Monday, December 28, 2009
Unpredictable
Life is very unpredictable. One minute you are driving in your car. The next, you are inside your smashed car talking to rescue workers, praying that the baby inside you is still alive. Dramatic, I know some of you might say, but it is true. It was what I lived. It made me think about life and how I live it.
I think about that fateful morning pretty much every day. I think about the "what ifs". If I didn't crash, would Roa not have cerebral palsy? If I would have stayed home that morning instead of driving to work, nauseated, constipated, and light-headed, would my life be different now? If I had not passed out while driving and made it to the side of the road safely, would I be a different kind of mother to a different kind of little boy?
Bryan tells me not to think about it. I am not to blame. The doctors tell me there is no way of know if the car accident was the cause of Roa's issues. But,.. I still think about it- every day.
I don't want to live a life of "what ifs". I want to surround myself with positive people and live life to its fullest. I want for Roa ALL that is possible including freedom of movement WITHOUT support by another, the ability to SPEAK his mind, the love of a family that is UNCONDITIONAL and WITHOUT JUDGEMENT.
As I sit here, my mother is in the hospital at Mayo Clinic/St. Mary's Hospital. She has a drain in her head relieving her of pressure from built-up fluid. This very second, she is returning to her room after her second angiogram which is determining why there is bleeding on her brain.
Before her severe headache two weekends ago, she officially retired from her job and was ready to enjoy life. Now, she questions her future.
I had a good talk with my mom yesterday about life and how we have choices about how we live it. We choose what is important, what our focus is, how we treat others.
But life is unpredictable and sometimes you have to just deal with the curve balls thrown at you.
I think about that fateful morning pretty much every day. I think about the "what ifs". If I didn't crash, would Roa not have cerebral palsy? If I would have stayed home that morning instead of driving to work, nauseated, constipated, and light-headed, would my life be different now? If I had not passed out while driving and made it to the side of the road safely, would I be a different kind of mother to a different kind of little boy?
Bryan tells me not to think about it. I am not to blame. The doctors tell me there is no way of know if the car accident was the cause of Roa's issues. But,.. I still think about it- every day.
I don't want to live a life of "what ifs". I want to surround myself with positive people and live life to its fullest. I want for Roa ALL that is possible including freedom of movement WITHOUT support by another, the ability to SPEAK his mind, the love of a family that is UNCONDITIONAL and WITHOUT JUDGEMENT.
As I sit here, my mother is in the hospital at Mayo Clinic/St. Mary's Hospital. She has a drain in her head relieving her of pressure from built-up fluid. This very second, she is returning to her room after her second angiogram which is determining why there is bleeding on her brain.
Before her severe headache two weekends ago, she officially retired from her job and was ready to enjoy life. Now, she questions her future.
I had a good talk with my mom yesterday about life and how we have choices about how we live it. We choose what is important, what our focus is, how we treat others.
But life is unpredictable and sometimes you have to just deal with the curve balls thrown at you.
Thursday, December 24, 2009
Holiday Wishes
While Roa is nestled all snug in his bed...
I wanted to send a message to all my blogger friends,
Merry Christmas and Happiest of Holidays to you all!
We are pretty much snowed in here in Minnesota. Boy, did we get a white Christmas!
Roa, Max, Molly, and I played in the fluffy white stuff this morning and now, Roa is tuckered out!
I wanted to send a message to all my blogger friends,
Merry Christmas and Happiest of Holidays to you all!
We are pretty much snowed in here in Minnesota. Boy, did we get a white Christmas!
Roa, Max, Molly, and I played in the fluffy white stuff this morning and now, Roa is tuckered out!
I'm drinking my coffee and waiting for Bryan to get home from his half day of work. I cannot wait to see Roa's face when he opens his gifts tomorrow! The best one from good ole Santa, you ask? A little vaccuum of his own! Here he is helping me with holiday cleaning. Momma's job is gonna get a little easier!
Friday, December 18, 2009
No more AFOs!
We are happy to report that, per Doctor Gormley, Roa no longer had AFOs for feet! Today, Ellen and I went to Winkley Orthotics in Woodbury to have Jason, the Orthotist, trim them down to UCBs! UCBs are basically just a shoe insert for his foot to keep it straight and keep his toes from curling under due to muscle tone. YIPPEE!
Roa is beginning to tolerate a little more time today in the gait trainer. He has absolute NO interest in being in the wheelchair. We are thinking we will give it a try for the trial period, but Roa is going to be a walker-type or pushed in a stroller. Being that powerchairs are approximately $6,000, we will totally work for the walker!
