Monday, March 29, 2010

A long overdue update…

It has been a crazy busy past few weeks.  I am behind in lots of areas of our life including updating our blog.    I can’t seen to find the time to complete a thought much less write one down, but here goes…

Spring has finally arrived and with that comes the desire to want to stay and play outside!   This is the time of year when you feel soooooo guilty for doing anything indoors that your indoor responsibilities get put off for rainy days, if you can afford to put them off.  I guess you could say that I am “in debt” to my household responsibilities.  All of the kiddos are enjoying the warmer temperatures and longer days, even Lucy.  We are faced with the challenge of having a “mobile” toddler this year.  Lucy uses her walker outside since it is not easy for her to motor plan how she is going to get from point A to point B.  She really relies on her walker for stability and support as her balance and stability are…um….how should I put this…like watching someone leave the bar at at 2 am.  In medical terms she has ataxia, lack of motor coordination, in addition to her being hypotonic, low muscle tone.  Oh yeah, I unknowingly hold my breath when she is tooling around.   At the end of the day it’s no wonder that my shoulders feel like they are above my earlobes.

March is birthday season in our home, it begins with Lucy, three days later mine, eleven days later is Drew, and we conclude on April 7th with Megan’s.   We then have a lull until August when we will celebrate Sophie’s much anticipated fifth birthday!  Whew, that gives us all some time to crave birthday cake again.  We celebrated Lucy’s birthday with many of our friends who have helped us survive Lucy’s first two years.  My birthday was more of a celebration for the kids, we did go out for dinner with some close friends.  As for Drew’s birthday, I surprised him by arranging a date night, Alicia and Paul watched the kids for us.  What would we do without Alicia and Paul?  We went out to dinner just the two of us, and then came home and had cake with everyone.

It wouldn’t be an update without an appointment update, so here goes…Lucy had her two year baby “well check” a few weeks ago.  Lucy has her issues that are being addressed by many of her multiple specialists, regardless our pediatrician listens to me describe them and then gives me her input.  Very often she provides a point of view that I haven’t thought of or validates what I have been thinking all along.   I discussed with her Lucy’s lower than normal tone, erratic heart rates, continued sleep issues, and GI concerns.  We have noticed that Lucy’s tone is what has changed since being sick in February.  She is more ataxic than usual and she is toe walking when she is not wearing her AFO’s.  Lucy’s hips are loose, which we believe could be a reason for the toe walking, she is using different muscles to overcompensate for her weak hips.  We concluded that Lucy needs to see orthopedics to ensure we are not overlooking a more serious issue.  I have been asked on many occasions about vaccines for Lucy.  We do vaccinate Lucy, but one vaccine at a time so as not to overstress her body.  Lucy’s body reacts to vaccines with fever, fatigue, and irritability.   This time she had all three reactions, but she didn’t seem as bothered by them as she has in the past, or maybe we are just so used to her symptoms that it is just par for the course.   Also during this appointment  I completed a questioner that pre-screens for Autism.   In September Lucy did not pass; however, this time she passed!  Lucy has changed so much in last year, even more so in the last three months especially when it comes to her social development.  In addition to this appointment and her GI appointment we had earlier in the month, Lucy had her annual ophthalmology check which looked closely at her optic nerve.  Good news,all looked well…ha, ha!  

April comes with it’s appointments too: GI nutrition, metabolism and genetics, and neurology.  Drew and I have our concerns for Lucy and we need to follow up with Dr. R about his conversation with Dr S.  We will discuss doing a sleep study with neurology, hope for a weight gain so that we can have a smooth appointment with GI, and with metabolism and genetics I honestly don’t know what will come of that appointment.  I heard through the mito grapevine that there is a swab test for mitochondrial genetics that is being done by a CHOP lab but not a CHOP doctor, I hoping to learn more about this, but I won’t hold breath. 

In the past month I have had the opportunity to attend several meetings for families that have kids with “special needs”.  With any change in life, seeking others who can relate to what you are experiencing is a  great way to feel like you are accepted, and or “normal”.  Just hearing others talk about their experiences and vice a versa is therapeutic.  Almost always these meetings are with a group of moms, which is wonderful for me as a mom but doesn’t include Drew or the kids.  We had a unique opportunity as a whole family to attend a support group for families who are affected by someone with a chronic disease.  It was the first time that I think that Drew and I shared our story together with other families who could relate to the many emotions of having a child like Lucy and raising a family at the same time.

Life is busy, but we are determined to stop and smell the roses!  This week our kiddos have spring break, we are hoping that the weather will return to more spring like temps so that we can go outside again and enjoy.

I am so behind in updating that I can’t fit into one post all the thoughts swirling in my mind, I will save some for another post. 

Hope all is well in your homes tonight.    

Economics 101?

November 24 - December 14, 2009 051

“Mommy, Daddy say’s we can go to the store and buy more money!”

“Sophie, do you mean Daddy said you can go to the store and bring money?”

“NO, daddy says I can buy more money!!!”

“Sophie you have to EARN money!  You can’t buy more money at the store.  You bring some of your hard earned money to the store and you buy what you need with your money.  Do you understand?”

“Yeah, I get it…”

“So Mommy, the thing is if you want more money you need a harder job, if you want less money than you have an easier job!

“I think you are understanding my dear. :)”

Sophie leaves to find her piggy bank, and I hear her say,

“Daddy, you were wrong!”

Thursday, March 25, 2010

Help Us Find a Cure!

