...and why do all these professionals keep telling me she's going to be tall?
I'm gonna be wearing HER clothes when she's 7!
I'm gonna be wearing HER clothes when she's 7!
Showing posts with label Doctor. Show all posts
Showing posts with label Doctor. Show all posts
Monday, August 02, 2010
Check, check, check-up
At the beginning of August, Emily had her 4-year well-child visit. She did great. Dr. M is so good with her and even though she wailed like a banshee when she got her 4 vaccinations, she still hi-5'd everyone on the way out of the office.
Saturday, July 10, 2010
Tiptoe through the tulips
We had an interesting phone call earlier this week.
Em's last botox injection was on March 17. At her follow-up appointment on April 15, Dr. Kaitz was thrilled with her progress. So much so that she asked us to skip Em's next botox injection on June 23 and since she was outgrowing her braces, we could also skip out on wearing those and getting a bigger pair made until we knew more at her next check up on July 26, which brings us to our phone call earlier this week.
Nationwide Children's Hospital in Columbus is really good about calling their patients to remind them of appointments and touching base when necessary schedule changes arise. This particular call has me a little concerned for several reasons. The call was to let us know that our appointment with Dr. Kaitz has been canceled and rescheduled for September because Dr. Kaitz is out on medical leave. My first thought was worry for Dr. Kaitz... we love her! Our appointment for September has been scheduled with a different doctor that we've never seen in the office before.
We're going to keep the September appointment and play it out but I have my concerns.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28
And, in other news...
...we've been doing a lot of this lately!
Take care and be blessed!
Em's last botox injection was on March 17. At her follow-up appointment on April 15, Dr. Kaitz was thrilled with her progress. So much so that she asked us to skip Em's next botox injection on June 23 and since she was outgrowing her braces, we could also skip out on wearing those and getting a bigger pair made until we knew more at her next check up on July 26, which brings us to our phone call earlier this week.
Nationwide Children's Hospital in Columbus is really good about calling their patients to remind them of appointments and touching base when necessary schedule changes arise. This particular call has me a little concerned for several reasons. The call was to let us know that our appointment with Dr. Kaitz has been canceled and rescheduled for September because Dr. Kaitz is out on medical leave. My first thought was worry for Dr. Kaitz... we love her! Our appointment for September has been scheduled with a different doctor that we've never seen in the office before.
We're going to keep the September appointment and play it out but I have my concerns.
- Emily has started coming back up on tiptoes this past week. It probably means she's had yet another growth spurt but it also means that the results of the botox are probably wearing off too. We're going to need to boost the amount of stretching we've been doing with her to hopefully keep the tiptoeing from getting worse before her appointment.
- It feels like we're going to be starting all over again since our new doctor hasn't seen Emily's progress this past year. I'm praying that Dr. Kaitz has made detailed notes on Em's records and noted the amount of motion we've been able to get previously.
- We're worried about Dr. Kaitz and are keeping her in our prayers.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28
And, in other news...
...we've been doing a lot of this lately!
Take care and be blessed!
Thursday, April 15, 2010
Botox Follow-up
(NOTE: there are 2 new posts today... there's another one right after this that covers the last couple of months and has lots of pictures!)
Last month, on St. Patty's Day nonetheless, Emily received another series of botox injections in her calves. For those of you new to the blog, Emily has been getting these every 3 months for the past year or so. Emily is almost 4 years old and has cerebral palsy. Her version of cerebral palsy causes her to leg muscles to tighten up and she walks on her tiptoes as a result. The botox is used to weaken the tight muscles and she wears leg braces (DAFOs and AFOs) on her calves and feet to keep her from going up on her tiptoes and to help retrain her muscles. She also wears a similar brace that we call a "night brace" on her left leg. It is more padded and able to be adjusted so she can get more stretch in her heel cord while she sleeps and her leg is relaxed. There are pictures of these and a better description in this old post from last July.
Sooo... Em's been wearing her braces every day for the most part since the end of September '09.
We are always scheduled to go back to Children's Hospital 3 weeks after her botox injections because that is when the results will peak and we can see how well it's working. Our doctor was very excited by our last visit a few months ago and was very excited again today to see how well Em is doing.
As I've mentioned before, Emily's doctor is in a wheelchair and has an assist dog, named Travis. It works out great because at each visit, Emily gets to walk down the hall to the doctor's office to get Travis and then gets to take him for a walk down the hall a few times. She's more focused on the dog than working her runway walk so we get a better idea of how she's really walking when she's not thinking about it.
Today, I opted to let Em wear her dress shoes and bring her braces in a bag instead of having her wear them. She stayed flat-footed nearly the whole time and popped up on her toes only a little bit when she was excited to see Travis. When we took her shoes and socks off, it also looked like she was starting to use the muscles in her feet correctly.
Dr. Kaitz is happy with the results and has given us good news for the next several months. Emily has grown quite a bit since she was initially fitted for her braces and Dr. Kaitz is worried that they are starting to get tight on her. Instead of getting fitted for new braces right away, Dr. Kaitz would like us to stop using them for the next 3 months AND skip the next botox injection and see how she does. She feels that as long as we keep stretching and flexing Em's legs and ankles that we might not need shots or braces any more. She also mentioned that we need to make sure we're getting a really good stretch on her heel cords because she's starting to get the beginnings of a bunion on one foot which I believe she said is the result of an arch falling and a tight heel cord.
Only time will tell! When I asked about continuing PT twice a week, she smiled again said that was overkill and that we could drop back to once a week. We will check with our physical therapist for her opinion as well since she is also working on getting her whole body working smoothly together (trunk rotation, spinal mobility, shoulders, wrists, etc.)
