Casey had an appointment with her Ortho last week- just a standing 6 month check-up. Overall it went well. They wrote an order to get an evaluation for a new wheelchair. Casey has gotten so long that she is hanging out of her current chair. Currently she is in a wheelchair/stroller. The next chair will still be customized to her needs, but will be more like a wheelchair. She is getting so big!!! Depending on how the chair works, we may have to start looking into an adapted van too. We knew eventually this was coming. It will take a few weeks/months to pick the best chair for her, then it will take another 6+ months to actually get it built and ordered. By her next birthday though, possibly even by the end of the year, she will be in a big girl chair.
We have been dealing with some issues with Casey not having much output (urine) over the past month especially (off and on for a while though). We have taken her in for all kinds of tests and everything is coming back clean. We ruled out infection, dehydration, kidney stones and blockages. We went Tuesday to talk with Urology. They have us keeping a journal of all of her fluids in and out. We have to keep this for a few weeks, and help her if she goes more than 6 hours while awake with no output. She has been going about 12-13 hours up until now. Mid-May we take Casey and the journals back to see if we are leaning toward her just needing more volume in, or if we are dealing with something a little more complicated like Neurogenic Bladder. We are hoping for volume. Either way though, it is a long road ahead. Casey's intake is such a fine science that even adding an ounce a day can be tough. We will post more in May after we get some more answers. The good news is that yesterday we did not have to help her at all, so far today is going pretty good too.
I am working on uploading some pictures from Casey's birthday and other things. I will get another post with party details, pictures and more up later today or tomorrow.
Friday, April 27, 2012
Monday, March 26, 2012
Family Birthdays
Many of you may know this already, but for those that do not, most of my side of the family lives in Texas. We have some in Dallas and Houston and some here in Austin. Even though we live in the same state, between work and kids and life in general we don't get to see each other as often as we would like. We do try to get everyone together every few months. This weekend we all gathered and celebrated family birthdays from February, March and April. Casey was thrilled about the idea of getting some of her birthday presents early. What kid wouldn't like that idea?
My family came in for a late lunch on Saturday, followed by cake and presents. Casey was being good, but she wasn't really interested in much. On Sunday almost everyone came back before heading home. On Sunday, Casey was ready to play. She was wiggling all over the place trying to get to where the action was. Eventually she ended up in the playroom with her cousin (he's 1 year older). They were pretty cute. I sat with Casey on the floor and she was working really hard to keep her head up and pay attention. Riley is very into presidents and was teaching Casey all about them. He would tell her about one, then ask her if she wanted to know about another one. If she said yes he would go into detail, if not then he would go down the list until he found one she wanted to hear about. He would write it up on her chalk board and she was loving it. They were funny.
Casey was supposed to go with a class at her school to the library tomorrow. She has been looking forward to it for weeks. When we picked her up today though they told us they had to postpone a week for testing :(
Casey lost another tooth this weekend. That's 4 now. She has 3 others that are super loose. I expect she will loose more any day now. She LOVES to wake up and find treats from the tooth fairy. We have to read her tooth fairy book before she can go to sleep too.
That's about it for now. I will be sure to post after she goes to the library next week. I can't wait to hear all about it. I am sure she will have a great time. As always, we hope everyone is well.
My family came in for a late lunch on Saturday, followed by cake and presents. Casey was being good, but she wasn't really interested in much. On Sunday almost everyone came back before heading home. On Sunday, Casey was ready to play. She was wiggling all over the place trying to get to where the action was. Eventually she ended up in the playroom with her cousin (he's 1 year older). They were pretty cute. I sat with Casey on the floor and she was working really hard to keep her head up and pay attention. Riley is very into presidents and was teaching Casey all about them. He would tell her about one, then ask her if she wanted to know about another one. If she said yes he would go into detail, if not then he would go down the list until he found one she wanted to hear about. He would write it up on her chalk board and she was loving it. They were funny.
Casey was supposed to go with a class at her school to the library tomorrow. She has been looking forward to it for weeks. When we picked her up today though they told us they had to postpone a week for testing :(
Casey lost another tooth this weekend. That's 4 now. She has 3 others that are super loose. I expect she will loose more any day now. She LOVES to wake up and find treats from the tooth fairy. We have to read her tooth fairy book before she can go to sleep too.
That's about it for now. I will be sure to post after she goes to the library next week. I can't wait to hear all about it. I am sure she will have a great time. As always, we hope everyone is well.
Saturday, March 17, 2012
Updates
Spring break is over tomorrow and we go back to Casey's usual schedule. I am so glad that she had the week off; she needed it. Last week was a bad one. Casey had some GI issues that had us about ready to pack up and head to the ER a week ago Wednesday. Right as we were about to load up, she started to perk up and seemed to be coming around. She had some GI bleeding, and fever and she would not tolerate her food at all for a few days. Over last weekend we were able to get her to tolerate her food (we had to dilute it with pedialite and work our way up to formula). We did finally get her back on track. Casey used this week off to rest and get back to normal.
