Friday, October 31, 2008
Thursday, October 30, 2008
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.
Tuesday, October 28, 2008
- 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?
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.
Sunday, October 26, 2008
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!
Saturday, October 25, 2008
Friday, October 24, 2008
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?
Tuesday, October 21, 2008
One of the issues with Justin is that I cannot just wait for him to learn things, or assume he will catch on, I have to be proactive and teach him the right way to do things, so he is using the correct muscles. This affects the way we teach him to eat. When I spoon food into his mouth, I am tempted to scrape the food off on his upper gums, just to get it in his mouth. Instead, I am supposed to encourage him to close his mouth around it and exercise the lip muscles to pull the food off. I am just trying to keep his hands out of his mouth right now! I am grateful for the HUGE bibs that cover everything that my cousin sent me. He needs as much coverage as possible. I washed 2 of my shirts, a bib, Justin's outfit, and his crib sheet today from all the messes. Ok, one of my shirts was my fault, but the rest was Justin!
Friday, October 17, 2008
The beef usually goes in one pound bags each. It's easier to thaw and we can make it flat and easy to store in the freezer. The chicken we divide up by however many breasts people request. And the pork was new for us, so we did some in larger chunks to bake, and some sliced to grill. I have a spread sheet to keep track of orders. Today it took us 5 hours to divide up all the meat. Then everyone comes to my house in the afternoon to get their meat. I have some amazing helpers, and today Randy was able to help because it was his Friday off.
I have learned a lot in this whole process: I know that my big freezer can hold 175 pounds of ground beef on 2 shelves. Without breaking. Yet. I know that a case of chicken has about 92 breasts, and each one weighs about a half pound (they're BIG!) I can grab a handful of ground beef and it is a pound almost every time. I LOVE doing this because 1. It saves money and I love to save money, and 2. It is a challenge to make the orders all work out within the confines of the case limits. The day after Meat Day I spend cooking my meat and freezing meals for easy dinnertime planning. I love Meat Day and I look forward to it every time. Someone said today when she picked up her meat that it's a good thing we do this, or her family would be vegetarians. Maybe it's not that serious, but it's still fun and everyone benefits!
Wednesday, October 15, 2008
Sunday, October 12, 2008
So, now that I have vented a bit about lacking internet (I DO realize that some people live like this every day…) what is happening with us you may wonder. We have been doing well. We are now beginning our last week of solitude, and I have begun to think about life after isolation. One consequence of this time has been my increased fear of enclosed spaces and crowds. I have never been a real germ-o-phob, but I am now scared of exposing my children to anything. I am nervous about letting Travis play with other children who have not been pre-screened for illness. And I do not want anyone to touch Justin’s hands for fear of contamination. So silly, I know! I really have been praying about God taking this fear away, and also for recognizing once again, that God is on control, that he loves my kids even more than I do, and that he can take care of them even better than I can. Seems obvious, doesn’t it?
The other consequence has been getting to know my children even better. I don’t know if anyone else felt this way, but when my kids were born I loved them, but I didn’t KNOW them. I could look at the pictures and say, “This is my new son, Travis.” But the meaning stopped there. Now I can look back at those pictures and say, “This is TRAVIS” and it carries so much more meaning. I am not sure how to describe it, but I smile knowingly when I look at pictures of my kids. I know Travis’ smile, I recognize his feet barefoot, and I can pick out the picture he has drawn. And it all has depth of meaning that just cannot be there at birth. Now I can say all those things about Justin. We have had some great conversations while Travis is sleeping. Justin has Brushfield spots in his eyes, and I now know their pattern. He loves honking my nose, and he has his special way that I hold him that helps him sleep. And I have not had anyone else with whom I can compare him. There are no other 6 month old babies in my home who are able to crawl, who have teeth, and who stand up. There will be times when I won’t be able to avoid this, but I have gotten to appreciate and love Justin for who is, not for who he is not.
I have started working on Justin’s baby book, which had put off doing for a long time, partly because it is a daunting task for me, but also because I didn’t know how to write it. Why do parents create baby books? I had always planned to give Travis’ to him when he gets older, but what about Justin? Will he understand what it is? I want him to know that he is loved just the same as Travis, so I am working diligently to create something that Justin will be able to look at and enjoy, probably for different reasons than Travis, but still equally special.
We took a family outing to the Pumpkin Patch today. It’s weird going places other than church on Sunday, but soon we will be back to “normal”. Travis enjoyed the goats and climbing on the pumpkins, and he watched the hayrides without wanting to ride himself, although I expect this will be the last year for that. And Justin slept, so we didn’t get any pictures with the boys in the pumpkins. Here is what we did get:
And some other tidbits from this week: Travis got his potty prize (a dump truck) for successful poopies in the potty. The next prize is for staying dry all night long. We have 1 sticker on that chart so far. And he wanted Justin to watch him play with his truck so I had to set him on the floor to watch, which he did for a long time. Travis is LOVING all the trucks that are picking up the debris from the storm. He calls them “grab-nabbers” (think Little Einsteins) and we have to look for them whenever we are out. He uses his crane as a grab-nabber and picks up “logs” (blocks) and puts them in his new dump truck. They were working in our neighborhood yesterday and we took several walks to find them. Apparently they are from Florida and they are used in the orange groves. Who knew?
