Cream of Potato Soup

Evan has an evaluation scheduled for this Friday. He's going to be seen by a psychologist here in town. The folks at the IU didn't think it was wise to wait several months to be seen at Children's. This is fine by me--it's less of a hassle, and I don't think it makes much difference who sees him at this point. All we need is a concrete diagnosis so we can continue the excitement that is special education.

In preparation for this eval, I was sent a twenty page packet of forms to fill out. Some are simple signatures, others are questions about Evan's birth or family or history, and still others want me to give information on his current behaviors. It can be annoying to write the same information over and over, but hopefully this time it will get us somewhere.

On the last page of the packet of behavioral evaluations, there is a list of about 300 words. They're every day words grouped into categories like food and family and animals. They want you to circle each word your child uses appropriately in conversation, not ones he just understands or recognizes when you say them. Out of the 300, there are only three that Ev really didn't use--coffee/tea (why would he?), shut up (because he knows better) and the name of a pet (we don't have one). So I thought that was pretty good.

Even better though was last night when Mike was looking over this list of words. He showed it to Evan, and Ev began reading the words himself, right down the list. Mike and I looked at each other in amazement. We knew Ev could sight read some words, but not this many, and not out of context. He also tried to sound out words he didn't know using the first letter. I was so impressed--I couldn't believe he's been figuring out how to read all on his own. He was proud and embarrassed to have us notice he was reading.

Ev may have his troubles, but it's nice to see him doing so well in something. He's a smart kid, but it's taken us a while to figure out how to let him show it. I hope we keep getting better too.

Posted by jenny at 11:37 AM | Permalink | Comments (2)

I was feeling like I wanted to climb the walls yesterday--the rotten weather and too much time in the house with kids was making me a little crazy. Mike and I were also picking at each other a lot, and I knew we had to do something that would take the edge off. So we bundled up the boys and headed down to Pittsburgh. We called our friend Alan on the way down (we phoned Beth too, but she was busy), and within an hour we were meeting him at IKEA.

I know a lot of people (especially those who live in Pittsburgh) wouldn't be caught dead in Robinson on a Saturday, but we're crazy like that. And we had our eyes on a bunk bed for Evan. The bunk bed was Evan approved, but it wouldn't fit in our car with all four of us, so we're going to have to think of something else on that front (to ship it would cost as much as the bed, we checked). But the rest of the day was a huge success. Evan got to spend an hour in the "ball room" at IKEA, and Grady got to roll around on some soft beds when we were trying things out. Then the five of us headed to Eat N Park for a nice dinner, and we parted ways with a promise to get together again soon.

The day out was just what we needed, and I'm glad we made the trip. On the way home, as both boys slept, Mike and I got to talk a little bit. We were both amazed at how good the boys were all day. Evan had some small disappointments through the day (when he had to leave the ball room, when we told him he couldn't have a game he wanted), but he didn't throw any tantrums or get out of control. He just got a little teary, and then recovered.

Ev and Grady both did very well at the restaurant too. I have to say that shocked me--we used to avoid restaurants like the plague because they were an invitation to disaster. But Evan did great, from ordering his food to staying in his seat. G was very good too, happily sitting in his high chair as I fed him little bits of food from my plate. It was just so pleasant to be able to eat somewhere again besides McDonald's. Family-friendly establishments, here we come!

Mike pointed out that it helps that we give Evan ownership now. I think he really likes that. He was able to choose what he wanted to eat and drink, and he told the waitress himself. He was also given choices throughout the day, and we sometimes listened to his suggestions, and that seems to make him feel really good. It's a give and take that wouldn't have been possible a year ago, but with Evan's improved communication skills lots of doors are open that were not before. Is this the kind of fun stuff other parents have always been able to do with their kids? It's so nice to be in that place now.

But I've rambled on to long, and now Evan is up and he's rattling off his choices for breakfast. Time for me to go.

Posted by jenny at 8:31 AM | Permalink | Comments (1)

For the last couple of days, a kid has been coming to our door and asking if Evan can come out and play. I think he's new to the neighborhood, as I've never seen this kid before. He must be about 8 or 9, and sometimes he has his little sister with him (she's around 6 or 7 I guess). So every day I say no, and every day they hang out in our front yard for a while before going on their merry way. Finally yesterday I told them Evan would never be allowed out to play with them and that they shouldn't ask anymore. It was getting on my nerves, and each time they came to the door Ev would get wound up and want to go out, blizzard or not.

