Tuesday, May 26, 2009

Splishing and Splashing

We had a nice warm Memorial Day weekend where we spent most of our time outside!  We had a pizza party with friends of ours on Sunday night and then went over to Longwood Gardens to watch a fireworks show.  We waited and waited and waited for the show to start, finally at ten minutes to ten they began and so did the rain.  It poured on us and the hundreds of other people that were there.  Three out of our four kiddos loved the adventure, the littlest one did not!

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We went to the outdoor pool on Monday evening and had a picnic with some good friends of ours who also have four children.  Between our two families we made for more than half of the swimmers there last night.  The kids had a blast and I had a night off from cooking.

We have settled into our routines again and have caught up on some much needed sleep, if only I could say the same for the laundry.  Hope you all had an enjoyable weekend too.  Enjoy the pictures! Unfortunately, we did not capture any good ones of Sophie, hey three out of four isn't bad ;).

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Sunday, May 24, 2009

We’re Home

March 31, 2009 to May 20, 2009 121

It feels so good to be home, I missed our three other kiddos so much and was so glad to see them!  I also missed sleeping in my own bed, but even more I missed having Lucy sleep in her own crib!  Our drive back was relatively easy as Lucy slept off and on for most of the fifteen hours.  As for Drew and I, it was nice to have the uninterrupted time  in the car to talk about the events of the past week.  We left Atlanta Friday morning after cleaning up our room at RMDH and packing up our car.  We were not sure if we were going to be able to leave on Friday because when we woke at around 6:45am Lucy still had dry diaper.   She was going on over twenty-four hours with no urine output!   Drew and I were preparing to take her to the hospital when she FINALLY had a soaking wet diaper!  We were very relieved to change this diaper, but are now very concerned with why this happened.  I mentioned before in a previous post that we have noticed on occasion that Lucy can get bloated and puffy and have very little urine output, but this usually goes away in about the same amount of time that it happens.   Obviously, we will be following up on this issue.

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As for her biopsy incision, it’s amazing how quickly kids bounce back, she is feeling so much better.  We only gave her pain medication for about a day (It’s working at its best in the picture above).  She is now allowed to get it wet, which is a good thing since the weather here is hot and the kids have been playing in the hose outside.  In a week or so we can remove the bandage and see how it’s healing.  She has a small bruise around the site of her lumbar puncture, but it does not seem to hurt her.  She is happy to be home, happy to be surrounded by her brother and sisters.

Our experience in Atlanta was more than we thought it would be.  Dr. Shoffner was able to give us some answers to many of the symptoms that Lucy experiences.  He does believe that Lucy has a metabolic disease, specifically he feels that many of Lucy’s issues are related to autonomic nervous system dysfunction.  I can say with confidence that when we left our appointment with Dr S.  we knew we had made the right decision to have her muscle biopsy done in Atlanta.  The facilities at Scottish Rite Children’s Hospital exceeded our expectations in every way.   Lucy was well taken care of by the team of doctors and nurses there.  Can I just say that southern hospitality is truly alive and well!

Thursday, May 21, 2009

Atlanta Day 3

 

March 31, 2009 to May 20, 2009 246

Our day truly began at midnight when we had to shut off Lucy’s feeding pump and switch her over to an IV of D-10 solution, her sugar of choice.  This is when we noticed that our little Houdini managed to pull out another IV , in her sleep mind you!  This is not the first IV that she has managed to pull, she kind of has a reputation for doing this.  Another one was placed after a few pokes. Then because  it was now after midnight and she was NPO, I attempted to perform a miracle, put Lucy back to sleep with out nursing.   This was no easy feat, in fact this was one of the things I dreaded most.   By some miracle, she realized after a few minutes that she just needed to lay her head down and fall asleep. 

