|
Post by Evans Dad on Sept 1, 2005 9:50:45 GMT -5
I am working on a website that donations can be made to as well, I know some people are not familiar with paypal nor have a paypal account, but that was the quickest option. Once I get the site up I will post the link.
Clint
|
|
|
Post by Evans Dad on Sept 1, 2005 9:21:32 GMT -5
Hey Everyone It's Clint, well I have read some of the other posts and we need to help. Shreveport was not directly affected but we have a lot of Red Cross sites set up locally, and I have a houseful. Our family is safe and we have located the last couple of members in Houston. Many of you have asked how we can help the Gulf Coast region Down Syndrome Support groups. I have contacted Paypal and set up a general donation fund. The funds from this account will be maintained with Paypal, and through the guidance of the NDSS they will be dispursed directly to local groups that were affected. Please go to www.paypal.com, the account was set up using our groups email. Money can be sent to the following email address: upwithdowns@hotmail.com Please continue to pray for our families, we have heard it could be months if not years that the rebuild will be complete, especially New Orleans. I have been in contact with the DSAGNO's president and they still have many families missing. Email me with any questions to the above email. Thanks in advance for your support for our Gulf Coast groups that have been devastated. Clinton Swanson President Up With Downs
|
|
|
Post by Evans Dad on Aug 27, 2005 14:54:40 GMT -5
|
|
|
Post by Evans Dad on Aug 8, 2005 20:48:56 GMT -5
Welcome Mitch
Glad you found the site, we look forward to meeting your family at our Buddy Walk this year.
Clint
|
|
|
Post by Evans Dad on Jul 29, 2005 11:48:06 GMT -5
Believe it or not after I sent this to my wife she wanted to start the process. We have some more discussing to but sounds like we may strongly consider adopting this little guy. We live in Shreveport La which is only about 6hrs away from New Orleans. We are not positive that this is what we want to do, we have a lot of thinking to do.
Clint
|
|
|
Post by Evans Dad on Jul 29, 2005 8:09:14 GMT -5
Hey Everyone I just received this email through our church distribution email out of New Orleans. It Reads: We are searching for a family for a Caucasian Male Down Syndrome Baby born on July 2, 2005 (8 weeks early). Birth weight 3 pounds, 9 ounces. He is currently on a feeding tube which is expected to be removed before discharge. There is no other medical support at present. The birthmother is requesting a family that has no more than 2 children in the home. It is also necessary for the family to be home study ready. This is the updated information that we received from the hospital yesterday. Both birth parents are active in the adoption plan. The adoption fee for this adoption will be $5,000. The adoption cost goes to bp services (counseling, surrenders, living expenses, etc) and ICPC preparation (fed ex, copying, etc). This fee is typically $10,000 but it was decreased due to the limited amount of bp services needed and the special needs situation. We are able to provide bp support for up to 45 days. The only additional money will be due to the agency attorney to transfer the adoption file from our courts to your courts to allow for finalization in your state rather than a return trip to New Orleans. That fee is $600 and paid directly to the attorney. Are these fees affordable for your family? Are you aware of the adoption tax credit of up to $10,000? The social worker will fax over the necessary medical info on Thursday. Looks like the baby will not be discharged in the next two weeks as the birth parents thought. Baby is almost 4 pounds now and is doing well. Before he is discharged, he needs to be 5 pounds (or close to), breathing room air, and bottle feeding. He is still in an isolette, and being tube fed, but they are in the process of transitioning to bottle feeding. He does have a heart murmur and a heart related blood flow issue that may require surgery but they will not know definitively until he is bigger and they can perform more extensive testing. The surgery, if required may or may not need to be performed before discharge (too early to tell). Danna Cousins Adoption Program Director Catholic Charities Adoption Services Archdiocese of New Orleans dcousins@archdiocese-no.org www.accesspregnancy.com
|
|
|
Post by Evans Dad on Jul 23, 2005 13:33:24 GMT -5
Welcome to UnoMas.. Boy have we been there with Evan. Evan was on an NG tube for the first year of his life. We tried everything, to be honest not much worked. The haberman feeders worked for a little while, but we did get the best results from these bottles. Here is what we learned, because of his heart surgery and prematuraty he did not have the sucking skill. While he was NG feeding we always had a binky in his mouth so he would correlate sucking with getting full.
