Today was a very difficult day...full of emotion; from frustration to heartache. Today I had to tend to business and face the harsh reality of Tessa's diagnosis in the most uncomfortable of situations. Today I had to visit the Social Security Administration office in order to begin the process of applying for disability benefits on Tessa's behalf. Today I fell apart.
I am a business person and take pride in my organization and attention to detail. But before I am a business person, I am a Mommy...and today those worlds collided. I was overwhelmed today that I should not be having to tend to this type of business for my precious, almost 6 month old, daughter. I wept over the unfairness of our situation, but I had a responsibility to secure necessary provision for my daughter, beyond today and beyond tomorrow.
For those of you that know me well, you know that "worry" could be my middle name. My worry has inhibited me in so many ways, for so many years. It is so interesting to me that at a time in my life when I have more to worry about for the future than I ever have before, I find myself worrying less about tomorrow and dedicating myself to the events of today. Even though my actions today were out of provision for the future, I found myself walking away from it all seeking the purpose behind the chain of events and consequently, my struggles.
I came home this evening emotionally exhausted, but gratefully reminded of God's goodness. I just read my devotional for today from a book my sister gave me called "Jesus Calling" by Sarah Young. Here is a portion:
I am perpetually with you, taking care of you. That is the most important fact of your existence. I am not limited by time or space. My Presence with you is a forever promise. You need not fear the future for I am already there.... Therefore do not worry about tomorrow.
Matthew 6:34: Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
I believe today was so incredibly difficult because God chose the events of my day to reveal His promise of His Presence in my life. God blessed me today with a reference point. I cried more tears today than I have cried in a while, but I also know that there will be more tears to cry...and when those days come ~ I have a reference point...of God's promise to me in my life. Today was hard, but I did it and it's done.
I am thankful that, for all of my tomorrows, I have a reference point for this particular promise of God's presence in my life...and for that, the struggles of today were worth it.
~Whitney
Thursday, September 30, 2010
Saturday, September 25, 2010
Our Miracle
I received a book this week in the mail from my sister. The gentleman that gave her the book to give to us, has a son with Cerebral Palsy and found great comfort from the writings in this book. It is called "Sometimes Miracles Hide - Stirring Letters from Those Who Discovered God's Blessings in a Special Child" by Bruce Carroll.
This is from the very first page of the book:
To all the parents who, with undying courage and eternal hope, have kept on keeping on through sleepless nights, emotional weariness, financial strain, marital stress, and estrangement from friends.
And to all those who, through eyes of faith, have continued to see God's hidden miracles and His blessings wrapped in disguise.
I can't explain the relief that came over me when I read this. Finally, the words to summarize where we are at. We relate to every word. Life is so busy and our schedules are so crazy, and the reality is sleepless nights, emotional weariness, financial strain, marital stress and estrangement from friends.
It is difficult for me to write when I hurt. I am thankful that in almost 2 months, those times have been few, but in all honesty, those moments have been heaviest over the last couple of weeks. So much of what we deal with isn't discussed beyond our Bynum Four. There is so much that goes on, that exists only between me and Darin. This journey is impossible for us without God's hand in every moment. We know He loves us, we know He is guiding us, and our faith in these things, is the strength we have. The overwhelming responsibility we feel to 'keep on keeping on' is met with God's love and promises for our lives.
Tessa feels like a "hidden miralce" in the simple fact that we weren't fully aware of her condition for the first 3 1/2 months of her life. Knowing now, IS the miracle. Knowing how potentially difficult her future could be, but finding the courage and the strength to walk through it with a faith I have never experienced ~ that is the miracle.
It is a blessing to see God as I have never seen Him before. It is a blessing to expect the things my Heavenly Father has promised me. It is a privaledge to walk according to His plan and His purpose for our lives. It is an honor to be chosen as Tessa's mommy. She is our miracle.
~Whitney
This is from the very first page of the book:
To all the parents who, with undying courage and eternal hope, have kept on keeping on through sleepless nights, emotional weariness, financial strain, marital stress, and estrangement from friends.
And to all those who, through eyes of faith, have continued to see God's hidden miracles and His blessings wrapped in disguise.
I can't explain the relief that came over me when I read this. Finally, the words to summarize where we are at. We relate to every word. Life is so busy and our schedules are so crazy, and the reality is sleepless nights, emotional weariness, financial strain, marital stress and estrangement from friends.
