Holy crap! Where has the time gone?!?!?

So sorry! I never meant to be away so long (yeah, I know. You’ve heard that one before, lol). The time has gotten away from me this year. A massive update is in order. We shall start with the Little One.

 Owen had his surgery (technically named a Posterior Fossa Craniectomyapparently. Better known as Decompression) on February 15. He was off to a rocky start, as they had trouble stabilizing his oxygen levels under anesthesia. They finally got started an hour and a half late, and after almost two and a half hours, they were finished. He spent a day and a half in the PICU, where he looked so pathetic.

He spent a total of 5 days in the hospital, and was his usual bouncy self by the time we got home. His incision was 2 or 3 inches long and had 5 sutures.

I am sooooo glad we had the surgery done. Before surgery, he seemed like a pretty happy, well-adjusted kid. I was concerned that we were putting him through all this for nothing, but the neurosurgeon felt it was really necessary, so we went ahead with it. Now, he is like a different kid. He giggles all the time. He speaks in complete sentences. He is more coordinated. He still doesn’t sleep much, so I’m thinking the sleep apnea didn’t go away, but I can live with that. His occupational therapist did a Peabody just before and just after surgery so we could get a benchmark. Before surgery, his grasping (hand strength) was at the 35th percentile. His visual-motor skills (hand/eye coordination) were in the 17th percentile. After surgery, grasping is now in the 85th percentile and v-m is at the 25th! And that was at 1 week post-op. His neurosurgeon warned us that it takes a minimum of 6 weeks just to get back to baseline (where he started when he had the surgery)! I can only imagine how much better it will be in a few more weeks. I am dying to get him back in to the speech therapist for another eval, but I’m pretty sure the insurance won’t pay for it, so I guess I’ll just have to keep wondering.

And now on to the Big One: Reed is doing so awesome I hardly recognize him lately. He is a model student at school, at home, and pretty much everywhere he goes. We had our IEP meeting last week (I think I might be the only parent around here who LOVES those meetings, lol). He still qualifies for services under the Autism Spectrum Disorder (duh!) and Sensorineural Hearing Loss. Which means that he will get all the same stuff next year as he gets this year (one-to-one aide, keyboard for writing assignments, and FM sound-field mostly). They will work more on weaning him off his aide next year (she’s been doing a great job of that already but he’s not quite ready to give her up completely), with the goal of going solo by third grade. They are planning to keep him in the gifted program next year, since he’s doing so well there this year. We’re not sure yet whether he will have the same teacher/classroom, or move up to the next class (his class this year is a 1st/2nd class, so he could stay there as a 2nd grader or move over to the 2nd/3rd grade class). As tempting as it is to keep him in his comfort zone with the teacher who has done so well with him this year, I don’t want to hold him back if he would do better with the more challenging material. He is doing so much better with transitions lately, that I’m thinking I might be making too much of this anyway. I told the school to place him wherever they feel he is best suited. If he has trouble in the other class, we can always move him back. He has one class a day with the other teacher now and seems to like him. He’s never had any problems in there (although it helps that he goes to Mr. Paris’ class for Geography, his favorite subject). They will be retesting his reading this week, so I will let you know if there are any more developments in that department. He will also be taking the IOWA test just after Spring Break (who schedules these things?!?). It is his first standardized test, and I’m very interested to see how he’ll do. They’ve written into his IEP that he is allowed extra help and time for standardized tests, so I’m not particularly worried about that, but he doesn’t like oral testing in general, so I am a bit worried that he will refuse to answer any questions at all.

As far as social skills, this is the area he has most excelled in this year. I was concerned about how he would get along with the kids in the gifted program, but it turns out my concerns were unfounded. Reed is actually popular this year! He has actual friends, and not just “friends” (meaning every kid in the class). We went to movie night at school last night, and he had a steady stream of kids running up to him and giving him hugs (which he easily reciprocated) or high fives or just chatting for the entire hour we waited before the movie started. Some of these kids aren’t even in his class. A few were in his Kindergarten class last year, but some I’ve only seen around the halls and have no idea who they are. It seems like every time I walk through school with him, somebody greets him with “Hi Reed!” and a big wave or hug. Where did this social butterfly come from? He has really found his place in school this year. I am so pleased! If you could see my face right now, I am grinning as I type (and chuckling to myself as I look at Reed siting next to me playing video games on Daddy’s computer while sucking his thumb, so obviously he is still my Reed).

