Happy Halloween!! (26 of 31)

I love this time of year and I am LOVING the awesome weather we are having today to go with all the festivities!

In a few short minutes school will be dismissed. Kids will run home to get their costumes on and then out they go to collect treats.

Emylie is excited to go trick-or-treating again and so are her sisters. I am excited to see their excitement and enjoyment of the evening. As I am contemplating going around the neighborhood with Emylie in her wheelchair, I cannot help but wonder how rolling versus walking changes the way you trick-or-treat. It may change it a little but I am sure we are going to have a great time!!

A little something about Spina Bifida (25 of 31)

Okay, since it is Spina Bifida Awareness, I thought I would add something more topic specific.

A child with Spina Bifida might have loss of feeling in their legs. For me, and perhaps for you, my initial thought goes to the ability to walk. Which of coarse is a major part of that. Another side of that is.... is it cold, hot? Some cannot tell. If they were to go down the slide at a play ground and it is hot, they wouldn't know. If the buckle in the car is hot and touching their leg, they might not know. If their feet are cold, the body signals might not relay the information accurately and not warm up like they generally would.

This is just one part of all that Spina Bifida can involve.

Pumpkin Carving (24 of 31)

What would Halloween be without sticking your hand in a pumpkin to pull out seeds (to be cooked and consumed later) and slimy pumpkin guts.

Can you guess which one is Emylie's?

Trunk-or-Treat (23 of 31)

Today the family is all feeling better. So we rolled on over to the Trunk-or-Treat. The girls were all excited for the party, especially Emylie. She was excited to put on her Minnie Mouse costume and get in her wheelchair to go have some fun.

Ellie being the good big sister that she is took Emylie to fish and play the bean bag toss. Emylie was thrilled to pick her prize - Mickey Mouse Go Fish cards!

A short time later we went outside for trick-or-treating and she LOVED IT! Even though she cannot eat the candy she enjoyed getting it and putting it in her bag. She realized that some candy (a box of nerds) made sound. So with each new piece of candy she shook it to see the sound it made. She would quietly say, "trick-or-treat" in between cars and then when asked to say it, she would get shy and reach for my hand. After we had gone to each car and were headed back she very loudly said, "trick-or-treat!, trick-or-treat!"

Afterwards we rolled back home, I not thinking it through well enough did not bring a flashlight. So Grandma was kind and followed behind us in the car to give us light. Emylie would go forward a little, stop and then ask, "where's Grandma?" I would tell her that Grandma was behind us shining the car lights so we can see where we are going. To which she would say, "Oh, thank you Grandma!" She repeated that conversation a couple times. She has such a kind heart and I love to hear and see what she expresses.

It is that time of year...(22 of 31)

The stomach bug has hit and it has hit us all. Yucky!!

I hope it gets out of the house quickly!

Sorry that this post is not something more interesting, but I don't have any energy today.

Up to Date (21 of 31)

I am UP-TO-DATE on the posts! Yippee!!
If you couldn't tell I got a little behind.

So for today's post

I AM CAUGHT UP!!!!

On a cute note....Emylie was looking at pictures on the camera and saw a picture of her Aunt Michelle. And ever so sweetly said, "I love you, Michelle."

Increased heart rate (20 of 31)

Yesterday evening Emylie's heart rate was higher than normal both awake and asleep. Her stomach was a little distended, so I vented her stomach and didn't get any air out. Nothing else was out of the ordinary...

Fast forward to this morning...her heart rate was still higher than normal and within an hour I figured out the reason. Diaper change...didn't even get a diaper on...diaper change...bath...diaper change...diaper change...etc...she has an upset stomach.

She took a much needed rest.

Shortly after waking from her nap she was playing on the floor next to her bed. Dave stopped by the house for a minute and after he left Emylie began crying. I told her "Daddy, will be back soon." She nodded her head in acknowledgement but continued to cry. Her lips started looking a little purple. I started to suction her and she started to fall backwards (almost like she was passing out).

Turned oxygen on, suctioned.

No improvement.

Thoughts of her dying were racing in my mind.

The steps of what I need to do are running through my mind. I pick her up, prepared to do an emergency trach change.

Suctioned again and her coloring started to improve and through the tears she says, "I better."

I am humbled every time something like this happens. How fragile each day, each hour, each minute is. I am INCREDIBLY grateful for each minute I have with each member of my family.

She began the day with an elevated heart rate.

My heart rate has now joined hers.

I hope she recovers quickly.

