Merry Christmas to Nicole

Surprise, it’s Drew.  After more than a year of blogging from All The Marletts, I am writing my first post.  Hello to all of you I know, and nice to meet all of you I don’t.

Let me start by saying that it is very difficult to surprise Nicole with any gift.  So this year, I decided to give her a gift that I didn’t have to hide.  I love that Nicole blogs.  It keeps us connected with our family and friends, it connects us with new families and makes new friends, it documents our life, which would otherwise blur from day to day in our memories, and I know that Nicole enjoys doing it and feels better after writing a post (sounds strange, but it’s true).

Therefore, this year for Christmas, I decided to get Nicole a blog make-over.  She will be working with a blog designer over the next few months to give the blog a new look.  I am looking forward to seeing the result and I’m sure you will all know when the elves have finished her gift.

Merry Christmas to all, and to all a good night, I’m tired.

Drew

Let it Snow, Let it Snow, Let it Snow

It has been snowing since 1:41 am.  How, you wonder, do I know that this is the time it started snowing,  well….I was awake folding laundry and nursing a sick child.  Yes,  Lucy is sick and not sleeping well(that’s putting it mildly). Three of  our kiddos and I have some sort of a runny nose head congestion thing; but Lucy is just miserable and not her normal mostly happy sometimes cranky little self.  Instead she is mostly cranky and sometimes happy.  She started acting “off “on Wednesday morning, by Wednesday night she was down right miserable with a fever, head congestion, and runny nose.  The poor thing could not suck on her binky she was so congested, feel bad for her but feel worse for the rest of us who have live with her not being able to suck her bink.  Thursday morning she woke up(I use the phrase woke up very loosely)and had a 96 degree temperature, autonomic dysfunction is such a baffling thing one hour she is higher than normal and the next hour she is lower than normal .  She was obviously miserable with a thick runny nose and drooling because her oral motor tone was lower than normal, in general Lucy becomes even more hypotonic when she is sick.

  (Gross, I know but as a result of her having a runny nose she has discovered her nose holes:)

By Thursday night she was really struggling to swallow, she kept aspirating her saliva.  She would wake every twenty minutes or so coughing from aspiration.  We had already elevated her crib mattresses in an effort to help with her congestion, but honestly we did not know what to do for her aspiration problem.  She and I slept on and off in the rocking chair in the nursery, but it didn’t really help the problem.  She was happier though just being in my arms. 

Friday morning we had therapy and I could tell that she was acting even more “off”, although she did not have a fever she was struggling to balance and drooling even more.   My mothering instinct kicked in and I called our pediatrician who said bring her in, we can never be too cautious when it comes to Lucy.  I know I’ve mentioned this before but it deserves mentioning again, we are so  grateful for our pediatrician and her staff.  Without them I do not believe that we would have diagnosed Lucy as soon as we did.  She trusts my mothering instinct and listens to all our our concerns, trust me when I say this is not a common every day occurrence in the medical world.  Lucy is dealing with some sort of infection, my instinct was right again but I was still hoping she would tell me that it was just viral.  Lucy has thick green drainage in the back of her throat and with her aspiration issue the fear is that she could aspirate this green stuff and get another pneumonia.  She put Lucy on an antibiotic and said to call if anything changes.  Praise antibiotics! Lucy slept better, not great but better, last night than she did the nights before.  Although she is still cranky and not her usual, her nose is not dripping green stuff any more.  She is exhausted, and so am I.

As I write this it is still snowing.  We have been snowed in all day and we looked at this as an opportunity to have some holiday fun.  We baked and decorated some of the most vibrant sugar cookies I have ever seen (see photo below).

The kids had fun doing it, and we  the parents are still wiping off frosting and vacuuming up colored sugar from our kitchen floor and every where else they walked.   Drew attempted to shovel a path on our driveway just in case of an emergency, lets just hope we have no emergencies tonight as the snow is piled up nearly two feet in some areas.  Jack, Megan, and Sophie played out in the snow for a short period of time today, I think that Sophie broke the record for shortest duration.  After taking longer than twenty minutes to get dressed to go outside, she was back inside crying  in less than five minutes.  You gotta love her, or else you’ll loose your mind. 

