Hear Ye, Hear Ye

Yesterday I took Lucy to DuPont for a follow up hearing test.  Last April I brought her there for her first hearing evaluation, at that time she was very delayed in her speech and not really making any sounds or attempts at communicating.  Knowing then that we were going down the mito diagnosis road, and that one of the symptoms of mitochondrial disease is hearing loss, we thought it best to find out what if anything was going on with her hearing.  Her first evaluation was almost normal with the exception of her right ear.  She did not respond to the highest level frequency in her right ear, but overall it was concluded that she could hear well enough for normal communication and it should not be a reason for her speech delay.  We were told to return in six months for a follow up. 

Well nine months later, I am thrilled to report that our girly has NORMAL hearing!  Yes, the audiologist actually used the word NORMAL when referring to Lucy.  I was so happy to hear this that it brought tears to my eyes.  Not that I was really expecting it to be abnormal, she has come a long way since April, but with mito you never know and that is what makes every test so nerve racking.  Just when you are not expecting anything  you get hit with something so far out of left field you don’t know what to do with it.   The test went better than I ever thought it would, Lucy actually liked it and laughed at all the funny sounds and mechanical animals that they use in the sound booth to test these little ones. She amazes me!   

A Little of This and a Little of That

Yikes, I realized I haven’t been the most diligent blogger recently.  There’s nothing like not posting to have people lose interest in your blog, or maybe it keeps people wondering…yeah I like that thought better.  I know I owe you some posts about our trip to Disney and I will set out soon to finish up what I started writing on that waaaaaaaaay back in December.  Can you believe that it is the nearing the end of January?  Honestly, where does the time go?

In an effort to tell you a little about all of the things that we have or had going on in our lives I am going to list a little of this and a little of that.

Two  weekends ago my in-laws came and celebrated the holidays, Jack’s birthday, and a three day weekend with us.   Having visitors in our home highlights to Drew and I how much our life has changed in the last 22 months. 

Lucy’s handicap parking permit arrived in the mail last weekend.  When we first got her wheelchair I was adamant that we would not need a handicap permit.  Don’t you just love it when life teaches you otherwise!  I had a very big wake-up call in December when I was transferring Lucy from her car seat to her wheelchair.  It was cold and windy and we were in a hurry to get to an appointment,  I could not push her wheelchair between our van and the car parked next to me, there was not enough space between parking spots.  I had to leave her wheelchair at the back of our van.  I went to pick her up and in one quick move turned around to quickly set her in her wheelchair when I realized that her g-tube got caught on her car seat and had pulled the whole thing out!  She was screaming, I felt awful, and I realized right then and there that this is why we need a handicap parking permit!

Megan lost her other top front tooth on Tuesday, it’s official Lucy has more teeth than Megan.   Speaking of Megan, she had a mini meltdown this morning over her jeans being too tight.  I know that kids grow at all different rates, just look at the differences in our kids, but I just bought her these jeans in November.  SO in an effort to keep her wearing these jeans I showed her the infamous squat and stretch routine, I know all you ladies and some of you men out there know what I am talking about.  Thankfully showing her these moves changed her mood and made her laugh.  Do you think it will last through puberty, her mood not her jeans?

Sophie has been busy playing and doing her usual packing for some kind of imaginary vacation.  I think that this week she has been packing to goto Dinoland.  She does this kind of pretend packing so much that we are programmed to automatically look in every tote bag, suit case, backpack, plastic bag, doll stroller, cardboard box… for any missing items in our house because she never remembers what she has packed and where she packed it.  This can lead to some crazy fun times in our house I tell ya!  We are ready to send out a search party for our cable/television remote control,  it has been missing  for almost a month.  

Jack has to memorize his multiplication facts all the way up to twelve.  I feel like he and I are speaking in some sort of secret code as I am constantly asking him what something times something equals.  He has also been reading some pretty great novels that he is passing on to me to read, we love a good read!

