Poor Casey

Last night around 12:30 I noticed some red spots on Casey's shoulder. I was worried that something had bit her so I grabbed a flash light to take a closer look. I did not want to turn on the overhead light since she was asleep. When I started looking with the flashlight I noticed the red marks were not just on her shoulders, but her entire chest, thighs, shoulders and neck were all covered in red whelps. It looked awful. I woke Tim up and we covered her eyes so we could turn on the big light. It just looked so bad. She never woke up, but something was wrong. We checked her vitals (heart rate, oxygen saturation, temperature, etc). Everything looked good, except her skin.

I gave her some Benadryl (one of the few advantages of the G-Tube is you can feed/medicate without having to wake up the baby). After about 30 minutes the whelps were gone.

All day today Casey has been so fussy. She spiked a little fever around lunch. With some Tylenol the fever came back down. She just was so upset all day. We even had to cancel her water therapy today. I hate having to cancel things she loves. Around 4 we were running out of ideas. We decided to give her a bath a little early. Maybe the bath would calm her down a little. After we got her stripped down her nurse noticed a spot on her back. It looks like something did bite her last night. There was 1 big and 2 small areas that I think are bite marks. After her bath we put some Cortizone on the bites. She finally started to chill out. Poor thing. I think her back must have been itchy and bothering her all day.

I have no idea what got her. We were in bed next to her and we were both fine. I just changed the sheets and could not find anything there. We have seen the occasional spider but that's really about it. We have a treatment done every couple of months to be sure that we don't have anything, and when we do see spiders we have them come out right away. I really have no idea what bit her. It doesn't seem infected or bad today. She just had a weird reaction to it last night. The itch cream seems to be all she wanted.

Maybe next week we can get her in for an extra pool trip. We will have to see what we can do.

That's about it for now. As always, we hope everyone is doing well.

Busy Busy Girl

What a week Casey has had. She had therapy on Monday. A doctor appointment followed by labs on Tuesday. PT followed by water therapy Wednesday. A play date on Thursday. 2 therapies on Friday. Family came in on Saturday for a family party (delayed Mother's Day and my sister and my birthdays).

Casey's cousin, Riley came in with her Aunt Molly from Fort Worth. Riley is 4 and they have a lot of fun together. Her Cappy and John stayed over so her Aunt Megan came back today so we could all have brunch together too.

I have got one tired little girl. I think she had a really fun week. She just got finished with her bath. Afterward I gave her her nightly medicine and she is crashed on the couch. Poor little party girl, she wore herself completely out.

Not a whole lot going on this week. Just therapies (including water therapy). I think we will rest up over the next couple of weeks. We have to start getting ready for her ear tubes and Botox coming up on June 12th. As always, we hope everyone is doing well.

Play (Sleep) Date

Casey sort of had a play date today. Her friend Maya and my friend (Maya's mom) Elizabeth came over for a little while this afternoon. Casey must still be tired from all her fun yesterday. She fell asleep right as her guest arrived and she did not wake up until they were about to leave. Poor Casey. I had been telling her all about her play date and getting her so excited, then she missed it. Hopefully we will be able to do it again soon. Either way it was good to see Maya and Elizabeth. For the time that Casey did wake up I think she had fun.

Water Therapy

Casey did so great at her first water therapy today. She really loves the water. At first the therapist (Margaret) tried to use the floaty collar. Casey was not having that. Once she got the collar off Casey was so happy. She got to kick, walk on the bottom, float, play in the jets, ride a noodle horse, all kinds of fun stuff. Maritza took a bunch of pics. If you want to see more of Casey's exciting day you can see them on her Flickr page. We can't wait to go back next week. Such a little fish :)

There is a video from today too, and one from her coloring a few days ago. She just learned how to make drawings for us.

What a Day

So Casey had a GI appointment today. No big deal. We went in and overall everything went pretty good. Casey has still been really leaking around her GTube. Also, the wound around the tube still won't heal. The doctor ordered a bigger size. I really hope that does the trick. We had to get some blood work done. After we left the doctor on the second floor we went up to the third to get her labs drawn. The lab was insane. There were so many people and kids just yelling and going crazy. Then a kid would come out screaming from being poked. It was a mad house.

We finally made it to the back. The tech had a hard time (as usual) getting blood from Casey. He was able to get it in the second poke, but each poke was pretty long and drawn out. We have to stay on top of labs, especially with all the meds she is on, but I really hate getting them drawn.