Nurses (19 of 31)

Since Emylie came home from the hospital with her trach & ventilator we have had nurses in our home to help us care for her. We have nurses who stay up at night with her and we occasionally have nurses come during the day so we can get things done around the house or if we need to leave. We have had nurses we have loved, some we like, some who change jobs and we miss and some we have asked NEVER to come back. We also have nurses who have become dear friends to Emylie and our family. For all the nurses who help us take care of our little girl, I am extremely grateful! I am grateful for the services that we have been blessed with that make having nurses possibly. Each night when the nurse comes, I am grateful. For I know without their help we would not function as well. THANK YOU to all of you!

Meeting... (18of 31)

This afternoon our family had the opportunity to meet some special people.

Richard & Rayne Olsen

&

Rick & Karen Daniel

Karen and Rayne are the masterminds behind the benefit concert on the 5th of November and Richard is performing. I am so grateful to have met them. They are kind hearted people with genuine hearts.

I forgot to take pictures (I'll have to get a copy from Karen).

If you can make the concert (1p-4p) I think you will enjoy it. Also (whether you can come or not) don't forget to get your raffle tickets ahead of time or at the door.

Raffle tickets will be sold for $1.00 per each or 6 for $5.00

Need not be present to win with the exception of the “Grand Prize”, which will be a quilt.

They have also added a silent auction to the event.

Contact: Karen Daniel: C – 801-675-1768 H – 801-394-9002 Rayne Olsen: C – 801-726-0486

A great day with the family (17 of 31)

today was different
unlike most others
today our family ventured out...
to places we usually don't
today we:
took a drive to Snow Basin to have our family pictures taken
it was a beautiful morning
looking at my children all happy and surrounded in God's creations
beautiful fall colors
emotions of pure happiness as I watched my children
watching as each of my daughter enjoyed:
throwing leaves in the stream
and
picking up a handful of leaves and throwing them into the air
it was perfect moments
and I couldn't have been happier
I didn't want it to end

We came home
took some additional pictures
repacked the bags for a longer adventure
checked the departure times
the kids didn't know where we were going and the suspense was building
"give us a clue...what does it start with?"
"f or t. Depending on what you call it."
We are loaded in the car
"tell me one more clue"

"it is red, white and blue"

"It's the American Flag!?"

We pulled into the Front Runner Station and cheers were heard all throughout the car.

To say they were excited would be an understatement

We all boarded the train

( something 4 out of the 5 of us had never experienced)

a few minutes later we were off to...

Temple Square in Salt Lake

It was fun to walk around and see things through our children's eyes

We briefly spoke with some sister missionaries

Ellie said, "you just talked with real live missionaries!"

I loved to hear her excitement

We walked around

we loved being so close to the temple

they enjoyed playing in the water

we went and watched the movie in the Joseph Smith Memorial Building

if you haven't scene it, it is a good one!

we were told the movie had been changed a little from its original version

after the movie I think we were all a little worn out

and decided to head for home

back on the train

All and all it was a GREAT day!

It was WONDERFUL to be out together as a family - all 5 of us!

HEAVEN'S VERY SPECIAL CHILD (16 of 31)

HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“Her progress may be very slow
“Accomplishment she may not show.
“And she'll require extra care
“From the folks she meets down there.
“She may not run or laugh or play
“Her thoughts may seem quite far away
“So many times she will be labeled
“'different,' 'helpless' and disabled.
“So, let's be careful where she's sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they'll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven's very special child.”

by Edna Massimilla of Hatboro, Pa.

Horse Therapy (15 of 31)

Another fun day at horse therapy!

CT-Scan (14 of 31)

Emylie getting a ct-scan when she was about 5 months old.

I love this picture!

Time with Dad (13 of 31)

I have THE BEST husband and my kids have AN AMAZING father! I am so grateful to have a husband who can hold down the house so that I am able to leave and feel confident all is well at home. He is a wonderful guy who is not afraid to get involved with all aspects of our children's life's and for that I am incredibly grateful! I wouldn't be were I am today without him.

Tonight he was the one and only in charge as I went to a baby shower!

Thanks Dave!!!

Monday - School Day (12 of 31)

Packed up and ready to go!

Emylie LOVES going to school. It has not gotten old at all for her. When her older sisters wake up and go to school she wants to know if she gets to go too! When you tell her yes it is school day, she is full of smiles and is willing to do what needs to be done to get ready to go.

While we are outside waiting for the bus she will ask, "where's the bus?", "Mom, where's the bus?"

Strengthening her ARMS (11 of 31)

Emylie's physical therapist from Spina Bifida Clinic talked to us about strengthening Emylie's arms. He said she is going to need STRONG arms in order to walk. So...he had us pick up this wheelchair he modified that she controls with her arms. She loves it (so does her older sister)! When she is off the vent we need to get her rolling around the house in this. Crawling is also wonderful for her arms and we are also looking for a play gym we can modify so she can pull herself up to a landing and then slide down.