Needless to say, we are really pumped about this news and Emily is pumped about no more shots! We're going to keep working hard and our hope is that in 3 months we still have the same, if not even better news.
(Don't forget... there's another post after this one... with pictures!)
Last month, on St. Patty's Day nonetheless, Emily received another series of botox injections in her calves. For those of you new to the blog, Emily has been getting these every 3 months for the past year or so. Emily is almost 4 years old and has cerebral palsy. Her version of cerebral palsy causes her to leg muscles to tighten up and she walks on her tiptoes as a result. The botox is used to weaken the tight muscles and she wears leg braces (DAFOs and AFOs) on her calves and feet to keep her from going up on her tiptoes and to help retrain her muscles. She also wears a similar brace that we call a "night brace" on her left leg. It is more padded and able to be adjusted so she can get more stretch in her heel cord while she sleeps and her leg is relaxed. There are pictures of these and a better description in this old post from last July.
Sooo... Em's been wearing her braces every day for the most part since the end of September '09.
We are always scheduled to go back to Children's Hospital 3 weeks after her botox injections because that is when the results will peak and we can see how well it's working. Our doctor was very excited by our last visit a few months ago and was very excited again today to see how well Em is doing.
As I've mentioned before, Emily's doctor is in a wheelchair and has an assist dog, named Travis. It works out great because at each visit, Emily gets to walk down the hall to the doctor's office to get Travis and then gets to take him for a walk down the hall a few times. She's more focused on the dog than working her runway walk so we get a better idea of how she's really walking when she's not thinking about it.
Today, I opted to let Em wear her dress shoes and bring her braces in a bag instead of having her wear them. She stayed flat-footed nearly the whole time and popped up on her toes only a little bit when she was excited to see Travis. When we took her shoes and socks off, it also looked like she was starting to use the muscles in her feet correctly.
Dr. Kaitz is happy with the results and has given us good news for the next several months. Emily has grown quite a bit since she was initially fitted for her braces and Dr. Kaitz is worried that they are starting to get tight on her. Instead of getting fitted for new braces right away, Dr. Kaitz would like us to stop using them for the next 3 months AND skip the next botox injection and see how she does. She feels that as long as we keep stretching and flexing Em's legs and ankles that we might not need shots or braces any more. She also mentioned that we need to make sure we're getting a really good stretch on her heel cords because she's starting to get the beginnings of a bunion on one foot which I believe she said is the result of an arch falling and a tight heel cord.
Only time will tell! When I asked about continuing PT twice a week, she smiled again said that was overkill and that we could drop back to once a week. We will check with our physical therapist for her opinion as well since she is also working on getting her whole body working smoothly together (trunk rotation, spinal mobility, shoulders, wrists, etc.)
Needless to say, we are really pumped about this news and Emily is pumped about no more shots! We're going to keep working hard and our hope is that in 3 months we still have the same, if not even better news.
(Don't forget... there's another post after this one... with pictures!)
Tuesday, January 05, 2010
Another Botox Follow-Up
We ventured down to Children's Hospital again yesterday afternoon for Emily's botox follow-up appointment and I am happy to say that we finally had a VERY encouraging visit with the doctor. This appointment was with our "new" doctor, Dr. K. We've usually had very good experiences with our visits to Children's but this is the first time that any of Em's doctors have been really pumped (almost giddy) at the progress she's seen.
Dr. K watched Em take her (Dr. K's) assistance dog, Travis, for a walk, we took the braces off, she flexed Em's feet/ankles and had her walk again. It was nice to finally see a doctor's face light up with excitement at how well the treatment was working. I was told that her left foot is finally within normal range and her right foot is better than normal range. Dr. K said that if we can stay on this track the future could look very good.
We also talked about a few other things like how to make the injection appointments a little more tolerable for Em and how to get a little more stretch in her hamstrings since she's not able to get a restful sleep with her knee immobilizer (knee brace) on.
We are going to try sticking to the regular AFO's (day braces) and adding the knee immobilizer at nap time and then having her wear her DAFO (night brace) at night time.
Emily has major issues with being confined (i.e., being held down for shots, getting caught in blankets while sleeping, getting hung up in shirts while getting dressed) and she immediately panics and starts fussing and screaming. Needless to say (but I'm going to say it anyway) I'm looking forward to being able to sleep a little better at night now that we don't have to wake up to her crying for us to take her knee brace off. (We've only been able to make it 1-2 hours any given night when we've tried to get her to wear it.)
Dr. K was thrilled with Em's progress and as a parent, it was great to hear Dr. K say that she loved ending her day with Em since she was so much fun and kept her laughing. Not all of her patients are so amiable. She said that just by observing Em she could tell that she's very intelligent and watching her made her want to adopt.
We left with a very good feeling... and then spent a little over 2 hours (during rush hour and snow/ice) making the 45 minute drive home.... but I digress. ;-)
Ok, folks (and that means you!) I've used enough "( )" (parentheses) and improper grammar today and my editor friends and family are ready to strangle me. Have a great day! (Bye!)
Dr. K watched Em take her (Dr. K's) assistance dog, Travis, for a walk, we took the braces off, she flexed Em's feet/ankles and had her walk again. It was nice to finally see a doctor's face light up with excitement at how well the treatment was working. I was told that her left foot is finally within normal range and her right foot is better than normal range. Dr. K said that if we can stay on this track the future could look very good.
We also talked about a few other things like how to make the injection appointments a little more tolerable for Em and how to get a little more stretch in her hamstrings since she's not able to get a restful sleep with her knee immobilizer (knee brace) on.
