Musings, Thoughts and Other Stuff

"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose"

Romans 8: 28

I have been thinking about our current direction in life allot the last few months. Because we found out before Laura was born we were able to prepare emotionally and mentally for what the three of us would be going through. I am still amazed at how much the two words "Down Syndrome" that we heard back in March have taken hold of our life. Because of these two words we are making friends, and meeting people that we would have never met. I can tell you that the Down's community is an incredibly supportive, informative and caring community.

As you know, we toured the Rise School Last week. Their program is incredible. When we toured the school we were amazed. Each of the teachers and care givers were very active with the kids. They used multiple teaching techniques (which included singing and a microphone that the kids could not wait to use) that helped the kids to better learn the lesson for the day. Sign language was taught, to give the youngest kids the ability to communicate. In one class room the kids were so excited to see a new baby, that they gathered around Laura and oohed and ahhed over her every movement and squeak. It was so much fun to see them enjoying everything about their day, and to be treated like normal 2, 3 and 4 year olds. What really surprised me was to see how many adults with Down Syndrome worked at the school. The Director told us she was very proud of the fact that she is able to employ 5 Down's adults. We are currently on the waiting list and are very hopeful we will get in, in 2010. So if you are on the same waiting list and are ahead of us, please know that your spot will go to a beautiful girl if you decide not to attend the Rise School.

Some of the doctors we have met have also introduced us to a few couples. These couples are a little further along in their lives with a Down's child, but they have been amazing resources for us. They have guided us to several of the websites that you see posted on this blog. We are looking forward to getting to meet them face to face in the future. This will likely happen at one of the many support group meetings that happen in, and around Houston.

We have also met a couple who have a newborn with Down Syndrome. Their child is just about the same age as Laura. We are excited about being able to go through this with a couple that is in our same place. There is something reassuring about knowing you are not alone. Having these kinds of resources to draw from, beyond friends and family (whom we love and are incredibly supportive as well), is amazing.

If you are feeling overwhelmed, scared, frustrated, angry or any other "negative" emotion it is OK. You are not alone. There are many people out there who know how you feel and what you are going through. Reach out to them. We have found that being able to lean on the Down's community has helped us in ways we could never fully understand. We thank God daily for all of you.

A cascade of prescriptions later . . .

"And we know that God causes all things to work together for good to those who love God, to those who are called to His purpose."

Romans 8: 28


First, I need to apologize. I am sorry there have not been any updates in over a week. Unfortunately I was sick for most of that time. I had a urinary track infection and bad diarrhea. One day I was running to the bathroom every 20 minutes. I know that is more information than anyone needs, but those who know me know I sometimes like to go for that ewwwwwwwwwwww factor. It is fun for me. An antibiotic and some Imodium AD and I am feeling better. Blasted conditions made me miss three days of work. Even worse I could hold or play with Laura. I just got to wave to her from a short distance.

Now for the really important things. Laura is doing great. Friday, Laura had an audiology exam. Everything seems to be OK. The Doctor and Audiologist were alittle confused about why E.C.I. would want a full work up on a 5 week old. Especially, since it would not add any information to what was learned in Laura's newborn screen. The audiologist said that this would normally be done around the 6 month time frame. They were going to contact E.C.I. and try to find out the reason for the screen. We have not heard back from either. I skipped the appointment because of my afore mentioned health issues.

Yesterday, we had 2 appointments for Laura. The first was with her pediatrician for a weigh in. Laura is coming in at 9 pounds and almost 8 ounces. She is growing and growing and growing. Tara and I are having a hard time wrapping our heads around the fact that Laura has put on nearly 2 1/2 pounds since she joined us in the out world. I swear, most of that weight is in her cheeks. Dr. Pielop did notice she had a yeast infection. He gave us a couple of prescriptions for Laura (one topical for her behind and liquid for inside her mouth). Lets hope they work.

Yesterday afternoon, we went back to TCH to meet with Laura's cardiologist. Here we waited forever. I do not understand how an office that stresses that you be on time for your appointment can make you wait for over an hour. It can drive me a little nuts. Sometimes Tara suffers the brunt of my frustration and boredom. She really is a trooper. I think I will keep her.

Once we got in things moved a little faster. Laura's cardiologist asked us how she was doing . We told him that her breathing was becoming more labored. When he checked her lungs he did not hear anything unusual. He did notice that her heart was beating a little faster than it should. This was expected given her heart condition. He said otherwise everything looked fine. We told him we seemed to get the feeding thing up and running one day (for a day she took more than 40 mL's at each feeding and had one feeding where she took over 55 mL). Then we dropped back down to about 20 mL on average. This was also expected, and is a sign that she is laboring more. At this point the doctor wrote a prescription for Lasiks. This should slow things down a little and hopefully get her back to feeding properly.

