Christmas 2012

We had a nice Christmas.  We went over to Dear Son's paternal Grandma's for Christmas.  She had the entire immediate family there including all of the grandkids and great grandkids. Grandma is 91 now, and reminds us of that every day. 

She ordered some pies from Baker's Square and then forgot which location she ordered them from so they had to call to verify the location prior to picking them up, lol.

She's had it at her house for so many years although she has it catered now instead of cooking everything.  There are other family members that bring the turkey and a ton of desserts. Dear Son's Aunt is an amazing baker and makes a ton of different cookies and other Christmas treats that are not only delicious but beautiful.

The great grandkids where there too.  One of the them got a new hat and she was glad to model it for me and put her hands up so I could take the picture. She is a real cutie.  She ran up and threw her arms around her Great Grandma the minute she came into the house.  She got a huge pink dollhouse for Christmas that had an elevator.  When I asked her what her favorite gift was, she said "a Barbie".  I hope Santa didn't hear that after bringing that huge dollhouse.

Dear Son got a new winter hat from his Dad.  I just loved how his face lit up when his Dad was opening up the present for him. I quickly grabbed my phone to take some pictures.  Dear Son has never been able to open any presents since his hands don't work and he can't grab anything. When he was a baby, I used to wrap everything then unwrap it all to open it. I got smarter as the years went on and switched to gift bags to save myself some time.  Dear Son got some new pants, new pj/lounging pants, new hat, shirts, carousel and money. I didn't decorate our apartment for Christmas this year.  I had stored our Christmas decorations at Dad's and he forgot to bring them over and then it got too late. I decided that since we'll be moving in a few months that I'd skip the decorations this year.  One thing that was really cute though, was that Dear Son was awake nearly the whole night pror to Christmas Day in anticipation of Santa.  He was so excited to open presents.

In other news, December 20th marked the one year anniversary of Dear Son's real food blenderized diet. As you may recall, Dear Son eats via a feeding tube and last year I got rid of the formula and switched him over to a real food blenderized diet. He's doing great on this new diet.  We went to the doctor two weeks ago and he lost more weight. 

 

• Dear Son has now lost 18.6 pounds since I changed his diet. That's great for someone who is essentially an invalid and doesn't move much.
• His cognitive skills are much better. Both his brain and his body work so much better now.  He is now able to communicate with eye blinks in response to yes/no questions. On the Friday before vacation, he has a blast at school because the kids in his class came up to talk to him and ask him questions. He responded with eye blinks and then that kid told another one and soon they all came up to talk to him and ask him questions. Dear Son was positively glowing when his nursing aide told me all of this after school.  In twenty one years, Dear Son has never been able to do this so it's really wonderful.
• His body works better. His dystonia (movement disorder that makes it hard to move since your body is contracted and doesn't relax) is much improved. I can lift up his arm and he no longer has any resistance. I tease him and say his arms, "move like buttah" and he smiles every time.
• His acne improved significantly. He went from bad acne to mild and nearly clear skin.
• He's never sick now even though kids/teachers at school get sick. Some of them got the colds/flu but not Dear Son. How cool is that? He used to be the first one sick and now that he's on a real food diet plus the Now Foods Organic Virgin Coconut Oil, he's been pneumonia free for over two years now and has not had any hospitalizations for pneumonia.
• He looks healthy!

I am also giving myself some credit. This is a huge committment on my part. I make nearly all of his foods. In the past year, all of the bread has been homemade, all of his protein sources are organic, he gets eleven servings of fruits/vegetables a day (some organic, some regular), omega 3's and probiotics. This means that when I get tired, I can't go through a drive through or put a frozen pizza in the oven for him. I've made everything from scratch for him for one year. There were only three times in the past year that I have him formula instead of making him real food.  All of his meals take two hours to administer since he gets four cups of blended food/water per meal and he gets one cup of blended food every thirty minutes. I wouldn't trade these results for the world though. It's also really easy to put together since I use an exchange type system. It is a ton of cooking though.

 

One benefit of his blenderized diet was at an office visit. We went to his wheelchair check up recently after getting some new parts. The wheelchair vendor, who's fitted all Dear Son's wheelchairs since he was three, couldn't figure out what was different. When I mentioned his acne was improved, he exclaimed, "That's what different! I thought Dear Son had just come back from vacation because he looked so good!" He went on and said he was amazed at the change.

 

Overall, it's been a great year. But the best is when I see his happy face.  You can tell that he not only looks healthy now but he feels great.  Here is another picture of Dear Son with his new hat that he got for Christmas, posing with his Dad. I like this picture since you can see how good Dear Son looks and because you can see how much his Dad loves him.

 

I'd also like to thank all of my readers for your continued support and comments. It's so nice to have people interested in Dear Son.  Wishing you all some rest and happy holidays.

