Ben continues to do well - except sleeping at night. AUGH!! One of the medications he is on makes him restless at night. So we'll just have to wait this out.
Ben had two doctor appointments yesterday. The first was his annual cardiologist appointment. If you recall, when Ben was born he had a small "hole" in his heart. It is common and the doctors were not that concerned, saying that many times, these holes heal/close by themselves over time.
The hole is still there, (even though there is no blood going through it) but the cardiologist is not concerned. The hole may still close up by itself over the coming years. Worst case scenario would be if the hole is still there when Ben is about 5 or so, they would go up through an artery in his groin and fix it and he would be home that same day. So, not a big deal.
Ben also saw his pediatrician who wanted to check up on him since he has been home. He thought things are going well too. We will have to keep up the nebulizer treatments until his "cough" goes away, though, and we are not sure how long that will be.
All-in-all, though, he is a little lethargic from all the medications, but happy and doing well.
Praise God!
Monday, March 4, 2002
Saturday, March 2, 2002
Ben is Doing Great!
Ben is doing great! He has oral medication he takes every 8 hours and uses a nebulizer for breathing treatments 4 times a day (every six hours). His coughing still sounds atrocious, but that is supposed to clear up this week. He's eating well, playing well, and smiling, so we're happy.
Thank you for your continued prayers. Benjamin is evidence that He hears and answers them!
Thank you for your continued prayers. Benjamin is evidence that He hears and answers them!
Friday, March 1, 2002
He's Home & Happy!
He's home and happy! - We're getting his medications. We have to administer his medicated breathing treatment every 4-6 hours (even through the night) and the rest of his meds. are oral.
He will go back to the doctor for a checkup on Monday to see how things are.
Peace!
He will go back to the doctor for a checkup on Monday to see how things are.
Peace!
Ben is Off of the Oxygen Tent & the IV
God is good! - Ben is off of the oxygen tent and the IV (though he still has the IV lock, just in case he needs to go back to it).
They have been observing him today to see how this goes. We are still waiting to hear, though, whether or not he will get to come home tonight or we will have to wait until tomorrow. - We had hoped to hear by now, but we will just wait and see. Even when he does come home, we have some medications he will need to take orally as well as a machine that we will put medicine in and give periodic "breathing treatments". It is a simple thing and won't take much to do and it will help Ben, so it is a good thing.
A couple of other "wrenches" in things:
REQUESTS:
They have been observing him today to see how this goes. We are still waiting to hear, though, whether or not he will get to come home tonight or we will have to wait until tomorrow. - We had hoped to hear by now, but we will just wait and see. Even when he does come home, we have some medications he will need to take orally as well as a machine that we will put medicine in and give periodic "breathing treatments". It is a simple thing and won't take much to do and it will help Ben, so it is a good thing.
A couple of other "wrenches" in things:
- This morning, mom had a fever. She has been running it all day today, so she isn't able to see Ben as we don't want him exposed.
- The hospital administration office called us and said our insurance had expired! -- It hadn't, but there has been an huge blunder by our Health Plan Provider (not Trinity) in the transfer from Orlando. This will take some time to sort out. If other businesses were run like this...!
REQUESTS:
- That Benjamin gets to come home as soon and as safely as possible.
- That mom gets well.
Wednesday, February 27, 2002
News - Not All Good
Well, there's a lot of news, and that's not necessarily good.
Jennifer, Daniel, and I are well and feeling good, but Benjamin is a different story. This last Monday the little guy had his 1st birthday (yea!). On Tuesday, he had his one year doctor's checkup. He did fine, except that he had been fighting croup. However, that night, he was doing a lot worse. He could only sleep for about 10 minutes at a time and his breathing was very difficult. His breathing was difficult, his heart was racing, he had a fever, and his breathing had a "gurgling" sound to it. -- Not good.
