Second Rate Citizens

Manny was accepted to Babies Can't Wait at the beginning of September. I was told at the time that the OT was out of town, and it would be close to a month before his first visit. I'm used to waiting months for anything to happen, so this didn't sound odd to me at all. Since that time Manny has had two visits from the Occupational therapist, who cancelled twice, Manny was sick once, and then I did not hear from her for two months. I called the service coordinator at the beginning of January and voiced my concerns.

Susan, the OT called me one day last week and said that she was yet again out of town, but she set up an appointment for Manny for Friday February 5th. That would be 8 weeks from his last scheduled appointment, which was also cancelled. She said she'd had issues with her mother in Florida, and we had had one day of in climate weather as well.

During those few months that Manny has received no services, his abilities have declined dramatically. As I have written before, his eye contact is almost nonexistent, any spoken language that remained has disappeared, and he has stopped using sign language. Would that be different should he have received OT during this time? I don't know. I guess I can add that to the list of questions that I will ask myself every day for the rest of my life. Every bit of literature that I read states that early intervention is the KEY to success for these children, yet, getting services is a nightmare.

At this point I told Steve I couldn't take one more day of doing nothing for my son. We decided to seek services through Cindy, even if we had to pay out of pocket (approx $400 per month). I called Linda, Cindy's receptionist, and she called me back promptly, saying that all I needed was a prescription from Dr. Michaels. After a half dozen phone calls to Dr. Michaels' office and no response, I finally had to do what I hate doing, calling and making a complete jack-ass out of myself, crying on the phone to the receptionist and basically threatening to "come down there" if she sent me to voicemail one more time. After 2 weeks of calling and getting no response, my jack-ass sort of behavior got them to not only call me back within 20 minutes, but it got a prescription written up and a staff member to personally walk the prescription over to Linda's office. Sheesh. Now I have an appointment on Wednesday with Cindy.

To be fair, Susan (the State OT) left a message with me yesterday, but our land-line was out of order and I didn't get the message. She called today and I answered and she wanted to come see Manny tomorrow. Unfortunately, I have a zillion things lined up for tomorrow and had lined up childcare for Manny. From what I gathered, it was tomorrow or nothing, and she now said that she would be out of town for another week and a half after that. She says that she doesn't recall calling me and making an appointment for the 5th.

At that point I sort of lost it, telling her that I am not a stay-at-home mom. Even though I work at home, I actually do have a job. I need to know more than one day in advance that she is coming. On the day that I DO have an appointment with her, I promise that every attempt, barring illness or fire, will be made to be respectful of her time. I explained that it felt like, because of one mistake on my part, that I had been written off as someone who wasn't going to be respectful of her time. I told her about Manny's regressions, that I was basically in a panic to get SOME sort of help for my son. While I don't blame her for having her own family/car/weather issues, that still doesn't help Manny. I mentioned that I was trying to get him in with Cindy. Of course she told me that I could not do private OT AND state OT. She also mentioned that, because cases like mine where the parents have insurance are such a "headache" and the paperwork was a "nightmare" she had made the choice not to even bill for Manny. "So you aren't getting paid anything to see Manny?" Exactly how am I supposed to feel about that? Well, you can imagine. It was time to go get Manny from school, I told her I had to go and hung up.

I tried not to sob uncontrollably while I was picking up Manny.. it didn't work. Luckily Manny's teacher has an autistic son, so all I had to tell her was that I was being blown off by the State OT and she patted my back and said that she understands.

Later Susan called back and attempted to smooth things over. I don't blame her, exactly.. however I do feel like our area would probably be better off if she would quit, leaving the State to have to pay for services from someone who actually has time and motivation to do the job, instead of leaving us to feel like we're just being strung along until the child is three years old. I really feel like Susan just wanted to make sure I didn't think that because "insurance cases like mine are such a huge headache" that was why she hasn't really bothered about Manny, or even attempted to call and let me know why she wasn't seeing him. It really didn't work. I'm trying not to be one-sided about this, but I'm the parent watching my child's abilities go in the toilet every day. She also offered to come to see him tonight, "late, like 8 PM." I'm sure, by refusing that, because that's his and Jake's bedtime, that I was once again trashing our chances of getting any state help for paying for his OT.

