Tuesday, September 28, 2010

Back to School...

Dear Son is doing much better. He was able to come off the oxygen this weekend and seems to be doing rather well. He is happy and is not coughing. Unfortunately, there are a few teachers and students out at school with cold/flu like symptoms. As a result, he will not be going to school tomorrow because I don't want to risk him getting sick again.
We have an appointment with the pulmonary doctor early next month. I spoke with our neurologists office today (he functions as Dear Son's primary) to get some direction and parameters with regards to school. On the one hand, I have no objection to keeping him home during the pneumonia season and I was concerned about sending him back to school with people being out. As you may recall, Ped Neuro Doc suggested keeping him home if people had any symptoms. I explained that our appointment with pulmonary was next month and asked if I should keep him out of school until then or how should I proceed. The Neuro Nurse suggested I send Dear Son for two half days a week (previously he was going three) to see how he handles it and do this until our pulmonary appointment next month. Dear Son's first day back to school will be Friday. I am a bit nervous about this-Dear Son is doing well but I don't want him to get sick again. I had instructions from the pulmonary attending to continue nebulizer treatments twice a day until his October appointment so that should help.
Regarding seizures, Ped Neuro Doc added a small amount of Valproic Acid back since his platelets came up. This worked beautifully for Dear Son since it stopped the writhing and constant tremors.
Also, while he is off of the oxygen for now, Ped Neuro Nurse suggested keeping some portable oxygen on hand as a life saving measure. I'll do that but at least the large oxygen concentrator and the large back up pump can be returned. I don't have room for all of that stuff.
On Saturday night, Dad took Dear Son for two nights. He wasn't comfortable taking him once he got out of the hospital so I kept him last weekend. On Sunday, I painted my kitchen. I washed the walls, sanded, spackled, washed and rinsed and painted two coats. I needed to get it done on Sunday since Dear Son wasn't home and because I had to work on Monday. It's a small kitchen so it took longer to move out the refrigerator and stove so I could paint behind them. I had to move them out one at a time since the kitchen was so small and then it seemed like forever waiting for the paint to dry so I could move them back. Some people suggested not painting behind the refrigerator and stove since I have to repaint it back when I move, but it would drive me nuts to pull out the refrigerator every month to sweep there and see that wall half painted. That's just not my style. It turned out nice. I have a few things to finish up and then I'll show some pictures. I am making a chalkboard out of a mirror that I had and I have a faucet to install. I haven't looked at any lighting yet or hardware. As for painting, I have two small areas to finish up but I needed Dad to remove the bifold door so I could paint the inside of the opening and then I needed to borrow a ladder to reach the area over the top of the cabinets. I live in an apartment so I was limited with what I could do so it's merely a small cosmetic update.

Wednesday, September 22, 2010

One Step Back...

Things seemed to be going better last night. He slept after coming home from the blood test and the terrible seizures he was having on Sunday and Monday night, seemed better. He was on 1/2 liter of oxygen yesterday and I removed it last night because Dear Son had pulled it off and didn't seem to want it anymore. His oxygen saturations were great yesterday and last night. They were fine this morning as well and I also checked them repeatedly throughout the day.
Late this afternoon, he started having some seizures during his nap. At one point, he yelled out pretty loud. I went in to check him and he was sound asleep. By around 7 p.m. or so they started to cluster and have been clustering for the last two hours. I repeatedly used the VNS and also sang to him; for some reason that seems to help relax him a bit even if only momentarily. I checked his oxygen and it had started to fall and was down to 88 so I added a liter of oxygen around 7 p.m. hoping to boost him up. Instead, it's been two hours and his oxygen hasn't improved so I increased it and will watch him. I am not sure why it's dropped since he seems o.k. other than all the seizures. I want his oxygen saturation to increase and stabalize before I reduce the oxygen. Sometimes he needs more oxygen at night but like I said previously, he had been doing fairly well. I am not sure if these seizures are causing some issues for him.
Hopefully, we'll hear back from the doctor tomorrow after he gets the lab work. If not, I'll have to touch base with him to see what else we can do. In the meantime, I gave one of his midnight seizure meds a bit early to see if I can stop these seizures before they get out of hand.

Tuesday, September 21, 2010

Whew-It's a lot of work!

