I have spent several days stewing over a recent phone call I received from our feeding and respiratory home care company. The call forced me to again face the struggle between doing our best and doing the least. We can struggle to provide care for our daughter, asking for help when we cannot do it on our own or we can structure our income, cancel our insurance to have the most care provided possible. It sounds so obvious when I say it out loud. Clearly one would choose to be honest, to work hard, and to admit help is needed when it is too much. Right? Oddly though, that very help is sometimes only obtainable if we are unwilling to provide for ourselves.
Many, many families must face this same challenge with their disabled kids. For our family there have been two recent examples of this. First, we have now just managed to purchase private health insurance and because of this we are no longer eligible to receive financial assistance for home care supplies. Even though our insurance plan is high deductible and will not cover the supplies itself. In this odd situation, we find that we would receive more help, in fact the supplies would be fully covered, if we cancelled insurance. It would not only save us the cost of supplies (through home care the cost is nearly 3,000 per month), we would also be saved the insurance premium cost.
The other situation has been in regards to disability insurance/SSI. In order to receive ANY assistance with medical, therapy, feeding, diapering, travel, ect costs for Aimee, we would need to structure our income. Essentially chose to make as little as possible and live off of government assistance in all ways.
As I prepared to write an embittered post to you about "the system" that teaches us to connive for the most free provisions possible, another family gave us a cash gift. Our problems didn't instantaneously disappear, but the gift was like a token that made me realize there is a third choice. We don't have to strive to do as much as possible wearing ourselves thin in our struggle. We don't have to give in to the temptation to take as much assistance as we can possibly finagle to get. We instead can choose to do our part in work, to provide what we can, to receive gifts from strangers and friends (really from Heaven we know), and watch Aimee's needs continue to be miraculously met every day.
It may not sound much different from the outside, but the attitude of my heart makes it another choice altogether. Instead of crying (literally) and stressing about how we can make it all happen, we can choose to say, "Jesus, here is our need." How will He provide? Maybe He will use financial aid, maybe the bills will be paid miraculously by an unknown source, maybe He will show us another way to get supplies, maybe He will give Ed an extra job to make money...He has done all these things in the past. Whatever way He chooses this time, we can choose to look in His wonderful face and have joy in the knowledge that He will provide.
“That is why I tell you not to worry about everyday life—whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are? Can all your worries add a single moment to your life?
“And why worry about your clothing? Look at the lilies of the field and how they grow. They don’t work or make their clothing, yet Solomon in all his glory was not dressed as beautifully as they are. And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith?
“So don’t worry about these things, saying, ‘What will we eat? What will we drink? What will we wear?’ These things dominate the thoughts of unbelievers, but your heavenly Father already knows all your needs. Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.
“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today. (Matthew 6:25-34 NLT)
In other news, we have been very busy since we last spoke. Here is a little rundown of some activities:
-Audiology-
Caleb had another hearing exam to help us determine if Aimee's hearing impairment is linked to her overall condition or if it is a separate genetic issue. We were able to test 2 more pitches and he passed both well.
Aimee had her hearing aids fixed and is showing definite responsiveness in using them during her ABM therapy sessions.
-GI-
Aimee has continued to have trouble with reflux, so we changed her to a more serious medication. So far, we are seeing a lot of improvement.
The last several months we have struggled to get rid of a rash that would periodically surround her button and spread over her chest. The doctor is trying to treat it with anti-yeast cream to see if this will deter the spread.
-Nutrition-
Due to the problems with keeping meals down, Aimee's weight had dropped several pounds. Thankfully the nutritionist was very willing to wait and see how she does with reflux medications and did not push us to make any diet changes. We have been a little concerned that maybe she had developed an allergy to the formula that we occasionally use and that it was causing the reflux. The doctors felt that due to the significant cost increase of hypoallergenic formulas, it would be better to try eliminating trigger foods in our blended diet first and then make formula changes if necessary.
-School District-
We are beginning the process of rewriting Aimee's next IEP for the coming year.
-Opthalmology-
Aimee's post-op with opthalmology was last week and we finally got the stints removed from her tear ducts. Aimee has been so excited and happy since they removed the stints. Must have been so irritating for her. After reviewing symptoms and ct scans with the doctor though, it was determined that the procedure was a failure. The actual problem appears to be that the bottom openings of the ducts, which should allow drainage through the nostrils, are just barely open. She has very narrow nasal passages, partly due to the way her skull is growing disproportionately. We are first going to try using steroid sprays in her nostrils to see if we can reduce the size of surrounding tissues to relieve pressure on the openings. If after two months we don't feel this was successful, she will have tissue surgically removed and then they will inject steroids directing on site. All for those tiny little tear ducts!
-ABM-
The therapist in Bellevue has begun to incorporate some speech therapy into Aimee's lessons, which at this point looks like playing with her throat and tongue. We are excited to see her learn more in this area.
12.3.12 Chocolate Cake Soup
The questions that people ask about Aimee when we are out in public are pretty few. Most people tend to look away or try to watch out of the corner of their eye. You can always tell when someone has had a relationship with a special needs person, because they aren't embarrassed to look me in the eye.
Kids on the other hand ask all kinds of questions or just plain stare. They ask why we haven't taught her to talk or walk. They wonder why she drools or rubs her hands together. They are usually very curious about the hearing aids. I love these kids. I love their blunt wonderings and curiosity. It isn't awkward to be asked questions. Honestly I feel like Aimee is more valued when others are curious then when they purposefully don't look.
My favorite though are the ones who treat Aimee like another kid. A girl at church recently asked if Aimee was allowed to go to sleepovers. My little 18 month old nephew just goes to her and tickles her feet. Our 4 year old niece asks her to play games and pushes Aimee in her chair down the hallway to show off her bedroom. The kids at school bring her toys to play with or help her do puzzles. And last night, we were all about to have dessert, my nephew asked if we could make chocolate cake soup for Aimee to eat. These little gestures make my heart so glad, so thankful for the simple view that Aimee is just another kid.
After school today we took Aimee down children's to meet with orthopedics. She had a spinal x-ray to see how her scoliosis is progressing. She currently has a 26% curve in her spine (see below picture of the x-ray). There isn't much they can do to correct or even to help prevent scoliosis from worsening. We will just continue to monitor it and hope that it never gets to the point of surgical intervention (typically considered around 50%).
We also met with the doctor who corrected her club feet. He is still very pleased with how they look and sees no signs of regression.
Kids on the other hand ask all kinds of questions or just plain stare. They ask why we haven't taught her to talk or walk. They wonder why she drools or rubs her hands together. They are usually very curious about the hearing aids. I love these kids. I love their blunt wonderings and curiosity. It isn't awkward to be asked questions. Honestly I feel like Aimee is more valued when others are curious then when they purposefully don't look.
