Down Syndrome Clinic

We made our third trip to the Down Syndrome Clinic today. Justin really did well and impressed all the therapists and the new physician in charge of the clinic. We were able to see the PT and the Speech therapist. With the new schedule, they do not have any clinic days with both the PT and OT available, so if we have any concerns we are able to have a phone consult with the therapist we missed. (This time we missed OT.)

We found out that the blood work that was done at his year appointment showed that he has low thyroid (very common in DS) but not too far out of range, so the doctor wants to repeat the labs. She is also requesting the test for celiac disease, which occurs more frequently in people with DS. This is something I have been dreading slightly because of this is something that seems tough to handle, but if it's something we are called to face, I know God will provide. We have to go for the blood draw tomorrow, so please pray for an easy stick.

The PT was pleased with Justin's crawling, but she was concerned that he is not weight bearing on his legs. That is something he has never really wanted to do, and it is something Miss Penny works on every week, but it still isn't something he does on his own. He will not stay standing next to the couch or a table if we help him get there. He will not pull himself to standing. He will stand for a short time with help, but then he collapses. She tried several different ways to get him to weight bear, and just like Miss Penny, she couldn't get him to stand for more than short periods of time. This hasn't really bothered me, but she seemed a bit disturbed, which of course made me more concerned. I am a bit anxious to see what her assessment will say.

Since there was no OT, the doctor did a lot of those tests. It was funny since Justin had just had his OT evaluation, I could see the things she was testing and knew which he could do. The first thing she brought out was a bell, to see if he knew what to do with it, and he went to town with it! There was no doubt that he knew to shake, shake, shake that bell! It was difficult to get him to give it up so we could move on to other tests. He could find the bell under the cloth, he could pick up the small bead (not with pinchers though...), and he fit the circle into the puzzle. He could color with the crayons and fit the peg into the hole. He knew what to do, even if he couldn't always make it work exactly.

Speech was actually Justin's stand out area. The therapist was very impressed with his babbling and sounds. She actually said the words, "I am very impressed" which I get the feeling don't get tossed around very lightly or very often. By this time Justin was getting tired (and even fell asleep while we were talking) so she didn't get as much time with him as she has hoped. We discussed some feeding issues, and she gave us some things to try. We have seen her now three times, and she gives us the most feed back and most ideas in her reports, so that will be helpful.

I brought up the "Magic Age of 2" that the geneticist mentioned when Justin was born. Not because I am wanting their predictions, but because his next DS Clinic appointment will be right after he is 2 and I want to be prepared if there is some big announcement that starts out, "And now we are prepared to tell you how your child will turn out..." When both my kids were born I avoided the words, "always" and "never" for about 6 months because I just didn't think that I had enough experience with them to be able to judge that. Two years seems like a reasonable age, but I wanted to know how the doctor makes the assessment. She said that it is based on how he is doing up until then. For example, Justin was determined to be at about 8/9 months of ability when he was 13 months of chronological age. So using 8.5, that works out to be about 65% of chronological age. If he continues on that same curve, there is a scale that marks his level of impairment (a person who functions at a level of 65% of his chronological age is mild MR- mentally retarded). I am not entirely clear if that is how it usually works, or if there is a chance that he could slide up or down the scale. And I asked if there is any correlation between physical and mental capacity, or if one usually supersedes the other. She said not really, but if there is a choice, it is probably better to focus time and attention to improving speech. You know how little kids are difficult to understand, and people unfamiliar with a child need the parent to "translate"? That's how I envision it being with Justin, and that makes me nervous because I don't want to leave him in a situation in which he cannot communicate his needs or wants. I think that has to feel like abandonment.

I tend to leave the DS Clinic with conflicting emotions. I want them to fix out problems because they are the experts, but when it really comes down to it, Randy and I are the real experts on Justin. They offer some good suggestions, and I am so grateful for that. I am glad we have the DS Clinic and all the other resources we have here because I know so many places have so little to offer. I counted the days to Justin's first DS Clinic visit, thinking we would walk away with a treasure trove of information. Now I think of it more as an opportunity for them to gather information to help others. Sharing what works and what doesn't can only help those who come after us. I think we are so blessed, and I want to pass that on to others.

Pictures and More

I forgot to mention that another one of the things we talked about with the social worker on Monday was about which Medicaid waiver lists we need to get Justin's name on. The lists have about an 8 year wait, so we need to get on them now to make certain that we get the benefits when we need them. One list is only for Texas and the other is only for our county, so if we move from either we go back to the bottom of the list wherever we move. These are state programs, so every state is different. For example, in Maine you can receive benefits the next day, but in Oklahoma, the wait is about 7 years. And the more we talked, the more I noticed that the "blue" states get more immediate help, but the "red" states tend to have lists, long lists. Just an observation. So we almost have to decide where we want to live for the rest of our lives, if we want some of these benefits. I am supposed to keep a spread sheet with all of the numbers and contacts I have with each of these programs. We are about number 23,000 on one list, and each year we get a letter with his number and I have to verify we want to remain on the list. So the file cabinets I have will be filled VERY easily!

