theory" on another site and WHAM it hit me!! Moral of story....1st, please go to this website and check this out if you haven't already....2nd, remember someone else may have less spoons than you each day...and 3rd, for those of you who need it remember to save a "spoon" for yourself!
I too wish everyone out there an abundance of spoons!!
For those who are experiencing pain today....Mylee and I wish for you to be pain free tomorrow!!
Sunday, April 20, 2008
|Make a postcard - it's easy!|
Mylee is currently getting her first bolus of the day...As soon as I am done writing this journal entry I am going to get the albuterol out and give Mylee a breathing treatment....we haven't used albuterol in a really long time (almost 3 months)...that seems like a really long time to us! We have gone almost 4 months with no pneumonias and we want to keep it that way!!
I told Dave this morning if she continues to run a fever and sound as junky as she does that I will make an appointment with Dr. D (her pediatrician) early in the week. We have lots of appointments this week and will be visited by Grammy LaDonna and Uncle Troy next weekend. Uncle Troy has a conference he will attend first earlier this coming week and since he is here on the main islands (currently stationed in Hawaii) he is going to come to AZ to visit before flying back home to the islands...We are anxious to see them! And I hope Mylee is feeling better too!
Well, we have no plans today except to rest and get the remainder of the house picked up before the work week starts. I have several loads of laundry to finish and I need Dave to pick up the office. We will probably work a little in the backyard, continued preparations before the start of summer...It's really warming up - so we tend to work in the yard toward sunset when most of the yard is shaded!! We wish everyone a Happy SUNDAY!!
Saturday, April 19, 2008
We have no plans this weekend, we will lay low in hopes to clear up Mylee's congestion. We hope we won't have to get the albuterol out....she really sounds horrible throughout the night and has started her "stridor" or "snoring" again!
We will see Dr. R (neurosurgeon) on Friday and Dr. P (opthomologist) on Thursday...and therapist all throughout the week...We have started noticing Mylee crossing her right eye again... a little disappointing, but we were told her eye surgery may not be the only surgery she will need...We will question Dr. P this week... Mylee is also still experiencing what we have been told are "night terrors", we only had one episode this week (thank goodness) but they have become very frightening for myself....she will wake up from her afternoon naps in absolute hysterics...she is inconsolable for about 30-45 minutes and because she is fighting to be put down - I will gently set her down (in crib or on the floor) her eyes are squeezed shut and she looks as if she is in a stat of confusion because she will crawl into a wall (or if she is in her crib, she will bang her head into the side of crib)....we will discuss this again with Dr. R - we hope it is just side effects from the brain decompression....I will keep you informed!
On a lighter note - Dave said she took another 1/2 step this morning when he was working with her on walking....Still very wobbly and unbalanced, but we continue to work on this!! We hope everyone has a wonderful weekend!!
Thursday, April 17, 2008
These are the tiny feet that carried you that day.
First steps from my hands, I watched my baby step away.
During the coming years, I'll guide these tiny feet,
As they toddle 'cross the lawn, and safely cross the street.
They'll soon grow strong and steady, find puddles to kick and splash,
Pedal a two-wheel bike and win a school yard dash.
Kick a ball learn to dance, race a friend home from school,
Skip rope, jump in bed and dive feet first at the pool.
Your small feet may often stumble, scrape a knee or take a fall,
Misstep or need direction, or a model to stand tall.
Know I'll always be behind you, my love will give you wings,
To proudly fill the shoes, a grown-up life will bring.
The years will quickly pass, and these feet will learn to drive,
Walk the stage to a diploma, when graduation day arrives,
I'll watch through misty eyes, as you walk down wedding's aisle,
A family of your own, you'll start your journey with a smile.
Your tiny steps will hold our heart forever, for each tomorrow you will grow.
Today we'll hold you closer, for too soon these feet will go.
She collapsed on he floor in the kitchen with Papa Spray to sit with her newly found glow worm (mommy & papa Spray worked in the garages yesterday - Mommy found some of Mylee's older toys we had put away) She loves her glow worm baby Uncle Nicky bought for her! Please view the attached videos and share our happiness with us! Thank you again for all your love and support, we continue to ask for all of your prayers as Mylee continues to work towards her goals and accomplish her milestones!
