Family

Justin met his cousin Lauren today. She is Randy's brother's daughter, and she is about 6 weeks older than Justin. We celebrated Randy's mother's birthday and the whole family got together. It was a lot of fun. I really enjoyed meeting Lauren and playing with her a little bit. It was a short trip for them, so we hope we can spend some more time sometime soon. Lauren and Justin looked at each other, and Lauren really wanted to touch him and see what he was all about.

We got a picture of all the cousins for Me-Me and Pop. Me-Me has been DYING to get some pictures in her "grandchildren" picture frame. It was quite the photo session, with several cameras shooting from various angles. I am sure it will be an event that is repeated many times over the coming years!

Mountain

When Justin was diagnosed we had so many questions so we decided to write them in a notebook so we wouldn't forget them. Then we would have the answers if we couldn't remember what the doctor had said. We thought we were being smart to keep it together. But then every place started giving us folders with information in it and we didn't want it to fall out of the notebook, so we started a binder. I even divided up into sections to keep similar stuff together. I thought I was being smart to keep it together. But then we had all of the explanation of benefits (EOBs) sheets from the insurance company that we had to reference from time to time as we are fighting insurance on various things. And all of the receipts from the different doctors. So I started a file folder with all those papers in. I thought I was being smart to keep it together. Now the notebook, the binder, and the file folder are FULL and we are only 3 months in and the heart surgery hasn't even taken place yet! My desk is overflowing with paperwork and it just keep coming. "Fill this out and keep a copy for your records," they all say. Where am I supposed to put a copy?! We are going to have to add on rooms for all the moutains of paperwork! So, we agree that the perfect gift for someone receiving a diagnosis of Down syndrome is a file cabinet!

The Week in Review

OK, so really just the past couple of days, but you get the picture...


Wednesday we visited the cardiologist. I went by myself with the 2 boys, and I got a picture of what it will be like on the day of the surgery. They did a few tests on Justin and one thing they did was a chest x-ray. Since I had Travis and he couldn't go in the room during the x-ray, I had to let them take Justin and do it without me. I had to stand in the hall and hear him cry. That was very hard, and I know it will be ten times worse the day of the surgery. The doctor said that more fluid had accumulated on his lungs, but not enough to warrant giving him the diuretic medicine. She said that she is going to e-mail the surgeon to say that if a surgery date become available earlier that she wouldn't mind if he went ahead and gave us the time. All in all it was a good appointment. We have to go back July 14 for another echo and appointment with her. Then it's on to the date of the surgery. If we do go in for the surgery early, she said that it's okay if we don't get the echo because they always do one before the surgery in the operating room.



Then on Thursday we went to a meeting where a lawyer discussed estate planning for the disabled. Mostly it was about special needs trusts (SNTs) and guardianships. I am OVERWHELMED to say the least and I left the meeting feeling to totally helpless again. In essence I am relying on Social Security and the government to care for my child when I am gone.

The lawyer told a story about her daughter, who has DS which is how she got into the business of SNTs. She said that she was going out to school one day and she wanted to take her jacket when it was over 100 degrees and she couldn't understand why she needed the jacket. Her daughter kept saying what her mother thought was "tortilla" and she kept asking and trying to figure what was going on and she finally got that it was cold in the "cafeteria". She said that she shuddered thinking about how someone else wouldn't take the time to figure out what she was trying to say and that she would have been cold every day in the cafeteria.

I don't understand how God could send me a child who needs so much care and then make it so I cannot provide the care. No, that's not right. I know that I am God's instrument for caring for Justin, but really it is God who cares for Justin all along. My humanness makes me want to protect him, but no person can do that for anyone else no matter what. I don't want Travis to be hurt either, but I know he will. I just pray that all of things that happen help him to grow closer to God. That is my prayer for Justin too, but of course in a little different way. I pray that the people he touches will see God. Everything that happens is a way to show God's glory. It comes down to: Do I believe that God can use Justin and his circumstances to show God's glory? Yes, I do. Some of that will be in my response to Justin and his life. That is promising for me. That gives me hope.

And the raccoons have been putting on quite a show for us the past few days. Randy decided that he didn't want our friend to have all the fun taking apart the deck, so he started attacking it this past weekend. Then we didn't see them for a couple of days, but then they returned and had a little party on the deck. I got a picture of a few of them:



Mama raccoon is sitting on the stump of the tree we cut down and her babies are peaking their heads out next to the stump. That is where they get up and down under the deck. The babies look like coonskin hats when they are running around.



And here are my boys. Travis likes playing with Justin, maybe too much! Travis has never had a security object, except when he sucks his thumb he likes holding on to my finger. Now that I am nursing Justin so often my hands are busy so he holds my toe, or even better, JUSTIN'S toe. That has to be distracting when you are eating. He likes Justin's toes...

