It Pours.
This is so true. It has been crazy around here. The weather has been awful. There have been rain and hail storms with cold weather followed by hot days followed by cold, just all over the place. Everyone I talk to has either been getting sick or their kids or coworkers are sick. Friday night the weather got to Casey. She started running a fever and we literally got about an hour of sleep. Between suctioning, medicating, and trying to calm her crying down it was a really long night. She is still not feeling well. She is not crying as much, and we have a better control of her fever, but she still needs medication to help with pain and fever as well as to help thin out her secretions.
On Thursday night I went to prime her pump (put in fresh food) and when I opened the pump it broke. The door that holds the bag in place broke so it would no longer close. If it can't close it doesn't work. I called in to get it replaced and we were too late to get it sent out that day so they sent it out Friday for Saturday delivery. While we waited we had to rubber band the door close and get it just right so it would stay in place. I was really happy around 11 Saturday morning when the new one showed up.
I am not sure if it was the pump not feeding normally or if it was the early signs of her getting sick. Something made Casey throw up both Thursday and Friday night.
Casey has been really bad about laying on her GTube lately. She lays on the side then smooshed it into her stomach. This leaves a gap instead of a nice seal. So if we don't catch it and move her off of it we find a huge puddle of leaky food and yuck just waiting for us. The puddle forms fast too. I am talking a minute and you have a mess. We have been doing everything we can to keep her from doing this. It has been so hard and the moisture in the wound has led to granulation tissue. So not only is it a mess, but now it is also painful for Casey.
On Wednesday Casey's new PT is coming to do his assessment. After that we have the ARD meeting at the school on the 13th then she is ready to go. The ARD will determine her care plan (therapies, frequency, etc). After the ARD we can set up her new schedule then on the 23rd the services transfer over.
That is about it for now. We hope everyone is well.
Monday, March 30, 2009
Wednesday, March 25, 2009
ENT
Casey's ENT appointment went well this morning. They did not have to clean her ears this time to see the drum so that was great news. Last time she screamed so much when they cleaned them out. The doctor said that she doesn't currently have any infections. However, the negative pressure he sees (and has been watching) is getting worse with each visit. He said that it is not an emergency but that he does feel she should get tubes again.
We have had them done twice before and know that she does pretty well with them so we are not to stressed about having them done. The only thing that concerns us is that it requires her to be put under. She doesn't have to be intubated though so that is always good. We have not had any procedures done in Austin yet so I have not met any of the anesthesiologists. We had some really bad experiences with anesthesia in Los Angeles. We also had some good. Once we found a good anesthesiologists that listened to us and understood how Casey worked we just kept going back to the same one. I hope that we as good or even better anesthesiologists here in Austin. We have been really happy with her doctors, so I am optimistic.
We have been talking with Casey's neuro about getting Salivary Gland Botox Injections. Many of Casey's doctors have talked about this and we all think it is at least worth a try. She has had Botox in her legs before to try and help loosen them up. She did not have any reaction (good or bad) to the previous injection. While the doctor is doing her salivary gland, she is also going to try a larger more directed injection into Casey's legs again. Maybe since it has been a while and she has grown so much we will be able to see some improvement this time.
Being that ear tubes and Botox require anesthesia we have decided to try and get them done together. The less anesthesia the better. We were originally looking at getting her Botox done in April, but in order to coordinate both doctors it may end up getting pushed back a little while. As of right now I do not have a date. As soon as we do I will post more info. As soon as we do I will be sure and schedule a meeting with anesthesia ahead of time to. When we did that for Casey's foot surgery we felt like things went a little smoother on procedure day.
We finally have Casey's ARD scheduled. I will be meeting with reps from her school as well as current and future therapists at her home campus on 4/13. We will go over all of Casey's needs and get a plan in place for her moving forward. I will be sure and post info on how that goes as well. I should hear from her current PT sometime today to schedule his visit to come out and do his assessment.
We are very busy lately. Things are getting done which is good, just long days. As always we hope everyone is doing well.
