All is Well!

I've had some time to reflect tonight...I'm choosing not to feel sorry for myself...it is not helpful, not necessary, and not appropriate. I realize that when I get down like I've been for the past few days, it's just because I've not spent enough time in prayer. Prayer is the answer to EVERYTHING. I've let too much of my worldly "stuff" bog me down the past few days. I have to tell myself all the things that I KNOW to be true....all the things that God is trying to tell me, if I just calm down and listen. He has given us this precious (precious in every sense of the word :)gift and has entrusted us with her care because He feels we are the best parents to take care of her...how grateful and humble I am. I have felt very overwhelmed lately...even said, "I guess God thought I was handling everything a little too gracefully...he decided to pile some more on." But I remember so many of the encouraging words I've heard from so many people (I have a folder in my email program entitled "Inspirational email" I save them there so that I can go back and read them when I need to.) My aunt Paulette sent this to my mom and dad during my last breaking point:
"This weak moment in Mandy's journey will make her strong, God is just pulling her in closer to make her stronger for the endurance she needs for each moment, for it is when we are weak that we are made strong."
So much comfort in that...I have faith that God is guiding my every step of this journey and leading me to a place so wonderful that only He could have planned. He knew that I needed to be reminded to center myself around Him...that He is the one and only captain of this ship and we are only along for the ride to witness each crashing wave and each miraculous save...for it is in His loving arms that we always fall, and so falling is not so scary after all. One of my favorite poems is "Footprints in the Sand"http://www.footprints-inthe-sand.com/index.php?page=Poem/Poem.php How lucky we all are to have Him carry us when we can't move forward on our own. I am trying with all my being to give my worries to God...even my guilt for thinking about myself so much when Lydia is the one who must endure more than any of us. I know that God will take it from me. I think a lot about a metaphor that my friend Missy made at Bible School last year....she had a bottle of bubbles and she told the children that inside the bottle were all her worries...and she listed them all. Then she opened the bottle and used the bubble wand to blow the bubbles into the air...as we all watched them float up into the air, she pointed out that God wants us to give our worries to Him and that as they float up, they began to disappear. She even invited some of the children to come up and pop some of the bubbles to show that God sends us friends to help take our worries away too. Such wisdom...and such a powerful illustration. God has sent so many people to my life to help pop the bubbles. If I just let myself feel the peace around me and the promises that God has given us all, I am so very thanful. He will never leave us stranded...we just have to surrender to Him, and LISTEN when He shares His loving wisdom. I feel such a peace right now just allowing Him to fill my soul with His love. There is nothing on this earth that is too big, too busy, too scary, too stressful, too overwhelming that He can't make right.

We had some great family time tonight. Martin, Audrey and Elise and I played Hot Potato with a ball on the kitchen floor...then of course we had to play pretend...Martin was the teacher, and Audrey and I were the students. Elise, of course, lost interest in that. Anyway, the house is still a wreck, the 98 socks that we own are still in a basket waiting to be paired, clothes are still in the washer...and the dryer...and the baskets...and the couch...and the hampers, but who cares?? My girls got the time they needed from their parents. Lydia of course slept through most of that, but she and I had our massage time and a little therapy...not so fun for her, but she did really well, especially considering how miserable she still feels. Please continue prayers to relieve her congestion.

The paperwork for Atlanta has turned out to be more than I anticipated...still working on it...got lots of info today....made about a gazillion phone calls to doctors, nurses, etc. It is in the making, and should be mailed out by the end of the weekend...hopefully along with all of her medical records. I went to dr wood's office today to sign a release...I may need to do that for her other doctors too...I'll get to that as soon as I can.

I've been hesitant to share our newest stresser...not sure why....just not ready to face another road block, but I'm feeling so safe now in knowing that God will get us past it no matter what the outcome... At Lydia's appt with Dr Guidroz on Wednesday, she started to ask some questions about Elise. Elise was not with me, but she knows our family well...has seen my girls many times when Dr Wood couldn't. She is very sweet. She said that she thinks about Elise all the time and wondered if she had ever been tested for MPS disorders. She had a patient with it when she practiced in Georgia, and Elise's facial features remind her a lot of the little girl. Elise has not been tested for that...of course I went home and got on the Internet to get a little more info. I am not at all convinced that Elise has this disorder, but I do think it is worth checking out...especially since she told us that it only requires a simple urine test to check for it...and it is very serious...we would need to know if she has it so that we can watch for certain problems. I called Dr Superneau's office yesterday, and he called me back this morning. He said that he is of the mindset that if a disorder comes to a dr's mind for a patient, it is worth testing...especially since the test is not invasive and not expensive. So, I went to the Woman's Hospital today to pick up some urine bags...we will go back MOnday morning to bring a urine sample. He said that the results should be back by the end of the week. Dr Superneau's explanation of the disorder (as I understand it...which may not be saying much): the body is not able to process some compounds correctly because particular enzymes do not do their jobs correctly. This causes these compounds to build up in tissues in the body. The enzymes that are not working properly determine which tissues have the build-up. If it is in the joints, patients have stiffness of the joints. If it is in the liver or spleen, patients have enlarged livers or spleens. If it is in the heart, patients have heart problems, etc. So, if the urine test comes back abnormal, there would then be a blood test to determine which enzyme was not doing the job....which would provide info about which parts of the body to direct your attention. He also said that there is a chance that the urine test could be abnormal, and that you never find which enzyme it is...if it is not one of the most common ones and is not a testable one. Just lots of questions really...but, again, I choose not to worry about this until I have to...which of course, is never... because God will carry us through just like He always has and always will. I just ask for your prayers for this situation too.

And I'll end with the prayer that Stacy posted today...so simple, yet so powerful!
Your Will...nothing more, nothing less, nothing else. Amen.

Hanging in there

We are all hanging in....Lydia's congestion is just as I suspected it would be...full force still. Hopefully, she will get some reprieve soon. This morning, she took 3 1/2 oz...that is really good considering that she hasn't taken more than one or two at each feeding for the last couple of days.

Audrey and Elise also have the cold...not so bad. They just seem to need their momma more when they're feeling sick. Too bad there's just one of me and three of them. It's tough for all of us that I am outnumbered. I'm having a little rough time lately...a few tears here and there...just trying to keep up with it all. So many things to do...not enough time (or energy) to do them. So many things to remember...I can't really even keep my mind straight enough lately to make lists to help me get to it all. Phone calls, paperwork, therapy (not to mention housework)....I'll get there. I just don't feel lately like the momma that I want to be. My girls need my time, and they can't understand about all the other things that take up my time. I feel stressed and overwhelmed and guilty for taking it out on them sometimes. That makes them stressed too...and their precious innocent little minds don't need that. Please pray for me...to give my worries to God and to concentrate on what's most important....and to relax!!

