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.

Appt with Dr Wood

Ears are clear!! Yeah! He had her weight at +6 oz from her last visit 2 weeks ago...that's satisfactory...not too good, but not too bad. She was 14 lbs. 3 oz. today. She was so-so with her OT today...kind of tired and cranky, but she did ok. Teresa and I talked today about the possibility of adding a speech therapist to Lydia's care. She suggested that it might be good to get someone else in on helping with her feeding and oral motor stimulation. Then, we'll bridge to working on speech when that time comes. Teresa is going to try to hook us up with a friend of hers that would be good for Lydia.

Having a good day!

Appt with Dr Williams

Lydia saw Dr Williams (Opthamologist) this morning. She thought her tracking looked a little better than last time. She also diluted her eyes again to look for some type of pigmentation in the back of her eyes. She did find one little patch of pigmentation in one eye. From what I understand, this will not affect her eyesight at all and may not even mean anything. She said that with some mitochondrial disorders, kids will have some type of pigmentation...but usually covers the whole eye....not just one patch. Basically, usually this would just be a sign to get other things checked out...she said that mitochondrial disorders are not usually diagnosed in infancy, so this pigmentation might be a sign that a child needs to be tested for disorders. We, of course, are already in the process of testing so the pigmentation doesn't really mean anything to us right now. She wants to see her again in four months.

We also saw Susan (PT) this morning. Lydia did very well...lots of smiles...she tolerated therapy for a long time. Susan found that she spends a lot of time loosening Lydia's muscles when we start each therapy session because she is usually tense...then she has to stimulate her to use her muscles because once she gets her to relax, Lydia turns to mush. Today was a make-up session from last week, so we'll see her again on Thursday. We will soon be ordering some braces? (not sure exactly what they're called) for Lydia's feet...trying to get her feet to keep from turning out and hopefully also help to hold her big toes stay down. I had told Susan that I remember when Lydia was in the hospital last time...she had an IV in her foot, so her whole foot was taped up. Shortly after the IV was taken out, I noticed that her big toe on that foot didn't look as significantly turned up as before. I'm thinking that these new braces may have the same effectd...that's an easy-enough fix, if it helps. A few weeks ago, when Susan first introduced the idea of getting the braces for her feet, we talked about the importance of looking "cute." It is not something I had ever considered, and I kind of dismissed it at first...but, after I thought about what Susan was telling me, it started to make some sense. She said that no matter how significant the disability...even if a child is in a wheelchair, if they look cute...well-dressed, well-groomed, wearing a smile...they will get more positive attention than if they don't "look cute." And the more positive attention that they get from other people, the more social interaction they'll have...the better their quality of life will be. I'll definitely keep that in mind. It's funny...she seems like a little celebrity right now...especially when we go to Brusly. We went to watch a ball game this past weekend in Brusly, and it seemed like almost everyone there knew who she was and a little about her story...a lot of people gave her lots of attention. I told her, "I think you're a little star!"

Tomorrow, we see Dr Wood to recheck her ears...I think they'll be fine...she's been so content lately. We will also see Teresa (OT). Hopefully, she'll be in a good mood for that too. :)

Breaking the Code...

...to Elise's language. When Suzanne came last Friday, she took a language sample from Elise (tried to write down every word Elise said and the phonological way that she said it)...a difficult task since she is talking so much lately...especially with Suzanne. I also told her some of the things that I noticed with Elise's language...all her little "rules." She seemed really shocked when I told her what I've noticed...it turns out that Elise is a very complicated little speaker...Suzanne said, "She is a research paper." She seems to be making errors that at least Suzanne has never heard of before. Here are the rules that I've noted from Elise:

• She takes the last consonant sound of a word and uses it at the beginning also.
  Examples:
  hold and fold= "dold"
  down= "nown"
  bed, head, etc. = "dead"
  dog, frog= "gog"
  side= "dide"
  She does this with a lot of words! You can see how this would become very confusing...any word that belongs to the same word family is pronounced exactly the same way. I usually can figure out what she's saying in context...but if it's out of context, it takes a while (if I ever figure it out).
  
