Thursday, August 29, 2013

Our New Home


We have moved!!!  Monday after work Tim and I started loading the truck (& worked through the night).  Tuesday we had some scheduling issues with nursing so Casey ended up going to closing with us.  As soon as we got the keys we headed to new place to start unloading.  Luckily we had a nurse by that time to stay with Casey.  My sister and a friend came to help- thank goodness.  We did 2 truck loads and a few van loads Tuesday.  We were able to get most of the house moved.  Casey seems to like it.  Her fairy room is not quite ready, but we're getting there.  We'll post some pics as soon as its ready.  We love the new house and the neighborhood.  I think we're going to be really happy here.  We'll send an email out in the next few days to close friends and family with our new address.  

We hope everyone is doing well.  For all those getting back to school we hope you have a fantastic school year :)

Friday, August 16, 2013

What Was I Thinking?

Every 6 months Casey has to see ALL of her doctors.  She sees some every 2, 3 or even 1 month, but without fail at that 6 month point she is due to see them all.  I somehow managed to schedule ALL of her 6 month appointments starting last week going through the 1st week in September.  I had them scheduled 6 months ago- before we started to plan a move or knew we would be short handed with nursing.  Part of me thought maybe I should reschedule until we get resettled, but I knew she needed to check in with everyone so we kept them all on the calendar. 

It has been CRAZY busy around here.  We only have day nurses 2 full days and 1 short day a week right now with 5 nights covered.  Trying to schedule everything for Casey in those 2.5 days as well as get the grocery shopping done, clean the house, sleep, etc. has been a challenge.  I am planning a really long nap (like an entire day in bed) as soon as we are settled in the new place. 

Last week Casey had her follow up with GI and Rehab.  These were both expected to be brief appointments, neither were.  They were both good, but lots of stuff came out of both. 

The good news is that Casey finally gained some weight.  She is up to 31.5lbs now.  I was so happy to see that number.  Casey has been having some retching issues that I was really concerned about.  Being that she is feeding into her intestines instead of her tummy, I don't understand why she would be retching so much.  GI wasn't really sure why either.  He did give us a medication to help reduce it.  So far I think it is helping some.  The side effects are drying her out and/or making her tired.  We are not seeing either of those occur, so I may ask to go up a little to see if we can get the retching totally stopped.  The small dose we started on has made some improvements.  While we were there I did mention that we are still battling the endless bile leak.  We have been able to make her skin look better, but the leak is still pretty bad.  He did not have much to offer for that (as expected).  However, later that evening he called and wanted to see if we would be willing to try a smaller size tube- YES!!!!  We took Casey in this morning to get the new tube put in.  I was a little worried it would be too tight, but it seems to fit well.  We will try it over the next few days and see how it goes.  I am very hopeful that we will have a big difference in leakage.

Rehab was a little worried about Casey's thumbs getting more retracted and when I complained about some odor issues with her armpits she said that Casey's shoulders were rolled in a way that did not allow much air through.  She suggested we do Botox to get both of these areas open more.  We have tried Botox in her thumbs, and this is actually the only place we have ever seen it work so I was all in favor of doing her thumbs again.  We have never tried her shoulders before, so I guess we will see.  Her arms, legs and salivary glands never showed any improvement with Botox.  She is really contracted in her arms and legs though, and her salivary glands are a bit of a mystery to begin with.  The doctor seemed to think there is a good chance we will see some benefit from the shoulders.  It would be great if it can help with her BO issues.  She also set us up to get new thumb splints made.  Casey had some hard shell hand splints that we never use since they are hard on her skin and some neoprene splints that don't do much.  She wants us to get neoprene style with a reinforced thumb.  We have an appointment next week to get the splints made.  We went back in to see her this morning after getting the new feeding tube and had the Botox injections done.  Hopefully we will see the Botox kick in over the weekend.  As of right now, I have a very tired and worn out little girl asleep on the couch.  She had a hard morning.

We see ENT and Pulmonary next week and then Ortho the week after.  These are all standard follow ups too. 

We had a new night nurse come by last night to meet us.  She will start next week.  It usually takes 2-3 shifts before I am able to sleep while they are here (and for us to know if they are a good fit).  I hope that it works out- I need to sleep! 

We talked with Casey's new school district yesterday.  We are going to give home bound school another try.  I have heard good things about the new district.  We should have a meeting to set up the schedule and services right after we move in, and then start services right away.  We will be doing OT, PT, Speech and Vision as well as education. 

Casey starts dance again right after we move too.  The new house is really close to the dance studio.  Casey will be so excited to be back with her dancing friends. 

Well, that's about it for now.  Back to packing! 

Thursday, August 08, 2013

We're Moving!!!!

As many of you may know, we have been trying to find a single story home for Casey for a while now.  The bigger she gets the more space she needs and we are running out of room on our first floor here.  Well, I am very excited to announce that we have found a place and we are moving later this month. 

