Dear Son's Make a Wish Trip-Day 1-We're Off to Orlando!

It was hard to believe that one year ago, we spoke with the Make a Wish organization about a wish for Dear Son and the day had finally arrived for us to leave for Orlando. Back in October of last year, I created a Make a Wish travel notebook to help me prepare for our trip. During our trip, I kept a journal of each day of our trip, so I could share it with you and also remember all of the glorious details of our special trip. A special thank you to Laura and Angela, our wish sponsors, along with the Make a Wish organization, for making our trip a great one. So let's get started!

Sunday, May 16, 2010-Day 1

Our flight for Orlando was scheduled for 11 a.m. so the limosine was scheduled to arrive at 8 a.m. I had been up all night trying to make certain that I did not forget any little detail and to try to make sure the flight went smoothly. This would be the most challenging day of the trip, since I wasn't certain if Dear Son could sit up long enough to make the actual flight, let alone sit up at the airport.

Windy City Limousine was scheduled for 8 a.m. which meant I needed to get Dear Son's feeding started at 3 a.m. It's a four hour feeding in the morning and I wanted to give him an hour to urinate so we wouldn't have to worry about him going to the bathroom on the plane since he is not toilet trained. Everything seemed to be going fine and the limousine arrived 15 minutes early. The limousine was really something. It was actually a large, white brand spankin' new bus with black leather seats. It was only ten days old and nearly the size of a regular city bus. It even had the "new car" smell. It was great to finally be on our way to Florida. I had talked about this trip with Dear Son for months and it was great for it to be actually happening.

I had printed our boarding passes and checked our bags the night before so I could use curbside check in. Once that was done, we went into formerly nation's largest airport where the TSA whisked us through. We never waited in line and it went pretty fast. I asked for a "visual" inspection instead of going through the normal security since Dear Son has a Vagus Nerve Stimulator implanted. Everything went great!

Dear Son sleeping at the gate.

Once we arrived at the gate, I asked to gate check Dear Son's wheelchair and requested an aisle wheelchair to get him on the plane. They gave me a receipt for his wheelchair. At the gate, I chose to lie Dear Son down so he could rest enough to sustain the ride. Fortunately, the benches did not have arm rests so I could do this. (This was not the case at the Orlando airport so on the return trip I was unable to lie him down to rest at the airport.) We were quite early for our flight so we spent a few hours at the gate.

Dear Son sleeping at the gate.

As our flight time got closer, no one had arrived to take Dear Son's wheelchair. I went to the gate again and finally they sent someone to look at his wheelchair. The flight began boarding and we still did not have an aisle wheelchair to load him on the plane. I spoke with the agent at the gate again and they said they were paging the TSA and that they were responsible for the aisle wheelchair. The entire plane was fully boarded when they finally arrived. We were the last people to board the plane. The TSA states they were never called. We ended up using Dear Son's wheelchair to get him to the plane and then transferred him to the aisle wheelchair so he could get on the actual plane. Because Dear Son has no tone, his arms and legs flop all over. This made it tough for him to sit in the aisle wheelchair. Dad ended up placing the straps over his arms in order to keep him from falling out of the aisle wheelchair.

Dear Son in the aisle wheelchair. This wheelchair is narrow enough for him to board the airplane.

Due to Dear Son's low tone, Dad had to strap his arms in to keep him from falling out of the wheelchair.

Once he was on board, we had to transfer him to the seat. Dear Son and I had a first row seat in the coach section which was the only row that had enough room to transfer him. Dad was supposed to sit two rows back however at the last minute, when the man with the aisle seat saw the difficulty in transferring Dear Son, he switched seats with him. It was difficult getting Dear Son out of the aisle wheelchair and into the seat. Dad had to lift him from the aisle wheelchair, into the aisle seat and then we both assisted in transferring him to the middle seat. And the entire plane got to watch us do this, lol.

Dear Son was fine until the plane started to move for take off. Then he got a little scared and looked like he was going to cry. We both held his hands and he seemed to hold on for dear life. This was unusual for Dear Son since he's usually a pretty brave boy and I've never really seen him be scared of anything. He's changed a little since his hospitalization in November though and isn't quite himself as much. I started talking to him about how exciting it was to fly and how he would love the take off. I told him that was my favorite part. I told him the pilot steps on the gas so the plane would go really fast and that I thought he would like it. I told him men really love this part and that a lot of the pilots were men. He listened intently and soon the plane started going faster and Dear Son's head went back into the seat. As soon as the plane took off, Dear Son had a big smile on his face and he really seemed to like it. He kept smiling after that and I continued to talk to him about the ride.

During the flight, the man who gave up his seat came back to our row to help his wife and kids. He had two special needs children, one had Down's syndrome and was a diabetic. That child ended up getting sick on the plane and throwing up. The other child had cerebral palsy but could talk. These parents had their hands full. We talked to them after the flight since we both had to wait for aisle wheelchairs to arrive. We had to wait for the entire plane to get off and then another twenty minutes or so for the aisle wheelchairs to arrive. United needs to put a system in place so that disabled people can get the aisle wheelchairs on time.

The plane ride went smoothly. Dear Son didn't go to the bathroom at the airport or on the airplane. I did put a few pads down on the seat, just in case, but we were very lucky. I managed to feed him his lunch on the airplane and gave his tube feedings via syringes. I had packed everything in a carry on bag for the feeding so it was very easy. Some people had suggested that I not feed Dear Son to keep him from urinating however I don't think that any of us would like to go on vacation and be hungry or not be able to go to the bathroom at the airport. I believe in treating Dear Son like I would like to be treated.

Dad and Dear Son at Orlando Airport.

Once we arrived in Orlando, we picked up the wheelchair van from Vacation Mobility*. He met us at the airport and wore a red derby hat so we could spot him easily. They are a gracious company and very friendly. They had contacted us two days prior to our trip to confirm. Since I don't have a wheelchair van, they needed to show us how to tie down Dear Son's wheelchair for transport. He instructed Dad on this procedure and we were off to the resort.

Dear Son checking out his new wheelchair van.

We arrived at the Give Kids the World Village. After check in, we went to our villa and were greeted with a bag full of presents for Dear Son. His favorite present was the stuffed Mickey Mouse. I told him this was the same Mickey Mouse he sees on t.v. on Saturday mornings. He seemed to get it then and really liked Mickey. It was one of his favorite gifts.

Lobby of Give Kids the World Village.

Dear Son arriving in the lobby.

Someone's always watching over you in the lobby!

Our villa was complete with a washer, dryer, full kitchen and whirlpool, which I loved. The washer and dryer made life easier for us since we often need to do a lot of laundry with Dear Son. The Make a Wish organization had also offered to provide all of our supplies at the villa so we wouldn't have to transport all of them. This was huge since the volume of supplies I would have had to pack would fill two suitcases. Most of the supplies were delivered but there were a few glitches. The hoyer lift wouldn't roll so it wasn't usable. The hospital bed was delivered however only the head and foot of the bed raised and lowered but the actual bed did not. This made diaper changes hard since it's tough to bend over. The medical company shorted us on a few of the supplies and had contacted me the week prior with difficulty in getting the formula and had me bring two days worth. Unfortuntately, the were late and it didn't arrive until the third day however I had brought extra formula just in case. None of this was Make a Wish's error since they everything was confirmed prior to our trip. I contacted MAW to let them know we didn't have all of the supplies and they fixed that promptly. We got by without using the hoyer lift all week as Dad did all of the lifting and most of the changing since I can't bend over very well after my back surgery.

We spent the rest of the day relaxing in the villa. We knew the trip would be a lot for Dear Son so we didn't plan anything for the first day. All in all, a great day and everything went pretty smoothly. We were thrilled to finally be on vacation.

Notes: *Vacation Mobility provides wheelchair accessible van rentals along with scooters and power chairs.

Make a Wish Pictures...

Photo of Dear Son and I at Give Kids the World Resort.

I just downloaded the photos (509!) from my camera last night along with another 200 from Dad's camera. I'll need another day or two to go through them before I can get them on the blog. Sorry to take so long. I've been swamped with work, errands and e-mails since I've been back. Until then, here is a photo of Dear Son and I at the Give the Kids the World Resort. We are standing outside of the Merry Go Round. The Merry Go Round is wheelchair accessible. They have a large, green turtle that opens up to let the wheelchair on for the ride. I'll show pictures of that soon.

We're Back!

