New Classroom For Ben

We are officially all settled in our new house and Ben has adjusted better than I expected. Took him about a week, but after that he was ok with his new home. The day of the move, he kept signing to the movers "all done" whenever they walked by with our furniture. I am sure the whole process was very confusing for him. Having him and all of his medical equipment on the first floor has been so nice! Makes taking him to bed and pretty much doing everything with him so much more convenient.

Right after we moved, we had a meeting with his school team. Ben's behavior has still been an issue and his Developmental and Behavioral Pediatrician agreed to come to school to observe and see if she could offer some tips to help. During that meeting, it was decided that his focus should be communication, not so much teaching him his letters, numbers, sight words, etc. He needs to learn more signs to help his frustration and possibly start using a communication device (which we have an appointment at Childrens to start this process). After discussing different options, it was decided that he would be changing rooms to help with his new communication goal. His new classroom will be the First Grade Resource Room starting in January. This room has four other students who also have multiple disabilities. They all go a full day because they are in first grade, but Ben will still just go a half day. He will also be doing gym, art, music and science lab in his new class. All those activities have been adapted for his whole class...which is a good thing because we were struggling with his art teacher not willing to adapt anything for him. He will keep the same interpreter, Speech Therapist and Physical Therapist but will be getting a new Special Ed Teacher and Aid (we are going to miss our current ones). He will also be getting a new Occupational Therapist because she felt "Ben was a waste of her time". Hoping these changes will help him have a better time at school. And, I am glad to be removing him from those professionals not willing to be patient with him and try to help him.

We are MOVING!!!

Next Thursday we will put putting our life on a moving truck (two actually) and moving it about 3 miles down the street :) (We love our school district and wouldn't dare change that on Ben).

For those that don't already know, the actual closing on our current house was a tad stressful. Every single thing that could have gone wrong, did...and it delayed the close for two weeks. Thankfully, the owners of the house we are buying held the house for us.

We are now in the process of painting and cleaning - with the help of family. The amazing owners have agreed to let us come and do work before close so the moving process is easier. As a matter of fact, the owner is helping to strip wallpaper tomorrow. I am in shock at how nice people can be! All this will make it so much smoother when Ben arrives because all we have to do is unpack. I can't wait to show him his new room on the FIRST FLOOR! The hard part will be deciding how to configure his room. He comes with lots and lots of medical supplies/equipment...so making those look "homey" and kid like isn't always the easiest! :)

If you need our need address, just send me an email: amy.russo@gmail.com

Cochlear implant: simulation on speech and music

This is what sound is like for Ben. He wears a 22 channel implant on one ear and 20 of those channels are turned on. Surprisingly, he enjoys music.

Trick-Or-NO TREAT!

Leading up to Halloween this year, I've been periodically showing Ben his cool dragon costume. Every time I showed him, he signed "all done" until I took the costume away. I was worried I wouldn't be able to get him to wear it, but once again he surprised me and he put it on with only a little whimper. After that, he thought it was funny to be out in it with all the other dressed up kids. What I wasn't expecting, was that Ben wasn't wanting to partake in the "treat" part of trick-or-treating. The video captures it best. (the sign he is doing with his hands after turning the candy back is the sign for "all done/finished").

Farm Boy

Ben's class went on a field trip to a local farm. The highlight of Ben's day was feeding the cows. He just thought it was hilarious. And his picky cow kept on spitting out the corn cobs which only added to the amusement. Ben is definitely a farm boy at heart.

Wow...lots going on!

We decided a few weeks ago to put our house on the market. We knew it was time to find a house that had the option of putting Ben's room on the first floor to avoid carrying him and his supplies up and down the steps. Our current house just wouldn't accommodate that and putting on an addition wasn't something we wanted to do. So we listed our house and hoped it would sell, but expected it to take a while due to the market and time of year. When it sold in 11 days, needless to say we were shocked and thrilled! That meant we had to get moving on finding something for us...and we had pretty specific needs because of Ben and the fact that we weren't willing to change school districts. But, with the help of our wonderful Realtor, we found a house! And, October 28 we will be moving-not a lot of time, but the people who bought ours want in ASAP.

Then, this past week Ben became pretty sick with some kind of intestinal bug. He is really struggling to stay hydrated even on straight Pedialyte. He had something Monday and Tuesday, got better on Wednesday then got super duper sick on Thursday. He isn't any better today. We are trying an anti-nausea med this morning prescribed by his doctor to help him keep the clear liquids down. If that doesn't help, we will have no choice but to admit him for IV fluids. Praying it helps and he can start to recover. He is just so weak and out of it, it breaks my heart that I can't do anything to help.