My favorite though are the ones who treat Aimee like another kid. A girl at church recently asked if Aimee was allowed to go to sleepovers. My little 18 month old nephew just goes to her and tickles her feet. Our 4 year old niece asks her to play games and pushes Aimee in her chair down the hallway to show off her bedroom. The kids at school bring her toys to play with or help her do puzzles. And last night, we were all about to have dessert, my nephew asked if we could make chocolate cake soup for Aimee to eat. These little gestures make my heart so glad, so thankful for the simple view that Aimee is just another kid.
After school today we took Aimee down children's to meet with orthopedics. She had a spinal x-ray to see how her scoliosis is progressing. She currently has a 26% curve in her spine (see below picture of the x-ray). There isn't much they can do to correct or even to help prevent scoliosis from worsening. We will just continue to monitor it and hope that it never gets to the point of surgical intervention (typically considered around 50%).
We also met with the doctor who corrected her club feet. He is still very pleased with how they look and sees no signs of regression.
11.30.12 Discovering Aimee
Very happy to report that as of Tuesday evening sick, disconnected, and miserable Aimee has disappeared and been replaced by her true, joyful, and lively self. We are delighted to have her and her laughter back. Praying for a long stay in healthy land.
I was finally able to take her in for more lessons yesterday. She did amazing. She was engaged and really listening throughout. PLUS, she did two new things right in the middle of the lessons! She moved her right leg by itself. She had started moving her left leg independently in the last couple months, but her right side has a hard time catching up. It was exciting to see her do it 5-6 times during the lesson. The most beautiful thing to see though was when she actually watched her hand move as the therapist was raising her arm up. I've never, ever seen her actually see a part of her own body before. It was beyond amazing!
Watching these tiny discoveries happen, I realize how many bits of information that we just know about ourselves. I am understanding more and more how little Aimee actually does know about herself, even just about her own body. Recently as we were changing her clothes Aimee started to feel the skin of her chest for the first time. How beautiful to see her gather a new piece of information and find out a teensy part of who she is.
Ps. I've added a Gift Ideas page up on the top menu. Useful ideas for Aimee or other sweethearts with similar disabilities.
Another fun new movement in her chair:
I was finally able to take her in for more lessons yesterday. She did amazing. She was engaged and really listening throughout. PLUS, she did two new things right in the middle of the lessons! She moved her right leg by itself. She had started moving her left leg independently in the last couple months, but her right side has a hard time catching up. It was exciting to see her do it 5-6 times during the lesson. The most beautiful thing to see though was when she actually watched her hand move as the therapist was raising her arm up. I've never, ever seen her actually see a part of her own body before. It was beyond amazing!
Watching these tiny discoveries happen, I realize how many bits of information that we just know about ourselves. I am understanding more and more how little Aimee actually does know about herself, even just about her own body. Recently as we were changing her clothes Aimee started to feel the skin of her chest for the first time. How beautiful to see her gather a new piece of information and find out a teensy part of who she is.
Ps. I've added a Gift Ideas page up on the top menu. Useful ideas for Aimee or other sweethearts with similar disabilities.
Another fun new movement in her chair:
11.21.12 Sharing Aimee
Perhaps you wonder why I choose to share intimate details about Aimee's life in this public way. I'm sure some may find it a bit inappropriate. Although we were generally private about our personal life, Aimee has changed that. Our lives have so drastically altered since Aimee was born. I do not merely mean our daily routines. I mean our very life, our being, our hope, our perspective on being a human on this planet, our view towards tomorrow, our joy in simplicity. Yet, I believe, Aimee is not here to only change her parents' lives. In my opinion, Aimee is here for you too. I am much less afraid of the person reading this who might misuse the information, than I am of not doing my part to allow Aimee's light to shine.
Sure, you may not need to know about her appointments or her little struggles. I partly include those for my own record keeping and partly for anyone who carries her in their heart. Yet, not many of you will be able to take time to just sit next to Aimee and learn her language. I am still in 'Aimee 101' myself. So in this intimate, detailed, but distant way, I am sharing Aimee with you.
Below are a few little examples of new things Aimee is learning since her recent trip. It has been such a joy to have so many friends and family comment on how changed Aimee is. People who don't see her often are surprised by her eyesight, her energy, and her awareness. I wish I could have her give you a virtual hand squeeze so you could also be amazed at her strength.
A few prayer requests:
-Aimee is sick again. I have lost count of how many cough/colds she has had in the past couple of months. Nothing makes me want to take up swearing more than Aimee getting sick again. As you know, a simple cold is so challenging for her (and me).
-She is still having difficulty with reflux and consequently vomiting. We have requested a change in her medication dose and are hopeful that will do the trick. Should begin this increase this weekend.
-This next couple weeks are jammed with check up appointments at the hospital. Health for Aimee, energy for me, and patience for Caleb!
Sure, you may not need to know about her appointments or her little struggles. I partly include those for my own record keeping and partly for anyone who carries her in their heart. Yet, not many of you will be able to take time to just sit next to Aimee and learn her language. I am still in 'Aimee 101' myself. So in this intimate, detailed, but distant way, I am sharing Aimee with you.
Below are a few little examples of new things Aimee is learning since her recent trip. It has been such a joy to have so many friends and family comment on how changed Aimee is. People who don't see her often are surprised by her eyesight, her energy, and her awareness. I wish I could have her give you a virtual hand squeeze so you could also be amazed at her strength.
 |
| Aimee with her legs crossed over the pommel for the first time. And then she fell asleep. :) |
Aimee showing new moves to veggie tales tunes.
Also, while I was writing this post, I looked over and this cute little boy was reading to his sissy. Don't mind the Christmas music two days early in the background. The kids made me turn it on.
A few prayer requests:
-Aimee is sick again. I have lost count of how many cough/colds she has had in the past couple of months. Nothing makes me want to take up swearing more than Aimee getting sick again. As you know, a simple cold is so challenging for her (and me).
-She is still having difficulty with reflux and consequently vomiting. We have requested a change in her medication dose and are hopeful that will do the trick. Should begin this increase this weekend.
-This next couple weeks are jammed with check up appointments at the hospital. Health for Aimee, energy for me, and patience for Caleb!
11.1.12 Neurodevelopmental
The kids and I met with the Neurodevelopmental clinic yesterday. Such a
refreshing visit with a doctor who is willing to answer any questions
about any area. He oversees Aimee's care at children's and makes sure
we feel that every detail is being covered. I typically bring in a list of concerns
or wonderings that he addresses and then he reviews with us all her recent issues. He
was very pleased with how happy and animated Aimee has become.
Definitely found our new therapy intriguing.
