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!

The Most Important Thing

Little Man did this at school today and it's just too precious not to share.
The most important thing about me is that I protect my friends.
I like friend
and Mrs. M
I have Wii, PS2, DS
But the most important thing about me is that I protect my friend.

Isn't that the most precious thing ever??? I sure love this kid!

A New Week

Sunday, the start of a new week. Last week was pretty successful as far as weeks go. We got a lot accomplished between Beans's IEP meeting, his real first day of third grade, and the start of my semester. It's a bit hard on Beans getting into the flow of things again, especially missing that all important first week with his friends. He had a couple days of tears after he got home on Tuesday and Wednesday, but he did really awesome at school. Thursday he had no tears, but came home with a fever. :( He stopped tolerating his feeds, was congested, coughing and miserable. School was out Friday, but he's going again tomorrow. Hopefully he can make it longer before getting sick this time.

Little Man, on the other hand, did an amazing "first" on Thursday. He did his homework - by himself and without being told - while on the bus coming home!!! Now, to understand how HUGE this is you have to understand that he has an incredibly short attention span, very, very delayed fine motor skills so writing is beyond difficult, and has never been self-motivated to do anything unrelated to an obsession of his in his life. So when he told me he'd already completed his homework I'm embarrassed to admit I didn't believe him. I checked it out and sure enough - not only had he completed it, but he did an awesome job! Is this a sign he's maturing? Is the higher dose of seizure meds making a difference? I don't know but I am one proud mama! :D

Yesterday we hung around the house, letting Beans rest and enjoying our time together...while I made sure the washing machine got a good workout. ;) Then today we went with Grandma J to a bird expo. We were running early so we stopped at Sonic and picked up chicken for Little Man and I to share and Beans had a favorite EOS lunch - Sonic ice with a side of Nintendo DSi. :D


The bird expo was really fun. The boys especially enjoyed the couple week old parrots. They were ugly, but so cute. Both of them had amazing behavior, even with all the brightly colored toys, lots of people and a fair amount of noise. Beans reacted to something while we were there and ended up congested and not feeling fabulous, but still had a great time.

Little Man was proud to get a bird tattoo. He was so happy with it I let him keep it on until morning when we'll have to wash it off for school. Hopefully we don't have too many tears when the time comes.


Now the little ones are tucked safely in bed, sound asleep. Hopefully having wonderful dreams. Good night. :)

...And He's Back!

Think he was a little happy to start school?

He was totally exhausted when he got home and had a few tears, but he'll get used to it. :D

Your Attention Please

I am proud to announce that Beans will be returning to school in the morning!!! We just got home from my fourth meeting with the school administration, trying to make sure he would fully be taken care of, be safe, and have every opportunity the other students had. It's been a long battle, but I fought the dragon and WON!!!

Tomorrow my son will go to school with the other kids, get fed in a room close to his class during transition times so he won't miss academics, have several people trained in his medical needs including use of his Epipen and administering Benadryl via the g-tube, will get to fully and safely participate in field trips .... and .... yes, he WILL be able to participate in PE and recess!!!!

I am so glad the advocate and his complex care nurse were able to attend. I think it helped a lot with everyone knowing I wasn't standing on my own and had backing. The compliments and apologies as we finished up didn't hurt either. ;)

Tonight we celebrate a step back into normalcy for Beans!!! What a happy day!

Don't Worry, Be Happy

As any parent, especially a parent of children with special needs, I've certainly spent my fair share of time worrying. Should I or shouldn't I allow the doctors to do this surgery? What about school placement? Will allowing them to diagnose him with autism label him for life? Will he make friends? Will he be happy? Will he be able to live on his own? Everyone can relate to these feelings on some level.

A couple years ago it dawned on me. No matter how much I worry and stress over things, it never changes the outcome. What??? I can't worry us into the right decision? I can't change the facts if I just stress over it enough? You mean to tell me, I'm not in control???

Since then I've been trying really hard to live by the motto "if you can't change it, worrying won't help." If you can do something about it - fabulous! Do something! But there are so many things in life that are out of our control, and for those things we've just got to let it go. Find something positive in the situation and focus solely on that. Besides, many times I've found that you're worrying over the wrong thing anyways.

Of course, I'm far from perfect at this. Before this school year started I was so nervous about Little Man starting school. He was moving from one self-contained setting to another and I was afraid his needs wouldn't be met.

As for Beans, I was pretty sure things would go easily. He's been at the same school for two years, this shouldn't have been a big deal. I worried myself sick over Little Man. I had dreams of getting him back into his school in Utah, nightmares about all the things that could happen, so many fears that I let take hold.And what came of it? NOTHING! Little Man seems to be in a beautiful placement, his teacher understands him and is meeting him on his level. The occupational therapist already has big plans to accommodate him and work with him. Even the transition wasn't as bad as I'd feared.

