THE CHAIR

It's finally here. We have been waiting so long and Casey's chair finally came in today. It is such a great fit. There were a bunch of custom add on just for her. With all the customizations she can say she has a pimped out ride :) She fits perfectly in it, and it will grow with her for a while. She spent some time in it while all of the adjustments were being made. She was really comfortable. We will start getting her in it through out the day a little more to build up her core. I really think this chair is going to help keep her spine a little straighter and stronger. Not to mention, she looks so cute in it.

The chair has a reflective trim that shines in photos. I need to get the lighting right and post some better pictures. Here are some of her getting fitted. We will get some more over the next week or so as she gets more used to it.


Congratulations to Greg and Debbie. They welcomed a little boy, Noah Joseph to the family May 31st.

Updates

Casey has been doing really good. She and her new nurse have been getting to know each other. We all went swimming yesterday morning. Casey showed Laura how well she can float. After swimming Casey had 2 therapies scheduled and had to get a bath. With such a busy morning she crashed right as her second therapy was starting. We ended up having to reschedule. Once Casey decides to sleep you can't do much to keep her up. After Casey took a good nap she and her nurse played and read stories while I got some errands done. I have really been able to get a lot done with Laura here.

Later yesterday Casey started getting a little worked up. She was sounding wheezy and her heart rate was up. She didn't have a fever, just seemed to be uncomfortable. We have been doing a few extra breathing treatments (not the stinky ones that make her upset). She doesn't seem wheezy anymore. Now she is just really tired and has a runny nose. I think she may have worn herself down yesterday with all her excitement. Then with her system tire she may have caught a small cold. Tim and I both just got over colds so I guess we should not be surprised that she got it. Hopefully it is a quick one and she feels better in no time. She doesn't have anything on the schedule for today so we are just resting and taking it easy.

Some exciting news, Casey's chair will be here Thursday!!! We can not wait. I will take lots of pictures as soon as we get it all adjusted for her. Also, her stander is set to ship out Friday or Monday. We should get it next Wednesday or Thursday. We have been busy this week cleaning out closets and the therapy room to make room for all the new stuff. Gotta love Craig's List :)

Congratulations to Jason and Elizabeth. They had a little girl (Maya Swan) on Friday.

Date

It is really hard to believe, but we have been back in Texas for 6 months now. It seems like we just got here. So Casey and her nurse have been getting along really well. Tim and I decided to go on a date yesterday while she was here. It was the first time in over 6 months that Tim and I went out just the 2 of us. It was nice. We went to dinner and had a good time. Casey has been having trouble with her teeth hurting so she was up all day. She crashed right before we went to dinner and slept almost the entire time we were gone.

We have been moving (slowly) with the new Farrell bags. We started at 60cc an hour (her usual is 40-45). She did about 3 hours @60 with out any problems. The next day we tried her @70. She went another nearly 3 hours really well. The following day she was really junky so we decided to hold off. It is hard on her to be upright for so long, so when she is really junky we felt it was pushing too hard. Anyway, we started back up again yesterday and she did just over 1 hour @75. She wasn't spitting up, but she was not digging being in her chair yesterday. We are making progress. We did not expect it to happen over night. Hopefully by the end of the summer we will be close to our goals.

We did get exciting news. Casey's chair is finally on it's way. We expect to have it in the next week or 2. I can not wait! I really think she is going to like it. We also ordered her stander. The stander is expected to come next week. Lots of new stuff for Casey to start using. I will take and post lots of pics as we get the new equipment in.

Casey's Uncle Ken was in town this week for work. He came by to visit for a little while in between some of his meetings. Casey loves visitors.

I think that is about all for now. I hope everyone is well.

Farrell Update

After a few crazy weeks we are finally getting back to normal. Now that Casey is off all of her extra treatments and meds we can start to get back to our previous goals. We finally started to use the Farrell bags again today. Since we just started back up I can not give info on how she will do with it, but I can offer pictures and more details of how this works. I know when I was trying to research it finding good pics were hard to come by. Hopefully these can help clear up any questions for other parents looking into Farrell as an option for their refluxing child.

