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.
Friday, October 22, 2010
Finally!!!
On Wednesday, Babies Can't Wait finally came to evaluate Paisley. Seven weeks after the original call was made to refer Paisley they finally made there way to us. Of course, this was just the evaluation and no programs have been started yet but at least we're getting somewhere. I just praise God that Paisley isn't having any serious developmental problems that have been put off.
Now onto the BCW update. The two evaluators arrived at 8am to start evaluating Paisley. There was a physical therapist and an occupational therapist. The physical therapist spent time playing with Paisley getting her to roll over, sit up and other gross motor skills. The occupational therapist used blocks and noise making toys to see Paisley's reaction. After spending about an hour with her they gave me their update. As expected, there are a few things that Paisley is not doing that are at her age level but the therapists did say there were areas what she was right on track. The basic idea though is that she is eligible for services from BCW and they are suppose to come meet with me again next week to discuss exactly what services she will be receiving. I'm hoping that it won't take as long to get the therapy set up as it did to get the evaluation set up. :)
Extremely Good news, Paisley is half way through her injection series AND is STILL seizure free!!! That makes 6 weeks without a seizure!
At this point in the injection series I think Paisley may be having more of an effect from the medicine than she was in the beginning. She's definitely fussier on shot days and I'm not able to get much done on those days because she wants to constantly be held. Other than the fussiness though, she's doing amazing with the shots.
Now onto the BCW update. The two evaluators arrived at 8am to start evaluating Paisley. There was a physical therapist and an occupational therapist. The physical therapist spent time playing with Paisley getting her to roll over, sit up and other gross motor skills. The occupational therapist used blocks and noise making toys to see Paisley's reaction. After spending about an hour with her they gave me their update. As expected, there are a few things that Paisley is not doing that are at her age level but the therapists did say there were areas what she was right on track. The basic idea though is that she is eligible for services from BCW and they are suppose to come meet with me again next week to discuss exactly what services she will be receiving. I'm hoping that it won't take as long to get the therapy set up as it did to get the evaluation set up. :)
Extremely Good news, Paisley is half way through her injection series AND is STILL seizure free!!! That makes 6 weeks without a seizure!
At this point in the injection series I think Paisley may be having more of an effect from the medicine than she was in the beginning. She's definitely fussier on shot days and I'm not able to get much done on those days because she wants to constantly be held. Other than the fussiness though, she's doing amazing with the shots.
Friday, October 8, 2010
Doing Great!!!
Paisley is doing so well now! She's been on the ACTH for just over a month and she is seizure free for OVER 4 WEEKS!!!! We couldn't be happier. We are still waiting for Babies Can't Wait to come do their evaluation of her but I think she's starting to catch up on everything by herself. She can sit for extended periods, rolls all over the place and is getting up on her knees and elbows! Thank you all so much for all of your prayers. We don't know for sure yet if the hypsarrhythmia has stopped but atleast the seizures are under control. We won't have another EEG until the beginning of December to find out just how effective the ACTH has been.
Paisley did have an unrelated trip to the doctor this week. I noticed her tugging on her ear on Monday so Tuesday morning we headed in the see the pediatrician. Luckily it wasn't an ear infection but she did have a foreign body in her ear. I can't believe at 8 months old she's already putting things in her ears! The doctor was able to flush it out though and Paisley is fine.
Next week, Oct. 11-17, is Infantile Spasm Awareness Week. http://www.infantilespasmsinfo.org/About-Infantile-Spasms.php This is a great website that tells about what exactly infantile spasms are and it has a video showing what the spasms look like. I think it's very important to get information out there because this is such a rare disease it often goes undiagnosed for an extended period.
Paisley did have an unrelated trip to the doctor this week. I noticed her tugging on her ear on Monday so Tuesday morning we headed in the see the pediatrician. Luckily it wasn't an ear infection but she did have a foreign body in her ear. I can't believe at 8 months old she's already putting things in her ears! The doctor was able to flush it out though and Paisley is fine.