Roa is beginning to tolerate a little more time today in the gait trainer. He has absolute NO interest in being in the wheelchair. We are thinking we will give it a try for the trial period, but Roa is going to be a walker-type or pushed in a stroller. Being that powerchairs are approximately $6,000, we will totally work for the walker!
Thursday, December 17, 2009
Toddler Alert
Today was a day I will call, "Special Delivery Day".
At 10:15am the Reliable Medical Sales Rep. dropped off the powerchair. At 10:17, the mailman brought a early Christmas present from Grandma Patty for Roa. At 12:00pm, Mary, PT, brought a gait trainer for Roa to try. And at 1:15, FedEx brought some Santa gifts I ordered! The doorbell still rings in my head! Ding Dong..
Roa responded to the wheelchair with curiosity. I put him in it and he got a bit angry with all the adjustments of straps and belts I had to do. Once I should him that it moved, he cheered up. The wheelchair is powered by a joystick and Roa was a bit frustrated with trying to move it forward. When operating it independently, he would kinda just go in a circle...backwards. This got old and he fussed to get down.
We then open Grandma Patty's present of snowpants and snowboots. The boots won the popularity contest over the wheelchair in seconds. He wanted them on... NOW! We then spent the rest of the time until Mary arrived walking around the house with Roa laughing with joy at his new black boots!
What can I say? The kid's a walker!
The gait trainer Mary brought is not exactly the right size for Roa, but we will try it until the one ordered from Reliable Medical arrives. Roa didn't get moving in it until I placed a ball in front of him. That set him off, ...kicking as he went! He move directly into the Christmas tree and squealed with delight! As I moved furniture around and out of the way, I thought to myself, Finally, my toddler is getting into things and causing trouble! I LOVE IT!
At 10:15am the Reliable Medical Sales Rep. dropped off the powerchair. At 10:17, the mailman brought a early Christmas present from Grandma Patty for Roa. At 12:00pm, Mary, PT, brought a gait trainer for Roa to try. And at 1:15, FedEx brought some Santa gifts I ordered! The doorbell still rings in my head! Ding Dong..
Roa responded to the wheelchair with curiosity. I put him in it and he got a bit angry with all the adjustments of straps and belts I had to do. Once I should him that it moved, he cheered up. The wheelchair is powered by a joystick and Roa was a bit frustrated with trying to move it forward. When operating it independently, he would kinda just go in a circle...backwards. This got old and he fussed to get down.
We then open Grandma Patty's present of snowpants and snowboots. The boots won the popularity contest over the wheelchair in seconds. He wanted them on... NOW! We then spent the rest of the time until Mary arrived walking around the house with Roa laughing with joy at his new black boots!
What can I say? The kid's a walker!
The gait trainer Mary brought is not exactly the right size for Roa, but we will try it until the one ordered from Reliable Medical arrives. Roa didn't get moving in it until I placed a ball in front of him. That set him off, ...kicking as he went! He move directly into the Christmas tree and squealed with delight! As I moved furniture around and out of the way, I thought to myself, Finally, my toddler is getting into things and causing trouble! I LOVE IT!
Wednesday, December 16, 2009
Positive Appointment!
We had such a good visit at Gillette with Doctor Gormley yesterday! First of all, we didn't have to wait for a super long time as we usually do! This is great as Roa is not very patient, especially in the little exam. room! Also, they remembered us and didn't ask all the same, routine questions about Roa as they have repeated in the past! Nice!
Dr. Gormley is very personable and easy to talk to. He doesn't act rushed and actually listens to all our questions with interest. That is such a blessing as other specialists and the wide variety of pediatricians we have tried look at me coming in with my folder, calendar, and lists of questions/concerns and have that "Oh, no...here we go...too informed and involved mom alert!" look on their face.
Dr. Gormley said that the botox is working beautifully for Roa. He was pleased with his muscle tone in his legs and liked his walking without scissoring skill. We are scheduled in March for his next round of botox that will be similar to this last, but will include his forearms. The doc said that the gait trainer is a great idea now and that Roa looks great walking with support. The powerchair is something to give a try, but he thinks that Roa is a bright kid who will master it and then may give us some grief if we make him try to move without it! But, we said we would do the trial period, get the ball rolling for an order and possibly cancel it if Roa is moving easily with the gait trainer.
The gait trainer we are looking at is called the Rifton Pacer.I attached the picture to give you an idea of how he will move. It won't be available for trial for a few weeks as it needs to be special ordered for Rojo.