We are going to try sticking to the regular AFO's (day braces) and adding the knee immobilizer at nap time and then having her wear her DAFO (night brace) at night time.
Emily has major issues with being confined (i.e., being held down for shots, getting caught in blankets while sleeping, getting hung up in shirts while getting dressed) and she immediately panics and starts fussing and screaming. Needless to say (but I'm going to say it anyway) I'm looking forward to being able to sleep a little better at night now that we don't have to wake up to her crying for us to take her knee brace off. (We've only been able to make it 1-2 hours any given night when we've tried to get her to wear it.)
Dr. K was thrilled with Em's progress and as a parent, it was great to hear Dr. K say that she loved ending her day with Em since she was so much fun and kept her laughing. Not all of her patients are so amiable. She said that just by observing Em she could tell that she's very intelligent and watching her made her want to adopt.
We left with a very good feeling... and then spent a little over 2 hours (during rush hour and snow/ice) making the 45 minute drive home.... but I digress. ;-)
Ok, folks (and that means you!) I've used enough "( )" (parentheses) and improper grammar today and my editor friends and family are ready to strangle me. Have a great day! (Bye!)
Monday, November 02, 2009
Surprise(s)!
Surprise #1: (Note - I just posted 3 entries tonight for this past week...)
I had to leave work a little early this afternoon to take Emily to an appointment at Children's Hospital. This was a simply brace follow-up and Tom had rearranged his day so he could go down to meet with our new doctor with us. We rushed home and collected everything we needed for the afternoon and while I was getting ready to head out the door I noticed my voicemail message light was blinking.
Surprise #2: A quick check of the message revealed that our doctor wasn't feeling well and left work earlier in the afternoon and we would have to reschedule our appointment. I called to reschedule the appointment for a few weeks out and we went ahead and picked Emily up early and headed out of town for a family evening out.
Surprise #3: A new wing has been added on to the mall that we like to visit and a Dave & Busters is included in that wing. I don't know that we've talked about it much on the blog, but Emily is very sensitive to loud noises. She can't stand vacuum cleaners, loud music, noisy toilets and air dryers, whistles, buzzers, car horns, loud mufflers or engines on cars/trucks, etc. so we were pretty sure she would freak out the minute we opened the door. We opened the door, stepped inside and paused for a moment to ask Emily if she thought it was too loud or if it she wanted to eat there. It didn't even phase her and she said she wanted to eat there. The meal was great and in the midst of a mid-meal potty break Em discovered there were lots of games on the way to the restroom!
To our surprise, Emily couldn't wait to finish her supper so she could show Daddy all the games that she found! Not only did she show him the games that we noticed on the fringe, but she walked through the entire game floor showing her Daddy all the blinking lights and noisy games... and Daddy helped her win a few game tickets to boot! It seems silly, but I was almost as proud tonight as I was when she started trying to take her first steps. We were still afraid of the scary automatic toilets tonight, but this feels like a giant step forward.
I had to leave work a little early this afternoon to take Emily to an appointment at Children's Hospital. This was a simply brace follow-up and Tom had rearranged his day so he could go down to meet with our new doctor with us. We rushed home and collected everything we needed for the afternoon and while I was getting ready to head out the door I noticed my voicemail message light was blinking.
Surprise #2: A quick check of the message revealed that our doctor wasn't feeling well and left work earlier in the afternoon and we would have to reschedule our appointment. I called to reschedule the appointment for a few weeks out and we went ahead and picked Emily up early and headed out of town for a family evening out.
Surprise #3: A new wing has been added on to the mall that we like to visit and a Dave & Busters is included in that wing. I don't know that we've talked about it much on the blog, but Emily is very sensitive to loud noises. She can't stand vacuum cleaners, loud music, noisy toilets and air dryers, whistles, buzzers, car horns, loud mufflers or engines on cars/trucks, etc. so we were pretty sure she would freak out the minute we opened the door. We opened the door, stepped inside and paused for a moment to ask Emily if she thought it was too loud or if it she wanted to eat there. It didn't even phase her and she said she wanted to eat there. The meal was great and in the midst of a mid-meal potty break Em discovered there were lots of games on the way to the restroom!
To our surprise, Emily couldn't wait to finish her supper so she could show Daddy all the games that she found! Not only did she show him the games that we noticed on the fringe, but she walked through the entire game floor showing her Daddy all the blinking lights and noisy games... and Daddy helped her win a few game tickets to boot! It seems silly, but I was almost as proud tonight as I was when she started trying to take her first steps. We were still afraid of the scary automatic toilets tonight, but this feels like a giant step forward.
Saturday, September 26, 2009
Another Botox Follow-Up & Braces
(Note to Facebook friends: Please click on the title and it will take you to our Blog site where you can read the whole story but can also dig into the archives and read about and see pictures of our whole adoption from Kazakhstan story!)
Emily had a botox follow-up appointment on Wednesday morning and Tom was able to join us for this one. As usual, we mentally prepped Em for what was going to happen and assured her there would be no shots! She is definitely getting more comfortable going in for her appointments these days. Since this was her daddy's first opportunity to join us for this type of appointment she took charge and showed him the ropes.
She was so full of confidence and even had an extra little spring in her step. When her name was called she marched right ahead of us, followed the nurse back to the exam room and announced to her that there would be "No Shots!" on this fine day. Right away she started asking me for her crayons. (We always take crayons along so she can draw and color on the table paper!) She carried on a pretty good conversation with one of the nurses and then hung out with us in the exam room for a little over an hour before the doctor finally came in.
I'll preface this next paragraph by saying that Emily had an excellent visit and did great the entire time. She responded to all the doctor's requests with calm self-confidence and I was so proud of her. However, I was not so proud of our doctor.
