It’s snowing like crazy!

It is beautiful outside!   The snow is falling at about an inch an hour, we feel like we are on the inside of a snow globe.  It is blowing and drifting and really difficult to see how much snow has actually fallen, there is easily eighteen inches on the ground.  The snow started falling here at around 4:00pm yesterday, the kids had an early dismissal so that the buses would be off the road by the time the storm hit.  Jack and Paul were thrilled since it allowed their sleepover party to begin sooner!

  

Our “girls night out” plans were not hampered by the snow.  Sophie wanted to invite Daddy and Lucy to come with us because she didn’t want daddy to have to eat dinner all alone, she is so thoughtful that one.  Megan was not as concerned about Daddy and Lucy, but after some consideration she too was thrilled to have them join us for our night out.  I was the most thrilled to have Drew with me because that meant that he could brush all of the snow off the car, help to carry the girls in and out, and I love spending time with him too.  We did end up going swimming last night at our local YMCA.  Our Y is just around the corner from our house so we felt safe venturing out. 

We were a little worried about taking Lucy swimming because she has a difficult time maintaining her body temperature.  Once her body temperature falls below 95 degrees she has a difficult time getting it to go back up.  The pool was warm but the air was cool, Lucy is so pale that she looks cold no matter what but you can really tell when her body temperature starts to fall because her skin gets a bluish hue to it.   Swimming is a big workout for Lucy, it is very taxing on her body.  She loves the water… for about ten minutes, after that she wants to lean against someone or something so that she doesn’t have to try so hard to balance.  Another big issue that we worry about when taking her swimming is aspiration, she keeps her binky in her mouth most of the time, but water is splashing everywhere.  Last night we were only one of two families swimming in the pool so that made for calmer waters.  Megan and Sophie were like mermaids in the sea, they were so happy to have the pool almost all to themselves.  They missed having Jack in the pool with them last night, it felt strange not having him with us. 

We swam for about an hour and then wrapped the girls up in their towels and Lucy up in two towels and a hat and headed for the shower.  Drew washed girls as I dried them off,  dressed them, and blow dried their hair.  Oh me, oh my do my girls have A LOT of hair.  Megan alone has enough hair for at least two people.  The girl has been blessed with very thick, beautiful, hair!  She inherited the Asian gene for thick hair.  Sophie and Lucy have a lot of hair too, but not nearly as thick as Megan’s. 

When everyone was dressed and dried we headed out for our Friday night usual, pizza.  We generally place an order for take out, but last night we conveniently decided to try a restaurant close to home.  Again we were only one of two families eating in the restaurant, it made us feel better knowing that we aren’t the only crazy ones.  Half way through our meal Sophie didn’t feel so well, she was complaining of a stomach ache.  She has been having issues with constipation again…still, but couple that with swallowing a gallon of pool water and she just plain felt awful.  I feel bad for her, I am going to schedule an appointment for her to see Lucy’s GI doctor.   We are concerned.

 

When we got home Sophie felt a little better and wanted to call Jack to tell him good night.  Jack sounded happy and tired. After speaking with Alicia this morning I learned that the boys went to sleep just before midnight and woke at seven, they are going to be tired today.  I also learned that the red and black check pajamas that I bought the boys for Paul’s birthday have turned Alicia’s house a not so lovely shade of  pink.  Everywhere the boys have been the pink has surely followed, sorry Alicia.  It will be a sleepover that will not too soon be forgotten :).

Apparently we need to be bracing for a storm…

It’s February on the East Coast and big surprise…they are forecasting a huge snow storm.  Every big snow storm that we have experienced in our eight years of living out here has happened in either December or February, and almost always on a weekend.   I have been told that we are getting anywhere from 18-24 inches, these estimates seem to be changing by the hour so I guess we’ll just have to wait and see.  Things are already being cancelled for the weekend and groceries are flying off the shelves at an astronomical rate, but they aren’t flying through the check out lines at the same rate.  The lines are ridiculous!  I walked into the grocery store earlier this evening because heaven forbid we are out of Cheerios, much to my surprise the lines to check out were all the way to the back of the store, all of the lines! I know running out of Cheerios constitutes an emergency in our house, but I think that even Lucy agreed that mommy or even better daddy should come back after bedtime and try again.  If they are all sold out of Cheerios at the store then let this serve as a warning to all my neighbors, there will be a desperate mother or father knocking on their doors in search of the only food our daughter can eat. 

Seriously, my first instinct was to call in refills for all of Lucy’s meds that are running low.  During the last snow storm we had in December we needed a very specific nebulizer for Lucy as she was sick and not breathing well.  We ordered it through a local medical supply company because they could get it for us the next day.  We paid an extra $56 for overnight shipping only to have a certain express delivery service not deliver it the next day because of the storm, how frustrating!  I am forever learning!  We have what we need to get through the weekend and most of next week, except for the Cheerios,  Drew is working on that as I type this.    

We have a jammed packed weekend in store for us, but I think that we may need to formulate a plan B just in case.  Jack is having his first official sleep over at his best buddy Paul’s house tomorrow.  He is going to be going home on the bus with him and staying until Saturday afternoon.  I think that he will get there with no problems as the snow is expected to start falling at around noon, if anything they will get dismissed from school early which will make Paul and him even happier!  We’ll have to see about coming home.  He is hoping that he will get snowed in at their house and have to stay even longer,  FYI Paul lives but a few miles from our house.  I have plans for a girls night out with two of my three little girls.  I have been a little vague on the details with the girls as I am not sure what the weather is going to allow us to do.  I am hoping that we can at least go out for dinner.  Sophie is hoping that I will take her to the pool,  the thought of swimming during the middle of a snowstorm gives me the shivers.  Drew and Lucy have a dinner date with some Cheerios, if he can find them.

On Saturday night Drew and I have plans to celebrate Valentines day a little early this year, we are planning to be early love birds and avoid the flocks of other love birds .  Our friends the Puff’s have offered to watch our brood in exchange for us watching their brood the following weekend, this is such sweet deal.  We’ll just have to wait and see what the weather has in store for us love birds. 

Sunday we are invited to a super bowl gathering and although I could care less about who wins the super bowl, my husband does.   I think that no matter what the weather has in store for us the snow should be all done and over with by Sunday evening.  Hopefully, we won’t have too much trouble going up the street to their house.

Drew and I were born and raised in the Midwest, in Wisconsin none the less.  We can handle, and in fact enjoy a few feet of snow; but we don’t live in the Midwest anymore, this is the East Coast and snow equipment ain’t (I know this isn’t a world but I just wanted to get my point across, Jack:) what we’re used to.  They plow our neighborhood with a pick up truck that has a plow attached to the front of it.  Eight years we have lived out here and we still can’t get over that.  Whatever happens, I see four very happy faces with rosy cheeks, runny noses, and hot chocolate mustaches in our future.   

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:)