She has been playing some and seems to be doing much better now. We have no idea if the issues were just Casey or if she had some sort of bug. We are very happy she is doing better and that we were able to avoid the hospital.
Casey has a full week with school, therapy and some doctor appointments (all routine- nothing major). Then next weekend some family will be in town for a couple of days. She will be a busy girl. I will try to get some new pics to post and share. As always, we hope everyone is well.
She has been playing some and seems to be doing much better now. We have no idea if the issues were just Casey or if she had some sort of bug. We are very happy she is doing better and that we were able to avoid the hospital.
Casey has a full week with school, therapy and some doctor appointments (all routine- nothing major). Then next weekend some family will be in town for a couple of days. She will be a busy girl. I will try to get some new pics to post and share. As always, we hope everyone is well.
Saturday, March 03, 2012
Play for All
The city of Round Rock had the official grand opening for the new accessible park today - Play for All. Casey was having a pretty good morning and told us yes when we asked if she wanted to go. They did a great job. There are all kinds of fun things at the park, and it's not too far from our house. It was a little windy, and after a little bit the wind was bothering Casey some. She was able to hang out 
long enough to check things out and of course, get her face painted. She loves face painting.On the way home Casey was so worn out that we
had barely left the parking lot and she was already sound asleep.
I am sure we will be back to visit again soon, and often. I am so glad there are things like this for kids
with special needs nearby.
Friday, February 17, 2012
Up to 32!!!
Casey has had a pretty good week. She LOVES Valentine's Day. She was so excited to make her Valentine at school on Monday. When I was getting her dressed Tuesday I asked her if she was going to bring it home that day and she was so excited. Her nurses that worked that day brought in Valentines for her too. She was loving it. An entire day devoted to pink, purple and hearts. It was a Casey kind of day for sure.On Wednesday she had a GI appointment. Nothing major, just a follow-up. She is up to 32 pounds now. That is a pretty big deal. She just hung out while the doctor was checking her out. She did really well. After we got home the weather was a little cruddy and she started to have a hard time, but once she went to be she seemed okay.
Yesterday she got to go swimming and the weather was beautiful. We had a bit of a hard time with her bath, but other than that it was a great day. I won't go into a ton of detail, but her bath chair at home became unavailable about 10 minutes before we had to head to the pool. So, we packed the bath stuff and decided we would just give her a bath at the pool before heading home. Turns out the hand shower at the pool was also unavailable. Ugh!!!! I had to stand between her and the overhead shower while her nurse filled buckets to wash & rinse her off. The shower chair wasn't working right either there. She was not happy. Poor thing just yelled the entire time. She was very happy to be home when we finally got back. It made for a long afternoon.
The weather is nasty outside today. Casey's having a rough day with lots of drainage. Her nurse has been suctioning non-stop today. We took Casey to therapy this morning. She tried to work, but was having such a bad day. She is hanging out watching movies now (refusing to nap). I don't know if it is just a 5 year-old thing or what, but she fights naps with everything she has. She is miserable, grumpy, and in dire need of a nap - but she refuses to take one.
Next week is pretty busy. Lots of annual reviews all somehow landed on the calendar for next week. It will be a long week, but then we will be done for another year. We hope that everyone is doing well. Have a great weekend.
Monday, February 06, 2012
Long Overdue Post
Wow, it's been a while since my last post. The good news is that there is not much to report. It has been a rough winter for Casey. It seems like she gets sick with something, then as soon as we get her over it she gets sick with something else. Luckily none of these have been too serious. It just seems as though it really is always something. I have heard a lot of other parents say the same thing about their kids. I think it must be the weather. We have still not seen winter show up. We have a few days where it is cool enough to turn on the heater (or so Tim says), but then all of a sudden it gets hot again and we have the AC back on. I know this is hard on my respiratory system so I can only imagine what this is doing to Casey.
Casey has missed a lot of school and therapy so far. I think she was out of school most of the time between Halloween and the end of January. She may have gone 2-3 times total during that period. We have finally gotten her back to at least going one of her two days a week. She did not go today. She seems to have some sort of stomach bug that kicked in last week. Sunday was AWFUL!!! We suctioned non-stop and she was just miserable. I thought if she could get a good night's sleep she would be fine today. However, she was up all night. She was so tired this morning and tried to get some sleep. I decided to cancel school. Today wasn't quite as bad as yesterday, but not great either. She just now (11:PM) went to sleep for the night. We'll see how it goes. Hopefully she will be able to go to school in the morning.
