Tessa had her second booth test on Tuesday at Hearts for Hearing. It was a unique experience and very different from the first one she had about a month or so ago. The unaided booth test is performed without her hearing aids and this time we were able to track more noticable responses to sound, probably due to Tessa's improved head control. Darin, me, Tessa and Tami (Tessa's AV therapist) all go into the booth and her audiologist, Kimi, sits outside the booth looking through a window and administers the hearing test. Darin holds Tessa in his lap with her sitting upright with as much freedom for movement as possible, while Tami and I watch Tessa intently to determine her responses to sound. Because of Tessa's motor delay and physical challenges, her reactions to sound are very unique to her.
It is an important process to begin observing Tessa's responses to sound so that when it's time to activate her cochlear implant (CI) in late June, we will be able to notice those similar responses during activation and testing. In the booth, Tessa's response wasn't immediately after hearing the sound, but there was a consistent delay in her reponse. It was very exciting to watch her be consistent, which ultimately tells us that she was hearing and responding to what she heard. It was very apparent to me during the test, that the delay in response is because of Tessa's motor challenges...not necessarily because she wasn't hearing anything. It was amazing to watch, because the longer we were in there observing her, the more I realized that her little brain was working so hard to recognize the sound and then to tell her little body to move in response to the sound. As hard as it is for her to do...she did it, over and over again. Her movements varied slightly between her bringing her hand up to her mouth a few moments after hearing the sound, or the turning or tilting of her head in response to a sound. There were also a few times where she would look at Tami or me thinking that the sound was coming from us....Little Miss Social ;) In general, it is difficult to perform booth tests on young children because you can't necessarily give the instruction "raise your right or left hand to signal when, and in which ear, you hear a sound." So, in many ways Tessa's responses are very normal for a child her age...it does take time to register the sound and have a response. For Tessa, there might just be a few more moments in between her movements and that will just be what is appropriate for her at this time.
We will go through several cochlear implant 'counseling' sessions between now and Tessa's June 7th surgery date. We will be learning about the equipment, the process of mapping and activating the device, the changes to anticipate with Tessa, and so-on and so-on. Tessa will be receiving the Nucleus 5 cochlear device: http://products.cochlearamericas.com/cochlear-implants/nucleus-5-system . As with any surgery, there are benefits and risks with the cochlear implant. One question we discussed on Tuesday was whether or not Tessa would ever be able to wear her right hearing aid again/hear out of her right ear without the CI. The answer is probably not. Tessa will likely lose any residual hearing in her right ear because the implant may destroy any remaining hearing in the implanted ear. This made me pause for a moment, but really, it all comes down to the fact that Tessa won't be able to learn speech and language with her diagnosis of profound hearing loss, so she has everything to gain and very little to lose with the CI. It was a difficult moment, I won't lie. It is a little scary to realize that we will be taking away what she does have in hopes of so much more.
I was driving to work Wednesday morning just thinking about all the new information we learned about CIs the evening before. There's plenty to be overwhelmed by, but lots to be excited about as well! I think I tend to miss a lot of opportunities for spiritual application in my life, but God's been working on me, and He blessed me with a spiritual way of thinking about the cochlear implant process. It's difficult to think about them 'stripping away' what is left of Tessa's own hearing by performing the surgery for the implant. Even though we know the hearing that Tessa does have is minimal, damaged and incapable of giving her the opportunities in life to learn to talk...it is what we know ~ all we know....what Tessa knows and all Tessa knows. Tessa's severe to profound hearing loss and her little pink hearing aids have become our normal and what we are comfortable with. But what we realize is that the decisions we are making today for her ears, are for the impact they will have on her future. The old has to be stripped away in order for her hearing to be made new. When we surrender our lives to the Lord it can feel like we are taking a risk. The way we are, the things we know, the habits we've formed and the comfort we've developed...all these things have to be stripped away in order to follow Christ. It requires us to allow the old/the comfortable to be replaced by the new and holy. Without Him we are minimal, we are damaged and we are incapable of experiencing the opportunities in life designed for His glory and His purpose. It is a difficult thing sometimes to acknowledge how much we need Him, but the gift of salvation is free and ours when we acknowledge that we need Him.
