Tuesday, November 30, 2010
NEW NEWS!!!
Within minutes of posting the last message, Paisley's pediatrician called. She had just received the results of the EEG! Paisley now has a NORMAL EEG!!!!! NO EPILEPTIC ACTIVITY!!!!
My busy little bee!
Paisley is 10 months old today and in the past 10 months she has been through a lot. I regularly thank God that we are going to be finished with this terrifying experience before Paisley will remember anything. I pray regularly that this will be the last time Paisley will have to face anything like this.
Well, the ACTH is finished. Last Friday, the day after Thanksgiving, Paisley received her last injection of ACTH. She has been such a brave little girl through this process and has amazed the doctors at how well she has reacted. She had over 60 injections that Gerry and I gave her during the 12 week period. During the first few weeks of the injections her mood was turbulent and her personality was only seen occassionally, but as the dose has been reduced she has gotten to herself. Now that we are 4 days post ACTH, she is doing amazing! She's crawling, babbling and even pulled up in her crib today.
While Paisley has been on ACTH her blood pressure has been monitored on a weekly basis. That means, once a week Paisley and I head to her pediatrician for a quick bp check. ( I must say at this point, if anyone is in our area and looking for a pediatrician ours is great! ) Paisley's bp has flirted with being high the entire time she's been on the ACTH. With babies her age they really only focus on the systolic pressure which has regularly been over 100. Her goal systolic is around 88-90. Last week Paisley had her first consisten bp under 100. She was at 96 last week and this week she was at 94!!!! We'll go for one more bp check next week just to be sure it goes back to normal.
Babies Can't Wait has been to work with Paisley three times now. Now that all of the paperwork is done things seem to be Rockin' and Rollin'. Every week the physical therapist works with Paisley and she does amazing. After Paisley's first appointment the pt wanted Paisley to be able to sit up on her own, she was by the second appointment. At the second appointment she wanted Paisley to start trying to crawl and by the third appointment she was. At the third appointment the pt wanted Paisley to start pulling up and guess what, she pulled up today. Looks like the pt is going to be amazed in the morning. :)
Paisley went for her EEG yesterday. Hopefully it will be her last EEG. I was a little surprised at the place we went to do the EEG. This EEG was done in the neurologist's office instead of the hospital. Being a practice of only pediatric neurologists I would have expected the procedure rooms to be a little more...'baby friendly'. After they got Paisley all wired the tech turned off the lights and asked me if I thought I could get her to sleep. The room was dark yes, but there was a lot of interested medical equipment and a procedure table... How in the world was I to go about getting a 10 months old to sleep? The tech told me I could sit on the table and hold Paisley. I really think that rocking chairs might be a good investment for this practice. Any way, other than my complaints, Paisley did fantastic! She really wanted to be able to touch the wires and didn't like being held down while they were put on and taken off, but she managed to persevere with only a tiny bit of fussing. I was so proud.
We won't get the results of the EEG for a few more days. Please keep Paisley in your prayers as we wait, we're not out of the woods yet.
Thank you all for all of your prayers!!! Your prayers are being answered. Just 12 weeks ago Paisley's prognosis was quite grave and so far she has beaten all odds. I remember the when the doctor came to the hospital room to tell us what was going on with Paisley. He kept watching me as if he were expecting me to totally lose it while he told us that our baby would probably have so many problems. I wish he could see my girl now! Praise God!!!
Well, the ACTH is finished. Last Friday, the day after Thanksgiving, Paisley received her last injection of ACTH. She has been such a brave little girl through this process and has amazed the doctors at how well she has reacted. She had over 60 injections that Gerry and I gave her during the 12 week period. During the first few weeks of the injections her mood was turbulent and her personality was only seen occassionally, but as the dose has been reduced she has gotten to herself. Now that we are 4 days post ACTH, she is doing amazing! She's crawling, babbling and even pulled up in her crib today.
While Paisley has been on ACTH her blood pressure has been monitored on a weekly basis. That means, once a week Paisley and I head to her pediatrician for a quick bp check. ( I must say at this point, if anyone is in our area and looking for a pediatrician ours is great! ) Paisley's bp has flirted with being high the entire time she's been on the ACTH. With babies her age they really only focus on the systolic pressure which has regularly been over 100. Her goal systolic is around 88-90. Last week Paisley had her first consisten bp under 100. She was at 96 last week and this week she was at 94!!!! We'll go for one more bp check next week just to be sure it goes back to normal.