It seems like all of my days are running together over the past few months, so I won't even try to catch everyone up on all of the little details since my last post. On Casey's good days she has been enjoying all of her arts and crafts that she got for Christmas, and watching lots of movies. We are trying to plan her birthday for April. It sounds far off, but it will be here before you know it. We can't decide if we are going to do a party, or just something special with family. We have barely started to work out the details.
Tim has been busy with work and his wood shop out in the garage. He is getting really good with the wood tools. I have been working with a couple of groups (local and online) that support the special needs community(s). One group I work with just launched a new website. It is pretty exciting. If you want to check it out (especially any other SN families reading this) it is called Mommies of Miracles (MOM). You may recognize Casey as the "Trivia Tuesday" image on the main page. It's an old picture, but very cute.
That's about it for now. Our night nurse called out tonight, so I am on the night shift and should get back to work. As always, we hope everyone is well.
Casey has missed a lot of school and therapy so far. I think she was out of school most of the time between Halloween and the end of January. She may have gone 2-3 times total during that period. We have finally gotten her back to at least going one of her two days a week. She did not go today. She seems to have some sort of stomach bug that kicked in last week. Sunday was AWFUL!!! We suctioned non-stop and she was just miserable. I thought if she could get a good night's sleep she would be fine today. However, she was up all night. She was so tired this morning and tried to get some sleep. I decided to cancel school. Today wasn't quite as bad as yesterday, but not great either. She just now (11:PM) went to sleep for the night. We'll see how it goes. Hopefully she will be able to go to school in the morning.
It seems like all of my days are running together over the past few months, so I won't even try to catch everyone up on all of the little details since my last post. On Casey's good days she has been enjoying all of her arts and crafts that she got for Christmas, and watching lots of movies. We are trying to plan her birthday for April. It sounds far off, but it will be here before you know it. We can't decide if we are going to do a party, or just something special with family. We have barely started to work out the details.
Tim has been busy with work and his wood shop out in the garage. He is getting really good with the wood tools. I have been working with a couple of groups (local and online) that support the special needs community(s). One group I work with just launched a new website. It is pretty exciting. If you want to check it out (especially any other SN families reading this) it is called Mommies of Miracles (MOM). You may recognize Casey as the "Trivia Tuesday" image on the main page. It's an old picture, but very cute.
That's about it for now. Our night nurse called out tonight, so I am on the night shift and should get back to work. As always, we hope everyone is well.
Friday, January 06, 2012
Success
I am very happy to report that we are HOME! Casey did amazing. They were able to place the tube in the right ear. I was really worried it was going to become another cholesteotoma. The doctor cleaned out the left ear's cholesteotoma and said that in general it is doing pretty well. We still have to get it cleaned often, but we do not need to start looking into a major reconstruction surgery.
The dentist was going to get some images and do some cleaning. However, we found out that in order to do that Casey would have to be intubated. That was a deal breaker. We decided to cancel that part of the day. Her teeth are doing okay, and we can do with out the images for now. Intubation just adds so many extra risk.
Anesthesia did an amazing job. They were prepared, they listened, and they got us back to our princess as quick as possible. The entire experience today was positive.
When we got to Casey she was still asleep. We sat and waited and a few minutes later she was up and ready to go. After she woke up they gave her some tylenal and had us get her dressed.
Casey was excited to be home. As soon as we got her back to her favorite spot on the couch she started making her happy sounds. She has doctor's order to just rest today (I need those orders). I don't think any of us will have a problem with a nice quiet weekend.
Thank you all for your thoughts and prayers. We really appreciate all of you. Have a wonderful weekend, now that we are home I know that we will :)
The dentist was going to get some images and do some cleaning. However, we found out that in order to do that Casey would have to be intubated. That was a deal breaker. We decided to cancel that part of the day. Her teeth are doing okay, and we can do with out the images for now. Intubation just adds so many extra risk.
Anesthesia did an amazing job. They were prepared, they listened, and they got us back to our princess as quick as possible. The entire experience today was positive.
When we got to Casey she was still asleep. We sat and waited and a few minutes later she was up and ready to go. After she woke up they gave her some tylenal and had us get her dressed.
Casey was excited to be home. As soon as we got her back to her favorite spot on the couch she started making her happy sounds. She has doctor's order to just rest today (I need those orders). I don't think any of us will have a problem with a nice quiet weekend.
Thank you all for your thoughts and prayers. We really appreciate all of you. Have a wonderful weekend, now that we are home I know that we will :)
Thursday, January 05, 2012
Ready for Surgery
We spoke with the hospital today and we are all set for Casey's procedure tomorrow. Her dentist wants to get some images of her permanent teeth (just to have a better idea of what is going on) while Casey is under. The initial ear procedure was scheduled quickly to reduce the window for the ear to get worse. Then we called the dentist just yesterday (I kept meaning to and never got to it). They were able to work together and get it all scheduled. Thankfully we have wonderful doctors that really care about our little princess. We are so grateful that they understand her risks and are will do jump through hoops to get things done in the safest way for Casey. I am not sure what time we will be home tomorrow. As soon as we get back and settled one of us will be sure to post an update. Thanks again for all of the thoughts and prayers.
