Andrew does most of the talking here, but we did visit last weekend and took some photos, so I thought I would share them.
-- Christian
Monday, April 03, 2006
Wednesday, March 22, 2006
Olivia updates and the CDLS Picnic in Round Top
I know it has been a LONG while since I wrote anything for everyone to read about Olivia. We have had a busy 6 months since our last update. Olivia has not changed a whole lot at first glance, but just spending some time with her will tell a different story. She is still on continuous feeds. Well, sort of. We are doing a 30 minute feed with a 30 min break all day and night. The pump is supposed to have a setting to be able to start and stop in intervals (actually called “Interval” on the setting), but it doesn’t seem to recognize when the bag is empty in this mode. More experimentation is needed in the waking hours to verify any problem with us or with the equipment.
As of the last 6 months, we have been going through our routine mostly unchanged. We have had our last year of the Cinagis (sp?) shots and that was a battle with the insurance to get them this year even though our doctor insisted on them. They are a monthly RSV preventative vaccines. She is still fragile in that sense. After surviving a collapsed lung in Dec/Jan of ‘04/’05 and having the heart issues, she has bounced back tremendously well. But, we still don’t frequent the mall or take her out often. We did have a nice Thanksgiving here in Houston, and Olivia had her first REAL Christmas at home with all of us. We just had to hold Andy back from opening all his presents until we had Olivia ready for the day.
She has really become a mover of sorts. She scoots along and uses a lot of upper body motion to get her little butt across the room. She likes the magnet letters on her fridge. (Yes she has her own fridge and tv in her room; she could be a college student!) And she likes the pop-up toys and anything that uses her hand-eye skills. From the therapy center, she has a “Stander” which is a strange little contraption that looks like something Hannibal Lecter would be strapped into, but with pre-school patterns on it. The goal is to help straighten her legs, which have not had much weight on them at all yet. We have to get some braces for her lower legs first, and she is a tough case with that since she is so very small. We had some, but they were too big, even in infant size; then we have to put on her shoes, which she also loves (yeah, right) and then it takes two of us to hold her up and strap her in. She is still a bit too small for this device, but we will try to get her comfortable with it.
Other than that, she will have therapy at home twice a week and once a week at the therapy center. Our insurance only pays for 60 visits a fiscal year, so we are also supplementing that with ECI (Early Childhood Intervention), which is a therapy through the state (Texas FYI) which she will be eligible to receive until she is 3. We will still need much therapy after that, but we will take this for now and see what we can do down the road. She gets a speech therapy to help manipulate her facial muscles and maybe get her to talk someday. She also gets PT and OT to work on everything else.
Her reflux is still a big issue with us as well as the copious quantities of mucous that she generates and has trouble dealing with…we get to vent that stuff out as needed. She is pretty easy to read when that is bothering her. We do get around more than we used to that is for sure. She likes to be outside, as long as it is not too hot or if she is not in the direct sunlight for too long. We play with legos (big ones only, don’t worry) and other bins of toys that she can reach into and check out before tossing aside. Just like any other kid, she makes a big mess of her toys and expects us to clean them up! She does not care for plushy animals or dolls. She likes things that she can chew on and make some noise with.
She does have three teeth now. Two on the bottom and one up top, with more bound to come in soon. She is constantly chewing and drooling the “teething drool.” She is a very happy little girl most of the time as long as she is not kept in her chair for too long a period of time. She even went to Papadeaux’s with us to celebrate my bonus check! That went over really well actually. She was not fussy and we were able to make it through the entire meal (Cajun/seafood place) I even got the other two kids to try fried alligator!