All was quiet until 1:30am when the anesthesiologist came in to discuss Lucy’s medical history and how they were going to handle her surgery in the morning.  I managed to speak to him quietly so as not to wake the sleeping baby, but mind you it was not easy whispering Lucy’s entire medical history to a doctor at 1:30am while laying next to my sleeping baby in her crib.  After about an hour I went back to sleep only to wake at 5:00am to the nursing staff checking Lucy’s diaper, taking her blood pressure, and taking her temperature.  She didn’t sleep through this, and again I was faced with the task of putting Lucy back to sleep without nursing.

At 7:15am we were told that surgery was coming to take her for her procedure.  We met with the surgeon briefly before her procedure and then off she went.  We gave the nurse Lucy’s pink blanket to put over her shoulder when she took her back,  this really seemed to help Lucy handle the transition from mommy to operating room. 

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After a few hours all was said and done and Lucy was in recovery.  We were told that she was fussy but handled the surgery well.   We think that she may have given the nursing staff the impression that she was in a lot of pain because she was so fussy, but we think she was fussing more from separation anxiety from mommy than from her surgery pain.  None the less, they gave her a little something extra for the pain and brought her back to us safe and sound.  She looked flush and swollen which we were told was from the anesthesia and the extra fluids.  She was sleepy and hyper at the same time, not really sure if she should lay down or stand up and play.  It was funny to watch as she was being sleepy and silly, but after about thirty minutes she succumbed to sleep and finally laid down to take a nap.  When she awoke she was able to nurse and we were discharged exactly twenty-four hours after being admitted. 

Tonight it appears that she is experiencing some pain, but we are doing our best to stay on top of it with a little Tylenol with codeine.   We are concerned, however,  that Lucy has not had a substantial wet diaper in over twelve hours and she still looks quite swollen to us.  I spoke with our pediatrician about this and she too is concerned.  Lucy should be soaking through diapers considering the amount of fluids that have been put into her.  I pressed on her bladder per our pediatrician’s request to feel if it was distended, but she felt soft and squishy.   I brainstormed with her what we thought could be the cause of this.  She thinks that there could be something going on with her kidneys since her bladder is not full and distended.   Just when I got off the phone and were getting ready to make our way back to the hospital, we noticed that she had peed.  Thinking that things were starting to turn around, we decided to wait to take her in and instead monitor her closely.  Unfortunately, I think that she peed because I pressed so hard on her bladder because we have had no urine output since.  We are going to keep a close eye on this and if we still have no pee in the morning then we are going to have to take her in.  So if you could, do a little pee pee dance tonight in hopes that we have a ten gallon diaper to change in the morning!

Atlanta Day 2

We had a very informative day full of appointments.  I do not have time right now to go into detail about our appointment with Dr. Schoffner, but I will say that he was able to make sense of everything in Lucy’s medical history!  He is the first doctor that has been able to do this for us.  I will also say that he lived up to his reputation of being well prepared for our appointment and knew Lucy’s medical history like he lived it.  When our appointment was over, we left there feeling even better about our decision to travel all the way down here to have her biopsy preformed.  I’ve said this before, Drew and I have second guessed many of Lucy’s medical procedures,  in part because we have not been able to get many answers to her problems and also because it is overwhelming at times!

I am short on time, so I will post a picture diary of some of our events today.   We had a few minutes in between our appointments to play in the playroom at the RMDH.  Notice Lucy’s sweaty head, the weather here is cool but she seems to be having temperature regulation issues again.

March 31, 2009 to May 20, 2009 212 As promised to you Alicia, here is a picture of Lucy during the resting metabolic rate test.  She did well for the first 2 minutes and thirty seconds, but not the remaining 7 minutes and thirty seconds.

March 31, 2009 to May 20, 2009 174

March 31, 2009 to May 20, 2009 178

After a comforting nursing session, she had an EKG preformed.

March 31, 2009 to May 20, 2009 182 We took a tour of the hospital after dinner last night and found ourselves some strange looking doggies and a happy turtle.  Notice Lucy’s club hand,  we cover up her I.V. so that she wouldn’t mess with it.  Even so, she was able to finagle her way out of this one and pull her I.V. out.  She is notorious for doing this.

