Dateline

On Friday we watched Dateline on TV and they had a story about Serbia and the care and treatment of children and adults with disabilities. People in Serbia are encouraged to give their children up to the state if they are born with disabilities. The only aid the state offers is a place in an institution where they care for the children. The doctors tell you that you will be shunned by your family, and the costs of caring for the child will bankrupt you, and that the institutions are a place where the children will be with other people like themselves. People with disabilities are shunned in society, even by other family members. They told the story of 2 people, one who did give up their child, and one who didn't. The woman who didn't give up her son with CP was divorced by her husband, abandoned by her family, and is only able to work during the 2 hours a day that her son goes to a special school. They live in a 1 bedroom apartment and she spends all day being the sole caretaker of her son. The man who chose to give away his son with DS never even looked at him, but has spent the last 8 years thinking about him. Dateline found his son in an institution where he spends about 20 hours a day in a crib and the only time he is out he sits at a table and plays with the same lego blocks. He never smiles or laughs, and he needs help walking. He is small for his age, but I don't know how much of that is the DS, and how much is from the lack of movement.

The conditions in the places are awful. Truly awful. Grown adults half dressed sitting on the floor in the hallway. Adults confined to cribs and their limbs contorted to fit in the space they are allotted. Children tied to the rails of the cribs for 4-6 hours, every day. One doctor in charge of a facility that houses 600 disabled people. A child banging on his ear until it bleeds. A community shower where people are lined up and hosed off. Walls peeling and cracking. Cemeteries on the side of the hill with simple wooden crosses marking graves where no service has been performed because there is no money to pay a preacher. Ann Curry touched one of the boys and she told the nurses she could tell that he knew he was being touched and she said that he cries after any of the infrequent visits his mother makes. How could she come and leave him there? The doctor was asked why he let Dateline in to see the condition. "Because no human should live like this." And that is where people are encouraged to send their children. Their poor helpless children. Because that is the best option they have. They don't know what they are doing, but they feel like they have no choice. How many of us do things because the doctor says to do it, that it is the best thing? No one knows what happens there. You know they don't get good therapists or good workers. Who would want to work in conditions like that? The government official who was interviewed said that it was a problem they have inherited from the previous government, and that it will take time and money- lots of both- to make it any better. But it's deeper than that, it takes changing people's perceptions and attitudes. If the people of Serbia shun people with disabilities that strongly, how can there be any change?

That could have been our son. I never thought I would be thankful in that way. I am thankful yet again for the way Justin was born, and now I am thankful for where he was born. I am thankful that I have the burden, whatever that means, of caring for my son. I am grateful for the pain and the tears and the joy and the hope. I could barely stand to watch the show, and yet I couldn't turn it off. Tears were streaming down my cheeks, and they are again as I write this. I am praying that there is a reason I saw that, and if I am supposed to be one of the ones who needs to help affect change, then I want that to be ready and willing. Like the doctor said, no human should live like that.

Back to Work

So we made it! I made it through work, and Justin ate some, and both my mom and Randy are still speaking to me. A true success I would say! With everyone posting pictures of kids starting and returning to school, I almost feel like I should have a picture of me all ready to go to work, but don't worry, I will spare you! I know it's all about the kids!

It was a joint effort I understand. It took both mom and Randy to get a little bit into Justin. They used the trick we used with Travis of bouncing on the yoga ball while holding the bottle to feed him. So Randy held Justin and bounced on the ball and patted his bottom while my mom held the bottle and tried to get him to eat. He did eat some, but mostly he got some milk and let it run out the sides of his mouth. But he wasn't overly fussy and he wasn't overly crabby, so I think it will work. I don't plan on leaving any more than necessary, but now I don't have to spend the whole day worrying about him. And just to make sure I felt at home, we had a baby on the airplane who cried most of the way home from Tegucigalpa. I also flew with a great crew who helped me work out the kinks and helped get me back into the grove. So now I am done for the month and I can be here for Justin. God is so good and I know that he watches over our family the same when we are apart and when we are together.

