More News

Dr. Wood called today...we have to repeat the lactic acid blood test again. We'll do that tomorrow. Please say a prayer for an easy time.

Ms. Anne Nador, the Early Steps evaluator came to our house this evening to evaluate Lydia to determine if she will qualify for services. She feels that there is a need...especially with her medical concerns. She thinks that she would most benefit from an OT or speech therapist who specializes in oral motor issues. OT would probably be better because they could address some of her other concerns too. Ms. Nador felt that Lydia's muscle tone was low...though most other specialists have not seen that as a huge issue for her. She thought it was good that we are getting the ball rolling so early, and even if all other symptoms disappear when the reflux disappears...we'll just stop therapy if she starts to develop normally. It doesn't hurt anything to get her some help now...either way.

OT Appt

Lydia saw Teresa, OT today at Woman's Center for Wellness. We learned lots of exercises to try with her to strengthen her mouth...soft palate and tongue so that she can make a better seal and suction when she eats. She also noticed that Lydia's lower back seemed tight, probably because she hasn't yet spent a lot of time pulling her head up when she is on her tummy. She showed me how to stretch her back and her hips to help with that. She suggested as much tummy time as possible...the more she starts to pick her head up, the more she will strengthen her neck (among other parts), which will help with feeding. We discussed the fact that Lydia has been crying more and more when she eats again. I'm leaning towards the fact that it is reflux again and not gas. I think I will probably try to thicken her formula more soon to see if that helps and if she can still get it out of the nipple. We see Teresa again next Thursday. I also got a call from the Early Steps Evaluator a little while ago...hopefully we will be able to connect this afternoon to begin the evaluation process. Dr. Wood called last night to let me know that he had not gotten in touch with Dr. Superneau yet...he didn't want me to think he had forgotten...as if??? I know he is always thinking about Lydia...her chart is always nearby...I know he wouldn't have forgotten. Hopefully we'll hear news from Dr. Superneau soon about the lactic acid elevation. In the meantime, she is still alert and content more...usually only cries when she eats... :( Her tired cry is short-lived and she usually goes to sleep well. I just hope that she starts to sleep thorugh the night soon. I'm running on low fuel lately. She had 2 good nights that she slept the whole night...but back to her usual routine now. She wakes somewhere between 1 and 4, and she's usually up for about an hour...not too bad, considering how far we've come.

Appt with Dr Alonso

Lydia saw Dr. Alonso this morning, and we didn't really get any new information. She was happy with the amount of weight she gained since her last visit...a full pound in less than a month. She was also happy to hear that she is taking 4 oz at every feeding. She encouraged me to give Lydia as much as possible...try to increase to 5 oz when possible and try to increase amount of oatmeal to see how she does. She already does sometimes take 5 oz, so I will continue to offer it to her when she seems hungry enough for it. Most of the time, though, she finishes the 4 oz just under the wire (30 minutes) so I don't give her any more. Thirty minutes has been the max feeding time suggested because if she eats for longer than that, she burns more calories than she takes in. I don't think I'll try to increase the oatmeal just yet...I want her to be successful at eating for a little while longer before I shake up her world again. We are scheduled to see Dr. Alonso again in January.

Elise's last day of therapy for the semester at LSU:
Our finale meeting today went well! Elise's therapist, Megan, showed me lots of data that she collected during the semester. She tracked Elise's immitated words and spontaneous words throughout the semester. She graphed that Elise uttered 48 words spontaneously during her sessions. 48 words on her own!! I was amazed. I had to ask to clarify a few times because I could hardly believe it. I know that Elise says immitated words a lot, but I was impressed that she used 48 different words spontaneously. She didn't add up her immitated words, but that number was significantly greater. Elise met many of Megan's goals for her for the semester, and some goals will transfer to the new therapist that starts with her in January. I also inquired about some sounds that she said she was working on with her.../b/ /p/ /m/. I told her that she once used those sounds a lot, but I now I don't hear them as much. It bothers me when she loses sounds and/or words, but the supervisor Ms. Kauffman was not discouraged by that. She said that as Elise experiments with different new sounds and words, she will say others less but it doesn't mean that she has lost them persay. I asked how long that would be considered appropriate, but she didn't want to put a time limit on it. She said we should work at Elise's timelines. So...some good information, and some advice to just keep trucking on the way we are. Megan gave us a "break packet" for us to work on during the semester break. So, we'll become the therapists for a while. Also, Suzanne, Elise's Early Steps therapist, may try to see her twice a week in the interum.
A celebration: Elise always sleeps with a book in her bed each night...in the mornings, she usually hands it to me to pick it up. Yesterday morning (and today), when she handed it to me, she said, "book up." It is not very often that we hear her put two words together. It is exciting to celebrate all of the little steps along the way to developing her language skills!