March 31, 2009 to May 20, 2009 224

March 31, 2009 to May 20, 2009 236 I has been a while since I have slept in a crib, but that is where Lucy and I slept last night.  It was surprisingly comfortable.

March 31, 2009 to May 20, 2009 240

Tuesday, May 19, 2009

Atlanta Day 1

We arrived here in Atlanta around 7:00pm today.  All told it took us about fifteen hours with stops here and there to get a bite to eat, nurse Lucy, pick up a few forgotten supplies at a Target, and to get jolt of caffeine at a Starbucks along the way.  We left our house last night at around 7:00pm (after discussing last minute lab results with our CHOP doctors – more info later on this) and drove to Richmond,VA where we spent the night in a hotel that I reserved for us on Priceline. We got a great deal on the room, but not so much a great nights sleep thanks in part to Lucy.  She refused to sleep in the pack and play, instead she slept on me!

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Tomorrow we have a busy day ahead of us.  Lucy is scheduled for a resting metabolic rate test first thing in the morning.  At eleven we have a two hour consultation with Dr. Schoffner.  After that we plan on getting a quick bite to eat and then head over to Scottish Rite Children’s Hospital where Lucy will be admitted for her muscle biopsy which is scheduled for Thursday morning at 8am.   I hope that Lucy can tolerate this schedule, she has been a bit “off” these last few days, not really eating well and is very sleepy (home sick already). 

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We are staying at the new Ronald McDonald house here in Atlanta, it is very impressive.  The staff and facilities have been wonderful!  It really helps to take some of the stress off of being so far away from home.  We are very grateful for this opportunity!

It’s late and Lucy is looking to fall asleep on me again.  Please keep us in your thoughts and prayers this week as we are hoping and praying that all of this will give us some insight and hopefully some answers too! 

Thursday, May 14, 2009

Details

Happy Mother’s day to all our moms and mom friends!  I hope you were able to enjoy all that motherhood has to offer.  As for my mother’s day, I spent most of the day practicing  a great rendition of “Oh When the Saints” on the  keyboard with Jack for his recital on Monday.  Sitting with him was an obvious reminder of what it is to be a mom!   For the rest of my life whenever I hear  “Oh When the Saints Come Marching In…” I will forever remember Mother’s Day 2009! 

As for Jack’s recital it was an experience that will not soon be forgotten.  The atmosphere was very relaxed, all families sat on the floor which was great for us!   We sat in the back just in case we needed to entertain anyone out in the hall, if you know what I mean.  We sat with another family that we know well in music, who also happen to have four children.  Between our profoundly speech delayed baby who chose to practice using her voice while in a crowded room of  silent listeners, and the other family’s baby who just learned to make  “tooting” noises with his tongue, and Sophie who kept making her way up to the front only to change her mind five minutes later and make her way to the back again, and the other family’s toddler who insisted on getting anyone’s attention, it made for a  memorable/laughable  night.  Jen, I know you read this,  I think that we will look back on these days and laugh even harder than we did last night! 

Seriously though, Jack  did so well, which if you heard him early Sunday morning you wouldn’t believe me.  Something clicked in his head Sunday afternoon and from that moment he was marching on!  Honestly, it wasn’t that he played the piece so well, it was that he was brimming with confidence and was so proud of himself that made it such an amazing performance!  He also played excerpts from the Harry Potter Theme song that he figured out on his own with a little help from one of his instructors.   He was beaming from ear to ear, that makes a mama and a music teacher so proud!

Last night we had Sophie’s family music night where she was as giddy as we  have seen her in a long while at 6:00pm.  I’ll just tell you, she had an excellent afternoon nap.  She and I spent yesterday running to daddy’s office to deliver his computer that he accidently left at home and then to DuPont to pick up Lucy’s orthotics.  In reality these were not very interesting outings, but we made them exciting.  At Daddy’s office Sophie was able to go to the cafeteria and get a drink of water from a cone shaped cup and then get a snack from the vending machine.  This was a highlight in her day, she has not stopped talking about this.  Then at DuPont we visited the large fish tank in the waiting room where she knew the names of almost all of the fish in the tank, thanks in part to Jack brining home so many library books about fish and aquariums.  After that we ate lunch in the hospital cafeteria, which I guess to a kid is like a dream come true.  When I asked Sophie what she wanted for lunch they had it all ready and waiting.  Sophie said, “Mom, they sure are fast cookers.”

