More News

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

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

OT Appt

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

Appt with Dr Alonso

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

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

3 month Check-up

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

Lydia's Update

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

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

Thankful!

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

Fwehh!!

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

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

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

Happy Thanksgiving to everyone!!

Frustrated!!

You won't believe this...The BR Clinic called today...the blood taken for one of the amino acid tests could not be used for the test when it reached the lab. It was supposed to be frozen, but it was thawed when they got it, so it has to be redone. I have calmed down a little now...but, I was so angry when I got that call this afternoon. The lady on the phone from the clinic assured me that they did everything they were supposed to do...somewhere between the clinic and the lab where it was to be tested---there was a mistake. Bottom line: somebody screwed up, and now Lydia has to pay for it. We'll probably go back tomorrow to do it...please pray hard that it won't be difficult. The problem has been that the test calls for no tourniquet...well Lydia's blood pressure is not strong enough for the blood to flow freely into the needle without the tourniquet. Not to mention that her veins are so tiny that they are hard for the lab techs to find. It took four sticks last time...and with each stick they had to dig around in her arm several times to actually get into the vein. She went through patterns of screams and exhausted wimpers...I'm crying now just thinking about her having to do it again. Please ask God to be with her for the test and that the techs have no problem getting the blood needed...and that it is taken care of the way it should be afterwards so that we don't have to repeat it again.

Lydia has still been eating well...she stills cries several times while she eats. It doesn't look like the same fearful painful reflux that we used to see, but I'm not sure if it may be a mild version of that. I hope not. I've been really hopeful about how well her feedings have gone lately. It could also be a little gas in her tummy...she has been having a little trouble burping lately. We'll see...I'll continue to watch her to see what it is. I think her congestion is finally on the upswing. She still sounds mildly congested, but it is not near as bad as it was.

Thank you for your prayers, and please continue to remember her in them.

A Break for Mom

Yeah! Today was a great day...so I think. Elise and I left this morning for OT...then straight to speech at LSU. I got back in time to fix the girls lunch and welcome my nanny, Aunt Linda and my grandmother who came to stay with the girls today to give me a day out. What a treat! I spent lots of time and lots of money at Toys-R-Us to put the first dent in my Christmas shopping. I think I single-handedly kept them in business for today. Anyway, I wasn't with Lydia for most of the day...but heard that she did great!! She ate well...rested well...and did some cooing and smiling!?! I am so proud of her!

Our Weekend

It is so nice to be able to report Lydia eating well. Keep your fingers crossed that this continues. She has been eating about 4 oz. almost every feeding...sometimes even 5 or 6oz. Wow! I am a little hesitant to give her as much as she seems to want because of the uncharacteristic vomit she had Friday night...but, no vomiting since then. Thank you God. She has also been doing a little more smiling...it is so cute! Still hard to really say if it is in response to anything we're doing (still don't see any eye contact)...but, we're enjoying it just the same. Martin and I discussed that it may be one of the many angels she has loving her in heaven that may be making her smile.

Audrey and Elise seem to be recovering well from the bronchitis....still fighting runny noses and coughs, but they're dealing with it like a couple of little champs.

Speaking of champs... the Zachary Broncos won 1st place in the Wedge Kyes Tournament this weekend!! Keep your fingers crossed that their successful undefeated season continues! Thanks to Grandma and Paw-Paw for keeping the girls for us to go out and celebrate a little after the championship game. It was a much needed nice time.
Go Broncos!

What a Day!

To start things off, Lydia slept ALL NIGHT last night...even with Mommy in charge! She took her last bottle at 8:30 last night (and went to sleep a little after 9:00) and slept until 6:30 this morning...yes, your eyes are not deceiving you...she slept 9 1/2 hours! I hope it is the start of something new and exciting! Although, we were up at about 5:00 with Audrey...bad cough, fever, bad congestion...sounds familiar, right? So, I made her an appointment to see the doctor at 4:00. Meanwhile, Lydia continued to eat well and have another good day. We found out the inevitable at the doctor's office...Audrey has bronchitis too. Poor baby...she really started to feel bad on the way home...fever chills, not able to breathe from the congestion.

