Pure Joy!

Dear Son went back to school today. He has not been to school in almost a month. As usual, when he is excited, he is wide awake most of the night. Last night was no different. He was making noise at 3 a.m. and I got up to make sure he was o.k. He was wide awake and all bright eyed. I told him it was too early to get up for school and kissed him and went back to bed. I started his gtube feeding at 3:55 a.m. and he was awake. He got on the school bus at 7:30 a.m. this morning and the bus driver was talking to me so he invited me to come on the school bus. When I came on the bus, they were tieing down his wheelchair. Dear Son was grinning ear to ear and the look on his face was pure joy! He was so happy to be going to school! It was just awesome to see him so excited. I haven't seen him this excited in weeks. Somehow, you just know it's going to be a great day.

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.

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.

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.

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.

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.

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.

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.

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.

Back to School!

It's been a fairly long summer here and I am actually somewhat relieved that Dear Son has started school. Now that's he's graduated, he's moved on to the Transition Center. This is a facility that is paid for by the school district where special needs students can attend until their 22nd birthday. After high school, they can exit the school system and move into a day program or choose to remain in the school system and attend their day program. The difference between the two is funding. You pay out of pocket for the day programs and transportation; most of the time Medicaid will help fund the day programs however regarding transportation, you are on your own. For that reason, I choose the Transition Center through school. The benefit for Dear Son is that he knows all of the kids and more often than not, they have many of the same people that assisted him in high school. The Transition Center focuses on life skills. There is still an IEP (Individual Education Plan) in place and he still receives physical, occupational and speech therapy.

As for Dear Son, we met with the neurologist last week. As you are aware, Dear Son has had a rough summer in terms of seizures. I had been in contact with the doctor on/off all summer and he's been tweaking his meds. About three weeks or so ago, he made a medicine change that seemed to help however Dear Son continued to have seizures every day. One of the issues that we have is that we are getting to a point with Dear Son where they are running out of options. The neurologist increased his vagus nerve stimulator (VNS) and the battery life is now less than four years; we just had the battery replaced last year. Dear Son is on a lot of meds and he's nearly maxed out on those medications. In addition, while there is a newer seizure medicine they could try, once they use it, they won't have any options left. The neurologist instead will review Dear Son's previous levels and increase one of the meds to see if that will help his seizures. He'll follow up with me this week regarding the change.

We also discussed school. Dad was quite insistent on Dear Son attending school full time, five days a week and I told him that will probably never happen again. Dear Son struggled to attend summer school for four hours, twice a week. As a result, I asked the neurologist to speak with Dad regarding school. The neurologist explained to him that Dear Son has deteriorated significantly in the past year and that he could no longer attend school on a full time basis. The most the doctor would agree to was three half days a week. In addition, he was extremely concerned about the upcoming respiratory season where Dear Son is concerned. He explained to Dad that Dear Son almost died last fall and that we may have to keep him home to prevent him from getting sick. Dad was adament about Dear Son attending school so hopefully he understands the situation a little better.

I contacted school and they are working on the transportation for school. Initially Dear Son attended on Tuesdays and Thursdays from 8-noon however now that he will be going three days a week, I asked school if we could change the days to Monday, Wednesday and Friday so that Dear Son could have a day of rest in between. Beginning next week, he'll go to school from 8 to noon on Monday, Wednesday and Friday.

Tomorrow will be ten months since Dear Son was hospitalized for H1N1 and the viral pneumonia. As you will recall he was on a ventilator within 48 hours of contracting that and it took a long time to recover. It was months before he could attend school again and when he did it was only one day a week at first. After that hospitalization, he never moved his legs/feet and ten months later, he has never recovered that skill. In addition, he lost his ability to move his arms and hands. While he can still move his fingers, he can't move his hands so if I roll him over and his hands get bent in an odd position, they'll stay that way until I fix him. Likewise, if I move him in the hoyer lift and his hand or arm is twisted, he can't fix it unless I move it. This is just another milestone he's lost and never likely to recover.

The past ten months have been tough for him and a lot of work for me. As you know, I'll never, ever complain about taking care of Dear Son however that doesn't mean it isn't work. I don't think I've worked this hard taking care of him in all the years. While it can be tough taking care of someone 24/7, it's also one of the most rewarding jobs you could ever have. There is a certain amount of pride when you devote your life to taking excellent care of someone, especially your child. He is such a delightful young man. I call him my "happy boy". When he was a baby, he always had a smile for me in the morning. After this last medicine change, he seemed a bit better and started smiling again. I had been kind of down because he hadn't been smiling anymore and looking back, I think it was just that he didn't feel very well with all of those seizures. Now, when I change his diaper he tries to talk and says "hi". I am always amazed at how hard he works to give me a smile or to say hi. It is really something. It still makes me melt after all of these years.