After the lab we loaded up the car to head home. We stopped real quick to grab a late lunch on the way home. When we got home Tim had left some of his tools in the garage. I didn't see a hose and crushed it with the van.

I can not believe what I did next. We have had a GTube on Casey since she was 1 month old (almost 3 full years now). I have always heard people talk about them getting ripped out and popping and all the other things that can happen. We are SOOO careful with Casey's. She had on her extension (a line from the GTube that plugs into food and medicine sources) and I was pretty sure I had moved it to her lap. I don't know what happened. I picked her up out of her car seat and felt wet on my leg. I looked down to see her food making a big mess. When I looked closer I saw I had somehow pulled the entire thing out. OMG!!! Panic!!!!

Tim had come out to help us unload and so he and Maritza got her stuff and I just rushed her to the couch. She never really yelled. It wasn't bleeding either. She looked and seemed fine. Luckily we had an extra GTube. We got the extra one open and put it in. We will keep an eye on it over the next couple of days to be sure it's okay. So far so good. I just can't believe I did that. We are always so careful to avoid that very thing.

The fortunate part of the accident is that since she has been having so many issues lately I had actually deflated a lot of the balloon. She usually has 5-8cc of water. I had only been using 2-3 over the past couple of weeks. So luckily with less water the balloon was a bit smaller. The doctor had just ordered a bigger size so we have another one coming too. So it could have been worse. It was still bad. I am so mad at myself for doing it. But it could have been worse.

Between Casey and Tim's tools I think I have done enough damage for one day. I think I will stay inside for the rest of the day. Casey has her first official water therapy tomorrow. I am sure she will love it. We will get lots of pics. As always, I hope everyone is doing well.

No Pool :(

I was hoping to post pictures of Casey in her first water therapy today. Sadly she woke up with a bit of a tummy bug. Her therapy was at 2, but after a few hours and MANY diapers I decided to reschedule. They could not fit us in later this week so we ended up canceling until our appointment next Wednesday afternoon. The worst part was that by 2ish she was doing much better. She may have been okay. Her nurse had to take the day off so if we did go I wasn't sure how we would get her there anyway, so maybe it was best to wait until next week. Anyway, she is feeling better. That's all that really matters. She has GI next week on Tuesday then we will hopefully really start water therapy on Wednesday. I will post pics once we get there.

Talented Tim

So Casey out grew her diaper stand around age 1. With her being so long and so stiff there was just no way to get her on the standard baby changing station. We have been making due with the floor, beds, etc. All of the beds in the house have the mattress pads on because changing her on the bed has led to many accidents.

We have been trying to come up with a better solution for a while. In our bedroom there is a big bay window. This was just wasted space. We knew that this was the best place to put something, just what?

I am very fortunate to have a talented husband. Tim spent a few weekends and evenings in the garage with his power tools. I think what he built came out so wonderful. We ordered a pillow tow, but he did all the base work.









A lot of window seats have flip lids to get in for storage. Being that we want to use this as a diaper stand for Casey we really wanted open accessible storage. Tim made some really deep cubbies that are perfect. We can store all of Casey's diapers, wipes, blankets, drool cloths, wedges, etc. I am so happy; this makes storage and diapering so much easier.






In addition to using it for diapering we also can use it for getting her dry and dressed after her bath. You can barely see her hand and head sticking out of the towel, but here she is using her her new bench after her bath.









This picture has nothing to do with the bench, but she is just too cute not to post it :)

We're Home

We are back home. We took a little "vacation" yesterday. In order to get Casey into the Medicaid Waiver programs we had to do a 24 hour stay in a nursing home. We tried to make it as fun as possible for Casey. We called it a vacation and acted like we were headed somewhere fun. It was not the best vacation I have ever had. I think we may need to get a new travel agent :)

We had to drive about 90 minutes NNW from home. Casey really doesn't like rides at all, much less rides more than 20 minutes. She was awake the entire ride over. She wasn't too fussy, thankfully. She luckily did not have any dirty diapers in transit either. She needed suctioning, but she was actually pretty good. We put her Elmo in Grouchland movie on and that helped distract her a little.

After we got to the home we took Casey straight in to her (our) room for the night. She and I got settled in while Tim went to the office to do some paperwork. We do SOOOO much paperwork. Once Casey was settled in and had her wedge (pillow) she crashed. She took a good hour or so nap.