On the way our we saw Dr. Ayers. She is the specialist that diagnosed Laura's Heart problem. It was great to see her, and have her meet Laura for the first time.

The real scare happened today. To fill you in completely about what happened we must get in our time machine. Yesterday, between appointments Tara noticed a few drops of blood when she check Laura's NG tube placement. She called Dr. Pielop. They talked for a few minutes and decided to keep an eye on it. He said more than likely the NG tube had either given Laura a small nose bleed that had run to her stomach or the tube had irritated Laura's stomach. For the rest of the day everything seemed fine.

This morning at 4:30 (I still cannot believe I regularly and some what willingly get up that early, even if am grumpy) I checked the placement of Laura's tube in preparation for feeding her. I pulled .5mL of partially digested blood from Laura's stomach. This prompted a call to our pediatrician. He told us to take Laura to the Emergency Room at TCH. I did not go (because I did not want to miss another days work). It turns our that it was acid reflux, and that Laura has to much stomach acid. Tara and I are not sure who she get that from, as we both deal with it on a regular basis. Another prescription later, and she is doing fine. The doctor did tell us that we needed to keep Laura more upright when feeding her through the tube as well as for 30 minutes after. He also recommended raising her bed alittle higher. That last bit might have been the pharmacist over at Briargrove Pharmacy. I was very glad to get to get off of work a little early so I could hang out with Tara and Laura this afternoon.

I have never been a fan of not knowing. I do not like being in situations where I look like an idiot. Who does. But this morning was worse, while I was waiting for Tara to call me. Yes I was at work. Yes I did my work. But it was torture knowing there was something wrong with Laura, and there was nothing I could do about it. I know this is going to be a reoccurring situation, but that does not mean I have to like it. It really was not allot of fun.

In Less than 36 hours we now have 4 prescriptions for Laura. I do not think that I have ever had that many doctor ordered drugs to take at one time. Obviously that seems Like allot to me. So that is the catch up on Laura and what is going on. I hope everyone who reads this is doing well. I will have more later.

"'For I know the plans that I have for you,' declares the Lord, 'plans for welfare and not for calamity to give you a future and a hope.'"

Jeremiah 29: 11


Today I aaw something that was incredibly beautiful. I saw a place where children with Down Syndrome are loved, cared for and taught. The Rise School has an amazing program.

All I could think of as I was looking into the faces for those sweet innocent children, was what a long hard road Laura has. It broke my heart as I realized that her road gets harder and harder every day.

I firmly believe in the the laws of physics. One of the corner stones of those laws are the laws of Thermo Dynamics. The second law states that the universe is in a constant state of entropy. That means that the universe is proceeding from order to disorder. Not surprisingly The Bible predicts the same thing.

In our day and time we can see this happening. For proof I offer a simple example. I have lived the overwhelming majority of my life in the west side of Houston Texas. It is an upper middle class area that is quite nice. 20 or 30 years ago in most neighborhoods in the afternoon you could see any number of kids of every age running around at any time of the year. It was no big deal. The kids were considered safe in those nieghborhoods. Now kids are enroled in after school programs, no matter what thier age (sports programs and club meetings in Junior High and high school are basically aimed at giving the kids something to do until mom or dad gets off of work). More and more kids are enroled in private schools, or are home schooled, because thier parents do not trust the public school systems to keep thier kids safe. And who can blame the parents. Just watch the news and you will see evidence of this.

And it will continue to get worse. Just read some of The Bible prophecies that have yet to be fulfilled, but are only indications that the end times are getting nearer. It is into this world my wife and I brought a child. We both love Laura dearly. She is the greatest thing that has ever happened to us. She is beautiful and more fun that I ever thought possible. She is perfect.

As we toured The Rise School, I could not keep these thoughts out of my head. If she gets in, she will be safe, protected, loved, taught and cared for in away that is designed for Down's kids. She has her family, and mommy and daddy's friends to also keep her safe and fill her world with love. But, someday someone will try to take advatage of her innocense. They will use her sweetness to hurt her some how. That chances continue to rise with each passing day. It is my fear that for everything we will give her, that she will not be able to protect herself from this preson (whoever they are). Tara and I both pray that this never happens. We are clinging to God's promise to protect her all of her life. Please pray for her safety, and for the saefty of the the innocent little ones out there the world over.

The Journey, Part 2

"For You formed my inward parts;
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works, and my soul knows it well."

Psalm 139: 13-14


Where did we leave off? Oh that's right the new doctor in December. Enter Dr. Plavidal. To say the least he is a character. I am sure everyone remembers the lamp that Ralphie's dad gets as a reward in the movie "A Christmas Story"? Well Dr. Plavidal liked the lamp so much, that he has 4 of them in various sizes. He thinks they are to funny. His staff roles there eyes at him allot. Needless to say Tara and I liked him right off the bat.