And we had pictures taken today. We tried last week. That says it all. This week we had more success, and this is my favorite shot of the day:

I still cannot volunteer that Justin has DS. I don't know why! The photographer was perplexed why he couldn't sit up and she asked if he was premature. I just said no. I do know there will be a time that it is clear, so I continue to bask in the joy of ignorance. I spoke to another woman whose daughter is a couple weeks older than Justin and her daughter is very clearly DS she says. And people are always coming up to her and talking about their experiences with DS. I guess some of that would be okay, but I think I would have to ask God to filter that for me and to give me the words to say to those people. I believe that God can do so much more than we ever ask of him, and I think that is one of the things I need to start to pray about.

I also got some pictures of the boys together. A bit more of a challenge, but there were some good ones. This one is a weird angle, but it has Justin smiling a bit more. I was exhausted from making Justin smile. I wish the little feather-on-a-stick worked like it does on other children!

And Justin rolled over the OTHER way! On Friday we went to the doctor for the synegis shot and while we were waiting Justin rolled over on the exam table! Back to front... and now he has done it another time too. And he is doing front to back again since surgery. I am one proud mama!

So tonight Randy took Travis out and I put Justin to bed myself. We had such a good talk before he went to bed! We laughed and smiled and for the first time be really belly laughed! It was amazing. Almost makes me want to cry. I do have to work so hard to get responses that when I do I want to enjoy them. Justin is so fantastic, but it is incredibly easy to get lost in comparisons and by-gone wishes and dreams. I love that Justin is so attached to me, but I know I am on the road to be an over-protective mother. I think I want to stray down this path a bit longer though. The rewards are still quite nice.

The Down Syndrome Clinic

We have an appointment at the Down Syndrome Clinic. Not until NOVEMBER, but at least it's something. We have heard the wait is sometimes a year. The clinic has several therapists and doctors and they do a complete evaluation and recommend a course of treatment. Then we will return every year or so to follow our progress and reevaluate. The appointment lasts several hours (what appointment at TCH doesn't?) and should give us some good feedback. We have heard from several parents that this clinic is a MUST so we are glad to get an appointment. They also have social workers to help us with all of the government programs and lists that we should check out and add our names to the waiting lists. Some of the waits are very long, including the ones for group homes, so we need to get started NOW so that we are not left without when we really are needing. It's so inconceivable that we need to plan for the time when Justin will want to leave home. He's still my baby!

Comments

I haven't been really outspoken about Justin having DS. People will comment about how cute Justin is and I just agree and say thank you. I don't mention the DS. I figure there will be a time that it is very clear and I want to enjoy these comments while I can. When we were at the audiologist I got into a conversation with another mother. She asked if Justin was okay. She asked because we were at an office with several different pediatric specialists, including therapists, and a child would most likely have some kind of problem to be at this office. I didn't know how to respond. I had to think a minute. Her child was called back shortly after that so I just said that we had an appointment for his hearing. But that made me think even more. Is Justin okay? I would say that he's just fine. He may be slower than other children, but he really is okay. It wasn't what I planned for my child, but it's what God planned and I trust that there is a purpose to that plan. I want to learn everything that God has to teach me in this, and never become dependent on my own ability.

Some people have said that I look really good (which I think is code for "You don't look as tired as I thought you would!") and that they are impressed with how well I appear to be handling everything. I would like to think that God is the cause. I am not superwoman! Far from it! I have more than a few moments of weakness, but the strength I have comes totally from God. I asked Randy last week if he thought I was more mature than when we got married and the way he looked at me you would have thought I asked him if I looked fat! He finally did say that yes, definitely, I am more mature. I then asked why he married me if I was immature, and he said because he was immature too. I guess that worked out well for both of us! The maturity has come from so many things that we have encountered in our marriage, preparing us for Justin. All those things have been carefully and purposefully planned by God. Our responses have been both right and wrong, but each has taught us something. I am wiser, but not because of me, but because of my teacher, my God. Don't look at me, look at God. I want people to see God in me. I want to reflect God in all that I do and all that I am. I fail miserably sometimes (just listen to my phone calls with the insurance company!) Don't be impressed with me, be impressed with God. And I have far to go, but God has promised that he won't give up until he has completed the good work that he has begun in me. That is the hope that I have. That's how I can make it through each day. God will not leave me, and he won't leave Justin. What a fantastic promise!

Oh, and one more story: I had Justin's 3 month picture taken and I told the photographer right off that Justin is a little "floppy". I didn't mention DS. He blew me off and said that he had taken pictures of even younger kids. The poor man tried SO hard to get a smile out of Justin, with little success. Half way through he did say, "Wow, you were right, he IS really floppy!" I had to laugh! We'll be back, so he'll figure it out before too long!

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...

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.

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.