It is difficult for me to write when I hurt. I am thankful that in almost 2 months, those times have been few, but in all honesty, those moments have been heaviest over the last couple of weeks. So much of what we deal with isn't discussed beyond our Bynum Four. There is so much that goes on, that exists only between me and Darin. This journey is impossible for us without God's hand in every moment. We know He loves us, we know He is guiding us, and our faith in these things, is the strength we have. The overwhelming responsibility we feel to 'keep on keeping on' is met with God's love and promises for our lives.
Tessa feels like a "hidden miralce" in the simple fact that we weren't fully aware of her condition for the first 3 1/2 months of her life. Knowing now, IS the miracle. Knowing how potentially difficult her future could be, but finding the courage and the strength to walk through it with a faith I have never experienced ~ that is the miracle.
It is a blessing to see God as I have never seen Him before. It is a blessing to expect the things my Heavenly Father has promised me. It is a privaledge to walk according to His plan and His purpose for our lives. It is an honor to be chosen as Tessa's mommy. She is our miracle.
~Whitney
Some Things to Share
My Favorite Three, veggin' out!!!
Parker loves to be involved during floor time physical therapy with Tessa ~
Parker is always so proud when he gets to hold his baby sister...proud and ready to cheese!
This is one of Tessa's favorite toys, can you tell...
Tessa loves watching her mobile in her crib. It seems like she reaches up for it at one point, pretty cool. We think she's feeling a little better :)
Tuesday, September 21, 2010
Small Stuff Category
We've always heard the phrase "Don't sweat the small stuff". Lately our small stuff category just keeps growing and growing. I've told Darin, all these darn little things could seriously make me snap at some point, so I'm learning how to categorize them...and how to do it quickly!
Ultimately, the things we have been dealing with over the last week are just small things, but they are piling up, so I wanted to take some time and share a bit of what things look like for us right now.
I took Parker to the doctor on Friday and found out that he has an ear infection. We've started him on a 10 day round of antibiotics and will get him checked again in a few weeks to make sure it clears up. Yesterday we had an appointment for Tessa with Dr. Wood, an ENT (ear, nose and throat) doctor. She just finished a 10 day round of antibiotics on Friday that was treating her double ear infection, but found out yesterday, that both ears are still very infected. Not good news. This is her second double ear infection in 2 months. Last night we started her on another antibiotic and will follow up with Dr. Wood on October 11th to make sure it has cleared up. If it doesn't clear up, we will likely be scheduling Tessa for tubes. This same doctor put tubes in Parker's ears when he was nine months old, so at least we are familiar with the procedure. If that ends up being the next step with Tessa, we will just be thankful that they are able to do something to help relieve the constant pain she must be in.
She had a really rough night last night. It was very difficult to get Tessa to sleep and then she woke up every hour throughout the night. We can tell she is very uncomfortable and are praying that this second antibiotic does the trick. It's also hard to work with her on her physical therapy when we know she doesn't feel good, so we don't feel like we've made the best progress in that direction.
We're tired, and some of us grumpy ;) but, it is what it is. We'll hope and pray for the best and just keep on keeping on.
I have plenty more to share (gripe about)...but don't we all! And for now, this explains a portion of where we're at and how you could be praying for our sweet little kidos.
~Whitney
Ultimately, the things we have been dealing with over the last week are just small things, but they are piling up, so I wanted to take some time and share a bit of what things look like for us right now.
I took Parker to the doctor on Friday and found out that he has an ear infection. We've started him on a 10 day round of antibiotics and will get him checked again in a few weeks to make sure it clears up. Yesterday we had an appointment for Tessa with Dr. Wood, an ENT (ear, nose and throat) doctor. She just finished a 10 day round of antibiotics on Friday that was treating her double ear infection, but found out yesterday, that both ears are still very infected. Not good news. This is her second double ear infection in 2 months. Last night we started her on another antibiotic and will follow up with Dr. Wood on October 11th to make sure it has cleared up. If it doesn't clear up, we will likely be scheduling Tessa for tubes. This same doctor put tubes in Parker's ears when he was nine months old, so at least we are familiar with the procedure. If that ends up being the next step with Tessa, we will just be thankful that they are able to do something to help relieve the constant pain she must be in.