Dr. B came in over an hour after we went into the exam room. She talked very briefly with us and then worked with Emily and checked the range of the flexibility of her ankles. Emily did great and allowed her to stretch and bend her ankles.
The doctor was not impressed that Emily's range of motion didn't seem to be improving. She can barely get her right leg/foot into a 90° bend and her left leg/foot is about 7° away from getting into a 90° bend... I think she called a -7° or something like that. The doctor seemed a little frustrated or baffled or something.
The conversation then just started to get odd. She asked me if we had ever considered serial casting and that is something that we might have to consider. However, if you refer to this post from March you'll see that serial casting is something that we had been told we might need to do all along and then you'll also kindly note that it was Dr. B that told us Emily would NOT be a candidate because she was too "aggressive". Grrrr. So, yes, we had considered serial casting and our physical therapist and I actually pushed Dr. B to consider it because stretching wasn't doing the job.
Dr. B asked me to show her how we've been stretching Emily and proceeded to tell me that we've been doing it all wrong and showed us how we should be doing it. (No problem there. I appreciate constructive criticism, but didn't appreciate the accusing way in which she said it.) She mentioned that she would probably be increasing the dose for the next botox again. And then, she asked me what we knew of Emily's birth history. I told her we really didn't know anything other than the initial diagnoses she was given (and with Russian medical mindset, she had a whole list of diagnoses, most of which are very common in newborns). I told her off the top of my head I didn't remember what any of them were but that they should be in Em's paperwork because I brought it all in with me on our first visit and they made copies. At that point, the conversation got a little more odd.
The doctor asked me if we had ever had an MRI done on Emily's back/spine. (The answer was no.) At that point, she made a comment about her login to the computerized medical records being messed up and she couldn't get into the system. After joking that maybe they were telling her to just go home she left the room.... I assumed she was going to the nurses station to have one of them log in and pull Emily's records. BUT SHE NEVER CAME BACK!
A nurse came back in the room and handed us the wrap-up paperwork that listed our next appointment. Tom and I just looked at each other. Neither of us had any inkling that we were "done" with our conversation... it was almost like the doctor left in mid-thought.
Regardless, we were already not impressed with our visit that day and we were semi-okay with being done. We stopped at the front desk on the way out and set up our next appointment for mid-October and promptly asked if there are other doctors there that do the same thing as Dr. B. Out of only about 4-5 visits, Dr. B has already had 2 major strikes and 1 minor one in my book. I was hoping to give her the benefit of the doubt and chalked it up to having a bad day. However, if this is our batting record, I can't afford for Emily (and us) to keep dealing with "bad days".
We WILL return to Nationwide Children's Hospital (I am highly impressed with NCH) but we WILL NOT be returning to this doctor. It's not a good fit and we have to do what is best for Emily.
* * * * *
In other news, we heard a couple of days ago that Emily's new braces are ready and we have an appointment scheduled for Monday morning to be introduced to them. I imagine they will do a fitting and tweak them as necessary but I'll post more after that appointment to let you know how it went!
Emily had a botox follow-up appointment on Wednesday morning and Tom was able to join us for this one. As usual, we mentally prepped Em for what was going to happen and assured her there would be no shots! She is definitely getting more comfortable going in for her appointments these days. Since this was her daddy's first opportunity to join us for this type of appointment she took charge and showed him the ropes.
She was so full of confidence and even had an extra little spring in her step. When her name was called she marched right ahead of us, followed the nurse back to the exam room and announced to her that there would be "No Shots!" on this fine day. Right away she started asking me for her crayons. (We always take crayons along so she can draw and color on the table paper!) She carried on a pretty good conversation with one of the nurses and then hung out with us in the exam room for a little over an hour before the doctor finally came in.
I'll preface this next paragraph by saying that Emily had an excellent visit and did great the entire time. She responded to all the doctor's requests with calm self-confidence and I was so proud of her. However, I was not so proud of our doctor.
Dr. B came in over an hour after we went into the exam room. She talked very briefly with us and then worked with Emily and checked the range of the flexibility of her ankles. Emily did great and allowed her to stretch and bend her ankles.
The doctor was not impressed that Emily's range of motion didn't seem to be improving. She can barely get her right leg/foot into a 90° bend and her left leg/foot is about 7° away from getting into a 90° bend... I think she called a -7° or something like that. The doctor seemed a little frustrated or baffled or something.
The conversation then just started to get odd. She asked me if we had ever considered serial casting and that is something that we might have to consider. However, if you refer to this post from March you'll see that serial casting is something that we had been told we might need to do all along and then you'll also kindly note that it was Dr. B that told us Emily would NOT be a candidate because she was too "aggressive". Grrrr. So, yes, we had considered serial casting and our physical therapist and I actually pushed Dr. B to consider it because stretching wasn't doing the job.
Dr. B asked me to show her how we've been stretching Emily and proceeded to tell me that we've been doing it all wrong and showed us how we should be doing it. (No problem there. I appreciate constructive criticism, but didn't appreciate the accusing way in which she said it.) She mentioned that she would probably be increasing the dose for the next botox again. And then, she asked me what we knew of Emily's birth history. I told her we really didn't know anything other than the initial diagnoses she was given (and with Russian medical mindset, she had a whole list of diagnoses, most of which are very common in newborns). I told her off the top of my head I didn't remember what any of them were but that they should be in Em's paperwork because I brought it all in with me on our first visit and they made copies. At that point, the conversation got a little more odd.