Here’s hoping that Lucy sleeps better tonight, feels better tomorrow, that the snow tapers off so the kids can play outside a little longer tomorrow, and that Drew and that we can shovel out from all of this snow.

You’d Better Not Pout…

I have a mountain a literal mountain of laundry to fold, more laundry to do, Christmas shopping to still finish, cards to order and address, a baby who has not slept a decent night in over two months which means I haven’t slept well either,  this same baby seems to have the beginnings of a cold so now we are on “ready and alert” for anything out of the ordinary with her,  an appointment with Lucy’s CHOP nutritionist this afternoon, more appointments to schedule, a son who seems to think that it’s still summer as his hat and gloves are laying on the floor by the door, a first grader who has had a cold for a little over a week now, and three children (four if  you count Lucy’s incessant pointing at the Christmas tree) who are constant reminders that Christmas is only 10 days away or is it nine now!  

I AM looking forward to the upcoming holiday, I just wish at times that the preparation was a little bit easier.  Of course, I really wouldn’t want to have anyone else do these things  for me; except maybe my laundry,well only if they fold it the way that I do:).  I have more posts about our trip that I am working on and am hoping to get them done soon.  Just wanted to share with you some of the things that I have going on right now so that you don’t think we forgot about you.  Last night we took the kids to Longwood Gardens, it was beautiful as always, and a nice  couple took this picture for us.

Tonight I am looking forward to baking/eating some cookies with my kids.   

It was Like… Magic (Chapter 1)

It was the Monday before Thanksgiving and we were off to yet another appointment with Lucy’s GI.  It was a very productive appointment in the sense that we discussed some “what if” scenarios with her doc for the first time in Lucy’s life.  For most people, these types of discussions are not what you want to have with your doctor; but for Drew and I it was a relief to hear what his thoughts were.  He shared with us some of the concerns he has for Lucy and what we need to be looking for that could possibly indicate trouble. Lucy’s motility appears to be slowing, but she is continuing to gain. Weight gain is so important and we are going to continue to keep monitoring this.  He agreed to pull her J-tube and have it replaced with a Mic-Key G-button.  We met with the GI nurse practitioner just after her GI appointment and made the switch right there in the office.  After a frantic search for the correct size(she went from an 18fr long tube to a 14fr mic-key for all you G-tube experts out there, mainly because that was the only small size they had in the office), a quick tutorial on how to change her button at home, and assisting Drew from fainting to the ground(he doesn’t do well with anything bloody or seeing someone in pain, God bless him for trying) we were on our way.

Lucy’s new Mic-Key not to be confused with The Mickey:)

Tuesday afternoon we could be found at our Pediatrician's office waiting for round two of the H1N1 vaccine.  It is a crazy busy time of year in any pediatricians office, but ours is an independent and she had all of her rooms full with other patients not to mention our room full with our four kiddos.  After waiting for over an hour trying my best to distract the kids from what was about to happen, all four kids took their shot in stride.  I think that only three out of four left in tears, not too bad.  As usual, Lucy reacted with a fever and general irritability afterwards.  I was actually looking forward to the drive the next day because I knew that she would sleep for most of the day.

 

The next twenty-four hours were a blur of suitcases, plies of clothes, shoes, medical supplies, strollers, Lucy’s walker and wheelchair, coloring books and craft supplies, DVD’s, hidden surprises for when those desperate times call for serious bribery, snacks, remembering to return all of  the library books(we only forgot to return one), tracking Lucy’s new tube supplies with UPS which incidentally arrived after noon on Wednesday and needed to be reshipped to Disney on Monday, sharing secret glances with my husband who knew that  at any moment I was going to blow it and say something about going to Disney, and all of the other stuff one needs to do in general so that they can leave their house for a week and a half. 

When I look back on our trip I am in awe of how we were able to plan, organize, pack, and get there and back all without forgetting something or loosing our sanity.  Planning for any time away from home with our family is never easy, but add to that a 1,000 plus mile drive and a week in Disney World and you increase the difficulty by well…a lot!  The weeks of planning, organizing, packing, and secret keeping paid off, it was like…magic how we were able to do it and enjoy it all!  

