Casey
Latest News
Long Overdue Post
Author: MartyDate: Monday 06th of February 2012 09:56:00 PM
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.
Success
Author: MartyDate: Friday 06th of January 2012 01:57:00 PM
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 :)
Ready for Surgery
Author: MartyDate: Thursday 05th of January 2012 06:21:00 PM
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.
Those Darn Ears
Author: MartyDate: Tuesday 03rd of January 2012 05:31:00 AM
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.
Teeth
Author: MartyDate: Tuesday 27th of December 2011 06:27:00 PM
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 :)
Merry Christmas
Author: MartyDate: Monday 26th of December 2011 10:59:00 AM
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.
Back to School
Author: MartyDate: Tuesday 13th of December 2011 10:15:00 AM
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.
Update
Author: MartyDate: Sunday 11th of December 2011 10:55:00 AM
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 :)
Muppets
Author: MartyDate: Tuesday 06th of December 2011 02:49:00 PM
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.
Getting Ready for Thanksgiving
Author: MartyDate: Friday 18th of November 2011 12:32:00 PM
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.
World Prematurity Day
Author: MartyDate: Thursday 17th of November 2011 08:40:00 AM
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.
Halloween
Author: MartyDate: Tuesday 01st of November 2011 09:34:00 AM
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...
 | 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. |
Making a Splash
Author: MartyDate: Saturday 22nd of October 2011 08:36:00 AM
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.
Slow and Steady
Author: MartyDate: Thursday 20th of October 2011 08:56:00 AM
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!
Drug Allergies
Author: MartyDate: Monday 10th of October 2011 01:34:00 PM
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 :)
Welcome to CLU
Author: MartyDate: Friday 30th of September 2011 10:30:00 AM
I am so excited to announce a new campaign. You can link to the new site from Casey's menu - CLU. We will still be posting all of Casey's stuff here.CLU is set up to provide people with ideas and projects to encourage inclusion in our communities. Our kickoff event is the Trick-or-Treat Project. There are so many kids that are excluded from Halloween traditions. When you participate in the Trick-or-Treat project you are including many kids that are often left out (like Casey). Check out the site, like us on Facebook, and spread the word.
Over the River...
Author: MartyDate: Wednesday 14th of September 2011 10:46:00 AM
Nope, no river, no woods, just a few blocks for Casey to get to her Great Grandma & Great Grandpa's new place. My mom and John came in this weekend and helped us get my grandparents moved in to a great new place right around the corner. It is so great to have them close by (no more driving to Temple to see them). It made for a busy holiday weekend.
Casey had a busy day yesterday. She started off with school. She did great, she answered all of the questions and participated for the full time. Then she had an ENT doctor appointment. She hates to get her ears cleaned :( It is not fun for any of us. No matter how bad the 5-10 minutes of cleaning are, they don't compare to what she would go through to have the cholesteotoma reconstructed. I will take a few minutes every 3 months instead of surgery any day. Yesterday evening we finished the day with Casey's first trip to see my grandparents new place. She was so tired when we got home.
We are about to head to see the pulmonologist. Hopefully this will be a quick and easy appointment. Then we have about a month with out any more doctor appointments. As always, we hope everyone is doing well.
First Day of School
Author: MartyDate: Monday 29th of August 2011 04:18:00 PM
Casey started back to school today. She had a great day. Her teacher met us at the car and started with a tour of the school. Last year Casey went straight to her classroom so she never really saw anything else. She LOVED the library. Her teacher is going to find a time when Casey can go back and check out some princess stories. After the library Casey visited the gym. There was a class listening to the coach give instructions. When Casey noticed the class she yelled, loud, as if she were saying "Hi guys, I'm here!" It was pretty cute.After the tour Casey made it to her classroom. The sensory area was ready. Officially the sensory area, unofficially it is called the princess tent. There are a lot of special tools that light up, and respond to sound and motion that are great for keeping Casey's attention. The school put up a black out tent around a corner of the room. The top of the tent is actually a parachute with neon yellow stars. Then, in order for it to not just be a boring black tent, Casey's teacher wrapped it in sparkly fabric. The sparkles are princess approved :)
Casey had fun being inside the tent. She really likes the stars on the roof. She was able to spend some time in the tent and fully check things out. She was making me laugh the entire time I was there. She kept making her happy sounds every time she saw something new.
