It's non-repairable

Friday the 21st of April I was on my way to the elementary school when this happened. It does not appear too bad but the van was not drive-able, side air bags came out and after review, insurance has determined it non-repairable. I had two of our kids with us... Elianna was the one with the most bruising because of the airbags. She and I have back pain and Michael thankfully had no physical harm that we can see or he has mentioned. He talks about it often and asks if we are going to get in an accident almost every time we get in a vehicle. 

When I went to the tow yard to get the car seats and anything we wanted out of the van, it felt so empty.... the airbags hanging down... I felt a little sad. It seemed silly because it is just a van. It has been our mode to go on adventures as well as get our family around day to day.  

As I tucked my kids in bed that night, Elizabeth asked me why the accident had to happen. My emotions surfaced, I reflected to my brother's accident years ago and I felt so much gratitude that my family and I were all home and in the big picture doing well. I am grateful we are alive and that this was not worse.

I am grateful for the kind man who quickly pulled over and came and offered comfort. I do not know his name but he offered his hand while I was on the phone with the 911 dispatcher. I am grateful my children are ok and that I am still able to take care of my family. I am grateful the people in the other car were kind and not injured. I am grateful for the kind EMT's and policemen who took care of all of us. I am grateful for Mr. Wallace, Mrs. Chatfield and their willingness to help and make sure my other two kids were safe and arrangements were in place for them. They brought Elizabeth over so she could see we were ok and then Mrs. Chatfield stayed by her on the sidewalk. Elizabeth put on a brave face and held it together. She is a tough little girl.  School had just got out and all the school buses passed by. I am so grateful Emylie did not see the accident and that her nurse knew to tell the bus driver to keep going so that Emylie would not see. When we got home and told Emylie she hugged me and cried. It was so tender to see her reaction and how grateful she was we were all ok.  I am grateful David was able to take my call and quickly leave work to come offer support and give us a ride home. I am grateful that both insurance companies have been kind and easy to work with. I am grateful my Dad let us borrow his car for a couple days until we got a rental and grateful to have a van for a rental car for a couple more days...

It has been awhile...

Time has obviously passed quickly since last posting. So much has changed!! A little over 4 years ago we were able to buy a home that functions well for our family. The builder had a feeling to build the home so it would be wheelchair accessible. When we came around to buy the home, he then realized why. There are no stairs going into the home, so Emylie can roll in and out as she pleases. We have loved the new area we live in and all the wonderful people we have the opportunity of knowing.

Just before moving out of my parents home, my mother was diagnosed with ALS. It was so hard moving away from her. We offered to stay with my parents and help my mom however she needed. My mom wouldn't have it. She reassured me that everything happens when it is supposed to and that she and my dad would be ok. My mother gracefully handled the challenge she was given and passed away not quit two years from being diagnosed, in August of 2014. I miss her every day. Living without my mother has been hard! She was my best friend and a source of strength and peace. I know she is still close by and helping my family and I, in many ways I am sure I don't even realize.

Our family grew when we had a little boy in 2013. Holy smokes having a son as a little side kick is awesome!! The girls all love him so much and for Emylie to become a big sister was pretty special. She wore her "Awesome Big Sister" shirt with a big grin and as often as she could.  He definitely has a his role in our family, and I can see the little piece of why each member of our family needed him to join our lives.

Emylie has been doing well, aside from some hiccups along the way. We moved into our home and within a few days Emylie was admitted to the hospital for about a week. It was her first Christmas in the hospital. She stayed out of the hospital until August 2015 when she seemed to be having neurological issues which was first thought to be results of a stroke. She had her shunt revised and we took her home to recover. Over the following months little odd things kept occurring but not enough at the same time or severe enough to warrant intervention, until the day after Christmas when I noticed her shunt was leaking. Super strange because her incision from August had healed and at first the neurosurgeon in the ER thought I was up in the night but then his findings confirmed my story and suspicions. She was immediately admitted with surgery the following morning to remove her shunt and place an EVD (External Ventricular Drain) for a couple weeks until the infection cleared and a new shunt could be placed. Thankfully, Emylie pulled through each of these experiences and fought back to get to where she was before entering the hospital and soaring higher as she continues to beat the odds.

Living with wheels...

