ChloeWatts.com

Friday, Jan 8, 2010

It’s 2ish on Friday and I haven’t been to the hospital today. However, I did receive the news of the morning. Chloe had her swallowing test done at 9 AM. From what Dana said, she and Sandy had a hard time watching it as they kept expecting Chloe to start choking.

The two people in charge with the test did a fantastic job. Although the test wasn’t complete it did show enough promise that everyone was excited. There is a lot of activity in her throat. Things are starting to wake up. She still needs the tongue to cooperate a bit but she was able to swallow without aspiration. Keep in mind this is a minuscule amount of light pudding and some liquids. It was enough to test the mechanisms though and they seem to be doing what they need to do. We still need that left side vocal cord to come back online but she is working around it right now. Chloe wants more food though so I’m sure we will get there.

I’ll have more for you later.

There are many fine comments on my “crash blog” of last night. With the hits approaching 20,000, it’s obvious there is a lot of interest in keeping Chloe, AND the team safe. Thank you so much for all of this. It takes a village… It has also been a resource for the doctors and nurses to see what we are thinking and hoping for.

Organizers of help looking for ideas. I’m not sure about websites coordinating something like this as I prefer hands on, however, whatever works for the masses will be perfect. The food deliveries have been wonderful. It’s one less stress reliever for Dana and her team. Colin is also a huge concern for Dana. We keep checking in with him, but, being a 14 year old, it’s sometimes difficult to drag out of him what is truly his desire or need.

Ivey is another big concern for Dana. The poor dog thinks she has been abandoned. Not sure what to do about that but if you are one of many who is at Dana’s house for any reason, please take some time to play with Ivey. She does like her toys and loves to run in the backyard.

Sure, I’ll ask. My computer is trashed. I don’t know what it caught but if there’s an expert at cleaning out a virus or unwanted programs out there I would accept that help. It seems to be my lifeline lately. My laptop is still healthy at least, but I can’t even use my MSN right now and it takes an hour to reboot my desktop.

Thank you all for all you do and all you hold for us.

Ron

Thursday, Jan 7, 2010

Today I should be jumping up and down after the test for the vocal cords. However, for some reason or other, I don’t even have a desire to write this tonight. Chloe had her test done at 12:30 today and, after some trial, we were told the right side is working well. What that means is still a bit up in the air. Tomorrow morning there will be a swallow test done to see if she is able to start eating. They will give her a little pudding and fluid while monitoring her on an x-ray. We will also have an RT there in case she aspirates anything. Some is expected but none would be best.

So why am I not enthused about the blog tonight. I’m not exactly sure but the fluid is not their to drive the bus. With so much that goes on there on a daily basis it could very well be that I’m just fried. Or it could be just because everyone is at everyone else about everything. We just need some tremendous news and we need it soon.

Overall it was a good day today.

Be well,
Ron

Wednesday, 1/6/10

The day started too early again as far as everyone was concerned. About 5:30 am the fun on the machines started so Sandy was on her feet while Dana pretended to be getting some rest. Later, Dana and I were out trying applying to SSI for some extended insurance benefits when PT/OT showed up for Chloe. Sandy was the only one here to go to the gym. She didn’t recognize the ladies today but it turned out they really didn’t have a lot of information about Chloe’s capabilities. On the way down the wheelchair had some issues and Chloe wasn’t in it well. The headrest was coming undone so things were a challenge. Down in the gym Sandy had to be one of the helpers as there was only one person to work with her and that wasn’t going well. Chloe spent a lot of time lying down recovering so the morning was pretty much a waste. The wheelchair was sent out for repairs.

When Dana and I returned, poor Sandy was fried. I don’t care how well you think you sleep in the room it’s a joke. So when someone spends two nights in a row and then is called on to handle a good chunk of the day shift as well… it’s not a pretty sight. In fact, I never saw Sandy leave, as I was preoccupied with something going on.