Yesterday Jennifer took Ben back to the doctor who admitted him to the hospital. He is in an oxygen tent and has an IV with fluids and antibiotics. An X-Ray showed that he does have pneumonia as we feared. (Which he probably picked up from dad who had it again the week before.)
He is getting better, but it will take a little time. We hope he will come home either tomorrow or, at the latest, Saturday.
We are blessed, however, that Scott's parents drove in yesterday afternoon for a visit for almost a week, so we have extra help as well as good visitors. - Praise God!
We'll keep ya posted.
REQUESTS:
Jennifer, Daniel, and I are well and feeling good, but Benjamin is a different story. This last Monday the little guy had his 1st birthday (yea!). On Tuesday, he had his one year doctor's checkup. He did fine, except that he had been fighting croup. However, that night, he was doing a lot worse. He could only sleep for about 10 minutes at a time and his breathing was very difficult. His breathing was difficult, his heart was racing, he had a fever, and his breathing had a "gurgling" sound to it. -- Not good.
Yesterday Jennifer took Ben back to the doctor who admitted him to the hospital. He is in an oxygen tent and has an IV with fluids and antibiotics. An X-Ray showed that he does have pneumonia as we feared. (Which he probably picked up from dad who had it again the week before.)
He is getting better, but it will take a little time. We hope he will come home either tomorrow or, at the latest, Saturday.
We are blessed, however, that Scott's parents drove in yesterday afternoon for a visit for almost a week, so we have extra help as well as good visitors. - Praise God!
We'll keep ya posted.
REQUESTS:
- That Benjamin gets and stays well.
- That the rest of us continue to have the strength (and sleep) needed.
Thursday, February 21, 2002
Dad Got a Job!
Dad got a job!
The Lord certainly answers prayer! Within two weeks, dad got a new job with 21st Century Equipment in a very small town in Iowa, about 50 miles from where they live in Manchester. That means there will be a commute some days, but at least they don't have to move. Please say a prayer of thanks for this great news!
YEA, GOD!
REQUESTS:
The Lord certainly answers prayer! Within two weeks, dad got a new job with 21st Century Equipment in a very small town in Iowa, about 50 miles from where they live in Manchester. That means there will be a commute some days, but at least they don't have to move. Please say a prayer of thanks for this great news!
YEA, GOD!
REQUESTS:
- That we all get and stay well.
- The whole family has been fighting sicknesses of different sorts for the past week or so.
Saturday, June 30, 2001
Ben Update
Ben is doing great! He has been sleeping through the night since Mothers' Day (great gift, huh?!).
He can now lift his head up past 90 degrees when on his tummy. (Since he sleeps on his tummy, he has a lot of practice that way.)
He smiles and giggles and prefers talking with his brother than playing by himself.
He is content to play in his crib until we get our lazy selves up to get him.
With regard to his health, the "small hole in his heart" is not something the doctors are worried about. It will either heal by itself (or they will do something after he is one - probably with a non-surgical procedure). His lungs, bowels, hearing, and sight are all fine. In short, many of the things that can be major concerns are not for Ben (at least not right now).
Jen has been doing some speech therapy exercises with him (to strengthen his mouth muscles for eating and talking later) and he will be starting physical therapy twice a week in about a month. He will have an occupational therapy evaluation in a couple of weeks and an ophthalmologist appointment in October. He also will have his thyroid checked at six months. (He's supposed to have that checked every six months until he's three and then annually after.
Ben has a very strong preference for his right arm and looking at things to his right than to his left. His physical therapy will help with that. Also, since he is a little slower with holding his head steady and using his legs, that will be worked on too.
These are all due to the low muscle tone that is inherent in babies with Down syndrome. The therapies are to help keep him from falling behind too much.
Of course, it is still too early to tell the severity of Ben's Down syndrome, but right now he is very healthy, happy, and doing all the things a baby is supposed to be doing. -- We love him so much and he has brought such joy into our lives and the lives he continues to touch. Praise God!