Everyone at the home was very nice. They were ready for Casey's stay and were very accommodating. The staff was great. The home, not so great. It was very old, and very run down. The staff made it as nice as they could. There is only so much that can be done though. The room we were in had really old, nasty carpet. Anyone that knows me knows I have a thing about gross carpet. It was really hard to get over that one. It was just one night though. The room had a twin medical bed set up for Casey and a full size bed for Tim and I. It was really nice that they had a bed for us, but it was in bad shape. When you sat or laid on it you could feel the springs poking up from inside. Casey's bed was in better shape. The staff tried hard to make the room nice. They had bedspreads on the beds and curtains on the window. They put some fake plants around the room. They tried, and they did they best they could do with what they had.

Casey and I are both VERY hot natured. Poor Tim is always freezing at home because she and I both need the AC and fans on all the time. No heaters! The room we were in had AC, but it did not seem to be working. The staff warned us that the room could get warm. They were more than right on that one. We ended up stripping Casey down to just a diaper pretty quickly after we got there. She and I were just sweating nonstop. I HATE that feeling. Even Tim was complaining about the heat. We left the hall door open a crack to try and get some of the air from the hallway. It did not help much. We even opened the window. There was NO breeze so the window did not offer much help either. The heat was miserable. I felt like one of the people you see on movies in the deep south sleeping on porches in hopes to catch any chance of breeze (usually not being that lucky). In the movies they always show them glistening in sweat and using anything available to fan themselves. Tim and I took turns fanning Casey with some papers we had. Not many three-year-olds have their own heralds.

I decided to lay with Casey in the twin bed. She is used to cuddling up to me at night and I did not want her to be scared in a new place. There wasn't much room so I ended up sleeping curled up across the top (where the pillows go) and had my legs hang out over to a chair next to the bed. This gave Casey plenty of room to stretch out like she likes. Tim took the big bed. This would usually work out totally to his favor, but I think I got the better end this time. His bed was awful. I didn't even like to sit on it.

Around 5 they brought in dinner trays for Tim and I. We did not expect dinner so this was actually a nice surprise. They gave us a choice between pork stir fry or corn dogs. We both chose corn dogs. At 5, they delivered 2 pork stir fry trays to the room. The rice was okay. The veggies on the side were cooked to a mush. The pork was okay, but there were a lot of fatty parts that couldn't be eaten. We both picked at what we could, then Tim went out to get us another dinner.

After Casey got her breathing treatments and nightly meds she was pretty tired and went right sleep. Tim was not far behind her. I can't sleep in heat so I was in for the long haul. I had my arm behind Casey and every so often she would wake up and roll back looking for me thinking all of me was back there not just my arm. I would assure her I was still next to her and she would go back to sleep.

When we first got settled we heard a train come through. The tracks were right outside the building and the train roared through shaking the whole place. The air filled with the loud warning whistle as it blew through. We hoped this was a track that kept early hours. We were wrong, it ran all night, every 2 hours. The first couple of passes woke Tim and Casey. As the night wore on they both built up an immunity to the waking rumbles.

Just before 6 Tim joined me in watching the clock. We had to stay until 7:30. We were almost there. We heard the nurses come in for shift change. Once people were stirring in the halls we figured the doors must be unlocked (we were locked in as of 9:PM). We went ahead and loaded the car so that at 7:30 we could just go. Loading the car did not waste must time. Casey woke up while we were loading so we got her dressed and ready to go as well. We still had 45 minutes to wait. Around 7 they brought in 2 breakfast trays. I am not sure if the food was bland because many of the patients there have dietary needs or if the food was just bad. We had slices of ham served with scrambled eggs, a biscuit, grits or oatmeal (we are not sure which it was), a fruit bowl, milk, coffee, water and a cup of orange juice. All in all it seemed pretty good. At least it looked better than dinner. The ham was a little tough, edible, but tough. The eggs were horrible. I am not sure what they did to them, but they did not even taste like eggs. We were scared of the grit/oatmeal bowl. The fruit was okay and the biscuit was small but okay. Definitely better than dinner, but far from good.

7:30 finally came and we were free to go. As we left the staff was so nice. They all wished us well as we made our way to the car. They were so great, the home was just so bad. We are done with this step though. Now we are in the system and we should not have to do anything like this again.

On our way home I don't think I have ever been so happy to see a Starbucks. The mocha tasted like freedom and promises of clean future. I feel bad saying the place was awful when everyone was so nice. Their good just can't out weight the buildings bad. It was so bad.