She had a really rough night last night. It was very difficult to get Tessa to sleep and then she woke up every hour throughout the night. We can tell she is very uncomfortable and are praying that this second antibiotic does the trick. It's also hard to work with her on her physical therapy when we know she doesn't feel good, so we don't feel like we've made the best progress in that direction.
We're tired, and some of us grumpy ;) but, it is what it is. We'll hope and pray for the best and just keep on keeping on.
I have plenty more to share (gripe about)...but don't we all! And for now, this explains a portion of where we're at and how you could be praying for our sweet little kidos.
~Whitney
Tuesday, September 14, 2010
Thank You Slinky!
Well, we had our first meeting with Deb, our SoonerStart vision specialist, yesterday and it was exciting! We learned some great information on how to adjust Tessa's environment to help stimulate her visual pathways. We'd have never guessed that our greatest moment of joy would come from Tessa's new slinky!
Deb held the slinky in front of a black background right in front of Tessa and she showed more concentration on that slinky than I have ever seen her do before. And within moments, she was reaching out to grab the slinky, and in just a few more moments, was bringing the slinky up to her mouth! I think my exact words were "Are You Kidding Me!" We had never seen her do anything like that, nothing other than her beginning to bring her little hand up to her mouth. Her concentration proved incredible visual stimulation, and then, to witness such progress in her fine motor skills...all in that very moment, was a-m-a-z-i-n-g! Thankfully they left the slinky with us since it was such a hit and we have just been amazed watching Tessa have playtime like we've never seen her have before.
Video 1
The first video was while I was watching Tessa in her bouncy seat from behind. I swear I just sat and watched in amazement all evening yesterday. What is really exciting about the first video is how much work she is doing with her right hand. She has such a great hold of the slinky with her left hand and you can just tell she is thinking so hard about grabbing the slinky with her right hand. It is just incredible to watch her work so diligently at it. Opening and closing her little hand and making movements towards the slinky over and over again. I just have to really express that these are all new things for Tessa. For more than 5 months now, time in her bouncy seat was still, relaxed time. For it to, all of the sudden, be transformed into playtime for her just melts my heart.
Video 2
Okay, get ready for it now. In the second video, Tessa is holding the slinky with her right hand and even pulls her hand up and brings the slinky into sight and you can tell she is watching it and seeing it. Then all of the sudden, she looks away for a minute and intentionally grabs the slinky with her left hand...."Are You Kidding Me!" (that's when I get really excited) Ha! Right before my very eyes, she makes such progress between video 1 and video 2. Oh, and not to mention the precious little grin she gives me at the very beginning ~ Fabulous! At the very end of the video you can see how she starts looking up off to her right (and even gives a little grunt). Well, Deb told us that when she is 'light gazing' she is not stimulating any of her visual pathways, so we have started encouraging her, during those moments, to focus back on us or on an object. What it tells me in this video is "Mom, I just worked really hard just now and I need a break!" Well deserved, well deserved!
~Whitney
Sunday, September 12, 2010
Faith In His Arrangement
I found some time this weekend to do a little more reading in Charles Swindoll's The Mystery of God's Will.
I just wanted to share a little of what I read: "Faith is believing God is who He says He is and that He will do what He says He will do. Faith is obeying the Lord when I'm unsure of the outcome. Faith is trusting Him when everything in me screams for empirical proof."
Living by faith means "releasing our own plans and pride and will as we flesh out His plan and purpose. That's what it's all about. In the process, we experience a deep inner peace, a satisfying sense of fulfillment, because we are within the circumference of His plan, moving inexorably toward His destined arrangement for our lives."
I love that last part: His destined arrangement for our lives!
There is so much peace knowing that this is God's arrangement....not mine, not Darin's, not some evildoer out to get us....God's.
God's arrangement for our lives is beautifully described in Jeremiah 29:11-13: For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.
Before we would attempt any new arrangement, we would want to have a plan, and then we would need steps to achieve the plan; ultimately achieving our new arrangement. God's plan for us is prosperity, hope and a future. His steps to achieve that plan revolve around our relationship with Him and our acknowledgement of our need for Him...calling on Him; praying to Him. All He asks for, is our heart...and when we seek Him with our full heart He will complete "His destined arrangement for our lives"!
My Faith has always been the biggest part of my personal journey in my relationship with the Lord. My Faith has sustained me time and time again. My Faith has brought me to God's current arrangement for my life, and my Faith will carry me through this time.
