Friday, July 25, 2014



We finally went home last Friday, July 18th. Matt was hospitalized from July 7-18th.  We were discharged right from the ICU, a hospital first.  Typically, we are required to transition to a hospital floor first.

First, I need to thank you for your comments on my last post. They meant a lot to me.  I think the hardest part of these hospitalizations is feeling like you are alone in your battle to advocate for your child and to get them the best care. Hospitals don't make sense and the transition to the adult hospital was very different. It was great to hear that your experiences were similar and that you had to advocate as well.  I can't begin to tell you how many times I read your comments over and over since they brought such comfort to me. For that, I am thankful.

The hospitalization was challenging on a few levels. The first challenge was that when Matt was admitted from the ER to the hospital, they admitted him to a regular floor and not the ICU. While they had oxygen for him, he needed more. He struggled and breathed heavily from Monday afternoon at 3 p.m. until 11 a.m. Tuesday morning. I had paged the doctor on Monday and was told to bring him to the ER however they should have hooked him up sooner to the Bi-Pap or a different mechanism. I paged the doc at 6 a.m. on Tuesday morning and said that Matt was going to crash (respiratory failure) and asked the doc to see him. He came around 10:30 a.m. Tuesday morning and immediately put Matt on the Bi-Pap and called the ICU team to evaluate and Matt was admitted stat to the ICU.  The doc did ask me to text him Monday night, which I did, and he responded, however the ER docs didn't make the right call and admitted him on a regular floor. I knew Matt was breathing hard but I kept telling him to hang on. I felt a bit like a failure not being able to get more care for him since he was working so hard. It's not easy sometimes.
We had a few more snafus during the visit. Matt began vomiting from the gallbladder infection and they had to put the ventilator tubing in. They asked me to leave the room. I can't begin to tell you how wrong it felt to tell Matt things were going to be o.k. and that they were going to help him, knowing that they were going to put the ventilator tubing in him. Honestly, I don't know how much more I can take. The kid has been vented some seven times. It never gets easier. I left the room feeling like crap. Of course, he needed to be vented at the wrong time of day, when fewer people are around, like 4 o'clock in the afternoon. I called my Mom who is in a nursing home and I was just sobbing in the hallway far away from the adult hospital. I left and went to this other building because I didn't want to hear him struggle and because it upsets me so much when he's on the ventilator.  My Mom isn't doing so well either so it was a tough call. They took forever to get that tube in and I was sure he had died. I came back to the room, some 40 minutes later (I had asked them to call me when they were done.) and they were cleaning him up (diaper change). I was angry they didn't call me. They honestly have no idea what it's like on the patient side sometimes.  Normally, it takes five minutes or so to put in the tube; so this was awful.
If that weren't enough, they had to start more IVs after that and of course he's a hard stick. They had this one guy in there for some forty five minutes trying to get this thing (of course, he was their best guy) and he went through this blow by blow talking his way through this. I almost puked. Nothing stresses me more than medical talk and I hate the sight of blood.
This was probably one of the worst days of the hospitalization-so many things were going on and I just felt terrible for Matt. I kept thinking about why Matt has such a hard life when other guys his age have such great lives. I felt like it wasn't fair, you know. 
Scott (Matt's Dad), was really helpful this hospitalization. Typically, I stay with Matt 24/7 Monday through Saturday and then Scott helps on Sunday's. This time, because there wasn't any bed in the ICU, Scott alternated nights so I could get some sleep. He didn't help on his work days but that's o.k. because he works 12 hour shifts. Anyway, he stayed with Matt and the next night I came down and one of the nurse's came in to talk to Matt. I thought she was our nurse for the night however she was just coming in to talk to Matt. She told me how he opened his eyes for her last night (night of the vent). Well, I was rather shocked because Matt's eyes were swollen shut by that time. I should tell you that this was a beautiful filipino nurse and when Matt heard her sweet voice, that kid opened his eyes, lol.  I thought to myself that there is a God. After the day Matt had with the ventilator and everything that could have gone wrong, God blesses Matt by giving him the nicest, prettiest nurse he could and Matt loved it.  Sometimes, it's the little things that go a long way.
One of the next biggest challenges was extubation. A few days later, Matt was more responsive and his oxygen saturation numbers were better. I can usually tell when it's time to remove the ventilator because Matt has more "awareness" of the tubing and when he wants it out, he wants it out now! He'll cough until he gets it out. I explained that I thought it was time to remove it. There is never a perfect time however I usually know when that is. It's a judgment call and you never know how it will go.  I explained this to the resident and he decides that he'll be in charge. I said no, we need an Attending Doctor here. This is the same resident who couldn't draw blood from Matt for a simple blood test and had no clue how to suction Matt properly without gagging him so I knew he wasn't going to be "in charge". Honestly, after 22 years of residents, I don't want to see another one.  I didn't sign up for that. I know that sounds harsh however Matt doesn't need to be the guinea pig for residents for over twenty years. It took "hours" for the attending to show up. When he did, he asked a million questions so I knew he was nervous. He wanted to know if they ever needed to put the vent tubing back in after removing it.  I told him that Matt needed to be side lying for it and I held Matt's back so he wouldn't roll back and choke. Once the tubing was removed, Matt had an unusual response, for lack of a better term. Matt began to snort/snore while he was breathing. This went on for a long time. I had never seen that before. I should mention that earlier this year, before the doc prescribed night time oxygen, Matt used to have difficulty breathing at times and would make these noises. It's not a snore like sleep apnea but rather I would describe it as more of an impairment. Anyway, this went on for hours and it took 2 days of alternation between Bi-Pap and the various oxygen masks before he could breathe better. 
 This is a picture of the bile drain that was placed in Matt. When he had an infection, they put a drain in the gallbladder to drain the bile. The reasoning is that they don't want any more bile to become infected. He'll have this drain in for a month and there is a bag attached that I need to drain every day. Of course, they did not give me another bag. Just one for one month.  Okay?

