8.27.12 Two Weeks At Home

New moves we have seen from Aimee since coming home two weeks ago (* you can see in the below video):

-Flaring her toes
-Stronger grip
-Lifting legs together with knees bent out
-Banging feet even louder on the floor
-Talking and crying more forcefully, which is a sign of increased lung capacity
-Sliding down bed during night and turning sideways
-Teeth came all the way through gums* (Not sure how this relates to it all, but her 1 & 2 year molars have been trying to come through her gums for over 2 years and have finally come all the way through over the past couple weeks)
-Expressed comfort at being held when crying
-Kicking one foot more individually*
-Moving hips while in chair
-Reaching out to sides to find person there
-Holding arms up in the air for longer periods of time and with more control*
-Pulling shoulders forward
-Increase in funny lip movements and kissy faces*
-Feeling her fingers individually with her other hand*
-Small crunches
-Wiggling torso*
-Continued progress with eye movement, more focus*
-Lots of energy, less sleepy periods*

(Please excuse the lack of skilled cinematography. 

Just focus on the cute girl, at least when the camera is focused enough that you can!)

We have been really encouraged to observe any small changes we can in Aimee while we are doing this therapy. The main purpose of this is to build hope in us and help us believe for the miraculous for Aimee.

We are in the process of scheduling our next two trips to California. In the mean time, we are taking Aimee to 2 therapy sessions every week in Bellevue. The lessons up here are $120 each, plus about 9 gallons of gas. Although we don't feel like we can put a price on these amazing changes we are seeing in Aimee, we are definitely praying for the funds to continue. Thank you to everyone who has been praying for us and supporting us during this adventure. As you can see, it means so much!

In other news, Ed was able to finish the handrail for our wheelchair ramp this weekend. Thank you to the anonymous family who donated the funds to put up this amazing ramp for Aimee. It looks wonderful!

Ed putting the finishing touches on the railing.

Aimee's first trip down her completed ramp.

Time to go get the kids ready for a trip to Seattle. Meeting with Pre-anesthesia today in preparation for her tear duct tube placement on September 12th. Simple procedure, but I never like putting her under. :(

PS. If you regularly follow our blog and would like to be updated when we post, you can subscribe by email. An email will go out to you on days that we post something new along with an excerpt from the post. I've moved the Follow By Email option up above the posts so that it is easier to find.

8.24.12 Thriller

A new first to share with you and yes, it's a thriller. Aimee had one of her extremely sad episodes tonight. She rarely cries (in fact the last time was on the first night of our trip down to San Rafael). When she does, she bawls with her lower lip way out and giant tears running down her sweet face. It is heartbreaking, because I don't ever know what is wrong, but also because there is nothing I can do to make her feel comforted. I hold her, sing to her, and sometimes just cry right along with her. She keeps on crying the same no matter what I do, even if I leave her alone. But tonight was different.

You wouldn't know it if you could see her as she lies now peacefully sleeping draped across my lap, but tonight Aimee was crying louder than I have heard before and just as randomly (went from happily talking and playing while eating dinner to sudden sobbing). When I picked her up, her crying continued. She started to calm down after some time, but when I tried to lay her down to change her into pajamas she sobbed again. I held her for 30-40 minutes and she finally fell asleep. We thought we'd try laying her in bed. Big mistake. She immediately started up again extremely loudly (sorry for waking you up Caleb!). I brought her back in to sit on my lap and after a few minutes, she peacefully fell asleep.

Okay, I realize this doesn't sound very thrilling to you, but for me this is mind blowingly huge. She is peacefully asleep on my lap. She calmed down when I held her and did not want to be put down. That has never happened before. She has never expressed a desire to be held, at all, EVER. This may sound like a typical evening with a child before bedtime. I am telling you though, this is the first time I have, in 3 1/2 years, ever felt that Aimee was expressing a preference to be with me instead of being set down. The first time I was a part of the comfort. I may just spend all night holding her here on the couch.

