ChloeWatts.com

Friday, April 29, 2010 Happy Birthday Regina!

It’s been long enough now between blogs. Dana has some great news to report so I’ll be using a lot of her own words.

“If anyone deserves kudos towards Chloe’s healing it is Steve and his student, Carrie, at Doernbecker. They are SO motivational. Chloe leaves literally ‘dancing’ in the car. We spent a lot of our time laughing. Chloe’s voice with the ‘muir’ valve was much stronger, better enunciated today. She isn’t thrilled but we heard the differences. He recorded it so she can hear the changes.” This is an appoint I really wish I didn’t have to miss!!!

The tag to this story is this: (Dana) “After 5 months, Chloe said, ‘Mama’, with the p.muir valve. They all thought it cute and gave a moment of silence when tears streamed down my face. Pretty good for one who isn’t able to cry much. (oh how I try to get SOME release…it just doesn’t let go)”

Fatigue is such a block to emotion. It’s hard to understand it unless you live it. Some think everything is just going great. Others just keep asking, with closed ears. There are so many that are empathetic, but, even they can’t fully appreciate what goes on in this house and these bodies and hearts. It’s something that, getting the right supplies, receiving a replacement machine or two, having a sunny day, getting the deck worked on, or most anything else just can’t fully fix. Dreams are always interesting when dealing with little or no sleep and then awake time gets blurry.

Back to the Speech therapy… Steve will speak with Dr Cuyler for info on having a smaller trach placed so Chloe can have more of a ‘voice’. The more air passing around the plastic trach the easier it will be for her to speak.

They tasted cheese pizza, the whole thing, an entire Hershey’s bar, 2 packs of gum, ‘cause they couldn’t decide on which one, so they got BOTH for her, mango and watermelon, circus cookies, and a large Dr Pepper in a bottle.

At one point Steve said, “I have no doubt that trach is coming out!” Later Chloe and Dana were teasing each other. Dana would point to the trach and say, “you’re goin’ DOWN!!!” Chloe would react as only she can.

The treatment at Dornbecker is creating new energy for sure. Not to put anything down about Emanuel but Chloe was so weak a lot of the time she was there. The facility at Dornbecker is so much newer and larger that it makes for a very good change.

There is another new school nurse started this week. We are ready for consistency here. This is a major stressor changing all the time. And then there is the supply company that just can’t seem to get it right. Things we needed last week are still not ordered. It will soon be time to change companies.

Kevin and Colin had a date last night for the Bamf film festival at the Bagdad Theater. Kevin thought Colin would be interested cause last year he and Laura saw some 11-13 yr old directors of some amazing films. Colin has shown such interest in the subject that we are doing all we can to encourage more. It’s the old adage: If you only harp on the grades that are not that good then you only achieve a mediocre result overall. Colin’s doing well though. He’s been through a ton himself and there have been speed bumps in school, however, he has shown good interest in bring things back up and is trying new tools to get there.

Yesterday he had a solo at a choir contest. Word has it that all the kids are talking about it… especially the girls. You go Guy!

Today was reported as being horrendous. The night went terribly, her feeds leaked shorting out her Itouch. Her pulse ox beeped forever and she instinctively kicked it off her toe. And, after spending much of yesterday with an upset stomach, she woke up weak and with a stomachache. She went to school but didn’t make it too long. She was home early. Dana had a feeling she should not go out to run errands, and she was right… again. I’d say she knows her daughter better than most parents know their kids.

Tomorrow… or tonight, we should all be at Celebration Church for the Dan Millman talk. We’ll see how Chloe is feeling but it would be nice to have her there. I’ll be playing with the Holy Molys and Colins YouTube will be shown. And everyone really wants to see Chloe, although she is a bit uneasy with that. We always have an escape route set up so if she gets too swamped we can bow out.

Thank you all again for the continued love and support. It’s wonderful having such a large village to help raise and heal this cool kid.

Be well,
Ron

Sunday, April 25, 2010

Sunday night and Chloe is finally finished with her daily tasting. She has been encouraged by her speech therapist, Steve, to try whatever she wants… she just can’t swallow it. So, she’ll stay at the table for hours if we let her. She uses her suction machine and a spit cup to get the food out of her mouth. However, even with this, it’s a joy to her to have food in her mouth. It is also helping to move her tongue. She actually had the tip out of her mouth last night. That’s key!

