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. :)

POCHE GIRLS

The Latest News

Fweh!! Sorry it's been so long since I've updated...I've been spending every spare computer minute catching up on work...We are doing very well. Lydia is feeling a TON better!! Yeah!! The antihistamine is really helping with her congestion, and her ear infection must be feeling better too. She has been really happy and content lately....except for at church. We have made a new commitment to go to church as a family every week...it's been tough to take the whole family since Lydia's been born. Everyone seems really happy with our new routine...except Lydia. For the last two weeks, she has spent her only real crying fits...at church. Hopefully, she'll get used to it soon. Today we went to the Blessing of the Sick to have her blessed. Every little bit helps...I think she is on every prayer line from here to 'who knows'...and we are so thankful. Some special friends have even submitted her name to masses of healing and other special prayer lines around the world. She received a rosary this week from Italy...thank you Tammy and Sandy. Our special little angel gets lots of attention...good for her!

The Wait...
Sooo many people have been asking lately about news from Atlanta...none yet. The biopsy was done March 19th, and we were told that it would be about 8-12 weeks...you can do the math; I am trying my best not to. I don't like to clutter my brain with anxiety. With God's help, I've done a pretty good job of keeping it out of my mind. Your help with that would be good too...just trust that I will update as soon as we get that information to share. The more you help me not to think about it, the better. I prefer to just enjoy my sweet little smiley girl! We have been so proud of her lately! Martin and I noticed within the last week that she is paying more attention to toys and actually reaching her hands out to touch them. I told Martin that it brings so much joy to my heart to see her do that. He laughed and said, "It makes me feel glad....that's the difference between a male and female response about that." Though we both express our feelings differently, I think we both have the same pride. It is amazing how much pride I feel for each new thing that she accomplishes...for some reason when children are delayed with the things that they accomplish...it makes it that much sweeter when they do it. When I realized that she was actually reaching her hands up high to touch a toy the other night...I stopped in my tracks and just watched...I felt my eyes water up and flip-flops in heart! What joy!

PT last week wasn't quite as successful. She slept through the whole session. Susan just did some passive stretching with her, since she couldn't get her awake long enough to participate in any active movements. I think she was still not feeling well then. We actually skipped OT last week because of her sickness...that was probably for the best.

Lydia "Cultured"
I just found the prayer name card that someone gave to Lydia for her baptism...this is what it reads:
And the Lord, He it is that doth go before thee; He will be with thee, He will not fail thee, neither forsake thee, fear not, neither be dismayed.
Deuteronomy 31:8
How fitting....and faith-growing, not a coincidence that it fits Lydia perfectly. He will be with her...He will not fail her or forsake her....do not fear or be discouraged. How could we be afraid or discouraged when we know that God's healing and loving hand are upon her always..?

Sensitivity to words....
It's funny how your outlook on certain things changes as life brings new circumstances. I've never thought much about the connotation of certain terms used with children with special needs...until now. For some reason, the word "wrong" as in "What's wrong with her?" suddenly rubs me the "wrong" way...no pun intended. :) How could anything be wrong with Lydia or anyone else created special by God? As I've said before and we all know, God doesn't make mistakes...so there is absolutely nothing "wrong" with her...in fact all of the things that are "right" with her are so fully appreciated and celebrated. Also...."normal" is one that has a hidden meaning...of course she's normal. She is just exactly who she was intended to be...whatever circumstances that brings to her....for some reason, "typical" seems to rest better with me. Lydia does not develop the same as typical children her age, but that doesn't mean that she is not normal. "Issues" for some reason seems to also be a better word than "problems" though I sometimes catch myself using some of these words too. I know it's kind of crazy, and I never dreamed that something so trivial would bother me at all...but, I guess you never know.

Our big girls are doing well too! Healthy and happy! Audrey and I had an emotional moment last week. She had a field trip, and she cried because I was not going with her...of course after she left, I cried too. I always thought that when I decided to be a stay-at-home mom, I would be able to attend everything like that. I imagined myself as one of those moms who volunteers for everything and is always there...not the case. When I called Martin in tears, he pointed out the obvious...he said, "I know you realize that we have 3 kids, right? You're not going to be able to be everywhere at once." This is true...and she and I did both get over it. She had another field trip the following day, and she did not cry at all that I wasn't going to that one.

