Aimee woke up at about 2:30 this morning like she was coming out of a long trance. The past several days if she opened her eyes, she wasn't really present. Suddenly she was making normal Aimee sounds, kicking her legs, looking around, and grinding her teeth! And she has been at it ever since. Love it!
She isn't quite herself yet, still a junky cough from drainage and some difficulty with getting full calories, but this is a huge, giant improvement. She has been spending nights in her chair right next to my side of the bed. Worked really well cause we could hear if her breathing was regular easily, adjust the angle she was reclined, hold her hand, keep her liquids running, suction her, ect. Not conducive to rest, except that we were able to lay in our own bed. All worth it, but seriously hoping today is the day I can get in a shower and perhaps even a nap!
Thank you for all the love this week!
4.25.13 Update
The good news:
Odd as it sounds, one exciting thing that happened today was Aimee's nose ran for the first time... EVER. Also, she has been breathing partly through her nose today! Success in that area already!
The meh news:
She is having a really hard time with drainage from the surgery site down her throat. Coughing and constantly chocking on it when she is awake.
Her temperature has been fluctuating between a low fever and a low body temperature. I don't know what to make of that.
She has been sleeping a lot today, which is great. She needs it! But, when she is awake, she is uncomfortable and moaning continually. Not sure if it is pain or if she is confused by the sensation/ability to breath through her nose.
Praying for a restful night with less choking tonight. We all need it!
Odd as it sounds, one exciting thing that happened today was Aimee's nose ran for the first time... EVER. Also, she has been breathing partly through her nose today! Success in that area already!
The meh news:
She is having a really hard time with drainage from the surgery site down her throat. Coughing and constantly chocking on it when she is awake.
Her temperature has been fluctuating between a low fever and a low body temperature. I don't know what to make of that.
She has been sleeping a lot today, which is great. She needs it! But, when she is awake, she is uncomfortable and moaning continually. Not sure if it is pain or if she is confused by the sensation/ability to breath through her nose.
Praying for a restful night with less choking tonight. We all need it!
4.24.13 Post Surgery
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| Daddy carrying Aimee back to surgery. |
Thrilled as we are to hold her and to try to get some sleep with her, it meant going into yesterday in a less than ideal condition. Aimee was energetic though. :)
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| Tilly bear had his own bracelet. |
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| Sleeping in the recovery room on oxygen. |
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| Perking up in her sunlit room. |
We kept a close eye on her through the night. It was a long night, but we were at least at home. She definitely is still having some difficulty with her breathing. We are fairly certain the main cause is drainage from the surgery site. She is gagging on it constantly and thus we are limited in fluids and food intake. The doctor said it will take 8 weeks to completely heal and not to evaluate results until after that point. The good news is, she doesn't seem to be having a lot of pain from the surgery itself.
It may be a long rest of the week, but we are happy to fight that battle from our own living room. Thank you to everyone who prayed, texted, called, and facebooked us. We so value all of the prayers and love for Aimee.
Please pray for:
-the drainage to slow so that we can increase fluid intake for hydration and calories
-continued low pain
-rest! For Aimee and for me! Okay, and for Ed too. :)
4.22.13
Check in for Aimee's nasal surgery is tomorrow at 8:25am. Prayers for protection under anesthesia, normal wake up, no prolonged seizures, and smooth recovery appreciated. Nervous momma right here.
4.10.13 The Unsought Gift
No one requests this gift.
No one day dreams of their baby being disabled.
No one asks for the reward of limitations.
I was lent a book recently by Aimee's vision teacher called 'Adam: God's Beloved' by Henri J. M. Nouwen. Her teacher said that reading it reminded her so much of Aimee and how she has always seen her as such a pure angel.