The doctor asked me if we had ever had an MRI done on Emily's back/spine. (The answer was no.) At that point, she made a comment about her login to the computerized medical records being messed up and she couldn't get into the system. After joking that maybe they were telling her to just go home she left the room.... I assumed she was going to the nurses station to have one of them log in and pull Emily's records. BUT SHE NEVER CAME BACK!
A nurse came back in the room and handed us the wrap-up paperwork that listed our next appointment. Tom and I just looked at each other. Neither of us had any inkling that we were "done" with our conversation... it was almost like the doctor left in mid-thought.
Regardless, we were already not impressed with our visit that day and we were semi-okay with being done. We stopped at the front desk on the way out and set up our next appointment for mid-October and promptly asked if there are other doctors there that do the same thing as Dr. B. Out of only about 4-5 visits, Dr. B has already had 2 major strikes and 1 minor one in my book. I was hoping to give her the benefit of the doubt and chalked it up to having a bad day. However, if this is our batting record, I can't afford for Emily (and us) to keep dealing with "bad days".
We WILL return to Nationwide Children's Hospital (I am highly impressed with NCH) but we WILL NOT be returning to this doctor. It's not a good fit and we have to do what is best for Emily.
* * * * *
In other news, we heard a couple of days ago that Emily's new braces are ready and we have an appointment scheduled for Monday morning to be introduced to them. I imagine they will do a fitting and tweak them as necessary but I'll post more after that appointment to let you know how it went!
Friday, September 25, 2009
Oh No She Di'nt!
A few days ago we were killing time waiting for a doctor to come into the exam room [more on that later]. After nearly an hour, we broke into a challenging game of "I Spy". You know, the one that starts with, "I spy with my little eye something gray!" Without missing a beat, our little cherub immediately ran over to me and pointed to my hair!
Oh no she di'nt!
Oh no she di'nt!
Friday, September 11, 2009
A Glance at Emily's Last Few Weeks
After a very nice, and quite subtle hint (ahem), I've been informed that I've neglected to update our blog over the past couple of weeks. I humbly apologize. School started shortly after our last entry and we've had a flurry of activity during the days and nights since then. Enough excuses... here's what you've been waiting for.
The first picture has absolutely nothing to do with Emily except that I took it on my way home from work and was about 15 minutes away from picking her up. Luckily, I was heading into the blue skies and away from those extremely dark clouds that were in my side mirror. We got a bit of rain that night, but nothing compared to what those clouds looked like they could have produced!
A few days later, I caught Miss Em daydreaming while watching TV and holding a lovely green marker to her cheek and LIPS.
She was a little concerned when she noticed that her hands were green from wiping her face...
But she royally freaked out when I showed her what she looked like in the mirror. It was the first time I've ever seen her run AWAY from a mirror! Thank goodness it was a Washable Crayola Marker! We even had to run her tongue over the washcloth a few times before it was pink again!
A few more days after that and Emily couldn't wait to come home and help me make supper. I put her in charge of making the salad. She makes a mean lettuce shredder and was very proud of her work!
Last Wednesday, it was time for Botox: Round 4. At weigh-in, she's now a whopping 33.5 lbs and 39 inches tall. She was friendly and chipper until the syringe came out, screamed and thrashed around like a banshee and then high-fived the doctors and all the child wranglers. It's exhausting for me, but it's becoming a quarterly norm. As promised, Em was granted ice cream as her reward for being brave. Nobody wears chocolate quite like Em!
A few days after botox/ice cream day we went to Saturday in the Park and listened to our friends Keith and Jessica sing. We made a quick loop through the park, made a tie-dyed t-shirt and went to Columbus to meet Ryan for supper and to kick off our weekend.
All that running can wear a girl out. Well, that and emptying your bookshelves and rearranging all your toys when you're supposed to be sleeping. Then, it finally came.... crash!
On a side note: All the red tape has finally been cut through, our BCMH AND insurance approvals finally came through and Emily went in this afternoon to get casts made for her braces to be made from. With the help of a movie from home, she handled it pretty well. She was pretty cooperative until the scissors came out to cut off the lightweight casts. They said it will probably be about 3 weeks before the new braces will be ready for her to try on.
And finally, for your storytime pleasure... Here's Emily reading your bedtime story: "Snow White". Enjoy. (Don't worry, she's teasing me the first few seconds of the story...)
The first picture has absolutely nothing to do with Emily except that I took it on my way home from work and was about 15 minutes away from picking her up. Luckily, I was heading into the blue skies and away from those extremely dark clouds that were in my side mirror. We got a bit of rain that night, but nothing compared to what those clouds looked like they could have produced!
A few days later, I caught Miss Em daydreaming while watching TV and holding a lovely green marker to her cheek and LIPS.
She was a little concerned when she noticed that her hands were green from wiping her face...
But she royally freaked out when I showed her what she looked like in the mirror. It was the first time I've ever seen her run AWAY from a mirror! Thank goodness it was a Washable Crayola Marker! We even had to run her tongue over the washcloth a few times before it was pink again!
A few more days after that and Emily couldn't wait to come home and help me make supper. I put her in charge of making the salad. She makes a mean lettuce shredder and was very proud of her work!
Last Wednesday, it was time for Botox: Round 4. At weigh-in, she's now a whopping 33.5 lbs and 39 inches tall. She was friendly and chipper until the syringe came out, screamed and thrashed around like a banshee and then high-fived the doctors and all the child wranglers. It's exhausting for me, but it's becoming a quarterly norm. As promised, Em was granted ice cream as her reward for being brave. Nobody wears chocolate quite like Em!
A few days after botox/ice cream day we went to Saturday in the Park and listened to our friends Keith and Jessica sing. We made a quick loop through the park, made a tie-dyed t-shirt and went to Columbus to meet Ryan for supper and to kick off our weekend.