We’re Back!

We are home, we had an absolutely fabulous time, and we are exhausted!  We had a great vacation and have so many memories that we want to share with you, but for tonight we just wanted to let you know we’re back.

We left that,

 

and came home to this!

A little of this and a little of that…

On Friday night our family of six celebrated Thanksgiving, aka Thanksgiving Jr. according to Jack or Thanksgiving practice according to Sophie,  with all of our usual favorites plus a few extras.  The kids realized that because we will be at my sister’s for Thanksgiving I was not going to be cooking all of the food.  This caused quite a stir in our house since it is our family tradition to stay in our pajamas on Thanksgiving and make a lot of yummy foods and a great big mess in our kitchen.  I love that the kids look forward to certain traditions, I myself am a bit of a traditionalist just ask my family.  However if you do ask them, they may choose to use other words to describe my love of tradition.  I shopped, cooked, and prepped for our pre Thanksgiving all week.  On Friday afternoon Drew came home at 3:30 and put the turkey in the oven, since I was at DuPont with Lucy.  When I came home I changed into my pajamas and we set to work on making a lot of food and a gigantic mess of our kitchen.  When all was said and done we sat down for dinner at 7:45; better late than never, but hey we were a week early.  One of the best things about Thanksgiving… all of the leftovers.

Friday was a day of feasts, Sophie had her Thanksgiving friendship feast and play at preschool.  She was dressed as a pilgrim girl and recited the line  “I am thankful that we finally reached land, we named a big rock Plymouth rock, after all we came from England.”  She tweaked the wording towards the end but she was great!  We weren’t really worried, this is our girl who knows all the words to Taylor Swifts “Juliet”.  I know, I know those lyrics are not very appropriate for a four year old, what can I say the girl has an uncanny knack for saying the inappropriate. 

Lucy’s new AFOs fit her well, but that little stinker would not take a step in them.  She stood in her walker just looking down at her feet.  She was more engrossed with the design and pulling on and off the Velcro than actually walking.  I took her to the shoe store after we left the hospital to try and find a pair of lightweight shoes that will fit with her orthotics. We found an adorable pair of Mary Jane mini shoes from Robeeze that had butterflies on them. Lucy’s actual shoe size is a size two, I had to buy her a size four to fit with her new butterfly legs.  They should fit for a while:)

I finally took a few minutes for myself this weekend and got my haircut.  The last time I had this done was in March, we’ve  been a little busy around here.  You know it’s time to get it cut when your husband starts telling you when he can watch the kids so that you can go to the salon.  I had all of the kids hair cut on Wednesday afternoon including Lucy.   They all look so cute and clean cut,  this is the first step towards getting the perfect photos for the holidays. 

Lucy has an appointment with her GI doc this morning and an appointment with the G-tube nurse practitioner.  We are going to discuss increasing her reflux meds, feeding rat, and switching her GJ-tube to a Mic-Key button.  Her current tube is leaking, not enough to worry about her loosing her feeds but it is constant drip and very stinky. I have been sporting a wet spot on my right side everyday for the last week or so.  Oh the things we have to deal with, really it’s a small price to pay for Lucy’s life.      

Where has the time gone?

We’re still here, we’ve just been a little busy living life these past few weeks.  We have been appointment free for the last 18 days!  That is the longest break from the medical world we have had in over a year!  These last few weeks have been a much needed break for all of us!  Health wise we are all “healthy” including Lucy, somebody please knock on wood or something like that.  Lucy is having difficulties with her tube leaking , tolerating her feeding rate, and cutting eye teeth; all of these add up to some pretty wicked nights of no sleep, but she is “healthy”!  I am happy to report that all but one of her eye teeth have come in, so I do believe that there is an end in sight; tonight would be great for me Lucy girl.  As for her tube leaking, we are going to have it replaced on Monday.  Our hope is to have a Mic-Key button placed which is a low profile button that has a connector tube that locks in when in use and comes off when not in use.  Right now Lucy has a very long flexible tube that hangs 8 inches from her belly, she can literally trip over it.  We will have to see what her GI doctor has to say on Monday, but I am going to do my best to persuade him to allow this for Lucy.  Feeding rate, well that’s been a year long battle, can you believe that it was a year ago that we started her on enteral feeding?  If I had to guess,I think that Lucy’s reflux medicine needs to be adjusted.  She is waking frequently after falling asleep, this pattern was what she used to do before going on a reflux med.  I’ve said it before, it is difficult to decipher what is ailing her at any one moment, but we are getting better.

