We've had no reappearance of the blood. Ruby's pediatrician called yesterday morning to check-up on her. I didn't realize how concerned he had been when we were in his office. I guess I was just to focused on Ruby. Plus doctors are pretty good at hiding how alarmed they are sometimes. That's my experience anyway. It wouldn't be CDH if didn't get thrown a curve ball every once in a while.
For some updates. The pulmonolgist doesn't need to see us until the spring! Woo-Hoo! That means next month we only have to see the pediatrician and the plastic surgeon. I'm so happy about this. The pulmonoligist was really happy about her breath sounds on the left. He was really pleased with her in general.
I did call CHOP to ask what if anything should be done between now and 1 year. We've had her hearing tested and a chest x-ray. Her doctors here suggested we talk to CHOP as they don't much expereince with ECMO babies. I put a call in to her sugreon but haven't heard back. I'll give her until Monday and then call again. What did other CDH/ECMO babies have tested during this time? Not being near a hospital that routinely deals with ECMO makes me nervous that we could miss something.
Ruby is getting increasingly hard to photograph as she is ALWAYS moving now. She's started to lunge at things while on her tummy. I think we are really close to crawling. Yesterday at the park she even tried to put rocks in her MOUTH. She was quick and sneaky about it. If only she would do that with food. We even did tummy time on the pea gravel. That's when she tried to crawl after one of the other babies on the play ground. I did have to be kinda mean to a little boy yesterday. He was about 5 and he REALLY wanted to be Ruby's friend. I felt bad as the little boy was so sweet. He wanted to help push her on the swing. We do have to be careful. I always ways keep her out of sneezing range while at the park. Plus she LOVES to see other kids. Even older kids. She love to watch our neighbor kids play and run around.
Here is a not so good pictures of Ruby and Chris on his birthday. I couldn't get them to both smile at the same time. Plus I had to fight with the ceiling fan for attention.
Hi Holly and Chris, I was
Hi Holly and Chris,
I was just checking in on Ruby. She is adorable! I'm glad there is no more blood. How scary! Braden had the PFT at CHOP at six months. He will go back to the PHP clinic in March when he turns 2. I certainly won't offer any advice on the feeding but know that I'm dealing with the same frustrations. I opted not to send Braden to CHOP's feeding clinic (I had him evaluated there in August) but we are doing early intervention feeding therapy at home. It's going well so far! Thinking of you and Ruby and very jealous of your Texas weather! We were in San Antonio and Austin this past summer and we absolutely loved it! Will you be bringing Ruby back to CHOP for any check ups? Just curious.
Karla
You don't know me but we are
You don't know me but we are acquaintances of the Hobbs family and have been following Ruby's story off of Andrew's blog. Just a comment about getting good pictures of kids--just wait till Ruby is walking and running. We have a 15 month old and most of our pictures of him these days seem to be blurs because he won't ever stop moving!!! At least Ruby keeps her body in the same place, for now!
It seems like you guys are doing a fabulous job keeping Ruby healthy and on the right track. I know that you guys are dealing with lots of issues that most people don't have to face, but looking at the overall picture from birth to present, at least on the blog, Ruby continues to make positive progress in every direction and it is just a matter of time before she will be where you want her to. I have read about your feeding frustrations and have not dealt with oral aversion so I won't offer any feeding advice--but just try to keep things in perspective and don't focus on the incremental day to day issues. Although rocks aren't food, maybe that's just the first step. It took my son, who has no feeding issues, about 3 months of solid food to get to a place where he regularly enjoyed swallowing it and putting it in his mouth on his own. Now, depending on his mood and many other factors, sometimes he shoves the food in his mouth faster than he can eat and sometimes he throws it all on the floor. I am sure with all your careful parenting and time that Ruby will reach her goals. In the meantime, continue enjoying the ride because soon she will be a willful toddler and you will miss these precious and calm moments of infancy!
Hey Holly, I figure I write
Hey Holly,
I figure I write and tell u bout CHOP.. Gabi did not have ECMO but they also like to perform a pulmonary function test.. but the child has to be sedated. Gabi might have it in May because the pulmonologist was not there. She will go back for a hearing test in 2 months or so she can be tested while sitting up and actually watch her response to sound ect... Gabi met with a behavioral psychologist to check her developmentally, a nutritionist and Dr Hedrick. That is pretty much it, if you have any questions you can always call me!
Happy Bday Chris!
Joanna
Ruby is just adorable! My
Ruby is just adorable! My CDHer Dakota is going to be 1 on Christmas Day. We were treated by Dr. Kays in Shands, which is 5 hours from my home so we are in the same boat as you ... our pediatrician and local people aren't very familiar with CDH. The only other test that Dakota has had was an x-ray. We did it at 8 months and now we don't have to have another one for 9 months (when she's about 1 year and 1/2), when we go back to Gainesville for Dakota's next checkup. It is such a relief when the doctor's appointments and follow ups decrease ... but it almost makes you feel like you should be doing something (like when you pack and you know you're forgetting something). I think Ruby is doing fantastic and is just the cutest little baby!
Jennifer
Mom to Dakota
12-25-2008
RCDH/ECMO Survivor