No more ACTH shots!!! Yesterday was the last day!!! Party time!!!

Working on the 20 page questionnaire for the doctor in Atlanta...I have to call my OB today to find out some things about my pregnancy...and Lydia's dr's to answer some questions. I hope to send that off today.

Elise's first day at BR Speech and Hearing went great!! She walked right in like she'd been there forever. I think she had a great time!! Ms. Meg (her teacher) said she did lots of talking...I feel so good knowing that she is in the right place to get what she needs. Yeah for Elise!

Call from Atlanta

I did get a call from Atlanta today...they sent me a packet by email to fill out and fax back to them. We also have to get our pcp to fax a letter of necessity and written referral for services in order to insure insurance payment...and send 6 mos. of medical records (Lydia's whole life). After they receive the packet and other information, dr schoffner will review her information (which should take about 48 hrs) and decide whether she needs just a consultation or a consultation and a muscle biopsy. Then we will be able to schedule our appt which will probably be just a two day affair. There is not a very long wait time, so I predict we should be able to go in the next couple of weeks.

Terrible congestion continues...saw Dr Guidroz this afternoon. She did a sinus x-ray to be sure that it was not a sinus infection...just a cold..thank goodness! Please continue to pray that she feels better soon...she's pretty miserable right now. Still not eating well at all...only 1-2 oz at each feeding. Thank you for your prayers about this.

Tomorrow is her last ACTH shot!!!

Elise will start her first day at BR Speech and Hearing. Wish her luck!

We will also go to Woman's for a blood test to check Lydia's thyroid levels.

Lots on my mind...many phone calls to make and things to line up...having a little rough night, emotionally...will reflect later...my brain is on overload right now.

Congestion Strikes Again

Some of you may remember Lydia's battles with congestion in the past...when she gets it- she really gets it. She sounds like an adult snoring when she breathes. She is terribly uncomfortable and is now refusing to eat. Hopefully, her next feeding will be better. This time, it really came on all of a sudden...though her sisters have had a little stuffy nose for a couple of days. But a difference this time...she's running a little fever...100.5 degrees. I'll probably take her in to see Dr Wood tomorrow if she is still running fever. PLEASE pray that this bout with the congestion is short-lived...it usually lasts 2-3 weeks with her.

Phylis called today. Elise's lactic acid came back normal...that is great news! They still don't have the pyruvic acid results, but Dr Hollman predicts that it will be normal too. Phylis also said that she called the clinic Atlanta....she also had to leave a message. Hopefully, they will call one of us back soon.

News about Elise-
We visited the Baton Rouge Speech and Hearing Foundation this morning to try out the language groups that they have...small groups of children with speech delays taught by a speech therapist with extra LSU student workers to assist...it is sort of like a preschool setting....they have story time, snack time, puzzles, outside play, etc. But, all activities are focused on getting the kids to communicate more. I was under the impression that I was visiting to consider bringing Elise there for the summer or fall. Well, as it turns out, she'll be starting there on Thursday. I am really excited for her...I think she'll really like it...she fit right in today. I saw a real difference between the way she responded with that group of kids and the way she interacted (or didn't interact) with the kids at her Mothers Day Out program. I think she was really intimidated by the fact that their speech and communication was on a completely different level than hers. I am a little sad about the fact that we'll have to leave Mother's Day Out...the programs are at the same time: Tues and Thurs mornings. However, this program is only 2 hours...9-11:00, but I think it will be worth it. I have loved the Mother's Day Out program where she was though...it is really top notch, and her teachers were very willing and attempted to modify their interaction with Elise to facilitate a better communication experience for her. However, they are not speech therapists, so they can only do what they are trained to do. We really loved her teachers, and gladly recommend their program to any one interested...Broadmoor Baptist.

Please pray that all of our girls will beat this congestion soon. Love to all!

Still waiting

I left another message at the clinic in Atlanta...I also called Phylis (Dr Hollman's nurse) about it. She said that she would take care of getting us set up with them. I told her that we would take the earliest appointment that is available. She was waiting to get Lydia's chart back from Dr Wood this afternoon, and then she was going to call them. Hopefully, we'll hear something soon.

Lydia's 6- month check-up:
13 lbs. 8.5 oz. - 10th percentile (same as it has been)
23 3/4 in. - 3rd percentile (less than it has been)
Head circumference: less than 3rd percentile (same as Dr Hollman's chart showed)
I told Dr Wood that Lydia's appetite has decreased lately. I am having trouble getting her to finish her 4 oz bottles. I remember that Dr Hollman said that the ACTH shots would increase her appetite...maybe since we are weaning from them, her appetite is decreasing...not sure. Hopefully, it doesn't affect her growth.

Elise:
She has been talking so much lately!! She had a minor ear infection last week, and we started drops on Friday. Her mood has definitely turned around....much less whining and crying...many more words...putting together two and even three word combinations. Yeah!!

Audrey:
I'm noticing that Audrey has a nose-dive in behavior after we've been somewhere that I'm talking a lot to someone about Lydia and Elise's conditions, therapy, outcomes, etc. I think she may be feeling a little left out. I'll have to watch what I say in front of her. I want her to feel like a very important part of our family too...I've lately tried to make it a point to talk about her "stuff" too...her birthday, soccer, and all her accomplishments (she has so many:). I need to pay close attention to this...she deserves lots of attention too!

Thank you for your continued prayers. As always, we truly appreciate it!!

Busy Weekend

We have had quite a busy weekend...basketball game - Friday night...lost by one. :( The team played very hard, but it was heart-breaker. Saturday...Audrey's birthday- 4 years old!! Soccer game in the morning...party in the afternoon. It was great fun!! Sunday...Audrey and Lydia and I went to church and to some friends' birthday party at Bouncing Tigers. We all had a super time!