The biggest nightmare of the hospitalization was the "home meds". I asked to give home meds in the ER and that was fine. Then when I got to the floor it wasn't allowed. Pharmacy came to visit me some four times and an administrator came only to tell me it wasn't allowed. Then after we were in the ICU it was allowed for two days. Then it wasn't allowed anymore.  Then when they didn't have the proper seizure medications, Ped Neuro Doc told the pharmacist to get the brand name seizure meds from me so I was allowed to give them for a few days until the hospital decided I couldn't give them. Of course about ten people came to harass me and tell me this, one after another. Finally, I called the New Attending Doc and explained the situation. He said it wasn't allowed and we had to give generic meds. I asked him to tell the staff not to keep coming to me and he said he would however four more people came to argue and tell me not to give the home meds WHICH I WASN'T GIVING. Seriously, they were yelling at me and I wasn't giving them.  I couldn't believe it. Of course, Matt was seizing like crazy and I had the brand name meds. And of course, the pharmacy was always late with the meds. As in five hours late one day! Really. Does a patient have to die and does someone have to sue them before we are allowed to give a patient brand name meds when the pharmacy does not carry them?  It was horrible. So thank you Canucker for sharing your experience with this and thank you all for  your comments.

I took this picture while we were waiting outside for Scott to pull around. We were discharged from the ICU and told to resume our normal routine. Matt didn't not go home on any oxygen, even though he was on 3 liters the day we were discharged. Of course, I put him on oxygen the minute we got home! He did fine.  As for the gallbladder, no instructions were given other than draining the bile. They do not believe his case was diet related however I went online at to see what foods might aggravate the gallbladder and tweaked his diet. I would have thought they might give me some guidelines, lol.  As for seizures, he's fine. I was able to resolve the issues with Ped Neuro Doc at the hospital and once that was done, he was involved with Matt's care like he normally is...he does a great job every time. I honestly hope he doesn't retire because I don't know what we'd do without him.

Moving forward, I doubt we'll come here again. We'll see Ped Neuro Doc but I am going to look for a new GI doc and a new Pulmonary Doc at a different hospital.

Matt's been out of the hospital for one week now and is doing well. Breathing is fine. Ped Neuro Doc had me reduce the volume and liquids for Matt which I first he wasn't urinating so I had to add some liquid and volume and now he's urinating fine. The best part is seeing Matt's smile again. He's still a bit quiet and he's lost some weight but he's smiling and his eyes are sparkling again. Life is good. I hope it will be another five years until we need to go back again.  Thank you again for your lovely comments. You helped me so much.

Tuesday, July 15, 2014

Back in the Hospital

After nearly five years of good health, Matthew is back in the hospital.  As  you may recall, Matt's last major hospitalization was in November of 2009 when he contracted the H1N1 and a viral pneumonia and nearly died.  Since that time, I added Now Foods Organic Coconut Oil in 2010 and switched him to a blenderized diet of whole foods, mostly organic.  While he did get his Vagus Nerve Stimulator replaced in 2012, he's been pretty much hospital free for for five years.

Recently, he started running a fever on/off and basically just looked poor, although his oxygen saturation numbers at home looked good. When Matt's well, he does not require any oxygen however earlier this year we saw an adult pulmonary doc who recommended two liters of oxygen at night since an apnea test revealed Matt's oxygen dropped low at night. I still do nebulizer treatments a few times a week but other than that, he's in pretty good health. I called our new pulmonary doc and they asked to bring Matt to the emergency room. Essentially, they started him on oxygen and admitted him although they weren't sure what was wrong. His belly was distended however an xray revealed nothing. His bowel movements and everything are regular.

Matt continued to deteriorate breathing wise and a chest xray revealed a partially collapsed lower right lung. On Wednesday of last week, they did an abdominal ultrasound and determined that Matt had, "acute cholecystitis" which is a complication of gallbladder. Matt has never had gallbladder disease. While it can be diet related, he does not have gallstones and is diet is excellent so it was more like the gallbladder wall thickening and sludge like stuff. They put a drain in and drained his bile. Acute Cholecystitis is not uncommon in the general population. In Matt's case the gallbladder infection pushed his diaphragm up and collapsed his lung. He began vomiting and that was problematic and very risky since Matt can't swallow and he can't move himself. I stayed by his bedside to keep him from aspirating. They finally had to put him on a ventilator since the vomiting episodes were more pronounced. It was very risky and a terrible time overall. He was vented for two days and then removed although we are still in the ICU. His breathing isn't too great and he's on/off the bi-pap machine. He's on mostly at night or until he gets tired. 

