One crazy Sunday

This past Sunday Laura and I took a day trip with my mother. We drove over to San Antonio to visit my aunt and cousin. They both have birthdays in July, so we drive over, go to lunch and celebrate their birthdays.

The drive to San Antonio was fairly uneventful. A little annoying, but uneventful. All of you people that get in the left hand lane and do the speed limit or less get out of way. The left lane is for passing slower moving traffic, not slowing everyone else down. We did stop at Buckee's for restroom breaks for all three of us, and to give Laura a snack. She enjoyed her orange juice and a couple of cheerios.

We planned on eating at The Alamo Cafe on 281. It is one of my favorite places in the state of Texas to get Mexican food. I really like the atmosphere. We first suspected something had gone terribly wrong when we looked over and saw Sea Island at the Forum shopping center. My mother and I looked at each other and thought "this is not right."

We promptly exited 35 at the first opportunity. Yes I know. We made the turn from 10 to 410. but we missed the turn that would have kept us on 410 heading west toward the airport and 281. So we made a u-turn under 35 and headed south. we turned right on 1604 heading west thinking it would intersect 281. After what seemed like forever we were rewarded with spotting 281. We then turned left and headed south on 281 hoping we would see the restaurant. After a quick stop to get Laura some whole milk, we managed to find The Alamo Cafe.

In addition to my aunt and cousin, my cousin's husband and my mothers best friend from high school joined us. Laura had a taco (minus the shell), tomatoes, cheese, green beans and a flower tortilla. Laura is feeding herself. She really enjoys food. She loves getting it all over herself, her chair, the floor and anyone she can fling it at. And she really appeared to enjoy this lunch. Further proof she is my daughter, she likes Mexican food.

To my knowledge this was Barbara's (my mothers friend) first time to meet Laura in person. The two of them spent a good 30 minutes playing after we finished eating.

Usually, when we make the trip to San Antonio we also go by two cemeteries where my grand parents are buried. This first picture is Laura sitting on my grandma's lap. She did lean forward several time to touch the headstone. While we were at this cemetery Laura played with my cousin and my aunt for quiet a while. All three seemed to enjoy the activity.

Next we went to Fort Sam. Here she got to sit in my Oma and Opa's laps. While we were here we gave Laura another snack of cheerios and orange juice. Then the three of us hit the bathrooms and we started back to Houston.

So we get on 410 heading south to I10. Unfortunately we were stuck in the right hand two lanes and could not get over far enough to avoid being forced to exit 410 heading toward the sporting center close to 410. It was only a minor side track so it was not big deal.

We eventually find our way to I10, and I turn right heading west. Yes, Houston is east of San Antonio. Yes I headed the wrong direction. So I exited I10, made another u-turn and headed east on I10. Finally headed in the right direction, what could possibly go wrong next? Famous last words.

As we are driving east we encountered slower moving traffic in the right hand lane, so when the opportunity presented itself we moved into the left hand lane to pass the slower moving cars. Then the left hand lane slowed down. The speed ups and slow downs were random and unpredictable. On many occasions we did see that the person at the front of either line was on their cell phone. This situation begs two questions. First, don't most cars on the road today have cruise control? Most of the offending vehicles were very large very expensive SUV's, and the drivers either did not understand how to use cruise control or the y could not maintain a constant speed.

The second question that gets raised is this, do you really think it is a good idea to answer your phone while traveling in a large vehicle in excess of 70 miles an hour? I realize you are trying to be safe by slowing down to 50 but wouldn't it be best if you just let the call go to voice mail? Or not make the call until your are stopped some where safe? Just some food for thought.

And the next thing we knew weather turned on us. At one point I do not think I could see more than a few feet in front of the car. The rain lasted for the better part of an hour.

Then just west of Columbus traffic ground to a halt. I am not sure why. Never really saw a reason. But this woke Laura up and she started crying. So we exited I10 and took refuge from the craziness in a McDonald's. I had a large vanilla milk shake. My mother had a large diet coke. Laura had water and yup you guessed it, more cheerios. We all used the bathrooms. and then we were off.

Traffic was at least moving, slowly. But forward progress is still progress. the crazy slow drivers in the passing lanes continued to be a theme through out the drive to San Antonio and back. even once I10 opened up to more than 2 lanes things only marginally improved. We got on the road to come back to Houston after 4 pm. We did not get to Voss/I10 intersection until nearly 8:30.

But as this last picture shows, I may have a different and much bigger problem on my hands since Laura was in the car for so long. Oh dear.

First's

Laura has had a busy week this week, and it is only Tuesday.

Yesterday (Monday 5-24-10) Laura decided it was time she helped to feed herself. This is something that Tara and Laura have been working on for some time. The closest Laura has gotten to accomplishing this goal, was to be able to grab her bowls, bang them briefly then toss them on the floor. A big mess is sometimes made (if there was food in them), and big laugh is had by Laura and whoever saw her do it (this makes me wonder if she has my diabolical streak), then we clean up and try again.