I have always questioned whether or not my Faith was enough. I've always worried about my lack of ability to quote scripture, I've always worried about my lack of a daily devotional, and I've always worried that maybe I didn't quite know enough about the Bible to ever walk through anything h-u-g-e. Well, let me just say, there is PLENTY to be said for my not-so-lacking Faith! My relationship with the Lord has always been such a private and very personal matter for me in my life. There is nothing like the affirmation that the journey I have been walking in my relationship with the Lord has been exactly what it was intended to be. God's arrangement for my life, up to this point, has been perfect and I have nothing but hope for the new arrangement ahead. I worried, worried and worried; when all along, I have been in the circumference of His plan!
I believe that God is who He says He is and that He will do what He says He will do. And I believe that He has brought me to a place, prepared my heart, and instilled in me a desire to learn more about what He says He will do.
I believe that our Faith prompts us to discover His promises, and His promises increase our Faith!
~Whitney
I just wanted to share a little of what I read: "Faith is believing God is who He says He is and that He will do what He says He will do. Faith is obeying the Lord when I'm unsure of the outcome. Faith is trusting Him when everything in me screams for empirical proof."
Living by faith means "releasing our own plans and pride and will as we flesh out His plan and purpose. That's what it's all about. In the process, we experience a deep inner peace, a satisfying sense of fulfillment, because we are within the circumference of His plan, moving inexorably toward His destined arrangement for our lives."
I love that last part: His destined arrangement for our lives!
There is so much peace knowing that this is God's arrangement....not mine, not Darin's, not some evildoer out to get us....God's.
God's arrangement for our lives is beautifully described in Jeremiah 29:11-13: For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.
Before we would attempt any new arrangement, we would want to have a plan, and then we would need steps to achieve the plan; ultimately achieving our new arrangement. God's plan for us is prosperity, hope and a future. His steps to achieve that plan revolve around our relationship with Him and our acknowledgement of our need for Him...calling on Him; praying to Him. All He asks for, is our heart...and when we seek Him with our full heart He will complete "His destined arrangement for our lives"!
My Faith has always been the biggest part of my personal journey in my relationship with the Lord. My Faith has sustained me time and time again. My Faith has brought me to God's current arrangement for my life, and my Faith will carry me through this time.
I have always questioned whether or not my Faith was enough. I've always worried about my lack of ability to quote scripture, I've always worried about my lack of a daily devotional, and I've always worried that maybe I didn't quite know enough about the Bible to ever walk through anything h-u-g-e. Well, let me just say, there is PLENTY to be said for my not-so-lacking Faith! My relationship with the Lord has always been such a private and very personal matter for me in my life. There is nothing like the affirmation that the journey I have been walking in my relationship with the Lord has been exactly what it was intended to be. God's arrangement for my life, up to this point, has been perfect and I have nothing but hope for the new arrangement ahead. I worried, worried and worried; when all along, I have been in the circumference of His plan!
I believe that God is who He says He is and that He will do what He says He will do. And I believe that He has brought me to a place, prepared my heart, and instilled in me a desire to learn more about what He says He will do.
I believe that our Faith prompts us to discover His promises, and His promises increase our Faith!
~Whitney
Thursday, September 9, 2010
Yesterday's Appointments
We ended up taking Tessa at 1:30 yesterday to see her pediatrician for some congestion and coughing that has been going on for over a week now. Unfortunately, she does have another double ear infection :( It's definitely not the news we wanted, but we're really glad we decided to take her in and get her checked out. Her doctor prescribed a strong antibiotic that will hopefully clear it up pretty quick. I don't know if I've mentioned it before, but ear infections can disrupt any hearing that Tessa does have, even with her hearing aids, so it will always be very important for us to make sure, if she does get them, we get them treated asap!
Tessa's vision appointment went very well! It was really nice to hear some positives: there is no blindness and no need for glasses! YAY! It would have been really difficult to manage more 'equipment' for her at this point in time, and we're just so thankful for God's provision in this area. It is remarkable that Tessa didn't sustain any damage from the CMV infection to her retinas or nerves. The CVI (cortical visual impairment) addresses the damage to her visual pathways, and just like everything else, there is a range of severity, and the doctor predicts Tessa's will be moderate. He made the point, that what Tessa sees and the way she sees it, will be perfectly normal for her, she won't ever know any different. Some days she will see better than others, and we will just have to stay in tune with her stress level through it all.