We left last Sunday at 8 a.m. for Dear Son's Make a Wish trip to Orlando, Florida and arrived home this evening. We had a fantastic trip! I took along all of the suggestions everyone had given me prior to the trip and made a list of them for each of the theme parks. It really helped having some good ideas as I planned each day. In addition, I kept a journal of our activities each day and some of the highlights. I took a ton of pictures and will take you through our trip each day. In addition to photos of the activities and Dear Son, I also took photos showing the accessibility of each of the rides or the parks so you could see how it was done. I'll need a few days to get through the 800 plus photos but I think it will be worth it.

Some of the things Dear Son really enjoyed were the following:

• Dear Son loved the takeoff! This was his first plane ride and he seemed a little scared and was crying a bit when the plane started to move. He actually was holding both of our hands. I talked to him and told him how exciting it was when the plane takes off. I told him that it was my favorite part and that the pilot would step on the gas and go really fast. I said that "men" really like that part and that most pilots are men. (He likes when I tell him that men like things, lol!) Anyway, as the plane took off, he was smiling ear to ear as his head fell back into the headrest from the takeoff! Today, one of the flight attendants gave him some "wings".


• He got to see Barney at Universal. They did the show and he wasn't sure what to make of it all. We bought a big Barney pillow and had pictures taken with him. On Friday, Barney was scheduled to appear at Give the Kids the World and when I told him Barney would be there, he got really excited. He started getting it after a few days. The first few days I think it was a lot to take in.
  
• At Epcot, we went on the Soarin' ride! It's a virtual reality ride and you sit in these seats and they move the seats up into the air as you watch the screen. Trust me, you really feel like you are there! I tried to take some pictures while I was on it to show you however I am not sure if they turned out.


• At Sea World, we saw Shamu and the sea lion show which was fantastic! Very entertaining. We enjoyed it.
  
• Dear Son went swimming several times this week at the Give the Kids the World pool. We used an accessible wheelchair to get him into the water. It took him a little bit to relax and finally he layed his head on his Dad's chest while I held the wheelchair. Eventually, he relaxed and brought his knees up the surface of the water and just floated like he did at school. He loved it! After that, he layed on the lounge chair and closed his eyes. It was extremely hot and humid this week so the pool became one of our favorite activities.
  
• He ate ice cream three or four times this week! Dear Son hasn't eaten anything via mouth in around 18 months since he can't swallow very well however he was able to eat a few bites of ice cream and a softened vanilla milkshake!


• He had pictures taken with a few characters-Mickey and Minnie, Scooby Doo, Goofy and Barney!


• I got a cartoon drawing of Dear Son done at Sea World to remember this trip.
  
• Every day, the resort brought gifts to the room for him. Two of his favorite gifts were the picture frame that played the ESPN theme song and a Mickey Mouse stuffed animal.

Some of the things Dad and I appreciated this week were:

• The wheelchair van. That made our life a lot easier!


• The whirlpool in the room. I used that every day this week.


• Not having to wait at the theme parks. Many of the parks had these accessibility passes that Give the Kids the World gave us; once you showed the pass, you were taken to the front of the line and got right on the ride. They really catered to people with disabilities since they often can't wait. In many instances, once Dear Son was on a ride, they asked him if he wanted to go again so we didn't have to take him on/off a ride.

But most of all, we want to thank our Make a Wish (MAW) sponsors, Laura and Angela, for providing us with the trip of a lifetime. At the MAW office, Courtney worked hard at putting everything together for us. And we have to thank all of the people who made it a great week for us. The entire staff at Give the Kids the World, plus all of their volunteers, made it a relaxing and enjoyable trip. I am sure I am forgetting a few people however I will be including them as I go through and post pictures from our trip.

It was a wonderful trip for so many reasons. It was great to pack and go somewhere other than the hospital. It was great to relax and not think about medical stuff 24/7. It was wonderful to see Dear Son experience so many things that he would never have a chance to see otherwise. It was great to see him happy. On a personal level, it was wonderful to relax for a change and put my feet up. I savored every moment of the week. There weren't any meals to cook, no cleaning to be done, just fun and sun.

Last Minute Trip Preparation

We leave on Sunday for Dear Son's Make a Wish trip. Everything is going pretty well except that Dear Son had a few issues of concern prior to our trip.

Dad picked Dear Son up for the weekend on Saturday night and noticed some bruises on his right inner calf. I didn't notice them prior so I asked him to send me some pictures of them. They looked pretty bad and I couldn't figure out how he got them since it's not like he can move his legs at all anymore and he can't really bump them at all. I was swamped at work on Monday so on Tuesday, I called his teacher to see if there were any accidents at school at all. She went through his day and said that no one had noticed anything and there weren't any accidents.

Dear Son had some bruises on his left outer calf back in February. I mentioned them at our late February office visit. They were small and yellow and never really went away. Anyway, when these bruises came up on his right calf, I was concerned.

I sent pictures to Ped Neuro doc and followed up with him today. He functions as Dear Son's primary doc. He requested that we get some lab work done at the Local Hospital since low platelets can sometimes cause the bruising. He wanted to see the results prior to our trip in case he needed to make any changes to his meds. Ped Neuro Nurse explained that Depakote can cause clotting issues so the doc wanted some labs done to check his platelets. If the count comes back in range, he won't adjust anything but if it comes back low, he'll decrease his Depakote. Interestingly enough, one of the other neurologists had increased his Depakote in December and Ped Neuro Doc had left him at that dose.

As a result, I had to call Dear Son's Dad to come back over to our house so we could take Dear Son in for lab work. Dad wasn't too happy because he had just driven a 100 mile round trip in the morning to come over and take Dear Son's wheelchair in to be repaired and then he had to come back over tonight to get the lab work done. He works twelve hour days tomorrow and Friday so he needs to be up by 4 a.m. tomorrow.

Anyway, while I was changing Dear Son today, I noticed that his right testicle seemed enlarged a bit. I figured I'd have the ER doc check it out since we were there for lab work. He decided to do an ultrasound to make sure Dear Son didn't have an abscess; if it was a cyst, it would be fine but an absess would be a bigger deal. It wasn't red, pus filled or swollen so it didn't really seem like it would be an abscess however they did an ultrasound anyway and it turned out to be a small cyst.

The lab work was done stat and the platelets came back low which could explain the bruising. The ER doc said the bruising does not seem consistent with the bruising from a low platelet count but we'll have to see what Ped Neuro Doc says. I can't for the life of me figure out how he could have these bruises since he really can't move his legs at all. Even when I move him in and out of the sling for the hoyer lift, I never touch his legs at all since he is so heavy I have to roll him side to side to get the sling under him and once that's done, it's a matter of using the hoyer lift to lift him. When I roll him over at night, I have to lift his hips to turn him so I never even touch his legs so this is a bit perplexing. I do however have to lift his arms to position them.

We'll see what Ped Neuro Doc says tomorrow. I am totally exhausted today though. We didn't get home from the ER until 10:40 and Dad still has to drive some 50 miles to get home and then be up by 4 a.m. tomorrow to work a 12 hour day. I was up with Dear Son at least once an hour last night turning him over from one side to the other. He seemed rather fussy and perhaps it was the cyst that was bothering him. I don't know. It's difficult for Dear Son since he can't move his arms or legs so if anything hurts or isn't in a good position, he can't help himself at all.

On a good note, they had a nice little graduation party for Dear Son at school. I'll share all of the details once I get the pictures from school.

The Make a Wish Foundation called me today to confirm all of the last minute details. Everything seems ready to go so I hope it all goes well. They have done a great job getting everything done for us so we can have a great trip. I am looking forward to it as well.

Update: I spoke with doctor's office today and they reviewed Dear Son's lab results. The platelets were very low at 75,000 (range is 140,000-450,000) and they told me the bruising was definitely caused by the Depakote. I was instructed to hold the Depakote for 24 hours and they also reduced the dose. The platelet count should go back to normal in about ten days. I'll follow up with the doctor when I return for next steps. This is a huge relief!

Make A Wish Trip

It's hard to believe that our trip is almost here. While I've been talking to Dear Son about our trip and the things we will do, I haven't really believed it myself. Last year, I never quite believed we would go and as it turned out, we didn't. This time, I tried not to think about it too much, in case it didn't work out, but it's starting to feel like it might happen. I was creating my to do list for next week and realized that it was the last week before our trip. I guess I'll have to start checking my Make a Wish book to see what I need to do. Prior to our last trip, I made a notebook filled with a to do list, plus the itinerary and everything we'd need for our trip. So everything is pretty much done, other than reviewing the list.

Dear Son is starting to get excited too. I keep asking him when he wakes up if he was dreaming of our trip to Florida. Today, I told him that it was going to be pretty nice down there and that I'd have to buy some suntan lotion. He looked at me and then gave me a big smile. I told him that they were going to have to find someone else to fold the towels at school because he was going on vacation. He really like that.