Yesterday, at her snack time, she purposefully reached forward and pulled her snack to her mouth and began chewing. She was working on two different items. The first one is a little cloth like baggy that you put chucks of fruit in to. The purpose of this device is to teach children to chew. The theory is that the child bites down on the fruit filled bag and some of the juice from the fruit comes out. To me it sounds kind of weird, but it is actually kind of cool. Laura was able to pick her fruit baggy up several times, and get it to her mouth to chew on. She did this with little help and allot of encouragement from Tara. She even worked on transferring the bag from one hand to the other.

Laura also took a rice cracker from Tara's had and chewed on it. In the past, the closest Laura had gotten to something like this would involve her grabbing one of our hands that had some of her food in it, and she would then pull that hand to her and we would have to guide the food into her mouth. However, yesterday she took the cracker from Tara's hand and chewed on it several times. I am hoping to have a video of this posted on my FaceBook page later today.

Beyond the chewing, she is getting better at standing. And, she happily drinks her bottle through a straw. We are still sometime away from her drinking out of a cup, but we are getting closer. She can hold a cup or glass all by herself though. I know these may only seem like little things to some people, but to us they are huge, and we are very excited.

The Perpetual Motion Machine

Some of you have read the post where I speculated that Laura may in fact be an alien. I admit it is a interesting notion, and is certainly funny when you really think about it.

Another acurate description would be to say she is a perpetual motion machine. Unless she is being hled she is constantly on the go. Yes, I know she does not crawl yet. However, when she is laying down (on her back, side or stomach, it makes no difference), or when we are trying to get her to sit up, she is constantly moving. Even whe she is asleep, she has some place to go. She stayed home with me on my day off last week, and she wore me out. I think Tara and I are going to have to put a bell on her when she starts crawling.

Now, when you combine that constant energy with what appears to be an unquenchable curiosuty, I think we are toast. When she is awake, her head is on a swivle. She is constatly turning it. She tries to study anything and everything. She wants to be apart of everything. It really is kind of cool to see.

It is funny how our life mimicks Laura. Starting yesterday was the start of a very busy 8 days. Laura's Granny had a party to intorduce Laura to all of Granny's friends yesterday. Natually Laura was a big hit, and soaked up the constant attention. She was happily passed from one lady to the next, and she loved every minute of it. The party started at 2:00 pm and we did not get home until nearlly 8:00 pm. Laura got some really cool new stuff at the party as well. So to all of you who brought gifts, Thank you.

Of course Tara and I are both working this week. At R.E.I. we have a group of new hires I get to train later this week. That means a little more to do at home during the week. Saturday is the Down Syndrome Association of Houston Buddy Walk (go to www.dsah.org to sign up or donate). Our team, Laura's Lions, has around fourty walkers signed up, and they are coiming in from all over to be apart of the action. Then Sunday Laura has her Bible Presentation at Second Baptist Church Houston at the 9:30 service at the Woodway campus. It is looking like there will be a big turn out for that as well.

So our life this week will feel like it is non stop. We will be in perpetual motion. We do have a few pictures from yesterday, that I will try to post later this week. I will also try to post the Picture we have of Laura in her tutu. It was her costume for Halloween. She was very cute.

Joys and frustrations

Well it has been an interesting week, to say the least. I am going to deal with the frustrations first, so I can work them out of my system.

Some of you know that we have applied for medicaid for Laura. Medicaid, of course, is a government run health care program for low income families. To qualify you cannot make more than a certain amount of money depending on how big your house hold is. We did not qualify. We did not expect to. That is fine. Let those who need this program take advantage of it.

A similar program, that is supposed to provide assistance for those who can not work is run through Social Security. For those of us who work, yes the same government institution that feels the need to take a portion of everyone of our pay checks. The program is called SSI Disability. You may have seen lawyers talking about it on television. The goal of this program, is to provide health care to those who cannot work due to some disability. To qualify for it, you have to first qualify for Social Security Supplemental Income. Now, how do you know if you qualify for the supplemental income you ask? Simple, they use the exact same guidelines as Medicaid.

Can you say "from the Department of Redundancy Department"? Two separate programs that are supposed to be aimed at two very different groups, yet they use the exact same guide lines. So if you are in a lower income tax bracket, or are an illegal immigrant, you can help yourself to as much government funding as you need. For those who want to curtail and rein in wasteful programs, here are two different yet the same programs for you to start with. Here is the bottom line, if either Tara or I quit our jobs, or we have more kids, Laura will qualify for these programs. Someone explain to me how this makes any kind of sense please.

Ok, that is the frustration side of things. Now for the fun stuff.

Laura had her regular therapy session this week. Leigh, Laura's therapist, continues to be impressed with how Laura is doing. Laura's muscle tone continues to look good. Low muscle tone is a common problem in children with Down Syndrome. Low muscle tone can lead to problems like slow development of speech patterns, delays in crawling and walking, and other further reaching issues. Laura however, works out rigorously several times a day, and so does not appear to have low muscle tone issues.

She currently is capable of holding herself on her side. That means we can place her on her side and she will stay there on her own, with no assistance from us. She has rolled on to her side several times in the last few weeks, and earlier this week she rolled from her side to her stomach all by herself. We are very excited.

