10.27.12 The Sequel: Day 5

Last day of lessons today. Aimee was eager in both sessions, soaking in the new information. We have been really impressed with the overall progress she has shown. It is exciting to see the pieces if information that she has gathered start to fit together.

One primary focus that they worked on with her all week was planting her feet and hands. At the beginning of the week she didn't have any concept of what this meant. Today, when they had her lying on her back, she kept her feet planted and her knees up straight, which shows that she is learning how her legs are aligned and connected with her lower back. An exciting step towards learning to stand and walk. Her toes that were damaged from club foot treatment as a baby have also just today shown signs of straightening out.

Aside from this excitement, the biggest changes we saw this week were:
-looking at people and objects from a greater distance
-more sounds, longer sentences, more talking in general
-quicker response to comforting
-more emotions, especially during moments of frustration or discomfort
-learning to communicate humor
-increase in ranges of motion in arms and legs
-holding her hands and feet in new positions
-her back is showing signs of straightening
-more pelvic movement
-overall sensitivity to touch, feeling, and visual stimulus (like jumping when someone suddenly walks by in her line of vision or when she is touched without warning)
-muscle tenderness in her arms and hips, like she has used muscles that were not used this way before

Thank you to each of you who have supported us in this sequel trip. We didn't have the ability to do it on our own. We are incredibly grateful for the prayers and funds. Each of these trips have brought a wealth of new learning for Aimee. She is being set up to communicate and grow. She is learning to be the Aimee she was created to be. She is our pure gold girl.

As her special prize for this week we got her this sweet little ring. She seems really impressed with it. :)

10.25.12 The Sequel: Day 4

Tough day today. Aimee was exhausted and whiney. She is still on minimal food and water, but thankfully keeping it all. She slept most of the day, even during her lessons. She is tired from the long week and all the information she has taken in, but I imagine she is also lacking energy due to low calorie intake.

The first lesson was especially interesting today. The specialist really pushed Aimee. She was almost a little rough from my perspective. Partly I think she was trying to wake her up, but also she was really looking for Aimee to make good progress this week. We want good progress too, but not at the cost of overwhelming her. It seems like a delicate balance.

All that being said, we did see a few interesting motions today:
-in lesson, half rolling to side. Therapist was rolling her top half and she rolled the bottom half. Therapist rolled her bottom half and Aimee rolled the top.
-participated a little bit in the process of pushing herself up on her hands.
-she was very jumpy and jerky in her second lesson. Almost like she was a little sore from the morning.
-putting one foot over on the other knee and then lifting both together.

Tomorrow is our last day of lessons for the week. I am praying for Aimee tonight. I don't understand everything that is going on with her currently, but I am hoping that she will fully benefit and utilize the information that her brain gathers in tomorrow's lessons. I am praying for wisdom to know what the balance is between spurring her on and pushing too hard. I am asking for clear direction on where to go from here.

10.24.12 The Sequel: Day 3

One big highlight of today with Aimee was in her first appointment. The specialist commented to the others in the room, "This girl has potential." Of course, I already know that Aimee is bright and can learn, but it was rewarding to hear a stranger recognize it. With the right tools, Aimee will make progress.

Other fun things from today:
-Humor. Aimee has been showing her sense of humor during the sessions, today especially, and has the whole room laughing along with her.
-therapist noticed that Aimee knows how to move her tongue in ways that would enable her to make 't', 'd', & 'n' sounds.
-when leaning forward over a rounded cushion, Aimee put both her hands flat against the table in front of her
-pulling both shoulders back and sticking out her chest
-turning head back and forth from left to right a lot, as well as, up
-vision was really clear today, even seemed like maybe she could see a little farther away
-talking, so much talking!
-lifting both legs straight off the floor
-holding her left hand against her chest while in chair

Aimee also enjoyed going to the mall today and feeling different textures. As you can see, she fits right in here.

10.23.12 The Sequel: Day 2

Aimee was very sleepy today and even when awake, she has been very calm. She had her first lesson this morning with the specialist that works with CP kids. Both her instructor from Bellevue and her other instructor down here sat in on the lesson. Made for a crowded room!

Today we noticed Aimee:
-strongly flexing her hands and fingers
-thrusting her hips and arching her back an inch or more off of the ground
-interlocking fingers when holding hands
-breathing more relaxed
-kicking left leg very fast and high

We were finally able to have a day with no lost food or fluids, however, in order to attain that feat, we only gave her 1/3 of her typical food and less than 1/4 of her water at greatly reduced rates. Tomorrow I am hoping to increase her water intake.