Wednesday morning I was thankful for this spiritual application regarding the cochlear implant process. I believe that God has gifted professionals in this world, from doctors to therapists, to allow us access to hopeful remedies for things damaged of this world. Tessa will be just as God has intended her to be: in some remedies we may find success and in others maybe failure, but the glory will be to the Lord because Tessa's life belongs to Him. As Tessa's mom, this process requires me to have faith...and at times I need a little boost. I think this week I got a kick of what I needed to move ahead in confidence by faith and faith alone. ~Whitney
Thursday, March 31, 2011
Friday, March 25, 2011
Poem: At My Own Pace
A friend of mine at work shared this poem with me today, I love it!
At My Own Pace
My appearance may be different but my feelings are the same.
I laugh and I cry and take pride in my gains.
I was sent here among you to teach you to love,
as God in Heaven looks down from above.
To Him, I'm no different; His love knows no bounds;
It's those here among you in the cities and towns,
that judge me by standards that man has imparted,
but this Mama I've chosen, will help me get started.
For I'm one of the children so special and few,
that came here to learn the same lessons as you.
That love is acceptance,
it must come from the heart;
we all have the same purpose,
though not the same start.
The Lord gave me life to live and embrace,
and I'll do it as you do,
but at my own pace.
Author Unknown...
At My Own Pace
My appearance may be different but my feelings are the same.
I laugh and I cry and take pride in my gains.
I was sent here among you to teach you to love,
as God in Heaven looks down from above.
To Him, I'm no different; His love knows no bounds;
It's those here among you in the cities and towns,
that judge me by standards that man has imparted,
but this Mama I've chosen, will help me get started.
For I'm one of the children so special and few,
that came here to learn the same lessons as you.
That love is acceptance,
it must come from the heart;
we all have the same purpose,
though not the same start.
The Lord gave me life to live and embrace,
and I'll do it as you do,
but at my own pace.
Author Unknown...
Thursday, March 24, 2011
"Living Hope"
1 Peter 1: 3-9
Praise to God for a Living Hope :
(3) Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, (4) and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, (5) who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. (6) In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. (7) These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. (8) Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, (9) for you are receiving the end result of your faith, the salvation of your souls.
I've been thinking a lot lately about what it takes to stay focused on our goals and committed to the things in this life that God has given us responsibility over. I feel I have accepted the roller coasters of emotion that will inevitably follow us on this journey, but I find myself asking 'why' and 'how' a lot. When these questions pop in my head I feel a bit like a failure, but I understand at the same time, that it is normal, and like I said...seemingly inevitable. However, I think the real issue comes when we are consumed by the questions. I think that consumption of anything can rob us of what it takes to stay motivated, focused and committed to the things that God has for us.
I've thought a lot lately about maintaining a 'balance of perspective'. There are so many highs and lows, changes and adjustments, burdening anticipation coupled with tremendous joy. While our lives have taken on new meaning and a new normal...there are days where I catch myself in shock over where we are and the things that we are dealing with. Obviously I can't live my life "in shock", but I also don't feel like it is necessarily healthy to settle into a place of assumption that what we are going through is normal. I feel like I am always learning such unique lessons about life and about what it means to have a "living hope". Our lives have entered a realm in which we cannot ignore the situations and circumstances that are painfully beyond what we are dealing with, but I also struggle with the ever-growing category of things becoming trivial. There is guilt over feeling such sadness for others when our situation pales in comparison to those around us, but there is also frustration and resentment when navigating the trivial that seems to surround us, as well. This is the balancing act that can at times, consume my mind. Guilt and sadness and frustration and resentment do not even come close to resembling the "living hope" that comes from a genuineness of faith.
I want to be healthy, I always want to be pursuing better: for my husband, for my children and for my family and friends. I want to be in tune with my emotions, good or bad, and always recognize where I am at, in order to come out on the other side. Like I said, I have been thinking a lot about how to keep a balance of perspective in my life and about my life. What I have realized, is that maybe the effort to achieve 'balance' has begun to consume me. Acknowledging that there will always be things harder than what we are dealing with, is healthy. Acknowledging that things that once seemed significant, might now be more trivial, is healthy. Living in fear that at any point along the way I might become imbalanced, is not. I don't believe that God calls me to be responsible for maintaining an appropriate 'worldly' balance in my life, I do believe that He calls me to have a genuinesness of faith and a living hope.
All in all, I've realized that in my life and on this journey, I need to spend more of my efforts on God's promises and spend less time being consumed with where I feel like I should be emotionally and in terms of the world around me. I have promises that go beyond this world around me. I have commitments that require me to stay motivated and focused. The balance is not over my feelings of guilt or resentment...the balance for me, is choosing a living hope, to navigate this life God has planned for me.
~Whitney
Praise to God for a Living Hope :
(3) Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, (4) and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, (5) who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. (6) In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. (7) These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. (8) Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, (9) for you are receiving the end result of your faith, the salvation of your souls.
