Celebrating the improvements

A couple of weeks ago, I was feeling discouraged and talked to Susan (PT) about it. I just felt like we had been working with Lydia on the same thing for quite a while without reaching that goal: picking her head up in prone position. Stephanie told me that I should think about all the things that she has accomplished...that has finally soaked in, and I am remembering where Lydia started and feeling grateful for how far she has come. Stephanie suggested that I keep a list of all of Lydia's improvements to help keep the positive attitude. Here's my list:
-better head control; she holds her head up for short periods when she is vertical (on a shoulder or sitting position)
-smiling!!
-cooing!!
-cackling!!
-picking up her head in prone position 4 times! She has not mastered this skill, but I have seen her do it on 4 different occasions...half of those times has been right after a massage...that can't be a coincidence.
-eye contact; It is now unmistakable...I wasn't sure for a while, but now I feel the connection between her and me when she is looking at me.
-much stronger suck; I was so relieved when we were able to switch to a real nipple (not cut by me)...we are now starting to draw back some of the mouth support that we were giving to help her to suck better...she is doing so much better on her own.
-so much more relaxed and happy; This has been the biggest blessing! We remember that it wasn't so long ago that we knew if Lydia was awake, she was crying. There was only one position of comfort for her: lying on her stomach on my chest. When I think about those days, I can't help but feel so incredibly thankful for the smile that I see on her face now.
-no more infantile spasms
-interaction with others; It is so much fun to see her respond to other people, especially her sisters. I remember when she would sort of freak out when they would even get close to her. She couldn't stand sudden movements, loud sounds, abrupt touches, etc....all things that made her not so happy to be around her sisters. Now her face lights up when Audrey starts to talk to her or sing to her. It is awesome!

So much to be thankful for!! Thank you for your part by offering your prayers and support!

OT Visit Today:
It was great!! Teresa fed Lydia first when she arrived...Lydia took a few little breaks (dozing off sometimes), but still finished the 4 oz in about 20 minutes. Then, Teresa was able to get some really great work in with her...the first time in a long time (Lydia's been so sleepy the last few times). I told Teresa that I've noticed when I work with her that it helps to give her short rest periods (even as short as 1-2 minutes) when she starts to cry. That's what we did today, and it really worked. After each rest, she would get happy again and tolerate more. Teresa suggested putting her in a sidelying position sometimes to help orient her with her midline. We did it a little today, and she didn't seem to mind very much. I was really impressed with the way that Teresa was helping her to roll over...Lydia did much better than I expected. Teresa said that Lydia was doing about 50% of the work ...Wow! We also talked about starting her on some vegetables...can't wait! I have some squash that I think I'll try with her tomorrow. I hope she likes it! She's been doing so-so with the oatmeal by spoon...it just isn't fast enough for her. I usually have to give a few spoonfuls...then let her have about an ounce from a bottle in between. It is still not her favorite...hopefully the new flavor of veggies will help.

Still no word on the pyruvate...I called Phylis (Dr Hollman's nurse) today and she said that they haven't gotten any faxes about Lydia. She was going to call the lab to be sure that the results weren't available...she never called me back, so I assume that they weren't in yet. I'm not really surprised...the first time we had these tests done, they told us it would be about 3 weeks before we got the results. We ended up getting them in about a week, so I was really surprised when she called with the lactic acid results last week. I'm expecting to hear in the next few days. I know that everyone is as anxious as I am, so I promise to get to the computer as soon as I can.