8.21.12 Backseat Conversations

My disappointment has ended. Not all of them yet unfortunately, but one in particular.
In moving on to using the wheelchair van, we had to move Caleb to the very back seat by himself while Aimee is seated in the middle row in her chair. I will always fondly remember how they held hands when they were in their car seats next to each other. I couldn't tell you for sure who would initiate it, but I think it was Aimee. She would put her hand over on her baby brother and he eventually started grabbing and holding onto it.
Today on our way down to Aimee's lesson, my heart finally found peace about removing this ability for them to hold hands. I thought they were both napping in the back, but a bit into the drive, they started "chatting" back and forth. And my disappointment was no more. I'm quite sure I just heard the first of many backseat conversations. A sibling connection in the car is still happening and the mother's heart in me rejoices.

It was a great delight to have family and friends comment on the changes they noticed in Aimee over this past weekend. Her visual and vocal responsiveness, as well as, increased energy have caught others' eyes also!

Far from seeing regression since we returned home, we have in fact seen an increase in her learning. She is beginning to respond to the adjustments we've made in our daily life at home too. I have made it my goal this past week to just take time throughout each day to completely focus on Aimee. Not to change what she is doing or to work with her, but just to join her in her current position/activity. We have been laying next to each other on the floor, making sounds, and looking at each other. I know, this is like Parenting 101, but it is actually really challenging for me to force myself to do this (perhaps a multi-tasker personality problem). With Caleb, I do better. It seems easier to focus all my attention on him when there is a quick response. With Aimee, I have to force myself to wait for her responses. They are slow to appear and if I allow my mind to move on from that place of complete attention on her, I will most likely miss them all together. However, we both enjoy the connection once I do slow down and focus on her.

My goal for this coming week is to add attentive touch to our daily routines. During all the interactions that require physical contact between us, like diaper changes, brushing hair, giving water, ect, I am going pay attention to touch. I will attempt to switch out of auto pilot mode and essentially see her with my hands, noting her responses. Creating a connection with her this way can help her to pay attention herself to touch and movement. My hope is that at the same time I am caring for her, I can be helping her brain to take in new information that it can use to grow.

8.16.12 A Touch

Aimee had her first official lesson in Bellevue this afternoon. Unfortunately due to some more car trouble (remember how I said our van loves Washington? well it doesn't love 100 degree weather in Washington, especially after someone parked in the full sun for a couple hours and then ran the ac through stop and go traffic. Yeah, that was me.) we didn't have a full opportunity to observe her this evening for any little changes. However, when we did finally get home this evening, I sat next to her while she was having her dinner bolus. She had been very excited and attentive in her lesson today. I was talking with her about it and she started reaching her hand out towards me. Now, she has been waving her hands out to the sides for some time, but this was persistent searching. She rubbed her hand on my arm, rested it on my shoulder for a couple minutes, and looked at me in the eye. Makes my heart warm just remembering it. She is learning how to initiate touch! Huge success!

Please pray for the provision to continue with these lessons. I am going to try to see if we can get insurance to reimburse some of the expense, but it is very unlikely that they will. We really are amazed at the results we are seeing in Aimee and are going to continue forward even though we can't yet see how it will come together. We are so thankful for each person who has gotten us this far. It is beautiful to me how this community of friends, family, and strangers has provided so much for Aimee. She is one loved sweetheart. I wish you could all see how lit up with joy and life she is!

8.15.12 The Van

Forgot to mention the wheelchair van in my post to you a bit ago. We are really, really blessed by our new van. It is amazing how much simpler it is to have Aimee right in her chair. Plus, a new benefit is that we have a great floor space for diaper changes. :) We did have a bit of a hiccup on our drive down to California. Apparently, this van likes Washington weather and did not appreciate temperatures over 100 degrees for extended driving. We were able to make it home fine, as we drove up the coast and only had a short drive in the higher temperatures. Honestly though, I even see this challenge as a blessing. It allowed us to spend the hot daytime hours with family members on the way down, which we thought we would have very little time to do. More good gifts!