So the first appointment with him goes well. This was in December 2008. The first ultrasound is shown below. The next bit is the email I sent out after the appointment:

"Well the three of us had our third doctor visit today. The little one is just over 2 inches long and is doing great. In fact the little tike was very active and refused to stay still for much of the appointment. Every time Dr. Plavidal had the ultrasound equipment positioned to take “a perfect picture” the baby moved. The doctor would then spend the next minute or two trying to get a good position for a good shot of the baby. It was actually quite entertaining to watch. It also continues to affirm my belief that this baby is dominated by my side of the gene pool. My many proofs are this:

a. When Tara eats spicy food (especially Mexican food) she feels better
b. When Tara eats french fries she feels better (most of the time)
c. When Tara eats Blue Bell’s Cookies and Cream ice cream she feels better
d. The baby does not like to have its picture taken

The included picture is a great profile shot the kiddo. Clearly visible are the head, torso, legs and left arm. You can also see the skeletal structure starting to form. The bones will be the brighter white patches on the baby. The heart is beating at 163 beats per minute, which is right in the proper range for being 12 weeks along. Overall, Dr. Plavidal is very pleased with how the baby is looking and developing.

The coolest thing about this appointment is that we got to hear the baby’s heart beat. It took a few tries to hear it, because the little turkey was moving so much. The sound of the baby’s movement was strong enough to overpower the sound of the baby’s heart beat. Once we got a relatively still baby, and a good picture, the doctor turned on the sound. It was really great to hear, for about 3 seconds. Then the kiddo decided to move again and the movement drowned out the heart beat."

In January we had our next appointment. It went well, but our excitement was tempered by the loss of Tara's grandmother. To all of your who sent prayers and well wishes to us and for us, we again thank you. I did not send and email update because of everything surrounding Granny's passing. At this time we declined to do an amniocentesis as we did not think we had a reason to. Furthermore, we knew that no matter what it revealed, we were going to keep the baby. So there did not seem to be a good reason.

In February we had our next appointment. With this one we received a major piece of information. One everyone one of our friends and family had been asking us about. Here is the email I sent out to everyone.

"Well it has been an interesting month. 4 weeks ago we went for our monthly check up and everything looked fine according to the doctor. We got to see the baby’s brain. That was so cool. Both hemispheres were formed and district. The he showed us the baby’s stomach. It was a tight, round, dark ball and was filled with amniotic fluid. He said that the shape is good to see, because with down syndrome babies the stomach often (not every time) will look like a dumbbell. That was not the case, so the doctor is quite happy.

As most of you know two days later Tara’s grandmother passed away. Her passing tempered our excitement over the last appointment.

Now we are in week twenty, and just had another check up. The doctor said everything looks great, and that the proud mother to be is progressing nicely and is right where she should be. The doctor did a quick ultra sound and said the baby is developing beautifully. Which brings me to the question everyone has been PESTERING us about. We do know the sex of the baby. It will be a . . ."

I then turned on the out of office assistant, and shut off the computer. The our of office assistant read this way

"Like we would tell you the sex of the baby over email. You are just going to have to call us."

We then left home to run some errands. This did not go over well with a great many people. We received several very upset, to out right angry, phone calls to our home then our cell phones. I still do not understand why everyone did not think that this was as funny as I did. I guess most people do not have as good a sense of humor as I do. Oh well.

The next appointment was very uneventful. I did not even send out an update. By this time we were at the end of February or at the beginning of March 2009, and we were approaching the end of the second trimester. I will pick up here next week.

First days suck!!!

"For Your formed my inward parts;
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are your works,
And my soul knows it well."

Psalm 139; 13 - 14


For as far back as I can remember I have never been a fan of first days (except summer vacation). First day of school, first day of work, first game of the little league football or baseball season, pretty much the first day of just about anything. I always viewed them as the start of something that I had no influence over. Because I did not know what to expect, I did not want to go.

My some what pessimistic out look always had me viewing these new starts as potential disasters waiting to happen. It would be the start of new school year, and I would fail every class (the ensuing punishment from my parents did not bother me because it would have been deserved). It would be the start of a new job, and I was sure I would do something to get fired (which would have my wife and I out on the street because we could not pay our bills). If I was playing sports, I would cause our team to lose every game (I was sure of it).

However, today's first day sucked for a completely different reason. It was my first day back to work after Laura's birth. My boss Nick was very grateful to see me. At least he said he was on several occasions as we discussed what projects he had waiting for me. For those who do not know I work for a retail company called R.E.I., and my bass and I spent most of my first hour and a half back at work discussing what tweaks could be done to enhance the department.

It was nice to have a bit of the old routine back. Seeing many of my coworkers again was quite nice as well. It fun to catch up with what is going on in their lives, and to discuss Laura and how she is doing.