I'm not angry at Susan or the people at Babies Can't Wait (well, obviously babies CAN wait.. for a very very long time), but I'm completely and utterly disgusted with the system. I worry all the time that my special children will be treated as second rate citizens when they are older should they become special needs adults. I don't really have to wonder, as already I feel like we are treated like people who are just trying to mooch off of the system. The fact that Steve and I have a decent income between us many times only makes it worse. We can't afford to pay for all of the care that isn't paid for by our insurance, however the fact that we HAVE insurance causes the system to work even less for our children.

I'm tired of fighting. Maybe I'm not doing the right thing for those who will follow us in struggling with Babies Can't Wait by giving up, but we have to do the best we can for Manny. The ONLY gift that I can give him right now to ensure that he is the best that he can be is the right services and help RIGHT NOW. I simply have no other choice other than to get him real services with a good occupational therapist, EVERY week, not every other week.. maybe.. if she has time for Manny. I will write a letter of due process and try to get BCW to pay for those OT appointments that have not been provided through them since he was accepted, and will continue to get OT with Cindy, someone who I KNOW is on our side and who we can trust.

Super Powers

*****


I haven't written a lot about my Jake lately. I've been too busy drowning in my own bullshit. Sometimes curious people ask if Jake can "do things." You know, like Rain Man or the autistic man who can draw cityscapes after seeing a brief Ariel view of a city. I call them superpowers, and yes, he has quite a few of them, way too many to showcase here, but I will try.

***Warning: This is one of those posts that is too long and includes way too many pictures and/or videos, and took me weeks or months to put together. It probably won't be interesting to anybody but some Canadians that like us for some reason (and you know who you are). Family members who are waiting for a shout out should probably steer clear.***

And if you aren't into all of the artwork and photos, scroll to the bottom for a more traditional HALLELUJAH moment.

On to the fun stuff:

I'm not sure how many pictures of Jake's drawing and painting I have posted here on the blog (I get confused, because so much is posted real-time on facebook), but his drawing ability has honestly leveled out a little, and, as far as I know (and I know little, having very little to compare to) I *think* that his drawing is becoming more age-typical. Lately his focus is on letters and numbers. He has lost a lot of his interest in drawing and tends to simply write words, letters and numbers.

Many times, with children on the spectrum, there is a lot of concern when a child has advanced reading ability, whether or not they are actually comprehending the words, or simply regurgitating something that they have memorized. Yes, they can spell "C-A-T, cat" because they saw it on the television, but they don't make a connection between the word "cat" and the actual animal or drawn figure. With Jake, it has been proven over and over that this is not the case. He has drawn numerous figures himself after writing a word, so at least we know that his labeling ability expands to written nouns and the objects. Also, Jake can write words, sight-read them, and most recently (I just discovered) he can hear a word spelled and identify it.

I love taking videos of Jake and these interactions, especially because I always learn something or see something I didn't see before. At the beginning he finishes a word for me (what we were doing before I went to get the camera, but he wouldn't repeat it). Then, I begin to spell words for him. When I spell "D-O-G" he first says "clifford" (a dog cartoon character, of course), then he answers correctly, then says "Poo" (our old dog who died Christmas week). I didn't notice at the time, but watching the video I realize that he was giving me examples of dogs that he knew. He even quietly says "Poo a dog" or "Poo is a dog," and I don't even notice. It really makes me wonder what else he says that I don't notice.

Here is the video, he shows his knowledge of mostly 3 letters words, with a few four and even a couple of 5 letter words. He knows a TON, though getting him to answer consistently is still an issue:



His superpowers are amazing, and make for great conversation, but when I'm not in such an optimistic mood, I will call them "party tricks." I won't focus too much on that now, becuase he really is getting better at the things that he is deficient in such as social interaction, empathy, etc. He still has a very very long way to go. I didn't teach him ONE SINGLE THING that I am demonstrating here, not even the spelling. He simply learns that from TV and video games. The things that most children will struggle with come naturally to Jake. Learning to realize that he's hurt someone's feelings, or that making other people happy is important is something that he will have to be taught, and there are only a few people on the planet that really really good at teaching those things to a child.. and I'm afraid that I'm not one of them. The ones who do it professionally are usually regarded as kooks and/or they charge a lot of money to teach.