This hospitalization is a bit unusual and Matthew has not been following a normal recovery course. I can't put my finger on it but something isn't quite right. He is on four antibiotics (Clindamycin, Vancomycin, Flagil and Cefazime) however none of them seemed to make a difference at first (He was on Zithromycin and the other three initially but it was replaced by Flagil). We see the Section Chief of Adult Pulmonary & Critical Care who is an expert in respiratory failure and mechanical ventilation. I think we had the right doc and his treatment plan is not different than the treatment at the children's hospital but Matt's not responding as fast so I am not sure if it's just because his diagnosis is a bit different or what. I do like him though and think he's done a good job.

This is our first hospitalization at Big Academic Medical Center state of the art Adult Hospital. So far, I am not very impressed. The ICU unit is very short staffed. I haven't met any of the ICU nurses that have been there longer than 7 months. Their skill level seem fine but they are so busy that they aren't around and meds are constantly late. As in very late.  Due to Matt's vomiting, I asked Ped Neuro Doc if we could switch the seizure meds to IV. Matt's on 6 seizure meds so 3 were switched to IV and three were stopped. The nurses were very late and yesterday, his IV seizure meds were almost 5 hours late. Matt seized all day and I paged the neuro doc and calls weren't returned. I finally asked for some Ativan.  The night before I needed Ativan and the resident had no clue what is was or what the dose should be. At the Children's Hospital, there would be a sheet over the bed that listed all of the emergency medications for the patient and the exact dose for that patient based on his weight. I told the resident that I believed the half life had worn off of the seizure medications hence the increase in seizures. I told him I paged Ped Neuro Doc but never heard back.

Ped Neuro Doc hasn't been around much.  He's functioned as our primary for many years due to the complexity of Matt's issues. He's always done an outstanding job. I've paged him on/off in the past week or so and no pages have been returned. He did stop by the other day and told the nurse it was a social visit so I am guessing perhaps I am not supposed to call a pediatric adult for consult in the adult hospital.  I did have a conversation with our current attending if it was o.k. to consult him and he was totally fine with it so I am not sure what is going on. I called Ped Neuro Nurse this morning and left a voice mail for Ped Neuro Doc to call me and I'll ask him about Matt's seizure meds and the transition back to pills from IV and address this issue of the call backs, etc. I am not clear if he wants to be involved, if it's proper for him to be involved, if it's a payment issue (meaning he doesn't get paid if he visits us in the adult hospital) or what but I am very uncomfortable right now. 

The adult hospital isn't very patient friendly and some of the policies don't make sense. With regards to the rooms, there aren't any beds for family members so I have to sleep in a chair or on the floor. I am choosing the floor since my legs hurt to sleep in a recliner. In the children's hospital, they had a sofa type bench that flipped over into a bed at night. In the bathroom, the bathroom sinks have really tall faucets that slop water all over. They also are just sinks hung from the wall and don't have any ledges so there isn't any place to put anything. They put the towel bar over the toilet (no lids) so when you flush all of that bacteria that sprays up can get on the towel. Nice!  None of this was thought out very well. The children's hospital was designed much better...if they just did what they did over there, it would have been a great improvement. Instead, they put money into a skybar cafeteria with multiple food vendors. You can sit and eat up there and look out over the city.  It looks more like a nightclub but hey, which would you rather have, a great ICU room and great medical care or a well designed food court?  Their priorities clearly were out of line for this hospital.

For infection control, they have some odd policies.  They don't use diapers in the ICU so basically the patients shit all over the beds. They claim it's for skin breakdown but I told them there isn't skin breakdown if you change the diapers.  They claim they need to monitor the output and I suggested they weigh the diapers and they say they don't have scales. They use a condom catheter (non invasive it just stick on the end of the penis) to monitor urine but bowel movements are all over the sheets and bed. The nurses don't clean him very well and I brought wipes from home and diapers and they will use the wipes and I'll help them clean up however it's hard to get Matt cleaned up because stool is everywhere and he's hard to move on these hospital mattresses and when he's on a ventilator. I told the nurse that if they don't clean him up he will get skin breakdown. Disposable diapers would be better since any infections would be disposed with the diapers. They also use flat sheets that move around the bed so the mattress isn't getting disinfected at all.

The rooms are dirty. I've been there a week and nothing dusted or disinfected at all. I had to ask for the floors to be mopped so I wouldn't fall. I had to ask for housekeeping to come. They started Matt on formula with a feeding pump since they have to go so slow. This pump was downright filthy with slop all stuck on it. No dusting has been done in a week. When they did clean the toilet, she sprayed and slopped water all over. When I went into the bathroom, she said it was "wet" and I essentially had to wipe everything down since it looked like she just sprayed the entire toilet with water and cleaning solution and forgot to wipe anything.