Drew and I went out on a date Saturday night.  Yes, you read correctly Drew and I and NOT Lucy too went out for dinner and a movie.  When I say dinner, I mean that in the loosest sense of the word, we went to California Tortilla for dinner where he treated me to the 2010 Burrito Fiesta meal for only $5.  We laughed all the while we were eating because we blew off a reservation that Drew had made for us at a MUCH nicer restaurant so that we could go to a movie instead.  We had all of twenty minutes to eat before our movie started so quick dining was imperative,  not really any different from any other night of the week except we were alone, just the two of us and no Cheerios.  We saw the new Harrison Ford movie Extraordinary Measures.  It was based on a true story of a father who was in search of a treatment for Pompe Disease, a glycogen storage disease that Lucy was tested for early on.  This movie hit home in many ways, we could relate to the passion of devoting your life to your child’s illness and wanting to do something!  Our dear friends Alicia and Paul watched all of our kiddos for us, and all, yes all, did great.  Lucy and Alicia bonded, she has the pictures to prove it.   This is something that I know Alicia has been waiting for all of Lucy’s life!  Slow and steady wins the race when it comes to Lucy.  She is starting to warm up to those she has know most of her life.  Don’t be offended if you just met her and she looks away from you like you are not even in the room, give her 22 months and you too could have her sit on your lap without crying.

I have not been snapping as many pictures recently, I don’t know why?  I think that when I go to snap a picture and have to close one eye the other one automatically wants to shut too, this makes taking a good picture very difficult.  Hopefully, I will get back into my routine of taking at least one a day soon.  I have been working with the blog designer on redesigning or blog.  I am excited to share this with you all when we are done. 

The appointments are starting to pile up again, I will post more about those in an upcoming post.  

Well, that’s a little of what has been going on in the Marlett house.  Stay tuned for many more exciting adventures. 

Oh, by the way, the carpet in Lucy’s room still stinks of Elecare even after blotting it up using an entire roll of Costco paper towels, spraying it with Lysol all purpose cleaner, using a Bissell steam clean carpet cleaner that we borrowed from our friends, and blotting some more with a damp rag.  Ugh, I think I may need to call in the professionals.

Who says you can’t cry over spilt milk?

Picture this…one very tired baby who was long overdue for her afternoon nap, one exhausted mommy who had just returned home at 1:00pm from a morning of running around the tri state area, and one very hungry four year old who wanted mommy to make the Japanese noodles for her lunch that we bought while at the Asian market on one of our many errands this morning.

My day started off during the wee hours of the morning, again.  Lucy had another night of waking every one to two hours.  I am not sure what is waking her, her pulse ox monitor alarmed off and on throughout the night, but she slept through all of those alarms, and woke at random times throughout the night.  Her big toe has a blister on the top of it where her pulse ox probe wraps around it, I took that off of her somewhere between 3am and 4am, hoping that was the reason for her waking. Nope, that didn’t seem to help.  She woke for the day at 7:30am, this was very unusual for her, she usually sleeps until 10:00 most mornings.  This morning I choose to look at this as a positive since my goal was to leave our house at 9:00am for a marathon morning of errands and events.   First stop on the agenda was to pick up my wallet that was accidentally left at the pediatricians office the afternoon before. I gave Lucy my wallet to play with in an effort to keep her happy while trying to pay attention to a certain nine year olds well check.  Yes Mom, I know, I know… I should not have done this!  I discovered the error of my ways shortly after we left our peds office.  We were at the library checking out about thirty books for the month and I could not find my wallet which held the all important library card .  I am embarrassed to admit this, but I have lost my wallet,  I mean gone never to be found again,  already twice in my lifetime.  I will not tell you how many times I have misplaced it in just the last month.  I’ll just say that I am very grateful for honest citizens.  Drew is threatening to get me one of those chains for my wallet, you know the kind that biker dudes wear, only he wants  to chain my wallet to my diaper bag.

After retrieving my wallet I had two more stops to make before Lucy’s music class started at 10:15.  This meant loading and unloading the girls twice, folding and unfolding the stroller/wheelchair twice, and convincing Sophie to put on her jacket twice(this can sometimes take longer than the previous two efforts).  We then went to Lucy’s music class where I realized that I forgot her walker at home.  It didn’t seem to matter, as she was in no way interested in bearing any weight on her legs this morning.  She did spend the entire music class sitting in Jill’s (her music teacher) lap participating in most of the activities on the class.  Way to go Jill and Lucy too!

After music class I received a call from a friend who had a question about a Japanese ingredient.  Her call motivated me to take a trip to the Asian grocery store, something I have been meaning to do for quite some time.  The Asian market that we shop at has very narrow isles that make it oh so fun to push a stroller and pull a grocery cart through.  We left the market, dropped off some ingredients at my friends house, and headed home for nap time and lunch. 