And then of course is Beans. Tomorrow will be his EIGHTH day out of school for the year...guess how many days school has been in session. Yup, eight. Is he sick? Nope! The school is still not prepared to care for him. Tomorrow will be our third meeting in hopes of getting this resolved. That doesn't include the letters and phone calls with the district administration, school administration and his teachers. Tomorrow I'm better prepared than ever, instead of worrying I'm doing everything I can to be ready. I have letters from his pediatrician, his complex care nurse and an education advocate will be attending with me. I am determined we will get this resolved and get Beans back to what he does best - being a kid.

The next time life has us stressed out, we need to take a step back, take a deep breath and think - is there really anything I can do to change this? If the answer is yes, get up and do it. If the answer is no, we've got to let go. Look at our child's smile, find our strength and peace and just keep going on.

August = Diagnosis Month

Yes, today we added another item to the list of things my little guys deal with. Today Little Man's psychiatrist and developmental ped were able to confirm the diagnosis of seizures. It's long been suspected, and apparently 30% of kids with an autism spectrum disorder will start having them by the time they hit adolescence, so it wasn't a big shock. The good news is his don't seem to be too big right now, the bus incident on Wednesday was his biggest one yet and it was really small considering. It does explain why he's had such a drastic increase in development, decrease in frustrations (slurred speech, clumsiness, etc) and more stability in general since starting Trileptal in April. They upped his dose today to 450 mg twice daily (from 300 mg twice daily) and if things continue going well we're hoping to try getting him off some of his other medications, especially the Abilify.

The current thinking is that his seizures are not the "tv" type seizures, in fact he doesn't shake at all. His seem to be more of a short-circuit in his brain - he either blanks out, passes out or becomes disoriented and aggressive. If we can get his seizures under good control we can start weaning off the other psychiatric meds. How great would that be?

As for Beans, I'm still dealing with the school. This is getting beyond ridiculous. He's already missed seven days of school! I have yet another meeting on Monday at 3:45 and this time a special needs advocate and his CMS nurse (oversees all his specialists and care) will be attending with me. I'm really hoping he can get to school soon, especially since my classes start Monday and as things are now, he's going to get really well acquainted with the hallways outside my classrooms. He's not ready for college lol, he needs to be in third grade with his friends, learning and playing and being a kid.

Scary Call Today

A little after four this afternoon, my phone rang with a local cell number. "Ms. R?" asks the voice on the other end. "Yes," I reply. "This is Sheriff W. We have Little Man here and first of all, he's fine." Of course he's fine, I think, he just had a meltdown at school. Then I hear the word ambulance. What?!? Ambulance? Little Man??? What happened???

Apparently he either had some sort of seizure or passed out on the bus. He fell from his seat and the aide found him on the floorboard. At first he was unresponsive, then when he finally did rouse he was disoriented. The bus driver called 911 and the ambulance and sheriff raced to meet the bus. By the time the paramedics got there he was alert, oriented and stable.

He's not great at describing things that happen, especially things like this, but from the best I can tell he doesn't remember falling asleep, but does remember waking on the floor unsure how he got there. He doesn't remember events right before it happened (the drive from school or dropping off the first couple of kids), but remembers them holding his shoulders and helping him walk off the bus.

Friday he sees the psychiatrist and developmental pediatrician who have been treating his suspected seizures. The psych is only in town once a month, so this is probably the best time it could have happened if it had to. After getting a dose of Klonopin early and resting, he's back to normal tonight and ate a good dinner. Hopefully he just needs an adjustment to his seizure meds or something easy.

I'm not sure exactly what happened, but I do know that was possibly the scariest call I've ever had. I'm so glad he's okay.

IEP Update

Today we had the big meeting with the district and Beans' school administration regarding his care at school this year. Overall I suppose it went fairly well. All the normal IEP attendees were present, as well as the director of special ed for the district. We went over the concerns I addressed in my email one by one. The meeting was two hour long so I won't go into a lot of detail.

We worked out his tube feedings so that he won't miss much class time at all and will be fed by the ESE parapro who has been feeding him for two years, but won't go to the ESE setting to do so. :D He is still not able to attend school, and we will have to have another meeting before he can. The district needs a letter from his doctor specifying every allergy (all foods, most insect stings, latex and other unknowns), signs of a reaction, when to take what action (Epipen, Benadryl, inhaler), what heat range he can tolerate, signs he's overheating, treatment, what times he has to be fed at, how much, signs he needs to be vented, as well as about a million other specific things. The funny thing is, I have to compile all this information (his pediatrician knows the general medical info of course, but not the Beans specific info), send it to the doctor for his signature, then he'll send it back for me to give to the school. I understand they need the M.D. after it all, but it would have been nice to know this BEFORE school started.

Once that's all worked out we'll hold yet another meeting to work out final details, train (again) the staff that will be caring for him, and hopefully get him back to school soon. My classes start on Monday so I'm really hoping to have this resolved this week. Cross your fingers.