The care though, is taking a lot out of me. I am tired a lot and it's a bit tougher now that I am , ahem, older, to be up all night and then up all day. I give his last meds at midnight and then start his feeding pump at 3:45 a.m. so his breakfast will be done in time to get him ready for school. In addition, it takes constant attention to detail making sure his arms, hands and feet are positioned correctly along with turning him over frequently so he doesn't get bed sores, giving meds every six hours and not getting a whole lot of sleep. I've also been giving him daily massages with organic virgin coconut oil (I use Now Foods Organic Virgin Coconut Oil; it's $9.99 for a 12 oz. glass jar at Whole Foods.) to reduce the edema in this legs and feet. The coconut oil is a great massage oil so it makes massaging his legs/feet easier. Last year the cardiologist recommended massaging his legs/feet twice a day to reduce edema. Since I've been massaging him regularly, I've been able to reduce and/or eliminate the swelling in both of his legs and his right foot. The left is always swollen and the right requires constant attention to keep the swelling under control. I feel really good that I've been able to keep the swelling down. In addition, I started using the virgin coconut oil on his pressure sore on his right ear. He had a tiny sore on his ear for almost two years and I had tried everything to get rid of it. I applied coconut oil every day and it not longer has a scab on it-it is pink most of the time and some days not visible at all. Other than that, Dear Son doesn't have any pressure sores, which is remarkable considering he is somewhat bedridden. I also have come to enjoy giving him these mini massages and it's great when I can see some results.

As for school, we are blessed. His freshman/sophomore teacher is now his teacher at the Transition Center. This woman has amazing patience and it's a pleasure to work with her again. I am sure Dear Son misses his teacher from high school since she was younger but this one is really quite nice. In addition, they have worked to make sure that they are doing everything they can to help Dear Son-he is the last pick up in the morning for the school bus and the only drop off at noon. That way, he doesn't have to ride the school bus any longer than is necessary. The doctor also asked that they notify me if any kids get sick in school, so that I can keep Dear Son home if necessary, since we need to avoid any respiratory infections. They have agreed to work with me on that. We did have some issues at summer school, which I addressed with the Director of Special Education, however they have worked all of those issues out. There is a different team in there for summer school so I am confident things will go smoothly.

Other than that, it's been a bit of a relief to get three or four hours to myself once in a while. Seven day a week care is quite a bit and I've been doing it for almost a year now. I remember last year, prior to Dear Son getting sick and I used to think it was a lot of work taking care of him 24/7 on a three day weekend when school was out, but this is quite another level. I am sorry I can't blog as much but I'll do my best.

And finally, I am pretty sure Dear Son is enjoying being back at school; I got him off the bus today and he smelled of perfume.

Note: Dear Son is eighteen years old and suffers from severe developmental delay, seizures and dystonia caused by a random mutation of the ARX gene. In addition, he has a progressive neurological disease.

Dear Son Bed and Breakfast~The Meaning of Rituals

I have this little ritual on Sunday*, when Dear Son is at his father’s. On that day, it’s a day where I can sleep in and totally relax. I don’t have to go to bed after giving the last meds, which is at midnight; I don’t have to get up in the middle of the night to roll him over, or change the occasional diaper, or get up when he fusses and needs me. I don’t have to be up early to get the meds in (they are every six hours) or the food going (so he doesn’t get meds on an empty stomach) so I get up feeling refreshed. I usually try to enjoy the day and then do minimal housekeeping then get out with friends, do a project around the house that I’ve been wanting to do, or something like that.

Prior to doing that though, I take the time to change Dear Son’s bed linens. I normally do this a minimum of once a week anyway, but I try to make sure that everything is perfect when he gets home. That means fresh sheets on the bed, blanket and coverlet washed, bedroom dusted, supplies refilled (toileting and meds) and anything that makes it easier or nicer for him when he gets home. I scrub the bathtub because I know Dad will give him a bath when he gets home. I make sure the bathroom floors have been steam cleaned with my new steam mop. His bed, will be turned down, with the bed pads in place and fresh sheets on the bed. I do this for him, so he’ll know he is loved and well cared for, kind of like Dear Son’s Bed and Breakfast. When he comes home, I tell him how happy I am that he is home and I always mention that he has fresh sheets and have him smell them. I don’t have any clue if he can really smell them, and as a matter of fact, I use a fragrance free green laundry detergent so it probably doesn’t matter a whole lot but it makes me feel good. Dear Son sometimes gives me a big smile or at the very least, opens his eyes wide to acknowledge that he does hear me.

