Yard Work

Travis enjoys watching the yard people in our neighborhood every Thursday. For those of you who aren't familiar with these services, they are usually pairs or more of men who travel around town in a truck pulling a flat-bed trailer with various pieces of yard equipment: lawnmowers, edgers, blowers, rakes, hedge trimmers, etc. Some of the trailers are more make-shift than others. They are very efficient and are actually fun to watch sometimes. If Travis had his way he would follow them around all day from job to job. There is one particular company that does several yards on our street so they are here for at least an hour every Thursday.

So we were out watching them yesterday, and over the summer Travis has invented his own versions of their equipment. He has the little lawnmower, which he loves to use, but yesterday he noticed that his lawnmower doesn't have a bag on the side, so I had to tie a trashbag on the side and "empty" it a few times into a pretend trashcan. And the men use gas-powered blowers that are packs they wear on their backs, so last week Travis asked for his backpack to wear as his blower and the strap that adjusts around his shoulders is the blower nozzle. And we have to gas it up from time to time when it gets low. And the small rake that we have he uses as an edger, and he had Randy attach a small piece of the plastic string that edgers use so that it's more realistic, but yesterday he said that it needed something on the back like the guys' edgers (the motor). I am stumped on how to recreate that, so if anyone has any ideas, we're open. I am debating getting him one for Christmas, but I love his imagination so much that I hate to squash it.

And this is Justin. It doesn't need any explanation, but I think the caption should be "Look Mom, no feet!"

Genetics Follow Up

I am good at going to all of Justin's appointments. I even went the the first pre-op day of testing all by myself. But I have not been looking forward to this appointment. It's where it all began. The other parents with whom I have spoken remember day or the way that they found out about their child having Down syndrome. And I remember that too, very distinctly, but I remember this day too because it was the day that really wasn't supposed to be anything. We didn't tell any family because we didn't want to worry them for nothing, and in my mind, this was just one of the things that we had to check off our list. This was a nothing. If ever I wanted anyone to laugh at me, this was the day. I wanted the doctor to say that I was just a crazy over protective mother.

We took EVERYTHING with us to the appointment. We had the stroller, the baby carrier, 2 diaper bags, toys for Travis, and snacks for Travis. We hauled so much stuff in with us they probably thought we were moving in! And the side of the hospital that has the genetics clinic overlooks the new hospital they are building and at that time, it was not even a complete hole yet. Travis loved looking at all the equipment; it's his favorite to this day; and I prayed that we would never have any reason to see that building beyond that day as it was being constructed. The geneticist we saw is so wonderful. He is so personable and helpful and willing to listen. After his exam he said that he could see what we saw, and for the first time he actually pointed out the traits that Justin has that are Down's markers, but he also said that these things exist in the general population, so it's not definitive without a genetic test. He said that it could go either way. So we had the tests. There were actually two, one for Down specifically, and one was for some other genetic anomalies that he also considered to be possibilities. So we had to get blood drawn. I sat with Travis as he ate his snack as the nurses debated how much blood they could take from Justin given his weight. And then we were sent off to wait. At that point they said 50/50 he has Down syndrome. When we left there were some fish tanks that blew bubbles from the bottom and plastic fish floated in the bubbles. Travis didn't want to leave, and I said that we would come and see them another time. I wanted to take those words back as soon as I said them. I didn't want to go back EVER! But we were back, 2 weeks later, to hear about our son's diagnosis and to understand at least a little, what it meant for us.

So today, we were back where it all began. The hospital is coming along nicely (our room during Justin's surgery was actually facing the construction site, so Travis was able to watch the trucks whenever he visited) and the fish are still bobbing along, and we are a bit further down the road that God has put us on. We don't understand much more about what this all means, but we are more confident that God will carry us through. We figured out that the appointment today was more for us than for Justin. The doctor said that he felt like he kept dashing our hopes because first he said that he didn't know about the DS and then it was, and then that he didn't hear a heart murmur, and then it was and that it needed surgery. I think today was to end on a high note, and to ensure that we are doing the things that need doing to care for Justin. He just watches out to make sure that we know what's coming and what to consider for his future care. We have our appointment at the DS Clinic on Monday and he said that they kind of overlap purposes, so we don't have to see him anymore, which he is sad about, because Justin is so cute! Yeah, we know!