And my sister’s boyfriend came to town. Travis thinks it was to visit him. When he woke up from nap the first thing he asked was, “Where’s Jerry?” And we sing a song that changes the first letter of each word to be the same, and he asks for Jerry’s letter (J) all the time, even though his brother’s name starts with the same letter! Jerry is the preferred playmate for the time being at least.
That’s all I can muster up now, so please pray that internet returns to the DeCarlo home soon and for our last week of introspection (may it not get TOO deep!)
Wednesday, October 8, 2008
And we resumed therapy yesterday as well. Lucy was impressed with Justin, and she was able to do some work with Justin that doesn't require laying on his stomach. He is moving up to supported sitting, which he can actually almost do. He needs some help with his elbows, but he can do it for a second or two. And Justin is back almost to rolling to his stomach.
Last week when I went in to see Justin during the night, he was playing with his toes for the first time. I know that is silly, but it is so big for 2 reasons: 1. I read in a magazine about the "other" milestones (not crawling or walking) and one that was mentioned was playing with toes, and the time they gave was 5-6 months. Since I give Justin time off from learning for surgery, he is just where he should be with that milestone! 2. This requires a story: When Travis was a few months old, I was in the baby care room at church and another mother brought her baby, who was a few months older than Travis, into the room. She asked me to watch her while she went to the bathroom. She laid on the floor and played with her toes. I though, "Travis is NEVER going to be able to do that!" So silly of course! Travis did learn to find his toes, and a few other things! So that turned toe touches into a milestone for me, and now Justin is there! Who would have thought?!
Justin also has started playing in his exersaucer. We have to wrap a blanket around him to give him some support, and we put a pillow underneath his feet, since they don't actually touch completely. But, he plays, and he likes the toys. That is wonderful, since he is still very attached to me from being held so much during surgery. Here is a picture:
(Oh, and we haven't fixed the door yet...)
And I tried to take the boys' picture on Justin's 6 month birthday, but 15 pictures later, there is not one of Justin looking up. His thumb is way too good. It must be his tasty thumb, as Travis calls it. Travis won't let us cut his finger nails, because it will alter the taste of his "tasty" thumb! This is the best I could get:
Justin will put any finger that get close to his mouth, right IN the mouth, so I have to be careful if my fingers aren't clean. He will hold your finger and suck his, or whatever. He does prefer his right thumb (and Travis his left) so we'll see what that means in the future...
Travis is rocking with the potty training. He woke up DRY this morning! The only problem we have is that he likes to SEE what he does. This is a problem because when a little boy with a litte pee-pee looks DOWN, the pee-pee pops UP, and it most often mid-stream that Travis feels the need to look. So anything, or anyone (ME!) in front of the potty gets hit. I just finished changing my cute capris for sweatpants after I got tagged. We're working on it...
Saturday, October 4, 2008
Justin's appointment went very well. The doctor removed him from the lasix and we are down to only enalapril (bp med.) Yeah! He is back up to 11 pounds after losing more than a pound in the hospital. His bp was great and she said that she could only hear a minor regurgitation ("murmur"). It could be because of the meds. so that could change, but we are encouraged for now. The more minor or undetectable the murmur, the better the fix and the less likely additional surgery would be. Justin is having some sleep problems, which the doctor does attribute to the surgery. She said that some adult patients report some problems like depression, sleep problems, etc. so we will give it some time before we look into other possibilities. There is a small shift in his sternum, but again, not unexpected. His chest is wired together and it is difficult to realign it exactly. She said that she has seen much more dramatic shifts. She did say that we have to keep Justin clear of sickness for another 2 1/2 weeks because we are entering cold and flu season. That will bring us up to the 6 weeks post-surgery about which we were warned in the beginning. We have been cleared for another 6 weeks to return to the cardiologist, and then we will determine if another echo is required. Now we are looking forward to our return to genetics (10/30) the DS clinic (11/3) an catching up with our pediatrician (he is WAY behind in well-baby check-ups because of the delay with surgery). The brief reprieve in doctor visits has ended!
Other than that, we are good. Our freezer returned home last night so that makes the last thing to get our home back to normal. I apologize to those who were looking forward to pictures of the freezer move, but it was after dark and I (the photographer) was on child/baby duty. But the operation was flawless and the freezer is none the worse for wear after its displacement. Now I can assess the loss and plan for another MEAT DAY! (Coming soon!!!)