Making a List and Checking It Twice... The Importance of Having a Pre-Op and Post-Op Plan

After Dear Son's recent surgery, I made a list of things that made it successful this time. One thing I noticed was that while I had a great pre-op plan, I really didn't have a post-op plan. I was so worried about getting through the surgery that I totally forgot about it. I realized this last week when he was starting to cough and had some breathing issues. I was able to turn things around by increasing the Now Foods Organic Virgin Coconut Oil and increasing his nebulizer (breathing) treatments. I realized then that I needed to have a better post op plan and that I needed to document it for future surgeries.

 

Prior to his surgery, I focused on keeping him well and making sure he was as healthy as could be before the surgery. Typically, his diet can range from 30-75% organic per week and prior to the surgery, I made certain to increase that to 75% or more. I made sure all of his fruit was organic so that he'd have as many antioxidants and as few toxins as possible. While normally, he gets 1 tbsp of Now Foods Organic Virgin Coconut Oil to prevent pneumonia, I gave him 2 tbsp/day. I gave him a breathing treatment the morning of the surgery, the first treatment he had since May of this year since he really didn't need them anymore.

 

For post-op, I realize that I needed to do a few things:

• Increases Miralax to twice a day for the first 10 days after surgery.  Since Dear Son couldn't be repositioned much in bed due to his incision, he wasn't moving around as much making it more difficult to have a bowel movement. In addition, the anesthesia made him more constipated so he needs additional help. He was constipated for 9 days after the surgery and is now back to normal.
• For the coconut oil, I'll increase it to twice a day for the first week, then cut back to once a day for the second week but give him 2 tbsp. For the third week, he can go back to 1 tbsp/day. This way, it will keep him from getting any pneumonia, when he can't be moved as much. The additional coconut oil will also help him overcome the constipation from the surgery.
• I think he benefits from nebulizer treatments for a while after surgery. I'll do 2 treatments/day week one and then go down to 1 treatment a day for the next week or so and then off the treatments.
• I'll use the Scopolamine patch to dry  up secretions, if they get too intense. On Friday, I noticed he was choking on his secretions and coughing a lot. I put the patch on for one day and it dried up secretions enough that he could rest comfortably. Less secretions means that he has less chance of aspiration.
• Chest pt-I was doing some chest pt after the surgery so I would just make certain to do it a few times a day, every day to keep his lungs clear.

Since Dear Son is medically fragile and since he needs this Vagus Nerve Stimulator to control seizures, I know that I need to have a great pre and post surgical plan in place for any future surgeries. I feel confident now that I have a good plan in place for the future.

 

Dear Son is doing much better than he was a week ago. His bowels are moving daily, he looks good and I continue to give him one nebulizer treatment a day. He smiles when he sees me get it out so I know it helps him.I suspect I can stop that in another week or so. 

 

My goal is to keep him the best he can be. It's been wonderful this year to see him improve so much with this blenderized diet. He is so much better cognitively and it's working great on every level. It's also been a lot of fun seeing him enjoy life so much and for the first time in umpteen years, it seems like things were easier for him to be him.   As a mother, all you ever really want for your kids is to see them happy. For a kid like Dear Son, keeping him well and keeping him healthy requires constant diligence since even minor slip ups can have a huge impact on him.

Tomorrow he goes back to school so it should be an exciting day. He is really looking forward to it and I feel confident that he is ready.

Medical Update: Gliches

Things seemed to go well for the surgery.  After the surgery, it took around 12 hours or so for his respirations to increase and to start getting back to normal. I felt pretty good about everything for a while however on Friday, the day after Thanksgiving, I noticed his breathing was starting to sound a bit loud. He was coughing more, or trying to cough. He was wretching a bit and he sounded pretty noisy. Anyway, I gave him a nebulizer (breathing) treatment and it seemed to help. His oxygen saturation level improved and went from 90 to 94. Due to the surgery, he's only been able to lie on his right side so the concern was that perhaps a right lung pneumonia might be starting. I have been turning him on his left side for short periods however his lungs sound so bad that I worry he can't breathe so I end up turning him back over within an hour or so. I also make sure I am totally awake when I do that since I worry he'll choke on his own secretions since he can't roll over on his own. Dear Son had been sleeping more and more and things didn't seem quite right. In addition, he hadn't been urinating  as much or having bowel movements as often. I started doing nebulizer treatments once a day, increased his Miralax to twice a day,  and did some chest pt. 

 

Around 1 a.m. or so this morning, I gave him his seizure medications (he gets them every six hours) and he sounded poor.I also gave him an additional dose of the Now Foods Organic Coconut Oil in case he's coming down with pneumonia. He's at high risk for pneumonia after the surgery.  I did some chest pt and gave him a nebulizer treatment at 2 a.m. and he sounds much better. His oxygen saturation was 93 after the treatment and he is breathing much, much better and he's stopped coughing.

 

I'll probably call the doctor tomorrow. I wonder if the anesthesia made it harder for him to have a bowel movement and I'd like some clarity on the lungs. I am not sure if I need to be doing anything else for him at this time. Our clinic visit is in a little less than 2 weeks and we should be able to get the settings on his Vagus Nerve Stimulator increased at that time so that should help these smaller seizures. Overall, I still think things are o.k. however I am a little concerned that this noisy breathing is not going away.