Jake has been taking pictures for quite a while. I've scattered pictures that he's taken through this post, and will simply list some below. I couldn't remember if any of these have made it to previous blog posts, and I apologize if they have. Also, if you're a friend on facebook, you've probably seen all of this as it happened.. sorry. Despite the fact that we invested a pretty penny into my "good" camera, after a few episodes of Jake sneaking off with it, I just can't deny him access to the camera. Often I find these pictures when I download some photos of bags for my store. Other times I give him the camera, when we are out in the woods, in the city, or in the backyard. His perspective is definitely interesting.

(all photos in this post were one hundred percent Jake's own.. with absolutely NO coaching.. sometimes we didn't even know he was taking them. Out of the house he was being supervised closely, but allowed to choose his own subject matter)











There are so many more nice pictures on my computer somewhere, but I am impatient. I will definitely be handing the camera over to Jake during our various outings this spring. I have insurance on the thing, and what could be more priceless than pictures taken by my son. It doesn't hurt that he actually knows how to frame pictures. I have already handed over my old terrible digital, and have contemplated getting him one of those children's cameras. Unfortunately, he is impatient like any other child (or me, when it comes to cameras) and I would rather risk my camera to get his perspective in good quality.

Yesterday Jake was running around with my camera, as usual. He had finished eating dinner and Steve had just returned home, so we were thankful that he was occupied while Steve and I ate. We did not know that the camera was on the moving picture video setting, so there were a stream of disjointed and few-second-long films on the camera. However, these two stood out as consecutive pieces... Maybe I should try to explain video to him a little more so that he can capture more funny episodes like this. Again, I thought he was just taking pictures:

(a note: he calls my bottle of nutritional yeast "cheese")


More superpowers to come.

Ok.. The Big Finish... and way TMI.....

Here is a video of Jake acting pretty much like a normal 4 year old. He found a pair of my very favorite hand-knitted socks (thanks Ariane) and liked how slippery they were. He called the floor "ice" and even referenced me by looking right at me (although I've found that sometimes the best way to look into my childrens' eyes is to look through a camera lense, because they look at the CAMERA, even though they both avoid eye contact). At the end of the video he answers two questions: "What is your name." and "How old are you." Two years worth of speech therapy, a point where he answered the first question for a couple of weeks followed by a loss of that skill... and now FINALLY, he answers it consistently.... I can now prove that he is my child if he throws a tantrum in an airport.




The last amazing feat has no pictures, and you will be glad of that, I'm sure. Potty training... such a subject with any new parents, quickly became something that Steve and I didn't talk about with other people. Jake never had any issue with being wet or soiled as an infant or toddler, that is, he wouldn't tell us if he was wet or dirty. He finally started telling us around the age of three and a half. When it became WAY past time for him to begin potty training, we tried to coax him to the potty. He was terrified, literally terrified of the toilet and even of his potty chair. Pressure to use the toilet only resulted in making matters worse, and, since we are human, frustration and scolding made things even worse than that. Jake went through a phase of feces smearing that I won't even give the details of. These sorts of things will make you feel pretty much like the worst parent in the world and I'll admit that even lied about it to my friends, saying that he'd stopped. Many typical children never exhibit these behaviors, and even if they do, its not a "behavior" and more of an accident or a temporary phase.

Jake did not find interest in the toilet until he was just four, when he started peeing in the potty. Once that was accomplished, he pretty much NEVER had another accident. Pee went in the potty.. GOT it.. check. ("Wapner at eight.") Poop was another story. Add into this scenario that we have a PEE trained child who will pee in the potty if he's in underwear, or in his diaper if he's in a pull-up.. and.. jeez, what to do?? In the past year we have went from no bowel control, including outings or school, to a terrific fear of sitting on ANY potty, including the kiddie toilet, to a child who could be bribed to sit on the potty if we gave him his I-touch (yeah yeah.. HIS I touch.. only to be played with ON the potty). I feel like I'm tempting fate by even bragging about this, but Jake has pooped on the potty (unprompted.. meaning I didn't threaten to freak out) for three days in a row. Please please PLEASE let this be similar to when he figured out that pee went in the potty. He is using the kiddie potty, and, because he is a creature of habit, he will often go and sit on the potty to play his I-touch.. which I am sure will be another struggle in the future, but it is progress.. sweet sweet progress. Considering the intense pressure that has been put on me, as a mother, by my family members since he was 2 years old to potty train.. I can finally say.. SEE! I did it.... maybe....