Therapy

We had our twice monthly therapy with our ECI-Keep Pace therapist. For those of you not in Texas, it's the state program that provides assistance for children ages birth to 3 who are developmentally delayed in some way or another. Justin automatically qualifies based on the Down diagnosis. They provide family-based support and physical, speech, occupational, and cognitive therapy. They have tons of programs, including one for Travis when he gets older as the sibling of a disabled child. And they come to my house! Anyway, we have Lucy, and she is great. She makes me feel so wonderful every time she comes. She is very impressed with his progress. He can track objects from side to side and he is lifting his head a lot. He kept it up for almost a minute today! She is also working on his speech therapy, which at this age is mouth and tongue movements. She works with the binky and tries to get him to suck it in different ways. She gives us lots of things to practice, but they really are play-type things. His endurance was better today, but I think it was because he woke up from a 3 hour nap right before she arrived!

Heart Surgery

I have been thinking lately about our upcoming appointment with the surgeon. I think the first thing I want to do is give him a huge hug. I am SO GLAD that there are people who dedicate themselves to fixing the heart problems of the very littlest patients. There are four surgeons who only do heart surgery on children at the hospital. For the first time in my life I feel like I am faced with a problem that there is NO CONCEIVABLE WAY that I can fix. I cannot fix Justin's heart. I have to rely on someone else and trust him. I mean really, think about it. If my car breaks down, I can buy a new one. If I burn dinner, I can order a pizza. If raccoons move in under my deck, I can tear the deck down. I am a flight attendant and I even joke with the pilots that I can probably land the airplane if needed with all the movies I have seen. (They are still not both allowed to eat the fish for dinner though; it's ALWAYS the fish!) I can make it though life without ever using the services of an interior decorator, a personal trainer, or a financial planner. But I need the surgeon in a way that I have never felt like I have needed anyone before. I don't feel hopeless, but helpless. Maybe it's because it's my baby, but whatever it is, I love our surgeon already.

A Little of This and A Little of That

Yesterday was a big day for us. Or should I say, last night was a big night for us. Travis spent the night with his Me-Me and Pop last night for the first time. I know it was harder for us than for him. He is not a very good sleeper and he often wakes up before 6 am, so we were excited to be able to sleep in for the first time in the 2 plus years since Travis' birth. We thought we might get a call to get him in the middle of the night because whenever we are away from home, Travis tends to wake up even more during the night. I know that whenever Travis spends the day with his grandparents they sleep VERY well that night, so I think it will be safe to assume that they will sleep very well for a couple nights after this!

I had lunch yesterday with a woman who used to attend our church whose son has DS. He is now 25 and works at Kroger bagging groceries. She shared a lot about his growing up and high school and the emotions that she has experienced. At the time he was born, there weren't as many opportunities for children like her son, and she was encouraged to send him to an institution and not expect much from him. She brought pictures for me to see and she said that it was a little hard to go through everything just because it was a bit like reliving it again. I just watched a video from his high school days as manager of the football and basketball teams and it was amazing the things he has done. He was featured as athlete of the week on a local TV station even though he never played a down of football. How can we say that he cannot accomplish much? The message of Jesus Christ was spread to hundreds and maybe thousands through him. Everyone spoke of his encouraging words, and his prayers for them. I cannot help but be lifted up knowing how endless the opportunities are for our precious son.

We are in the midst of a small baby boom at our church. We had 2 more babies born this week. There will be about 12 babies born between March and September by the time we are done. It is hard to see and hear. Just a bit. I can't help but be sad as everyone is enjoying their healthy babies. I don't want anyone not to share their joys and milestone accomplishments with us, but it still hurts. Just a bit. I can't say it will get easier. I don't know. I love that Justin will have other children his age to push him and encourage him, but part of me cries inside. Just a bit.

And then there's the coons: We have decided to attack them head on and take away their home. A family friend has agreed to tear down the deck and re sod the area. Yeah! He will be doing it about the time of Justin's surgery, so it will be a surprise when we come home from the hospital. It will be quite a chore because not only is it a deck, but there is a hot tub with a rock waterfall. The hot tub heater doesn't work, and we have used it a total of 3 times since we moved in 9 years ago, so it won't be a huge loss. But it will be the first step in our backyard makeover. It will probably take us 3 years to finish, but at least it has begun.

More doctors and more coons

We went to the pediatrician yesterday for more shots. I thought we were just going to see the nurse for the shots, but we ended up seeing the doctor too. So we filled her in on the ENT information and agreed to delay a visit to the opthomologist for now. While we were there, she said that she had spoken with another parent whose child she sees, who also has Down Syndrome and she got her name and number for me to consider joining the informal support group that they have going in the area. The group is mostly younger kids (obviously still older than Justin) but preschool age rather than high school. The doctor told me her schedule for the summer and made certain that there would be someone in the office I would feel comfortable seeing during the times she would be out. And then she gave me a hug if she doesn't see me before the surgery to wish me good luck. All this makes me feel like we have definitely chosen the right doctor. How great is that?