Lucy made it loud and clear that she was tired and did not want her diaper changed, feeding pump set up, or socks put back on, but that is what needed to be done before she could go to sleep.  I left Sophie downstairs to wash her hands and make a card for her friend Josh.  I finally sat down to nurse Lucy to sleep when Sophie started yelling up the stairs “Mommy…Mommy, how do you spell Josh, you are invited to my birthday party?”, I kid you not.  In an effort not to disturb the falling asleep process, I ignored Sophie’s question.   She knows better than to talk to Mommy while I am putting Lucy to bed, and I know better to not answer any question as she will not stop asking until she gets an answer.  Sure enough she came waltzing up the stairs asking over, and over, and over  how to spell Josh you are invited to my birthday party (FYI her birthday is in August).  I started spelling just to keep her from talking, when she asked, “how do you write the letter H?”  At this point she came into Lucy’s room and began performing some sort of step aerobics routine with my nursing stool.  She continued talking in spite of my incessant shhhsing all the while coming closer and closer to Lucy’s IV pole which hung Lucy’s pump and feeling bag.  I noticed that I forgot to close the cap on the top of the feed bag at the same time that Sophie tripped over Lucy’s tubing.  In what felt like slow motion, 400mls of Elecare and breastmilk came splashing to the ground.  Lucy’s food is the consistency of heavy cream and smells God awful!     Who says you can’t cry over spilt milk!

PS  The photos in this post are just a few that I like, and don’t think I have shared with you :)

Good Night Lucy Goosey

I thought I’d share something cute and funny with you tonight, since I left you yesterday with such a informative post. 

Me:  “Kids come and say good night to Lucy, she’s  going down.” (We often use this terminology to describe putting Lucy to bed, it reminds us of something a sports team would say to their opponents just before the big game.  Putting Lucy to sleep is like “the big game”, sleep is on the line and you never know what the outcome will be until the morning.  Do you wake feeling rested or more tired then when you went to bed?)

Megan: “Good night Lucy Goosey, see you in the morning, but not before I see you in my dreams.”  She then leans over and kisses her sister on the forehead.

Lucy makes a smooching sound with her binky still in her mouth.

Sophie: “Good night Goose, see ya in the morn, not before I see ya in my dreams-haaaaaaaaa!” She leans over and kisses her sister on the cheek.

Sophie: “Mommy!”

Me: “Yes, Sophie…”

Sophie: “Mommy, I kissed Lucy on the cheek (as opposed to her preferred method of smooching her smack dab in the middle of her kisser) because …you know… I have the hiccups and I didn’t want to give Lucy my hiccups! :)

We are very cautious not to spread germs or hiccups in our house. :)

Good Days but Not Really Good Nights

I read recently, on another mom’s blog, that when you have a medically complex child  it’s difficult to simply answer the question, “How’s it going?”.  I can totally relate to that.  There is really no easy answer to that question.  It all depends on the day, or rather the moment.  I don’t intend  to mislead anyone when I answer with a simple one word answer, but I don’t always feel up to talking about how it’s really going.  Let’s be honest, not everyone wants to know how it’s going even when they ask.   That’s why I blog about our life and what we are experiencing .  It allows me to really tell you how it’s going.  I choose to document our crazy busy life so that we can share our experiences and emotions with you, as well as have a journal of our family life for us.  You choose to read it.   We have been experiencing a string of good days recently in regards to Lucy’s health, the other kids health, and our life in general. When I say we are having good days, we really are, but they are not without our issues and Lucy’s too.

The kids are all back to their normal routines; school, preschool, therapies, ballet, and music. We have yet to have any medical appointments this year, a round of applause would be greatly appreciated, thank you very much!  This means that we have had somewhat of a “normal” family life in our house… well, as normal as our family can be :). For the first time in a very long time we feel like we have a routine that is working for all of our kiddos.  This is huge!  I know as well as anyone that this can change in an instant, but for now let me marvel in the fact that we have a routine. 