Nurses are all new and while most ICU nurses only have two patients, when they go to lunch, they have to cover for each other. All weekend, nurses kept asking each other for help and they were denied since our nurse was covering four rooms already. I was asking one nurse why everyone was new and she said it was a great hospital for "training". I am guessing they come here to learn then leave due to short staffing.

They also won't allow me to give our home seizure meds for Matthew. It's an Act of Congress to try to get them to allow me to give home meds. I brought original containers with home meds and they still refused. I don't like them giving different brands of seizure meds so I like to give him them myself. The pharmacy is notoriously late for getting meds up to the floor so you couple that with the nurses being behind and it's a total disaster. Instead, Matt got to have a ton of seizures because they don't have their act together. They had an administrator see me since I wanted to give meds and bottom line is they don't allow it. I am not sure if we'll come back here anymore. In the past, our doc would sign off for me to give home meds and I could do it. The attendings don't have a problem with me giving meds but pharmacy won't allow it.

Matt's in isolation due to a past MRSA diagnosis. As a result, the isolation policy is very restrictive and varied in it's enforcement depending which nurse  you get.  At the children's hospital, I got a parent tray for meals. I could bring food or eat in the room since I was staying with Matt. There aren't any parent trays here and they won't allow me to bring any food in the room. Since I don't feel comfortable leaving Matt alone, since they have no staff, and because I am suctioning him frequently, I don't eat all day.  So not eating all day, having to sleep on the floor and watch the kids seizing while meds are late and docs won't answer their pages, aren't endearing me to this new state of the art hospital.  On top of that, I asked for water the other night and the nurse wouldn't allow it in the room due to isolation procedures. She could bring me water but I'd have to drink it outside the room. If you want to eat anything, you have to go outside the ICU into a waiting room to eat.  Matt's not stable so I am afraid to leave him alone. It takes 15 minutes or so to go get food and I don't want to leave him. There aren't any refrigerators available. At the old hospital, they had refrigerators in each room. The water outside the room is a bit much. Can you imagine that? can't drink water that they get for you from their pitchers?  Nurse Alisha said they don't want any bugs (meaning infections) brought into the isolation rooms from products from the outside. I would think hospital infections are going to come by having such a dirty hospital and their lack of diapers.

Scott (Matt's Dad) is helping out a lot.  In the past, I'd stay with Matt all week and he'd relive me on Sundays. Now he's coming every other day to allow me to sleep at home since there aren't beds here.  He works the next three days (he works 12 hour shifts) so I'll have to sleep on the floor at night. It's been great to have his help.

As for Matt, the seizure meds were given on time this morning. The Attending said we'll be in the ICU a while yet, Matt has to be able to breathe at 40% and we aren't there yet. He works pretty hard at time however I am hoping that once we get the seizure medications administered on time that perhaps Matt's breathing will improve once the antibiotics kick in. If not, they'll have to re-vent him. Matt's been vented some 7 times in his life and when they removed the vent, this time was the scariest...he struggled a lot and it was really frightening.

Overall, I am depressed and ready to go home. It's hard when you know you are a long way from getting out of there. Thank you in advance for your thoughts and prayers for Matthew.

Monday, January 06, 2014

New House Bathroom Pictures

Happy 2014!  It's hard to believe we've been in our new house 8 months already. I feel like I did nothing but work like crazy all of 2013.  First it was looking for a home, then getting the mortgage, then getting ready to move, moving in and everything that comes with it. All while making all of Matt's food from scratch and taking care of him. Whew! It seemed like a lot. Now, things are feeling more like home plus a lot of things are done now. I love knowing that once everything is done, that I can relax for a while. 

Here are some pictures of my new bathroom. As a reminder, I purchased a townhome that was built in 1986 but was totally redone when it was purchased by a real estate agent who flipped it.  I always thought I'd be the type to redo things however I must say, it's been great moving in and having everything done already. Well sort of...while everything is mostly new, it was more like moving into a new home since there weren't any towel bars, curtain rods, closet organizers, blinds, etc. 

I think my bathroom is probably one of my favorite rooms. Honestly, this bathroom is so me that I don't think I would have made different selections. They put travertine tile on the shower walls and floor and then did a beautiful dark wood vanity with a travertine marble top.  They used bronze hardware in the sink and tub/shower and had a brown vanity mirror.

To complement this, I added some bronze towel bars, a towel hook, new wastebasket, toilet bowl cleaner and toilet paper holder in bronze. I added some tan/cream towels with a regal design. For the shower curtain, I put up two rods and put the liner inside then added drapery panels outside for a longer, more elegant curtain. Some silk roses in a crystal vase on the counter. I still have to look for a wool rug but that will come later this year. I need to look around a bit. Until then, I have two rugs that were there when I moved in that I'll use for now. The travertine floor is just gorgeous and I love the paint color. They used Benjamin Moore's Bone White as the paint color and used it in my master bedroom. It doesn't photograph very well, but it very pretty. I liked it so much, I've painted the kitchen and hallways the same color and will have the living/dining/foyer painted the same. Basically, the whole house will be this color, lol.