I also found a general pic of a power chair. I called Reliable Medical yesterday and found that the chair is being delivered TOMORROW!
Merry Christmas, move the furniture, barricade the tree,.. Rojo will be on the go this holiday!
Dr. Gormley is very personable and easy to talk to. He doesn't act rushed and actually listens to all our questions with interest. That is such a blessing as other specialists and the wide variety of pediatricians we have tried look at me coming in with my folder, calendar, and lists of questions/concerns and have that "Oh, no...here we go...too informed and involved mom alert!" look on their face.
Dr. Gormley said that the botox is working beautifully for Roa. He was pleased with his muscle tone in his legs and liked his walking without scissoring skill. We are scheduled in March for his next round of botox that will be similar to this last, but will include his forearms. The doc said that the gait trainer is a great idea now and that Roa looks great walking with support. The powerchair is something to give a try, but he thinks that Roa is a bright kid who will master it and then may give us some grief if we make him try to move without it! But, we said we would do the trial period, get the ball rolling for an order and possibly cancel it if Roa is moving easily with the gait trainer.
The gait trainer we are looking at is called the Rifton Pacer.I attached the picture to give you an idea of how he will move. It won't be available for trial for a few weeks as it needs to be special ordered for Rojo.
I also found a general pic of a power chair. I called Reliable Medical yesterday and found that the chair is being delivered TOMORROW!
Merry Christmas, move the furniture, barricade the tree,.. Rojo will be on the go this holiday!
Tuesday, December 15, 2009
Over the River and through the woods...off to Gillette!
Roa has his Botox follow-up appointment today at Gillette with Dr. Gormley. At this appointment, we will discuss the affects of the Botox on Roa's motor skills and discuss any changes we have seen, any ideas for the next injections, and set up the next round of botox. On average, children with CP will recieve injections every 3-6 months. We will see what the doctor suggests for Roa.
We have been pleased with the result of the botox in our guy. It has helped him get better sleep by relaxing his muscles, it has helped him sit with more ease and grasp objects without them flying out of his hands. Roa seems to be tighter on the right side than his left but keeps his left thumb in more than his right. We will mention this to the doc to see if it alters the dosing pattern. We will also talk to the doctor about the power chair, gait trainer, trunk support vest, and possible new AFOs ideas brought up by the therapists.
Roa has begun his second week of HBOT at home and is doing fairly well. I know,... I continuely bring up teething, but WOW! I can't believe the molars and canines that are moving into my boy's mouth! It does seem to impact his adjustment to the pressurization of the chamber. We have kept up with Benedryl and I have slowed the pressurization speed on the chamber as Bryan and Roa "go up/down".
Positive effects after a week of HBOT- Roa is once again babbling, "Go", and "baaa" and just making more sounds. He is also wiggly and giggly when placed on the floor after treatment.
Negative effects- Roa is once again waking 6-8 times in the night!! URGGHHH! However, we don't let him nurse every time (we have started a nursing schedule and stick to it!) and Bryan usually goes in and just repositions him. Thankfully though, Roa is waking and babbling and laughing! Not crying and screaming! Guess we gotta take the good with the bad on this one!
We have been pleased with the result of the botox in our guy. It has helped him get better sleep by relaxing his muscles, it has helped him sit with more ease and grasp objects without them flying out of his hands. Roa seems to be tighter on the right side than his left but keeps his left thumb in more than his right. We will mention this to the doc to see if it alters the dosing pattern. We will also talk to the doctor about the power chair, gait trainer, trunk support vest, and possible new AFOs ideas brought up by the therapists.
Roa has begun his second week of HBOT at home and is doing fairly well. I know,... I continuely bring up teething, but WOW! I can't believe the molars and canines that are moving into my boy's mouth! It does seem to impact his adjustment to the pressurization of the chamber. We have kept up with Benedryl and I have slowed the pressurization speed on the chamber as Bryan and Roa "go up/down".
Positive effects after a week of HBOT- Roa is once again babbling, "Go", and "baaa" and just making more sounds. He is also wiggly and giggly when placed on the floor after treatment.
Negative effects- Roa is once again waking 6-8 times in the night!! URGGHHH! However, we don't let him nurse every time (we have started a nursing schedule and stick to it!) and Bryan usually goes in and just repositions him. Thankfully though, Roa is waking and babbling and laughing! Not crying and screaming! Guess we gotta take the good with the bad on this one!
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