Tuesday, January 03, 2012
Those Darn Ears
Back in June 2009 Casey went in for routine ear tube surgery. When the ENT got in he found that her left ear had a Cholesteotoma. The doctor put the right tube in and from that point on we had been going in to see ENT every 3 months to have them clean out her left ear. The right tube fell out sometime in 2010 and the doctor has been checking the right ear while we are there to have the left ear cleaned. A few months after the right tube fell out the doctor noticed some negative pressure in the right drum. However, with the extra risk any procedure puts on Casey, he has just been watching it to make sure it does not progress.
Just before Christmas Casey went in to see the ENT. This winter she seems to be getting more ear infections that usual. Ear infections and drainage are pretty common with Cholesteotomas, so we have just been treating them with drops each time. A few weeks ago we noticed her right ear was draining some too and so he took a closer look. We had been able to maintain that right ear's pressure for quite a while. The pressure has increased this winter enough for him to suggest putting a tube back in the right ear. Here's where it gets a little tricky- this is what we did in 2009 and we didn't act quick enough. Between the time he suggested tubes and the time we got Casey in for the procedure, the left ear perforated and advanced to a Cholesteotoma.
We are moving quick this time. Casey is scheduled to get her right tube done on Friday. While she is there the doctor is also going to clean out the left ear really good. He should be able to give us a better idea of how the left ear is doing. We are very hopeful and optimistic that the doctor will be able to get the right tubes placed. There is a chance he will not be able to place it and we will have to start dealing with a Cholesteotoma on that side as well.
Any procedure is scary for any kid, and extra scary for kids with respiratory issues. We will spend lots of time with anesthesia making sure they know what to expect. Casey has had this procedure done at this hospital before and things went very well. Regardless of positive past experiences, we are always a mess until we have her back with us. The ENT knows Casey very well. He is planning to do this with just gas and to avoid an intubation. That is the current plan.
We will try to update late Friday or sometime over the weekend to let everyone know how it went. Please keep Casey in your thoughts and prayers this Friday.
Just before Christmas Casey went in to see the ENT. This winter she seems to be getting more ear infections that usual. Ear infections and drainage are pretty common with Cholesteotomas, so we have just been treating them with drops each time. A few weeks ago we noticed her right ear was draining some too and so he took a closer look. We had been able to maintain that right ear's pressure for quite a while. The pressure has increased this winter enough for him to suggest putting a tube back in the right ear. Here's where it gets a little tricky- this is what we did in 2009 and we didn't act quick enough. Between the time he suggested tubes and the time we got Casey in for the procedure, the left ear perforated and advanced to a Cholesteotoma.
We are moving quick this time. Casey is scheduled to get her right tube done on Friday. While she is there the doctor is also going to clean out the left ear really good. He should be able to give us a better idea of how the left ear is doing. We are very hopeful and optimistic that the doctor will be able to get the right tubes placed. There is a chance he will not be able to place it and we will have to start dealing with a Cholesteotoma on that side as well.
Any procedure is scary for any kid, and extra scary for kids with respiratory issues. We will spend lots of time with anesthesia making sure they know what to expect. Casey has had this procedure done at this hospital before and things went very well. Regardless of positive past experiences, we are always a mess until we have her back with us. The ENT knows Casey very well. He is planning to do this with just gas and to avoid an intubation. That is the current plan.
We will try to update late Friday or sometime over the weekend to let everyone know how it went. Please keep Casey in your thoughts and prayers this Friday.
Tuesday, December 27, 2011
Teeth
Last week was a busy week for Casey. We expected with it being the week before Christmas that it would be slow, but we were wrong. Casey had school Monday and Tuesday. A dentist appointment on Wednesday. Casey saw the ENT and had therapy on Thursday and therapy on Friday.
Casey loves going to the dentist. She always gets excited when we tell her we are going. She did great (as always). The dentist told us that her bottom 4 teeth were all loose and ready to come out. She said that she expected them to fall out by the new year. I thought she was crazy. Turns out she was right. Casey lost 2 today. The first fell out on it's own. Then the second was really loose. Casey kept sticking her tongue out playing with it. Each time she did it fell further and further forward. It was just dangling there and she was making such a drooly mess. I ended up reaching in and it came right out when I touched it. Both teeth are safely tucked under her pillow waiting for the Tooth Fairy now. She is not supposed to grow up this fast!