I've been thinking a lot lately about what it takes to stay focused on our goals and committed to the things in this life that God has given us responsibility over. I feel I have accepted the roller coasters of emotion that will inevitably follow us on this journey, but I find myself asking 'why' and 'how' a lot. When these questions pop in my head I feel a bit like a failure, but I understand at the same time, that it is normal, and like I said...seemingly inevitable. However, I think the real issue comes when we are consumed by the questions. I think that consumption of anything can rob us of what it takes to stay motivated, focused and committed to the things that God has for us.
I've thought a lot lately about maintaining a 'balance of perspective'. There are so many highs and lows, changes and adjustments, burdening anticipation coupled with tremendous joy. While our lives have taken on new meaning and a new normal...there are days where I catch myself in shock over where we are and the things that we are dealing with. Obviously I can't live my life "in shock", but I also don't feel like it is necessarily healthy to settle into a place of assumption that what we are going through is normal. I feel like I am always learning such unique lessons about life and about what it means to have a "living hope". Our lives have entered a realm in which we cannot ignore the situations and circumstances that are painfully beyond what we are dealing with, but I also struggle with the ever-growing category of things becoming trivial. There is guilt over feeling such sadness for others when our situation pales in comparison to those around us, but there is also frustration and resentment when navigating the trivial that seems to surround us, as well. This is the balancing act that can at times, consume my mind. Guilt and sadness and frustration and resentment do not even come close to resembling the "living hope" that comes from a genuineness of faith.
I want to be healthy, I always want to be pursuing better: for my husband, for my children and for my family and friends. I want to be in tune with my emotions, good or bad, and always recognize where I am at, in order to come out on the other side. Like I said, I have been thinking a lot about how to keep a balance of perspective in my life and about my life. What I have realized, is that maybe the effort to achieve 'balance' has begun to consume me. Acknowledging that there will always be things harder than what we are dealing with, is healthy. Acknowledging that things that once seemed significant, might now be more trivial, is healthy. Living in fear that at any point along the way I might become imbalanced, is not. I don't believe that God calls me to be responsible for maintaining an appropriate 'worldly' balance in my life, I do believe that He calls me to have a genuinesness of faith and a living hope.
All in all, I've realized that in my life and on this journey, I need to spend more of my efforts on God's promises and spend less time being consumed with where I feel like I should be emotionally and in terms of the world around me. I have promises that go beyond this world around me. I have commitments that require me to stay motivated and focused. The balance is not over my feelings of guilt or resentment...the balance for me, is choosing a living hope, to navigate this life God has planned for me.
~Whitney
Tuesday, March 22, 2011
Sisters
A girl couldn't ask for better sisters. God's done amazing things with the bond we have and the love we share!
I love the way we celebrate life together ~ sharing our struggles and our blessings, our similarities and our differences ~ as wives and as mothers, we celebrate everything amazingly unique, from our marriages to our kids and all that's in between!
Love you both with all my heart!
~Whit
I love the way we celebrate life together ~ sharing our struggles and our blessings, our similarities and our differences ~ as wives and as mothers, we celebrate everything amazingly unique, from our marriages to our kids and all that's in between!
Love you both with all my heart!~Whit
Birthday Celebration
We were able to make a trip to Austin for my nephew Rylan's 1st birthday! He turned 1 on Friday and the party celebration was on Saturday. Tessa and Rylan are just three weeks apart and it was really sweet of everyone to help us celebrate Miss Tessa while we were there too! (Tessa will be 1 on April 8th) We took all the kids to Build-A-Bear and they worked together to make Tessa the cutest little bear...named appropriately: "Rayne-Bow" (good thinking Hill!)
Lindsay made Tessa the most Beautiful cake! Thanks so much Linds...and it was super yummy too! Big brother Parker blew out Tessa's first candle for her :)
Here's the bear-making-crew: Haden, Kelbie, Parker, Keaton and Mason
They did such a good job and all have such tender hearts. It was such a wonderful way for them to love and celebrate Tessa Rayne.
Lindsay made Tessa the most Beautiful cake! Thanks so much Linds...and it was super yummy too! Big brother Parker blew out Tessa's first candle for her :) 
Tessa's sweet Aunts had a great idea of letting the big-kids build Tessa her first Build-A-Bear ~ it was a great way for them to help celebrate Tessa's birthday!