However, the day sucked because after spending the vast majority of the last month with my daughter, I did not want to leave her. When I had people ask me if I was glad to be back to work I answered honestly no. I would have rather been home playing with my daughter. I know she still sleeps most of the time, but there is something reassuring about being able to check on her when ever I want. To hear her little squeaks and noises, to be able to pick her up, feed her and yes change her diaper is just to much fun.

So today sucked, but I made it through. It will get easier for me I know. That does not mean I am happy about it getting less and less difficult to leave my daughter. At least when Tara goes back to work she will get to take Laura with her.

I am hearing the sounds that indicate that my daughter needs some attention from her daddy. I think I will go investigate what surprise she has for me now.

The end of appointments for now.

"For You formed my inward parts;
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well."

Psalm 139; 13 - 14


Laura is 1 month old today. That means it is all up hill from here. This is going to be exciting.


OK, today ends the latest round of doctors appointments. 3 appointments in 2 days is allot if you ask me. Our pediatrician agrees, and was sympathetic.

Yesterday, I went over the results of Tara's doctor's appointment. I also discussed our appointment at Texas Children's Hospital. However, I did not give those results, and I am sure many of you are curious.

Over all Laura's cardiologist Dr. Macicek, was pleased with her. She was a good weight and was growing nicely. Her x-ray of her lungs looked good and did not show any problems. He wants to do a couple of things in anticipation of her coming downward trend. First, he wants to get more calories into Laura at each feeding. To do this we are going to mix her formula a little thicker. His goal is to store extra calories in her while she is still doing well. That way, when we hit the point where she starts her downward trend, due to her heart issue, she will still have the calories to burn and stay healthy, even if her caloric in take starts to drop.

We needed to meet with the Nutritionist to determine what ratios we need to mix Laura's formula at to get the intake the cardiologist wants. That is when all of the hoopla began that I wrote about yesterday. We have started mixing the formula at the desired ratios, and are looking forward to seeing how it affects her.

Second, during the check up yesterday the Cardiologist noticed an unusual heart beat for Laura. He assured us it was being caused by her heart condition. We did not have the heart to let him know that our pediatrician had noticed the same thing 2 weeks ago and was not concerned. Strangely, both our cardiologist and pediatrician described it as an almost absence of quiet.

The third thing he wants to do, is to see Laura again in 2 weeks to see how she is doing. At this point we may start Laura on Lasiks. It will depend on how she is doing and responding. We need to keep an eye out for circulation issues which could present as a blue tint in her hands and/or feet. The x-ray and the check he did this time did not reveal any fluid on the lungs. Dr. Macicek did indicate he wanted to try to get ahead of the curve for Laura as quickly as we could.

Today, we had a weigh in with our pediatrician. Laura is coming in at 8 pounds 7+ ounces. Meaning, she is starting to gain weight at a smidgen over 1/2 an ounce a day, which is amazing considering how much goes in to her. Dr. Pielop is quite pleased with her growth and weight gain.

To resolve the feeding issue from yesterday, we decided that it would be best to let Laura tell us when she is hungry. During the day we will wait until she makes the feeding motions and noises or until 4 hours pass between feedings. This will allow her to realize she is hungry and still let her pack on the calories. It will also give her the opportunity to get the feeding down. This afternoon she seemed to be getting hungry at about 3 1/2 hours. As we talked this through with the pediatrician, he deferred to whatever the nutritionist wanted. Which is fine, we just would have preferred a better attitude.

We just had two firsts with Laura. It is quite exciting. The first new thing we did was that we took Laura out to dinner with her Granny, Tara and I. We went to restaurant close to our home that we all enjoy called Buffalo Grill. The staff there were extremely happy to see Laura for the first time.

The second first happened while Tara was feeding Laura. Laura decided she needed to soil her diaper. And boy did she. I was in the next room and heard it. Unfortunately, Laura was sitting in Tara's lap taking her bottle, when the blow out happened. And by blow out, I mean out the side of the diaper and into Tara's lap. I am very excited (especially since it did not happen to me, yes I know it will). This was the first time Laura has done this trick. I am sure it will not be the last. Still, it was impressive.

We received a call from The Rise School today. They called to schedule a tour for either tomorrow, or next week. We had to opt for next week. I go back to work tomorrow, so that was not an option. We are looking forward to the tour as it is the first step to get Laura into their program. After the tour Laura goes on a waiting list for the school. We are hoping that we will not have to wait long. Unfortunately, we did not get her signed up before she was born. The school is that exclusive. If you are pregnant and have a confirmed diagnosis of Down Syndrome check out their web page. I have link to it up in the top right hand corner of the screen.

OK, folks it is getting late and I am getting tired. I will try to post tomorrow, and let you know how I handled going back to work. I am pretty sure I am going to be miserable being away from her all day.

Appointments, appointments, & more appointments

"For You formed my inward parts;

You wove me in my mothers womb.