3 month Check-up

Lydia had her 3-month check-up this morning with Dr. Wood. 9 lbs. 13 oz. Not as much as I expected, but we'll take it. Dr. Wood checked back and she has gained a full pound in 25 days. He said it is slow-gaining, but it is gaining nonetheless, so we are pleased. She has not fallen off of the growth chart, so that is encouraging. Her height, weight, and head-circumference are all still in the 5th percentile. He was encouraged by my report....smiling and cooing more, though he didn't seem convinced that she is "caught up" yet. He commented that her head control looks a lot better and he thought her tone looked much better too. I told him about the excessive stools, so he checked a diaper...he said it looked like a normal stool. He thinks she is stooling more because she is eating more. He did already get the results back from the lactic acid and pyruvic acid tests. He doesn't really know how to interpret the results, so he'll pass it along to Dr. Superneau...but, he did tell me that the lactic acid was more elevated than the last time and the pyruvic acid went down. I'm not sure what it means, but I know that he told me last time that if both levels rose together he would be less concerned. Since one went up and one went down, I assume that will lend more valid information. Dr. Wood was going to call him, though he expects it to be a couple of days before they actually connect. Our appt with Dr. Superneau is a couple of days after Christmas, so I know we'll know more then. I'm hoping that Martin will be able to come too, since he'll be out of school. We may get some enlightening news. Until then, Dr. Wood suggested that we keep "keeping on."

Lydia's Update

Lydia is still doing well...eating like a little piglet. Yeah! She is now up to 4-5 oz. per feeding. I still haven't figured out what is making her cry while she eats so often. She has also been wearing out her diapers lately...8-10 poops per day. I'm going to ask Dr. Wood about that tomorrow. Also, her congestion has seemed to move to her chest. It seems to also be getting better too though. Fewhh!! It has been so fun to see her coo and smile. She is happier some times than others...like all of us, I guess. It seems to be triggered by our interaction with her lately...not 100% about that, but I'm more encouraged than I was a few weeks ago. Also, today I tried to use the bottle to see if she was tracking with her eyes. I held it in front of her, then I move it slowly left and right. She followed it every time...a little slow to get there, but she did it. That's encouraging.

Upcoming appointments:
Tuesday- Nov 27- Lydia- Dr. Wood 9:30 (3 month check-up) I am expecting at least 10 lbs.! We'll see!
Wednesday- Nov 28- Lydia Dr. Alonso 8:45; Elise- speech (last day for this semester) 10:30
Thursday- Nov 29- Lydia- OT -Theresa Miller 10:30
Friday- Nov 30-Elise- Early Steps Speech 9:00
Monday- Dec 3- Lydia- Dr. Williams (Opthamologist) 8:00; Lydia- PT -Susan Ducote- 9:30

Thankful!

Oh...how very thankful we are! I feel so very lucky this year to be surrounded by such love and to have such a wonderful family. God has been so good to us. So many gracious people have offered their support, help, love, and prayers. And so many of those prayers are being answered every day. I can't tell you how happy I am and how blessed I feel. Take a look at some of the prayers being answered...smiles...trying to hold up her head...and sisters that love each other so much! What fun!

Fwehh!!

We went for the blood test this morning, and it was much easier than expected. I was wrong about not being able to have the tournequet on for the test...that was the lactic acid; the test that needed to be repeated was the pyruvic acid. The lab tech got it in one stick...big thanks for all of the prayers...I know that's the only reason it was so much easier.

Something a little irritating though....the tech called the lab where the test is done to be sure that they followed protocol to make sure that we wouldn't have to do it again, and the real reason for the repeat was revealed: the people at the lab spilled some of the sample last time and didn't have enough to complete the test. It had nothing to do with being frozen or anything else like the lady had told me on the phone yesterday. That could really get to me, but I'm going to choose to let it go...it is over and Lydia is fine.

Last time we had these tests run (when Lydia was in the hospital), the results took a couple of weeks. I assume that the same will be true this time. I will definitely post when I get any information about it.

Happy Thanksgiving to everyone!!