Happy Thanksgiving

Today I am most thankful that Dear Son made it through his surgery. This photo was from the hospital. He's doing pretty good...we're home and he's happy. I am still a little afraid to turn him on his left side since that is where the incision is but I am able to sit him up in the Lazy Boy swivel chair by using the hoyer lift. He enjoyed sitting there and listening to his music with his headphones.

 

Also, it's been 11 months since I started him on his blenderized diet made from real food.  That means that for the first time in 8 years, he was able to have a full Thanksgiving meal. It was blended up in the Blendtec of course and given through his feeding tube but it was still nice that he could smell the food and have some turkey.

 

In looking back on the surgery, I think they did a few things that made it successful for Dear Son this time. I think have an anesthesiologist that was board certified in anesthesia and critical care helped. They were able to use a shorter acting sedation which lessened the respiratory depression. Second, because they were aware of his risks of respiratory depression, they were able to put the breathing tube in differently this time (last time they didn't use it at all). Also, there were two other things that helped. We used the scopolamine patch, a patch that dries up his saliva.  I think this helped a lot because it took about 12 hours after he got out of surgery before his respirations increased to a more normal range.  I doubt he could have coughed very well to clear up the saliva prior to that and if he couldn't cough, he would have been at higher risk for aspirating the secretions into his lungs. And finally, anesthesia recommended that he have a nebulizer treatment with albuteral the morning of the surgery and prior to his surgery to open his bronchial airways. I gave him a treatment at 8:30 a.m. the morning of the surgery. His surgery was scheduled for 12:30 p.m. and it was started around 2:45 p.m.and they finished in a little over 2 hours or so if I recall. I think all of these things helped.

 

 

 

This picture was taken on Wednesday, the day after the surgery. You can see he's pretty happy. He is still having some breakthrough seizures however. When they turn the device on, they start him on a lower setting and work up to his previous setting. Currently, the device cycles on every 3 minutes and the last one cycled every 20 seconds. We'll see if he can make it to his follow up visit.

 

He looks pretty good now. All in all, a lot to be thankful for!

Surgery Update

We just got home 1/2 hour ago. The surgery went really well and there weren't any complications. I am so relieved. He looks good, but a little tired as expected. They put in a larger device that should have a longer battery life. 

THANK YOU so much for all of your comments and emails. I appreciate all of your prayers and wishes for Dear Son. I was so nervous this time and that is unusual for me. I am relieved to have this behind us.

I'll write more later after I get some sleep. I've been up all night and am very tired. I have to work tomorrow as well plus shop for Thanksgiving.

Have a wonderful holiday.

Dear Son's VNS Surgery-Meeting with Anesthesia

The meeting with Anesthesia went well on Friday.  We discussed Dear Son’s past surgical history and mapped out a plan for tomorrow.  Prior to meeting with the Attending Physician (Clinical Associate), I met with the “senior” resident. That drives me crazy quite frankly however because we go to a Big Academic Medical Center, they make you meet with the resident first.  I guess it’s not stressful for me enough to have to go through this surgery and to go back through my notes and rehash all of it to prepare for the meeting. Then I have to go through it with the resident AND again with the Attending Physician.

As I mentioned before, Dear Son is a high risk for respiratory depression and aspiration, meaning he has trouble breathing over the anesthesia and the airway can collapse. This is why the physicians ruled out any further surgeries after 2009. In addition, Dear Son has trouble normally managing his saliva. For that reason, he can never sleep on his back and must be side lying at all times. He only lasts two hours on his left side before he starts choking so I make sure to turn him at the two hour mark or as soon as I hear him gurgling. I typically prop him on his side at night and since Dear Son can’t roll over on his own, I turn him. If he were to be on his back and choking, he couldn’t turn himself over to help himself.

Anyway, it went well until he states that due to Dear Son’s extremely high surgical risk, that they may have to do the intubation (insertion of the breathing tube) while Dear Son is awake! He states that the administration of anesthesia prior to getting the tube in place can cause the airway to collapse hence doing it when he was awake. This is the point in the exam where the residents fail me. They come up with these ideas that they wouldn’t want done to them and that they have no problem recommending for someone else.  I told him it wouldn’t be done. I wouldn’t do it for myself and it won’t be done for Dear Son. Can you imagine someone placing a breathing tube in your mouth while you are awake? Now can you imagine someone inserting a breathing tube while you are on your back, choking AND you can’t roll over to help yourself or speak or push them away with your hands to stop?  I can’t either, that’s why it won’t be done. Anyway, I explained that Dear Son has an easy gag reflex and that if they tried to do it while he was awake, he would definitely aspirate so that the risk of aspiration was 100%.  I said previously people tried deep suctioning (where they insert a tube down to your lungs to suck out the fluid) and that in every case, Dear Son gagged, choked an aspirated. After I explained this to him and he kept trying to build his case, I simply stated that he needed to get the attending because I wasn’t going to agree. He did. We didn’t argue or anything and overall he was fine, it was just a case where the residents think more in terms of solving a problem than they do with the practical applications of things.