At the end of the day, we only ended up with a few areas to make adjustments to for now. First, we started Aimee on a reflux medication to adjust the pH of her stomach acid. We hope this will reduce her vomiting and allow us to get her adequate nutrition again. Second, we talked about using suppositories to help keep her closer to regular. Only going every 2 weeks makes for some sad days. We are considering doing this in addition to the laxative medication she already taking. Lastly, we calculated what amount of fluids Aimee needs when running a fever, so that we have a goal to work towards. She has been sick so much recently. It seems like about half of the time she is sick and we are fighting to keep her hydrated. It will help to know what fluid volume is necessary during those times. Of course, actually reaching that illusive number is another tale altogether.
Another interesting item we discussed was the shape of Aimee's skull. As she grows, the left side of her face is becoming more and more pronounced. He showed me how her head isn't circular overall. Parts of her brain have grown or not grown and the plates have come together sooner in some spots. This has caused her one ear to be more forward, one side of the back of head to be more flat, and the left side of her face to be larger than the right.
We also reviewed the hip x-rays that were taken in January. I found it really interesting to see the differences made by not bearing weight. Her bones are not as strong and sturdy. The tops of the bones were also deformed in that they're straight instead of bent as is typical. Love actually learning how her body works, even the details I don't absolutely need to know. The little things that help me understand her better.
At the end of the day, we only ended up with a few areas to make adjustments to for now. First, we started Aimee on a reflux medication to adjust the pH of her stomach acid. We hope this will reduce her vomiting and allow us to get her adequate nutrition again. Second, we talked about using suppositories to help keep her closer to regular. Only going every 2 weeks makes for some sad days. We are considering doing this in addition to the laxative medication she already taking. Lastly, we calculated what amount of fluids Aimee needs when running a fever, so that we have a goal to work towards. She has been sick so much recently. It seems like about half of the time she is sick and we are fighting to keep her hydrated. It will help to know what fluid volume is necessary during those times. Of course, actually reaching that illusive number is another tale altogether.
Another interesting item we discussed was the shape of Aimee's skull. As she grows, the left side of her face is becoming more and more pronounced. He showed me how her head isn't circular overall. Parts of her brain have grown or not grown and the plates have come together sooner in some spots. This has caused her one ear to be more forward, one side of the back of head to be more flat, and the left side of her face to be larger than the right.
We also reviewed the hip x-rays that were taken in January. I found it really interesting to see the differences made by not bearing weight. Her bones are not as strong and sturdy. The tops of the bones were also deformed in that they're straight instead of bent as is typical. Love actually learning how her body works, even the details I don't absolutely need to know. The little things that help me understand her better.
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. :)
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.
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.
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.
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.
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.
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!
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!
Does anyone have experience with purchasing private insurance? We are currently in the market for coverage and would love to hear any helpful insights that you may have.
Does anyone have experience with purchasing private insurance? We are currently in the market for coverage and would love to hear any helpful insights that you may have.
9.30.12 Blood, Phlegm, and Tears
It's getting late, going on 11:30. Ed and Caleb have both been in bed for hours. Aimee and I are spending the hours of the night together on the couch. Just the two of us, the iPad, a fuzzy blanket, and the suction machine. Most nights Aimee does well sleeping on her own in her twin bed at a slight incline. Then there are these types of nights. Ones that include blood, phlegm, and tears. Usually all Aimee's, but admittedly a few of the tears fall from my eyes as well.
We have had several minor illnesses cycle through our little family over the last several weeks. Annoying and tiring for the other three of us, challenging and exhausting for Aimee. A constant battle being waged against aspiration and dehydration.
Yet, I am very thankful as I sit here that I am here, at home, able to care for her myself in middle of her little fights. Thankful that I was chosen to wipe her tears, share her laughs, and her hold her tight. And certainly most thankful that I do not do any of it alone.
We have had several minor illnesses cycle through our little family over the last several weeks. Annoying and tiring for the other three of us, challenging and exhausting for Aimee. A constant battle being waged against aspiration and dehydration.
Yet, I am very thankful as I sit here that I am here, at home, able to care for her myself in middle of her little fights. Thankful that I was chosen to wipe her tears, share her laughs, and her hold her tight. And certainly most thankful that I do not do any of it alone.
9.26.12 TVI update
Wanted to share this great email update I just received from Aimee's Teacher of the visually impaired (TVI) regarding their lesson this morning. It made my day! :D
"Hi Rosa, You have such a fun little girl! Aimee seemed delighted when Kim (Aimee's teacher) told her that she was going to go play with me - she smiled, giggled, and waved arms and legs. The best visual response I had today was to my face - which I think is very cool. She focused on me twice in the "therapy room" and really looked in a concentrated way at my face when I was saying goodbye and that I would see her next week. She also gave me several great responses when I talked to her about you - I had my thumbs in her hands and when I would ask her "Is Mommy going to come back and get you?" She would brighten and squeeze my thumbs really hard. She did this more than once - are you special or what?!!!"
"Hi Rosa, You have such a fun little girl! Aimee seemed delighted when Kim (Aimee's teacher) told her that she was going to go play with me - she smiled, giggled, and waved arms and legs. The best visual response I had today was to my face - which I think is very cool. She focused on me twice in the "therapy room" and really looked in a concentrated way at my face when I was saying goodbye and that I would see her next week. She also gave me several great responses when I talked to her about you - I had my thumbs in her hands and when I would ask her "Is Mommy going to come back and get you?" She would brighten and squeeze my thumbs really hard. She did this more than once - are you special or what?!!!"
9.25.12 An Issue of Mathmatics
Imagine yourself as a young child standing in front of a blackboard that is covered in complex mathematical equations. You can see the numbers and symbols sprawled across the board, but you do not see any pattern or order. At your age you are just learning to recognize the individual numbers or perhaps count to 10. As you look at the board, you recognize a number or two. Really though, you have just the tiniest bit of understanding of what the markings on the board mean, even though you can see everything on it.
I heard a similar example recently to describe the symptoms of CVI, the vision impairment that Aimee has. Her brain doesn't know how to interpret the information that it gathers through the camera of her eyes. For Aimee, this same scenario applies to not just her vision, but also to her hearing, physical movements, emotions, and communication. She has the parts and pieces, but doesn't have the ability to interpret how they relate to each other.
This understanding of Aimee's obstacles has helped me to come to a big decision. Namely, we will not be going back to traditional therapy. We are currently half way through our trial period with the Anat Baniel Method. No matter what, even if we are not able to continue with these sessions, we will not go back. I have come to realize that asking Aimee to sit up when she does not yet have the ability to hold up her own head is like asking a child who is learning to recognize numbers to add fractions. Balancing her on an exercise ball (one of the exercises done in physical therapy) is like putting her in front of that blackboard and asking her to solve the equations.