Here's the bear-making-crew: Haden, Kelbie, Parker, Keaton and Mason
They did such a good job and all have such tender hearts. It was such a wonderful way for them to love and celebrate Tessa Rayne.
And here's "Rayne-Bow" - up close and personal ;)
Tessa warming up to her new buddy.
Tessa and Rylan will undoubtedly share a very special bond growing up so closely together. We are so fortunate that Tessa is surrounded by so much love and compassion from her Aunts and Uncles and her five precious cousins. We couldn't have ask for sweeter moments. Thank you all for such a fun weekend together ~ we love you very much!
Tessa warming up to her new buddy.
Tessa and Rylan will undoubtedly share a very special bond growing up so closely together. We are so fortunate that Tessa is surrounded by so much love and compassion from her Aunts and Uncles and her five precious cousins. We couldn't have ask for sweeter moments. Thank you all for such a fun weekend together ~ we love you very much!
~Whitney
Monday, March 21, 2011
Giggles to Share
I love it...I'm barely even touching her and she's still giggling like crazy!
~Whitney
~Whitney
Last Weekend - Sweet Visit
Uncle Tommy and Aunt Lacy dropped by for a visit! It was great to see them and they got in some Tessa-Lovin time while they were here.
Love you guys!!
Love you guys!!
~Whitney
Wednesday, March 16, 2011
Surgery Date is Set!
We got Tessa's surgery scheduled for her right cochlear implant for Tuesday June 7th! Our goal will definitely be to get our house sold and into a lease house and settled before this date so that Tessa can have a peaceful, speedy recovery from surgery. Our house is officially on the market (as of last Friday!). You can go to http://www.alanandheatherdavis.com/ and it's the first one listed under "Featured Properties". We haven't had any showings yet, but are hopeful and prayerful about God's timing. We also had an adjuster come out and take a look at our roof and we will be getting a brand new roof and new guttering...can't hardly beat that as a good selling point. We will be working with a property leasing company to find a lease home for when our house sells and to stay in while our new house is being built.
We met with Tessa's surgeon on Monday and he said that the implant procedure itself will take about 2 hours and as long as she does well with the anesthesia and everything, we will take her home the same day. There will be about a 3 day window of intense recovery and then just general incision care for a week or so after that. After the implant surgery, Tessa's audiologist will begin the process of programming in preparation for activiation of the device within 2 to 4 weeks after surgery. There will be lots of anticipation wrapped up in our month of June. There are no guarantees that the implant will work for Tessa, this is why they only do one at a time. We ask all of you to begin praying with us now, that it will be a huge success and that Tessa will be granted this amazing gift of hearing. Without cochlear implants, since she is profoundly deaf in both ears, she will not likely ever learn to talk...if the implant is unsuccessful, we will be facing a huge shift in focus for how to open up her world of communication. Tessa's CP presents a difficult challenge for her in the world of sign language. It might be that we could teach her how to understand sign...but it would be very challenging for her to physically be able to communicate back to us in a simialr way. I hate to even write about the potential 'shift in focus' because I truly have such a peace about the cochlear implant path for her and really feel that God is going to bless Tessa with success!
It is so hard to believe Tessa will be a year old three weeks from Friday. We are really excited about all the changes and opportunities that are happening for her in her life. We are surrounded by such amazing therapists and doctors and it is always encouraging to see their optimism in what she can and will do. Tessa may have a multitute of physical challenges...but she is smart as a whip! Kind of like when we bought her a new big-girl stroller and we took her into the store in it for the first time, sitting up tall, looking around and just taking in every moment. I told Darin that day that I swear if she could have talked she would have said "It's about time you got me out of that darn carrier and sat me up like a big-girl~it only took you 9 months ;) !" I can envision the same scenario when she gets her right ear turned on ~ "It's about time...it only took you a year and 2 months ;)!" We might be in for it though...cause I tend to think my little Tessa is going to be a bit of a smart-butt like her Mom...but she needs all the 'edge' she can get and I have a feeling she is going to bring lots and lots of laughter to the Bynum household....it's just a matter of time.
