Whoops

Long time no see. Sorry about that. Life's been busy here like everywhere. I'm not even going to attempt to chronicle the rollercoaster of the last few months. Let's just say there was much more fighting with the school district, trying to get Little Man what he needs, and with Beans' school trying to get them to understand what having a chronic illness is. It ultimately came down to the district here is not willing to do the things needed to keep them safe and help them in the areas they need help. So I did something (again) that I said I'd never do - pulled them from school completely and we're a home schooling family now. Yikes!

Sure never thought we'd be here. We're only doing this short term until the end of the school year. Then we'll get them setup in the next district after we move to Connecticut this summer. Though its something I initially dreaded, the difference in both the kids is amazing. Beans is more happy and giggly than I've ever seen him. He's put on 5 pounds!!! since I withdrew him. I don't know if there was something environmental going on there that was causing problems, if it was just the stress of being in the classroom or what, but he's looking great! Little Man's learning comes and goes, he has trouble retaining what he's learned. Using hands on materials where he can see directly what you're trying to accomplish has helped him learn some skills we've been working on for years. I wouldn't say they're mastered yet, but they're starting.

Health wise things are a bit backwards of where they usually are. Beans is actually the stable one right now! Growing and gaining weight, no food is terrible on the mind, but so good on his body. I constantly think what a cruel disease eosinophilic disorders are: you feel terrible all the time so you never want to eat, but take away the food and you feel good and want to eat but can't. He sees the GI next month and we're hoping he can start food trials to find at least something he can safely eat.

Little Man is the iffy one right now. Emotionally he's doing very, very well. Health wise, not so much. He's lost 15 pounds since October. First it was gradual and then he lost a huge chunk in a matter of a couple weeks. He refused to eat and was having terrible tummy pains. The pediatrician double his Prevacid and he sees the GI early next month on the same day as Beans. He is back to eating and has put back on a couple pounds, but still has a lot of trouble with pain and only eats minimally. We're supplementing him with Pediasure until the GI appointment because he simply can't lose any more weight.


Beans will definitely be having an endoscopy to check the status of his eosinophilic esophagitis in May and Little Man is likely facing one as well, possibly even other testing to get his tummy feeling better again. Little Man may be facing more stomach surgery or the GI may have other ideas. We'll just have to see. Ideally we can manage it with meds.

I graduate from college on April 30th, May 5th we head to Orlando for the GI appointments, then we'll hopefully be making our big move in June, July 1 at the latest. I need to leave enough time between the GI appointment and when we move for testing, procedures, and all that fun stuff that needs to be in order before we transfer over to new doctors.

In the morning we're signing both the kids up for soccer! They're so excited. It's iffy whether Little Man will be able to handle it, but we'll never know if we don't try so we're going to give it a whirl. :D

2 Years! Wow!

Today I realized that Beans has been on g-tube (stomach) feeds for 2 years now! Just over two years ago, he was admitted to Arnold Palmer hospital in Orlando. He was placed on IV fluids and j feeds (intestine) were stopped. It was time to determine if he needed a separate J tube (as opposed to keeping the GJ he'd had for 5 years which has to be replaced in the hospital) or if he could tolerate G feeds. All bets were on him getting the separate J tube, but he shocked us all - doctors included!When he entered the hospital, he was on his feeding pump 22 hours a day. He had to carry around his backpack everywhere he went and the vast majority of time he had to have an additional bag hanging off that allowed his stomach contents to "vent."
Now granted, the GJ was a huge improvement over the NJ. He's had some sort of feeding tube since he was 2. He had the G tube for a year, then the GJ tube for 4 years, he lost the GJ shortly before we moved from Utah to Florida due to multiple resistant infections. During the few months the tube was out to allow his stomach to heal, he had the NJ. This tube was TORTURE. Placement was unbearable and could take over 2 hours, during which Beans would be crying, gagging and vomiting. The doctors would feed the tube down his nose, down his throat and esophagus, through his stomach and out into his intestines. Then they'd feed it quite a ways into his intestines. The hardest part was getting it out of his stomach. Those were some tough times. People staring, him accidentally pulling it out, and starting a new school in a new state with a tube sticking out of your nose certainly didn't make it any easier. But now, he gets fed every 3 hours! If his tube gets pulled out, I can simply replace it at home (as long as we notice right away). No tube sticking out of his nose, no backpack to lug around, no bag of yuck hanging off him, not even a dangling tube to get caught. These are the great times! As my grandmother and I constantly remind each other, you just don't know how great the good times are unless you've had the hard times. For this I am thankful.

Wow! Just Wow!

