The Van!

WE GOT THE VAN (A WHILE AGO)!

I have waited until I took and uploaded a video or at least a picture to post this one. Well, as you may have guessed that did not happen (yet). You will have to look past the two adorable kids playing in the leaves and see the only pictures we have of the new van. Having this van has been so AMAZING. Our backs and sanity are slowly recovering. Our quality of life has also improved. While it is still more work to get out I have taken the kids alone places (without dread or anguish). We go more places and do more things as a family. It is truly a blessing and a life giver. Thanks to everyone who made it possible. Oh and it is paid for in full! Plus we had money for some accessories and for a maintenance fund. WOW!

Give Amelia A Lift - Part 2

Well it has taken me a LONG time to get to part 2 of the GIVE AMELIA A LIFT update. I know that you were all sitting by your computers waiting for it. So wait no longer, read on....

As I said before the event was amazing. It far exceeded our expectation and was so much FUN. There were lots of people in attendance. Rob and Carla's house is quite large and it was busting at the seams. It was so great to see people from different eras of our lives come to support us. We were even blessed to have Amelia's teacher and speech therapist join us. To see pictures of some of the guests see Redeemer PCA's facebook page.


As you can see by the pictures the food was AMAZING! Kristin at The' Cup provided and set up all the food. It look almost too good to eat, but don't worry we ate it!! If you haven't eaten at The' Cup, you should. The coffee, tea, sweet and savory foods are something you shouldn't miss. Also Kristin makes the most amazing cakes.


What wine and cheese party would be complete without the wine! Thanks to the lovely people who served the wine. Pictured above is Keri.



Heidi Beran blessed us by playing the harp during the event. It added so much great atmosphere. THANKS HEIDI, and Liz who arranged it!!

Last but not least THANKS to our wonderful friends who planned and executed both the events. A huge thanks to the talent and creativity of Eleanor Creative who did all the communication pieces. Thanks to Andrew Weeks for planning and organizing the golf event. Thanks to Sommer (not pictured) who helped with thank yous. Be sure to check out the list of those who donated items and sponsored Give Amelia a Lift. One last special thanks to Grace Chapel and Chris Tran for coming up with the idea of a benefit, none of this would have happened without you. You suggested it at a time when we were especially discouraged and feeling down. THANKS!

Chelsey (organized the wine and cheese event) and Jenni (general helping and support)

Christine (overall organization owner of Eleanor Creative) and Tara (photographer and servant extraordinaire')

Christine and Carla (hosed the wine and cheese event)

P.S. Stay tuned for the third and final installment where you will find out what you are really wondering. How much money did we raise? and Were we able to purchase a van?

Give Amelia A Lift - Part 1

Golfers lined up for the shotgun start.

Amelia with Team Sumerlin.

The event was a HUGE success! Amelia had a wonderful time at Woodland Hills . We had 48 golfers participate and all involved had a treat time. The weather was beautiful, almost hot, and the scenery was amazing. What a beautiful fall day.

We were very impressed by the facilities at Woodland Hills. Everything was well organized and put together. I was most impressed by the GPS video screens on each of the carts. They had the hole sponsors and all the golf information up to the minute.

A picture of the GPS screen.

Several of us drove golf carts around the course, cheering on the golfers and snapping pictures. Amazingly Amelia loved the ride. It was bumpy but the breeze felt good in her face and I think the bouncing actually helped make her cough (which is good as she is still recovering from pneumonia).

Amelia is loving it!

Driving the cart.

Congratulating the winners!

Chrissy came to get Amelia and Miles to take them home for lunch and naps. As we were preparing her to leave she kept looking right, which means "no". Then when she got home she did not want to eat or nap, typical three year old behavior! I love it when she is sassy and shows her personality. She loved all the attention and knew that she was the guest of honor. She soaked up all of it!

We ended the afternoon with a prize ceremony and watching of football at the clubhouse. Thank you to all who participated. For more pictures see the Redeemer Church facebook page.