Dentist Visit (10 of 31)

Visits to doctors and Primary Children's Hospital are very much a part of Emylie's life. The ability she has to be calm and cheerful when she is there waiting for something is nothing short of amazing. I LOVE the peace she has about her, I LOVE that we can laugh and play while we wait. It definitely helps calm my nerves (I don't have the talent she does).

On Tuesday we took Emylie to Primary's to have her teeth cleaned in the dental OR. We knew she was in good hands with her dentist, Dr. Cameron Quayle and after meeting the anesthesiologist we felt he too was going to take good care of her. Sylvia the nurse we have scene a few times when Emylie has had her bladder studies. A familiar face is always nice (well I guess when you have had a positive experience with said familiar face).

Emylie did INCREDIBLE! I mean just look at her. The anesthesiologist took her out of my arms and carried her into the OR. Dave and I were able to watch from the doorway. She was calm as could be as he talked with her. She was on his ventilator and just sat there until she got too sleepy. The nurse and anesthesiologist laid her back and about 40 minutes later Dr. Quayle came into the waiting room to tell us all went well. I am so grateful for such amazing people who take care of my daughter when I am not able to do what they do.

Flexibility (9of31)

I have learned that life and all the things it has to offer are not always going to go according to plan and that being flexible makes the ride a little smoother. The more flexible you are the easier things can be. I also think sometimes being too flexible in some regards can cause more harm than good but for the most part being flexible is a good thing.

For Emylie...she is a master of flexibility in all aspects!

Will she walk? (8of31)

YES – at least I believe she will.
When a child is born with S.B. I don’t think the doctors like to tell you yes or no. I understand why they don’t. If they told you yes and then your child doesn’t you would be mad and devastated. If they told you no, then you might give up hope and not try. So while it hasn’t been said by most of the medical professionals in Emylie’s life (which is fine), I BELIEVE SHE WILL WALK. I don’t know how much or with what assistance but I have HOPE!

Shunt (7of 31)

Emylie came home from the hospital a week after birth. She was monitored closely in the hospital to see if she would need a shunt. Her head circumference was measured multiple times a day. This continued when she came home. I was so worried. I measured probably every time I changed her diaper. I would call the Nurse Practitioner at S.B. clinic and tell her the measurements to which she would tell me she thought she was still ok. Somehow that calmed my worries, for at least a few minutes anyway. When we took Emylie to get her stitches out of her back we wanted the Nurse Practitioner to look at her head while we were there. It only took one look and she said, “I think it is time.” She sent us back down the hall to schedule the surgery with the Neurosurgeon and the next morning her shunt was placed. The shunt drains the excess fluid out of the ventricles in the brain down into the abdominal cavity.

This is Emylie the morning of her shunt surgery. Looking at this picture breaks my heart. She woke that morning with “sunset” eyes. This is what they call the eyes when they look this way from the pressure in the head pushing down on the eyes.

What is your mouth for when you don't eat with your mouth? (6of31)

For Emylie it holds a source of comfort...her trusted friend...her binky. Emylie loves her binky. I know she is three and shouldn't have a binky, but because she isn't able to have anything else in her mouth I can't bring myself to take it from her. If she is sad, she asks for her binky. If she is happy, she asks for her binky. If she is scared, excited, doesn't want to talk, a little shy or timid, or playing...she asks for her binky.

Do you ever wonder where life is going to take you? (5of31)

For Emylie, I think she is going to take life by the hand and take it wherever she desires. She knows how to roll with life and how to be happy. I have no doubt she will have the inner-strength and determination to accomplish what she wills.

I have Spina Bifida, but that is NOT who I Am! (4of31)

I am a little girl
With feelings just like you

I love to laugh

I love to learn
My legs may not work like most but I will find a way...
I can stand with help

I enjoy playing with others and going to school

I have a light about me that brings happiness to others
I have a family who loves me and am a daughter of God

Spina Bifida Clinic (3of31)

We are very grateful to have the Spina Bifida Clinic at Primary’s. This is a huge blessing. At Spina Bifida Clinic all the different specialists come and we get most doctor visits done with one visit. Emylie's visit yesterday was busy, busy, she had visits with: the orthopedic, dietician, physical therapist, geneticist, pediatrician, nurse, nurse pracititioner, neurologist, and urologist. She was weighed and measured and thankfully this appointment had little poking. Emylie was more calm at this appointment than she is at the trach/vent clinic. I think it is because she knows one of the doctors there sticks a tube in her nose.
Her calories were increased as well as her fluid intake, a “potty training” program was briefly discussed, her scoliosis was looked at and several other things as well. The physical therapist discussed some ways to increase the strength in her arms to make her more likely to walk and almost 5 hours later we were on our way home.