All that running can wear a girl out. Well, that and emptying your bookshelves and rearranging all your toys when you're supposed to be sleeping. Then, it finally came.... crash!
On a side note: All the red tape has finally been cut through, our BCMH AND insurance approvals finally came through and Emily went in this afternoon to get casts made for her braces to be made from. With the help of a movie from home, she handled it pretty well. She was pretty cooperative until the scissors came out to cut off the lightweight casts. They said it will probably be about 3 weeks before the new braces will be ready for her to try on.
And finally, for your storytime pleasure... Here's Emily reading your bedtime story: "Snow White". Enjoy. (Don't worry, she's teasing me the first few seconds of the story...)
Tuesday, June 30, 2009
Today at Children's Hospital
Emily had another botox follow-up appointment today at Children's Hospital. Our last several appointments have been a bit traumatic for Emily and she's getting to an age now where she understands what's going on and what's going to be happening.
Last week I started giving her a heads-up that she was going to be meeting with Dr. B. I simply told her that we were going to visit her again and that she wouldn't be getting any shots this time and then I carried on a dialogue from there and answered any questions she had as we talked.
This weekend I mentioned it one or two more times and then yesterday, I started telling her every step of what was going to happen at this visit.... Emily would be staying at my mom's in the morning and then I would pick Emily and Grandma (Nanny) up after Emily's nap and take them for a long drive to visit the doctor. We would play for a little bit until they called her name and probably our friend, Renee, would take us back and weigh her and measure her. It wasn't going to hurt and it was just like getting weighed at home and she would be measured just like Em's buddy, Miranda, measured her height the other day. After that, we'd go sit in our special room where we could read books, play, and color until Dr. B. came in. We'd probably take our shoes off while we were waiting (because Dr. B likes to feel her feet and ankles without her shoes on and Emily REALLY prefers to keep her shoes on) and Dr. B could help put her shoes back on before it was time to leave. I would talk with Dr. B for a bit and then if Emily was really nice during her visit and let the doctors and nurses do everything they needed to do that we would go for ice cream afterwards.
Today, I'm praising God that with lots of prayers and preparation everything went as planned!
Emily marched back when we were called and walked straight into the first room and right over to the scale. As soon as Renee said she had the numbers, she told Em she didn't need to get her height today. Em walked out of the room like the confident little girl that she is and walked right into her exam room and proceeded to help me dig her books and crayons out of our bag. The nurses came and went and all of our shoes came off as we played in the room barefoot. A new doctor came into the room, admired Em's drawings and played with her a bit before asking some questions and then she very smoothly played with Emily on the exam table and tested her range of motion in her ankles and legs while I distracted her with "This Little Piggie Went To Market". So far, Em's scored an A+ for cooperation during her exam!
After a few minutes Dr. A left the room to confer with Dr. B. (Seriously, those are their initials -- convenient, huh?!?) They both came back into the room a little while later and Dr. B graciously eased her way onto the scene. Emily continued to play the part of the perfect patient and cooperated with all of their requests!
Overview of the adult conversations:
1) The botox injections only seemed to work for the first couple of weeks after they were given and then Emily went through at least one growth spurt that really limited the end results.
2) Emily still has extremely high muscle tone in both legs, but especially the left.
3) Emily doesn't mind doing activities in PT and at home to work on mild stretches of the muscles, but she really doesn't like us to hold onto her legs, knees or ankles to help stretch them.
4) Emily's stance and gait (the way she walks) has started to change more over the past year because she's grown and she's finding other way to do what she needs to do. She walks on tiptoes ALL the time unless we remind her to "walk with flat feet". She stands with her feet farther apart than normal and her knees are starting to turn inward. (This is typical of kids with cerebral palsy.)
5) It appears that Em's physical therapist and Dr's A & B are now finally all in agreement that it's time to put Em in braces to help train her legs/knees/feet into the right positions.
6) We took home prescriptions for three different braces... yeah, I know, she's only got two legs, right?!?! I don't know all the details yet but will know more after we see our physical therapist at our next appointment. My understanding at the moment is that there is a brace for the right leg, a different kind of brace for her left leg (because it's tighter and needs a different type of correction) and another type of brace for her to wear on her left leg at bedtime.
7) The benefit of having a prescription for the braces is that we can work with our therapist's team to have the braces made and tweaked... right in Marion... in the same building where we have therapy instead of having to drive back and forth to Columbus for that.
Our next appointment with Dr. B is 8 weeks from now and it's a follow-up to see how the braces are working. A couple of weeks after that, we'll have another botox appointment and then three weeks after that we'll have another botox follow-up appointment like we did today.
Hopefully the end results at that time are better and Emily will have another A+/Ice Cream Reward appointment!
Oh, and by the way, Emily DID earn her ice cream today and she chose to get ice cream at Bob Evans on our way home. (Yeah, I know that comes as a big surprise to some of you!) Yes, it was supper time and yes, she had ice cream -- and a few bites of blueberry bread, applesauce and some milk -- for supper. But ice cream was her main course! Hey, I promised. I couldn't help that her appointment was over at supper time!
Thanks for the continued prayers and be blessed!
Last week I started giving her a heads-up that she was going to be meeting with Dr. B. I simply told her that we were going to visit her again and that she wouldn't be getting any shots this time and then I carried on a dialogue from there and answered any questions she had as we talked.