I will give thanks to You, for I am fearfully and wonderfully made;

Wonderful are Your works,

And my soul knows it very well."

Psalm 139: 13-14

Well today started last night. You see, we had two doctor's appointments today. One was for Tara with Dr. Plavidal. The second was for Laura with Dr. Macicek at Texas Children's Hospital.

To prep for these appointments, I got Laura's stuff ready last night. This included getting a couple of bottles ready, and putting two nipples aside. Grabbing her two syringes (one small, one large) in case we need to feed her through her NG tube. And of course her stethoscope to check the placement of the NG tube, before we do the tube feeding.

Then there was packing Laura's diaper bag. Diapers, baby wipes, Vaseline, baggies, change of clothes, blankets, and I think that was it.

Today we got up about 6:00 am. Tara headed off to feed Laura, while I grouchily went about getting our breakfast ready. As many of you know, I am not exactly what you call a morning person. Getting up before 9:00 am seems like the most egregious of sins to me. How can anyone be happy to get out of a nice warm bed for any reason. I have been known to sleep through alarm clocks going off (those that survived). But up I got. After everyone ate, it was a hustle to get everyone ready. Mostly Tara and I, because of what I had thought I had done last night.

So, I do all of this prep work last night, to help get us out the door by 8:15 am to be at our 9:00 am appointment with Dr. Plavidal. Some of you maybe saying that is an awfully early time to leave for a 9 am appointment, and you are right. But you may not be familiar with the RUSH HOUR TRAFFIC here in Houston. It sucks, to say the least. So the smart money, when you live in the Galleria area of town and are planning to get on the South West freeway for any amount of time, is to plan for a long creeping drive. So imagine my surprise when we leave at 8:10 am (yup 5 minutes earlier than planned) and we are at Dr. Plavidal's office by 8:25 am. That is right, no traffic. Tara and I did not know what to say or do. We were in a state of shock. I know it is the baseball all-star break (go Hunter and Tejada), but I did not know that meant everyone was off for the day. It was both cool and a little eerie.

The appointment with Dr. Plavidal went well. Tara is cleared to do what ever she wants or needs, aside from lifting heavy weights (you know cars, heavy bags, furniture). She was quite excited. So was I. She can drive me around now.

We were out of Dr. Plavidal's office by 9:30, and headed to Texas Children's Hospital for our 10:00 am appointment with Dr. Macicek. Fortunately they are not far apart and it only took about ten minutes to drive and park. We got checked in and waited, and waited, and waited. Then just when we were about to be bored out of our minds, we waited some more. At about 10:45 am we decide we needed to go ahead and feed Laura. We get a bottle warmed and discover that I forgot to pack the small syringe, plunger for the large syringe and the stethoscope to check the NG tube placement. This means that we had to feed her from the bottle. Which is fine. Yesterday she got up to taking an ounce from the bottle in about 30 minutes (this fact will become interesting in a minute). So as we are getting started with the bottle feeding we get called back for the X-ray of Laura's lungs.

So we go back. In order to get the best picture possible, we had to take Laura's shirt off. While I was taking it off, I accidentally pulled her NG tube out. This pretty much nixed NG tube feeding for the day. Anyway, we get the X-ray done. Then we get sent back out for . . . can you guess?

I bet you can.

That's right, more waiting. Fortunately, this time it was not as long. Only about 10 minutes or so.

So it is now about 11:15 and we are all tired and hungry. And sure enough every time we try to feed Laura someone comes in to check her or talk about her. It was really frustrating. So we meet with Dr. Macicek and the attending for about an hour to discuss what is going on with Laura. Bottom line is they want to increase her caloric intake. Dr. Macicek calls over to the nutrition department to have a Dietitian come over and discuss what we need to do.

This lady comes over, sits down, and asks what our current routine is. We explain that Laura gets about 85 mL milk/formula every 4 hours. The lady's response is that, this is wrong and we need to be feeding Laura every 3 hours. She then asks why we are on this type of schedule. We explain to her that our Pediatrician is trying to get Laura to wake up for feedings instead of us waking Laura up. She again informs us that this is wrong and that we should be feeding Laura every three hours and waking Laura up. I pointed out as nicely as I could (I was fuming at her attitude and the fact that according to her, everything we are doing is wrong) Laura sleeps through the feedings at 3 hours. We also pointed out that when we were feeding Laura every 3 hours, Laura was getting 72 mL's. At every 4 hours, Laura gets 85 mL. She continued to tell us that Laura is not getting enough and that we need to change it back.

She then asked about Laura's therapy. We told her that E.C.I. comes about 3 times a month. She spent about 2 minutes trying to discredit E.C.I. then said that this therapy schedule was unacceptable, and that Laura needed to be in therapy multiple times a week. She then told us that TCH has many therapist's that could work with Laura, or she suggested that we could even hire a private therapist to work with Laura. It was all I could do to not rip this lady a new one.