We were out back for a little while as I worked on the deck. There is a lot of rotten wood from all the years it’s been out back. As luck would have it we have a lot of wood from Dr. D’s old deck. There was still quite a bit of good wood when he replaced it. I’ve had it at my house for a couple years now. Finally it is finding a great home.

We are set up for some PT, OT and Speech appointments for next week. This seems to be just one more layer of angst although we know it’s so important for Chloe’s improvement. Chloe would just as soon stay on the couch watching the food network and playing her computer games. But that isn’t going to happen and she does understand. When we get to Dornbecher she likes her therapists but getting out the door is hard for her.

The nights are starting to get a little better. With Chloe at night, the rule is, less is much more. When the nurse comes in, if she’s asleep then she tends to have a good night. If they have to spend much time doing the prep work for the night, or if they talk to her more than 10 seconds, she gets all wound up and ends up having a bad night. So we are trying to pull in the reins from professionals who have a job to do even when we’d rather they just sit back and keep Chloe safe overnight. We’ll see how it goes.

We are looking forward to Thursday night when author Dan Millman visits our church as a fundraiser for the family. With Dana not working and not having a prospect of going back anytime soon, any help is a lot of help. I never would have imagined how much meals have helped. Now if we cold just stretch our days by 12 hours or so…

Chloe has had her cuff down for up to an hour with no problems. This means we are getting closer to getting rid of that thing. I’d like to say soon, but that would be a little optimistic.

It’s been pretty much the same ol’ story lately. She is getting more impatient but she also shows us some spunk with getting things done for herself. It’s good and bad to watch.

Stay tuned.

Ron

Monday, April 19, 2010

This is going to be short and sweet tonight as I have to get some sleep. Chloe has an 11 am appointment and I’m the DD.

Here is some updated information about tickets for the fundraiser on April 29th. Patrick Lamb, who knows us well, has offered to sell tickets through his TicketsOregon site. “Tickets are available at http://www.TicketsOregon.com”. This will get you tickets in advance. There is a greatly reduced service charge but that brings the ticket price up to what you would spend at the door. Dan Millman is reported to be an extremely interesting man to hear speak. He will have many, if not all, of his 15 books available that evening.

Dana and I are working on ways to make Chloe’s nights much easier on her. She is so ready to have her privacy back that she could scream. We wish we could hear that!

Tomorrow we will be at PT and Speech at Dornbecher’s Hospital. We really are impressed with the setup they have there. Hopefully we will be assigned a PT person that really hooks up well with Chloe. This isn’t her favorite thing to do. She’d just rather get up and walk then relearn the trick of one foot in front of the other.

I’ll write again soon. In the meantime, please remember how much your help and support means to us.

Be well,
Ron

Saturday, April 17, 2010

It’s 1:15 am and Chloe has been asleep since 11 pm. Last night Dana pulled the shift for one of our night nurses. The report I received was, “A great night.” Chloe slept all night long with no suctioning needed until morning, and then it was thin. Her pulse ox machine went off once for a short period of time and that was it. When she woke up in the morning she was refreshed and said she had slept well.

Knock wood, but tonight seems to be a repeat of last. The machine beeped for about 5 seconds and she has been sleeping well. Ivey just went in on the bed and Chloe only briefly rustled about. Of course, just as I’m typing this, the alarm went off. She had kicked the sensor off her toe.

So, all in all, this overnight gig doesn’t pay much but the rewards are well worth it. Nurse Ivey, on the other hand, is a pain, not liking the door being closed like it is. She may just get sent downstairs if she doesn’t behave.

Chloe is awake now. It’s 1:30 am. Ivey jumped on and off the bed one too many times. Chloe took the wake up as a chance to use her yankour to suction. Now all she wants to do is kick the sensor off her toe. She hates that thing but it’s the only monitor we have to make sure she isn’t in trouble. Hopefully the new tape I used will now make it harder for her to kick it off.

Yesterday was a good day for. Dana and I took her back to Emanuel to see Dr. Steve. He was impressed with what he saw and told her she looked great. She does. We just need things to wake up. We were there during the lunch hour so we didn’t run into very many of our past helpers, even when we took a little tour after the doctor visit.

We called the eyeglass shop before we left and the glasses weren’t in yet. However, just as I was about to leave the house they called to say the glasses came in. So, back in the car and a quick trip downtown was well worth the effort. She loves her glasses. They are called blue but switch between an aqua and a shade of green. They match her eyes perfectly and she CAN SEE! She’s excited, and, I think, can’t wait to show them off at school.

