Appointments...

Conference with Ms Meg (Elise's speech teacher at BR Speech and Hearing)-Tues:
She said that Elise is doing very well...socializing well with the other kids. She said that Elise is probably the best of them all with trying to relate to and communicate with the other kids. Wow!! What a change from her disposition at Mother's Day Out?!? I think it makes a real difference that she feels that she is on the same level as the other kids there. Ms Meg said that she can only understand what Elise says if it is in context or if it is an immitation...not much of a surprise. I explained some of the tricks that I've noticed with Elise...hopefully that will help...one basic rule is to ignore the initial consonant sound because she almost always replaces it with an incorrect sound. That helps to figure out what she is saying sometimes. Ms Meg felt that they should continue to work on building language and vocabulary with Elise at school, which will balance nicely with Suzanne's new articulation therapy. We will lose Suzanne in August because Elise turns 3, and Early Steps ends at 3 yrs. old. So, Ms Meg and I also discussed the possibility of adding individual therapy for Elise there in August...if we don't get therapy from the school system. We'll have to make that decision soon.

Audrey's Swimming Lessons:
Going well! I think she is enjoying it...we stayed and watched today...she didn't seem very nervous at all...she did great! Elise and Lydia did well, watching too!

OT with Teresa:
We had our last visit with Teresa yesterday. She will not be seeing Lydia anymore because the drive for her is too much, especially with her family's demands of the summer. We are so thankful to her for all of the help, advice, prayers, and commitment that she offered to our family. Though we hate it, we understand that she has commitments to her own family too! :) Teresa has always been very good at pointing out Lydia's accomplishments and how far she has come. Yesterday, she talked alot about how Lydia has changed since we began seeing her. It is really nice to think about her progress...it makes me really proud of her! Beginning next week, we will see an OT at Neurotherapy Specialists....where we see Susan for PT...we will start with Terry probably on Monday. We will probably also start Speech for Lydia through Early Steps soon...after our Early Steps meeting next week.

Check-up with Dr Wood Today:
Can you believe that Lydia is already 9 months old?? I can hardly believe it myself! She, of course, did not reach any of the 9 mos. milestones, but we did share with Dr Wood that she is picking up her head a lot better. Her measurements: 14 lbs. 11 oz.- below 5th percentile; 25 inches long- below the 5th percentile; Head circumference- 15 3/4- 15 7/8 inches- still off the chart (below the 3rd percentile)...but, he noticed that it was not continuing to fall on the chart...from the last head measurement, it actually went up just a hair. That's encouraging. Dr Wood was very anxious to hear the news from Atlanta, and he raved, as he always does, about how cute Lydia is. She is usually a ham for him...she actually laughed when he checked her ears today.

Today marks the 10-week point from Lydia's biopsy....please continue to pray for her and all of us as we receive the news of her diagnosis.

Great Weekend

We had a great time swimming at Grandma and Paw-Paw's house yesterday...a real treat to kick off the summer! Audrey started swimming lessons this morning...I realized yesterday at Grandma's pool that I have really overdone the "water safety" talk. All Audrey talked about was drowning, and she was afraid to do almost everything because she thought she might drown. She did loosen up after just a little while, but she told me today that she was scared at swimming lessons. I like her to have a little fear or respect of the water, but I don't want her to be petrified. I think that she will do fine after she finishes her swimming lessons...she'll go every day for the next 2 weeks. We have a pretty busy week.... along with her swimming lessons, Audrey has gymnastics on Monday evenings. Elise has BR Speech and Hearing Tues and Thurs...plus Tues is my parent conference with her teacher and Thurs is her "end of the year" party...although she will have a summer session too. Lydia has OT with Teresa tomorrow, a check-up with Dr Wood on Wed, and PT with Susan on Thursday...then we have an Early Steps meeting on Wed afternoon, and speech with Suzanne on Friday.

Martin's summer began today...which only means that a different phase of his job begins...coaches don't get much of a summer off. He starts his basketball camp this week...and his summer league basketball team and weight-lifting for the team, which lasts all summer. But, we are all thankful for the time he gets to spend with us in the mornings. I will also be working 9 days of the summer for different technology trainings for WBR...Martin will keep the girls for most of that time.

