That's right folks, after only 4 months of capture and domination by this completely alien thing in our lives, and we are starting to see some normalcy again. Of course I am reasonably sure Laura is not an actual alien, but what better description for a semi gelatinous mass that squirms, wiggles (around our house we have combined the two words to form a new more powerful word squiggle), makes weird noises (which she will do for long periods of time, whether you are there to talk back to her or not) and completely dominates every aspect of our lives. She smiles almost constantly. Nothing like that big toothless grin to turn the day around. Perhaps further evidence that Laura might be an alien, she has unusual powers (as I just mentioned, her smile).
The girl is a mess. For a child that cannot move under her own power, she is all over the place. Tara and I live in constant fear of two things. First, that when she starts to crawl and walk we will never get any rest as she will be on the go. I had really better start getting into better shape. In truth this would be a great thing. She already shows incredible curiosity about her surroundings. We are very excited about reaching a time when she can explore them more thoroughly.
The second thing we live in fear of, is that Laura will be a constant talker. You know, the type of person that just never shuts up, no matter what you do or say to them to get them to leave you alone. As I said above, Laura is constantly making all kinds of noises, whether you are there or not. That is great. Tara and I encourage her constantly to be more vocal. But we are afraid that once she figures out how to form words, she will go from two and three words sentences to hours long dissertations on her stuffed animal in no time. God help us all. Actually, given her Down Syndrome I would be very proud of her if she were to make that leap.
Ok, now for the updates. By now Laura should be over 14.5 pounds. She had her 4 month check up and shots last week and she weighed 14 pounds 6 ounces. She is 24 inches long. This all means that she is above the 90% range for height and weight. That is great news. Everything I have described in the post so far continues to point to Laura's surgery being a complete success. We are incredibly grateful for that.
Other tidbits. We are down to 6 feeds a day. This means we have an 8 hour period at night where we can try to get some sleep. I hope we are able to further reduce her number of feeds in the not to distant future. Yes she sleeps very well through the night.
Laura has successfully rolled from her back to her belly all on her own. Tara and I were very excited to see this. Laura looked a little confused about how she had gotten that way, but once she got back onto her back again she tried to turn over again.
She is also starting to reach for things. Up until now, if she had something in her hand it was either placed there or she found it by accident. Now she pulls burp clothes off of shoulders to suck on them. She also reaches for toys that she can see in her stroller or carrier.
Most importantly, she is starting to figure out how to feed from her bottle. For over a month before her surgery she fed pretty much from an NG tube. She has fed primarily from the tube since her surgery. We work with her on almost every feed. She is constantly taking about 5 mL. But she usually has one feed a day where she will take more. This is a great thing.
So as you can see things are constantly changing around here. It is fun to see it all happening. I will try to get pictures up soon. We have some great ones.
Just a reminder, the Down Syndrome Association of Houston 2009 Buddy walk is November 14th at Jones plaza. There is still time to sign up to walk or donate to DSAH. To do either go to www.dsah.org. On the left side of your screen you will see the word Buddywalk. Click on it. Then in the middle of your screen you will see a link to the 2009 Buddywalk page. Click on that link. Then click on the link for Find Team. In the first blank field on the right side of your screen type Laura's Lions, and click the search button just below. Then click on the link to Laura's Lions team page. From there you can donate, sign up to walk or both. To all those who have already donated or signed up to walk, we cannot thank you enough.
Wednesday, October 28, 2009
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.
Wednesday, October 7, 2009
The Latest . . .
Well Laura is almost four months old. Where did the time go?
Here are the technical updates. As of her last appointment with her cardiologist, she is right at 23 inches long and just under 14 pounds. Of course when they weighed her she had missed a meal, so she may be over 14 pounds now. She certainly does not look like she has missed a meal.
Now for what everyone wants to know. Her recovery is going great. She is so much more active and alert now. Everything she does is about trying to interact with her environment. In the last few days she has made a concerted effort to reach for her toys when you dangle them in front of her. For the last week or two she has tried to reach for your face when you hold her (assuming she does not fall asleep in your arms, which is very common). Now her gross motor control is not very good yet, so all this reaching is basically controlled flailing, but her daddy likes brag on her and exaggerate what she is doing.
She also trys to talk to you. Her therapist calls it cooing. I like to call it talking. We are supposed to mimic the sounds back to her so she will keep making them.
She has also started to try to support herself in a sitting position. What do I mean, you are asking? I don't blame you. I could have phrased that better. Basically, if we have her sitting in our lap she will use her abs to try and support herself in that position. Usually what happens is she gets a rocking motion going as she tenses then releases her ab muscles.
Our therapist also has us doing some leg exercises with her. This is to help her build muscle tone so that she will hopefully start moving on her own close to the same time as most babies.
Most importantly, we are trying to feed her from a bottle again. Since she has a good suck and is trying to talk to us, she should be able to feed from the bottle. We are very excited about the fact that she will take a milliliter or two at each feed. We are hoping that this means she will take to it sometime next week. Right now it is small victories, like she will open her mouth when she sees the bottle. We are very excited.
Laura watched her first College football game this past weekend. Unfortunately, the Aggies lost. However we got these great pictures out of it. We hope you enjoy them as much as we do.
However, the most important thing she has ever done is seen in these pictures. As everyone can plainly see she is trying hard in the second picture to give the Aggie Gig'em sign. She will get a second chance this Saturday. I will let you know if she succeeds.
Here are the technical updates. As of her last appointment with her cardiologist, she is right at 23 inches long and just under 14 pounds. Of course when they weighed her she had missed a meal, so she may be over 14 pounds now. She certainly does not look like she has missed a meal.
Now for what everyone wants to know. Her recovery is going great. She is so much more active and alert now. Everything she does is about trying to interact with her environment. In the last few days she has made a concerted effort to reach for her toys when you dangle them in front of her. For the last week or two she has tried to reach for your face when you hold her (assuming she does not fall asleep in your arms, which is very common). Now her gross motor control is not very good yet, so all this reaching is basically controlled flailing, but her daddy likes brag on her and exaggerate what she is doing.
She also trys to talk to you. Her therapist calls it cooing. I like to call it talking. We are supposed to mimic the sounds back to her so she will keep making them.
She has also started to try to support herself in a sitting position. What do I mean, you are asking? I don't blame you. I could have phrased that better. Basically, if we have her sitting in our lap she will use her abs to try and support herself in that position. Usually what happens is she gets a rocking motion going as she tenses then releases her ab muscles.
Our therapist also has us doing some leg exercises with her. This is to help her build muscle tone so that she will hopefully start moving on her own close to the same time as most babies.
Most importantly, we are trying to feed her from a bottle again. Since she has a good suck and is trying to talk to us, she should be able to feed from the bottle. We are very excited about the fact that she will take a milliliter or two at each feed. We are hoping that this means she will take to it sometime next week. Right now it is small victories, like she will open her mouth when she sees the bottle. We are very excited.
Laura watched her first College football game this past weekend. Unfortunately, the Aggies lost. However we got these great pictures out of it. We hope you enjoy them as much as we do.
However, the most important thing she has ever done is seen in these pictures. As everyone can plainly see she is trying hard in the second picture to give the Aggie Gig'em sign. She will get a second chance this Saturday. I will let you know if she succeeds.
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