When we finally left I was livid. Fortunately, Tara and I were able to talk it out and I felt better. Tara was not much happier than I was. Unfortunately, things like this are going to happen. If these suggestions made by "knowledgeable people" do not work with what you can do, you do not have to give in to them. You are going to do the best you can with your Down's child. That is all any of us can do. Make sure that you love your child, and you are showing your child your love. That is what they need more than anything else. The rest will fall into place.

Anyway, we finally left TCH about 1:00 pm picked up lunch on the way home and then crashed from the day, after we replaced the NG tube (again, I hate that thing). Thank you to Jennifer Trevathan for bringing us dinner tonight. It is much appreciated.

Below is a picture of Laura once we got her back home today.

Week in review 7-11-09

Well it has been a week of many high's and one awuful low.

The high's included:

- Laura weighs 8 punds 3 ounces

- We started with Early Childhood Education

- Laura got to meet her Auntie Kim and uncle Cliff

- Laura is doing great with her tummy time

- A couple of decent breast feedings

The low's (well one):

- Moving the NG to from the right nostril to the left nostril

The Journey, Part 1

"The Lord said to him, 'Who has made man's mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the Lord?'"

Exodus 4: 11


It is my intention each Friday recount another part of the journey Tara, Laura and I have been on from the very begining to now. For those who have been "in the loop" from the get go, much of this will be familiar. For those who have only just discovered Tara, Laura and myself, this will be a chance to see how we got to where we are.

It is my goal with this series to show to other new, or expecting, parents that have been given a Down Syndrome diagnosis that they are not alone. I am hoping that as they see the journey that we are going through that they will see that there is a great community out there ready and willing to love them, support them and encourage them. It is my hope that readers of this blog will post comments about their own journeys in the comments section for everyone to read.

That being said, let's get started.


On Wednesday November 5, 2008 Tara and I walked into Dr. Meltzers office very nervous, excited and scared. You see a couple of weeks earlier Tara had taken a home pregnancy test and it had come back positive. In fact between the time of that first test and going to Dr. Maltzer's office she had taken an additional one or two (or more) just to make sure.

Dr. Meltzer walked in to the exam room and asked Tara to get up on the table. We confrmed why we were all there, and he began the ultra sound. It did not take the doctor long to locate our very small baby. He took some quick measurements, and said everything looked great. He projected a due date of June 27, 2009 (I think). He then said he would like to see us again in a couple of weeks, and he gave us a copy of the ultra sound. Dr. Meltzer also let us know that he no longer did deliveries, but that he would have a list of doctors that he would refer us to when we came in for our next visit.

The previous two weeks had been murder for us. We had not told anyone, and it was killing us. We had our mothers meet at Tara's mom's house. My dad and step-mother were out of town. I would have to tell them by phone. So at 9:00 pm we arrived at my mother-in-law's house and handed both our mother's gift bags. My mother did not realize that the picture in the frame that we gave her had a copy of that first ultra sound. Tara stood back and waited for a minute while my mother-in-law realized who it was she was looking at. Once the reality sunk in, there was much hugging and congratulations going around.

I got on the phone and called dad while the others were unwraping their gifts. He and my step-mother were out to dinner at a restraunt. I suggested that her take my step-mother to a quiet part of the restaurant. I then chided them for being out of town for a moment. I then told them Tara and I were pregnant. They were very excited. I also let them know that we had a picture waiting for them when they got back in town.

That night I sent out an email to all of our friends and family letting them know our incredible news. I also sent a copy of the ultra sound. I seem to recall that I might have made some sort of bold statement baout the sex of the baby. I was wrong.

Two weeks later we met with Dr. Meltzer one last time so he could check Laura again. He said everything continued to look great. He handed us a list of doctors and we parted ways. It was kind of sad. Tara had been seeing him for many years and we both realy liked him. I remember thinking that I was not sure I wanted to try to get used to a new doctor in a short amount of time. Boy did we not know what we were getting ourselves into with the doctor we chose. But that will be for the next post (killer tease huh).


Below you will see copies of Laura's first ultra sounds. Even then we thought Laura was the most beautiful baby there ever was. An opinion that we still hold to. We cannot deny the truth.

Hope and Pain

"The Lord said to him, 'Who has made man's mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I the Lord?'"
Exodus 4: 11

Well today (Wednesday 7-8-09) was a day of hope and pain for Tara, Laura and I. I love and hate days like these. It actually started yesterday (Tuesday 7-7-09). Laura got to go for an unscheduled car ride, so daddy could make an unexpected run to the eye doctor. Nothing major, but I still needed to go. The long and short of it is that I have to put a bunch of eye drops in my eyes during the day, and some goop in my eyes before I go to bed each night. The goop is a little weird.