As I'm sure many of you realize, the time is drawing near for us to get news from Lydia's biopsy. The expected time frame was 8-12 weeks, and we are well over the 8-week mark. It is on my mind now more than I realize, I think, now that it is getting so close. I actually went to the Medical Neurogenetics website last week to look at some of the different mitochondrial disorders...I don't know why...maybe to prepare myself? It's not like I could make a diagnosis myself from looking at all of the characteristics of each...the neurogeneticist himself couldn't do that without taking the biopsy! I realized I was really wasting my time. When we actually get a name, then I'll do lots of research to help to understand it and to gather questions to ask the doctors. I'll try to update as soon as that information is made available to us.

Lydia is still doing great! Her tummy time is so great these days! She's been tolerating time in the pink chair from Paw-Paw...not sitting up so great in it, but not crying...that's improvement! Her feeding is super! She is starting to interact with toys more...it is so exciting to see her look at a toy and purposefully reach for it. She's been fun...and such an easy baby! She hardly makes a peep sometimes! I guess God is giving us (and her) a break....she cried so much for the first few months of her life. It is wonderful for all of us to see her happy and content for most of her day.

Thanks for your continued prayers.

PT this morning

PT with Susan this morning went great! Susan liked how relaxed Lydia's back was today....not so curved and tense as it has been lately. She was doing some really good supported sitting...so that is our homework...we finally get to really use the cute chair that Paw-Paw made for her. Susan thought Lydia wasn't ready for it for a while...now she's ready! Can't wait to see how she does! We're going to also continue working on tummy time and some other things...lateral weight shifting- sort of like assisted rolling, without the actual roll- giving her some practice shifting her weight from one side of the body to the other. Audrey was with us today...she had a great time playing with the toys during Lydia's therapy. Elise had school at BR Speech and Hearing.

Splash Day at Audrey's school went great yesterday! Audrey had a ball...slip&slides, inflatable slide, baby pools, sprinklers...the works! Elise could have done without the "splash," but she had fun with the bubble wands...and of course, the snacks! It was fun! The video of pictures came out good, and all of the parents loved it. Audrey's teacher surprised me with a big thank you...dinner and a movie gift cards with lots of popcorn and movie candy decorated so cute in a popcorn tub. So much for "volunteering" my time....but, it was very sweet of her.

I got Elise's 1508 eval report from EBR in the mail yesterday. She qualified for speech services (which we already knew) ...I think her expressive speech fell at the 13 month range...but, that doesn't necessarily accurately represent her communication since they were only with her for about 30 minutes and the tests are not necessarily always purely accurate. A surprise to me was that the communication board eval showed that they did not recommend a communication board for Elise. They stated that therapy and modifications already in place should continue, and they also listed some suggestions for encouraging speech at home. I wondered if my resistance to the use of the communication board was the reason that they chose not to recommend it for her or not...who knows? I don't think she really needs it anyway. We are communicating with her just fine, and it gets better and better every day.

Check her out!!

This was after Lydia's massage the other night. I always try to do some therapy with her after her massage...when she's loosened up a little. This was the first time I was ever able to take my hands off of her while holding herself up on her belly! It was so exciting! Martin and I were both snapping pictures of her and cheering her on! She even made it look easy...she kept herself up for a long time. She, of course, needed breaks every few seconds...but, then when I'd put her back up, she would do it again. She was even trying to pick her bottom up in the air and move her legs to crawl. I could hardly contain myself! I told Martin that I wished Susan was there because I didn't really know where to put my hands to help her, but I wanted her to get some positive feedback from what she was trying to do. Yippee for Lydia! She even tolerated tummy time on a boppy-like pillow for a long time yesterday...she usually cries after just a couple of minutes. I think it is getting easier for her. I am so proud of her! Here she is on the pillow yesterday:

Lydia did not sleep well at all last night...it was just like a couple of weeks ago when her congestion was so bad....I finally figured out the problem this morning. I think she is cutting 4 new teeth....yes, 4! And, she just got her first two last week...which I figured out was the real cause for her not sleeping well then. I'll be a little more proactive tonight with soothing measures so that she can rest (and the rest of us can too:). She also has a little teething rash on her face. I was a little nervous at first that it might be a virus, but I think it is just from teething. She doesn't have any other symptoms.

