This is mostly for other CDH parents. Family and friends are welcome to read on. It might not be that interesting and I don't have any pictures today.
Ruby has speech and physical therapy once a week at Dell Children's Hospital. Speech is to help with the PO feeding (some places an OT will do feeding). Physical Therapy is for developmental delays and torticollis. We have a script from her doctor(s) ordering once a week visits. I HATE taking her to the germ infested Children's Hospital. Plus we are in Texas which is close to Mexico, which is where swine flu came from. Don't laugh, my mind can have Ruby back on ECMO in 2.5 seconds. I'm really not up for any, "you're over reacting comments." I have us on a waiting list for home visits, but it's a LONG list. They said 3-4 months. I also have signed Ruby up for the Early Childhood Intervention Program through the State. ECI does home visits! The catch is ECI only wants to come out once a month. EVEN though I have a script for once a week therapy. Also, I'm not supposed to do both the hospital and ECI. Which we are doing this week simply becasue I called ECI to get the ball rolling while we were still in the NICU and her first session will be this Friday. ECI also doesn't have a dedicated Speech Therapist for eating issues, at least not in my zip code. This all of course is going by what I understand. To add to the confusion, our doctors have repeatedly told me to "just do both." I'm at a loss for what to do. I don't want to make any agency upset or brake any rules. I also want what is best for Ruby. We have given her nothing but the best so far and I don't intend to stop that now.
I know programs vary by state, do you use the available government program? I know it's a balance between getting sick and getting her the help she needs. Do you do private therapy at home or do go hospital or treatment office? Our health insurance covers the PT and ST. Money (thankfully) isn't an issue.
Other than Ruby taking absolutely nothing by mouth yesterday. This week has been going pretty good. She seems to be a little congested, but nothing serious. She's taking a bit more by mouth today, but no where near the amounts she was taking last week. I already have a call in to her pediatrician about changing her feeding schedule. If the trend continues this afternoon I plan bringing it up when they call back.
Hey Hollie....glad to hear
Hey Hollie....glad to hear the ball is rolling with Ruby and her therapies. Like you, I HATE the thought of taking Jaime out of the house because of germs (I write that as I sit in the step-down unit with Jaime who now has germs...ARGH). Anyway, unfortunately, we, too are doing both state and private therapy. It's what Jaime needs...the state cannot provide us with as much, as they are only once a month like yours.
Good luck with your therapy...
Sheryl
P.S. When I take Jaime to therapy outside of the home, I bring Jaime's own toys and blankets...just a suggestion. :-)
Hi Holly & Chris, We have
Hi Holly & Chris,
We have not written on here before, but we have been following Ruby's story since April. That is because we too are CDH parents and our son Carter was actually born about 2 1/2 weeks after Ruby. He has had complex issues associated with his CDH and is still in the hospital nearly 5 months later. We have found inspiration in so many CDH babies, Ruby included, who have overcome many major issues (such as ECMO) and have thrived to go home.
We hope we can one day go home as well...but for now we enjoy reading up on the successes and some of the joys we can look forward to one day.
We noticed the Trost family posts on here...we spent several months with them here in Cincinnati and they are good people. Their little boy Jaime is a fighter and a cutie.
If you are interested in reading up on Carter at all, you can visit his CarePage at: https://www.carepages.com/carepages/Adler
Take Care,
Carrie & Jeremy Adler
I totally feel for you on
I totally feel for you on this one Holly! I'm going through a similar situation right now with Braden. I took him to CHOP's feeding clinic in August and they recommended behavioral therapy with a psychologist or CHOP's feeding day hospital (every day for four weeks from 8:30-4:30). The waiting list at CHOP was so long so I started to do my homework and contacted early intervention. Braden qualified based on his feeding delays (he is not delayed in any other area). However, they do not use the behavioral model that was recommended by CHOP. They do have speech therapists that specialize in feeding. I simply can't get him to CHOP once a week but I'm nervous to use early intervention because they do not use the same techniques. He will be starting soon with the early intervention therapist and if I don't think it is working I will most likely try to find a private therapist that uses behavioral techniques. I do like that the therapist will come to the house. I'm pretty sure I could take him to CHOP and do early intervention if I wanted but CHOP would have a fit (for obvious reasons) that we were using another technique. I guess that is something to consider. Good luck!
Karla
Holly, we have therapy
Holly, we have therapy through the State with Sooner Start here in Oklahoma. Weston only has OT right now and she comes to our house once a week and she works on everything and also is in touch with the other therapist so if we might need a Speech Therapist she can get us in contact with one. I understand getting Ruby the best care and especially keeping her home especially this time of year. I like you don't understand why you can do both especially if the state program will only come out once a month and Ruby needs it every week.
This time of year is hard, it is hard for me and it will be Weston's second winter, but he has also caught pneumonia and RSV so I understand your fears.
I will be praying that you can get the care that Ruby needs and not have road blocks in the way. Praying for Ruby to stay healthy. Good luck on the PO feedings, she'll get it. Hope this helps if you have any questions let me know.
Jenny
For us, Early Intervention
For us, Early Intervention did not work out. They came for the first visit, and determined that Carter didn't need therapy. Even though we had a script from Duke. Even though he had a feeding tube sticking out his nose. Even though he vomited with every feed, was months behind on motor skills. Blah, blah, blah. So, we set up private OT and PT through a fantastic pediatric practice that's an hour away. They are wonderful and understand our situation. Carter's appointments are set up so that he does not go when school kids go (early morning and anytime after 2pm). When we get there, we go to the staff parking lot around the back, call inside and they let us in the back door straight into our therapy room. We leave the same way. Everything he touches is sterilized and in the beginning (when we were much more paranoid) they let us bring and use our own toys, spoons, etc. It's worth the drive and insurance co-pay to keep him safe.
If you have more detailed questions, feel free to email me.
Good luck! I think taking her to see a therapist is very important. While you can do some of the therapy at home, you need to be "mom and dad" and let the therapists do their work. Plus, they are the only ones who can note subtle changes and have experience in why she might be doing this, or that. Just my two cents.
-Kellie
http://bradandkellie.blogspot.com
Holly and Chris - if you've
Holly and Chris - if you've got a video camera, tape a session at the hospital, and then maybe just take over that job and skip the hospital visits. I'd recommend taping the in-home ECI sessions as well, not to replace them, but so that you can reinforce and supplement what they do.
Also, ask tons of questions of the ECI person. It could be the ECI folks don't all have eating issues, but I bet the person who comes to your house can ask someone else at ECI, so that you at least know the types of exercises needed. Our experience with ECI and Sam was very good, and they were very patient with all the questions we had.
And Anneth would agree with you about the less-than-ideal environment (germ-wise) that you get at any hospital vs. being able to control your environment at home. Until Sam had his tonsils and adenoids removed, any sniffle he got led inevitably and almost immediately to his turning blue and us dialing 911. You'll have plenty of time when Ruby's bigger to let her get exposed to germs!
Good luck, and it's always great to see Ruby's progress!
John, Anneth, and the boys