I got home from Beans' meeting to a phone call from Little Man's school. Apparently he totally freaked out and caused a big scene at school and I had to go pick him up. In the future he'll do an office time out and then return to class, but since they knew I was home and it was only the third day they let him come home today. He's been fine since he got home, and didn't even ask to do the privileges he lost (EVERYTHING). Tomorrow's a new day, and on his teacher's advice, if he makes his day tomorrow he will get his home privileges accordingly.

All in the day of the life of our family. :)

First Day of School aka Another Misadventure

Thursday was the big day - Beans started 3rd grade in a full inclusion setting and Little Man started 4th grade in his self-contained (special ed) classroom. We prepared as much as possible. I wrote a letter explaining where Little Man is at academically and developmentally to his teacher, including the wonderful essay he wrote over the summer "Little Man's View on Himself." I wrote a letter to Beans' teachers explaining his medical condition and the care he requires. I emailed his principal towards the end of July outlining my concerns.

Tuesday the kids' had their Open Houses. Little Man was so excited to see his teacher. He had a fabulous time and didn't want to leave. Next we went to Beans' school and found out he has the teacher I was hoping for. He ran into the classroom and gave her a big hug. We discussed a bit of what his care would entail and they assured me it wasn't a big deal.Wednesday we had the big Plan of Care meeting for Beans. This is where everyone involved in his care - teachers, guidance counselor, coach, district nurse, principal, etc - and I all meet to discuss every aspect. This includes who will feed him and when, PE, recess, signs he's in trouble, what to do in different circumstances. I brought a book I'd prepared with all of his information, a list of questions and handouts for each staff member who will have contact with him.
The meeting went fabulous! I left knowing Beans would be in great hands, that he'd be able to have every opportunity the other kids have, but that he would participate safely with the correct precautions and accommodations in place.
Thursday morning arrived and Little Man was beyond excited. I helped him get ready and he happily bounced onto the bus and off to school. Beans woke pretty apprehensive and didn't seem to be feeling great. I chalked it up to first day of school jitters and sent him on his way. You can tell he's not too happy about it. :(

I arrived at Bean's school for his 10:00 feeding to show his teachers how to feed him one last time. It's never a good sign when the teacher asks if you can step into the hall to talk. I was told that after I had left the day before, the principal decided it would be too upsetting to the other students for Beans to be fed in the back of the classroom in the office area. The teacher also said something about liability in case something happened. Now, if this was his first time being fed at school, or even first time at this school I could understand this, but this is Beans' third year at this school and he's always been fed by a teacher or parapro.

I took him to the clinic to be fed as I had no choice then. I told the receptionist at the front desk that I needed to see the principal IMMEDIATELY after I was done with the feed. Things were about to go from disappointing to pretty dang bad.

The principal and I went into her office and she told a completely different story about why Beans could not be fed as we agreed upon and presented an alternate plan which would make him miss 20 minutes of math and 20 minutes of reading every day. In addition to that, she said that she wasn't comfortable after all with him participating in either recess or PE. The only thing that didn't change was that he was going to have an alternate activity while his class was at lunch, but it had never been decided what that activity was. So basically in the course of a few minutes, Beans went from having a very typical day at school to missing half his academic time, recess, PE and lunch (which is unavoidable). This momma was pissed! Absolutely unacceptable. After going round and round and neither of us being willing to make any concessions, I told her that I wasn't willing to discuss this further at that time, that I was taking Beans and would be in contact with her after I'd had time to think things over.

Honestly, I think that meeting with the principal was the most upsetting meeting I've EVER had. EVER. Not only was everything we agreed upon blown to pieces, my son wasn't being allowed any of the things kids look forward to at school, he was going to miss almost half his academic time every single day, and then to top it off she made two unforgettable comments. She said that the other kids would be scared by Beans. What??? After two years, they're suddenly going to be scared of him? He's something to be scared of??? WTH?!? Then she kept repeating, "I know you want him to be a normal kid, but....." I left, with Beans in hand, literally sick.

Monday I sat and listened to his doctor confirm he had a condition with no cure that had been plainly diagnosable since he was two years and he'd suffered for years for no reason. Then I had to watch him tell Beans that he can't eat anything for at least a year. Then for the principal to tell me the couple of things Beans was actually looking forward to - being a normal kid and doing recess and PE with his friends - were being ripped away too was just more than I could handle.

Thanks to my wonderful EOS and Special Needs friends and family, mostly on Facebook, along with my real life family, I armed myself with the law. The law that says my son can not be discriminated against. Cannot be forced to special ed when he can be safely taken care of in a regular classroom. That the school must provide the appropriate accommodations and safety precautions to keep him safe.

Thursday night, since I couldn't sleep anyways, I emailed both his teachers, the principal, assistant principal, guidance counselor, director of special ed for the district and the district superintendent. I outlined the care Beans required at school, the principal's proposed plan and why each part of it weren't acceptable and illegal. I explained what needed to happen - immediately - and that he won't be returning to school until an acceptable plan was in place with all the appropriate accommodations.