Takes a Village

The saying "It takes a whole village to raise a child." does a good job of describing Ben's first day of Kindergarten. He had 7 adults there to make sure everything went smoothly for him (his usual team will consist of 3 main people with him at all times). I am so thankful because it went as well as it could considering how much trouble Ben has with change. And this year, the changes were everywhere (in addition to all the new people and the new room, he ended up having a last minute interpreter change too and didn't get the same woman we loved from last year).

There is still a lot of accommodations that need to be made and things that need to be figured out logistically, but overall I think he is going to be in good hands this year.

Ben and Nurse Heather getting ready for school.

And off he goes into the building.

School...what is going on?!?!

Ben wen to school today to see his new classroom, meet his teacher, his special ed teacher and his one-on-one aid. We thought it was a good idea for him to see everyone and his new room before it became filled with 23 other Kindergartners.

He seemed excited when I showed him his picture card for "school". We got there and we pushed him into his new classroom and he instantly started signing "all done". He eventually warmed up to the place and his new teachers enough to allow me to take him out of his chair and put him into his pony walker. He cruised around the room once then took off down the hall. His nurse followed him while I continued to meet with the teachers. After about 5 minutes, we decided to go find Ben and see where he went. I was heartbroken to see that he found his way back to the Preschool wing and when I spotted him, he was turning towards the door of his old room. The door was shut and the lights were off and he just stood in front of the door reaching for it to be opened. He kept on looking in the window next to the door and was just thoroughly confused. After a few minutes, I turned him around and pushed him in the walker back to his new room. He drug he feet the whole time and cried.

I now he needs to move on, but I wish he didn't have to. This is going to be even harder than I expected it to be. Tomorrow he goes back again for a 30 minute orientation with half the class.

MUST get a bigger trach ASAP!

I am trying to see if Ben can get in today to get a bigger trach put in. If a bigger trach will make it harder to pull out, I can't go another day without trying one. He has now had 7 emergency trach changes since Saturday and I can't imagine him going to school with this issue. And the ENT team isn't sure what size he can move up to since his trachea is so short but hoping we can move up some. A scope through his trach during the office appointment will determine if the trach is ok.

Back To School Supplies: Bigger Trach

We have added a bigger trach to Ben's list of back to school supplies. We will go in on Monday and get it put in during an office visit. They will do a quick flexible scope at that time too to make sure it isn't rubbing against anything. This will hopefully make it a little harder for him to get it out when angry.

School and Behavior Plan

Ben starts Kindergarten on August 23. He will be going from 9am until noon Monday through Friday. He will have a new teacher, a new special ed teacher, a new one-on-one aid, new therapists and a new classroom. Lots of changes for him and he doesn't usually do well with change. To say I am nervous is an understatement. I'm very thankful to have him start the year with the same two home care nurses and the same interpreter though (his one nurse is expecting and will only be working until December).

We have also been meeting with a Child Psychologist at Children's Hospital to develop a behavior plan to break the Self Injuring Behavior "SIB" Ben has been doing (head hitting on the floor, head hitting with his fist, biting and trach pulling). We have a plan in place that we started about a week ago. This is part of the reason I am so nervous about school. We have been warned that the behavior may get worse before getting better and we have had five trach emergencies in three days - four of which were Ben pulling it out, the other was a bad mucus plug. Hoping this is the worst of it and it will settle down from here.

Ben's Home

Ben is home. All went well. Airway is still in bad shape - no surprise there. We weren't expecting any change with it. His eye has no long term damage, which is great. We will get cat scan results and blood work later after they have been read. Have had 20 plus OR experiences with Ben and this one was by far the smoothest and the best group of people we've had working with him. Very thankful for that.

Visit to the Operating Room

Tomorrow morning Ben has his OR visit. The main reason for the visit is to do a thorough eye exam to make sure Ben didn't suffer any permanent damage from the injury. They will also check his vision at the same time. Because putting Ben under general anesthesia is such a risk for him (and all kids with CHARGE Syndrome), we coordinated everything else he is due for to be done at the same time. We are so fortunate to be at a hospital that is willing to let us do everything at once if it is in the best interest of the patient. Those additional things will be:
MLB - scope of his airway
Cleaning of his ears
Checking of his nasal passages to make sure they are still open
Blood work for nutritional labs and thyroid function
Head cat scan to make sure the enlarged ventricles in his brain haven't gotten any worse
Going to be a busy day, but no incisions or recovery so that is the good news. Praying all goes well and the results are good.

