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
Saturday, June 30, 2001
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
Friday, March 2, 2001
Ben is Scheduled to be Released from the Hospital
Ben is scheduled to be released from the hospital to come home tomorrow, March 4, 2001! - PRAISE GOD!!
His progress this last week has been nothing less than miraculous! - God is so wonderful and has heard the numerous prayers that people have been raising for Ben, Jennifer, Daniel, and me. THANK YOU, and KEEP IT UP, PLEASE!!
We are so excited about being able to bring Ben home and love him here. We also think that it will be much easier on Daniel to actually see his baby brother instead of just hearing about him. - I think he thinks Ben is just a figment of our imagination!
Of course, Jennifer and I have always known that Dan would be a great big brother and now we are more convinced of that than ever. We thank God for giving Daniel to us to love and to help us and Benjamin during times of struggle.
Our families - biological, Trinity, and family of friends - have been absolutely fabulous! They have constantly shown us their love and support this last week through letters, cards, gifts, hugs, tears, phone calls, and especially prayers. - Words cannot express how much every one of them - of you - mean to us! Thank you from the bottom of our hearts!
Jennifer and I have been reading up on Down syndrome but, obviously, still have much to learn. Here are just a few links:
We are just so pleased that God has blessed us with such a beautiful little boy and we know that, no matter what struggles arise, God will see us through them and work them out for good. (Romans 8:28)
Scott, Jennifer, Daniel, & Benjamin Heitshusen
His progress this last week has been nothing less than miraculous! - God is so wonderful and has heard the numerous prayers that people have been raising for Ben, Jennifer, Daniel, and me. THANK YOU, and KEEP IT UP, PLEASE!!
We are so excited about being able to bring Ben home and love him here. We also think that it will be much easier on Daniel to actually see his baby brother instead of just hearing about him. - I think he thinks Ben is just a figment of our imagination!
Of course, Jennifer and I have always known that Dan would be a great big brother and now we are more convinced of that than ever. We thank God for giving Daniel to us to love and to help us and Benjamin during times of struggle.
Our families - biological, Trinity, and family of friends - have been absolutely fabulous! They have constantly shown us their love and support this last week through letters, cards, gifts, hugs, tears, phone calls, and especially prayers. - Words cannot express how much every one of them - of you - mean to us! Thank you from the bottom of our hearts!
Jennifer and I have been reading up on Down syndrome but, obviously, still have much to learn. Here are just a few links:
We are just so pleased that God has blessed us with such a beautiful little boy and we know that, no matter what struggles arise, God will see us through them and work them out for good. (Romans 8:28
)Scott, Jennifer, Daniel, & Benjamin Heitshusen
Sunday, February 25, 2001
He's Here Early
Well, here he is, early!
Jen and I want to share with y'all all of the details about Ben's birth, but a full letter will have to wait until tomorrow...Until then, here is a short summary...
Ben came into the world through a quick delivery early Sunday morning. He had some trouble breathing and they took him to the Neonatal ICU for oxygen. They also performed an echocardiogram. Finally, they suspected that Benjamin has Down syndrome.
The "echo" seems to have come back fine. It appears that there is probably (though not defiantly) a small hole in the upper chamber of his heart. If so, any treatment would take place years later.
Benjamin has gone from 100% oxygen yesterday to having all external oxygen removed (as of 10pm 2/26)! - Praise God! This should mean that Ben may be able to come home a lot sooner than we expected! - God hears and answers prayers!
Also, although a chromosome analysis has not been done yet (but will be), it does, indeed, appear that God has blest us with a child that is more than others. - After all, almost everyone else just has 46 chromosomes and he has 47! - We certainly understand that Ben will have special struggles - as will we - but we also know that we couldn't have asked for a more beautiful (and feisty!) boy whom we adore. - God will see us through all of the struggles and joys; we have no doubts about that. - So please, do not feel sorry for us or Ben, but rejoice with us in the beautiful addition to our family - we certainly are!
More to come later...
Scott, Jennifer, Daniel, & Benjamin Heitshusen
Jen and I want to share with y'all all of the details about Ben's birth, but a full letter will have to wait until tomorrow...Until then, here is a short summary...
Ben came into the world through a quick delivery early Sunday morning. He had some trouble breathing and they took him to the Neonatal ICU for oxygen. They also performed an echocardiogram. Finally, they suspected that Benjamin has Down syndrome.
The "echo" seems to have come back fine. It appears that there is probably (though not defiantly) a small hole in the upper chamber of his heart. If so, any treatment would take place years later.
Benjamin has gone from 100% oxygen yesterday to having all external oxygen removed (as of 10pm 2/26)! - Praise God! This should mean that Ben may be able to come home a lot sooner than we expected! - God hears and answers prayers!
Also, although a chromosome analysis has not been done yet (but will be), it does, indeed, appear that God has blest us with a child that is more than others. - After all, almost everyone else just has 46 chromosomes and he has 47! - We certainly understand that Ben will have special struggles - as will we - but we also know that we couldn't have asked for a more beautiful (and feisty!) boy whom we adore. - God will see us through all of the struggles and joys; we have no doubts about that. - So please, do not feel sorry for us or Ben, but rejoice with us in the beautiful addition to our family - we certainly are!
More to come later...
Scott, Jennifer, Daniel, & Benjamin Heitshusen
ANNOUNCING A BIRTH
We joyfully announce the birth of BENJAMIN JAMES HEITSHUSEN @ 36 weeks!
He is 6 lbs., 13 oz. - Apgar: 8/9.
He is 6 lbs., 13 oz. - Apgar: 8/9.
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