Friday morning, first thing, the principal called me and requested an IEP meeting for Monday morning. For those unfamiliar with the special education process, you NEVER get an IEP meeting the next day. I have contacted Beans' pediatrician and they are putting together a letter for me. I have also contacted an advocacy group. He WILL have every opportunity afforded to every other student. I will attend the meeting armed with the law. I honestly am not sure what to expect, but I do know that I will not send Beans back to school until things are signed for and legal in his IEP. No more of this verbal agreement. If they refuse to provide what he needs, I will take this to the next level.

This would be unacceptable in any case. There is nothing I can do about his EE, nothing I can do about him not eating, but there is plenty I can do to make sure he is treated with the same respect as every other child at school. I will do whatever it takes. What. Ever.

As for Little Man, he had a hard transition home after his first day, but his second day was fabulous! He had a perfect day of being on task. He came home super happy, was so pleasant to be around, and has continued with the most amazing attitude. He even got out a notebook and wrote about "My Mother" (me) and asked me to write a math quiz for him. Think he's excited?? I am so thrilled for him. If his year continues this way, it will be wonderful.

It's Official - Another, Possibly THE Diagnosis

Well, today was the much awaited GI appointment for Beans. As with everything in life, there was good news and bad news. The good? He's 54 pounds (10-15%) and 51 1/2 inches (25-50%)!! Height and weight are great. More good news you ask? Sure, here it is - we now know the reason Beans has had so many issues. The reason that no matter how much food he ate by mouth, he would never gain - it was like negative calories. The reason for his low endurance, leg pains, headaches, chest pain, and stomach pain. The reason for the dark circles under his eyes and the redness around them. The reason for his horrible, bleeding diaper rashes for so long. The reason for his asthma. Even possibly/probably the reason for his subglottic stenosis (airway abnormality) and chronic ear infections. (Though the last two could be caused by his genetic disorder, there's not enough research on either to know for sure.) Drum roll please......Beans has Eosinophilic Esophagitis.

What in the world is Eosinophilic Esophagitis? It's a rare (of course, this is Beans we're talking about lol) disorder characterized by the infiltration of a large number of eosinophils, a type of white blood cell, in the esophagus. Eosinophils are an important part of the immune system, helping us fight off certain types of infections, such as parasites. So basically, Beans' immune system sees food (EVERY food so far, even the most generic, generally safe foods such as watermelon) as an invader that must be fought off and destroyed. In attacking the food, it also damages his esophagus and reeks havoc on his entire body. The GI considers him a very severe case, due to the number of foods he reacts too and the severity of his reactions (since they affect his respiratory system they can be life-threatening).

There is NO cure. He will NOT grow out of it. The treatment is an all elemental diet. Elemental consists of three options all made from the basic amino acids of foods rather than the food proteins themselves. The three options are all formulas - Neocate Jr, Elecare, and EO28 Splash. All are repulsive, vile tasting drinks. Thankfully Beans will continue receiving it through his G-tube as he has for many years.

You thought that was bad? Well, there's more. First, Beans' very first endoscopy that he had at age two showed a severe case of EE. His prior doctors (basically every GI in Utah) all blamed the results on reflux, despite having other testing that showed NO reflux. In all likelihood, he never needed his stomach surgeries (other than having the g-tube put in) to treat the reflux. He needed to be put on the special formula. Second, Beans is allowed NO FOOD - none at all - for at least a year. In one year they'll rescope him and if he has a clear scope he'll be allowed to trial one food every several weeks to see if his body can handle it.

Beans is devastated. His health has improved immensely in the few weeks since his doctor took him off food, but this is very hard. Imagine one day you suddenly weren't allowed anything except a nasty formula. He was a trooper the past few weeks, but hearing that nothing will change for at least a year broke this little boy's heart. The GI hesitantly is allowing him to drink lemon-lime flavored Gatorade as his one concession until next summer. If he starts showing any signs of reaction though, this will be gone too.

My mommy heart is broken. I can't let him see how sad I am for him. I must remain upbeat and show him all the things he's so lucky to have, but when he asks for food - and I'm not talking candy, I mean chicken, broccoli, things others would love to have their children begging for - all I can say is, "No, hopefully we can trial it in a year."

On the way home he cried and cried. Finally I convinced him to play his DS that Uncle J and M so kindly gave him. Then I started to here that familiar giggle. Sure, there will be bumps, there will be tears, but there is also smiles, cuddles and lots to look forward to. He's still the same wild, crazy man Beans he's always been. Now he'll be a healthier version. :)

Ronald McDonald House

I know we've all heard of this place, maybe you've even donated at McDonald's, but I wanted to make sure you all know just what a service they provide. We have stayed in two locations - one when we took Beans to Cincinnati and this location in Orlando (where we've stayed several times). The expense of having a chronically ill child is extreme. Yes, there's insurance, but it doesn't come close to covering all the expenses. We spend a fortune in gas to and from appointments, over the counter medications (Beans goes through a bottle of Benadryl about every 2 weeks! A bottle of Motrin lasts about the same, and those are only a couple of the things we have to buy.) Then there's the medical tape, bottles for bolus feeding, and other assorted expenses that aren't covered. Don't forget to add in the missed time from school and work, the hours of missed sleep, and the endless time spent on the phone with doctor's offices, pharmacies and home health companies.