Then Laura's Granny came over yesterday evening (7-7-09) to play with her. This allowed Tara and I to get out and run an errand and go to dinner. Later yesterday evening we did the tummy time exercise again. It went very well. Laura was able to hold her head up and turn it and lay it back down with pretty good control. This was enough to have us just about jumping out of our skins in excitement. Then she amazed us even more by actually scooting on her belly just a little. The end result of that, was that she actually spun herself about 90 degrees. It was just so amazing to watch her do this all by herself, with no help from mommy or daddy.

However, she was not yet done with us. A little later when Tara was putting Laura back in her crib, Laura (who was on her back at this point) lifted her head again. This, in and of itself, is not that big a deal, but Laura did it right when Tara was about to adjust the sheet the she was going to swaddle Laura in. It was as if Laura had figured out what was coming and decided to help Tara.

Today (7-8-09) Early Childhood Intervention came by to do an evaluation. After many questions, and some hands on work, they determined that Laura is right where she should be for a baby of three weeks and three days old. We decided that our goal for the next 6 months would be to get Laura off of her NG tube, and to be feeding either by bottle or breast (with some rice cereal being worked in, with our Pediatrician's approval).

They also gave us some things to try with Laura to help her figure out her feeding. These included stroking her cheeks. This is to get her to pucker in preparation for the feeding. They also suggested that we gently tap around her mouth to further encourage the sucking motion. This made Tara and I very happy.

Once again her Granny came by to play with her for a little while. Then this evening we did the tummy time exercise. Again, she amazed us by picking her head up and turning it even more smoothly to the other side than she had done last night. She did this a couple of times for us. Who would have thought that such a simple thing would have brought us so much joy and excitement.

Then about an hour before one of her feedings she began her sucking motions. This caused Tara to lactate before she was ready. We jumped on the chance, and breast fed Laura. It was one of the best experiences that we have had yet with breast feeding.

So at this point you are thinking I see the hope Laura (a Down Syndrome baby) has given you, where is the pain? Well after the breast feeding I changed Laura. No big deal. She seemed much happier (which is normal for her) after her diaper change. We then moved her NG tube to the other nostril. This really sucks. First, you take it out. Not that big a deal. She fusses a little, but calms down once it is out. Unfortunately, you have to put it back in. Then NG tube runs through the nose to the stomach. Laura does not like this part of the procedure (not that I blame her). It is one of those thing you have to do, even though your baby does not like it. Our hearts break every time we have to do it, because she hates it so. The only thing that gets us through it, is that we know it is best for her. Otherwise it is a gut wrenching, awful experience that I HATE having to go through.

The best thing about the NG tube is that after placing it, and taping it down, is that we get to hold Laura afterword. This calms both her and us down. We will be so glad once that thing is gone.

A day in the life

"The Lord said to him, 'Who has made man's mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the Lord?'"
Exodus 4: 11

Our day goes something like this. Tara gets up about 7 or 8 am to change and feed Laura. Soemtimes I get up with her, ussually I sleep through to the next feeding though. This is usually an hour long process that includes both breast and bottle feeding (for about 20 minutes total), with anything that is left from the bottle going through Laura's NG tube. Normally, Laura does not eat much at any of the morning feedings. Then, Tara will pump for 20 minutes. After that, there is the clean up of all the equipment. This process repeats itself every three hours, 8 times a day. I usually handle most of the duties for the othe 7 feedings, so I do not feel to bad abnout sleeping through this one.

This process can be a little frustrating for Tara and I, because Laura does not appear to be a morning person. She normally sleeps, or is only barely awake, through it all. Then in the late morning to early afternoon she wakes up. She eats more from the bottle which means she gets less in the NG tube.

This routine also means that Tara and I get less than 2 hours of sleep at a time. Which is not good for us. We are very tired. However, we are excited to see that Laura does not appear to be a morning person either. We hope that her current sleepy nature in the morning means she will let us sleep in later in life (unlike a good friend of ours and her family). The key word there is hope, since we have a long way to go yet.

Then, today we went in for a wiegh in for Laura, and Dr. Pielop asked us to alter our routine. He suggested that we only feed her 7 times a day, or every 4 hours. We got very excited because that means we will get closer to 3 hours of sleep at a time. That 1 extra hour at the time sounded so good to me that it was all I could do not to fall on my knees and kiss Dr. Pielops feet. We are very excited about this. The other good news is that Laura currently weighs 8 pounds 3 ounces. She has gained 3 ounces since last week. That translates to about 1/2 an ounce a day. Dr. Pielop was very pleased with this result.

We have also started a little game called tummy time with Laura. Basically, it goes this way. We put Laura on the floor (on a blanket) on her belly for a minute. This allows her to try to lift her head. It helps her work on her gross motor skills. If you do this once a day a new born will start to lift her head. Most babies will not like this the first few times you do it. They will figure it out though, so stay with it. Once the baby gets the hang of it you can go longer periods of time. The obvious long term results are that this exercise leads the baby to figuring out how to turn themselves over, push themselves up and even begin to work on sitting and standing. Today Laura was able to lift her head by herself for about 10 seconds. We are very excited about his.