Casey was so tired. She slept the entire way home. She didn't even wake when we pulled in and parked the car in the garage. Poor baby, she had a long night. I am sure she will sleep good tonight.

One of my biggest fears is something happening to Tim and I and Casey ending up in a place like that. I worry a lot about what will happen to her if anything happens to us. Spending the night in the home did not do anything to help ease my anxiety. If anything I am even more stressed than before. Tim and I have talked a lot since Casey's birth about this very concern. I think this "vacation" has lit a fire under us. We are going to set up some time with a lawyer and make sure that all of the procurements are in place so that Casey will be taken care of the way we want. I think all of us will feel much better once that's finalized. It's such a depressing thing to face, but it's necessary. We have to make sure she is cared for first and foremost.

As we laid awake in drowning in our sweat watching the clock Tim and I agreed; our next vacation will be to a much quieter location.

Casey is 3

I think Casey had a good time at her party Saturday. Most of her Texas family made it over and her Grandma Barnes and Uncle Larry came in from Indiana. Most of her therapists and her nurse made it too. It was a really nice turn out.

Casey's Grandma Barnes and Uncle Larry came in on Thursday and were able to stay until Sunday morning. We had not seen them in a while. They were amazed at how much Casey has grown. I am glad they were able to come in to share Casey's special day.

We are so sad that all of the ECI therapists are not going to be able to work with Casey anymore. Most of them made it to the party. It was really nice to have a fun day with them at the end of their sessions. I really hope they all stay in touch. I know Casey will miss them a lot (so will we).

All week long Casey practiced singing the birthday song. We would sing it to her and have her chime in when we say her name. At the party she did soooo good. Just like she had practiced. When everyone sang her name she joined right in, and loud. It was so cute. I think everyone stopped singing for a second to praise her.

Casey's nurse, Maritza, brought her little 10 month old girl. Casey really liked the baby. She just watched her. Everywhere the baby went, Casey watched. We put them on the floor together for a little bit.

Finn, a little friend of Casey's, was really sweet. He answered the door for us to greet all of Casey's guests. Then he helped with presents. We did not have a lot of kids this year. We decided to keep the party a little smaller and just had family and Casey's caregivers. It was a good size. I really think Casey had a great time. She was glad to spend the day with her guests.

We had put 12-4 for the time, but Casey fell asleep a bit after 2. She played so hard that she just wiped herself out. We got finished with cake and saw her starting to get tired. We decided to go ahead and do presents. As soon as we finished we put her down on the couch and she was out in a few minutes. Parties are hard work.

Casey spent the rest of the weekend playing with all her new toys and books and checking out her new clothes. She is such a little diva. She loves clothes.

We are heading to the nursing home tomorrow afternoon for our 24 hour stay. The weather is really nasty right now. I hope that it is nicer tomorrow. I don't want to have to drive with her in bad weather. We have that tomorrow then an intake (4 hours long!) with MHMR when we get back. The intake is just me. Casey will get to stay home with her nurse. I think that is about it for now. Thanks again for all the birthday wishes from everyone. It is nice to know so many people are thinking about her and wishing her well. As always, we hope all of you are doing well.

Be sure and check the flickr link at the bottom of her Photo page for more birthday pics. As I get them from family I will add to them.

So Busy

We have been jumping through hoops over the past month (+) dealing with our insurance company. They denied medication that Casey needed, then soon after that they denied her nursing care. I was beyond stressed about the nursing care. I won't go into too many details but it basically came down to a few things. We only use 32 hours a week instead of 100+ like some families. This sent up a flag at the insurance company saying if we don't need it around the clock we must not really need it at all. So frustrating! We want to be Casey's parents. We want to raise her. We took 32 as the smallest number of hours where we felt she would still get the care she needs as well as time with us. There were a few other really silly things too. Because Casey is not text book or doesn't have the exact equipment they look for they put her in a non-skilled need. UGH!!! We need VERY skilled. Her nurse now actually said she has worked with many patients, even those with 100+ hours and that Casey, she feels, requires the most skilled care. It's just so hard to deal with insurance when they don't actually know Casey and are going on paperwork and generic guidelines alone. Luckily after many hours on the phone with insurance, doctors, Tim's benefit's department at work, etc we finally got the issue resolved and Casey has nursing.