We also found out that our little Lydia gained 3 oz. since Tuesday...tipping the scale at 9 lbs. 5.5 oz. Yippee! Dr. Wood said that brings joy to his heart. He tells us that he thinks about us all the time. I think he is just as concerned as we are about our Lydia. I also had him check her out to be sure that she doesn't have any signs of the bronchitis. He gave her a clean bill of health, except of course for the cold that is going on 3 weeks now. Instructions are to keep her away from her big sisters...as much as humanly possible.

Then...tonight, the stress really hit...feeding Lydia her last bottle before bed...she was sort of falling asleep...I was trying to get her to take just a little more. I put her on my shoulder for a burp...and---she threw up more than I could ever imagine her little body to hold. I called the nurse and they suggested giving her Pedialite...which I don't have at home...and Martin is in Eunice. So, Grandma and Paw-Paw are on their way over to bring us some. In the meantime, I am attempting to give her a little more milk because I suspect that the puking was from her reflux. If it happens again, I'll know that it may be a virus...and I'll start with the Pedialite. Our poor girl just can't go very long without some sort of excitement!

Today's Report

Lydia had a much better day today...hooray! She ate well at every feeding (same combination that we've recently found to work for her), she was alert and happy (not crying...that means happy to us!) for a little while after she ate each time, then she went right to sleep when she got tired. She was a little cranky this evening...but, she's entitled. She fell asleep after her last bottle and has been snoozing ever since. I pray that this good day is followed by a good night...one day/hour/minute at a time! :)

Elise still felt pretty yucky this morning, but I think she's on the upswing tonight. She's got two doses of antibiotic in her system, so hopefully she'll be completely well soon. Also, please help us pray that no one else in our house catches the same sickness.

Audrey has been a complete sweetheart...so gentle and sweet with her sisters (well, Lydia at least :) Grandma was here tonight helping us (Thank you!) and she was getting ready to bathe Lydia for me. Audrey hopped up to say that she wanted to help...then, she said, "I really wish I could bathe her by myself. I really wish I could be the momma to Lydia." Not so fast, my sweet girl. Soon enough! When her teacher asked recently what she wanted to be when she grew up, she said, "A mommy." Her daddy says she'll get her chance...when she's about 40.

Speaking of Daddy, he is a rather busy bee these days. He is on Day 3 of a ten-day spree of leaving before everyone wakes up and coming home after everyone's asleep. All of us girls really miss him. With every car door we heard in the neighborhood today, Audrey screamed, "There's Daddy," and ran to the back door. We're going to have to find a way to see him in some way soon.

Change of Plans Today

Elise developed a cough and a high fever (103.2) with the runny nose that she's had the past few days, so we had to skip Lydia's OT today to take Elise to the doctor. Elise has bronchitis. Dr. Wood prescribed Zithromax for her to get rid of it. Elise was such a big girl during her exam today...let me tell you what a big deal that is...the last few times we've gone to the doctor, she refuses to even go in the door that leads to the back where the examining rooms are. She usually stands in the doorway and says, "no, no, no," even if she is not to be the patient that day. Today, she did not shed one tear....even during the entire exam! Dr. Wood and I were both so proud of her!!!

While we were there, I asked for a weight check for Lydia. She weighed 9 lbs. 2.5 oz....4 oz. gain since last Tuesday...could be better. :( Then, Dr. Wood ordered the blood tests for the lactic acid and pyruvic acid and the chromosome study...from Dr. Superneau's request. So, here we go again! It is so heartwrenching for a mommy to watch them poke and prod and try again and again to get a vein that will give the amount of blood that they need for the test. It is no picnic for the lab techs either...they feel for her just as much as I do, I think. After the 4th stick, I could hear the tech mumbling something, but I couldn't really understand what she was saying. Just when I realized she was saying, "Come on Jesus. Make this blood flow. I know you feel for this baby too. Come on Jesus," the blood started to flow easily into the syringe. My eyes filled up with tears. They were so appreciative to me for being patient with them...but I know that they were doing the best they could and that it hurt them just as much as it hurt me. My little Lydia is a tough cookie...she doesn't have a choice, with all we've put her through. The lab techs said that they hoped they didn't see us come in there again....and, of course, I agreed.