Still no word from the dr's office in Atlanta...left a message on Thursday; called twice on Friday. I will call again tomorrow and call Dr Hollman to see if she can get a hold of them for us. We'll update when we have some arrangements. Thanks for all the offers of help...beware- we might take you up on them! :)

Grateful for this blog...
This blog started out as an efficient way to disseminate information about Lydia's progress and medical updates...oh how much more it has become! It has been such a therapeutic experience for me to be able to get out all of my thoughts and feelings. I feel so uninhibited when I sit down to type, and I feel such a release when I get it all out. The feedback that I get is so very helpful...sometimes just knowing that "you're there" and that you're listening means so much! The prayers!! I feel so blessed to have so many people praying for us, and especially for our dear Lydia. I really feel like I have a direct link to God...I have seen so many of our prayers answered when I've asked you to join us in prayer. I know that there are so many people reading this whom we've never met. I've heard from friends of friends (of friends of friends...)who don't know us, but feel a special connection to our family. To these people...thank you for listening to our story and praying for our little angel. So many people have told me that they wake up to our updates or read it just before bed each night...I am really touched by your dedication to us. I know that God is watching and listening...and maybe this is just what He intended...for indeed, we are "the body of Christ."

Lydia has a six-month check-up tomorrow with Dr Wood...can you believe it? She is six months old...today!! How time flies!! She's been attempting to eat some baby food this week...squash. Some days she's been not-so-interested, but a couple of times she really enjoyed it. We'll try some rice cereal and then some sweet potatoes next. I've been proud of how she's done so far...better than I expected.

Have a great week!

Test Results

Dr Hollman called this morning when we were at PT...I called her back when we left.

First conversation with Dr Hollman:
Pyruvate was elevated again...both lactic acid and pyruvic acid have never been normal each time Lydia has been tested (4 times, I think). She had talked to both Dr Superneau (geneticist) and Dr Wood (pediatrician) about these results...they feel that it points to a mitochondrial disorder, though it is not definitive. The plan was to retest some amino acids that were tested when she was hospitalized at 5 weeks. These results would not necessarily give us much information...some mitochondrial diseases would have normal levels of these tests; some would not. These results would just possibly narrow down the possibilities in the field of mitochondrial disorders. Then we were to see Dr Superneau in a month when those results would be in. The next step would be to go to Atlanta where they have a specialist in mitochondrial diseases to do a full work-up to find out if, in fact, Lydia has a mitochondrial disorder, and, if so, a specific diagnosis of a particular mitochondrial disorder. Dr Hollman emphasized that mitochondrial disorders are very hard to diagnose...it is a long and involved process and can not be done here in Baton Rouge. She said that she does have a couple of patients who have been diagnosed with a specific mithochondrial disorder, but it is very possible for us to find out that it is mitochondrial- but have no specific diagnosis. It is all very confusing, I know...Dr Hollman said the same thing...basically, there are several different mitochondrial disorders...each with its own outcome. My questions: "Why waste our time with the blood and urine tests here since it would not give a definitive diagnosis...and the doctor in Atlanta could probably order these tests too...? Is there a sense of urgency...should we wait a whole month for these results if she may be able to take some type of medication to make her condition better than it would be without meds? What are the chances that her levels will have changed since the first time anyway?" Dr Hollman thought that these were all pertinent questions, and she was glad that we had a chance to talk. She wanted to talk to Dr Superneau about it to get his opinion before making any decisions. I told her that I trust her opinion more than my own, but it just struck me as something to ask about.

Second conversation with Dr Hollman:
Dr Superneau agreed...he was satisfied with not doing more tests here. Our new plan: call Dr Schoffner in Atlanta to schedule an appointment for a full work-up. Dr Hollman said she feels it is worth it to do this million-dollar work-up because Lydia's collection of symptoms suggests that it could be mitochondrial. She said that she would do it if it were her child...that's enough for me. Then, I asked her about something that some family members had brought to my attention after doing their own research: mitochondrial disorders sometimes appear in more than one child in a family. I asked if Elise's issues could possibly be related to mitochondrial disorder. She felt pretty sure that that wasn't the case since her symptoms are clearly very different from Lydia, but she thought it couldn't hurt to at least ask about that when we go to Atlanta. As a preliminary, she decided to order a test of Elise's lactic acid and pyruvic acid since this has never been tested before. She said that if those results are normal, she would drop the idea right there. I feel skeptical that Elise has mitochondrial issues, but I agree that it is worth doing a simple blood test to rule it out for sure.

I called the clinic in Atlanta...got the answering machine...left a message...will wait to hear back.

Elise's blood test is scheduled for tomorrow...along with an appt with Dr Wood for a possible ear infection...again. Please say a little prayer for Elise for her blood test...she's always been very brave for those, but it has been a really long time since she's had to do it...I suspect that she'll be a little afraid.

PT Today:
Great!! Susan was very pleased with the way that Lydia was able to hold her back straight in many different postures. She got her to hold herself up with her arms...head up...smiling at herself in the mirror! It was the most beautiful thing I had ever seen...absolutely the best job holding her head and upper body up! She gave me some ideas for stretching her back to help elongate her muscles. We also talked about how massage has greatly affected Lydia's progress. She said that Lydia convinced her that she needs to do some type of massage with every client who walks in her clinic. I know that it has helped Lydia tremendously. I was very proud of her work today!! :)

No News

Just a quick update to let everyone know that I have not heard from Dr Hollman's office yet.

Everything going well...

Martin's team made the playoffs and play Istrouma this Friday night! Go Broncos!!

Celebrating the improvements

A couple of weeks ago, I was feeling discouraged and talked to Susan (PT) about it. I just felt like we had been working with Lydia on the same thing for quite a while without reaching that goal: picking her head up in prone position. Stephanie told me that I should think about all the things that she has accomplished...that has finally soaked in, and I am remembering where Lydia started and feeling grateful for how far she has come. Stephanie suggested that I keep a list of all of Lydia's improvements to help keep the positive attitude. Here's my list:
-better head control; she holds her head up for short periods when she is vertical (on a shoulder or sitting position)
-smiling!!
-cooing!!
-cackling!!
-picking up her head in prone position 4 times! She has not mastered this skill, but I have seen her do it on 4 different occasions...half of those times has been right after a massage...that can't be a coincidence.
-eye contact; It is now unmistakable...I wasn't sure for a while, but now I feel the connection between her and me when she is looking at me.
-much stronger suck; I was so relieved when we were able to switch to a real nipple (not cut by me)...we are now starting to draw back some of the mouth support that we were giving to help her to suck better...she is doing so much better on her own.
-so much more relaxed and happy; This has been the biggest blessing! We remember that it wasn't so long ago that we knew if Lydia was awake, she was crying. There was only one position of comfort for her: lying on her stomach on my chest. When I think about those days, I can't help but feel so incredibly thankful for the smile that I see on her face now.
-no more infantile spasms
-interaction with others; It is so much fun to see her respond to other people, especially her sisters. I remember when she would sort of freak out when they would even get close to her. She couldn't stand sudden movements, loud sounds, abrupt touches, etc....all things that made her not so happy to be around her sisters. Now her face lights up when Audrey starts to talk to her or sing to her. It is awesome!