Later today, I talked to him about the Polynesian Luau. I talked to him about what the girls would be wearing and showed him how they would be dancing and he really seemed to enjoy it. Hopefully he was laughing with me and not at me although he did seem to laugh a bit more the more I danced. He does have a pretty good sense of humor though.

I am glad to be getting away as well. I was changing Dear Son the other night at 2 a.m. and was ready to fall over in exhaustion. I just wanted to get him changed and go back to bed. Well, as it turned out, I had to do an entire bed change. It's a little challenging to do this when he's in it and at that time of night, I was all thumbs. I just wasn't coordinated in the middle of the night and everything I did took twice as long. All I can remember was praying for the Lord to help me get through the task because I was so tired. As I finished up the task and had the new sheets on, Dear Son says, "hi". It was the sweetest and most beautiful sound I could ever hear. Suddenly, everything seemed better. I gushed all over him and gave him a big hug. I told him that it made my day. I have been having a harder and harder time lately due to this sporadic sleep schedule. I am up every two hours at a minimum and night after night it really gets to be pretty tough without getting a full night's sleep. It's also seems to get harder every year since I too am getting older and getting one full night's sleep every two weeks just isn't enough.

So I think we are all ready for the trip. It will be good to have some help from Dad all week and I plan on trying to get a massage on the trip. I haven't had a massage since I worked full time, some ten years ago. I am definitely ready. I doubt I'll be able to get up when I am done since I'll be so relaxed, lol! But the best part about packing will be that we will be going somewhere other than to the hospital.

Dental Visit and the Hello Kitty Alarm Clock

Our Munchkin cat, Wiggles.

The dental appointment went well. The dentist was pleased at how well Dear Son's teeth looked. His teeth looked great under the light, plus there wasn't any plaque near the gums and his gums were healthy. One concern we had was his gum overgrowth and the thickness of the roof of his mouth. It seemed to have gotten progressively worse since he was hospitalized with the swine flu. Dear Son hasn't been on Dilantin in years, which frequently causes gum overgrowth. He said that the gum overgrowth and thickness is somewhat typical of the seizure kids he sees (The dental office is for special needs patients.) and I don't have to worry.

While the outside of his teeth looked great, I was conerned because I have not been able to clean the tops and bottoms of Dear Son's teeth (where they meet) very well since he's had the swine flu. Once he got out of the hospital at the end of November, he had these thick mucous plugs that he would cough up. His scopolamine patch dried up secretions so it essentially dried up the mucous and he'd cough it up or it would dry right on the roof of his mouth. I had to go in there with a toothbrush and dislodge it off the roof of his mouth. As a result, he got very defensive and didn't want me to go in his mouth for regular tooth brushing so I have only been able to brush the outsides of his teeth and on occasion, the inner parts even though I try every day. The dentist was able to check his teeth and Dear Son didn't have any cavities but did have some plaque on the molars however he wasn't concerned. He said it was minimal and because Dear Son feeds via a g tube, it's highly unlikely he would get a cavity.

We also talked about Dear Son's risks for sedation. In 2008, we had his teeth cleaned and sealants put on under sedation however with Dear Son's current health issues, sedation presents two huge risks: respiratory depression and aspiration. In light of this, the dentist was able to clean Dear Son's teeth while we talked. Dear Son was quiet and sat back in his wheelchair while we talked. The good news is that we don't have to come back for a year and the teeth cleaning is done!

The next day, he went to school for "Fun Friday." Last Friday he cried on the bus and the CNA asked him what was wrong then told him he was going to have a fun day and he stopped crying. He's never cried going to school. So this Friday, I had a substitute nurse for the bus. I explained what happened last week and told her if he cried, she may have to tell him he was going to have a great day and things should be fine. We had a good laugh over that.

Dear Son did have a great day. For the first time since October, he was able to sit in a rocking chair at school (they secure him in there and have someone next to him) and push his feet to rock himself. He had lost his ability to move his feet and legs after the swine flu. This was a very good thing. They also had a little action at school; some senior high school student pushed the fire alarm so they had a false alarm. Dear Son thought it was pretty fun though, when they had to run through the halls pushing him in his wheelchair. He likes a little chaos.

My Hello Kitty Alarm Clock

On a different note, our cat is confused with Dear Son's school schedule. Dear Son goes to school two half days a week, on Tuesday and on Friday. Our cat however remembers the old school schedule. Back in October, I'd get up early to start Dear Son's g tube feeding then go back to bed for a few hours until it was time to get him ready for school. The cat knew the time and if I overslept, he would wake me up by standing near my face and meowing. Well, once the cat gets wind that Dear Son is going to school, he then assumes that Dear Son will go to school every day so he now wakes me up the following day, thinking it's a school day. So every Wednesday and every Saturday he starts meowing very early to let me know that it's time to get up for school. He starts by meowing, then runs around a bit, then comes back and meows some more. Then if I don't say anything, he stands in front of my face and meows loudly. When I open my eyes, he's like two inches from my face. Today, he kept meowing even though I told him Dear Son did not have school today. Finally, he bit me and ran away. Honestly, it's just too funny. It's great that he can tell time, lol, but now I need to teach him the days of the week.

The Make a Wish Trip itinerary arrived today! Our trip is only a few weeks away!

Suction Machine Update & Dental Visit Tomorrow

The home healthcare agency came out today and replaced the suction machine. The one I had was defective. I did have it set up properly though so that was good. The new machine works great.

Prior to coming, I told Dear Son that they were coming out to fix his machine. I told him that when he was choking I could take the tube and go "bzzt" and get the saliva out for him. He smiled when I told him that. I have to try to create some excitement when we get new equipment so he'll let me use it on him.

After the tech left, I tried it out on Dear Son. He was a little startled by the noise however he did let me in his mouth enough to get out some saliva.

We'll see if he is as eager to let me in his mouth after I take him for his dental check up tomorrow. He seems to have a lot more gum overgrowth, along with extensive growth on the roof of his mouth since his hospitalization last November. He is not on any medication that should cause this, so we'll see what they say.

We see a dental group that is affiliated with a big city hospital. They take care of mostly Medicaid children and poor adults with multiple mental and physical disabilities. It took a while to find a dentist who could see a child like Dear Son but I found this group over ten years ago. I had tried three other dentists but none were able to care for Dear Son. It is amazing to go there. Every patient has significant impairments and that is the only type of patient the dentists see all day. Can you imagine that? It's quite impressive. They have dental students there as well since it's a dental school. What's great too is that it's right across the street from the hospital. This is important since if the patient ran into issues during a procedure, they could wheel him across the street for an emergency. Something to think about when you have a special needs patient.

The dental school is very well run however. They group their days by visit type so one day a week they do all cleanings, another day all fillings, etc. Some special needs patients have to wait several months to get a cavity filled because this is one of the few places that know how to take care of people with severe disabilities. The average dentist can't manage a patient like Dear Son even if they say they take children:) It's also tough because many of these patients don't have dental coverage or their families or caregivers never took them to a dentist. Unfortunately, dental health falls to the wayside for some families in light of the patient's more pressing issues.

We go for a visit tomorrow and then after that, they'll set up a teeth cleaning for Dear Son. To get a teeth cleaning, there is typically a six month waiting list and they won't see the patient until they have a preliminary appointment like we do tomorrow.

To clean Dear Son's teeth, they typically put him under a bit. It's very challenging because they clamp the mouth open and won't allow the patient to close their mouth until they are done. It's pretty uncomfortable and I don't know that he can do that anymore. The last time he was crying out while they did it and it was very hard on me to sit in the waiting room and listen to him cry. (They also typically tie the patients hands down and I don't allow that. After all, I wouldn't want it done for me and I don't allow people to do any procedure to a special needs child that they wouldn't do to a normal child.) When you or I go to the dentist for a cleaning, they don't clamp our mouth open. When we go, they'll take out the suction device and allow us to swallow or to reposition ourselves but for the special needs kids, they keep them clamped open since it's too hard to get them re-clamped again. I don't like that part really and find it enormously stressful. Dear Son's never had a cavity in eighteen years though. We had an appointment last year and had to cancel due to his hospitalizations.

Aside from the clamp, they do a great job cleaning the teeth. The anesthesiologist is pretty good too. I felt really confident when I met him since he wasn't fazed at all by the number of medications Dear Son was on. After all, most of their special needs patients are on a lot of meds. I was able to have his teeth cleaned previously and had sealants put on all his teeth.