And the raccoons have become very brazen. They come out during the day and drink water from the rock waterfall that we have in the backyard. And they sit and look in the french doors into the living room. The mother (I call her that, I cannot say that I have checked this out. I think she is a single mother.) leaves at 7:00 pm and goes to get breakfast for her kids and the rest must leave after that because the whole gang comes back at about 6:00 am. Travis now thinks that every animal that comes through our yard is a raccoon. And there are many because we are the only ones without a dog in our area. It is a little fun to watch, but it is freaky to think they are under the deck when we play on it during the day. I do take solace in the fact that they are probably more scared of us than we are of them....right?

ENT

Today we went to the ENT (Ear, Nose and Throat). There is not an issue currently, but it's one of the doctors with whom we need to make contact for the future. We received positive and negative news.

First of all, the mid-facial hypoplasia (the underdevelopment in the eye area that gives children that "Down's look") is not that severe. We knew that, it's one of the things that made it difficult to identify Justin. But that is actually good news for any potential sinus issues. That "pressed-in" look makes for narrow sinus passages that get infected easily, and then turn to more serious issues quickly. So, in noting that, it means that Justin may not have those problems. Yeah! We just have to pray that that part of his face continues to grow and keep pace with the rest of his face.

Second of all, Justin's ear canals are VERY narrow. Even small for Down's children. She couldn't even see his ear drums with the very smallest tip. This means several things: If he gets an ear infection, we probably won't be able to tell visually. If he has a fever and he is pulling at his ears, we will just have to assume it's an ear infection. That means he will probably have to have his tonsils and adenoids removed at some point. And they cannot put tubes in his ears because they cannot SEE his ear drums to do it. This also means that he will probably have some sort of hearing loss. This is just because the canals are small. Down's tends to cause hearing loss from fluid build up, but we cannot even see if there is fluid, to know that it's a problem. The fluid build up causes damage, which then causes hearing loss. This is the way it works as best as I can tell.


So, this means that we have an appointment with an audiologist to check to see what he can hear now. Justin has not had a successful hearing test yet, so we expect that this will show some sort of problem, and we will have to return an a few months to try again, but we need to establish a baseline to see what changes.

I was thinking as I left the doctor that I was very grateful to have the appointments mapped out so I know what to look for and what to expect. I know that with the diagnosis for Down's that there are things that are issues. Other parents with something that gets diagnosed late, or maybe even never are just left wondering. They don't know when to make the call when they see something that doesn't seem right. I feel odd saying that I have an advantage, but in some ways I feel that way. I have an incredible team on my side and it makes me feel hopeful.

Raccoons

They're back!

Some of you may recall about 7-8 years ago we discovered a family of raccoons living under the deck in our back yard. We couldn't find anyone to take care of them, so Randy bought a trap at Academy and searched the internet for what would attract raccoons. We caught: 4 raccoons, 1 armadillo, 1 possum, and 1 neighborhood cat who was in the wrong place at the wrong time. The possum and the armadillo were easy to get, bu the raccoons were another story. It took a lot to get the raccoons. We could only use one method of bait one time before they would figure it out and not go in the trap. Or they figured out how to reach through the side without entering the trap. It was quite the challenge. And once we did get one, it was very destructive. One of them tore a piece of siding off the garage before we could release it far far from our house. We learned to set the trap in the middle of the porch away from anything.

Yesterday, we spotted a mother and her 5 babies coming back from their night of prowling the neighborhood. And of course they are living under our deck. They will probably be there a while since I am not sure that Randy has the energy to trap them right now. And marshmallows are their favorite food (who knew?) and Travis eats most of the marshmallows in our house these days!

Where do we go from here?

So now that we have a diagnosis, the adventure begins. There are books to read, doctors to visit, plans to make, and most of all prayers to pray. It seems like it will never end. In the midst of it all, I have to remind myself that Justin is still a baby. That is what I need to remember most: He is a baby first and he had Down Syndrome second. It feels like a strange thing to forget, but it is easy to do. I remember thinking, "Is that a Justin thing or a Down's thing?" But in the end they are the same. But where am I going to focus? I choose Justin every time!

We have all the appointments made, and Travis is getting very good at going to the doctor. So far he has been really good. We don't take him to all the appointments, but there are so many that I can't leave him behind all the time. We did find out that we have to have open heart surgery for Justin the end of July. I don't understand it all, but my goal is to know it all by the time the surgery happens. We are not looking forward to it, but we are getting prepared. Texas Children's Hospital is fantastic and we think they will make the experience the least painful for us all.