Lydia had a tough feeding time last night, but things have been better today. I suspect that all the times that she sucks and can't get anything from the bottle...she is losing weight that she gains when does actually eat well. It seems like a revolving door...we'll keep at it to be sure that she continues to gain.

Just a little side piece of info...
My wonderful husband gave me a gift of a night out with the girls for my birthday. He actually called some of my friends and set it up himself. He decided that he would keep the girls himself (unaware that Granny had gone out of town for the weekend...I think he was planning to get help from her.) Anyway, he did a fantastic job! All girls were happy, clean, fed, and seemed to have fun! And...here's the kicker: Lydia is obviously turning out to be a daddy's girl because that is the ONLY night that she slept all night...he fed her at 11:30, then she slept until 7:30 the next morning. So, I thought- GREAT! That is the start of something new....wrong! The last two nights, when mom was in charge, she woke up between 3:00 and 3:30 for her feeding just like usual. I guess I can only continue to hope! The better news, though, is that she was awake for only about 45 minutes during that time as opposed to her regular 2-3 hours. That at least gives mom a little more shut-eye.

Appt with Dr. Hollman Today

Just as every other doctor and therapist has told us, Dr. Hollman said that she would love to tell us a definitive diagnosis....but, she can't at Lydia's age. She is definitely concerned with her delays (lack of eye contact and tracking; lack of responsive smiles; not picking up her head in the prone position; feeding issues), but we can only wait to see how Lydia develops to determine if there is a specific cause and what her prognosis will be. She said, as a neurologist, she tells patients that it is good news when there isn't a diagnosis (from an MRI, etc.) because usually if there is a diagnosis- it is really bad. I asked what type of possible cause she would suspect, and she said some type of metabolic disorder...which is what we are testing for with Dr. Superneau. She was pleased with Elise's progress and happy that she is getting so much therapy. She pointed out that we also don't have a diagnosis for Elise. She jokingly said, "I'm sorry we've been so much help to you." I asked if she thought the two conditions were related, and she wasn't convinced of that...since the symptoms are somewhat different. She too said that she didn't consider Lydia's muscle tone terribly low. I asked about autism since I've seen so much about it in the news lately...I thought it may be a possibility for Lydia. She said that it is possible down the road, but it does not typically present itself in this way. She said that most kids with autism develop normally for the first year of life. There are usually no signs of anything wrong until about 2 years of age. Interestingly, though, she said that there is truly an epidemic of autism right now...when she started practicing 24 years ago, about 1 in 200 of her patients were autistic...now about 25% of her patients have autism. That was an interesting fact to me. Dr. Hollman wants Lydia to see an optomologist to have her eyes checked to see if that is the reason she is not making eye contact...something some friends had suggested might be the issue with that. We'll find out. She also was happy that I had started the paperwork for Early Steps to begin getting Lydia some therapy. She also said that PT with Susan Ducote is a good idea...I told her that if I was going to get a physical therapist...I wouldn't see anyone else...she is without-a-doubt -- the best in the field, in my opinion. She suggested that we do OT through Early Steps and use insurance for PT with Susan. Dr. Hollman wants to see Lydia again in 2 months, and she wants to see Elise again in 6 months. I told her how all of Elise's speech therapists have said that she will probably need therapy well into elementary school, and then once she begins speaking fluently, she'll be fine. She also pointed out, though, that kids with speech problems usually develop reading problems when they get to elementary school...so we should be prepared for that.