Blogging has been such a wonderful way for us to share our life experiences.  We have met some wonderful families all across the country and world who share many of our experiences, as they too are living the Mito life.  Several weeks ago a fellow Mito mommy, Amber Greenawalt, contacted me about a video she wanted to make to help raise awareness of Mitochondrial Disease.  I think she did a wonderful job!!!   You may recognize a special little red head of ours in the video.

To help us find a cure for Lucy Grace and the many others suffering from Mitochondrial Disease please support the United Mitochondrial Disease Foundation, www.umdf.org.

 

Monday, March 22, 2010

Yikes!

Oh my has it really been over a week since I last updated?  I just wanted to let you know that we are still here, and are doing well.  I will post an update soon.  Life is good but crazy…

Wednesday, March 10, 2010

A Week in Review

Well… maybe not a week because I don’t think I can recall what I did last week at this time, but a summary more or less of what’s been happening most recently in our life.  In an effort to save my brain from trying to connect one thought to another in nice neat paragraph form, I’m just going to list in the order in which my brain can recall some of the more recent happens in our life.

1.  Lucy had an appointment with her GI doctor yesterday.  In many respects it was one of our easiest appointments.  We didn’t make any changes to her current feeding schedule or medications.   Her GI didn’t get all worked up over her loosing a few ounces from last months appointment because as well all know, Lucy was sick. Things with Lucy have really remained the same GI wise since the middle of November.  We should be feeling good about this appointment; however, there is a lingering concern over what we are going to do when Lucy can no longer grow on the calories and feeding rate that she is at currently.  Attempts to increase her feeding rate have been unsuccessful, her motility is slow…poor…pathetic…just plain stinks.  When we try and bump her rate she is miserable, often lays on her back, hiccups, and makes horrible noises I have only heard a sick cat make…it is just not good!  Our attempts at increasing her feeding rate with a GJ tube proved to be unsuccessful as well.  Her intestinal motility is just as slow if not slower than her belly.  She is malabsorbing  her food.   In other words the food is going in her at a fast rate but her body cannot process the nutrients fast enough, hence all of the diarrhea.  Increasing her calories per ounce is what we have been doing to keep her growing, but we are reaching the point where we can no longer do this and keep her hydrated.  Motility medications are not seen as being beneficial for Lucy, there is concern about the neurological side effects of these drugs on kiddos like her.  Frankly, whenever I hear that there is a potential for neurological side effects it scares the c**p out of me.  We are forever weighing the pros and cons of any medicine, procedure, test...  There simply is no manual or “how to guide” for Lucy, we will just continue to do what we have been doing all along, try and make the best decisions for our girl.

2.  We are gearing up to celebrate Lucy’s second birthday on Friday!  Our little red headed girl is soon going to be two.  Some have said that they can’t believe that she is going to be two, already.  For us, the last two years have in many respects been the most life altering two years of our lives.  

3.  On a much lighter note, we can finally see our grass again.  Most of the snow has melted and the temps are in the fifties.  This year more than usual we are looking forward to spring.  Once again I missed the boat last fall and did not get any spring blubs planted, in Sophie’s words “shucks” is all I have to say.

4.  Speaking of Sophie, she is in heaven scavenging our house for presents she can wrap in gift bags for Lucy’s birthday.  Everyday she asks me if today is Lucy’s birthday.  “No”, I tell her, “Lucy’s birthday is in x amount of days”, to which she replies gleefully, “so it’s tomorrow!”  I think future party planner could be a potential occupation for Sophie.

5.  I attended my first UMDF meeting in Philadelphia this weekend.  I am feeling led to do something…. to help raise awareness of mitochondrial disease, which will hopefully raise funds, which in turn will ultimately lead to finding a cure for this baffling disease that affects our family and so many others.   I was asked if I would help serve on the board and work with the committee that organizes the Annual 5k Walk for Energy.  I guess this is the something I was led to do.  I am looking forward to helping organize this event, getting sponsors, and creating teams to walk in honor of our Lucy Grace and many others who are affected by  mito. I will have much more information on this in future blog posts, you can count on that!

6.  We had an appointment last week, or maybe it was the week before, with the developmental pediatrician at DuPont.  I can’t remember anymore what appointments happened when, going to appointments is so our norm.  All I  am going to say about it is, whoa!  I’ll dive into the details of this at a later time.  One good thing that came out of that appointment was a referral to the augmentative communication specialist.  Nine calls have been made so far to outpatient therapy to set up this appointment, I think it will be lucky number ten that will actually get a scheduler to call us back.

7.  Jack has been playing indoor soccer for the last month and the team he is on is actually doing well.  So unlike his fall soccer team who were unable to win a single game.  He is enjoying it, and we are all having fun watching him play.

8.  Once a year at Megan’s school the kids publish a story that they have written.  The stories get typed, bound, and displayed in the library for all to read.  Megan’s story was entitled “Picking Pumpkins at Wal Mart”.  Yes folks, this year we took the kids to a pumpkin patch in Amish country on a Sunday.  F.Y.I. the Amish do not work on Sunday, hence the title “Picking Pumpkins at Wal Mart”.  When I went to read Megan’s book, the first page read “dedicated  to my mom and dad”.

It’s late and this is getting rather long.  Here’s hoping for a “good”nights sleep.   

Sunday, March 7, 2010

These faces…

These faces are the faces that define me,  that make me the person I am today.

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I have been working on a little project for Lucy’s upcoming birthday this Friday.  I look forward to sharing it with you.