ChloeWatts.com

Wednesday, January 27, 2010

Dana had to do some business at the business office this morning so Chloe wasn’t as effective during PT/OT from what I heard. I’m sure she did okay but just didn’t push to her limits as when she has an audience and the comfort of Dana or me to be there as her safety net.

When I arrived at the room she was in bingo again. Today was special. It was the first day she only won two of the three games. Amazing! She ended up with two more beanie babies… not amazing. Pretty good ones though, a beaver and a dragon… I picked them out… (pat, pat, pat)

We had Eric drop by the room, per my request. Eric is the Nuero-Mon who monitored Chloe throughout the operation and was first to see the wave pattern change on Chloe, denoting something was amiss. Dr. D stopped immediately at that point. So we applaud Eric on a very important job, very well done.

After Eric was here we realized we had used time dedicated to PT… woops. Jewel was great about it though and came to the room. We all took a stroll around the unit. It’s the first time most of the unit had seen Chloe walk and it was like the Macy’s Day Parade! I was walking backwards in front of Chloe who was with her walker and Jewel for support, followed by the wheelchair walker and Mama. I was Chloe’s target. When she walked to me she was going to be able to kick me. I swore I would stand still… with a little moonwalking when she wasn’t looking. It was a LOT of fun for everyone. Sarah and Chris even showed up for the demonstration. Chloe made it all the way from the room to the nurses’ station, about 80 feet!!! Then she kicked me with her right foot and sat down.

Kate was next on the list for art therapy. Chloe loves this and is working on a cool box for Firebolt to hang out in when she finally gets to see him again. Unfortunately she needs the trach to be gone before that can happen. Just too many germs are possible with lizards.

Dana and I wheeled Chloe to the art studio and, as Dave was going to be there in 10 minutes, we left to do more business at the business office. We need to get the paperwork in for OHP by tomorrow and there were some paperwork questions we needed clarification on. We got back just as Katy was wheeling Chloe back to the room. Dave got hung up someplace but Chloe only needed a little suctioning it was handled.

Dana is getting some relief finally. She will do cave time until the birthday. If she doesn’t get some sleep soon she will cave in. Her desire is there but her abilities are being stretched past their limits. Between being sleep deprived, worrying about Chloe and a multitude of other things, and her tendonitis in a full flair-up, she’s been a mess. I hope this break will be very healing for her. Chloe and I will hold down the fort and do some heavy lifting and such. I just am not allowed to walk her to the bathroom and hold her on the toilet. I guess that’s a good thing for her. She’s had to give up way too much of her modesty.

Our day starts at 10 tomorrow so maybe she can sleep in. I’ll have a doctor or two to talk with in the morning but Chloe doesn’t need to be involved in that. We are trying to decide on placing a stomach tube in the near future. Dana and I would like to see the nose tube “life out” before putting Chloe through more surgery. Some of the decision will be based on if the speech therapy will go better with the nose tube gone or not.

The star of this story is sleeping soundly now. Talk to you tomorrow night. BTW I forgot my cell phone charger if you’re trying to call me…

Be well,
Ron

Tuesday, January 26, 2010

It’s starting to give me a complex… a good one… when I can say, another good night, after I’ve spent time on the windowsill. Chloe slept five hours straight before needing her first suctioning. Then it was minor suctioning on the quarter hour until about 7 pm. Each time she was back to sleep before I was back on the sill. The one cough assist with Sonya produced next to nothing. Everyone was pleased. By the way Sonya, we love you.

At 8:30 Chloe and Sarah went over more self-care. This is another activity that is gauged. How much assistance does she need for socks and shoes, etc. I can’t really tell you how she is doing on this part as I’m vanquished to the hall until the dressing is complete. Sort of like bathroom breaks, only different. In any case she isn’t too pleased about getting going at 8:30. She does a pretty good fake out when anyone tries to get her started that early. No different then when she is at home though.

Next up was a 10 AM PT/OT. Michelle has been our PT since the beginning of rehab and I’ll say that whomever teams up with her has a goal to achieve. I’m really impressed with Michelle. All her OTs seem to be on top of their game when with her. I don’t have enough blog time to name everyone, but you know who you are.

Chloe is on what’s called “the nose” during part of her gym time. It’s an artificial nose that goes over the trach so we can get rid of the tubes and free her up in the workout. Of course, now we are doing bolus feedings, three times a day, and they usually hit some of the rehab activities. Can’t be helped though.