Speaking of speech patterns, Laura is a little chatter box. If you are close to her and have captured her attention (the child is fascinated with light sources, it is the weirdest thing) she will coo, and grunt and moan at you for as long as you will pay attention to her. Her smile is a constant source of joy around our family. All of this is continued proof that physical therapy does work.

This week we went and toured the Arbor School here in Houston. The Arbor School is a private school that accepts and works with all kinds of children with all kinds of challenges. We were impressed with their setup and their future plans. Over all a very nice program. That being said, if we are given a choice between The Arbor School and The Rise School we would likely choose The Ris School. Mainly because the Rise School caters to Children with Down Syndrome. However, both are great programs.

The final bit is an update on the Down Syndrome Association of Houston Buddy Walk for 2009. Laura's team is set up. It is called Laura's Lions. It is Captained by Judy Johnson, Laura's Grammy. To date we have 30 walkers signed up and have raised almost $1,000.00 dollars. There is still plenty of time to sign up.

PLEASE go to www.dsah.org web site and select the Buddy Walk link on the left side of your screen. From there, to get to Laura’s page click on the Buddy Walk Link now in the middle of your screen. Then, on the find a team option please type Laura’s Lions under team name. From Laura's page you can click on the Home button to read more about the Buddy Walk program and details of the days events. From here you can either sign up to walk (a $10.00 per person fee) with us on November 14th, you can choose to donate or you can do both.

We hope you decide to participate in this year's Houston Buddy Walk by either registering as a walker for our Team, "Laura's Lions", or by donating to our cause. We are looking forward to adding more lions to Laura's pride!!

Laura's Lions

As many of you know my daughter, who has Down Syndrome, Laura Allison Schaefer had open heart surgery before she was three months old. The surgery was a complete success, and she is doing great.

The Lion in the picture below is her favorite stuffed animal. It was the first toy she really responded too. It was a great source of comfort to us while she was in surgery. We felt like it is a great representation of the way Christ watches over all of his people. Plus, it is an amazing reminder of just how many people were preying for Laura through that part of her young life. It helped to keep us all sane while she was in the operating room, and out of our care.


Now the Down Syndrome Association of Houston (dash for short) could use your help. They are having a Buddy walk on November 14th. Please check the link to the dash web site the right for more details. If you would like to participate on our team, Laura's Lions, I need to know no later than Thursday the 15th of October. This is so we can get you registered as a member of our team.



If you would like to donate your financial support please let me know. Funds that are raised will go to support Down Syndrome research

Our Team Captain is Laura's Grammy (Judy Johnson). However, all of Laura's grandparents and parents will be trying to get people to join our team. So the more the merrier. If you are available on November 14th come take a stroll with Laura, because each of you are already one of her Lions, we would love to have along.

Getting back to a routine.

Well, we have been home for about a week now. In some ways it seems longer. In some ways it seems like only a few days. Laura is doing great. She either sleeps, or demands to be the center of attention.

As I have said in a previous post, this is new territory for Tara and I. Neither one of us wants the spot light. But all is good.

I am still amazed at how much more active she is than before the surgery. Everyday, she is awake a little longer than the day before. Everyday she fight sleep a little harder. This is going to make the coming years very interesting to say the least.

We had our first visit with Laura's E.C.I. therapist this morning. Liegh was very impressed with Laura's suck. This is big news, because as most of you know for almost a month before Laura's heart surgery she was feeding mostly through her NG tube. She just tired out so quickly when she would try to bottle feed. Tara and I kept doing Laura on her exercises as best we could once she was on the NG tube completely. We are hoping it will pay off soon.

Our plan, and Leigh agrees, is to start slow. We are continuing Laura's exercises from before her surgery. We are also putting a little of her food in just the nipple (not giving her a bottle yet) and letting her get used to that. The down side to exclusive NG Tube feeding is that Laura (and most others who have to be tube fed) develop a food aversion. That means they either do not like the taste of food of the feel of it in their mouths. Another weird idea to me, as I believe eating is a very good thing. On top of the food aversion, we are trying to get Laura past a bad gag reflex as well. So these are our current challenges.

Some of you may have noticed there is a new web site in the list. The Oley Foundation is a nonprofit that tries to provide support for families who have a member that must be tube fed. I checked out their web site, and they have some good information out there.

So we are home. We are feeding every three hours. She is more active and more motivated. She tracks with eyes much better. When she focuses on you she actively tries to interact with you. She makes sounds, smiles (all the time now) and just seems to be enjoying life. Tara and I are very happy that she is doing so well. We thank God daily.

Finally, Welcome Nathanael Miller to the world. Congratulations to Rachel, Matt, Gabriel and Jonathan on finally getting to bring the newest addition to the family home.

The latest info

Yesterday, Laura had a check up with her Cardiologist after being home only 4 days

I could not think of a better way to present this information than how my wife, Tara, put it in an email earlier today. That is right, I am blatantly stealing from my wife.

"I cannot express how deeply thankful Marcus and I are to each of you for your prayers for Laura. We truly believe in the power of prayer.