The Attending Physician came in and she was very nice. She agreed it wasn’t the right solution and said it wouldn’t be done. She said it’s not very successful in disabled patients anyway. We went on to have a nice discussion of the entire procedure. Granted, it’s really high risk.  As in enormously high risk.  She had read through the Anesthesia notes from August of this year when I had met with Anesthesia to discuss the possibility of throat surgery. The surgery was nixed due to the high risk. We talked about the previous surgery for the replacement of Dear Son’s Vagus Nerve Stimulator and the drugs used and what happened. I  had reviewed my notes previously from this surgery and gave her the highlights. Like I mentioned, there were problems however when I went through the issues with the surgery, I am careful not to use any names. My goal is for a great outcome tomorrow; I am not trying to ruffle any feathers. Since they won’t be using Propofol, they’ll use a technique called, “Rapid Sequence Intubation” to insert the breathing tube. Essentially, they administer anesthesia and a paralyzing medicine quickly, then insert the breathing tube quickly. Once it’s in, Dear Son should be o.k. The risk to the procedure is if his airway collapses from the anesthesia PRIOR to the insertion of the breathing tube. She asked me if any of the doctors had difficulty in inserting the breathing tube in past surgeries. I said I wasn’t sure however he had been intubated previously (on a ventilator) and that I didn’t recall that. She said if those insertions were successful previously, then the odds were things would be o.k. A lot depends on how Dear Son can manage this.  We also discussed using a Scopolamine patch to dry up Dear Son’s secretions. We had previously used this patch however it caused seizures for him. I did notice it doesn’t cause seizures until the 12-20 hour mark but is really effective in drying up secretions. We agreed to put the patch on 6 hours prior to surgery ; this should help prevent some aspiration since there would be less secretions to swallow or aspirate. Other drying agents weren’t effective for Dear Son.

We discussed the surgery and mapped out a plan for tomorrow:

·        Dear Son will get an IV in the pre-surgery room. We haven’t had issues with an IV previously so that is good.

·        They’ll keep him on his side so he doesn’t choke. They’ll keep him like this up until they intubate him.

·        Due to his high surgical risk, they’ll most likely use an Anesthesiologist that is double board certified in Anesthesia and Critical Care (ICU) versus one that is certified in just Anesthesia. (The good news here is that most of the ICU staff is familiar with Dear Son and also we see the Section Chief of Pediatric Pulmonary in clinic so she is very familiar with him should there be any issues tomorrow.)

·        They’ll give him IV meds to put him to sleep.

·        Next, they’ll do the Rapid Sequence Intubation. He’ll probably need to be on his back by that time for that but the surgery can be done on Dear Son's side. It’s actually on a good side for Dear Son and he doesn’t choke as much on this side. Once the breathing tube is inserted, they’ll put him on a ventilator for the surgery. The ventilator breathes for him in case he can’t breathe on his own (respiratory depression is averted since the ventilator breathes for him).

·        The surgery is performed.

·        Once the surgery is done, they’ll shut off the anesthesia gasses. They’ll measure the gasses on his exhalations which will tell them how much of the anesthesia is left. They are using a short acting anesthesia for him. Once they no longer have any anesthesia present in the exhalted breaths, they’ll remove hm from the ventilator.

·        The breathing tube may or may not be removed right after the surgery. It depends on how he does. I expected this. They think they can remove it right away but we’ll see.

·        He’ll stay in the hospital overnight to make sure everything is fine.

Overall, the meeting with anesthesia went well. So the nerve racking portion will be getting the tube in.  After I came home from the meeting, I recalled an episode at the local hospital many years ago where they administered seizure medicine (Dear Son was taken to the ER for seizures.) without protecting the airway and his airway collapsed and they had a code blue. This was while we were waiting for the helicopter to arrive to take him to Big Academic Medical Center.

Anyway, last night I thought I’d send an email to two of the ICU docs that have treated Dear Son previously. If I recall, one of them was present when he had respiratory failure in 2009 when he had the swine flu the day before his Make a Wish Trip. The other doctor was there to remove the tube and I couldn’t recall if she had but a breathing tube in his for a different time when he was on a ventilator. I sent an email to them both with a quick question to see if they recalled having any difficulty inserting the breathing tube in Dear Son. I wasn’t sure if I’d hear back. With all of the time we had spent in the ICU over the past years, I have come to know most of them pretty well and they certainly know Dear Son.

Luckily, one of them responded this morning and even took the time to look up the medical records from 2009 (I sent her his medical record number in the email, lol.). She provided me with the drugs they used to intubate him and also told me she didn’t have any issues getting the breathing tube in. I think that is good news. I’ll be able to provide the Anesthesiologist with this information tomorrow. And because it was all done at Big Academic Medical Center, they’ll know the docs involved.

Thank you for all of your prayers for tomorrow. I am still nervous but I think I’ve done everything I can to help it be successful tomorrow. I just heard back from the other ICU doc and she mentioned that she didn’t recall any issues with intubation so that certainly helps. I am also glad we are able to get this done right away-Dear Son is having more seizures now that the battery is low. He's crying out in his sleep and during the day; when I look at him, his hands are shaking.