We are anxious to start working with our vision specialist through SoonerStart, and we'll have our first meeting with her on Monday afternoon.
My sister emailed me this verse yesterday and it is my focus for today!
Isaiah 54:10
10 Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed," says the LORD, who has compassion on you.
~Whitney
Tessa's vision appointment went very well! It was really nice to hear some positives: there is no blindness and no need for glasses! YAY! It would have been really difficult to manage more 'equipment' for her at this point in time, and we're just so thankful for God's provision in this area. It is remarkable that Tessa didn't sustain any damage from the CMV infection to her retinas or nerves. The CVI (cortical visual impairment) addresses the damage to her visual pathways, and just like everything else, there is a range of severity, and the doctor predicts Tessa's will be moderate. He made the point, that what Tessa sees and the way she sees it, will be perfectly normal for her, she won't ever know any different. Some days she will see better than others, and we will just have to stay in tune with her stress level through it all.
We are anxious to start working with our vision specialist through SoonerStart, and we'll have our first meeting with her on Monday afternoon.
My sister emailed me this verse yesterday and it is my focus for today!
Isaiah 54:10
10 Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed," says the LORD, who has compassion on you.
~Whitney
Wednesday, September 8, 2010
Keepin It Real
Well, if I'm committed to honesty and keeping things real, then that means the good and the bad. I've gone back and forth on whether or not to post my feelings on something that happened yesterday at Tessa's ear mold fitting...but I do believe this is a source of therapy for me and if I can express what I feel here, maybe I can begin to move on.
I am very particular about my posts: it is never my intention to speak ugly about anyone, but I guess today I feel like the time has come to 'vent' about it here. I say all of that to say...if you are committed to focusing on the positive, you might just bypass this post and maybe wait for the next one ;)
I am writing from a place of sadness and frustration...not of hatred. I have a fight in me for my precious little baby girl, but I also have the ability to step back and understand that what we are going through is not easy to comprehend. I do not fault people for that, but I would not be human if it didn't hurt a little....or hurt a lot.
It isn't about walking in our shoes, but it is about having a loving and compassionate approach to those that are walking in shoes that you may never walk in.
Yesterday afternoon we had to take Tessa to get her new ear molds. We have had amazing experiences so far, but yesterday was a little different. Unfortunately, it was all taking place simultaneously with Tessa's 2 hour eating deadline, so she wasn't the happiest baby at the time. The person that was fitting Tessa with her ear molds was pretty rough with her little ears, trying to get the new molds in right. Putting in ear molds on a 5 month old isn't the easiest job in the world, Darin and I get that...we have to do it every day, several times a day. However, there is a compassionate approach that we take and I believe everyone should take. Granted, a crying baby adds stress to anything, but when you are dedicated to working with kids, I would think a level of tolerance could be expected.
Well, while I was trying to console Tessa, the person said "You better get used to this, little girl"...................really? To a precious little 5 month old baby girl that has no idea what is happening to her or why it is happening to her, really? To a mother exhausted by diagnosis after diagnosis, appointment after appointment, therapy after therapy, really? To a family that has been devastated by endless news of the difficulties our precious little baby will have to overcome in her lifetime, really?
Tessa's realities are indeed difficult, fitting of ear molds is indeed difficult and uncomfortable...but to have such an insensitive expression and approach is incredibly frustrating to me.
For anyone wondering when exactly I would come to a point of emotional breakdown...it was yesterday. As Darin said last night, it is good to let it go and it is good to cry those tears and take some time to fall apart. And I did, yesterday. I am still teary about it all today, but I am hopeful that I can move past it, as our day is very full again today.
Tessa responds to love and compassion....we ALL respond to love and compassion. There is never a point in time that any of us should resign ourselves to "getting used" to something uncomfortable or painful...it can always be better, it can always be approached with love and compassion.
We choose to love Tessa with our words and we choose to love Tessa with our actions...and anyone not on board with that....Please Step Aside! As a mother my heart broke yesterday...today it is on the mend, but I'm afraid it will take some time to let go of those words.
My instinct is to now apologize for 'keepin it real'...but for those of you who find this another charge to pray, I'm afraid I've made it obvious, that there is a need for emotional restoration. Thank you for loving us, encouraging us, and praying for us.