We have had them done twice before and know that she does pretty well with them so we are not to stressed about having them done. The only thing that concerns us is that it requires her to be put under. She doesn't have to be intubated though so that is always good. We have not had any procedures done in Austin yet so I have not met any of the anesthesiologists. We had some really bad experiences with anesthesia in Los Angeles. We also had some good. Once we found a good anesthesiologists that listened to us and understood how Casey worked we just kept going back to the same one. I hope that we as good or even better anesthesiologists here in Austin. We have been really happy with her doctors, so I am optimistic.
We have been talking with Casey's neuro about getting Salivary Gland Botox Injections. Many of Casey's doctors have talked about this and we all think it is at least worth a try. She has had Botox in her legs before to try and help loosen them up. She did not have any reaction (good or bad) to the previous injection. While the doctor is doing her salivary gland, she is also going to try a larger more directed injection into Casey's legs again. Maybe since it has been a while and she has grown so much we will be able to see some improvement this time.
Being that ear tubes and Botox require anesthesia we have decided to try and get them done together. The less anesthesia the better. We were originally looking at getting her Botox done in April, but in order to coordinate both doctors it may end up getting pushed back a little while. As of right now I do not have a date. As soon as we do I will post more info. As soon as we do I will be sure and schedule a meeting with anesthesia ahead of time to. When we did that for Casey's foot surgery we felt like things went a little smoother on procedure day.
We finally have Casey's ARD scheduled. I will be meeting with reps from her school as well as current and future therapists at her home campus on 4/13. We will go over all of Casey's needs and get a plan in place for her moving forward. I will be sure and post info on how that goes as well. I should hear from her current PT sometime today to schedule his visit to come out and do his assessment.
We are very busy lately. Things are getting done which is good, just long days. As always we hope everyone is doing well.
Tuesday, March 24, 2009
Waivers
We have been running into some issues with our insurance not covering things all of a sudden (I mentioned Prevacid earlier) and it just keeps getting worse. To fight these issues can take a lot of time. In some cases I don't have time to fight these. We need the service and we can't do without. So it was suggested that I look into Medicaid waiver programs.
Back in Reagan days there was a little girl named Katie Beckett. She and her family really paved the way for a lot of special needs families today to be able to live at home instead of institutions. When you hear about Medicaid waiver programs they are often referred to as the Katie Beckett program. I did some research on her and she really has an amazing story. Being that she pioneered so many of the issues we deal with everyday I felt that I need to at least mention her in this post. Thanks, Katie and the entire Beckett family!
When we were in California we were told that Casey should be eligible for a Medicaid Waiver. Basically this would get her additional coverage for things our insurance would not cover. She would be able to get onto this list based on her severity, not on the household income. To qualify for income based services you can't make more than $20K a year per household, or something like that.
I called the numbers given and everything I could find in California to try and get Casey into these programs. I went around and around with the different agencies I called. Many of them refused to acknowledge the programs even existed. Some that admitted there were such programs refused to admit that the were not income based. It was so frustrating. I spent hours, day after day, for months trying to get Casey into the programs. We did not have nursing at all during this time and to take even a 5 minute phone call was tough, much less hours. After not getting anywhere I ended up giving up. I did try again 6-9 months later, but ran into the same issues. I just did not have the time to fight with them about it so we just went without. It was very frustrating.
As soon as it was suggested again I went back to the grief I had dealing with these in California. I agreed that I needed to try, but that I really did not want to go through this again. I had not tried since coming to Texas. Even though I feared the worst I did suck it up and started collecting information, numbers, etc to dig in.
I was so HAPPILY surprised. The first number I called listened to me and put me directly in contact with the right people to get me started. As it turns out there are many waivers and depending on your situation you may qualify for one to many of these waivers. The whole thing is really confusing. After trying to make sense of everything and figure out which lists I need to get on I stumbled across a fabulous link. Anyone out there looking into the waivers for yourself, aged, or disabled loved ones check it out.