Elise is doing well too....she's been on her usual tear...we have laughed and nicknamed her El Nino because she is good at creating havoc in our house. She's gotten some sympathy from friends lately for that...but it's all in fun. Sometimes we walk into a room and we can tell that "El Nino" has passed through. Elise's speech has been a little stagnant lately. She is stuck in some of the same routines as far as repeating things over and over. I also see that when I don't understand something that she is trying to tell me, she reverts to a word that she knows I understand...and basically changes what she is trying to say. Suzanne saw some improvements last week...trying to put together two syllable words...and adding -ing to verbs. I'll be looking out for those different accomplishments. I also have been planning to put together a "guide to understanding Elise's speech" for relatives and friends who are with her often. I'll try to get to that soon...there are definite rules for the way that she pronounces words, and it helps to know what those rules are. Suzanne was not in favor of the communication board that we discussed at the EBR meeting...she thinks it might detract Elise from her progress right now. We'll continue to be open to it, but we value Suzanne's opinion...she has done such a phenomenal job with Elise...I'll try to invite her to be here for the eval for the communication board so that she can help us to decide if it will be worthwhile. This week is Elise's last week of therapy at LSU until fall. She'll continue with Suzanne and BR Speech and Hearing for the summer.

The Same...

Lydia is still feeling pretty awful... :( Congestion is still terrible...still not eating very well...lost a few ounces. I did see a few smiles today though, so that's a good sign. I hope to see her feel better soon. :)

Dr Appt today

What an afternoon! The crew and I got all buckled up in the truck to take Lydia to her 3:15 appt with Dr Wood...to find that the truck wouldn't start! Thank God for Aunt Becky who saved us! There's not too many people that you can call who'd say, "I'll stop what I'm doing. I'm on my way." I hope that I can be that person for someone one day. Aunt Becky stayed with my big girls and let me take her brand new car to bring Lydia to the dr. I'm so glad that we went...Lydia has an ear infection. We start an antibiotic tonight, and he also prescribed an antihistimine since I told him that I find that she gets this congestion too often...and that it's so bad every time. Hopefully all of this will help her to feel better soon.

Elise's Eval

Elise's 1508 eval for the EBR school system went very well today. Tiffanie wasn't able to keep Audrey and Lydia because Mason had fever (we hope he's feeling better!), but it all worked out. Audrey was a big help with Elise, and all three girls were a big hit! While I sat with Lydia and answered some questions from a few of the therapists and evaluators, some of the other therapists took Audrey and Elise to do some testing with Elise. They felt like Elise was much more uninhibited with Audrey there...she didn't clam up at all, so they got a pretty accurate feel for her skills. All of the evaluators were very complimentary of the girls...one even said how much fun she had with them...she said, "Bring them back again...come every other day...I might come to your house just to play with them." It was fun.