So much to be thankful for!! Thank you for your part by offering your prayers and support!

OT Visit Today:
It was great!! Teresa fed Lydia first when she arrived...Lydia took a few little breaks (dozing off sometimes), but still finished the 4 oz in about 20 minutes. Then, Teresa was able to get some really great work in with her...the first time in a long time (Lydia's been so sleepy the last few times). I told Teresa that I've noticed when I work with her that it helps to give her short rest periods (even as short as 1-2 minutes) when she starts to cry. That's what we did today, and it really worked. After each rest, she would get happy again and tolerate more. Teresa suggested putting her in a sidelying position sometimes to help orient her with her midline. We did it a little today, and she didn't seem to mind very much. I was really impressed with the way that Teresa was helping her to roll over...Lydia did much better than I expected. Teresa said that Lydia was doing about 50% of the work ...Wow! We also talked about starting her on some vegetables...can't wait! I have some squash that I think I'll try with her tomorrow. I hope she likes it! She's been doing so-so with the oatmeal by spoon...it just isn't fast enough for her. I usually have to give a few spoonfuls...then let her have about an ounce from a bottle in between. It is still not her favorite...hopefully the new flavor of veggies will help.

Still no word on the pyruvate...I called Phylis (Dr Hollman's nurse) today and she said that they haven't gotten any faxes about Lydia. She was going to call the lab to be sure that the results weren't available...she never called me back, so I assume that they weren't in yet. I'm not really surprised...the first time we had these tests done, they told us it would be about 3 weeks before we got the results. We ended up getting them in about a week, so I was really surprised when she called with the lactic acid results last week. I'm expecting to hear in the next few days. I know that everyone is as anxious as I am, so I promise to get to the computer as soon as I can.

The Power of Prayer

Thank you all so much for your prayers....I am in awe...Lydia has been such a pure delight the last couple of days! No crying during feedings for most of yesterday and all of today so far!! Please continue those prayers. She has been such a fun and happy baby. We had a ball at last night's game...a win!!!! Lydia talked and smiled and cooed the whole time...passed around from arm to arm and loving it...so did the rest of us...Granny, Papa and Ms. Tonita. My heart is so full of joy right now...all is right with the world! Lydia and I had a super time at massage class this morning...Sue Sue said Lydia gets the prize for most class spirit. It was so funny...it seemed that when she thought people weren't listening, she just got louder...assertive...I like that! Daddy reports that Audrey had a great time at her first soccer game. He said it was lots of fun to watch her run around on the field...though he says he's going to work with her to become more aggressive...she's not even 4 yet...only a coach! :) He says that Elise had fun too!

A Daddy's Love:
Martin bought Valentine's cards for each of his girls for Valentine's Day...each very suited to their personalities and a special hand-written message to each of them...enough to melt a momma's heart right there. But his message to Lydia really touched me. I've read it several times and haven't had a dry eye yet. Daddy's words to his precious baby girl on her first Valentine's Day:
Lydia,
You have so much love from everyone I know! You are an inspiration to all of us! And you are the strongest person I have ever known! I love you very much!
Daddy

I've thought a lot lately about the bond between a mother and a daughter....the bond between a daddy and his girls is just as special. Oh...how lucky they are to have him. Just more proof: God knows what He's doing!

Elise's speech therapist and I talked yesterday about the problems that the "Yes, mam" and "No, mam" have created. She says it all the time now...except that they both sound the same...it sounds like this: "eah, mam, mam, mam, mam, mam..." you get the point. :) She does nod her head as she says it, but she has not perfected that either...it's sort of a crooked nod that could also be yes or no. It has been a challenge to figure out...working on clarifying it.
A funny story:
Everyone with Elise lately has noticed that she says it all the time. Audrey asked her yesterday if she wanted some juice, and she said, "yes, mam." Audrey looked at me with a sheepish grin... "She said yes, mam to me!" How funny!!

Eating better

Most of Lydia's feedings have been better lately...though still a little unpredictable. Thanks for continued prayers about this. Kristy was at our house the other night while she had her first bad feeding in a while, and she asked if I thought the medicine (reflux med) helped with this...and I told her the thing that has helped the most has been prayer...it's been better than any medication we've tried. No surprise! :)

We have a busy weekend...Audrey has her first soccer practice tonight and her first game tomorrow morning (if the weather allows). I plan to watch the Broncos play their last district game tonight....very important: the winner goes to the playoffs; the loser stays home! It shall be exciting! Lydia and I also have our last massage class in the morning...so Grandma and Paw-Paw plan to take Audrey and Elise to Audrey's soccer game. I hate to miss it, but I guess that's what happens when you have 3 kids...can't be in more than one place at a time!

Have a great weekend, everyone!

Feeding problems...again...

Last night, Lydia had her first crying spell while eating in a long time. She was obviously in pain...probably from gas. We tried mylocon and massage techniques to try to soothe her, and it seemed to help some. She went to bed around midnight, and surprisingly slept until almost 7 this morning. Then, her first bottle this morning, she was very reluctant to eat. I thought maybe she remembered how it hurt last night and was afraid. She did have one bottle today that she did not cry through, but we've seen a good bit of gas with most of them. Just when I was ready to say, "Thank God...that's over!" Please help us pray again for comfortable feedings.

We (or should I say, "I") had a good visit at Brusly Elementary today. Lydia slept through the whole visit...then as soon as I got her to the truck she woke up and started cooing and smiling. She's just shy I guess. It was so nice to see everyone and to show off my girl!

One of the ladies at BES told me today about a family member of hers who had a baby yesterday...and the baby died. What a tragic story. I've had trouble getting it off of my mind since then. Stories like that really make you stop and think how lucky and blessed we all are. Please join me in praying for her family...I can't imagine how difficult that could be.

I promise to let everyone know as soon as I hear from the doctor about the pyruvate level. I know that everyone is anxious to find out.