Laura is doing very well. She had a great checkup yesterday with the cardiologist. Her lungs are still a little wet, but not congested. The medication will continue to improve this. She weighs 13lbs. and is 22.5” long, and is such a wiggle worm! She is definitely going to keep us on our toes.

Laura still needs the feeding tube, while she works on bottle feeding. This is a slow process, because she has a very sensitive gag reflex. Please pray that we will be successful with this."

In addition to the above information, Laura also had her stitches out yesterday. She did not enjoy this process. However, she did calm down once they were out.

Laura is much more active now. This is both fun and challenging. Challenging because we find our selves ducking and dodging legs and feet during diaper changes. Nothing like getting kicked while trying to change your daughter.

She smiles constantly, which just melts our hearts. The bottom line is that she is just to cool for words.

The Bionic Child . . .

"Trust in the Lord with all of your heart and lean not on your own understanding
In all of your ways acknowledge Him and He shall direct your path"

Proverbs 3; 6 - 6

Ever since Laura's surgery was first described to us, I have pictured Steve Austin the Bionic man. I have repeatedly heard the narrator's commentary during the open sequence. He would generally say something like "We can rebuild him. We can make him faster, and stronger. We have the technology."

After seeing Laura yesterday with all of the tubes in her, that thought has been nothing but more prevalent. However, today they started removing those tubes. She still has many of them, but having two or three less makes it seem like she is almost back to normal. She still has many tubes in her (mostly to drain fluids that the body might excrete as a result of her surgery), but they continue to come out. The doctors think that they might transfer Laura from the C.V.I.C.U. tomorrow to the normal recovery floor.

What is really cool, is that she is already moving and squirming and wiggling like she was before the surgery. She actually started yesterday evening. The doctors are very impressed and proud of how quickly she is bouncing back. All I can say to this is, God is awesome.

Tara and I are very excited about this. You see we were worried that because of some unknown factor (bad reaction to a drug, defective bypass) that she might suffer brain damage, or some other set back, that would change her very sweet but inquisitive personality. That does not seem to be the case. Laura is responding to our voices and is trying to interact with her immediate environment. For those of you that have met Laura, you know that means that it will not be long before she figures out how to pull some of those tubes out herself. She is even making her normal noises. Her voice sounds a little horse, but that is not unexpected.

She once again has an N.G. tube for feeding. However, this will not be a permanent thing. We are anxious to be able to start bottle feeding her, so we can get rid of that thing. The C.V.I.C.U. doctors have taken her off of Morphine and put her on a different pain medication. It is not as strong as morphine, but it will be as tough on her stomach. They have also restarted her on the heart medications she was on before her surgery. They want to keep her lungs dry, and decrease her blood pressure so her heart will not have to work as hard. They have also started her on a kidney medication, to help her body naturally drain any excess fluids.

Overall, things continue to progress at a very good pace. I am hoping we will be able to bring Laura home Monday afternoon or evening.

Houston we have success . . .

"Trust in the Lord with all of your heart and lean not on your own understanding
In all of your ways acknowledge Him and He shall direct your path"

Proverbs 3; 6 - 6


Anybody who has known me for very long, knows that Houston Texas is not one of my favorite places. It is far to humid here. The only elevation change is some minor stuff that fluctuates between 50 feet below sea level, to 50 feet above sea level. For those that do not know the history of this town, it is built on a swamp that was converted to rice fields, then into what would become the 4th largest city in the United States of America.

Today, Houston is my favorite place in the whole wide world and all of Gods creation. One of Houston's greatest assets is the Houston Medical Center. Many of the hospitals there are ranked among the world leaders in their various specialties. When walking through any one of the hospitals, it is not uncommon to hear as many as 20 different languages and seemingly innumerable different dialects. People come from all over the world, to be treated at the various hospitals that make up the Houston Medical Center. Doctor's all over the world clamor for the opportunity to be considered for a position at one of these hospitals.

Texas Children's Hospital is among these elite organizations. They are consistently ranked among the best Childrens Hospitals in the world. We have already seen the dedication to caring and excellence once this year, when Laura was first born. Today, we it in action yet again.

At 7:00 am the surgical nurse came to get Laura for her open heart surgery, that was described in a previous post. At 8:00 am we said good bye to her, so that she could be prepped for surgery. We met with the anesthesiologist, surgeon and her cardiologist before her preparation began. 8:00 am began what can only be described as the most agonizingly long day ever.

At about 10:30 am the charge nurse came out, and told us that Laura was doing great and gave us an update on the surgery. She would do this every two hours up to about 3:00 or 3:30 pm. After that time, it would be up to either the surgical nurse or the surgeon himself to give us updates. Each update was like a little nugget of hope, sunshine, gold and dark chocolate all rolled into one. Unfortunately, it also meant another 2 hours before the next update.

At 4:30 pm we were told that Dr. Morales (the surgeon) would want to meet with us. We met about 4:50 or so. He told us that the operation went beautifully and that Laura was doing fine. She would be heading up to the I.C.U., and after that we would be able to see her. We finally got in to see her at about 6:00 pm. I had been preparing myself for a sight that would have covered her entire body in wires and tubes. I had convinced myself that only a little face and hands to be seen. When we saw her it was not nearly as bad as I thought (I kept flashing to Obi-Wan's description of Vader being more machine than man). However, it was still a little disturbing to see all of those wires and tubes running in and out of her. But none the less, there she was. Out like a light. Beautiful.