Babies Can't Wait has been to work with Paisley three times now. Now that all of the paperwork is done things seem to be Rockin' and Rollin'. Every week the physical therapist works with Paisley and she does amazing. After Paisley's first appointment the pt wanted Paisley to be able to sit up on her own, she was by the second appointment. At the second appointment she wanted Paisley to start trying to crawl and by the third appointment she was. At the third appointment the pt wanted Paisley to start pulling up and guess what, she pulled up today. Looks like the pt is going to be amazed in the morning. :)
Paisley went for her EEG yesterday. Hopefully it will be her last EEG. I was a little surprised at the place we went to do the EEG. This EEG was done in the neurologist's office instead of the hospital. Being a practice of only pediatric neurologists I would have expected the procedure rooms to be a little more...'baby friendly'. After they got Paisley all wired the tech turned off the lights and asked me if I thought I could get her to sleep. The room was dark yes, but there was a lot of interested medical equipment and a procedure table... How in the world was I to go about getting a 10 months old to sleep? The tech told me I could sit on the table and hold Paisley. I really think that rocking chairs might be a good investment for this practice. Any way, other than my complaints, Paisley did fantastic! She really wanted to be able to touch the wires and didn't like being held down while they were put on and taken off, but she managed to persevere with only a tiny bit of fussing. I was so proud.
We won't get the results of the EEG for a few more days. Please keep Paisley in your prayers as we wait, we're not out of the woods yet.
Thank you all for all of your prayers!!! Your prayers are being answered. Just 12 weeks ago Paisley's prognosis was quite grave and so far she has beaten all odds. I remember the when the doctor came to the hospital room to tell us what was going on with Paisley. He kept watching me as if he were expecting me to totally lose it while he told us that our baby would probably have so many problems. I wish he could see my girl now! Praise God!!!
Monday, November 15, 2010
Babies Can't Wait...Visit 1
Paisley had her first session with her physical therapist last Thursday. Of course BCW was about 30 minutes wait so once again my baby was waiting on Babies CAN'T Wait. Not that we've had any problems like this before...
The visit with te physical therapist did go quite well. Paisley really enjoyed all the attention. The therapist worked with her on sitting on her knees (not a fun activity in Paisley' opinion) and being able to sit up on her own. Paisley started sitting up on her own on Wednesday twice and since her visit with BCW she is basically a sitting up pro!
The therapist stayed with Paisley for about an hour and she'll be back this Wednesday. Since Paisley is now sitting up on her own they will focus more on banging toys together and crawling.
Funny story, while BCW was here on Wednesday, Paisley decided she could not use her left hand. I'm not sure exactly what her problem was but she absolutely refused to do aything with her left hand. When she would roll she acted like her left hand was just in her way and no use to her. The therapist asked me if she it was common for her to not use her left had and I told her no. Of course as soon as the therapist left Paisley once again had a fully functioning left hand.
Overall the visit was a success and Paisley will continue to progress.
The visit with te physical therapist did go quite well. Paisley really enjoyed all the attention. The therapist worked with her on sitting on her knees (not a fun activity in Paisley' opinion) and being able to sit up on her own. Paisley started sitting up on her own on Wednesday twice and since her visit with BCW she is basically a sitting up pro!
The therapist stayed with Paisley for about an hour and she'll be back this Wednesday. Since Paisley is now sitting up on her own they will focus more on banging toys together and crawling.
Funny story, while BCW was here on Wednesday, Paisley decided she could not use her left hand. I'm not sure exactly what her problem was but she absolutely refused to do aything with her left hand. When she would roll she acted like her left hand was just in her way and no use to her. The therapist asked me if she it was common for her to not use her left had and I told her no. Of course as soon as the therapist left Paisley once again had a fully functioning left hand.
Overall the visit was a success and Paisley will continue to progress.
Wednesday, November 10, 2010
.Greatly Postponed Update
Our family recently moved and it's made me get a little behind on my updates. This is a comprehensive update on everything that's been going on the last couple of weeks!