~Whitney
We met with Tessa's surgeon on Monday and he said that the implant procedure itself will take about 2 hours and as long as she does well with the anesthesia and everything, we will take her home the same day. There will be about a 3 day window of intense recovery and then just general incision care for a week or so after that. After the implant surgery, Tessa's audiologist will begin the process of programming in preparation for activiation of the device within 2 to 4 weeks after surgery. There will be lots of anticipation wrapped up in our month of June. There are no guarantees that the implant will work for Tessa, this is why they only do one at a time. We ask all of you to begin praying with us now, that it will be a huge success and that Tessa will be granted this amazing gift of hearing. Without cochlear implants, since she is profoundly deaf in both ears, she will not likely ever learn to talk...if the implant is unsuccessful, we will be facing a huge shift in focus for how to open up her world of communication. Tessa's CP presents a difficult challenge for her in the world of sign language. It might be that we could teach her how to understand sign...but it would be very challenging for her to physically be able to communicate back to us in a simialr way. I hate to even write about the potential 'shift in focus' because I truly have such a peace about the cochlear implant path for her and really feel that God is going to bless Tessa with success!
It is so hard to believe Tessa will be a year old three weeks from Friday. We are really excited about all the changes and opportunities that are happening for her in her life. We are surrounded by such amazing therapists and doctors and it is always encouraging to see their optimism in what she can and will do. Tessa may have a multitute of physical challenges...but she is smart as a whip! Kind of like when we bought her a new big-girl stroller and we took her into the store in it for the first time, sitting up tall, looking around and just taking in every moment. I told Darin that day that I swear if she could have talked she would have said "It's about time you got me out of that darn carrier and sat me up like a big-girl~it only took you 9 months ;) !" I can envision the same scenario when she gets her right ear turned on ~ "It's about time...it only took you a year and 2 months ;)!" We might be in for it though...cause I tend to think my little Tessa is going to be a bit of a smart-butt like her Mom...but she needs all the 'edge' she can get and I have a feeling she is going to bring lots and lots of laughter to the Bynum household....it's just a matter of time.
~Whitney
Friday, March 11, 2011
Exploring Stander Options
We tried out a different stander at therapy yesterday. The first stander we've been trying is a Static Stander and you get Tessa loaded in it supine (meaning face up). This different stander we tried yesterday, pictured below, is a Dynamic Stander and we put Tessa in it prone (face down). Considering the fact that it could take up to 3 months to actually get her own stander (once all the approvals and paperwork are processed) we are trying to look a little further in the future for how her needs could change between now and then. Tessa has more of a difficult time in this one since there is no head support, but it is amazing because she would be able to motor herself around in it with the wheels. The lack of head support is definitely very challenging for her (as you'll see in the videos below), but I get a little teary thinking about her being able to roll herself around in this one when she does gain more head control and the strength in her hands to move the wheels!
This particular stander is called a Rabbit Pediatric Mobile Stander. The other feature about it that is nice is it is much more compact than the other one. It's exciting but at the same time, I find myself wanting to be a little cautious. Tessa didn't have near the same reation to this one as the first one because it does require so much more work on her part. BUT, we prefer to be hopeful, that by the time this one came in for her, she will have gotten that much stronger and it will be the perfect thing for her at that time. It is just so exciting to think about the freedom this would give her when she is ready to be free and motor herself around. The wheels on this thing are amazing...with just the slightest touch she can learn to move around. This would be such an incredible cause and effect experience for her too.
This particular stander is called a Rabbit Pediatric Mobile Stander. The other feature about it that is nice is it is much more compact than the other one. It's exciting but at the same time, I find myself wanting to be a little cautious. Tessa didn't have near the same reation to this one as the first one because it does require so much more work on her part. BUT, we prefer to be hopeful, that by the time this one came in for her, she will have gotten that much stronger and it will be the perfect thing for her at that time. It is just so exciting to think about the freedom this would give her when she is ready to be free and motor herself around. The wheels on this thing are amazing...with just the slightest touch she can learn to move around. This would be such an incredible cause and effect experience for her too.
The last thing we want is for any of this to be a negative experience for Tessa. We want her to enjoy it...so that she'll want to be in it and work hard. This whole equipment thing has been an emotional experience for us in general, but we're excited about the world of opportunity it opens up for Miss Tessa. For those of you that have continued to pray for her progress, please keep the stander decision in your prayers as we let go and seek to trust that God will provide her with exactly what she needs. We continue to trust that and thank you for your prayers and trust in that too.
~Whitney
Saturday, March 5, 2011
Switch Toy Experience
Here are a few videos of Tessa last week trying out the different switches and switch toys during PT. Her favorite was the light-up toy, of course ;) The switch she's using in this video is the Blue Jumbo Switch. She does an awesome job!
Tessa is using the smaller Yellow Switch in this video. It's a little more difficult for her, but again...she did it!
These next two pics are of Tessa trying out the Toggle Switch with the light-up toy. It was a little more difficult for her, but she still gave it her all and did so great!