While I have always kept a clean house, I started this ritual a while back. Prior to that, I used to change his sheets on Monday and somehow this seems to make more sense since I have more time. But the bonus of this ritual is that I’ve come to enjoy it. Doing something for someone is nice if not nicer than doing it for yourself. While I do enjoy pampering Dear Son, such as rubbing his feet and legs with virgin coconut oil to stimulate circulation and reduce edema, I have come to view these tasks as a way to be thankful for what I have. Of course you know by now, that Dear Son is the most important thing in the world to me and how much I love and treasure that boy. But what I do is also for me. It’s a way to savor my days and time with him. Most Mom’s get to make meals for their kids. That’s something I really loved doing. Instead, I open a can or two of formula. It never feels right, it’s never felt right and it took me a very long time to get over that or at least accept it (tube feedings). I tried making liquid meals for him but it kept getting stuck in the feeding tube so I gave up. But my point is that these little rituals help me savor all of my time with him. It’s the same feeling you get when you sit down and eat a meal with a beautiful tablescape and a home cooked meal. It enhances the enjoyment of the meal. It also represents a shift in my thinking from “have to” to “love to”. I would hope it also sends a message to him that he’s important and that he’s loved. In the end, I suspect I am going to miss my little ritual after he’s gone. While it’s easy to wish we didn’t have to do all of these chores in the first place, it’s quite another to be thankful for the opportunity to make someone’s life a little nicer, a little more comfortable and to feel loved. I think at the end of the day, we all like that.

*Dear Son spends every other weekend at his father's.

Dear Son Update

I apologize for the long delay between postings. Dear Son is having a rough summer. I haven't commented on it much but he has been having these cluster seizures since mid to late June. Essentially, he has a lot of little seizures in a row that seem relentless. Soon, he starts crying out, I come over and use his Vagus Nerve Stimulator which may or may not stop the seizure, then the process starts all over again in another minute and continues on for some fifteen minutes. It takes a reprieve and then this process repeats itself sometimes many times in a day. It is exhausting for him and exhausting for me. I have contacted Ped Neuro on/off over these past few weeks and he's tweeked some meds but we still don't have great control. Seizure control can be difficult at times because unlike most people with seizures, Dear Son was born without an gaba, a key inhibitory neurotransmitter. Dear Son had a long seizure on Wednesday that was fairly intense so I had to use Diastat (It's an emergency medication that stop seizures.). It lasted for some forty minutes total. I was fairly certain I was going to have to call the paramedics however it did eventually stop.

He had more seizures on Thursday and Friday. On Saturday, I started tracking them in the afternoon and he had a few every hour. Last night, I was up every 1-2 hours and at 4:45 a.m. he was crying out with a bad seizure. I got up, used his VNS a few times, then got his Valproic Acid. Sometimes that helps although it wasn't due until morning. After ten minutes or so the seizure was escalating pretty fast so I ended up using Diastat. I wasn't sure if I was going to have to call the paramedics or not since the seizure was pretty rough. The Diastat stopped the seizure within about 5-6 minutes though. That was the second time in a few days that I thought I might have to call the paramedics so I know that things are not very stable.

At 8:05 a.m., he had more seizures and I gave the rest of his morning meds. Hopefully, the med increase that Ped Neuro Doc made on Friday will help. Dear Son has an appointment with him next week. At that time, they mentioned a newer med that has been working well for patients that they may try.

I'll try to post when I can. At this point, I've been doing pretty much seven day a week care since last December which doesn't leave a whole lot of time for doing much else. School starts at the end of the month and for now, Dear Son will go two half days a week. I doubt he'll ever return to full days of school at this point and the half days will be stretching it.

Sweet and Sour

Watching the Lights Go Out~2010 Dr. Charles Poetry Contest Entry

Recently, Dr. Charles announced the first annual "2010 Charles Prize for Poetry". He states,

"Bold and pretentious name aside, the award will be given to the writer who submits for consideration the most outstanding poem within the context of health, science, or medicine.
Open to everyone (patients, doctors, science people, nurses, students, etc.). 1 or 2 entries per person. Poems should be related to experiencing, practicing, or reflecting upon a medical, scientific, or health-related matter."