Wednesday, April 16, 2008
We enjoyed Grandma and Grandpa Eaton while they were here and look forward to the next visit, hopefully in August for Mylee's 2nd Birthday. Mylee will have two birthdays this year...one in California and one here at home in AZ. We are also fortunate to have a visit from Papa Spray...he has been a lot of fun the past couple of days, this will be a short visit though...he is leaving in the morning. We will see both Papa Spray and Nana Cindy in Colorado in just a couple of weeks. Dave and I are really looking forward to this trip because we will stay a night in Denver (without the kiddo), this will be kind of a celebration of our anniversary and a well deserved night off!!
Mylee continues to amaze Dave and I. She has become quite the little princess....already talking back to Mom and Dad when she is disciplined (Dave and I can hardly stop laughing when she shakes her fingers back at us)...We are certaintly blessed!!
Monday, April 14, 2008
We also met a speech therapist from Children's Hospital who is one of the therapist to adminster the vital stimulation that Mylee needs. She said Mylee had a beautiful name it sounded familiar to her...I am really hoping since we were introduced to her that she will go back to her office and help speed up our case. We are currently on a waiting list. It makes me really sad to know so many children have aspiration and dysphagia issues....This whole journey in this portion of our life has really opened our eyes to those many people (mainly children) who suffer daily with rare illnesses & diseases no one should ever have to experience! If you are interested browse through Mylee's caringbridge site and read some stories of other children (and families of those children) who have signed Mylee's guestbook. These children are amazing and the bravest souls I have ever met! Mylee is one of many, many children who suffer daily.... despite not being able to eat each day, walk upright, communicate with her voice, and constant falling due to being unbalanced... our sweet baby continues to fight and live pain free with a smile on her face... She is our hero!!
We also a bit of a scare this afternoon with Mylee's feeding tube. We noticed it was a little loose so we checked the level in the balloon, sure enough it was only filled to 1ML of water - it should be around 5 or 6ML. Dave helped me fill it back up this morning and we went off on our way to therapy. Well I noticed it was a little loose again when we got home while I was changing Mylee's diaper. I went ahead and checked the levels (mind you I am by myself during the day) and sure enough it was back down to 1ML again! I called her surgeons office and spoke with a medical assistant who told me Mylee probably had a slow leak...she guided me through changing out the Mickey button...I was really nervous because I am by myself...I sucked it up and changed it without problems...Mylee is sure a trooper!
Friday, April 11, 2008
Lots of sunshine in sunny Arizona! It has been wonderful having Grandma and Granpda Eaton visiting with us this week. They will stay with us through the weekend and return home to Indiana on Monday. We have tenatative plans to check out the train in Anthem with Mylee tomorrow, I think this will be fun. We will bring bread crumbs for the ducks at the pond too! Mylee was visiting by her developmental specialist this morning, we had fun working on blowing the feather out of a straw. We will also be working with Mylee to get her to blow bubbles with a straw in a bowl of water or using the straw in the bathtub to also blow bubbles. This will help strengthen Mylee cheeks. We have started noticing that Mylee isn't interested in putting things in her mouth as much as she used to - we need to keep her interested with oral development as much as possible so when she does get the green light to eat again it won't be such a difficult transition. Mylee's speech therapist at St. Joseph's has been working with her on these skills too, this week we worked with different flavored sugars and let her dip some of her toys in water and then into the sugar. It was a lot of fun and very messy! I think I am going to buys some Easter Peeps and licorice and leave them out so they actually become stail (we want them very hard) so Mylee can work on her sucking sensations, this is also very good for oral development. We were also given lots of additional handouts this week. We are going to start working with Mylee on more sign language skills to help us understand her better. New things this week: Mylee has learned how to dial: 9-1-1 - much to our surprise, Mylee dialed 9-1-1. We thought she was just playing with the phone. We heard lots of long beeps from numbers being pushed. Dave decided to take a look at the phone and sure enough Mylee dialed, 9-1-1-7-5-5....oops! A few seconds later, ring...ring...ring. Dave answered the phone and it was Phoenix Police asking us if everything was okay.... Dave answered, Yes Ma'am - our 1 year old was playing with the phone! Mylee only gets to play with her pretend phones now!!! Mylee is not walking, however she has become quite the climber....We purchased a cushion chair for Mylee at Christmas time and she loves to sit and read her books in the chair. She has learned to stand up in the chair. Dave caught her standing in the chair one night this past week and took his pointer finger to shake at her while saying "Mylee, sit down!"...well, Mylee decided she had had enough of being told what to do....she looked up at daddy and took her finger and shook it back at him with confidence and said, "dhat dhon"....anyone have any suggestions how not to laugh or smile when your toddler makes these gestures when you are trying to discipline them??? This was quite the kodak moment and I wish I had had the camera!! Mylee has also started to push herself up from a crawling position into a standing position, she has done this a couple of times for about 30 seconds or more....this is very exciting!! We are still working on muscle stregthening, but I believe we are getting closer at her walking.....stay tuned!