Now, I don't want to be the bitch here, but if I let Evan out to play he might never come back. Okay, so maybe that's not true, he probably would come back, but I still don't trust him to be outside by himself. And I don't trust him with older kids. I don't think I'd even trust him outside by himself in a fenced in yard, let alone roaming around the neighborhood. At what age can kids do that? Five is too young, right? But then I see kindergarteners walking to school by themselves. At some point he's going to be old enough to be out on his own to play, but for some reason I can't ever see that day in my head. He's going to be locked up with me until he's 30.

This comes to mind because Ev has become very independent in the last month or so. He wants to take charge of all of his self-care--washing and wiping and dressing. I'm good with that, and he's doing a great job so far. But I'm also not allowed to walk him to the bus anymore (no biggie, as it picks him up right in front of the house). The last time he had therapy, Ev asked me to drop him off at the door and come get him when it was over. He also wanted to go visit Mike at work, and I was supposed to wait in the car with Grady while he went. It becomes difficult to convince Ev that this isn't possible, that if Mommy let him roam free I might end up in jail.

I'm trying to figure out ways to give him that freedom without making me an absolute wreck or getting Ev mowed down in traffic. It's a work in progress, and one that I think is going to be an issue around here for many years to come.

Posted by jenny at 7:26 PM | Permalink | Comments (1)

Today Evan turned five. We celebrated quietly at home with three of four grandparents (Mike's dad is in Taiwan) and one uncle (Timmy). Ev ate cheesy poofs and chocolate cake, and had to stop in the middle of opening presents to drink a juice box because he was so thirsty. He had a blast playing with Daddy and Uncle Tim, and he loves his new walkie talkies and books. I think he really enjoyed having so much attention--he started to cry when everyone was getting up to go home. No hysterics, just a few silent tears because he didn't want his day to end. It was too sweet.

Now I have this five year old boy on my hands. More than anything, that just makes me feel really old! It seems like another lifetime when I started this blog, when I was expecting Evan, when he was born so early under such frightening circumstances. It's hard to reconcile that tiny three pound baby with this tall, lean boy who runs and jumps through the house, chattering all the while. Back then, I could never have imagined this Evan, with five years under his belt, ready to take on the world (or at least kindergarten). It's pretty amazing.

So here's to another wonderful year with our not-so-little man! I know this one, like all the others, will be full of fun and surprises. Happy 5th birthday, Evan!

Posted by jenny at 7:05 PM | Permalink | Comments (1)

Evan's IEP meeting yesterday took nearly two hours. It was exhausting. So much had to be discussed--goals for preschool, issues surrounding kindergarten transition, where he should be evaluated next, what school he should attend. My head was swimming when I left there, and it hasn't really stopped yet.

Right now I can't do much of anything--I need to wait to be contacted by the person in charge of Ev's transition. I'll need to sign forms that will allow him to be evaluated in his preschool class. After that, I can tour his possible school placements, and at the end of March I'll need to schedule another evaluation at Children's Hospital in Pittsburgh. Once all that is done, then we get to decide where Ev will begin his formal education.

Honestly, the entire process is draining me, and that's only thinking about it! Everything seems like such a huge production right now, and it's almost worse that I can't start doing anything at this time. Hurry up and wait, then rush to get every detail figured out. I think mostly I'm afraid--I want to make sure we make the right choices for Evan, and I am worried that we won't.

I'm going to try not to worry too much about that over the weekend though. This time is for celebrating, not watching me foam at the mouth. Evan's turning five, and it's time for a party with brown cake and brown frosting and bowling candles.

Posted by jenny at 9:45 AM | Permalink | Comments (1)

This is Grady's anthem these days, long strings of "adah dah dah" with some screeching thrown in for good measure. I pity those who call me on the phone. But it is terribly cute, and he's just so pleased with himself, so I'm loving it too.

G's also pleased with his newfound abilities to crawl properly (at least for short distances, until he goes back to his commando crawl) and to get himself into a sitting position all on his own. I turned my back for a minute yesterday while G was on his belly, and suddenly he was sitting up and laughing. He learns these tricks far too quickly. If he had his way, he'd be cruising on furniture full-time, but I can't have that. He's still too unsteady, and I'm not about to risk a head wound. All this at just 7 months, what's next?