One might see the little progress reports that I have been posting as meaningless. Yet, from my perspective, these little steps are like learning that 2 comes after 1 and before 3. That little bit of knowledge is essential if one wants to eventually solve the equations on the blackboard. Aimee's little new movements are all essential to the bigger movements of grasping objects, forming words, expressing feelings, and even seeing faces.
Really, Aimee is brilliant. Despite major obstacles that her brain has, she is learning. Even though the world around her is in many ways like sets of complex equations that she cannot understand, she still works to learn how the pieces relate to each other. She values and delights in each tiny new connection that she learns. After seeing this, how could I ever again ask her to perform a movement before it's time?
We have noticed a slowing in the amount of new movements that Aimee has made over the past couple of weeks. It is hard to know how much this is due to her surgery, subsequent eye infections, and increase in seizures or even just the added stress of being back in school. We had been warned upon leaving the center in August that we would see regression. We instead have seen continued progress. However, in order to stimulate more progress, we have a trip to the therapy center in California scheduled for the 3rd week in October. We were able to schedule half of the lessons with a therapist who has worked specifically with Cerebral Palsy patients for the past 25 years. Although Aimee does not have Cerebral Palsy specifically, she does share many of the symptoms. Plus, Aimee's therapist that we see in Bellevue twice a week will be down at the center that same week and able to sit in on these lessons. We are really excited!
We have applied and been approved for a partial scholarship for this upcoming trip. We plan to drive down and stay with family on the road as much as possible. By initial calculations, it looks like the lessons, gas, food, and lodging will come to about 3,500. A daunting figure, but we are continuing forward. Please agree with us that the trip would be provided for over this next month.
I heard a similar example recently to describe the symptoms of CVI, the vision impairment that Aimee has. Her brain doesn't know how to interpret the information that it gathers through the camera of her eyes. For Aimee, this same scenario applies to not just her vision, but also to her hearing, physical movements, emotions, and communication. She has the parts and pieces, but doesn't have the ability to interpret how they relate to each other.
This understanding of Aimee's obstacles has helped me to come to a big decision. Namely, we will not be going back to traditional therapy. We are currently half way through our trial period with the Anat Baniel Method. No matter what, even if we are not able to continue with these sessions, we will not go back. I have come to realize that asking Aimee to sit up when she does not yet have the ability to hold up her own head is like asking a child who is learning to recognize numbers to add fractions. Balancing her on an exercise ball (one of the exercises done in physical therapy) is like putting her in front of that blackboard and asking her to solve the equations.
One might see the little progress reports that I have been posting as meaningless. Yet, from my perspective, these little steps are like learning that 2 comes after 1 and before 3. That little bit of knowledge is essential if one wants to eventually solve the equations on the blackboard. Aimee's little new movements are all essential to the bigger movements of grasping objects, forming words, expressing feelings, and even seeing faces.
Really, Aimee is brilliant. Despite major obstacles that her brain has, she is learning. Even though the world around her is in many ways like sets of complex equations that she cannot understand, she still works to learn how the pieces relate to each other. She values and delights in each tiny new connection that she learns. After seeing this, how could I ever again ask her to perform a movement before it's time?
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| Aimee on her first day back to school last week. |
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| Excited for school. |
We have noticed a slowing in the amount of new movements that Aimee has made over the past couple of weeks. It is hard to know how much this is due to her surgery, subsequent eye infections, and increase in seizures or even just the added stress of being back in school. We had been warned upon leaving the center in August that we would see regression. We instead have seen continued progress. However, in order to stimulate more progress, we have a trip to the therapy center in California scheduled for the 3rd week in October. We were able to schedule half of the lessons with a therapist who has worked specifically with Cerebral Palsy patients for the past 25 years. Although Aimee does not have Cerebral Palsy specifically, she does share many of the symptoms. Plus, Aimee's therapist that we see in Bellevue twice a week will be down at the center that same week and able to sit in on these lessons. We are really excited!
We have applied and been approved for a partial scholarship for this upcoming trip. We plan to drive down and stay with family on the road as much as possible. By initial calculations, it looks like the lessons, gas, food, and lodging will come to about 3,500. A daunting figure, but we are continuing forward. Please agree with us that the trip would be provided for over this next month.
9.13.12 Seizures are from Hell
Hell, home of terror and death, must also be the native place of seizures. The fear that Aimee experiences during her episodes is so contrary to her peaceful, joyful daily demeanor. She is always trusting and typically radiating joy and calm. When I see her cross over into fear, those Hell bound seizures are usually on hand.
Yesterday was Aimee's tear duct surgery. They probed through her tear ducts in both eyes and placed tiny silicone tubes through the ducts into her nose. These tubes will stay in for about 4 months. Hopefully after removing the tubing, her ducts will remain large enough to drain tears and keep her eyes free from more infections.
The surgery went well. Ed left work to come wait with me at the hospital. Aimee always takes longer than expected to wake up from anesthesia and I get nervous as I wait. True to form, she kept us waiting awhile, but by the time she was back in my arms, she was fairly alert. Then begins the examination. It really frustrates me how we know so little about what happens with her from the time they carry her away to the time when they wheel her back. I search her arms and legs for how many tries it took to get the IV into her. This time I found 3 failed attempts. I wonder about the blood on her arm or the bruising on her cheek. No parent can completely protect their child, but, for now at least, I am Aimee's defender, since she cannot speak for herself.
After we were discharged from the hospital, we went pick up Caleb. He spent the day with my brother and his family. We were so thankful that they gave us a place to rest and fed us dinner. Before we headed home though, Aimee became afraid and began seizing. I can't even completely remember what she sounded like. It seems surreal to remember. She voiced her feelings really loudly. She wasn't crying, just speaking. Her scared proclamations were mingled with seizures and she had 4 clusters of this combination up until I was able to get her to sleep in her own bed last night.
It seems like the fear that she felt from the whole day's experience was finally coming out. Her mind was finally coming out of the groggy anesthetic fog and connecting with the feelings she had inside. Although the positive side of her expression of feeling and her loud voice are definitely wonderful, the awful seizures and the additional fear that they bring, out weigh the other for me. And I just prayed, as every parent must do in those moments when you have no ability to protect your child from the world or in this case from her own brain. I prayed that those seizures would go back to their homeland.
Yesterday was Aimee's tear duct surgery. They probed through her tear ducts in both eyes and placed tiny silicone tubes through the ducts into her nose. These tubes will stay in for about 4 months. Hopefully after removing the tubing, her ducts will remain large enough to drain tears and keep her eyes free from more infections.