When you have to travel for care, Ronald McDonald House is a HUGE help. I had to reschedule Beans' appointment once already because we just couldn't afford the 5 hour each way trip. It wasn't fair to him, but what are you going to do? This time we're cutting it extremely close, but because of RMH we were able to make it. This is so embarrassing to share, but I want you to understand how much this place means. We literally had money for gas on the way down and on the way back. That is all. We are able to stay here for $15 a night - which thankfully my car didn't take quite as much gas as I thought it would so we should be okay - and McDonald's provided a delicious taco dinner (yes, I know - Tacos from McDonald's? LOL) so we were able to eat. It's a terrible, depressing feeling to not be able to provide everything your child needs. Thanks so much to McDonalds and the Ronald McDonald charities for making it possible for us to make this very important appointment.

P.S. Tomorrow is a critical day for Beans - we are hoping to get approval to start food trials and find one - any - safe food for him to eat. There are also a few other questions weighing heavily on my mind, so any spare thoughts would be appreciated.

Life Goes On

We're all adjusting to this new curveball in Bean's life. Beans and I are both still grieving the loss of the most basic human instinct - to eat and to feed your child. He's coping as well as can be expected. He hasn't cheated at all, knowing that one cheat could be the straw that breaks the camels back and sends him into a severe reaction requiring use of his Epipen (shot), 911, an ambulance ride, and a lot of other scary things. And though he understands a lot better than when he was 3, he cries several times a day wanting to eat. I would have dreamed of this day a few years back when he refused all food. Now he finally wants to eat and all I can say is NO. As soon as I can I want to get him a GameBoy DSI with a couple of games (Bakugan? Pokemon? something he'll LOVE) that he can play only when Little Man and I are eating. It's so hard to feed Little Man, let alone eat myself, when I can't feed Beans.

Physically, he's doing a lot better. His skin is almost clear for the first time in weeks! His gurgly/choky throat is clear. He has no eczema on his ears. The dark circles that have lived under his eyes for a long time are GONE. The cough that bothered him all night every night is gone too. It's exceedingly clear that food and Beans do not agree with each other.

So, I tell my 9 year old who has just gotten his taste of being a normal kid and all that entails, that I know life isn't fair, but that I love him more than life itself, that I would never have been complete without him, and I'm right here with him. I hold him while he cries then he happily jumps into his computer games or an art project. I hear him sleep peacefully at night, and I know this is what he needs. Someday maybe food will be a part of his life, but in the meantime the g-tube and Neocate are literally lifesavers and we'll continue on with his normal life.

Sad. Mad. Scared.

I haven't updated for a long time. I try to always stay focused on the positive, but that's been incredibly hard lately. Not having a reason for Little Man's increasing neurological difficulties is scary. He has days that he's very much "there" and then he has days where he can't talk straight, makes no sense and is just so out of it. That was bad enough.

Beans has a very complicated medical history including 4 months NPO when he was 3 due to aspiration. It's been a lifetime of struggles with food. From refusing to eat, to aspirating, to food allergies, dysphagia, and other issues. It has taken years and tons of work to get him to the point he's at - wanting to eat even though his diet was greatly limited by the dysphagia (difficulty swallowing) and food allergies.

In the last few weeks, his system has gone to new extremes. Within minutes of eating ANY food he breaks out in massive hives, his throat gets gurgly and he's admitted to pain/weird feelings in his throat and chest. These are not avoidable - he has reacted to things like watermelon, chicken, banana, a chocolate rice bar, even blue slushie from Sonic. His CMS nurse had us get Epipens to keep with him at all times. Epipens are injections of epinephrine to use if he goes into respiratory distress from an allergic reaction.

I've been trying to get ahold if his GI for a few days and finally heard back from him today. It's not good news. Beans is not allowed ANY food whatsoever. None. He may have water and his special elemental (amino acid) formula thru his g-tube. He sees the GI at the end of July and we'll discuss things more then. The reactions are too severe to risk feeding him.

NPO is bad enough before surgery. It is HELL for a 9 year old boy who has recently discovered a love of eating that most of us are born with. I know we have to do it for his safety. We live 45 minutes from the nearest hospital and if his throat swelled shut, even with the Epipens, it would be a really critical situation. I know all that.

But I also know that Beans loves to eat. I know how horrible NPO was when he had to do it before. I know how aware he is of being "normal." I know how much he missed out on this past year with his limited diet, and now I have to take away all of that. I will do it, I have to do it. But my heart is broken.

