raising ladybug

Adela had her next check in with Dr Seashore on Thursday.  She was a little worked up going in (read that as really dramatically worked up), but she was able to calm herself much better than she use to.  She weighed just over 23 pounds which is a 3 and a half pound gain in a month.  This is a good sign because it means her body is comfortable sending nutrients to her body to make fat.  However she gained the weight a bit too fast for their liking so they have cut back her formula requirement.  She had a blood draw to check her liver function and blood chemistry.  She is progressing well and we are still working on managing reflux (better) and appetite.

We are out in New Bern this weekend finishing up celebrating Daddy’s 30th birthday.  Adela is doing well.  She had a bit of a clingy week, but we are continuing to work on the reflux issue.  She had a follow-up appointment with genetics earlier this week.  No new developments there, they are continuing to research and share her material with others to see if anyone has any ideas.  She has appointments this week with both her regular pediatrician and her pediatrician at the hospital.  We will definitely update about those….I know she must weigh a million pounds.  It is great to have her growing! We just have to make sure she gains height too.

She oohed and aahed the crowd out here today with her smiles and playing.  She found lots of eggs on the spring egg hunt and had fun riding in Nana’s wagon.

A big “Happy Mother’s Day” to all the Gramma’s and Nana’s and Mommies and Mommies-to-be…

Adela gave me a whole weekend of  niceness to celebrate.  On Saturday I got a nice luncheon and an all expense payed trip to the new Hobby Lobby in Burlington.  On Sunday we went to another nice lunch over at the mall and went to look at some clothes.

Adela had an amazing session at therapy today. I don’t know how to even describe it other than amazing.  She was at the OT’s gym and she did some sliding and bouncing and even some swinging!  If you know the old Adela you know that is just crazy talk.

Well, I figure I’ve procrastinated long enough to weed out anyone not really dedicated.

Adela has been doing well.  No real setbacks.  She had been having a lot of reflux flare up, but we finally think we tracked down the problem.  Sometimes her prevacid meds will lose their potency if they get humid.  When we started the new batch two days ago her reflux seemed to die down.  She still has a little during the feeding but nothing compared to before.  Thank goodness, because it was about to drive us all bananas.

She is still working on her walking…she is slowly gaining her strength back in her legs.  She likes pushing her wagons and walking around her play table.  She likes to make her wobbly sound, first developed for Boo and Baa, when she is walking .  Her mood has improved now that the reflux is better – it is amazing how much more sunny she is after all this.

We were wondering how much she remembered about the hospital.  Yesterday she was helping me clean the toy area and found her bracelet from the hospital.  She proceeded to sign “her wrist” “sick” and “away from home”.  Apparently she does, however she didn’t seem upset by talking about it and moved right on with playing.

We have  been working with her on accepting the feedings and people touching her g-tube.  We have already developed our own slang and stories.  Her g-tube is Mr. Button and he likes to be talked to.  The pole and machine are his and he “eats” special button food as opposed to “mouth food”.  Also a big breakthrough came when she decided that medicines that have to go through the med-port are Mr. Button’s drinks.  She is doing really well and actually sometimes seems to like for Mr. Button to get attention.  Unfortunately her site is a little sore right now so that doesn’t go over really well.

Again I apologize for the delay in the update.  We just celebrated Steven’s 30th and I have been working on a bunch of projects around the house for him, including a new fern/hosta garden (very proud of my retaining wall).