Well, for the better part of the last 4 weeks we have been getting rained on here in Houston. It seems like forever since I have seen two days go by without any rain. It really sucks. But, that is the price of living in a city that used to be a swamp.
The good news, it did not rain on the Fourth of July or fathers day. That means Laura got to go swimming both days. Now the fourth of July swimming was really cold. It had been raining for three weeks at that point. But she still splashed and floated around quiet happily for a couple of hours.
But still, I am starting to feel like we are all walking around in a permanent pruney state from all of the water. The rain sure beats the heat and humidity that we normally get.
Through all of it, Laura is just as happy as she always is. As long as someone plays with her is paying attention to her, she does not care what is going on with the rest of the world.
That is not entirely true. Laura has a new teacher at school. She does not know the teacher yet so she gets clingy and cries when mommy drops her off each morning. We know this is just a stage she is going through, but it is still tough to walk away from our crying daughter.
We meet with the lady that will be Laura's new teacher at The Rise School next week. The meeting should be about an hour. I think it is mostly to discuss where Laura is currently at, and what we would like for her to accomplish in the next year.
We are having a hard time with this. We know The Rise School is the best place for Laura, but she will not be right down the hall from Tara anymore. We cannot just pop in and see her when we want to. This is going to be rough. But, this is what is best for Laura. And that is what we want. I am not looking forward to this.
Overall, Laura's therapist's think she is doing well. She is still not crawling, but at this point it is by her choice. She can easily hold herself up on all fours and rock (she is really quite good at it). She is getting to the point where she can stand without you having to be ready to catch her. She can hold herself up. Her therapists do want her to crawl before she walks. I am not sure if Laura agrees with this. Time will tell.
The Down Syndrome Association of Houston (http://www.dsah.org/) has scheduled their Buddy Walk for this year. It will be Saturday November 6th at Jones plaza. Laura will once again have a team. Her team is Laura's Lions. The walk is free for anyone and everyone who wants to come out, just register first so there is a record of who came out. We look forward to seeing you there. Here is hoping we can raise a ton of money for at free event.
Showing posts with label E.C.I.. Show all posts
Showing posts with label E.C.I.. Show all posts
Thursday, July 8, 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.
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!!
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.
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.
Tuesday, July 28, 2009
A cascade of prescriptions later . . .
"And we know that God causes all things to work together for good to those who love God, to those who are called to His purpose."
Romans 8: 28
First, I need to apologize. I am sorry there have not been any updates in over a week. Unfortunately I was sick for most of that time. I had a urinary track infection and bad diarrhea. One day I was running to the bathroom every 20 minutes. I know that is more information than anyone needs, but those who know me know I sometimes like to go for that ewwwwwwwwwwww factor. It is fun for me. An antibiotic and some Imodium AD and I am feeling better. Blasted conditions made me miss three days of work. Even worse I could hold or play with Laura. I just got to wave to her from a short distance.
Now for the really important things. Laura is doing great. Friday, Laura had an audiology exam. Everything seems to be OK. The Doctor and Audiologist were alittle confused about why E.C.I. would want a full work up on a 5 week old. Especially, since it would not add any information to what was learned in Laura's newborn screen. The audiologist said that this would normally be done around the 6 month time frame. They were going to contact E.C.I. and try to find out the reason for the screen. We have not heard back from either. I skipped the appointment because of my afore mentioned health issues.
Yesterday, we had 2 appointments for Laura. The first was with her pediatrician for a weigh in. Laura is coming in at 9 pounds and almost 8 ounces. She is growing and growing and growing. Tara and I are having a hard time wrapping our heads around the fact that Laura has put on nearly 2 1/2 pounds since she joined us in the out world. I swear, most of that weight is in her cheeks. Dr. Pielop did notice she had a yeast infection. He gave us a couple of prescriptions for Laura (one topical for her behind and liquid for inside her mouth). Lets hope they work.
Yesterday afternoon, we went back to TCH to meet with Laura's cardiologist. Here we waited forever. I do not understand how an office that stresses that you be on time for your appointment can make you wait for over an hour. It can drive me a little nuts. Sometimes Tara suffers the brunt of my frustration and boredom. She really is a trooper. I think I will keep her.
Once we got in things moved a little faster. Laura's cardiologist asked us how she was doing . We told him that her breathing was becoming more labored. When he checked her lungs he did not hear anything unusual. He did notice that her heart was beating a little faster than it should. This was expected given her heart condition. He said otherwise everything looked fine. We told him we seemed to get the feeding thing up and running one day (for a day she took more than 40 mL's at each feeding and had one feeding where she took over 55 mL). Then we dropped back down to about 20 mL on average. This was also expected, and is a sign that she is laboring more. At this point the doctor wrote a prescription for Lasiks. This should slow things down a little and hopefully get her back to feeding properly.
On the way our we saw Dr. Ayers. She is the specialist that diagnosed Laura's Heart problem. It was great to see her, and have her meet Laura for the first time.
The real scare happened today. To fill you in completely about what happened we must get in our time machine. Yesterday, between appointments Tara noticed a few drops of blood when she check Laura's NG tube placement. She called Dr. Pielop. They talked for a few minutes and decided to keep an eye on it. He said more than likely the NG tube had either given Laura a small nose bleed that had run to her stomach or the tube had irritated Laura's stomach. For the rest of the day everything seemed fine.