This weekend I mentioned it one or two more times and then yesterday, I started telling her every step of what was going to happen at this visit.... Emily would be staying at my mom's in the morning and then I would pick Emily and Grandma (Nanny) up after Emily's nap and take them for a long drive to visit the doctor. We would play for a little bit until they called her name and probably our friend, Renee, would take us back and weigh her and measure her. It wasn't going to hurt and it was just like getting weighed at home and she would be measured just like Em's buddy, Miranda, measured her height the other day. After that, we'd go sit in our special room where we could read books, play, and color until Dr. B. came in. We'd probably take our shoes off while we were waiting (because Dr. B likes to feel her feet and ankles without her shoes on and Emily REALLY prefers to keep her shoes on) and Dr. B could help put her shoes back on before it was time to leave. I would talk with Dr. B for a bit and then if Emily was really nice during her visit and let the doctors and nurses do everything they needed to do that we would go for ice cream afterwards.
Today, I'm praising God that with lots of prayers and preparation everything went as planned!
Emily marched back when we were called and walked straight into the first room and right over to the scale. As soon as Renee said she had the numbers, she told Em she didn't need to get her height today. Em walked out of the room like the confident little girl that she is and walked right into her exam room and proceeded to help me dig her books and crayons out of our bag. The nurses came and went and all of our shoes came off as we played in the room barefoot. A new doctor came into the room, admired Em's drawings and played with her a bit before asking some questions and then she very smoothly played with Emily on the exam table and tested her range of motion in her ankles and legs while I distracted her with "This Little Piggie Went To Market". So far, Em's scored an A+ for cooperation during her exam!
After a few minutes Dr. A left the room to confer with Dr. B. (Seriously, those are their initials -- convenient, huh?!?) They both came back into the room a little while later and Dr. B graciously eased her way onto the scene. Emily continued to play the part of the perfect patient and cooperated with all of their requests!
Overview of the adult conversations:
1) The botox injections only seemed to work for the first couple of weeks after they were given and then Emily went through at least one growth spurt that really limited the end results.
2) Emily still has extremely high muscle tone in both legs, but especially the left.
3) Emily doesn't mind doing activities in PT and at home to work on mild stretches of the muscles, but she really doesn't like us to hold onto her legs, knees or ankles to help stretch them.
4) Emily's stance and gait (the way she walks) has started to change more over the past year because she's grown and she's finding other way to do what she needs to do. She walks on tiptoes ALL the time unless we remind her to "walk with flat feet". She stands with her feet farther apart than normal and her knees are starting to turn inward. (This is typical of kids with cerebral palsy.)
5) It appears that Em's physical therapist and Dr's A & B are now finally all in agreement that it's time to put Em in braces to help train her legs/knees/feet into the right positions.
6) We took home prescriptions for three different braces... yeah, I know, she's only got two legs, right?!?! I don't know all the details yet but will know more after we see our physical therapist at our next appointment. My understanding at the moment is that there is a brace for the right leg, a different kind of brace for her left leg (because it's tighter and needs a different type of correction) and another type of brace for her to wear on her left leg at bedtime.
7) The benefit of having a prescription for the braces is that we can work with our therapist's team to have the braces made and tweaked... right in Marion... in the same building where we have therapy instead of having to drive back and forth to Columbus for that.
Our next appointment with Dr. B is 8 weeks from now and it's a follow-up to see how the braces are working. A couple of weeks after that, we'll have another botox appointment and then three weeks after that we'll have another botox follow-up appointment like we did today.
Hopefully the end results at that time are better and Emily will have another A+/Ice Cream Reward appointment!
Oh, and by the way, Emily DID earn her ice cream today and she chose to get ice cream at Bob Evans on our way home. (Yeah, I know that comes as a big surprise to some of you!) Yes, it was supper time and yes, she had ice cream -- and a few bites of blueberry bread, applesauce and some milk -- for supper. But ice cream was her main course! Hey, I promised. I couldn't help that her appointment was over at supper time!
Thanks for the continued prayers and be blessed!
Saturday, June 13, 2009
A Bit Distracted Lately
I apologize to our fan club... we've been a bit distracted lately.
Two weeks ago Emily started to get a little tickle in her throat. I got an early call from her babysitter saying that she was really warm (cheeks like tomatoes) and was extra tired and had a cough. Whatever she had - she shared with me a few days later. That weekend I tried fixing her supper while she was watching TV... but,s when supper was finally ready and dished out on our plates, this is what I found...
If I'm remembering correctly, she slept here from about 6pm until 8:30pm. I fed her a little supper, let her play for a while until Tom came home from his church meeting and then she went right back to sleep around 9:30 or so and slept until morning.
Last week, Em had her 3rd set of botox injections at children's hospital. I started preparing her for them that morning and told her that she was going to be seeing the doctor and that she was going to get 2 shots. She would also need to hold really still and if she did it would go faster. My mom went with us to help hold Em down so I could talk to her and attempt to comfort her. If you remember this post you'll recall that our last visit to children's didn't go over so well. I made a point to let the nurse know our concerns and asked that Dr. B. please make sure she spend some extra time with Em before she just starts working with her and that it traumatized Em for over a month afterwards. The nurse made the note in Em's record and I figured that would be the end of that. Surprise! Within 2 hours of my chat with the nurse, I received a call from Dr. B. at home. She was very genuine and apologized for any problems our previous visit caused and that she must have been having a bad day, etc., etc. I was very surprised she called and it really felt like she understood what happened and would try to see that it doesn't happen again. Our next appointment for a follow-up is in a couple of weeks... we'll see how it goes!