10.22.12 San Rafael, The Sequel: Day 1

Today started off on the wrong foot. You know those days where you lose the keys, the kids are crying, and you hit more than anticipated traffic? Yep, all those things happened this morning. And consequently, we missed the entire first lesson. After all it took to get there I was practically in tears to miss it. I couldn't believe that we had done so much to get here and 1/10th of it, Aimee didn't even get to attend.

In the end, it worked out. At the second lesson, that practitioner mentioned that he had more time in the afternoon if we would like to come back later for a other lesson with him. Yes! It worked for the best. Aimee cried the whole drive this morning and most likely wouldn't have benefited from an early lesson. This allowed her to have a nap in the morning and begin her lessons refreshed and ready to learn.

We are still having quite a bit of trouble with reflux, gagging, and keeping Aimee hydrated. Despite these challenges, she has been very active since her lessons this afternoon. She is really talkative and emotional. She has been laughing and dancing to music.

The couple fun things that we noticed tonight:
-Ed and I took her with us grocery shopping and she pushed an item off of the shelf. We were pretty much delighted, but, regardless, we didn't buy her the container of beans and beef that she chose. :)
-while holding her this evening, Aimee was studying my face/hair. She was also looking and leaning towards the right, whereas she typically goes left.
-while playing she repeatedly pulled her left shoulder back so that her shoulder blade stuck out.
-we noticed an increase in back movement, wiggling and arching.
-when she started to cry this evening, she was IMMEDIATELY comforted by me picking her up.

We are excited for a full day of lessons tomorrow. Please pray that we would have wisdom to know how to keep Aimee from losing fluids and food while also allowing her to fully participate in the learning process.

10.21.12 Trip Update

Thank you everyone for praying for Aimee's health this past couple days. Her fever is gone and she has been in great moods during the whole trip. Unfortunately, she lost her dinner again last night and both her water boluses today. We haven't even attempted dinner. It seems to us like she is having a lot of reflux and then gagging on it. She was also gagging more than normal during her most recent cold. She doesn't currently seem sick in any other way. Really sad that she is having such difficulty keeping things down. We have done our best with the suction machine, but it is challenging while driving. Especially challenging as she has vomited all over her chair, blanket, multiple outfits (hers and mine), and a bit on the van. Tricky business to sufficiently clean these things while on the road!

Our travel has been really smooth and uneventful (above events aside). We made it to Vacaville tonight and will take Aimee to her first lesson in San Rafael in the morning. Looking forward to posting about day 1 tomorrow night.

10.19.12 No Sickness Allowed

If you happen to read this post tonight or tomorrow, please pray for Aimee. We are hoping to begin our journey to San Rafael in the morning, but Aimee is currently really upset, running a low grade fever, and lost dinner. I cannot believe she could possibly be getting sick again for the 4th time in the last couple months. I am really praying for her immune system to be strong and for real rest for her tonight. Thank you dear friends!

10.16.12 Strides In Sadness

Not long after putting Aimee to bed on Saturday night, she started crying. She had managed to get her comforter completely up covering her head. I think she was scared. For the next couple hours, she sobbed. I comforted her and tried putting her down in her own bed again several times. Even when I was laying down with her, she seemed to be afraid to be there. I brought her into our bed and within a few minutes she was sound asleep between Ed and I.

There is progress here that excites me. She was associating her sadness with the event that caused it and the place that it happened in too. Also, she was comforted by being in bed with us... Just a taste of what it would be like to have Aimee as a typical 3 year old scared to be in her own bed and wanting to sleep with her parents.

The next night, when she was awakened by Caleb's intent cries, she started sympathetically crying too. This would be typical infant behavior, but is again new territory for Aimee.

Not that I ever, ever want Aimee to have cause to cry. In fact, it always hurts my heart.Yet, I love that she has begun to connect a couple of emotional dots together. She is showing basic understanding of comfort, sadness, and even concern for her brother.

One other neat new action. She has several times, over this past week, held an object to her chest. She had started grasping and her grip has gotten stronger, but this is more of a full arm hug, typically on a stuffed animal.

We are preparing to leave this Saturday morning for another trip down to California. We are very excited to see what is in store for Aimee on this next trip.

Reporting to you next time from San Rafael!

10.11.12 Back to Health

Thank you to everyone who has been praying for Aimee this past two weeks. She had a really tough time. The sickness dragged on for so long I was starting to forget what typical Aimee is like. I am excited to report that she has been improving the last few days. Last night she didn't wake up choking at all. Today she was energetic and almost back to her normal self. Now we just need to get the weight back on her and we'll be ready for another trip to San Rafael next weekend. Prayers for a strong immune system would be much appreciated!

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