Feeding Update-
After traveling across town on Saturday for the Y-cut nipples, Lydia was still not able to get the formula with oatmeal out of the nipple. After many trials, we've found this combination: formula (without added calories) and 1/8 teaspoon of oatmeal per ounce (which adds calories too) with the #3 faster flow nipple. I can't figure out why she can get it out of the #3 nipple and not the y-cut since the hole is clearly bigger, but nothing with Lydia has really been predictable. I will probably soon try to add more calories to the formula again, but it was just too thick for her that way...and she was still having reflux. The oatmeal has helped to decrease the reflux (for now, anyway).

The cycle continues...

Sigh....as always, every time we change something...Lydia's reflux seems to get better for a few days. The change in formula actually lasted for almost a week. Then, last night she began refluxing again at each feeding. Since she is taking the Nexium in the evenings now, she refluxed soon after getting the medicine in her system. Sigh...again...so, now I will go to Babies-r-Us and get the Y-cut nipples (hopefully, they have them this time...I didn't follow up on it last time because I thought the new formula was doing the trick without oatmeal). We'll try adding a little oatmeal to see if it helps...and we pray that she is able to suck it out of the nipple. We'll see.

Appointments next week

Monday- Elise and Lydia- Dr. Hollman 8:00 (neurologist); Elise- speech- LSU 10:30
Tuesday- Lydia- OT (Theresa) 11:20
Wednesday- Elise- LSU- Speech- 10:30
Thursday- Lydia- Early Steps Meeting- 9:30
Friday- Elise- Speech- Suzanne (at home) 9:00

Pharyngogram

Today's procedure was brief and painless. It took all of about 10 minutes...Lydia drank two different mixtures of barium and they x-rayed her throat to watch her swallow. The speech therapist said that she did perfectly. There was no evidence of any problems...one more thing ruled out! :)

I have been praying hard that her congestion clears up soon...please help me to pray specifically for that. It is so heart-breaking to see and hear her like that.

One more thing...

I forgot this bit of encouraging information from the OT...she said that she didn't consider Lydia's tone to be terribly low. She said she would consider it to be on the low end of normal. That is good news! She did also say, though, that she felt that Lydia needs to be monitored. In another 6 months...she might feel differently...again- only Lydia will be the one to let us know...we'll continue to play the waiting game.

OT Visit

Lydia saw Theresa today...OT at the Woman's Center to Wellness. She noticed that Lydia does have an efficient suck intermittently. She suggested that we try a different latex nipple to see if she can suck better using that. She was pleased that Lydia is doing some "talking" though she thought that there is a need for concern because she does not make eye contact. She suggested that we use the boppy pillow to lay her on because her body will feel secure enough that she can move her arms and legs freely, which she should be doing developmentally right now. When she placed her on the boppy, she was pleased with the way that she did pick up her arms and legs. We will try to use that more at home...time on the floor has been scarce because her big sisters love her SO much...I'm afraid they might love her to death. :) She suggested that we put her in the play pin...I don't know why I hadn't thought of that before. She thought that her inconsistent suck could be attributed to clogged nipples, though I don't really think that has been the problem...since she also had the same problems before we thickened the formula. She also thought that her problem with congestion could be caused from the reflux...who knows? All we know is that she is absolutely miserable with her congestion...I wish there was something else I could do. I asked about the possiblity of cleft palate, and she thought it was not likely because she has never had milk come out through her nose, which would be a sign of cleft palate.

Lydia's day today was really good! This evening, she ate her evening bottle...4 oz., I might add. Then she sat in my lap and looked around for a good while. She whimpered to go to sleep...so I gave her a pacifier and put her right down. She actually seemed at peace for a large part of the day...when her congestion wasn't giving her big fits.