Next week, Oct. 11-17, is Infantile Spasm Awareness Week. http://www.infantilespasmsinfo.org/About-Infantile-Spasms.php This is a great website that tells about what exactly infantile spasms are and it has a video showing what the spasms look like. I think it's very important to get information out there because this is such a rare disease it often goes undiagnosed for an extended period.
Friday, September 24, 2010
Postponed Update
I've been a little behind on giving an update after Mondays post, I'm sorry about that as I know many of you follow this blog instead of calling for updates. I didn't mean to make you wait but in the spirit of true transparency I needed time for myself to accept Mondays visit before letting everyone in on what's happening.
On Monday afternoon a very nice nurse came to our apartment from Children's First (a state funded organization which monitors high risk children, http://health.state.ga.us/programs/childrenfirst/). Paisley went down for a nap about 30 minutes before the nurse arrived but I didn't have to wake her since the nurse just wanted to survey me about different developmental milestones Paisley has reached or not reached. I guess it was kind of a blessing that Paisley was sleeping because she had a LOT of questions and surveys to fill out. So, she spent about an hour with me asking me all about things Paisley can or can't do to determine if Paisley would be referred to the Babies Can't Wait program. She explained that Paisley would only be referred if she determined her to be developmentally delayed or if her type of seizures classified her as high risk. Well, I assumed that her seizures would probably classify her as high risk and I was pretty sure if she was going to be delayed it would probably be extremely minimal and they would just tell me a few ideas to get her/ keep her on track.
After the nurse completed all of the surveys (she asked me questions in five areas of development using the ASQ surveys) she totaled Paisley's scores. I asked her if she was going to refer Paisley to Babies Can't Wait based on her type of seizures since she hadn't asked me any real questions about her seizures yet? She said Paisley would qualify for Babies Can't Wait without considering her seizures. Obviously I knew at that point that something I said in the surveys made her think my perfect daughter could have some type of delay. I asked her if according to her surveys Paisley was delayed. She gave me a very blank look. I think she could tell she had to choose her words carefully as to not invoke the wrath of a worried mom. She showed me the scaled they use to judge development. In the five areas they rank a baby Paisley was in the delayed range in four of the areas and in the borderline range in one of the areas. My heart sank. I wanted to run and grab Paisley out of bed to show her that obviously her papers were wrong because Paisley is perfect! I'm with her everyday and there is nothing 'delayed' about her. She smiles, she's happy and she is constantly doing something new, she can even tinkle in the potty.
With no further explanations the nurse got her things together and told me Babies Can't Wait would contact me within two weeks to set up a full assessment of Paisley where they actually see her and don't just ask me questions. This was a relief because of course I felt like I answered the questions wrong and I had misrepresented my daughter.
Of course I immediately got online to research developmental milestones in babies and I was glad to find that if Paisley is in fact behind she certainly isn't far behind. She's does everything that a 6 month old can and most of the things a 7 month old can. I keep reminding myself that during the month she was having seizures/starting medicines, she slept and ate, that's about it. She felt too bad to try new things and now that she's feeling better she's ready to go!
For me though, this news has been the hardest for me to hear. Even if Paisley were to be developmentally delayed it's not that I would love her any less but it's the first time that I feel like she has been really effected by the seizures. Watching her have seizures has been horrible but knowing that they have caused some damage is even worse. It's such a helpless feeling to know that I did everything I knew to do and I still couldn't prevent it.
Now we're waiting for Babies Can't Wait to contact us to get things going. Just was a side note here, seriously BCW, two weeks? That's half a month! In baby time that's huge!!!! Didn't anyone ever tell you that babies CAN'T wait? Oh wait, that's the name of the program so you SHOULD know that. *rant finished.