Elise will probably qualify for speech services within the school system.
[Just to clarify for everyone: Elise now receives speech therapy once a week in our home with an Early Steps speech therapist (Suzanne). The Early Steps program is only for kids 0-3 years, so Elise will age out of the program in August. After they age out of Early Steps, they move on to therapy provided by the school system. We will have an IEP to discuss how those needs will be met...in a school or at home, etc.]
Elise will probably not qualify for OT with the school system. Requirements are that a child must score 6 mos. below their cognitive skills (not chronological age) to qualify for OT services within the school system...the reason is a lack of therapists...they make the requirements more stringent so that they serve only the more severe cases. Elise scored at 31 months for self-care and 27 mos. for fine motor. She is about 32 mos. now, so she is not too far behind. We will continue to pursue evaluation for OT services through Early steps for the summer...then we'll decide in the fall if we want to get private OT services or not (probably with Laura from Neurotherapy....she has worked with her for the past year) . The therapist today also gave me some ideas for activities to help Elise with hand strength and coordination...that is helpful...we'll try to incorporate some activities at home.
The speech therapist also referred Elise for a communication board...a board with pictures for her to push a button to enunciate words for her. This is something that has been suggested to us by all of her therapists, and Martin and I have always declined...feeling like it was limiting...spoken words and signs seemed much better to us. But, I do admit that I've never even seen a board...to make a true judgement about if it would be good for Elise or not. And the the therapist today gave me a new take on it...some different ways of using it instead of using it as a primary form of communication: building vocabulary, strengthening articulation, etc. She said that a team from pupil appraisal would come to our house to evaluate Elise with the boards to see which one might be of the most benefit to her....then we have the option to decline if we so wish. The therapist just felt like Elise's articulation gets in the way...maybe not as much for us (our family) because we can pretty much figure out what she's saying (most of the time)...but, the rest of the world (especially in a school setting) would have a harder time, which would limit what Elise could do. She felt like Elise really could answer some of the questions that she asked of her today, but she did not understand her speech enough to be sure. Since we're not losing anything to do this eval for the communication board and we're not tied to it...I thought we could give it a try.

Lydia's sickness:
She feels absolutely awful again today....a little fever: 100 degrees, nose congestion starting to turn yellow-green...we have an appt with Dr Wood for 3:15. Hopefully we can get some kind of medicine to help her to feel better. Her appetite is really dwindling now...I can barely get her to take 1 oz at a time...she's just miserable. Please pray that she feels better soon. :)

Yucky congestion

Lydia is still feeling pretty awful. I think I will try to bring her in to see Dr Wood tomorrow afternoon. (We have Elise's 1508 eval in the morning.) I also want him to take another look at her incision anyway. Her stitches were dissolvable, but there is one stitch that is still there. I called about it a couple of weeks ago...he said to just keep neosporin on it, and it might just take longer to dissolve...I think we've given it enough time. Dr Alberty's nurse looked at it for me on Friday and said that they'll probably have to remove it with a suture removal kit.

Another note from our appt with Alberty that I forgot...
I told him that I was confused about how Lydia had eaten so well for a whole week and had only gained 1 1/2 oz. Again, he said that we would not be slaves to the numbers..he is no longer holding us to that 1/2 oz per day figure. He just wants to keep up with her to be sure that she is gaining enough for Lydia...not compared to anyone else. Right now, she's good. Anyhow, he said that the reason that she may seem to not gain as much could be due to possible spasticity in her muscles...if she is constantly tightening some of her muscles, she is burning more calories than a typical kid. For example, her big toes are constantly turned up...it takes energy for her to keep them in this position, which means that it takes calories. He was not diagnosing this persay... he was just offering it as a possibility. It makes sense to me.

Appt with Alberty

Sorry I've been posting sparingly lately...just busy with work and everything else. We're good! Except, Lydia woke up this morning with her yucky congestion again!! Poor baby! I have a feeling that is the cause of her decline in appetite...she has been taking about 2 oz at each feeding today. But, the good news is that Dr Alberty is not worried and not interested in looking into a feeding tube for Lydia at this time. He was pleased with her height for weight on the chart, and he also said that we are not slaves to the chart in Lydia's case. The charts are created for typical healthy children, so the numbers don't necessary apply to our very special Lydia. He said that the charts are there to alarm doctors that something is wrong if they don't continue growing on the bell curve...in Lydia's case, we already know something is "not right." So, we will compare her to herself and not to the rest of the healthy population. He was happy with the amount of subcutaneous tissue that she has. That means that her brain is definitely not being malnourished...when we eat, there is a definite order of organs that receive the calories...stomach, liver, brain, etc. and then the muscles and tissues...so, if her tissue looks good, we can assume that her brain is getting the nutrition that it needs. Also, since we already know that her brain growth is below normal, this may have something to do with her overall weight, since your head's weight is a certain percentage of your weight. And he says that since her height for weight looks good...even though her weight is off the chart....we don't want to feed her any more than we are doing now...that would cause her to gain too much weight for her height, and that wouldn't be good for her either. We will keep close ties with him and see him at least every three months to keep tabs on her growth. He said that we are not at all saying that she will never need a G tube...nor that she definitely will at some point...we are just saying that right now, she doesn't need it. I felt so satisfied with these responses...I was hoping to not have the decision left up entirely to me, and he never even really asked if I wanted it...he was sure that she was doing well without it...that, of course, makes me happy!