On the way home from children's I set up an appointment for Em to see her pediatrician because she was still having "issues"... runny nose, cough, ear aches and a new dark circles under her eyes with goop thrown in for good measure. Once again, I prepped her for the appointment and assured her there would be no shots this time... the doctor was simply going to help her eyes, ears, nose, throat, etc. to feel better. Emily was a champ. The only struggle we had was the death grip she put on her carseat while I was trying to get her out of the car. I carried her inside to the elevator and from there something changed and she was an angel. When I signed her in, I let them know that she had a bit of "White Coat Syndrome" and they picked up the clue and let all the folks know that would be dealing with her. She ACTUALLY ALLOWED THEM to weigh her, take her temperature, listen to her heart, look in her ears, nose, eyes and throat. She was the picture of the perfect patient. I have no idea what changed, but I keep bragging about it in front of her hoping for a little positive reinforcement. (A mom can hope, right?) The final diagnosis... Emily was dealing with allergies and had a mild "smoldering ear infection" that would easily be cleared up with a little Zyrtec and Amoxycillin. So far, they've worked wonders!
Last week, Tom spent quite a few days/evenings at the house on the church property getting it ready for our new worship leader and his family to move in. I was able to chip in partway through the week to do some trimming and painting. I helped out over the weekend and again some more this week.
We were greeted by this lovely face on Saturday morning when we went to start painting the living room... I believe this is Keith's artwork. (The white parts of the eyes are actually open port holes from the living room to one of the bedrooms... with the bottoms of water bottles painted for the pupils!)
Amidst the doctor appointments, sickies, painting and work, Tom and I decided to tackle putting together Em's new playset on Wednesday. Armed with the instruction book, some chalk and a plethora of power tools, we set to task.
We started around 9:30 A.M., took a lunch break at the G&R and then kept working and I think we wrapped up around 9:30 P.M. We had a good time working on the project and are marriage is still intact. Bonus points for that, eh?
Tonight we finally had some quality time to spend on the playset and Miss Em seems to be a big fan already.
Oh yeah, and on top of all that other stuff we've been adding a new porch onto the front of our house. Well, "we" haven't but we've hired someone to do it for us. Playset construction is about as advanced as we get! This week, Emily's been thrilled with "new roof!" and "mine steps!"
Two weeks ago Emily started to get a little tickle in her throat. I got an early call from her babysitter saying that she was really warm (cheeks like tomatoes) and was extra tired and had a cough. Whatever she had - she shared with me a few days later. That weekend I tried fixing her supper while she was watching TV... but,s when supper was finally ready and dished out on our plates, this is what I found...
If I'm remembering correctly, she slept here from about 6pm until 8:30pm. I fed her a little supper, let her play for a while until Tom came home from his church meeting and then she went right back to sleep around 9:30 or so and slept until morning.
Last week, Em had her 3rd set of botox injections at children's hospital. I started preparing her for them that morning and told her that she was going to be seeing the doctor and that she was going to get 2 shots. She would also need to hold really still and if she did it would go faster. My mom went with us to help hold Em down so I could talk to her and attempt to comfort her. If you remember this post you'll recall that our last visit to children's didn't go over so well. I made a point to let the nurse know our concerns and asked that Dr. B. please make sure she spend some extra time with Em before she just starts working with her and that it traumatized Em for over a month afterwards. The nurse made the note in Em's record and I figured that would be the end of that. Surprise! Within 2 hours of my chat with the nurse, I received a call from Dr. B. at home. She was very genuine and apologized for any problems our previous visit caused and that she must have been having a bad day, etc., etc. I was very surprised she called and it really felt like she understood what happened and would try to see that it doesn't happen again. Our next appointment for a follow-up is in a couple of weeks... we'll see how it goes!
On the way home from children's I set up an appointment for Em to see her pediatrician because she was still having "issues"... runny nose, cough, ear aches and a new dark circles under her eyes with goop thrown in for good measure. Once again, I prepped her for the appointment and assured her there would be no shots this time... the doctor was simply going to help her eyes, ears, nose, throat, etc. to feel better. Emily was a champ. The only struggle we had was the death grip she put on her carseat while I was trying to get her out of the car. I carried her inside to the elevator and from there something changed and she was an angel. When I signed her in, I let them know that she had a bit of "White Coat Syndrome" and they picked up the clue and let all the folks know that would be dealing with her. She ACTUALLY ALLOWED THEM to weigh her, take her temperature, listen to her heart, look in her ears, nose, eyes and throat. She was the picture of the perfect patient. I have no idea what changed, but I keep bragging about it in front of her hoping for a little positive reinforcement. (A mom can hope, right?) The final diagnosis... Emily was dealing with allergies and had a mild "smoldering ear infection" that would easily be cleared up with a little Zyrtec and Amoxycillin. So far, they've worked wonders!
Last week, Tom spent quite a few days/evenings at the house on the church property getting it ready for our new worship leader and his family to move in. I was able to chip in partway through the week to do some trimming and painting. I helped out over the weekend and again some more this week.
We were greeted by this lovely face on Saturday morning when we went to start painting the living room... I believe this is Keith's artwork. (The white parts of the eyes are actually open port holes from the living room to one of the bedrooms... with the bottoms of water bottles painted for the pupils!)
Amidst the doctor appointments, sickies, painting and work, Tom and I decided to tackle putting together Em's new playset on Wednesday. Armed with the instruction book, some chalk and a plethora of power tools, we set to task.
We started around 9:30 A.M., took a lunch break at the G&R and then kept working and I think we wrapped up around 9:30 P.M. We had a good time working on the project and are marriage is still intact. Bonus points for that, eh?
Tonight we finally had some quality time to spend on the playset and Miss Em seems to be a big fan already.
Oh yeah, and on top of all that other stuff we've been adding a new porch onto the front of our house. Well, "we" haven't but we've hired someone to do it for us. Playset construction is about as advanced as we get! This week, Emily's been thrilled with "new roof!" and "mine steps!"
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