Not sure what else I can say about the last few days other than whew! Dear Son seems to be recovering well. Of all of the pneumonias in the last few years, this one seems the most mild, at least in terms of his recovery. I think the oxygen is helping out a lot since he's not working so hard after being released from the hospital.


He still is having some issues with seizures. They removed one of the seizure meds since they thought it was causing his platelets to drop however he's having some issues. At times, he has some terrible writhing type movements-looks very much like Michael J. Fox at times moving all over. His head moves so much it's hard to keep the nasal cannula on. He had some horrible cluster type seizures Sunday evening and again on Monday evening but seems better tonight. I spoke with his neurologist yesterday and he had me add one pill of his other seizure medicine to help Dear Son out. Today, we took him over to another hospital for a blood test.


I've been pretty tired keeping up with this new schedule. I am doing nebulizer treatments and chest pt four times a day, along with leg and feet massages for edema and doing his hand splint therapy to keep his wrists in alignment. All of this on top of meds every six hours, plus feeding, diaper changes, positioning changes, general grooming and moving him back and forth from the living room to the bedroom have me bushed! I don't think I sat down for a few hours between all of this.

I also have medical paperwork to do. I completed the paperwork for a Guardianship for him the week prior to his hospitalization and once the doctor returns the form, I can go to the courthouse for a date. It is recommended that a parent seek a guardianship for a person once they turn 18 so they can continue to make medical and financial decisions for them. I think this past year or so has really taken it's toll on me a bit. The lack of sleep really makes it more challenging to do all of these tasks. I typically get two to four days a month of uninterrupted sleep when his Dad takes him for the night and I am always amazed at how much better I feel and how much more I can get done on a full nights sleep.


Dear Son looks good, other than when he's having seizures or moving with all of the writhing type movements. One thing that seems better than previous pneumonias is all of the secretions. He doesn't seem to have any really. The antibiotic seems to be working so I am thankful for that.

Update: I just received a call from Dear Son's personal nurse at school. She inquired about him and offered to do any necessary treatments he needed. I hadn't thought about that option actually but she volunteered to do nebulizer treatments, oxygen, etc. I took Dear Son off his oxygen last night since he had pulled it off and his oxygen saturation was fine. He was on 1/2 liter all day yesterday. I think having school do a chest pt and nebulizer treatment would be great. I also talked to them about doing his splint therapy (these are arm splints to keep his wrists in a neutral position); the optimum schedule is three times a day and I suggested having him wear his splints to and from school. Each way is a 30 minute trip and that way, I'd only have to do one more treatment at home, at least on school days. I'll talk to the doctor's office on Friday about him returning to school next week. If it's a go, I think it will be great to have some assistance. To help out, I'll probably create a checklist to make things easier.