Her walking is looking a tiny bit better every day. And today she worked with an 8-pound medicine ball that was the size of a duckpin bowling ball. It was a struggle for her but she plugged away as usual. She is using her right hand as much as she can.

Next, Jenny had her for speech. Chloe likes this, mainly because she gets to taste food and swish it around in her mouth, before spitting it out. She had some Oreo frosting but I think some of it may have diluted enough to be able to slip past the cuff. I suctioned a little bit of very white material soon after getting her back to the room.

Back in the room she wanted back in the bed before the next PT/OT visit. So we got her set and she asked for her computer. This is such a great outlet for her. It was the perfect Christmas gift.

Dana spent the night at home last night and arrived about noon in the room. As soon as she walked in I thought, oh no. She’s fried. I mean, really fried. She can’t sleep. She can’t eat. She doesn’t want anything to do with people. She is over the edge so I’m trying to make sure she considers more of her own healthcare. It’s bad enough that she has been at that hospital for seven weeks, but she is facing a long, expensive home care stay as well. I’m really not sure what to do about that yet. There are options but they are all expensive and complicated. Bottom line though is we have to find a way to relieve a lot of Dana’s stress. This is why you will find me doing all I can to protect her at every turn. It’s not personal against anyone, and I hope everyone knows that.

At 1:30 we were back down for PT/OT with Jewel… another gem… (Pun intended…) There is a type of stationary bike that they strap her feet to while she sits on a raised mat. This session was only 30 minutes so she walked to the chair and we went upstairs for school. Dana and I were scheduled for the conference during that time.

There was nothing very new during the conference. Everyone likes the progress Chloe is making and there is hope that she will be able to stay in rehab as is. We’re waiting on the government to make a decision….. oh nooooo.

After school Dana and I rejoined Chloe in the room. And then it happened…. Dana and I got called to the Principles’ Office….. Aaaarrrrggggg….. Not the whipping paddle! Patient relations was there to talk to us so we went to …. “The Room”…. Unfortunately it was the same room that we first heard the terrible news last year.

Okay… the dramatics here are a bit much I know. It seems there are some people who are scared to death they will be mentioned on the blog as having done something we didn’t like. Hummmmm…. Maybe they have a point? We have so much praise for so many people who have helped Chloe beat every odd that has been placed in front of her. Person after person has been applauded. There are cards called, Kite Awards, that the patients and families fill out for outstanding performance. Our names are on many of these. The people who have not received one yet have something to strive for. Others can just sit back and worry I guess. Maybe that means they don’t deserve one and should revisit their patient care procedures. Or in the case of one, practices that can appear less than honorable.

Now, I’m pretty good to people even when they don’t deserve goodness. The better helpers are not worried about this blog in the least. In fact, they look forward to being mentioned here. If I were in the position of being recognized in print, and I thought it had anything at all to do with my job, I’d probably be reevaluating my work ethics and step it up a bit. In the long run, everyone will prosper by this. But being recognized on this blog or not… really doesn’t have anything to do with anyone’s job. And we will always speak to anyone we feel is doing something we’d rather see done differently. I do hope that eases the minds of many.

After being released to return to our room, we set up skype so we could visit with my oldest daughter, Kelly and the kids in Wisconsin. It’s great to use this new communications tool. If you haven’t tried it I highly recommend doing so. Chloe and Dana haven’t met this side of my family yet so it’s great to be able to, at least, visit via TV, as the kids see it.

Margaret finished up our day with a visit with Chloe. They are working on many projects, including what to do about Chloe’s 11th birthday on Friday. It will probably be Friday before we get this resolved. It does look like there will be Birth-weekend-days parties though, as not everyone is available every day. Whatever works is good. I just hope Chloe can find some joy this weekend.

I left tonight to teach, so Dana crawled in bed with Chloe to watch Movie Night. The movie??? MJ’s “This Is It.” We had all sorts of people letting us know this was coming, with Chloe being his biggest fan. We brought Chloe to see it the last weekend before the hospital stay, I’m sure seeing it again will be a thrill.

Just received an update from the room. A new RT came in tonight and Chloe squirted him with the “fish.” So he brought her more and she proceeded to squirt Joanna, Josh, Lindsay and Mama. Then she ended up looking like she just had a bath. It’s tough having a water fight when you can’t run!

Bed dancing to “This Is It” was a blast and she was even revved up enough to do some more weight training. Bringing the two of them, Chloe and Dana, back together is great therapy, albeit a bit weird therapy.