There are a bunch of links here that go over the different types of waivers, who qualifies, how to get on them, all that good stuff. After reading through these documents I am so much more comfortable navigating the system now. I wish I had found this site sooner.
I still have a lot of work to do to get onto these lists. Some of the lists have years of waiting periods. At least I know more about the programs out there and what to expect now. I just really wanted to share this link for anyone that can use it. I hope it can help!
Back in Reagan days there was a little girl named Katie Beckett. She and her family really paved the way for a lot of special needs families today to be able to live at home instead of institutions. When you hear about Medicaid waiver programs they are often referred to as the Katie Beckett program. I did some research on her and she really has an amazing story. Being that she pioneered so many of the issues we deal with everyday I felt that I need to at least mention her in this post. Thanks, Katie and the entire Beckett family!
When we were in California we were told that Casey should be eligible for a Medicaid Waiver. Basically this would get her additional coverage for things our insurance would not cover. She would be able to get onto this list based on her severity, not on the household income. To qualify for income based services you can't make more than $20K a year per household, or something like that.
I called the numbers given and everything I could find in California to try and get Casey into these programs. I went around and around with the different agencies I called. Many of them refused to acknowledge the programs even existed. Some that admitted there were such programs refused to admit that the were not income based. It was so frustrating. I spent hours, day after day, for months trying to get Casey into the programs. We did not have nursing at all during this time and to take even a 5 minute phone call was tough, much less hours. After not getting anywhere I ended up giving up. I did try again 6-9 months later, but ran into the same issues. I just did not have the time to fight with them about it so we just went without. It was very frustrating.
As soon as it was suggested again I went back to the grief I had dealing with these in California. I agreed that I needed to try, but that I really did not want to go through this again. I had not tried since coming to Texas. Even though I feared the worst I did suck it up and started collecting information, numbers, etc to dig in.
I was so HAPPILY surprised. The first number I called listened to me and put me directly in contact with the right people to get me started. As it turns out there are many waivers and depending on your situation you may qualify for one to many of these waivers. The whole thing is really confusing. After trying to make sense of everything and figure out which lists I need to get on I stumbled across a fabulous link. Anyone out there looking into the waivers for yourself, aged, or disabled loved ones check it out.
There are a bunch of links here that go over the different types of waivers, who qualifies, how to get on them, all that good stuff. After reading through these documents I am so much more comfortable navigating the system now. I wish I had found this site sooner.
I still have a lot of work to do to get onto these lists. Some of the lists have years of waiting periods. At least I know more about the programs out there and what to expect now. I just really wanted to share this link for anyone that can use it. I hope it can help!
Dentist
Casey had her very first dentist appointment yesterday. We had a few dentists that were referred by her ENT and only one of them was in our network so we decided to start with him. Overall it was a very good experience. The only bad part was that we had to drive way out on Bee Caves (no where near our place).
Casey was really upset the entire way to the appointment. Maritza had to suction and reposition her head a lot on the way. While we were on MOPAC some idiot 2 cars in front of us started to exit then changed his mind last minute. When he pulled back on the freeway the car in front of us slammed on their brakes causing me to slam on mine as well. The van's backseat can be a little brutal when you have to brake or gas quickly. Maritza got knocked over and Casey was a bit freaked out. Luckily no one was hurt and we didn't hit anyone. I just don't know what is wrong with people sometimes.
Once we finally got to the dentist I was very impressed. The office was really nice and the staff was great. If anyone is looking for a pediatric dentist Dr. Michael Kyle Raymond was really nice. I will put his info on Casey's resources link if anyone wants it.
Casey only has about half of her teeth. It is pretty common with kids like her to have dental issues. Especially with the lack of swallow. We went over her history on how they started then stopped and the color changed to a yellowish and the shape seemed wrong. He took a look and said that most G-Tube kids have tartar issues. He said that the color and shape was not actually her teeth but was in fact a thick layer of tartar. When I mentioned one split a little while back and she didn't seem to care he told me it was not her tooth. It was actually the layer of tartar that chipped of the back, her tooth is fine. He said that they will put medically fragile kids under to clean the teeth once a year or so. However, since Casey is still missing half of her teeth he thinks she should wait.