Hats

Randy had lunch with a former co-worker yesterday and she gave him a present for Justin. She has been making him some hats to wear in the hospital so his head won't be cold! How great is that! And they are so soft, which is my favorite part:

I know his eyes are closed, but it is too cute to pass up! And it has the best little pom-pom.

And this one she made long enough to cover his little ears. I think he was cold in the hospital the first time so I was planning to bring some socks. Now I can bring his hats too!

Training

So I was able to go to training for work on Tuesday. It ended up being a bit of a production: Travis went to stay with Me-Me and Pop and Randy stayed home with Justin. Randy stayed home because we had a man coming for an estimate on the door, and plus it would have been too mean for anyone to try to handle both boys, given that one would most likely refuse to eat and cry instead. And Justin also has been boycotting naps, which combined with not eating makes for a crabby baby.

The plan was that if Justin refused to eat at 10 am (I fed him before I left at 7 am), Randy would bring him up to the training center during my lunch break for me to feed him. And then we only had to make it though the afternoon. I was scheduled to finish training at 6 pm and we often get out a bit early, but I didn't want to promise Randy too much. I have gone to this training every year and we have never gotten out more than about 45 mins. early. This time we were done 2 1/2 hours early! Just in time for Justin!

The moral of the story is we all survived: I passed my training so I can work for another year, while Justin didn't eat as well as we had hoped, he didn't scream all day, so that means Randy agreed to try it again, and of course Travis had a great day with Me-Me and Pop (he won gold medals you see!)

The big test is Saturday: I have to go to real work, where I am unavailable all day long, so there can be no trips to see Mommy at lunchtime. And I will not be home 2 1/2 hours early. I may even be late, given the hurricane forming in the Gulf. Please pray for good weather!

Goings On

So we are working on a few things here at the DeCarlo home, and we have had some successes that I wanted to share.

First I have been working on getting Travis to eat a greater variety of food. Really, he does FANTASTIC. I cannot complain, (he eats spaghetti squash for goodness sake!) but the are some things I want him to try. Last week I splurged and bought t-bone steak. I cut some small pieces for Travis to try and he put the first piece in his mouth and he started to chew. And chew. And then sing. And chew some more. And look out the window. And chew. FOR TWELVE MINUTES! It took him 12 minutes to eat a piece of steak the size of my pinkie nail! At first I said he had to eat all the steak, but by the end I just wanted him to SWALLOW!

So tonight I offered him salad. He has said in the past that it is too yucky, but I know that children need to be introduced to things several times. So salad: I covered it with ranch dressing and I told him he had to try one bite before he could get down. He cried and said it was too yucky, but I got one bite down. And then he ate another. And while we were eating our dinner, he ate the rest of the salad, and even said that it was tasty- without prompting! Wow! Tomorrow could be another story, but yeah for today!

The other thing we are attempting is potty training. I figure if we are stuck at home, let's try at least. He sits on the potty and pushes until is face turns red and then says, "Not working." So I noticed that he always goes pee-pee in the bathtub so I put his potty in the bathtub so his feet are in the water and that makes him go. The past few nights we have been having successful potties with more each time, and more quickly too. The first time he did a few dribbles, got his sucker, and then peed in the bath water afterwards. Tonight I told him that he had better get it all out because Justin was going in the bath and I didn't want his pee in with Justin. And he likes it when Justin takes a bath with him so that is an incentive. He did GREAT! We had several dribbles (and Randy is teaching me all about how to know if he's done or not) but overall, very good. And he even got out of the bath and asked to sit on the potty and he did more. I know it's a process, but I am encouraged, and that is enough to keep me going. Now we have to work on the morning. He pees between his bed and the door, so I have to camp outside his room to get him before he opens the door. Not looking forward to that...

The DeCarlo Olympics

So since we have been watching the Olympics, Travis has developed and interest in gold medals. So Pop decided to help him make some medals of his own. This is not the first time they have worked on crafts together. The first project was a tunnel for the electric train. They painted it together. Mabe it would be more accurate to say that Travis painted himself AND the tunnel. It is a very interesting looking tunnel, but Travis is VERY proud of it and he talks about it all the time. The first round of medals included one for Travis teeth brushing and one eating all his dinner. Justin's medal was just for being number one. Today, Travis got one for being a great big brother and for running laps on the deck outside Me-Me and Pop's. And this time Justin's medal was for tummy flips and bravery and heart fixing.


