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.
Showing posts with label children. Show all posts
Showing posts with label children. Show all posts
Tuesday, May 25, 2010
Tuesday, May 18, 2010
Thoughts from the "other side"
I have been a little down lately. Sometimes my thoughts focus on some of the opportunities that Laura might miss out on, because she has Down Syndrome.
For instance, will she go to college? I know of several adults with Down Syndrome that have attended and graduated from various colleges and universities around the country. Recent national legislation has certainly made it a little easier for people with special needs of all ages to get a post secondary education. This legislation is a critical first step. Now public universities need to step up and use it.
But it does not answer the question, will Laura go to college? Tara and I certainly want her to. We are trying to plan for her, and any other children that we may have, to go to college. Do not read anything into that statement. To our knowledge, neither one of us is pregnant. Our parents, Laura's grandparents, certainly want Laura to go to college. But will she go? Will she be able to function at a level where college is a viable option for her? We are certainly trying to do everything we can to ensure she is equipped to go. But will she?
Will Laura get married? Will Tara and I stand in the bridal sweet watching as Laura and her friends finish getting ready? Will I be praying as I walk her down the aisle "Please God, do not let me trip and ruin Laura's moment?"
Will she get to have kids of her own to care for, and love, and be loved by?
Will she need someone to watch over her and care for her, her entire life? This is a question I struggle with daily.
All of this brings one question to my mind. How severe will Laura's Down Syndrome be? Yes there are various levels of Down Syndrome. The answer right now is, we do not know. And that is what is most maddening about all of this. I hate not knowing. It drives me crazy.
When my mind wonders down this road, this "other side", it makes me sad. I try not to go there very often. But, sometimes I just cannot seem to help it. And it is ok to go down this road sometimes. It is part of being a parent in general, and being a parent of a special needs child in particular. Every parent does it from time to time.
Those who say they never get down about their child's potentially very different future, are in denial about their state of mourning. Mourning the perceived loss of a child's future is normal. There is nothing wrong with someone who experiences a mourning like state for a time when they find out their child will have special needs.
I have met a few parents that are in such deep denial about their state, that they are actually angry that their children are not "normal". They are not angry with their children, but rather they are angry that their child will be different. This is a mentality that I do not understand.
Every person is a unique creation. Every individual is special, and different from every other individual. So why are some parents so upset that their child is different? Their child is different, just like every other child out there. I understand for some people, that it can be hard to accept that their child will not be "normal", whatever that means.
But in reality these kids, or people, are no different than anyone else. Just like everyone else, they do things at their own pace, and in their own time.
For instance, Laura. I wrote a week or two ago that she has shown little interest in learning to crawl. However, she is very interested in learning to stand. She has no interest in learning to drink from a sippy cup. But, if you put a glass in front of her, she cannot get to it fast enough to take a drink. Which if she is allowed to do so by herself, the glasses contents usually wind up all over everything (she is only 11 months old after all). Learning things in her own way, and in her own time.
The only trick is not to get stuck in this "other side". I try to focus on this amazing gift that God has bestowed upon Tara and I. Laura has already had an impact on so many people, and she is not even a year old. In truth, I cannot wait to discover what other wonders are in store for her as we move forward.
For instance, will she go to college? I know of several adults with Down Syndrome that have attended and graduated from various colleges and universities around the country. Recent national legislation has certainly made it a little easier for people with special needs of all ages to get a post secondary education. This legislation is a critical first step. Now public universities need to step up and use it.
But it does not answer the question, will Laura go to college? Tara and I certainly want her to. We are trying to plan for her, and any other children that we may have, to go to college. Do not read anything into that statement. To our knowledge, neither one of us is pregnant. Our parents, Laura's grandparents, certainly want Laura to go to college. But will she go? Will she be able to function at a level where college is a viable option for her? We are certainly trying to do everything we can to ensure she is equipped to go. But will she?
Will Laura get married? Will Tara and I stand in the bridal sweet watching as Laura and her friends finish getting ready? Will I be praying as I walk her down the aisle "Please God, do not let me trip and ruin Laura's moment?"
Will she get to have kids of her own to care for, and love, and be loved by?
Will she need someone to watch over her and care for her, her entire life? This is a question I struggle with daily.
All of this brings one question to my mind. How severe will Laura's Down Syndrome be? Yes there are various levels of Down Syndrome. The answer right now is, we do not know. And that is what is most maddening about all of this. I hate not knowing. It drives me crazy.