~Whitney
I am very particular about my posts: it is never my intention to speak ugly about anyone, but I guess today I feel like the time has come to 'vent' about it here. I say all of that to say...if you are committed to focusing on the positive, you might just bypass this post and maybe wait for the next one ;)
I am writing from a place of sadness and frustration...not of hatred. I have a fight in me for my precious little baby girl, but I also have the ability to step back and understand that what we are going through is not easy to comprehend. I do not fault people for that, but I would not be human if it didn't hurt a little....or hurt a lot.
It isn't about walking in our shoes, but it is about having a loving and compassionate approach to those that are walking in shoes that you may never walk in.
Yesterday afternoon we had to take Tessa to get her new ear molds. We have had amazing experiences so far, but yesterday was a little different. Unfortunately, it was all taking place simultaneously with Tessa's 2 hour eating deadline, so she wasn't the happiest baby at the time. The person that was fitting Tessa with her ear molds was pretty rough with her little ears, trying to get the new molds in right. Putting in ear molds on a 5 month old isn't the easiest job in the world, Darin and I get that...we have to do it every day, several times a day. However, there is a compassionate approach that we take and I believe everyone should take. Granted, a crying baby adds stress to anything, but when you are dedicated to working with kids, I would think a level of tolerance could be expected.
Well, while I was trying to console Tessa, the person said "You better get used to this, little girl"...................really? To a precious little 5 month old baby girl that has no idea what is happening to her or why it is happening to her, really? To a mother exhausted by diagnosis after diagnosis, appointment after appointment, therapy after therapy, really? To a family that has been devastated by endless news of the difficulties our precious little baby will have to overcome in her lifetime, really?
Tessa's realities are indeed difficult, fitting of ear molds is indeed difficult and uncomfortable...but to have such an insensitive expression and approach is incredibly frustrating to me.
For anyone wondering when exactly I would come to a point of emotional breakdown...it was yesterday. As Darin said last night, it is good to let it go and it is good to cry those tears and take some time to fall apart. And I did, yesterday. I am still teary about it all today, but I am hopeful that I can move past it, as our day is very full again today.
Tessa responds to love and compassion....we ALL respond to love and compassion. There is never a point in time that any of us should resign ourselves to "getting used" to something uncomfortable or painful...it can always be better, it can always be approached with love and compassion.
We choose to love Tessa with our words and we choose to love Tessa with our actions...and anyone not on board with that....Please Step Aside! As a mother my heart broke yesterday...today it is on the mend, but I'm afraid it will take some time to let go of those words.
My instinct is to now apologize for 'keepin it real'...but for those of you who find this another charge to pray, I'm afraid I've made it obvious, that there is a need for emotional restoration. Thank you for loving us, encouraging us, and praying for us.
~Whitney
Saturday, September 4, 2010
Parker's Giggles Are Priceless Too
Parker found an episode of Jungle Junction highly entertaining...
Friday, September 3, 2010
On the Lighter Side
Tessa loves having her hair brushed and Parker likes to help. You can just tell she thinks the world of her big brother! She just started 'talking' to us this week....the connection these two have is precious to watch!
Next Week Just Got Busier!
Monday 9/6: Nothing~Thankful for a long weekend at home to rest and play!
Tuesday 9/7: Hearts for Hearing new ear mold fitting at 4:00.
Wednesday 9/8: Appointment with Dr. Trigler, Opthalmologist, at 3:10 for Tessa's vision follow-up.
Thursday 9/9: Appointment with our SoonerStart Resource Coordinator and Physical Therapist at 3:30 at our house to begin writing Tessa's IFSP (Internal Family Service Plan).
Friday 9/10: Hearts for Hearing Therapy and appointment with SoonerStart Resource Coordinator at 3:00 to add Tessa's Auditory/Verbal Therapist to the IFSP.
The only other "follow-up" type appointment we have scheduled is for Thursday 9/16 with Dr. Kuhls, Pediatric Infectious Disease Medicine, at 3:30. We were encouraged by Tessa's neurologist to follow up with a consultation visit with Dr. Kuhls to get some questions answered related to the nature of the CMV. This was the doctor that the hospital consulted with while we were there, but I think it will be nice to have a conversation with him about how long Tessa might shed the virus and any other information he could give us that would be helpful concerning the virus. Can't hurt!
