Tessa's surgery for tubes and her CT scan are scheduled for next Wednesday, December 8th. We will be heading to the hospital around 9:00 that morning and the surgery is at 11:00 a.m. We are praying for a quick recovery and the beginning of healthier days!
Whitney
Tuesday, November 30, 2010
Sunday, November 21, 2010
Just Some Life Information
I figured I'd take some time and share some things about our life. I think for the most part it's all just becoming so normal to us, so I tend to forget how abnormal it actually kinda is....which is definitely a blessing. My thoughts will probably be a little random, but they are the kinds of things I have considered sharing off-and-on over the last several months, and tonight decided I might as well!
The similarities of a 4 month old and our 7 1/2 month old:
There was a sweet couple that sat in front of us at church this morning with an adorable baby girl. I took a minute to say hello to the family after the service and asked about their daughter. Her name was Vivien and she was 4 months old. Darin and I had sat and watched her interact with her mother during the service and all of her movements and behaviors were very similar to Tessa's. She was a little bigger than Tessa, but they looked and acted a lot the same. I felt bad, because I know I made it a little uncomfortable for them when they asked about Tessa and I had to tell them she was 7 1/2 months. It's funny though, because Tessa's hearing aids have become a form of self-explanation and we have learned to be thankful for that. I remember a mother of a grown son who had his own brain damage diagnosis as a toddler, said the best advice she could give us, would be to never compare Tessa to anyone around her...to celebrate her milestones and to celebrate the precious little angel God made her to be. I've told people on many occassions: it's not that I have expectations for Tessa's timeline....I just really want her to have a timeline and have progress in her own way and own timing! I think our observations of little Vivien today were more from a 'therapy' standpoint than a comparsion standpoint. We are learning so much about babies' development in general in our weekly physical therapy sessions, that we are more sensitive to the progression of babies and their early development in life. It is incredible to realize the things that our children learn to do so naturally...things we never even thought about with Parker.
One of our current physical therapy focuses:
This last Thursday, Miss Melody (our PT) wanted us to start working again with Tessa and her little hands. It has been difficult to work steadily with her because she has been so sick lately...so she has started making her tight fists again. Melody pointed out to us how sweaty her hands were and how when she tried to open them up flat they "blanched white". For a while, we were noticing Tessa, more and more, with her hands opened and relaxed laying flat, but she has started closing them up tight again and it's just something we are going to have to work on more with her. I rolled up some really long/skinny burp cloths and tied them in a loose knot. Then I slipped her little hand into them so that her fingers curl up around the rolled cloth and her thumb wraps down around it. Just one way we can help her learn to keep them open. A little therapy tidbit: if babies don't learn to open their hands, they have a very difficult time ever learning to sit up. This has been one of the first obvious signs of the spastic cerebral palsy that Tessa is dealing with. If babies can't flex their wrists and flatten their hands then they can't find the balance it takes to sit up on their own. So, we are working with Tessa's hands :)
Conversation with a man at the car place:
Saturday morning we had to take the Honda to the shop to get the brakes checked out. While we were all in the waiting area, a sweet older man asked about Tessa's hearing aids. Right now I can't remember exactly how he initiated the conversation, but he asked how she was doing with them and if everything was okay with her. It's funny, because I always tend to default to "well, actually she was recently diagnosed with severe brain damage, but she's doing good." What's funny about that is, Tessa's hearing loss doesn't have a darn thing to do with her brain damage, but it's just one of those things you wonder 'where do I start!' :) Do I say, "well, actually we found out 3 months ago that I got a virus while I was pregnant with her, that most of the population has already had by the age of 28, but since I hadn't had it and got it for the first time while I was pregnant, the virus ended up depositing calcium on Tessa's brain and not only does the virus attack the brain but it also attacks the eyes and ears." Yeah, I don't think that rolls off the tongue as well :) Maybe one of these days I'll learn a better response....working on it! But anyway, he really was a sweet man, he told me that she was just beautiful and if it hadn't of been for the hearing aids he wouldn't have noticed anything about her...that she was just perfect.
