Notable observations from day 3:
-Aimee is paying attention
-She fell off the bed for the first time last night (we're looking at this as a positive event, at least now that we know she is okay)
-a lot of finger play and extending fingers straight
-lifted one leg individually and bent it while keeping the other leg on floor
-kept eyes open more than closed. I took several photos of her and in almost all she had her eyes open. Major change.
-visually tracking therapist during lesson
-continued lightness, noted now in arms as well as whole body. Therapist described to us that the muscles have no abilities unless the brain tells them to act. Aimee's brain is realizing how to communicate with the muscles through her spine and she is beginning to hold herself.
8.7.12 Day 2
Today Aimee was especially sleepy, probably due to the amount of information she is taking in during the lessons. However, when awake, we noticed the following non-typical, exciting behaviors:
-wider eyes, more intentional looking
-touched iPad while watching fluidity application
-back did not collapse during time propped on elbows in therapy
-participated in rolling movement during therapy
-visually tracked red apple toy
-part of spine that yesterday therapist described as a block or unmapped portion, was showing progress at moving with the rest of her body
-used spine and shoulder to move arm, instead of just moving arm alone
-doing shoulder shrugs during dinner
-overall slightly less loose and feels a bit lighter when carrying, almost like she is partly holding her own body
We have been pleasantly surprised by the weather here. We came expecting mid to high 60's and it has been 20 degrees warmer. Perfect for taking the kids swimming in the salt water pool at the hotel. Today Aimee was more relaxed and enjoyed it. I will definitely post pictures when we get home!
-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
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