Today was our second day of Little Man being on homebound schooling. It will still take time for the district to get setup for the teacher to come to our house, but in the meantime I don't want him to think he just gets to play so we've been working hard.

The amazing thing is seeing how well he's doing emotionally/mental health wise. O.M.G. This child is HAPPY, COOPERATIVE, and working very hard. We're following a similar system as he used at school, but customized to Little Man. Today he worked on telling time (7 right out of 9!) and cursive letter 'a' and 'A.' Handwriting/fine motor is a huge struggle for him so at first we're just working on tracing. He did the best I've ever seen. I'm not a teacher, and really never want to be one, but if just me implementing things his therapists and specialists have told me over the years makes such a big difference, imagine what he'll do once he's in school with a qualified teacher and in the right placement. He's going to fly!! Watch out world - here he comes! :D

Wow. Never Say Never.

When Little Man was a little baby and had some health issues, I used to say, "Health issues? I can handle this. Please just no developmental issues." Then he was diagnosed developmentally delayed. Okay. I can handle developmental delay, just please no autism, I could never handle that. You can guess what came next. Yup, an autism diagnosis. I could go on, but you get the point.

This year school has been hell for my little sweetie. He's in a self-contained special ed class (meaning only special ed kids) and still....failing. This is the first year he's ever really noticed his grades and what he sees is depressing. The biggest lesson he's learned? Work your hardest so you can still get an F. Ouch. His IEP meeting was a disaster almost a month ago with such phrases as "he needs to get used to failing" and "we're making all the accommodations and modifications possible, there's nothing more we can do" and "if we give him academic work on his level then you're (meaning me) giving up on him." Despite losing progress in both math and reading, they insisted on frustrating him with work he can't yet attain and then punishing him when he didn't complete it on time.

As his frustrations at school have grown, his mental state has declined. Drastically. In a kid who already has a fragile emotional state due to many factors, this sent him over the edge. He started having visual and auditory hallucinations, lost tolerance for things such as Beans having the television on, lost interest in his toys and started wetting the bed again. Aggressive behavior we haven't seen in a very long time came back, emotional swings from laughing to hysterics and back again in moments. In short, I feel like my son is being sucked away a little at a time.

Our only hope was today's appointment with his psychiatrist and developmental pediatrician. I have been pleading for the past month that they would have some answer. I got all the paperwork together - his IEP, samples of classroom work, videos of him doing his best to do his homework, my list of his current issues and begging for help from the school, and perhaps most important of all - a letter Little Man himself dictated to his doctors. While the contents of the letter are private, the insight it provided into the frustration and hurt my little guy has been going through is shocking.

Today we finally, finally got help. These doctors know Little Man very well and their care for him is quite evident. They reviewed all the information before coming into the room with us, paying special attention to his letter. Our normal 15-minute appointment took an hour and 15 minutes. Tough discussions were had and tough decisions were made.

The most drastic change is Little Man is pulled out of school and placed on hospital-homebound effective immediately. This means I will be responsible for most of his schooling, but the district will be responsible for sending a teacher out to oversee it. I'm not sure exactly how this works as I am very anti-homeschool (hence the never say never title), but he cannot take one more day in his current placement.

Over the next couple of months he will undergo more testing, specifically redoing the psychoacademic testing he had done two years ago (the developmental ped is calling in a personal favor to have this redone) as he has not made the progress they expected and are highly suspicious of a degeneration process (at worst) or confirmation of no progress (at best). Once they have those results they will be pushing to make an exception and the psychiatrist will be calling in a personal favor to get him into another neurologist or a neuropsychiatrist as they are certain there is an underlying medical process causing these issues and we desperately need to find it. They also once again confirmed his seizures even though we don't outwardly see them they seem to be affecting his brain and learning.

When we finally have all that information we will do what it takes to get him into the proper educational placement. One where he can learn, but is not stressed to his breaking point. Obviously this is a huge change, but I am desperately hoping this will give me back my little boy who was so stable, interactive and happy over the summer.

Ask Hard Questions & You Get Hard Answers

To say Little Man has been struggling at school is an understatement. :( While his behavior has been up and down, his academics are still waiting for an upswing. F after F after F keep coming home. No matter how hard he tries, the result is the same. I've spent a lot of time working with him at home and he's just not grasping things. But then he's missing out on the fun things at school because he's not able to get his work done. Something has to change.

Today I spent an hour on the phone with the education advocate discussing just what that change needs to be. I've given her copies of his IEP from last year, from the year before, copies of his psychoacademic testing (cognitive and academic), samples of his work and reports from the school. It was time to ask the hard question - will he ever catch up? Are we doing the best thing for him by pushing so hard?