The surgery went well. Ed left work to come wait with me at the hospital. Aimee always takes longer than expected to wake up from anesthesia and I get nervous as I wait. True to form, she kept us waiting awhile, but by the time she was back in my arms, she was fairly alert. Then begins the examination. It really frustrates me how we know so little about what happens with her from the time they carry her away to the time when they wheel her back. I search her arms and legs for how many tries it took to get the IV into her. This time I found 3 failed attempts. I wonder about the blood on her arm or the bruising on her cheek. No parent can completely protect their child, but, for now at least, I am Aimee's defender, since she cannot speak for herself.
After we were discharged from the hospital, we went pick up Caleb. He spent the day with my brother and his family. We were so thankful that they gave us a place to rest and fed us dinner. Before we headed home though, Aimee became afraid and began seizing. I can't even completely remember what she sounded like. It seems surreal to remember. She voiced her feelings really loudly. She wasn't crying, just speaking. Her scared proclamations were mingled with seizures and she had 4 clusters of this combination up until I was able to get her to sleep in her own bed last night.
It seems like the fear that she felt from the whole day's experience was finally coming out. Her mind was finally coming out of the groggy anesthetic fog and connecting with the feelings she had inside. Although the positive side of her expression of feeling and her loud voice are definitely wonderful, the awful seizures and the additional fear that they bring, out weigh the other for me. And I just prayed, as every parent must do in those moments when you have no ability to protect your child from the world or in this case from her own brain. I prayed that those seizures would go back to their homeland.
9.7.12 Needed: Two Cookies
It has been one of those weeks. Misunderstandings by email
with therapists, frustrations with scheduling appointments, meetings
with school and teachers, expensive medical equipment not covered by
insurance, fussy baby in an unsuccessful hearing exam, feverish Aimee,
work stress escalating for Ed, fraudulent credit card transactions,
incorrect hospital bill, 3 trips to pharmacy for 1 prescription, more
limitations on daily activities, and burnt cookies. I realize eating
cookies is not a mature way of dealing with the stress of reaching
Friday and feeling like you just can't make yourself lunch. I just
needed (well, wanted) two cookies. After everything else, please, just
two cookies. Two cookies that are now burnt and smelling up my house.
The smell reminding me that I can't even manage two cookies. And no, I
don't know what I'm making for dinner. Burnt cookies anyone?
All that being said, there is much to be thankful for this week too. My nieces and brother's family who have helped to watch Caleb during Aimee's lessons twice a week. My sister-in-law and mom who have come over every week to care for Aimee so I can run errands. My niece who bought me Starbucks with her own money during a particularly long day of appointments yesterday. The stranger who opened a door for me that I couldn't get open. The nurse who held Caleb so that I could unpack Aimee's chair for weigh-in. The kind lady at the hospital parking garage who offered to help me. And most of all, my Ed, who has been selfless in the evenings even when he has been stressed and sick.
Aimee is starting school on the 17th again. Although the preschool teacher had originally hoped to have Aimee in class for 4 days a week this year, it is just too much for me right now. At least for this next few months with 2-3 trips to Bellevue/Seattle a week, 2 days a week in class seems much more reasonable. The teacher is on board with the suspension of all in school therapy for now. She even was willing to help me rewrite the IEP (Individual Education Plan) without having to face-to-face confront the team. I have received a few negative emails from different members, but I honestly don't blame them. They have seen success working with their method and they are skeptical of alternative options. Until I started seeing these changes in Aimee, I was skeptical too. BUT, I can't argue with progress! Maybe once they see the differences, they will be more open to it as well.
The only therapist that we have decided to continue working with is Aimee's vision teacher (TVI). She really cares about Aimee and is willing to make the effort to incorporate the basic principles in her sessions that we have applied at home. She was eager to gather more tools for helping Aimee succeed and even agreed to read the book. Aimee will continue to work with her on a weekly basis.
More changes we have noticed this past week:
-Lifting her left leg singly and even touching the left foot to the right leg.
-Pulling her upper torso forward in her chair, as if to get out.
-More emotional periods or greater expression of emotions.
-Louder talking, even outside of home.
-More coordinated hand movement.
-Different tongue motions, even mock biting her tongue with it sticking sideways out of her mouth.
-Feeling her hair with both hands on top of head.
-Itching her nose with her right hand flat under her nostrils.
-Pushing her lower back and hips forward while in chair.
All that being said, there is much to be thankful for this week too. My nieces and brother's family who have helped to watch Caleb during Aimee's lessons twice a week. My sister-in-law and mom who have come over every week to care for Aimee so I can run errands. My niece who bought me Starbucks with her own money during a particularly long day of appointments yesterday. The stranger who opened a door for me that I couldn't get open. The nurse who held Caleb so that I could unpack Aimee's chair for weigh-in. The kind lady at the hospital parking garage who offered to help me. And most of all, my Ed, who has been selfless in the evenings even when he has been stressed and sick.
Aimee is starting school on the 17th again. Although the preschool teacher had originally hoped to have Aimee in class for 4 days a week this year, it is just too much for me right now. At least for this next few months with 2-3 trips to Bellevue/Seattle a week, 2 days a week in class seems much more reasonable. The teacher is on board with the suspension of all in school therapy for now. She even was willing to help me rewrite the IEP (Individual Education Plan) without having to face-to-face confront the team. I have received a few negative emails from different members, but I honestly don't blame them. They have seen success working with their method and they are skeptical of alternative options. Until I started seeing these changes in Aimee, I was skeptical too. BUT, I can't argue with progress! Maybe once they see the differences, they will be more open to it as well.
The only therapist that we have decided to continue working with is Aimee's vision teacher (TVI). She really cares about Aimee and is willing to make the effort to incorporate the basic principles in her sessions that we have applied at home. She was eager to gather more tools for helping Aimee succeed and even agreed to read the book. Aimee will continue to work with her on a weekly basis.
Video from last week shows some of Aimee's new single leg kicks.
More changes we have noticed this past week:
-Lifting her left leg singly and even touching the left foot to the right leg.
-Pulling her upper torso forward in her chair, as if to get out.
-More emotional periods or greater expression of emotions.
-Louder talking, even outside of home.
-More coordinated hand movement.
-Different tongue motions, even mock biting her tongue with it sticking sideways out of her mouth.
-Feeling her hair with both hands on top of head.
-Itching her nose with her right hand flat under her nostrils.
-Pushing her lower back and hips forward while in chair.
8.27.12 Two Weeks At Home
-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!
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| Ed putting the finishing touches on the railing. |
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| Aimee's first trip down her completed ramp. |
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.
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.
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!
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.
More miracle stories to come!
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.
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| It was wonderful to take Aimee swimming in the salt water pool! |
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| She loves playing with the iPad |
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| Keeping a wary eye on her brother |
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.