Lucy’s orthotics are the teeniest tiniest most expensive pieces of molded plastic and Velcro I have ever seen.  She is not that fond of wearing them right now, in fact she tried to take them off the entire time she has worn them.   They gave me a schedule of wear so that she can adjust to wearing them.   For now, she will not bear any weight on her feet with them on, but I know that this is just her being stubborn.  I have heard from other moms that they were just as hesitant as I am about whether or not these will actually make a difference, they have all said that they have noticed a difference in their children’s stability since wearing the orthotics.  I’ll keep you posted.

This week I am getting all of  the details of our trip worked out.  I have to say that things for this trip have come together with minimal effort, if only it could be that simple at CHOP.  Scottish Rite Children's hospital called on Monday to set-up her pre-anesthesia appointment and at this time they realized that Lucy needs to be admitted the day before her surgery.  I thought that this might be where things get complicated, but they called me back  Monday evening to let me know that all the details of her admit have been worked out, and that Lucy will be admitted Wednesday afternoon following our appointment with Dr. Schoffner.  We are planning to stay at the Ronald McDonald house near the hospital since we will be in house for most of our time there.  My mom is coming to stay with our other three kiddos which makes this trip even easier on us.  The kids are looking forward  to her coming, in fact I think they want us to leave.  I’m not sure how this makes me feel, but I do know that they will have a great time and will be in good hands.

NOTE:  I can’t seem to find the cable for my camera so I can’t post the pics I wanted to for this post.  I’ll do it as soon as I find my cable, sorry.

Saturday, May 9, 2009

Who doesn’t have issues?

Agh, where did the week go?  It can’t already be Friday?  Now, I’m in no way complaining about it being Friday, it’s just that I thought I had all week to get to my mail, and mop the floor, fold the laundry, and sort the kids clothes …. Now it’s Friday afternoon and I’m sitting here typing this post with the mop literally right next to me, the washer and dryer going at full tilt, the mail piled up so high it resembles something of the leaning tower of Pizza, and oh, the kids clothes still in piles waiting to be sorted into what fits from last year and what needs to be packed away for the next child.  I guess I need to change my weekly to do list to a daily, make that  hourly, to do list if I’m ever going to get these things accomplished.  The alternative is what I have been doing, cramming it all in on a Friday afternoon. However, this Friday afternoon happens to be the first day in nine days that we haven’t had any rain.  Oh well that’s what you get for procrastinating.  Old habits die hard!

The week was fairly uneventful as far as doctors appointments go, yeah.  I stopped into our pediatrician's office yesterday to pick up Lucy’s most recent medical records and lab reports so I have then for our trip to Atlanta, and I also took the opportunity to pick her brain about a few things that we have been noticing with Lucy.  On a handful of occasions Lucy has had a whopping weight gain of nearly a pound over the course of a day.  Her belly gets distended and her face looks puffy, she is obviously retaining fluids, but why?  We noticed this at times when she was eating solids, but not always.  She appears uncomfortable and does not sleep well when this happens.  We experienced this again with her earlier in the week.  It came and went in about the same amount of time.  We are of course going to try and look for a pattern with her to see if we can detect a trend.  Lucy  was experiencing constipation issues again this week as well as this mystery bloating episode which made for a few wicked nights of sleep!  On top of those issues she could possibly be cutting another tooth.  I told the kids that mommy really wants a nap for Mother’s Day!