I knew in my heart what the answer would be. If from the age of 3 1/2 to the age of 9 1/2 he only gained 18 months of receptive language (from 18 months to 3 years), if he still struggles writing a decent sentence at 11, if he can't sit and read a picture book to himself without lots of help, I suppose the answer is there. But he does have some amazing skills. Put him in front of a computer and he can make it do things you never dreamed it could do.

Don't get me wrong, we're in no way giving up on him. Just trying to put him in an environment where he can turn those amazing splinter skills into skills that will help him (hopefully) be able to live independently one day. Find something he can succeed at and feel some sense of accomplishment instead of constantly being shot down. No final decisions will be made until the end of the month, if then. Obviously this is a big decision and one that won't be made for sure until everything has been taken into consideration.

He's an amazing kid. He is so smart in his own way. He's just wired for a different world. I am so fortunate to be his mom. By having that privilege, it's my duty to help him find his way - wherever that may lead us.

Amazing, Simply Amazing

I'm pretty sure that Saturday was the most amazing day my kids have had in a very long time. After months of really hard news, a lot of struggles and disappointments, thanks to the Starlight Foundation, we had a day full of smiles, wonder and simply being a kid.

Starlight provided us awesome tickets to a Jacksonville Suns baseball game. Jax is a little over three hours from here so I decided to make a day of it. I surprised them with a trip to the Jacksonville Zoo before the game. We got all the way to Jax and into the parking lot of the zoo before they had any clue we were doing anything but the game. They read the sign "Jack...son...ville...zoo...and...gardens" then a pause, then "JACKSONVILLE ZOO AND GARDENS!!!!" I so got them good :D
The pictures speak for themselves, it was amazing. From seeing the elephants, to feeding sting rays, to riding the train, to feeding giraffes, we'll definitely be making a return trip (though maybe we'll wait for a little cooler weather ;)

After the zoo we headed to the ballpark. My kids have never been to a game before (*blushing*) so this was an entirely new and exciting experience. Starlight got us amazing seats, refreshments, and my kids really enjoyed being with other kids with chronic health conditions. When it was time for Beans' tube feed, there were no stares, no comments, it was just normal.

Perhaps the highlight of the whole day was when the kids got to hang out in the Suns' dugout right before the game, run out the field with the players and stand with them during the national anthem! I was trying to choke back tears the whole time, seeing my kids out on the field, knowing they were having the time of their lives. What an amazing moment!

Here are the kids running back to the seats. Beans is just to the right of middle in a blue shirt, Little Man is in purple but pretty hidden by the kid in yellow. Thank you Starlight! Thank you for giving my boys some happiness. Thank you for giving them time to be kids. Thank you!

Are You Ready for This?

Due to a major snafu with the transportation department at the kids' school district, I transported them both myself today (not usually an option due to conflicting school schedules - two schools that both start and end at the same time, miles apart, does not work yet. Once I get that cloning machine invented it'll be doable. ;). The cool part about this? Well, I got to talk directly to Little Man's teacher both before and after school. I can't stress enough how important having a good relationship with my kids' teachers has been. Call me a control freak, but I like to know about things going on in the classroom - big and little. I like them knowing they can call over any question or problem. I like them knowing that I care very deeply about these kids, will fight for them, stand up for them, and cheer them on at every step.

This morning Little Man's teacher was very frustrated at the sudden issue in busing yesterday that put him home at 5:15! School gets out at 3:15 so that's 2 HOURS on the bus. That's ridiculous for any kid. Add in autism, seizures and emotional issues and it's truly amazing he made it home without a problem. By having a good relationship with his teacher I was able to get more information about the situation and I'm making progress getting the situation resolved.

I have to admit though, I'm getting awfully tired of being "that" mom. All I want is my kids to go to school and back home safely every day while being properly cared for. That's all. I'm not stuck on specifics, but they have to be safe priority number one.

Despite those frustrations, by picking up Little Man I got an amazing report today. He did not miss a single point today which means he was paying attention and doing his work every time the timer went off - HUGE, HUGE, HUGE. Mrs. M also told me that the teacher who he had the big incident with on the third day of school, Mrs. P, has developed a close bond with him. Mrs. P is a regular ed third grade teacher. Since the meltdown, she has come to check on him every day. Today she was so proud of how well he kept himself together after the big bus snafu that she gave him a Golden Arrow Award. This is very special. He gets to eat lunch up on the stage on Friday, got a special award and some other things. His teacher and I are both so proud of him, and he's SO proud of himself.

Keep up the good work Little Man!!! You've come so far and have even more great things to come!