Isolation can be the worst part:
I am so appreciative when people ask. If there is anything I feel like I've said over and over again to the people closest in my life, it's that the isolation of our situation is probably the worst part of it all. There will always be people that will stare and there will always be people that will judge, but we love the times when we come across those people that choose to have a conversation with us about our daughter. I can imagine how intimidating it would be to broach a subject that you know nothing about. I was there, I was that person...I had never been exposed to the world of children with special needs.
My sisters were at a pumkin patch together with their kids several weeks ago and they were texting me that they had come across a family with 4 year old twin boys with what they believed to be a form of cerebral palsy. My sisters had some extra tickets for the train ride and thought it was so neat when they came across this family and were able to share the tickets with them. Both of the boys used walkers to get around and the train ride was really the only thing at the park that they were able to participate in. After they gave them the tickets, my sister texted me back and said she hoped they saw them again before they left the park, except she wasn't exactly sure what they would say to them. I texted her back and said "just say something!" :) We love to talk about our children just as much as anyone else wants to talk about theirs. We know you may not understand everything that we talk about, but the compassion that we feel, that you are willing to ask, is so precious. Parent's of special needs children are forced to learn the things that we never imagined learning. We totally acknowledge the information gap because we have spent that much time closing our own gaps in order to give our children the best chance in life possible. If your approach to a family with a child with special needs is one of compassion....I believe with all of my heart that there is NOTHING you could say that would be wrong. We understand that you don't understand. Our exhaustion throughout the learning process is our guarantee of that! Besides, the more you ask me, the more opportunities I'll have to fine-tune my response to inquiries about my own daughter ;) I would never wish what has happened to Tessa on anyone....but that does not mean that I don't rejoice in milestones met by all the other precious children in my life! Tessa's milestones will be different, her milestones will be slower...but her milestones WILL BE CELEBRATED! I know I have no right to try and speak on behalf of all parents' with children with special needs, but I believe speaking my heart with those that are closest to me and sharing our life with those that are interested, could lead to the initiation of conversations that might alleviate some of the isolation! That is why I share and that is why I want to encourage those of you that might wonder "what do I say"...just say something; just ask like the man did at the car shop..." I noticed her hearing aids and was just wondering how she was doing"...compassion is a gift.
~Whitney
The similarities of a 4 month old and our 7 1/2 month old:
There was a sweet couple that sat in front of us at church this morning with an adorable baby girl. I took a minute to say hello to the family after the service and asked about their daughter. Her name was Vivien and she was 4 months old. Darin and I had sat and watched her interact with her mother during the service and all of her movements and behaviors were very similar to Tessa's. She was a little bigger than Tessa, but they looked and acted a lot the same. I felt bad, because I know I made it a little uncomfortable for them when they asked about Tessa and I had to tell them she was 7 1/2 months. It's funny though, because Tessa's hearing aids have become a form of self-explanation and we have learned to be thankful for that. I remember a mother of a grown son who had his own brain damage diagnosis as a toddler, said the best advice she could give us, would be to never compare Tessa to anyone around her...to celebrate her milestones and to celebrate the precious little angel God made her to be. I've told people on many occassions: it's not that I have expectations for Tessa's timeline....I just really want her to have a timeline and have progress in her own way and own timing! I think our observations of little Vivien today were more from a 'therapy' standpoint than a comparsion standpoint. We are learning so much about babies' development in general in our weekly physical therapy sessions, that we are more sensitive to the progression of babies and their early development in life. It is incredible to realize the things that our children learn to do so naturally...things we never even thought about with Parker.