We had PT and Speech therapies on Wednesday this week and I always learn so much from these sessions.  We had a very interesting PT session outside this week.  The weather was cool and dreary, perfect for our baby who can’t tolerate the heat or the sun.  Lucy’s therapists are concerned that she is experiencing sensory issues.  Ok, I’m going to come right out and admit that I am probably in a bit of denial about this subject because I too probably have some sensory issues myself.  My biggest sensory issue would be that I can’t stand to hear my baby crying from something that is obviously an unpleasant experience!   Lucy does not like to be set down in the grass, have strange feeling things in her hands, or touch her feet on the ground.  So guess what, we avoid these situations to keep her happy.  She will put her feet on the ground if she chooses to, she does pick up objects that are stuck to our kitchen floor but not outside on the driveway, and she will try as hard as she possibly can to not  touch the grass!  Apparently, we need to encourage her to try new things.  I talked with our pediatrician about this subject and she agreed that babies like Lucy that have neuromuscular issues tend to have sensory issues.  Just another thing…

In an effort to wrap this post up I am just going to jot down a few random thoughts:

  • We are leaving for Atlanta on Monday evening, May 18th. We have decided to drive down instead of fly, mainly because it will be less stressful on all of us.  Basically it boiled down to this,  driving twelve hours with a cranky baby is way less stressful than flying three hours with a screaming baby!
  • Next week we are going to experience a marathon week of music nights!  All of the kids have a music night next week.  I think we are going to be eating a lot of sandwiches for dinner.
  • We had to have a double toilet bowl funeral for our new fish this morning.   Two of them went belly up over night, not sure what is going on?  We do however,  still have one survivor.
  • I must confess that I did not finish all my jobs today because we went to the park and played outside most of the day.  I did get the floor mopped.  Some things can wait while some children can not!
  • Our kids are very tired this week and so are their parents.
  • The letter “t” on my keyboard is acting funky.  It is slow to respond, how frustrating!
  • Megan is trying to teach Sophie to ride a two wheeler every time I turn my back on those two.  Yikes, I need Drew to find and put on the training wheels for the little red bike this weekend!
  • Lucy signed the word for milk/nursing yesterday, yeah!  She is also a very eager hand clapper now!
  • Jack took a nap when he came home form school today, what’s up with that?  Whenever this has happened he has come down with something.   Although he is acting fine, was just tired.
  • Drew and I started a movie last weekend and are hoping to finish it tonight, I bet we last ten minutes tops before one of the two of us falls asleep.

This is just a few of the things things that I can think of tonight.  Hope all is well in your houses!Nov 1, 2008 to Mar 25, 2009 1021

Monday, May 4, 2009

Happy Thoughts….

I realized recently that many of my posts have been not so happy and full of hope.  All of this medical stuff can really suck the life out of you!  It can happen even to the best of us, so I am dedicating today’s post to happy thoughts!

Nov 1, 2008 to Mar 25, 2009 1090 

This weekend Drew and I  had the opportunity to go out to dinner ALONE!  Yes, you read correctly, we went out to dinner on Friday night at 6:00 pm (a normal dinner hour) all by our lonesome's!  How you ask did we manage that?  We were presented with this opportunity when I finally agreed to accept the offer of  babysitting from Megan and Sophie and Lucy’s ballet teacher.   I say Lucy too because she has attended ballet with the girls all year and has fallen in love with Miss Cherie, the girl’s ballet teacher.  We have all fallen in love with Miss Cherie, she has embraced our family this year in a way that has made us feel so loved.  The girls look forward to Thursday when they get to be with Miss Cherie, even Lucy.  Lucy puts her arms up in the air when Miss Cherie comes near her, she looks at Cherie to pick her up and dance with her around the room.  For those of you who know our Lucy, you know that it takes a very special person to be able to pick her up and not have her cry in your arms for you to give her back to Mommy.  Drew and I needed a night out more than we even knew.  That one night out recharged our batteries and helped to give us some clarity in our semi-foggy state of minds.   Thanks Miss Cherie,  for loving our kids and allowing their mommy and daddy a night out. 