Chloe had some art therapy with Katy and finished her “Inside outside mask.” It’s covered with words and sayings the represent how she wants people to see her and how she feels about herself. It’s quite interesting and she was very proud she finished it.

It was Bingo afternoon and, again, Chloe was a three-time winner. We’re running out of prizes that she is interested in. We may just have to put in some special requests.

I left for a couple hours to teach a lesson and I’m glad I did. My furnace has decided to take a break so being there to see that was a good thing. I had a chance to warm the house up a bit with a manual start. Now I’ll just hope it doesn’t freeze solid tonight as I’m on night shift with Dana.

We are all tucked in now. There have been early morning problems the last few days so we are hoping the new RT tonight has some of the problems addressed early. Chloe’s day starts at 9:30 tomorrow morning. That’s a break from the 8 am start. Hopefully there will be no early morning surprises and everyone can sleep in for a change.

Be well,
Ron

Tuesday, Jan 5, 2010

After the worst day that I’ve seen, Chloe and Dana were able to sleep pretty well until about 5:30 this morning. Sandy stood the ugly watch all night. Then things started happening. Chloe just couldn’t get comfortable with her breathing. It was suction after suction and, at one point, she was getting pretty distressed. The trach she has in now is a little bit smaller in diameter and she is producing quite a bit of gunk. The two things can work against each other.

She went through PT/OT and speech today and it was intense. She was pretty wiped out by the time she returned to the room. She wasn’t able to see her computer keyboard enough today to us it during speech. Her eyes have been jumping all day. Probably a bit of fatigue and maybe some due to yesterday. At noon I arrived to a roomful of sleeping people. I spent the next hour quietly preparing for the 1:30 weekly meeting.

At the meeting we discussed the previous day and how to prevent a repeat of the horror we faced. It was agreed that, at the very least, Dr. Cyler would be there to do the next trach. He may even take a look at the vocal cords at the same time. Also mentioned was… discharge plans. Dana froze. The first thing out of her mouth, as she started to really choke up, was “I can’t take care of her at home.” There is no way if we have to bring her home with a ventilator and all the other requirements of same, that we could take care of her and have any life at all. It just wouldn’t happen.

What do we do then? We focus on Chloe going home well and able to take care of herself. It’s what we all want so why not make it a reality. The other reality, however, is that insurance is running thin for rehab. We have until the end of the month with this insurance company. It will then be up to SSI if Dana qualifies and it can get pushed through in time.

We ran over to SSI today to see about signing her up to get state insurance. That would enable us to keep Chloe in rehab until she doesn’t need it anymore. So if anyone out there has contacts in high places in SSI we need this pushed through.

It was an interesting time at the SSI office waiting room. I had to step out to handle something with Dana’s unemployment on my cell phone. The guard came out into the alcove with me to receive a call. Just then I noticed a woman with four small kids go into the bathroom and the next thing I saw was Dana jumping up, banging on the door and yelling that she is beating her kids. She couldn’t get into the bathroom to stop it but she sure made enough noise that the door opened and she stopped the abuse. Dana just said “Please don’t beat him.” About that time the guard reached her and wanted to know what she had seen. He needed an eyewitness to do anything. Unfortunately Dana just heard the abuse. When the woman came out Dana, being the Dana she is, offered to play with her kids so they would be out of her hair until they left. She wasn’t taken up on the offer.

Dana later said she often wondered if she would be the one person to act in this type of situation. Would she be the one who played the fool amongst others in order to save a kid. She answered that today and very well. No one else got involved although the blows were very audible in the waiting room. Neither the guard nor I could hear them where we were but we sure heard Dana.

Later the guard advised us that he had flagged their account as possible child abuse and that someone would certainly look into it. It was some gratification after that ordeal. Dana’s on the edge so anyone stepping over a boundary or value better be ready to suffer the consequences.

Back at the hospital Chloe was able to enjoy Dawn and her guitar. Dawn sings her some great songs. Another visitor was Jake the golden retriever and Patty. This is a visit that ALWAYS lights her up.