In other news: we got a new car! Hooray! It’s the nicest car we’ve ever owned, and I’m so excited about it. It’s a 2005 Kia Rio Cinco station wagon. It’s only a little over a year old and has 20,000 miles on it (we put almost 2,000 of them on it in the 3 weeks we’ve owned it, lol). I love having a station wagon again (my first car was a station wagon. I wasn’t exactly the coolest teenager, but man you could fit a lot of people and their stuff in there!). No more struggling with the stroller. No more cramming the wagon in the front passenger seat (it didn’t go into either trunk before).

I guess that’s about it for us. We don’t generally lead very exciting lives, so even though it’s been months since I updated, there’s really not much to tell. I’m slowly getting caught up on reading all my favorite blogs, and have been scrapbooking like crazy now that Heath has built me a new computer. You can bet you’ll be seeing a lot of scrapbook pages on here, lol. In fact, I’m running out of pictures to scrap, so if you’d like some scrapbook pages made, feel free to email me. Scrapping is my stress-reliever and I love doing it. =]

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Downward Spiral

It’s always something around here. As I reported in my last post (a lifetime ago, I know, I know), Owen has a Chiari Malformation. We met with the neurosurgeon just after Thanksgiving, and he didn’t seem to concerned. Just to be safe, we pushed for a new MRI, and he agreed.  We got a call from the neurosurgeon a few days before Christmas and it was NOT the call I was hoping for. Owen needs surgery. The sooner, the better. He said that on average, Chiaris tend to be about 3mm. At that size, most patients don’t require surgery. Owen’s measured 15mm and is restricting the fluid around his brain. On top of that, they think he may have sleep apnea, so we have to do a sleep study before surgery.

How do you get used to the idea of your baby having brain surgery?

The Plot Thickens

I won’t bore you with the details of where I’ve been the last month or so. Suffice it to say it’s been a long couple weeks.

I thought Owen was going to be the lucky one here. The neurologist has declared him to be autism-free for the time being (although she recommended another eval after he turns 3 when it can be a little easier to spot Asperger’s). He has been discharged from speech therapy, and although he has started OT, he’s making great progress. Fast forward to Tuesday’s follow-up with the neurologist. I was expecting just a quick visit to update them on his progress since his visit in May. Imagine my surprise when she tells me she has finally been able to access his MRI from last November, and found something abnormal. He has been diagnosed with a Chiari Malformation. My first thought is to be completely terrified. Especially after she writes the order for the pediatric neurosurgeon and explains that he may need a surgery called a “decompression” in which they will enlarge the opening at the base of his skull. My next thought is to be really furious, because he had this MRI a year ago and they told me at the time that it was all clear. Why didn’t someone catch this last year? It turns out that this is the most likely cause of all his developmental delays, his feeding trouble, and his recent unexplained bouts of inconsolable crying (he’s probably having headaches but can’t tell us). My poor baby has been suffering, and it’s because they didn’t properly read the test. Seriously, why even DO the MRI if you’re not going to catch these things?

We meet with the neurosurgeon on November 27th. In the meantime, I’m trying really hard not to research this too much, because I don’t want to freak myself out too badly until I know what we’re dealing with. I have asked a few on-line friends who are dealing ith this condition for their recommendations of questions to ask and tests to request, but other than that, I’m trying to leave it be. Yeah, that’s not going to last long, lol.

Progress Report

I’ve been lax in posting again. Sorry about that. The end of summer and beginning of the school year has found me quite busy. We went on a fantastic vacation. Reed did so great! There was only one minor meltdown, and one destructive episode, but otherwise he was charming. Not bad for an 8 day vacation that took us across 4 states. We even had what Heath jokingly calls the “Wallyworld experience” in which the amusement park we had advance tickets for was closed for the week when we showed up at the front gate. I thought for sure that would be a deal-breaker for Reed, but he handled it like a trooper. He was clearly disappointed, but cheerfully participated in the remainder of the activities we planned for the day. Luckily, the park re-opened for the holiday weekend, so we still got to use our tickets (although we had to skip the family reunion we’ve been planning to attend all year. Oh well.).