 I hope you enjoy the pictures. I'll try to be a little more timely with the rest of the photos. I just took some pretty kitchen photos this weekend.

Friday, November 29, 2013

Best Toys and Gifts for Special Needs Children

Back in 2006, I wrote a blog post titled, "Best Toys and Gifts for Special Needs Children". Since that time, it's been one of my most popular posts. Last year, I updated it and I thought I might reprint it again. I poured over the toy catalogs and websites looking for those toys that I thought were really good. I was amazed to find that there still wasn't a lot to pick from so I decided to do a few things to make it easier. First, I created a link at the top of my blog for "best toys and gifts" and I've added all of the toys I'll talk about today. I have included pictures and links for each toy along with a description of why I like the toy and how I think the child would use the toy or an explanation of how Dear Son used the toy. Disabled children enjoy many of the same toys that normal kids do however when they play with the toy, they play with it whatever way is easiest for them. In Dear Son's case, he had poor trunk control, couldn't sit up, no use of his arms or hands but liked to play with things with his legs, feet and/or mouth. I have also included a link for all of the toys today to the Amazon website. If you can use this link, I'd appreciate it-it doesn't cost you any more for the toy than going to Amazon directly, but Amazon pays a small referral fee and I use this to help with Dear Son.

Some of the best toys can be found in a few places:

1) The 0-24 month aisle typically has the best selection of toys that severely disabled children can actually do. Most of the toys in this aisle require gross hand or foot movements to activate.
The down side of this aisle is that often disabled children's chronological age exceeds their developmental age so sometimes these items might work for the child however the child is too large or tall for the item.

2) Many stores such as Target or Walmart have these cheap toy aisles where you can get toys for $20 and under. In these aisles, you'll find things like musical keyboards, etc. What is great about these aisles is that these toys are kept "simple" which means they are easier to operate for disabled kids. Often times, toys can be too complex for our kids. In this aisle, you'll find a simple keyboard that plays entire songs when you press one key. In the more expensive aisles, you'll find keyboards where the keys light up to show a child where to press, in hopes of helping them learn to play. Or the keyboard will come with a microphone for the kid to hold and sing. Often times, you don't need any of those things. Simple is best.

3) Be sure to check out Walgreens and drugstores for toys. One of the best toys Dear Son ever owned was this train that I got at Walgreens. It went around a 36 inch round track. I set the train and tracks on the family room coffee table and he would lean on the table and use his arm to knock the train off it's track. Then he would laugh. He loved working hard to get his arm over enough to knock the train off. I wished I could have had a tunnel for the train too; he would have enjoyed that. I tried to purchased nicer trains after that but the Lionel ones didn't work as well for Dear Son-the track was too sensitive and the train kept coming off. With the Walgreen's train, Dear Son could be a little rougher and knock into the table and the train would keep moving.

4) Amazon-It's often hard to get out and shop with a disabled child so it's easier just to shop online with Amazon and have it delivered to your door.

Without further delay, here are toys that I recommend. For your convenience, I attached a link to Amazon and have also listed the current price of the toy as of today.

I can't say enough good things about this product. This is a great product for special needs children who have poor arm/hand control or poor trunk control. They can knock the pins over several ways-with their hands, their head, their arms or by bumping the table. My son couldn't roll the ball but loved knocking them down by the ways I described. He loved the music it played and got such a kick out of things crashing. In addition, it was a great way to help him learn to use his hands/arms in occupational therapy by knocking the pins down.

Musical Hands Mat $39.95
My son used a musical mat similar to this when he was a baby and learning to roll over. The physical therapist would lie my son on the mat and then help him roll over. As the child rolls over, the music is their reward thus helping them work on rolling over. This mat allows you to set it up to hear each note or to hear complete songs. When babies can't move at all, you want a maximum reward for a small movement, meaning you want to activate the music with the slightest movement. I don't think they'll use it like the child shows in the photo, meaning placing their hand on it but rather as a tool to help them learn to roll over.

Fisher-Price Precious Planet Kick and Play PianoFrom Fisher-Price $29.99

This toy would be great for a child who had good foot/leg control but limited hand control. It would encourage them to move their feet. Also, if placed in their crib, or even on the floor, it would be easy to activate with the slightest movement.

Vtech Little Smart First Words Plus Toy From vtech

Five stars for this toy! I used this toy when my son was very small and I wasn't sure if he even knew what was going on. I would hit the Mama button and after a while, he was able to find that button and hit it. He was able to learn where the Mama button was and also some of the other buttons. This was great because he couldn't speak. I did work with him on this toy every day so it wasn't like he learned it by himself. When he pushed on the buttons, he did it with his mouth/chin, not his hands (Dear Son didn't have any use of his hands/fingers.)

Here are two examples of these bounce back dolls. The base is filled with sand and the toy is made of vinyl.