Our big event was on March 11 at the beginning of spring break. We co-hosted an family picnic up in Round Top, Texas at Henkel Square. My company (Fairfield Industries Inc.) and Amegy Bank ( employer of our co-host family the Andersons) both donated $1000 each to CdLS Foundation to help pay for this event, and we asked the families to donate a small amount too to help cover the costs. This was for CdLS families in Texas, of which there are about 70. About 14 families made the journey for an afternoon of music, bbq and fellowship. We had a long tiring day of it all, but everything went wonderfully. The town of Round Top was a gracious host and the the historic society who run Henkel Square rented it to us at a generous discount. The historic houses that line the square were opened up for viewing all day, and a few local ladies were dressed in period costumes and gave tours as well. They even sprang for two port-a-johns with wheelchair access and a hand washing station too! They were wonderful to us. The food was great as we knew it would be, brought to us by Steed Johnson and his cowyboy catering. They made almost all the food on site and we were treated to the wonderful smells of BBQ cooking all morning. They topped it off with a peach cobbler and Blue Bell ice cream! We had his friend Ken singing traditional songs and also a bit of yodeling too to keep us entertained for part of the day. We were able to meet some really great people and made some friends and contacts for future gatherings and discussions about our ongoing health issues that we share. A few of the families live in the Houston area, but there were families from as far away as Harlingen and Wichita Falls!! All for an afternoon of food and strangers! We met kids close to Olivia’s age and a few who were 5 to 6 years old and then a 13 year old a 19 year old (boys) and one 29 year old girl. This was the first gathering for her parents in all the 29 years that they have been struggling with CdLS!! We were very pleased to have reached out to them.
We were completely exhausted by the end of the day, but it was worth it. I am sending a few pictures and I can send more to any of you if you want to see more. We look forward to knowing that everyone is making progress in the world of CdLS and in our own families. We are always impressed with Elfrieda and Marge and their strength. We await word on Roger’s coming home and hope that it happens soon!
Here is the note I sent to our company intranet site (only seen by Fairfield Industries Inc. employees)
CdLS Family Picnic
A generous donation of $1000 from Fairfield Industries helped employee Andrew Schultz's family host a gathering for families in Texas who have children with Cornelia de Lange Syndrome (CdLS) in Round Top, Texas. Families from across Texas were invited to join together for a day of music, BBQ and fellowship. About a dozen families were able to attend our gathering for the day in Henkel Square. There were some toys and games for all the kids with prizes as well, and plenty of sunshine to bask in. All the historic houses that make up the square were open, along with some local ladies in period costume who gave tours of the houses. The families represented a cross section of CdLS and Texas, with some traveling from as far away as Wichita Falls and Harlingen, as well as, CdLS “kids” aged from 18 months to 29 years, all for a single afternoon. Knowing that reaching out on a personal level is one of the main ways that families understand and cope with the unique health issues which arise with CdLS is why some would travel such a long way to be with total strangers for a few hours. All the families were excited to meet other families and kids and share their stories of heartache and hope. They were all extremely appreciative of the event and everyone made at least a few friends and some contacts for future support as theses kids grow and their needs change. For more information on CdLS please visit www.cdlsusa.org. If you want to see more pictures, please feel free to contact Andrew.
-- Andrew Schultz
As of the last 6 months, we have been going through our routine mostly unchanged. We have had our last year of the Cinagis (sp?) shots and that was a battle with the insurance to get them this year even though our doctor insisted on them. They are a monthly RSV preventative vaccines. She is still fragile in that sense. After surviving a collapsed lung in Dec/Jan of ‘04/’05 and having the heart issues, she has bounced back tremendously well. But, we still don’t frequent the mall or take her out often. We did have a nice Thanksgiving here in Houston, and Olivia had her first REAL Christmas at home with all of us. We just had to hold Andy back from opening all his presents until we had Olivia ready for the day.
She has really become a mover of sorts. She scoots along and uses a lot of upper body motion to get her little butt across the room. She likes the magnet letters on her fridge. (Yes she has her own fridge and tv in her room; she could be a college student!) And she likes the pop-up toys and anything that uses her hand-eye skills. From the therapy center, she has a “Stander” which is a strange little contraption that looks like something Hannibal Lecter would be strapped into, but with pre-school patterns on it. The goal is to help straighten her legs, which have not had much weight on them at all yet. We have to get some braces for her lower legs first, and she is a tough case with that since she is so very small. We had some, but they were too big, even in infant size; then we have to put on her shoes, which she also loves (yeah, right) and then it takes two of us to hold her up and strap her in. She is still a bit too small for this device, but we will try to get her comfortable with it.
Other than that, she will have therapy at home twice a week and once a week at the therapy center. Our insurance only pays for 60 visits a fiscal year, so we are also supplementing that with ECI (Early Childhood Intervention), which is a therapy through the state (Texas FYI) which she will be eligible to receive until she is 3. We will still need much therapy after that, but we will take this for now and see what we can do down the road. She gets a speech therapy to help manipulate her facial muscles and maybe get her to talk someday. She also gets PT and OT to work on everything else.