One very good thing about the human body and mind is that it tends to protect us from very unpleasant events. Chloe can’t remember anything about the trauma of the afternoon yesterday. This is such a blessing.

An email came to me early this morning from Dana. It seems Colin is going into the solo singing circle. www.singingplace.com features Colin singing, “I’m Yours”. It’s a fun watch and a hard one to sing all by yourself. Kudos to Colin for putting himself out there like that.

The word came down from Dr. Shih this after noon that Chloe would be allowed to suck on a lollypop as long as she didn’t bite it. So, Dana and I stopped at Walgreens and found one of only two packs of Dumb Dumb’s pops, the ones she requested. They usually don’t carry these except at Halloween. So there’s another blockade that Chloe knocked down.

Everyone is winding down from the day now. Chloe has her Ipod, and the rest of us are on our laptops. The movie night was fun tonight with Dana and Chloe in bed together. Chloe had her sucker and Dana had her Hot Tamales. We took pictures and will try to get them on the blog soon.

The mind tends to fade after a huge lack of sleep so these blogs are getting a bit out of order and I’m sure I’m forgetting things. It’s a challenge that seems to be a low priority right now.

Thanks for all the comments on the blog and facebook. They are fun and uplifting.

Be well,
Ron

Monday, Jan 4, 2010

Dana says that she and Chloe had one of those ridiculous nights of two hours total sleep. Nothing exceptionally abnormal just an up and down night with a lot of fluid breaks. However, sleep would be good for everyone. We can’t quite figure out why we aren’t sleeping when we are at home. I think, probably, we can’t get our minds out of room 3502.

Even with the lack of sleep Chloe did very well during Speech, OT and PT therapy. A lot of the speech therapy will involve using her computer. They are trying to get the right hand involved. She has pretty good use of her left hand so she tends to not use her right hand much unless prompted to do so. We will also get text to speech set up on her computer. I just have to make a phone call to our community resident, Larry Lake, who has graciously offered to walk me through the process. It’s his specialty. It’s kind of amazing how many specialists of different fields we have in our corner. Sort of like it was planned out or something….

Chloe remains our chief specialist, as she knows exactly what she wants. She chose to stand today even though she was wiped out. She lets us know when she needs suctioning and what kind. If the tube isn’t right she lets us know. She knows when she is supposed to be on and off the vent and when the feeds are supposed to start. She nixed the electronic larynx as she knows she doesn’t want to use it and she probably also knows when she will be speaking again. She just hasn’t told us that part yet.

It’s now 12:40 PM and she’s trying to get a short nap in before her next PT/OT visit to the gym at 1 PM. Oh, she also had some time with the schoolteacher. So each day things are getting a little more intense.

Here’s something someone could deliver if you’re coming this way. We use a standard sized beach ball downstairs. However, we had it for the evening and it was a big hit. Not sure where there might be one this time of year but my guess would be the Dollar Tree. They seem to have everything out of season.

If you’d like to see something that is very interesting take a look at the map on the home page. Click on it and see how many different areas of this country and how many other countries are following Chloe. If you are one of our daily readers and you haven’t taken advantage of the comments section, please feel free to add your voice to help Chloe regain hers. We read the comments to her on a regular basis and she loves hearing your thoughts.

It’s now 5:35 PM and we have relearned the word HORRIBLE!!! Chloe needed her trach changed and also needed some scabby material cleaned away from her trach site. Silver Nitrate would be used for that and we were warned that it doesn’t feel good at all but “less than a bee sting.”

About an hour before the change was planned Chloe started getting sharp pains at the trach site. They were stabbing pains in the range of 10! Dana held her hand and was squeezed constantly. They gave Chloe Tylenol but it didn’t touch it. We repositioned her in a variety of ways and it didn’t help. Finally they came in with the Ativan which would put her in a semi out of it state. It works fast so the trach team had to be on the ready.