1:45 am, bathroom break, but she seems happy and ready to go back to sleep. Leaving her alone is the key to a good night. Figuring out that pulse ox machine is the key to leaving her alone. It would be great if the alarm came with a remote so it didn’t beep six times before you can reach it. Oh well. I must say though, being an overnight nurse wouldn’t be my first choice of jobs… unless it’s for Chloe of course.

I’ll try and give you an overview in the next blog. My book is calling to me so I guess I’ll go get through a few chapters, hoping Chloe sleeps and the alarm doesn’t go off again. Whenever I move up here I know Dana is awake downstairs. She sleeps with both ears open.

If you haven’t heard of the fundraiser for Chloe that Celebration Church is putting on then here’s a bit of a plug for you. It’s April 29th, from 7 pm to 9 pm. Cost is just $20.00 per person, but no-body will be turned away. Author Dan Millman, “The Way of a Peaceful Warrior,” will be speaking. He also had a movie made from the book, one of his 15 best sellers. 25030 SW Parkway Ave, Wilsonville, OR, is the address. It’s in the Stafford Woods Conference Center. There will be music before the event… I might even play… Dan will have his books there and will autograph them during the evening. Please help spread the word. We’d love to see the room filled to the 478 capacity. I’ll also have the Famous Chloe Watts Peace Sun Tee Shirts there. They are in white or Chestnut for adults and blue or white for kids. Special orders will be taken for other colors.

Tomorrow is supposed to be a sunny day. It’s our hope you all can get out and soak up some vitamin D. We plan to. I planted my garden today. Maybe I’ll bring the family over and show it off.

BTW, Colin, Kevin and Laura went up to Canada to surprise Sandy on her birthday. She WAS surprised! She told me a couple days ago that the birthday five years from now will be the big one. However, this one will probably stay with her for a while with that surprise. She’s been the one traveling down here for everyone lately. It’s good she received some payback.

Be well,
Ron

Thursday, April 15, 2010

April 16 EARLY MORNING~!! Happy Birthday my sister!! Without you, the world would not be as it is. Thank you for your absolute resolution to save a life. It did happen. You were an instrument and I, forever will thank you. I suspect you have done this before…………

Now….stop reading . For those of you who are faint of heart. Imagine wanting something which someone can give you, only they have their own agenda and you don’t belong inside of it. They can relieve Chloe of angst, of pain, of sleepless nights.

But they are inside themselves.

And there they shall remain.

Fast forward. Without that help, the mother lions wants to kill , wants to protect her young, wants to jump off the vista bridge………fantasy.

And she, the young says I will go there for one night to show them what we go through.

Sacrifice.

What would you do to save a life? To save your own? To breathe? What would you do in order to EAT?

For those of you with ears to hear, eyes to see and hearts to understand…..

What would you do to save a life???

Stop reading. If you are of the faint of heart.

The mother lion protecting her young.

Dana

Tuesday, April 13, 2010

Here’s a bit of exciting news. Someone from the Children’s Cancer Society called today to tell Dana that Chloe had been chosen to receive the “Hero’s Award.” She will also be part of “The Wall of Courage” that will travel to various locations. There are only 25 kids from Oregon chosen, based on recommendations from the nurses and caregivers around the state.

Chloe received MULTIPLE recommendations. When being interviewed, one nurse at Emmanuel Hospital looked at the list and stopped at Chloe’s name. “As long as Chloe is on the list that’s all I need to see.”

What else would you expect about a little Old person, one who, just before Thanksgiving said “I’m grateful for my surgery.” Maybe she didn’t know what she was in for but she knew she was grateful for all it would bring to her and those around her.

Here’s another piece of exciting news. Another fundraiser has popped up out of the blue. Celebration Church heard from author and filmmaker Dan Millman. He will be in town on April 29th and wants to do a fundraiser for Chloe at the church. There will be opening music and a book signing after the hour and a half talk. This should be a great event. He is well known for his fifteen best selling books and the movie, “The Way of the Peaceful Warrior.” More information will be coming out in a day or two. You can check out www.CelebrationChurch-Portland.com for more updates.