Dear Son Surgery Scheduled

As I mentioned previously, Dear Son has a Vagus Nerve Stimulator (VNS) implanted to control seizures. Over the past month or so, his seizures began increasing and it was discovered that the battery was low and needed to be replaced.  Since the VNS is located internally, he'll need surgery to replace it.  The VNS is located beneath his left arm.

 

On Monday, Dear Son is scheduled for surgery at Big Academic Medical Center. I am a bit nervous to say the least.  He initially got the VNS in 2004 and when the battery went low in May of 2009, we had it replaced. Unfortunately, a decision was made to use heavy sedation vs. general anesthesia and when they did that, Dear Son was unable to breathe over the sedation (this is called respiratory depression). He developed a mucous plug and his lung collapsed.  You can read about it here. Once his lung collapsed, he developed an infection and eventually both lungs became filled with fluid with his left lung being totally filled with fluid and his right lung at 75%. He was in the ICU for 10 days and was hospitalized for nearly three weeks.

 



After that, I contacted the Make a Wish organization to schedule his Make a Wish Trip.  I worked with them and we set it up for his 18th birthday.  The night before we were scheduled to leave for the trip, Dear Son got the swine flu and a viral pneumonia. You can read about that here. He had respiratory failure and was placed on a ventilator for several weeks. He eventually recovered but all in all, it was a horrible year. Having this VNS surgery brings back all of these horrible memories. It's really hard. He's had some 70 plus hospitalizations in his life and to be honest, 2009 was the hardest ever and it's not easy to go back.

 

Tomorrow we meet with anesthesia.  It's my understanding they'll use a breathing tube this time and they'll place him on a ventilator while they do the surgery. If all goes well, they'll remove the tube after surgery and he'll stay there overnight (I always stay with him:) and we'll go home on Tuesday.  He'll be out of school for a few weeks until the incision heals.  We just can't be pulling on the incision and since he's not able to roll over, etc. on his own, it will make it difficult to move him around for a few weeks.

 

Anyway, I'd appreciate your prayers. I am trying to be optimistic that things will go well this time and I hope things go well tomorrow with anesthesia. I am going in with the attitude that everything will go well however it's a little hard not to look back. Dear Son is medically fragile and his biggest risks are respiratory depression and aspiration (aspirating his own secretions). After everything happened in 2009, I was told that he could not have any surgery of any kind since they didn't think he could make it. Unfortunately, Dear Son needs this Vagus Nerve Stimulator to control the seizures. I think the good news is that Dear Son has been hospital free from pneumonia for over 2 years now since I've been using Now Foods Organic Virgin Coconut Oil to prevent pneumonia. In addition, I've been able to build his immune system through converting him to a blenderized diet of real food. Overall, this is probably the healthiest he's been in years although he still is medically fragile and an extremely high surgical risk.

 

I'll try to post on Tuesday to give you an update, when we get home. I am hoping things go well. If it does, I'll have a lot to be thankful for on Thanksgiving.

 

Note: Dear Son is a 21 year old man who was born with intractable seizures, dystonia and is severely developmentally delayed due to a random mutation of the ARX gene. He was one of the first boys in the world to be discovered with this genetic mutation. His seizures are controlled with multiple medications and a Vagus Nerve Stimulator. He is a delightful and happy young man who lives each day joyfully; I am blessed to have him as my son.

Liberace Wheelchair Halloween Costume 2012

 

 

Things were a bit of a bust this year for Halloween. As I mentioned previously, I had planned this costume for last year however they did not allow Halloween costumes at school due to religious reasons. This year, still no party but they said the kids could dress up if they wanted.  Of course, I decided Dear Son would dress up!

 

I decided on the Liberace costume after seeing a photo on the internet of a piano.  I wanted a costume where I could utilize his wheelchair and I wanted a costume that incorporated sitting in it. Once I decided on a piano, since he'd be sitting, I brainstormed on the most flamboyant costume or character that would play the piano and that's where I came up with Liberace. It's easier to create a costume with a character that is "over the top" than say, just a standard paino player.

 

Unfortunately, Dear Son began having more seizures the last week. I was called to school yesterday for an emergency since he was seizing. I am guessing his Vagus Nerve Stimulator's battery is low; that is the device that is implanted to control seizures. I spoke with the doctor this weekend and yesterday and we will be going to the doctor on Friday so he can check the settings on the device (they have handheld software that they put near the implanted device and it gives the current settings and battery life). As a result, I couldn't send Dear Son to school since I knew he was having seizures. So, he didn't get to wear the costume anywhere:(

 

I decided to dress him up today and get some pictures at the clubhouse at our apartment complex. I called a friend of mine to help me out. We live on a golf course and the clubhouse is nicely decorated for fall so I thought it would make for some great pictures. Unfortunately, Dear Son had some seizures today so he didn't smile at all and he closed his eyes for most of the photos. 