Not sure why they didn't win for thumb sucking:

And last week we had a friend stay with the boys while I ran an errand and she let Travis take pictures with her camera. So now he wants to take pictures all the time. We may need to work on that:

And this one is just too cute not to share:

Back to Normal

Whatever that is, we are back to it. The bags are unpacked and scheduled rearranged and Randy is back to work Monday. Sleep hasn't been recaptured, but who can expect that given the age of our children?!

Justin is doing amazingly well. He is up to 11 pounds and he is kicking his legs like crazy! He has started trying to support himself on his legs and the jumper is really helping with that. Travis likes to play with him in the jumper too.

He is doing very playing by himself and he is ALMOST rolling from back to front. He rolls halfway to his side and then he finds his thumb and that is enough. He has no incentive to go the rest of the way! But we are trying and maybe this extra time will get the roll accomplished.

Justin is also becoming a musician. We have the little animal keyboard, and he actually reaches out to touch the keys and make sounds. It is very cool! Little things amuse us at our home!

He is also talking up a storm, especially when we are watching TV or talking on the phone. I think he wants to be included. Soon, little man, soon!

Rescheduled

The new date is September 8.

Actually, that isn't a bad date for us. I got a great schedule for next month that will give me the chance to do one trip (for insurance reasons) and do my training, and then I will be able to be off the rest of the month. The only thing is that we will be in the hospital for our 10th anniversary (September 12). Let me tell you, the accommodations do not lend themselves to romantic encounters...

Bumped... Again

We were supposed to go to the holding room at 6:30 this morning, but they were running late and didn't come until 7:10. When we got there we found out that there was a confusion about when he was supposed to stop eating and we had to wait until 9 am to go into surgery. During the wait another child developed come complications. In the end that child needed emergency surgery and we had to get bumped, again. We are still waiting to find out when we are rescheduled. It could be tomorrow, but there are 3 surgeries scheduled, and 2 have already been bumped twice. They are checking on the third one. Otherwise we will go even later, but we don't know when.

We believe it was God's providence that led to the confusion about when he could eat. The surgeon said that it would have been bad for the other child if we had been in surgery and he wouldn't have had the OR available for him. It's hard for us to wait when we were so prepared, but we are leaving it up to God and know that he is the great Physician. His plan is perfect and we trust Him.

Ready to Go

We arrived at the hospital this morning at 8 am. We went through all the usual tests (EKG, chest x-ray, blood draw, urine sample, blood pressures in all 4 limbs) and then a tour of our new home for the next few days. Everyone has been so helpful and friendly and we even were able to camp out in our own little lounge area between tests. And Justin has managed to get a few quick cat naps. This is a very cool hospital with lots of activities for the children. And if you ever wondered where all the purple, turquoise, and orange paint was used, I have found it!

Now we are in our room for the night and they will be in at 6:30 am to get us for surgery at 7 am. Randy and I will spend the night here with Justin. Justin is taking everything like a champ. He hasn't fussed much at all. I think it is good that he is so young so he won't remember much. And as I have heard, chicks dig scars.

Yesterday was a time for "lasts" before surgery: the last time to see Travis (I waved good-bye to him about 15 times), the last time to give Justin a bath, the last time to put Justin to sleep at home... I feel a bit like we left on vacation, but I definitely won't be needing my swimming suit here!

We did manage to figure out how to post pictures, so we will do that tomorrow when there is something to see.

Let Go and Let...Others

Now I understand a little bit why I couldn't publish this post yet. More things had to happen and my thoughts had to deepen a bit more.


I have always had an independent, do-it-ALL-myself attitude about everything. One of the hardest phone calls I had to make was the first time I had to ask for help with Travis when we had to go to the doctor with Justin. I know that people want to help but there is something about appearing able to do it alone. There is no keeping up appearances now. I have to let go, and let others help me. Help our family. From the prayer dinner we had last month, to entertaining Travis, to bringing food, and running errands, it's amazing. I am not sure how anyone can do it without a church family.