My little Elise is talking up a storm lately!! She is using more two and three word phrases...I think she feels more confident that we can understand what she is saying. We are still working on getting her to imitate the correct beginning sounds of words, but she is becoming a little resistent to that...it's not fun anymore. Suzanne and I talked about it last week, and we decided that I can demand it from her when she wants something (more, milk, ...) .I can demand that she look at me and imitate the sounds that I already know that she can say. Otherwise, I'll just keep it light...I won't demand that she always look at me and pronounce the words correctly. I think she feels like it breaks up the continuity of our conversation...and sometimes she doesn't want to do it because it is just too hard. We all know how that feels...when something is hard for us, sometimes we feel like putting forth the effort...sometimes not.

Audrey and Elise are really becoming quite a pair lately....typical sisters, sometimes fighting, sometimes playing together. It is interesting to watch. They love to sing and dance together. This weekend, I woke up to them singing, "Hit the road, Jack." It was so cute....Elise would chime in on the last word of every line...right on cue...she would anticipate it ahead of time. They both have some pretty cute dance moves too...I'll have to take a video of it soon. :)

I've been hard at work lately on creating a video presentation of the pictures that Audrey's teacher took of her class this year....all 798 of them! I did have to weed some out...it was quite a task...but fun, especially to see the finished product...a 20-minute video. We will go to Audrey's school tomorrow for her last day- Splash Day - and show it to the class...we'll also give copies to each of the students. Elise gets to come with us and splash around too! I think it will be fun! Lydia will stay home with Ms Pat. I have been very encouraged lately by her eating...still eating very well...and feeding for more people than just me! Yeah!! Her weight is 14 lbs. 9 1/2 oz....not much gain lately, but she still looks good...plenty fatty tissue... so I'm not going to worry about it.

Two Teeth!!!

Exciting news...Lydia got her first two teeth today!!

She seems to be feeling a little better from the congestion...still not totally gone yet.

We had a great time at Papa's last night meeting and visiting with lots of relatives from the Blanchard family (Martin's Dad's Mom's family...got that??) It was lots of fun!

We are going tonight to see Grandma receive an award at her school, Brusly High, for all of the hard work and effort that she contributes to the athletic department. We all know that she deserves it! Can't wait!

Endocrinologist appt yesterday:
Dr Lutfallah said again that she expects that Lydia will outgrow the problem with her thyroid...but she will continue to take Levoxyl until she is three years old because we don't want to risk her brain being more affected if she does really need it.

OT yesterday:
Teresa was able to get Lydia to take all of the fruit that I served for her (about 1/3 of a small jar). She also fed her a bottle and noticed that Lydia is now getting milk more efficiently because she is drinking it faster...but, she is still sort of chomping on it, rather than really using her suck pads in her cheeks effectively. She still needs work with her mouth and her suck. We will soon be adding speech services...we are in the process of setting that up now.

Appt with Dr Hollman

Elise saw Dr Hollman today for her semi-annual check-up. Dr Hollman was very pleased with Elise's progress and the amount of speech therapy that she continues to have. I explained Elise's "rules" that we have determined, and she thought it was very "odd." I told her that Elise has baffled us all...she's even called "a research paper" by her speech therapist. But, I also told her how proud we are of all that she has accomplished and how far she has come. She seemed to share the same pride about Elise. She said that her low muscle tone was still very apparent, and that it just might be "her." She said that some kids with low muscle tone seem to "grow out of it" or get more tone in their muscles with age...she doesn't think that this will be the case with Elise...but, it is also nothing to be concerned about. We talked again about the need to prepare for reading difficulties when she gets in school because..."preschoolers with language problems tend to be school-age children with reading problems." We'll cross that bridge when we come to it. I told her that now that we have Lydia, Elise's issues seem so minor to us. She agreed that Elise seems a lot like a typical 2-yr old.

