Addison's Birthday
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Addison Stavar
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Addison Stavar
Today is Addison's fourth birthday, and praise God, she is here celebrating it.
We started the day with whipped cream and waffles, and ended it with cake and The Little Mermaid. All is right in her four year old world.
In many ways, she is a normal four year old girl. She is interested in Barbies and princesses, and loves cake. She is sweet as can be, and is starting to really embody the wisdom of a four year old. She laughs and sings daily and is always cheerful, and she is witty and observant. She has so many amazing qualities.
People tell me all the time how amazing she is doing, and how far she has come - and she is, and she has, but I still have a hard time receiving those words. I'm always focused on where we aren't - some of that is my wiring - and some of that is my grief, but I've gotten better at least acknowledging those statements, rather than instantly dismissing them, and acknowledging the validity in them - even if they don't reflect the way I feel about her circumstances.
We are still doing five therapy sessions a week - traditional PT on Mondays, CME (Cuevas Medek Exercises (CME) is a specialized pediatric physical therapy designed to treat children with motor delays, such as cerebral palsy or hypotonia, by provoking automatic postural responses against gravity. Developed by Ramon Cuevas, this, often intense, hands-on approach targets children from 3 months old, using over 3,000 exercises to enhance strength, balance, and coordination) on Tuesdays followed by Speech, Equine/OT on Wednesdays, and traditional OT on Thursdays.
It's been a few weeks, but for a while, we were going to the YMCA two mornings a week, and her and Andrew were attending childcare, while I worked out, and she was doing well there. The YMCA is so wonderful at helping her and accomodating her, and it gives me so much peace to know she is well cared for her while I work out.
Addison looks forward to therapy, actually. Every morning we wake up - "who are we playing with today?!". Followed by a "Can we watch Miss Rachel?", "Can we play with the puppets", "Can we play with the doll house"?. She has her routine with each therapist, and she enjoys it and takes it totally in stride.
I drop her off at a few of her therapy sessions, so Andrew and I get some one on one time together shopping at Sprouts or checking out a nearby playground. One of her sessions, he often joins and gets to wander around the room and play with all the toys and sometimes jumps in and copies the exercises Addison does. When we drive out to Dripping Springs for equine therapy, we bask in the Central Texas sun - enjoying the wide open spaces and the Texas breeze while sitting at a picnic table playing with the antique cars they have there. It's by far, my favorite day of our schedule.
She's also still participating in gymnastics on Wednesdays with all of the "normal" kids, and she LOVES it. She cannot take a nap on gymnastics days and asks over and over if it's time to go to gymnastics. Coach Kelly is incredible. Addison expressed a desire to do gymnastics earlier this year, and I didn't skip a beat. I reached out to two places to see if they would evaluate her to see if they would be willing to accomodate her limitations. The first place evaluated her and was overjoyed to have her, and asked me if I would be comfortable with her crawling in between stations, if needed. My answer? Hell yes. She loves it so much, and her body is made for that sport. She does best on the bars - you would never know she couldn't walk when you watch her hang from them and the rings. Her coach holds her hands while she does the balance beam and the tramploline, and she can do all the floor activities on her own. It's comforting for me to see her participating in something that isn't therapy with other kids.
She is so confident about her physical limitations. I teach every other month in her Sunday school class, and there are a couple kids who consistently ask why she can't walk, and why I am helping her, and I tell them - she was in an accident, and her body has to relearn these things. And she proclaims "I'm getting really good at walking!" It's a beautiful thing. What a thing to hold as a mother - to hold your own heartbreak while not putting it onto your child.
Her speech is mostly normal - sometimes when she sings she lags, and when she's tired, you can definitely hear it when she speaks. Her voice is starting to sound more like the voice I remember before the accident - higher pitch then afterwards. Every time I hear a glimpse of it, I smile with hope and relief. If you didn't know she was in an accident, you wouldn't think she had speech issues - you would think her speech was a normal four year olds, but there are definitely some lingering speed issues, which continue to improve.
I think I mentioned that Addison has no hearing in her right ear in one of my earlier updates. We will do a follow up test this summer, and most of the time we cannot even tell, but yesterday Kyle was talking to her and was on the right side of her ear, and she didn't hear, and then when he yelled her name, she responded immediately. I laughed, and Kyle said well, let's get used to more of that. It was the first time we've really seen it in that way. Sometimes, you have to laugh at these things.
We are scheduled to go do a follow up eye exam later this month. We were initially due for a follow up in September, but Kyle has concerns about her ability to see from afar, so we're moving that appointment up.
Last week, Addison was sick all week. I didn't think anything of it, and was thankful to take a break from therapy, but when she started complaining about ear pain and then dizziness, I took her to Dell to make sure she wasn't having any shunt complications. That was awful. They started with CT scans, and she most definitely has PTSD, because I was standing right next to her holding her hand for X Rays, and she was uncontrollably screaming and could not be soothed - even having to lay down to get the pictures done. We ended up getting them done, but it was terrible, and poor Andrew was with us and had to witness the whole thing. I called Kyle to see if he could come do an MRI with her, so he came and attempted that, and apparently it was even worse of a reaction than the CT scan, so after confirming she had a double ear infection, we agreed to monitor her symptoms and table the MRI if they worsened. They didn't, and we think the dizziness may have just stemmed from her ear infection. We will go back for follow up imaging in November, and will make sure to give her drugs for the MRI.