  This is the part that Suzanne described as being a research paper:
• If a word ends in /k/, she starts it with /g/.
  Examples:
  milk, book= "guk"
  back = "gak"
• If a word ends in /t/, she starts it with /d/.
  Examples:
  cat= "dat"
  seat, feet= "deet"
  shirt, hurt, dessert= "durt"
• If a word ends in /p/, she usually starts it with /b/ or /d/.
  Examples:
  jump= "dump"
  pop= "bop"
  Suzanne gave me the speech therapy lingo to go along with what I had noticed...k and g, t and d, & b and p are each sounds paired together because they are made by using the same mouth placement...the only difference is that one is voiced and one is voiceless: k is voiceless, g is voiced; t is voiceless, d is voiced; p is voiceless, b is voiced. So, what Elise does in this instance is that if a word ends in one of these voiceless sounds, she starts the word with its voiced pair. Very intriguing...and confusing!!
  
• If a word begins with a vowel sound, she puts a consonant in front...following the same rules as above.
  Examples:
  out= "dout"
  Audrey= "Daudee"
  
• She often replaces /m/ with /n/ when used at the beginning of a word:
  Examples:
  move= "nood"
  Mommy is one of these three: "Mommy", "Nommy", or "Yommy"
  
• She often deletes one syllable of a two-syllable word:
  Examples:
  Daddy= "Da-ee"
  
• She usually deletes part of a blend.
  Examples:
  tree= "tee"
  
• Her consonants of choice seem to be /g/ and /d/...if she can't make a certain sound, she usually replaces it with one of these.
  

So, as you can see...communication becomes very frustrating for her (and for people in conversation with her)....especially since she understands 100% of what is said to her. She can follow commands (2 and 3-step) very well...except of course if she chooses to be a 2-year old and decides not to do it. We have thought for a long time that Elise may have Apraxia...a problem with motor planning...getting the message from her brain to her mouth to make the sounds that she wants to make. Though we still think that this is part of the problem... it is obvious that some sounds that she can make...she doesn't use in certain words...or in certain places in words. So, a new possibility is a phonological processing problem....she has not memorized the "rules" of how sounds fit together to make words, so she has made rules of her own...which means we need therapy to re-teach her how to combine sounds to make words. I talked briefly with the supervisor at LSU about these things that I've noticed...she emphasized that diagnoses in speech should not be made until after age 3 because some of the problems you see are solved with maturation. So, I am satisfied with that...I'm sure that she and I will talk again about this in the fall....Elise will be 3 in August. Suzanne and I feel that it is not immature to begin discussing some of these possibilities so that therapy can be geared to whatever diagnoses there might be as soon as possible. Suzanne brought me some research on these different disorders, and I see more and more that Elise's is mostly a rules-based issue. The research also says that children with these disorders often have difficulty with reading when they become school-aged. This was not a surprise...Dr Hollman already warned us of this. Living with two teachers will hopefully be an asset to her if this is the case.

Audrey:
Audrey's urine culture came back negative....and she hasn't had any more accidents like that again, so who knows??
Look out LPGA!!
Audrey just began her golf lessons with her dad this weekend...she is a natural!! It is literally unbelievable...though I guess I am a little biased. Papa gave her some real clubs that are just her size, and Martin was playing out in the yard with her yesterday while I was in the house. He came in and said, "You gotta come see this." It was one of the cutest things I've ever seen. She has the absolute best coach...not to mention that he is having a ball with it...I can see the pride in his face...it is so fun to watch both of them. He taught her how to lay her club down next to the ball to get her feet the right distance from the ball...then square up to it...and hit- She actually gets some air time! Martin says he wants to play with her a little each day to help her practice...I hope she continues to enjoy it because I know he's enjoying it. We laughed today because she had her second practice and her first golf injury...she hit herself in the foot with the club. :) Ok...so she doesn't hit it perfectly every time. She was so funny though...she sat down for a few minutes, then she said, "I'm tough..I'm done sitting, I'm ready to play again." What a girl!

Lydia:
Still doing well!! Eating well...sleeping well...tolerating therapy with mom for longer periods! Of course, she chose church this morning to have her weekly crying spell...again. ..though this time was much shorter...we didn't have to miss too much of the mass. Elise and Martin, on the other hand, did miss quite a bit. Audrey got the prize for best-behaved...which won her 2 donuts after church! :)

Eight Months Today!