Lydia's Day

Today, Lydia ate pretty well! The new formula is great so far...I only recognized one episode of reflux today. I switched her to the #3 nipple (faster flow/ bigger hole) because I thought she was doing better with it. I plan to bring both the #2 and #3 to her OT appt tomorrow to see what she thinks. Lydia's biggest and saddest problem right now is a serious case of congestion. She sounds absolutely terrible right now as she tries to get some rest. The frustrating part is that she can't have any medicine for it...not until she's 2 years old...unbelievable, right? We are using the humidifier, saline drops and nose suctioner as much as we can, but she is just not getting any relief. Poor baby! I guess it got worse from the cold weather we had today...we went to Elise's therapy at LSU...though, if she were any more bundled up- she'd be a cocoon.

I'll try to update tomorrow to let you know what we find out from the OT.

2 Witches and a Black Cat

Halloween was a lot of fun! Momma and Lydia handed out candy while Daddy and big sisters went trick-or-treating. Elise went to two houses and had enough...she joined Mom and Lydia while Daddy and Audrey roamed the neighborhood. All Poche's had a grand Halloween time!

Weight check

Lydia weighed 8 lbs. 14.5 oz. on Dr. Wood's scale today...that's + 1 ounce since Friday. Not good...but at least she didn't lose, which is what I was afraid of since she had such a difficult weekend. We started the Enfamil AR last night, and she seemed to do well...she drank it from a #2 nipple and didn't appear to have many episodes of reflux. Again, it has been the trend for her to do well each time we try something new...and then she has fallen back into the same pattern after a few days. Please help us pray that that does not happen this time. I pray that feeding becomes a happy time for our Lydia, as it should be for all babies.

THANK YOUS

I want to thank you all for all the help you have offered to our family over the past weeks. Since this all began, I have been bombarded with so many offers...it is overwhelming. I feel like we are so loved. I also KNOW that everyone else is just as busy as we are...life moves at a fast pace these days for everyone. You are tremendous and we are truly blessed for you to offer time that you probably don't have to give.

I hope I don't forget anyone....but I want to thank each person specifically because I want you to know how much I appreciate it....

Aunt Becky, Aunt Linda, Sabrina, Melissa, Bridget, Tiffany ("Tiff"), Jennifer, Stacy, Rose, Tammy, Allison, Coach-n-Dee, Aunt Leigh, Aunt Shelley...

Tiffanie ("T") and her carpool/babysitting is a great help, as always!

Lydia's godmother, Jennie (ie. "Nanny J") has been a great confident and help when I need her!

Stephanie has been a godsend of information for me! I am so thankful that God placed us in the same line of work. Her daughter has many of the same difficulties as Lydia and Elise, and she has so many suggestions and contacts that are helpful.

And, of course, the grandparents...

All of Papa's offers...and Paw-Paw's help...

Granny's help running here and there (and everywhere), help with housework, and financial help...we are very lucky!

And Grandma's "drop everything" attitude that keeps her coming back anytime she hears an "I'm not so-ok" sound in my voice. This probably started with my birth! Many people would say that I am spoiled, and I agree. :) But, I only pray that my girls will feel just as "spoiled" as I have in my 32 (did I just say 32?) years.

Not to mention all of the prayers and prayer lines that she has been on...we know that prayer is the best medicine!

THANK YOU, THANK YOU, THANK YOU and THANK YOU!!

Again, if I have forgotten anyone, I apologize...it's only because SO many people have offered to come to our rescue during this difficult time. I appreciate it so much, and beware...as difficult as it is...I may start to take you up on some of the offers. I usually call on my mom after turning down other offers...because, well, she's my mom, right? But, she needs a break too...she's got health and sanity to preserve just like me!

