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!

 

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 ;).

 

 

We’re Home

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.

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!

Atlanta Day 3

 

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. 

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.

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.

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

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.

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.

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!

 

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). 

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! 

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.

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!