Rocket USA Bozo Bop Bag $16.99From Rocket USA

This product is great for a child who can't sit up but can use his legs. They can lay on the floor and use their legs to kick the Bozo down and it bounces back up. It's important to remember that special needs kids need ways to release energy just like regular kids do. My Dear Son didn't have use of his hands or arms but his legs and feet worked well. He loved this. The other reason this is good is because as they are kicking and moving their legs, they are strengthening their core which is great for kids with low trunk control or for kids who can't walk. Any time you can help them increase their core muscles, it will help them for walking.

Rocket USA 46 Inch Bam Bam Bop Bag Obama $34.98From Rocket USA

See Bozo review for comments.

Easy-Twist Play Tent House: Premium JUMBO Size Six Sided Hexagon $38.60From eWonderWorld

This toy is great if your child can't sit up. My son had no trunk control but good use of his legs. He loved to lie down in the ball pit and take his legs and press down on the sides of the tent to try to knock it over. Often times, he'd play and then get tired and liked to fall asleep in there with balls on him of course! This ball pit is similar to the one he had and he was able to lie on his back in there and not choke on anything. I would not recommend lying a child who can't roll over face down in there. I never did! That being said, I believe it to be safe or I wouldn't recommend it. This was one of my son's favorite toys. **You need to order balls to go in here! 200 Plastic Pit Balls for Play Tents: 4 Colors - Red, Yellow, Green, Blue $42.60From eWonderWorld

These are the balls to go in the ball pit.

Alex Ready, Set, Go! Red Trike $49.99 on sale (Regular Price $199.99) From Alex Toys

Love this trike! Oh, how I wish they had something like this when Dear Son was young! I like the fact that it has a tall back, has seatbelts and straps, has a umbrella to protect against the sun and has a handle to push them. I think this would be a five star toy! Great for a child with poor trunk control but legs/feet that move.

Playskool Chuck My Talking Truck $31.58 From Playskool

Dear Son loved Chuck the Talking Truck, especially when he crashed into the wall or something. It's been upgraded since then and Chuck "comes" when you call him, meaning it's voice activated. Regardless, I think this would encourage vocalizations of some kind with the kids. Even if your child couldn't vocalize, you could call the truck.

Photo of Dear Son listening to, "Twas the Night Before Christmas Story" by Mr. Christmas.

Mr. Christmas Winter Wonderland Village Christmas $55.60

This is the item that I ordered for Dear Son this Christmas. It's a train that goes around the village which is comprised of a church, townhouse and Christmas tree. It plays 15 Christmas carols and 15 year round classics. This also comes with an A/C adapter. This items typically retails for $80 or more however I found the best price at Amazon. The A/C adapter can drive up the price a bit on these products however it's really great. Dear Son listens to these so much that I'd have to replace the batteries constantly so the A/C adapter is appreciated. This item is fairly small, only 10.75 inches wide which will be perfect for his nightstand since he has to lie down a lot since he can't sit very long. Also, he loves trains so this product will be perfect for him. He'll love to watch that train go round and round and the music will be very soothing. One thing I personally like about Mr. Christmas products is that the music is really nice and doesn't get on your nerves after hours of non-stop use. As with all Mr. Christmas products, they come with a volume control.

Mr. Christmas Symphony Surprise
My son loved this item. Mr. Christmas makes high quality musical items that my son would watch for hours. What's great about Mr. Christmas musical items, versus other musical products, is that they have a volume control and the sound quality of the music is good. Cheaper musical items have poor sound quality or the volume control is really loud and scares the kids or is annoying. Mr. Christmas items have been a favorite of my son's for years. While this one is currently unavailable on Amazon, I have purchased Mr. Christmas musical toys at Target, American Sales or home improvement stores. Each year, Mr. Christmas develops new musical items. You can check the Mr. Christmas website and then locate a retailer from there. If I recall, that’s how I located the Mr. Christmas Symphony Surprise; we got it at Menards for $79.99.

Child's Rocking Chair - Espresso Brown Finish $55.99From Table & Chairs

Child's 2-Slat Rocking Chair – Red $47.78 From Kid Kraft

Angel Line Country Adult Rocker $137.49From Angel Line

My son had poor trunk control and no use of his arms and hands, was wheelchair bound but had good use of his legs and feet. He loved using a rocking chair. The rocking chair gave him the freedom to move around the room and offered support. He would sit in the chair and scoot the chair by moving his feet. The rocking chair helped him practice his balance by constantly working his torso. What is important is that you need the back of the chair to be tall enough to support their back and their head. The top of the child's head should be even with the top piece on the back of the chair since they need head support. You can not leave a child unattended in this chair nor use it near stairs obviously. My son loved to sit in it and scoot over to the window, lean his head on the window and look out. There are many wooden rocking chairs to pick from on Amazon so be sure to check them out and get the right height.

Radio Flyer Pathfinder Wagon Red From Radio Flyer $59.54

My son had poor trunk control and was wheelchair bound. He loved the red flyer wagon and this one is great because it has a taller back which would provide support for kids with poor trunk control. It also comes with a seatbelt. I walked my son every night in his wagon and he enjoyed it more than walks in his wheelchair. You want to make sure that their head is supported by the backrest. I've read some comments on turning and I don't know about that. When my son was small we had the Red Flyer with the wooden sides. I would think you should be o.k. I would recommend the umbrella for days when you want to take a special needs child outside. Often times, they can't wear sunglasses or they fall off so an umbrella would make it easier on them especially if they can't move their head to keep their eyes out of the sun.