I have made a list of every one's name who has offered to help with anything for us and whenever I need something I take a minute to ask God to reveal the person's name who I am supposed to call and ask for help and then I look at the list. I read up and down the list and a name always comes to mind. Sometimes it is a name not even on the list. God's choice has ALWAYS been the perfect choice. One name led to help with house cleaning, one name led to dinner when we got back too late for me to cook, but even more than that, I have had perfect peace about Travis' care while I have been away. I think that is the most important lesson I have learned.

And I have learned the true meaning of the word "burgeoning". That would describe my freezer. When we redid our kitchen a couple of years ago I asked for a large freezer and I have done a good job of keeping it full. But this is beyond that! I have been preparing meals for us to eat while at the hospital and I usually don't have any problem deciding what to prepare, but I have been stuck on this one. I let it go and let it go, and just didn't know what to make to freeze. But over the last weeks and especially today, people have been bringing us food that they have cooked and portioned out in single serve containers. And now my freezer is burgeoning!

And I went to the grocery store yesterday, since Randy was home and he could stay home with Justin. I was planning on getting some snack stuff for the hospital, but all I managed to get was some of those individual drink mix packets. I had Travis with me and he was a bit antsy. So today we had a visit from a friend who brought not only food, but also all the snack food I could possibly imagine! AND what else did she bring.... water bottles! To go with my drink mixes! God fixed it so our purchases go together perfectly. He is awesome!

I had to call someone today to watch the boys while I went to give blood for Justin's surgery. We have a bible study teacher who asks us from time to time where we have seen God recently. While I was talking with my friend, she said that she sees God is me. Wow! I was awed by that! At first I was thinking, "How could that be? I am so weak sometimes I don't know how I survive!" But he uses the weak to show his strength, and he has a lot of weakness to use in me! So that makes sense, and I am thrilled to be his instrument.

I have actually been anxious for these days to come, just so that it could pass and we could move on. But now, I am getting nervous and wish the days would slow down. I want to spend as much time as I can with Justin and Travis. So the house has looked a bit like a disaster area and there is much more playing than cleaning up going on around here. I have put off packing until tonight, mostly because it seems a bit overwhelming to me. I feel like we are going to be living out of our car's trunk for the next week and a half! But we are going to have the BEST food ever because we have the best church family ever! We are having a "Be the Church" day this Sunday and our members will be out doing things to be the church for our community and in other ways. I know that God has placed us in this church at this time to be with these people. I am so blessed to be a member of our church and I love them all with the love of the Lord.

Getting Ready for Surgery

This is the first time I feel like I have to apologize for not posting for so long, but I have been doing a ton to prepare for surgery. I have 2 posts that I have started and not finished because I feel like my thoughts are not complete yet. But mostly I have been working on the computer every night trying to put down everything I can think of about Travis and his schedule and our house for anyone who might need to take care of him. It's a whole lot more than I thought it would be. It's difficult to think about all of his idiosyncrasies and quirks, plus all of the things that anyone would need to know about our home. Like how to work all of the remote controls for the TV, where the cat food is, and what days are trash days. Crazy, isn't it? I know Travis will be okay, but I will miss him so much. I hope I can see him every other day at least, but I know that hospital will not be a fun place for him.

I will get my work schedule for September on the day of the surgery. I am a little worried about what I will get because next month is the first month of the cutbacks that were announced a couple of months ago. Everything will be a little different and I don't have the option of red eye flights anymore. I am praying for turns that will have me back early in the day. I am hoping not to have to fly much at least for the first few months. Thanks for praying for us. We really do feel the comfort and peace that the prayers bring.

Highs

The past few weeks have been so outstanding for our family. It is the longest stretch since Justin was born without going to a doctor's appointment! By next week it will have been five whole weeks without a trip to any doctors. I have enjoyed it!

But now we are back in surgery mode. In my mind it has been a long ways off, but now that we are a little over a week and it is getting more real it is a bit scary. I went back to the Down Syndrome Association Mom's coffee today and talked with more moms. Most of them have gone through surgery or may have surgery in the coming months or years. It is much easier talking to them about surgery than doctors. They know the pain of giving their child away and trusting the doctor. It was fun having them fawn over Justin and be impressed with the things he can do because they appreciate it and recognize how amazing it is for him to do the little things. It makes me feel good too because they know how hard it is to work with him and that it takes effort on my part. It was a good morning. A little encouragement goes a LONG way!