I'll post more on the ENT appointment later. I have to go make sure that we are on the list for the Tooth Fairy tonight :)
Casey loves going to the dentist. She always gets excited when we tell her we are going. She did great (as always). The dentist told us that her bottom 4 teeth were all loose and ready to come out. She said that she expected them to fall out by the new year. I thought she was crazy. Turns out she was right. Casey lost 2 today. The first fell out on it's own. Then the second was really loose. Casey kept sticking her tongue out playing with it. Each time she did it fell further and further forward. It was just dangling there and she was making such a drooly mess. I ended up reaching in and it came right out when I touched it. Both teeth are safely tucked under her pillow waiting for the Tooth Fairy now. She is not supposed to grow up this fast!
I'll post more on the ENT appointment later. I have to go make sure that we are on the list for the Tooth Fairy tonight :)
Monday, December 26, 2011
Merry Christmas
It's official, Casey LOVES Christmas. She was really into it this year. While we were in the kitchen getting dinner ready, she wanted to come in and be in the middle of the conversations. When we ate dinner, she wanted to sit at the table. When it was time for presents she was wide eyed and ready to go. Usually she is happy hanging back in the living room and away from everything. It was really cute to see her want to be involved this year. She was so excited with every present she opened too.
Most of my family was able to come in and enjoy the holidays with us. It would have been nice to have Tim's family around too, but they are pretty far away. It was nice that most of his family was able to be together. We hope that everyone had a wonderful Christmas. Here's to a happy, safe and healthy 2012.
We thought you all may enjoy some Christmas photos of our little princess.
Most of my family was able to come in and enjoy the holidays with us. It would have been nice to have Tim's family around too, but they are pretty far away. It was nice that most of his family was able to be together. We hope that everyone had a wonderful Christmas. Here's to a happy, safe and healthy 2012.
We thought you all may enjoy some Christmas photos of our little princess.
Tuesday, December 13, 2011
Back to School
Casey is finally recovered enough to go back to school. I was hoping she would go yesterday, but we couldn't get her to stay awake. The antibiotic seems to have helped clear out her lungs some (we are still clearing out a little- but she is feeling much better). Now that she is finally able to get comfortable and sleep she had a lot of sleep to catch up on. Yesterday was a lazy lazy day. This morning she got dressed (against her wishes) and we took her to school. Once she was there she remembered that she likes school. Her teacher brought in a little tree for Casey to decorate for the classroom. Casey had a great time. When we got there to pick her up she was so proud to show it off. I spent the weekend making fudge and getting little gift tins ready for all of her teachers. Most area schools are out on the 16th. I assumed Casey's school was out all next week as well. I was wrong- Casey has school next week. I had another week to get stuff ready. Oh well, at least I am done with teachers now. It leaves me some time to finish up everyone else.
Sunday, December 11, 2011
Update
Last week I mentioned that Casey got sick Tuesday afternoon. Wednesday she seemed like things were going better. We did not have any fevers, and she was pretty alert. Wednesday night she refused to go to sleep. Her night nurse said she finally went to sleep around 12:30. The nurse also mentioned her lungs sounding a bit crackly. The morning nurse noticed the lung sounds as well Thursday morning and they seemed to be getting worse. We also started suctioning lots of nasty looking stuff out of Casey. Needless to say, we made a few calls to doctors.
Casey's pulmonary had us come in for chest xrays. Casey has pneumonia in her right lung. We are pretty sure she was so exhausted after the movie that she fell asleep instead of coughing up the food she had refluxed. When she woke up Tuesday with the spiked fever and I suctioned out a lot of food, I think she had already aspirated on some of it. Aspirations are no fun, but at least they are not contagious. Casey started on an antibiotic Thursday afternoon. The secretions are looking much better already. She is still having some breathing issues. We have added extra breathing treatments that seem to help.
On Saturday Casey was planning on going to her holiday party. She had been looking forward to it for weeks. This is a special party for kids in the Blind Services Program (many of the kids are a lot like Casey). They have Santa and all kinds of accessible fun for the kids. She was doing better, but still sick yesterday morning. She got very excited about going to the party when we talked about it. Since she isn't contagious, and had been looking forward to seeing Santa for so long, we decided to go to the last 30 minutes of the party- just enough time to see Santa. She did great. I was torn on taking her, but I am glad that we did. She LOVES Santa. She told him everything she wanted as soon as she saw him.
We are hoping she is up for going to school this week. She hasn't been since Thanksgiving. She had her ear infection and as soon as that cleared up this started. Ugh! It is the last week of school before Christmas break. We will just have to play it by ear.
