Winter Has Been Rough

Since Ben started going to school a full day, the cold and flu season has been very rough on him. He catches bugs easily because his trach is an open airway directly to his lungs. And when he gets anything, he gets extremely sick because he has chronic lung disease, is considered failure to thrive because of his low body weight, spends most of his time on his back and doesn't walk. Keeping him out of the hospital with every bug is a struggle. We have almost everything at home that a hospital has with the exception of a cough assist machine and if he needed to get an IV for fluids. So far this winter has been especially bad. It seems Ben has been sick on and off since November with about a week in between illnesses. We have debating keeping him out of school from Nov-March for health reasons, but for now haven't gone that route because school is such an enjoyable experience for him. He is just getting over a stomach bug now and we are praying this is the last illness for him this season.

Learning Sign Language

What this mom is trying to do for those deaf is FANTASTIC! She also happens to be the mother of a little girl with CHARGE Syndrome who is deaf and has a trach (just like Ben). I encourage everyone to learn a few basic signs as well. You don't have to know many or be perfect at doing them, just attempting to communicate can make this world a little less lonely for people like my son. Here is a link with video clips of some basic words.
http://www.start-american-sign-language.com/basic-words-in-sign-language.html
And watch the video below too - it is GREAT!
http://vimeo.com/87797329

2nd Grade off to a good start

Ben's school year has been going well. The same nurse is attending with him and he also has the same interpreter. Both people have been wonderful to him and he enjoys their company. I have been very pleased with his homeroom teacher this year too. Although his Resource Room teacher has been on maternity leave since the start of the school year, there has been a long term sub and Ben doesn't seem to mind her. He is once again riding the bus and we are still working out some of the kinks with that.

We recently changed the food Ben is getting through his gtube and the times he is getting it. This is the first time in his life he is eating something other than formula. It is very exciting and I was very nervous to make the change. It was something we really felt we needed to try though because his growth has been unchanged for such a long time. He is actually only 5 lbs heavier than he was at 3 years old and is now 8. He is getting something called a blended diet now. The base of his food is his formula and to that we are adding:
Rice cereal
Olive oil
Stage 1 or 2 baby food meat
Stage 1 or 2 baby food yellow or green fruit or vegetable
Stage 1 or 2 baby food orange fruit or vegetable
It makes a really thick mixture that we use a syringe to plunge into his belly instead of letting gravity take it in like before. He gets weighed this Friday and I am hopeful he has gained some weight being on this diet for almost one month now. He doesn't seem as gaggy on this food and does seem to have more energy. He has to feel better having some substance in him now.

First day of 2nd Grade

Celebrating being 8

The highlight of Ben's birthday {for us and Ben} was the smearing of buttercream frosting all over his face. Since he can't eat anything by mouth, this was what he felt was the best use of his birthday cake. 

The Trach - Love it and hate it

After learning that Ben isn't a candidate for airway reconstruction because of his anatomy and that he will have his trach for life it has really given me some time to reflect on life with a trach...probably more related to kids that have other medical issues on top of the trach than typical kids with one. I have figured out that I really have a love/hate relation with the trach.

The trach has given us Ben and the ability to bring him home. I love it for that reason and will always be grateful. Without a trach, we know that he wouldn't be here. And I cant imagine life without Ben in it. But at the same time, I hate what all goes with having trach... for him and for us. I decided to write this to let people know how different life is when your child has medical issues and a trach. So many people have no idea and I was one of those people before we ventured down this path. After seven years of living this life, I felt it was time to share. I hope this doesn't come across as me whining or complaining, because that is not my intention. I simply want to share our life and the obstacles Ben/we face because of the trach.

Ben needs a trained caregiver at all times, even when sleeping. Because of this, we have/use home care nursing. Nursing has its goods and bads. Good- Allows us the opportunity to sleep at night. Ben can attend a typical school (even though it is in a special ed classroom) because he has a nurse that can go with him. It is nice having help during the day so I can do household chores, help taking Ben to therapy/doctor's appointments since he requires someone sitting in the back with him to suction when traveling, etc. Bad- Not all nurses are good. Actually, we have come across more bad nurses than good so when we find a good one we try all we can to keep them. Nurses have their own lives too and will help when they can but you can't rely on that to make your own plans. I miss having our house to ourselves. Nurses come and go and that is hard on Ben. He never know when a nurse is off or isn't going to be back ever. The turnaround in home care nursing is really high. 

Ben can't be left alone at all, ever because of the trach. This is hard on us and Ben. We have finally gotten to the point where we feel comfortable listening and watching him via a video monitor so he feels like he is alone playing and someone isn't watching him 24-7.

I am very envious of those moms who can take their kids somewhere by themselves. I dream of doing this one day. And maybe as he gets older, needs less suctioning and stops pulling out his trach, I will be able to. I have advanced to be able to drive him around the city we live in by myself because I know the roads/traffic well, know where I can pull off, etc. The highway is a different story!