We're home

We were unexpectedly able to go home yesterday! Amelia's blood work was much improved and she was looking much better so they released us. We are tired and depeleated, but blessed and thankful for all you. Thanks to Julie for helping me make 18 calzones, Lauren and Kelsey for helping at the garage sale (also to my neighbor Theresa for all her work on the garage sale), Jamie for taking Steve on the adventure race which was his highlight for the weekend. Thanks also to Abigale and Ashley for faithfully praying and for lifting my spirits tonight, for Chelsey and the little Kirks for curing our boredom this morning, and for all the amazing people helping with Give Amelia a Lift benefit (Christine and Andrew and many more). Oh, and Sommer for the amazing worship selection and leading on Sundy night, it filled my cup. Oh, and Susan Meckel for delivering my fall food share, and Rhiannon for picking up the 18 calzones Julie and I made and for delivering the food tomorrow. I know I am forgetting....oh, Sarah Tlamka for the runzas you brought that we ate tonight:) Oh man, to my mom for her help around the house and with the garage sale and for Chris and Jenny for keeping Miles for the weekend. It is really dangerous to start and "thank you" list because I know I am forgetting someone or something. Really I just appreciate all of you praying for and caring about us...Amelia is awake and I am not sure why, so I will go now and see what is up and snuggle with her for a bit.

Hospital Day 3

Amelia is slowly getting better. Her white blood cells are down and fever is staying down and she has not needed any supplemental oxygen. They are pretty sure they have her on the correct antibiotic and will change her to an oral form soon. She will have to be on oral antibiotics for 2 weeks probably. She will have another chest x-ray and some additional blood work tomorrow and we will see where to go from there. Oh, she has needed IV fluids so she needs to tolerate enough food and water before we can go home. Maybe Sunday, more than likely it will be Monday that we are able to go home.

We are both going to nap right now, so this is "all she wrote".

Jen

Hospital Day 2

Amelia is stable and has been able to rest. Her fever is staying down without medication and she does not need oxygen. They have her on two antibiotics plus chest percussion. Really we are just waiting to see how the next few days go. We still don't know how long she will have to be on IV antibiotics.

What they think is that the infection never really went away and after we finished the oral antibiotics on Monday what was left in her body just took off, making her sicker than before.

Thanks for all the thoughts, prayers and well wishes. We appreciate them all and will keep you posted.

Jen

Amelia in the hospital again

Amelia developed a fever this afternoon and we took her to the ER. After running the full array of tests they are saying her pneumonia never went away and is now worse than before. She will probably have to stay in the hospital for a longer course of IV antibiotics.

She is stable and does not need oxygen. Just has a high fever (that is down with meds) and is restless, tired and irritated.

Pray for sleep (for both of us), healing and wisdom. I will keep you posted as I am able. Hopefully my mom will fix my laptop (that Miles broke) tomorrow and I will have a portable computer again (thanks Tredways for the use of your screen:)).

My mom will be here tomorrow then Miles will be at preschool on Friday but I may be calling those of you who said you could help with him.

Jen

Home

We were released from St. E's this morning. Amelia is doing well and settling into life back home. She took a much better nap without the distractions at the hospital and is playing with Miles and Steve right now. Pray for continued healing and recovery.

My friend Raynah came over and gave me at least an hour massage. She is a massage therapist and has a portable table. It was amazing. After the massage I got to take a long nap. What a life! I feel groggy but it is better being groggy than exhausted:)

Hospital-Day 2-3

Day 2 was pretty uneventful. Amelia improved a lot. She got off oxygen and kept her saturation above 95% most of the day. She continues to be on an IV, breathing treatments, oral steroids and antibiotics. Steve stayed with Amelia most of the day so I was able to be at home with Miles and get a bit of a nap. Terri took Miles for the evening so I could go to church then so Steve and I could spend some time together here at the hospital. The food here is not very good, thanks to the Mackerill and Adams families for a great lunch and dinner.

Last night was not so great. She kept her saturation up (except one time when she refused to cough and really needed to) but she would NOT sleep. I am not sure what the problem was, tummy, uncomfortable bed, who knows what but neither of us slept. Now she is sleeping in her wheel chair and I may try to get some zzz's too. Good luck to me with that here at the hospital:)

Will update when I hear from the doctor this morning. I am thinking we will have to stay another night but pray that we get to go home today.

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.