Spina Bifida Clinic - the first of many visits to come... (2of31)

When I found our baby would be born with Spina Bifida we got a call from the Spina Bifida Clinic at Primary Children's Medical Center (so thankful this is around and so close). We met with the Nurse Practitioner at the clinic a few times before Emylie was born to discuss some of the things we could expect.

* basic understanding of S.B.

* because of the level of the opening in Emylie's back (usually the lower the better) she would likely have limited mobility with her legs and possible bowel and bladder issues.

* Shunt - 90% of kids with S.B. need shunts to help drain the extra fluid out of the ventricles in the brain. So we were informed of the signs to indicate whether or not she would need one.

* it was also mentioned in one of the meetings that there was a very rare chance that there could be more complications. These complications were so rare that they had to mention them but then told us not to think anymore about them because they were so rare. I went home and tried to remember some of them and Dave reminded me that they told us not to even think any more about them, so not to worry. (At 4-5 weeks old we were told Emylie had these rare complications)

Spina Bifida Awareness Month (1of31)

October is Spina Bifida Awareness Month

It also happens to be Down Syndrome Awareness month. I follow another families blog who have 2 amazing daughters who were born with Down Syndrome. She has challenged herself to blog 31 days to raise awareness about Trisome 21 and invited others to join in and blog for 31 days (doesn't have to be topic specific). I am going to take her challenge and try to blog each day for 31 days. If there is something you wish you knew about Spina Bifida or specifically about Emylie, please let me know and I would be happy to reply.

So WHAT is Spina Bifida?
Normally, during the first month of a pregnancy, the two sides of the spine (or backbone) join together to cover the spinal cord, spinal nerves and meninges (the tissues covering the spinal cord). Spina Bifida refers to any birth defect involving incomplete closure of the spine.
Myelomeningocele is a birth defect in which the backbone and spinal canal do not close before birth. The condition is a type of Spina Bifida (this is the type Emylie has). A newborn may have a sac sticking out of the mid to lower back. The doctor cannot see through the sac when shining a light behind it.

Symptoms include:
•Loss of bladder or bowel control
•Partial or complete lack of sensation
•Partial or complete paralysis of the legs
•Weakness of the hips, legs, or feet of a newborn
Other symptoms may include:
•Abnormal feet or legs, such as clubfoot
•Build up of fluid inside the skull (hydrocephalus)
•Hair at the back part of the pelvis called the sacral area
•Dimpling of the sacral area

A question I had while I was pregnant - - how will she look?
Answer: A healthy little girl, with an opening in her back.

LITTLE MIRACLES BENEFIT AND CONCERT FOR EMYLIE

LITTLE MIRACLES BENEFIT AND CONCERT FOR EMYLIE
WHERE: Ogden Union Station IN THE GALLERY 51 RM
WHEN: Saturday November 5, 2011
TIME: 1:00 to 4:00
Please come join the fun and entertainment. The entertainment will include singer Richard Olsen playing lead guitar, his wife Rayne who plays the Strum Stick, June Crosby fiddle player for Utah Symphony for 27 years, Kurt Argyle Bass player and Steve Spencer a Cowboy poet. The fun includes a raffle for many fun and exciting gifts. You need not be present to win.
Emylie was born with Myelomeningocele, Spina Bifida, a permanently disabling birth defect with symptoms usually causing: loss of bladder or bowel control; partial or complete lack of sensation; partial or complete paralysis of the legs and weakness of the hips, legs and feet. She was also born with Arnold Chiari II Malformation and hydrocephalus. This disturbs the natural flow of spinal fluid and causes “water on the brain”. Emylie and her family have been living with her grandparents.
Help us build a home for Emylie and her family. Emylie needs a large room to accommodate all the equipment that helps her make it through her days and nights. She needs an accessible home. Nursing staff is with Emylie every night.
TICKETS FOR THE FUNDRAISER WILL BE: CHILDREN 5 AND UNDER WILL BE FREE
6-11 YEARS OF AGE $4.00
12 AND UP $12.00
FAMILIES UP TO 5 $25.00
Raffle tickets will be available. Need not be present to win with the exception of the “Grand Prize”, which will be a quilt. Many other prizes will be available.
Raffle tickets will be sold for $1.00 per each or 6 for $5.00
Contact Information:
Karen Daniel: C – 801-675-1768 H – 801-394-9002
Rayne Olsen: C – 801-726-0486