Friday, September 17, 2010

Home

It's been a heck of a long week but things are now going much better. I think what made this incident more stressful on Monday was that it happened so fast-I basically got out of bed in the throws of an emergency. Second, due to his past respiratory history, I was a bit jumpy fearing the worst-that he'd get pneumonia and die.
Once Dear Son was admitted to Big Academic Medical Center, things went much better. It makes a huge difference when the ICU knows his history and knows exactly what to do. They had him on the right amount of oxygen and he started to look better. The Local Hospital wasn't giving him enough oxygen to help him recover. By the end of the day on Tuesday, he was much improved due to the oxygen support. He stayed at 4 liters for a while and then they were able to drop him a bit as the week progressed.
Overall, we had two main issues this week. The chest xray confirmed a right lung lower lobe pneumonia and also showed a fairly hazy left lung. The Pulmonary Attending, who had never seen Dear Son previously, wasn't quite sure what to make of the pneumonia however after learning his history, thinks Dear Son aspirated his secretions. As a result, they treated him with Clindamycin, a broad spectrum antibiotic, if I recall. They started it on Tuesday and on Wednesday, he seemed to be feeling much better and looked more like his old self. Fortunately, we were able to catch this pneumonia very early. Another day or so, it would be hard to tell what we might have seen.
The second issue we had this week was low platelets. Low platelets could be related to the infection or to medication. In Dear Son's case, he actually had low platelets back in May, when a blood test confirmed them prior to his Make a Wish trip. Dear Son had some bruising on his legs and then it was learned that his platelets were low. This time, the Neurology Attending thought Dear Son's Valproic Acid might be the cause so they discontinued it. The platelets went up the next day and then remained the same today. I must admit I was a little worried when the removed the Valproic Acid in terms of seizure control. They wanted to remove it but didn't increase any of the other medications nor did they change the VNS. Dear Son did have multiple small seizures, multiple times throughout the day however I was able to control most of them with the VNS and we didn't have to use any Ativan at the hospital. My concern however is that once Dear Son starts moving around, he'll have more. I planned on asking Ped Neuro Doc today however he just returned from vacation today and didn't stop by. I had hoped to have a back up plan so I wouldn't have to page anyone this weekend. At this point, we'll just wait and see and hope for the best.
The problem with low platelets is that it can cause bleeding. It was explained to me that when your platelets are less than 20, you can experience spontaneous bleeding. While Dear Son's platelets are still under 100, they felt it was safe. The other issue with low platelets had to do with the Valproic Acid. Typically, if the Valproic Acid levels reach a certain number, they'll see low platelets. In Dear Son's case, his seizure meds, including his Valproic Acid, were in the therapeutic range and should not have caused an issue with low platelets.
Dear Son remains on a small amount of oxygen, currently one liter. The Pulmonary Attending thought it would be better to send Dear Son home on some oxygen so he wouldn't have to stay at the hospital while he is weaned off. He should be off the oxygen in another few days or so. We left the hospital around 7:15 tonight and by the time we went to the pharmacy and got home, it was late. The homecare company came here around 11:30 p.m. to set up the oxygen. They delivered a portable tank at the hospital so we could get him home. The plan is to continue oxygen, along with chest PT four times a day, nebulizer four times a day and to continue the antibiotic as well. It has a ten day course and we just finished day 4. I can't say that I was thrilled to get oxygen at home however I am glad to have some support for him. I think at this point and time, it's good to have a back up plan and at least if I have some oxygen at home, he can take his time getting better.
Overall, it was a good hospitalization. Dear Son wasn't horribly sick like previous hospitalizations. In addition, the staff was wonderful at all levels, in the PICU and on the main floor. There seems to have been some nursing changes and I must say it was the highest level of service I think I've seen in years.
In addition, a few of the physicians commented on Dear Son and what a good job I've been doing. The Pulmonary Attending told me today that she was amazed at how good he looked. She said she couldn't believe he was 18 and didn't have any pressure sores at all (When patients get older and get larger, it is much harder physically for caregivers to move them around and reposition them since they weigh more.). She said that his skin was remarkable and that the only way he could look that good is if I reposition him all the time to prevent pressure sores, which I do. Dear Son has a tiny pressure sore on his right ear where his ear crimps when he lies on his side. I told her about that and she said she had looked at that earlier in the week and said it was nothing. Overall, it was nice to hear such glowing remarks.
In addition the Pediatric Neurology Fellow was talking to me about Dear Son. He said he was amazed that Dear Son didn't have any contractures. Contractures are very painful and can result from a lack of good care. He couldn't believe as large as Dear Son was and as old as he was that he didn't have any. He said he feels bad when he sees kids as young as four or five with them.
Dear Son really seemed happier this week after the oxygen and antibiotic kicked in. He looked at many of the doctors, tried to say hello to a few of them and smiled. I haven't seen him this happy in a while so the extra oxygen must really have helped him.
One thing that was kind of funny happened today. As I have mentioned before, I massage Dear Son's legs and feet with organic, virgin, coconut oil on a daily basis. It's a great massage oil and the massaging keeps the edema (swelling) down. The cardiologist had recommended I massage Dear Son's legs/feet twice a day to help with the swelling (The coconut oil was my idea.). Well, every day I rub his legs and feet and talk to him about how nice it must feel, yada, yada, yada. I would ask him if he likes it and he never responded too much. Well today, I decided to rub his free hand and fingers. He had an IV in the one hand and his free hand was bruised up and bloodied up from the repeated blood draws and I felt kind of bad for him. So I put some coconut oil on his hand and massaged it really good, like they do in the nail salons. He started smiling and laughing and really loved. Here I'd been giving this kid some half hour leg massages every day and he was thrilled with a two minute hand massage. Who knew!
Overall, it's great to be home. I'll have to get his schedule together tomorrow for all of his therapies. The list is getting pretty long lately but I'll do better once I have some sleep in my own bed tonight. The hospital sofa is pretty brutal on my back. I've had horrible pain all week that resolves itself as soon as I sleep on my own mattress.
Thank you for your interest, prayers and support for Dear Son. It is much appreciated.