So for now we are watching her teeth to make sure they keep coming in. She actually got a new one this past weekend. As long as she continues to progress and doesn't show signs of pain we will just keep on our current course. She has one tooth that came out the back side of her gum. He is a little concerned about that one, but we just need to watch it for now. Hopefully it will grow upward and be fine. If she does start to develop teeth issue (beyond tartar) he suggested we look into taking her to San Antonio to the Dental School. He said they deal with the more complicated and rare dental issues. We hope not to need them. It is good to know they are there if we need them.
Last night I had Casey on my lap and had a good angle and she was nice and calm so I got a good look at her yellow bottom teeth. I picked at them a little with my fingernail and sure enough the layers popped right off. I feel silly now for thinking it was her tooth before. I actually saved it in her little "My First Tooth" box. I guess I don't need to keep tartar :) I did not mess with them to much so I didn't get it all. I do feel better knowing her teeth are okay.
Casey was really upset the entire way to the appointment. Maritza had to suction and reposition her head a lot on the way. While we were on MOPAC some idiot 2 cars in front of us started to exit then changed his mind last minute. When he pulled back on the freeway the car in front of us slammed on their brakes causing me to slam on mine as well. The van's backseat can be a little brutal when you have to brake or gas quickly. Maritza got knocked over and Casey was a bit freaked out. Luckily no one was hurt and we didn't hit anyone. I just don't know what is wrong with people sometimes.
Once we finally got to the dentist I was very impressed. The office was really nice and the staff was great. If anyone is looking for a pediatric dentist Dr. Michael Kyle Raymond was really nice. I will put his info on Casey's resources link if anyone wants it.
Casey only has about half of her teeth. It is pretty common with kids like her to have dental issues. Especially with the lack of swallow. We went over her history on how they started then stopped and the color changed to a yellowish and the shape seemed wrong. He took a look and said that most G-Tube kids have tartar issues. He said that the color and shape was not actually her teeth but was in fact a thick layer of tartar. When I mentioned one split a little while back and she didn't seem to care he told me it was not her tooth. It was actually the layer of tartar that chipped of the back, her tooth is fine. He said that they will put medically fragile kids under to clean the teeth once a year or so. However, since Casey is still missing half of her teeth he thinks she should wait.
So for now we are watching her teeth to make sure they keep coming in. She actually got a new one this past weekend. As long as she continues to progress and doesn't show signs of pain we will just keep on our current course. She has one tooth that came out the back side of her gum. He is a little concerned about that one, but we just need to watch it for now. Hopefully it will grow upward and be fine. If she does start to develop teeth issue (beyond tartar) he suggested we look into taking her to San Antonio to the Dental School. He said they deal with the more complicated and rare dental issues. We hope not to need them. It is good to know they are there if we need them.
Last night I had Casey on my lap and had a good angle and she was nice and calm so I got a good look at her yellow bottom teeth. I picked at them a little with my fingernail and sure enough the layers popped right off. I feel silly now for thinking it was her tooth before. I actually saved it in her little "My First Tooth" box. I guess I don't need to keep tartar :) I did not mess with them to much so I didn't get it all. I do feel better knowing her teeth are okay.
Thursday, March 19, 2009
Update
Friday we called in refills on a bunch of Casey's medications. One of these was Prevacid. Casey has been on Prevacid pretty much since birth. This medication helps reduce her reflux. On Friday the pharmacy called to tell us that our insurance is no longer paying for this drug and that they wanted to know what we want to do. WHAT?! How does insurance just decide to no longer cover medications that are NEEDED? The pharmacy told us that it would be $300-$400 a month to fill this on our own.
