A Windy Day...and a technology dependent child...

Yesterday was a crazy day. Wind gusts up to 90 mph and up to 102 mph just south of us. Shingles flying around. 60-foot pine trees uprooted. Trees snapped, branches broken. Fences of all kinds broken. Garbage flying around. Christmas decorations destroyed. Power outages.

I was worried throughout the day about the power going out. Praying that it wouldn't. The power at my mom's work went out and they were told to plan up to 72 hours before power would be restored.

As a kid a power outage was exciting and adventurous. Even as an adult power outages brought adventure. Other than as a grown up there is the worry of the contents of the refrigerator and freezer and freezing pipes...

Having a child who depends on electricity for life creates a very different adventure when the power goes out. This is not a fun adventure but one full of stomach twisting worry.

Most of Emylie's equipment has battery life. When the batteries are dead we then have to find alternatives....a generator with an extension cord and a way to divert the exhaust fumes from coming into the house or take her to a place with power - a kind neighbor has part of their home connected to a generator so when the power goes out that portion of their house still runs as if nothing has happened. (wouldn't that be AWESOME!) Thankfully when the power went out at our house it only was out for an hour and we didn't have to get to creative with our options. It was a huge blessing to have such a short time without power when others around us were out for much longer. I am also grateful for our wonderful neighbors who checked on us and offered there home to our family if we needed a place to go - thank you!

Concert for Emylie (31 of 31)

Today was the benefit concert for Emylie.
It was beautifully put together and the music and poetry were very entertaining.
Yodelling, fun cowboy poetry (I learned a few things about a cowboy), great songs, and a raffle and silent auction.

I enjoyed watching Emylie enjoy the music.

THANK YOU Karen, Rayne and Richard and all the others who helped make it possible.

THANK YOU to all of you who came out in the snowy weather.

My heart is full and I can't seem to put into words how it feels to see people come together to help my little girl and our family.

Thank you seems so inadequate.

(I am having trouble uploading the pictures...)

Color to White in seconds....(30 of 31)

This may be of little interest to you but I am feeling like I am having a difficult time coming up with #30 post. So...I am going to talk about the weather!

Early this evening I mowed the lawn.

It was cool outside but not bad.

Towards the end of my mowing I removed my jacket.

Cleaned up.

Ate dinner.

Looked out to see rain.

Got the kids in bed.

Opened the door when the nurse arrived only to see...

SNOW!!!

Holy Guacamole - it is crazy how fast the weather can change around here.

MOMS study (29 of 31)

During my pregnancy with Emylie I had a blood test done at 16 weeks that screened for a few different disorders. When the test came back abnormal the next step was to have an ultrasound done to see if the test was correct and if so for what disorder or if everything was okay.

The first of 2 ultrasounds was somewhat inconclusive. We had to wait 2 more weeks for the second ultrasound which showed the opening in Emylie's lower back and her diagnosis of Spina Bifida was given. At this time the radiologist told me to look up the MOMS study as not only a resource but also something we should consider. With more research we didn't feel like it was something we should participate in (for varying reasons), but I find it very interesting and amazing to think of the things that can be done. If you want check it out http://www.spinabifidamoms.com/english/overview.html

What do you want to know? (28of31)

Do you ever find yourself not asking a question for fear of offending someone?

Do you want to know how something works?

Do you want to know how someone feels?

Do you want to look at someone because there is something different about them but then feel guilty for looking because they have something different about them?

Since Emylie's birth, I have been more aware of others around me. And when I see someone with differences, I want to ask questions, but don't want to offend them and sometimes don't know how. I think it is normal to be curious. I don't think all looks are meant to be negative, perhaps just inquisitive. There are some that I have felt are more approachable and so I ask. I want people to be able to ask me questions. So if you have a question, let me know.