One of our current physical therapy focuses:
This last Thursday, Miss Melody (our PT) wanted us to start working again with Tessa and her little hands. It has been difficult to work steadily with her because she has been so sick lately...so she has started making her tight fists again. Melody pointed out to us how sweaty her hands were and how when she tried to open them up flat they "blanched white". For a while, we were noticing Tessa, more and more, with her hands opened and relaxed laying flat, but she has started closing them up tight again and it's just something we are going to have to work on more with her. I rolled up some really long/skinny burp cloths and tied them in a loose knot. Then I slipped her little hand into them so that her fingers curl up around the rolled cloth and her thumb wraps down around it. Just one way we can help her learn to keep them open. A little therapy tidbit: if babies don't learn to open their hands, they have a very difficult time ever learning to sit up. This has been one of the first obvious signs of the spastic cerebral palsy that Tessa is dealing with. If babies can't flex their wrists and flatten their hands then they can't find the balance it takes to sit up on their own. So, we are working with Tessa's hands :)
Conversation with a man at the car place:
Saturday morning we had to take the Honda to the shop to get the brakes checked out. While we were all in the waiting area, a sweet older man asked about Tessa's hearing aids. Right now I can't remember exactly how he initiated the conversation, but he asked how she was doing with them and if everything was okay with her. It's funny, because I always tend to default to "well, actually she was recently diagnosed with severe brain damage, but she's doing good." What's funny about that is, Tessa's hearing loss doesn't have a darn thing to do with her brain damage, but it's just one of those things you wonder 'where do I start!' :) Do I say, "well, actually we found out 3 months ago that I got a virus while I was pregnant with her, that most of the population has already had by the age of 28, but since I hadn't had it and got it for the first time while I was pregnant, the virus ended up depositing calcium on Tessa's brain and not only does the virus attack the brain but it also attacks the eyes and ears." Yeah, I don't think that rolls off the tongue as well :) Maybe one of these days I'll learn a better response....working on it! But anyway, he really was a sweet man, he told me that she was just beautiful and if it hadn't of been for the hearing aids he wouldn't have noticed anything about her...that she was just perfect.
Isolation can be the worst part:
I am so appreciative when people ask. If there is anything I feel like I've said over and over again to the people closest in my life, it's that the isolation of our situation is probably the worst part of it all. There will always be people that will stare and there will always be people that will judge, but we love the times when we come across those people that choose to have a conversation with us about our daughter. I can imagine how intimidating it would be to broach a subject that you know nothing about. I was there, I was that person...I had never been exposed to the world of children with special needs.
My sisters were at a pumkin patch together with their kids several weeks ago and they were texting me that they had come across a family with 4 year old twin boys with what they believed to be a form of cerebral palsy. My sisters had some extra tickets for the train ride and thought it was so neat when they came across this family and were able to share the tickets with them. Both of the boys used walkers to get around and the train ride was really the only thing at the park that they were able to participate in. After they gave them the tickets, my sister texted me back and said she hoped they saw them again before they left the park, except she wasn't exactly sure what they would say to them. I texted her back and said "just say something!" :) We love to talk about our children just as much as anyone else wants to talk about theirs. We know you may not understand everything that we talk about, but the compassion that we feel, that you are willing to ask, is so precious. Parent's of special needs children are forced to learn the things that we never imagined learning. We totally acknowledge the information gap because we have spent that much time closing our own gaps in order to give our children the best chance in life possible. If your approach to a family with a child with special needs is one of compassion....I believe with all of my heart that there is NOTHING you could say that would be wrong. We understand that you don't understand. Our exhaustion throughout the learning process is our guarantee of that! Besides, the more you ask me, the more opportunities I'll have to fine-tune my response to inquiries about my own daughter ;) I would never wish what has happened to Tessa on anyone....but that does not mean that I don't rejoice in milestones met by all the other precious children in my life! Tessa's milestones will be different, her milestones will be slower...but her milestones WILL BE CELEBRATED! I know I have no right to try and speak on behalf of all parents' with children with special needs, but I believe speaking my heart with those that are closest to me and sharing our life with those that are interested, could lead to the initiation of conversations that might alleviate some of the isolation! That is why I share and that is why I want to encourage those of you that might wonder "what do I say"...just say something; just ask like the man did at the car shop..." I noticed her hearing aids and was just wondering how she was doing"...compassion is a gift.
~Whitney
Sweet Progression
From the very beginning, Parker would light up each time he could hold 'his Tessa' in his arms. The compassion our 26 month old little boy showed his new baby sister, touched our hearts. And just about four months from the very first moment he embraced her in his arms, we would truly understand the divine design of his precious little heart. As parents, it truly is a miracle to witness their amazing connection.
Wednesday, November 17, 2010
Good News Today
We had Tessa's ENT doctor's appointment this afternoon. The great news is that her ruptured eardrum is already healing on its own! She does still have fluid in both of her ears, so we will start another 10 day round of antibiotics this evening, but it sounds like we could be scheduling her surgery for tubes as soon as December 1st! We are thankful that this can happen before the end of the year for financial reasons, but most importantly, because we are so so ready to have a healthy baby girl!