I spent almost 2 hours on the phone with our insurance to find out they will not pay it. They suggested I file an appeal. I have done this with MANY items. This is never a smooth process. I have thousands of dollars spent out of pocket that we have been trying to appeal (some for over a year). I had enough pills to get us to Monday morning. I did not have a year or more to deal with the appeal process. They ended up joining their pharmacist on the call. I went on to explain that I can't just give Casey a handful of Tums and send her on her way. With no swallow her reflux medication has to be in liquid form. That takes her options down to very few. Then add to that the fact that her reflux is severe and we need the strongest stuff we can get. That makes the list even shorter. Then add to that the fact that with her not being mobile I can't maintain a weekly compound. I can't guarantee that I can get to a pharmacy each week to pick it up. That pretty much closed out the list leaving just Prevacid. The pharmacist (our insurance's in house pharmacist) agreed with me, Casey needs to be on Prevacid. Then when we added to this by pointing out reflux for Casey is not just spitting up, but that any spit up puts her at increased aspiration risk due to her lack of swallow.
Even though everyone on the call agreed that Casey should be given this exemption, no one could do it over the phone. It's 2009, and the only way to file a drug appeal is by snail mail! That is so sad to me. Medical claims I can at least fax in, but for drugs they have to be mailed. The minimum to expect for this is 2-3 days in mail followed by 30 day turn around at the office. When I asked what our insurance offered as a plan B they didn't have much to say. The listed out a few medications that Casey can't take since they can not be liquefied, then went on to say they suggest I just purchase the medication and submit it for reimbursement after the appeal is approved. That is IF the appeal is approved.
I was really not happy with the answers I was getting so I got on the phone with Casey's GI doctor/nurse to see what they suggest. When I called them I found out it is not just us. Most insurances have decided to no longer cover this class of medication. The doctor's office was as frustrated as I was. They told me that the insurance companies are making it hard for them to treat their patients. The doctor did come up with a solution that luckily is covered by our insurance. When they called it the pharmacy was out of it. They did a special order and it came in early Monday. Just in time.
Yesterday Casey started running a low fever and just cried all morning. We got her some pain killers and she had a bath and her fever came down. She was just not a happy girl yesterday. She was so worked up that she would not take her afternoon nap. Around 5 she finally fell asleep. When she woke up at 6 we prepared for a long night. Surprisingly she went right back to sleep when we took her to bed around 8. We had to give her more medicine, but she was able to get comfortable and get a decent night's sleep. She started out okay this morning but just before 10 she got all worked up again. Most of the morning has been spent suctioning non stop. She isn't running a fever, but she is definitely not feeling well today. I hope what ever this is that's bugging her passes soon. I hate it when she doesn't feel good.
Her switch and supplies came in. We ended up getting the exact one that she had on loan from the school. It ended up being the cheapest, and since she was already used to it the transition was really easy. She is playing with it now. It seems to be one of the only ways to get her to calm down today.
That's about it. Casey has a dentist and ENT appointment next week. All of her therapies start back up next week too. It will be a busy week around here. Congratulations to the Campos on the new baby. We hope everyone is enjoying spring break and doing well.
I spent almost 2 hours on the phone with our insurance to find out they will not pay it. They suggested I file an appeal. I have done this with MANY items. This is never a smooth process. I have thousands of dollars spent out of pocket that we have been trying to appeal (some for over a year). I had enough pills to get us to Monday morning. I did not have a year or more to deal with the appeal process. They ended up joining their pharmacist on the call. I went on to explain that I can't just give Casey a handful of Tums and send her on her way. With no swallow her reflux medication has to be in liquid form. That takes her options down to very few. Then add to that the fact that her reflux is severe and we need the strongest stuff we can get. That makes the list even shorter. Then add to that the fact that with her not being mobile I can't maintain a weekly compound. I can't guarantee that I can get to a pharmacy each week to pick it up. That pretty much closed out the list leaving just Prevacid. The pharmacist (our insurance's in house pharmacist) agreed with me, Casey needs to be on Prevacid. Then when we added to this by pointing out reflux for Casey is not just spitting up, but that any spit up puts her at increased aspiration risk due to her lack of swallow.