Busy Busy Bees

This week has been one of those where you hold on tight and enjoy the ride. Or try to enjoy it. Or maybe just try to get through it. Last week was the much awaited ENT appointment to address the boys' breathing issues while sleeping. Bleh. It's taken four months - and three or four appointments - since their sleep studies in early December for the ENT to decide these kids are way out of his league and finally put the referral through to the pediatric sleep center at Shands in Gainesville. In the meantime, while Beans has remained fairly stable with his sleeping, Little Man has deteriorated. Horrible trouble getting to sleep, staying asleep and snoring like an old man when he is actually sleeping. His night nurse has been checking him extra because he's making so much noise.

ENT assured me that an appointment would be scheduled quickly, but this isn't my first day on the job. :P Anyone who has dealt with the referral process won't be surprised to know that we haven't heard a thing about the appointment, even with his CMS nurse following up on the referral a couple days ago. CMS nurse was honest with me and said that these things can take a long time to get scheduled. No surprise really, but when your kid drops his oxygen level when sleeping you'd like to know he's really okay not being monitored at night. Little Man's levels only dropped to 83 but that's plenty low enough for me to worry, being a mom and all.

Today Little Man had his combo psychiatrist/behavioral pediatrician appointment (they see him together). The past couple weeks have been beyond horrible. He's gradually been sliding downhill over the past couple months but these weeks I think he jumped off the edge and dragged the whole family, and likely his teacher, with him. Aggressive, irritable, impulsive, sometimes not going to sleep until 4 am, and other mornings waking for the day around 3 or 4 am.

In addition to the lovely behavior issues, his coordination and balance have decreased significantly. His pediatrician noticed it at his checkup in March and the psychiatrist and behavioral ped couldn't miss it today. His speech is also often slurred and he frequently has trouble finding the right words. The doctors today are very alarmed. They said the increase in behaviors plus the neurologic decompensation are big signs that we're missing another neurological component to his overall picture.

This led them to order an immediate EEG (well, later this afternoon, but still dang quick), they're calling his neurologist and writing a letter with their concerns to get him in as soon as possible, they're also contacting the geneticist to get their input. In the meantime, they switched one of his meds and added back in a seizure med (Trileptal). They're not sure if he's having some sort of seizures that are triggering some of this or not, but the Trileptal also has mood stabilizing properties so it's a good place to start.

When we left the psych appointment, we raced across town so I could take my anatomy practical then we raced back across town to get to his EEG at 12:30. He was such an angel for it! He held so still while she glued all the electrodes on his head, as soon as he was allowed he went right to sleep.No obvious seizures appeared on the EEG, but we won't get the final report until Tuesday. I'm not sure if a normal EEG rules out seizures or if it just means he didn't have one then. It's probably a question for the neurologist.

Obviously, hearing that your child with so many issues, has yet another one - another neurological one no less - that hasn't been identified yet is a lot to deal with. We likely won't have answers for at least a few weeks. We have to travel to Jacksonville for the neurologist, Gainesville for the sleep clinic and luckily genetics comes up here. I just hope these new meds give his body and mind some relief. He feels horrible being out of control. He tries so hard, but sometimes he just can't do it. Hopefully we can get answers. It's difficult to fight the unseen enemy and just keep trying to treat symptoms as they arise, without knowing the cause behind them.

On a totally different, much happier note, Beans started soccer this week! He absolutely loves it. His days of being an impish little brother have served him well. He's not afraid to get right in there and snatch that ball away from the other kids, even though he's the smallest. He loves being part of a team.

Running with his team - at the front of the pack no less

Right before he stole the ball away as his friend went to kick

Showing off his kick to his coach

I also got a lead on a possible daycare for Beans this summer. Little Man will be home with his nurse, but Beans would be so much happier playing with other kids and getting out of the house. Cross your fingers that it works out, as the opportunity is pretty amazing. If it works out he'll actually have a special ed teacher from his school handling his tube feeds and care and looking out for him. Can't beat that.

Oh Yeah, Autism

Otherwise known as we have got to get out more. :P I've been meaning to pick up some new socks for Little Man to wear with his new orthotics for a while. The trick is, to get the ones I wanted - the ones suggested by our friend Pax who wears orthotics himself - I needed to go to the Journeyz store at the mall in Tallahassee. We live in the sticks. Our town is beyond tiny and we generally only travel into Tally for doctor appointments and I go there for school. Today has shown me we really need to change that a bit lol.

We get to the mall and Beans is looking around at the different stores you can see from the parking lot and asking which one was The Mall. Whoops. Missed a concept here. I did take him to the mall recently with my brother, but we only went into the Guitar Center store that we entered directly from the outside. Needless to say, Beans was a little confused.

We get in the store and Little Man starts freaking out a little. Not behaviorally (thank goodness as I don't know what I'd do just having had surgery) but he was so anxious. He refused to walk anywhere near the railing (we were on the second floor) and all the people were stressing him out. Poor little guy was so overwhelmed. I had to hold his hand the whole time (he is coming up on 11 years old) because he'd either start to freak and go the wrong way or he'd see something and get distracted and start to go off who knows where. Oh yeah, Rachel, this is what having a son with autism is. Yes, he's so fortunate to be high-functioning, but there are so many situations we don't even think about that are too much for him.