Nov 1, 2008 to Mar 25, 2009 1073

Nov 1, 2008 to Mar 25, 2009 1210

This weekend was dedicated to spending time together as a  family.  We spent time together watching movies, playing outside,  taking the kids to Build a Bear, and going to the pet store to replace the fish family that we “lost” soon after they came to live with us.  In keeping with my “happy thoughts” theme I am just going to say that I hope our new fish family is a bit more durable than the last.  We have really been feeling  the need to connect with all of our kids, especially our older three recently.   It seems you blink and suddenly before your very eyes they have grown.  I have felt the need to do things with my kids recently that I have always wanted to do but have not for one reason or another.  It is empowering to be able to embrace a moment and leave all the stuff of life behind so that you can enjoy what is  in front of you right now!

Nov 1, 2008 to Mar 25, 2009 1224 

As far as the kids go,  all are really doing remarkably well in spite of all the chaos!  Jack has really surprised his Dad and I recently by waking up on time for school and getting ready quickly.   He comes home from school and does his homework right away so that he can go outside to play.  He has really stepped up to the plate this year and has become very reliable.   He continues to be an avid reader, reading the Harry Potter series now.  He is into the Jonas Brothers, my iPod,  playing Nintendo DS and Wii, Pok√©mon, Legos, tree climbing, scootering,  and playing the keyboard, he even taught himself how to play the Harry Potter Theme Song.   He is growing up so fast, but still loves for me to sit with him on the couch and snuggle up with a good book or a movie.  He loves it when I lay with him in his bed at night and talk with him about “anything”.

Nov 1, 2008 to Mar 25, 2009 1180

Megan is such a mama’s helper!  She and Sophie spend hours playing together!  Sophie misses Megan when she is at school in the morning.  Megan often reiterates, through play, the lessons that she learned in kindergarten that day.  Sophie is, usually, eager to learn and be involved in Megan’s play plots.  Megan is always eager to take a nap in the afternoon which helps to convince Sophie that napping is necessary.  I now have many afternoons when I have the three girls sleeping at the same time for at least twenty to thirty minutes, that my friends is a good thing!   Megan loves to color, paint, draw, or create something out of a simple piece of paper.  I love the way she draws people right now.  Megan is kind and compassionate, but at the same time will not think twice about squishing a bug on the sidewalk.  She loves her brother and sisters.  She and Jack have been bunk bed buddies for about a year now.  When given the choice to move back to her bed or stay bunking with Jack she chose to stay with Jack.  Partly because she doesn’t want him to sleep alone and he doesn’t want to sleep alone either.  The other part is because nobody wants to sleep with Sophie, she talks too much!  We know that this will one day be just the opposite, they will crave their privacy all too soon.  So for now, we just smile and allow them to be together. 

Nov 1, 2008 to Mar 25, 2009 1183

Sophie is always  full of thought and has a reason for why she does what she does.  It may not always be a good reason but it is a reason none the less.  Sophie makes me smile every day.  She has this look in her eye, it’s been there since the day she was born.   She is very funny, but even funnier because she has no idea that she is funny.  Did you follow that?  Sophie reminds me to slow down and to “stop and smell the roses”.   I need her in my life in more ways than she’ll ever know.  She loves playing with someone and she also loves to  play all by herself, just ask her and she’ll let you know what she prefers at that moment.  She is becoming more “regular” if you know what I mean (read yesterday’s post for more clarification) and that my friends is also a good thing!  Sophie loves dressing up, doing my hair, playing with anything messy, making a mess, going to the park, planning her next birthday party, playing with anything that is Megan’s, singing  and dancing, thumb sucking, laying in our bed at night after the big kids have gone to sleep and having extra bedtime stories read to her,  and anything that is frosted or has sugar in it.  She has the ability to make us laugh and cry all in the same moment.  She was perhaps our most needy child as a baby, but is now too independent at times.  She has the ability to do anything that she puts her mind to and for that I need to warn you, LOOK OUT.