We hope that everyone is doing well. Have a great week :)
Casey's pulmonary had us come in for chest xrays. Casey has pneumonia in her right lung. We are pretty sure she was so exhausted after the movie that she fell asleep instead of coughing up the food she had refluxed. When she woke up Tuesday with the spiked fever and I suctioned out a lot of food, I think she had already aspirated on some of it. Aspirations are no fun, but at least they are not contagious. Casey started on an antibiotic Thursday afternoon. The secretions are looking much better already. She is still having some breathing issues. We have added extra breathing treatments that seem to help.
On Saturday Casey was planning on going to her holiday party. She had been looking forward to it for weeks. This is a special party for kids in the Blind Services Program (many of the kids are a lot like Casey). They have Santa and all kinds of accessible fun for the kids. She was doing better, but still sick yesterday morning. She got very excited about going to the party when we talked about it. Since she isn't contagious, and had been looking forward to seeing Santa for so long, we decided to go to the last 30 minutes of the party- just enough time to see Santa. She did great. I was torn on taking her, but I am glad that we did. She LOVES Santa. She told him everything she wanted as soon as she saw him.
We are hoping she is up for going to school this week. She hasn't been since Thanksgiving. She had her ear infection and as soon as that cleared up this started. Ugh! It is the last week of school before Christmas break. We will just have to play it by ear.
We hope that everyone is doing well. Have a great week :)
Tuesday, December 06, 2011
Muppets
Today Casey had a special treat. The movie theater that did her Make-A-Wish a while back has been great about letting us know when they get kid movies. We were all very excited when they told us the Muppet Movie was coming. The theater told us that the best times to come are Monday or Tuesday morning at the first viewing. Tim took off work and we let Casey skip school so we could all go see the movie today. Emily, Casey's nurse, came with us. The movie was great. Casey is not a big fan of previews, but once the singing started with the Muppets she was one happy girl. She stayed awake and alert through the whole thing (all 2 hours). I have to say, I am a big Muppet fan and I think I liked the movie as much as she did.
This afternoon Casey is not feeling well. I hope that getting her out in the cold this morning did not get her sick. She is resting now, and I hope that with some rest this afternoon she will be fine in the morning. She always likes to keep us on our toes.
Friday, November 18, 2011
Getting Ready for Thanksgiving
This year has flown by. I know I say that every year, but they just keep going by faster and faster. I need to find a way to slow things down (good luck, right).
Overall things are going well. Casey seems to have fully recovered from the drug allergy we were dealing with for a while. She is back to causing trouble. School is out next week, and all of her therapist are off as well. It should be a nice quiet week. We have a few things to do Monday and Tuesday, but then we are just going to enjoy the down time.
Casey loves the holidays. She listens to Christmas music all year. I have to admin I love Christmas music too. We plan to put up all the decorations on Friday after Thanksgiving. The lights on the tree always seem to make Casey happy.
I think Casey is in the middle of another growth spurt. Her legs seem a bit more boney than usual and her clothes are all a little short. She is getting so big. It looks funny when I try to carry her around. Her long legs come down past my knees.
That's about it for now. We hope that everyone has a wonderful Thanksgiving.
Overall things are going well. Casey seems to have fully recovered from the drug allergy we were dealing with for a while. She is back to causing trouble. School is out next week, and all of her therapist are off as well. It should be a nice quiet week. We have a few things to do Monday and Tuesday, but then we are just going to enjoy the down time.
Casey loves the holidays. She listens to Christmas music all year. I have to admin I love Christmas music too. We plan to put up all the decorations on Friday after Thanksgiving. The lights on the tree always seem to make Casey happy.
I think Casey is in the middle of another growth spurt. Her legs seem a bit more boney than usual and her clothes are all a little short. She is getting so big. It looks funny when I try to carry her around. Her long legs come down past my knees.
That's about it for now. We hope that everyone has a wonderful Thanksgiving.
Thursday, November 17, 2011
World Prematurity Day
It's hard to believe that just a little over 5 years ago Casey came into our lives. I can't imagine life with out her. Today is World Prematurity Day and I just wanted to write a little something for all of the other families that have, are or will find themselves in the NICU (a very scary place for ANYONE).Doctor's did not give us much (none at all really) hope. The time that we spent in the NICU with Casey was terrifying, felt like it lasted an eternity, and was the most isolating lonely time. We never gave up hope, and our little miracle proved all the doctors wrong. She still has a lot of medical issues and challenges in her life, but she is very much alive. Her personality, her spirit, and even her diva attitude grow bigger every day. Our Casey is an inspiration to everyone that has ever heard her story.
I don't want to tell everyone it gets easier (it really doesn't). But you do learn to adapt. You redefine 'normal' and you adjust goals (yours and your child's). You learn who you can count on, and who you can not. I have learned to treasure EVERY moment. We celebrate little milestones everyday. We may never get to walk or talk, but we focus on what we can do and celebrate the heck out of those events.