Appt with Dr. Alonso (GI)

Dr. Alonso was still pretty perplexed by Lydia today. She thinks that we do need to try some things to get the reflux in check, but she feels that reflux is not her main problem. She thinks that there is also something neurological causing her so many difficulties, and I'm beginning to agree with that. Not only does she have a poor suck, but she has an inconsistent poor suck. I've been playing the trial and error game trying to find the right nipple with the right amount of oatmeal with the right formula. At her first feeding this morning, she took 3 oz of formula with 1 tsp of oatmeal with a #3 faster flow nipple. It was a challenge for her, but she got it down. For her second feeding, I tried exactly the same combination, and she couldn't get a drop out...seemingly sucking profusely. Dr. Alonso suggested that maybe she is more tired at certain times of the day...I will begin keeping a better log of her feedings to watch for that. A couple of people have suggested the possibility of a cleft palate...Dr. Alonso checked for that and didn't see it to be an issue...she said, unless it was farther back in her mouth where she couldn't see. I will look into this further with the next few doctors/therapists that we see.

Dr. Alonso did suggest a few things for reducing the reflux. She switched the Nexium to powder instead of the capsule that we were doing, and switched it to the evening instead of the morning. We will also begin using Enfamil AR (anti-reflux...already has cereal in the formula). She said to start with no oatmeal in the formula and see how she does. Then if she seems to need it, gradually add oatmeal to a maximum of 1/2 tsp per ounce. She wants to see her again the week after Thanksgiving...her appt is Nov 28 at 8:45. Dr. Alonso is most concerned with her weight gain. Lydia gained 7 oz. in 10 days according to her scale...not as much as she would like to see. I am going to take her to Dr. Wood's office tomorrow for a weight check to be sure that she hasn't lost since Friday with all of the tribulations over the weekend. She was 8 12.5 on Alonso's scale today, and 8 13.5 on Wood's scale on Friday. If she does not consistently gain enough weight, Dr. Alonso will find more ways to add calories to her intake. She suggested adding vegetable oil to add 7 calories. She doesn't want to do that yet, but it is a possibility depending on her weight gain.

Same old, same old

Well, today I set out to get new Y-cut Dr. Brown's nipples and follow the suggestions of the speech therapist...powerize the oatmeal and decrease to 1 tsp per ounce. First of all- no Y-cut nipples at Babies-r-us, so I bought a different brand cross-cut design (not much different I'm sure). Well, just as I suspected, she was still not able to get the milk from the nipple. So frustrating for me and more importantly for her. Then, I gave her some milk without oatmeal so that she could at least get something into her system. She did fairly well with that surprisingly...because when we tried it during the night, she refluxed every time she tried to suck. I then tried a little less oatmeal with the formula...she was able to get about 1/2 ounce that way. I guess I will continue to try to find the right mix of ingredients for her little cocktails. The mission continues...

A Happy Note

Amidst all of the craziness with Lydia, I haven't given an update on Elise in a while. Her 4 hours of speech therapy per week are really paying off. She is making so much progress, and all therapists who are involved with her (as well as mom and dad) are very proud of how far she has come. She still has a long road ahead, but you can tell from her that she feels more empowered now that she has some abilities to communicate. Suzanne (her Early Steps therapist) has begun analyzing the sounds and words that Elise produces to try to figure out some patterns so that we can understand her better. It is fascinating how much she knows about language and how she can draw conclusions based on Elise's enunciations. I can usually (though not always) understand what Elise is saying in context. It is fun to see her eyes light up when she knows that we know what she is saying. We have lots of fun exercises to work on with her at home and her teachers at Parent's Day Out are also working on some things with her. It is a team effort, and Elise is lucky to have such great people involved in her care!

Audrey is doing very well also...loving life at the "big school." She had a fairy tale day at school today, and was precious dressed in her Cinderella costume. She has been a tremendous help to mommy through all of this. I sometimes feel guilty because I treat her like a "go-getter," but I think she enjoys it most of the time.