To not leave things on a down note, Paisley is doing AMAZING!!! She's up on her knees and elbows getting ready to try to crawl. She reaches for things to grab them and can scoot backwards in her walker. Also, she's in a great mood, smiles all the time and laughs when daddy is really funny. Also she is now over TWO WEEKS SEIZURE FREE!!!! Praise God!!! Praise God!!!! Also we're working on four signs this week, Mama, Daddy, Milk and More. She's going to be signing and ready for Deaf Culture events in no time!
On Monday afternoon a very nice nurse came to our apartment from Children's First (a state funded organization which monitors high risk children, http://health.state.ga.us/programs/childrenfirst/). Paisley went down for a nap about 30 minutes before the nurse arrived but I didn't have to wake her since the nurse just wanted to survey me about different developmental milestones Paisley has reached or not reached. I guess it was kind of a blessing that Paisley was sleeping because she had a LOT of questions and surveys to fill out. So, she spent about an hour with me asking me all about things Paisley can or can't do to determine if Paisley would be referred to the Babies Can't Wait program. She explained that Paisley would only be referred if she determined her to be developmentally delayed or if her type of seizures classified her as high risk. Well, I assumed that her seizures would probably classify her as high risk and I was pretty sure if she was going to be delayed it would probably be extremely minimal and they would just tell me a few ideas to get her/ keep her on track.
After the nurse completed all of the surveys (she asked me questions in five areas of development using the ASQ surveys) she totaled Paisley's scores. I asked her if she was going to refer Paisley to Babies Can't Wait based on her type of seizures since she hadn't asked me any real questions about her seizures yet? She said Paisley would qualify for Babies Can't Wait without considering her seizures. Obviously I knew at that point that something I said in the surveys made her think my perfect daughter could have some type of delay. I asked her if according to her surveys Paisley was delayed. She gave me a very blank look. I think she could tell she had to choose her words carefully as to not invoke the wrath of a worried mom. She showed me the scaled they use to judge development. In the five areas they rank a baby Paisley was in the delayed range in four of the areas and in the borderline range in one of the areas. My heart sank. I wanted to run and grab Paisley out of bed to show her that obviously her papers were wrong because Paisley is perfect! I'm with her everyday and there is nothing 'delayed' about her. She smiles, she's happy and she is constantly doing something new, she can even tinkle in the potty.
With no further explanations the nurse got her things together and told me Babies Can't Wait would contact me within two weeks to set up a full assessment of Paisley where they actually see her and don't just ask me questions. This was a relief because of course I felt like I answered the questions wrong and I had misrepresented my daughter.
Of course I immediately got online to research developmental milestones in babies and I was glad to find that if Paisley is in fact behind she certainly isn't far behind. She's does everything that a 6 month old can and most of the things a 7 month old can. I keep reminding myself that during the month she was having seizures/starting medicines, she slept and ate, that's about it. She felt too bad to try new things and now that she's feeling better she's ready to go!
For me though, this news has been the hardest for me to hear. Even if Paisley were to be developmentally delayed it's not that I would love her any less but it's the first time that I feel like she has been really effected by the seizures. Watching her have seizures has been horrible but knowing that they have caused some damage is even worse. It's such a helpless feeling to know that I did everything I knew to do and I still couldn't prevent it.
Now we're waiting for Babies Can't Wait to contact us to get things going. Just was a side note here, seriously BCW, two weeks? That's half a month! In baby time that's huge!!!! Didn't anyone ever tell you that babies CAN'T wait? Oh wait, that's the name of the program so you SHOULD know that. *rant finished.
To not leave things on a down note, Paisley is doing AMAZING!!! She's up on her knees and elbows getting ready to try to crawl. She reaches for things to grab them and can scoot backwards in her walker. Also, she's in a great mood, smiles all the time and laughs when daddy is really funny. Also she is now over TWO WEEKS SEIZURE FREE!!!! Praise God!!! Praise God!!!! Also we're working on four signs this week, Mama, Daddy, Milk and More. She's going to be signing and ready for Deaf Culture events in no time!
Subscribe to:
Posts (Atom)