Can you believe it?? Lydia is already 8 months old...it is hard to imagine...though I know she has come so far! On my way to drop off the kids at school this morning, I started thinking back to how life was about 6-7 months ago...specifically my life. I really don't know how I did it....today's business seems like a piece of cake compared to life then...
Lydia was not gaining weight, so the dr told me to keep track of the amount of food she was taking in (though we are still doing this)...I had to stop breast-feeding, but continue to pump breast milk while supplementing with formula. At that time, it was taking Lydia an hour to eat 2 oz...and he wanted me to feed her every 2-3 hours. So, that basically meant that I would feed her for an hour and take a break for an hour....and somehow try to take care of two other kids, pump breast milk, car pool to and from school (which I have help with now..thank God!), and do my share of household stuff...not to mention that Lydia was waking up for 2-3 hour shifts at night....and that we were going back and forth to the dr's office almost every day to check her weight and run tests. I remember telling the dr that I didn't think my breast milk was any good because I was having trouble finding time to eat. (Boy, if I only had that problem now...I could lose this baby fat that I keep holding on to :) Anyway...I literally don't know how I managed that. I feel like I can probably handle anything now...just one of God's great lessons: the harder the hard times are; the easier the easy times are!

And Oh how proud we are of how Lydia has progressed since then. Many of you know that when she was first born...if she was awake, she was crying. It is such a joy to see her little smiling face these days! Also, she makes such a connection with us now...we can tell that she is reacting to us....not just random smiles. And her daddy is very proud that he has an extra-special bond with her...he has an effect on her like no one else...she "talks" to him every time he interacts with her...it is very sweet. She is still trying very hard to lift her head while on her tummy and sometimes does very well with that. Her head control is much better.

Just to let everyone know about her development...she is not doing hardly anything that typical babies her age can do...no attempts to roll over alone...no sitting up....obviously no crawling. She is a lot like a newborn baby in many ways. But, we find it more important to focus on the things that she has accomplished...and her smiling face and fun cooing are tops on our list!

I came across an old email from a mother of a little girl with Rett syndrome (and mitochondrial dysfunction)...she has a website www.girlpower2cure.org She's actually the co-founder of the Rett Syndrome Research Fund. I looked around on the site a little...it was very intimidating...Rett Syndrome is a very severe disorder. It solidified the fact that I don't need to do that kind of research...at least until I know for sure what Lydia's diagnosis is....she may not have Rett Syndrome at all. I was taken back by how sad and morose some of the parents were in the videos...it brought sadness and misunderstanding to me...I feel sorry for the children- that their parents are so sad about their lives. There was one video, though, that was very heart-warming....The lady's daughter, Sarah, at her school Christmas program...her mother was helping Sarah to engage in the song during the play...the look on her mother's face was pure joy and pride. I just thought, "That's what it's all about." We all feel proud of our children...whatever accomplishments they may have...large or small.

I do realize that caring for Lydia right now is very easy...she is a baby, and all babies require constant care. I foresee additional necessary care as she gets older...though I don't know for sure what that might entail, but I do realize that it may be more difficult than what we are doing for her now. So, I will continue to brace myself for that...and trust in God to lead the way and carry us through when we need Him to....knowing that God will always light the path for us makes it all so much less daunting. How lucky and blessed we are!

I went to visit the LSU language preschool today, as Ms Kauffman suggested. It started off rather awful...wrong directions from the visitor center, so I ended up in the wrong place...had trouble finding a parking space- twice. I finally did make it there...It was great to meet the director there...Laura Teague...she was very nice and very honest with me about Elise's options. Though she really highlighted their program there, she agreed that Elise is in good hands at BR Speech and Hearing and that it might be best to keep her there since she is settled. She sort of went over the pros and cons of each place with me and said that she would keep Elise at the top of her list for next fall...she'll call us at the end of the summer to find out what we decide to do. I expect that we'll probably keep her at BR Sp and H. I am very impressed with how well Elise has done so far, and I think it is the best place for her.

I also met with the Early Steps evaluator today...she evaluated Elise last week because I was trying to get her qualified for OT through Early Steps...Well, she didn't qualify for services. That's actually good and bad....it's bad because we won't be able to get an Early Steps therapist to work with her this summer...it's good because she must be doing well as far as that is concerned. The evaluator was honest about the fact that the testing instrument may not focus on all of the skills that Elise may need help with, so an OT might find some things that could be fine-tuned for her. I may try to work something out with Laura again for the summer...I'll see what she thinks about Elise's progress.

I had a sort of rough evening today...one of those times when I felt like a bad mother...I'm not proud at all to say that sometimes my temper gets the best of me...and my poor Audrey inherited that yucky trait from her mother (though I hope to claim that she inherited some good traits from me too :) After the dust settled tonight, she and I talked...and decided that when we feel really upset about something...we need to ask God to help us to stay calm. I really want to teach her the right way to handle anger...I'm afraid that when I see her angry outbursts, she is only doing what she has learned. I continue to ask God to mold my character...to shape me into the person that He wants me to be, so that I can be the best mother, wife, friend (and any other role that I have).