Happy Valentine's Day to all!

Today's Report

I appreciate all of the loving comments from yesterday...it helps more than you know. Alicia- I think I will wear my crown (inside joke!)... then I can be anything I want to be! I know that God has a plan for all of us, and I trust that He will guide us through...just like He has done so many times before. I can't imagine getting through any life without Him...I pray for all the people who do not have God in their lives.

Though I am trying not to think about any of the tests or results or outcomes, I can still feel some of the stress on my body. I think mental and emotional exhaustion leads to physical exhaustion...not to mention that Lydia has been getting the urge to eat in the middle of the night again...that wears us both out. I will continue to pray for God to lift the weight from my shoulders...I have faith that He will.

Today has been a good day...Lydia has been in a really good mood for the most part. It is so much fun to enjoy her. I have two little special helpers here too... when we got home from Elise's speech therapy this morning, it was time for lunch and for Lydia to eat. So (close your eyes, Martin) I asked Audrey to start giving Lydia her bottle in her car seat while I fixed the big girls' plates for lunch. I watched her closely as I got the plates ready and could tell that she was doing a good job. When I finished, I walked over to them and Audrey said, "She doesn't want this anymore." That was because she had already taken one whole ounce and was ready to burp!! If you've ever tried to feed Lydia, you can appreciate what a big accomplishment that is...it is no easy task, because you have to hold her cheeks in a way to help her to suck better. Audrey could tell I was excited when I said, "You fed her a whole ounce!"...she asked, "Is that great?" Of course it was! Then, as I was taking her out of the seat...Elise was there to pick up where Audrey left off, with a burp rag wiping Lydia's mouth ever-so-gently. If you've ever seen Elise with Lydia, you can appreciate the "ever-so-gently" part...that's a real accomplishment for her!

Still no word on the Pyruvate level...I'm sure they'll call as soon as it's in.

Test Results

Dr Hollman's nurse called today...the lactic acid level was elevated again. Dr Hollman told her that this may suggest mitochondrial disorder. They have not yet received the results of the pyruvic acid. If that level is abnormal, we will schedule a spinal tap for next week. I don't have any information yet about why she'd order a spinal tap...that's the first I've heard of that. I'll ask more questions when I can talk to Dr Hollman herself..and when I know for sure that we're doing it. She said that they would let us know the results of the pyruvate as soon as they get them.

Thanks for your continued prayers.

Need for strength

I am writing today to ask for your prayers for me. I am feeling weak and pray to God to give me strength. I was so worried about that blood test yesterday that I was not thinking about beyond it. Now that that has gone well, I now have bigger things to worry me...the results...and the tests to come after that...and those results. I was so ready to have some answers that now that they are near, I don't feel quite so ready. I feel the stress permeating my body...just sort of worn down. I broke down a little to Martin last night, and he suggested that I re-read some of the words I've written in this blog...he says that he gets some of his strength from me. I still believe with all of my heart the things that I have written...Lydia is somebody special created perfectly by God...she is absolutely perfect no matter what any test result shows. I feel strongly about that. But, I've had this feeling lately that God is preparing me for death...songs on the radio...watching Audrey sing lullabies to Lydia, "Lydia, rest your head. Go to sleep." It has brought thoughts that I am not ready to have. I was talking to a friend on the phone the other night who asked if any of the possible syndromes/diseases could be life-threatening...I told him that one of the possible diseases can be fatal. Saying those words out loud really took a toll on me, I think. I have until now successfully taken one day at a time...not even thinking about what the future may hold. One quick scan on the Internet of the possible diseases that day in December is all I have done to research the possibilities. I've had a distinct feeling that it would not be good for me to know anything about that until I absolutely needed to. Since I feel that time getting closer, it is starting to invade my mind and my body. I want to get back to the place of no worry...I know that God is here to take my worries away. I pray for Him to help me to let them go. I am a better mommy and can enjoy all of my girls much better when I give my worries to God.

We expect the results of yesterday's test in a few days...possibly a week. Those results will not give us a diagnosis...they will only direct what the next test will be.

Thank you for your continued prayers.

Prayers Worked!!

Thank you all for your prayers for today's blood test...God was listening...it went very well! We got a call this morning that it could not be done at our home, so we had to go to a lab to do it. As it turns out, the tourniquet could be on for the test...little did I know. We went to the Woman's Hospital this time (all a part of God's plan....because we almost went to the Baton Rouge Clinic again...the only reason we didn't is because the home health nurse did not fax the orders like she said she would). No one at Woman's knew anything about doing the test without a tourniquet...I put up a huge fuss about it because I wanted to cover all bases to be sure that Lydia would not have to repeat this test...she's had to do that enough lately. They sent in the supervisor to talk to me about it...I said that I would not be comfortable with it until I talked to Dr Superneau to be sure. I called his nurse and he was working in Houma today. She paged him and called me back after she asked him about it...the deal was: the question is not whether the tourniquet is too tight....it is that it can't be on for too long...which means: it can be on to draw the blood as long as it doesn't take a long time to search for the vein in advance...Alleluia!! If only I had known that the three times before that we had this test done...I just assumed that the lab at the clinic was right about not using the tourniquet. The supervisor at Woman's explained this to me: if there is no tourniquet...when you put the needle in the vein and draw with the syringe, it creates a vacuum which collapses a baby's tiny little vein and there is no way to draw the blood. The tourniquet helps to keep the blood flowing so that doesn't happen. That explains why the techs at BRC would say that they knew the needle was in the vein...they just couldn't understand why the blood would not flow (the vein was collapsing). As a result, they had to stick her about 4 times in order to get it successfully. The tech today stuck Lydia ONE time...very easily...and drew the blood. Lydia was barely bothered by it at all! :) Then, the vein stopped bleeding..and she needed just a little more, so she did a heel stick to get the rest...Lydia did not even flinch! I felt proud of her for being brave, but I also felt sorry for her because it seems she's getting used to it. :(

Thank you all again for your prayers! I know that the events of today were no coincidences...just answered prayers. Thank you God!