I am again reminded of how truly blessed we are that Justin was born at the birth center without any real complications. I haven't spoken to a mother yet of a Down's child who has been able to take their baby home right away. All of them have spent some time in the NICU and some even were transferred to other hospitals for further evaluation and treatment. God is SO good!

Justin has still not taken a bottle. Lucy, his therapist, has been working with him and he just gets mad at her. As soon as she gets him in position to eat he starts crying. We have gotten some new bottles and nipples so we are going to try again. I am really not stressed about this even though I am going back to work (in September) and I won't be here to feed him for long stretches of time. I feel like God is telling me that he doesn't need to eat from a bottle yet. I am still here. When it's time, God will take care of it. That's one less thing for me to worry about now.

Child Reminders

Travis and I were watching PBS as usual in the morning and I was tickling him and he said, "No mama, just love me!" That's all he wanted...love him. How perfect.

And then we were out driving and another car cut me off and I was a bit upset and Travis said "Sing Hosanna!" (His way of asking for the song "Give me Oil in my Lamp".) I had to smile. That's right, sing hosanna all the time, no matter what.

Children are so smart, especially when they aren't trying.

Deck Demo- Day 5

Well, now it's really more of putting back together than demo, but you know what I mean.

Here's the backyard after the last two pallates of sod:

It's done!

Now it's just water, water, water! And then I have to decide what to plant in my new flower bed. Any ideas?

And Justin has rolled over twice more! So maybe it's for real! I have been working on reading too:

He's my boy, so reading is in his blood!

Justin Rolled Over!

Ok, so it's not that big of a deal for most children, but it's HUGE for us! Justin was napping today on his stomach, which we have him do to strengthen his neck and back muscles, and when Randy went in to pick him up he was smiling up at him, ON HIS BACK! WOW! I have been working with him to get him accustomed to the rolling over motion, and he has gone from being shocked, to being more comfortable with the movement, to doing it himself apparently!

Please add this to your prayers: Our insurance is in negotiations with our pediatricians group (Texas Children's Pediatric Associates) and as of now they haven't reached an agreement so on March 1, 2009 they will no longer accept our insurance. That would be a huge blow to us for a couple of reasons. First, we really like our pediatrician and we don't want to switch. Second, the pediatrics group gives us a bit of an "in" at Texas Children's Hospital (which would still be in network). Our pediatrician has helped us make the appointments we have needed at Genetics and the Down Syndrome Clinic. Because they are part of the same group, we can get referrals to the specialists we need with relative ease. That is so important to us. We don't know yet if things can be worked out, but please pray that they do.

Justin

One year ago yesterday (sorry, this is a day late!) I found out I was pregnant with Justin. We had Travis' 18 month pictures taken that day so I have the picture with the pregnancy test, like everyone has, plus a family portrait too. I have a friend who suffered a miscarriage and then had a family picture taken shortly after that and whenever she looks at the pictures, she remembers those feelings. I look at that picture and I think about how innocent we were. I was so excited to be pregnant! It was like my little secret: Justin was there, even though he wasn't really in the picture. Now I am overwhelmed by so many different feelings when I look at that picture. The feelings that I have in that picture are the ones that seem so elusive and that I hope to recapture one day soon.

Justin is doing well overall. He is up to 10 pounds 11 ounces, which I consider an accomplishment. He is holding his head up most of the time. He doesn't hold himself on his feet, as a typical child should do at his age, but he is starting to push off if we hold him upright. We put him in the door jumper and he did well with that, although he also held his feet in the air and spun himself in circles. We have propped him in the corner of the couch with the boppy pillow and put toys on it for him to play. I think he is reaching for things, but maybe it's just me thinking that. We put him on the floor under the play gym and he seems to reach for the toys that are hanging off of it. I gave the boys a bath together this week too. I was trying to save time, but they really seemed to enjoy it! Travis poured water on Justin's stomach (where the Indian shot him- his belly button!) and Justin watched him very intently. I don't have any concerns about Justin's vision right now. I think he sees everything!