The winner will recieve $500 and a cherry tomato from his garden. There are three judges and the contest is open through 8/31/10.

*************************************************************************************

Here's my entry~

Watching the Lights Go Out

Watching the lights go out,
is a scary thing
or at least that’s what it seems like.

I never imagined when my Dear Son was born,
that the first ten years would be spent
trying to move forward
forever chasing the milestones
only to spend the next ten years
going back
with the lights closing in on each behavior
like a bad game of “Deal or No Deal”
where instead of dollars,
his behaviors are listed on the game board
with the lights going out as each behavior
goes away forever.

Sometimes, you don’t realize the behavior is a gift,
when it’s something small like moving your foot
and then suddenly, the light begins to flicker
and it goes out, never to turn on again.

Sometimes, though, you think it’s out and then
suddenly it flickers again…
You get excited thinking it’s back
only to find out it was a fluke
as you watch another light go out forever.

As the days go by,
you realize that there aren’t many lights left.
You wonder when they’ll all go out.
Heck, some nights, I wake up in a sweat
worried they’ll all go out at once
then I’ll be left with nothing.

Other days, I am lulled to sleep by thoughts of days gone by,
when he was full of life and his smile was a mile wide,
of happy times when he walked on his knees over to the kitchen counter
to let me know he was hungry,
and looked up at me with that big grin,
with eyes that would melt a Mother’s heart.
Oh, how I miss those days.

But now, I wake up in the middle of the night
to sounds of him choking on his own saliva.
He can’t seem to cough or swallow anymore
and the wretching sounds of his battered lungs trying to gasp for breath
take over the room...
I call out to him to cough as if doing so will help him.
In desperation, I jump up and suction him
hoping to keep the light on
one more night.

Note: Dear Son is eighteen years old and suffers from seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene; he also suffers from a progressive neurological disorder.

Charles Tillman Cornerstone Foundation~TendHer Heart Luncheon

Last month I received two invitations to the Charles "Peanut" Tillman Cornerstone Foundation TendHer Heart Luncheon. This is an annual event put on by the foundation to honor mothers of critically and chronically ill children for the sacrifices they make to care for their children. The brunch gives mothers an opportunity to take some time for themselves and talk to other mothers in similar situations.

Charles Tillman started this program after his three month old daughter was diagnosed with Dilated Cardiomyopathy. Shortly thereafter, it was decided that she would need a heart transplant. It wasn't long before they found a heart for his daughter however unfortunately, it was rejected by their physician. Sometime later, at the age of six months, she received her heart transplant. As a result of this experience, he and his wife spent several weeks in the hospital. During that time, they saw other parents caring for their seriously ill children and more often than not, it was the mother who stayed at the hospital to care for their children, often giving up their jobs and making sacrifices to be with their children. As a result of this experience, he decided he wanted to do something to honor these mothers and the TendHer Heart Luncheon was started. The luncheon was a success and is now one of five programs administered by the Charles Tillman Foundation whose mission is to provide opportunities and resources to children or families in need. But you may be more familiar with Charles "Peanut" Tillman's on-screen persona as Number 33, left cornerback for the Chicago Bears.

The invitations were sent to top three pediatric hospitals in the area and the Make a Wish Organization. I received the invitation from Big Academic Medical Center and from our contact at the Make a Wish Foundation. I was so flattered. In addition, they offered a shuttle bus from each of the three pediatric hospitals for those without transportation. Everyone was invited to use the shuttles regardless of whether or not your child was in the hospital. I drove to the hotel.

The TendHer Heart Luncheon was held downtown at a luxury hotel. Although I RSVP'd I wasn't sure if I would be able to go. Dear Son was up several times last night and has been suffering from more seizures lately. I spoke with Ped Neuro Doc on Friday and we increased one of medications so hopefully, Dear Son will be more comfortable soon.

The luncheon just happened to coincide with the filming of Transformers 3 which meant several detours. The mayor closed down several major streets for the filming which is perhaps why the carriage ride was empty. Regardless, it was pretty and the perfect day for a gourmet brunch.
The luncheon was held in the Chagall Ballroom.

Of course, I was all dressed up in my "Sunday's Best" according to the dress code. I was pretty sure this meant "new dress" so I went out and purchased one. Of course, it wouldn't have mattered what it said, I am pretty sure I would have read, "new dress", lol. Of course my earrings didn't photograph very well so it looks like I chose not to wear any which was not the case.

Soon I arrived at the ballroom. As you know, since tablescaping is my hobby, I couldn't help but take some pictures of the room. The chairs were outfitted with pink and green satin ribbons. Pink and green were the luncheon colors, both of which are also two of my favorite colors.