Okay, to start up the bag you can choose to connect it via gravity or pump feed. We are starting with the pump since that is our main feed source now. If she does well we will work our way up to gravity feeds. The Farrell bag has to be level with your feed source. In our case it is the pump bag. You can see in this picture that there is an empty bag (the Farrell bag) and our full pump bag.






The pump bag still run through the pump like normal. Instead of plugging directly into Casey's extension the pump line now plugs into a "Y" valve on the Farrell line. The Farrell line then plugs into the extension. Casey's extension is plugged into the Farrell line. It is just out of this shot. You can see in this picture the "Y" connection that the Farrell bag plugs the red connector from the pump. The other side of the "Y" goes up to the empty Farrell bag.

It is hard to see, but the Farrell line backs up the line to the point that would be even with Casey's belly button. The "Y" has to sit below her belly button. We put Casey in her feeder seat so there is plenty of room below to lay the line.





Casey doesn't like to sit up for long periods of time, so that is going to be our biggest challenge with this method. We need to get her upright more anyway, so I guess we are tackling two challenges at once with this. After she eats we have to leave her in the upright position for about an hour to let everything settle.


As we try it out over the next few days we will track her progress. Hopefully our next post will have good reviews of the system.








On a separate topic, Casey is really teething a lot again. You can see a bunch coming in on this picture.

Better Days

Casey had a fun weekend. Her cousin Riley, Aunt Molly, Cappy, John and great grandparents all came over on Saturday. This was her first chance to meet Riley. They have been living in Lubbock and not able to make the trip down to Austin until now. They are in the process of moving to Dallas so hopefully Casey can hang with her cousin more often now. They had a good time. Casey watched Riley play with all of his trains.

We took Casey to see her pulmonary doctor this afternoon. He did not see that she needs to continue the crazy stinky treatments anymore (thank goodness). We are going back to our twice a day routine. He also said that if Casey seems to be feeling better that that means more than an xray. He actually said it could take 10 or more weeks sometimes for xrays to show fully clear after getting sick even though the patients seem better in days or just a couple of weeks. That was a little reassuring. I think we have decided that we will use the pediatrician for vaccinations and simple stuff. Moving forward when Casey gets sick we will just get her in to see one of her specialist right away. They see more kids like her and are just in a better position to know what to do. Now that we have a nurse coming once a week we can have her help me take Casey to the specialist if we need to. We just think it will work out better in the long run if we start approaching sickness this way.

Casey officially started Vision Therapy today. She has met the teacher a few times and they have done a little bit hands on to get an idea of what to work on. Today was the first day that she came and spent a full 45-60 minutes just working with Casey. Casey had OT this morning too.

It was a super busy day. We had the extra treatments and CPT in the morning, got dressed, then we started her food and made a quick pot of coffee. By the time the coffee brewed we had to get Casey ready for OT. We got set up and OT went from 9:30-10:30. Then we had 30 minutes to change her diaper and read a story. 11:00 VT started and went until 12. We had just enough time to get Casey and her gear packed up and head out for her doctor appointment. We got there about 10-15 minutes early. We ended up having to wait a really long time. Casey did not have a nap at all. Toward the end of her appointment she crashed. The doctor had to flip her from side to side and she did not even notice. Of course as soon as we stepped outside to load up the car she woke up. We did not leave the doctors office until nearly 4:00. We got home just before 5:00. By the time I got Casey all settled in it was already time to start working on dinner. Poor Casey fought off sleep so hard. Around 8:30 tonight she was so fussy and tired we decided it was early to bed tonight. She is out and will probably sleep pretty good tonight. Luckily we don't have much tomorrow so we can rest and recover from our busy day.

We should try out the Farrell bags again this week. I will take some pictures and post progress. We hope everyone is well.

Good Stuff

We went back to Casey's pediatrician on Wednesday morning. We were so worried we were going to have to really fight to keep Casey home and out of the hospital. After we got there they checked her out and took some xrays. Shortly after the doctor came back in and told us that her left lung looks much better. She is not 100% just yet, but better. The bad news was that there appeared to be the start of something small on her right lung. Rather than risking the right lung getting bad they sent us home on antibiotics. We are continuing the aggressive breathing treatments with CPT for now as well. We go to see pulmonary on Monday and if all goes well with that appointment we can start to back off the aggressive treatments and get back to her normal 1 or 2 daily treatments.