Yesterday we went for a walk to the elementary school. Emylie drove her power chair and upon arriving we needed to visit the restroom for one of the other kids. At first Emylie and I waited in the hallway because I could tell the entrance to the restroom was crowded with 2 garbage cans. Within a few minutes she wanted to go in and wash her hands. I figured we might as well give it a try. She maneuvered well getting into the bathroom and to my surprise there was not an accessible sink. We managed and made it work but looking to the future I see where my little girl is going to run into obstacles.
It is okay that the world is not made for wheels because most have legs but it still tugs at my heart.
On the way home we stopped by a good friends house...to get close to the front door Emylie had to drive on their lawn. As we were walking and I was trying to foresee how to get her to the door and realized the home had stairs approaching the front door and stairs up to the door.  My thoughts went to the majority of homes she will not be able to access.
When we took her trick-or-treating last year there were homes she couldn't even get close to the front door or be scene by the person answering the door because of stairs. What is life like for adults in wheelchairs, or even older children who are unable to be carried. I think of the day when Emylie is older and we go to family events at other family members homes. How will she participate if she cannot get into the home with her wheelchair. It is a huge blessing she has enough mobility to crawl around when she is off the vent. And for now she can be carried. For that I am incredibly grateful because I know that gives her a little more freedom.
I was so naive before Emylie was born. The more she desires her independence and uses her power chair, the more I see how many obstacles the world will present her. A couple examples:
* walking to the neighbors chicken coop... there are large irrigation pipes along the route. Legs can step over them, a barricade for wheels.
* going for a walk in the winter months... the neighbor who doesn't shovel the walk or the sidewalk outlet that is blocked by snow. Legs can walk in the snow. Wheels spin and get stuck or if the snow is too tall it is a barricade.
* a part B to the walk in the winter... you are going along the sidewalk and there is dog poop on the sidewalk. Legs can step over them. Depending on the size and placement the wheels may have to turn around and go a different route. Or if you didn't see it and roll right through it then you have to clean the wheels before going back into your house.
* there is a toy in your way... if your in a chair with wheels and cannot reach the floor you have to depend on others to clear the way for you. Legs can bend to pick it up the toy or legs can go around it.
Be grateful for your legs and all the things you are able to do without a second thought. Life is still joyful living with wheels but it can be challenging.

I wish I was better at posting...It has been awhile since my last post. So long in fact that I had to try my password a few times before successfully logging in. I think of things daily that I want to post, simply because I am not good at keeping a journal and this has been a nice way to look back.

This year started off mellow with a peak in activity in February when Emylie was hospitalized. I really hope she never gets that sick again. An incredibly frightening few weeks. We are so grateful she pulled through with her remarkable fight. She is amazing and has a strong will. The doctors said it would take her weeks to months to recover. One doctor even said it would be mid-summer before she was back to herself. Thankfully Emylie went with the few week option. Perhaps her wish to see Mickey, Minnie and Donald Duck gave her some motivation too.

In April our family had the incredible opportunity to go with Emylie on her Make A Wish trip to Disney World in Florida. I did not think we would ever be able to take a trip away from home with Emylie, let alone travel across the country. This trip meant so much to each of us. It was therapeutic, relaxing, inspiring, quality family time, laughter, memories to last a lifetime. I cannot put it into words adequately. I am so grateful for all the people who made this possible, people we don't even know to the night nurse that we couldn't have done it without.

We came home from our trip and I felt like I needed a vacation again. A dear friend saw me a couple days after returning home and said, "The one who needs a vacation the most is the man that just returned from vacation." I couldn't agree more. The laundry and unpacking seemed like a mountain...it wasn't really bad but felt like it was. Next came the end of the school year prep.  Emylie was doing home school with her teacher once a week. Emylie looked forward to the visits with her teacher, especially when she brought paints or the hammer set she loved to play with at school.  

Summer has been great and passing way too quickly. We (perhaps just me) are not ready for school to start. I love having my kids’ home. This summer, Emylie has had multiple doctor visits both at Primary Children’s and Shriners Hospital. She has recovered well from her illnesses in February and since has had some ups and downs but overall is doing well. She started us on a new adventure in June when her oxygen saturations would dip lower than normal while sleeping. That and all that comes with it we are monitoring. I struggled for about a week and a half as we waited for results from her MRI. My mind jumps to the worst case scenario and as much as I believe in the Lord’s will it still can hurt tremendously. Thankfully the results did not confirm my worst case scenario and the plan is to continue to watch and wait.  There is still worry that goes along with it but much more manageable than the previous week and a half.

A friend of mine when asked how things are going will say, “It’s always an adventure.” She too has a child with special needs. This year I have come to understand that a little more. Emylie has calm moments and then the extreme opposite (i.e. February). I guess the extreme makes us appreciate the calm on a greater level.

So far this morning things are calm…

A Tuesday In May...

I know I haven’t been good at regularly updating the blog... I hope to do better...but for today...I just wanted to share some of my thoughts this afternoon.
A  few things uplifted my soul today… watching Emylie swing outside in her toddler swing and 1)feel confident enough to let go and stretch her arms and just enjoy the ride (she said she was flying) and 2) for her to have enough core strength to let go and keep her body stable in the swing.
Another moment was watching Emylie play with her Lightening McQueen car on the floor and scoot along as she tried to push the car and tow the toy telephone behind McQueen. And then about an hour later….walk back into the kitchen and see the car and phone lying on the floor and realize how hard Emylie had to work to get them there.
It is amazing to me how much joy there is to be had. I don’t think I always see it this way with my other kids. If they leave their toy out I don’t think what their body had to go through to get it there and smile. More often than not I catch myself thinking “ahhhh, I wish they would put their toys away when they are done.” 
Emylie teaches me. She helps me see life clearer.  I am incredibly blessed to be her mom!