He's BACK!

I couldn't be more thrilled to inform you that the old Ben we know and love is BACK! I attribute his previous bad behavior to the Valium rebound and then to the ADHD meds. Not to say Ben is behavior free now, just back to his previous, manageable behavior. He could probably benefit from a medicine to help with that, but I won't be starting anything any time soon after seeing the bad side effects we saw trying to find something that works for him. Just not worth it right now.

Bad Medicine?

Ben didn't do so well on the medicine he was given to help with his behavior. Actually, when the dose was upped on Friday he started doing down right horrible. In the meantime, he has developed this twitch in his shoulders that seems to be bothering him. It is kind of like a tic, but also makes me wonder if it is a seizure. We have stopped the medicine as of last night and Ben is doing much, much better today. Still has the twitch though. Going to give him some time off meds to see how he does before deciding if we want to try anything again.

Behavior Plan

Ben's behavior continued to worsen and he was really at danger of hurting himself. He was pulling out his trach daily and hitting so hard he was causing himself to bleed. He saw his Special Needs Pediatrician yesterday and after a full exam and an xray, it was determined that he had a large amount of stool backed up in him. That combined with a possible rebound effect from being sedated for so long is speculated to be the reason for his outbursts. He has been started on every other day enimas going forward to prevent this from happening again since it seems to be an ongoing issue. He has also been prescribed an ADHD med to help him recover more easily when getting upset instead of getting hung up on it. We also have a controlled sedative to give in a situation where he is out of control and we can't get him calm. Hoping this helps. Before even getting the medicine or the enima though, he ended up having a wonderful evening and had a bowel movement on his own. That is great news but makes me question starting the meds. we did anyway and will keep you updated on how Ben does. There is a chance that the ADHD medicine might not do anything.

Inspector Ben

Ben has developed a love of inspecting things. If there is a hole in something, odds are Ben has found it and spent many hours looking through it. His favorite is the teeny, tiny hole in the red block from his shape sorter. And it just cracks me up when he inspects me through the hole.
And I found these binoculars at a garage sale for 50 cents and knew they would be right up Ben's alley.

Checking out to see what I look like through these too...

Couldn't pass up a toy magnifying glass for our little inspector. This picture makes me laugh for two reasons. First, his eyeball is HUGE! Second, it captures him doing his sophisticated leg crossing that he does all the time.

Eye Update and Surgery

Ben had his final office exam and his eye appears to be healed. However, the Opthamologist feels a thorough exam under anesthesia is in order to make sure Ben didn't suffer any permanent damage or develop glaucoma due to the injury. This thorough exam is necessary because Ben can't tell us if something is different with his vision or if he has any pain. I'm also anxious to hear the results of this exam because I've been questioning if any of his recent behavior issues could be due to a change in his vision. Since Ben will also be due for his annual trach scope, we have coordinated that to be done at the same time. He will also have a handful of blood work done to make sure all is good with his nutrition, thyroid, organs, etc. And last but not least, Ben hasn't had a head CT in a long time so we are adding that too while he is under. It will be nice just to know that everything is stable with the pressure in his brain, especially since he is doing so much head hitting. All of these will take place on Wednesday, July 27.

And so the behavior problems begin...

We have been struggling with Ben's self hurt behavior (hitting his head on the floor and using his fist to hit his forehead) for a while and it has actually been affecting his ability to progress at school. Recently, it has gotten much worse. I've been warned from other CHARGE families and read posts on the CHARGE Listserv about the challenging behavior issues they face, but I had no idea the emotional tole these behaviors put on a family. I would honestly say the behavior issues are much more difficult than the medical issues of CHARGE. Seems that Ben responds best to ignoring the behavior, but for his safety and to avoid a repeat of the eye injury, we were told we had to stop the behavior. So we started putting arm restraints on him, putting him in bed and setting his visual timer for 3-minutes for a time-out. This only made matters worse to the point where he was self-hurting all the time with no improvements. He was actually getting more hits in doing this than he was from ignoring the behavior. So we are back to ignoring the behavior.
We are also going to the doctor to make sure nothing else is going on medically to cause the increase in bad behavior. A referral has also been put in for a helmet to keep him safe. And the doctor is going to discuss some medicine options that may make him less agitated.

