Cream of Potato Soup

Though this week has been a short one, it's been busy. Evan and I have packed in OT, swimming, and breastfeeding group at the hospital already, and today we have our last swim class, speech therapy, a haircut, and a trip to the store. It may not sound like a whole lot, but with a 22 month old it's not the easiest day! Not to mention we have to sneak lunch and a nap in there somewhere! Daddy has also been busy at work, putting in late nights because he was gone last week. I think we'll all be extra thankful for the time off the next few days.

Happy thanksgiving to all of our readers--tomorrow we're headed up to Erie to spend the holiday with my family. Then Friday morning we're headed to Ohio to be with Mike's and celebrate Evan's grandma's birthday (I won't tell you how old she is). It should be a nice couple of days. And I forgot to mention that Monday was my grandma's birthday--she turned 97! Happy birthday Grandma!

Again this year we have so many things to be thankful for-- good family, great friends, a warm home and food on the table, and our wonderful son who brings us so much joy every day. We are blessed.

Posted by jenny at 09:33 AM | Permalink | Comments (1)

Yeah.

So we got a big packet full of forms to fill out today from the feeding program that Evan is supposed to go to next. Every time we go to a new doctor or therapist or specialist, we get one of these great big packets to fill out. Name, weight at birth, gestation in weeks, physical problems, pregnancy difficulties, current medical issues, when was his last vision check, what is his speech therapist's maiden name, when was his last bowel movement and could you describe its color and texture in the box below.

Argh.

I try to remain calm, answer all questions appropriately, and keep my printing neat. It is not easy.

Posted by jenny at 05:36 PM | Permalink | Comments (1)

Yesterday we got two interesting pieces of mail. The first was the three page report of the doctor we had seen in Pittsburgh, and it was nice to reread her findings and comments. It was good to read what his doctors and therapists will be reading, and she referred to Ev several times in the letter as a beautiful and pleasant little boy, which was just so sweet to hear.

The other bit of mail was from the Hamot NICU. I was expecting our eval packet for Ev's next follow-up in December--instead we got a letter that told us that the NICU follow-up clinic was not going to see any more graduates after November. I was so upset at this, I almost cried! I know that sounds so dumb, but I really liked going back there every 6 months or so to show off Evan and see his nurses and therapists again. Not only that, but they are the ones in May that said Evan should be reevaluated for speech therapy, after he had just had a fine eval in March. And they were right, and here we are months later with therapy and all that going on. If they hadn't said something, it may have been several more months before Evan was seen again. I am a little sad that we won't be going back there anymore, and I'm hoping that no kids miss out on treatment they might need because of it.

Posted by jenny at 03:24 PM | Permalink | Comments (0)

Daddy's home from Vermont, the curtains are finished and up, I painted both bathrooms, Ev's in the tub, and all is right with my world.

Posted by jenny at 09:56 PM | Permalink | Comments (0)

As reported a few days ago, this past weekend was a very relaxing one. My mom came down Saturday to play with Ev for a few hours while Mike and I went out. It was great--we had a nice lunch, bought shoes, got haircuts, all without rushing on account of you-know-who. Sunday we never even got out of our jammies, so I think that says it all.

After all that relaxing, we were up early Monday morning to take Daddy to the airport. Mike's at a weeklong seminar in Vermont, and Evan and I are holding down the homefront. We're busy as usual with swimming and therapy, but there is an added dimension this week. Mike's mom is staying with us--partly to give me a little break from the little man when I need it, and partly to help me sew curtains.

Yes, you read that correctly. Though I haven't touched a sewing machine since 8th grade home ec, I'm sewing curtains for our house. It's kind of fun--not too difficult, and very satisfying when you have the finished product hanging in your window. I'm feeling ultra domestic these days. It's nice too because I feel kind of like I'm practicing a lost art. It's too easy in these days of Wal Mart Super Stores to go and buy something and be done, so I think sewing and all those other homemaking traditions have gone by the wayside. I'm pretty pleased with the results so far, but I have a lot more cutting and measuring and stitching left to do before I'm done.

Wish me luck.

Posted by jenny at 02:58 PM | Permalink | Comments (3)

Well, not really, just wanted to get your attention. Mike did a bit of work on this site tonight and I thought I'd point out the additions he made.

1) He restored the image gallery. There is a link to it on the right side of the page. This will take you to a separate page where all of Ev's pictures are listed in chronological order. Take a peek and stroll down memory lane! There will be a new Fall 2003 gallery up soon.

2) He put the archives on a new page as well. Clicking the link on the right will take you to the archive listing, from July 2001 to the present.