Thank you for all of your comments on the suction post. I really appreciated your support.

Suction Pump Aggravation

Dear Son's been choking a lot tonight so I pulled out the Devilbiss Homecare Portable Suction Machine that I got a few weeks ago. I checked it out when I first got it however there weren't any instructions included. Why a homecare company send out a machine without instructions is beyond me. Anyway, since he was choking so bad, I got up at 1:40 a.m. to go on-line to find the instructions. I was able to download a pdf file however the machine still does not work. It appears I had connected everything properly however I don't have any suction on the machine. I can't quite tell if the knob is off on the side or if that is how the unit comes. It looks as if it's missing the knob however when I compare it to the photos in the instructions, it looks as if there isn't a knob there either. I can turn it though however I can't get the guage to increase and the guage controls the suction. I wish now I had watched this a little closer at the hospital. I hate this kind of thing so I typically look the other way.

The machine is rather noisy. When I got the script for a machine, I requested the smallest machine that was available. I don't have a lot of room here and when they write a script or order equipment, you have to specify what you want or you typically get older models or older equipment. (Typically equipment will be on a rental basis and convert to a purchase once the rental costs is equal to the purchase price.) I should have requested a small, quiet machine.

Dad had taken Dear Son Saturday night and brought him back today. He was discouraged because Dear Son was choking all day and couldn't clear his throat.

Around 2:15 a.m. I decided to check the medication sheet that I created to see if Dad had changed Dear Son's scopolamine patch. The patch needs to be changed every three days otherwise Dear Son can't clear his airways since the patch is no longer working to dry up his secretions. I write the date the patch was changed and the next date the patch is due to be changed. It appears Dad forgot to change the patch on time which explains why Dear Son was struggling on Monday. He had a copy of the sheet with the dates on there but this happens sometimes. I won't know for sure until I call him in the morning but I changed the patch now just in case. The effect is not immediate since it's time released but it should help him in a few hours. I read about how the patch releases the medication a few months ago.

Sometime, later today, I'll call the homecare company and see if they can send someone out to show me how to use this machine. It's very aggravating at times like this when you need to use this equipment and you can't get it to work.

This is especially aggravating for me since I really hate nursing. I don't want to be a nurse nor do I enjoy suctioning. I agreed to this machine only because I figured there would come a time I would need it and I was hoping perhaps that I could stomach doing this job to help Dear Son. I am only considering suctioning his saliva in his mouth and not any deep suctioning. I can't stand that. In the hospital, the deep suctioning drives me crazy and I typically won't let them do this. I worry that it's painful, shoving that tubing down him (You saw the bloody pictures I posted the last time they attempted it!). I understand why it needs to be done, I just don't like it.

It's really uncomfortable too, because I feel so much pressure to have to do this. The doctors and nurses can't fathom why I don't like this. They seem to feel it's something that isn't a big deal and that I should do it. I absolutely hate it. I don't think that just because I am the mother to a special needs child that I have to love all of this medical stuff. There comes a time when you just reach your limit on what you are willing/capable to do. Now I certainly love Dear Son and I think that I go to the ends of the earth for a lot of things for him. You will never hear me complain about changing diapers or taking good care of him but we all have things that we don't like to do and this is mine.

So it's 3 a.m. now and I am off to bed for a half hour or so. Dear Son has a 9 a.m. appointment in the morning so I need to start his g-tube feeding at 4 a.m. so it will be done by 8 a.m. I should probably start it around 3:30 a.m. to give myself a little more leeway but Dear Son has school today, if he's not too tired. Our appointment is at 9 and the bus comes at 11 a.m. to take him to school for 3.5 hours. If I start the feeding too much earlier, he'll be hungry before lunch. Somehow I don't think that he'll be up for school but we'll see. He went to school last Friday and had his eyes closed already while he was loaded onto the school bus. On the way to school, his aide said that he started crying and tears were streaming down his face. She asked him why he was crying and told him that it would be o.k. and that he'd have a great day. Apparently, that cheered him up and he stopped crying. In 18 years, Dear Son has never cried going to school. I worry that things are taking a toll on him and that it's exhausting him.

Update: I checked with Dad this morning and he forgot to change the patch. That happens sometimes.

Also, I received a comment regarding the fact that I shouldn't state that I hate suctioning or nursing. I have clarified that in the comments section. A better way to verbalize that would be to explain that I have a terribly weak stomach and suctioning is upsetting to me. It's embarrassing to me to have to explain this to people when they've made assumptions that I should be o.k. with all aspects of nursing since it's my child. The fact is that not all of us are capable of doing these tasks.

Playing Possum To Get Out of Housework?

Image courtesy of Martha Stewart~She recommends using a cutting board for perfect folding.

Dear Son started attending school two, half days last week. Last Tuesday, one of his jobs at school was to fold towels. I wasn't sure how he could do this, since he has little use of his hands and arms, so I had asked one time, how he did it. Apparently, they place the towel on the tray of his wheelchair and he uses his right forearm to shove one end of the towel towards the other.

Well, Dear Son wasn't too excited with the prospect of folding towels so apparently, when they brought the towels over to him, he conveniently fell asleep. Unfortunately, as soon as they removed the towels, he woke up so they thought he was "playing possum" to get out of folding the towels. This was a good strategy on Dear Son's part and was very effective when he used it once last year to get out of shredding paper. He closed his eyes when they turned the machine on and then opened them when the shredding was all done. After he got off the bus last week, his CNA, who is also his bus aide, told me the story about Dear Son playing possum when it came to folding the towels. We had a good laugh and I teased Dear Son later about playing possum and told him that I didn't think that men liked folding towels. He smiled.

Fast forward to yesterday when they brought the towels around at school. He decided to play possum again however as soon as he closed his eyes, his CNA whispered into his ear. She said he didn't need to "play possum" to get out of folding the towels. She said that she would do most of the work to help him and that it would be easier. Apparently, negotiation works for him. He opened his eyes and smiled at her. She helped him with the towels and he was able to move his fingers slightly when he was ready for her to give him the towels.

Disappointed...

I had Dear Son's IEP yesterday*. This is the Individual Education Plan (IEP) that is created annually where we define Dear Son's goals for the following year. We were all gathered at the meeting when someone asked about his Make a Wish trip. I said that he had been approved to go and that all of the arrangements had been made (hotel, air, etc.). His teacher asked for the dates. As it turns out, the week we are going on our trip is during Dear Son's high school graduation. He will miss his graduation. I couldn't believe it.

When Dear Son got sick in November, I had a conversation with his teacher and I asked her to keep me informed about two things: his yearbook and graduation. Also during that time, it came time to order his cap and gown and she gave them his sizes since we were in the hospital. As you know, Dear Son was out of school for months and has only attended three, three hour sessions to date. During this time, I had signed up and was receiving a daily e-mail from school regarding school activities. There was no mention of graduation.

When I got the approval for our trip, I checked with Dad's work schedule for dates; we had a few weeks to pick from. Since I am self employed, I can adjust my work schedule accordingly. I assumed high school graduation would be in June and not in the middle of May (Yes, I know many college graduations are in May but this is high school.).

I am really disappointed. I had Dear Son's graduation picture taken last summer in his cap/gown. We don't have any other events planned for Dear Son for the entire year and yet graduation is the week of our trip.

I know for many people this may not be a big deal. But for a parent of a special needs child, it is, or at least it is for me. Dear Son doesn't have a lot of milestones in his life. It's not like there will be a college graduation, a marriage, a first house or any babies. There isn't any driver's license to be had. There just aren't a lot of milestones. As a parent of a special needs child, I just want the things other people have. I want to celebrate a graduation. I want to see him all dressed up. I want to see him go across the stage and get his diploma. I want to see him with all the other kids that he went through school with and get the diploma. That's what I want for me. And for Dear Son, he'll love it when everyone is there and all of the hoopla around the event.

This is high junior high graduation. You can see him in the stone colored pants at the far end of the photo.

But graduation is only an hour or so. The tickets have been purchased for the trip and they already did this once for us. We are fortunate to go and I can't ask that they reschedule again. I don't want to complain that our trip is scheduled the same time as graduation. That's known as a high class problem when you have the opportunity of a trip of a lifetime and something else at the same time. You just can't go there.

All dressed up for his 8th grade graduation.