8.15.12 The Next 3 Months

Thankful to be writing to you from home again. We got in Sunday night and feels great to be back. Of course, as you might remember from my last post, we are hoping to head back down to San Rafael in September and October for two more weeks of therapy. After seeing so much progress in Aimee's ability to learn, we feel that this is the next step for us. We don't know how it will work out with Ed's job or how we will raise the finances, but how can we say 'no' when she is blossoming with this new approach?

This week I have been working on communicating with the school district, therapists, and the center in California to work out all of the details. Overall, it is a big burden off of my shoulders to take a break from traditional therapies. We now have time for play and relationship. Except, I have gotten so used to incorporating exercises and practice into play, that I have forgotten how to just play with Aimee. What a pleasurable thing to relearn! I really didn't want to have to tell Aimee's Occupational Therapist that we are taking at least a 3 month break from her sessions. She has worked with Aimee since she was about 6 months old and has a great relationship with her. I know she is happy for Aimee, but... :( it is the one sad spot in a sea of happy.

Since last week's sessions, Aimee seems full of life. She is paying attention, vocal, and focused. She isn't napping as much during the day. She is energized. Her choices are not being constantly overridden by the need to do strenuous, scary, and overwhelming actions. She is enjoying her daily life more. There is such a deep respect for who she is in this method and I'm certain she feels it. It will be a long road to have enough progress that a stranger might see as success, but to us, the fact that she is not nervous or afraid, that she is validated and empowered to choose, is enough to show success.

So, what is different for us in daily life? Everything! No, not really, but it feels like it! The following are some changes we are implementing for the next 3 months:
-no other therapies, including all exercises and appointments for occupational, physical, speech, and vision
-no hearing aids (they have seen success with the brain overcoming hearing impairment)
-a new way to pick Aimee up
-letting her spend as much time as possible on the floor
-narrating for Aimee (we want her to participate as much as possible in activities, which at this point, simply means telling her what is going to happen and what is happening)
-giving her a huge amount of time to respond
-providing opportunities for her to perceive differences (touching hand to leg and hand to table, showing big contrasts)
-responding to sounds she makes, even imitating them, but not trying to make her talk

In order to build on Aimee's success and minimize regression, we are also planning to take her to a therapist that practices this method in Bellevue. Our first lesson there is tomorrow afternoon.

It was wonderful to take Aimee swimming in the salt water pool!

She loves playing with the iPad

Keeping a wary eye on her brother

More miracle stories to come!

8.10.12 Day 5

Day 5 observations:

-Pushing belly out
-Moving to the rhythm of songs by tapping foot and bobbing head
-Jumpy when touched, reacting to touch
-Excited during lesson, laughing and attentive
-Taking in more visual input, her eyes actually seem tired tonight
-Gripping for a longer period of time

What an amazing time! Aimee has responded and shown that her brain has the ability to learn. We feel that she has made more progress over the past 5 days than she had in the last year combined. It has been recommended that we take the next 3 months off from all other therapy and give this our full attention. It will be a long road and the steps may be small, but Aimee will make more progress!

We're currently processing how this will work for us as it would be mean 2 more trips down to California in the next couple months, as well as, about 10 lessons in Bellevue. A lot for us to discuss on the road home.

As I'm typing this I am watching Aimee playing with her cousin Alyssa. She has looked directly at her, made several sounds, held onto a little toy, and smiled. It has been wonderful to see Aimee build a relationship with Alyssa this week.

We are leaving in the morning to drive north toward Washington. I have many, many more things to tell you about what we have learned. This seems to be a turning point in our journey and from here the possibilities are wide open. We are filled with hope and believing for the miraculous.

