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.
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.
5.31.12 A champion
Yesterday was Aimee's very first school field trip. I debated back on forth on whether or not to take her. Partly due to a long napless day for Caleb, but mostly because it was 50/50 on how Aimee would respond. Would she just fall asleep as soon we got to this unknown place or would she enjoy it in some way?
We drove out to Padilla Bay in the morning and pulled into the parking lot of the Interpretive Center behind the school bus. As soon as I opened the car door we could hear all the excited kids and Aimee lit up. She smiled and kicked as the nurse walked her through the different rooms. Her best friend Alyah brought her seashells and pine cones to feel. Aimee was having a great time.
Then we headed down to the sand. I couldn't take her chair all the way down as it was a sandy slope, but her PT was there and helped carry her down into the sand. At first, Aimee just sat there. We buried her feet in sand and she was still. As we played with the sea grass, a bucket of sea water, and the sand, Aimee started to show enjoyment. She smiled and moved her toes and fingers. What a joy to see! I was so impressed and so was her PT. Aimee was working hard to participate and show her excitement. The PT kept saying to Aimee over and over, "you are a champion".
My whole opinion of this therapist changed at that moment. She is so right. Movements and reactions that are simplistic and "no-brainer" for us, are feats for Aimee to attempt. She lives in a world that speedily moves on around her and she is hyper aware of it. She can hardly see, sounds are muffled, and her own brain doesn't know how to communicate with the rest of her body. BUT she is so tuned in to where she is at every moment. Her attention is captured by the scents, the temperatures, the movements, the pressures, and the moods. Aimee gets life and joyfully works hard to participate in it. Aimee is truly a champion.
We drove out to Padilla Bay in the morning and pulled into the parking lot of the Interpretive Center behind the school bus. As soon as I opened the car door we could hear all the excited kids and Aimee lit up. She smiled and kicked as the nurse walked her through the different rooms. Her best friend Alyah brought her seashells and pine cones to feel. Aimee was having a great time.
Then we headed down to the sand. I couldn't take her chair all the way down as it was a sandy slope, but her PT was there and helped carry her down into the sand. At first, Aimee just sat there. We buried her feet in sand and she was still. As we played with the sea grass, a bucket of sea water, and the sand, Aimee started to show enjoyment. She smiled and moved her toes and fingers. What a joy to see! I was so impressed and so was her PT. Aimee was working hard to participate and show her excitement. The PT kept saying to Aimee over and over, "you are a champion".My whole opinion of this therapist changed at that moment. She is so right. Movements and reactions that are simplistic and "no-brainer" for us, are feats for Aimee to attempt. She lives in a world that speedily moves on around her and she is hyper aware of it. She can hardly see, sounds are muffled, and her own brain doesn't know how to communicate with the rest of her body. BUT she is so tuned in to where she is at every moment. Her attention is captured by the scents, the temperatures, the movements, the pressures, and the moods. Aimee gets life and joyfully works hard to participate in it. Aimee is truly a champion.
5.25.12 Yearling
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| Picking up the chair May 2011 |
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| Hanging out in her favorite seat May 2012 |
5.21.12 - Aimee Appleseed
Sunday morning Aimee laughed from 4am til after 6am. Then Aimee laughed during church. Today Aimee laughed when we pulled up to Children's and laughed again when her brother cried to be fed. I love how my Dad described her on Sunday as being like Johnny Appleseed spreading joy seeds every where she goes. It is one of her gifts. She is definitely not limited in planting joy in each person that she meets.
We took Caleb down to Bellevue to have a BAER hearing exam on the 10th. The audiology department was hoping to determine if Aimee's hearing loss is a separate genetic condition or if it is completely related to her unknown syndrome. Of course, we felt that if Caleb did have any hearing loss, we would like to know as soon as we could. So, we decided to take him in before he hit the 6 month mark, because at that point they put the baby under anesthesia for the long test (it is typically around 2 hours). However, this 5 month old baby was not about to naturally sleep through a test that includes electrodes all over his head and tiny probes into his ear. It seemed like a useless endeavor from the start, but looking back at it, I'm not sure why I even tried. Since that failed, I am going to hold off until he is old enough for a behavioral screening in about 4 months.