I will however miss this. Back in 2006, Dear Son had a MRSA pneumonia and nearly died. He was on a ventilator and we got out of the hospital and had only been home a week when his eigth grade graduation came up in early June. I had asked the doctor if it would be o.k. if we could go but he didn't think that Dear Son was well enough. Well, I decided to get him dressed up anyway and we went. I thought if he died, I wanted to see him graduate. The whole thing was about an hour. I took pictures before we left and it was exciting to see him go across the stage and get his diploma. Actually, the wheelchair kids weren't on the stage but they came down to the main level to give them their diplomas and it was really exciting. We were in the first row. Afterwards, I took pictures of him and his classmates. It was good to see all of the kids together. They went to elementary school together, then junior high and now high school together.

Here is a picture of his teacher (in the white skirt) and his classmates.

So it's unfortunate that it won't happen. As Dear Son's mother, I've seen how hard he has worked over the years to earn that diploma. While special needs kids don't graduate with the same knowledge as regular kids, they do have an education plan and they have worked hard as well.

In the end, we'll have a good trip. I'll keep my focus on all of the fun things that we'll do in Florida. Those will be things that will be important to Dear Son. My goal before he died was to see him happy and that's what we've been given the opportunity to do. It's a once in a lifetime opportunity and once in a lifetime trip and we will make the most of it. It will be good to pack for a trip instead of the hospital. In the end, I suppose it really won't matter so much that we missed his graduation. I just wish it could have worked out a little differently.

*Post was written on Wednesday.

Fading Away...

I wrote this post last week and thought you might enjoy it.

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I remember Dear Son sitting at the daycare center getting ready to kick the ball. Dear Son, sitting on the floor, his right knee up and his left foot and knee on the floor, in position to kick the ball. The daycare worker was less than five feet away, ready to roll the ball over to Dear Son so he could kick it. Dear Son was ten at the time, and for most kids, they’d be kicking a ball elsewhere by now but he rather enjoyed sitting there ready for action. He’d lean back somewhat on his hip with his hands in the air, not really contributing to his balance at all, just hanging out in the air somewhere, oblivious to the rest of his body. I laughed to myself as I looked at the daycare worker, knowing that she was seriously underestimating Dear Son. I could either spoil it for Dear Son by telling her to back up or give him the pleasure of winning for a change. I choose the latter. The ball rolled forward towards him and he smiled in anticipation. In one fell swoop he belted that ball as hard as he could straight at her. Normally, he hits them right in the gut because they are typically standing way too close but this time, she dodges the ball and has to run far to get it. He laughs heartily. If there is one thing about Dear Son, he has a great laugh and a great smile. It’s times like this, that well, he is perfect.

Dad was reminiscing about Dear Son, about the times he used to kick the ball with his foot. He wished he could do it again and suddenly, now that Dear Son can no longer do those things, he has to deal with the ugly reality that things won’t ever be the same. It happens more often now, remembering back to when he walked on his knees in the kitchen when he was hungry or scrambled towards an open door walking on his knees as fast as he could to try to get outside before you could “catch” him. All the while, he had a big smile on his face. He was the happiest kid in the world. You couldn’t help but love him.

Dad was reminiscing after I told him about our day. I took Dear Son out for a small walk and then after our walk, we sat outside for a bit. I tried massaging his left leg to help with his circulation. His left foot and calf are always swollen now and we’ve dubbed the left foot, his “brick foot”, due to it’s height. Massaging his leg is tough, because it’s so hard. It doesn’t move when you try to massage it. I gave him a short massage, then worked on moving both of his feet, moving his toes and doing just about anything to help him get some circulation going. I tried some leg extensions to stretch his muscles but everything was just so tight. I talked to him about moving his legs, but he couldn’t move them at all. Finally, I took the footrests off of the wheelchair and took a giant therapy ball and rolled it towards him trying to get him to kick the ball with either foot. It was windy outside and the wind move the ball more than he did. It was hard to tell if there was any movement at all in his feet, however I decided to err on his side and congratulated him for moving his feet. I worked on rolling the ball towards him and asking him to kick the ball. We did this a bunch of times and then I’d step back requiring him to kick it further. I kept teasing him that I hoped I wouldn’t have to run after the ball hoping he’s somehow give it a swift kick like the good ol’ days however that never happened. Typically, if I said something like that, he’d always respond and give the ball a swift kick.

My days feel a lot longer now. I feel as if I am in a race against time, where Dear Son is concerned. My goal is no longer on how to move forward but how to slow down the regression. Suddenly, I am working hard putting on his arm braces to slow down the contractures of his hands. I am working on trying to improve the circulation in his legs and feet. I am putting a pillow under his foot when he sleeps to ward off pressure sores. And when I finally lie down to sleep, I count the seconds between his breaths…one one thousand, two one thousand…six one thousand…then I ask him if he’s o.k., as if he can answer me. I listen some more but there is nothing…fifteen one thousand…and then I yell out, “breathe” hoping that he will hear my voice and suddenly breathe. I hear him take a breathe and then start counting again. Some nights, I am up every two hours to turn him over and other nights, he sleeps longer. I pay the price the next morning when I see a red spot on his foot. I know I have to get up and turn him over even if he doesn’t wake up. I can’t let him get a pressure sore.

So the days go on like this. It’s a lot to do now and some days, I am pretty exhausted. And apparently, so is Dear Son.

But there are also pockets of great joy in our days. Today, after four days, he finally gave me a kiss. He thinks it’s funny sometimes, to make me wait and count the days. Even his kisses have deteriorated. He used to take his tongue and lick my hand to give me a kiss. After a while, he couldn’t do that so he would take his head and hit my hand. It was more like a “head butt” but still it was cute. Now it’s barely a whimper. He can hardly move his head to touch my hand. It’s odd in many ways to watch his skills fade away. They kind of sneak up on you and when you finally notice, it seems like just yesterday when he could do “x” when in reality, it’s been years.

I often wonder though, what he’s thinking now. Just tonight he was lying in his bed, as I got his dinner meds. The windows and doors were open in our house and you could hear the children playing outside in the play area. They were noisy and loud and unlike other days, they stayed longer since it was unseasonably warm today. I wonder if he remembers what it was like at the daycare center, sitting in the dirt hole on a beautiful day, playing in the dirt with his face to the sun. I wonder if he misses that or if he wishes he could be outside with the kids, watching them play and hearing them laugh.

It’s interesting how people fade away. You think that one day they have the skill and the next day they won’t, but it doesn’t work that way. Instead, it’s a long, slow process. They lose their skills the same way they acquired them, little by little. I remember waiting for the day that he could walk in his walker. There is no specific day. Instead it comes gradually. It’s the same way now, he just kind of fades away.

But as his physical skills deteriorate, there is still one thing that he can do that brings him joy. He can hear and he listens. Today, he smiled as he heard me sing an old nursery rhyme to him. He loves to hear me sing and not only does it relax him but he smiles. On the days he goes to school, I sit in the rocker and he sits in the wheelchair as we wait for the school bus and he always seems to enjoy it when I tell him to listen for the birdies singing. He stops and listens and then smiles when he hears them sing. And on the days that it rains, I open the window in his bedroom so he can hear the rain coming down. And when the cat meows, he gets a big smile on his face because he knows the cat wants to give him a kiss. As I looked at my Dear Son today, I realized that he knew the secret to a good life. You can’t focus on what you don’t have, but take pleasure in the gifts you are given.

Note: Dear Son is 18 years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. He also has a progressive neurological disease.

Make a Wish Trip Approved~This is what he'll be doing!

Picture of Dear Son in the swimming pool at summer school a few years ago. His aide is holding him and his teacher is behind him.

In a few weeks, Dear Son will be doing this...swimming!

We took Dear Son to the neurologist today. While we were there, I told him that I'd like permission for Dear Son to go on his trip. I said that I didn't think Dear Son would get any better if we waited and there is a good chance that if he got sick again, he'd never be able to go. Also, with Dear Son's Scopolamine patch, he can't be out in the sun or he'll overheat so we need to go before it gets too hot in Florida. He agreed. I contacted our sponsors today and they'll be getting back to us soon. As you may recall, we'll be going to Disney World and staying at the Give the Kids the World Resort. We were scheduled to go last November to celebrate his 18th birthday however he got the swine flu one and viral pneumonia one week before we were scheduled to leave. Instead of celebrating his birthday in Florida, he was on life support in the ICU.

Prior to his hospitalization, we got a life vest for Dear Son so he could go swimming. You can see how relaxed he is in that photo however now that's he's grown, we needed to get him a proper life vest that wouldn't slip off. The life vest we got, was a bit challenging to get on so I had it altered a bit. In addition to zipping up the front, it also zips up the side. I had trouble getting his arm in the armhole of the vest, not because it was too small, but because Dear Son doesn't move very well and can't slip his arm into a vest like we would. To make it easier, I had a side zipper put in. Now I can lay him down, put the vest underneath him and zip it up on the side and the front without having to bend his arm. We plan on taking him swimming in Florida so he can relax.