Our auditory therapist suggested yesterday that we ask the doctor if he could schedule a CT scan at the same time as Tessa's surgery for tubes. The scan will be of her temporal bone in order to get a good idea of Tessa's potential for cochlear implants sometime in her future. Since she will already be under anesthesia, it will be a great time to go ahead and get this done too. The doctor did say that he has had plenty of children with hearing aids that have done very well after tubes were put in. We were thankful for that knowledge because it is difficult to think about making a permanent 'implant' decision for Tessa, when all in all, we just want her to be healthy and free of pain. There will be some added maintenance with her hearing aids if she continues getting ear infections after tubes, it will just require removing her hearing aids a few times during the day in order for her ears to be able to drain.
We should know by the end of the week if the 1st is the day. We'll keep everyone posted. Your prayers will be greatly appreciated!
~Whitney
Our auditory therapist suggested yesterday that we ask the doctor if he could schedule a CT scan at the same time as Tessa's surgery for tubes. The scan will be of her temporal bone in order to get a good idea of Tessa's potential for cochlear implants sometime in her future. Since she will already be under anesthesia, it will be a great time to go ahead and get this done too. The doctor did say that he has had plenty of children with hearing aids that have done very well after tubes were put in. We were thankful for that knowledge because it is difficult to think about making a permanent 'implant' decision for Tessa, when all in all, we just want her to be healthy and free of pain. There will be some added maintenance with her hearing aids if she continues getting ear infections after tubes, it will just require removing her hearing aids a few times during the day in order for her ears to be able to drain.
We should know by the end of the week if the 1st is the day. We'll keep everyone posted. Your prayers will be greatly appreciated!
~Whitney
Friday, November 12, 2010
Enough is Enough
Darin took Tessa on Monday to get new ear mold impressions done and the fluid checked in her ears. They weren't able to do the impressions because it appeared that her left eardrum had ruptured.
Tessa's ENT doctor was out of the office all week, but the audiologist was able to get us some antibiotic ears drops to use until we could get Tessa in to see the doctor. Tessa has had some really rough moments over the last week, but I tell you what, she's a little trooper! We just hate this for her and can't even imagine the kind of pain she is going through. On top of EVERYTHING else she has to deal with, I think enough is enough!
We'll go back for auditory/verbal therapy at 4:00 on Tuesday and hopefully be able to get her impressions done at that time. Then Wednesday we will follow up with her ENT doctor at 4:00 and I anticipate that we will go ahead and schedule a date and time for tubes.
It was such a blessing to have just over a week with Tessa's ears free and clear of infection...and we would love to have those kinds of days back. It is so difficult watching her go through so much pain.
Just keep Little Miss Tessa in your prayers over the weekend and this next week. (mommy and daddy could use some rest too after the handful of sleepless nights throughout the week ;)
~Whitney
Tessa's ENT doctor was out of the office all week, but the audiologist was able to get us some antibiotic ears drops to use until we could get Tessa in to see the doctor. Tessa has had some really rough moments over the last week, but I tell you what, she's a little trooper! We just hate this for her and can't even imagine the kind of pain she is going through. On top of EVERYTHING else she has to deal with, I think enough is enough!
We'll go back for auditory/verbal therapy at 4:00 on Tuesday and hopefully be able to get her impressions done at that time. Then Wednesday we will follow up with her ENT doctor at 4:00 and I anticipate that we will go ahead and schedule a date and time for tubes.
It was such a blessing to have just over a week with Tessa's ears free and clear of infection...and we would love to have those kinds of days back. It is so difficult watching her go through so much pain.
Just keep Little Miss Tessa in your prayers over the weekend and this next week. (mommy and daddy could use some rest too after the handful of sleepless nights throughout the week ;)
~Whitney
Sunday, November 7, 2010
Blessings Today & Decisions for Tomorrow
We had some difficult experiences this last week, but I sit here this evening, thankful for the lessons I have learned and reflective on the blessings we have received. I feel like this post is going to be a little all-over-the-place because my heart and mind have been in so many different places over this last week. But here goes :)
Lately, I feel like the blessings that I have experienced have gone hand-in-hand with the softening of my heart. I am learning, in the simplest of things, that the Lord is walking with me and taking care of me. I was able to share this new perspective with my sister Hillarie, a few weeks ago, and she summarized it so beautifully:
"It isn't that God is not blessing us sometimes, it's that our hearts are sometimes not soft enough to acknowledge or even notice the blessing."