I think it is safe to say Casey loves school. She is such a good student, and she works so hard while she is there.While we were doing the tour there was a little girl (may 7-8 years-old) that came out of her way to tell Casey how pretty she looked. It was so sweet. The camo outfit that Casey wanted to badly came in on Friday. She was able to wear it on her first day afterall. I am sure the little girl telling her how pretty she looked in it only made Casey love the camo even more.
Who knew Casey would like camo?After we got home Casey was exhausted. She took a good nap. I think she is excited for a new school year. She will be going back tomorrow for another adventure.
We hope everyone is doing well. Have a great school year to all the school kiddos out there.
Back to School
Author: MartyDate: Tuesday 23rd of August 2011 11:21:00 AM
Our school district started back up today. We talked with Casey's teachers and decided it would be best to avoid the craziness of the first day. The plan was for Casey to start back tomorrow. I just got off the phone with her teacher though, and her teacher has gotten sick. Instead of trying to get a sub for the first day (that would not know Casey) we decided to wait until next week for Casey to start back to school.
A few extra days actually works out well. Casey had a GI appointment this morning (she is up to 31.8 pounds now). After we took Casey to pick out some school clothes. She found a few things that were okay, but the one outfit she really wanted was not in her size. When I told her she could not have it she was so upset. She refused to even look at anything else. I ordered it when we got back home. Maybe since we won't start school tomorrow it will be here in time for her to wear it on her first day back. She is such a little fashionista. Her usual look is purple and/or pink. Every now and then she throws me off though. Last year she had to have a blue dress. I think even today that is the only blue thing she has ever picked. Today it was camo. She had to have a green (traditional camo) tutu with a graphic tee. I guess since they were all out of her size she is not the only one that wants it. She makes me laugh sometimes.
We have a couple of new switches we are trying out. A few extra days at home should give us some time to get a better idea on if we like them or not too.
I will post some pictures next week of Casey going back to school. We are going to start with 4 hours a week and build to the 6 hour weekly total. I am not sure how we will split them up. We will wait and see how Casey responds. Until then, have a great rest of the week :)
Special Needs Dance
Author: MartyDate: Thursday 11th of August 2011 10:17:00 AM
For any of the special needs family that read this blog, I want to be sure you know about 2Dance2Dream by Legacy of Hope. I LOVE this idea. They will work with your child's ability and needs (all types). Premier Dance in South Austin has teamed up with Legacy of Hope to offer dance class to special needs kids. There will be a recital at the end of the program. All of the classes, costumes, everything is included at no cost to the families. The classes start next week, so if you are interested sign up as soon as you can. There are a few spots left, but they may fill up quick.
This is one of many programs Legacy of Hope is offering. Currently they also offer tutoring and respite. In 2012 they will be adding family counseling, art, and music.
July Review
Author: MartyDate: Thursday 04th of August 2011 01:10:00 PM
July was a hectic month for us. Tim had to travel for work one week. Our day nurse had 2 weeks off (luckily not the week Tim was gone) and our night nurse had a week off. There were 2 weekends our weekend night nurse had vacation too. I really miss Tim and our nurses when they are not here. August is getting back on schedule. We are still catching up a little on things that got pushed off last month, but we are close to being back.On Monday Casey had a fun outing. One of her nurses and I took her to a place where she was able to paint and decorate her own pottery. They had mosaics as well, but Casey wanted to paint not tile. She painted a lovely bowl for her Daddy's birthday. We will pick it up on Saturday. She liked that we went on a "Secret Mission" too. She didn't tell him about it until his birthday. It was really cute.
Last week Casey had a neuro appointment. It was just a follow-up. We did end up changing and adding some new medications to try and help with stiffness and seizures. We are slowly ramping up the dose. It will take 6 weeks to get to her full dose. So far it is too soon to tell if it is going to help or not.
Casey got fitted for new AFOs this week. She picked purple butterflies this time. We should be able to get them in about 2 weeks. Her last pair just did not work for her. I hope this pair does better.School starts later this month. I am sure I will start working with her school in the next few weeks to get her new schedule worked out. I think we are going to start with 4 hours a week (2, 2 hour sessions) then build to 6 hours. That means we need to go school shopping too. Casey loves to buy clothes. She is such a little fashionista.
That's about it for now. As always, we hope everyone is well.