Nov 1, 2008 to Mar 25, 2009 1203

As for Lucy, well I write about  her medical ailments all of the time, but she is really just like many other one year old babies.  She loves to be in the middle of all the action in our house.  She can clear a coffee table in no time.  She empties the laundry basket faster than I can fold the laundry and put it back in.   She is getting very fast at crawling and loves it when you play “I’m going to get you” with her.  She has no doubt eaten her weight in Cheerios.  She is extremely ticklish and has the best laugh!  She crinkles up her nose when she is being silly!   She has no words for anything yet, but is able to express herself very clearly.  She loves her “binky” but I think that Drew and I love  it more.  If you asked me what one thing I could not live without, hands down I would say Lucy’s pacifier!   She has given us the most worry of all of our babies, at the same time we celebrate all of her milestones with the greatest enthusiasm!  She has an amazing coping mechanism  that we are always in awe of.  She has the brightest blue eyes and red hair.  She loves her brother and sisters especially at bedtime when she crawls around their beds and gives them the best wide open mouth kisses they will ever get!  Lucy has taught us all to value each and every day and not to take anything for granted.  Thant alone is more than anyone could ever give! 

Happy thoughts…

Sunday, May 3, 2009

More Stuff…

Hooray for Saturday!  It has been a crazy week for our family!  Lucy had appointments every other day last week and the four kids had activities on the days that we had no medical appointments.  I am mentally drained from our week of appointments.  Not sure what to make of all of them, it appears that every one of Lucy’s doctors are just as baffled as we are.  I feel like we are by far the experts on Lucy and we need to be able to relay the important information to everyone involved in her care. It is challenging to do this at times because it often seems that doctors are either rushed for time or are not very good at listening.  A two minute assessment of Lucy does not even come close to getting an accurate description of what she is experiencing.   Friday’s appointment with her metabolic doctor was frustrating as usual.  Drew and I always leave those appointments asking one another what they understood from it.  I’m always amazed at how different our interpretation of the same appointment can be.   Basically, her metabolic doctor does not believe that we are going to find anything by doing the muscle biopsy, but said that we need to do it to rule things out.  She has a tendency to say things that she shouldn’t!   Drew and I did not come to the decision of doing the muscle biopsy easily.  Every test that we have agreed to has not come without  A LOT of thought!  We are always asking ourselves what will we gain by doing “this test” , and is there a less invasive way we can achieve the same results.  So we are again putting all of our preverbal eggs in one basket are are looking to Dr. Schoffner to give us his thoughts and opinions on our Lucy’s medical drama.  This roller coaster of emotions has got to stop soon, I’m feeling very queasy! 

Oh by the way, we had one more doctor's appointment this week that was not planned.  On Wednesday afternoon when we returned home for being at CHOP all day, Sophie was not acting like her normal happy little self.  Apparently, she was complaining of having a stomach ach most of the day and feel asleep on the floor at Beth’s house.  When we all got home, I put Lucy down for a nap and sat down to watch a movie with the kids.  Sophie asked for something to eat, since she apparently had nothing to eat all day I made her some leftover tortellini.  She took a bite or two and threw up all over the floor.  Now what I need to tell you is that Sophie struggles with chronic constipation, and yes she was indeed constipated!  So, knowing that drastic measures needed to be taken I woke up Lucy and piled all the kids in the car to make it to walk-in hours at our pediatricians.  Who knew that everyone and their sick kid was going to be there on Wednesday night?  It was so busy that we had time to eat dinner at Subway while we waited for our turn.  Thankfully, Drew took the other three kids home with him so that we would not have to expose anyone to the any number of germs that lurk in that office.  Sophie required some drastic measures for relief, a dozen or so diaper changes, some serious mama love, and I am happy to report that we prevented a trip to DuPont!  We are singing the praises of our Pediatrician once again as well as to the fact that Miralax is available over the counter!  When you have four kids you can count on there never being a dull moment!