-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.
-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.
-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!
-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!
-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.
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| Look how well she is supported in her chair compared to the car seat. |
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| 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.
7.25.12 On and on my friend...
Anyone else watch Lambchop when you were little? Around '92, my BFF and I used to sing the song over and over again, for goodness knows what reason. "This is the song doesn't end. It goes on and on my friend..." It makes you feel a little loopy singing round in circles.
And I feel that same loopiness again. This morning I spoke with the Genetics doctor regarding the disorder CDKL5. This is another possible match with many of Aimee's symptoms. We had submitted a request to test for this disorder, but were denied by our insurance company. Does it really matter? As I read this morning on another mom's blog, "having a diagnosis means practically nothing and practically everything." I found this mom's site through the CDKL5 support site. From this side of the fence, getting a diagnosis seems like being accepted into an exclusive club. All of the sudden, you are in-the-know with a group of other parents. There are colors and hope products and lingo. Just thinking about passing to the "known diagnosis" side makes me feel giddy. I realize it doesn't mean there is a cure, but it does mean resources, knowledge, and maybe even a bit of companionship.
I try not to read up on syndromes, since we have had so many disappointments. Yet, this morning, after hearing that we would not be able to test for it, I wanted to know if CDKL5 matched Aimee at all. Of course, I wish I hadn't now. It probably isn't the answer, but seeing all the information that is out there for the 200 families that know for sure that this is the disorder that their child has... well it makes me realize how much information could be out there for us somewhere. It makes me feel like I'm singing a ridiculous looped song over and over again. Will we ever reach the answer at the end of the song or will the song really go on and on?
Since we can't do this test, our Geneticist is entering Aimee's banked DNA into her own research. She is currently sequencing seizure syndromes and there is a possibility that she could find a match with Aimee. Fingers crossed.
Monday we met with the Opthalmologist. I scheduled the appointment for 3 reasons:
1. Aimee has started to track during vision therapy. A few times now she has even tracked across the midline, which is a HUGE deal, as it means that one side of her brain communicated with the other side. Unfortunately, every time this has happened, one of her eyes wandered.
2. For the past several months, Aimee's eyes have been weepy and seeping constantly.
3. General check up to make sure that functionally her eyes are still in good form.
The first problem of the lazy eye was impossible to deal with in the appointment. Aimee refused to wake up. There was no way for him to determine if we needed to be concerned or not. If her eye does continue to wander, her brain will eventually blind that eye in order to preserve visual clarity. We really want her to keep the limited amount of visual input that she already gets. It is essentially in our court, as the doctor can't say if the problem is concerning at this point. If we feel that it is, then we should patch her good eye for 4 hours a day to teach her brain to use the weaker eye.
For the gooey eyes, we had a dye disappearance test done. They put a drop of dye in each eye and then waited 15 minutes or so to see if the tear ducts would drain it through the nose as they should. Unfortunately, both her tear ducts were completely blocked. The Opthalmologist feels that the reason for the blockage is due to her very small nasal passages and small facial bones. He is concerned that she will have constant infection and skin deterioration around the eyes. In order to attempt to prevent this, she will go under anesthesia in September. They will first probe the duct to clear it and the place a stent in the duct to keep it open.
As far as her eye functionality, it seems that they are continuing to work well. Her visual issues are all caused by neurological dysfunctions. Meaning that her eyes can see, but her brain doesn't process the information. We have discovered, with the help of the vision therapist, that she does have the ability to interpret certain types of visual stimulus in controlled environments though.
Yesterday, Aimee and I (and Caleb) met with the Preschool teacher in preparation for the coming school year. Ed and I need to decide over the coming few weeks how many days per week we would like to have Aimee in school and whether or not to send her via bus (I'm thinking not so much). They are hoping to have her there 4 days from 9:30-12. She will continue to have vision, speech, occupational, and physical therapy during those times and the teachers are all very excited to have her back in class. It was pretty neat to hear the teacher talk about how much they have learned from Aimee over this past year. She is the most "difficult" student they have as far as severity of disability goes, but they are really rising to the challenge of stimulating her in class.
And I feel that same loopiness again. This morning I spoke with the Genetics doctor regarding the disorder CDKL5. This is another possible match with many of Aimee's symptoms. We had submitted a request to test for this disorder, but were denied by our insurance company. Does it really matter? As I read this morning on another mom's blog, "having a diagnosis means practically nothing and practically everything." I found this mom's site through the CDKL5 support site. From this side of the fence, getting a diagnosis seems like being accepted into an exclusive club. All of the sudden, you are in-the-know with a group of other parents. There are colors and hope products and lingo. Just thinking about passing to the "known diagnosis" side makes me feel giddy. I realize it doesn't mean there is a cure, but it does mean resources, knowledge, and maybe even a bit of companionship.
I try not to read up on syndromes, since we have had so many disappointments. Yet, this morning, after hearing that we would not be able to test for it, I wanted to know if CDKL5 matched Aimee at all. Of course, I wish I hadn't now. It probably isn't the answer, but seeing all the information that is out there for the 200 families that know for sure that this is the disorder that their child has... well it makes me realize how much information could be out there for us somewhere. It makes me feel like I'm singing a ridiculous looped song over and over again. Will we ever reach the answer at the end of the song or will the song really go on and on?
Since we can't do this test, our Geneticist is entering Aimee's banked DNA into her own research. She is currently sequencing seizure syndromes and there is a possibility that she could find a match with Aimee. Fingers crossed.
Monday we met with the Opthalmologist. I scheduled the appointment for 3 reasons:
1. Aimee has started to track during vision therapy. A few times now she has even tracked across the midline, which is a HUGE deal, as it means that one side of her brain communicated with the other side. Unfortunately, every time this has happened, one of her eyes wandered.
2. For the past several months, Aimee's eyes have been weepy and seeping constantly.
3. General check up to make sure that functionally her eyes are still in good form.
The first problem of the lazy eye was impossible to deal with in the appointment. Aimee refused to wake up. There was no way for him to determine if we needed to be concerned or not. If her eye does continue to wander, her brain will eventually blind that eye in order to preserve visual clarity. We really want her to keep the limited amount of visual input that she already gets. It is essentially in our court, as the doctor can't say if the problem is concerning at this point. If we feel that it is, then we should patch her good eye for 4 hours a day to teach her brain to use the weaker eye.