There were many tears this evening. Some from everyone who was there, and I am sure many more from those who were not. Thank you all for your prayers, kind words of encouragement, gifts, thoughts and support. It has meant the world to Tara, myself and Laura's grandparents. We will never be able to express how much each of you have meant to us during this ordeal. Thank you.

Some of you are probably wondering what is next. This is how I understand it. Each of those wires and tubes is hooked up to something that is helping Laura function. Over the next 24 hours they will begin to scale down that support for her (as she can tolerate it) with the goal being to have Laura functioning on her own. After that, she will remain in the I.C.U. for another day or two for observation. From there, they will send her to the recovery ward (if that is what you still want to call it) where Tara and I, and Laura's grandparents will learn how to care for a 12 week old who has just had open heart surgery. Ideally, she will only be there for a few days. After that she gets to come home. For three to five more weeks she will be pretty much isolated at home (not counting doctor's appointments) until she is properly healed and her immune system is strengthened. Then, with her cardiologist permission, it is back to life as normal.

Today I love this town, and there is no place I would rather be.

Folks, I am telling you prayer works. Laura is living proof of that simple statement. Again, thank you all.

Ladies & Gentlemen start your waiting

"trust in the Lord with all ofyoir heart and lean not on your own understanding in all of your ways acknowledge Him and He shall direct your path"

Proverbs 3; 6 - 6

Well it is 9:30 pm on Tuesday September 8th. We have been at TCH since 7:30 am. Wehave been in our room since about 2:00 pm. Needless to say we are exhausted. Laura has come through it all like a champ. I wish I had her stamina, strength and ability to sleep at less than a moments notice.

She has had a trying day today. She went through the normal weight (over 12 pounds), length (over 22 inches) and pulse when we checked in. She also had her blood oxygen level checked. This not unusual for her. We then had to have blood drawn. This was not fun, to say the least. It took three nurses and over an hour to draw the needed blood. Laura was not a happy camper. The rest of the testing went well. X-Ray, EKG, more blood oxygen levels all went smoothly. We even got to have lunch.

At about 2:00 pm we were admitted to the hospital. We are first up for surgery tomorrow at 8:00 am. They will come and get her to prep her for the surgery at 7:00 am. This means another early day tomorrow (we were up at 5:30 am today). I am not looking forward to that time.

Please keep praying for Laura, her various medical teams and her family. We all need it.

Good night.

Unto the breech we charge

It is all in God's hands.
It is all in God's hands.
It is all in God's hands.

As we get closer and closer to Laura's surgery date (which is Wednesday September 9th), I find myself repeating this more and more. Several days ago I was fine with everything that is going to happen. As we get closer and closer I become less sure that I can handle this.

For anyone who does not know, Laura is having open heart surgery. She has what the doctors have called a Balanced A/V Canal defect in her heart. What this means is that in her heart, the wall that seperates the two atriums did not fully form. Neither did the wall the sepreates her two ventricles. As a result of this situation, Laura only has one valve in her heart instead of two. This means that she has increased blood flow to her lungs (which causes fluid to build up on them), and decreased blood flow to her body. This is because the body is a high pressure system and the lungs are a low pressure system. Blood being a liquid, will always take the path of least resistance. Fortunately, this is repairable with surgery.

So here is the scenario. Tomorrow morning (Tuesday September 8th) we will arrive at Texas Childrens Hospital at an unreasably aerly time of between 7:30 am and 8:00 am to begin her final check and screen. The Marcus is not happy about this early start. He may have to hold his breath and stomp his feeet tomorrow. After all the tests are completed we will get to wait (and hopefully eat lunch). After the waiting is over we will meet with the doctor and go over the test results. If everything looks good Laura will be admitted to the hospital tomorrow afternoon or evening. She will no longer be allowed to feed after midnight, but she will be hooked up to an IV. Wednesday she will have her surgery. All we know about when the surgery is, is that surgeries generally start at 8:00 am. That does not help as many people ask us what time her surgery is and all we can do is shrug and tell them after 8:00 am.

The surgery will go like this. The surgoen will make an incision along her breast bone. Then he will sperate the sternum (breast bone). Next he will cut the skin like material that is under the breast bone. This will expose her heart and lungs.

At this point the surgoen will hook Laura up to a heart and lung machine. After that he will stop her herat and lungs. From there he will open Laura's heart and get his first true good look at what he has to work with. X-ray's and echo's and the like are great for getting an idea of what is going on, but they really only reveal shadows. Once the surgoen opens her up he will make his final decision on what to do next.

Our preferred soluthion is that he repair the defect. However, if he feels that there is not yet enough material in the existing valve to build two valves we will opt to place a band on the vein that flows from Laura's heart to her lungs. This will have the effect of creating a high pressure system that blood has to flow through to get to the lungs. This will also increase her blood flow to her body. He will then close up her heart, resart the her heart and lungs and take her off of the heart and lung machine. From there he will close the incision in the skin like material, close her sternum and finally close up her skin. This is a stop gap messure. If this route is taken then Laura will still have to have the surgery to fix her heart in the future.

