The Million Dollar Question

Ever since Dade was taken off the ventilator, CPAP, and changed to oxygen we have wondered, along with everyone else, how long he will have to wear it.  Dade is only on 0.5 liters of oxygen which is a very small amount, but enough that it gives him that little bit of extra support when he needs it.  November 17, we had our check up with Dr. Lazono.  He is our pulmonologist at Children's and he is amazing! We loved him and his staff.  They were very thorough and have a whole-team approach.  We met with his respiratory therapist, nutritionist, nurse, social worker, went to X-ray and had labs drawn.  It was a 4 hour visit, but we felt like all bases were covered.  While we were in his office, the therapist took him off of his oxygen for about an hour.  Dade's oxygen saturation levels stayed between 95-100% without the oxygen! We wondered if he would start weaning him off that day, but with cold/flu and RSV season here and for a few more months, he wants Dade to stay on it.  We go back to see him in February and if he is still doing this well, we will have the oxygen just at night and then be off!

November 18 we went to see Dr. Anderson.  He is our beloved surgeon that we have grown close to.  He was very pleased with Dr. Lozano's report and with Dade's progress overall.  His surgical scars are healing nicely and his lungs sounded good.  One thing we have learned is that the doctors really push for nutrition and weight gain because if he is gaining weight, that means he is also building lung tissue which we desperately need.  Dade's xrays didn't show a substantial difference and the doctors say that they won't "look good" for a long time.  They have taught us to look and listen to Dade to know how he is, not to just look at the xrays.  We will also have a follow up visit with him in February.  Before leaving, I finally got a picture with Dr. Anderson and Dade.  He is a big part of our life and got us this far. It was good to see him again and hear the good report! We got to see some very special people that love Dade so much!

Last week we met our new pediatrician, Dr. Jeff Stone.  He is at Greenvale Pediatrics in Hoover and we LOVED it there.  We switched offices due to an insurance issue and we felt very much at home there.  Dr. Stone knew Dade's history and we felt so comfortable with him and his staff.  He said words that were music to my ears! He said that Dade was doing great, he wanted us to try feeding him, and most importantly, "I'm going to treat Dade like a normal kid!"  Yes, we all agree we have to be extra careful where we take Dade, who he is around, and carefully watch his breathing.  It was just wonderful to hear he is doing normal things, gaining weight, and right on track! He has come so far and there isn't a day, even when I'm up all night, that I don't rejoice in Gods gift to us.  Once we got the green light to try foods, we did! Last week Dade ate sweet potatoes and yesterday he tried carrots.  Carrots may be the winner! MawMaw, DJ's mother, is caring for him this week while we are at work.  She gave them to him for lunch and he sure seemed happy about it! I gave them to him tonight and he couldn't get enough! I'm hopeful that with increased intake, he will have increased sleeping. Please Lord! He is still up every three hours most nights.  It makes it tough to get up for work the next day, but again, I'm just glad we are home with him and that he is right down the hall! I also thank the Lord for the fact that he likes to eat and take his bottle.  It is very foreign for CDH kids to do so well with eating/drinking and he certainly hasn't missed a meal! He is up to 13 lbs and 24.5 inches long.

This morning, Dade's physical therapist came to visit him and work with us on ways to help him.  She was impressed with a lot of things he is able to do.  He certainly needs more core strength and head/neck strength.  We are increasing "tummy time" and she showed us easy things to do with him that are very helpful.  She will be coming once a month for now.  As we meet our goals, we will set new ones until we feel like Dade has reached his full potential.  If he needs other therapies, speech or occupational, they will be added by referral.

DJ and I are back at work and it's going well.  I've actually enjoyed getting back into the swing of things and somewhat of a routine.  If we could get Dade resting better at night, we would really be in a good routine.  Both of our mothers are caring for Dade while we are at work.  We are so blessed that they have made this possible.  We wish you a VERY Merry Christmas! We love the Christmas cards and hearing from you. Ours will be a little late, but they're coming!