Spina Bifida website....(27 of 31)

A great resource:
Utah Spina Bifida Intermountain Support Group
http://utahspinabifida.org/

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

She makes my heart smile

The nurse that was scheduled to come tonight called off, so I am on night shift duty. Emylie had been asleep for almost 2 hours and I went to reposition her onto her left side. As I went to move her blanket and looked down at her legs I could tell that her left knee was up. Before Emylie was born I wouldn't have thought to much of this simple happening. But the simple fact that Emylie was able to get her leg in this position all by herself and while sleeping is simply miraculous.

I am incredibly grateful to be her mom. I am grateful for the joy she brings into my life.

What to do while Emylie's at school?

Having Emylie go to school has been an adjustment. She is loving everything about school. She loves the bus. She loves playing at school and she loves coming home.

Then there is me. :) Up front - I love that she loves going to school. I am just learning how to retrain my brain and do things I haven't been able to do.
For the last three years most of my days have been spent in the great room/kitchen area. I don't do things in other parts of the house. If I answer the door I am trying to make it quick while listening for Emylie. If nature calls, (yes - all of us have to now and then.) I hurry with the door open so I can listen for Emylie. When someone else is in the house that makes things a little trickier. I don't go outside without Emylie, I don't go downstairs without Emylie. Sometimes I have had to quickly run outside to help one of my other children who need help or step outside the door to make sure they cross the street safely. But I don't leave the room without worrying about Emylie's stability and safety.

So when she goes to school you would think I would have this new freedom. I know that while she is at school I can go downstairs or down the hall. I now I can start a load of laundry and not worry that the water is too loud. I can go pick tomatoes out of the garden. I can go get the mail. If I allowed myself I could even take a nap. Yet I find myself staying in the same part of the house that I normally am with Emylie. I find that I often have to remind myself that it is okay to do these things.

I know I am comparing myself to a dog but here is the best analogy I can come up with. If you put in an underground shock fence in your yard for your dog, the dog quickly learns that if they cross at certain points they will get shocked. Over time they learn to stay within the area. If you were to take the fence away, the dog would continue to stay in the same area they were trained to stay in. That is kind of how I feel. I know it will gradually get better and I will get used to this new freedom but it has been interesting to experience it. And in all honesty I miss my little girl like crazy! (what mom wouldn't?)

How...What...Where...When...

Probably since I was pregnant with Emylie, I have tried to think of what her future needs would be. Trying to figure out what type, style, layout of a home would work for her and our family (---it can be mind boggling). As her needs have and will continue to change, I have tried to think of everything I can with the knowledge I have.

Because where we are living has always been a temporary step, I have also tried to figure out where we should move to. Where would be the best place to raise our children and call home. At times I felt I wanted to stay close to my parents because of their support. How far will the nurses be willing to travel? We have known we haven't wanted to move any further from Primary Children's hospital than we currently are. Dave has had to step in and pick up the girls from school when they are sick or when the carpool wasn't available to because I was at home with Emylie. He also helps take all the kids to doctor visits and other activities. Which poses the question, how far away from his work should we go? I think (and hope) there will be a time when I will be able to take my kids to school and do all the mom stuff. Where will it be best for all our children? What are the schools like in the area has always been a concern for me and now it isn't just that but how wheelchair friendly are the schools? How does the schools and the school district take care of children with unique needs? These are just a few of the many thoughts I have had.

I have prayed and prayed for guidance, for inspiration. Knowing that the Lord knows better than I do, what can and will work for our family. Relying on the Lord helps because I know if I do my part and have FAITH, he will help me know what is best.

A couple months ago, I felt the gently promptings of a general area we should consider. I say general because that is exactly what it is. I don't know the exact side of town or the neighborhood or street but I do know it is not where we currently are at, and it is closer to Primary's but further from Dave's work. I no longer feel I need to be so close to my parents. I know they will still be there to support us when needed. I think having a start in an area where I haven't lived most of my life will be a wonderful adventure and I look forward to it.