On Friday Lucy will be getting a brand new pair of articulating AFOs with butterflies and pink Velcro, these are orthotic leg braces that will bend at the ankle.  Right now Lucy has SMO orthotics which support her ankles.  She was casted for her AFOs at the end of October after her neurologist observed her gait and agreed with Lucy’s PT that AFOs are the way to go with her.  Lucy hyper extends her knees and clenches her toes all in an effort to help her balance, all of this extra exertion of energy is not good for Lucy’s muscles.  One of our main concerns with getting her articulating AFO’s is the extra weight on her legs, any extra weight just acts like anchors.  Just the other day she tried on a winter coat which had a little bulk to it, she just stood there swaying back and forth for a few seconds until she fell down on her bottom.  She looked cute in the coat, but cute literally only goes so far. 

We started Lucy on Levocarnator, it is another supplement in the mito cocktail that is said to help assist mitochondrial function. One of the side effects of this medicine is “fishy”smelling diapers.  Oh just when you thought dirty diapers couldn’t get any worse, they do!  Lucy’s newest sign is the the sign for P.U. , even she understood the need for this sign.

We are getting ready for our “big trip” next week.  I still have a lot of planning and organizing to do, but it is not taking away from our excitement.  Drew and I have been sharing secret glances at one another whenever the kids talk about going to Florida.  They have each asked if we can go to Disney World while we are down there.  Our response has been, “wouldn’t that be fun?”  They are thrilled to be able to spend Thanksgiving with our extended family, so we can’t wait to see the look on their faces when we tell them that we are going to be spending a week at “The Happiest Place on Earth”. 

Before we leave, all of our kiddos will be getting their H1N1 booster shot on Tuesday.  Knowing that they have protection from this illness gives us peace of mind.  Keeping everyone healthy is in all of our best interests but especially Lucy’s. I have to applaud our kids with their hand washing efforts, they have been giving it their best! 

This is getting to be rather long and I am wiped.  I’ll leave you with a picture of this little sunshine.

Smile :)

Do you Notice anything different about Megan, besides the fact that she is not wearing her glasses?

Now do you notice anything different ?

This little lovey lost her first top tooth on Sunday morning and another bottom tooth on Monday evening.  The tooth fairy lost $2.00, that is the going rate for two lost  teeth in the Marlett house.

Teeth is the reoccurring theme in our lives right now. Megan is loosing teeth, Lucy is cutting teeth (we hope), all of us recently had our teeth cleaned and I am happy to report no cavities,  and Sophie is trying her darndest to stay awake to meet the tooth fairy. 

An Inspiration

Last year we were blessed to meet a family in the hospital whose son had mitochondrial disease.  It was obvious from the moment we met this family that they had a familiarity with the hospital environment that was comfortable to them, but to most is unfamiliar.  We were in the beginning of our search for answers and they were in the midst of fighting an uphill battle with this baffling disease.  Although they were living a life most of us could not ever imagine, they were living their lives as a family inside the walls of the hospital.  Karen reached out to me and shared with me a little about their situation.  She and I discussed our circumstances while Lucy fussed in my arms, she was the first person to tell me about mitochondrial disease.  Though our situations are very different , many of Lucy’s symptoms were strangely familiar to Karen.  I never imagined that one year later we would learn that our Lucy is battling the same disease.   Gavin’s situation and his fighting spirit have giving us perspective.  The way the Owens family choose to live their lives as a family with two beautiful children, seeing beyond the illness, is an inspiration.  Today the earth is loosing a little hero…go in peace little Gavin.

www.gavinowens.com

Trick or Treat

What do you get when you have one Wizard, two Cinderella's, a Sleeping Beauty, six pumpkins, and one Brett Favre…Halloween at our house! 