Dana and I had been trained on a trach baby earlier in the day and I thought they would ask us to do the change. Neither of us felt that comfortable with it so we suggested the RT do the actual procedure. It was a good thing. She asked if one of us would assist. I volunteered but Dave had just walked in so he said he’d like to help. He would just have to hold the trach in place while the ties were coming off. When the ties were removed the SN Nurse moved in for an initial cleansing of the area. It was pretty bloody and it was pretty hard on Chloe. Then the RT went to remove the trach and it didn’t want to come out. It was really painful for Chloe I’m sure. Dave backed out of the way. It finally let go and the SN Nurse did some more cleansing. It was pretty much a mess in there. Then the new trach wouldn’t go in and a smaller size was called for. When I saw there was no lubricant on the new one I spoke up. They lubed it as Chloe turned gray, her eyes rolled and she was out. Dana was a basket case at this point. The new trach went in and the airflow was reestablished. She woke up quickly after that and we calmed her down.

It was a traumatic experience for all of us in the room, the RT included. Dr. Shih showed up just in time and he has such a calming affect on a situation it was nice to have him there. Soon after that Sarah and Chris showed up. Although Chloe was mostly out of it they still created a positive atmosphere. She gave them a thumbs up for being there. All in all the teamwork was good throughout the procedure. We just didn’t like the fact that Chloe would have to go through something this bad.

Chloe was cleaned up and the trach site newly dressed. We are so glad it’s over with and plan on a different approach to trach care in the future. There Will be more dressing changes and better cleaning of the area from now on.

Dana finally left to get something to eat at 6 PM. She probably won’t eat much… although I hope she does. She is completely wiped out from this experience. I know that future trach changes will be easier on all of us but that doesn’t lessen what happened here tonight.

Dana and Sandy will be with her overnight. Dana should have a runner with Sandy here so maybe she’ll get some sleep. I’m watching Chloe and she’s dreaming. I think she must be reliving the entire episode. She hasn’t had a relaxed face on her since before the trauma.

We can just hope for a better day tomorrow. She has a full day and we will also have our Tuesday meeting to discuss what went on and what needs to go on.

Be well,
Ron

Sunday, Jan 3, 2010

It was Ivey Day!!! After lots of preparation by Dana, she was able to bring Ivey for a visit. She waited outside Chloe’s door because Dr. Shih was in the room and she didn’t want to overwhelm him. Then she decided to announce “Chloe’s anti-depressant is here” and she pranced in with Ivey. Dr. S didn’t know what to think until he saw Chloe LIGHT UP!! Then he said “all right!” So for 45 minutes Ivey visited Chloe and it was a great reunion. She didn’t see Chloe at first as she had to scope out the room, look out the window and visit everyone. Then Dana got her on the bed and Ivey behaved just as a good therapy dog should. When I arrived at the hospital after my Financial Peace University Preview, I asked Chloe if she liked the visit. There was not doubt! It was the bright spot in this entire stay.

Sandy brought Ivey home and she reported that Ivey seemed a lot calmer now that she has visited her family. She has been one stressed out dog and then add the flea attack she went through and she was in the Mess Category of the rest of the family.

After getting Ivey home and situated it was Colin’s turn to go out with Sandy. They dropped the bottle return and then off to Target so he could use his Target Gift Card.

Dana had quite the dream last night as she lay with Chloe in the bed. By the way, Chloe’s heart rate retreated to its lowest point, 108 while they lay together. So, back to the dream. Dana saw a yellow monarch butterfly come and land on Chloe’s trach. It slowly flexed its wings and breathed air into the trach. Then two blue butterflies and one red butterfly arrived. They arrived to wake up her vocal cords by the wing movements… which replicate the vocal cords. Like she said, it’s much more creative than her usual dreams.

During the early morning hours Dana and Chloe fell asleep together. A visitor showed up but didn’t wake them and the nurse followed suit. I guess the recognized a good thing was happening. The bond Chloe and Dana has is something to behold.