I'm not good at writing conclusions anymore, because, when it comes to my kids, there just isn't one. There's so much more to talk about, but I have to end somehow, so I will.

Its gonna be cold cold cold cold.....

In case you haven't heard, its been cold here in Georgia. I think that the cold has decided to touch every corner of the U.S.A this winter. I'm thawing out and recovering from the holidays and thinking a lot. I'm hoping to make some changes in the near future. I have been putting off writing all of this down. Once I start, it may be hard to stop.

Manny went to Dalton Ear, Nose and Throat on Wednesday (1/6). I think that I pretty much flew through the holiday season riding on a magic carpet of hope that this appointment would go a certain way. Well, I didn't fly THAT high, because I was still a ball of stress that ran from as much reality as I could, but I take what I can get. I began to believe that maybe Manny's regression and delays coincided with our long season of illness last year, where Manny lost so much weight from virus after virus. That this illness had possibly caused some ear issues, maybe even inner ear issues, explaining his ataxia, and hearing loss, explaining his speech regression. That it was possible that all he needs are tubes in his ears to release some of the negative pressure that the hearing tests were showing (well, might have been showing.. but he wouldn't be still)... and he will be able to miraculously recover and with a little bit of speech and OT, he'll begin to speak and develop normally. I forgot to worry about other things I was noticing, I tried to believe that everything would be fixed once they fixed his hearing, that I suddenly thought for SURE was the main issue. The Hemi/Onc DID say that sometimes people have NF1 and NEVER know it, even with tumors. Doesn't that mean that the ataxia, speech regression, and the discovery of the tumors might all be coincidence, and unrelated to each other? It all made SO much sense, if you thought about it.. really hard, and forgot about the physical and muscle tone regression, milestones not being met....but I digress. Back to the real story.

Dr. Dingus at Dalton Ear Nose and throat was so very nice. His staff were some of the nicest people I'd ever met. First he pulled a big hunk of wax out of Manny's ear, ick! He assured me that it wasn't causing any hearing issues, and probably little if any discomfort (dangit.. I was hoping he'd say "this is probably what keeps him from sleeping every night!"). He then handed me over to his technician who tested negative pressure. Very little, if any, was detected (I guess lots of negative pressure would tell us if he had fluid that could be relieved with tubes, no such luck). Manny had a complete melt-down after his initial exam, and I tried a few different positions in the carrier and he finally went to sleep. The tech was able to do a test to check his cochlear function without sedation, thank goodness. It was fine. His ears, physically, are functioning perfectly. I'm supposed to be happy about this.

(ETA: I wish I could remember the tech's name (she may have been an Audiologist.. but I forget everything, I hadn't slept that night). She was so sweet, a nice redhaired lady if you ever come into contact with her. She kept asking me if we had checked this or that or had this or that test done, and seemed surprised that he was so old and that we had not . I finally said "I constantly run into professionals that ask me why we haven't done this or that test... only 6 months ago we heard the word 'brain tumor.' Please forgive us because we're doing the best that we can." She put her hand firmly on my shoulder and squeezed and said "I know you are, I didn't think of that, and I think you are doing fine. Please know that I meant no criticism." I haven't teared up so far in the writing of this post, but I'm tempted now. Its so nice to run across people who are sensitive and compassionate. What a nice place.)



Dr. Dingus dismissed us with a prescription to have another test run, one to check to see if the brain is receiving the information when Manny's ears hear. Manny would need to be sedated. I can go back to Scottish Rite to have this test run. I don't think that it is necessary, however, what am I to do?

Why don't I think that it is necessary? I think that Manny is autistic, like his brother. I finally allowed my conscious mind to be hit with this news on Thursday night while we were having dinner at the Mexican Place.

Even the two or three words that Manny held onto have long gone. He still says "tickle tickle".. sometimes, and a low "chgghchgga" when he plays with trains, but other than that, even his sign language is completely gone.