So how is the surgery going to work (if it can be done)? If the surgoen decides that there is enouigh material to build two valves from one, then that is where he will begin. After he builds the valves he will repair the the two walls. He will do this by taking some of the skin like material under her rib cage and using it to complete the walls. He will then close up her heart, restart her heart and lungs and take her off of the heart and lung machine. Fromt there, he will close the inciesion in the skin like material, close her sturenum and finally close up her skin. If all of this is able to be done, then she will be fine. There will be regular checkups with her cardiologist, but there should be no further need for surgery.

As good as the team at Texas Children's is, there are risks. Laura could get bumped for an emergency case. That means we would have to reschedule everything and go through all of this aghain at a later date. Not a possibility that I am happy about. Laura could be bumped even after she is sedated and into the operating room (as long as no incisions have been made).

Laura could die. This is open herat surgery on a child that is less than three months old. Things are small. There are any number of things that could go wrong.

There could be a problem with the heart and lung machine, that could result in permanent brain damage. These are scary to contimplate, but they are very real riskes.

For those who have been wondering why there have not been any updates the last few weeks, that is my fault. Some how it seemed like if I wrote about it, Laura's surgery would some how become more real, and that our worst fears might be realized. Feelings similar to what we went through back in March, are statring to become more common. So please pray for Dr. Morales (the surgoen) and his team, the staff at Texas Childrens Hostpital, Laura and her family, and anyone else who is going to be involved in all of this. We could all really use it.

Thank you.

Updates and surgery

"... The Lord is my rock and my fortress and my deliverer;
My God, my rock, in whom I take refuge,
My shield and the horn of my salvation, my stronghold and my refuge;
My savior, You save me from violence.
I call upon the Lord, who is worthy to be praised ..."

2 Samuel 22: 2-4

Well it is about 10:30 pm on Tuesday August 18. It has been an interesting day. Actually it started yesterday. Tara and Laura went in for a follow up appointment. Dr. Macicek upped Laura's medications, and her food intake. He upped her food intake because he did not want Laura to plateau in her growth and weight gain before her surgery. He upped her medications because of how she is breathing.

The breathing issue brings us to the test results from from last week. Although everything looked fine, they did see some fluid on Laura's lungs. Dr. Maccicek is hoping that by upping Laura's medication we can get a grasp on the fluids on her lungs if he can. The other purpose of all of the tests that they ran on Laura, last week, was to establish a base line for her. This will be important when the doctors do a pre-op. exam and screen. Dr. Macicek did say that Laura's breathing is more shallow and rapid, but that she still seems to be getting plenty of air. He also said her heart is beating a little faster, but for now she appears to be able to handle it ok. So overall, a good report.

What a difference a day makes. This morning about 9:00 am we received a phone call from Texas Children's Hospital. They have scheduled us to have a consultation visit with Dr. Morales to discuss Laura's open heart surgery. This will be Tuesday September 1, 2009 at 2:00 pm. At this point we will discuss the procedure in some detail. We have been warned that this will likely scare us.

Then, on September 8 (a week later) we will go back to TCH for the pre-op exam and screen. This is done to make sure Laura is not sick and is healthy enough to have the surgery. Then we will be told to go to lunch. After lunch, we will meet back up with the doctors to discuss the results of the exam and screen. If everything looks good, Laura will be admitted that afternoon to Texas Children's Hospital. Currently, it is expected that Laura will have her surgery on Wednesday September 9, 2009. I do not know how long she will be in the hospital. It is expected that she will be unable to go anywhere other than home and doctors appointments for eight weeks after her surgery.

To have Laura's surgery upon us already threw me this morning. I called Tara at work, and let her know. I spent most of the day in one state of being scared or another. Yes we knew it was coming, but it is still terrifying to me to know that my 2 month old daughter is going to have open heart surgery before she is 3 months old. That just cannot be right. To have it put right there in front of you, that there is nothing you can do to help your child except hope and pray that everything goes well is not easy to deal with. I found myself praying off and on all day. I still have not settled down completely. Tara is doing better than I am. Laura seems fine with it as long as she gets held, fed and changed.

So that is the latest. We need all of your prayers. Please pray that Laura remains healthy and strong as we all go through this process the next few months. Please pray for the surgical team, that they do great work, that there are no complications and that God continues to bless them with great talent. Please pray for the post-op team that will watch over Laura after the surgery, that they take great care of our angel. Lastly, please pray for Laura’s parents and grandparents. We all knew this was coming. But now it is here, and in our own ways we are having a hard time with it. We are scared, we are excited to get the surgery done and begin to move to life after surgery, we are all experiencing many other emotions in our own way. The bottom line is, we need you all.