Even though everyone on the call agreed that Casey should be given this exemption, no one could do it over the phone. It's 2009, and the only way to file a drug appeal is by snail mail! That is so sad to me. Medical claims I can at least fax in, but for drugs they have to be mailed. The minimum to expect for this is 2-3 days in mail followed by 30 day turn around at the office. When I asked what our insurance offered as a plan B they didn't have much to say. The listed out a few medications that Casey can't take since they can not be liquefied, then went on to say they suggest I just purchase the medication and submit it for reimbursement after the appeal is approved. That is IF the appeal is approved.
I was really not happy with the answers I was getting so I got on the phone with Casey's GI doctor/nurse to see what they suggest. When I called them I found out it is not just us. Most insurances have decided to no longer cover this class of medication. The doctor's office was as frustrated as I was. They told me that the insurance companies are making it hard for them to treat their patients. The doctor did come up with a solution that luckily is covered by our insurance. When they called it the pharmacy was out of it. They did a special order and it came in early Monday. Just in time.
Yesterday Casey started running a low fever and just cried all morning. We got her some pain killers and she had a bath and her fever came down. She was just not a happy girl yesterday. She was so worked up that she would not take her afternoon nap. Around 5 she finally fell asleep. When she woke up at 6 we prepared for a long night. Surprisingly she went right back to sleep when we took her to bed around 8. We had to give her more medicine, but she was able to get comfortable and get a decent night's sleep. She started out okay this morning but just before 10 she got all worked up again. Most of the morning has been spent suctioning non stop. She isn't running a fever, but she is definitely not feeling well today. I hope what ever this is that's bugging her passes soon. I hate it when she doesn't feel good.
Her switch and supplies came in. We ended up getting the exact one that she had on loan from the school. It ended up being the cheapest, and since she was already used to it the transition was really easy. She is playing with it now. It seems to be one of the only ways to get her to calm down today.
That's about it. Casey has a dentist and ENT appointment next week. All of her therapies start back up next week too. It will be a busy week around here. Congratulations to the Campos on the new baby. We hope everyone is enjoying spring break and doing well.
Thursday, March 12, 2009
The Haps
Casey had her pulmonary appointment on Monday. She did pretty good. She is getting much better about going out in her chair. She still hates the car and doesn't want to be in her chair at home, but out of the house she seems to finally be relaxing a bit in her chair. She had good oxygen levels and her lungs sound pretty good. She always has a little crackle in her lungs. As for now the doctor talked about stopping a few of her breathing treatments maybe this summer. For now he said "if it's not broke, don't fix it". We go back in June. Until June Casey will stay on her current respiratory plan.
Next week is spring break. Half of Casey's therapists are off. Casey's nurse is changing her days around. It's going to be a pretty quiet week for Casey and I. Tim still has to work. Casey and I have a pretty clear calendar though. She has a couple therapies on Friday, and that is it. Maybe if the weather is nice she and I can get outside some.
Yesterday another front blew in. This one is cold and wet. It has been raining a lot and today's highs are in the 40's. I wish it would just pick one and go with it. Either stay hot or stay cold. I don't even care which, just pick one already. I remember Texas weather changing a lot when I used to live here, but I don't remember it being this extreme. We had our AC running on Monday and Tuesday because it was 85-90 outside. Then yesterday it was in the 40's. It's just crazy.
I am going to drive up to Dallas on Saturday with my grandparents. My nephew is turning 4. Tim and Casey have decided stay sit this one out. Car rides are so hard on her. Then add the crazy weather and I am sure at least a handful of other kids. It's just too much for her. She'll have her own party at home next month. No driving required, she can stay home and have the party come to her.
Real quick I want to give props to Kaz. Kaz is the parent company of a lot of over the counter medical products. Specificly Vick's thermometers. I recently had some issues with ours and when I contacted customer support they more than took care of it. They responded very quick and went out of their way to make sure that the customer is satisified. It's nice that some companies still value customers.