To all of the wonderful parents, grandparents, friends, family, etc. out there to preemies and special needs kids, thanks for all you do.
Tuesday, November 01, 2011
Halloween
Casey loves Halloween. She wore her Tinkerbell costume to school yesterday. Her teacher brought in 2 of her puppies and dressed them up as well. After school Casey went to trick-or-treat at all of her doctor's offices. They were all very excited to see her. She had a great time. On our way home from visiting all of her doctors we stopped by my grandparents (her great grandparents) for a short visit. Casey was about to crash by the time we got there so we could not stay long.
After taking a good nap Casey was ready for round 2. We got back into her costume and went trick-or-treating to a few houses in the neighborhood. I was happy to see that there were a few that registered with CLU as homes with non-food treats. Hopefully as this catches on even more homes will think about kids like Casey when getting ready for trick-or-treaters.
Casey was so proud of her Halloween treats. We got home and she snuggled with Daddy while I handed out stickers and toys. When she went to bed there was no fighting at all, she went straight to sleep and slept hard all night. Tinkerbell was exhausted :) It was pretty cute, the glitter on the wings kept shedding. It was like she was leaving a little pixie dust trail behind her.
Rather than just uploading a picture from yesterday, I thought I would show you all how much Casey has grown. Here are Halloween pictures for each year...
After taking a good nap Casey was ready for round 2. We got back into her costume and went trick-or-treating to a few houses in the neighborhood. I was happy to see that there were a few that registered with CLU as homes with non-food treats. Hopefully as this catches on even more homes will think about kids like Casey when getting ready for trick-or-treaters.
Casey was so proud of her Halloween treats. We got home and she snuggled with Daddy while I handed out stickers and toys. When she went to bed there was no fighting at all, she went straight to sleep and slept hard all night. Tinkerbell was exhausted :) It was pretty cute, the glitter on the wings kept shedding. It was like she was leaving a little pixie dust trail behind her.
Rather than just uploading a picture from yesterday, I thought I would show you all how much Casey has grown. Here are Halloween pictures for each year...
 | 2006- Casey was a little bunny. I think she wore this costume all of 20 minutes. We had just enough time to snap a few pictures then she as mad and wanted out :) |
 | 2007 Casey had her foot surgery early October, so we had to work with 2 full leg casts. Tim found a glow in the dark skeleton shirt and it was perfect. |
 | 2008 Casey was a blue flower fairy. She picked it out all by herself. We took Casey to a costume shop and she shocked us all. She was very into yellow at this time so the blue was a surprise. She was a beautiful blue fairy. |
 | 2009 was a tough Halloween. Casey had been sick for about a week before. We ended up in the hospital the next day were we stayed until early December. She was not up for wearing the Minnie Mouse costume, but she tolerated the ears long enough for a picture. |
 | 2010 Casey insisted on being a nurse. We had little scrubs made with her name on them and everything. She had a great time visiting her doctors and dressing up. |
 | 2011 Casey chose Tinkerbell. She has been all about princesses and fairies this year. She picked Tinkerbell right away and I think she chose well. She helped me make little puff ball socks and everything. |
Saturday, October 22, 2011
Making a Splash
Casey was so excited to get back in the pool this week. When I went to get her out of bed I asked her if she wanted to swim she threw her arms up and started making her happy noises. One of her little friends was in the pool this week too. She loves to swim with her friends.Casey went back to speech and occupational therapy this week too. She was happy to be there, but got kind of tired. She did good though.
The therapist are working with Region XIII now to try out new technology (tools like switches) with the kids they treat. They are going to try a few over the next couple weeks to see if we can find an even better fit for Casey's needs. I am excited to see what they find.
Casey is getting ready for Halloween. As long as she is up for it, I think she is going to check out the CVS Trick-or-Treat tomorrow. As always, we hope everyone is well.
Thursday, October 20, 2011
Slow and Steady
Casey has been off of the "bad" medication for a little more than a week now. She is slowly starting to get back to her usual self. She finally went back to school on Tuesday. She is going to get back to her therapies this week too. She still has some tough spots off and on during the day (and night), but we are getting there. I remember coming off the last bad tone medication taking a while too.
Casey's Tinkerbell costume came in this week. It is so cute. She is going to be the cutest little fairy ever.
That's about all for now. If you have not already, be sure to take part in CLU's Trick-or-Treat Project. It only takes a little effort to make a BIG difference. Be sure to help spread the word too. Have a great day!
Casey's Tinkerbell costume came in this week. It is so cute. She is going to be the cutest little fairy ever.
That's about all for now. If you have not already, be sure to take part in CLU's Trick-or-Treat Project. It only takes a little effort to make a BIG difference. Be sure to help spread the word too. Have a great day!