Please keep Ben in your prayers. He is evidence that they work! :)
Blessings to all,
Scott & Jen
He can now lift his head up past 90 degrees when on his tummy. (Since he sleeps on his tummy, he has a lot of practice that way.)
He smiles and giggles and prefers talking with his brother than playing by himself.
He is content to play in his crib until we get our lazy selves up to get him.
With regard to his health, the "small hole in his heart" is not something the doctors are worried about. It will either heal by itself (or they will do something after he is one - probably with a non-surgical procedure). His lungs, bowels, hearing, and sight are all fine. In short, many of the things that can be major concerns are not for Ben (at least not right now).
Jen has been doing some speech therapy exercises with him (to strengthen his mouth muscles for eating and talking later) and he will be starting physical therapy twice a week in about a month. He will have an occupational therapy evaluation in a couple of weeks and an ophthalmologist appointment in October. He also will have his thyroid checked at six months. (He's supposed to have that checked every six months until he's three and then annually after.
Ben has a very strong preference for his right arm and looking at things to his right than to his left. His physical therapy will help with that. Also, since he is a little slower with holding his head steady and using his legs, that will be worked on too.
These are all due to the low muscle tone that is inherent in babies with Down syndrome. The therapies are to help keep him from falling behind too much.
Of course, it is still too early to tell the severity of Ben's Down syndrome, but right now he is very healthy, happy, and doing all the things a baby is supposed to be doing. -- We love him so much and he has brought such joy into our lives and the lives he continues to touch. Praise God!
Please keep Ben in your prayers. He is evidence that they work! :)
Blessings to all,
Scott & Jen
Daniel Update
Daniel continues to amaze us. He is such a sponge and always energetic. He continues to have so much energy that he wears us out just watching him. He also constantly makes Jen and I look at each other and wonder "where/how did he learn that?" (all good things!).
Some of the highlights...Daniel knows:
He likes to eat goldfish crackers, pizza, pumpkin muffins from Paneras and pancakes by mommy.
He knows that Jesus takes care of us (and heals his "owies") and that God gives us everything that we need. He also has fun at "daddy's church". -- Since he has been going there since birth, he is very well behaved there now. -- That's the key; getting them used to it early! :)
Blessings to all,
Scott & Jen
Some of the highlights...Daniel knows:
colors
shapes
- that mommy likes to shop at Target and drink coffee coolers at Barnies
- swimming (almost every day. In fact, sometimes the only way we can get him to take a nap is to say "if you don't take a nap, we can't go swimming later." That usually does it!)
- playing with his friends
cooking - especially cookies and daddy's cake (which, of course, dad likes too)
watching Veggietales, Teletubbies, The Wiggles, Barney & Friends, and other videos
playing songs on and singing with his guitar (His favorites are singing "blue swade shoes" with Elmo and a song that The Wiggles sing.)
climbing
He likes to eat goldfish crackers, pizza, pumpkin muffins from Paneras and pancakes by mommy.
He knows that Jesus takes care of us (and heals his "owies") and that God gives us everything that we need. He also has fun at "daddy's church". -- Since he has been going there since birth, he is very well behaved there now. -- That's the key; getting them used to it early! :)
Blessings to all,
Scott & Jen
Saturday, March 31, 2001
HE IS RISEN, INDEED! - Celebrating New Life
TrinityDowntown Newsletter
April 15th will be the day this year when we celebrate the resurrection from the dead of our Lord and Savior, Jesus Christ! It is a day when we are reminded that “because He lives, we, too, shall live.” It is a time when we take joy in the new, eternal life that is ours because of the empty tomb.
The celebration of new life will have special significance for many in our church family this year. As we celebrate new life in Jesus outside the tomb, there have been several of our Trinity families who have had children and are celebrating God’s gift of new life outside the womb.
Jennifer and I are among those families. On Transfiguration Sunday at 3:36 a.m., God blessed us with the birth of a baby boy, Benjamin James Heitshusen. He is beautiful and we are ecstatic!