On a Sunday evening the beginning of September, I was waiting for the night nurse to arrive and thought I would look online for house plans. I have done it before and found a room that I liked or a entry way that I thought was roomy enough to maneuver a wheel chair, so bits and pieces of houses. I have searched "house plans" in the google search before and usually came up with the same websites. But this Sunday evening was different...a new site was first on the list. As I looked through the plans I found one that stood out above any I had ever found and it gave me HOPE. This house plan wasn't anything fancy nor did it have all the solutions, yet surprisingly it was almost perfect. I have tried several times, unsuccessfully to think or draw up a layout that would work. This floor plan still needed some adjustments but it somehow just felt right. Dave felt the same when he looked at it. I felt as if the Lord was ever so gently showing me and answering my prayers. It is hard for me to put into words other than to say I felt more hope than the day before. I don't know for sure if we will get to build a home or even that home, but I know without a doubt things will work out.

Preschool

Emylie started preschool last Thursday the 8th. We found a nurse to go to school with her after interviewing 2 additional nurses. Day 1 of school was exciting and nervous all together. Emylie didn't enjoy the bus ride, the nurse told me she cried the whole way to school. I met up with Emylie and the nurse at the school. I don't know about Emylie, but I was really glad I got to go with her for the first day. I tried to just observe and also be available if the nurse had questions or needed help. Emylie did fabulous at school.

She met her teachers: Teacher Rachelle and Teacher Jill

She got right in and played with the toys and her teacher.

She participated in circle time as they just happened to sing one of her favorite songs: The Wheels on the Bus.

She pretended to have a snack with the other kids. Teacher Jill was fantastic at pretending with Emylie. She gave her pretend water and pretend marshmallows - they even counted them as they were given.

In small groups she got to cut straws with scissors. She thought one of her classmates was hilarious as he said "snap" as he cut the straws.

Overall I think Emylie enjoyed her first day of school. Friday she did a little better with the bus ride and Monday the nurse said she didn't cry at all either way.

I am so grateful she is enjoying school and that she looks forward to going. It sure helps when it comes time for her to leave. It is definitely a adjustment for me and each day gets a little easier. I cannot describe how much I miss her while she is gone.

An Awesome Moment!

You know what is so amazing? ---Seeing your little girl crawl on her hands and knees a couple feet to get the toy she wants to play with!!

Happy 3rd Birthday!

I don't know where the time has gone but my little girl turned 3! We celebrated on Saturday and invited some of her favorite people to join in the fun.

When I asked her what she wanted to do on her Birthday she said blow out candles. So while she cannot eat cake we still made it to her liking. :) Originally she said she wanted a jungle book cake and then a Donald Duck cake and then a purple and green cake and then a Minnie cake. So I tried to do a little of everything.

So this is Mickey, Minnie, Donald and Daisy driving through the zoo. The only thing missing is the purple.

Emylie has attended other birthday parties and has enjoyed the pinatas so we got a Minnie pinata.

She loved opening the gifts and her facial expressions were priceless. She was very kind and polite and a joy to watch.

Happy Birthday sweetheart!

Feeling Better!

Emylie is doing better today. We have adjusted her diet a little to give her tummy a rest since Wednesday night. We will gradually increase her volumes back to her regular amounts but will do it slowly. We measured her stomach on Wednesday when it was distended and again on Thursday. She measured 1 3/4" less on Thursday than on Wednesday. Her poor little tummy was tight.

School Nurse Update

This afternoon we interviewed 2 nurses (nurses #4 & #5) to go to school with Emylie. We had the school district nurse come and also asked a family friend who is a nurse come to listen in and ask questions where they felt needed.

Nurse #4 - Never changed a trach and no vent experience!! At this point I wanted to cry and tell her she could leave because there was no point in continuing. I was frustrated that the company sent another nurse that had not changed a trach or worked with vents.

Nurse #5 - Has potential. She worked as a tech in the PICU at Primarys before getting her RN and has actually changed a trach AND has vent experience. She interviewed well and I feel she might be a good fit. Dave and I feel we will have her come spend some time with Emylie in the home while we are here and we can go from there. :)

What a day!!

We think Emylie has the stomach flu! I am going to give a warning that I may discuss some body fluids that might make a weak stomach turn. I will try not to give to much information though.

