Amelia Wesley Allen

More on Disappointment

2011-07-01T10:25:00.000-07:00

We're home! That is the good news. We're sitting in the sun room of our new house. Listening to Crystal Davy's new EP, Immigrants and Strangers (you should all download it, it's available on ITunes!). Amelia is resting on her purple princess beanbag, she's pretty tired but is comfortable. For all of us, it seems to take about four days to get over the gloomies after being in the hospital. I think it is being confined to a small room, just staring at each other, watching monitors, and waiting, and waiting, and waiting. Being together helps. The MRI did not show the best case scenario. We will see Dr. P in a few weeks and talk more about things. Probably we will try the surgery again in a year after Amelia has grown a bit more. We are weighing the options.

I realized today, after talking to Crystal, why I/m so upset. I am really disappointed with God. Why didn't he just give us a break, haven't we gone through enough? Haven't we suffered well? Haven't we been faithful? The answer is..no. Jesus is the only one who suffered well and who is faithful. We try, we try REALLY, REALLY hard. We put on a happy face and pull up our bootstraps and try. But we can't do it without Christ. We will always come up short.

I have felt this disappointment before, I am sure you have too. We do our best, doesn't God owe us? Don't we deserve that new house, job, grade, friendship, parking spot, healthy child, healthy self. However deep or trivial our desires, we all think God owes us. I have come to realize (but often forget) that God has already given us everything. Unfortunately, "everything" doesn't always look like what we want. What did he give us? In short, he gave us his Son. We will either spend a lifetime trying to figure out what that means or trying to ignore it and be angry and disappointed with God. If we choose the second one we will try to make our own way with money and things and friends and whatever else makes us feel good. I believe most people don't fall neatly in one or the other category but vacillate between the two as we try to survive in this world.

What I said yesterday about trusting that this disappointment and suffering is not the end of the story and that I am trying to "see" life differently are still true. Today just need to be honest about where I am and I need to sit in the disappointment for a few days, weeks, how ever long it takes. I recognize that all of this might be difficult for some of you to stomach or it might just be confusing. If that is true I welcome your thoughts and would love to talk.

All is grace-
Jen

Here are some pictures from the sun room. Enjoy!
It is a room, that like my life is a work in progress.
Some of it is beautiful and some really needs work.
Try to have the eyes to see the beauty!
(or come over and help get some of the work done:))

Hydrangea Bush (one of my favorite flowers).
Weeds and dead grass.

Crazy, Wild Vines.

Potted flowers.
More weeds.

Flagstone and random tile floor.

Beautiful Amelia!

Sweet Feet.

All comfy cozy.

Done with MRI

2011-06-30T16:57:00.000-07:00

Amelia is done with the MRI. We had hopped to go home tonight but she is REALLY sleepy and hasn't eaten any food yet, so we will stay tonight. In the morning we should hear what the MRI showed.

Disappointment

2011-06-30T08:07:00.000-07:00

Family Picture at Amelia's Big Show!*

I am seriously grieving the fact that Amelia will not leave the hospital with a Baclofen pump. I had really hoped that this pump would give her some relief from her everyday suffering, would make her happier and more comfortable. Thankfully, our ultimate hope is not in a pump, it is in Jesus, the Strong, Sure One.

1 Peter says: Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a LIVING HOPE through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God's power are being guarded through faith for a salvation ready to be revealed in the last time. In THIS you rejoice. We REJOICE in Christ, through our suffering, following in his suffering.

We have had our "share"of suffering, according to most people's standards. I do not pretend to know why we suffer, there are many layers to suffering. I do know is painful and has brought a lot of grief. Real grief, the kind that I can't ignore or fix or buy my way out of. I have to sit in my grief and in it cling to the One who sits at the right hand of God. The one who wept when his friend Lazarus died, who begged for God to allow a different way for our salvation than his own terrible death. The One who knew the pain of people misunderstanding him and rejecting him, going hungry, being beaten, and dying the worst death imaginable. He KNOWS my pain.

So how do I go on? How do I wake up in the morning, get dressed and live life? Besides lots of strong coffee, I know that this suffering is not the end of the story. Amelia's best days were not the first four months of her life, when all seemed "normal". Her best days are yet to come, not through the latest medical innovations but through Christ. Her best day will be when she is dancing with Jesus.

I also try to see things. This is something that will have to be explained in more depth later (or you can read the book One Thousand Gifts), but basically I try to have child like vision. To look at the details, like colors, textures, the way grass blows in the wind, the smile or frown on a face. It sounds hokey but really looking at things and seeing them as gifts from God has helped me to not just go through the motions of life but to really live and thrive in this broken world.

Enough of the mini-sermon...Right now Amelia is resting and recovering. She was pretty uncomfortable last night and didn't go to sleep till around 2ish (I was so tired I don't really remember). She is pretty groggy, probably from the pain medicine. The MRI is scheduled for 3:30 this afternoon.