PT yesterday
Sue-Sue gave Lydia an A+ at her therapy yesterday! She did GREAT! She held up her head for several seconds without tiring...enjoying looking at herself in the mirror. She also did some good work with assisted rolling. And the biggest improvement was that she tolerated the work for a long time without fussing...or shutting down. She was a sweetheart! We will continue to work at home with our homework to keep up her good work....hopefully her cold won't slow her down too much.

Another request for massage....I stayed up watching Randy Pausch with Dianne Sawyer the other night (if you want to be inspired, you have got to watch his "last lecture"...find it online...he has also written a book...he is dying of pancreatic cancer and is sharing his wisdom about life with the world...he is amazing!) Anyway, it was so late that I was going to skip Lydia's massage...she said, "I don't think so mama." As soon as I got all of her clothes off to change her into pajamas, she started cooing at me with those sparkling little eyes...I knew just what she was thinking. I asked, "Do you want a massage?" She let out the loudest, cutest little cackle that she, of course, got her way! She was not going to let me skip her favorite part of the day....and one of my favorites too!

Pharyngogram Fine

Yesterday morning was our swallow study at the Lake....there were no problems...Lydia swallowed all of the liquids beautifully. We have our follow-up with Dr Alberty tomorrow at 1:30. Lydia's appetite seems to be starting to decrease today...
I'll try to update again after our appt tomorrow.

Fun Day

Audrey and I had a fun time going on a field trip with her class to the Strawberry Patch today. Thank you Aunt Linda and Maw-Maw Grace for keeping the other two girls for us!

I weighed Lydia again this morning and she weighed 14 lbs. 2 1/2 oz. That's +1 oz since yesterday. I'll continue to keep track of it to report to Dr Alberty on Friday.

HELP WANTED:
I really feel awkward about asking for help with the kids because I don't want to overburden anyone or make them feel obligated to say yes. So, I thought this might be a good option...I do need some help with babysitting in the next couple of weeks, so I'll post what I need and if you are interested and able to help, please let me know. :)

Wednesday, April 9th- Lydia's Pharyngogram 8:45
I need someone to keep Audrey and Elise from about 8:00 til about 10:45. This will also involve dropping Elise off at therapy at LSU for 9:00. I expect to be able to pick her back up at 10:30 after Lydia's appt.

Friday, April 11th- Lydia's appt with Dr Alberty 1:30
I need someone to stay with Elise from 1:00 till about 4:15. It's her naptime...and I expect to be able to pick up Audrey from school after Lydia's appt. We usually get home from school a little after 4.

Monday, April 14th- Elise's 1508 eval - EBR school system 8:30
I'd like someone to stay with Lydia and Audrey (or at least just Audrey...I may be able to take Lydia with me...This one is probably not quite as important...I can take Audrey too, but the lady that I spoke to acted as if it would be better if I didn't bring them.) She said it would probably take about 2 hours...so I'll need someone until about 11:00. Lydia has therapy at home at 11:30, so I'll definitely be back by then.

I was also hoping to have a day to go to work to meet about plans for summer trainings...Tues, April 22nd or Tues, April 29th...I'll need someone to pick up Elise from school (BR Speech and Hearing) at 11:00 and stay with her until about 4:00. I plan to just take Lydia with me, and Audrey will be at school.

Please...don't feel obligated to offer...just if you have the time. Most of these things, I can probably do with all of them...I can make it work some way. But, if it sounds like fun to you, and you can help, I really would appreciate. THANKS!

Weight disappointment

Lydia is and has been eating very well for the past week or so, so I weighed her yesterday with high hopes to see big numbers...not the case. She weighed 14 lbs. 1 oz. That's only a gain of 1 1/2 oz in 7 days. I'll try to weigh her again today...maybe a fluke?? We'll see.
This week's plans:
Pharyngogram (swallow study) Wednesday 8:45
Appt with Dr Alberty Friday 1:30

Eating like a champ!