Add to that one little doggie, princess Mulan, a rock star, and one adorable ladybug and you get…. a whole lot of trick or treaters!

The night before we had pizza and played games.

Lucy and Abby were wise and stayed out of the way, but not without taking some of the fun with them.

This year Halloween was humid with rain off and on.  The festivities came to a quick end when the skies opened up which caused the rock star to skip a beat, dissolved the magic from Harry’s wand, and soaked most of the royal kingdom, part of the insect world, and mans best friend.  As for Brett,he should have retired minutes earlier to avoid all the rain.

 

Happy Halloween!

Today is My Day!

All those times I have wished for more time in a day, well…today is that day.  It is officially 12:00AM and I just remembered that day light savings begins NOW!  Don’t forget to set your clocks back.   I’ll write more later, right now I am going to bed.  Good night :)

A Wizard, a Scarecrow, and a Firefighter

Oh my!  This morning things were a little different than our usual routine, each kiddo had an event at their school in which they could come dressed in some sort of costume.  Jack’s school allows them to come dressed in their Halloween costume as long as they do not wear a mask, paint their face, bring a weapon, or have glitter.  That sounded fairly reasonable to me.  Jack dressed up as Harry Potter complete with robe, wand, and lighting bolt scare on his forehead, which by the way is technically not face paint it’s washable marker. 

Megan’s school does not allow the children to come in costume, instead they could come dressed in some sort of “farm attire”.  This prompted some creative thinking on my part and some rummaging through Jack’s old clothes bin to find a “farmerish” looking  shirt, a far cry from the Cinderella costume she wanted to wear.  Megan didn’t want to look too “boyish” so some braids where in order and a little face paint to make her look more like a scarecrow.   That qualifies as farm attire, doesn’t it?

 

Sophie’s school put an even different spin on the NO Halloween costume rule and instead said they could come dressed as their favorite community helper.  She and I had to have a little heart to heart this morning when she got upset over not being able to wear her Sleeping Beauty costume or her witch costume.  How do you explain to a preschooler that princesses and witches are not really community helpers?  We came up with a compromise and dressed her up as a firefighter, complete with overalls (all we had were denim ones) and a firefighter jacket.  We could not find our firefighter hat, which if you saw our playroom you would know why. 

I was impressed with how they all looked, and that I was able to pull it all off by the time they all walked out the door this morning.   Even better they were all very excited to go school and participate in the days activities!  As a mom of many children, I’d just like to say that it would have been a lot easier if they could have all  gone  to school dressed in their Halloween costumes.  At least I would feel a little better about spending all that money on costumes that the kids only wear for one night.  Halloween is so much fun for the kids, but can I just say a little stressful for the parents.  The best part of Halloween as a parent is stealing some.…ok,a lot of candy from the kids trick or treat buckets. 

What did we do today?

A lot of laundry, went to music class, ran an errand, did homework with the kids, allowed Lucy to sleep all afternoon, cleaned the refrigerator,  made dinner, and went to NO medical appointments!  Yes, we had a pretty normal day which we were all grateful for! 

Yesterday morning I took all of the kids to our pediatrician’s office to get their H1N1 vaccine, and apparently so did everyone else.  The office was crowded, but I was reassured that those who were in the waiting room when we were there were not contagious.  It feels like everyone I have spoken to in the last week has either been sick or knows someone who has been sick.  We are hoping and praying that we can stay healthy; because as you know, but the kids don’t, we are planning a BIG surprise for the family in FOUR weeks!

Lucy’s hair has been a topic of several e-mails.  It looks better, but is still full of glue.  We have been using lots of hair conditioner and baby oil, but the glue is stuck to her scalp.  She doesn’t seem bothered by it, it only bothers her when we try to remove it.  As hard as it is for me to not pick at the glue or comb her hair, I am going to leave it alone.  Hats are good, she looks cute in a hat :)  

A Very Bad Hair Day

BEFORE

AFTER

My hair hurts just looking at her…

Does anyone have any suggestions for getting super glue out of hair?