Trip to the Zoo

Martin and I took all of the girls for a fun day at the zoo today (along with half of Baton Rouge...very crowded, but a real good time for us all!) Elise's favorite were the little tiny deer-like animals (they were called Dik Dik)...it was so cute...she kept putting her hands together and giggling while she was saying something...I think I figured out that she was trying to talk about how they were so "little." She also liked immitating the sheep in the petting zoo...as long as we didn't get too close. Audrey was excited about many of the animals, though she really enjoyed being hands on...petting zoo and feeding the giraffes. Of course, when we asked her favorite part...she said, "the playground." Lydia was just laid back...strolling...along for the ride. We all had a super time, and they've crashed hard tonight. :)

A cute story:
We were a little behind schedule tonight, so I was thinking of skipping Lydia's massage...I was ready to change her into pajamas and feed her. But, as soon as I got her clothes off of her on the changing pad, she started smiling and cackling...I knew she was anticipating the massage to be next. Of course, I couldn't skip it then! She loved it, as always! She is just not so sure of the new strokes that we learned at the last class: the back and the face. She doesn't like to be on her tummy, so she gets a little upset about that to do her back. Then, she has a real problem with her face...I think she doesn't like me in "her space." I'm going to continue to try to ease her into it, but I won't force it...it is supposed to be relaxing for her...and me...it's one of my most enjoyable moments of each day. :)

Please don't forget to remember Lydia tomorrow for her blood test...it should be a little before noon. It is really important that she doesn't get too upset during the test because it could affect the results. Please pray that it goes smoothly. THANK YOU!

My Sweet Girls

Another good day...hooray!! Lydia and I went to massage class this morning. She loved it, of course! She gets everyone's attention there because she coos and squeals the whole time...it's easy to fall in love with her! Today we turned the babies over to massage their backs...I had her on a pillow across my lap...as soon as I turned her over, she picked up her head and upper body like it was old hat to her. I yelled at Susan to look at her because I couldn't believe it. She was excited too. She didn't do it again while I had her there, but I was sooo proud to see it even once!

A sweet story:
This morning, Lydia woke up at 7:30 (Yeah! She's been doing this often lately!) and I gave her her Levoxyl. She has to wait 30 minutes to eat after that, so I went back to lie down in my bed (with the rest of the crew that was there....Audrey and Elise found their way into our bed at 5 this morning...) At 8:00, I got up to go fix Lydia's bottle and she started to cry while I was still in the kitchen. What I saw when I got to her room almost brought me to tears...I went to get Martin out of bed to see: Audrey was standing in front of Lydia's bed playing her guitar and singing to her...Lydia had stopped crying and was just watching her. It was so beautiful! Audrey got a little embarassed when she saw us standing there watching...we sounded excited, and she thought we were laughing at her. We explained that we just thought it was very sweet...we weren't laughing at all. A little while later, I was changing Lydia's diaper, and I told Audrey again how wonderful I thought it was that she was singing to Lydia to make her feel better. She said to me, "I was singing the gospel song...and I was thinking in my head that Maw D was watching me." I was speechless. For those of you who may not know, Maw D was my grandmother...she died the day that we found out we were pregnant with Audrey. Her name was Betty Lou, and so we named Audrey- "Audrey Betty." We talk about MawD some, but not nearly as much as I should. It always amazes me the way that Audrey talks about her like she knew her. I always forget that they never met. I have no doubt that Maw D was watching her today and feeling just as proud as I did.

My sweet Elise and her growing language also brings me so much pride. She is connecting words more and more to communicate...it is so exciting! Even Martin commented today that it is fun to see her communicating using words...we realize that she sounds more like a 15-month old than a 2 1/2 yr old, but we are so very proud of how far she has come!! We were playing outside today, and she was trying to get her bike out of the shed...she came to me and said, "bike...help...stuck" (in a way that few of us could understand, probably...but I don't mind being a translator for people who don't understand her) I said, "You want me to help you get your bike?" Her face lit up when she knew I understood her....she said, "Yes, mam." I never get enough of hearing her say that...it is sooo cute!!

Good Day

Today was another good day...somewhat uneventful. She has still been eating so much better...thank God and all of you for praying specifically for that. She had spurts of fun, but not as much as yesterday. I am still a little amazed by her attitude yesterday...still keeps me uplifted.

Specific prayer request:
Lydia will have her blood drawn on Monday for her lactic acid and pyruvic acid levels. You may remember the last time we checked that...months ago...it was quite an ordeal. It must be taken from the vein...not a heel stick like her weekly tests. One of the tests requires that it be done without a tourniquet. It is very difficult to get the blood to flow...the only thing that finally helped the last time was when the lab tech started to pray to Jesus while she was attempting it. I thought I might ask for some prayers in advance so that it is as painless as possible...for all of us.

Thank you for all of the encouraging words I've heard and read today! Love to all!!!

What a Fun Day!

It is easy to wake up at 5 am when you get to wake up to this:



I thought you might enjoy seeing this precious smiling face...I hope it brightens your day as much as it brightens mine! God is so good...He continues to teach me appreciation. When Audrey and Elise were this age, I could see these kinds of smiles all the time...I loved it! But, something about the rarity of it makes it so much more precious!!

Lydia and I have had such a fun day today...she woke up with those smiles, and she has been happy ever since! Her only down time was at PT with Susan...boy, has she got these therapists' numbers! She was fast asleep for most of the therapy session...a re-run from OT with Teresa on Monday. I am joking when I say this, but it sure seems like she decides that she is not going to work...and off to sleep she goes.

This little girl knows just how to make me forget my worries...thanks to all of the people who got the brunt of my venting yesterday morning...Jennie, Jory, Mom and T. I got a call from a nurse with Home Health...they had to re-draw blood from Monday's blood test because the blood clotted....again. I was pretty livid about it....the third week in a row. But, I have to just let it go...The results were good, so that's what's important. Dr Hollman and Dr Wood were both concerned with a low CO2 level that she had for last week's test. That could be a sign of acidosis, and she had never had a low level before. This week's test returned to normal, so they are not really concerned about it anymore. Thank God! They said that if she cries during a test, it could effect the level...of course she cries during the tests, so hopefully that was the reason. I'm sure that they will be watching it closely.

I put a call in to Dr Hollman yesterday about Lydia's jittery behavior Tuesday night. To re-cap: she had some twitching in her hands and arms, she was terribly irritable, and she was very easily startled...could not stand sudden movements. This was exactly her personality early in life. I had assumed that either the ACTH or maturity (or a combination of both) had calmed her. We wondered if it might be withdrawals from the med: it's not. She said that Lydia would not have those kinds of behaviors as withdrawals from it...the things that we look for when weaning from the ACTH is a change in blood pressure or the presence of infection. That is why she has her blood pressure checked 3 times a week and blood drawn once a week. Dr Hollman said that we need to watch this behavior closely to determine for sure if the startles are truly caused from some outside stimulus. It may be some type of jerk from her nervous system that she would need to treat with other medication. She encouraged me to keep her updated and to call her cell phone if I needed to...she said that that's the only way she'll know what's going on...I am so thankful that Lydia has her to care for her.