There are hardly words to describe the way in which my eyes have been opened to the world of children with special needs. Compared to where I was before, I feel like my eyes are wide open, and yet I know that I still have had such limited exposure to the extent in which children deal with various disabilities. I honestly even catch myself stumbling when speaking the words "mother of a special needs child". It is my reality, and yet, I am still able to come home and have my precious little baby girl laugh and smile at me. I can't even explain the guilt that corresponds with witnessing the severest of diagnosis first hand. We have been given a very difficult string of diagnosis for our precious little Tessa, but we are so blessed.
This week my dad reminded me of Proverbs 3 : 5-6
"(5) Trust in the Lord with all your heart and lean not on your own understanding; (6) in all your ways acknowledge Him, and He will direct your paths." My dad told me he would be preaching a message today emphasising that 'The key to living in God's will is to Believe God.'
Scripture has taken on such new meaning in my life. Proverbs 3 is such an encouraging passage. Tessa's future is full of unknowns, but it isn't anymore of an unknown than my own future. We have been given challenges to overcome now and others to anticipate overcoming in the future. But all we have is today. All we can do is trust the Lord to guide our steps and direct our paths. I'm learning that this is not a passive approach. Trusting the Lord with all your heart requires knowing God and believing His word.
We could not have made it through this week without trusting the Lord to direct our paths. There are entirely too many decisions to make on Tessa's behalf, as her parents. It is impossible to know what will be best beyond today...not knowing what tomorrow holds. Our responsibility as Tessa's parents is not to know or try to predict her future. Our responsibility is to trust the Lord to guide us in loving her, protecting her, caring for her, and giving her what she needs for today and until we are faced with decisions for tomorrow.
I am thankful, humbled and blessed.
~Whitney
Lately, I feel like the blessings that I have experienced have gone hand-in-hand with the softening of my heart. I am learning, in the simplest of things, that the Lord is walking with me and taking care of me. I was able to share this new perspective with my sister Hillarie, a few weeks ago, and she summarized it so beautifully:
"It isn't that God is not blessing us sometimes, it's that our hearts are sometimes not soft enough to acknowledge or even notice the blessing."
There are hardly words to describe the way in which my eyes have been opened to the world of children with special needs. Compared to where I was before, I feel like my eyes are wide open, and yet I know that I still have had such limited exposure to the extent in which children deal with various disabilities. I honestly even catch myself stumbling when speaking the words "mother of a special needs child". It is my reality, and yet, I am still able to come home and have my precious little baby girl laugh and smile at me. I can't even explain the guilt that corresponds with witnessing the severest of diagnosis first hand. We have been given a very difficult string of diagnosis for our precious little Tessa, but we are so blessed.
This week my dad reminded me of Proverbs 3 : 5-6
"(5) Trust in the Lord with all your heart and lean not on your own understanding; (6) in all your ways acknowledge Him, and He will direct your paths." My dad told me he would be preaching a message today emphasising that 'The key to living in God's will is to Believe God.'
Scripture has taken on such new meaning in my life. Proverbs 3 is such an encouraging passage. Tessa's future is full of unknowns, but it isn't anymore of an unknown than my own future. We have been given challenges to overcome now and others to anticipate overcoming in the future. But all we have is today. All we can do is trust the Lord to guide our steps and direct our paths. I'm learning that this is not a passive approach. Trusting the Lord with all your heart requires knowing God and believing His word.
We could not have made it through this week without trusting the Lord to direct our paths. There are entirely too many decisions to make on Tessa's behalf, as her parents. It is impossible to know what will be best beyond today...not knowing what tomorrow holds. Our responsibility as Tessa's parents is not to know or try to predict her future. Our responsibility is to trust the Lord to guide us in loving her, protecting her, caring for her, and giving her what she needs for today and until we are faced with decisions for tomorrow.
I am thankful, humbled and blessed.
~Whitney
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