Dana pulled the overnight nurse shift last night so when I arrived to bring them to the speech appointment she was about on empty. We made it to the Starbucks kiosk just in time and she got her “free” coffee. Upstairs Chloe’s therapist lowered her trach cuff on a trial run. She sat for an hour with the cuff deflated without any major problems. This is a good start. Next came the voice check. There is a device that lets her breathe in through her trach and out through her mouth. So, let’s try saying ahhh. Well, it didn’t sound a lot like ahhh but it was a noise in any case. Then it was to try “Hi.” That was a little better. Keep in mind it is barely audible and very whispery but it did come out. The best was 1,2,3,4,5. We actually could make out 3,4,5… twice! Very exciting.

Dana has decided to take on two night shifts to help Chloe get some better rest. She is just fighting, so much, having others in the house that it is taking from her sleep time. It happened that the two nights that worked for Dana to take depleted Joanna’s shift by both nights. It’s always hard to try making decisions that won’t affect anyone, but it’s impossible and something that Dana really needs to not concern herself with.

Tomorrow we have a meeting at school. It’s a planning meeting of sorts. Probably will be talking about the remainder of the year. Chloe is really fighting to get the work caught up in time to graduate to middle school.

Thursday is a meeting with the nursing counselor. Not sure what all will go on at this meeting but I’m sure it will be interesting. There are so many differences in this case that everyone is trying to figure it out as they go.

Friday there is a meeting with Dr. Steve. It will be good to see him again after all this time and hear what he has to say about progress and plans.

We hope there are some times we will be able to get Chloe and Colin out of the house this weekend. It would be nice to do some normal things again. The ducks are looking hungry. By then, however, Dana might just be ready for some real sleep. BTW… please don’t call early anymore. She may be trying to sleep. Email is best.

Be well,
Ron

4/12/10 the night after 4/11/10…

Wow, I just realized the last blog was 9 days ago. Time flies when you’re having fun. And yes, we have had some fun among this nightmare. Last Wednesday night we were at our friend’s church for a promotion of a benefit for Chloe. It turned out that the whole service was about Chloe’s story. It included so many quotes from this blog it felt as though I wrote the service. Then there was the point in the service that Colin’s youtube was shown. It looked great on the big screen and garnished a huge applause along with a lot of choked up people. My friend Alan, was to perform at the end of the service. He came to me later and said he had reservations as to if he could even sing after all that. He did great though.

It was nice to reconnect with many friends from my LEC past. They’re sure were a lot of good people from that church that were displaced after the services stopped. Many found churches other than Celebration Church, where we are, and I just had no idea of their whereabouts.

Then on Saturday night we went to the benefit, featuring the movie “Dreamcatchers.” The producer, Mike Handcock, was on hand and we had some good conversation with this man from down under, New Zealand. Rev Barry Dennis was able to say a few words about Chloe from the stage and that produced some nice comments from Mike when he took the mic. Chloe stood and took acknowledgement. Colin’s youtube was again shown and he took his bows as well. Mike said maybe he’d have him do his next movie.

On Tuesday we brought Chloe to her first OT appointment at Dornbecher Hospital. That went well, however, the OT lady was quite pregnant and won’t be seeing Chloe after that day. This seems to be a theme in Chloe’s care. The facility is very well set up and there appears to be a game plan in place for making the best use of the time. After that appointment we went to the speech therapist. He was great and had an immediate positive impact on Chloe. He had her tasting “Pirate’s Booty” popcorn and cheesy snacks and she chewed away happily! Again, there seems to be a timeline in place for getting things done.

Wednesday we were off to see Dr. Christy Closson…. (Please forgive me for destroying your name….) She is a very nice lady from our church who is head of the eye clinic at the school for the blind. She agreed to see Chloe to figure out what was going on with her double vision. We had her and three other pre-doctors working on her for two hours! This was the most intensive examination I’ve ever witnessed. In the end they found a prescription that would correct all the issues.

On Friday we had a very long day. At 9:45 we were to meet with Dr. Cuyler for a trach change. When we arrived I was surprised to see Chloe’s dad there since he works a lot. At least he finally got to meet Dr. Cuyler. Dana did the change this time with the doctor standing by. Everything went very smooth and I took dibs on doing the next one since she and I will probably be doing that on our own after the next one. Next time Dr. C will be looking at the vocal cords again.

After the change we were off to the eyeglass appointment. Chloe had a ball trying on the various frames, from ‘very intellectual’ to ‘Old Lady Syndrome’ to ‘perfect kids selections.’ She chose a very nice blue frame that will give her a brand new look. I think she’ll be very happy with the outcome.