For now, after the 16th, we will be done with all of the initial doctors' visits and hopefully move into a routine of therapy. Until our meeting next week with SoonerStart, we won't know the exact schedule of therapy, but it could potentially be twice a week starting out. On top of the Physical Therapy, we will continue Tessa's Auditory/Verbal Therapy at Hearts for Hearing once a week to once every two weeks...depending. I'm not sure therapy three times a week is much of a 'routine'....but is our new reality. One thing Darin and I have discovered in our two sessions of therapy so far, is that it is exhausting. There is an overwhelming responsiblity to learn and incorporate things on someone's behalf....espeically your very own precious almost 5 month old daughter! We know that God will give us the strength and the capacity to take it all in and use it to the very best of our ability...but your prayers are always an encouragement. I told someone the other day, we would not be responsible for Tessa as her parents if we were required to 'morph' into something we are not....there is comfort in knowing that exactly who we are is exactly what she will need. Darin and I tend to be the perfect combination for Tessa and for Parker....and we know that is NOT by mistake! Cocky...but true :)
~Whitney
Tuesday 9/7: Hearts for Hearing new ear mold fitting at 4:00.
Wednesday 9/8: Appointment with Dr. Trigler, Opthalmologist, at 3:10 for Tessa's vision follow-up.
Thursday 9/9: Appointment with our SoonerStart Resource Coordinator and Physical Therapist at 3:30 at our house to begin writing Tessa's IFSP (Internal Family Service Plan).
Friday 9/10: Hearts for Hearing Therapy and appointment with SoonerStart Resource Coordinator at 3:00 to add Tessa's Auditory/Verbal Therapist to the IFSP.
The only other "follow-up" type appointment we have scheduled is for Thursday 9/16 with Dr. Kuhls, Pediatric Infectious Disease Medicine, at 3:30. We were encouraged by Tessa's neurologist to follow up with a consultation visit with Dr. Kuhls to get some questions answered related to the nature of the CMV. This was the doctor that the hospital consulted with while we were there, but I think it will be nice to have a conversation with him about how long Tessa might shed the virus and any other information he could give us that would be helpful concerning the virus. Can't hurt!
For now, after the 16th, we will be done with all of the initial doctors' visits and hopefully move into a routine of therapy. Until our meeting next week with SoonerStart, we won't know the exact schedule of therapy, but it could potentially be twice a week starting out. On top of the Physical Therapy, we will continue Tessa's Auditory/Verbal Therapy at Hearts for Hearing once a week to once every two weeks...depending. I'm not sure therapy three times a week is much of a 'routine'....but is our new reality. One thing Darin and I have discovered in our two sessions of therapy so far, is that it is exhausting. There is an overwhelming responsiblity to learn and incorporate things on someone's behalf....espeically your very own precious almost 5 month old daughter! We know that God will give us the strength and the capacity to take it all in and use it to the very best of our ability...but your prayers are always an encouragement. I told someone the other day, we would not be responsible for Tessa as her parents if we were required to 'morph' into something we are not....there is comfort in knowing that exactly who we are is exactly what she will need. Darin and I tend to be the perfect combination for Tessa and for Parker....and we know that is NOT by mistake! Cocky...but true :)
~Whitney
Thursday, September 2, 2010
Neurology Appointment Summary
Discussions from our neurology appointment on Monday:
Epilepsy
Severe to Profound Bilateral Sensorineural Hearing Loss
Cortical Visual Impairment (CVI) and
Cerebral Palsy (CP)
Obviously the epilepsy covers the seizures they believe Tessa had been having frequently until starting her on the medication, Trileptal, in the hospital. The only seizures we were ever aware of, were the two that she had in the hospital. Because of how drastic the improvement in her behavior was after starting the medication, they can only assume that she had been experiencing them since birth. We have had continued success with the medication and are very thankful for that!
Epilepsy
Severe to Profound Bilateral Sensorineural Hearing Loss
Cortical Visual Impairment (CVI) and
Cerebral Palsy (CP)
Obviously the epilepsy covers the seizures they believe Tessa had been having frequently until starting her on the medication, Trileptal, in the hospital. The only seizures we were ever aware of, were the two that she had in the hospital. Because of how drastic the improvement in her behavior was after starting the medication, they can only assume that she had been experiencing them since birth. We have had continued success with the medication and are very thankful for that!