This week I went to a Mom's Coffee Meeting that the Down Syndrome Association of Houston has every month. It was really a great experience. There were about 15 moms there, with children ranging from about a year to 19 years old. It was so helpful to hear their stories about the things they have gone through, and to see where we can help and advice. It has been a little while since I have cried about Justin, but they made me cry again. In a good way! Seeing so many people who have gone through the same things makes me feel incredibly encouraged! And several people mention seeing God working in their lives. Actually one person used the phrase "God thing" like we have used about seeing Justin's condition and it made me feel like God was speaking to me and saying it would be okay. I am looking forward to seeing some of the ladies again next month, if the price of gas doesn't keep everyone homebound!

The Beginning

So, I decided that a blog might be the easiest way to share information about our family with other family, and anyone who might stumble across my random musings. The main subject will of course be our children, and mostly Justin for right now, since he has the most to tell.

Some people have asked about Justin and his diagnosis of Trisomy 21 (Down Syndrome) and I wanted to share with anyone who wanted to know how we discovered his condition.

Justin is our second child, in fact, our second son. We didn't find out the sex of this child- I got my way this time- so we didn't have any prenatal tests, ultrasounds, or anything. I didn't even know the number of heartbeats because I didn't want any clues! We delivered at a birth center, as we did our first son, and the experience was as great as the first time. My sister was able to be there with us and my mom made it to town just in time. We went home shortly after the birth and everything seemed okay. Later that day, my husband said that Justin looked a bit different to him, and I had the same thought. We couldn't figure out who he looked like. We started talking and both agreed that he looked like he had Down Syndrome. We didn't know any of the physical characteristics to look for like we do now, but something was off to us.

The next day at the pediatrician's office after he finished the exam we mentioned our concerns. He said that he could see what we were saying, but he hadn't really noticed it before. He gave us a referral to the Genetics Clinic and we made an appointment. I called the midwife and very tearfully told her what had happened and what we were thinking. She said that she had seen what we saw, but she wasn't certain, and she wanted to wait to see what we would say. She encouraged us to have the testing for our peace of mind. When we saw her later in the week, she said that she didn't see anymore what she had seen at his birth, but we already had the appointment. We decided we would rather have the doctor laugh at us than not know.

We went on the 10th day of Justin's life to the Genetics Clinic. We had to take Travis with us because we couldn't explain to anyone why we need someone to babysit him beginning at 6am. The Geneticist was not convinced either way and we had to do the chromosome analysis to be certain. He said that he wouldn't be surprised if he did or didn't have Down Syndrome. The most difficult part of the day was having all the blood drawn that was needed for the tests. They drew the very most they could given his weight, and they thought he might have to come back for more. Then began the waiting. They said it could take up to 2 weeks for the chromosome analysis, but some of the other tests could come back earlier.

In the meantime, Randy's aunt passed away and we attended her funeral. It was a good opportunity for the family to meet Justin and enjoy Travis. It was difficult having other people dote on him because some of his features were things that were markers for Down Syndrome. I was scared to take Justin out because I was sure that everyone could see what I was seeing and they would ask something that I wouldn't know how to answer. (Where did he get those small ears? What are those spots in his eyes?) I purposefully avoided anything on the Internet that mentioned DS and I didn't look for anything that would make me wonder. I knew all I could do was wait. We got a call at the funeral, but waited until after it was over to return the call. It had only been 4 days since the test, so we thought it had to be one of the other tests, not the chromosomes, but it was, and the test was positive. He had an extra chromosome 21, Down Syndrome.

We were devastated at the least. I jumped out of the car and got Justin out of his car seat and clung to him crying. Randy was still on the phone and couldn't concentrate on what the counselor was saying. He had to call her back the next day. We had to think about what to do. I wasn't sure I could drive home, and then when I got home my mother was there with Travis and we had to tell her. We were supposed to meet my dad at the airport on his way through and I couldn't do that. I couldn't think very straight. It all happened so quickly.

We had to tell our family and friends and we did it gradually over the next few days and weeks. The response was so much more than I ever hoped. Everyone has been amazing. We have a long road ahead of us, but I know we have lots of people on our team to help us through it. All I can say is that it has been a God thing in every sense:

We believe that God opened our eyes to see what we didn't even know we were seeing and prompted us to get the help that we needed; and he closed other people's eyes to protect us in the meantime.

Many babies with DS have heart conditions that cause problems at birth, and that could have been even more serious at the birth center, and Justin didn't have any serious issues at birth.

We were so glad that we discovered the DS and didn't have someone tell us that something was wrong with our baby.

Randy was concerned about getting the call with the results of the test at work, and God planned for us to be alone with Justin so that we could hear it together.

God has been watching over us and we have confidence that he will continue to watch over us. He is good all the time, and we trust his plan for our family in every way.