Improving

Eye appointment went well. Pressure is still 15 - which is good. A lot of the blood has been absorbed. If all keeps on going as it has been, we have only three more critical days of sedation, keeping the head elevated, "bed rest", constant dilation of the eye, daily appointments and close watching to avoid any touching/hitting of the area. I am now starting to breathe a little easier. The possibility of Ben loosing his vision in his better eye (the eye he sees distance with) has shaken us to our core.

Eye Update - After Dr's Appointment

His eye bleeding has gone down, along with his pressure - which is now actually within normal range (15). Still having to keep him sedated and on "bed rest". Will go in tomorrow for another pressure check. Doctor was ok with Ben not wearing the metal eye shield considering we couldn't keep it on. He just needs someone sitting right next to him at all times to prevent him from rubbing, touching or doing any hitting to his eye area. Still doing both drops and the one every two hours - but now only during waking hours which is much better.

Thank you so much for all the prayers and well wishes! One day down...hopefully not too many more to go. And thank you especially to my mom for helping (and our nurses too). We couldn't be getting through this without them.

Eye Emergency

Here is a run down on the situation with Ben. Excuse any typos or mispellings...just wanted to get this out ASAP and when I had a minute of Ben sleeping.

We have no idea how Ben's eye got injured or when. Could of happened many ways because he throws toys and hits his forehead hard with his firsts when angry/frustrated - could have hit his eye instead. Anyway, I noticed on Wednesday his eye was bloodshot, but nothing too major. Yesterday it was stlll bloodshot and actually looked a little swollen. I thought maybe his allergeries were bothering him. Then around 6pm yesterday, I noticed his iris looked half filled with blood. I called our doctor on call and as I was describing it to him, I looked at Ben's eye again and now it was completely filled with blood and you couldn't even see his pupil and it seemed to be giving him a lot of pain. I won't bore you with the 6 hours in the Emergercy Room at Childrens or all the tests they had to perform. Ultimately, we were told he had a hyphema - eye trauma that causes bleeding in the eye. We had two options, admit him, put this metal cheese grater looking patch on him and keep him sedetated and follow him for the next 3-5 days to make sure pressure didn't get worse in his eye OR take him home, keep him sedated, on bed rest and put same patch on and bring him in daily for eye pressure tests, including on the weekend. The main reason they are wanting the daily tests with optho is because he can't tell us if it starts feeling worse or hurts him. And the eye patch is because they are extremely worried about him hitting his eye again and causing a rebleed, which could ultimately cause him to go blind in that eye. They know the options aren't good fpr a disabled child who doesn't understand, but they kept on stressing the severity of the situation not giving us any other options. We choose option 2 because Ben is deathly afraid of the hopstial and I didn't want to put him through that. As far as the patch, he wouldn't keep it on for even 5 seconds AFTER being on a strong dose of Valium AND it being around midnight and he was exhausted. He just kept on ripping it off. We ended up taking him home without it on and I'm committing myself, our nursing, my husband, my mom and anyone else around him to be watching him and sitting by him 24-7 to grab his arm if he tries to hit his head. He is also getting two different kinds of drops, steriod drops which have to be given every 2 hours around the clock - which even if he wore the patch, taking it off every 2 horus to apply drops isn't exactly easy. The other drops are strong dilating drops to keep his eye dilated so it doesn't have to work and cause more bleeding. And the hospital wasn't allowed to send us home with Valium so we had to find a pharmacy to fill that RX when we got home after midnight. We will get a call this morning on when we need to go to clinic to get checked out today. I'm thankful we have one day of going to clinic instead of having to wait in the Emergency Room like we will on the weekend. I'm so worried they are going to insist he be admitted once they learn he hasn't been wearing his patch. Oh, and time frame to get better is anywhere from 5 days to weeks.

HOLTER Results

Good news! Ben's HOLTER results are very similar to the HOLTER he had two years ago. Which means his heart isn't slowing down any in giving the rescue beats he needs every minute or so. We don't need to go in for a follow-up test for another year.

Sensory Room

There is a sensory room at Ben's school that he gets to go to for 15 minutes a day. It is called the Rainbow Room. And the thought is that after spending five minutes at each station, the child will be more focused to do his school work. Curious about what the Rainbow Room looks like? Below are short videos of Ben at each station. After seeing the videos, you will understand why Ben LOVES going here!
At this station, Ben is in a vibrating beanbag with these spaghetti string lights to play with.

This one, he is in a ball pit with light up balls.


And the last one, he is laying in a moon shaped chair with a weighted blanket on him playing with this light strand. And don't worry about the germs with his licking of the toys. All items in here are created to be antibacterial.