I also talked to her about how Dr Shoffner said that after we get Lydia's diagnosis, we will then be able to test Elise (and maybe even Audrey) for some of the same issues. She seemed a little skeptical about that...she said we should probably meet together to discuss the goals before going into a huge testing spill for all of our kids. She said, "You could drive yourself crazy with that....you, yourself could have some problems that may develop in your 80's or something, but do you really want to subject yourself to all of that...you could really make yourself crazy." Her ideas make perfect sense to me. We will definitely have a "sit-down" with her before we get into all kinds of tests to discuss whether or not it is necessary...or urgent, etc.

One thing that really relieved me about our visit...I told her about the problem with our insurance company...they determined that Lydia's biopsy could only be paid at a low level because the surgeon at the surgery center was out of state. We are in the process of filing an appeal to prove that it was necessary for us to use the Atlanta surgeon. Dr Hollman said, without hesitation, that it was absolutely necessary that it be done there...in order for the tissues to be handled properly...she said there was no way that a surgeon here could do it. And I realized later...the tissues were being sent to Dr Shoffner's lab for the testing...it wouldn't have made sense anyway to come back to Baton Rouge for the biopsy..then to have the tissues sent back to Atlanta to the lab. Anyway, Dr Hollman wrote a letter for me to submit to the insurance company. I've also been in contact with Dr Superneau's and Dr Shoffner's offices too to have them also write notices for us....hopefully that will help us to have the appeal approved.

Congestion..again

Life has been really busy here lately. Lydia woke up a couple of days ago with her congestion...just as terrible as it always is. She had a really hard time sleeping last night...cried for 2 1/2 hours before she fell asleep, then woke up several times during the night...so, I assumed that she had developed an ear infection since that happened the last time she had a cold. I took her to the dr this morning, and thankfully I was wrong...just a bad cold. But, I'm glad I went because we FINALLY got a decongestant prescribed for her. We saw Dr Ramey, and he said that as long as we follow the dosage directions, it is perfectly safe to give her a decongestant...Yippeee! Hopefully, this will help her to feel better soon. Luckily (and gratefully) she is still eating well, despite feeling so crummy!

I'm sitting here trying to think of all the things to catch up on....it's been a while since I've posted.

PT on Thursday
Lydia got an A-....much better than last week.:) I told Susan how excited I was about the progress we've seen with the inclined mattress. I've even seen Lydia roll to her stomach on a flat surface if I just start her off on her side. So exciting!! Now we've added a new step in our inclined surface therapy....commando crawling. (Using Susan's terminology) Lydia's legs are already wired to want to crawl...she often moves them in a crawling motion...so, Susan wants to capitalize on that so that Lydia can feel some success with it. Our new homework: I put her head-first on the inclined mattress...bend one leg at the knee...hold my hand firmly on her foot...she pushes against my hand to move herself and gravity helps her to move more easily...then do the same with the other leg..etc. It's fun too! I get so excited every time she moves at all. We are also working on stretching her upper back muscles too...she seems to be getting back into the curved posture more again lately...she was seeming to do better lately. I feel like I have lots of ideas for therapy for her in every position...lying down alone, sitting on my lap, holding her upright, work on the mattress...I need to write it all down, so that it doesn't seep out of my brain, as things seem to easily do...just like any mother, I guess (I hope it's not just me. :) )
The Assistive Technology Team from EBR came Wednesday to evaluate Elise for the communication board. I'm still not convinced that it will be an asset for her, but I promised to keep an open mind...though I was openly very skeptical at the meeting. I just doubt that it will logistically work out...seems like a lot more work for me...but not really necessary. It is supposed to help me to figure out what she is trying to say...well, I have to know what she is trying to say in order to create a picture card to go with that word(s)...but, once I figure out what she is saying- then I know her "language" for that word and I don't need the picture. Seems difficult to input to me too...she has a vocabulary of at least 200 words...I don't know how I would keep track of that many pictures and keep the board updated as it should be to work properly...as you can tell, I'm not really succeeding in keeping an open mind...I'll keep trying.