Not a bad day I’d say. To tell you the truth here, as I always do, my LOCAL focus is on two people, Chloe and Dana. I’m not going to waste any time or energy on fixing anyone else in the hospital or local community. It would take way too much to do that. So I’ll leave that up to the individuals who feel a bit broken now. I’m sympathetic toward your situation but I am not powerful enough to change you. All I can do is bless you and give you my perspective that worry never solved anything.

Be well,
Ron

Monday, Jan 25, 2010

Last night saw many suctions and the cough assist machine was brought back to the room. That’s okay. I’d rather have it here and not need it than to have an “emergency” and need it quickly.

The day was uphill after the night, thankfully. Dana reports that the PT/OT was very good for her. They used the “swing” where she gets to use all sorts of balance. She would swing and pick up beanbags with a pole and then throw them into the basketball hoop. Quite a challenge I’m sure.

She was up and walking again today. It’s a slow shuffle with one wonkey leg and arm, but it’s walking nonetheless. She gets extremely focused during her walks. Last night Dana walked her to and from the bathroom This is a huge step forward.

On the way back upstairs Dana took her on a sightseeing trip. They visited many areas of the hospital, including the skybridge. From there they were able to see an orchid sale in the atrium. Of course they went. Chloe needs these excursions big time.

The afternoon was uneventful with just she and Dana in the room. Tonight we are looking for a restful night. She is pretty zonked so I expect peace.

Tomorrow it’s up and at ‘em as usual. We will also have our meeting at 2:30. Hopefully this won’t be the last meeting. It depends if we get moved back to acute care. She needs to stay in Rehab!!! Let’s all vision that.

Be well,
Ron

Sunday, January 24, 2010

Here’s a morning update because it’s so good. Chloe went to sleep at 11 PM. Overnight I suctioned her twice around 2 AM. She didn’t wake up. About 6:30 she needed some more suction and barely woke up. Aside from one bathroom break she’s been asleep all night and it’s 10 AM now. Still no signs of rousing her.

Dr. Shih had made the decision to keep her off the vent all night and see how it went. Score another one for Doctor Funny. I’m thinking we sell the ventilator on Ebay!

Everyone have a great day. We are planning on it here!

Ron

Saturday, January 23, 2010

It was an early start to the day for Dana and Chloe but it was an uphill day all in all. She woke with lots of suction needed and machines going off, etc. By the time PT/OT started she was already wiped out. However, in typical Chloe fashion she worked through it all.

Dr. Shih and Dana decided to try and have Chloe stay off the vent all night tonight. Last night every time she moved it would pop the vent off and wake everyone up. So, being as her stats are great all day we are giving the night a try. Joseph, the RT I couldn’t name on yesterday’s blog, spent a lot of time with us today. He trouble shot the mist machine and discussed all sorts of pertinent things. It’s good to have an RT that really appreciates his job, understands the patients and doesn’t spend 20 minutes defending his actions. Way to go Joseph.

Dr. Cuyler has ordered the trachs that will be so much easier on Chloe during future trach changes. These are a little more pliable and may not last quite as long but the procedure will be much slicker as there isn’t a flange to hang up on the stoma. It’s always easier to put a round peg in a round hole. The square ones are nuts!

I made it to the hospital at 4:15 today, after my FPU class and Dana was still here. I was surprised as I expected to see Kevin. Dana was in rehab when Kevin called so I guess he figured she was busy and didn’t come by. All’s good. Kevin and Laura are so extra helpful, it means loads to us. Laura will take a shift tomorrow so I can go to my next FPU class and Dana can get some more things done. Sunday is a perfect day for us to be away, as there aren’t any scheduled activities. We work her in the room only.

Patty has been very helpful lately in finding possible avenues to pursue in order to have Chloe kept in rehab past the 30th. Emmanuel is a non-profit hospital and there are a lot of grants given out to un and under insured patients. I have 9 pages to read in the morning to see where to go from here. If we don’t have a good response from the insurance company before the Tuesday meeting I’ll be bringing up quite a few items for discussion. It’s a no-brainer to keep Chloe in the program that is doing the most good for her. She is progressing so well. To take her off what’s working now would only mean the insurance company would end up paying much more for her long term care.

This evening Chloe and I spent quite a while with the small yellow ball and then the beach ball. It’s so much fun seeing her catch, hit or kick the ball. Her concentration is perfect… even when she’s watching Grey’s Anatomy while playing. After that it was bathroom break. With the help of our C N A Chloe walked to and from the toilet. With just the leg wraps she seemed to walk much better than with her tennis shoe on. If you really know Chloe you know she is a barefootin’ girl. So it wasn’t a surprise to me.