8.9.12 Day 4

Day 4 observations:

-wiggling pelvis
-"talking" in longer sentences
-moving ribs and shoulders
-looking back over shoulder when on side
-changes in eye movement, less sporadic

Tomorrow is our final day of lessons on this trip. We are going to be discussing our plan going forward. Please pray for guidance. We want to help Aimee be the best Aimee she can be. We want to do what we can to help her shine in the gifts that she has been given, to reach her full potential. I really feel that the focus of this therapy closely aligns with these desires, rather than striving to make her "normal". So thankful to be here.

8.8.12 Day 3

Notable observations from day 3:

-Aimee is paying attention
-She fell off the bed for the first time last night (we're looking at this as a positive event, at least now that we know she is okay)
-a lot of finger play and extending fingers straight
-lifted one leg individually and bent it while keeping the other leg on floor
-kept eyes open more than closed. I took several photos of her and in almost all she had her eyes open. Major change.
-visually tracking therapist during lesson
-continued lightness, noted now in arms as well as whole body. Therapist described to us that the muscles have no abilities unless the brain tells them to act. Aimee's brain is realizing how to communicate with the muscles through her spine and she is beginning to hold herself.

8.7.12 Day 2

Today Aimee was especially sleepy, probably due to the amount of information she is taking in during the lessons. However, when awake, we noticed the following non-typical, exciting behaviors:
-wider eyes, more intentional looking
-touched iPad while watching fluidity application
-back did not collapse during time propped on elbows in therapy
-participated in rolling movement during therapy
-visually tracked red apple toy
-part of spine that yesterday therapist described as a block or unmapped portion, was showing progress at moving with the rest of her body
-used spine and shoulder to move arm, instead of just moving arm alone
-doing shoulder shrugs during dinner
-overall slightly less loose and feels a bit lighter when carrying, almost like she is partly holding her own body

We have been pleasantly surprised by the weather here. We came expecting mid to high 60's and it has been 20 degrees warmer. Perfect for taking the kids swimming in the salt water pool at the hotel. Today Aimee was more relaxed and enjoyed it. I will definitely post pictures when we get home!

8.6.12 Strangers and Family

This post coming to you from San Rafael, California courtesy of strangers and family, including the following:
-sweet chevron employee who allowed the kids, Alyssa, and I to take refuge from the heat in the little gas station corner
-compassionate man who helped Ed get the van off the side of the road to cool into the shade
-dear, amazing family who chauffeured us, sheltered us from heat, fed us, laughed with us, and worshipped with us Saturday and Sunday until it was cool enough to drive
-generous stranger friends who rescued us by loaning their car seats and their van
-AAA truck driver and his friend who not only towed the van, but looked it over
-Auto Zone employees who helped diagnose the car trouble
-Dear Caleb who showed patience well beyond his months
-Our lovely niece Alyssa who has been such an invaluable help with Caleb

We had car trouble on the way down and ended up only driving in the morning and late at night to avoid the high temperatures. I never realized what a challenge it would be to break down with a passenger in a chair. We made it into our hotel around 1:30 this morning and as quickly as possible got the kids in bed. Our first lesson was at 9 this morning and oh boy were we tired. Still are.

Aimee had two lessons today at the therapy center. After working with Aimee, the therapist described to us what he found. He said that when a baby is small and wiggly around their brain is actually mapping out their body and how it all connects to their spine and works together. In Aimee's case, there is a big section of her spine that has never been mapped, specifically from her pelvis up to her upper mid back. Through this week, their goal is to help her brain to discover it and how it functions with the rest of the body.

While we are here, we've been instructed to allow Aimee to play in her most comfortable position (on her back) as much as possible and to not do therapy exercises. We are simply to observe and note any differences in the way she moves or acts.

As of tonight, we have noticed the following:
-attentiveness
-extended cooing conversations (back and forth 4-5 times)
-lifting her hips off the floor while kicking legs
-turning head back and forth with less noticeable favoring of the left side

Excited to report more changes to you soon!