Ben's Spring School Picture

While We Wait...

Still waiting on the test results from Ben's heart HOLTER. As soon as I hear, I'll post the news...hopefully the good news. In the meantime, Ben has found entertainment in this new ball he got for Easter from his Aunt and Uncle. It has brought much joy to his life and kept him entertained for hours on end...which is nice considering all the rainy weather we have been getting.

Making Progress

Ben has started working with a PT at school (we haven't had a lot of success with physical therapy in the past) and he is starting to make progress bearing weight on his legs! He seems to do his best work when motivated and balls on the window sill did the trick this day! He would initiate standing and with help he would get up from the therapist's lap and reach for the balls. He would stand for about 10 seconds before sitting back down, which is a HUGE improvement. This will definitely help his bone density and leg strength.

Hot Ride

Grandma Deb has a "Hot Ride" at her house and Ben is a fan! It has the option to be controlled by a remote so he doesn't have to steer, which is perfect for Ben.

Behavior Issues

I've always heard that behavior is a problem for CHARGE kids and I guess I sort of pushed it to the back of my mind. I figured there was no need to worry until we had to deal with it. Unfortunately, we are now dealing with it. Ben has started to hit his head on the ground when angry and hit himself in the face. It is so difficult to deal with and we are struggling with ways to stop it. By responding, we seem to be reinforcing the behavior. By not responding, I'm worried he is going to hurt himself since his threshold for pain is so high. We are reading a book that is suppose to shed some light on why the behavior happens and I'm so hoping it will offer techniques that will help.

Cardiology

Ben had his annual Cardiology appointment and EKG this morning. Those all went well and he was given a Holter Monitor to wear home for the next 24 hours. This is so they can see his heart rythum during sleep, playtime and during anger. I'm always very nervous to hear the results of the Holter because at any given time, they could say he needs a pacemaker. I'm praying that his time isn't now, and that he can go his entire life without his heart slowling down. Should take about a week to get the results.

Needing to gain weight

Ben's weight, or lack of weight gain has been a big topic among some of Ben's doctors lately. They are extremely concerned that not only has he not gained weight but lost weight the past two years. And because he struggles so much to tolerate his formula or anything different, we are limited with what we can try. We recently tried a fatty oil called MCT oil to add calories to his daily intake. After about a week on it, he started acting extremely irritable and was having bad stomach pains followed by periods of zoning out. We stopped the oil and those symptoms improved dramatically. We are now trying to increase the calories of his formula but are doing so in three stages to make it gradual and help with Ben's chances of tolerating it. Stage one has been ok so far. I'm really keeping my fingers crossed.

Ben Signing at School

Ben is being shown pictures of the item with no words. He then signs the item and his interpreter has to guess what he is signing since she will eventually be interpreting what he is saying to hearing people. If his sign isn't exactly right, the interpreter then shows him the right way. You will also see how his trach is suctioned (done by his day nurse) and the device he is in is a stander (helps strengthen his legs and bone density).

Had a HUGE update post that I was going to include with this video; however, the computer gave an error code after including the video link at the end and I lost it all. Unfortunately I don't have the time to retype it all now nor do I remember what all I said...so a video is going to be it for now. :)

Been a while...

Boy, it's really been a while since I've posted an update.

School:
It has been going really well for Ben. His signing continues to improve every day and we are now starting the transition process to Kindergarten. We have a lot to figure out for next year. The biggest is how to transport him around school since using the wagon isn't an option and his wheelchair is just too darn heavy for me to lift in and out of the car twice a day. Converting our van to be accessible also isn't an option because that would get rid of the whole second row of seats (from what we have been told) and a caregiver needs to sit next to Ben to suction his trach and hold his trach when he gets mad and tries to pull it out. We are looking at purchasing some sort of collapsible, light weight wheelchair.

Ben has also started going to a special sensory room at school called the "Rainbow Room" for 15 minutes every day. The purpose of this room is to give him a lot of sensory input so when he returns to the classroom, he is more focused. So far, he loves going to the room but hates leaving it and cries so we haven't seen the actual results of being more focused. Like everything with Ben, it takes time before he comes around.

Medical:
Ben started vomiting again today - and he doesn't seem to be sick. I'm just worried the vomiting cycle is starting again and he can't afford to lose any weight. This weekend we will know if it continues every morning.

Nursing :
We still have our 2 day nurses and 2 night nurses. Any days they can't work, we have done ourselves and it hasn't been too many or too bad doing them.