The severe to profound bilateral sensorineural hearing loss is the diagnosis that we received from the audiologist after Tessa failed her hearing screening during our early August hospital stay. She has been fitted with the most powerful hearing aids on the market. The information I have read says that even with the most powerful hearing aids, she will likely rely heavily on lip-reading and/or sign language....but I say, God knows how incredibly important it is to us, as her parents, to be able to communicate with our sweet Tessa, so we say...hearing, speaking, signing, lip-reading...whatever it may be...it will be beautiful ~ because it will be the way that God allows us to share, with our precious daughter, her incredible purpose in this world!
Cortical Visual Impairment or CVI is the diagnosis for Tessa's vision difficulties. We have our follow-up vision appointment this next Wednesday afternoon to find out a bit more of what this might mean for Tessa. One thing I read online said that when a child with CVI needs to control her head, use her vision and perform fine motor tasks, the effort can be compared to a neurologically intact adult learning to knit while walking a tightrope. We say, we are committed to helping Tessa achieve her greatest potential in this area of her diagnosis! She has vision, she does see things and track things with her eyes....it may be overwhelming to her at times and be a bit more difficult for her....but just like anything else...it's not about the diagnosis, it's about our faith and our perseverence ~ and we got-that!
Cerebral Palsy or CP was discussed in more detail at our appointment Monday, than it had been before. It is anticipated that Tessa will deal with Spastic cerebral palsy. This refers to the increased tone, or tension, in a muscle. Normal muscles work in pairs. When one group contracts the other group relaxes, allowing free movement in the desired direction. Due to complications in brain-to-nerve-to-muscle communication, the normal ebb and flow of muscle tension is disrupted. Muscles affected by spastic cerebral palsy become active together and block effective movement. The doctor anticipates that we will begin to see signs of this in Tessa over the next few months. This is the area of diagnosis that we do not feel like we have had any experience in with Tessa so far...so we will begin watching and learning in order to be equipped at that point in time. We will also begin therapy in the next week or so, potentially twice a week, to address her motor delays and potentially the effects of the CP on her body. It is still very much an unknown to us ~ to everyone. There are so many types of CP and, with anything else, a range of severity...so to know how it will all end up affecting Tessa, will take time to determine and understand.
The most hopeful part of our discussion at Tessa's neruology appointment on Monday was the potential for Tessa to begin the process of rewiring her brain. We were told in the hospital that babies brains are incredibly resiliant...but we received more insight about this resiliency in our rewiring/remapping discussion with her neurologist. For example, we have been told that there is significant damage to the vision part of Tessa's brain, hence the CVI diagnosis...but what we don't know, is how Tessa could begin to remap where she processes what she sees, so that it bypasses the damaged part of her brain and begins processing through an undamaged part of her brain. Brilliant, absolutely brilliant! This beats the heck out of "We Don't Know"....this information presents Tessa with the opportunities of a lifetime! This gives us, as her parents, something to encourage her in and something to help us fight for, with her~! The potential here is HUGE! With a little encouragement and the strength God has given her, Tessa can begin (and I believe has already begun) to rewire! There is also the potential for Tessa to remap the focal point of her seizures...meaning no-more-seizures! It is a possibility...and I tell you what....between the possibilities considered by the doctor and our FAITH...Game-On!
It has taken me several days to compose this particular post. I have decided that it isn't as much about the daunting task of sitting down to write about the negative, but more that what the doctors have to say to us is not where we put our trust. We trust in our faith and we have confidence in our faith. I write from a very honest and true place in my heart, and while I understand that each and every diagnosis is important to understand in order to approach her therapy, what we believe is so much more important to us. It is conflicting to have to embrace the knowledge and information about Epilepsy, Hearing Loss, CVI and CP...when ultimately our journey with Tessa is one of faith and perseverence. But at the same time, we trust that God will provide us with the tools on our journey, to in fact, help us help Tessa, achieve her greatest potential in every aspect of her life! It is a responsibility we have been given and a responsibility we are committed to with every ounce of who we are!
I felt that it was very important to cover the points of discussion from our appointment on Monday, so that I am able to address each diagnosis throughout her journey, knowing I have presented them to each of you, here. Your encouragement is invaluable, and your prayers, our lifeline...and I do believe the specifics of our journey are important to share for that purpose.
Thank you for your patience as I found the time and the energy to share some specifics. Whether or not they are specifics for Tessa, well let's all just start praying for her rewiring skills and wait and see, right!
~Whitney
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