If anyone knows of any other activites like this one, please feel free to mention them in the comment section. I will try to find a way to list all the exercises in one place on the blog so everyone can find them.

Later this week we have another meeting with Early Childhood Intervention to do an assment of Laura's capabilities, and to see what kind of therapy she will need. The results should be interesting.

We hope you had a great fourth weekend. I will tell you about ours in a later post.

New Links

Howdy Folks,


Just wanted to let everyone know I have add some new links to the blog. They are to your right as you look at the screen and towards the top.



These links will take you to websites of various Down Syndrome support groups. These are all groups that Tara and I have found to have good information, and many opportunities to get out and get active. These groups are also great resource for encouragement. I know Tara have made a new friend or two that are supporters and advocates for these groups. We are grateful for their friendship, support, encouragement and excitement about our precious Laura. For those who have put us in contact with some of these groups, thank you.

Most of these groups are local to the greater Houston area. However, this means that there is a good chance that there are similar groups in your local area. Search the web. Talk to your family, friends and docotrs. You never know who knows who until you start asking. The National Down Syndrome Society may be able to put you in contact with local support groups as well.

Now for the updates. At the doctor's appointment this past Monday Laura weighed 8 pounds on the nose and over 20 inches long. She has had her first Hep B immunization as well as her newborn screens (both were done at Texas Children's Hospital). She did not like having either of these done, not that I blame her who wants to be jabbed with a needle. But she came through it like a champ.

Psalm 127: 3

"Behold, children are a gift of the Lord,

The fruit of the womb is a reward."

Two and a half weeks and counting

Well this is the first post. As of its writing, our daughter Laura is about two and half weeks old and doing well. Laura had quite the busy week this week. First, she had her first appointment with her Pediatrician Dr. Chris Pielop on Monday. It went well. He gave her the once over. Pulled ever so gently here, listened carefully there and looked in her ears and eyes as well. Over all he was very pleased with how well she is doing. His big goal is to have her be able to feed without the use of an NG tube. An NG tube is a tube that runs through Laura's nose, down to her stomach. Its purpose is to ensure that Laura gets all the food that she is supposed to get. To get rid of it means that she is eating her required amount on her own. This is something we are still working on.

Tuesday, the rep from Early Childhood Intervention came by. The purpose of this group is to help get Laura ready for her life as she grows. She will need the help due to her Down Syndrome. Newborns with Down Syndrome typically have low muscle tone as well as a host of other developmental issues.. E.C.I., and groups like them, exist to help children with these and other issues learn how to work through the issues so that they can have as normal a life as possible. In the case of Laura it means that she will go through what is called occupational therapy. This means that the therapy will focus on Laura's gross and fine motor skills. The meeting this past Tuesday was just an informational meeting. The rep. needed to get information from us as well as learn what both our long term and short term goals for Laura are. We told the rep that we want to be able to mainstream Laura in school, send her to college, and give her the tools she needs to be able to live an independent life. Ambitious to say the least.

Now we know Laura has a long way to go and we all have allot of work ahead of us, but it can be done. For anyone who is going to be facing this or other similar issues I want to warn you, there is allot of good information out there and allot of bad (particularlly on the web). The most important thing you can do is get a good support group around you. This should include your parents and close friends, doctors (your pediatrician should be the ring leader for this side of things) and local community groups. We have the privlage having a support group that is excited about Laura and wants to do what ever they can to help her. Needless to say we feel very blessed by all of this.

I will warn you that there are still some who think that Down Syndrome is best treated by sending these children away because there is nothing that can be done for them. Or if the diagnosis arrived at by an amniocentesis, there are doctors that will push hard for an abortion. These attitudes are mostly seen in the older generations. In the case of family members who have these attitudes, it will be up to you to help them see how amazing these children actually are. In the case of medical professionals who cling to these archaic attitudes you will need to find others who share your own beliefs.

Either way start at your local book store where you can find books filled with the most current and up to date information. As for you dads out there, I am sorry to say that there are not to many resources aimed speciffically at you. Most of the books will discuss either raising a child with Down Syndrome, or how the mother can cope with the diagnosis. My best advice is talk to everyone that will listen about how you are doing with the diagnosis (I know I have had a hard time with it and still do). You will be amazed at the how everyone will respond. Obviously you can post comments here as.

That brings me to my last two things. Please post as often as you like or feel the need to. I will try to have new bloggs upo every couple of days or so. Keep resposes clean. If you find a helpful resource list it in your reponse so others can make use of it as well. Finally, the next few posts will wlk you down what we were going through from the before the diagnosis to where we are currently. Please check back often.