Her reflux is still a big issue with us as well as the copious quantities of mucous that she generates and has trouble dealing with…we get to vent that stuff out as needed. She is pretty easy to read when that is bothering her. We do get around more than we used to that is for sure. She likes to be outside, as long as it is not too hot or if she is not in the direct sunlight for too long. We play with legos (big ones only, don’t worry) and other bins of toys that she can reach into and check out before tossing aside. Just like any other kid, she makes a big mess of her toys and expects us to clean them up! She does not care for plushy animals or dolls. She likes things that she can chew on and make some noise with.
She does have three teeth now. Two on the bottom and one up top, with more bound to come in soon. She is constantly chewing and drooling the “teething drool.” She is a very happy little girl most of the time as long as she is not kept in her chair for too long a period of time. She even went to Papadeaux’s with us to celebrate my bonus check! That went over really well actually. She was not fussy and we were able to make it through the entire meal (Cajun/seafood place) I even got the other two kids to try fried alligator!
Our big event was on March 11 at the beginning of spring break. We co-hosted an family picnic up in Round Top, Texas at Henkel Square. My company (Fairfield Industries Inc.) and Amegy Bank ( employer of our co-host family the Andersons) both donated $1000 each to CdLS Foundation to help pay for this event, and we asked the families to donate a small amount too to help cover the costs. This was for CdLS families in Texas, of which there are about 70. About 14 families made the journey for an afternoon of music, bbq and fellowship. We had a long tiring day of it all, but everything went wonderfully. The town of Round Top was a gracious host and the the historic society who run Henkel Square rented it to us at a generous discount. The historic houses that line the square were opened up for viewing all day, and a few local ladies were dressed in period costumes and gave tours as well. They even sprang for two port-a-johns with wheelchair access and a hand washing station too! They were wonderful to us. The food was great as we knew it would be, brought to us by Steed Johnson and his cowyboy catering. They made almost all the food on site and we were treated to the wonderful smells of BBQ cooking all morning. They topped it off with a peach cobbler and Blue Bell ice cream! We had his friend Ken singing traditional songs and also a bit of yodeling too to keep us entertained for part of the day. We were able to meet some really great people and made some friends and contacts for future gatherings and discussions about our ongoing health issues that we share. A few of the families live in the Houston area, but there were families from as far away as Harlingen and Wichita Falls!! All for an afternoon of food and strangers! We met kids close to Olivia’s age and a few who were 5 to 6 years old and then a 13 year old a 19 year old (boys) and one 29 year old girl. This was the first gathering for her parents in all the 29 years that they have been struggling with CdLS!! We were very pleased to have reached out to them.
We were completely exhausted by the end of the day, but it was worth it. I am sending a few pictures and I can send more to any of you if you want to see more. We look forward to knowing that everyone is making progress in the world of CdLS and in our own families. We are always impressed with Elfrieda and Marge and their strength. We await word on Roger’s coming home and hope that it happens soon!
Here is the note I sent to our company intranet site (only seen by Fairfield Industries Inc. employees)
CdLS Family Picnic
A generous donation of $1000 from Fairfield Industries helped employee Andrew Schultz's family host a gathering for families in Texas who have children with Cornelia de Lange Syndrome (CdLS) in Round Top, Texas. Families from across Texas were invited to join together for a day of music, BBQ and fellowship. About a dozen families were able to attend our gathering for the day in Henkel Square. There were some toys and games for all the kids with prizes as well, and plenty of sunshine to bask in. All the historic houses that make up the square were open, along with some local ladies in period costume who gave tours of the houses. The families represented a cross section of CdLS and Texas, with some traveling from as far away as Wichita Falls and Harlingen, as well as, CdLS “kids” aged from 18 months to 29 years, all for a single afternoon. Knowing that reaching out on a personal level is one of the main ways that families understand and cope with the unique health issues which arise with CdLS is why some would travel such a long way to be with total strangers for a few hours. All the families were excited to meet other families and kids and share their stories of heartache and hope. They were all extremely appreciative of the event and everyone made at least a few friends and some contacts for future support as theses kids grow and their needs change. For more information on CdLS please visit www.cdlsusa.org. If you want to see more pictures, please feel free to contact Andrew.
-- Andrew Schultz
Tuesday, January 31, 2006
Very belated gallery
Here is a very belated gallery of Schultz family photos. Andy sent these to me on Jan. 4, but I'm just now getting to posting them.
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