New homework from PT:

Susan said that we are going to start working from the bottom up. Since Lydia continues to have trouble holding up her head...we are going to try to help her to sit with support, and use her arms to hold up her upper body. She liked the way that I've been putting pressure on her lower back to help her straighten it. She gave us a large elastic band to put around her torso to sort of work the same as my hands have done...then my hands will be free to work with her from the front. I can put a boppy pillow around her for safety. We will hold her hands on her legs in front of her to encourage her to bear weight on her hands. She noticed that Lydia is pretty much only motivated by people and funny faces...toys don't really do much for her. She also gave some homework to Paw-Paw: to make a chair for her that sits directly on the ground and is custom fitted to her size. It will hopefully help her to keep her back straight and sit with support...she can use it for a while, with my help at first, of course.

Big thank you to Bridget for getting a baby scale donated for us!! Now, there shouldn't be any more doubts about whether or not Lydia is gaining...she has been pretty much continued to be on the up-swing. I'll have a lot better idea once we get the new scale and begin using it. Thanks again!

Thank you all for your continued prayers and all of the prayer lines...prayer is the best medicine! Also, special thanks to Alexa for Lydia's prayer blanket that you sent!! I try to keep it on her as much as possible...it makes me feel a little more at ease to see her wrapped in prayer...it also keeps me reminded of all the loving people who wrap her in prayer each and every day.

Hanging in there

Today was a relatively good day...pretty uneventful. Elise's ears are better! :) Audrey needs another 2-week round of ear drops to hopefully clear hers, but they are getting better. Lydia had a few bites of oatmeal today...she seemed to like it, but got frustrated with it after just a few bites. We skipped a shot today to begin the weaning process from the ACTH again. Martin and I are not really happy about the differences we see in Lydia today...hopefully it is just a coincidence...we'll see. She seems much more jittery and irritable...especially tonight. I remember that last Friday when we skipped the dose, she was fussy all evening...again, hopefully a coincidence...we'll see. She has a little twitching in her arms and hands (which we had noticed before she started the ACTH...and we noticed it to stop shortly after the shots began.) She is also VERY easily startled...which had gotten better with the shots too. Let's just pray that she continues to do better, even with the weaning of the medication.

Neurologist visit today

We had a very informative visit with Dr. Hollman today. She is such a good doctor...straight to the point, but compassionate when she needs to be. She walked in and said, "My baby." She is clearly very concerned about Lydia. She asked me some questions about her episode on Saturday and concluded that it was not an infantile spasm...it was a seizure. The difference: Infantile spasms are a certain type of seizure only seen in babies....they throw their hands up... and rest about 8-10 seconds between each time. That is exactly what Lydia's spasms looked like before she started the medication...the seizure on Saturday looked totally different. It was practically continuous for about 2 minutes. So...we will again begin weaning her from the ACTH shots because they are only intended to treat infantile spasms (which they have stopped)...ACTH will not stop other kinds of seizures. If and when she has another seizure, Dr. Hollman wants us to call her...she even gave me her cell # in case it happens after hours. She said that it probably will happen again, and will probably be very similar. It could be soon or it could be in 2 weeks or it could be in 8 months...there is no way of knowing. She will then probably put her on a different medication to stop those seizures...not an injection...fwehh! She will probably have to take the medication indefinitely...for life...to stop the seizures. She has a medication in mind to use with her...because it has very few side effects.

Her big concerns:
Lydia's brain growth has continued to slow down...now in the 2nd percentile, and she feels like it will probably fall off of the chart in about 6-8 months. Her fontonelle is also very small, which means that her brain is not forcing the bones to stretch out. Lydia's development is significantly delayed...still not holding her head up in prone position at 5 months...and definitely not rolling over. Hollman is still concerned about her up-going toes.

She was pleased with her progress with her head control and with her tracking, smiling, cooing.... she just feels like she is "way behind." She said that her condition is totally different than Elise. She said, "Elise's problems are mild...This baby has big problems."

Dr. Hollman said that she is leaning more towards a Mitochondrial disease than Rett syndrome right now...though it could still be Rett. She is ready to test for it now so that we can find out for sure...I feel glad about that. I've been feeling lately like I want an answer, so that we can prepare for, treat, and help her to reach her potential for whatever it is. She wants to retest the lactic acid and pyruvic acid on Monday when the home health nurse draws blood...if those levels are still abnormal, it would suggest Mitochondrial disease...if so, Dr Hollman would probably order more tests to make sure. A muscle biopsy would be necessary to diagnose it. She feels that it is important to do this soon because she has seen some patients do better with these diseases if they take some kinds of medications. She emphasized the word "better"...they are not typical, but better. She confirmed that Mitochondrial disease has a wide range of outcomes, but she also pointed out that Lydia's case doesn't look good so far...so that would suggest that she might be on the lower end. She also said that there is also a possibility that it may not be any of these things...it might be due to damage that occured in utero that we didn't know about and will never know about...lack of blood supply, etc. She said that for babies to develop "normally" everything in utero must happen perfectly...the "miracle" of birth is no understatement.

I asked about her mention of cerebral palsy at the last visit, and if she thought that was still a possibility...she said that it is a possibility, but it is not a diagnosis. It is just another symptom, sort of like her developmental delay and small head...it does not explain everything. What she is looking to find is an overall diagnosis that will encompass all of her issues.

So, the plan is to test the lactic acid and pyruvic acid on Monday....from there, she may order further testing. Then, at our visit with Dr. Superneau on the 28th, we will ask him to do any pertinent tests necessary to hopefully make a diagnosis. We will wean from the ACTH and finish on Feb 28th instead of the original Feb 24th. We will see Dr Hollman again in March, and she will order an MRI to look for any changes since her first MRI at 5 weeks of age.

On a good note, Teresa came for OT this afternoon...and Lydia had a little solid food for the first time!! She had a little powderized oatmeal mixed with formula from a spoon. Though she was almost asleep...she did really well. I was very impressed...no gagging, no yucky faces...wow! Teresa was also happy to see her move her tongue forward to look for the food...that will help her developmentally to not keep her tongue back most of the time.