8.3.12 Every Good Gift

WARNING: This post contains an abundance of good news. If you don't enjoy good news, please do not continue to read. 

Saturday we took the kids to the Victory Car Show at our church. What a fun time! Aimee really enjoys the sound of motors, but it was a bit loud so we took her hearing aids out. Sadly, one of them ended up lost during the event. We have been looking all over the property and in the buildings with no luck and finally had to resign ourselves to getting a replacement. I called to speak with her audiologist and the aids are still under warranty!!! That means a FREE replacement. WOW. The only bummer is that we won't get the replacement until we return from our trip.

Sunday we went to look at a wheelchair van. Aimee is now close to 45 pounds and very tall for her age, especially for a disabled child. More problematic, as you can see in the below video, we have had a really hard time keeping Aimee well supported in her car seat, which would especially be a big challenge for her on a long road trip. Ed has been looking online at used vans for the last several weeks, but we just couldn't find anything reasonable in our area. He even started looking at vans for sale in Florida and California. We found some good deals, but they were still too expensive for us at around $25,000. We had funds remaining from last year's photo contest that we really felt like were meant to purchase us a van. So we were holding out hope to find something we could buy with that amount of money.

AAAHH, I am so excited to tell you about this! We found a van about an hour from our house for less than half the price of the other vehicles. It was a little older, so we weren't sure what kind of condition it would be in, but decided to go take a look at it. WOW. It is amazingly amazing. It has been extremely well kept up, has a power ramp, kneeling system, room for 5 able bodied persons, oh and so much more. Even silly little things that I wanted, like cruise control that has the decelerate option. Haha! Not important, but blesses me. We love it so much and God totally had already provided the money for it! Another set of wheels for Aimee miraculously provided.

While we were searching online, I was praying that we would have a positive connection with the sellers too. I just have to say I was so blessed last night when we went to pick it up. This couple has three kids, one of which is now 25 and in a care facility. He has never been diagnosed, but his symptoms sound almost identical to Aimee's. The wife felt like it was time to pass the van on to another family, but was wanting to find the right fit. We talked for quite some time about our experiences. I can only describe it as I felt like my heart was hydrated talking to her. We talked about the decision to have another child after the birth of our disabled children. We talked about school districts, hospitals, going places with our kids, and much more. She had so many identical feelings and experiences to me it was... all I can say is, it was a gift for me to have that time with her.

The only little sad part about this wonderful new van is that Aimee and Caleb won't be sitting next to each other anymore. I took a little video last night as they sat next to each other for maybe the last time. I especially love Aimee's sweet smile and eyebrow raises at her brother.

Look how well she is supported in her chair compared to the car seat.

She fits! :)

The good news isn't over yet. Aimee is in "summer school", which just means that she has therapists coming over to the house to work with her. I was really challenged with the Occupational Therapy situation last year. The school was trying to use a therapist over skype... oh boy. It was really unsuccessful. They were finally able to hire an on site therapist for this year and we have worked with her several times over this past couple weeks. She is positive, encouraging, relaxed, and informative. She is supportive of us checking into this other therapy and said that she wants what is best for Aimee. She even said that we get to decide how often to do exercises at home. A therapist that realizes that life isn't just about doing therapy!?! Almost feels unheard of, at least rare. I am quite sure I will have more good news to share about working with her over the coming year. 

Tomorrow we leave for San Rafael, California. I plan to post multiple updates while we are there so that you can share in our experiences. Please pray for us as we travel and participate in this therapy. Pray that:
-Aimee would be attentive and engaged during the therapy sessions.
-We would be safe on the road and that our new van would run efficiently.
-We would have grace on the journey, especially the kiddos.
-Aimee would be peaceful and comfortable, even without her hearing aids.
-Caleb would be patient and secure.
-We would have wisdom to know if we should continue to pursue this style of therapy at home after the trip.