This is a new little toy that Deb brought and left with us from Vision Therapy on Thursday. When Tessa pushes down on a flower it lights up and plays music....it's like its own little switch toy....she thinks it's great and is perfect to use in her stander!
Just some tickle time with Tessa. Love it, love it.
~Whitney
Friday, March 4, 2011
Some New Information
Ms Victoria took this picture of Tessa the other day and it took on new meaning last night. We had our regular physical therapy at the house and then we also ended up having time with Deb for vision therapy. With all of the snow and with Tessa being so sick, it has been a while since we've had time with Deb. Her outlook has always been and still is, that Tessa is making great strides with her CVI diagnosis; however, last night she gave us something to bring up at Tessa's appointment with Dr. Trigler (her Ophthalmologist) this coming Wednesday. I have been noticing this with Tessa for some time now, but wasn't sure what to make of it or whether or not to be concerned. Tessa's right eye is pulling in nasally and we need to know what is causing it and what should happen next. Deb explained that there are a couple of methods the doctor might want to try, like a patching schedule or prescription glasses. The patching schedule would just mean using a patch over Tessa's left eye to force her to use her right eye and build up the muscles in her right eye. For some reason, the muscle strengths between her two eyes are significantly different and when that happens and continues to happen over a long period of time there is risk for permanent damage. We have been saying all along that Tessa's vision is her greatest strength and the source of much of her joy and happiness. It is stressful to think of anything hindering that for her. Deb also wanted to let us know that very often they go ahead and perform muscle surgery to help correct the uneven muscle strength between her eyes. This is the first we've heard of this, so I haven't even had a chance to research this type of procedure. And like most everything else, we will likely just wait until Wednesday and see what the doctor recommends before we get too worked up about anything. It is so important to get this corrected for Tessa for so many reasons. If surgery is the most immediate and most effective approach...we will definitely prepare for that to be one of our next steps.
Last night, we did spend time filling out the order requests for Tessa's new bath chair (options were red or blue...so red it is) and for her stander! Her stander comes in Midnight Purple ~ obviously Mommy is super excited about that! We will also be ordering Cascade DAFO's - JumpStart Kangaroos. Here's a brief description on their website: Most DAFO patients lack some degree of voluntary control of the foot and/or ankle. Simply put, a DAFO brace (sometimes called an orthosis or splint) provides support to help a patient maintain a foot/ankle position, encourage mobility, and ultimately, improve stability and success. http://www.dafo.com/products/jumpstart-kangaroo/
The picture below is similar to what Tessa will be getting, the one pictured is actually a custom order...but her's will still have pink on it ~ yay. The outer shell and the straps on Tessa's will both be pink, the inner liner (or the piece that comes up the tallest) will just be white. These will be very useful in Tessa's stander. She has a tendency to kind of curve her feet inward and also to stay up on her toes, so these supports will help her be appropriately weight bearing on both of her feet!
We've been busy busy and I still have videos that I want to share from last weeks' physical therapy session....just haven't had the time to get them uploaded. They are of Tessa using and experimenting with Switches and Switch Adapted Toys. I think I mentioned before that this realm of adaptive technology is to help Tessa learn cause and effect to help her communicate with us between now and when she can get her cochlear implants and begin to learn speech and language. Last week was a lot of fun...Tessa was a regular pro at using the switches which pretty much proved to us that she gets 'cause and effect'! Switches and Switch Toys are not covered under "medical necessity" and they are very expensive. After talking it over, Darin and I almost think we'd rather just go ahead and get Tessa an iPad. Melody told us about a new app for the iPad called "Verbal Victor". The app would help Tessa communicate by allowing her to touch the screen and corresponding button which will trigger the device to play a recording that will help her vocalize what she wants to communicate. When reading up on it, it explains how some individuals feel more comfortable using a familiar voice, therefore parents, friends, and caregivers can record phrases suitable for the user. You also upload real pictures for her to choose from; so if she wants Mommy or Daddy, we can upload pictures of us and then voice record "Mommy" and "Daddy" and those would be options for her to choose from. We would also be able to upload a picture of one of her spoons and she could choose it for if she's hungry and a picture of her bottle for if she wants milk. The app is supposed to be able to allow us to present as few as two options at a time. So the screen could just have two images and Tessa will learn how to choose from those images what she wants and at the same time hear a voice recording of what it is she is choosing. As she gets better and better about using her hands we would be able to increase her number of options on the screen for her to choose from. All that to say I guess....iPad here we come :)
So that's a bit of what's been going on in the Bynum world over the last week.
~Whitney