All is grace-
Jen

The Big Show Program

The Stage

Singing If all the Raindrops and It's Raining It's Pouring

Singing Dog In School

Can't remember what song this was.

Steve and Miles (he loves that winking big smile)!

The group: Bob and Kim Coleman, our family and Chrissy.

*Amelia's preschool teacher and paras put together a spring program every year they call The Big Show!

Out of Surgery

2011-06-29T14:41:00.001-07:00

Amelia is out of surgery and stable. Unfortunately they were not able to put the pump in. We are really disappointed, but are so glad that she is doing well.

Dr. Puccioni (the neurosurgeon) was not able to thread the catheter up Amelia's spine. He isn't sure exactly why (there are several possible answers) but he tried everything short of putting a large incision down her back. We hope to get an MRI of her spine tomorrow, then we will be able to see what the problem is and make a plan.

We have been praying and considering whether to do this surgery or not for a long time. It is really the only good option for controlling her muscle tightness at this point. Please pray that we would get answers with the MRI and that we would make the best decision for Amelia. We have always only wanted her to be happy and comfortable.

Here are some pictures from the American Cancer Society Cancer Walk in Valentine this spring. We did the survivor walk for the first time. It was really great to hear people's stories and to remember that Amelia is a SURVIVOR of a very aggressive and difficult to cure cancer.

Amelia's Surgery

2011-06-29T07:35:00.000-07:00

Amelia and Steve in the Aquarium at the Henry Doorly Zoo

Our little monkey Miles.

Good Morning. A handful of you know that Amelia is scheduled to have surgery today at 2:30p. For those who do not- Amelia will be getting a Baclofen pump* inserted into her abdomen. The pump will deliver the medication, Baclofen, to treat Amelia's tightness of muscles.

As always, there are risks with surgery-- potential infections, Amelia responding poorly to Anesthesia etc. We chose to do this surgery because it has high the potential to give Amelia a better quality of life. The neurosurgeon said that in the first few weeks most kids with Amelia's degree of tightness will be MUCH happier and sleep better. It will also make getting Amelia dressed and positioned easier for us. Many people who get the pump also have improved function and cognition. We hope and pray for this benefit also.

Please pray for no complications and that her post-op pain would be controlled well. Also pray for Miles who is with Jen's dad and step-mom in Valentine. He is having a great time and getting spoiled rotten.

Will update you when we are able. Surgery should last around an hour.

Steve and Jen

*The link above is a good general explanation of the pump. If you google "Baclofen pump" you will see pictures that look bad. The pump is a lot smaller but will be noticeable in Amelia's belly. Her Dr. said it is about the size of a hockey puck but thinner.

The Van!

2010-12-08T13:44:00.000-08:00

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

2010-10-26T19:32:00.001-07:00

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

2010-10-10T20:24:00.000-07:00

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

2010-10-04T20:20:00.000-07:00

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

2010-10-02T11:00:00.000-07:00

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

2010-09-30T14:06:00.000-07:00

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

2010-09-29T20:00:00.000-07:00

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

2010-09-20T15:22:00.000-07:00

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

2010-09-19T20:19:00.000-07:00

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

2010-09-18T19:03:00.000-07:00

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

2010-09-18T15:10:00.000-07:00

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

2010-09-14T12:27:00.001-07:00

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

2010-08-20T18:55:00.000-07:00

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

2010-08-16T11:41:00.000-07:00

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

2010-05-02T20:07:00.000-07:00

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

2010-02-04T13:00:00.000-08:00

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.

Speech

2009-11-09T18:54:00.000-08:00

I wanted to share some of the things that Amelia is doing in therapy. I will attempt highlight each of the three main therapies Amelia participates in (speech, physical therapy and occupational therapy). Let's start with SPEECH:

In speech, Amelia's therapist Carrie has been working diligently for the last year+ to develop a communication strategy. We all know that there is a lot going on in Amelia's head, the problem is accessing it. Things are limited because she has minimal movement in her body and she vocalizes very little. We started with using switches to play and learn cause and effect in St. Louis. We have tried different locations (hands and head) for Amelia to access the switches and have found that she is accurate with both! It is sort of an art though, due to her limited movement the switches have to be placed "just so" in order for her to be able to push them. We are working on ways to make it easier for anybody to set up the switches for her (this will be really important when she starts pre-school).

In this video Amelia is using the switch to activate the music box. The DynaVox sits in front of her (upper left of screen). The switch near her head (her left side) is what she uses to make choices with the DynaVox.

