Rock, Rock and More Rock

The pool installation officially started on Monday of last week.  This part of Texas is known to have very rocky soils.  They got about a foot, maybe a little more, then hit rock.  For the past week it has been a lot of jack-hammering.  Casey is not a fan of the noise.  Her room is on the opposite side of the house so she has been spending a lot more time in her room than usual.  Luckily she likes her room.  What's not like, fairies, flowers, and pink everywhere.  For Christmas she got some new fairy decorations to add as well.  The picture is her "Dream Fairy" sending her pixie dust for good dreams. 

The pool project is expected to be about 6 weeks, so we are just getting started.  We are all very excited about the final product.  It is going to be so great to get Casey in the water and loosen up those still little joints. 

Her seizures are a lot better, maybe 1-2 times a week now versus the 4-6 times a week we had been dealing with.  Her doctors are working to get the bleeding under control and the seizures go along with that.  She has another respiratory bug now, and sadly I am not surprised.  With the bleeding we have not been able to do her aggressive respiratory treatments so she is more prone to pneumonia.  We are working with her doctors though and hope to have a better approach to keeping her healthy.   Her blood count is finally in a healthy range.  It took some time to get her out of the anemic range, but we were able to stop the iron last week.  

Casey had Botox injections last week to loosen up her armpits and hands.  Her teacher and school PT came today and both noticed improvements, so that is very good to hear.  Her poor little armpits are so raw from her being so stiff and rolled in.  I really hope that Botox and soaking in the pool (as soon as it's ready) will help improve her skin breakdown issues. 

I think that is about it for updates right now.  Tim set up a camera to capture photos of the pool each day.  When it's done he is going to make a cool time lapse to show the entire transition.   We are putting in a really small pool; I can only imagine the time and noise that would go with a big pool.  We hope everyone is doing well and enjoying the nice spring weather (if you have nice weather that is).

Hostage Situation

We have said it many times before, but for anyone new to the page, suction is something we rely on HEAVILY!!!  That being said, we have backups and backup backups, etc.  We have some that run on batteries to use when we are out of the house, or moving around the house, and then stationary units that run a little (very little) quieter to use while Casey sleeps.

Our preferred suction machine is called a Clario.  The company that sells these no longer sells them in the US.  A few years ago we had 1 that we loved and we decided to buy 2 more from Canada.  These are our main machines.  When one's battery dies we go to the next and plug in the now dead to charge.  This made it so there was 1 in use, 1 charging, and 1 ready to go (most of the time).  When Casey's little friend Guili passed away in July they had a new model of a machine offered here in the US that they gave us to try out.  We really hoped it would be as good or better than the Clario so we could move over to it.  It worked, better than the previous model by the same company, but it's suction was not as consistent as our Clario so it was our backup that we often kept in the car and had handy away from the house.  We also had an old model from that company that we had for emergencies, but really never use.  It is so LOUD and Casey gets really angry when we turn it on.  Then we have the stationary unit in her room.

A couple of weeks ago 2 out of the 3 Clario's broke.  Since they are not offered in the US, we had to ship them to Canada for repairs (ouch!).  We still had 1 Clario and  the one from Guili to use as well as our older portable backup so we didn't worry too much.  We were using the remaining Clario and when we went to use the backups neither was holding a charge.  They both still worked plugged in, but as soon as we removed the charger they failed.  This has happened before with this brand.  If you don't use the battery often they just stop charging.  We were a little freaked out having only 1 portable, but the other units were out for repairs and we hoped they would return quickly.  We kept the remaining unit charged as much as possible and carried plugs with us everywhere we went (we always have the plug- just in case).

Last weekend our only remaining portable stopped charging!!!  Oh my goodness, we have been on edge.  If the power went out our only option would be to take Casey to the car to power the unit until we could get to power.  We couldn't go to any appointments because we had no suction from the car to where ever we were headed.  We cancelled everything out of the house this week.

Of course, Casey is sick this week.  She has been trying to get over a cold and just kept getting worse.  I called her doctor to tell her and see if she wanted us to go in for xrays, or to see her when all of a sudden I realized- WE CAN'T LEAVE THE HOUSE!!!  We were hostages unable to leave a plug.

The company sent back the repaired units and we watched tracking more than TV over the past few days.  Yesterday it was out for delivery.  We waited eagerly all day for FedEx to knock on the door.  Just before 7 the status changed to "delivered- left at door".  Tim went outside and said no package, no truck.  He walked up and down to see if FedEx maybe left a box at a neighbors house- nope.  Of all the packages to get lost in shipping, not this one!!!!  I was freaking out and Tim called FedEx right away.  Luckily he was able to figure out what had happened.  The company billed our current address for the repairs, they had our current address as the return address, but for some reason they shipped the package to old house.  Tim threw on his shoes and rushed over.  The package was there and he was able to get it back home as I was getting Casey to bed.

Talk about a stressful week.  You would think with all of the backups we have in place we would be able to avoid this kind of drama.  We planned to take Casey to get an xray this morning and then possibly to see her doctor, but now that we CAN leave the house again, she seems to be feeling much better.  I can breathe again knowing that we CAN leave if we need/want to.  Today has been great having the portable units back in rotation.

Weather Bug

This weather has taken its toll on just about everyone.  It finally caught up to Casey last week.  She started with an ear infection and has been having lots of respiratory issues.  No fever, and the stuff she is clearing is out is thick and tons of it, but it's not the color we would see with a pneumonia or infection.  I think she has a nasty cold or flu (she did get her flu shot though- so hopefully it's a cold) and an ear infection.  She has needed a lot of oxygen over the past few days and tons of suctioning.  Last night was a little better than she has done in a while so I was hopeful, but today she is back to being miserable.

The good news is that her GI bleed does seem to be a lot better with the preventative medication as opposed to taking it re actively.  The bleeding being better has led to her seizures improving as well.  That's all very good news.  I hope to talk with her GI doctor this afternoon to get the official results of all of the tests he ordered and come up with a long term game plan.  We saw neuro last week.  She said that Casey's EEG did not show any obvious seizures, but that it does have a lot of noise (abnormal activity- all of her EEGs have had that- nothing new).  She thinks that the increased seizures with the bleeding and when Casey is sick could be either Local Seizures (also called focal or partial) or it could be a pain response and not actually a seizure at all.  Since Casey has little to no control over her body movements, she said that if Casey is not able to express pain in other ways we may be seeing them as what would appear to be a seizure.  Since they seem to be better controlled now we will just keep an eye on things and go from there.

We plan on just laying low the rest of this week while we let Casey get over whatever bug this is, and then we follow up with ENT next week to see how the ear looks.  I'll try to post more next week when we have all of the labs and doctor updates.  Until then we hope everyone is well and staying warm.