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| Ophthalmologists are not the most gentle of doctors. |
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| Aimee can see light and movement. |
Yesterday, Aimee and I (and Caleb) met with the Preschool teacher in preparation for the coming school year. Ed and I need to decide over the coming few weeks how many days per week we would like to have Aimee in school and whether or not to send her via bus (I'm thinking not so much). They are hoping to have her there 4 days from 9:30-12. She will continue to have vision, speech, occupational, and physical therapy during those times and the teachers are all very excited to have her back in class. It was pretty neat to hear the teacher talk about how much they have learned from Aimee over this past year. She is the most "difficult" student they have as far as severity of disability goes, but they are really rising to the challenge of stimulating her in class.
7.21.12 Good news
We met with the Pulmonary Clinic this week to check in about Aimee's use of the BiPap machine. The doctor was really pleased with her progress and impressed that we have really worked to make this successful. Using the BiPap machine is a big pain, but even worse was trying to get the mask to fit on Aimee's cute little face without causing skin breakdown and without leaks into her eyes. A few months ago, a mask was finally put on the market that is designed for children. We were really excited to try it, but when we got it home we found that we couldn't get it to stay on Aimee's head. Because Aimee has microcephaly (a really small head), the straps that are meant to secure it to her would just slide up and over causing the mask to cover her mouth or chin. We are very excited to report that about 3 weeks ago we devised a simple trick to get her mask to stay on her face properly through the night.
After we met with the doctor, we saw the BiPap technician. He takes the computer from the BiPap and downloads all the information off of it so that they can track Aimee's progress. The computer records a lot of information, including her respiration rate, leak rate, how many hours the mask is on, the pressure rates, ect. He said that he has been spending quite a bit of time with other kids in the hospital that have microcephaly trying to get these new masks to stay on the kids. They have been using medical tape and all sorts of other tricks. When he saw the little adjustment we had made, he was really excited. He said that he was going to let the nurses know so that they could use it in the hospital too. Fun to be able to share a success with other kids, even if it is a little thing.
One of the concerns I had with using the BiPap recently is whether or not to have it on Aimee when she is sick. On one hand, if she has sinus pressure or congestion in her airway, the added pressure from the machine could make her feel much worse. On the other hand, getting proper oxygen would help her to heal faster. I expressed this concern with the doctor and was relieved to find out that if we are consistently using it when she is well, her body will be in the best shape possible to fight illness, even if we can't use it while she is sick. Such a relief!
In other very GOOD news:
Thanks to several of you wonderful friends and family, we have the exact funds needed to take Aimee to the specialized therapy center in California! WOW! What a blessing and weight off of our shoulders. We are really thankful and so excited to report to you from San Rafael. We will be driving away from Washington on August 4th (2 weeks from today!) and our first therapy sessions will be on Monday, August 6th. We will keep you up to date from there on progress and what the therapy is like for Aimee.
After we met with the doctor, we saw the BiPap technician. He takes the computer from the BiPap and downloads all the information off of it so that they can track Aimee's progress. The computer records a lot of information, including her respiration rate, leak rate, how many hours the mask is on, the pressure rates, ect. He said that he has been spending quite a bit of time with other kids in the hospital that have microcephaly trying to get these new masks to stay on the kids. They have been using medical tape and all sorts of other tricks. When he saw the little adjustment we had made, he was really excited. He said that he was going to let the nurses know so that they could use it in the hospital too. Fun to be able to share a success with other kids, even if it is a little thing.
One of the concerns I had with using the BiPap recently is whether or not to have it on Aimee when she is sick. On one hand, if she has sinus pressure or congestion in her airway, the added pressure from the machine could make her feel much worse. On the other hand, getting proper oxygen would help her to heal faster. I expressed this concern with the doctor and was relieved to find out that if we are consistently using it when she is well, her body will be in the best shape possible to fight illness, even if we can't use it while she is sick. Such a relief!
In other very GOOD news:
Thanks to several of you wonderful friends and family, we have the exact funds needed to take Aimee to the specialized therapy center in California! WOW! What a blessing and weight off of our shoulders. We are really thankful and so excited to report to you from San Rafael. We will be driving away from Washington on August 4th (2 weeks from today!) and our first therapy sessions will be on Monday, August 6th. We will keep you up to date from there on progress and what the therapy is like for Aimee.
7.7.12 Genius
More than being successful, more than being independent, more than being well educated, physically capable, or adjusted... what I really want for my children is to know that they are loved and free to be the genius they are created to be today.
I have been asked if I am closely monitoring Caleb's development. Really, I am not. One lesson that Aimee has taught me is that development is good, but it is also merely a guide. It should not be allowed to take my focus. It does not determine a future, an ability to love or affect others. Again, I do want to help my children reach their full potential and I pray for them every night that they would have dreams. I do want them to have aspirations and a successful future. I do want Aimee to someday sing and dance. However, we do not get to know how long life will be, so I cannot focus everything on their someday. At times I find myself saying, "When you are older", "When you grow up", "Someday you...". They may always be in training for who they will become (just as we all are), yet, the importance of who they are today should not be ignored.
This week I made up a daily schedule of therapy exercises. When the PT came for an appointment on Monday, she gave me two more daily requirements to add to the list. I just needed to see if they could even all fit in a day with allowances for eating and resting. It actually was possible, but it would have to be the focus of every moment and poor Caleb didn't fit in at all.
The reason why I am processing our life focus, is not because I plan to stop working with Aimee daily. It isn't that I will just toss all thought of tomorrow. It is simply that I find so much of my attention captured by the someday, the long term, that I neglect attending to today.
Today Aimee communicates love. She expresses joy. She shares peace in stormy moments. Yes, she is limited by her circumstances. Yes, it seems like she trapped in a cage. Yet, she can communicate with her heart in a way that I cannot. Her brain and her body don't know how to sing and dance, but her heart does better than anyone else I know. I pray that I do not squelch her current exceptional genius by focusing all attention on teaching her to live like the rest of us tomorrow.
Side Note: We were supposed to meet with Genetics, but ended up cancelling the appointment. Apparently they neglected to run a chromosome test for another possible disorder. A bit frustrating since they were supposed to start the process with banked DNA last July. Hoping to go in for the results of that test in a couple months.
I have been asked if I am closely monitoring Caleb's development. Really, I am not. One lesson that Aimee has taught me is that development is good, but it is also merely a guide. It should not be allowed to take my focus. It does not determine a future, an ability to love or affect others. Again, I do want to help my children reach their full potential and I pray for them every night that they would have dreams. I do want them to have aspirations and a successful future. I do want Aimee to someday sing and dance. However, we do not get to know how long life will be, so I cannot focus everything on their someday. At times I find myself saying, "When you are older", "When you grow up", "Someday you...". They may always be in training for who they will become (just as we all are), yet, the importance of who they are today should not be ignored.
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| light box vision therapy |
The reason why I am processing our life focus, is not because I plan to stop working with Aimee daily. It isn't that I will just toss all thought of tomorrow. It is simply that I find so much of my attention captured by the someday, the long term, that I neglect attending to today.