Tuesday during the day she had not urinated as much as normal. By evening her stomach was distended and when I tried to get any excess air out through her feeding tube I got some but her tummy was still big. A short time after she had 3-4 watery stool diapers. She fell asleep for the night. No more stool diapers for the nurse and she slept well.

First thing in the morning when I was with her she had another watery diaper but was realively small compared to the ones from yesterday. I figured it was the last of whatever and figured she would be on her way to getting better. Elizabeth got her tonsils out on Monday so I made arrangements for a nurse to come be with Emylie for the day so I could take care of Elizabeth.

The nurse arrived and Emylie's tummy didn't stop. We would finish cleaning up after one diaper change and it seemed she needed to be changed again. I had gone to the store to get Elizabeth some more pain medicine and when I got back the nurse told me Emylie had thrown up! Surprised because she has a nissen, where she is not supposed to be able to throw up and frightened at being in unfamiliar territory. She thankfully didn't aspirate on any of it and the nurse took great care of her.

By the time Emylie fell asleep for the night I think she had about 20 diapers. She was exhausted!!! I am so grateful to have had help today with Emylie. I am so tired from all the day had to offer and glad I had help.

Pre-School

The plan for Emylie to start pre-school today has been in the works for months. The talks and preparation began back in the early Spring. I knew Emylie would need a nurse to be with her and had asked the nursing company we currently use to start sending nurses so we could all get familiar with each other. A few months later I learned that the school district contracted with a different agency to provide the nurses for school.

I tried to be proactive and tell the district that I would like to meet the nurses a couple months in advance and also like to have them do a few shifts at home with Emylie so Emylie, Dave and I were comfortable with them and so the nurse was comfortable with Emylie. They kept telling me they would make sure things would work out and they would make sure we met the nurse in advance.


I got a call the 1st of July from the special needs nurse with the school district. She left a message notifying me that the new nursing company would be contacting us by the end of July to make arrangements to meet the nurse.


The nursing company called the first week of August. They had a nurse for Emylie. She wanted to read Emylie's care plan before coming, so a time was scheduled the following week to meet. A couple days later the company called to tell me nurse #1 no longer was able to do the job and they were sending nurse #2. And that I would like nurse #2 better than nurse #1. The day came, the anxiety level was high in preparation and nurse #2 never showed up. When I tried to call the company it was after hours and they didn't even have the nurses information in the computer - she was that new to the company. I called the following day and they had not heard from nurse #2 but gave her until the end of the day to call. She never called and the following day (Aug 12) the company told me they would have to put an application out for another nurse. WHAT!!! You don't have another option?


A week after nurse #1 & #2 were supposed to show I got a call from the company informing me that they found another nurse (#3). This was Tuesday before the 5K. I had all the to-do's for the 5K, Emylie's birthday, back to school prep, a family reunion among all the regular to-do's. It was important to me to find a nurse for Emylie but honestly I was frustrated that it was the week before school and they were just sending a nurse. And I didn't really have a lot of availability to do meet. I tried as best as I could to get things in place and was told it wouldn't be last minute and here we were - - last minute. We scheduled a time for Friday morning when Dave could also be there to meet her.


Friday, nurse #3 shows up. She has NEVER changed a trach and has very little vent experience. She was very nice but those 2 things are very important things to know how to do. I NEED to know they can change her trach and take care of her on the vent as well as off. When I found this out I really just wanted to cry and say thanks for coming and see her to the door. I didn't feel like there was any reason to continue. But I continued with the list of questions I had only to find out a few more things that were a little concerning.

After talking things through with Dave we felt we knew we needed a nurse who already knew trachs and vents to feel like we could feel comfortable with them taking Emylie out of the house. On Monday we tried to see what it would take to use the company we already use for nursing care. We were told that the district really wanted it to work with the contracted company and so to try another nurse.