An addition to last night’s scene was the presence of leg wraps for Chloe. Her blood pressure has been an issue when we get her up or she exerts herself. These seem to have corrected that problem as we had her sitting up for over 5 minutes. She did very well although I thought her balance was a bit more wonkey than usual. She was turning her head around to give me the stinkeye when I would say something dumb.

Last night she gave Dana a scare when she reported chest pains. The nurse quickly deduced it was the angle Chloe was laying and that it was more of a heartburn feeling. They repositioned her and everything seemed to be alright.

We seem to have the respiratory questions answered. There were too many different answers from too many “experts” that we needed to nail someone down to an answer that made sense. When you go too deep with suction it can do damage.

Sandy has the day off after handling the ugly shift two nights in a row. That is enough to fry anyone. Especially when we know we have to be half awake to watch what is being done with Chloe overnight and to be her voice if something is going wrong. If I hadn’t been through the hospital stuff so many times and seen so many mistakes made during those times, I’d probably have a hard time understanding why 24/7 is so important when you have a loved one in the hospital. It’s bad enough when it’s an adult, but a voiceless child makes it a no brainer for me.

Chloe came up with a perfect Chloeism tonight. She emailed Grandma that, “I still have the throbbing urge to eat!” Can anyone out there imagine laying in bed for a month and not being able to eat anything, not being able to say anything, not being able to walk anyplace, nor being able to write??? I can’t.

We are looking forward to our Tuesday meeting. It’s close to the need for a new Trach We were expected to do the second one, however, we have not even had the trach baby here to practice on and we’re yet to meet our new RT trainer. I’m going to ask to have the doctor there again for trach #2. Tonight’s RT, Melissa, gets kudos from all of us.

It was nice seeing everyone at the potluck today. Sorry I’m not a good communicator verbally lately but this is my best source of information since my brain doesn’t need to respond too quickly.

Be Well,
Ron

One Month Post-Surgery 1/2/10

Day two of the New Year and … funny thing… we don’t feel any different… Go figure. Dana and I both slept at about an hour at a time. That’s about what we get when doing the overnight shift. Sandy is on nights right now and I know she isn’t doing any better.

By the way… Please forgive us if we don’t answer or acknowledge your comments on the blog. With all that is going on we hope our smiles will be felt through the airwaves. To answer all of them would take a full time secretary. We do appreciate all of you though.

Still on our string of pretty good sleep nights for Chloe. It’s especially necessary when she has PT/OT lined up for the next day. Being Saturday, the activities are a bit limited but they did add the EKG today. Dana was here when PT/OT arrived and, being she didn’t recognize them, she put up her defenses and held interview court. By the end of the session Dana was impressed with them. We have had issues with weekenders in the past so she was on guard.

Kevin was able to stop by today and bring some non-hospital food that Laura prepared. It all looks great but I ate before I got here. Dana and I almost passed in the hall as she needed to get home to Colin. She took some food and we talked on the way to her car. Poor Chloe gets really sad when Mama has to go for the night. She is sitting in bed with the snow globe that has Dana’s pictures inside. It’s not Mama but it’s something.

She and I played catch for a while and each day I see improvement. She has a beach ball in the room now and we’ll try that in a little while. She is best with that while seated but we don’t have the help for that tonight.

I’ve suctioned her twice since 6 PM and it looks like her “cold” is breaking up nicely. We are adding extra water to her feeds line and it appears it is helping many things. She has looked good tonight even though we had O2 saturation number problems. Nothing radical but definitely not where we wanted them. She turned down a cough assist, maybe because her trach site is so very sore today. We had a couple people be a bit rough with her so I’ve put the word out that we need to be very gentle, especially tonight.

Again, being the weekend, I decided to have Chloe push the call button and we were silent. They have a note out front to just send the nurse in when they don’t hear anything. We also asked them to just say, “I’ll send your nurse right in”, so Chloe knows someone is on the way. We may be on a one on one shift and away from her for a few minutes when she has to call. She doesn’t need to be panicked thinking they just ignored the button because no-one answered when asked, “can we help you.” The nurse said she’d make sure everyone knew to do this.I

She is melancholy and watching TV right now. She does like getting the emails from her friends and I told her not to feel obligated to respond. Everything takes energy from her. She is so ready to leave this place, so ready to get out of bed and walk around, so ready to get rid of the trach and start talking and eating. My hope is that all this energy is going to propel her into the direction that will make it medically feasible to do what she is ready to do.