Lucy too has been having some pretty good days.  Since starting her on the Levocarnator in mid November we have noticed a change in her overall mood, she appears to be less irritable.  To give you an idea of what I mean by irritable; Lucy used to fuss, whine, whimper, cry, scream, and lay across my lap and nurse for comfort just to settle herself about 70% of the day. Now I would say that she spends less than half of the day doing this.  We are not the only ones who have noticed this about Lucy, just about everyone who is close with her has commented on the little missy’s surprising new personality.  Well everyone except for Sophie, she rarely has the pleasure of experiencing a less irritable Lucy.  We feel that the medicine has either helped her body to feel better thus putting her in a better mood, and/or it is helping her brain to focus and feel less frazzled.  We have not noticed any changes in her muscle strength since starting the carnator or improvements with her GI motility.   We were hoping that the carnator might help to improve her hypotonia, but hey I’ll take a happier baby any day! 

Night time in our house is a totally different story.  In looking back on many of my previous posts it should come as no surprise to anyone to know that Lucy does not sleep well at night (please take note of how politely I phrased that).  Because Lucy does not sleep well, means that I do not sleep well.  Drew sleeps well most nights, in case you were wondering.   He only wakes to put Sophie back to bed on the nights where she wakes up, he can’t really do much to help with Lucy.  Not sleeping has become so routine that it is my night “normal” to wake every two, three, sometimes four hours if we are having a good night.  As a veteran mom I know that all babies don’t sleep through the night when the books tell you they should.  Heck Jack and Megan were terrible sleepers as babies, but you wouldn’t know it by looking at the way they sleep today.  Sophie was our best sleeper as a baby, but she is not as reliable as she used to be when it comes to sleeping.  She often has nights where she wakes once or twice or sometimes three times for various reasons that would make you laugh if I told you.  However, Lucy is different than most babies and her sleep issues go above and beyond what we would expect for a baby her age.  Waking has become so routine that I think that I have fooled myself into thinking that waking only twice in the night is considered a “good” night. 

Recently, we have noticed that Lucy is having trouble handling her secretions.  She is aspirating her saliva more than she did six months ago.  She really struggled with this during her last bought of illness.  We are getting a suction machine to try and help her with this.   Like all things with Lucy some days are better than others, but as a whole her dysphasia seems to be worsening.  There is concern that this could be causing her sleep disturbances.  I spoke with Lucy’s pediatrician and neurologist about this and they agreed that this could very well be a reason for her waking.  Her airway being floppy could restrict her airflow, thus causing her to wake.  This is one theory, there are a few others that have been mentioned; but in order to even to begin to get any answers to her sleep problems, or should I say lack of sleep problems, we will need to have Lucy undergo a sleep study.  Oh, I dread the very thought of having to do this with her!  Lucy’s neuro is going to consult with a neuro muscular pulmonologist to see if we can discuss some options for Lucy before we move on a sleep study.  In the mean time we are going to begin monitoring her pulse ox and heart rate at night to see where her oxygen saturation levels are at and if low levels correlate with her waking.  I would much rather do this right now then under go a sleep study.

We take the good with the not so good everyday and make the best out of what we have.  We were recently approved for forty hours of skilled nursing care for Lucy.  In all honesty, I don’t know how I feel about this.  Drew and I  have taken care of everything for all of our kiddos, it is what we want to do!  Sure I wish at times that we had an extra pair of hands to help us with things, but I’m just not sure we are ready to accept nursing care.  Night care is an option, but unless they can nurse Lucy back to sleep I don’t think that I will be getting any more sleep with a night nurse in our house, not yet anyway.  I am not looking for anyone’s opinion on this just yet, I just wanted to put it down in writing so that I can get it out of my mind.   Just to clarify; Lucy nurses not for nutrition, but for comfort.  She stops nursing or flip flops back and forth when or if she gets any breastmilk.  After a year of pumping I stopped about a month ago when after a half an hour of pumping I was getting less than half an ounce total from both breasts.  I was happy and sad to have it end.  Happy because pumping was such a time commitment and now I have some extra time especially in the morning when time is of the essence, and sad because I knew my body could no longer supply my baby with the food we still want to give her.  We have been blessed throughout the past year to have received donor milk from very generous and passionate mothers who know the benefits of breastmilk especially for a baby like Lucy.   

If you have followed me to the end of this post, congratulations!  I had more on my mind then I thought when I set out to write this.  Thanks for all the love and support and thoughts and prayers.  They mean the world to us:)

A Bit of Trivia

You know how there are those people whose job it is to calculate all sorts of ridiculous trivia  facts in the world, like how many hours of your life you spend sleeping.  Do you think that those same people take into consideration the number of kids a person has or whether or not  any of those kids have a sleeping problem?   Just asking, I think that it is entirely possible that I may fall short of the average number of hours one sleeps during their lifetime. FYI it is believed that one spends a third of their lifetime sleeping.