Tuesday, September 14, 2010

Dear Son Medical Update: Making Progress

It was a very long day yesterday. The day started at around 4:15 a.m. with Dear Son choking and struggling to breathe. The hard part was that normally, if Dear Son has a problem, there is time to do some things to help him, like I did yesterday. Unfortunately, he went downhill so very fast, that I had to call 911 immediately. They took him to Local Hospital however he was a bit out of their league. He oxygen saturation was 85%. He was crying out and struggling to breathe. I asked about a nebulizer and after a while they started one and gave him a breathing treatment for an hour. I had tried to do that at home however he wasn't stable enough and I thought he was going to choke to death.



Once we arrived at the Local Hospital, things didn't improve much. The biggest issue was that Local Hospital doesn't see many of these kinds of patients so they are in over their heads. They didn't seem to know what to do. I had asked to transfer him to Big Academic Medical Center (BAMC) and gave them the numbers to his doctors. The ER Doc said they couldn't transfer him because they didn't have any rooms. One of the issues that also made it challenging was that normally when Dear Son has issues, I page Ped Neuro Doc (who functions as his primary) and he's able to get us a room. He was on vacation and wasn't available. He always takes such good care of Dear Son and I that I admit we are probably a bit spoiled. It was harder having to go through the "regular" channels to get things done. He has a great reputation of taking good care of all of his patients though.



I paged the Head of Pulmonary at BAMC, who is Dear Son's doctor. She was called in last fall to care for Dear Son and I've only seen her once or twice in clinic so I don't know her very well at all. I talked to her at 6:35 a.m. and she said that the ICU had rooms as of Sunday night and that it didn't matter if they had rooms or not, that he needed to be in the ICU at BAMC right away, given his history. If for some reason, they didn't have room after he arrived, they could always transfer him to the other Big Children's Hospital but that he didn't belong at Local Hospital. She was leaving on a road trip in an hour but she said she'd call the other Attending Pulmonary Doc and her Pulmonary Fellow to take care of Dear Son and get his admission started.


Unfortunately, nothing had happened so I made a million more phone calls until things go done. The Pulmonary Fellow had been dragging her feet and was waiting for all of the blood work to be completed at Local Hospital before she even CALLED the ICU! Had she made the phone call, they would have known Dear Son's history and admitted him! This fellow is new and didn't seem to know the procedures very well. Ugh! On a positive note though, I was able to talk to Ped Neuro Nurse at BAMC and she was able to help facilitate everything so that helped immensely. I was very appreciative of that.



In the meantime, the Local ER Doc refused to transfer Dear Son. Dear Son kept crying out and struggling to breathe. His oxygen saturation stayed around 86-88% for several hours and finally around 10 a.m. the transport unit arrived to take him to BAMC ICU, some six hours after our ordeal had begun.


As you know, I came home to grab a few things and then head to the ICU. Once I arrived, it was a little unnerving since it brought back all of the memories of last November when he was on a ventilator. When I walked into the hospital, it was as if all of the oxygen had been sucked out of the room. I took a deep breathe and went up to the ICU. Last November was probably the absolute worst hospitalization Dear Son ever had. Not only was he terribly sick, but it was just plain difficult. The hospital staff didn't know the policy for contact isolation for the swine flu so each person would tell me something different. Finally, I spoke with the Head of Infectious Disease there and he was able to clarify the policy for the staff. Dear Son's Ped Neuro Doc did a great job too going to bat for us. In addition, they also made a huge nursing error and forgot to remove some elastic stockings on Dear Son and it tore up the entire backs of his knees and he was left with huge open wounds on them that took months to heal. I contacted the higher ups and they addressed the issues. I vowed I would never go back again. The bottom line was that I didn't have very good memories. To make matters worse, just last week, I had ordered medical records of the hospitalization and they NEVER even mentioned or documented the error! I was furious!




So yesterday, when I arrived in the ICU, they had Dear Son in the EXACT SAME ROOM that we had last year! All of those horrible memories flooded back. The good news this time was that the staff couldn't have been nicer and Dear Son didn't have to be vented and they were able to care for him. I was thankful that they were able to get him in yesterday and there weren't any issues unlike the swine flu hysteria that engulfed the ICU last fall when we were there.