Just to keep you updated...Lydia has continued to take 4 oz at every feeding since yesterday!!! Great news!! I hope she plans to continue this trend! Thanks for your continued prayers!
Have a great weekend!

Doing Well

Today has been a busy day...Elise and Audrey were off to school with Aunt Becky early this morning...Lydia and I went to her therapy with Susan (PT), then we picked up Elise from school and went for Lydia's blood test at Woman's for her thyroid.

Lydia has been eating great today!!! 4 oz. at every feeding so far! Keep your fingers crossed that this continues! :) She also didn't mind the heel stick for her blood test at all...my adorable little hero!

Prayer request:
My sister-in-law Tiffanie's aunt Kim (who is also our babysitter, Erin's mom) has just been diagnosed with ovarian cancer (as of this week). Please keep her and her family in your prayers. If you are interested in keeping up with her progress, Tiffanie is keeping a journal on the Caring Bridge site at www.caringbridge.org/visit/kimalmendinger .

Today's News

Lydia is still eating pretty well....no less than 3 oz at each feeding. Teresa came today (OT) and we discussed the issue of the feeding tube at length. She gave me some more issues to consider when making our decision...some things I hadn't thought about. We talked about how Lydia is just making it (on some days) with the nutrition that she gets solely from formula...(The amount of baby food that she is taking in is not enough to sustain her at all...I am basically continuing to do it to give her more practice with it so that she will hopefully get better and better at spoon-feeding so that it will provide a greater percentage of her nutrition...right now, there is basically no nutritional value to what she is getting by spoon..she just doesn't eat enough of it.) Anyhow...we talked about what will happen when we wean her from the bottle (which will probably be some time later than a typical child who weans at 12 mos....maybe 15-18 mos.) Will she be able to sustain her nutrition with spoon-feeding/table-feeding and liquids by cup? Good question. A question that we don't know the answer to right now, of course. But, one would predict that she will probably have some difficulties in that area. That would lead us to believe that what Dr Wood said is true...it is inevitable. That being true, it still doesn't make me want to go out and do it this instant when she is still feeding well. I am absolutely ready to do it when I see that she is having a decline...if and when that happens again. Teresa suggested that we go along with the plan as it stands....pharyngogram, follow-up with Alberty, and see the surgeon. We could have everything "on go" so that if (and when) she starts to refuse feeding, we can just make one call and schedule the procedure. I think that is a good plan. I stressed to her how I feel uneasy about the decision being left up to me...If a doctor would say, "Lydia needs a feeding tube...let's schedule it," it would make me feel more comfortable about it. I know I said just a few days ago that I was solid about my decision....I guess you can tell that is not true anymore. We'll get there...

An episode last night:
Lydia was in the living room with Martin when I went to take a bath last night. She had fallen asleep on a pillow. Martin noticed her to have what appeared to be an infantile spasm. He said it looked like a startle...just like the other spasms, but he said it was bigger arm movement than before. It happened 7 times....about 15 seconds apart. The difference between this and the spasms we saw before: she was sleeping, and she fell asleep between each jerk. Dr Hollman had told us that babies don't usually have infantile spasms in their sleep. When I came in and picked her up from him..I noticed that she had diarrhea...that lead us to wonder if maybe she was having stomach pains that caused a startle reflex with each cramp...but, she wasn't crying- that would be odd if she had pain that startled her so much. Another twist: When we saw Dr Schoffner in Atlanta, he said that he had never seen a baby with a normal EEG to have infantile spasms...so, he didn't think that her episodes were infantile spasms...he said he preferred to call them "arm jerks." He also said that the movement we described was not consistent with infantile spasms. I called Dr Hollman's office this morning to talk to her about it, but she was out until next Tuesday....so, I talked to another dr's nurse...Dr Golden said to watch Lydia and let them know if it happened again because they would want to do an EEG. If it happens again, I'll probably call Dr Hollman's cell phone to let her know.