On your marks, get set, go…

What a crazy busy day, week, month we have had!  Yesterday was one of those days where I there was no room for error in the schedule.  I had just enough time to get from here to there without stopping or being delayed by even the smelliest dirty diaper.

The 24 hours of having Lucy’s head wired and wrapped in gauze all the while carrying around an few extra pound bag over my shoulder went by quickly, and was not as bad as I thought it was going to be.  Of course having a jam packed schedule helped to pass the time.  Lucy never really attempted to take the leads or the gauze off.  The difficult part was placing the leads and then having them removed when the test was done.  I scheduled a double therapy session for Lucy yesterday morning because we know that when she gets over stimulated these are times when she has her starring episodes.  Lucy did have a few starring episodes during the time she was hooked up, we’ll just have to wait for the results to see what if anything was detected.  We were told that the types of seizures that Lucy is experiencing are difficult to detect on an EEG.  We are scheduled to see her neurologist next Thursday, we are hoping the results will be back by then.

Our pediatricians office called me yesterday morning to let me know that they just received their shipment of H1N1 vaccines and to bring Lucy in ASAP.  There was a simultaneous “HOOAY” that could be heard from our house and in their office, I don’t think that I have ever been so excited to have my kids vaccinated.  Lucy received her vaccine yesterday and the other three are scheduled for 9:30 Monday morning!   H1N1 is spreading quickly throughout our community.  Megan’s school nurse called me Tuesday to give me a update, she was calling out of concern for our Lucy.  We feel so blessed to have so many that care about us,  it is simply amazing!

In addition to the double therapy session, going to or pediatricians office, and having Lucy’s EEG, we also had an appointment with Lucy’s CHOP nutritionist yesterday, we love her and she loves our Lucy!   This appointment was scheduled on Monday because her GI wanted to have Lucy brought in for a weight check and to discuss the issues we have been experiencing with her j-tube.  The good news is that Lucy has not lost weight but the bad news is she still isn’t growing as fast as they would like her to be growing.  You can’t have your cake and eat it too, and yes pun intended!   We are faced with several options, fortifying the calorie content in the breast milk to bring it up to 30calories/ounce, using all formula that is 3o cal/oz, and increasing her feeding rate through her g-tube.  We will do what we can, the rest is up to Lucy’s body.  

We have been too busy with medical stuff that I haven’t blogged much about anything else in our life.  I am afraid to write this, in November we are going to try and take a break from many of the appointments and enjoy our life, when I wrote about trying to do this in July and August well…you know what happened.  We are planning a BIG trip over Thanksgiving!  The kids think that we are going to Florida to visit family, what they don’t know and we aren’t going to tell them until we arrive is that we are also going to Disney World for a week of relaxation, fun, and memories!  Shhh…it’s a secret!

Heart to Head

Lucy had a long and exhausting day, which means that we all had a long and exhausting day!   After carefully orchestrating who was going to be where and when today, Drew and Lucy and I met at DuPont for appointments with cardiology and neurology. Lucy’s neuro referred us to this specific cardiologist because she has experience with patients with mitochondrial disease.  It was a relief to Drew and I to learn that  she was knowledgeable about mitochondrial disease and how that translates to the heart.  Lucy has not shown sings of any obvious cardiac issues; however,  she does have a tendency to drop her pulse ox at night when her body temperature lowers, and she also tends to have higher than average blood pressure.  The cardiologist explained to us that these issues are most likely related to her autonomic nervous system dysfunction and told us signs to look for that would indicate possible cardiac concern.  After discussing Lucy’s medical history, blood pressure, pulse ox, performing an EKG, and finally an echocardiogram we are thrilled to report that Lucy’s heart is HEALTHY!  We were told to come back in a year for another check up:)

After our appointment with cardiology we went upstairs to have the leads placed on Lucy’s head for her 24 hour ambulatory EEG.  We should have had this done next week so that we could have dressed her up as a mummy for Halloween.  It took four of us to get all 28 leads super glued onto Lucy’s head, and than wrap her head in gauze.   This was not an easy thing to have done for Lucy nor Drew nor I.  In spite of all of the tests and procedures that Lucy has had done in her short life, it does not get easier to watch your child go through procedure after procedure.  Somehow you do manage to find ways of coping so that you can continue to do what you feel is in the best interest for your child.  It is not easy, tonight I am exhausted from trying to find ways of coping!  We are hopeful that this test will give us some information as to what is going on inside of Lucy’s head.  Hope for a good nights sleep so that tomorrow we wake up ready for another busy day. 