There is not much going on next week, so I may not have anything to post. I hope everyone has a fun, and safe spring break.
Next week is spring break. Half of Casey's therapists are off. Casey's nurse is changing her days around. It's going to be a pretty quiet week for Casey and I. Tim still has to work. Casey and I have a pretty clear calendar though. She has a couple therapies on Friday, and that is it. Maybe if the weather is nice she and I can get outside some.
Yesterday another front blew in. This one is cold and wet. It has been raining a lot and today's highs are in the 40's. I wish it would just pick one and go with it. Either stay hot or stay cold. I don't even care which, just pick one already. I remember Texas weather changing a lot when I used to live here, but I don't remember it being this extreme. We had our AC running on Monday and Tuesday because it was 85-90 outside. Then yesterday it was in the 40's. It's just crazy.
I am going to drive up to Dallas on Saturday with my grandparents. My nephew is turning 4. Tim and Casey have decided stay sit this one out. Car rides are so hard on her. Then add the crazy weather and I am sure at least a handful of other kids. It's just too much for her. She'll have her own party at home next month. No driving required, she can stay home and have the party come to her.
Real quick I want to give props to Kaz. Kaz is the parent company of a lot of over the counter medical products. Specificly Vick's thermometers. I recently had some issues with ours and when I contacted customer support they more than took care of it. They responded very quick and went out of their way to make sure that the customer is satisified. It's nice that some companies still value customers.
There is not much going on next week, so I may not have anything to post. I hope everyone has a fun, and safe spring break.
Friday, March 06, 2009
Round 3
Yesterday I got a call from Casey's soon-to-be OT with the school district. She had a last minute opening and was able to come by this morning to meet Casey and shadow Casey with her current OT. The new OT seems really nice and has lots of ideas of stuff that she wants to work on with Casey. She had some adapted toys in her car and brought one in for Casey to try out. I am sure everyone has seen the little dogs, pigs, cows, etc that are usually in little fenced in areas in the mall. They are stuffed and make noises and move around. I think the pig does flips the dog barks and sits up. They have been around forever. Anyway, she brought in the dog adapted to work with a switch. So instead of turning it on or off like the ones you see in toy stores this one plugs into the switch and when Casey activates the switch the dog does it thing until Casey releases. She seemed to really like it. She would hold down the switch for a long time and watch the dog do his thing. I think the rest of us in the room were ready for a break, but not Casey. What ever makes her happy.
Casey's current OT fitted her for new hand splints today. When Casey was itty bitty (NICU days) she had little splints that held her fingers open. Then as she became a little less white knuckled we started using thumb splints instead. The thumb splints do not do anything for the fingers, and the finger splints did nothing for the thumb. The splints that Casey was fitted for today are specially made to open up her thumb and fingers. It is the same material as her thumb splints, there is just a lot more of it. It would be som nice if she could get her hands open enough to start to grab things a little better. Time will tell I guess.
I found out that Casey's nurse has actually worked with the new OT with one of her previous patients. It's always nice to have an established relationship already in place. We are one step closer to being transitioned. I am going to be sad not to see all Casey's friends from ECI each week.
Sometime in the next couple of weeks we should have her soon-to-be PT come by. Then we will have the ARD meeting. After the ARD meeting it is pretty much just finishing up paperwork to get her enrolled then setting up the new schedule. It is so crazy that she is 3 in just over a month. Where has the time gone?!
Casey's current OT fitted her for new hand splints today. When Casey was itty bitty (NICU days) she had little splints that held her fingers open. Then as she became a little less white knuckled we started using thumb splints instead. The thumb splints do not do anything for the fingers, and the finger splints did nothing for the thumb. The splints that Casey was fitted for today are specially made to open up her thumb and fingers. It is the same material as her thumb splints, there is just a lot more of it. It would be som nice if she could get her hands open enough to start to grab things a little better. Time will tell I guess.
I found out that Casey's nurse has actually worked with the new OT with one of her previous patients. It's always nice to have an established relationship already in place. We are one step closer to being transitioned. I am going to be sad not to see all Casey's friends from ECI each week.