Friday, May 1, 2009

Everything you never needed to know but want to…

Nov 1, 2008 to Mar 25, 2009 1091

Our never ending cycle of appointments just keeps going and going and going… I have lost count of how many we have had this month, but this week alone we will have had three. I have been vey behind in my updates only because I have not had much time blog recently and because I managed to infect our new computer with a very nasty spy ware virus. I just want to say a HUGE THANKS to our friend Paul for correcting the problem and allowing me to connect again to the outside world!

On Monday, we had Lucy’s neurology appointment. This appointment confirmed what we already knew, Lucy has loose joints and suffers with moderate to severe hypotonia especially in her truncal area. We discussed Lucy’s weakness on her left side and came to the conclusion that a repeat MRI will be necessary, but when this will be done is up for debate. We would like to wait until she is at least eighteen months old, basically by this age the rate at which the brain grows will have slowed. Her neurologist feels that therapy is very beneficial for Lucy’s development, so we are looking into adding occupational therapy to our list of therapies. When we go to Atlanta in a few weeks Dr. S ordered a spinal tap on Lucy and at that time our neurologist wants him to check for neurotransmitter diseases. In her opinion, this would be her next step with Lucy. Our neurologist has sent patients to Dr. S and is familiar with his procedures. From what we understand he does the initial diagnosis but does not do follow up appointments. She is willing to follow up with us after he has made his final report on Lucy. She told us at this appointment that she is confident that Lucy is not suffering with any form of muscular dystrophy or cerebral palsy, that was a relief to hear as her metabolic doctor had suspicions. Lucy’s loose joints are a concern, we had Lucy fitted for SMO orthotics(Sure Steps) on Monday in hopes of providing her with extra support for her loose joints. Not sure how she will do with these, we’ll just have to see. Our next hurdle will be to find teeny tiny shoes to fit with her orthotics, Lucy’s shoe size is about a one.

On Wednesday, we had an appointment with her endocrinologist to discuss the need for a fasting study. This appointment proved to be very beneficial to Lucy. We all agreed that we need to document low blood sugars on Lucy at home not just in the lab. If we find that we are getting low glucose readings at home than a fasting study will be necessary. We came up with a system for documenting and reporting Lucy’s glucose readings and left there with a better understanding of why it will be necessary to do a fasting study if we find that Lucy is hypoglycemic. We were told that there is no one blood test that can be done to detect the cause of hypoglycemia. In order to attempt to find out why her body is experiencing this we need to test her blood when she is experiencing low blood glucose levels. This will help to pinpoint why and where in her body this is occurring. The only way to do this is to put her through a fasting study. Her endocrinologist does not feel that Lucy’s issues are solely endocrin in nature, he feels that there are too many organ systems involved. He believes that there is a primary reason for why Lucy is experiencing all that she is, but does not feel that the primary reason is endocrin in nature. He does not believe that Lucy’s hypoglycemia is as a result of the over production of insulin, as those babies tend to be very chubby because their bodies are storing the excess insulin as fat. This is clearly not the situation with Lucy. He told us that in cases such as Lucy’s, he has found that the cause for hypoglycemia is usually related to the way the body metabolizes fat thus making this an metabolic issue. We appreciated hearing her endocrinologist explain to us what he is thinking and why, knowledge is power!

The reason we have not set a date for Lucy’s GI workup is because our endocrinologist admitted that he was “holding up the show” so the speak. Everyone was waiting on him to set the dates for the fasting study before anything else could get scheduled. He was waiting to speak with us before he went ahead and set a date, and we are glad that he did since we are not sure yet if we even need to do the study. If we find that we do than the fasting study will be done during the first three days of her admission before any of the GI stuff will be preformed. We all agreed that at this point we need to wait until we get back from Atlanta before doing anything. In a way we are glad, we are hoping to ask Dr Schoffner’s opinion about some of these things.

Tomorrow we have another appointment with Lucy’s metabolic doctor. I am hoping that we can clarify what the next month will involve. I’m not sure that is realistic, but I am optimistic.