As of right now, we are sticking with our current therapy schedule, indefinitely. The first 18 months after injury are a crucial window for motor skills. I honestly haven't been thinking about making sure we're taking advantage of this window, but it's coming up in conversation more, and now that we're farther away from the accident and looking more towards indefinitely, the 18 month window is making me a bit anxious. I don't think about it on a day to day, because I can't. Most of the times I'm focused on keeping the household running.
Another concern that comes up is "tone" with a brain injury. Here's an AI overview on tone re: brain injury:
Abnormal muscle tone after a brain injury, often known as spasticity or hypertonia, is a common condition where muscles become stiff, tight, and difficult to move due to damaged neural pathways. It often develops within a week of injury, affecting movement and causing pain. Treatment involves rehabilitation, positioning, and medications to improve function and reduce rigidity.
National Institutes of Health (.gov)
We started the day with whipped cream and waffles, and ended it with cake and The Little Mermaid. All is right in her four year old world.
In many ways, she is a normal four year old girl. She is interested in Barbies and princesses, and loves cake. She is sweet as can be, and is starting to really embody the wisdom of a four year old. She laughs and sings daily and is always cheerful, and she is witty and observant. She has so many amazing qualities.
People tell me all the time how amazing she is doing, and how far she has come - and she is, and she has, but I still have a hard time receiving those words. I'm always focused on where we aren't - some of that is my wiring - and some of that is my grief, but I've gotten better at least acknowledging those statements, rather than instantly dismissing them, and acknowledging the validity in them - even if they don't reflect the way I feel about her circumstances.
We are still doing five therapy sessions a week - traditional PT on Mondays, CME (Cuevas Medek Exercises (CME) is a specialized pediatric physical therapy designed to treat children with motor delays, such as cerebral palsy or hypotonia, by provoking automatic postural responses against gravity. Developed by Ramon Cuevas, this, often intense, hands-on approach targets children from 3 months old, using over 3,000 exercises to enhance strength, balance, and coordination) on Tuesdays followed by Speech, Equine/OT on Wednesdays, and traditional OT on Thursdays.
It's been a few weeks, but for a while, we were going to the YMCA two mornings a week, and her and Andrew were attending childcare, while I worked out, and she was doing well there. The YMCA is so wonderful at helping her and accomodating her, and it gives me so much peace to know she is well cared for her while I work out.
Addison looks forward to therapy, actually. Every morning we wake up - "who are we playing with today?!". Followed by a "Can we watch Miss Rachel?", "Can we play with the puppets", "Can we play with the doll house"?. She has her routine with each therapist, and she enjoys it and takes it totally in stride.
I drop her off at a few of her therapy sessions, so Andrew and I get some one on one time together shopping at Sprouts or checking out a nearby playground. One of her sessions, he often joins and gets to wander around the room and play with all the toys and sometimes jumps in and copies the exercises Addison does. When we drive out to Dripping Springs for equine therapy, we bask in the Central Texas sun - enjoying the wide open spaces and the Texas breeze while sitting at a picnic table playing with the antique cars they have there. It's by far, my favorite day of our schedule.
She's also still participating in gymnastics on Wednesdays with all of the "normal" kids, and she LOVES it. She cannot take a nap on gymnastics days and asks over and over if it's time to go to gymnastics. Coach Kelly is incredible. Addison expressed a desire to do gymnastics earlier this year, and I didn't skip a beat. I reached out to two places to see if they would evaluate her to see if they would be willing to accomodate her limitations. The first place evaluated her and was overjoyed to have her, and asked me if I would be comfortable with her crawling in between stations, if needed. My answer? Hell yes. She loves it so much, and her body is made for that sport. She does best on the bars - you would never know she couldn't walk when you watch her hang from them and the rings. Her coach holds her hands while she does the balance beam and the tramploline, and she can do all the floor activities on her own. It's comforting for me to see her participating in something that isn't therapy with other kids.
She is so confident about her physical limitations. I teach every other month in her Sunday school class, and there are a couple kids who consistently ask why she can't walk, and why I am helping her, and I tell them - she was in an accident, and her body has to relearn these things. And she proclaims "I'm getting really good at walking!" It's a beautiful thing. What a thing to hold as a mother - to hold your own heartbreak while not putting it onto your child.
Her speech is mostly normal - sometimes when she sings she lags, and when she's tired, you can definitely hear it when she speaks. Her voice is starting to sound more like the voice I remember before the accident - higher pitch then afterwards. Every time I hear a glimpse of it, I smile with hope and relief. If you didn't know she was in an accident, you wouldn't think she had speech issues - you would think her speech was a normal four year olds, but there are definitely some lingering speed issues, which continue to improve.