Monday, October 10, 2011
Drug Allergies
It has been a little while since we have added a drug to the allergy list for Casey. Sadly, we now have one to add. Back in August we started a new medication that was supposed to help with tone. Casey is so stiff. We started with her hips dislocating due to stiffness, then knees, now her elbows are also dislocated. There have been a few different drugs (including Botox injections) that we have tried over the years. Some just never worked so we stopped using them. Some caused muscles to relax in the wrong way and lead to breathing issues. The latest on our list of ineffective tone medications is Dantrium.
We had to build up to a full dose. This took all of August. We noticed right away that Casey's wet diapers were much less frequent. We decided we could deal with that, at least she was still going. Then around the time we got to full dose we noticed we were suctioning a LOT more than usual. After a couple weeks of increased suctioning we noticed her gtube was leaking more than usual as well. This let us know that reflux was most likely the cause of both. We tried to give her more breaks in feeding, but it did not help at all.
About 3 weeks ago we noticed the gtube drainage was looking dark (coffee grounds). This indicates a GI bleed. We learned all about GI bleeds almost 2 years ago exactly when we were last in the hospital. Luckily since we knew what it was, we were able to act on it. We have a medication for Casey to help counter act the bleed. It coats her stomach and also helps reduce reflux and nausea from the blood. We started this as soon as we noticed the drainage.
After about a week of dealing with the bloody drainage, we noticed Casey's heart rate was getting higher and higher. This indicates a couple of things, pain, fever, or dehydration. Her fever was never high enough to cause the elevated heart rate. We tried giving her fluids, but they did not help at all. Finally about a week ago we realized we were not making it any better and it was time to call the doctors.
As it turns out, the dantrium has a list of side affects that include- GI bleeding, urinary retention, and abdominal pains. The next step was to get her off the medication. Dantrium has withdrawal issues, so we have to ween her off. If we just stopped it could add even more problems. Casey's neuro is helping us ween her off. While we are weening her Casey's GI doctor has increaded the medicine used to counter act the bleed. And Casey's palliative doctor is giving us some strong pain medication to help keep Casey comfortable and get the heart rate back down.
It has been a long few weeks. The bleed does seem to be a little better, and we are getting some wet diapers again. Casey's last dose of Dantrium will be on Wednesday. We are still having some trouble with her heart rate, but the doctors are helping us.
Casey has missed a lot of school and therapy since she has been feeling so bad. I was hoping to get her back on schedule this week. It is looking like it may be another week before we are back to normal. I will post more when we get her off this drug and hopefully back to her usual routine. Until then, we hope everyone is doing well.
Be sure to check out CLU if you have not already. There is still time to participate in the Trick-or-Treat Project :)
We had to build up to a full dose. This took all of August. We noticed right away that Casey's wet diapers were much less frequent. We decided we could deal with that, at least she was still going. Then around the time we got to full dose we noticed we were suctioning a LOT more than usual. After a couple weeks of increased suctioning we noticed her gtube was leaking more than usual as well. This let us know that reflux was most likely the cause of both. We tried to give her more breaks in feeding, but it did not help at all.
About 3 weeks ago we noticed the gtube drainage was looking dark (coffee grounds). This indicates a GI bleed. We learned all about GI bleeds almost 2 years ago exactly when we were last in the hospital. Luckily since we knew what it was, we were able to act on it. We have a medication for Casey to help counter act the bleed. It coats her stomach and also helps reduce reflux and nausea from the blood. We started this as soon as we noticed the drainage.
After about a week of dealing with the bloody drainage, we noticed Casey's heart rate was getting higher and higher. This indicates a couple of things, pain, fever, or dehydration. Her fever was never high enough to cause the elevated heart rate. We tried giving her fluids, but they did not help at all. Finally about a week ago we realized we were not making it any better and it was time to call the doctors.
As it turns out, the dantrium has a list of side affects that include- GI bleeding, urinary retention, and abdominal pains. The next step was to get her off the medication. Dantrium has withdrawal issues, so we have to ween her off. If we just stopped it could add even more problems. Casey's neuro is helping us ween her off. While we are weening her Casey's GI doctor has increaded the medicine used to counter act the bleed. And Casey's palliative doctor is giving us some strong pain medication to help keep Casey comfortable and get the heart rate back down.
It has been a long few weeks. The bleed does seem to be a little better, and we are getting some wet diapers again. Casey's last dose of Dantrium will be on Wednesday. We are still having some trouble with her heart rate, but the doctors are helping us.
Casey has missed a lot of school and therapy since she has been feeling so bad. I was hoping to get her back on schedule this week. It is looking like it may be another week before we are back to normal. I will post more when we get her off this drug and hopefully back to her usual routine. Until then, we hope everyone is doing well.
Be sure to check out CLU if you have not already. There is still time to participate in the Trick-or-Treat Project :)
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