Also good news, we have a nurse. I was so surprised at how quickly she was able to start. We met her on Tuesday and she is doing a full 12 hour shift with Casey today. Our nurse as well as a person from Maxim came out at 8 this morning. We had to do some paper work to get things started. We finished the paper work around 10 and our nurse (Laura) stayed while Kelly (from Maxim) went back. Casey had Play therapy today. She did really good. It was good for Laura to be able to see Casey doing some of her session exercises. After therapy Casey showed off a little. She did some tummy time and rolled on her ball. Casey likes to show off :)

We will spend the day showing Laura all of Casey's equipment, her sounds, what they mean, etc. Later today we will give Casey a bath too. I am really excited about having some help. We will do 1 12 hour day a week. I think I can get a lot done in 12 hours.

Lots going on

Lots of stuff going on since my last post. On Thursday we got our Farrell bags. We have been pretty excited to try these out. They are basically our next attempt towards getting Casey off continuous feeds and moving towards bolus feeds. We have been trying everything we have come across as far as feeding methods go. So far we have not found our magic beans. The Farrell bags are a way to advance the amount and instead of Casey refluxing the additional food she would hopefully digest most of it, and what she can not would go back out the pressure bags (Farrell bags).

Even after getting a Nissen Fundoplication when Case was 1 month old we have still been battling with reflux. We have had many Upper GIs done to be sure the fundo is in tact and in place. The fundo is, it was just never done tight enough. It is not worth putting her through another surgery to have it redone either. With all of her respiratory issues, surgery is a LAST resort for us. Hopefully we will make some good progress with the Farrell bags.

I was really hoping to take some pictures of the new bags, and Casey to post with details on how she is doing on the new method. However while we were trying it out on Thursday our camera died. We plugged it in to charge, but have not been able to try the bags again since. It has been a pretty busy past few days.

After trying the bags on Thursday Casey had a hard night. We decided to back off pushing the food and wait until Monday to really get started.

Casey had a follow up appointment Monday morning with her pediatrician. We expected a quick nothing to it visit. He just wanted to see how she had been doing since the second round of antibiotics. We told him that her saturation had been slowly improving, her secretions were starting to be a little less and the color had gone back to normal. We told him that she seemed to feeling better. She was awake more and wanted to play, no fevers, and just overall seemed to be getting better.

They wanted to do another xray to compare to her previous image to make sure the small blurb they saw in her left lung was gone or at least better. No problem. After the xray we waiting on the doctor and really thought we were done. Not this time. He said the xray looked worse. The blurb was a little bigger and that concerned him since she had already gone through 2 rounds of meds. He paged her pulmonary doctor and they started using the "H" word (hospital). We hate to hear the "H" word.

We were sent home (finally) with a new medication to add to her breathing treatments. This medication should help thin out and bring up any remaining fluid in her lungs or airway. In addition to the new medicine we were also told to increase the number of breathing treatments we give her from 2 to 4-6. Lastly we were told to do aggressive CPT (chest percussions) every 2 hours. Then Wednesday morning we have to take Casey back to the pediatrician again for yet another set of images. Hopefully this will go better tomorrow. Monday afternoon we have to take Casey to see her pulmonary doctor as well.

We started her new medication yesterday afternoon. We were about half way through the first treatment when we had to stop because she coughed up some really thick stuff. Since then she has been doing pretty good at getting stuff up. I really hope that the images look better. I know she feels better. I just hope we don't have to have a big fight with the doctor to convince him that she is okay and does not need to go to the hospital.

On another note, we have been interviewing nurses again. We interviewed for a respite nurse a little while back. We ended up putting that off and instead we have been working on getting a day nurse. I really think it will make all of our lives much easier. We interviewed 2 this week. The first one wanted to be full time and the second was looking for just 1 day a week. Being that we have nothing now, we decided it would be easier for all of us to go to 1 day a week. If later we think we need more we can redo things, but I think 1 day a week will be a good starting place. We really liked both of the nurses that came out. Hopefully everything will move quickly now and she can start right away.

After we get the all clear on Casey's lungs we should be able to try the Farrell bags again. We will post lung updates with Farrell pics as well as news about a nurse later. Hopefully we will not be posting anything about having to go to the hospital, or fighting to keep her out.