Luckily the salesgirl at Journeyz was very helpful, even with a crowded store, and helped us find the socks and we got out of there quickly. We needed to go down to the first floor so our next adventure was to brave the escalators. Little Man was apprehensive again. Add to his he's not the most coordinated person in the world and his visual spatial awareness is very lacking and escalators are quite exciting. :P He held my hand and I told him when to step and he did good. Once he was on he wasn't even worried.

After we left the mall, my plan was to take the kids to Tom Brown Park. I was happily surprised to see a Michael's craft store as we left the mall. We stopped in there and found some race car transfers that I'm going to try on the backs of his orthotics. I'm hoping they work okay. They should look much neater than that plain white if they work. While we were there, the boys each had to get a hat and a tail.

Then we finally made it to the park. Here they are all decked out (Little Man's not in his orthotics...I've totally slacked on that but my resolution this week is to have him wear them everyday.) You can see Beans' tail in his hands.

Beans loved wearing his new accessories. He said kids kept coming up and asking him about the tail and grownups kept coming and asking where he got his hat. Such a little attention seeker.

Probably the funniest moment of the day happened on the tire swing. I was pushing the boys and dropped my camera. Of course it landed right under the swing. I give the boys a big push and bent down to grab it, figuring I had time. Well, I did in fact have time to grab the camera and then - you guessed it - slam! The kids came back and bumped me and I fell flat on my butt. We were all laughing hysterically. And I have to admit the shredded tires covering the playground work well - neither the camera nor my behind suffered any damage. ;)

Beans loved climbing this rope pyramid. He is such a monkey now! He'd climb up there and wave his tail around. Unfortunately, try as he might, Little Man could not keep up. He got up on about the first level and slipped off scraping his arm. :( He's so tough though, no tears just back to playing.


Tonight we're dying some more Easter eggs then the boys are heading to bed in anticipation of a certain bunny's visit in the night. We had such a great day and the kids are off all week for Spring Break so I can't wait to see what the rest of the week has in store.

Fun Stuff

Today I signed Beans up for soccer! He is so very excited. Little Man has done soccer before but Beans was too weak to participate then. Beans is doing so very well and was so very excited. We got lucky because today was the deadline and I realized it 15 minutes before it closed. Whoops! A quick dash in the car and I found out we were far from the only ones who made this mistake. Those of you who have known Beans for a few years would have been as shocked as I was to hear this little voice call out, "Beans! Hey!" My little boy turned around with a big smile, waved to his friend and raced up to the door. He didn't even know this boy's name but said he was from school. It seems he knows half the people in this town. Everywhere we go, he sees someone he knows. What a change from the shy little boy that hated people. It's so neat to see!

I'm proud to announce that we have even more good news! Drumroll please......BOTH boys made A/B Honor Roll AGAIN this quarter!!!! OMG I am so thrilled for them. They never stop amazing me. It's such an honor to be their mom.

Tomorrow is the boys' last day of school before spring break. They're very excited. I have quite a bit to get done next week to make schoolwork up from having my gallbladder out, but I'm sure we'll find time to have some fun. On the 7th the kids see the ENT to discuss, yet again, their sleep apnea. Little Man's sleep is so terrible right now that I don't care what we need to do but something MUST be done to help. Then on the 16th Little Man sees his psychiatry team for a bit of tweaking on that front.

We're so blessed to have so many things come together perfectly over the past few weeks. I really think I'm the luckiest person alive.

Great news!

After a rough night where I spent hours wondering if I should bite the bullet and take Beans in, he has turned the corner! Last night he was only tolerating half rate/half strength tube feeds and was still having bad tummy issues with them, on top of the respiratory stuff. This morning he woke up and is MUCH improved! Today his cough is minimal and not nearly so barky and he has some energy back. It's simply amazing that he's getting over this without steroids or antibiotics. One more wonderful sign his health is improving! I'm loving it!

Sick Little Beans :(

Poor little Beans has another run in with his nemesis - croup. It started yesterday and was pretty mild. Today though it's kicking his little behind. Each hour it gets a little worse. Normally we deal with it at home. At 3:00 I called the pediatrician to see if he'd be willing to call in Decadron (steroids), but they wanted to see him instead. Unfortunately they stop seeing patients at 4:00 (!?!) and we live an hour away and would have to stop and pick Little Man up on the way. At this point we're going to try and hold out until tomorrow as our other option is UrgentCare or the ER. His temp is going up about .5 degrees each hour and he's getting breathing treatments every 2 hours. Thankfully Little Man has nursing tonight so if I do need to take Beans in, at least Little Man can stay home and his nurse can even get him on the bus tomorrow if needed. Hopefully this is just a bump and we can fight this off at home.

Beach Day!!

Two posts in one day, yes. I had to share our fun time at the beach today though. First beach day of the year! :D It was just under 70 degrees and WINDY, but my two little sea monkeys couldn't resist the water. We stayed for a mere half an hour but that will be followed by many more beach days to come. Enjoy the pics!