Mylee was visiting by her developmental specialist this morning, we had fun working on blowing the feather out of a straw. We will also be working with Mylee to get her to blow bubbles with a straw in a bowl of water or using the straw in the bathtub to also blow bubbles. This will help strengthen Mylee cheeks. We have started noticing that Mylee isn't interested in putting things in her mouth as much as she used to - we need to keep her interested with oral development as much as possible so when she does get the green light to eat again it won't be such a difficult transition. Mylee's speech therapist at St. Joseph's has been working with her on these skills too, this week we worked with different flavored sugars and let her dip some of her toys in water and then into the sugar. It was a lot of fun and very messy! I think I am going to buys some Easter Peeps and licorice and leave them out so they actually become stail (we want them very hard) so Mylee can work on her sucking sensations, this is also very good for oral development. We were also given lots of additional handouts this week. We are going to start working with Mylee on more sign language skills to help us understand her better.
New things this week:
Mylee has learned how to dial: 9-1-1 - much to our surprise, Mylee dialed 9-1-1. We thought she was just playing with the phone. We heard lots of long beeps from numbers being pushed. Dave decided to take a look at the phone and sure enough Mylee dialed, 9-1-1-7-5-5....oops! A few seconds later, ring...ring...ring. Dave answered the phone and it was Phoenix Police asking us if everything was okay.... Dave answered, Yes Ma'am - our 1 year old was playing with the phone! Mylee only gets to play with her pretend phones now!!!
Mylee is not walking, however she has become quite the climber....We purchased a cushion chair for Mylee at Christmas time and she loves to sit and read her books in the chair. She has learned to stand up in the chair. Dave caught her standing in the chair one night this past week and took his pointer finger to shake at her while saying "Mylee, sit down!"...well, Mylee decided she had had enough of being told what to do....she looked up at daddy and took her finger and shook it back at him with confidence and said, "dhat dhon"....anyone have any suggestions how not to laugh or smile when your toddler makes these gestures when you are trying to discipline them??? This was quite the kodak moment and I wish I had had the camera!!
Mylee has also started to push herself up from a crawling position into a standing position, she has done this a couple of times for about 30 seconds or more....this is very exciting!! We are still working on muscle stregthening, but I believe we are getting closer at her walking.....stay tuned!
Wednesday, April 9, 2008
Mylee is always good and even took a tumble into the dirt a couple of times. We brushed off the dirt and on we went to see more animals! We will post more later this week. Enjoy the slideshow!
|Make a slideshow - it's easy!|
Tuesday, April 8, 2008
I have had the windows open all day, a nice cool breeze has been blowing throughout the house. It has made for some really great sleeping, Mylee slept for almost 3 hours this morning and she is currently taking another nap. We played outside in the sandbox with Grandpa Eaton for a little bit this afternoon and rolled the ball around in the grass too. Daddy has really been taking good care of the grass in the backyard which has made for great play area for Mylee. We need to take advantage of it now while it is still really nice out, before too long we will start to survive the desert heat! Mylee is preparing herself - she has been wearing her sunglasses all day....even inside!