When Suzanne came on Friday, we started the "new" therapy to target phonological processing. Elise did AWESOME!! Suzanne and I were both floored and so excited. I told her I had tears in my eyes watching Elise get into it so well....Suzanne said she had to contain herself from running and doing cartwheels all over my house. Obviously, it went well. She got her to say the /h/ sound in isolation several times. Perhaps, even more exciting than this to me is that I have been able to get her to use the correct beginning sounds in some words lately by giving her a visual cue. I just form my mouth in the way that the sound is made, and if she watches me, then she can do it....she can change "daby" to "baby" ; "nore" to "more"; also some other words beginning with b, m, p, and even t. This has gotten me soooo excited AND to change my "diagnosis." It seems like motor issues are more apparent since she can make the sound while watching my mouth. It started out as a game...really fun, that's how I got her hooked. Now, I am trying to make it not soo much of a game, so that we can use it in normal speech. I say, "Look at Mama, and I'll help you say ____." Sometimes she's into it...sometimes not; she's ready to get her point across without spending so much time getting the sounds exactly right. I'm trying not to push her...I don't want it to become too much of a negative thing.

Martin took the big girls this morning to Elise's library program, "Ready to Read." It's a great program for babies and toddlers...we've gone since Audrey was a baby. It is a six-week program on Saturdays in May-June. What fun! Audrey and I have a date tonight to go to Mary-Cathryn's dance recital...we are so excited. Martin will be here with the little sisters. I pray that that goes well....and that Lydia is feeling better by then.

Thank you for your continued prayers...for Lydia and our family. We thank God every day for the numerous people praying for us, and we pray that God blesses you abundantly, as He has done for us.

HAPPY MOTHER'S DAY TO ALL MOTHERS, GRANDMOTHERS, GODMOTHERS, AND MOTHER-FIGURES! MAY YOU ALWAYS FEEL THE APPRECIATION OF THOSE YOU LOVE AND CARE FOR!

Still going well

Life here still great...just busy, busy, busy! We had a fun trip to the zoo yesterday with a neighbor and her kiddos...I think everyone had a great time! My greatest recent news: I found someone else who can feed Lydia...and he lives in the same house!!! Yeah! Dad did a super job feeding Lydia Sunday evening. As most of you know, until now, Lydia has been very picky about who she chooses to eat well with (hint, hint....mostly only her mom!). Susan and I have talked lately about how she really needs variety with everything she does...she easily gets locked into "what's comfortable" when she really needs to explore more variety for sensory experiences and possibly different motor movements. It is just good for her repertoire of skills, not to mention a nice break for mom.

I've been such a forgetful Fran here lately...thanks to Martin and Dad for bailing me out yesterday after locking my keys in the truck at gymnastics. It was Audrey's first day back to gymnastics since last summer. She's been begging to do it again, so we just started yesterday. She was thrilled! Much fun!

A new day

We all made it through the entire mass today...every single one of us...Yeah!! Elise barely made it....but, she made it! Lydia did great!!! Maybe she's getting more used to it. I think she just barely took the lead for best-behaved in front of Audrey today....our biggest girl was great again! I can't say that I actually heard all of the mass today...I was too excited that everyone was doing well. Go figure....can't hear when they cry and misbehave....don't listen when they're doing well! Oh, me! I'll get there. I'm just so excited that we're all able to go to church as a family....joy in my heart!

Lydia's therapy at home...
Our latest PT homework has been so much fun...even for Lydia!! Alleluia! Therapy time with mom at home is not always her favorite. Susan told us to practice assisted rolling with her on an inclined surface. That way, we can let gravity help her to finish rolling when she gives a little effort (instead of us basically doing most of it with our hands). I start her off, then let her give a little push- and gravity helps her to finish it off. We set up an extra baby bed mattress with a pillow under one end to make the incline. It works perfectly...she loves it! And the big girls love it too! When I get her to roll to her stomach, then I help her to support her weight so that she can pick up her head and hold some of her weight with her arms...then she gets to look at her big sisters...much more exciting than any toy! After Lydia takes a few turns, the big girls, of course, want their turn to roll down the "hill." It's been fun!