We also watched Ice Age, The Dawn of the Dinosaurs. I hadn’t seen it yet. It’s a lot of fun if you haven’t had the privilege yet. Tomorrow maybe we’ll watch Football! Chloe would probably bonk me…

It’s 11:22 PM and she is sleeping well. Let’s hope it lasts all night.

Be well,
Ron

Friday, Jan 22, 2010

Wow, what a day! I arrived at 8 AM as we were scheduled for an 8:30 trach change. Dr. Cuyler was on board to do the change and we were to have versaid on board to manage the pain and take the memory away. RT was also supposed to be standing by but I guess they didn’t receive their invitation.

When I walked in the room everyone had just risen … and from what they looked like … maybe it was from the dead. Dana told me it was nonstop action from 4 AM on, with suctioning, bells and whistles and anything else that could rouse them. Dana left to take care of herself for a few minutes and Chloe pointed to where Dana sleeps and put her hand over her eyes. I said, “Mama’s Done?” She nodded, yes.

By the time Dr. Indy… I mean… Dr. Cuyler showed up everyone was more awake to handle the procedure. The versaid was administered and Dr. C got ready. Dana called for suction to be on hand as I was reaching for the 10 French suction. I called for lubricant as Dr. C got the new trach out of the package and the nurse had it in her hand.

Versaid works fast so it was time to go. The pad for the trach came off first, followed by the trach ties. Then it was time to remove and replace. The trach has a cuff, a plastic ball that is inflated in the windpipe to keep Chloe from aspirating. That is sucked down for the two-way procedure. However, there is still a flange that makes changing one of these more difficult than just a smooth one.

With an extra tug on the old trach it was out. Chloe was starting to panic, the versaid wasn’t working as well as it could, and I watched as the stoma closed. Dr. C was on it like a bee on honey. He opened the hole with the very end of the trach and then, with a Big Push the new one was in place. He’s the master and it took the master to keep this change from being a repeat of the last one. The good part was that it looked like the silver nitrate had done its job the day before as there was no granuloma visible.

Before the new ties went in place I was suctioning her. The blood was impressive but one drop of blood can turn a gallon of water red. So the looks were worse than the amounts. However, it freaked Chloe out, even though we assured her this was normal at her stage of trach use. We cleaned her up and gave more pain meds. She was at a 10 pain level by now.

Dr. C did say this is a hard one. Go figure… it’s Chloe. He said we wouldn’t do another for a month. That was good news for all of us. The longer in-between these changes the better for all of us.

Later I was online looking for a trach I had heard of that has a cuff and no flange. I found it and past the word I’d like more information about it and to know if we could get it. Dr. C left a message that they have ordered them in the past. I put a note on the board for them to order some for our future. They cost $179 online. Wonder what we are paying for them????

Because Chloe had been through so much we had Speech come to the room to do the sensory tests to try and wake up the mouth and throat? She has new sensations each day so we are all very encouraged. She also gets to taste food during these tests.

Next was her teacher. She also came to the room. Her lessons are going much better now. It was a rough start but I like what I’m seeing now. Hopefully the insurance company will let her stay in rehab so that we don’t have to start all over again with new staff and new procedures. It will be the first time ever if they give us an extension past the 30-day limit per year they allow for rehab. One more month would be perfect! Chloe is making great strides with the system in place. If the insurance pulls us from the program we will have to go back to acute care and do most of the PT/OT ourselves.

Although she didn’t really want to, I convinced Chloe she should get in the chair so we could go to the art studio with Katie. She likes that so it was one of those times that persuasiveness was a necessity. She had a good time and Katie actually kept her an extra 20 minutes.

Back in the room Chloe had to stay in her chair, as we were to leave again in 30 minutes to go to OT/PT. Due to a bathroom break we were a little late getting downstairs but there was still plenty of time. She got set up, Dana suctioned her, and the games began. She used the BattleBall with weight on it today. It’s like a two-ended paddle and she hits a tossed beach ball repeatedly. It’s a good workout for her. Then she did some weight training and fought through the fatigue. Finally it was to the walker. She would walk about 15 feet and then throw a small basketball into a small basketball net. Then she would walk again. She wore out after the third walk and we were out of time.