Radio Flyer Umbrella Accessory $17.82 From Radio Flyer

You may want to consider this accessory to add on to the wagon. If your child is special needs, they may not want to wear sunglasses or may not have enough head control to keep their eyes out of the sun. Also, on really hot days, you want to keep them from getting sunburned so this is a great idea. I have to wonder if you might also be able to clip this umbrella to their wheelchair.

Elmo Farm Fun Video Play-A-Sound $17.95From PIL

I like this book for several reasons. First, Dear Son loved it when I read books that had some sound for the different animals or characters. From a developmental standpoint, I liked it because he soon learned to "anticipate" when the sound was coming in the story, especially for sounds he liked. That helped me understand what information he was processing in his head. This book goes a step beyond that and not only gives the sound of a horse galloping but shows the horse galloping on the LCD screen. Often times it's helpful for children with disabilities to learn new information when they get information from different senses; in this case, they can "hear" the horse and "see" the horse. I'd recommend this book or other books that are "press and play" so to speak, even if they don't have the LCD screen.

Baby Einstein Press and Play Pal Toy, Panda $34.98 From Baby Einstein

This toy is similar to a toy my son loved. By pressing the hands or feet of the toy, different instruments are activated. My son had no use of his hands but I imagine he would press on the toy with his feet or bite on it with his mouth. You would soon learn which sounds are pleasing or interesting to your child. Also, the music calms them. My son had a similar toy that he used at bedtime and he pressed it often as a way to soothe himself to sleep or when he had seizures.

Cat-One of the best things Dear Son really enjoys is our cat. A cat makes a great pet for a severely disabled child who can’t walk or move much because the cat is active and can do things that will make the kids laugh. The reason I would choose a cat over a dog is simple. With a child in a wheelchair, it’s often too hard to walk a dog with the child or there are many times when you can’t leave the child in the house to go out and walk the dog.

When choosing a cat, I referred to the book ASPCA-The American Society for Prevention of Cruelty to Animals to help me find a cat that met our needs. I looked for a cat that was: 1) good with kids 2) lap cat 3) liked to play.

To this day, Dear Son loves our cat. The cat meows when he wants Dear Son to pet him. I lift the cat up to Dear Son’s bed and then take Dear Son’s hand to pet the cat. The cat kisses (sniffs) Dear Son. The cat also loves to sit on the armrest of Dear Son’s wheelchair before and after school. The cat also loves Dear Son’s art projects from school. He likes art projects with pipe cleaners (now called “fuzzy sticks”, lol). Dear Son gets a kick out of the cat playing with his projects.
Original Slinky $6.87
by Poof Slinky

Plastic Slinky (Colors May Vary) $6.82
by Slinky

Dear Son's occupational therapist recommended a slinky and he loved it. What's great about a slinky for disabled kids is that it doesn't require much movement from the child to get the slinky moving. If a child has difficulty moving or controlling their arm, this is perfect for them.

Stocking Stuffers

Veggie Tales Silly Songs Brush-a-long Musical Toothbrush $3.99 From Veggie Tales

This musical toothbrush runs for 2 minutes-the recommended brushing time. What is great about these toothbrushes is that the handle is wider which would make it easier for a child with special needs who has poor hand control to grip. While you may still need to add padding to make it easier, it's a great start. I used these for lab blood draws to, to distract my son while the tech was drawing blood. I liked musical toothbrushes versus other toys because they were slim and easily portable versus larger toys that were musical.

Spider Man Musical Toothbrush $6.95

Great for a stocking stuffer. Music plays for two minutes. Comes in red or blue. Not only is 2 minutes the recommended amount of time to brush your teeth but I took a musical toothbrush along to a blood draw. I held the toothbrush in front of my child and pushed the button; he was distracted by the music and the lab tech was able to draw his blood without any crying!

Sesame Street Finger Paint Bubble Bath $6.95From Sesame Street

Nice stocking stuffer. This is something to make bathtime fun. The way I would use it for my disabled son was to use the paints to write "I Love You" or something on him at bathtime. It's hard when your child can't play with something but you still can do things to make bathtime fun for them.

Hohner Kids Single 5" High Cage Bell, Assorted Colors $4.80From Hohner Kids

Nice stocking stuffer. This price is for one bell. Dear Son liked this type of bell-he would pick it up between his toes and shake it.

These are my absolute best toy/gift ideas for special needs children. I hope this list will help you find some gifts or give you some ideas for your special needs child. In the future, you can click on the store link at the top of my blog and it will link you to any and all gift ideas.

Note: Dear Son is twenty two years old and suffers from seizures, dystonia and is severely delayed as a result of a random mutation of the ARX gene. He also has a progressive neurological disease.

Thursday, October 31, 2013

Halloween Wheelchair "Voice" Costume!

Happy Halloween! 