Once he arrived, they were able to stabalize him, put him on more oxygen and normalize his oxygen saturation. The ICU Attending was one of the physicians that took care of him last year and is one I liked. By late evening, they had run several blood tests and done a chest xray and found he had a right lung pneumonia. They assume he aspirated his secretions. Luckily, we caught it early and he was able to move to a regular floor and out of the ICU.



Dear Son has breathing issues last night but looks much improved today. He is on 4 liters of oxygen and breathing much better. They are giving him chest PT four times a day. In addition, his blood work didn't look very well. We had an issue earlier this year with his blood platelets being low due to one of his seizure medications. At that time, we had decreased the medication but ended up adding it back after a few weeks. Currently, they'll hold the med and then re-introduce it once the levels come back up.



In addition, they'll be performing a sleep study on him. As you are aware, Dear Son had seizure issues this summer (he has intractable seizures) and he had choking issues when his seizures weren't controlled. The Pulmonary Doc asked me about them and since he's had some issues, she decided she wanted more information and will be doing a sleep study.



We'll probably be there a few more days. Dear Son looks much better today. Not only is he breathing better but his eyes aren't rolling back in his head like they were yesterday. They need him to breathe on his own without oxygen before they'll let us come home. At that time, I'll need to do the chest PT twice a day for twenty minutes.



Dear Son is still sleeping a lot. I worked today so Dad took over early this morning until I get back this evening. I'll be there the rest of the week however it looks like Dear Son should be o.k. and that they caught the pneumonia early enough. I'll doubt I'll be able to post again until I come back home in a few days but it looks like we are out of the woods so to speak. Thank you for all of your wondeful comments and prayers for Dear Son.

Monday, September 13, 2010

Back in the ICU

I've been up since 4:30 a.m. I had to call 911 this morning because Dear Son was choking and couldn't breathe. I had tried suctioning him, turning him and starting a nebulizer but he oxygen was so low and his breathing was so labored I had to call 911 asap. We went to the Local Hospital ER and then are transferring now to the ICU at Big Academic Medical Center. I suspect we'll be there for a few days. His oxygen was low at 85% this morning. I'll write when I can and will try to update you tomorrow.

Friday, September 10, 2010

Fall Cleaning Schedule

Bonnie at the House of Grace blog will be hosting a cleaning party over the next few weeks. The idea is for bloggers to talk about their fall cleaning schedules and to post pictures of their cleaning.

As you have probably figured out by now, I enjoy homemaking. I think that is part of the reason why I enjoy being a Professional Organizer, it's because I can help other people make their home nice too. That being said, I've developed some cleaning tips over the years that make the job much easier.

  • Have a vision for your house- For me, I want to walk in every day to a clean, organized and beautiful home. That is peaceful to me.
  • Know what you don't want- I don't like things on flat surfaces. It drives me crazy to have something in the sink and then you can't turn on the water until you move that item. Or to have something on the kitchen table and then you have to move it to eat. Who wants to live like that?
  • Learn how to be a great housekeeper-Learn tips and tricks to clean more efficiently. I frequently read books and am always learning new ways to do things. Doing this, keeps me motivated. Also, recently I was talking to my friend's housekeeper and asked her about how they clean baseboards and she shared her tips with me. Don't be afraid to ask professionals or even friends whose homes you admire for tips.
  • Get a cleaning schedule-If you really want to get it done fast, you have to have a schedule. Think of it like MapQuest, where they give you two options-do you want the shortest time or the shortest distance (sometimes that takes you longer). For housekeeping, you want the shortest amount of time and having a schedule allows you to be more efficient, thus saving you the maximum amount of time. In my book, cleaning is a lot like exercising, I am always happier when I am done.
  • Get tools to make the job easier -For example, I love my Eureka Enviro Steam Mop-it does a great job, is non toxic and gets the floors really clean. No more scrub mop and bucket of water!
  • Get tools that inspire you-I have a pretty broom that's black and white. There are so many options today, it doesn't have to be boring.
  • Cut the clutter-Less really is more when it comes to cleaning. Pick a few things and get rid of the rest. As a general rule, I try to have no more than three/four things on a table. Makes it much easier to dust.
  • Get a maid-If you don't want to do it yourself, hire someone. You don't get extra points for doing it yourself.