I know this is a bit random. Thoughts have been floating through my head about this for a while as I recalled that day and I just can't explain my feelings. Maybe they will become clearer as the years pass. Right now it's still raw. I just know that I love my baby and I love the one who sent him to us. I think that's enough for now.

Blessings

Sometimes I get overwhelmed by the enormity of the responsibility of Justin, and I am afraid that I seem too negative. The doctor today (in her delightfully enthusiastic way) reminded me just to enjoy Justin. She was talking to Justin and she said, "Now your mommy can have fun with you." And we do have fun, don't get me wrong, but the parent in me worries and frets too much, no matter how much I pray it seems. But I wanted to share a wonderful blessing we received from our church family. The 1st through 5th graders during the Sunday worship service wrote cards to Justin. And we have an entire envelope FULL of the sweetest, most innocent cards you can imagine. Here are a few:

• I am happy you are back at church. I am glad you are feeling better. I had a friend that had that happen to him. His name is Will.
• It's beter to be better little Justin DeCarlo.
• Dear Justin, You are one awesome little guy. I am happy your feeling better!
• Hay Justin, Glad you'r in church today. God is looking down on you.
• Justin, I hope your doing good and remeber God is with you.
• Dear Justin, I'm glad you are okay, you must be really happy to be back in church. You've done what I've never had the courage to even think about going through.

I didn't edit the spelling or grammar. I think that adds to the charm. Pretty special family we have, isn't it?

ENT Follow Up

We were back at the ENT this morning. The appointment went very well! Justin is nearly 13 pounds, up from his post-surgery low of less than 10 pounds. And his ENT thinks he is doing wonderfully! I think she is my favorite doctor, because she is so encouraging and so enthusiastic about everything he does. She was able to see his left ear drum, barely, so that is good for checking fluid accumulation and potential ear infections. She did ask if he had been sick, and I was able to say with pride that he hadn't (just wait...) so we have set a return visit to the audiologist in 6 months for another hearing test, "after he gets sick a few times and he gets some fluid on those ears". What?! We aren't going to get sick! Not on my watch! (just wait...) I was very pleased leaving her office this morning.

And then I went to Ladies' Bible Class to get Travis where I had sent him during our appointment. At dinner last night he started saying that his feet hurt, and they looked a bit red, but I couldn't see anything, so I put some cream on and sent him to bed. He woke up in the night saying that his feet hurt and I had to put more cream on them. This morning he said they hurt and I gave him some benadryl because it looked like a rash. I picked him up from class and I had someone else look at his feet, and she said, "Oh, that looks like hand foot and mouth disease." What?! We aren't going to get sick! Not on my watch... So there went all my pride. And it was replaced with fear for Justin. But if he was exposed it's already too late. Now I can only pray that he doesn't get it, because there is nothing I can do beyond keeping them apart. And reading on-line, it says that a person can transmit the virus even after visible symptoms are gone. So, we are back in seclusion, more or less. Travis sucks his thumb, so there is NO WAY I can prevent his saliva from being transmitted to anyone else. It is nearly impossible to stop him from sucking his thumb while he uses the bathroom, much less while he is playing. You know, we missed last Halloween when Travis randomly threw up on our way to the Pumpkin Patch party at our church. And now this? I even had a good costume this year! I will still evaluate, but it looks like we are home bound for a bit longer... And I apologize to anyone else we may have infected, completely unknowingly.

And a deep thought: The doctor's office that we were at this morning is the satellite office for all different specialists, including therapists, so there are no regular pediatricians at this office. It's the place we hope to be able to visit the cardiologist when we are released from TCH so we can avoid the hour drive and $10 in parking. So everyone who is there has some specific issue, with varying degrees of severity. While we were waiting, another little girl with DS came in with both her parents. She was about 18 months to 2 years I would guess. I kept snatching quick glances at her to see what she was doing. We were called back fairly quickly after she arrived. I hope that they weren't put off by my peaks. I am sure they get looks a lot, but my look was for a different reason. I hope that I remember that not all looks are meant to be gawks. I have started thinking recently about the other "firsts" that Justin will experience: the first time a peer teases him for the way he does or can't do something, the first time people gawk at us at the park, the first time he isn't included in a game because no one wants him on their team. I have been pondering this for a while, and I realize that almost every child will have these "firsts", but I think Justin's will continue more frequently. And I think they will bother me more than Justin. I hope they do. But I have been praying that I am prepared for them. That God will give me the words to say, or the blinders to ignore it, or the right actions to protect Justin, and also to let God shine through. Will Justin be hurt? Probably. Will I be hurt? Definitely. But how will we respond? And how will we recover? I hope that is the more crucial piece. I ask God regularly to place in my mind the thoughts that need to be there, for preparation and for planning. I cannot consider Justin's entire life, but I want to focus on the part that is now and just ahead, and let God do the long range planning.