But that joy would turn to uncertainty as we would get some surprising news. Benjamin had Down syndrome.
Some of you may wonder what this condition is and what it will mean. I want to answer some of those basic questions so that you can understand more of what is happening with Ben and our family and so that you won’t feel fear or disappointment for us.
Down syndrome gives Benjamin “more” than others, literally. Whereas most people have 46 chromosomes (23 from each parent), Ben has 47. That extra chromosome gives the body “conflicting” information when the body needs instructions on how the body needs to be structured, etc. The severity is varied but there is a slowed learning and developmental abilities in almost all (most characterized from mild to moderate). Even more frequently there often may be speech, hearing, sight, heart, intestinal, and lung problems.
Although it is too early to tell how many of these issues and their severity will affect Ben, we know that we will get through it with God’s help.
We also want to share some other characteristics of Down syndrome people that are often overlooked. An unscientific look by parents with Down syndrome children indicates that they are above average in being compassionate, social, enthusiastic, friendly, caring, curious, affectionate, in their sense of humor, and in their perseverance.
In other words, God has given us a very special gift in Benjamin. We praise and thank Him for this wonderful gift of life and we look forward to spending our time with him as God uses us to touch him and him to touch us.
That is the gift God has given us in Jesus Christ, too. We tend to see the uncertainties of life as being undesirable – especially when the outcome might be in question or may be more difficult. We would rather have a controlled, manageable, known situation that is easy to work with and which fits into our own reality.
But God sometimes blesses us with the exact opposite. He allows struggles, hardships and uncertainties to touch us and our structured, detailed world, but always promises to see us through the difficulties and to bless us more than we could imagine through them. (See Romans 8:28)
That’s exactly what happened on the cross of Calvary, too. It was not a path that was desirable because it included pain, suffering, and even death. But God used it to accomplish so much more than we could imagine – our very salvation. He gave us a new life to celebrate through that wonderful gift. He gave us the surprising gift of life where there was only death expected.
May you see in your unexpected surprises – no matter what they are – God’s gift. He has promised to work good through them and will bless you beyond your imagination. The empty cross and tomb are proof of that.
Take joy in the new life God has given in Jesus and what that means for your blessed life here and now. In Jesus’ Name; Amen.
Scott Heitshusen,
Pastor
This article was in the April TrinityDowntown newsletter for Trinity Lutheran in Orlando, FL
April 15th will be the day this year when we celebrate the resurrection from the dead of our Lord and Savior, Jesus Christ! It is a day when we are reminded that “because He lives, we, too, shall live.” It is a time when we take joy in the new, eternal life that is ours because of the empty tomb.
The celebration of new life will have special significance for many in our church family this year. As we celebrate new life in Jesus outside the tomb, there have been several of our Trinity families who have had children and are celebrating God’s gift of new life outside the womb.
Jennifer and I are among those families. On Transfiguration Sunday at 3:36 a.m., God blessed us with the birth of a baby boy, Benjamin James Heitshusen. He is beautiful and we are ecstatic!
But that joy would turn to uncertainty as we would get some surprising news. Benjamin had Down syndrome.
Some of you may wonder what this condition is and what it will mean. I want to answer some of those basic questions so that you can understand more of what is happening with Ben and our family and so that you won’t feel fear or disappointment for us.
Down syndrome gives Benjamin “more” than others, literally. Whereas most people have 46 chromosomes (23 from each parent), Ben has 47. That extra chromosome gives the body “conflicting” information when the body needs instructions on how the body needs to be structured, etc. The severity is varied but there is a slowed learning and developmental abilities in almost all (most characterized from mild to moderate). Even more frequently there often may be speech, hearing, sight, heart, intestinal, and lung problems.
Although it is too early to tell how many of these issues and their severity will affect Ben, we know that we will get through it with God’s help.