Be well,
Ron

New Year’s Day 2010

New Year’s Day. Hope it feels like a Happy one to all of you. We’re doing our best to make it that way.

Dana says things were pretty good last night, although, as she quite accurately pointed out, the person who spends the night Never gets good sleep. Chloe can be sound asleep but we are so programmed to hear a small beeping machine or a different sound in her vent or the nurse coming in or the person next door having a bad night. But that’s what we’re here for. It’s to protect Chloe, not to get a great nights’ sleep.

This morning she was a wee bit puny and actually needed some bagging as her numbers crashed. We never like to see that but are glad we have the option to help her out. She also had some cough assists that produced some good results. For those who don’t know what a cough assist is, it’s a machine that puts air into the lungs and then, quickly, sucks it back out, thus simulating a cough. We then suction any gunk. Chloe has a good huff with her diaphragm but it’s not the same as a deep cough.

The latest concern is with her heart rate. It should hover around 80 but it’s been at 135+ for quite some time now. It could be directly related to the brain stem trauma but they are going to do an EKG to try and pinpoint it. That will happen tomorrow morning most likely, as her PT and OT will start around noon for a few hours.

There wasn’t a workout scheduled for today so Dana had her sit at the edge of the bed, looking out the window. She did well but didn’t last a long time. We’ll try and get her up again for a few minutes before I leave here. We did play catch again. She is getting so much better with that and it’s obvious her eyesight has also improved or she wouldn’t be catching the ball like she is.

She has been emailing but, to all her little friends, please don’t feel bad if you don’t get a message right away or if the message is short and sweet. She does the best she can but she isn’t fast and her endurance is less that you might realize. Be patient, she’ll get there.

I guess Aunt Sandy and Chloe will be watching Twilight tonight and may even have a little nail polish party. Chloe got some really cool green polish from Celeste the other day and she is anxious to get it on her fingers. The trouble with that is we have to take the polish off a finger or toe in order for one of the monitors to work right. So she may have only four toes painted at a time.

We started the year a little depressed. She doesn’t like Mama going home for the night, no matter who is lined up to take the shift. She may be almost 11 but that doesn’t mean the bond with Mama isn’t strong. She feels very safe with the Mama Lion in the room. Most of the time things go as planned, however, we have caught an error here or there that just don’t need to happen. It’s going to pop up but we’re experienced enough to run interference for her. We do have the nurses trained now to come if the button is pushed and no-one answers on the other end. No voice has to be a pain!

Be well,
Ron

New Year’s Eve 2009

HAPPY NEW YEAR!!! That’s our wish for all of us. And even though we didn’t catch the nurse before she gave Chloe benedryl a little early, we were able to keep Chloe awake to celebrate New Years Eve. So at midnight, Chloe, Dana, nurse Liz and I were able to toast the New Year with sparkling apple juice. Chloe can’t drink it but she did put her finger in the cup and then to her tongue… and she said she could taste it. That was a surprise as we were told there would be no way she’d be able to taste because of the trach. One more thing Chloe refuses to believe.

After another good night’s sleep, Chloe was put through her paces of PT/OT/ST. At 10:30 we had a good visit from PT and Speech. They each took a half hour and it went very well. Chloe is very quick. Then at 1pm we were on our way to the gym for more PT/OT.

I was out last night about 9 pm getting her some shoes for gym. At the last minute Dana called me to let me know Chloe didn’t like runners with the puffy sides. It was just in time so I found a pair of “skate” shoes that were pretty close to perfect for her. She gave me a thumbs up at least.