3) Mike also put a link to Evan's Amazon wish list on the right. Several people have asked for ideas for Christmas and birthday gifts for Evan--the list may help give a general idea of the types of toys he's into now or what size clothes he's wearing. Evan's been awfully good this year, so we're hoping that Santa will make a stop at our house on Christmas Eve.

That's all for now. We're having a nice, relaxing weekend, and I'll write all about it later.

Posted by jenny at 08:56 PM | Permalink | Comments (2)

Today was Evan's big evaluation at Children's Hospital in Pittsburgh and we woke up anxious and nervous to the first snow of the season. Evan was a little afraid to go out the front door because of the big white flakes and high winds--I guess he doesn't remember all that from last winter. But we were bundled and packed and so we headed out to the highway.

Evan slept most of the way down, and we got there early because we allowed some extra time for the bad weather. We also often forget that we live in Meadville now, subtracting 40 minutes from our usual drive to Pittsburgh from Erie. We cruised into Oakland an hour early, just as Ev woke from his nap. The three of us found the office building we were looking for, and decided to use our extra time to grab a bite to eat before the testing began.

The child development unit at Children's was a very nice, brightly decorated place--Evan was thrilled to see all the cool toys and kid sized chairs and tables in the waiting room. After filling out some paperwork and a short wait, we met with the doctor who would be evaluating Ev. She was very nice and welcoming, and made us feel immediately at ease.

The evaluation itself was much easier and less structured than I had imagined it. The doctor sat with us in a small room and interviewed me and Mike while she watched the way Ev interacted and played while we talked. We told her all about our concerns and what we have observed with Evan, and she asked questions when she needed more information.

After that, she got a few puzzles and games to play with Ev, which he was more than happy to work on with her. She did a short physical exam and was then ready to give us her take on what was going on with Evan.

She gave Evan a preliminary diagnosis of oral coordination disorder and static encephalopathy. I suppose you're wondering what that means. Basically, it means for some reason his mouth isn't working quite the way his brain wants it to, and the problem is not getting any worse. In all, it's a pretty good diagnosis to have--it means that he's a little behind in his expressive language development, but it should be something he can overcome with therapy and a little extra help. The doctor wasn't concerned that he has any other underlying problems, and she said that he really was cognitively and socially appropriate for his age.

Where do we go from here? The doctor gave us a referral to a program in Squirrel Hill that will address both his speech delay and the problem with certain textures. We'll make an appointment to see them, and it should be a one time visit where Ev can be evaluated and they can then make recommendations to his therapists here in Meadville about how they can best tailor his therapy to suit his needs. He'll continue with his weekly therapy sessions, and we'll go back to Children's in April just to follow up and make sure he's on track.

Mike and I are both relieved--it's nice to have some idea of what's going on with Evan. It was also so nice to hear from someone that he's doing well--it's been so long since we've heard that. Most often we hear "he's not doing this right," or "he's so behind in that,"--it's so refreshing to hear, "he's doing great, i'm not that concerned about his delay." And to hear it from someone who obviously sees a lot of kids with different problems and diagnosis.

So we're happy, and we'll keep working with Evan to help him learn to communicate appropriately. I'm feeling confident that things are only going to get better from here.

Posted by jenny at 10:02 PM | Permalink | Comments (7)

I've been debating about whether to write this or not. It is about as personal as I can get, but I've told you all everything else that's going on in our lives, so I may as well share this too. Beware some mildly graphic content. Here goes.

I know everyone was very helpful in giving us their opinions on the topic of whether we should have another child or not. What I didn't share with you is that I was already pregnant when I asked you that question (though I didn't know it yet). The decision was basically made for us when we got a little surprise at the beginning of this past week. I had been feeling crummy for a few days when I decided to take a pregnancy test, and there they were, two pink lines. I wasn't really surprised at all--I've been pregnant twice before and I know what it feels like, and I was pregnant. Headaches every day, dizziness, nausea. I didn't need a test to tell me what I already knew.

Though we were a little surprised by the news (Mike was--especially when I told him by shoving the test stick at him while he was on the computer) we were excited too. We were thrilled that the baby would be due in July, when Evan will be 2 1/2, and I began imagining birthday parties in the back yard. We started arguing over names immediately, and Mike made me a super cool graphic for this web page announcing our baby sequel. We were planning fun ways to tell our families the news at Christmas.

You'll notice that I'm talking in the past tense.

This morning I started to miscarry. I know that feeling too--the stabbing cramps, the blood, the sick lurch of your stomach when you realize what it means. I came back to bed and told Mike, and we hugged, and I got in the shower and cried. On the bright side, I was only five weeks along so this baby was no bigger than an apple seed. The bleeding was less than my 8 week miscarriage, when I actually saw and held the little inch long thing that was to be our child. That was hard, and this is too, but I'm feeling okay. Not great, but physically this was definitely less draining than the last time.