And now for the best news of all: Reed is doing great in school! I was so sure that this week would be a disaster. We got home from vacation 45 minutes before bedtime the day before school started. After more than a week away from home, I was anticipating the transition from vacation to home to be difficult enough on its own. Add to that the transition from summer vacation to school and I was certain we had a recipe for disaster. Boy, was I wrong. He has had phenomenal days all week (school started on Tuesday). His teacher and aide have been thrilled with his participation. But hands-down, the best moment of the school year so far for me happened before school even started. We were standing in the hall outside his classroom waiting for the teachers to check the kids in. The hallway was utter chaos. Reed was looking a little anxious, but was overall taking it well. All of a sudden, a boy from his Kindergarten class last year rounds the corner in front of us. Reed jumped out from the wall, looked him squarely in the face and said “Hi Alex! It’s me, Reed. Are you in my class?” I nearly fainted. In spite of being pretty overwhelmed by the noise and confusion, he still managed to initiate an age-appropriate conversation without any help from an adult. Holy cow, where did this come from? The next morning, he stood in line with another boy from last year’s class and chatted while they waited to be let into the classroom, while his aide looked on from a distance. She commented that, while he mostly listened as the other boy talked, he did interact in the conversation as well. Woo Hoo! He’s making friends this year, not just “friends” (which seemed to mean anyone whose name he knew and could identify in the hallway at school last year).

One last, but HUGE victory to report for the week: Yesterday, our library had a special event to unveil the newly renovated children’s section. Reed loves the library, but has trouble with the basic library rules, so we don’t go often, but since there were going to be special guests reading stories and crafts and games for the kids, I decided this would be a good chance for him to spend some time with his beloved books without having to worry to much about being quiet and still. Not only did he do crafts with a couple other kids, and listen attentively to the celebrity guest readers, he READ ALOUD TO THE ENTIRE LIBRARY. Yes, you heard me correctly. One of the volunteers asked if he’d like to read a book, and he jumped up on stage, and read 3 short stories to 2 dozen spectators. He even remembered to turn the book to show the illustrations at the end of each page, proving that he realized that he was interacting with the audience. Naturally, I took lots of pictures, but it was with the old film camera (my digital’s been acting up lately), and I haven’t developed the roll yet. But you can bet I’ll be posting them as soon as I can.

Lost focus

I have no reasonable excuse for where I’ve been. It’s not that I haven’t had anything to blog about. Owen has finally conquered his eating issues, and is talking like mad. I should be writing volumes about this. Reed has finished Kindergarten, and will be entering the gifted class for First grade full time in the fall. That should be cause for celebration. I’m not really sure why I haven’t been moved to talk about it until now. I’ve just been a bit pre-occupied lately.

So on to the good stuff. Let’s start with Reed. He finished Kindergarten with flying colors. His report card showed improvement in every single category (especially the social skills). Because some of the Kindergarten classes are integrated with 1st grade, his school doesn’t do Kindergarten graduation. I was a little disappointed, but I’ll get over it. I don’t think Reed would have enjoyed it as much as I would anyway. He was less than thrilled at pre-k gradutation last year. A little too chaotic and unpredictable, despite the numerous practice runs they did beforehand. But Kindergarten is a big step, and there ought to be something to mark it’s completion.

Reed spent last weekend at Papa and Nana’s again. It went much better this time. I explained to her ahead of time (again, but this time she listened a little better) about his need for structure and routine. Apparently they got the hint, because the weekend went off without a hitch. They even called me mid visit, to proclaim how fabulously he was behaving. What a relief. My wonderful little sister (the much-revered “Auntie”) came over to help me capitalize on his absense and try to bring some order to my chaotic house.