While we were working out the insurance issues we also got Casey onto all of the interest lists (Medicaid Waivers) that she qualifies for. Most of these are many years on a waiting list. At least she is on them now. There is one, MDCP, that she was able to get on pretty quickly due to severity. We will actually have her in that program starting 4/29/09. This will be great. MDCP will help cover additional nursing hours, they will help cover equipment, therapies, and a few other items that will really come in handy.

The last step of getting into MDCP requires a 24 hour stay in a nursing center. We scheduled that this morning. We will stay over the night of the 28th then when we check out Casey is in the program. Even though it is a nursing home, we are calling it a vacation. Tim and I will stay with Casey. It will sort of be like a hotel stay. We will still do all of Casey's care. Ever 2 hours a nurse comes in to see how we are, but other than that Tim and I are doing what we usually do.

Casey had her first water therapy (sort of) yesterday. She went to the therapy center and met her therapist. She was really good, she didn't complain at all and even bent a little in her legs and arms for Margaret (the PT). After they got to know each other we all went to check out the pool. Casey got to put her feet in. She loves the water. Next week is her birthday and we have lots going on so we will start the following week with weekly visits with Margaret. I can't wait to see Casey in the pool.

This morning I met with Casey's team in the school district as well as her current case manager/OT with Easter Seals. We had what is called an ARD meeting. It actually went really well. I was really stressing about it and very nervous/anxious about the outcome. I was very happy to hear that it will pretty much be continued as is. The therapists will change, but the frequency and types of therapies will remain the same. The goals and plans are similar. The new goals are written more directed at education where before it was more just about comfort. She turns three on Thursday and the new therapists pick up right away. We will work with them until school is out for summer. Casey will continue with Margaret during the summer but not with her home therapies. Then when school starts back up in August so will home therapy. She will keep going to see Margaret after school starts back too. The more PT for Casey the better.

We have family coming in for Casey's birthday next week. We have a few more details to finish up before then. This will be Tim's mom's first visit to the new house (yes, that is the correct punctuation- double possive). We are having a small party with Casey's family and caregivers here at the house. I'm sure she will have a good time. I will post lost of birthday pics.

We still have a couple of busy weeks ahead, but things are finally slowing down. I am looking forward to May when I think we can rest a little. I hope everyone is doing well.

Water Therapy

We finally have water therapy on our calendar! Next week Casey will go in to meet the therapist. We won't be in the pool yet. They want to start with meeting Casey and getting an assessment of what we can/should do. Hopefully the week after we will be able to start in the pool. I will get pics and post as soon as we know more. I am so excited we are finally getting started. I think Casey is going to love it.

G-Tube Pads

I mentioned a while back that Casey has been having some issues with granulation tissue around her G-Tube. This is common so I am not to worried about it. However she is refusing to stay off of it when she lays down so the tissue just can't seem to heal. When she lays on it and puts a sideways pressure around the seal it just makes such a mess. The moisture from the leakage is just making healing impossible. We use 2x2 little split gauze around the tube and hole to try and keep it dry but we can easily go through 5-10 of these in a day.

Recently I was online reading up on some sites dealing with moisture and granulation tissue to see if I could find any new ideas that may work. I came across a site similar to Casey's (a family member set one up to post updates on their special needs child). Jackson's site offers G-Tube pads. These are a great idea. His mother must have gone through 2x2's as quick as we do. She started making 3 layers of absorbent soft material that can be snapped around the G-Tube.

We ordered a set of the girl print pads for Casey. Overall I really do like these and would recommend them to other G-Tube parents. We used one right after we got them and it did a great job of absorbing the leakage. We left it on Casey for about 10-12 hours and it seemed great. When we put it on we noticed it was thicker than her usual 2x2's and so it did fit a bit more snug.

Casey's site is pretty raw and the extra pressure from the snug fit did cause her to bleed a lot. We should have taken some of the water out of her balloon before putting on the pad. We decided to let her site heal a little bit more then we will try the new pads again. I think as long as we let out a little bit of the balloon she should do great. When we first got them we showed her all of the prints. She really seemed excited about them. She loves to pick out her clothes and stuff so this was one more thing she could pick out.

Anyway, for any other G-Tube parent out there looking for alternatives to the 2x2's I do recommend Jackson's G-Tube Pads. Just be sure that you adjust your water level if it seems snug. I will put a link to the site on Casey's resources under friends too if anyone needs it later.

When it Rains...

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.

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.

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!

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.

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.

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.

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?!

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.