He has begun to lay in the floor on his back and either stare at the wall or "nothing" or play with one particular kitchen object (like brother). He rarely makes eye contact and is oblivious to his surroundings. He doesn't bring things to show them to us, and would rather lay in a corner and bang his feet on the wall. When he's not engaging in solitary behavior he wants to be held tightly like an infant.. and little in between. Lately I've started to grasp at straws and try to get him to make ANY social engagement, and can get him to do a certain tongue-raspberry type game with me, but that is it. I tend to say to myself "oh no! there he is! I was wrong" but I know better now.. these are just glimpses of "normalcy".. false pieces of hope that I've been seeing with Jake since he was little.

Why did my heart sink AT the Mexican Place? I realized right then and there.. this is it.. this is autism times two. A little baby girl came in, 18 or 19 months old, two at the oldest. Her mother put her in the high chair and said "put your bink on the table." She complied. Then the little girl pointed at the diaper bag and said "ippy! ippy mik!" Her mom gave her the sippy of milk. Then Manny screeched and she turned her head and stared at Manny. I waved and her and she waved back and smiled. I tried to show Manny the baby... no dice. He just wriggled and tried to get down. He's never waved at another baby. Jake is learning to do it. He's also never followed a direction, ever.. not "put that down" or "go pick up the...". Nor has he ever pointed at something, named it by name and asked for it. At this point even his sign language is completely gone. Manny is 28 months old and has the capacity of a 10-12 month old in almost every skill, speech, gross motor, fine motor, and social, and is regressing.

Autism would explain Manny's regression, and the fact that none of his issues can be physically explained by his tumors or his NF1. It would also explain why he is so very very delayed compared to other children who are only affected my NF1. He is at "the age" where many children who develop normally until age two, or who show very mild global delays are often seen to suddenly exhibit more and more symptoms of autism. Male siblings of children with autism have a 1 in 3 chance of being autistic. 1 in about every 5,000 people have NF1. I should probably buy more lottery tickets.

Please don't tell me what a great mother I am, I haven't been doing a good job at all. I yell at my kids, I whack them from time to time... I have no patience. Me, someone who has always wished I had the patience for homeschooling, is praying for the heat to be fixed in Jake's building so that he can go back to school. I'm on a mission to lose weight, even though that taking care of that will take even MORE of my time away from my family. I ran fast and far from "The Holidays" and almost succeeded, though its left me with more guilt than I can handle. Manny is getting exactly NO services from Babies can't Wait.. I haven't heard from the OT in 5 weeks. I love my husband, but I am having a terrible time giving him anything but a stressed out crazy person.

Thank you, family, for our gifts this season. I have grand delusions of writing each and every one of you with pictures, but please don't hold me to it.


Since this is the blog-post that never ends.. Here are some pictures from today. It was actually one of the most pleasant days we've had lately as a family, doing what we "used to" do, before everything went to hell, everybody got sick, everybody got pissed of, and everybody needed a doctor's appointment every week. We headed out towards Lafayette, and went to a spring covered cave entrance. Jake was extremely upset that we weren't going swimming (it was 20 degrees) and tried to undress right there.

I've been planning this post for a couple of weeks, and it didn't come out nearly how I wanted it to. I cried a LOT just putting my thoughts together, and almost not at all writing this.

We are grateful to receive.....

I just had to post about Ariane's knitting. I can't knit.. but I LOVE knitted things. She made the boys the most amazing socks... I LOVE my woolie socks, but socks for little boys are impossible to find! There are actually two pair for Manny, but I think the blue ones are on him right now, as he's in the backyard with Steve. They're superwash wool even!

Steve got this awesome hat. I think my Dad needs one of these!


I'm getting a pair of absolutely gorgeous fingerless gloves (I saw one, but they're still being knitted.) I can't imagine how a mama with a full time job and two kids might have ran out of time to knit. I LOVE you Ariane.

Ok, and here's just some more fun video of the holidays, just for fun:

First, one of the boy's presents from Granny and Pops. Jake LOVES it. They also got them a large therapy ball (thank goodness, because ours got busted). Their gift to Steve and I was a membership to the Creative Discovery Museum. WHOOHOO! We actually used it yesterday and they had a blast.