Back to the room we were officially done for the day. She had her workout for sure. The suctioning was still colorful but Dr. Shih dropped by to say that this was normal and we’d probably see it all day. By nightfall it was pretty much gone and with a new trach pad now in place things looked much better.

Chloe is still addicted to the Food Network and watches it nonstop while in the room. She is also still sending receipts to everyone she can. I do believe she won’t stop eating once this trach goes away and she regains the ability to swallow.

I left the hospital as they were settling in for the night. I’ll be back in the afternoon, as I’m teaching tomorrow around noon. I’m hoping Dana gets someone to spell her for a few hours tomorrow before I arrive. She’s trying to do some errands and we both forgot I was teaching today. Days just turn to mush at this stage of the game.

All in all today was productive. We have decided to give her the knockout drug before the next trach. That seemed to work best. We also had a great RT today who is very invested in his profession and shows it with his due diligence. His name disappeared from my gray matter for now but we’ll be recognizing him at a later time.

Be well,
Ron

Thursday, Jan 21, 2010

Today started at 3 am with suctioning and cough assist. And, at 7:30 pm we are still going at it, just finishing up 45 minutes of beach ball. That’s one activity she’d rather never quit. She hits it with both hands and both feet. Her accuracy is quite good with everything, the right leg being the least cooperative.

This morning was filled with suction and fatigue. All throughout PT/OT she fought through it but was very sleepy. PT finished with a 60-foot walk with the walker and only one break. This was really the highlight of the day. When I asked her a little while ago how she felt about her walking she gave me the flat hand wave, indicating “ah… whatever.” I told her how much she had improved and asked her if she believed she would eventually be 100%. There wasn’t a hesitation with the yes head nod. If you saw the determined look on her face there would be no hesitation with you either.

Dana was able to get away for the afternoon and evening, finally. She left about 1 pm even though we had not received the word about an upcoming trach change sometime today or tomorrow morning. Dr. Cuyler dropped by and told us it would be 8:30 am tomorrow. We are so relieved that the doctor will be doing the change this time. We need our confidence rebuilt after the last change.

We were in the middle of speech in the room when Uncle Kevin came in. I think he was pleasantly surprised with what goes on during that timeframe. Chloe was able to gag much better and she is feeling cold easier as well. After Speech we went to School where she did math. She really understood it well and was able to write some of the numbers on a separate paper, with her left hand.

Next it was off to Psych with Margaret. Kevin was with us the whole time and he even showed Chloe how to use Spirograph to make some designs. She worked with that with high intensity.

At about 5 pm she was wheeled off for a bath. When she comes back from a bath she looks like a mummy… the nurse said Little Mother Theresa. I joked “Not” and Chloe laughed.

While we were playing beachball, Chloe hit a hard, fast one off to the right… just as Nurse Pat entered the room. Chloe fell back in the bed and laughed just short of peeing her pants. She loves it when she does something that cracks herself up.

We are hoping for a great night tonight. She should be tired enough. Now it just depends on how bad her secretions are.

Be well,
Ron

Wednesday, Jan 20th, 2010

Suction was the word of the day. It seemed like we were suctioning all day long. The secretions were thinner but more often, so she was not all that comfortable.

She did well again at PT/OT considering all the breaks for suctioning we had. She really gets into the activities and tries very hard. The new brace that they have on her right ankle is supposed to help keep the knee from buckling but I’m questioning its effectiveness. She may even be fighting it more than the knee. We’ll see though. Give it a few more days and, with the weight training she is doing, maybe she won’t need it anymore.

Dana gave her a taste of orange this afternoon and I did see her tongue move a little better than the other day. She’s doing everything she can to develop the mouth and throat so she can eat! She’s even watching the cooking channel non-stop trying to activate something in her brain that will tell her tongue and swallowing mechanisms to WAKE UP! I bought the cake mix today for her birthday on the 29th. That is her personal goal I know. Again, we’ll see. She can, at the very least, taste it even if she can’t actually eat it.

The wound nurse, Ted, had to come back again today. There has been some granuloma on her trach site and silver nitrate is the only way to get rid of it. Even though we have heard this can be very painful, Chloe didn’t flinch during the procedure. Ted is also just great with her. He is a comic relief specialist who has a daughter of his own. So he tells her jokes and does card tricks for her before the procedure to lighten the load.

A personal thank you to whomever is making it possible for me to get my computer fixed. This will be a huge stress relief once I don’t have to take three hours to boot it up anymore.