The book is by a Catholic priest who spent much of his life writing and teaching on spirituality. In his late years, he pastored a community of handicapped individuals and spent 14 months participating in the care if a disabled man named Adam. The experience changed his view of himself and his view of God. Although Adam could not speak, walk independently, and suffered from seizures, he became a mentor to this wise man. Although many would only see the many needs and thus the burden of caring for Adam, the author began to see the sacredness of the person. He writes:
"Adam was sent to bring Good News to the world. It was his mission, as it was the mission of Jesus. Adam was -- very simply, quietly, and uniquely -- there! He was a person, who by his very life announced the marvelous mystery of our God: I am precious, beloved, whole, and born of God. Adam bore silent witness to this mystery, which has nothing to do with whether or not he could speak, walk, or express himself, whether or not he made money, had a job, was fashionable, famous, married or single. It had to do with his being. He was and is a beloved child of God. It is the same news that Jesus came to announce, and it is the news that all those who are poor keep proclaiming in and through their very weakness. Life is a gift. Each one of us is unique, known by name, and loved by the One who fashioned us. Unfortunately, there is a very loud, consistent, and powerful message coming to us from our world that leads us to believe that we must prove our belovedness by how we look, by what we have, and by what we can accomplish. We become preoccupied with 'making it' in this life, and we are very slow to grasp the liberating truth of our origins and our finality. We need to hear the message announced and see the message embodied, over and over again. Only then do we find the courage to claim it and to live from it."
Truthfully, I cried about 12 times while reading this book the other day. Partly, because of Adam's passing at the end of the book. I may have squeezed Aimee a little tighter and cried over her. I also cried, because of the beauty of being lovable when one is completely empty. The message that is lived out by those who have nothing tangible to offer the world and instead seem to be a burden only.
We live full lives. We measure our successes and feel confidence or happiness based upon our abilities. Though we may not consciously think it, we commonly value ourselves based on what we can do. We don't even know ourselves beyond the deeds and items that surround us. We are known for these things. We are afraid of our weak areas and ashamed when we cannot do what we see others able to do. We may honestly look at ourselves and see nothing worth loving after we are stripped bare of our good deeds, our talents, and our strengths. Some may see a severely disabled person in the same way. What is there to do but take care of them? They are automatically empty where we are full of any activity we can conjure up.
It is in this emptiness that the truth lies. We are all broken, whether visibly disabled or invisibly faulted. The truth of divine love reaches past ability, beyond our pursuits, to our true value. You are valuable and precious. Not because of your talents. Not because of your wise decisions. Not because of your selflessness.
I am proud of my daughter. Not because she learned faster, got better grades, talked earlier, always obeyed, never lied. I am proud of HER. And this same way, you are beloved. Always you are loved, beloved of God, as Aimee is loved. Just as you are, just as a person with visible or invisible disabilities. In Aimee's brokenness and inability, she is whole. When we are able to let go, empty ourselves of all these pursuits, we too can be made full. Even when we have nothing to show for ourselves, we are beloved. Not in spite of our weakness, not because of our strengths. Simply, we are made uniquely, creatively, wholly His own.
This is the message, the gift that Aimee's very being communicates from the heart of God. The gift of being in relationship with an individual who is completely reliant on others for care is the peace, the confidence in knowing you are valuable. We can freely receive this gift of seeing what we would be when completely emptied of everything we could bring to the table, of seeing that we would still be loved. In this way, the disabled person, who seems broken and empty from our perspective, is actually whole. The gift that they give us is healing and completeness beyond our abilities.
By accepting this message, we are accepting the unsought gift. No, this is not the gift I asked for or wanted. I never wanted to have a child who could not have accomplishments or do good deeds. I don't want to look into Aimee's eyes and wonder how long I get to be her mom. Yet, what I most want for my children, Aimee has. She knows she is loved and she shares her message freely. It is the priceless gift I have been given, the gift Aimee has been entrusted, and the gift that I can share with you. I will be always thankful for the unsought gift Aimee brings in her immense weakness and in her astounding strength of spirit.
No one day dreams of their baby being disabled.
No one asks for the reward of limitations.
I was lent a book recently by Aimee's vision teacher called 'Adam: God's Beloved' by Henri J. M. Nouwen. Her teacher said that reading it reminded her so much of Aimee and how she has always seen her as such a pure angel.