This morning I talked to the director and she informed me if this company didn't work out they have a 2nd company they contracted with that we could try. It still isn't the company we use. I didn't ask the director the name of the company so had to call back and ask her secretary. It took her a minute to find out and when she got back on the line and said that is was M#$%^& - I said "oh that is even worse!! I have not heard one good thing about that company!" Wow! (I don't think the secretary knew what to say)

Later in the day I called the nursing company to make sure they knew we did not want to use nurse #3. She said she already had two more applicants for us to interview. We scheduled to meet them both this coming Thursday. Apparently they both have trach and vent experience...

......to be continued......

Thank You!

The 5K came together nicely yesterday. I will post pictures and more details soon. For today I want to say THANK YOU to all of you who came and to all of our volunteers. Thank you to each of you for making it a success! We couldn't have done it without you.

Trach comes out twice in 3 days...

Trach = Airway

Trach out = No airway

Emylie's trach is changed weekly. Even with those planned changes, my adrenaline increases...I get nervous, scared, anxious, emotional (but well kept together). We do it and it goes well.

When the trach comes out unexpectedly...all those feelings are magnified and major fight or flight kicks in.

Tuesday morning I was getting ready for the day. The night nurse was still with Emylie. I heard Emylie crying and knew by the sound of her cry something wasn't right. I went to the bottom of the stairs to try and listen for more information when I hear the nurse say, "hold on...we got to get it back in." I couldn't get upstairs fast enough. Thankfully by the time I got up there the nurse had Emylie's trach in and all was well other than the emotional upset Emylie and each of us were feeling.

Tonight I was reading books to Elizabeth and my niece when I heard alarms and then my parents yelling for me. I flew upstairs as fast as I could to hear Dave say, "Emylie!" The tone in his voice...I've heard before...it is how his voice sounds when he is trying to make sure she doesn't pass out. As I got around the side of her bed she was a dusky color. Dave had a new trach in his hand. He put it in. Put the vent on. Her coloring improved. He sat her up. I attached the ties and turned up the oxygen. She was better other than the tears running down her face and the emotions. I wonder what she feels and how frightening it is for her. I know what I feel and cannot imagine how she must feel when it happens.

A fever???? What do you think? What do you do? With my other kids, depending on how warm they are and how they are acting depends on the answer. Usually you watch for other symptoms and go with it.

With Emylie you kind of do the same thing but NOT.

A week ago, Emylie woke up with a fever over 100 degrees. My anxiety level immediately increases. I start with the check list in my head. How does she look - a little tired still. Listen to her lungs. It sounded like air was passing through her lungs well, but there was a little something different. And because I am an amature I don't know all the technical terms for lung sounds. I know what her clear lungs sound like and if they are different, I just don't know what to call the different. Her urine had been questionable for a few days. I had already cathed her that morning before taking her temperature so I figured a few hours later I could cath her again in a sterile cup and send it for a culture. Crazy thing...when I cathed her a few hours later her urine was clear as could be - - go figure. I called the doctor office and spoke with the nurse. Gave her the details and she said just to watch her and not worry about a urine culture. Emylie was playful through the day. Her fever got as high as 101.8, she had a rough night, increase oxygen needs, increase secretions, a clear runny nose and a sound in her lungs that sounded like someone rubbing a inflated balloon. After her restless night and the nurse confirming the sound I heard in her lungs, I decided to cath her first thing and take the urine to be tested and while I was there have the pediatrician listen to her lungs. I cathed her and of coarse it looked crystal clear again!

Due to the fact that we only have one vehicle and the doctors office is within walking distance I figured we could walk to the office. I started to get Emylie and all her equipment ready. I also was trying to get her sisters and cousin on board for the walk too. Just when I had them convinced this would be a fun walk up the big hill I realized a very important piece of the stroller was missing... the bottom tray that holds the suction machine and the vent. It was in the car with Dave at work. Hmmmmm - I could probably just carry the vent on my shoulder!?! It is heavy but a mom has to do what a mom has to do.