Bingo afternoon produced three more prizes for Chloe. We are wondering where to put them all. The way they run Bingo, everybody ends up winning something. It’s a great plan on their part and Jessica does a wonderful job with her bubbly antics.

Chloe’s eye still looks terrible but we have been assured that it will get better, although it will take quite a few days. It got bad fast and it will take some time for the meds to help out.

Dana had lots of company tonight. When someone is there to watch Chloe then Dana can get out of the room to talk. It’s really nice when someone who can sit with Chloe drops by, so that Dana can get away and have some quiet time. She really misses that. She tends to be talking All Day Long and it’s very draining. So if you drop by, and know you can make sure Chloe gets what she needs, please feel free to just tell Dana to go find a quiet place for awhile.

We are looking forward to a very peaceful night tonight. It’s great when both of them get to sleep all night. It doesn’t happen very often. There is a new RT on tonight but Dana has already prepped him for Chloe’s needs and the procedures we will accept. There are just too many ideas on how to do that job. I googled the best and brightest websites for information last night. Based on the information I found I’d have to say there are a few of the RTs I’d put back into training.

For those of you who don’t get to read the blog nightly I’ll try and do a weekly recap during the weekend. It will depend on time however.

Be well,
Ron

Tuesday, Jan 19, 2010

This wasn’t one of the better days, however, we are well aware that there are pits and valley along this long road. This was not the deepest pit but it was uncomfortable for her most of the day. The granuloma that builds up by the body to fight against a foreign body, sometimes grabs at the plastic of the trach and causes sharp, shooting pains for Chloe. Today was one of those days. In order to get rid of the granuloma they use silver nitrate. This essentially burns the substance off the body and cleans it out. It, in itself, can be painful so the preparation for treating with SN is precise. Tomorrow is scheduled for the procedure, which only takes a minute but can hurt. We have the correct meds on board for her though so we are taking all steps to keep her comfortable.

When we went to PT/OT it was tough for her as she needed a lot of suctioning and also had the pains whenever she moved. Dr. Shih ordered up some oxicodone to help her get through her workout. It worked out.

Up in the room Sandy met us. She was staying with Chloe while we went to the meeting of the staff. We didn’t have much to say today but just caught up on the insurance proceedings and a review of Chloe’s progress. We will be pulling the nose tube back a bit so it will now empty into her stomach. This should help her feel as though there is actually something in her stomach rather than just nutrition going directly to her intestines.

In OT she drew a pretty cool picture that is supposed to look like a stained glass picture when she’s finished. Not so sure about that but it was a pretty cool design. Maybe the works for her next shirt, who knows…

Colin had to go have toe surgery today as he’s been fighting an infection for a couple years that I know of. And Ivey had to go to the vet yesterday for shots. She got a major reaction to flea bites and lost a lot of her hair. The rest of us better stay healthy as those around us are falling by the wayside. We are trying to figure out our break times. Sandy will be able to sleep in a few days as we have her on night shift relief at this point. I’m going to pull some more night shifts so Dana can get some relief. And Kevin and Laura are on standby for some dayshifts to keep us all sane. If nothing else it’s interesting.

Thanks to all of you who have been helping out with various things throughout this ordeal. It is not un-noticed and very much appreciated.

Be Well,
Ron

Monday, Jan 18. 2010

Dana reported that it was a great night with both she and Chloe sleeping past 8 am. It was a good thing because the day was going to prove to be long and hard work.

Chloe was in her wheelchair at 9:40 and she didn’t get back in her bed until 2:45. During that time she did a lot of PT/OT and speech. At the end of the afternoon PT/OT, Annette and Spencer stopped by to see Chloe. Although Chloe’s last feet of the day was to use her walker to go 10 feet to her wheelchair, she really didn’t want to show off for her two guests. It’s one thing to be learning how to walk again in front of Mama and me; It’s quite another thing to do so in front of people who she’d rather have remember her as she was Dec 1st.

She really did a lot of work today and, by the time Annette and Spenser left, she was pretty wiped out. It was even difficult for her to stay awake for the eye doctor who showed up today. Chloe has had an infection in her right eye for a week. The eye drops she has been getting may be working against the problem. So we are switching to an ointment that she will blink into her eye. Right now she has very fuzzy sight in her right eye.

So we have had a good day and it looks like we will have a good night. Vicki is our nurse and Craig is our RT… and Pat went home early. Things DO get better.

Tomorrow is our meeting with the head staff. We will have some things to address and hope to find out more about what the plan is for the future, post January.

Be well,
Ron