The book is by a Catholic priest who spent much of his life writing and teaching on spirituality. In his late years, he pastored a community of handicapped individuals and spent 14 months participating in the care if a disabled man named Adam. The experience changed his view of himself and his view of God. Although Adam could not speak, walk independently, and suffered from seizures, he became a mentor to this wise man. Although many would only see the many needs and thus the burden of caring for Adam, the author began to see the sacredness of the person. He writes:
"Adam was sent to bring Good News to the world. It was his mission, as it was the mission of Jesus. Adam was -- very simply, quietly, and uniquely -- there! He was a person, who by his very life announced the marvelous mystery of our God: I am precious, beloved, whole, and born of God. Adam bore silent witness to this mystery, which has nothing to do with whether or not he could speak, walk, or express himself, whether or not he made money, had a job, was fashionable, famous, married or single. It had to do with his being. He was and is a beloved child of God. It is the same news that Jesus came to announce, and it is the news that all those who are poor keep proclaiming in and through their very weakness. Life is a gift. Each one of us is unique, known by name, and loved by the One who fashioned us. Unfortunately, there is a very loud, consistent, and powerful message coming to us from our world that leads us to believe that we must prove our belovedness by how we look, by what we have, and by what we can accomplish. We become preoccupied with 'making it' in this life, and we are very slow to grasp the liberating truth of our origins and our finality. We need to hear the message announced and see the message embodied, over and over again. Only then do we find the courage to claim it and to live from it."
Truthfully, I cried about 12 times while reading this book the other day. Partly, because of Adam's passing at the end of the book. I may have squeezed Aimee a little tighter and cried over her. I also cried, because of the beauty of being lovable when one is completely empty. The message that is lived out by those who have nothing tangible to offer the world and instead seem to be a burden only.
We live full lives. We measure our successes and feel confidence or happiness based upon our abilities. Though we may not consciously think it, we commonly value ourselves based on what we can do. We don't even know ourselves beyond the deeds and items that surround us. We are known for these things. We are afraid of our weak areas and ashamed when we cannot do what we see others able to do. We may honestly look at ourselves and see nothing worth loving after we are stripped bare of our good deeds, our talents, and our strengths. Some may see a severely disabled person in the same way. What is there to do but take care of them? They are automatically empty where we are full of any activity we can conjure up.
It is in this emptiness that the truth lies. We are all broken, whether visibly disabled or invisibly faulted. The truth of divine love reaches past ability, beyond our pursuits, to our true value. You are valuable and precious. Not because of your talents. Not because of your wise decisions. Not because of your selflessness.
I am proud of my daughter. Not because she learned faster, got better grades, talked earlier, always obeyed, never lied. I am proud of HER. And this same way, you are beloved. Always you are loved, beloved of God, as Aimee is loved. Just as you are, just as a person with visible or invisible disabilities. In Aimee's brokenness and inability, she is whole. When we are able to let go, empty ourselves of all these pursuits, we too can be made full. Even when we have nothing to show for ourselves, we are beloved. Not in spite of our weakness, not because of our strengths. Simply, we are made uniquely, creatively, wholly His own.
This is the message, the gift that Aimee's very being communicates from the heart of God. The gift of being in relationship with an individual who is completely reliant on others for care is the peace, the confidence in knowing you are valuable. We can freely receive this gift of seeing what we would be when completely emptied of everything we could bring to the table, of seeing that we would still be loved. In this way, the disabled person, who seems broken and empty from our perspective, is actually whole. The gift that they give us is healing and completeness beyond our abilities.
By accepting this message, we are accepting the unsought gift. No, this is not the gift I asked for or wanted. I never wanted to have a child who could not have accomplishments or do good deeds. I don't want to look into Aimee's eyes and wonder how long I get to be her mom. Yet, what I most want for my children, Aimee has. She knows she is loved and she shares her message freely. It is the priceless gift I have been given, the gift Aimee has been entrusted, and the gift that I can share with you. I will be always thankful for the unsought gift Aimee brings in her immense weakness and in her astounding strength of spirit.