And now on to the even better news. Owen is talking! Seriously, totally vocal. Woo. Hoo. I cannot begin to express to you what a relief it is that all of a sudden, about 3 weeks ago, Owen started talking and he hasn’t looked back. The same week that he started talking, he also started eating. I have no earthly idea what was holding him up all these months, but who really cares? There is no feeling better than the first time your baby says sleepily “lev ooo” as he blows you kisses at bedtime.

I really can’t top that. Quite frankly, who could?

On being official

Grr, Blogger ate my post. I had a lovely though-provoking post all typed up and it has disappeared. I’m not sure I’ll be as elloquent the second time around, but here goes:

Reed had his appointment with the ASD neurology specialist this week, and he confirmed the school’s findings. We are now the proud(ish) parents of an Asperger’s child. This comes as no surprise, and I’m actually glad to have it over with. The neurologist declared that we were on top of things, and couldn’t suggest anything that we weren’t already doing. That felt nice. We will get an MRI done over the summer, but will wait until school is out before scheduling that. He also refered us to a research study on AS being done by the local university he’s affiliated with. I am still torn as to wether to sign Reed up for it or not. While the $3,000 or so in free testing is extremely tempting, it would require taking him off all meds for 3 weeks prior in order to be elligible. 3 weeks is a long time, and I’m just not sure we’re ready for that yet. I know medicating kids on the spectrum (or any kids for that matter) is contriversial, but it is what works for us right now. He functions so muchs better on his meds. He asks for his pill if I forget to offer it with breakfast. I asked him once why he wanted it when he reminded me. He answered simply, “It makes me not so much.” So there you have it. He is too much even for himself. When he can’t focus properly, he can’t put a filter on the world, and it overwhelms him. I’m not convinced it’s fair to anybody to deny him that. The answers the additional testing might provide, and the benefit to autism research are so hard to walk away from, though. At least I have some time to decide. We wouldn’t do anything until school is out anyway, so I’m thinking and praying on it hard.

I’m open to suggestions and advice. What would you do? You, my wonderful friends in cyberspace, are so much wiser than I in matters like this. Should we give it a try without the meds? After all, we might discover he can do just fine without them once he gets used it it. Or should we alow him his comfort zone for now?

Breaking news!

Observe the new blog title. We have updated out diagnosis. As of this past Wednesday, Reed’s PDD-NOS has been upgraded to Asperger’s Syndrome (he scored a 90 on the Gilliams’s scale, for crying out loud). I am quite pleased by this, as it will now be so much easier to get him the help that he needs. Not only does he now get his 1:1 mentor all day, every day, but it is so nice to talk to a doctor without that look of bewilderment on their face when you tell them your child has PDD-NOS. I mean, honestly, I shouldn’t really have to explain a medical condition to a doctor, should I? Asperger’s is so much easier to deal with as a parent.

We met with the boys’ pediatrician this afternoon to discuss the next steps for both of them. She praised our thoroughness, and declared that a trip to the neurologist is in order for both Reed and Owen. Reed to confirm the school’s results, and direct us in the next steps. Owen for a developmental evaluation. She said that if it’s bothering me, that’s good enough for her. I didn’t not have to sell her on why I’m concerned about him. She said that she trusted my judgment, and that if I felt there was reason to have him evaluated, she would gladly write the referral. Have I mentioned that I L-O-V-E our pediatrician? She is going on maternity leave next week. I am very happy for her, but cannot wait until she is back in the office. I sincerely hope that neither boy needs to be seen in the meantime, because I don’t really want to see anyone else in the office (and there are 6 other pediatricians in the practice who are all equally competent, but without her awesome bedside manner).

Okay, I’m rambling and probably not making much sense. Due to technical difficulties, I am unable to use my own computer, and it’s throwing me off a bit (some days I’m a little PDD-ish myself, lol). I will try to do a more competent job of updating soon.

Winding down and winding up

I got a call today from the school social worker. We scheduled his next IEP/MET meeting for next Wednesday. I am so excited, I am practically dancing around the house. I have been anxiously awaiting the results of his testing for over a month, and now it’s a mere week away. Am I a geek, or what?

Keep your fingers crossed for a productive meeting.