When my mind wonders down this road, this "other side", it makes me sad. I try not to go there very often. But, sometimes I just cannot seem to help it. And it is ok to go down this road sometimes. It is part of being a parent in general, and being a parent of a special needs child in particular. Every parent does it from time to time.
Those who say they never get down about their child's potentially very different future, are in denial about their state of mourning. Mourning the perceived loss of a child's future is normal. There is nothing wrong with someone who experiences a mourning like state for a time when they find out their child will have special needs.
I have met a few parents that are in such deep denial about their state, that they are actually angry that their children are not "normal". They are not angry with their children, but rather they are angry that their child will be different. This is a mentality that I do not understand.
Every person is a unique creation. Every individual is special, and different from every other individual. So why are some parents so upset that their child is different? Their child is different, just like every other child out there. I understand for some people, that it can be hard to accept that their child will not be "normal", whatever that means.
But in reality these kids, or people, are no different than anyone else. Just like everyone else, they do things at their own pace, and in their own time.
For instance, Laura. I wrote a week or two ago that she has shown little interest in learning to crawl. However, she is very interested in learning to stand. She has no interest in learning to drink from a sippy cup. But, if you put a glass in front of her, she cannot get to it fast enough to take a drink. Which if she is allowed to do so by herself, the glasses contents usually wind up all over everything (she is only 11 months old after all). Learning things in her own way, and in her own time.
The only trick is not to get stuck in this "other side". I try to focus on this amazing gift that God has bestowed upon Tara and I. Laura has already had an impact on so many people, and she is not even a year old. In truth, I cannot wait to discover what other wonders are in store for her as we move forward.
Monday, November 9, 2009
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.
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.
Friday, October 16, 2009
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!!
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!!
Sunday, October 11, 2009
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.
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.
Thursday, September 24, 2009
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.
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.
Tuesday, September 22, 2009
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.
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.
Thursday, September 10, 2009
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.
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.
Wednesday, September 9, 2009
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.
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.
Tuesday, September 8, 2009
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.
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.
Monday, September 7, 2009
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.
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.
Tuesday, August 18, 2009
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.
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.
Saturday, August 15, 2009
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.
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.
Wednesday, August 12, 2009
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.
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.
Thursday, August 6, 2009
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.
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.
Monday, July 20, 2009
"'For I know the plans that I have for you,' declares the Lord, 'plans for welfare and not for calamity to give you a future and a hope.'"
Jeremiah 29: 11
Today I aaw something that was incredibly beautiful. I saw a place where children with Down Syndrome are loved, cared for and taught. The Rise School has an amazing program.
All I could think of as I was looking into the faces for those sweet innocent children, was what a long hard road Laura has. It broke my heart as I realized that her road gets harder and harder every day.
I firmly believe in the the laws of physics. One of the corner stones of those laws are the laws of Thermo Dynamics. The second law states that the universe is in a constant state of entropy. That means that the universe is proceeding from order to disorder. Not surprisingly The Bible predicts the same thing.
In our day and time we can see this happening. For proof I offer a simple example. I have lived the overwhelming majority of my life in the west side of Houston Texas. It is an upper middle class area that is quite nice. 20 or 30 years ago in most neighborhoods in the afternoon you could see any number of kids of every age running around at any time of the year. It was no big deal. The kids were considered safe in those nieghborhoods. Now kids are enroled in after school programs, no matter what thier age (sports programs and club meetings in Junior High and high school are basically aimed at giving the kids something to do until mom or dad gets off of work). More and more kids are enroled in private schools, or are home schooled, because thier parents do not trust the public school systems to keep thier kids safe. And who can blame the parents. Just watch the news and you will see evidence of this.
And it will continue to get worse. Just read some of The Bible prophecies that have yet to be fulfilled, but are only indications that the end times are getting nearer. It is into this world my wife and I brought a child. We both love Laura dearly. She is the greatest thing that has ever happened to us. She is beautiful and more fun that I ever thought possible. She is perfect.
As we toured The Rise School, I could not keep these thoughts out of my head. If she gets in, she will be safe, protected, loved, taught and cared for in away that is designed for Down's kids. She has her family, and mommy and daddy's friends to also keep her safe and fill her world with love. But, someday someone will try to take advatage of her innocense. They will use her sweetness to hurt her some how. That chances continue to rise with each passing day. It is my fear that for everything we will give her, that she will not be able to protect herself from this preson (whoever they are). Tara and I both pray that this never happens. We are clinging to God's promise to protect her all of her life. Please pray for her safety, and for the saefty of the the innocent little ones out there the world over.