So much of Ben's care takes two people. Difficult always needing someones help. And the care of a trach, feeding tube, bowel plans, etc is in addition to that typical care a child receives.

You get very little privacy when you have nursing in your home and your nurses need orders from a doctor to do ANYTHING. Feels like you don't have say if your child's care. Also, because Ben received state funded aid for his care, they also have to approve everything and am monitoring how we care for him. 

Having a special needs child who signs with a trach limits who can watch him when you and your husband want to go out. Because of this, we rarely get to do things together. I am lucky that my mom can watch him in addition to a nurse, but those occasions are few and far between. And having someone other than me around is hard on Ben because so many of his signs are difficult to understand. 

The constant worry of a plug, trach coming out and not being able to put back in, someone tripping while caring him, him getting sick and winding up in the hospital or even us getting sick and unable to care for him wears on you. 

I also worry about Ben's future - what is going to happen when we get older and what would happen to Ben if/when something happens to us (especially since Ben is an only child). I try not to think about this much but it pushes its way to the front of my mind more than I would like.  

And last but not least, my heart hurts for Ben and the fact that he doesn't have any friends. He is rarely invited to a party, he doesn't do play dates and all of his time is spent with adults. He gets so excited when kids are around but most kids are scared of him and won't let him get close and touch them (which is all he wants to do because he is so excited). I love that he has some friends at school and am thankful for that but wish he had more opportunities to be around other kids. 

Ben's new bed

I have been wanting to get Ben a new bed for some time and we decided it would be his birthday gift this year. He was in a toddler bed that we modified so he couldn't fall out. But the mattress he used was his original crib mattress and I felt like it wasn't very comfortable for him. Not to mention, I figured he would love some extra room. After some searching and figuring out details, we landed on a junior loft bed. Went this route instead of the custom made medical beds because 1.) I couldn't justify the $10,000 price tag those beds cost even if insurance would pay for it 2.) This gave him all the floor space under his bed to play since his room wouldn't have much with the bigger bed 3.) We could add a little rail over the open space for the ladder and wouldn't have to do anything else to ensure he was safe from falling out 4.) Easier on our backs doing Ben's care than a typical bed.  The bed came yesterday and with a few minor tweaks , we made it work for Ben. He has been loving it so much so that he hasn't wanted out of bed since it has been put together. 

Communication breakthrough

Communication for Ben is one of his biggest challenges and the root of most of his self injuring behavior. People talk about the terrible two's - a time when their child is limited in speech so they see a lot of meltdowns. Imagine a 7-year old with the inability to get what he wants because of his physical limitations, no speech, no way to make any vocal noises and a very limited sign language base/understanding. No wonder he is so frustrated. We have worked on signing Ben's whole life and he has definitely been improving. But getting spontaneous signs is hard and getting him to combine more than one sign together is even harder. With that being said, Ben just signed at school ALL ON HIS OWN " want more drum"!!!! This is HUGE for him!!! 

Demo wheelchair

Ben has shown an interest in gaining more independence with his mobility outside of the house so a demo wheelchair was brought in to school today from Childrens. It worked so well and Ben did GREAT! Attached is a video of him in it for the first time and we were so impressed b/c it was like he knew what to do when his hands were put on the wheels! We are now starting the process of trying to get him a wheelchair like this. It is going to be a fight with insurance b/c he isn't eligible for a new chair yet, but we think it is worth the fight b/c his needs have changed and this is really the right chair for him now. Wish us luck!! 

Note: He is super excited about being in the chair in the beginning. That is his happy dance he is doing. :)

Family Pics

My sister in law took some family pics for us. So many of them turned out great, but had to share the ongoing theme during the photo shoot - Ben making faces. 

Things have been going well

I am happy to report that everything in Ben's world has been going well!

School has been wonderful for him this year. I am very pleased that we moved him to Western Row Elementary School (our public 2-3 grade school). Even though he is only in first grade, he can go here for 3 years and they have a Resource Room (where he spends most of his day) that is a good fit for him. I am very thankful for his school team this year. They really seem to "get Ben", know when to push him and when to let him take a break. He has a few different aids that work with him through the day, his private nurse, a one on one interpreter and a special education teacher. He also spends time with the typical kids in his homeroom class, goes to art, music, science (where he gets to play with therapy dogs), and recess. Overall, he has adjusted really well to the 9-4 school day. 

Nursing has been going well too. We have the same nurse going to school with Ben every Monday through Friday and she is amazing with him! We have two night nurses and both are also very good with Ben, reliable and really seem to care about Ben. 

We have just started the process of getting our first floor bathroom modified for Ben - we were hoping to have it done by now but had some issues with the first contractor so we started the bidding process all over and finally found someone we feel really comfortable with. We are getting a roll-in shower added to our half bath. I am so excited to see the finished product. It will be so nice to give Ben baths that way instead of getting baths in the kitchen sink.  

