Fun day with the girls

It was so much fun catching up with our girls today! We had a lounging morning and afternoon...went to the mall this evening for pictures with the Easter bunny, playtime, and supper. We had a ball! The picture came out so cute...I may try to scan it soon...we were so proud of Elise...she is usually skittish with the Easter Bunny, Santa, etc. She smiled proudly tonight and enjoyed it. They all looked really cute!

Thanks so much to Allison Kirkland for our sweet surprise this afternoon...a cookie bouquet delivered for our family...we all enjoyed! :)

Call from Dr Alberty (GI):
I forgot to mention the call we got from Dr Alberty at the airport yesterday...he called us back because his nurse said that the next available appt was April 7...I didn't want to wait that long before talking to him. Side note: His nurse told me that he was really busy yesterday...scopes all day...2 emergency procedures to tend to...she said not to expect his call until Monday...I was very impressed that he called me back so quickly. Lydia is so lucky to be treated so special by all her doctors...on second thought...they must just all know how special she is! (I'm just a tad biased.)
Anyway...we talked about Dr Schoffner's suggestion for considering a feeding tube and the need to be aware of her daily caloric intake. Dr Alberty seemed to side with Dr Wood on this issue..."the proof is in the pudding" (as Dr Wood would say) As long as she is gaining weight, we know that she is getting what she needs. We knew that at her last appt with Dr Wood, she had gained 4 oz in a week. Dr Alberty said that sufficient weight gain to him is 1/2 oz per day...so, that seemed right on track. I told him that I was still concerned because she hasn't been eating well the last few days...we both agreed that some of that may be contributed to the procedure...the ordeal might make her not want to eat. Today, I have a new attitude...she is still not eating well again...taking less than 3 oz at every feeding, sometimes less than 2 oz. Dr Alberty also said that he wants to know right away about the results of the testing...he said that if she has a significant mitochondrial disorder, it is nothing to play around with. He would recommend inserting a G-tube right away...even if no feeding problems exist at that time...we would be proactive because of what would be to come. So....Martin and I talked tonight...we are ready to do it now. I think it would relieve much of the stress about whether she is getting enough nutrition or not. I will probably call Dr Alberty on Monday to get the ball rolling. Making difficult decisions is the hardest part of being a parent. You know that you are ultimately responsible for making sure that your children are taken care of and that everything is done in their best interest...sometimes it is just hard to know what their best interest is. On one hand, I want to get the feeding tube to be sure that she is getting enough nutrition...on the other hand, I don't want to rush into it if she really doesn't need it. That is why I've been on the fence about it since her last hospital stay. I was convinced then that the feeding problems were going to be temporary...I am no longer convinced of that...though I'm also not convinced that it's not temporary....you see why it's so hard??

Call from the Pediatric Surgery Center:
A nurse from the surgery center where Lydia's procedure was done on Wed called today to see how she was doing. I told her about a fever that Lydia had developed again last night...101.5 She said that if it went away, I was off the hook...but if she still had a fever this afternoon, I should call the surgeon...and then probably our pediatrician. She said that it was a long time after the surgery to be having a fever...she said to talk to the surgeon first, but it was probably a medical issue unrelated to the surgery...she thought maybe even dehydration since she hasn't been eating well. But, she has been wetting diapers. Anyway, her temp went down the next time I checked..so, I didn't make any calls. Again, we'll be watching her closely to be sure that it doesn't rise again. Tonight, it was 99.5

I don't think I ever posted about Lydia's VCUG procedure...it is scheduled for Monday. It is the test that Dr Ramey ordered because of the UTI...babies don't normally have urinary tract infections, so they ordered two tests to be sure that all of her urinary anatomy is in tact. They did an ultrasound in the hospital, and it was normal. For the VCUG on Monday, they will inject a dye into her bladder with a catheter, and take repeated x-rays as she urinates. I'm not sure when those results will be ready....I'll ask on Monday.

Ronald McDonald House:
We were really pleased with our stay at the RMH in Atlanta. The fee for our stay was $20 per day...for room and board, all meals, and transportation... for all of that, we owed a mere $60 for 3 nights and 4 days!! We gave a little extra because we felt it was worth it. The next time you are looking for a charity to contribute to, I ask you to consider the RMH... it is really a great cause. A lot of the families there had children staying in the hospital down the street...cancer patients, etc. Some kids with brain injury were there...they are transported to and from the hospital for rehab each day. There were so many volunteers coming and going the entire time. It's just a great atmosphere.