It's been ages since I posted but the truth of the matter is that life has been pretty busy since I moved into our new townhome.  Basically, Matt is no longer in school anymore so I don't have any free time at all. Scott (my ex husband) takes Matt every other weekend from Saturday night until Monday morning so I have around 24 hours to get things all my errands, any house projects and anything else I want done.  It's really hard work caring for Matt 24/7.  I don't mind but I have to hustle every day to get everything done. I cook everything from scratch for him, prepare all of his meals, feedings (he gets one cup every hour so feedings take 2 hours) plus getting him up, changing him, dressing him, taking him out for walks and moving him with the hoyer lift. It all takes time.  He's a big man to move and it's a lot. Anyway, on to the fun stuff!

I decided to make a "Voice" costume for Matt this year. I like to select costumes where it's natural for the person to be sitting down since Matt is in a wheelchair.  In addition, I wanted to kick it up a notch this year, and send out a card.  Since Matt is non-verbal, I decided to add the words, "Because everyone needs a voice." to the card.  I think it's important for everyone to be heard and it's just a fun reminder to acknowledge the disabled.  I would give the world to be able to talk to Matt, to have a conversation with him, to find out what he likes and what is in his heart. I'd love to know what he's thinking about.  I do know what makes him smile but it would be pretty good to hear him talk. Matt's only spoken 5 words in his life. They are: hi", "Mom" and "I love you".  The "I love you" isn't really intelligible to most people but I know what he's trying to say.  He hasn't said the "hi" or "I love you" in years and only recently started trying to say, "Mom" again. I melt every time he tries to say it. It should not be hard to say "Mom".  (Here's a picture of me, lol.)

One thing that changed for us was that when we lived in our studio apartment, I could hear Matt if he needed me at night. Matt's bed was on one end of the apartment, the living area and kitchen were in the middle and my bedroom was on the other end. It was a very pretty apartment and if Matt needed to be changed at night or needed anything, he'd make a noise and I could hear him. In our new townhome, our bedrooms are next to each other but you have to go into the hallway to get to his room. As a result, I can't hear Matt breathe at night very well from my room. If he needs to be changed, he coughs "once".  He coughs "once" when he needs to be changed and sometimes he justs "coughs" to clear his throat. That means, I have to jump up and go and see if he needs to be changed or if he's o.k. It's a lot of work and when I am tired, I always pray that I'll hear him when I am sleeping. Sometimes, I wake up and wonder if I really heard him or if I was dreaming. I don't ever want him to lie in pee at night and it's stressful.  Matt doesn't have the strength to cough more than once so I have to be on my toes! It makes you appreciate all of the gifts you have when you understand how difficult it can be for the disabled.  That's kind of why I thought the phrase, "because everyone needs a voice" was a perfect tie in to his costume this year.

Since Matt is getting older, I thought I'd create a card and send it out for Halloween instead of Trick or Treating. He's a little old for that although if I could get away with it, I'd parade him all over the neighborhood because it's such fun! I still like to celebrate the holidays with him and I love creating costumes for him. And yes, I'll probably create them until he's 50 years old, lol.  I just love that young man and it's hard not to celebrate him. 

Here are a few pictures of his costume:

In other news, September marked three years Matt's been hospital free from pneumonia.  Since I started Now Foods Organic Virgin Coconut Oil, Matt's never been hospitalized since for pneumonia. This is huge because Matt used to get three pneumonias a year.  I give him the coconut oil plus a blenderized diet made with mostly organic foods and made from scratch and it's kept him healthy.  We did have some issues the past few months with seizures and secretions however. Matt's neurologist was sick and out for a few months so we saw the Nurse Practioner (in May) to adjust his Vagus Nerve Stimulator however she did not set the device at the proper setting. Matt had the new device replaced last November and they were ramping it up however she failed to increase the setting to his previous level (the level he used prior to the replacement). As a result, Matt had seizures for months which meant he had a lot of secretions. I had to do breathing treatments daily to manage the secretions (the increased seizure activity caused the increased secretions). Then I was up a lot at night making sure he could breathe.  We went to the neurologist last week and the nurse mentioned that the setting wasn't correct. They adjusted the setting and Matt's seizures decreased dramatically and he hasn't need any treatments.  I can't begin to tell you how much sleep I lost over the past 5 months let alone that Matt suffered.  I am glad the neurologist is back! I was unaware that the setting was too low or I would have mentioned it.

We also got to show off at the neurologist's office last week. Matt is now able to sit up in a portable wheelchair and use his feet to move it.  Granted, Matt can't sit up very long (less than 5 minutes) but he hasn't been able to do this in almost ten years.  He had a little trouble getting his left foot moving and then the doctor and nurse started cheering him on and  clapping and he was able to move his feet a bit. Dad pushes the wheelchair to help him but it's pretty amazing considering that he couldn't even move a toe in 2010 before I started the Now Foods Organic Virgin Coconut Oil and his blenderized diet.

Anyway, Matt looks great. I am so blessed to have such a wonderful son. Matt grew up into the nicest young man a mother could ever have.  I hope you have a Happy Halloween.


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