This next bit is for any and all REI employees that read this blog. You may or may not have known that while REI honors the Family Medical Leave Act, for hourly employees (such as myself) it is unpaid leave. I am anticipating being on leave under the FMLA for at least 4 weeks starting Monday September 7. As I used up almost all of my vacation and sick time after Laura's birth, this means I will be unpaid during my leave. I am asking that if any REI employees have any sick or vacation time they would not mind donating I could sure use them. If you are interested in donating some time please contact Deena Kreitz, Nick Curtis, Paul Houston or Michael McCoy at the Houston Galleria store (store # 55) and let them know. I am sure they will need your employee number. Thank you for your help.

Stage 2 is now complete. The stage in review

"But let all who take refuge in You be glad,
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."

Psalm 5: 11


Well it is Saturday and we have survived stage two of the crucible. Tara and I are tired. Laura is still going strong.

If my grammar and word choice is off, I apologize now. It is 7:30 am, and as most of you know, I am not exactly a morning person. In the mornings I am not very pleasant. I am liable to growl at you just for having the nerve to be in the same zip code as I am. On top of that, the brain does not work very well for the first couple of hours after I wake up. It feels fuzzy and sluggish. No, eating something with protein does not help. Sometimes a shower does, but not all the time. As an example, after getting Laura's bottle ready this morning I decided I needed a glass of water for myself. So I went in to the kitchen to get it. I looked around and could not find my glass. I looked for it in our living room and our bed room. Nothing. So fearing the worst (it had disappeared in to some alternate dimension that my SciFi loving brain had cooked up) I asked Tara if the dishes in the dish washer were clean or dirty. She said they were dirty, and then reminded me that I had emptied the clean dishes a couple of days ago. All I could think of is how rude she was to speak.

Yup being a non morning person is great. I am just glad that Tara is not much of a morning person, and that Laura appears to be following our lead. It makes things a little easier since we are all on the same page when we get up. That being, who ever invented the idea that we had to rise with the sun should be taken out beaten, drawn and quarted, tarred and feathers, have bamboo stacks shoved under their finger nails, sit and listen to someone drag finger nails across a chalk board and then shot. And that would be the first stage of punishment.

I really do not like the mornings or morning people. When I was growing up my dad would wake me up on a Saturday and tell me day light was a wasting and that I needed to brush my teeth and then come down and eat breakfast. A grumbling, grouchy teenager who just wanted to sleep was beyond his comprehension. Took make matters worse, if my grandparents were in town, I was not even afforded the ability to sleep to 9:00 am. Paw-paw (my grandfather) would get me up at 6:00 am to help him with some project around the house. It was incomprehensible to him that I would want to sleep past that time. If I did not get up he would make my life miserable until I did get up. My father apparently enjoyed this, as he would sleep until 8:00 am, then put on his bathrobe, get a cup of coffee and come smiling to see what we were doing. His smug expression really pissed me off. He really enjoyed it (he is probably reading this and smiling).

Let see, this was the week of doctors and birthdays. The doctor visits all went well. Dr. Pielop, our pediatrician, is very pleased with where Laura is and how she is progressing. He also gave Laura her two month shots. She seemed handle them with out to much trouble. She cried a little, but the rest of the day she seemed fine.

Our cardiologist, Dr. Macicek, started Laura on a new medication that is in addition to the Lasiks. This medication will help lower Laura's blood pressure, so her heart does not have to work as hard to push blood through her system. This new medication, called Captopril, is the second in the cascade of medications that she will be on before her heart surgery. Laura gets both the Lasiks and Captopril every 8 hours.

Dr. Macicek has said that Laura will likely have her heart surgery in September. This is not written in stone, but he wants to get Laura onto the surgeons radar. this was not surprise to Tara and I since Laura's breathing has changed in our opinions. She also seems to start labor more quickly when she feeding or we are working with her.

Tara started back to work Thursday. She said it was very hard for her. We are lucky that Second Baptist has a day care program for their employees. However, not everyone get is. There are a limited number of spots for each class. A new class is formed each year for the newborns, and that is it. We got the last spot for this years class. Laura's class is down the hall from where Tara works, and is in the same building. This is great, because Tara and Laura are so close together. We are very lucky to have access to such a program

Tara has said it is hard for her to leave Laura's room and go to work. She would rather stay with Laura. I cannot blame her for that. I found that I was very bothered Thursday by the fact that all of my girls were not home (our dachshund Jenna obviously opted to stay home). I have met and trust the folks up at Second that are taking care of Laura. They do a great job. They are very sweet and loving. They are excited to learn how to care for Laura with her special issues. It just sucks that Laura and Tara are not home. Something about them being here, even when I am at work is reassuring to me. So Thursday I had a hard time as well.

Tara has loved getting to show Laura off. Who can blame Tara. Laura is beautiful. From Tara's descriptions, I would say Laura is the most popular person at Second for now. This is as it should be.

Thursday was Laura's Grammy's (Tara's mother) birthday. We took Grammy to a restaurant that we all like. Laura had a good time. She got to eat with us (more or less) through her feeding tube. I spent about 20 minutes with my hand in the air holding the tube up so that gravity could do its job. I felt like should be in a class room trying to ask the teacher a question. We all (there were 5 of us) spent most of the time sitting and staring at Laura. I cannot figure out why?