I think I mentioned that Addison has no hearing in her right ear in one of my earlier updates. We will do a follow up test this summer, and most of the time we cannot even tell, but yesterday Kyle was talking to her and was on the right side of her ear, and she didn't hear, and then when he yelled her name, she responded immediately. I laughed, and Kyle said well, let's get used to more of that. It was the first time we've really seen it in that way. Sometimes, you have to laugh at these things.
We are scheduled to go do a follow up eye exam later this month. We were initially due for a follow up in September, but Kyle has concerns about her ability to see from afar, so we're moving that appointment up.
Last week, Addison was sick all week. I didn't think anything of it, and was thankful to take a break from therapy, but when she started complaining about ear pain and then dizziness, I took her to Dell to make sure she wasn't having any shunt complications. That was awful. They started with CT scans, and she most definitely has PTSD, because I was standing right next to her holding her hand for X Rays, and she was uncontrollably screaming and could not be soothed - even having to lay down to get the pictures done. We ended up getting them done, but it was terrible, and poor Andrew was with us and had to witness the whole thing. I called Kyle to see if he could come do an MRI with her, so he came and attempted that, and apparently it was even worse of a reaction than the CT scan, so after confirming she had a double ear infection, we agreed to monitor her symptoms and table the MRI if they worsened. They didn't, and we think the dizziness may have just stemmed from her ear infection. We will go back for follow up imaging in November, and will make sure to give her drugs for the MRI.
As of right now, we are sticking with our current therapy schedule, indefinitely. The first 18 months after injury are a crucial window for motor skills. I honestly haven't been thinking about making sure we're taking advantage of this window, but it's coming up in conversation more, and now that we're farther away from the accident and looking more towards indefinitely, the 18 month window is making me a bit anxious. I don't think about it on a day to day, because I can't. Most of the times I'm focused on keeping the household running.
Another concern that comes up is "tone" with a brain injury. Here's an AI overview on tone re: brain injury:
Abnormal muscle tone after a brain injury, often known as spasticity or hypertonia, is a common condition where muscles become stiff, tight, and difficult to move due to damaged neural pathways. It often develops within a week of injury, affecting movement and causing pain. Treatment involves rehabilitation, positioning, and medications to improve function and reduce rigidity.
National Institutes of Health (.gov)
Key Aspects of Tone Changes After Brain Injury
- Spasticity (High Tone): Involuntary muscle tightening, hyperactive reflexes, and stiff muscles at rest, commonly causing clenched fists or rigid limbs.
- Causes: The brain can no longer properly regulate nerve signals, leading to excessive muscle stimulation
We have to massage Addison's feet, ankles, and legs twice a day, and she has started to sleep in Ankle Foot Orthoses (AFOs) are specialized braces designed to support the ankle, hold the foot in proper alignment, and improve walking gait for those with neurological or muscular disorders. We had to sleep in these every night while in the hospital, and have resumed that, because the therapists are concerned about her tone - particularly within this window we're part of. When we massage her, we're looking for her ankles to get to 90 degrees, and sometimes there is stiffness that prevents that. I've noticed a huge difference when I massage the bottoms of her feet in helping with this. We also notice that when she wears her Crocs she wears more easily when walking, than she does when wearing her supportive sandals, so even though we've improved tremendously in balance, walking, and standing, this is still a concern we are assessing daily.
And now for all the small wins - -
-her Equine therapist no longer has to help her pinch close pins when clipping her horses hair
-she can walk from her doorway to her bed by herself and has even started to stop and start on her own
- she is getting really proficient at turning in a circle while on her feet and holding onto something
-she is putting on her shoes by herself again, with some assistance from time to time
- if she has things to hold onto in close enough proximity, she will feel brave enough to walk to it to get around on her own
-she is asking to help again in the kitchen with unloading the dishwasher, washing the dishes and cooking - things are still really heavy for her, but the desire is a huge improvement
- she stands now without realizing it and can even move while standing without falling immediately
- she is able to catch herself with her feet when she loses balance
- she is able to tolerate input from swinging and being thrown around without it throwing off her equilibrium as much
- her speech has drastically improved
- she can hold a pencil correctly
- she sang Part of Your World from The Little Mermaid to the beat tonight
-she can take her ponytail out of her hair
- She can unbuckle the top part of her seatbelt
- She can crawl up the stairs by herself
I'm sure there are many more small things I am missing, but you get the gist - she continues to progress.
Prayer requests would be to
- pray for this next six month window and that we would take advantage of it in whatever way her mind and body need so that she continue towards physical recovery
- that God would guide us in how to address PTSD, even if not now, but as she continues to grow older
- that she would move through life WITHOUT fear as a result of this accident and the therapy and hospital stay
- that she would make a full recovery and have a normal gait
- NO shunt complications - I know they are likely with shunts throughout her lifetime, but after going back to Dell last week, I cannot even bring myself to think about them
- that God would continue to carry us one day at a time with hope, faith, and perserverance
Amen. And Happy 4th birthday to my beautiful baby girl who made me a mama
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