We also want to share some other characteristics of Down syndrome people that are often overlooked. An unscientific look by parents with Down syndrome children indicates that they are above average in being compassionate, social, enthusiastic, friendly, caring, curious, affectionate, in their sense of humor, and in their perseverance.
In other words, God has given us a very special gift in Benjamin. We praise and thank Him for this wonderful gift of life and we look forward to spending our time with him as God uses us to touch him and him to touch us.
That is the gift God has given us in Jesus Christ, too. We tend to see the uncertainties of life as being undesirable – especially when the outcome might be in question or may be more difficult. We would rather have a controlled, manageable, known situation that is easy to work with and which fits into our own reality.
But God sometimes blesses us with the exact opposite. He allows struggles, hardships and uncertainties to touch us and our structured, detailed world, but always promises to see us through the difficulties and to bless us more than we could imagine through them. (See Romans 8:28)
That’s exactly what happened on the cross of Calvary, too. It was not a path that was desirable because it included pain, suffering, and even death. But God used it to accomplish so much more than we could imagine – our very salvation. He gave us a new life to celebrate through that wonderful gift. He gave us the surprising gift of life where there was only death expected.
May you see in your unexpected surprises – no matter what they are – God’s gift. He has promised to work good through them and will bless you beyond your imagination. The empty cross and tomb are proof of that.
Take joy in the new life God has given in Jesus and what that means for your blessed life here and now. In Jesus’ Name; Amen.
Scott Heitshusen,
Pastor
This article was in the April TrinityDowntown newsletter for Trinity Lutheran in Orlando, FL
Sunday, March 11, 2001
Home for a Week Now
Ben has been home for a little more than a week now and everything is working out beautifully!
Dan still loves his baby brother (most of the time); Ben is eating well, responding well, and sleeping well (YEA)!
He had his two week checkup last week (a little early) and the doctor was very impressed with his muscle tone. (In fact, there are several occasions when Ben has lifted his head up!) This is very good news as this can be a struggle in people with DS.
We also got a call letting us know how the chromosome analysis went. It is confirmed that Ben has "Trisomy 21" (Down syndrome). The good news is that (1)it is not a kind that is inherited, so future children possibilities (this is not an announcement or endorsement that we will/will not have other children!) are not more inclined to have Down syndrome as well and (2)it is "straight Trisomy 21" and not "translocation" (where the extra chromosome "translocates" and attaches itself to another gene) or "mosaicism" (some cells in the body have 46 chromosomes and others have 47, making a "mosaic", if you will). Upwards of 95% of those with Down syndrome have straight Trisomy 21. - This is good news.
A question that has been asked of us (and indeed, that we have asked) is "how severe is Ben's case of Down syndrome?" - In other words, how severely will Ben be affected? How much impairment will there be? etc.
Answer: We don't know. This is something we will have to "wait and see". But whatever the severity, we love him so much and will work with him through it and God will supply the strength. It will be a time for us to slow down and "stop and smell the roses" in this busy world, even while spending it with our beloved children. - How can this not be a blessing?
It should also be noted that, whereas, in the past, a child with Down syndrome was institutionalized and never thought to have a chance of a normal life because s/he would be severely mentally retarded and impaired, it is now known that most people with Down syndrome either have "mild to moderate" learning disabilities and, when worked with early through interventions, exercises, and special techniques, many can be in some (or all) mainstream classes. Many will live in a "group home" with shared responsibilities, but there are more and more cases of Down syndrome people living a "normal" life than ever before. -- Some even marry and have children! (It should be noted that almost all males with Down syndrome are sterile but many females with Down syndrome can have children.)
Anyway, I guess that is enough for now. I'll try to keep this up.
Blessings in our Awesome God,
Scott, Jen, Dan, & Ben
Dan still loves his baby brother (most of the time); Ben is eating well, responding well, and sleeping well (YEA)!