Upcoming Appointments

Just to let you know the appointments scheduled soon....and partly to help me keep track:

Monday, November 5th- Dr. Alonso (GI) 11:30
Elise- speech- LSU 10:30
Wednesday, November 7th- Elise's quarterly Early Steps Meeting 10:30
Elise- speech - LSU 10:30
Thursday, November 8th- OT consult: Theresa Miller- Woman's Center for Wellness 9:40
Friday, November 9th- Pharyngogram- Outpatient procedure at OLOL 9:30
(note to self: need to reschedule Elise's speech therapy for later time Friday)

Monday, November 12th- Dr. Hollman (neurologist)

Feeding Difficulties

Ok...now I'm thinking that the poor suck causing not enough food to get in...is not the problem. Yesterday, the repeated cycle was this: she would suck on a bottle for 5-10 minutes and get nothing (not a drop) and be perfectly happy. Then, as soon as she would get some milk into her mouth, she would scream...mouth full of milk spilling over. It is a wonder that she got anything down. I was so frustrated watching her obviously hurt like this...I made some phone calls today. I called the speech therapist that we saw at the Lake and she gave me some suggestions. I need to decrease the amount of oatmeal (1 tsp per ounce instead of 2 tsp per ounce) and I need to powderize the oatmeal in a blender before adding it to the bottle. I'll also have to buy new Y-cut nipples to replace the ones that I cut to make the hole bigger. I felt like this was probably the wrong thing to do...but, I was just trying to make it easier for her to actually get some nutrition. Hopefully, the new tricks that Sarah told me about will help. She also suggested a Pharyngogram (sp?), which we scheduled for next week. It is a test that examines the swallowing...she drinks barium while they x-ray her throat to be sure that there are no swallowing or aspirating problems.

I also made an appointment with Dr. Wood today...mostly to get a weight, and to run by him all the new issues and ideas. She gained 8 ounces in the last nine days to bring her to 8 lbs. and 13.5 oz. He was pleased and said that I can continue to let her go about 4 hours between feedings as long as she wants to. I've found lately that the oatmeal seems to be filling her up more...when I try to wake her and feed her after three hours, she is still totally out and not interested in even trying to suck. He and I discussed possible reasons for the new feeding problems:
-maybe the Nexium was still in her system last weekend, which is why she did well with that in conjunction with the oatmeal...and maybe it left her system earlier in the week. We started it back Wednesday, so maybe it is taking a couple more days for it to kick in again. I am cautiously hopeful that full strength Nexium together with the oatmeal will bring her some relief...Please God!
-maybe her cold and congestion make her do the gagging that she's doing when she eats sometimes...it certainly can't help the situation.
-maybe neurological factors...
He checked her out again and agreed with me that she is not making eye contact and not smiling in response. He said that by 10 weeks, she should definitely be smiling. These are totally different problems that what Elise had...she was smiling by 6 weeks and was very animated. I didn't even suspect any problems with her tone until she was 6 months old. I'm not trying to diagnose anything by saying that...it's just an observation. We'll continue to play the waiting game with all of this...and give our worries to God. No worry...just prayer!

Life since the PH Probe Test

Since Lydia's PH Probe test on Monday, we have not seen a real change in how she feels. As we suspected, we shouldn't have held high expectations about the oatmeal in the formula. It seems that everytime we try something new, she seems a lot better for a few days...then, she falls back into the same crying patterns. It figures that she seemed to reflux much more since we've been home...so that it didn't appear on the test. I put her back on the Nexium yesterday, so hopefully that in conjunction with the thicker formula will give her some relief. I am really worried now about her bad suck. I am trying to get in touch with the speech therapist that we saw at the Lake to find out if there is anything else we should try. I will probably also look into an OT consult for more answers. On top of everything, she has developed a cold...so the congestion doesn't help with feeding issues. It could possibly contribute to her sucking difficulties, but she was having difficulty with her sucking before that too. I'm not sure if maybe her crying during eating has to do with the fact that she can't suck well, and she is frustrated because the food can't get to her fast enough. I'll try to post again when I get more info.

Welcome

I thought this would be a more efficient way of getting out information. Whenever I know something new about Lydia's progress, I'll post it here. You can check back on your own time to find out how she and the rest of the Poche's are doing.