On the same theme, do you think that there is a trivia fact out there in which one has calculated how long one’s house can stay clean after cleaning it?  If not, I think that I can make a prediction; but again I think that this calculation needs to take into consideration the number of kids a person has and if any of those kids have a problem cleaning up! FYI every other Saturday is cleaning day in our house and this Saturday just happen to be our cleaning day.  Just moments after declaring our house clean our kitchen turned into this.  Enjoy :)

 

If you can’t eat your food then who says you shouldn’t play with it!

Happy Holidays!

Where have we been…hibernating!  This is unofficially the term we like to use for the week that follows Christmas and takes us into the new year.  We have been catching up on sleep (if that’s even possible) and eating all sorts of yummy foods that can be found this time of year.

(Check out the shoes, these are Sophie’s but Lucy loves to wear everyone else's shoes.  Notice how she wears one facing forward and one facing backward.  She does this 100% of the time, so silly that one! )

It’s been a while since I last wrote,  sorry to leave you all hanging.  When I last posted Lucy was sick with some sort nasty green gooey infection that was overtaking her head, she is doing so much better now.  In fact she was doing so much better several days before Christmas, thank God for antibiotics, which gave us that much more to celebrate this season.  My parents, grandparents, and aunt and uncle drove over the river (some over the Susquehanna river twice;) and through the woods to our house for Christmas.   We had a memorable and very quick visit with my family.  Why does time always have to fly by when you are having fun?  The kids were full of excitement and energy on Christmas morning in spite of waking at 5:00am.  It’s that energy that makes the holiday!

Sophie came running down the stairs Christmas morning and yelled out after looking at all the presents under the tree “I guess I’m NOT on the naughty list!”,  kids say the funniest things!  Confession, Drew and I may have abused the  “remember Santa is watching you” line just a little this season.   Santa was very kind to all of us, leaving so many fun gifts for all to enjoy and lots of wrapping paper for Lucy to rip.  Every year for Christmas I tell the kids to ask Santa to give Mommy a nap for Christmas, this year was no exception.  I was able to sneak away for an hour and laid my head down on my pillow for a much needed rest.  Isn’t that what Santa does when he returns home Christmas day?

(Megan and Sophie were giving a very special doll house for Christmas.  The house was made by my grandparents who gave it to my sister and me when we were seven and eight.)

The day after Christmas everyone left to go home and it was just the six of us.  We were sad to see everyone leave, but looked forward to spending time together as a family of six.  Our plans for our week together included playing with all of the new treasures that Santa delivered, napping, having some pajama days, baking cookies,  painting our family room, painting the girls room pink of course,  painting Jack’s room orange his favorite color, getting caught up on way too many little things, NO medical appointments, reading, watching movies, playing games,  having Wii fit competitions  (so much fun:), lots of funny discussions about New Years resolutions and why people make them,  and stopping to take the time to observe and enjoy Christmas through the eyes of our babes!

We all rang in the New Year at 10:00 pm on New Year’s eve. I believe that this would be the first time we were ever early for anything this year, or should I say last year?  We sipped sparkling cider, snacked on yummy hour devours, took a bubble bath, and giggled until our sides hurt so badly we had to stop.  Last year was a memorable year for our family in so many ways, so much has changed in our lives that I could write only about that topic and it would probably take me the next year to describe.  We are looking forward to what the new year has in store for us, yet we are hesitant to plan too far into the future.  Drew and I have resolved to take each and every day as they come making the most of the every day.  This is so much easier to say than do.

On January 4th our first born and only son turned nine!  Wow!  I remember every detail of  the day he was born like it was just yesterday.  Life’s most memorable moments are never forgotten!  Jack was the first to make us a Mom and Dad, he makes us so proud.  The past nine years have gone by faster than any other nine years in our lives.  This year he is into skateboards, Pokemon cards, video games, origami, books, soccer, science, and anything “techy” or “gadgety”.  It’s scary how much he knows and how much I need to learn.  We look forward to living life with a nine year old, and a six year old, and a four year old, and a almost two year old.