4.6.13 The Corner Of My Eye
One of Aimee's favorite places to be right now is in her play room on an old crib mattress. When she kicks her feet she gets a nice feedback bounce from the mattress. Plus, there some great objects in that play room, though the jingle bells are the winner for sure. Yesterday, I climbed in her playroom with her for a bit and Aimee thought this was hysterical. She has a tendency to laugh when a routine is done differently than she is used to it being done. This shows up a lot when she is with an alternate caregiver, like at school, where the nurse might pick her up out of her chair differently than we do it at home. We are excited to be noticing this increase in awareness of differences more and more lately. How incredible it is for her to acknowledge my presence in her play space!
Another way she has become more aware is visually. When we do vision therapy with her it is in controlled environments that optimize her ability. Typically, this is a very dark space with no windows for conflicting light. We then use a light box to illuminate high contrast, moving patterns and objects. However, just lately, she has been noticing us with brief glances out of the corner of her eye, where she sees best. We are seeing this corner of the eye phenomenon occur when we hold her/lay next to her outside of the controlled environment. She still uses the sound of voice and maybe even smell of individuals to primarily identify them, but using her vision in this small way is a wonderful venture forward into new territory. Hooray Aimee!
Prayer request:
Please pray for Aimee to be protected from sickness. We were hoping to venture out tomorrow, taking her to church wearing a mask, for the first time in a few months. Unfortunately, Caleb has gotten a cough and fever for the first time in his little life this week. I am doing my best to protect Aimee, but it is hard to keep a sweet boy from his sissy when he continually tries to snuggle with her.
4.3.13 Turbinate Reduction
We met with Otolaryngology yesterday. After two unsuccessful attempts at correcting Aimee's chronic eye infections and blocked tear ducts with Opthalmology (tear duct probe and stint procedure and topical steroid spray), we were referred to meet with Otolaryngology to discuss option C. After reviewing Aimee's situation the doctor felt that it would be best to proceed with doing a turbinate reduction in her nasal passages, steriod injection, and most likely do an adenoidectomy at the same time. The turbinates help to moisten and warm the air that you breath. They are often reduced in allergy patients due to swelling. In Aimee's case, it seems that her nasal passage has become increasingly narrow as she has grown. Her adenoids were only somewhat enlarged when her last x-ray was done by Pulmonary 18 months ago, but the doctor thought that they had most likely increased in size and are a contributing factor to her issues.
The hope is that by reducing the size of the surrounding tissue pressure will be relieved on the tear ducts where they enter the nose. Opening up her nasal passage may also help relieve some of her difficulty with sleep apnea (not all most likely since she will still have hypoventilation due to her low tone) and allow her to breath through her nose (mostly obstructed). May even reduce ear infections. Although we only know she has an ear infection when the drum ruptures and bleeds, so we are only for sure that she has had two.
All in all, the doctor feels that the procedure will benefit Aimee, although he did stress that it may not relieve her continual eye infections. I am very hopeful that it will, because option D involves restructuring her tear ducts and potentially adjusting facial structure. As always, going under anesthesia is a bit nerve wracking, but at least we know the drill! As long as she stays well, she is scheduled with the surgery center for the 23rd.
The hope is that by reducing the size of the surrounding tissue pressure will be relieved on the tear ducts where they enter the nose. Opening up her nasal passage may also help relieve some of her difficulty with sleep apnea (not all most likely since she will still have hypoventilation due to her low tone) and allow her to breath through her nose (mostly obstructed). May even reduce ear infections. Although we only know she has an ear infection when the drum ruptures and bleeds, so we are only for sure that she has had two.
All in all, the doctor feels that the procedure will benefit Aimee, although he did stress that it may not relieve her continual eye infections. I am very hopeful that it will, because option D involves restructuring her tear ducts and potentially adjusting facial structure. As always, going under anesthesia is a bit nerve wracking, but at least we know the drill! As long as she stays well, she is scheduled with the surgery center for the 23rd.
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