And, NOWHERE else will do for Jake, not even his very very favorite places. I actually made the mistake of telling him where we were going a day in advance. Sheesh at the meltdowns! I won't do that again.


And lastly... Jake's latest food obsession. Don't you just love the way he says 'sushi sandwich'?


Ok, that's all for now. BTW. I truly appreciate all the friends who follow my blog and offer us support whenever we've had a rough time. Some of you call or write me every single time I post, and you just don't know how much that means to me. I don't know what we'd do without the people who are interested and involved on a day-to-day basis. So many friends and family members called, texted and FB'd on Christmas day (sorry that we were in the woods and couldn't reply, we love you all and heard everyone). Hope everyone has a great new years celebration.

Holiday Update

The "pressure cooker" of the holiday season is almost over. Again, its no secret that I'm a bit of a scrooge, but, since get-togethers that revolve almost 100% completely around gift exchange and blatant consumerism with less emphasis on simply being together and getting to know each other go very much against our ideals and beliefs, it can be grueling. However, I was very disappointed that we were unable to make it to Mamaw's get-together, especially since it was her first one without Papaw. Unfortunately, myself and both boys were very sick during that weekend, and I actually ended up at urgent care with a myriad of ailments the day we were supposed to be at Mamaw's. The boys healed quickly, and I am still on the mend, but we managed to have a beautiful holiday.

Santa came to visit one day early, on the morning of the 24th. The kids LOVED their train as you can see here:



A friend of mine, a grandmother herself, told me the other day, "You are a family now, make your own traditions that fit your lifestyle and beliefs, it doesn't always have to be the way 'grandma used to do it.'" She's enjoying seeing her own children and grandchildren begin their own traditions. I think she's a special lady for having this attitude. We have our own beliefs, but just like everyone else we just want to be with people who are accepting and respectful during this time. This was our second year at Kevin and Ariane's house for Christmas, and, since nobody threw up this time, it was awesome. Christmas day both families (we missed you Donovan!) spent communing with nature with a trip to High Falls State Park. Because of the copious amounts of rain that we have received lately, the waterfall was an awe inspiring experience. A stretch of river that is dangerous on a normal day (any waterplay in this area is strictly forbidden) was a death trap. Absolutely gorgeous and an experience I'll never forget.



Although Manny only slept a few hours each night, which made me tired and grumpy, I was so glad to spend those days with our friends. I think it will be this way for many many years to come (if they'll have us). Thanks for having us, Carithers Family.



The kids have had a great holiday. They have received some really really nice gifts. Both Steve's family and the Carithers understand and respect our "toy rules", knowing that its not just me being a horrible nasty "mommy dearest" in making these rules, but that its just us trying to do what is right and that its important to what we are trying to teach our children as well as their developmental needs.

After a couple of days to recuperate, my best friend in the whole world is, as I type, on her way here from St. Louis. We've been friends for 16 years and have been through hell and high water together. We usually get to see each other about twice per year, but due to well, life, its been almost a year and a half. I can't wait, and I'm about to jump out of my skin waiting for her to get here.

We'll probably do nothing but watch kiddies on new years eve, since a babysitter is out of the question, but Katy the door once they go to sleep! Happy New Year!

We Got a Santa Picture!

I'm actually very very happy with how today went, despite the unimaginable situation that we encountered. The visit to Santa was completely impromptu. I thought about sending this as a letter to the editor (thats why I mentioned neither boy's name), but I probably won't. No use stirring the pot in this weird little small town.

**************************************

This morning my 4 year old son came to me and said "Wanna go see Santa." This is a big deal to my family and I, because my son is autistic, and we're not always sure what is going on inside of his head. He talks and has a lot of words but he has a lot of trouble communicating his wants and feelings to us. I didn't even really know that he understood the concept of Santa, or that he could GO see him, even though we try to explain.

All morning he asked. I couldn't believe it. I was skeptical, but I was taking my son to see Santa. I didn't even care about a picture, because we have never been able to get a professional portrait done of him. He simply can't sit still or understand most instructions and gets very anxious in any new situation. Minutes after Walnut Square Mall opened, I headed to Santa's headquarters with my son and his two year old brother. We only had to wait behind one family who was photographing their baby. It took a bit of time, so my son was impatient, and I was getting worried that he would melt down. My stomach was churning with anxiety hoping that this would be a good experience for him as he tried every opening to run to Santa and into another family's picture.