It is amazing how God has worked to bring the right people into our lives...Carrie shared with me last week that many Speech Therapists (SLP) don't get education in assistive technology (AT) in school like she did. She was fortunate to have a professor who is a leader in the field in AT. Other therapists have to get continuing education when they are out of school or just never learn about it. Carrie has worked very hard to give us the ability to hear Amelia's voice and her experience in AT has been invaluable. Several months ago Carrie started introducing Amelia to a DynaVox and Amelia has caught on and is showing a lot of progress with it. For now we only practice with the DynaVox at therapy (which we goto 2 times a week). However, we finally got all the paperwork in and are waiting for approval from insurance. The DynaVox is a touch screen computer that Amelia accesses with a switch. We started with one page that contained several options of toys that Amelia enjoys. On the screen is pictures of severla toys. One by one each is magnified and at the same time the computer says the name of the toy. Even though Amelia looks at the screen we think she mainly uses the auditory part to decide which toy she wants. When the toy that she wants to paly with comes up she hits her switch and the computer says "I want to play with the...." and we play with it. Amelia has graduated to two pages now, one with toys and one with several other messages like "Amelia" that says "HI, my name is Amelia" when she picks it. Another has my voice and Steves voice recorded so she can pick to hear us say hello. There is also an "all done" which she picks frequently when she is tired. We are very excited at the opportunity that this amazing device gives us all. In in we can scan pictures, have classmates record messages and so much more.

While we are waiting for our own DynaVox we are using a step-by-step at home. We use it to allow Amelia to say "hello" to visitors and to tell us "I love you". The latest thing we have started doing is putting it by her head when she is in bed so she can tell us if she needs us at nap time or in the middle of the night. She has caught on quickly and it is a HUGE relief to us knowing that Amelia can communicate with us when she needs to.

Amelia playing with her "Blues Clues" toy (right hand) and making choices with the DynaVox using the red switch at her head. You can hear the DynaVox's computerish voice talking. When we have our own we can have different more natural voices recorded and upload our own pictures.

Another aspect of Amelia's speech is how she talks with her eyes. One way she does it is we ask Amelia questions and when the answer is yes she looks at us and when it is no she looks away, she even says "i don't know" by looking in the middle. She also looks at two objects and makes choices. She picks out her clothing in this way. Amelia's physical therapist Chrissy can get her to answer probably 90% of the time. We get her to answer 50-60% of the time. As we get more consistent with asking and listening (which is a key component) she is trusting us more and answering more. She does show her stubborn three year old self frequently by protesting and not communicating or participating.

I hope this post helps to explain some of Amelia's progress. If you have any questions as always either post a comment or e-mail me a question. It is a lot of information and is difficult to explain in words so I am not sure I did a very thorough job.

Hope you are all well and enjoyed the Thanksgiving holiday. I know we did.

Jen

Three Years Old

2009-11-02T20:04:00.001-08:00

Monday was Amelia's third birthday. I have said it before but birthdays are a bitter-sweet thing for us. We are so amazed and in love with Amelia. She has been through and accomplished so much in her short life, she is my hero. Yet, is difficult not to think of what we lost in June 2007, all those hopes and dreams for our first born. We still have hope and we still dream, things are just different now...not the typical.

We celebrated with several smallish parties...Thursday in Valentine with my famliy. Friday in Ord with my family (yes, I have a lot of family). Sunday at church with our church family. Monday with a sweet friend, her grandparents and two amazing therapists at Madonna during therapy. Miles and I sang "Happy Birthday" about a million times and Amelia got lots of e-mails and phone calls too. Thanks to you all.

Party time in Valentine

Party time in Ord

She talks with her eyes...

2009-10-30T19:39:00.000-07:00

Amelia bundled after a bath

The main question we get from little kids about Amelia is "why doesn't she talk"? To which Steve and I usually reply "look at her eyes, she talks with her eyes". Sometimes we elaborate sometimes we don't (sorry to all you parents who have to explain what we mean). My friend Tara has two daughters who are very interested in Amelia. They talk to her every Sunday and pray for her faithfully. A few Sundays ago Tara sent me the following...

...after we got out of church to the car, Olivia and Ava asked about how Amelia "talks with her eyes" like Steve had told them she did. We talked about how you can show emotion and "words" through your eyes without using any verbal words at all. So, a few minutes later I asked Liv (who is 3 1/2) a question and she didn't answer...I asked her again, and she replied "I'm talking with my eyes, mom. And I said 'yes'." So then they were both really excited to try it and communicate with just their eyes (and lots of blinking : )), I just thought it was so sweet, the way that they were wanting to relate to Amelia and in a tiny, small way, understand her and know her just a little bit better. : ) It certainly makes me excited to have Amelia as part of our church and ministry. She can speak to others like none of the rest of us can....

We are all settling into life in Lincoln. We have great friends here, so many people who love and care for us. Amelia is almost three and time has healed some of our pain. Amelia brings so much joy to our lives. She makes us slow down and learn how to listen to her talk with her eyes. Most don't take the time to hear it, but those who do are blessed beyond belief.