We are having problems giving him a bottle. We have tried several things and each one works for a little while, but then Justin gives up and just screams. He didn't eat very well even from me this weekend, and we are concerned that he may be experiencing some of the heart-related problems they warned us about. We don't want Justin to turn into one of the sick babies who had to have surgery before Justin! Please pray that we can work through these problems and that we can make it these last 2 1/2 weeks without incident. Today did go much better, so we hope that this continues.

Irreparable

That's the word: Irreparable. So we are door shopping today. Wish us luck...

Deck Demo- Days 2, 3 and 4

So I am a bit behind with the posts. There have been some "incidents" on the job site. Here is the rest of the Deck Demo project:

On Day 2 Randy joined the festivities, it being his every other Friday off. Travis used his little potty for the first time! That was exciting, but it was only once so we still have a long way to go.

Highlights of Day 2:

Loading all the wood from the deck into the dumpster. We also fit all the hot tub parts inside too.

Our dirt arrived!

Travis peed all over the bed when he was napping so I had to run out to the laundromat and wash the comforter. (You don't need to see a picture of that!) You recall he used the potty in the morning...



Here is the view at the end of the day:






It looked so great! All that was left was the stump and then dirt and sod. Easy, right?

Deck Demo- Day 3

Day 3 brought excitement and promise: New energy! My sister joined in, plus a few friends from church. The sod arrived and the guys did a fantastic job of clearing out the last of the greenery and they started working on the stump. Randy admitted that he needed the stump grinder so I made a trip to the rental place and picked one up. Randy and a friend worked most of the rest of the day on the stump. That left the rest of us to haul dirt and lay sod. My sister is not used to working outside very much and it didn't take long for her to start melting. I have to sing the praises of the friend who started this whole project because he is a trooper! He worked 3 days straight, from about 9-5 every day, in the HOT sun and didn't complain once. He's the one we are trying to convince to move here, and he still didn't knock our weather even once. I was VERY impressed! He only brought one set of work clothes for the entire time he was here, so I did laundry every night. He was pretty stinky, so it was good for everyone.

So stump grinding. Have you ever tried it? Not very fun. The tree has been dead for about 5 years, but apparently no one told the tree. It was still very green and did not grind easily. So Randy took a swing at it with the ax (no, he didn't hurt himself...) but he did manage to knock off a chunk and it flew into one of the french doors on the back of the house. Oh yeah, and it broke, into a million pieces. It actually took about 30 minutes for the entire window to fall out, but fall out it did. It gave us time to cover the window and put plywood up to contain the glass. And that leaves me with another project for Monday. We aren't certain that the glass can be replaced, so we might have to get a whole new set of doors. Did I mention there's a hurricane coming this week? Here's the picture:

And here's the progress at the end of Day 3:

Deck Demo- Day 4

We sent Travis to church and called my mom to watch Justin and we both attacked the project with vengeance. We had to move the dirt so the dumpster can be removed and we had to lay the sod so it doesn't die.

I mowed the lawn:

Randy ground the stump:

I made a flower bed:

Randy ground the stump:

I fed Justin (You don't have to see pictures of that!)

Randy ground the stump:

All in all, we moved 20 wheelbarrows of saw dust out from the tree stump!

We got a call from someone at church who said he would help us for a bit in the afternoon. He was truly sent by God, because there was NO WAY we could have finished ourselves. I returned the stump grinder and they were hard at work by the time I got back. The guys finished laying the sod and moving the dirt right before the sky opened up and the rain came. We didn't quite finish everything because we ran out of time, energy, and sod! But, we are well on our way! All in all I would call the weekend project a success. Randy stepped on a nail, and we are still waiting for the doctor to call to see if he has gotten a tetanus shot recently. But really, other than that, we are well and healthy, if not a bit sore. (Some more than others!) We are so incredibly thankful for all the help we received. We thoroughly admit we could not have done it without you!

And here's the final product:

(And here's the window after being secured for the night!)