Our house sold officially yesterday.  We are leasing it back through August.  We found a few single story homes we like in the Round Rock/Pflugerville area.  After a lot of work, and careful consideration we have picked the one that works best for us.  We will wait until we close on it to share the address (I don't want to jinx anything).   I can tell you all that it is in South West Round Rock. 

Casey was not happy about us showing our current house.  We had a stager come in that had us put a bunch of things away.  Casey yelled at her when she suggested we move or pack any of Casey's things.  Then when people would come to see the house we would hang out in her room out of the way.  With all of her medical equipment we could not just up and leave for showings.  She did not like strangers coming into her house.  That part is all over now, thank goodness.  Early on she was really anxious about everything.  We tried to make her excited about the move.  We told her she could redecorate her room however she wanted.  She loves to shop and it did help distract her some.  She has picked fairies for her new room.  I really expected her to go with ponies, but she wants a fairy bedroom.  It should arrive later this week, but she doesn't get to see it until we move.  She is going to have a really hard time in the last few days when everything has to be packed up.  We will use the fairy room as motivation to try and keep her from totally freaking out.  She got so worked up early on that we saw an increase in seizures.  I think they were stressed induced.

We have a lot of work to do in the next few weeks, but we are really excited.  A single story home is going to be so much easier for all of us.  Since we are changing school districts now, I think we will try home-bound school one more time (fingers crossed). 

We'll post pictures and more details soon. 

Monday, August 05, 2013

You Have to be Kidding Me!!!

Not even an hour after I posted how we finally have a nurse that we like picking up 2 days a week, I get a call from our agency saying that she can only do 1 day, and it is much shorter than we had planned.  Ugh!!!  I guess 1 short day is better then none, but so frustrating.

Updates

We had a follow up with Casey's dentist last week.  Casey has been teething (really since she was about 9 months old).  She has lost 10 teeth now and has 15.  Her molars are all coming in, and they look so painful.  Some are coming in her tongue bed, some on the outside of her gums and some where they should be.  Since she doesn't suck/swallow at all and her mouth stays open she is not giving her gums/teeth the feedback they need to know where they should grow.  The dentist is not worried about them (yet) but does want to keep an eye on them to make sure as they come in they don't get into areas that will lead to trouble.
The neurologist was happy with how Casey is doing during our recent follow up.  She still has some seizures, but now that she is able to get the medicine (it just oozed out with her old gtube) her seizures are much better controlled.  We started a new medication at night that is actually a blood pressure medicine, but it helps to keep her heart rate down some and it loosens her up a tiny bit.  We just give it to her at bedtime to help her get a good night's sleep.

We have still been having a hard time getting our nursing shifts filled.  We finally had a nurse start last week that we are excited about.  We have a nurse that as been with us for a while doing 2 days and this new nurse is also going to do 2 days.  We just have 1 day shift not getting filled right now.  The last week of August there is a nurse that we have been with for a while that thinks she can pick up our remaining day.  One of our night nurses has been out for a few weeks with her own family issues.  She works 2 nights a week and we hope she will be back tonight.  It is exhausting doing the night shifts and still trying to get anything done during the day. 

We are still trying to get Casey to take as much volume as she can and trying to get her to gain some weight.  The jtube site has it's good days and bad days.  On a good day it leaks, but not puddles.  We may change the dressing every 3-4 hours on a good day.  On a bad day she still pours out the site and we are changing it nonstop.  She is leaking bile instead of food.  With the gtube she leaked food that did not harm the skin around it.  The positioning of the gtube caused pain and a lot of issues, and when she would leak food she also lost a lot of her medicines.  Now the jube is keeping the food and medicine which is very good.  However, the bile that is leaking out is causing some skin issues around the site.  We use all types of dressings and creams to keep it off of her skin, but especially on bad days it can really look red and inflamed.  The positioning is better than the gtube, so we are still in a much better place than we were a few months ago.  We just have to do our best to stay on top of things and keep the area as dry and clean as possible.  It is a challenge when we go anywhere.  Getting her in just the right position, and keeping her there, as proven to be tough.  At least 50% of any outing includes a bright yellow, bile drenched shirt.  Things could be worse though- heck they were worse just months ago.  All in all we are figuring things out and doing the best we can.

We signed Casey up for dance again this year.  It starts next month and she can't wait.  We made sure she is in the same class as some of her friends too.  She has missed them over the summer break.  In addition to dance Casey has still been doing music therapy twice a month.  She does music therapy at home.  Right now she is still our little drop out.  We are thinking about (have not committed to the idea) of trying the home bound schooling option again in the future.  We have decided she will not "GO" to another school unless it is Rosedale.  As of right now we can not get a transfer to attend that campus.  If that ever changes she can go to school again.  Other campuses (in our opinion) are just not prepared for her.  We don't have the time or energy to be the guinea pigs either; not to mention the stress and risk that puts on Casey.

We have a few more standard follow up doctor appointments coming up in the next few weeks.  Other than these we are just focusing on the same old stuff.  We hope everyone is enjoying their summers.