She is so stinking cute even with her head wrapped in gauze!

Hot Wheels!

Yesterday we had an appointment at DuPont to pick up Lucy’s new adaptive stroller/pediatric wheelchair/adaptive seating system/Hot Wheels!   For those of you who know me well or have seen our garage, know that I am a bit of a stroller aficionado.  Like a fine craftsman, I have to have the right tool for the right job.  Notice how I phrased this in terms that my husband can understand, it helps him to relate to  my stroller obsession.  I have strollers that seat one, strollers that seat two, strollers that stand one and sit another, a vintage pram, a stroller that can go from laying to sitting(I love this one), a stroller that can handle our infant car seat, a double jogging stroller,  my favorite umbrella type stroller that unfortunately doesn’t lay totally flat, and a not so great umbrella stroller that we use for traveling on airplanes.  Even with all of these, Lucy was in need of a more supportive seating system that will allow her to view the world with better posture and with more support.  She fits in her new seat like Goldilocks!  I have yet to get a picture of her in it, but here’s a glimpse of what it looks like with her out of it.  For those of you who are reading this and are wondering, it is a Kimba from Otto Bock.

 

The frame on the left is a high-low base for our house.  The seating system can attach to the stroller frame or the high low base.  In case your wondering, it is heavy and slightly tricky to use, but we will be pros in no time.  

Tomorrow we have an appointment with cardiology and neurology at DuPont.  Please keep us in your thoughts and prayers as it will be a very long day.

When I grow up…

Mommy, when I grow up I want to work in a restaurant.

Ok Soph, what do you want your job to be in the restaurant… the cook, a waiter, the table setter, dishwasher…

No Mommy, I want to be the balloon maker!

We eat at too many kids eat free restaurants.

Weekends

I love weekends, I wish they were longer!  I love being home all together as a family.  I love that we eat big breakfasts late in the morning, hoping to fill the kids up so that we can go on an adventure with all of them before they need to eat again.  Almost always someone is hungry again before we even arrive at our destination.   This weekend our weather was cold and rainy, but we enjoyed it nonetheless.  We spent the better part of today in our pajamas catching up on a few things around our house, this was just what we needed.  This kids had a blast playing  together.  They made “stuff” out of cardboard boxes and paper.  Jack made a ship similar to what the immigrants traveled to America in complete with steerage, the part of the ship where the “thrifty” people traveled.  They have been doing a big heritage project in social studies at his school, can you tell it has made an impression?  Sophie and Megan made houses for their vast array of stuffed animals that are all named after some of their closest friends, I don’t think that there is much resemblance to the actual people though.  It is so fun to watch the interactions amongst them.  When the kids are laughing about something Lucy now tries to laugh with them, even though she has no idea what they are laughing about.  How cute is that!

Last week was busy and full of ups and downs. On Tuesday we took Lucy back to CHOP for an appointment with her metabolic doctor and geneticist.  I don’t know why we thought that this appointment was going to be any different than any other appointment we have had with them in the past.  Maybe we were hoping that they would be more helpful to us now that we have Lucy’s biopsy report back from Dr. Shoffner, sadly they were not.   Without going into too much detail, Lucy’s metabolic doctor questions or disagrees with some of the recommendations that Dr. Shoffner has made for Lucy.  This put Drew and I in a very uncomfortable situation.  Our focus for Lucy has and will always be to get her the best possible care and treatment that we can find. We feel that continuing care with CHOP Metabolism is not in Lucy’s best interest at the moment.  However, we do feel that all of Lucy’s health care needs are currently being met, and that her health is being managed by some of the best doctors and specialists in our area who are very interested in helping our Lucy!  They did order another series of  metabolic labs to be drawn on Lucy.  While I was sitting in the lab yet again holding our tiny girl, the tears started flowing.  Lucy can now shake her head “no” when she doesn’t want something, when she looked up at me and shook her head “no” with big tears coming out of her eyes I could not hold back what felt like a years worth of emotion.  We will continue to hope and pray that we find the right doctors, treatments, etcetera  for our little girl. 