She is getting better every day at helping to sit up before transferring to the wheelchair. I thought she was going to do it on her own at the first visit of PT. The transfer to the chair is going much smoother as well. Then… the big news… we had Chloe standing, with help, for about 2 minutes the first time and a minute the second time. Both times she gave us clear signs that she needed to sit and lay back, but she made it nonetheless.

Back in the room she, Dana and I played catch with her baseball sized squeeze ball with the happy face. She is actually catching the ball with both hands together. Then her tosses are pretty accurate with the right hand. Sometimes it goes crazy but mostly she was close to target… my face.

She played a couple games of hangman with speech therapy today. It was interesting that she was asked to pick a name to put down and she chose COLIN as the word. She also chose that to write when asked to try right handed. Her writing is all over the place now but she couldn’t even hold the marker last week. I still attribute most of this fine motor movement accuracy to her working the Ipod touch. She has been emailing like crazy with it.

At one point today my oldest daughter, Kelly, called to ask if I had Skype on the computer. I didn’t yet but in five minutes I did and we had our first computer visit with Chloe’s almost step siblings. It was also the first time Dana was able to see everyone while speaking to them. This was a great time. Chloe loved the video visit with Kelly and Chris and her three s-brothers and one s-sister and their new puppy, Lily.

One of her best friends, Annale and her family walked in … actually was snuck in by Dana… at one point. They brought goodies and the cider we celebrated with. Chloe was ecstatic. The nurse walked in and I turned her around and told her she wasn’t supposed to be in here just now. She put her blinders on and retreated saying… make it quick. One more Rebel convert!

Being the holiday weekend we are seeing new faces and not many of them. It’s pretty much a ghost town on holidays and weekends. Kind of strange and a little bit good in a way.

Sandy and Colin joined us around dinnertime and stayed until about 10:30 pm. We celebrated NYE a bit early with cider from little medicine cups. They were on their way back home to avoid the midnight drunks. Not a bad plan. I’ll be dodging them in a little while.

Goodnight on this first day of a year that will be a Happy New Year!

Blessings,
Ron

Tuesday, December 30, 2009

Two nights in a row now Chloe has slept well. Dana and I could not have gone home if we planned it because of the snow conditions. So it was nice to have Chloe so well to do in her bed.

The 8 am activity was cancelled, for which we were eternally grateful. As it was, shortly after 8 all the entry help started their business. We can doze through them though as they try to keep it quiet.

Chloe was scheduled for Speech therapy at 10 am and Kim came in to work with her. We are trying to fit her new laptop up with “Text to Speech” capabilities. So far we are failing miserably but I’m sure we’ll get there eventually.

Next up was a visit to the “gym.” Three of us were able to get her in her wheelchair and wheel her down to the 2nd floor rehab gym. Chloe was a bit unsure in the beginning but woke up quickly. We played catch with a beach ball and she even got going with a few soccer moves. Quite impressed. Then we did some writing during a game. She is making progress through tiny baby steps.

Back in the room she was able to nap for about 45 minutes before Speech showed up again, this time with a larynx tool. She practiced short words and phrases. We will end up on a trial three-week period of one but it has to be secured by a credit card. Hope it stays around or we’ll be facing a $700 bill to replace it. After the three weeks we’ll probably just send it back since we fully plan on Chloe being able to speak on her own soon enough.

After Speech we were into Bingo where Chloe won on all three games again. Granted there is a good chance most of the kids will win but they all get a great kick out of getting bingo. Then Dana or I usually go retrieve a prize for her. Sarah helped by getting a snake for her after one win. No… a fuzzy green one that isn’t slimy.

OT made its last appearance shortly before Kevin came for a visit. Chloe played triomenos, which works her fine motor skills.

She is on 4-hour sprints off the ventilator. This will probably be increased soon as she is doing well breathing on her own.

Our planned schedule of who is where, when, was tested yesterday with the snow. So, Dana is there for the night and Sandy is with Colin and I’m with Kitty the cat. Guess we’re all settled.

Good night.

Ron