Guest bedroom in my former home.

My cleaning schedule consists of three basic parts: daily maintenance, focus (light) cleaning and zone (deep) cleaning. I start each day with my "Daily Routine/Maintenance". This is the first sheet in my home planning notebook that lists the order of the day, everything from my morning, afternoon and evening routines, along with cleaning tasks as well as my "to do" items for the day. Included in my morning routine are basic maintenance tasks related to housekeeping. These include: unloading the dishwasher, emptying trash, doing a load of laundry, making the beds and touching up the bathroom. I keep these "Daily Routine" forms in my 'Home" (Home Organization Manual for Efficiency-This is my own Dream Organizers product.) planning notebook (kind of like a Franklin Planner) and start a new form each day. I have all of my routines listed out and follow the tasks in the same order each day. This notebook sits on my desk and my entire day flows from this book.

The second piece of my cleaning schedule is what I call, "Focus" or light cleaning. I do each room of my home on a particular day of the week. The plan is to "focus" on one room each day of the week, Monday through Friday, so that I don't have to clean on weekends. Light cleaning is just that, it's dusting and cleaning the floors. I created this schedule myself and keep a Focus Cleaning Schedule in my book and each week I start a new sheet and cross off items as they are done.

The last piece of my cleaning schedule is the "Zone" or deep cleaning. These are the deep cleaning tasks that most people consider "spring cleaning". Instead of spring cleaning, I do these tasks once a month or thereabout, to keep things dust free and clean. For Zone Cleaning, I use Fly Lady's Zone Cleaning system. I have tried many systems over the years, including Martha Stewart's but Fly Lady's Zone Cleaning System is the best (scroll to the bottom of the link to see the detailed Acrobat lists). I don't care for other parts of her system but in terms of the zone cleaning, it's great (my maintenance and focus schedules are my own). She divides the entire home into zones and then does one zone a week. At the beginning of the month, she'll list the schedule for each zone. She has a list you can download. I put my list in Excel and then customized it by adding/deleting items specific to my home. I keep Zone Cleaning tasks in my home notebook as well.

So let's see how this works. In my planning notebook, the first three sheets consist of my "Daily Routine", "Focus Cleaning Schedule" and then my "Zone Cleaning Schedule". I'll use my bathroom as an example.


Powder room in my former home. I had to laugh when I saw this picture-who uses bar soap or those room deodorizers anymore.

Daily Routine/Maintenace for the bathroom-Light touch up-Make sure the sink is cleaned, no spatters on the mirror, cat litter is swept up and the bathroom is presentable.

Focus Cleaning Schedule tasks occur on Tuesday of each week and include: Scrub shower/tub. Change cat litter. Polish mirror. Empty trash. Scrub floors/baseboard. Clean toilet.

Zone Cleaning Schedule occurs once a month and includes tasks such as: dusting the ceiling/walls, vacuum ceiling vents, dust/polish chandelier, cleaning six panel doors, cleaning the scale, washing the rug, etc. The beauty of the zone cleaning is that I have an entire week to do all of these tasks. A typical zone will have 20 or so tasks in it. I simply choose three to four of those tasks each day and do them. By the end of the week, it's done. If I don't get all of them done, it's o.k. because the zone will come up again in four weeks. For zone cleaning, I'll typically highlight the three or four tasks that I want to accomplish that day. I usually pick a few easy ones and then a harder task.

Overall, I probably spend around 30 minutes or so on the average day cleaning, sometimes more, sometimes a little less. This doesn't include cleaning up after meals, since that is a given. I also do all of this with grain of salt. If I've been up all night caring for Dear Son and haven't had much sleep, it's o.k. if something doesn't get done. As long as my house is picked up and orderly, it's o.k. if the ceiling doesn't get dusted that day. The bottom line is that it's about making a nice home for your family. And when your home is clean and organized, everything works better.

Sunday, September 05, 2010

Joy To The World: Keeping Your Spirits Up with a Progressive Disease

Dear Son at home.

Over the few weeks or so, I had been telling Dear Son stories about himself to keep his spirits up. Since his hospitalization last November, he has lost the ability to move his feet and legs and can no longer move his hands. I could no longer tell him that he would get stronger as I had always done, to reinforce the goals of physical therapy. I had to retrain myself a bit to not say those things since I know deep down that those skills are not coming back. At some point, in a progressive illness, the illness begins to win.