Tara, Laura and I went to see The Ugly Truth. This was a truly funny movie. I would caution that there is allot of fowl language and blatant discussions of sex, but a fun movie for a married couple to go see on a date night.

We are now on the down hill trek of the crucible. For the remainder of August, the birthdays are more spread out. There are also fewer doctors appointments. We are hoping to get a little better routine established by the end of the month.

A new of medication

"But let all who take refuge in You be glad,
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."

Psalm 5: 11

Well as stated in my previous post, we had an appointment to see Laura's Cardiologist today. Overall, it went as we were expecting.

They did an x-ray, an E.K.G. and an Eco cardiogram. We should get these results sometime next week. The purpose of them was to establish a base line for Laura.

We also added a new medication. This one is called Captopril. It will continue to help with Laura's breathing and fluid build up on her lungs. It will be administered every 8 hours. We are also moving the Lasiks up to once every 8 hours.

Tara asked about Laura's weight gain. Dr. Maciek said that the slow down maybe caused by Laura starting to burn more calories. This result is not unexpected, and is why we were going with a richer formula at her feedings in addition to breast milk.

This has caused Dr. Maciek to want to see Laura next Monday for a follow up. He wants to see how she is doing on the new medication.

All of this caused Dr. Maciek to call in the attending doctor at Texas Children's Hospital (this is common). It is their opinion that Laura's Heart surgery will likely be in September. They felt that she is progressing faster than they thought she would. Again this is not a surprise or unexpected. Tara and I have been wondering if Laura was moving along quickly. So, while we would have chosen not to have to go through this at all, we are glad it looks like the surgery will happen sooner rather than later.

We are hoping to have more information after the follow up on Monday.

Enter the Crucible . . .

"Trust in the Lord with all your heart
And do not lean on your own understanding.
In all your ways acknowledge Him,
And He will make your paths straight."

Proverbs 3: 5-6


Well it is August. There are two months out of the year that scare me to death. March and August. You see over 90% of our family have birthdays in these two months. They bother me more that Christmas. Since we are in August, I will only cover this months birthdays.

Moving from the beginning to the end, we start with my mother's Birthday on the 5th. Then mine on the 7th (thank you for the happy birthday comment, I swear I heard it). On the 13th is my mother-in-laws. On August 23rd is both my father and my step-niece. On the 26th is my cousin Cohen (it will be his first birthday). Add to this a cousin and an old friend who have birthdays on the 1st. Another old friend of Tara's on the 5th (yes the same day as my mother). Yet another old friend of mine who has a birthday on the 6th (she is exactly 365 days younger than I am). And finally, another old friend of Tara's is on the 27th (she and her husband just had their first child a couple of weeks before Laura). Yes, I am well aware that I have forgotten some people. For those of you I did not mention, please accept my apologies, and post your birthday in the blog comments section. All of this is just off of the top of my head.

Now add in the following events. First we have 3 E.C.I. appointments this month (one was today and went very well). Today we had to take Laura to have an ultra sound on her hips. Because she was breech there is a chance that she could have hip dysplasia (kind of makes it sound like Laura is an elderly dog). This is compounded by the fact that Down's kids sometimes have hip dysplasia as well. We will get those results next week. Tomorrow my aunt and cousin come into town to celebrate my mother's and my birthday with us for the weekend. This will be the first time they will get to see Laura since she made her break for the real world. I have warned her that she will have many pictures taken of her. Unlike her mommy and daddy she likes to be the center of attention, so hopefully it will go well. I am thinking of instituting a rule for the weekend that says if you are holding Laura when she messes her diaper, then you have been chosen to change her.

Monday, Tara has a routine Doctor's appointment. Tuesday, Laura has a two month check up and shots with Dr. Pielop. Wednesday, Laura has a cardiologist appointment. Thursday, Tara goes back to work, and E.C.I. will check in on Laura.

I will be so glad when September gets here. Maybe we will be able to get some rest. I am looking forward to tomorrow. Wait it is after midnight here, so it is my birthday. That means I am looking forward to today. Is it me, or does that sound a little weird. We are going to go see G.I. Joe. I expect it to be cheesy, but Rey Park is in it as Snake Eyes so I have hope. If anyone is trying to figure out where they know his name, he played Darth Maul in Star Wars: Phantom Menace. I still think that they should not have killed off Maul until Anikin could do it in Star Wars: Revenge of the Sith. That battle would have been awesome. If any of you Star Wars junkies out their want to know what I would have done with the prequels to include his character let me know, and I will post it here. He also played Toad in the first X-Men movie. He is also a multi time Martial Arts World Champion.

Over all Laura is doing well. She is approaching ten pounds. She is just getting bigger and bigger. I told my step-mother the other day that one morning not to long ago I swear she grew over night. That is impressive since we get her up to feed her at least three times between 11 pm and 8 am everyday. Our E.C.I. therapist is concerned that Laura is laboring in her breathing and asked us to speak to our cardiologist about it. She is already on Lasiks, and I suspect that the doctors will up her medication. Otherwise she is doing very well.

Laura has had a big week already and the month is just getting started. I am hoping to be able to post again Sunday and let everyone know how we are surviving.

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.

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.