Ben is losing his baby teeth... FINALLY! He lost one on the bottom center about a month ago and the one next to it is loose now. The wiggly teeth is making him a little more irritable than normal so I am anxious to see it come out. I was hoping he would lose his two front teeth in time for Christmas so we can swing "All I Want For Christmas Is My Two Front Teeth". 

First day of 1st Grade

 Waiting for the bus with Nurse Bobbie

 Praying for a good first day

 Off he goes!

On the bus

Where has the time gone?

I can't believe it has been so long since I've posted an update! I sit here, the night before the first day of school and wonder where the summer went. I do have to admit that when things are good with Ben, I don't post as often. And things have been better than good...they have been GREAT!

Ben's behavior problems have been practically non-existent all summer. I don't know if it is because he is out of school, if the medicine he is now on makes everything less stressful for him or if it is related to a new therapy he is getting called Cranial Sacral; but whatever it is, I'll take it! Usually summer drags on and he gets so bored. This year it flew by and he never seemed bored. He enjoyed walks, laying on a blanket in the yard, running errands with us, going to the pool and doing his therapeutic horseback riding.

Tomorrow morning he starts 1st grade at a new school with an entirely new school team. This was something we wanted because last year was so difficult and upsetting for him. Fresh start, fresh people, fresh building. And so far, I have been very impressed with everyone I have met on his new team. They seem excited to have him and willing to try and make it successful and enjoyable for him. I am anxious to see how he does - especially considering he has never been to school for a whole day before (this year he gets picked up at 8:45 am and gets home at 4:08). Talk about a full day!

I promise to post a first day picture tomorrow.

Feeling defeated, but HUGE Progress

Ben had his annual airway scope, ear cleaning, nasal scope and blood work yesterday. All went well and Ben is home doing great. The blood work results that have come back so far have been normal, which is a relief. We are however, feeling defeated after learning Ben's airway is still inflamed and nothing can be done to help. The inflammation has to be down to do the airway reconstruction and that has to happen before the trach can come out. His scope pictures were given to two other ENT's in the group at Cincinnati Children's for additional opinions. We also wanted them to compare these pictures to the pictures taken over the past 7 years to see if any slight improvement has been occurring. We were told that his airway is very typical to the airways of other CHARGE kids needing reconstruction and we just had to give it more time and let him grow before anything can be done. Doing something now could cause severe scarring that would make future surgeries unsuccessful and ruin any chance of getting his trach out in the future. As hard as it is to just wait, it looks like that is our only option. Guess we just have to get use to Ben taking his trach out 10-20 times a day (yes, that is his new hobby). 

Speaking of just letting Ben grow, that is another challenge. His weight is back down to 32 lbs. He hasn't gained any weight in 3 years. His is getting taller and is now 44", but needs to have his weight increase to thrive. We are going to try increasing his calories again. 

On a good note, Ben's physical accomplishments has been amazing lately. In the past month, he has progressed more than he has in the past year. It is so exciting to watch. He is able to pull to stand from a chair to reach something on a short table, he gets into crawling with his head down and rocks, he can push himself on a ride-on toy and turns himself directions, he is able to scoot up onto the first step in our house and lay on it without help, and he can put his feet on the pedals of a tricycle and peddle in short bursts. 

Waiting in same day surgery

Kindergarten spring school photo

Bench

Finding a nice bench on a walk around our neighborhood was the highlight of my day yesterday. Ben enjoyed sitting on it, laying on it and just taking in the nice day with me. Moments like this make me realize how much my little guy is growing up and getting stronger. He would have never been able to sit like this a few years ago. 

Easter Egg Hunt

My brother and sister-in-law hosted an Easter Brunch. It was Ben's first official Egg Hunt. He enjoyed finding the first few eggs, then decided hanging out in the grass was more fun :)

Like us

Ben is going through the phase where he wants to do everything we are doing. Now when we go out to eat, he wants to be eating too. Ben still can't eat or drink anything by mouth, but he copies us when we drink and is trying to take bites of food like us. It is so sweet to see, but also breaks my heart. If only he had the muscles and coordination to do something with the food. Maybe now is a good time to start tastes of baby food again. Here is a picture of Ben copying us drinking from a straw. All he did was put the straw in his mouth, but he really mastered the art of looking like he was drinking.

Looking up

Seems everything is starting to look up.

We asked another doctor to manage Ben's behavior medicine. She has more experience with CHARGE and knows what seems to work for those kids. She started him on something new and so far, so good. We are keeping our fingers crossed that he doesn't start back into his usual cycle (great at first on the new med, then a downward spiral). The medicine he is on now is called Naltrexone. Anyone have any experience with that? So far, the only bad side effect we are seeing on it is trouble sleeping and restlessness. With time, they say that should improve.

School is going so much better. His days aren't as bad and some are even good. He still prefers to be home, but a definite improvement.

The new day nurse who we really loved agreed to take on our case permanently. Couldn't be more thrilled about that. She has a big heart, is wonderful with Ben, advocates for him while he is at school, and has been picking up sign language really fast. We are very fortunate to have her.

No new updates on the Home Care Waiver front.