 

Moving on, here he is in his Liberace wig. I purchased an Elvis wig and then put some red blush on his cheeks to ramp up the costume.



 

 

 

Here is the completed costume: a piano with a chandelier.  Liberace was known for his "over the top" costumes that were luxurious and attention getting. He was known as much for his costumes as he was for his talent.

Here is a nice photo of the piano I made. I added fur boas to his wrists and added some rings for bling!

Here he is as Liberace. I think he looks more like a young George Washington, lol.

Here are the rings, which I found at Walmart for only $5 that I thought would be great. I actually love this floral one!

 Here I am with Dear Son. It's sad that he's not feeling well with these seizures.

Here is a photo of the back of the piano with Liberace name on it. I used silver glitter stick on initials for this. There were some pumpkins at the clubhouse so I added those to the top of the piano to add some color.

 

Here are the rings! Liberace often wore rings on every finger!

 

Now, for the details and a mini tutorial.  To create this costume I had a few obstacles: I had a wheelchair but also, it's hard to get a button down shirt on Dear Son with his disabilities. As a result, I need to find a way to make the costume formal without resorting to a tuxedo or velvet dinner jacket. Here are some photos of Liberace that I used for inspiration. Notice the chandelier on the piano.

 

 

 

 

I chose these photos because they had fur, or a cape and a broach, which I thought I'd use for Dear Son's costume. Notice the chandelier on the piano.

Notice the rings.

From there, I decided to get my supplies. First, I order the wig. Since there weren't any Liberace wig, I ordered an Elvis wig and cut off the sideburns.

Here's my Liberace with the Elvis wig...

 

Next, I purchased some supplies: wig, boas, a cape, chandelier, foam for the piano keys and glitter ribbon for the piano keys.

 

I used a store bought cape and added a fur boa to the collar and then stapled two black boas down the front to add opulence.

 

For the costume, I used a broach to attach the collar. I decided to use a simple white turtleneck since that's easier to get on Dear Son with his disabilities.

 

Next, I worked on the piano. I attempted to find a box that was wide enough however most were too tall. I was at Michael's and noticed some styrofoam sheets but when I return to purchase them, they were sold out. Instead, I purchased some floral foam that was 36 inches wide, 12 inches deep and about 4 inches tall. It was perfect. I also purchased a display board in black, the three sided type that kids use for science projects and such. I like using those boards since they are pre-painted and it eliminated a step. I didn't take pics of the this mainly because I was called to school for an emergency while I was making it, so I didn't take pics.

 

I think the keyboard turned out great. I cut the black display board and glued it to the floral foam. I cut a larger piece for the bottom so that I could glue the white foam to the cardboard to make the keyboard. Once I cut and glued the white foam on, I simply drew keys on the white foam. I used the black glitter ribbon that I used for the keys to measure the width of the keys.  Next, I used the black glitter tape and cut some black keys, then stuck them on the piano keyboard. I purchased some gold letters at Walmart and stuck them on to create the "Baldwin" logo.

 

 

I needed to fill in the seams and originally, I planned on using some silver Christmas garland to fill in the seams however it would stick so I used the black glitter tape and added that. It's very hard to photograph since it sparkles so much but in person, it's awesome. It looks like a tuxedo stripe with glitter. I wish I had purchased more glitter tape to finish off some of the seams however I couldn't get to the store so I just made do.

 

 Another closeup of the sides.

 On the back of the piano, I used some silver stick on letters to spell Liberace. I tried to space them evenly however they fell off one by one and when I glued them back on, the spacing seemed to suffer a bit, lol.

 Here is a photo of the piano that I made sitting on the table at the clubhouse. I thought it showed up better here. I added a black glitter crow and chandelier.  The little pumpkins were from the clubhouse but they added some nice color so I used them.

 I think the "Baldwin" logo I made helps it look authentic.

 Here's a picture of the back . I added black satin fabric to the bottom of the piano to cover Dear Son's legs to make the pictures look better. In hindsight, I am not sure if it really helped or if I should have left it off.

 

Here is a photo of the chandelier. I purchased it at Michael's however it was the last one there and a few of the crystals were missing so I removed the crystals and added the silver Christmas garland for a more graphic effect. Unfortunately, the glittered chandelier doesn't seem to photograph very well.

The rings were important to Liberace so I knew I needed to include them in the costume. I purchased two rings from Walmart for $5 each for the costume.

I added the broach to the cape to add some glamour as well. Here they are before I added them.

Here are the rings on Dear Son. I thought they made the costume.

And last, another picture of my son and I. Not sure why my eyes look odd, lol.

I hope you enjoyed the Liberace costume I created.

Happy Halloween!

Halloween Costume Pic Coming Later Today

I'll post Dear Son's Halloween pic later today.  He's been doing well however he is having a lot more seizures now and had an emergency at school yesterday so I am a little behind. I am taking him to the doctor on Friday to check his implanted device. He has a device implanted to help with seizures and I am guessing the battery may be getting low, hence the increased seizures.