The luncheon was buffet style, hence no plates at the table. Instead, there were matching green napkins and gift boxes for the mothers.
Here is another picture of the room. I tried to get a few other pictures of the room however the ballroom faced the street and the outside light was in front of me instead of behind me so the photos turned out too dark to share.


As we went up to the buffet table, I had a chance to talk to Charles Tillman. I thanked him for the invitation. We chatted a bit and he talked about his daughter's surgery and how the luncheon was started. He talked about how his situation was highlighted due to his celebrity status and how his daughter's situation changed him and made him want to do something more for these mothers. I thought it was great that he used his celebrity status as a platform for his foundation. He was a very kind and extremely personable man. I was also impressed that he not only stayed for the entire luncheon but also was very interested in speaking to as many mothers as he could.
From there I proceeded on to the buffet. The buffet was located on the other side of the room so it was difficult to get some pictures however I was able to get a few photos of the dessert table that was located near our table. The strawberries were delicious; everyone especially loved them when they were coated with a little chocolate from the fountain.

Another guest helping themselves while I took pictures. I am sure she liked that.

After we were done eating, he took the time to thank everyone for coming. He talked at length about his daughter's medical situation-how they found out, how they felt, what transpired and all of the emotions surrounding their ordeal. He talked about how the luncheon came about and how the invitations are sent to the social workers at the hospitals since they are the ones who know which families have the chronically or critically ill children.

He also invited mothers in the room to share their story or to share something about their child or situation. A dozen women or so shared their stories. It was really interesting to hear their stories. It seemed that no matter where you were in your own journey, you could always relate to what they were going through and the love they felt for their children. It was interesting too to watch Charles Tillman. He seemed genuinely interested in the stories as well and no one felt rushed. It was truly a lovely afternoon.

As I heard the stories and even shared one of my own. I recalled how difficult it was when he was just a baby and didn't meet any of his milestones. You will remember the story I wrote here, called, "Don't Hate Me Because I am Beautiful" when I had asked myself at the end of the first year, just what did I have. I had a baby that couldn't do anything but yet, I knew that when I held him close to my heart and hugged him, that he was perfect. As I searched for something, I realized that what he had was the fact that he was beautiful. And as the commercial went, "Don't Hate Me Because I am Beautiful" I said, Dear Son would say, "just love me because I am."

I couldn't help but be reminded of all of the lessons I learned along the way. As different women shared their stories, I remember thinking, "Oh, I remember when I/Dear Son went through that." It was really something to not only hear what other parents have been through, but also a little reminder of just how much my Dear Son has been through. It was exciting as well as different mothers shared their stories at my own table. One lady, had a child who has been at one of the hospitals for eight months. It was her first child and she's on a vent, has a trach and will go home for the first time next month. I was lucky enough to see her beautiful photo album that she brought along with memories of the last eight months. Another lady shared a story of her three year old and all of his issues. He has a catheter and wears a bag along with a multitude of issues. But when you see his picture, he is nothing short of the cutest three year old you would ever see. You could see he got his joy from his mother and pictures like those reminded me of my own beautiful son.

After everyone finished their stories, he thanked all of the mothers for coming. He thanked everyone for "dressing up, wearing their pearls and looking beautiful." You could tell he was genuine in wanting to make every mother in there feel good after knowing all that they have been through.

Next, he thanked his foundation board members for making it a great day as well as the hotel, which is one of his sponsors. Several of the board members also attended the luncheon.

Next, it was onto the presents. Every mother received a present from one of the jewelers. They brought out a pretty tray and each mother received this gift.

Inside each bag, was a necklace that was custom made for this event. It features two hearts; the larger heart signifies the mother, and the smaller heart, the child. Once I arrived home, I decided to stage it on some pink petals so you could see it better.

Here is another picture of the bag and of the necklace. I thought it looked like a flower when I staged it.

Each mother also received a little black box from the hotel.

Inside each box was some chocolates.

Next, they gave away some special baskets with different spa treats. Others received pink or green gift bags and the rest of us received Vera Bradley gift bags like this.

Let's see what's inside...an autographed photo of Number 33, Charles "Peanut" Tillman. Oh, Dear Son is going to like that.

You remember Dear Son used to have the Chicago Bears logo on his AFOs, back when he could stand. Now he has them on his hand splints.

Next, was the spa essentials from H2O. What mother couldn't use a little pampering?