I also asked permission for Dear Son to attend school one more day a week. He gave approval for him to attend up to 1/2 day, two days a week. I think we'll have to space it out a bit, say maybe a Tuesday and then Fridays. That would give him some recovery time in between.

All in all, a good day.

Update: The Make a Wish people contacted me today. They have already booked the hotel and are booking the flights.

Status Quo

This was a tablescape I made for lunch witha friend of mine. I built the tablescape around flower from Trader Joe's (love their flowers).

Sorry for the huge delay in posting. I just haven't had anything good to report where Dear Son is concerned and I've been a bit depressed about that.

Dear Son had a great week the week of the 8th. He seemed alert, more like his old self and overall, like he was improving. On that day, I had increased his feedings so we could take him to the doc and instead of feeding over 15 hours, I increased it so he was feeding over 7 hours. He did well all week and I had hoped that perhaps increasing the speed of his feeding, had made him a bit stronger. Since November, the rate of his feedings had been decreased to reduce the risk of aspiration. Now that he had been doing better, I increased it. I realize this isn't scientific however if Dear Son seems to do well, I run with it.

Last week, he seemed a lot weaker again. I was pretty depressed that he hasn't been bouncing back this time. Overall, it seems that it is taking a lot of energy for him to do basically nothing. When I move him to the recliner in the living room, just the fact that he's sitting up seems to exhaust him. For fun, Dad and I took him to a nearby mall, because Dad wanted to look at something and he thought we might want to get out of the house. We took Dear Son however he was really tired when we got home and the entire trip was only three hours. Then last Friday he went to school again, for the third Friday this month (he's only allowed to go 2.5 hours one day a week). He was tired and had a more difficult time than the week prior. They made Irish Soda Bread and he indicated to them he was tired from sitting in his wheelchair and wanted to lie down. They told him he'd have to sit there until the activity was finished. He was quiet after that but still, school isn't very long.

It's been a rough couple of months overall. Not seeing him improve coupled with not leaving the house more than once a week is tough. I am only working one day a week so I can care for him and without a wheelchair van, I don't get out at all. That, coupled with his lack of improvement has been depressing. I've also been worried about what might happen when he dies. It's going to be a very different life for me. My purpose in life and the joy of caring for him will end. It will be very hard to switch gears after spending all of my time helping him live. As a mother and a caregiver, it's a different bond when your child's entire existence hinges on your help. He needs his meds every six hours, he needs to be fed and changed. He needs to be rolled over at night so he doesn't get bed sores and he needs help with everything. I worry that although I'll go back to working full time, I think there is going to be a huge void, where Dear Son is concerned. I've tried to savor every moment with him but when you see him struggling so hard to exist, you can't help but think about what will happen when that time comes.

On a different note, I'd like to get back to my tablescaping again, but it's hard to do without time to myself. I like to make everything perfect and then take the photos and that takes a few hours to do that. I don't feel I can focus on that while I am attending to Dear Son. I have started inviting more friends over for lunch and creating my tablescapes for that so that has been fun. I did however order a slew of books from the library. I've been obsessed lately with these Victorian parlor chairs after seeing a gorgeous one with a heart shaped back on an antique site. I've also been interested in green cleaning and making my own non-toxic cleaning products so most of my books are related to those two topics. In terms of new things, I purchased a new sofa in earlier this year and it finally arrived earlier this month.

In addition, I was engulfed last week with reading anything and everything I could on the internet on BPA (Bisphenol A), a synthetic estrogen and plastic component, that is toxic. This toxic chemical is found in polycarbonate plastic, usually marked with a recycle code of 7 and also used to coat metal, so it's found in the lining of most canned food (including baby formula) and beverages. It can seep out of the polycarbonate plastic and into food and liquid, especially when the plastic is heated, worn or scratched or when in contact with fatty or acidic foods. I like to think of BPA like the high fructose corn syrup of the plastic industry in that it is everywhere however it far more dangerous. I'll let you do your own research and you won't have to look far. Everyone knows it's bad for you but yet, we still haven't banned it. I knew not to heat food in plastic in the microwave or to use saran wrap however I hadn't researched the issue enough to see just how bad it was.

Last week, I made the decision to remove just about everything plastic from my kitchen and created a 24 step action plan on all of the things I could do. One of the main things I'll do is to switch most of my dry goods and refrigerated items to glass containers or wide mouth mason jars. The issue with the mason jars was finding "BPA free" lids. I finally found a vendor that had that. As I researched further, just because something is BPA free does not mean it's safe. They can use other toxic chemicals and not identify them and just list a recycle code of "7" which is a mixed bag category. I still am looking for different spice containers, and once again, it's finding a BPA free lid that's a challenge. I've changed cutting boards and started using the wood and am purchasing some bamboo ones. I've been researching water bottles and learned that it's not enough to look for stainless steel but to look for "food grade" stainless steel. One good thing is that I don't eat many processed foods so I don't have to worry about the plastic containers they come in however there is just so many items to be concerned about. There is BPA in cans. While I don't use many, I use a few like soups or vegetables. I buy mostly fresh vegetables anyway so that won't be a big deal and I can purchase liquid soup in the boxes versus the cans. The Mini-Prep food processor I was using has a plastic work bowl. Well, the plastic isn't marked (Most of the time when plastic isn't marked with a recycle code at all, it almost always is a tip off that it's got BPA in it.) and I tried to order a replacement in glass only they don't have it in glass. Not only that, many of the work bowls from any brand is made with plastic that has BPA in it! Yikes! I haven't found solutions yet for my vitamin containers. I am working on eliminating all plastic bags however previously I would freeze cooked, chopped vegetables and store them in 1/2 cup serving sizes in freezer bags. I also would cook a turkey in the rotisserie and store that in 3 oz. bags in the freezer. I do some bulk cooking like that and am working on alternatives for food storage. I have seen some glass containers that can go in the freezer, the problem is making sure the lid is secure and it won't break. I still have to replace the dish drainer and plastic lids for the cat's food. Then there is cat food that comes in cans; I suppose those cans are lined with BPA as well. I've eliminated the plastic container for egg storage in the refrigerator and replaced that with glass. I haven't researched the plastic bags at the grocery store, the ones I put my fruit and vegetables in or any of the plastics that food is sold in. I used to store things like nuts and cheese in plastic containers in the refrigerator but I am changing those to glass. My big issue with glass was that it was heavy. In addition, when I went looking for glass containers, many had plastic lids! While I realize that not all plastic may be bad (those with codes of 2, 4 and 5 are supposed to be safe), other research showed that those plastics when heated in a microwave showed traces of BPA as well. Anchor Hocking has some nice glass bowls with glass lids although I'd like some different sizes. Most come in a 2 cup or 5 cup size. The Glad containers I was using were the 3 cup size and that was perfect for most of the items I stored in the refrigerator.

Some larger issues are that of plastics for Dear Son. It is my understand that there may be BPA in the plastic feeding bags, extension tubing, syringes, etc. I haven't begun to research that or to see if there are other options for that. On top of that, I was storing his daily feeding bag in a plastic container, his daily syringes in a plastic container and some of his liquid medications in a wide mouth plastic container. Worse yet, I was washing those plastic containers in the dishwasher once a week, so if there is BPA in them, it was getting in the dishwasher. I can change that to glass however all of his medications come in plastic containers from the pharmacy and many of those were unmarked or marked with a recycle code of 1. In addition, there is concern about BPA in all of the plastics used in the hospital, all of the "one time use" plastics for surgery and other procedures. I did go the website for his formula and they have not changed cans yet so I can assume the can lining has BPA in it.

In the end, I am only at the tip of the iceberg. My focus now is eliminating plastics with BPA or plastics period, from my kitchen. After that, I can worry about the rest of the house.

Tomorrow, we take Dear Son to see Ped Neuro Doc. I'll try to post more frequently but it's hard sometimes when Dear Son doesn't do a whole lot. Thank you for your kind e-mails and your concern.

Happy

Dear Son had a very good day today. Mornings are his best time and he woke up with a smile on his face. It was like old times. Dear Son has always been a naturally happy baby and then a happy young man. When he wasn't sick, he always woke up with a smile on his face. As he got older and much sicker, those times have been few and far between.