We're disappointed, and more than a little sad, but doing okay. Most people say in this instance that it just wasn't meant to be, and that's all you can say. It doesn't make you feel any better really, it's just a way of assuring ourselves that there is some bigger plan. We keep trying to think of the good in this--little things like now we'll have more time to focus on Evan and what he's going through, this will give us more time to think about another baby, and the fact that all my maternity clothes are on loan to someone else right now so it's a good thing I don't have to ask for them back.

So Monday I'll go to what would have been my first prenatal appointment, and instead I'll get blood work done to make sure my HCG levels are going down. I'll be jealous and angry for a while when I see someone who is pregnant, I'll cry for a while over the smallest thing. I'll feel like a failure when I think of the babies my body couldn't hold, including the baby who is asleep in the next room and having to go through all this testing and therapy because he was born too early. Some of my feelings will be irrational, and I won't be able to help it. But it will get better.

"Nightswimming" by REM is on my iTunes right now. This song always reminds me of Lauren, I'm not sure why....somehow, thinking of her is so comforting. Some of you may think this is dumb, but I imagine her as the mother to the babies I lost. I imagine her looking after them in heaven, and that someday she and I will meet again and she'll tell me all about the babies she's been taking care of for me. It makes me happy to think of someone I loved so much taking my place.

Posted by jenny at 11:59 PM | Permalink | Comments (6)

In preparation for next week's trip to Pittsburgh, we took Evan to see his new pediatrician here in Meadville. Needless to say, it didn't go well. To be fair, I think Evan was very tired, since he had just had swimming class before we went. We did the usual visit things - weigh-in, measure, poke and prod. Then even gave Ev a TB test (which we need to go back on Saturday to have them look at).

The new doctor is nice enough, I guess, but its hard I know for Jennifer to have to recount everything we've been through since Evan's birth, including his time in the NICU, delays, therapies, problems, texture issues, etc. Then we get to have her tell us what she thinks is wrong, and then we need to deal with all those emotions again.

The doctor wants to check Evan's hearing, as she wants to start ruling things out when it comes to his speech delays. She's worried, like we are, about the texture stuff.

The next few weeks are going to be difficult, methinks.

It really is frustrating to see people we know who's kids are normal, and doing normal things. They're walking and talking, and doing everything that I wish Evan was. I want nothing more for him then to be healthy and happy, and I feel like I've failed monstrously because he has problems. Or at least the doctor and therapists tell us he does. I live with him everyday, and I don't see a kid who has gross motor delays. I see a kid that loves to run around and play outside, and play with the knobs in the car, and play on the computer. I see a kid who knows what we mean when we tell him things, and tells us, in his own ways, what we wants and needs.

I don't know, I'm not thinking rationally right now. I should probably stop since I don't think I'm making much sense.

Posted by Mike at 04:22 PM | Permalink | Comments (5)

Yes, I think they have arrived.

Evan has become a most unmanagable tot in the last few days. He likes to fight with us now--throwing fits when he doesn't get his way, being uncooperative at changing time, arching his back and screaming when we try to put him in the car seat. A simple outing to the store becomes a great big hassle when Evan decides he doesn't want to play along.

It's even gotten to the point that he will bite me or pull my hair when he gets mad, which is something he's never done before. It's very frustrating to both of us, because then I start to get upset too and that's not good. I think it's really starting to bother him that he can't communicate effectively with us. He gets so angry because we don't understand what he wants, and then he just melts down. It's getting tougher to deal with.

Ev still has his good times (which is great), but his bad times are that much worse now. I hope we find a solution to all of this soon, and bring back the happy Ev.

Posted by jenny at 09:16 PM | Permalink | Comments (8)

Sorry I haven't posted this sooner, but we've been pretty busy the last few days. I know everyone has been dying to hear about Evan's Halloween.

Trick or treating in Meadville is on the Thursday before Halloween, so we made sure we were home with a bowl full of candy for the big event. We got no trick or treaters. None. I guess the five houses on our street are just not worth hitting in the quest for candy. More Milky Ways for us.

Friday we headed up to Erie to show Ev off in his Halloween finery--he was Superman. He loves his costume, and I love it because it doubles as jammies. We stopped first at Kaitlyn's house for a visit, then on to my mom's, my aunt's, and my dad's, and Cara's folks as well. Whew! That was quite an evening, but Evan had fun and got lots and lots of good treats (which weren't all candy, thank goodness).

The funniest bit of the night was Evan's "candy dance". Every time someone gave him a piece of candy, he would do this little dance where he stamps his feet in place very fast to show his great excitement. It was an absolute riot.

Ev crashed into a sugar induced coma on the way home, and I tucked him in bed to sleep it off.

Posted by jenny at 09:19 PM | Permalink | Comments (1)