After all of that emotion we still had to take Lucy back to interventional radiology to have her tube looked at.  This was the last thing we wanted to have done, but it had to be fixed.  They scanned her belly and found the tube to still be in place, but because she was experiencing dumping syndrome they pulled the tube and placed a shorter one instead.  The hope is that by making the tube shorter and  placing it closer to the opening of the  jeoujenoum  it will allow the body more time to absorb the food.  In theory this makes perfect sense, however for Lucy it’s not working.  Whenever we have fed her through her j-tube she has diarrhea.  We have switched back to g-tube feeds and will discuss this with her GI doctor and nutritionist in more detail this week.  Today we noticed bleeding around her site, it looks like we are dealing with granulation tissue  again and possibly another infection.  I drew a circle around the redness and will keep and eye on it to see if it spreads.  Overall she is not acting too “off”, but she has been sleeping a lot recently. 

Despite all of the medical stuff, our girl has been making progress in her vocalizations.  She can sometimes say dada and baba when you ask her to,  this is huge!  She very rarely vocalizes anything but these sounds are deliberate and have meaning to her.  In her music class we chant rhythms saying “ba, ba”  Lucy repeated these sounds in class several times.  Her OT came with us to class last week, perhaps she was trying to show off a little to Kris.  We were all impressed! 

This week will again be loaded with medical appointments. We will be at DuPont three days this week.  We are scheduled for seating clinic on Tuesday morning to pick up her new pediatric wheelchair.  Thursday we see cardiology for a full workup which they told us would be a three hour appointment.  After that we head upstairs to neurology to have her hooked up for her 24 hour ambulatory EEG.  Friday we return to have the the leads taken off and to turn in the transponder. 

I said in an earlier post that we are going to have to schedule in some serious fun when all is said and done this month, and serious fun is what I am planning for our family.  I will let you know more about what we are planning in upcoming posts.  As for now, please pray that we all continue to stay healthy and that we continue to be reminded of what is truly important in our lives so that we stay focused in the midst of all of that we have going on.  Thank you so much for all of your thoughts, prayers, and support we can not even begin to tell you how much they mean to us!

Happy Monday!

Yes, I’m trying to make an effort at celebrating the everyday, so happy Monday!  This week we have several doctors appointments (that will take up most of a day), a trip back to CHOP to have Lucy’s tube fixed and/or replaced,  soccer practice and a game, therapy times three, music classes times four, Jack’s heritage day at school on Friday morning, a session with an infant massage therapist(Lucy loves massage), a meeting for parents of special needs children, several play dates, a birthday party, shopping to find pants and shoes that fit Megan and Jack (WOW have they every grown!), a trip to Costco where I will attempt to stock up on food and supplies for the next three weeks,  and all of the other things that need to get done in a week despite what we have on our calendar.  Life is busy, but good!

In the midst of all that we have going on we are really trying to celebrate each and everyday in our house.  Sounds corny, just try it!   It can be something as simple as giving an extra long hug in the morning, writing a “love” note to one another, calling my husband for no apparent reason or to say that I need to have the battery in the car replaced soon-hint hint, stopping to “really look” at one of the thousands of things that Sophie points out to us in a day, or doing really anything that makes this day just a little  more special.   Today I had a car picnic with Sophie as I was running errands to try and find pants for the big kids.  She thought it was "AWESOME”, and I loved that I did not have to unbuckle Lucy and eat in the restaurant.  I also put a sweet surprise in the big kids afternoon snack containers that really made their day.  Being conscious of making each day special really does make a difference!  This may sound silly to talk about, but life should be celebrated and enjoyed everyday, don’t you think!  Sure I am dreading the barrage of appointments this month, but tomorrow I am going to do something to make a very long day just a little special for everyone in our family!  Life is_____, you fill in the blank!

A Picture Says a 1000 Words

So what do a lot of pictures say?  Enjoy…