Trach/Vent Clinic

We took Emylie to her trach/vent clinic today. At this clinic we see the pulmonologist, ENT, trach/vent care manager and special care pediatrician. They see her one at a time and then after clinic come together and collaborate on her care and then let us know... The pulmonologist, Dr Daftary thought Emylie's lungs sounded good and discussed procedures such as a bronchoscopy that may be beneficial.

I briefly mentioned in the last post the tissue I saw while doing her trach cares. Well, I sent pictures and discussed it with Chris Hartling and she said it was granulated tissue. They usually only do something if it causes pain, bleeds or interferes with a trach change. So as I do, I worried about changing her trach with that tissue which over the last week has grown. Thankfully Emylie's trach wasn't due to be changed until today...so I figured we would do it at clinic just in case. I was telling Chris and Dr Muntz how scared I was and that I would have dreams about her trach and my sweet husband was in the corner with a smile. He said, "you know they are going to have you change her trach!" And sure enough Dr Muntz said he wanted me to be the one to change it so I wouldn't worry. As much as I didn't want to be the one to do it, I DID. So, Dr Muntz, the ENT watched as I changed Emylie's trach so he could see what the granulated tissue looks like and so I wouldn't stress about changing her trach with the granulated tissue. I am happy to say that it went very well and I couldn't tell a difference. After we got the trach changed Dr Muntz put some silver nitrate on the granulated tissue and gave us a prescription for some cream to apply twice a day. Once the dr left the room Emylie said to me, "You did it all by yourself! Good job Mommy!" Isn't she so sweet! Dr Muntz also discussed getting rid of the binky and scheduling a swallow study. With the pediatrician we discussed some medical equipment such as a medical bed and a chair and she will get things started on both of those.

Overall I think they felt she was doing well especially considering where she was last month. They didn't order a chest xray because it takes 6-8 weeks for an xray to show the change after such an illness. 2 hours later we were on our way home and pleased with the overall appointment.

This last week Emylie has done WELL! She took herself off the vent for the first time and within minutes was crawling towards me in the laundry room. It was AWESOME to see her off the vent AND crawling with a big smile. She has gotten off the vent a couple other times, once she needed extra oxygen but the other times she has done fine without it. We also saw the plastic surgeon regarding the wound on her hand. He felt it was healing well and would probably take another month to continue healing.

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Tuesday March 6th

Emylie has been home over a week and has done really well. We kept her on 1 liter of oxygen the entire first week. She only needed 1 1/2 liters one night for a few hours. Other than that she did great. On Friday the 2nd I turned her oxygen down to 3/4 liter and then Saturday a 1/2 liter and Monday a 1/4 liter. The last three nights she needed up to a 1 liter but last night was able to stay on 1/4 liter while sleeping too. I tried to turn her oxygen off this morning but within a couple hours turned it back up to 1/16 liter which is very little and not concerning to me. For how sick she has been I think she has done wonderfully. Her lungs are sounding better each day and I would say are pretty close to baseline. This morning her right lower lobe sounds a little diminished over the left. I just finished her trach cares and am a little concerned about something I saw. Not sure if it is scare tissue or granulated tissue but trying not to freak out about it. I know Steve the respiratory therapist at Primary's mentioned something and I saw what he saw then but this is larger and different.
She has been off the Morphine and Adavan for a week. (oh, by the way, I am sorry I misspelled weak in my previous postings....I tried to catch myself each time but apparently missed---) Anyway. :) On Thursday last week she was incredibly silly! Her voice was loud and clear, she would make silly facial expressions and kept us laughing all day. We think she was probably "coming off" the medications. She has been happy....can I just say she is amazing...she can be happy through the stormiest of storms.
The wound on her right hand I think causes her the most discomfort. She doesn't like it to be touched and will cry through any cares we have to do for it and also randomly tells me it hurts her.
Her strength improves each day. She can pull herself up to the side of her bed now and even crawled a couple feet today. She hasn't been off of the vent yet but I feel she will get there soon.
I am very happy to report E2 only got better after the visit to the doctor last week. We kept her and Emylie away from each other for about 2 days and were so so happy nothing seemed to progress.
It seems we are all still trying to get back on schedule. Sleep still seems to be in short supply... one of these days I am sure we will feel "caught up". We are incredibly grateful to be home and have Emylie doing so well and E2 better too. Life is good! :)
I feel blessed to have such wonderful friends and family who give us support. Our good friend Carla came by today to talk Disney with us. Her handsome son went in August on his Wish Trip and she came to share tips. She was so sweet and brought a darling Minnie bag, binder with divers and notebook! I love to be organized and I felt so lucky to have a friend who cared so much! Thank you Carla!!
To all of our friends and family - THANK YOU for your support and love and prayers!