And how nice was that, that it matched my bathroom.

All in all, a wonderful afternoon.

Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene; he was one of the first boys in the world to be discovered with his particular pattern of the gene mutation and appeared in the Journal of Neurology. Since that time, he has been diagnosed and suffers from a progressive neurological disease.

Dear Son~The Graduate!

As I mentioned previously, Dear Son's High School graduation was scheduled for Tuesday, May 18th, the week of his Make a Wish trip. As you know, I was very disappointed. This year, was the only year the school had ever had their high school graduation in May and for 2011, it will be in June. What were the odds? As a result of the date, we were unable to attend. They did however decide to have a mini ceremony in his classroom, a week prior to our trip. Although I was unable to attend, they had a great time.

Prior to our trip, we had his annual IEP (Individual Education Plan). At that time, we talked a bit about graduation. It was then that I learned that they don't really "graduate" at all, instead they get a, "Certificate of Attendance". Let me explain. I was under the impression that when he completed twelve years of school, he would graduate. When he completed the 8th grade, he graduated with the class and got his diploma. At the IEP, they informed me that he would not be getting a diploma. I got that impression after reading the high school manual regarding the requirements for graduation which included the special education classes and the IEP. I talked to the Director of Special Education after the IEP regarding the diploma. She wasn't entirely clear herself and after checking with a few sources, she called me back to explain the rules.



Apparently, if a special needs student takes "for credit" classes and complete the required number of credits, they will get a high school diploma. If however, a special needs student completes their IEP but does not take "credit" classes, they earn a Certificate of Attendance. (They still participate in the official high school graduation ceremonies, complete with cap and gown.) It wasn't a big deal however I never really thought about it that much. The reason it was a surprise was because in all of Dear Son's eighteen years of school and twelve IEPs, no one had ever mentioned that he would not get a diploma. In addition, he received a diploma at his eighth grade graduation. That being said, the Director of Special Education and I had a good conversation around this topic; she was surprised that it was never mentioned in any IEPs. They did some checking and apparently, not many parents knew either. The bottom line was that they will be informing parents in the future. She asked me at what age they should tell the parents. I said they should inform them right from the start, at the early IEPs. I think it's important to know what to expect and to be honest with people. I was fine with the Certificate of Attendance but it just wasn't what I expected.


Now then, on to the party. Since we couldn't attend the graduation, they were nice enough to present his diploma and throw a party for Dear Son at school! Here is Dear Son and his classmates, getting ready for the ceremony.

I thought this was a sweet picture of his classmate and Dear Son.

Reflecting back over the years before the ceremony?

And now the "Certificate of Attendance!" His teacher is the one in the green top.

His teacher trying to help him open his hand to accept the diploma.

Of course, what's a party without a special pinata for the graduate!

Every student in the classroom gets a chance to try and knock it open!

Another classmate.

And finally, bingo!

A class photo.

Pictures with a few classmates.

Congratulations from his favorite teacher!

Time to celebrate! He's been going to school since he was three years old!

Tossing the diploma up in the air (with a little help)!

After the ceremony, they put on some party music. Each student has a song for each of the decades (70's, 80's, 90's, etc.). One of Dear Son's songs was, "Achy Breaky Heart" (Still not sure why he likes country music, lol!). When the song came on, he looked over at his teacher (O.K. stared at her across the room until she came over.). Then she asked him if he wanted to dance. Here they are holding hands and dancing. I love his face in this photo!

And finally, the diploma in his room on top of the bookshelf. It's sitting in front of one of my favorite pictures of him when he was four years old. It was 8 o'clock in the morning and he had on his Disney shirt and his new "wide leg" jeans in a size 4 slim. I took this picture in front of the flowers at my house. At that time, I told him it was my favorite picture because it's of my two favorite things, "flowers and little boys". Since he couldn't sit up alone, I sat him on this little white chair. I figured I'd take a lot of pictures hoping one would turn out. As he sat on the little chair, he slowly started to turn his body around trying to get his foot into my flowers. He knew he wasn't supposed to do that and he ended up laughing so hard that he fell off the chair. When I got the roll of film (this was before digital cameras), I fell in love with all of the photos and framed them all.

And now, the diploma and his graduation picture sit in front of the photos of Dear Son as a little boy. It seemed like he went from four to eighteen overnight. My how time flies. All these years when he would be really sick in the hospital, I would pray that he would get well and that he'd live long enough so could see him all grown up. I wanted to know what he'd look like as a man. So Dear Son got his wish and I got mine. I am so happy I got to see him grow up.