This morning at 4:30 (I still cannot believe I regularly and some what willingly get up that early, even if am grumpy) I checked the placement of Laura's tube in preparation for feeding her. I pulled .5mL of partially digested blood from Laura's stomach. This prompted a call to our pediatrician. He told us to take Laura to the Emergency Room at TCH. I did not go (because I did not want to miss another days work). It turns our that it was acid reflux, and that Laura has to much stomach acid. Tara and I are not sure who she get that from, as we both deal with it on a regular basis. Another prescription later, and she is doing fine. The doctor did tell us that we needed to keep Laura more upright when feeding her through the tube as well as for 30 minutes after. He also recommended raising her bed alittle higher. That last bit might have been the pharmacist over at Briargrove Pharmacy. I was very glad to get to get off of work a little early so I could hang out with Tara and Laura this afternoon.
I have never been a fan of not knowing. I do not like being in situations where I look like an idiot. Who does. But this morning was worse, while I was waiting for Tara to call me. Yes I was at work. Yes I did my work. But it was torture knowing there was something wrong with Laura, and there was nothing I could do about it. I know this is going to be a reoccurring situation, but that does not mean I have to like it. It really was not allot of fun.
In Less than 36 hours we now have 4 prescriptions for Laura. I do not think that I have ever had that many doctor ordered drugs to take at one time. Obviously that seems Like allot to me. So that is the catch up on Laura and what is going on. I hope everyone who reads this is doing well. I will have more later.
Romans 8: 28
First, I need to apologize. I am sorry there have not been any updates in over a week. Unfortunately I was sick for most of that time. I had a urinary track infection and bad diarrhea. One day I was running to the bathroom every 20 minutes. I know that is more information than anyone needs, but those who know me know I sometimes like to go for that ewwwwwwwwwwww factor. It is fun for me. An antibiotic and some Imodium AD and I am feeling better. Blasted conditions made me miss three days of work. Even worse I could hold or play with Laura. I just got to wave to her from a short distance.
Now for the really important things. Laura is doing great. Friday, Laura had an audiology exam. Everything seems to be OK. The Doctor and Audiologist were alittle confused about why E.C.I. would want a full work up on a 5 week old. Especially, since it would not add any information to what was learned in Laura's newborn screen. The audiologist said that this would normally be done around the 6 month time frame. They were going to contact E.C.I. and try to find out the reason for the screen. We have not heard back from either. I skipped the appointment because of my afore mentioned health issues.
Yesterday, we had 2 appointments for Laura. The first was with her pediatrician for a weigh in. Laura is coming in at 9 pounds and almost 8 ounces. She is growing and growing and growing. Tara and I are having a hard time wrapping our heads around the fact that Laura has put on nearly 2 1/2 pounds since she joined us in the out world. I swear, most of that weight is in her cheeks. Dr. Pielop did notice she had a yeast infection. He gave us a couple of prescriptions for Laura (one topical for her behind and liquid for inside her mouth). Lets hope they work.
Yesterday afternoon, we went back to TCH to meet with Laura's cardiologist. Here we waited forever. I do not understand how an office that stresses that you be on time for your appointment can make you wait for over an hour. It can drive me a little nuts. Sometimes Tara suffers the brunt of my frustration and boredom. She really is a trooper. I think I will keep her.
Once we got in things moved a little faster. Laura's cardiologist asked us how she was doing . We told him that her breathing was becoming more labored. When he checked her lungs he did not hear anything unusual. He did notice that her heart was beating a little faster than it should. This was expected given her heart condition. He said otherwise everything looked fine. We told him we seemed to get the feeding thing up and running one day (for a day she took more than 40 mL's at each feeding and had one feeding where she took over 55 mL). Then we dropped back down to about 20 mL on average. This was also expected, and is a sign that she is laboring more. At this point the doctor wrote a prescription for Lasiks. This should slow things down a little and hopefully get her back to feeding properly.
On the way our we saw Dr. Ayers. She is the specialist that diagnosed Laura's Heart problem. It was great to see her, and have her meet Laura for the first time.
The real scare happened today. To fill you in completely about what happened we must get in our time machine. Yesterday, between appointments Tara noticed a few drops of blood when she check Laura's NG tube placement. She called Dr. Pielop. They talked for a few minutes and decided to keep an eye on it. He said more than likely the NG tube had either given Laura a small nose bleed that had run to her stomach or the tube had irritated Laura's stomach. For the rest of the day everything seemed fine.
This morning at 4:30 (I still cannot believe I regularly and some what willingly get up that early, even if am grumpy) I checked the placement of Laura's tube in preparation for feeding her. I pulled .5mL of partially digested blood from Laura's stomach. This prompted a call to our pediatrician. He told us to take Laura to the Emergency Room at TCH. I did not go (because I did not want to miss another days work). It turns our that it was acid reflux, and that Laura has to much stomach acid. Tara and I are not sure who she get that from, as we both deal with it on a regular basis. Another prescription later, and she is doing fine. The doctor did tell us that we needed to keep Laura more upright when feeding her through the tube as well as for 30 minutes after. He also recommended raising her bed alittle higher. That last bit might have been the pharmacist over at Briargrove Pharmacy. I was very glad to get to get off of work a little early so I could hang out with Tara and Laura this afternoon.
I have never been a fan of not knowing. I do not like being in situations where I look like an idiot. Who does. But this morning was worse, while I was waiting for Tara to call me. Yes I was at work. Yes I did my work. But it was torture knowing there was something wrong with Laura, and there was nothing I could do about it. I know this is going to be a reoccurring situation, but that does not mean I have to like it. It really was not allot of fun.
In Less than 36 hours we now have 4 prescriptions for Laura. I do not think that I have ever had that many doctor ordered drugs to take at one time. Obviously that seems Like allot to me. So that is the catch up on Laura and what is going on. I hope everyone who reads this is doing well. I will have more later.
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.
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