Nights have still been an issue. We have a night nurse most nights however this is very hard on Chloe. We don’t know what the solution is but Dana and Chloe came up with a plan that we may try out in the future. Apprehensively Dana made her pitch to me and I am open to it because is serves both Dana and Chloe very well. Dana, Sandy and I have been the only family to spend the night with Chloe since the operation so we get how hard it is on her to have anyone else there. Dana gets to make the final decision and, in the end, we will do what’s best for Chloe.

Being a writer and being someone who is very involved in Chloe and the family, it is difficult for me to write without sometimes wanting to write more. Unless you are deeply involved in a situation like we are in you have no appreciation of the difficulties faced regarding others. Trying not to drag them into this is like holding back a dam with one finger. There are times I write a blog and sit on it overnight in order to let cooler heads prevail. Last night was one of those times.

For all of you who understand, who see us at our worst times and still stand by us, who take pleasure from helping, who know the value of community and family, who let their EGOs be sidelined, who can swallow their pride and do the right thing, we say thank you from the bottom of our hearts.

Be well,
Ron

Friday, April 2, 2010

We’ve been busy and things have been as usual, so I’ve not updated the blog in a few days. This is the planned course of action as we move forward into complete health. However, Dana called me all excited and wanted me to know she called the MRI doctors. She didn’t want to go through the weekend without knowing the results. I don’t know why she didn’t just call me first since I could have saved her a lot of trouble getting through to someone… but she didn’t. So after getting the ‘wait on the phone’ angst she finally got to talk to someone who would actually tell her something.

The MRI showed no changes, other than the surgical healing everyone has expected. Maybe I didn’t sound too excited and I don’t think I was. Yes, I’m extremely happy but it’s not anything that I didn’t already know. It’s been sooo obvious to me that the “named” problem is well behind us and we are now working on the problems at hand, getting her tongue and vocal chords to work so she can eat again, and we can also have real conversations with her. The walking part is coming along as well and she show us all the time by jumping to her feet and standing there on her own and moving around the house with her walker without us following in hover mode.

Dana was also excited about the fact that Chloe’s tongue is now clearing the teeth by a little bit. It was a few nights ago that I first saw this. Now THAT’S exciting to me. My goal for her is a couple more weeks and she can stick her tongue out at me. I’m her punching bag for her PT/OT workouts and I’m more than willing to be her tongue target as well.

Last night we all went out, as a family, complements of Larry Sherman, to hear the wacked out play at W. Sylvan Middle School. Chloe really was depressed about going. Apparently there was a birthday party at school earlier and watching everyone else partake in the treats and all, was just too much for her. She hit the wall and was depressed the rest of the day. So when Dana insisted we go she really was reluctant. However, once we were there and she saw that she wasn’t the center of attention, things went much better. She started getting into the play and clapped with every ending of scene and song.

Of course, right before the opening curtain she required an extensive suctioning that seemed to go on forever. Then she made it through the first half uneventfully. There was a snack area that we were invited to in order to get our pizza and drinks. We took turns going and eating while the other was with Chloe. Just before the second half there was a little boy that came over to Chloe. He was probably 3 years old. He did the curious stare and finally asked “what’s that thing on her neck.” I tried to just do a mild answer but Chloe kept giving me the cut off sign. So… being it was April 1st… I just said, “she had her head cut off and we put it back on with some glue.” Chloe about wet herself and the little boy just looked wide-eyed and went back to his grandma.

Just as the lights went off Chloe needed some suction. It was probably payback for my statement to the poor little kid. Oh well, my bad…

We made it home with not further events and Dana and Chloe went downstairs to watch Gray’s Anatomy. Things look better on the TV that is downstairs now. Dana had saved for three years to buy something more appropriate for the downstairs family room and, with some help from Dave Ramsey, other sources, and a great deal from Randy Wenger on Beaverton Hillsdale Hwy, we were able to have it hooked up yesterday. So if you’re looking for a TV please check out the Vern Wenger TV store and tell Randy that Chloe sent you.

Colin continues to be a huge assistant when it comes to the need for suctioning. Dana can now go outside or take a bath or just be out of earshot from Chloe without worrying too much. Colin seems proud to be a part of this and Chloe is happy to have him as Doctor Suction when needed.

Wednesday we will be going to a service with Barb that will promote the fundraiser for Chloe on the 10th. It is a showing of the new movie “Dreamcatchers.” Trinity was going to show this movie anyway and decided it might just be a great event to help Chloe and the family out a bit. Dana is still out of work, and will be for some time, so her savings will only last so long. If anyone has any ideas for good home based jobs she might be able to take on please let us know. The contact page here is a great source for that type of thing.