Audrey...insightful
Audrey never ceases to amaze me with the insightful things that she comes up with. Yesterday, we were talking about something (can't remember what at the moment)...we didn't know what something was ( a button or something...can't remember)...anyway, Audrey said, "God knows what it is...He knows everything...God is the power of life." Can you believe that? I'm not sure if she knew what she was saying...but it was powerful! God is the power of life! Oh, yes you are right, my dear!
A little preface for the next story...we've been talking a lot lately about praying to God when we feel angry so that He can help us to stay calm. Today...on the way to church...she said (out of the blue), "I told Elliot at school the other day to pray to God so that we would not argue." I said, "Audrey, that is wonderful. What did he say?" She said, "He didn't pray or anything because I don't think he knows about God." I said, "Well, I think it is great that you are teaching him about God." How about that....our very own little evangelist!

Elisee-pooh!
She has been talking up a storm lately! I feel like I am understanding her better and better...still following her little rules. I think she feels me understanding her better too...I can see the happiness in her eyes! I'm recently trying to write down all the words she says (as much as I can practically do)...we're trying to gather word pairs and sounds for Suzanne to work on with her. It is pretty fascinating to actually see her words in writing. There are a few things that she's said that I think the average population could understand..even some two-word phrases: "did it" "dappa (apple) juice" "new diapah (diaper)" It's fun and exciting to see and hear her language evolve. I'm anxious to see how this new therapy will affect her language and speech skills.

Decisions, decisions...
Martin and I talked a bit yesterday about all of the decisions facing us about therapy and school for the girls...it seemed a little less daunting after talking about it out loud with him. He helped me to put some things into perspective. Hopefully, soon we can make some of those decisions. Please continue to pray for wisdom for us and for God to lead us to His Will for all of our children. I pray to come to decisions that "feel right" so that I know it must be what God wants.

Mom overwhelmed

All the kiddos over here are doing remarkably well!! Lots of fun!!
Lydia actually ate 4 oz at EVERY feeding yesterday...it's been a long time since she's done that! Her weight is at 14 lbs. 7 oz. (on our scale). She's looking great and seems to be feeling great! PT was not so good yesterday...bad timing. We are trying to adjust the time starting next week to see if it will be better for Lydia.

I'm just feeling a bit overwhelmed with the number of decisions that I am trying to make right now. We always want to do what is best for our kids...it would be great if we had a crystal ball to tell us what actually is the best thing. A few changes are occurring this summer, as far as therapy and schools go...I'm trying to do research so that I can make what I feel are the best decisions for our entire family. I'll give more details about all of this later....

Also, a little insurance glitch has me a little stressed out right now....trying to straighten that out too. Just since yesterday, I started having that overwhelmed feeling again... I was feeling a little too stress-free for a while I guess. I hope it is not time for news from Atlanta because I think my brain needs to get through all of this other business before I add more information to it.

Elise's speech therapy session with Suzanne was very productive this morning. After analyzing her language sample from last week, she found the same patterns that I had found...though not quite as clear-cut as I thought. Her "rules" don't exactly explain ALL of her errors, but a very large percentage. Suzanne and I are both convinced that Elise has a phonological processing disorder with some motor-planning issues....two different scenarios, but she has evidence of both. Suzanne is so funny...she said while she was analyzing the sample, she said to herself, "Mandy was right. She kicks rear end!" She made me laugh. Anyway, our plan now is to completely change the direction of therapy to less-language based and more directed towards attacking her "rules" and articulation. Suzanne said to expect it to be difficult for at least the first couple of weeks...because it will not be a fun change for Elise...she is so used to Suzanne coming with books and toys and lots of fun!...phonological process therapy is less exciting (hearing lots of words...picking word cards from a pair....not the typical fun and games that she is used to with Suzanne). I have a little anxiety about this, but not much...I trust Suzanne and know that she will make it work. It should paint a picture for us about whether or not this will help Elise and whether or not this is her main problem. We'll see.

Thank you for your continued prayers. Please pray for wisdom for me to make decisions based on God's will for us.