Our other two girls:
Elise has an appt with Dr Wood tomorrow to recheck her ears...I am hoping that her infection is gone. She has been a bit cranky the past couple of days...just not herself...I hope that's not a sign. She is now using "yes, mam" and "no, mam" very frequently when she talks to me...I love it!

Audrey has a recheck with Dr Petit (ENT) tomorrow too to make sure that the fluid buildup in her ears is gone. She has been such the sweetheart and helper lately. Elise has actually been letting her take care of her sometimes. Yesterday, she set her up in her chair for snack, cleaned her up when she was done, and even put a bandaid on a little scratch she had on her neck. It is so cute to watch her take care of her...although this morning she was trying to put her in time out for stepping on the nurse's scale...that's just a little to far, I think. :)

Thank you all for your continued prayers...

Good Day

Today has been a good day for Lydia so far! She has been a very happy girl...smiling, cooing, cackling! I guess she does like being on the ACTH. She was very cranky Friday evening...for no obvious reason...that is the only day that we skipped her shot...I wonder if that had an effect on her then...? She has also been sleeping very well through the night for the last two nights...sleeping until 7:30 or 8:00, which is about 3 hours more than she had been sleeping lately. I am pretty convinced that it is a result of the increase in Levoxyl. If not, it is a pretty strong coincidence.

Today's shot:
My brave little girl did not even cry one bit for her shot today. I made sure that she had her pacifier securely in her mouth before I did it...as soon as the needle went in, she started sucking harder on the pacifier. Then, when she felt the medicine...she let out a little sigh and kept sucking on her pacifier. I am always so proud of her...and thankful to her for not making me feel so bad for giving her a shot. :)

Yesterday was pretty scary...it is so nice to see her so alert and happy! Last night, I kept calling her name and she would look right at me and smile so big...melts my heart!

A Seizure

The ER doctor, whom we really liked, confirmed what we suspected...it was a seizure that Lydia had today. What was surprising to me is that she put it in the same category as the other seizures/spasms that Lydia has had...the terms spasm and seizure seem to be used interchangeably lately...I'll try to clarify that more with Dr Hollman next time I see her. Dr. Low (ER Doctor) said that the reason Lydia let out those yells is because her brain fired at her vocal cords the same way that it fires at her arms and hands when she throws them up in a spasm. When she came in the room, she said that Dr Hollman had called her and said, "I'm sending a nervous mom and a baby that's probably ok. Take care of them." I guessed that Dr. Guidroz must've called Dr Hollman to tell her that we had called. I didn't even know that she knew anything about today...but for some reason, I felt much better about the whole situation just knowing that Dr Hollman was aware and was basically calling the "shots"...no pun intended...but that is the new order...continue with the shots as we've been giving them. They think that it might be too soon to wean her. Yesterday was the first day not to have a shot, and this seizure happened today. It is pretty discouraging considering that she didn't really have them very often even before we started the shots...now she can't even skip one dose...? Dr. Hollman wants to see us again on Monday...we have to call Monday morning to make an appt...wherever they can fit us in for the day. Dr. Low told us that if she has another episode before then, just document it to show to Dr Hollman...video documentation would probably be helpful too, although holding a video camera to tape this type of episode will be totally different than it was to tape the mild spasms she was having before. Dr Low said that we will only need to come back into the ER if the seizure disrupt her needs...if we can't feed her, if she has trouble breathing, etc. or if the seizure lasts for more than 5 minutes. This situation brings about new prayer requests...please pray that the seizures will subside so that we can wean from the shots soon.

Martin:
The Dr. at the Lake After Hours gave him a flu test...negative. He said that the flu test is only 70% accurate and only tests for strands A and B of the flu, so he did not trust the results...he felt like Martin's symptoms were the flu so he decided to treat it as so. He gave him a prescription for Tamiflu and said that he should start to feel better in 4-6 days...not soon enough for my poor husband. The doctor also said that if Martin had gotten the flu shot, it may not have made a difference, since it only vaccinates for a few strands too. As we already knew, Lydia's ER doctor said not to let him hold her or get close to her while he is sick. Please pray for Martin to feel better and for Lydia to avoid the flu.

We are also praying for all of the other sick people right now...it seems that everyone I talk to has at least one sick person in their family right now. It is a bad time...for everyone.

Thanks so much to everyone who helped us out today...Grandma and Paw-Paw, Granny, Aunt Becky and Lauren... Grandma made the comment that she is on call for all of us 24/7 and glad to be...we are so very blessed! I hope to be the same lifesaver for my children one day. :)

In the ER

We are sitting here in the ER waiting to see a doctor after a very strange behavior this afternoon. At about 12:30, the girls and I were going outside to play...I brought Lydia's baby swing outside to join us. As I was walking out with her, she threw both arms out to the side and let out a yell like a two-year old seeing a scary monster...she did it about 2-3 times. I thought it was odd, but looked at her and besides a scared look...I thought she was ok. Then I proceeded to buckle her in the swing and she did it again. Clearly, something was wrong. When she let out the yells the second time, Martin heard her from inside the house and jumped out of bed (He's been in bed sick all day...possibly the flu...we'll get back to that.) and said, "Was that Lydia??" It did not sound like a 5 month old baby at all. I immediately picked her up, and she continued doing it for the next minute or so. Martin called 911, and we waited for the paramedics to arrive. They basically weren't sure of anything, but recommended that we take her to the hospital or call our doctor. Since the neurologists do not receive calls after hours, we talked to the pediatrician on call. Dr. Guidroz said that she felt Lydia would be fine, but she didn't want to just let it go without her being seen, so she sent us to the ER at the Lake for a neuro-evaluation. Here we are. I'll try to update as soon as I can after we hear something. Changes that I'll alarm the doctors of: She skipped a day of her ACTH shot for the first time yesterday...and her Levoxyl dose was changed back to 25 mg starting today. Dr. Lutfallah's nurse (pediatric endocrinologist) called yesterday...her TSH level was mildly elevated, so that's why they increased it again.

Besides all of this excitement, she had been having a relatively good day...two feedings with no crying, happy and cheerful.

Back to Martin...we dropped him off at the Lake After Hours clinic, and his mom met us there to stay with him and bring him back home. He has been running fever with aches and chills for the last couple of days. I'll update on his progress when we hear something too.