Casey's Fun Day
Author: MartyDate: Friday 15th of July 2011 01:12:00 PM
We have been so busy this summer. We have a few weeks with fewer appointments so we decided to have some fun activities planned for the princess. Today we met some friends for lunch at Casey's favorite restaurant. Her friend made her a beautiful bracelet with beads and pasta. In the picture they are modeling their matching bracelets. Very cute :)I have never been able to figure out why Casey loves this restaurant so much. I noticed on our way out today a few other tables with special needs. I think it is located between a couple schools for special needs. The staff is always very accommodating. We just ended up there once, and now every time Casey goes to lunch this is where she wants to go.
After lunch we went downtown. Casey was able to listen to story time at the Children's Museum. They read four stories. Casey payed attention and seemed to really enjoy all of them. After the stories we checked out the rest of the museum. She was not quite as into the rest. It was loud, and crowded. I think between being out of the house for a while and all the noise and people it was just too much for her. I picked her up for a little bit and she calmed down. When we asked if she wanted to go home though, she gave a definite "YES". On the way to the car she saw a waterfall (in the city hall parking garage of all places) that she thought was kind of cool.
Casey talked the whole way home. I think she had fun. It is still "Casey Day" so she is watching movies now. Hopefully we can find some more fun stuff to do in the next few weeks before her schedule fills back up again.It was soooo hot today. I think it is the 14th or 15th consecutive day of 100+ degrees. Maybe we will get lucky with some rain and a break in the heat for our next outing.
You can kind of see the small white pillow behind Casey's pink pillow in the pictures. It stretches down to her waist and forms around her body (sort of).
Have a great weekend.
Pillow
Author: MartyDate: Friday 15th of July 2011 07:10:00 AM
We got Casey's new pillow on Thursday (6/30). The rep met us at therapy and he and Margaret helped me and Casey's nurse make a bunch of adjustments to the pillow and her chair. The pillow was much smaller than I expected. It does help. I think Casey is much more comfortable and she is not laying on her arm turning it blue anymore. However, I don't want other families out there to think the pillow is a magic cure to positioning issues. I am glad we got it. We are using it. Each time we load Casey we are still making adjustments. We are going to try it out for a little while. We may end up trying a bigger a size. I don't know yet. I didn't take any pictures during the setup (Casey was not happy). I will try to post something soon to show it in use. It looks like a small white pillow. Unless you squeeze it, you would not know it is anything more. It has a terry cloth cover, and the inside feels kind of like a combination of a bean bag and an air mattress. I am going to wait until I have a better idea if it is a good fit before I add it to our review section. I will post more soon. As always, we hope everyone is well.
Casey's Jams
Author: MartyDate: Monday 27th of June 2011 08:03:00 PM
As many of you already know, Casey LOVES music. A while back she was very into hip hop. Which was really funny as no one around her was listening to hip hop, and we had no idea where she got it. A friend of ours turned us onto an album that we played many times of the years. It is hip hop beats to nursery rhymes. Casey thought it was so funny- Baby Jamz Vol. 2. If anyone is looking for a change to the regular nursery rhymes, I highly suggest it.
Lately Casey has been listening to Pandora a lot. She has a bunch of different stations that play a variety of songs. This weekend we added the "Alvin and the Chipmunks" station. I have been very amused. So amused, I had to share. There is lots of chipmunks, and some party, upbeat type music (Katy Perry, Black Eyed Peas, etc). Then of course the expected Sponge Bob, Veggie Tales songs. There is one set of songs that I had never heard of before, but I love them. If you have not heard of Gummibar, check him out. It is like club music meets Sesame Street. He has a bunch of songs, and they are all hysterical. Apparently he is a YouTube sensation. I had never heard of him. Casey and I are a huge fans now.
Highlight
Author: MartyDate: Monday 27th of June 2011 05:01:00 AM
Casey was picked as this month's Highlight story on Hand to Hold. If you are on Facebook you can "like" the story.
Also, the next Lunch and Learn has been set. If you are interested in attending please be sure to RSVP.
Casey has a new pillow system that we are getting fitted Thursday. It should make positioning in her wheelchair a lot easier. We will be sure and post some pictures later this week, as well as an updated Review of the item.
Also, be sure and check out Downloads. We have added a few new files recently.
I will post pictures and more after Thursday. Until then, we hope everyone is doing well.
For older posts, please try here