Well finally it came to his one year birthday and we noticed something, when we tried the bottle he would fuss, but as soon as the feeding machine came out he was happy..Hmmmmmmmmmmmm at that age it was a behavorial issue, we were lucky we had a great doctor and was willing to work with us on a cold turkey method. On his 1st birthday we pulled the tube, it was hard for a couple of days and he lost some weight, but when he realized we were not going to give in he started eating and drinking from a sippy cup, we skipped the bottle. I guess since we had tried everything we could, we came to a point where we accepted the tube knowing that when he was ready he wouldn't need it.
I know it is hard, and please try everything to get rid of the tube, we didn't have as much luck making the switch early and had to go cold turkey. Like I said above I would start with the haberman because if we could have gotten Evan off the tube with anything that would have been it. If weight becomes a problem we used a supplement called "Enfamil Human Milk Fortifier" and it worked great. I know this isn't the best advice because it took us a year, but try everything in your power and keep working on it.
Be patient with OT, it takes more than a couple of weeks to get results. We never had problems with throwing up, sounds like maybe a little Reflux, but I am not sure.
Clint
|
|
|
Post by Evans Dad on Jul 15, 2005 16:49:25 GMT -5
Thanks for your help, I have made him an appointment with an ortho for the 25th, we have locally that fits for sure steps, but he said he also has a couple new things. Lucky I have really good insurance and since this doctor is in network insurance picks up 100%.
Thanks again Clint
|
|
|
Post by Evans Dad on Jul 15, 2005 10:58:08 GMT -5
Hey Everyone
Evan is starting to walk but last night we noticed he is starting to turn his heels in a little bit. Does anyone have any suggestions on braces or supports for ankles?
Thanks Clint
|
|
|
Post by Evans Dad on Jul 12, 2005 8:16:08 GMT -5
|
|
|
Post by Evans Dad on Jun 21, 2005 9:13:41 GMT -5
Hey Jodi
We have had Evan in swim lessons since he was about 5mnths old, he is now 2.5 and loves the water. He started at the YMCA in waterbabies and has progressed to lessons with kids his own age. We kind of have an advantage since Grandma and Grandpa have a big pool as well.
Good Luck Clint
|
|
|
Post by Evans Dad on Nov 12, 2004 12:38:54 GMT -5
Just puting this back on the main page.
Clint
|
|
|
Post by Evans Dad on Oct 25, 2004 8:56:36 GMT -5
Hey Everyone Just wanted to drop in and say hi, our Buddy Walk was this past Saturday and was a big success. Even though this was only our 2nd walk we had almost 400 registrants that walked. The weather was supposed to be crapy all weekend, but it stayed away and we had a great time. Just thought I would post a picture of Jen, Evan and Chris. Evan really enjoyed meeting Chris, and kept wanting Chris to hold him and play with him, pretty neat. Have a good week, we are bachelors this week as Jen is in Miami for a work conference. Clint
|
|
|
Post by Evans Dad on Oct 18, 2004 11:08:23 GMT -5
Bump - Just sending it to the top since it is this Saturday.
Clint
|
|
|
Post by Evans Dad on Oct 15, 2004 8:11:54 GMT -5
Just wanted to let everyone know that we are having our Buddy Walk next Saturday.
Anyone around our area that is interested in comming let me know. We will be starting the walk on Saturday Oct. 23rd at the new River View Park in downtown Shreveport. Registration starts at 9am the walk at 10am, and then lots of fun activities after that. Chris Burke will also be in attendance for the walk, and then entertainment with his band after the walk.
If you are interested and need more information, email me at swanny297@yahoo.com
Have a great weekend, hopefully some of you can make it to our walk.
Clint
|
|