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.
Friday, February 29, 2008
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!
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!
Wednesday, February 27, 2008
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.
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.
Tuesday, February 26, 2008
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!
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!
Monday, February 25, 2008
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!!
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!!
Sunday, February 24, 2008
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!
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!
Thursday, February 21, 2008
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!! :)
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!! :)
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