In Evan land, we're trying a new system to limit his screen time. With Ev's love for all things computer and video, and our being stuck in the house for the winter, it's easy for his viewing time to get out of hand. So now he gets a set amount of time per day, and a kitchen timer sees that we stick to it. Ev knows that once the bell rings, his time is up, and once he gets three check marks, he's done for the day.

This started yesterday, and it's going better than I thought it would. Evan didn't whine or complain for more time, and he even helped me set the timer for him. Unfortunately, he used up all his "credits" by 10 am, so the afternoon seemed long to him (and me too, honestly). But we played a lot of Candy Land and Chutes and Ladders, and played with his baby doll for a while, so it was okay. I'm sure today will be even better because he's been at school this morning, and we have some fun activities planned for the afternoon too.

Now the bus is outside and beeping the horn, and my time as a mother of one is up for today. And so is my computer time--I think I need to get a little buzzer for me as well!

Posted by jenny at 11:17 AM | Permalink

Mike is behind me, watching the season premiere of 24. I never got into that show--too violent for my tastes. But he loves it, and he's watching happily, and the boys are sleeping quietly in their beds (which makes me happy). A good way to end a pretty low-key weekend at our house.

Yesterday we ventured down to Grove City. I was feeling a little stir-crazy, and I wanted to get out of town for the day. I was also hoping to find some new sneakers (I did not). But Evan scored at the Old Navy outlet--he picked out two shirts and a pair of pants that he liked, and we also got him his first pair of boxers. They are too cute! Just standard cotton boxers, but I can't get over them. It's so funny to see his skinny little butt in boxers. He seems to really like them, so there may be more in the future.

This week is going to be a busy one. Evan has three days of school, three therapy appointments, and he wants to take a treat to school for his birthday. We also have his IEP meeting on Thursday, my dad's 60th birthday party Saturday, and Evan's birthday Sunday. On Sunday night, my head assplode. It should be a good time.

Posted by jenny at 9:32 PM | Permalink

I find myself not doing things by the book so much with Grady. I'm following his lead more, and I don't worry about every little thing. Sometimes this can backfire, like when Grady was sick--Mike was pushing me to take him to the ER, and I kept insisting he was fine, it was just a cold and we would wait it out. I'm glad Mike pushed, because I don't know how serious things would have gotten, and we could have ended up in the hospital a lot longer than five days.

Most of the time though, this relaxed attitude is working out for us. I find Grady to be a pretty good baby, going with the flow and (usually) happy about it. He's sleeping through the night, and by that I mean he starts with a 4-6 hour stretch in his crib and then wakes to nurse a bit and spends the rest of the night in bed with us. This works out great, as I get some good rest and I also get that sweet snuggle time. With Ev, I was obsessed with when he was going to stop night waking, and when he'd sleep in his own bed. This time around, I'm enjoying having G in our room because I know it's going to be over before long.

I'm also not obsessing about the food thing. With Evan, I followed a strict schedule of when to start solids, did all the fruits and veggies by color, and was terrified he'd choke on a Cheerio. Grady's been slow to start solids, and he's not really a big fan of all things pureed. I'll give him a few more weeks I think before it's on to the good stuff. He seems to prefer the savory flavors--he's tried tomato sauce and Italian dressing, and he loves a good dill pickle. He's gotten a taste of cake frosting and chocolate too, and he liked both--he even tried to steal a KitKat from Daddy over the holidays. That's not to say G's going to be eating lots of junk, but I'm finding he prefers a taste of mashed-up veggies from our tofu stir fry to that jarred business. And I'm good with that. Wait until he has my pork and sauerkraut.

Posted by jenny at 10:01 AM | Permalink

Life slowly returns to normal here--I took Evan to a birthday party yesterday, and today he's back at school. Mike's working, and Grady naps as I gather the laundry from every corner of the house. The sky is gray and the wind is howling, and I think maybe winter is finally coming after all.

I had both boys back at the doctor on Friday. Grady was getting his follow-up after his hospital release, and all was well with him. The doctor said his lungs were clear, and his ears almost completely healed. Evan had been complaining of ear pain himself on Thursday night, so I dragged him along too. Turns out his double ear infection of three weeks ago was raging since he'd never taken any of his antibiotics. The only other option was two painful antibiotic shots, one in each leg. Evan tearfully agreed to this, and the deed was done. He handled it well, but limped the rest of the day and spent a lot of time just laying on the couch. A recheck this morning found his ears were much improved, so I'm glad to have that taken care of.

