Hospital-Day 1:2

Riding a horse on Friday. Read below for the story.

Amelia is doing well. Oxygen saturation are up and she is on less oxygen (0.25 L/Min). Fever is down and she hasn't had tylenol in a while. She is having trouble getting to sleep because of the clicking sound the IV makes (she has supersonic hearing). Chrissy and I moved it as far away as possible but she is "all done" with the IV. Maybe soon I keep telling her.

On a good note we had a great time riding and hanging out with horses on Friday. I have been wanting to do horse therapy with Amelia for a while but with all that we have going on it just hasn't happened. Several weeks ago I was telling my friend Raynah about this desire and guess what, she just happens to ride horses at a friend's house near Lincoln. We finally got a time worked out and wow, it was so much fun!

When we arrived at the "ranch" Amelia was annoyed from the car ride and tired from therapy (probably she was starting to get sick too). I thought we would just stay for a bit then have to leave. But as soon as the horses sniffed her and she heard and felt them breathe she relaxed and loved it the entire time. The horses loved her too. I was a bit nervous because I am not really comfortable with riding horses but because she was loving it so much we decided to try riding too. We all did great (Amelia and I riding, Raynah leading and Jake (was that his name?) letting us ride. We are looking forward to another trip soon. Thanks Raynah for thinking of it, organizing and making it happen. You are awesome!

Hospital-Day 1

Just a cute picture for you to think about as you pray.

Amelia is in the hospital for pneumonia. She got sick on the 8th with a cold but seemed to be getting better last week, she went to school and therapy and was doing well. Last night she took a turn for the worse and developed a fever. She had a rough night and I took her in to see her pediatrician this morning. At the visit her oxygen saturation was low and they suspected pneumonia. She was stable enough that I was able to drive her to St. Elizabeth's (and not take an ambulance ride). When we got here they ran a bunch of tests, started an IV (the anesthesiologist got it on the first try!), IV fluids, antibiotics, breathing treatments, oxygen through her nose. Everything is coming back negative, we haven't talked to anyone about the x-rays but we are assuming it is pneumonia. She has a fever of 101 and is pretty irritable. She has cried 4 times since yesterday which is amazing and SO heartbreaking. If you don't know Amelia has cried maybe 10 times in the last three years (seriously, she never cries, unless she is hurting bad). So her crying is a big deal.

Miles has a cold so we are having to find help at home with him. Thanks to Chelsey Kelly and Leah for watching him today. Steve will be going home soon and I will spend the night here. We will see what tomorrow brings.

You can pray for peace and healing. When Amelia gets sick it sends me into a tizzy. Over the past three years I have learned to deal with the brain damage and as things seem to be going well I forget how fragile and at risk she is. Then when she is sick and sad I get depressed, worried and all around crazy. Steve keeps it together pretty well but I know it is hard on him too. Miles doesn't really know what is going on yet just that we are all on edge.

I am stealing the internet from somewhere (they don't have internet in the patient rooms, what century are they in?), but will try to update a couple of times a day. We don't know how long we will be here but at least a couple of days.

Thanks for your prayers,

Jen

Give Amelia A Lift

Our Goal
...It’s our hope and desire to help the Allen Family purchase a van with a wheelchair lift. As Ameila grows up, it has become more of a challenge to lift her in and out of a vehicle. A new wheelchair lift will make going places much easier for the Allens and for all the volunteers who help with Amelia.

How You Can Help
There are three ways you can particpate:
1. Sign up for the “Give Amelia a Lift - Golf Tournament”
2. Join us for the Wine and Cheese Event
3. Make a Financial Donation

Golf Tournament
When : Saturday, October 9th at 10:00 a.m.
Where: Woodland Hills Golf Course - Near Eagle, NE
Details: 4 person Scramble • $100 per person
($55.00 for the green fees are not tax deductible)
RSVP to Andrew at andrew@weekslawpractice.com
or call 402.310.6269. Please make checks payable to Redeemer Church with Amelia/Golf in the memo line. - 745 ‘D’ Street, Lincoln, NE 68502.
Sign-Up: The last day to sign up is Thursday, Sept. 30.

Wine and Cheese Event
When : Saturday, October 9th at 7:00 p.m.
Where: Rob and Carla Nixon’s Home - 3045 Van Dorn St. Lincoln, NE
The purpose of the Wine and Cheese Event is to raise money for the van, to learn more about families with disabilities, and how we can encourage and support them. There will be an opportunity to make a financial contribution at the event.

Financial Donations:
Please make all checks out to Redeemer Church with Amelia in the memo line. Checks can be mailed to Redeemer Church at 745 ‘D’ Street, Lincoln, NE 68502. Our goal is to raise $25,000 to cover the cost of the van and wheelchair lift.

You can also watch this short video made by David Houfek

http://www.youtube.com/watch?v=MtEFFp_ZUCE

A Tribute to Terri and Her Dad

Couldn't quite get Miles to cooperate with the sign

You may know Terri or you may not. Let me tell you, if you have met her you will not forget her. She is boistrous, funny, generous, and has a heart of gold. She came into our lives just over two years ago soon after we moved to Lincoln. We knew her and her family from church but didn't really know them well, and were surprised when she answered our plea for help with Amelia. Terri has become a source of laughter, joy and hope in our family. Amelia and Miles love her (and Gene and the kids..and the dogs..and the extended family).