Today Aimee communicates love. She expresses joy. She shares peace in stormy moments. Yes, she is limited by her circumstances. Yes, it seems like she trapped in a cage. Yet, she can communicate with her heart in a way that I cannot. Her brain and her body don't know how to sing and dance, but her heart does better than anyone else I know. I pray that I do not squelch her current exceptional genius by focusing all attention on teaching her to live like the rest of us tomorrow.
Side Note: We were supposed to meet with Genetics, but ended up cancelling the appointment. Apparently they neglected to run a chromosome test for another possible disorder. A bit frustrating since they were supposed to start the process with banked DNA last July. Hoping to go in for the results of that test in a couple months.
Ps. Check out the great family photos we got taken last weekend with
Erin Cox Photography at HERE at erincoxphoto.com/blog
6.21.12 Hands full of...
Sometimes it is all in the attitude.
Every single time I am out with Aimee and Caleb there is at least one person who watches us for a moment, raises their eyebrows, and says, "You have your hands full". Sure I am carrying Caleb and the diaper bag while pushing Aimee in the chair (which thankfully carries the suction machine, feeding bag, keys, and water bottles). My hands are literally full and I'm not going to lie, it is overwhelming. Particularly when a nurse or doctor want Aimee out of the chair and just watch me try to figure out how to do it all safely. In the end though, when a bystander makes that statement, I say, "full of joy". It helps me to remember that I can choose to see my hands as full of stress or full of blessing. I take a deep breath, thank God for the grace to figure it out, and go forward choosing to enjoy my sweeties.
One of these big stresses is putting Aimee to work. Everyday she is supposed to do the following exercises:
Some of these activities are fun and enjoyable for Aimee. Some of them are hard work. Some of them she (and I) really dislike.
Aimee has made progress over the last couple of years, but I quite often feel like I am failing her because I am not able to fit all of these exercises into her day. This is part of the reason that we have been looking closely at the Anat Baniel method. Her theory is that when we are stressed and uncomfortable, our brain can't learn. When the ABM therapists do a lesson with an individual, they work to keep the learner as comfortable as possible throughout and do very slow, gentle movements.
A couple of weeks ago, I took Aimee to Seattle Sensory Education, the local ABM therapist, for a consultation and lesson. The whole experience was very comfortable. Aimee was awake and engaged. The therapist really seemed to understand that she needed time to adjust. We laid Aimee on a table, similar to a massage table. She stayed on her back through the whole appointment, as this is the most comfortable position for her. Unlike so many therapists and doctors we have seen, there were no attempts to force her to stay awake. No jerking and wiggling her to try and get her attention. It was very peaceful.
Given the severity of Aimee's needs and the complete difference in mindset of this method, we have decided to take Aimee down to the therapy center in San Rafael, Ca for one intensive week of lessons. We applied to the center and were approved for 10 lessons in the first week of August. I felt that the summer break would be the ideal time to test out this method for Aimee. If we feel that this will be an improvement for her, we can then face the school district and hospital to rethink the current required exercises. If necessary, we will take her out of school or refuse therapy.
This might seem extreme, but given all the time and stress that our current attempts require of Aimee, we feel that we have to try another way. We definitely want to help her reach her full potential and know that this will require work. We have seen some progress over the past couple years, so I don't mean to discredit the traditional therapy methods. However, we haven't seen enough progress to justify her whole life being filled with stressful days.
Please support us with prayer as we continue forward. If you feel led to, we do also need financial support. The lessons at the center will be $2,000 for all 10 lessons. We will also have expenses for hotel, travel, and food, as well as, for Ed taking off an unpaid week from work. God has always provided for our needs and we know He will continue to do so.
Every single time I am out with Aimee and Caleb there is at least one person who watches us for a moment, raises their eyebrows, and says, "You have your hands full". Sure I am carrying Caleb and the diaper bag while pushing Aimee in the chair (which thankfully carries the suction machine, feeding bag, keys, and water bottles). My hands are literally full and I'm not going to lie, it is overwhelming. Particularly when a nurse or doctor want Aimee out of the chair and just watch me try to figure out how to do it all safely. In the end though, when a bystander makes that statement, I say, "full of joy". It helps me to remember that I can choose to see my hands as full of stress or full of blessing. I take a deep breath, thank God for the grace to figure it out, and go forward choosing to enjoy my sweeties.
One of these big stresses is putting Aimee to work. Everyday she is supposed to do the following exercises:
- Vision therapy with light box 20-30 minutes
- Vision therapy with blackboard/flashlights 20-30 minutes
- Hip work in stander with or without tray 30 minutes
- Tummy time on wedge with and without arm braces 15-25 minutes
- Work with communication buttons, asking for 'more' and 'all done'
- Work with activating head, hand, and foot switches throughout the day on wedge, in chair, or sitting in tumble form
- Mouth and tongue exercises 5-10 minutes twice per day
- Kneeling at couch or against peanut 10-15 minutes
- Sensory activity with rice and beans, shaving cream, sand, ect
Some of these activities are fun and enjoyable for Aimee. Some of them are hard work. Some of them she (and I) really dislike.
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| Aimee in stander with tray |
A couple of weeks ago, I took Aimee to Seattle Sensory Education, the local ABM therapist, for a consultation and lesson. The whole experience was very comfortable. Aimee was awake and engaged. The therapist really seemed to understand that she needed time to adjust. We laid Aimee on a table, similar to a massage table. She stayed on her back through the whole appointment, as this is the most comfortable position for her. Unlike so many therapists and doctors we have seen, there were no attempts to force her to stay awake. No jerking and wiggling her to try and get her attention. It was very peaceful.
Given the severity of Aimee's needs and the complete difference in mindset of this method, we have decided to take Aimee down to the therapy center in San Rafael, Ca for one intensive week of lessons. We applied to the center and were approved for 10 lessons in the first week of August. I felt that the summer break would be the ideal time to test out this method for Aimee. If we feel that this will be an improvement for her, we can then face the school district and hospital to rethink the current required exercises. If necessary, we will take her out of school or refuse therapy.
This might seem extreme, but given all the time and stress that our current attempts require of Aimee, we feel that we have to try another way. We definitely want to help her reach her full potential and know that this will require work. We have seen some progress over the past couple years, so I don't mean to discredit the traditional therapy methods. However, we haven't seen enough progress to justify her whole life being filled with stressful days.
Please support us with prayer as we continue forward. If you feel led to, we do also need financial support. The lessons at the center will be $2,000 for all 10 lessons. We will also have expenses for hotel, travel, and food, as well as, for Ed taking off an unpaid week from work. God has always provided for our needs and we know He will continue to do so.
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