Dana is bummed out tonight as Michael Buble and, also, “Two for Fighting,” I believe that’s the name of the band, are both in town tonight and she’s at home. She vowed that if MB ever came back to town she would be there. I didn’t get on it soon enough but I did try today to get her a comp ticket. The other band is a favorite of hers and they are also playing at the Crystal Ballroom, a place I’ve told her we would go someday. This would have been perfect. It looks like both events are now on the “next time bus.”

We have ordered some more Chloe Watts Peace Sun Tee Shirts for the fundraiser. We now have White, adult Chestnut and kids blue shirts. Special orders are accepted but we need a minimum order to get some of the colors.

Hope to see you next Saturday.

Be well,
Ron

Tuesday, March 30, 2010

It’s Tuesday night and we are finishing up the final feeds that Chloe can have before we go to the hospital in the morning. She is having an MRI and also having her stomach button put in. This will replace the tube that hangs out of her belly now and leaks all the time. The new button should be a lot less trouble although it has its own set of problems from what I hear.

If all goes as planned we should be home about noon. No plans to stay over night there or anything. We don’t want one more night at the hospital thank you very much. It will be in, get ‘er done, and get home, hopefully before Chloe fully wakes up.

Nurse E should be here in about 10 seconds and we will try and get Chloe bedded down for the night. She won’t have school tomorrow but she is still trying to get her homework done for the next day. Good girl. And Colin has been helping her with her homework as well. Very nice to see… and maybe it will rub off on him to do his homework earlier and with more zest. One can only hope of a 14 year old.

There is a fundraiser going on for Chloe on April 10th. It sounds like a great night. Here’s what our friend says about the event she has organized.

Please join me in making a positive difference in the life of Chloe Watts and her family by attending the upcoming “Dreamcatchers” Movie Premier.

“Dreamcatchers” brings out the real love that is surfacing in people from all over the world, and reveals the key to living a truly extraordinary life. How cool is this? You are the love! An exceptional opportunity to “walk our talk!”

The movie is scheduled to debut on Saturday, April 10th. Mike Handcock, Producer, will be with us for the viewing and there will be a reception following the movie screening.
Tickets: http://www.brownpapertickets.com/event/101267

We will also have Chloe’s tee shirts for sale at the event. We hope to see many of you there. Chloe is not open to very many public appearances.

The food help has been amazing. Thank you all for your constant love and support. With as much hands on care we give Chloe it is such a relief to not have to figure out, shop, and cook.

Be well,
Ron

Thursday, March 25, 2010

It’s been a few days since you last heard from me. My work life has changed a bit for the next couple months. The census hired me for the most boring job I have ever signed on for in my life! Oh well. At least I’ll be able to name my own schedule so that I can still be on the Chloe team.

She seems to be getting a cold. Her secretions have been very thick. This means that her trach plugs and she can’t breath. Scary until she can either clear it or we can get the suction catheter to punch a hole in it so we can grab it. There should never be a question that she needs 24/7 care with this type of thing in her present. Until the trach comes out this will be our world.

Yesterday Dana reported something kind of cool. Chloe was downstairs watching some school required videos. When she didn’t think she was being watch she decided it was time to stand up. So she did, and put her hands on her hips while watching the movie. She sat for a while and then repeated the process. She wants so much to be able to do what she could on December 1st. It’s just such hard work for her to get there.

Today Dana put her in the car for some errand running around. They can only get out when they are only going on roads that Dana can pull to the shoulder quickly. If Chloe needs suctioning it’s usually “right now!” Thus, when we need to go long distances it is a two adult job. Well, they went to the video store. Chloe went in and met the manager who had a similar situation himself once. He heard her story but today was the first time they met. Unfortunately Chloe still doesn’t want to be seen in her condition anyplace near her home. She is so against anyone seeing her walk like she does. Although she did take some steps yesterday.

This weekend we hope to get out some. Saturday is supposed to be sunny so I’m sure we will go someplace. Maybe we’ll go to the water and let her feed some ducks. The more normal things she does then the more normal she’ll likely feel.

We are scheduled to get the feeding button on the 31st. This will be a great change as even the new tube end we had placed last week is leaking if we don’t tape it. When that happens it’s a floodgate and everything needs to be changed. Not fun.

I hope to have a very happy blog report at the end of the weekend.

Be well,
Ron