Sometime in the next couple of weeks we should have her soon-to-be PT come by. Then we will have the ARD meeting. After the ARD meeting it is pretty much just finishing up paperwork to get her enrolled then setting up the new schedule. It is so crazy that she is 3 in just over a month. Where has the time gone?!
Thursday, March 05, 2009
Can't Resist
The weather has been beautiful this week. Today it was a little cool breeze and a sunny 84 outside. Since Casey has been adjusting better to her chair we really want to try and get her outside as much as we can this summer. So today was a perfect weather day and she was doing good so we took a walk down to the pool and back. Casey did great! And, of course, she looked style'n the whole way.
Wednesday, March 04, 2009
Update
This weekend I was brushing Casey's teeth, no big deal. All of a sudden I noticed an odd piece of something in her mouth. She was actually playing with it. She had her tongue pushing it up against the back of her teeth. I finally managed to get her tongue out of the way and pulled the object out. I could not believe what it was. The bottom front 4 teeth I think we have posted about before. They started growing pretty early on, then when Casey got so sick everything stopped. During the stop time her teeth really changed. They are discolored and oddly shaped. When things started growing again they grew a little bigger, but the damage was already done. We later learned that teeth are a common problem with brain injured kids. We also later learned that the teeth are the first thing the body starves when it needs to preserve.
Anyway, back to the story. So I pulled out this object. I was thinking it may have been some plaque or maybe even some food. Even though Casey doesn't eat, she does have reflux and spits up from time to time. I was way off. The object was actually the back half of one of her front bottom teeth. Not the top half, not the right, the back half. I did not even know teeth could split that way. The good news is that she did not seem bothered by it at all. I was a lot more freaked out by it than she was. If anything she seemed curious. When I told her OT what happened she was so excited to hear that Casey was moving her tongue around to check it out.
Tim and I had talked with her ENT a little while back about needing to get her in to see a dentist soon. He gave us a few names of people he has worked with before that should be good with Casey. It has been on our list of things to follow up on for a while. On the list, but not very high. Needless to say it got moved right to the top. Since she is not in pain they did not think she needs to come in right away. Casey is going to her first dentist appointment on March 23. It is just a consult. When I spoke with them on the phone they felt it would be best to start with just meeting Casey and letting the doctor get to know her and her special needs.
Today was a good day. Shortly after lunch Ken, Tim's brother, called. He was in Austin for a quick day trip and had a little extra time. He was able to swing by for a nice visit. Casey always loves company.
I think that is about it. Casey has a pulmonary appointment on Monday. I will be sure to post next week to let everyone know how it goes. As always, we wish everyone well.
Anyway, back to the story. So I pulled out this object. I was thinking it may have been some plaque or maybe even some food. Even though Casey doesn't eat, she does have reflux and spits up from time to time. I was way off. The object was actually the back half of one of her front bottom teeth. Not the top half, not the right, the back half. I did not even know teeth could split that way. The good news is that she did not seem bothered by it at all. I was a lot more freaked out by it than she was. If anything she seemed curious. When I told her OT what happened she was so excited to hear that Casey was moving her tongue around to check it out.
Tim and I had talked with her ENT a little while back about needing to get her in to see a dentist soon. He gave us a few names of people he has worked with before that should be good with Casey. It has been on our list of things to follow up on for a while. On the list, but not very high. Needless to say it got moved right to the top. Since she is not in pain they did not think she needs to come in right away. Casey is going to her first dentist appointment on March 23. It is just a consult. When I spoke with them on the phone they felt it would be best to start with just meeting Casey and letting the doctor get to know her and her special needs.
Today was a good day. Shortly after lunch Ken, Tim's brother, called. He was in Austin for a quick day trip and had a little extra time. He was able to swing by for a nice visit. Casey always loves company.
I think that is about it. Casey has a pulmonary appointment on Monday. I will be sure to post next week to let everyone know how it goes. As always, we wish everyone well.
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