I finished the costume late yesterday and it's awesome! Probably one of my best ever.  Sometime this morning, a friend of mine will be coming over to help me take Dear Son over to our clubhouse so I can get some pics of his costume.   I'll share it with you once I get a chance to get them downloaded. Thanks!

New You Tube Video of Dear Son

 

I've been telling you for months what a difference Dear Son's new blenderized diet has made for him and now I am excited to show you a new You Tube video they took at school.  You may remember back in 2009, Dear Son has the H1N1, was on a ventilator and nearly died. He contracted the H1N1 the night before he was going to leave on his Make a Wish Trip.  Dear Son also has a progressive neurological disease and wasn't able to move his leg, feet or even toes for quite some time after that. In October of 2010, I started him on Now Foods Coconut Oil and he was able to move his feet a bit, enough to turn his Lazy Boy chair (it's the only chair he can sit up in). Now, after 10 months on his new blenderized diet, he is much improved. He can now kick a ball, sit in his wheelchair without a bunch of props and is happy to kick the ball. I love the smile on his face after he kicks the ball!

Dear Son still has difficulty moving. I have to roll him over at night and position his legs, arms and entire body. He tires easily. He goes to school from 8 to noon three mornings a week and sleeps the entire day after that. He really can't manage more than three days a week or more than 1/2 of a day of anything. He has a progressive neurological disease.

The good news however is that with his new blenderized diet, made from whole/real foods, he has improved dramatically. Cognitively, he is more alert, more aware and happy. Physically, he is now able to move his legs, kick the ball, sit in his recliner and take his feet to turn the chair around (it's a swivel chair). He is also able to stretch his legs in the morning by himself. He does this every day now and previously could not move them at all. As a matter of fact, I can remember one year when his leg moved and I woke up in the middle of the night, wondering what the noise was.

You can click on the previous You Tube video in my side bar to see just how far he's come.  I also want to thank his LPN Linda at school. She is Dear Son's one on one aide and she works with him every day to do his exercises (which include kicking the ball).  When I look at the old You Tube video and compare it to the new one, it doesn't seem like the same kid!

 Note: Dear Son is 20 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 disorder.  http://www.youtube.com/watch?v=28cz65fWPW4

HALLOWEEN ENVY: YOU WILL WANT A WHEELCHAIR FOR YOUR NEXT COSTUME!

 

 

 

Happy Halloween!  Hah, I know it's not October 1st yet, but it's definitely the season to start thinking about costumes! As you know, I have written for many years about how to create a great costume for kids in wheelchairs and one of my tips was to create a costume built around the wheelchair. Halloween was difficult when Dear Son was a kid because he couldn't hold the Halloween bucket, he couldn't eat candy, he couldn't say, "Trick or Treat" and he couldn't walk. I didn't want that to spoil our fun so I had to get creative. Once I figured out that I should use the wheelchair in our costumes, everything changed.  The Jack in the Box was the first costume I created built around the wheelchair.

 

My goal in life has been to put the disabled on a level ground with everyone else. At Halloween, my goal is to create a costume using the wheelchair that is so good that normal kids WISH they had a wheelchair just to make their own costume!  This year, my dream has come true! Look at these fantastic costumes! 

 

1. An Ice Cream Truck!  How fantastic is this?  And how cute!  (Thanks Mary Beth for sending me this photo!)

 

 

 

 

 

2. A giraffe for a little girl with crutches!

 

 

3. Drums for a little girl with a walker!  Really!  You have to look hard to see the walker. Amazing! I know I just that word a lot but the photo speak for itself!

 

This photo of the red drums was from About.com-they have a lot of ideas and tutorials for wheelchair costumes,

4. Or maybe a Harley instead of a wheelchair for a day!

5. Or maybe they could be a construction worker?

 

6. Or maybe a Pirate's Ship!

 

 

 

Photo Courtesy: Sue Ellen Holmes

 



This year, the sky's the limit for kids in wheelchairs?  Wouldn't it be cool to have a Halloween Parade for the best wheelchair costume? Hmmm....maybe I'll have to do that this year!

After last year's fiasco where they would allow a costume party at Dear Son's school for "religious reasons", this year they'll allow costumes but no party. Really?  Anyway, I have a great costume planned for Dear Son using his wheelchair and will start construction in a week or so. We are getting some upgrades done now that Dear Son has grown so tall and we have to wait until they install the new parts so I can do the measurements to build the costume over the chair. It should be his best costume yet. You can check out his other costumes from year's past here.

 

P.S. I gave photo credits when the source was identified. There were many photos without any credits and I apologize for those. If you have photo credits for any of the above photos, please advise and I'd be happy to give proper credit.

Desk Makeover

 

Last year, Dear Son and I moved into a smaller apartment.  I sold about half of my furniture since it wouldn't fit in the space. Since I sold my kitchen table and chairs, along with my desk, I needed a place to eat and a desk.  I knew I wouldn't live her very long so I decided to look for some a table on Craigslist.  I measured and knew the exact dimensions that I wanted and I managed to find it on Craigslist for $25. Unfortunately, it wasn't in very good shape. I also needed chairs and had borrowed some chairs from my former mother in law until I could find some.  The table however was in rough shape but it was sturdy and the size was perfect.

