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.
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