Normally, I give him a big hug and a million kisses when he wakes up the morning. As I kiss his neck, I tell him how much I love him and all kinds of stuff. I wrap his arm around my neck or sometimes just wrap my arms around him, depending on what he can do. While he doesn't reciprocate very well, lol, he does enjoy it. He just kind of lays there as if to say, "oh, Mom" but when I look at his face when I am done, he'll have a sparkle in his eye and will be smiling. That's on a good day and we haven't had a lot of those over the past few months.

I told him that Dad was coming over to give him a haircut and bath and that we were heading to the doctor. Normally, Dad does this on weekends however it was easier to do it all this morning. When Dad wheeled him out of the bedroom for his shave, he seemed genuinely happy. He was bright eyed, looking around, watching the cat and very in tune with what was going on.

Dad had a little fun with him and decided to shave the hair on the top of his head only and left the sides as if he were bald and told me to check it out. Of course, I said no and that he needed to shave it all. Dear Son thought that was funny since he likes when a little bit of chaos happens or something doesn't quite go as planned. Dear Son enjoyed the whole process.

We saw the GI doc later in the day and I asked him to check his stomach. Once Dad put him up on the examining table, Dear Son actually said "hi" to the doctor. He rarely talks and only has a handful of words but it is easiest to speak when he's on his back or side. In the old days, he always said "hi" when he got to school or when he would be around people.

Once the doctor left, the nurse started talking to him. She sat down and looked him in the eyes. She told him how good he looked and really seemed to connect with him. He was engaged with her and had a big smile on his face. He was looking at her with his big blue eyes and for a minute I could see the old Dear Son in there. His skin was beautiful and clear, his eyes were bright and overall, he looked really good. It was wonderful.

We stopped for an x-ray of his stomach after that and then came home. He fell asleep in the recliner and later I put him to bed. I stayed in the room to talk to him for a while and he worked hard to say, "Hi, Mom". Once he gets the "hi's" going, he'll keep saying it but today he kept trying to get the "mom" in too. It doesn't get much better than that.

He slept the rest of the day but all in all, it was his best day in a very long time. Dear Son is a wonderful young man and it was really nice to see him like his old self again today.

It was ironic too because as we were driving home, we passed by his old daycare center. Back then, he could walk on his knees and he loved being around the other kids but especially loved it when they would take the kids out to the grassy area behind the daycare center. Of all of the places for the kids to run and play, there was this one spot, a dirt hole, that he loved to play in. He would sit in this dirt hole and loved it. When I would pick him up after work, I'd come outside and once he'd see me, he'd take off on his knees in the other direction, out of the dirt hole and wait for me to come after him. I'd tease him and come up to him and wrap my arms around him. He loved it. As I passed the daycare center today, it reminded me of the old dirt hole. I had half an inkling to drive around back to see the old dirt hole and to talk to him about it, to see if he'd remember it. That's how I knew he was having a good day. Because it brought back the old memories with a fondness for the good 'old times rather than a memory of the good 'old days when he could do "x" and the sadness that follows. As we passed the daycare center, I couldn't help but get the picture of him out of my mind, sitting in the dirt hole with his turquoise t-shirt on, the sunshine radiating on his black hair and his clear blue eyes and Dear Son radiating the same joy right back at the sun. I guess that's why the Disney Make a Wish trip meant so much to me, because I wanted to see his face like I used to, all lit up with the sun shining down on him, just like the good 'old days. I never realized that until now.

As for me, I am slowly feeling better. We have another appointment tomorrow with the pulmonary doc.

P.S. If you haven't read the dirt hole story, you may want to read it now. It's probably one of my best stories.

Delay

I felt a lot worse today so I probably won't be posting for a few days.

Good News, Bad News, Please Pray

The good news is that Dear Son starts school tomorrow. He'll try it for 2.5 hours and he's excited. The bad news is that I got the stomach flu today. I called Dad to come help me from 9 to 4 today but I can't really do much. I had him get everything ready for tomorrow. Dear Son has not been to school since the Friday before Halloween, that's when he got the swine flu and had respiratory failure within 48 hours of contracting it.

Please pray he does not get sick. He can not clear his airways if he vomits and I am in no position myself to take him or even go to the ER. I've only stood up twice today, outside of going to the washroom. The flu or pneumonia is the worst thing he can get. And yes, he got the swine flu, seasonal flu and pneumonia vaccine six days before contracting the swine flu.

Thank you.

Update: As of today (Friday), I am starting to feel a bit better. Dear Son went to school and did well, according to his teacher. He was exhausted and slept the entire day when he got home. I think it may have been a bit much for him. We'll have to take it slow.

Dear Son Medical Update~Follow Up Appointment

Dear Son had his follow up appointment on Wednesday with his pediatric neurologist. He functions as Dear Son's primary physician as well, since he's considered medically complex. We discussed many issues, but the main ones were Dear Son's choking on his saliva, his inability to sit for very long and his inability to move his legs and feet.

As you may recall, Dear Son was on the Scopolamine patch to dry up his secretions and last month it was determined that the patch was causing urinary retention (so much so that his bladder was huge) and most likely was a source of his pain. As a result, the patch was removed and they recommended that we try a Scopolamine gel from a compound pharmacy however it was unsuccessful. As a result, Dear Son was put back on the patch and did not seem to have any issues with it. The crying that they had assumed was caused by urinary retention did not return. Ironically, the crying seemed to dissipate as well once the pneumatosis was gone; the CT scan on February 3rd confirmed this. Dear Son remains on the patch and the bulk of his crying is gone so I have to wonder if the pneumatosis was really the source of his pain.

Since the choking on his secretions was so bad, the neurologist spoke with the ENT regarding possible surgical intervention to remove the salivary glands. Of particular concern was whether or not Dear Son could handle the sedation (it causes respiratory depression and Dear Son can't clear his airways) and the surgery in general. Surgery is a huge risk for Dear Son because of the sedation and the risk of aspiration. In addition, I had concerns about the surgery because Dear Son's only means of communication right now is to cry out or moan when he needs to be changed. The surgery would make that harder.

The ENT seemed to feel that the surgery would be fine. The neurologist asked him about the extent of the pain from the surgery and the surgery in general. The ENT seemed to feel that even with Dear Son's issues, it was doable. The surgery is fairly involved so that doesn't mean it would be easy but he felt he could do it with minimal complications. I asked if they would recommend doing one side or both and they said they'd do both sides.

In addition to the secretions, Dear Son still had some pain when sitting in the recliner. I noticed that he had pain when I raised the footrest and screamed out when I lifted his leg to put foot cream on him. He has continued to have some pain when sitting in the recliner and can't seem to sit for more than one hour or one hour and fifteen minutes without fussing.

One other major concern that I had, was that Dear Son has not really been able to move his legs, his feet or his toes over the last three months. Typically, I do expect some deterioration after a hospital visit but this was quite pronounced since Dear Son's legs were always the most active part on him. He could swivel the recliner by moving his feet, he could rustle his legs in his bed and he could kick the wall if needed to let me know he needed to be changed (Dear Son has no language so he would yell out or kick the wall when he was in bed and needed changing.). He can't do any of that anymore. I did notice that he had maybe two or so times over the last three months where he moved them slightly, so I know they aren't paralyzed but overall, it's a significant difference. It's a concern as well when he's sleeping too since he does not move his legs at all once I turn him over. I must fully position his legs, his arms and his entire body otherwise Dear Son can't move at all. His inability to move further increases the possibility of bed sores or a skin breakdown however I am having to turn him over more and to date, he doesn't have any breakdown.

The neurologist checked his legs and noticed severe tightness. He also had concerns about Dear Son's spinal cord and recommended an MRI. An MRI of the spine can be dangerous for Dear Son due to the sedation necessary and typically spine MRI's are longer than a brain MRI. The neurologist felt it would be doable though since the brain MRI in January was successful and because he could request limited views. MRIs are typically done on an outpatient basis and my concern was that for the brain MRI, we had to convert Dear Son's seizure meds to an IV for the MRI, to prevent aspiration. (Also, they removed his Scopolamine patch and changed him over to Robinal, along with stopping all feeds prior. The side effects from the sedation caused low blood pressure and respiration which were resolved with a bolus of fluids but it takes a few hours until he's back to normal.) My concern was that this would be difficult to manage on an outpatient basis. The neurologist didn't feel however that the insurance would cover this procedure as an in-patient so we'd have to hold off until he was admitted again.

Other things I asked about was the Miralax. Dear Son became constipated once that was removed last month. As you may recall, they removed the Miralax and changed some of his medications to pill form since they had Sorbitol in them; medication, Sorbitol which was one of them, can be a cause of pneumatosis. When Dear Son became constipated, I attempted to give him prune juice, but did a google search and found out that prune juice had Sorbitol in it so I couldn't do it. When I called the neurologist, he put him back on the Miralax, but every other day. Since then, we haven't had any more issues and I wanted to know if it was o.k or if we needed to get another CT scan to check for a pneumatosis. He said we should be fine.