Tomorrow we are back on schedule for therapy, she has speech and occupational therapy. We received a phone call today to start in home occupational therapy and will wait to hear from the actual therapist who has been assigned Mylee's case. We will probably start with this therapist mid May. It will be really nice when we have all the therapist coming out to the house. We are saddened though to leave the therapist at St Joseph's, they have become great friends too!
Saturday, April 5, 2008
Watch Mylee dance at the Wiggles:
Mylee at "The Wiggles" - 4/5/08
|Make a slideshow - it's easy!|
Friday, April 4, 2008
I am looking forward to this weekend, we are taking Mylee to see "The Wiggles" Live tomorrow evening! I want to make this weekend all about Mylee!! We really shouldn't spoil her as much as we do, but we have learned that life really is too short and why not! So, I will be spoiling her as much as I can!!
I will update as the weekend progresses and we will take lots of pictures of tomorrow night! Have a great Friday!!
Thursday, April 3, 2008
Today is Thursday, April 3rd, 2008! It is absolutely gorgious outside, blue skies and not a cloud in the sky. I have the windows open and the birds are churping! Mylee is becoming our little girl, she is no longer a little baby. She has her own baby now! She received this baby at Christmas time and just recently has really started to understand how to take care of it. It is the cutest thing to watch! Mylee pats her baby when she cries, holds her baby when the baby needs to go "night night", covers the baby with her blanket, and just this morning I surprised Mylee with the baby's stroller. Mylee immediately took the baby for a walk and of course had to take her shopping! Mylee is learning new things everyday and we are constantly trying to encourage her to talk, sounding out each word so she sees what the word sounds like. We continue to orally stimulate those muscles in her mouth by using toothbrushes, electric toothbrushes and oral gumming tools provided to us by her speech therapist. I practiced saying "baby" with her this morning and I think she is getting the idea. She made the "B" sound and was able to come up with "Ba", close enough for me for now! She is our amazing child and constantly surprises us everyday with improvements! I/We are so proud of her! Here are some more pictures of her taking care of her baby. See her video too. Mylee is such a good "mommy" to her baby, she loves to give her kisses and tuck her in with the babies blankets! Our little girl is growing up!!
Mylee and her baby video....
Wednesday, April 2, 2008
|Make a photobook - it's easy!|
Mylee had a great time this afternoon playing outside in the sunshine with the doggies. Max and Bobby are so good with her. It was beautiful today in Arizona, lots of sunshine with a slight breeze here and there! I think we could get used to these low 80's degree weather we have been having. We can feel the blossoms blooming though, waking up in the morning is a bear with our stuffy noses - but well worth it if you ask me!
We are watering our plants a little more these days, hopefully we will have some April showers this month before the real heat approaches the desert. We are looking forward to a fun weekend with the "Wiggles" Live show. We got a call this morning from Uncle Gene in Surprise and it sounds like Gina & RoAnna are flying out from Minnesota to visit. Mylee hasn't seen Gina since she was 8 months old, it will be fun reuniting these two and taking lots of pictures of course!
We went back to speech therapy today, Mylee was so excited to see Miss Nicole! Poor thing cried when we left. I made up for it though and we went to visit daddy at work! The girls in his office really love it when Mylee comes by to visit. We are off the hook with therapies tomororw, it's a good thing because Mylee has her MRI on Friday.
Tuesday, April 1, 2008
Mylee had her first visit today with Miss Lisa, this is her developmental specialist who will oversee all of Mylee's therapies with OT, PT & Speech. Todays visit was mostly paperwork (yes, more paperwork!). We are scheduled again with her next week. We will see Miss Lisa once a week for an hour. We also went ahead and rescheduled Mylee's PT & OT back at St. Joseph's, the other location in Carefree was too much for us right now. Plus, they are submitting the sessions to our insurance instead of using DDD. We figured we will go ahead and use outpatient rehabilitation at St. Joseph's until we run out of sessions, then we will utilize DDD and set up sessions at the rehab place in Carefree.
I put together a montage to express her story with picture, words and music. Fortunately, I had a little help with another website I found. I used some of her inspirational words, I hope she doesn't mind. If you are interested check it out - it is located in the right hand corner of this website. Thanks again to everyone for being so supportive of Dave and I. We love you all!!