Here is another view. I needed this table for three functions: eating, pc/office work and to clean up Dear Son in the morning. I have to wash his face and brush his teeth while he's in the wheelchair.

 

Up close, you can see it needs some work.

 I started by spray painting the legs a gloss black. My original thought was that I'd use a stain on the top, once it was sanded down.

 Once the legs and base was painted a gloss black, I got to work on sanding the top. By hand, lol.  That took a while but it turned out nice.

 Here's a look with the table base all painted and the top sanded down.

I loved it at this stage but knew it needed a stain or something. I actually lived with it a while like this since I couldn't decide on a stain color.  I eventually decided that since it was such a small place, that I needed to unify the furniture by painting it black. I just hated to do that after all of that sanding.

 

 

I ended up painting the top with the same paint that I used on Dear Son's dresser. It's a low gloss black paint.  I decided to add a monogram on top. What's nice about the monogram it that you can sit on either side of the table and it's not upside down for either person. Luckily my last name began with an "H"! I also chose a vinyl monogram versus a stencil in case I wanted to use this desk as a table or use it elsewhere should I move. The monogram is removable versus stenciling. I think this monogram is o.k.; I actually prefer a more script type monogram, something a little more elegant however since I wanted this monogram to appear upright regardless of which side of the desk/table you sat,this monogram seemed right.

 

 I also had a glass top made for it. That way, I didn't have to varnish over the monogram; it kept it removeable in case I changed my mind once I moved. The glass top was a fantastic idea too because it really helps the wear and tear on the table. The table still looks as nice today as the day I painted it! Yay! The down side of the glass top is that it's really hard to photograph since it reflects everything! Here's the finished product.

 I bought a new laptop too. Since my desk is in the center of the room and since I'll use this table for eating, I really didn't want a desktop pc there. Also, when you put your desk in the center of your room, you need to keep it neat and organized:)  If you don't keep your desk perfectly clear, this isn't the desk for you, lol.  I make sure I put everything away every day and don't leave anything on my desk. If you do, it looks messy. Luckily, I am very organized!

 I like working at the desk because I can see Dear Son when he's sleeping and I can see it if he needs my help. Since he's basically an invalid and needs help to roll over and for everything, that is important.  I work from home too so it's nice I can work and see him. I also love all of the light that comes in through the three windows. We have a nice tree outside of the window and it's like living in a treehouse. Very pretty.

 

I also needed a chair for my desk. I came across this chair at Goodwill one day for $2.99. I decided to buy it until I decided on a pair for the desk. I had priced a pair of chairs for the desk and they were averaging $300-$400.  Well, I bought this chair in the interim and oh my gosh, it is so comfortable that I couldn't part with it! Plus the color sort of goes with the yellow, white and black in the room. I also think the style is modern. The legs however were brown but I painted them black (don't have a photo of that).

 

 

 

Once I decided to use the chair, I looked for another one to match. No such luck.  About that time, I needed a little more storage for Dear Son's stuff. I decided on this black suede ottoman. It was actually called a "gaming ottoman" . It has storage inside and I store a lot of stuff in there. I store Dear Son's suction machine bag, his shoes and other supplies for him. It keeps everything neat plus provides extra seating when Dad comes over and eats lunch. When I move, I can use it centered under the table as a hall table if needed. In a small space, you need things that do double duty and you always need extra storage.  Stuff stresses me out so I like to keep everything nice and neat.

 

 

Here is a picture from the other side. (I have since painted the foyer to match the kitchen, lol.) One other item I added, was a small printer stand next to the desk. This holds my phone and external hard drive on top. I purchase a basket to fit on the shelf and that holds my office supplies (pens, stapler, stapler remover, calculator, etc.).  Below the basket, I have my Home Manual and Bill Notebook. No need for a file cabinet and everything is neat and put away.  Since I knew I wouldn't live in this space a long time, I didn't want to spend a lot of money. I found the printer stand at Goodwill for $4.99. Can you beat that? You can see it in the photo below to the right of the chair. I like it too because it keeps the phone and external drive off the top of the desk. I hated having something on my desk.

One last picture. Overall, I am pleased with how it turned out. I am looking to purchase a house next year so I am holding off on the chairs. I think I'll end up using this as a desk so I may decide to get the chair recovered in white leather or I may change the table color all together. Either way, I think it turned out o.k.  Here is what I spent:

Table on Craigslist: $25

Glass Top: $50 (If you purchase a glass top, be sure to ask for the clear spacers that fit between your table and the glass.)

Chair from Goodwill: $2.99

Monogram: $10

Printer Stand: $4.99 Goodwill

Storage Ottoman (It's actually called a, "Gaming Bench":  $54.00

So, overall, I spent just under $150 but I have a solid wood table that I could reuse, a comfortable chair and some storage. Everything is functional and reusable so I am pleased. 

I  hope you enjoyed my little makeover. Linking to Delightful Order Inspiring Thursday Party.