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.