He had his two week checkup last week (a little early) and the doctor was very impressed with his muscle tone. (In fact, there are several occasions when Ben has lifted his head up!) This is very good news as this can be a struggle in people with DS.
We also got a call letting us know how the chromosome analysis went. It is confirmed that Ben has "Trisomy 21" (Down syndrome). The good news is that (1)it is not a kind that is inherited, so future children possibilities (this is not an announcement or endorsement that we will/will not have other children!) are not more inclined to have Down syndrome as well and (2)it is "straight Trisomy 21" and not "translocation" (where the extra chromosome "translocates" and attaches itself to another gene) or "mosaicism" (some cells in the body have 46 chromosomes and others have 47, making a "mosaic", if you will). Upwards of 95% of those with Down syndrome have straight Trisomy 21. - This is good news.
A question that has been asked of us (and indeed, that we have asked) is "how severe is Ben's case of Down syndrome?" - In other words, how severely will Ben be affected? How much impairment will there be? etc.
Answer: We don't know. This is something we will have to "wait and see". But whatever the severity, we love him so much and will work with him through it and God will supply the strength. It will be a time for us to slow down and "stop and smell the roses" in this busy world, even while spending it with our beloved children. - How can this not be a blessing?
It should also be noted that, whereas, in the past, a child with Down syndrome was institutionalized and never thought to have a chance of a normal life because s/he would be severely mentally retarded and impaired, it is now known that most people with Down syndrome either have "mild to moderate" learning disabilities and, when worked with early through interventions, exercises, and special techniques, many can be in some (or all) mainstream classes. Many will live in a "group home" with shared responsibilities, but there are more and more cases of Down syndrome people living a "normal" life than ever before. -- Some even marry and have children! (It should be noted that almost all males with Down syndrome are sterile but many females with Down syndrome can have children.)
Anyway, I guess that is enough for now. I'll try to keep this up.
Blessings in our Awesome God,
Scott, Jen, Dan, & Ben
Monday, March 5, 2001
Ben's Home!
Ben came home on Sunday, March 4 as planned! We are so pleased to have him home and off all IVs, monitors, and antibiotics.
Daniel was absolutely fabulous! In fact, we had to hold him back because he kept wanting to "huga baby" and "huga Beh". - He also gave Ben a lot of great kisses. (We got some of this on video!) We got a couple of pictures when Dan laid next to Ben, but was still checkin' things out - not exactly sure what to expect.Unlike Daniel, Ben actually sleeps! - WOW! He usually sleeps in 3-5 hour intervals, waking between them to be changed and fed. - This is quite a change from Daniel who didn't ever want to miss anything ad so stayed awake as much as he possibly could.
Ben also doesn't seem to need to (or want to) "scream" when he needs food. He cries, but not like Daniel did.
Mom and I could get used to this!
Anyway, he is eating and sleeping well. He loves to be held and cuddled, and Daniel is starting to get used to his presence. All-in-all, he is doing splendidly!
In our gracious and loving Lord, Jesus Christ,
Scott, Jen, Dan, & Ben
Daniel was absolutely fabulous! In fact, we had to hold him back because he kept wanting to "huga baby" and "huga Beh". - He also gave Ben a lot of great kisses. (We got some of this on video!) We got a couple of pictures when Dan laid next to Ben, but was still checkin' things out - not exactly sure what to expect.Unlike Daniel, Ben actually sleeps! - WOW! He usually sleeps in 3-5 hour intervals, waking between them to be changed and fed. - This is quite a change from Daniel who didn't ever want to miss anything ad so stayed awake as much as he possibly could.
Ben also doesn't seem to need to (or want to) "scream" when he needs food. He cries, but not like Daniel did.
Mom and I could get used to this!
Anyway, he is eating and sleeping well. He loves to be held and cuddled, and Daniel is starting to get used to his presence. All-in-all, he is doing splendidly!
In our gracious and loving Lord, Jesus Christ,
Scott, Jen, Dan, & Ben
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