Grady's now seven months old. He's become quite the chatterbox, sharing his opinion on nearly everything using a variety of vowel sounds and your occasional b or d thrown in for good measure. G's commando crawling with great speed now--he can make it across the room in record time. He's able to get up on all fours and rock, but he'd rather lunge forward than crawl properly for the time being. He's been getting "solid" food for nearly a month, but his illness was a setback, so he's still only had cereals (rice and oatmeal), bananas and carrots. He's not a big fan of any of it, and I think he'd rather go straight on to table food.

Evan's doing pretty well also, aside from the recent shots. He's getting retested in speech and OT so we can write new goals for the coming year, and he has his IEP meeting next week as well. There's going to be a lot of evaluating and stuff as we get ready to send him to kindergarten in the fall, so this is only the tip of the iceberg in that department. Ev's really looking forward to his birthday, at which he wants a "brown cake with white frosting and bowling candles". He also wants to go skating, and he would like lots of presents, though he won't share what he'd like the presents to be. My mom threatened to buy him underwear if he doesn't come up with something, which Evan thought was hilarious.

And that's us so far. Everyone seems to be feeling well for now, and we're all gearing up for Evan's big fifth birthday in two weeks. It's going to be an exciting January, without a doubt.

Posted by jenny at 9:20 AM | Permalink

We're home again. Grady was discharged from the hospital yesterday evening, having proven he could handle life without supplimental oxygen. Last night was scary for me though, as G slept unusually well and I woke every hour in panic. Today I'm feeling more confident, as he's happy and playful and mostly congestion-free. We go back to the doctor tomorrow for a follow-up, and I'm hoping that will be the end of this chapter of our lives. 2007 has been a crap year so far--nothing like ringing in the new year passed out in a pleather recliner, that's for sure.

The holidays and hospitalization have left me feeling disoriented and disorganized. When G was in the hospital, all I had to do was focus on him and helping him get well. It was easy, and completely mind-numbing, to just sit in the chair by his bed or rock him or change his pants. Now that I'm home I find myself overwhelmed by the things I could or should be doing. It's weird--five days is really not a long time, until you're sitting in the hospital. I find myself wondering how I did it for 33 days after Evan was born. That seems like a lifetime ago.

I feel lucky that Mike's mom was able to stay with us while G was in. It helped so much knowing Evan was having fun, and she even did laundry! That was wonderful. Having Mike be able to spend much of the days with us meant a lot too. No matter how crummy things get, when he's with me nothing seems quite so bad. My dad helped out as well, staying with Ev the first afternoon, and coming down with Jerry and Tammy to cook a pork roast for us and give Mike's mom a break. It's great to have such supportive family close by.

So now it's back to reality, having missed the end of the holidays and the first days of the new year. I'm anxious to feel normal again. Let's get on with the show.

Posted by jenny at 7:32 PM | Permalink

Grady made some improvement today - his oxygen level has been lowered and he only needed 2 breathing treatments today. In fact, the respiratory therapist cancelled the evening one as he sounded clear, that's good news.

I can also tell G's feeling a little better - I think he's getting as stir crazy as I am (neither of us can match how Jennifer feels right now). He was much more active and alert today - after a diaper change and before we could get the next one on him he was up on all fours ready to scoot around the little metal prison crib he's in. He also wants to stand up in there, but every time he does he sets off his saturation and pulse monitor thats on one of his toes.

That monitor is loud, and I find myself hearing its beeps and bells everywhere I go - I swore I heard it in the Walmart parking lot tonight as I was out getting supplies to restock the troops at home. For weeks after we took Evan home from the NICU I remember hearing the bells of his alarms at the time. We got very good at recognizing who's alarms were whose in the big NICU area.

In fact, a lot of this reminds me of Evan's time in the NICU. This is much easier compared to all the uncertainty of Evan's birth but it's still nervewracking. It's especially hard for me to leave the two of them there - it's a catch 22. I feel bad about leaving Evan all day and seeing him just long enough to read him a book and put him to bed but I feel awful about leaving Grady in the hospital. It's a no-win situation.

So, we'll see the doctor again tomorrow (Tuesday) and hopefully we can continue to ween G off the oxygen and get him home on Wednesday. Keep your fingers crossed.

Posted by Mike at 11:00 PM | Permalink