Dave came to the rescue though and brought me the piece to the stroller, told me he would stay with the three girls at home and I could take Emylie to the doctor in the car (taking her in the car by myself is a whole other post I will have to tell you about). It almost felt like more work to pack her up in the car but we did get there faster and with air conditioning. :)

I gave the doctor Emylie's urine and they got her back in a room. The doctor came in and said the initial test they do on urine came back negative. Great - NO UTI! She then listened to her lungs and said the sounded GREAT! This is the time when I start to think I am a paranoid mom and that the doctor must think I am crazy and over protective. I am glad the urine looked good and that her lungs sound clear. We go out the door thinking she must have a virus and cross our fingers she stays stable enough to stay out of the hospital.

Update...a couple days later I got a call from the pediatrician telling me that Emylie's urine culture was growing. We had to wait another day to find out exactly what grew and what it was resistant too. Bummer that she has a UTI, but glad to get it taken care of.

Pre-Registration ends July 31st

Remember to guarantee your Little Miracles 5K t-shirt you need to

pre-register by July 31st.

Registration will remain open online through August 19th and t-shirts will be given based on availability.

The Celebration is going to be great! We have a bounce slide and house, cotton candy, snow cones, candy cart, darling boutique items with some great vendors. We will also be selling cookbooks at the boutique too as long as we are not sold out - they are hot items.

Come have a fun morning with the family - August 20th!!

A Friend We Didn't Dream Of...

Emylie started going to horse therapy in April. It was our hope that it would help strengthen the muscles in her trunk.

Week 1. It is obvious by her darling little crying face, that she didn't love it or like it, but at least she got ON the horse and went around the arena once. Her sisters enjoyed the extra time Emylie didn't take to get a ride in themselves. Even though the lessons were for Emylie our family enjoyed going together.

Week 2. The second session was a little better than the first. I think she went around the arena a few times. She was more calm until the horse sneezed and sneezed and sneezed! Then the tears came and she signed "all done - all done". Once she was off she was happy to tell Daddy she rode a BIG horse.

Gradually from week to week she became more and more comfortable. She got excited when we told her she was going to horse therapy. She even asked to go see the horses. She rode for the entire session. She got more and more familiar with the sounds the horses made. She grew to love the volunteers, especially Valerie and Cindy. The last few weeks she would get so excited to go show them her painted fingernails. She got stronger.

The last week Emylie went right to Valerie to get on the horse. She was comfortable and relaxed. She even rode on the horse by herself with two volunteers holding her legs. She didn't enjoy touching the horse but did really well. It is so amazing to see all she gained from horse therapy. To learn how amazing these horses are and how they help people. What an amazing program. We feel so fortunate that she has grown to enjoy it and that it is helping her.

Thank you to Cindy for running an amazing program and to Valerie, Andrea and all the other volunteers who have helped Emylie and so many others!

Happy Birthday America!!

We love the 4th of July and all the celebrations.

And what would the 4th be without a parade?

We love to see the jets (or helicopter for this year) as they fly over the parade route, the American flag, the military, the floats, the candy, and being with family.

Emylie wasn't very fond of the sirens on the fire trucks at the beginning of the parade. She covered her ears and got Grandma to help. She enjoyed all the other bands and bagpipes. She even did a little dancing.

Emylie loves temples and got excited as she saw this float coming with a temple on it.

Emylie saying, "temple, temple"

It's the yogotogo float. A family favorite. :) If you haven't been to yogotogo you need to stop by one of their locations (Centerville and Kaysville). Yummy - cake batter yogurt with snickers and raspberries. My mouth is watering. You can make your own creation - you don't have to get what I do ;)
All the kids enjoyed getting the candy. Emylie even got in on it. "I want one," she would say. Or if one came by her, "get it, get it." She had a good collection and was happy just to hang onto the bag. I wish the other kids didn't want to eat their candy collection. :)
The evening of the 4th we went to the fireworks. Emylie wasn't sure of those either. She started out covering her ears and saying, "wow", "beautiful", "wow", then I think it got to be to much and she said, "go home now, go..go." My brother asked her after if she liked the fireworks and wanted to go see some more. She turned away from him and wouldn't talk to him anymore. lol.