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.

Rain Rain everywhere

Well, for the better part of the last 4 weeks we have been getting rained on here in Houston. It seems like forever since I have seen two days go by without any rain. It really sucks. But, that is the price of living in a city that used to be a swamp.

The good news, it did not rain on the Fourth of July or fathers day. That means Laura got to go swimming both days. Now the fourth of July swimming was really cold. It had been raining for three weeks at that point. But she still splashed and floated around quiet happily for a couple of hours.

But still, I am starting to feel like we are all walking around in a permanent pruney state from all of the water. The rain sure beats the heat and humidity that we normally get.

Through all of it, Laura is just as happy as she always is. As long as someone plays with her is paying attention to her, she does not care what is going on with the rest of the world.

That is not entirely true. Laura has a new teacher at school. She does not know the teacher yet so she gets clingy and cries when mommy drops her off each morning. We know this is just a stage she is going through, but it is still tough to walk away from our crying daughter.

We meet with the lady that will be Laura's new teacher at The Rise School next week. The meeting should be about an hour. I think it is mostly to discuss where Laura is currently at, and what we would like for her to accomplish in the next year.

We are having a hard time with this. We know The Rise School is the best place for Laura, but she will not be right down the hall from Tara anymore. We cannot just pop in and see her when we want to. This is going to be rough. But, this is what is best for Laura. And that is what we want. I am not looking forward to this.

Overall, Laura's therapist's think she is doing well. She is still not crawling, but at this point it is by her choice. She can easily hold herself up on all fours and rock (she is really quite good at it). She is getting to the point where she can stand without you having to be ready to catch her. She can hold herself up. Her therapists do want her to crawl before she walks. I am not sure if Laura agrees with this. Time will tell.

The Down Syndrome Association of Houston (http://www.dsah.org/) has scheduled their Buddy Walk for this year. It will be Saturday November 6th at Jones plaza. Laura will once again have a team. Her team is Laura's Lions. The walk is free for anyone and everyone who wants to come out, just register first so there is a record of who came out. We look forward to seeing you there. Here is hoping we can raise a ton of money for at free event.

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.

Things are becoming . . . Normal?

That's right folks, after only 4 months of capture and domination by this completely alien thing in our lives, and we are starting to see some normalcy again. Of course I am reasonably sure Laura is not an actual alien, but what better description for a semi gelatinous mass that squirms, wiggles (around our house we have combined the two words to form a new more powerful word squiggle), makes weird noises (which she will do for long periods of time, whether you are there to talk back to her or not) and completely dominates every aspect of our lives. She smiles almost constantly. Nothing like that big toothless grin to turn the day around. Perhaps further evidence that Laura might be an alien, she has unusual powers (as I just mentioned, her smile).

The girl is a mess. For a child that cannot move under her own power, she is all over the place. Tara and I live in constant fear of two things. First, that when she starts to crawl and walk we will never get any rest as she will be on the go. I had really better start getting into better shape. In truth this would be a great thing. She already shows incredible curiosity about her surroundings. We are very excited about reaching a time when she can explore them more thoroughly.

The second thing we live in fear of, is that Laura will be a constant talker. You know, the type of person that just never shuts up, no matter what you do or say to them to get them to leave you alone. As I said above, Laura is constantly making all kinds of noises, whether you are there or not. That is great. Tara and I encourage her constantly to be more vocal. But we are afraid that once she figures out how to form words, she will go from two and three words sentences to hours long dissertations on her stuffed animal in no time. God help us all. Actually, given her Down Syndrome I would be very proud of her if she were to make that leap.

Ok, now for the updates. By now Laura should be over 14.5 pounds. She had her 4 month check up and shots last week and she weighed 14 pounds 6 ounces. She is 24 inches long. This all means that she is above the 90% range for height and weight. That is great news. Everything I have described in the post so far continues to point to Laura's surgery being a complete success. We are incredibly grateful for that.

Other tidbits. We are down to 6 feeds a day. This means we have an 8 hour period at night where we can try to get some sleep. I hope we are able to further reduce her number of feeds in the not to distant future. Yes she sleeps very well through the night.

Laura has successfully rolled from her back to her belly all on her own. Tara and I were very excited to see this. Laura looked a little confused about how she had gotten that way, but once she got back onto her back again she tried to turn over again.

She is also starting to reach for things. Up until now, if she had something in her hand it was either placed there or she found it by accident. Now she pulls burp clothes off of shoulders to suck on them. She also reaches for toys that she can see in her stroller or carrier.

Most importantly, she is starting to figure out how to feed from her bottle. For over a month before her surgery she fed pretty much from an NG tube. She has fed primarily from the tube since her surgery. We work with her on almost every feed. She is constantly taking about 5 mL. But she usually has one feed a day where she will take more. This is a great thing.

So as you can see things are constantly changing around here. It is fun to see it all happening. I will try to get pictures up soon. We have some great ones.

Just a reminder, the Down Syndrome Association of Houston 2009 Buddy walk is November 14th at Jones plaza. There is still time to sign up to walk or donate to DSAH. To do either go to www.dsah.org. On the left side of your screen you will see the word Buddywalk. Click on it. Then in the middle of your screen you will see a link to the 2009 Buddywalk page. Click on that link. Then click on the link for Find Team. In the first blank field on the right side of your screen type Laura's Lions, and click the search button just below. Then click on the link to Laura's Lions team page. From there you can donate, sign up to walk or both. To all those who have already donated or signed up to walk, we cannot thank you enough.

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.

Stage 1 Complete, Stage 2 under way

"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, we are through the first week of August and Laura is going strong (wish I could say the same for her mom and dad). She had a busy weekend meeting her great aunt Joan (pronounced Joann), her cousin's Deborah and Sharron.

She did great. She was her sweet, charming, inquisitive self. Joan and Deborah both got to hold her for some time. They were a little reluctant at first, but Laura won them over quickly and easily. Friday night she was a little fussy, but she had been in her car seat most of the day. Let's face it, her car seat is not exactly her favorite place to be and I do not blame her. Saturday and Sunday were much better since she spent more time in people's arms than anywhere else. This made her much happier.

She did have a small adventure Sunday. As we were coming back from lunch, one of the tires on the car decided to throw its tread. We suspect is was from wheel rot. She slept through the entire ordeal. If anyone is wondering, yes all four tires have been replaced and everything is fine now.

She spent most of today asleep. Or perhaps a better description would be, she spent the day recovering. Tomorrow she has her two month check up and shots. We are not looking forward to the unhappy baby that is going to come from those shots. I am hoping she responds in a manner that is similar to how she handled her shots at the hospital. She cried for a moment, but once the needle was pulled out she calmed right down. Here is hoping.

Below are a couple of pictures from the weekend. The first one is Laura and her granny on her grannies birthday. In that picture, the framed picture to the right (granny's left) is of my grandmother (Laura's Granny's mother). The second is Laura and her aunt Joan.

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.

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.

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."