We're Back...

to as much as we can ever expect "normal" to be. We returned to church today. I was SO looking forward to going, even though I know that it's difficult with 2 children. I had to remember all the preparations from the night before that I had forgotten in the 2 1/2 months since we have been. I couldn't believe it when I thought about it! The last time we were at church was Aug. 10. It wasn't exactly as I hoped. I really wanted spend some time soaking up the community worship, singing and praying, but instead I spent the time feeding Justin and trying to get him to sleep by doing laps around the gym. (Walking, not running, but maybe that's a way to kill 2 birds with one stone...) I also spent some much needed girl time with another mom and her baby who also didn't believe it was nap time. When Justin gets tired he talks. Loudly. A lot. But anyway, it was like riding a bike, we didn't forget how, and it felt so good to be back with the "family"! Here is today:

Also to note is Travis is holding his truck and trailer that he earned for staying dry ALL NIGHT LONG (for 10 days). We're very excited about that!

Pumpkin Carving

We went to the pumpkin patch a couple of weeks ago, and we carved the pumpkin tonight. My sister was here for the day too. Travis enjoyed the goo and watching Randy carve it, but he did not want to touch it at all! He is quite the clean and neat freak. It MIGHT have something to do with me... This week he spilled water on his shirt (about 3 tablespoons full!) during lunch and he would not eat until I brought him a clean shirt. Justin didn't care much for the pumpkin. He just sucked his thumb.

We are headed out for pictures later this next week, and I can already tell it will be a repeat of Travis' 6 month pictures. The ONLY picture we could get without his thumb in his mouth was when I pulled it out and the photographer snapped the picture, so his arm is straight out in front of him. It looks a bit odd. It's much easier now that we can tell Travis to take his thumb out, although it's not always effective. Today he was laying on the floor sucking his thumb and trying to reach one of his trucks with the same hand, without taking his thumb out. It looked very odd!

Freedom

Yes, we're out. Since Tuesday we have been free, and we celebrated by going to Ladies' Bible Class at church. We only stayed for part of the class because Justin had his therapy appointment, but it was a good introduction to the outside world. Travis did not want to leave; he was having so much fun. I am so glad that he enjoys his class, and playing with his friends. So that was our first venture out. It took another 2 days for me to go out again because we had car trouble this week. Randy's car was misbehaving and he needed the other car, so no outings for us. Then Thursday I did I, I went....to Target. Yes, that was my first real venture into the germy world, and so far, we're all good. It was actually kind of funny because I hadn't been shopping with both boys in so long I forgot how. Where do I put 2 boys in a cart? I had never done this before, Justin was always small enough to ride in the sling, and I forgot it because, well, we hadn't needed it in about 2 months. So where do I put him? He is one who likes to fling himself forward at random times. And who is nowhere close to sitting up on his own. They both ended up in the seat of the cart, with the shopping cart cover over every inch of the seat. Both of the boys are HUGE thumb suckers, so everything they touch ends up in their mouths. Justin fell over on Travis a few times, and Travis screamed that Justin was crowding him, but I still think it was okay. We will learn. I am going to Wal-mart tomorrow. I am kind of excited. Really.

Justin moved on to peas tonight. I am going to the grocery store tomorrow to buy some produce to prepare for him, like I did for Travis. Like a friend mentioned, it's the perfect time of year for making baby food, because so much of the good stuff is in season: sweet potatoes, winter sqaush, apples, and pears. Justin liked the peas so much he grabbed the spoon and sucked it clean, along with his thumb.

And last week, Travis started asking to read the paper along with Daddy when he eats breakfast. So I HAD to take a picture. Eating cereal and reading the paper. Daddy has Sports and Travis has the Business section. Do you think he's watching the market to make sure we don't lose his college fund?