Terri has consistently spent time with us on Wednesdays. She takes Amelia to therapy or watches Miles so I can take Amelia to therapy in peace. She does the dishes and folds laundry, plays with the kids so I can go shopping and takes Amelia swimming in the hot tub at her house. She is amazing.

Recently Terri, her dad Bumpo, and Steve installed a ramp for Amelia at our house. They worked in the heat for two days as a labor of love for our sweet girl. What an amazing act. We love you both.

Our beautiful and so helpful ramp!

Miles likes to use it as a ramp for his bike!

If you know Terri tell her how amazing she is. If you don't know her, thank God with us for her love and generosity.

Friends

Amelia chilaxin' in a hammock.
I will be buying one of these for our house ASAP. She LOVED it!

Miles also loved it.

Friendship is something that I often take for granted. Steve and I have AMAZING friends who love and support us (when I say "friends" I also mean family). Friendship is however something that has caused us much grief over the last six months. I should clarify, it is the lack of meaningful friendships for Amelia that has caused the grief. Let me explain...

If you have a child or know someone that is difficult or different or in someway has a hard time making or maintaining friendships you will understand our pain. We all want to have a friend, someone to be there for us. To laugh with, to cry with, to be goofy around. The fact is we NEED friends too.

There are A LOT of things that people have to overcome or be comfortable with when being a friend to Amelia. People have a hard time knowing how to communicate with Amelia and how she communicates back. Her wheel chair is intimidating. The stiffness of her arms and legs, the fact that she only moves her head and eyes well, the fact that she drools, she has seizures, she doesn't talk....really the list could go on but you get the idea. All of these things are a potential roadblock to friendships and meaningful interaction. What I see when I look at Amelia is not all the differences above but, someone made in the image of God. Someone dearly loved by Him and someone with great value and dignity. I just want others to see the same thing and get excited about it like I do.

Steve and I have been mad and sad for a while. We prayed and sought the LORD in our grief. Finally we are talking about it, with Amelia's therapists, our friends, their kids, our pastor and really anybody who will listen. What we found instead of the loneliness and isolation that we felt and feared was open arms and people who are willing to do the hard work of getting to know Amelia. It energizes me and gives me hope. I am even able to write something on this blog:)

The pictures above are from today as we played with friends. Sadly I don't have any pictures of it (only two moms with six kids didn't leave much time or ability for pictures) but Amani and Ellie were awesome with Amelia. They took turns playing charades. They asked Amelia what she wanted to be (she answered very obviously..she wanted to be a train and a princess among other things) then helped her act it out. Amelia was so happy she smiled the whole time, didn't want to leave and smiled the whole way home. It was a HUGE blessing to my heart. The girls learned that Amelia CAN communicate, that she has an opinion and that she likes to have fun like they do.

Are we ready for the hard work this will entail? Probably not, but God always give us the strength to preserve, thrive and find real joy in the pain and difficulty that having a child with special needs brings. I welcome you on the journey with us and welcome ANY questions.

Spring

Here are some pictures of our spring thus far. We have had a great time exploring and just spending time outside.

Some of the items we found in our back yard during a nature walk.

Amelia loved getting her hands dirty.

Beautiful girl with my beautiful Lilacs that finally bloomed this year.

Miles loves to help with the garden. So far he has only dug up one cucumber plant. He's not so much helping in this picture but I had to put one in of the cute cloth diaper butt.

Amelia enjoying the sights, sounds and smells of spring.

Preschool

Amelia started preschool at Clinton Elementary. It is a big old school on the north side of Lincoln. Our home school does not have an Early Childhood Special Education (ECSE) classroom so we were placed at Clinton (the only opening in the morning). Thankfully we all love it. The teacher is wonderful, the paras are great and the therapists are too. Amelia's team consists of a special ed teacher, 2 para-educators, 1 speech therapist, 1 occupational therapist, 1 physical therapist, 1 technology specialist and 1 nurse. Quite a team! Everyone is taking a few weeks to get to know Amelia but things are going great so far.


Every day Amelia comes home so happy and ready to "tell" us about her day. Her favorite part so far is singing. She has helped pick out the song the last few days. She likes Wheels on the Bus best, what can I say, we have been singing that song for a long time. I remember not knowing what to do with Amelia when we first got out of the hospital. All of the usual kid stuff was gone I couldn't see past the meds, tube feeding and doctors apts. Jo Russel Brown from the Delta Gamma Center in St. Louis helped me to see that I could do some "normal" things with Amelia, like singing songs. Amelia has a connection with others through singing and music.

We take Amelia to school in the morning and she rides the bus home. The HUGE yellow bus backed down our street for the first time last week. I was so scared for Amelia (and me) about the bus ride, but she did great.

Miles and I are enjoying some mornings away from therapy too, we were able to go to Mom 2 Mom today and enjoyed some time with friends. We couldn't be happier with our new routine.