I had a few other issues to discuss with him but overall the neurologist felt that Dear Son had deteriorated significantly and that his disease is progressing. In light of that, he asked me what I wanted to do regarding the surgery and I said that I didn't want to drive that issue. We talked some more and I asked him if we were to do the surgery, is this something we need to do now or later and he felt if we did it, we should do it now since he won't be able to manage it later. He told me that there is a chance Dear Son would need to be intubated after the surgery and that the intubation could be quite lengthly. He explained that Dear Son will die of respiratory issues. I did not get the sense that he felt Dear Son would really make it through the surgery even though the ENT thought the surgery was doable. I also had some difficulty in doing a surgery so soon after we had been released. My gut tells me that Dear Son would not survive this surgery. I saw how hard it was in November for him to breathe and I can't imagine doing that again. In light of his respiratory issues, I suggested that we wait three months or so and then revisit this decision. That would give me time to get the therapy vest and a suction machine. (I have a low durable medical equipment limit and I needed to wait for the January hospitalization to be paid in order for this equipment to be covered at a higher percentage. Otherwise, it would go as the deductible and the secondary insurance doesn't cover respiratory conditions.) I need to order the vest and the suction machine regardless but if he did have surgey, then at least I would be prepared when we got home.

Overall, I don't think Dear Son is doing that great. While he's not crying much anymore, other than when he sits, he still is quite weak and sleeps most of the day. He moans when he sleeps at night and requires a small dose of Risperdal to help him sleep and an antihistamine to help further dry up secretions. I asked about the possibility of returning to school, since I wanted to help get his feet moving again and I think it would help his morale. School had stated that he couldn't return unless he could sit for 2.5 to 3 hours. I said that I don't know what Dear Son is capable of doing until we try it. He can sit briefly and could perhaps make it to school on the bus and if they lie him down once he gets there and alternates the sitting and lying down, it would be doable. Also, they could work on his legs in PT. He agreed to a few hours or half day once a week.

So in summary, he felt that Dear Son had deteriorated significantly. We agreed to revist surgery to remove the saliva glands in three months and we'll do an MRI as soon as we can. In the meantime, he can return to school. I contacted school and explained the situation to them and they agreed to try it. They are very excited to have him back and assured me that the classroom was all ready to go and they could manage him.

Dear Son will return to school next Friday, for a half a day or a few hours or so. I'll let them work out the times and once they get the bus scheduled, we should be good to go. They asked me what day of the week would work best and I said Friday because every Friday at school is, "Fun Friday" where they play color bingo, have music therapy and do fun stuff. At this point, that is what Dear Son needs the most. He needs some fun and to be around his friends again. I think going back to school will be a very tall order for Dear Son. I can't say that I think he's really ready although if we don't try to get him back, he'll never go back again. I really think we need to try to get some functional movement again, if possible.

And finally, we discussed the Make a Wish trip. Dear Son can't go until he can sit up and sustain the plane ride and getting to the airport. We need to see how school goes and if he can get through that, then we can re-evaluate whether or not the trip is doable. If he can't get through that, I don't suppose he'll ever be able to make it. I think I already know that but I suspect we'll know more in a month.

Dear Son~School Visit

As you may or may not know, Dear Son has not been able to go to school since he got the swine flu/viral pneumonia in November. Although he has recovered from those, he is still not able to sit up very long and he is unable to clear his airways; since he can't clear his airways, he is not allowed to return to school until cold/flu season is over since if he got sick, he might never recover. His last day of school was at the end of October. In the meantime, we got a visit from his teacher and his aide (CNA). She brought him a little scrapbook they made at school to show him what they have been doing. He really enjoyed it!


He also enjoyed visiting with his aide, although I didn't get a picture of her. I didn't realize I didn't take it until later! Dear Son was having such a good time with his teacher that I couldn't help but take out my camera.

During her visit, we talked about going back to school, maybe starting with some home visits and then a trial visit to school. Today, I received notice that they will require him to be able to sit up 2.5 to 3 hours at a time. Currently, Dear Son can't sit for more than an hour without being in pain so we are a long way away. We really need to get him back in school, not only for his mental well being (He is happiest when he is around other people.) but to help him move his feet and legs again. Prior to the November hospitalization, he could move his feet and legs in his bed, he could move his feet to swivel the recliner and move his toes. Now, he can't move his feet, legs or even his toes on his own. (This is problematic, since I need to keep moving him so he doesn't get pressure sores.) His only means of communication now, is a moan, or if I ask him if he wants to turn over in his bed, he'll move his shoulder slightly to let me know he wants to be turned. In addition, prior to the hospitalization, when I turned him over in his bed, he could move his arm for me; now when I go to turn him, I have to move his hips and then move his arm. I am hoping the physical therapist can help him with that to make it easier for him and for me.

After she left, she followed up with a video of Dear Son at school last year, however blogger couldn't process it. I tried last night for a while and today as well however blogger has known issues with video processing; for some reason it hangs in the processing mode. If anyone has a work around, I'd love to hear it.

We follow up with the neurologist next week.

War and Peace

Some days you can’t help but think, when the ax might fall. It’s times like these, when I am alone at home, and Dad has Dear Son, that I think about that. Times like this when I have time to paint my nails and not worry that I’ll ruin them if I’ll have to change a diaper. Times when I can do whatever I want, because there is no one to care for. You revel in the solitude, the peace and the quiet, but are careful not to enjoy it too much for fear it could be permanent. A little dose here or there, is a luxury, but permanent silence would be deafening.

I don’t suppose we give much thought to when someone might die but this isn’t a normal situation. We have a child who we know has been very, very sick and it’s only a matter of time before we lose the war, even if we’ve won the last battle. War changes you over time. You can no longer imagine time alone when you’ve been in every battle together. I’ve sat at his every bedside, wiped his little brow and doted over his every breath. When you are together at the hospital, you wait for the time when you can get out and go home. As you imagine the end of the battle, you can’t help but be swept away by thoughts of the war and when your real life will begin. Instead, your life is always a catch 22, where you eagerly await the time when you can begin your life, once the war is over, only to lose your best friend in the battle and have nothing to return home too.

It’s tough sometimes too, when people die, especially after a long battle. It doesn’t matter if you know them or not, just hearing their story on the news, whether it’s a celebrity, a politician or just a random local news story can evoke a reaction. The bigger the figure, the more you are affected. You can’t help but be affected because you know deep down, that your own war is nearing the end, and when someone else dies, you imagine your own battle and how it will end. And when they die, you feel like you’ve somehow dodged a bullet, because you know your end is coming. The tears you cry for them, often catch you by surprise, but your tears are never really for them, they are for you. They are yours because you realize just how close you are to the end of your own war. When that happens, you can’t help but hug and kiss your child, as if they had run out into the street and dodged a speeding car. It’s as if doing this somehow, prevents the end to your own war.

It’s strange too, when you’ve been in the trenches together. There is peace in the battle, knowing that you are together, even if only in the same room. That is where the battles are won, even if only briefly. It’s there that they tend to the wounds of the battle only to release him to find out that the battle isn’t really over, it’s just that the location has changed. You leave the battle as scarred as they do, only your wounds are inside. Whatever physical scars they have from the battle, have been internalized by you. It’s like watching a war in 3-D, somehow you feel you’ve been in it too.

During the war though, you learn to value the soul. The battle scars or bucket of parts is sometimes just that, a bucket of parts, some of which still work and others, not working so great. At some point, you stop worrying about the physical skills and what they could do and focus instead on the person within, for therein lies their soul. That is the person you know and love. It matters not what they can and can’t do because you love them regardless. Over the years, you cherish the child they were and the man that have become. War does that to people. You learn that the time you spent together was not just for him, but for you too. Their battle was your battle and you never look at any war the same way after that without being affected. As you get near the end of the war, you realize that the life you imagined after the battle, may never live up to the war.

And those times of solitude, can be a grim reminder of what is to come. I am always careful not to enjoy them too much. And when the time comes, when Dad brings Dear Son back home, and the front door opens and I see his shining face, I make sure to kiss and hug him really good. I am thankful for the opportunity to care for him once again. Once again, the battle rages on. It’s a good kind of battle though, because it means the war hasn’t ended. And as his mother, I'll do what I can to fight until the very end. After all, I have my little buddy to take care of…and that’s a very good thing.

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. In addition, he suffers from a progressive neurological disease.