Jeremiah 29: 11
Today I aaw something that was incredibly beautiful. I saw a place where children with Down Syndrome are loved, cared for and taught. The Rise School has an amazing program.
All I could think of as I was looking into the faces for those sweet innocent children, was what a long hard road Laura has. It broke my heart as I realized that her road gets harder and harder every day.
I firmly believe in the the laws of physics. One of the corner stones of those laws are the laws of Thermo Dynamics. The second law states that the universe is in a constant state of entropy. That means that the universe is proceeding from order to disorder. Not surprisingly The Bible predicts the same thing.
In our day and time we can see this happening. For proof I offer a simple example. I have lived the overwhelming majority of my life in the west side of Houston Texas. It is an upper middle class area that is quite nice. 20 or 30 years ago in most neighborhoods in the afternoon you could see any number of kids of every age running around at any time of the year. It was no big deal. The kids were considered safe in those nieghborhoods. Now kids are enroled in after school programs, no matter what thier age (sports programs and club meetings in Junior High and high school are basically aimed at giving the kids something to do until mom or dad gets off of work). More and more kids are enroled in private schools, or are home schooled, because thier parents do not trust the public school systems to keep thier kids safe. And who can blame the parents. Just watch the news and you will see evidence of this.
And it will continue to get worse. Just read some of The Bible prophecies that have yet to be fulfilled, but are only indications that the end times are getting nearer. It is into this world my wife and I brought a child. We both love Laura dearly. She is the greatest thing that has ever happened to us. She is beautiful and more fun that I ever thought possible. She is perfect.
As we toured The Rise School, I could not keep these thoughts out of my head. If she gets in, she will be safe, protected, loved, taught and cared for in away that is designed for Down's kids. She has her family, and mommy and daddy's friends to also keep her safe and fill her world with love. But, someday someone will try to take advatage of her innocense. They will use her sweetness to hurt her some how. That chances continue to rise with each passing day. It is my fear that for everything we will give her, that she will not be able to protect herself from this preson (whoever they are). Tara and I both pray that this never happens. We are clinging to God's promise to protect her all of her life. Please pray for her safety, and for the saefty of the the innocent little ones out there the world over.
Tuesday, July 14, 2009
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.
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.
Wednesday, July 8, 2009
Hope and Pain
"The Lord said to him, 'Who has made man's mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I the Lord?'"
Exodus 4: 11
Well today (Wednesday 7-8-09) was a day of hope and pain for Tara, Laura and I. I love and hate days like these. It actually started yesterday (Tuesday 7-7-09). Laura got to go for an unscheduled car ride, so daddy could make an unexpected run to the eye doctor. Nothing major, but I still needed to go. The long and short of it is that I have to put a bunch of eye drops in my eyes during the day, and some goop in my eyes before I go to bed each night. The goop is a little weird.
Then Laura's Granny came over yesterday evening (7-7-09) to play with her. This allowed Tara and I to get out and run an errand and go to dinner. Later yesterday evening we did the tummy time exercise again. It went very well. Laura was able to hold her head up and turn it and lay it back down with pretty good control. This was enough to have us just about jumping out of our skins in excitement. Then she amazed us even more by actually scooting on her belly just a little. The end result of that, was that she actually spun herself about 90 degrees. It was just so amazing to watch her do this all by herself, with no help from mommy or daddy.
However, she was not yet done with us. A little later when Tara was putting Laura back in her crib, Laura (who was on her back at this point) lifted her head again. This, in and of itself, is not that big a deal, but Laura did it right when Tara was about to adjust the sheet the she was going to swaddle Laura in. It was as if Laura had figured out what was coming and decided to help Tara.
Today (7-8-09) Early Childhood Intervention came by to do an evaluation. After many questions, and some hands on work, they determined that Laura is right where she should be for a baby of three weeks and three days old. We decided that our goal for the next 6 months would be to get Laura off of her NG tube, and to be feeding either by bottle or breast (with some rice cereal being worked in, with our Pediatrician's approval).
They also gave us some things to try with Laura to help her figure out her feeding. These included stroking her cheeks. This is to get her to pucker in preparation for the feeding. They also suggested that we gently tap around her mouth to further encourage the sucking motion. This made Tara and I very happy.
Once again her Granny came by to play with her for a little while. Then this evening we did the tummy time exercise. Again, she amazed us by picking her head up and turning it even more smoothly to the other side than she had done last night. She did this a couple of times for us. Who would have thought that such a simple thing would have brought us so much joy and excitement.