I must admit, though, that when the phone rang this afternoon, and I saw the school’s number on the Caller-ID, my heart sank. I was so sure they were calling for me to pick him up. This week has been difficult for Reed. His beloved schedule is in shambles. His school is having a special reading-themed week. The classroom has been transformed into a campground, complete with a tent in the middle of where the tables normally rest. The usual schedule does not apply. He is trying bravely to manage this unexpected change, and so far is succeeding fairly well. He has had a great week so far, and I am so proud. The teachers were on edge at the start of the week; worried about how he’d cope with the upheaval. I feel so bad that I doubted him, being so sure that he had fallen to pieces. But for now, all is well.

Countdown

I hate waiting. I’ve never been a patient person anyway, and all this waiting is killing me. Waiting for referrals, waiting for evaluations, waiting for diagnosis, waiting for appointments, waiting for results. It sucks.

I’ve been waiting for what seems like an eternity for the results of Reed’s special ed testing at school. They have 30 school days from the date of our first meeting with the IEP team to complete their testing and reconvene the meeting. Since our first meeting was on February 1st, and the school was out all of last week for mid-winter break, my calculations put that 30 day deadline at March 22nd. That feels like forever, but really it’s just a few more weeks. I am torn between hoping that they find that he does not fit the qualifications for PDD-NOS (because, well you know, I’m still in denial a bit here), and desperately hoping that they find something, since without some sort of concensus from the testing, he will lose out on much of the special services we’re hoping for (including his mentor, who has been our saving grace these last few months). The school wants to help him as much as we do, but without a qualifying diagnosis, their hands are pretty much tied. So we wait. And hope. And try not to strangle anyone bide our time.

I did get a little glimpse of a test result from his mentor a few weeks ago. We already knew that his reading is advanced (as well as his math skills). In our IEPT meeting last month, his teacher and mentor mentioned that he was reading at a second grade level, and his math was at a first-to-second grade level. Just before break, his beloved Mrs. C mentioned that they had tested his reading that day, and that he scored above second grade level. My little kindergartener is reading at a third grade level. Go figure! It feels good to know there’s something he doesn’t need help with.

Don’t mind the rambling. The waiting is making me a little batty.

The Big U

Update time:

First: The Big One (aka: Reed) has been to Occupational Therapy twice now. Not only does he love it, but his therapist loves him, which makes me love it too. They work great together, and she has an uncanny ability to get Reed to do things he won’t do for many people (like voluntarily writing, for example), which is awesome. I’ve never seen him bond to someone so quickly. It feels really wonderful to feel that we made the right decision in putting him in therapy. They are working together on small motor skills (because his penmanship is atrocious), and coordination (because the boy could fall off the Earth if he tried hard enough). She plans to tackle his meager sensory issues later on, after she gets a better feel for his needs in that area. For now, his sensory issues aren’t really impeding his functioning, so we’re going to let them slide a bit longer and concentrate on the more pressing matters. In other news, he had Behavioral therapy this afternoon, and it went well. I had a nice chat with his therapist, as did he. She grilled him (not really) about his recent indiscretions, and declared that we’d hold off on any new tactics until we get the results of his testing at school (they’re testing him officially for PDD and possibly Asperger’s to determine what special services he qualifies for through the school). She’ll be moving to a new office before our next visit, and I’m a little apprehensive about how Reed will adjust to the change, since he’s only just starting to get comfortable with this office, and we’ve been going there since August.

Now on to The Little One (technically named Owen): He has had 3 sessions of Speech Therapy, and seems to be improving. He’s starting to warm up to the idea, and seems to adore his therapist (this is not surprising, however, since he is the biggest toddler flirt I’ve ever seen). He repeated “up”, “ball” (“bah” anyway), and “kitty” (he’s been saying it at home for a while, but it has become quite clear in the last week or so), as well as correctly identifying (by pointing) Mr. Potato Head’s eyes, mouth, nose, shoes, and hair. Up until then, he had been able to identify some body parts (feet, belly, mouth, and nose) on himself, but didn’t seem to understand that everyone contained those parts. This feels like a huge milestone. I have no idea if it’s really as big a step as it feels, but who cares?

I think that’s about it for us this week.

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