As soon as the family in front of us was finished I said "Its your turn!" and my son flapped his hands wildly and doubled over giggling in excitement. Almost at that same moment, a group of three ladies, all senior citizens, walked up to Santa's entrance. The one in front began banging on the table to get someone's attention, while I spoke to the lady in back. "Oh, please, we've been waiting a long time and my son is getting very impatient, we were here already." Then the ladies proceded to go stand by Santa for their picture. I exclaimed "I told him it was his turn, we were next!" Two of the ladies looked at me like I was a nutbag, while the one I has spoken directly to mouthed "I'm sorry." out of eyesight of the other two. My son burst into tears. He cried and cried while I tried to wait for the ladies to first have the picture made, for them to argue a while with the photographer, and for them to socialize with a friend who walked up.

When it was finally my son's turn, he ran up to Santa, put his head in Santa's lap and sobbed for a second, then pushed him away and ran to me saying "Go home?!" I took him to the car. I wanted to cry and I was very close to it. We were so close to this being a good experience.

While putting my sobbing son in the car and choking back tears, a tiny voice says "Go see Santa?" Really? After all of that, my son was asking again. Usually, once he has a bad experience at any place, he may never want to go back again, and his memory is VERY good. I asked him if he wanted to go back inside to see Santa. He said "Inside, see Santa!" Of course I loaded up two boys again, and not only did we get to see Santa, we got a picture with both boys.

Please be kind to others, and look around and take notice to what you are doing during this holiday season. Speak up if you notice one of your friends being unintentionally or intentionally rude. Never underestimate the importance of an event to a child, and never make assumptions about someone else's situation.

*********************************************

MRI appointment (aka, "This is the appointment that never ends.")

Once again I got up at 4:30 AM, got everything in the car, and picked up a soundly sleeping Manny (guaranteed to sleep through the night if he has an MRI appointment, and no other time), and put him in the car with his pajamas and a sippy of juice. Check in and waiting went well. Only the receptionist decided to bring up last month's visit. I didn't even respond to her, especially since she had just been rude to myself and a terrified looking couple with a 22 month old, also diagnosed with NF1, here for her first MRI.

Manny showed his propensity to tear out an IV line with his teeth once, then, after another was positioned and I was left to hold him down while he screamed hysterically, the nurse showed up and sheepishly told me that the wait would be anouother 45 minutes or so. Ugh. So.. thank the universe for babywearing and my Kinderpack because I scissored Manny between my legs long enough to hook up the carrier in the front carry, put him in, and that way not only could he not reach his IV with his hand, he also couldn't reach it with his teeth as long as I kept my arms in a "hug" position. About 1 minute of that and he was fast asleep. Whew. Once we were called in the doctor and nurses insisted that I put Manny down instead of sedating him while he was still in the carrier, like I suggested. So, he ripped out another line with his teeth, and once yet another IV line was put into his arm, he was finally sedated.

I had a great nap and he was brought back to me, all corpse-like and weird. He woke up pretty well and we went to lunch, then back to Dr. Aguilera's office (the hematologist/oncologist).

Great news! The tumors have not changed one single iota. They have not grown or changed, nor have any more appeared. She wants him back for another MRI in six months (instead of the four she'd suggested before). Hopefully, if that one is the same, we can go to MRIs ever year, instead of so often. This is the best news that we could have hoped for.

Next she sent me off to audiology to see if Manny would cooperate with an audiogram. We were unable to coordinate the hearing exam with the MRI this time, as Manny wouldnt' be able to be sedated long enough. The audiologist did a few tests that we couldn't really complete, as Manny was tired, but she did say that Manny has quite a bit of negative pressure in his ears, possibly due to congestion from a cold, but also possibly due to fluid buildup behind his eardrums. Manny often complains of ear pain and acts like he has an ear infection, though no infection is every found to be present. Its possible that he has fluid in his ears that could be causing an issue with his hearing, hence the speech delay. After speaking to the audiologist, we feel like this is an avenue that we definitely need to investigate.

I made it back home around 5:30. I'm tired but happy with today's appointment. I'm off to try to relax for a while.