Caleb and I took Aimee to Seattle for her check in with Orthopedics today. The doctor said her feet look really great and he is totally pleased that we decided to discontinue the use of the shoes and bar a year early. HOORAY! However, he did feel like the curve in her spine has become worse over the past 6 months. He is referring us to have a spinal x-ray and meet with a specialist. At this point they most likely won't be doing any treatment, as braces are typically ineffectual in children with such low tone. We'll pretty much be taking her in to discuss the future options and to have baseline measurements/x-rays taken.
We took Caleb down to Bellevue to have a BAER hearing exam on the 10th. The audiology department was hoping to determine if Aimee's hearing loss is a separate genetic condition or if it is completely related to her unknown syndrome. Of course, we felt that if Caleb did have any hearing loss, we would like to know as soon as we could. So, we decided to take him in before he hit the 6 month mark, because at that point they put the baby under anesthesia for the long test (it is typically around 2 hours). However, this 5 month old baby was not about to naturally sleep through a test that includes electrodes all over his head and tiny probes into his ear. It seemed like a useless endeavor from the start, but looking back at it, I'm not sure why I even tried. Since that failed, I am going to hold off until he is old enough for a behavioral screening in about 4 months.
Caleb and I took Aimee to Seattle for her check in with Orthopedics today. The doctor said her feet look really great and he is totally pleased that we decided to discontinue the use of the shoes and bar a year early. HOORAY! However, he did feel like the curve in her spine has become worse over the past 6 months. He is referring us to have a spinal x-ray and meet with a specialist. At this point they most likely won't be doing any treatment, as braces are typically ineffectual in children with such low tone. We'll pretty much be taking her in to discuss the future options and to have baseline measurements/x-rays taken.
5.4.12 Honey Bird
We are still having some difficulty with the fit of the mask. As Aimee is growing the right side of her face is quite a bit less pronounced than the left side, so the mask is always somewhat tilted.
I am excited to tell you about a book that I have been reading called 'Kids Beyond Limits'. It is written by Anat Baniel who has been working with special needs children for over 30 years. Rather than focusing specifically on fixing what the child can't do, she uses gentle methods to connect with the child and stimulate their brain to learn. It is all about maximizing their potential, just like we want for all of us. She says that children with special needs have the potential to be even more brilliant than their peers if they are enabled to learn how to overcome their limitations their own unique way. Through her therapy kids with autism, asperger's, brain damage, ADHD, cerebral palsy, sensory disorders, and undiagnosed developmental delays have seen amazing results.
Some of the things that she says in her book that have caught my eye:
-If the child could do it, they would. Basically, the solution isn't that you just need to show them how to sit repeatedly. If you do, she claims, you are actually teaching them to fail over and over again. The inability gets repeated so many times that it is the pattern the child's brain learns.
-The brain is amazing and has the ability to compensate for missing parts, damaged areas, and other limitations. We want for them to develop their own ability to awaken their brain to learn and grow.
-Goals are important, but they should be flexible goals. When we are teaching the brain to make more connections, it is going to pick up new skills and understanding. We don't get to choose what skills those connections become.
-Believe for the impossible for your child. Don't give up hoping and being enthusiastic.
There is so much more to tell you about what I have learned in reading this book. Two things that I will tell you for the moment though. First, I have discovered a mom in Bellevue that learned Anat Baniel's method in order to work with her own daughter who struggled with sensory issues. She now offers clinic part time called Seattle Sensory Education. I talked to her today and she is going to do a free consultation/lesson with Aimee in a few weeks. The lessons are quite expensive, but I know God will provide. I'm excited to begin!
The second thing I wanted to share was this little poem I started writing about Aimee yesterday. I have felt inspired these last several days since reading this book. It is really very rough, but at least you can see that there is great hope for our little honey bird.
Honey bird in charming cage
No hatch to let you fly
Yet lithe, swift with poised wings
Ready to soar high
Affectionate bird in baffling snag
Sparse light does find your eye
Yet bright, whole with full sight
Ready to see why
Treasured bird in partial maze
Squeezed between tight bar
Yet strong, complete with possible
Ready to journey far
Peaceful bird in murky fog
Muffled fragments heard
Yet joyful, comprehending
Ready to sing the word
Miracle bird in doubting world
Hopes elusive held
Yet faith, tomorrow loves its part
Ready to contraries weld
Honey bird in charming cage
One day soon you'll fly
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