That being said, I wanted to make sure that Dear Son remained strong. I worried that losing all of your abilities to move might impact how he felt about himself. I was worried he might get depressed. I have always believed that one of the best things you can do for your children is to make them feel good about who they are and certainly, now that’s he’s battling a progressive disease, it’s a bit harder. I began telling him good things about himself and using examples from his childhood to reinforce the stories. Dear Son would lie in his bed and listen to me. I am always quite excited and animated when I talk to him, trying to get a smile from him. That’s not always easy when they are eighteen, lol. I would tell him how his smile lights up a room and that people always comment on how handsome he is; I tell him stories of how so and so said he was handsome, and that it wasn’t just his Mom saying what a handsome man he was.
Dear Son in his ball pit at home.

I’d talk about his good sense of humor and how when he was small, we’d get into the elevator at Big City Children’s Rehab Hopsital and Dear Son would start laughing; he loved elevators. The rest of the people in the elevator didn’t know it then, but soon everyone would be laughing. Dear Son would squeal when he got into the elevator and start laughing. He’d laugh so hard as the elevator went up that soon everyone in the elevator would start laughing. He had one of those laughs that made everyone laugh. I told him the story and then would comment that making everyone laugh was something that was good about him and that not everyone was like that. Or I’ll tell him stories about daycare. Dear Son would laugh every time the daycare own told a child they couldn’t do something. She’d say it in her thick accent and Dear Son would laugh because someone was getting in trouble, which he loved. The more she talked the harder he laughed which made it difficult to get the other kids to listen. Then she’d tell Dear Son to stop laughing which made him laugh harder. Soon she started laughing and soon everyone was laughing at the daycare. That’s the kind of kid he was.



Dear Son at school, preparing to make dog treats.

As his deterioration has progressed, I began to worry about Dear Son and how that must feel when your body doesn’t work like it used to. As a result, I’d focus on his personality or his smile. I told him that when he smiles, he lights up a room and that other people always notice his smile. I’d tell him that not everyone is like that and that is something special that is unique to him. He’d listen to me and I could tell he was thinking about it. I’d remind him that I always ask to see his face when I talk to him so I can see his smile, because it’s beautiful. Sometimes he has Mickey Mouse in front of his face when he’s lying down and I can’t see his face. (Since he can’t speak, I need to see his face to see if something is wrong.) What I wanted to do was to keep Dear Son’s spirits up and help him feel good about himself.


Summer School Parent Open House



So it was interesting when I received a call this week from the school nurse. Unlike the last ten years when my contact was the head nurse over all of the special education students, we now have a new set of people now that he is out of high school and at the Transition Center. She called to introduce herself and talk about Dear Son. She had called to ask if I could send the suction machine to school since Dear Son’s drooling was an issue. She said if they could suction it out of his mouth instead of constantly wiping his mouth, it would be less disruptive to Dear Son when he’s doing an activity. During the conversation however, she went on and on about what a wonderful kid Dear Son was. She talked about how excited he got when he saw his teacher on Tuesday. She said he nearly jumped out of his chair he was so excited. Then she talked about how much he is enjoying school with the other kids. She said they have some higher functioning kids (usually this means kids who can walk and talk) that go out on trips and Dear Son gets to go with these kids because he “gets it”. She said Dear Son is one of those kids who knows what’s going on but is trapped in this body that doesn’t work. She talked about what a beautiful child he was, how handsome he was, how beautiful his eyes were and about his smile. She said his personality was something else. She couldn’t stop talking about him. She must have talked about him some thirty minutes, most of it gushing about Dear Son as she had never met him prior to this year. She said he’s like a celebrity because everywhere he goes someone sees him and says hello to him. But the best compliment was when she said, he “loves life”. She said that he “loves life and wants to soak in everything it has to offer”. She talked about his gorgeous smile and how it just lights up a room. I had to smile when I heard that since I had just told Dear Son that same thing earlier in the week. At the end of the call, I felt really good: good that Dear Son was going to school, good that he was happy and good that he was feeling good about himself. That is all you ever want for your children is for them to be happy. As I tell Dear Son all the time, when he smiles, I know he is happy and when he’s happy, it makes his Mama’s heart sing.
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