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.