Then about an hour before one of her feedings she began her sucking motions. This caused Tara to lactate before she was ready. We jumped on the chance, and breast fed Laura. It was one of the best experiences that we have had yet with breast feeding.
So at this point you are thinking I see the hope Laura (a Down Syndrome baby) has given you, where is the pain? Well after the breast feeding I changed Laura. No big deal. She seemed much happier (which is normal for her) after her diaper change. We then moved her NG tube to the other nostril. This really sucks. First, you take it out. Not that big a deal. She fusses a little, but calms down once it is out. Unfortunately, you have to put it back in. Then NG tube runs through the nose to the stomach. Laura does not like this part of the procedure (not that I blame her). It is one of those thing you have to do, even though your baby does not like it. Our hearts break every time we have to do it, because she hates it so. The only thing that gets us through it, is that we know it is best for her. Otherwise it is a gut wrenching, awful experience that I HATE having to go through.
The best thing about the NG tube is that after placing it, and taping it down, is that we get to hold Laura afterword. This calms both her and us down. We will be so glad once that thing is gone.
Exodus 4: 11
Well today (Wednesday 7-8-09) was a day of hope and pain for Tara, Laura and I. I love and hate days like these. It actually started yesterday (Tuesday 7-7-09). Laura got to go for an unscheduled car ride, so daddy could make an unexpected run to the eye doctor. Nothing major, but I still needed to go. The long and short of it is that I have to put a bunch of eye drops in my eyes during the day, and some goop in my eyes before I go to bed each night. The goop is a little weird.
Then Laura's Granny came over yesterday evening (7-7-09) to play with her. This allowed Tara and I to get out and run an errand and go to dinner. Later yesterday evening we did the tummy time exercise again. It went very well. Laura was able to hold her head up and turn it and lay it back down with pretty good control. This was enough to have us just about jumping out of our skins in excitement. Then she amazed us even more by actually scooting on her belly just a little. The end result of that, was that she actually spun herself about 90 degrees. It was just so amazing to watch her do this all by herself, with no help from mommy or daddy.
However, she was not yet done with us. A little later when Tara was putting Laura back in her crib, Laura (who was on her back at this point) lifted her head again. This, in and of itself, is not that big a deal, but Laura did it right when Tara was about to adjust the sheet the she was going to swaddle Laura in. It was as if Laura had figured out what was coming and decided to help Tara.
Today (7-8-09) Early Childhood Intervention came by to do an evaluation. After many questions, and some hands on work, they determined that Laura is right where she should be for a baby of three weeks and three days old. We decided that our goal for the next 6 months would be to get Laura off of her NG tube, and to be feeding either by bottle or breast (with some rice cereal being worked in, with our Pediatrician's approval).
They also gave us some things to try with Laura to help her figure out her feeding. These included stroking her cheeks. This is to get her to pucker in preparation for the feeding. They also suggested that we gently tap around her mouth to further encourage the sucking motion. This made Tara and I very happy.
Once again her Granny came by to play with her for a little while. Then this evening we did the tummy time exercise. Again, she amazed us by picking her head up and turning it even more smoothly to the other side than she had done last night. She did this a couple of times for us. Who would have thought that such a simple thing would have brought us so much joy and excitement.
Then about an hour before one of her feedings she began her sucking motions. This caused Tara to lactate before she was ready. We jumped on the chance, and breast fed Laura. It was one of the best experiences that we have had yet with breast feeding.
So at this point you are thinking I see the hope Laura (a Down Syndrome baby) has given you, where is the pain? Well after the breast feeding I changed Laura. No big deal. She seemed much happier (which is normal for her) after her diaper change. We then moved her NG tube to the other nostril. This really sucks. First, you take it out. Not that big a deal. She fusses a little, but calms down once it is out. Unfortunately, you have to put it back in. Then NG tube runs through the nose to the stomach. Laura does not like this part of the procedure (not that I blame her). It is one of those thing you have to do, even though your baby does not like it. Our hearts break every time we have to do it, because she hates it so. The only thing that gets us through it, is that we know it is best for her. Otherwise it is a gut wrenching, awful experience that I HATE having to go through.
The best thing about the NG tube is that after placing it, and taping it down, is that we get to hold Laura afterword. This calms both her and us down. We will be so glad once that thing is gone.
Monday, July 6, 2009
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.
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.
Friday, July 3, 2009
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.
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."
Subscribe to:
Posts (Atom)