Paisley had a check up with her neurologist a couple of weeks ago that went really well. The neurologist commented on how good Paisley looked. Most of the time when babies are on ACTH they get quite swollen and often develop a bad case of baby acne. Fortunately, Paisley has not really had any side effects. The only side effect we've noticed has been a slight puffiness whenever Paisley's ACTH dose is changed, but that normally goes away in a few days.
While we were at the neurologist we were also able to schedule Paisley's next EEG which will be November 29 and we will go for the results on December 3. It's only a few weeks away and we're very excited but also quite nervous. We've had to wait until Paisley is off of the ACTH to schedule the EEG. Her last dose of ACTH is November 26 so we're having the EEG on the first possible day.
The neurologist does think that Paisley could have a genetic vitamin B12 deficeincy. She has referred us to a geneticist who we will go see to decide on what treatment plan they want Paisley. I'm not really sure what all this visit will include but it doesn't seem to be as serious as the other things we've faced so we'll just see when we get there.
Paisley also had her 9 month 'well baby' visit since my last post. It was so nice to go for a 'well baby' visit since we've been going to the doctor so much just hoping we don't find out something bad. Paisley's pediatrician said that Paisley looks great! She weighs just over 20 lbs and is 29 inches. Overall the visit was wonderful. The pediatrician did ask that I talk with Babies Can't Wait about having a speech pathologist work with Paisley. Paisley isn't a big fan of eating solid foods and she sometimes has problems with finger foods so a speech pathologist would work with her to develop her eating skills.
Babies Can't Wait is finally going to stop making Paisley wait!!!! Her first physical therapy session is tomorrow morning. Last time they came to meet with us they set Paisley's short term goal as being able to sit unsupported for an extended period and her long term goal as being able to crawl. Our case manager told me that they want Paisley to reach her short term goal within 6 months and her long term goal within a year. Well, Paisley can now sit unsupported for as long as she wants...I'm really hoping it won't be as much of a hassle to change a goal as it was to get the entire process started.
The physical therapist will be here tomorrow morning and will work with Paisley for about an hour. They've warned us that she'll be very tired after so Paisley will probably take a good nap tomorrow afternoon.
That's all for now. I'll try to give everyone an update after the therapy session.
Paisley had a check up with her neurologist a couple of weeks ago that went really well. The neurologist commented on how good Paisley looked. Most of the time when babies are on ACTH they get quite swollen and often develop a bad case of baby acne. Fortunately, Paisley has not really had any side effects. The only side effect we've noticed has been a slight puffiness whenever Paisley's ACTH dose is changed, but that normally goes away in a few days.
While we were at the neurologist we were also able to schedule Paisley's next EEG which will be November 29 and we will go for the results on December 3. It's only a few weeks away and we're very excited but also quite nervous. We've had to wait until Paisley is off of the ACTH to schedule the EEG. Her last dose of ACTH is November 26 so we're having the EEG on the first possible day.
The neurologist does think that Paisley could have a genetic vitamin B12 deficeincy. She has referred us to a geneticist who we will go see to decide on what treatment plan they want Paisley. I'm not really sure what all this visit will include but it doesn't seem to be as serious as the other things we've faced so we'll just see when we get there.
Paisley also had her 9 month 'well baby' visit since my last post. It was so nice to go for a 'well baby' visit since we've been going to the doctor so much just hoping we don't find out something bad. Paisley's pediatrician said that Paisley looks great! She weighs just over 20 lbs and is 29 inches. Overall the visit was wonderful. The pediatrician did ask that I talk with Babies Can't Wait about having a speech pathologist work with Paisley. Paisley isn't a big fan of eating solid foods and she sometimes has problems with finger foods so a speech pathologist would work with her to develop her eating skills.
Babies Can't Wait is finally going to stop making Paisley wait!!!! Her first physical therapy session is tomorrow morning. Last time they came to meet with us they set Paisley's short term goal as being able to sit unsupported for an extended period and her long term goal as being able to crawl. Our case manager told me that they want Paisley to reach her short term goal within 6 months and her long term goal within a year. Well, Paisley can now sit unsupported for as long as she wants...I'm really hoping it won't be as much of a hassle to change a goal as it was to get the entire process started.
The physical therapist will be here tomorrow morning and will work with Paisley for about an hour. They've warned us that she'll be very tired after so Paisley will probably take a good nap tomorrow afternoon.
That's all for now. I'll try to give everyone an update after the therapy session.
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