Appt with Dr Wood

Audrey saw Dr Wood today...no real explanations for her "accidents" yesterday. She had a urine test that came back normal...he told me to call back tomorrow to check again because they were going to grow a culture, but he expected it not to be normal too. Dr Wood gave us some warnings about what can cause urinary tract infections...very interesting...I was not aware of most of this:
-smelly soaps and bubble baths (of course), but he also said that sitting in regular soapy water could cause infection...He suggested that if the girls play in the tub, let them play in the clean water when they get in...then bathe and get out of the water
-caffeine (including chocolate....Audrey's favorite food group:)
-foods with red dye

Audrey has really had some special treatment lately. She had a date alone with Granny to the doll museum in Baton Rouge last weekend. They had a really good time...and they had Audrey's favorite delicacy-McDonald's. She also had Papa all to herself for a field trip to the Rural Life Museum last week. They had a great time...she was pooped when they got home. Today we went to see Mike the Tiger while Elise was in therapy...Audrey was so excited; she couldn't wait...until she saw that Mike was hanging out very close to the fence today...she was a little nervous (to put it lightly). But, then she warmed up to him...after I explained the double fences (about 10 times).

Lydia still continues to be a pure delight...which of course makes her mom very happy and much more relaxed. We had to reschedule her PT because Susan will be out of the office tomorrow...we'll see her next Monday.

Elise wrapped up her therapy for this semester at LSU today. We got some really good reports about her progress. Her therapist recorded 180-something words used during therapy this semester. That is just a tad below what we've found at home....215 words in a survey that I filled out for Suzanne. Stephanie (LSU therapist) also charted Elise's improvements since the beginning of the semester...very encouraging! The LSU supervisor (whose name is also Elise) suggested that we look into the LSU Language Preschool for Elise for the fall. I'm going to visit there tomorrow just to check it out, but as of now, I am completely satisfied with leaving her at BR Speech and Hearing...she's settled...and I feel like I have moved her so much...but I am going to check it out anyway, just to be sure that it is the best choice for Elise.

A Great Day

I have just been enjoying all of my girls so much...it is sooo wonderful to see Lydia feeling better. She seems to stay content and happy lately. In fact, Lydia and I went to work today! Tammy, Stephanie, and I met to plan summer trainings...Lydia was a big hit!! She barely made a peep all day...except when she was trying to play and talk with us. The big girls had a good time at Aunt Becky's house today. Grandma had to pick up Audrey from school because she had three "accidents" in a matter of hours, and her teacher had no clothes left to put on her....I thought that sounded really odd...unlike Audrey, so I made her an appt to see Dr Wood just in case it was some type of bladder infection or something. Well....we didn't actually make it to the dr because the bridge was shut down, and we were coming from Aunt Becky's house in Brusly. Who knew they would shut the city down because of a visit from the president? I rescheduled for tomorrow after Elise's last therapy visit at LSU. We also have a final meeting with Elise's speech therapist to discuss her progress this semester and ideas to work on for the summer.

We're spending the night at Grandma's house tonight because Martin is out of town for a golf tournament for his golf team. The girls are, of course, thrilled to be here. Mom and I laughed because they went from room to room leaving a new set of toys in each room....baby dolls in the kitchen....tea set in the living room...coloring books in the toy room...they had a ball!

Thank you all for all of the loving words of support today...I knew you would enjoy seeing some new pictures...it's been a while since I've posted some pics. Missy and Brittney- your emails really touched me. Thank you. I've been in awe lately at all the goodness our experiences have brought to me. No...I would not choose for my child to be born with special needs...I am not grateful for that, but it is what God chose, and I am so grateful for all of the special things that have come my way because of it. Through the help that other people have offered...I've been able to reconnect with some old friends...especially Bridget and Kristy...Honest-to-God, Kristy and I had played email tag for over 2 years...you know- the old "we need to get together" It just seemed that we couldn't find the time to do it...Lydia found the time for us. I've always loved all of my aunts and my family, but through their help for us, I've felt like I've been able to spend quality time with them and to get to know them better and form a special bond...especially Aunt Becky, Aunt Leigh, Aunt Linda. I always hesitate to name names because I'm afraid some people will feel left out...for those names that I do not mention-- know that I am grateful for all who have touched me. I'm grateful for all who have prayed for us and especially Lydia..all who have loved her without ever even meeting her. She knows she is special...I see it in her smile...she knows she can charm a crowd. :)