Oh look how cute, Little Man is pulling Beans!

Oh no, wait a minute, that was Little Man pulling the board out from under Beans. Doh!

Here's my little imp, Beans, throwing a mudball at Little Man - this is their favorite beach sport ;)

New Accessories

This week has been full of new "accessories" of one type or another. A few days ago Little Man got his new orthotics. He's worn orthotics for years now, varying between ones that come just above his ankles to ones that are hidden in his shoes. Most recently he had the most support the in-shoe ones could offer. Unfortunately, they haven't been providing enough support so we had to increase the support of his orthotics. Due to his hypotonia and hyperflexibility he frequently rolls his ankles and usually has back, hip, or knee pain which we're hoping to alleviate. He was casted a couple weeks back and what I thought the orthotist was describing was something like the Richie Brace shown here: but with an insert to help provide more support. While still quite obvious, I figured it looked more sports-like than special needs.

When we picked up his actual orthotics my stomach did one of those sink to the floor things where you smile and pretend that they're great because your son is actually excited for the help but on the inside you feel like a little part of your heart just tore open. There's no denying these are special needs. :( I know it probably sounds silly but I was hoping for discrete, not in-your-face. The ankles are fully mobile up and down but won't allow side to side movement or rolling and they'll help him not hyperextend his knees as much either. The heels are built up which I think helps with the hyperextension too (?). The insert part you can kind of see in this pic, it's the front mose strap and the plastic that wraps around his foot. The outer orthotic goes under and up the side of the inner and then up his leg fairly close to his knee.

Shoes are quite a feat to find that fit over the orthotics, but we've found skater type shoes before. I was shocked when the orthotist said Little Man's insurance would cover special shoes that are extra deep to accommodate these. Unfortunately, they ordered the wrong size so they had to reorder them. They should get in this week and then he'll start wearing his new orthotics (AFOs for short) an hour at a time building up to wearing them all day.

I know they'll help him. I know he's been hurting and having tons of back and leg pain. I know he loves them and is happy with them. I even know Beans is jealous because he wishes he had some (he does not need orthotics of any sort, much to his dismay). But, the mommy part of me was glad they had to reorder the shoes to delay him wearing them. That mommy part secretly wishes we could just ignore the whole issue. But that same mommy part doesn't want her boy to be in pain any longer either. What a choice. BUT (yes, another but), the important part is that Little Man likes them and needs them and that's what all these mommy parts have to keep in mind.

I do have a little brag to tell you about. This past week was standardized testing week for both Little Man and Beans. Beans worked very hard on his tests each day and we're quite proud of what he's done. Little Man really, really struggled with this test last year. This year was a whole different story. His teacher did the test 1:1 with him and he has all the accommodations they allow (extra time, extra breaks, some parts can be read to him I think, alternate pencil, and not sure what else). Well this year, this amazing year, Little Man was compliant, paid attention, and on Thursday his teacher said he even requested a break when he needed one! HUGE steps for him! We won't have the results of either one for some time, but really, the results aren't the important part when you're dealing with ESE (special ed). Just the fact that they were both able to do the test is reason to celebrate!

Finally, I must share with you Beans' newest accessory. He's been wanting to take piano lessons for months. A special someone bought him this keyboard yesterday. He was so excited that he's already learned "Twinkle, Twinkle." Now presenting, for your viewing pleasure, World Famous Pianist - Beans :D

A Beautiful Day for a Hike

Today the weather was absolutely perfect, way too lovely to stay cooped up in the house. The boys and I took off to go hiking at Leon Sinks. Ever since I had kids I've planned on taking them hiking and they've never been strong enough or well enough at the same time to actually do it. Today was a much anticipated milestone. The boys had a great time hiking along the trail. They loved looking for the blue stripe on the trees or the blue arrow pointing the way. Some of the going was hard, with roots, sticks, and steep hills, but we loved it.About half of the sinkholes were dry, but the ones that were wet were gorgeous! This one had water that was a beautiful green/blue color. We saw one that was red and several the normal "dark" water color.
I was a little bummed that we really didn't see any wildlife though. Lately Beans and I have seen two fox. One gray one on the way to pick Little Man up from school, and a red one when we were on the way to my anatomy class last week. I have to admit, I'd rather see no wildlife than a snake or other unfriendly beast though. ;)

Here's our goofy little family messing around on the trail. ;)

By about halfway the kids were pretty darn tired. Beans' legs would give out and he'd have to take a break for a bit. He was determined though and didn't let it get him down for long.Little Man had a bit of a harder time, as you can see here. He was exhausted from much earlier. It may have been a better idea to wait until we pick up his new orthotics (March 5) but he was still a trooper. He was very attached to this giant pinecone. Despite tripping over his own feet every couple of steps, he dragged it all the way home.We were all so proud when we finished. We plan on doing a lot more hiking. It's so beautiful and peaceful walking through the woods together.