Weeds only count as flowers when your children pick them

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Minor update on The Little One

Owen had his follow-up MRI yesterday afternoon. It went really well for him. Not as well for me, but no biggie. I sort of passed out watching them put in the IV. It was a combination of being mildly squeamish (although IV’s don’t usually bother me), overtired, and undernourished. Owen couldn’t eat for 6 hours before the sedation, and I didn’t want to eat in front of him, so I skipped lunch (I was planning to eat breakfast with the kids, but got busy getting everyone out the door on time and ran out of time).

A few minutes in a chair and I was fine, and I had a lovely lunch in the hospial cafeteria while Owen was getting scanned. It all works out.  *sheepish grin*

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. =]

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.

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?

The Unbearable Cuteness of Owen


Okay, so I’ve spent far too much time obsessing about Reed lately. Believe it or not, I do have another child. A perfectly delightful one as a matter of fact.

Yesterday, while reading my daily blogroll, Owen was sitting on the floor next to me playing quietly (for all practical purposes he doesn’t talk, so he’s generally a pretty quiet kid if he’s not upset about something). I looked over at him just in time to see him gently cradling a Cabbage Patch doll and lean over, give it a kiss, and pat it on the head. My heart melted.

Today we went on what we lovingly refer to as a “Daddy Adventure”. (Okay, it was a trip to Lowes. The boys enjoy it so much more if we call it an adventure). Since we needed items that are too large for our small cars, we borrowed my father-in-law’s pick-up. As we were driving to the store, Owen looked out his window and saw Daddy in the truck in the next lane. “Is DAD!” He squealed with delight. “Is Dad! Ish!” (Yeah, I know it looks like talking, but everything starts with either is [pronounced with a soft s, as in short for this or it’s] or ish [umm, I’m still not sure what ish means, but he says it an awful lot]) And there was much clapping and pointing. Hoorah.

A few days ago, he spotted our cat (whom he loves far more that any other member of the family). Normally this spurs his favorite word, “Kitty”. This time, however, he erupted with glee as he shouted her name, “Sessa!” (The cat’s name is technically Tess, although we generally call her Tessa). I tried to make a gigantic deal of this to encourage it to happen again. No luck, but still…

So you see, he’s a pretty great kid. Fun, smart, adorable as all heck. I really should talk about him more. He’s way less stressful.

Wondering

I have been agonizing over whether to have Owen evaluated for PDD. Deep down, I really believe he has something going on, I just don’t know if I can handle another case of PDD in this house right now. I am still reeling from Reed’s diagnosis (if you can call it that). And then I read over at Kristin’s place about how diagnosis brought their world crashing down. And I just don’t think I can handle that right now.

And yet, I know that early intervention is the key when dealing with kids with ASD. And I so want to help Owen. He seems so frustrated, especially lately.

The speech therapy seems to be helping. I’m really amazed that in such a short time (he’s only been there 3 times so far), he’s already imitating speech, trying new words, and babbling interactively. But he still doesn’t talk. He still communicates by pointing, and plotting to take over the world throwing a tantrum when we don’t understand.

He rarely responds to his name, and that’s usually only after shouting it at him repeatedly. I can’t tell if it’s his name he’s looking up for, or just his crazy mom shouting at him while he’s busy.

He is super sensitive to texture, and has recently adopted hand sanitizer as his new favorite invention ever. He wants to sanitize his hands every 30 seconds or so throughout the day, and gets irate if I don’t allow it. He won’t eat food if he doesn’t approve of it’s texture (and rarely does), and sometimes rejects foods on sight (or smell, I can’t tell which), without ever touching them at all.

He will only allow socks on his feet if they have shoes over them. He loves his shoes. Worships the shoes, but once they come off, the socks are franticly tugged at until they either come off, or he falls and hurts himself with the effort.

He carries things in pairs. We used to joke about needing “one for each hand” until it became redundant. Then I began to wonder.

There are lots of little things that on their own, are just little things. But once you get enough little things gathered together, you start to wonder. And wonder. And obsess wonder.

And so I wonder. He’s been making such great progress with his speech this month, that I’ve decided to put off asking for the evaluation for at least a few more weeks. And yet, I wonder if I’ll be blogging about this again at this time next year…

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.

Birth of a file

I did something very sad today. I started a file for Owen. Reed already has a file, but I was hoping Owen would escape the plethora of appointments that necessitate such a move. Reed’s file is around 2 inches thick, and includes copies of all the testing he’s had, relevant information sheets to his diagnosis, personal information (social security card, birth certificate), and anything else that may come in handy at a doctor’s appointment or school meeting. It’s come in handy more times than I can count, and it goes with me everywhere. Since starting the file, doctors have taken me more seriously, and things get done much quicker. Office staff have praised me for my efficiency (the file is organized by category, allowing me to jump to any document at will). It feels good to be in control of something.

I received the report from Owen’s speech therapist today. Since he will be starting ST next week, I decided it was time for him to have his own file. A place to stash referrals, reports, and the like. It was a sad decision. I am in mourning of the loss of his normalcy. I had hope, for a while, that he might be lucky and evade the life of chaos that plagues his brother.

The silver lining is that the therapist believes his stint in ST will be short. The report sums it up nicely: “should respond well to early intervention”. Hoo-Rah.

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