Blessings and meltdowns

We just returned from Milwaukee and our first round of good appointments for this year.  Madilyn has a fluid pocket on her right eye that could potentially detach her retina.  It was discovered in November during her eye exam under anesthesia.  Dr. Han (the retina specialist) feared it may detach in between appointments or that it would progress and he'd have to do another scleral buckle both outcomes could quite possibly leave her completely blind.  We were blessed and there was no change.  It is maintaining and we will return in March for another eye exam under anesthesia to monitor, as we do every two months.  We'll continue to pray that it doesn't change or that it goes away, in the mean time we count our blessings every single day that she wakes up and can see us.

We next saw her GI doctor and he couldn't be more pleased with how much she's growing and how much she has progressed and changed since her surgery in August.  We see him every three months but he was nice and let us slide a few extra weeks this time since she was gaining so well and didn't make us travel right before Christmas.  Once again we count our blessings.

Our trip was extremely emotional, like riding a roller coaster.  I don't know how to explain the emotions that come along with knowing your child is going into surgery with vision in only one eye and could potentially come out with none because they're trying to save it.  When Madilyn had the first scleral buckle done the scar tissue she produced afterwards did more damage, the bad almost outweighed the good.  We go into this now knowing that the scleral buckle may be our only hope each and every time she goes into that surgery so we pray.  Every single morning that she wakes up and I know she can still see me brings me to tears.....and again, I count my many blessings.

I also got to witness her GJ feeding tube change on this trip.  It is done in Intervention Radiology and is painless for Madilyn other than she gets mad cause I had to hold her still for two minutes while they did it.  We all know how much two year olds love to be held still...she was one angry little girl, thankfully it's super quick and the staff was awesome.  Once again I count my many blessings.

After the roller coaster ride we head home with happy reviews and run into horrible weather and the first leg of the trip that normally takes 2 hours takes 5.  The first part when we could have easily turned off was all right and of course when we should have stopped there was nowhere to go.  The stretch of nothingness seems never ending when you're going 5 mph trying to keep a toddler occupied while she's gagging herself every two seconds and throwing up because her throat is so irritated from the anesthesia the previous day.

It's after the weather clears when I admit to my husband how scared I was but everything is clear and we keep heading towards home.  At this point the toddler is finally sleeping peacefully after hours of Roli Poli Olli on the portable DVD player (if I never hear that again it's too soon...).  It's in this clear silent stretch somewhere between Crivitz and Iron Mountain that everything crashes in on me and the tears start.  Unstoppable tears of relief and frustration.  Relief she can still see, frustration cause the relief only lasts for a moment.  Tears of fear because the GI doctor wants us to start doing daytime bolus feeds again with Madilyn.  Bolus feeds for me bring back months and months of massive vomiting and our life revolving around a feeding/puking schedule.  At the same time I am hopeful that her stomach is healed enough to handle the feeds without the vomiting.

It's during this time that I am thankful that my husband is focused on driving or obliviously lost in his own whirlwind of emotions and just lets me cry, I don't want to talk, just cry.  This seems to have become somewhat of a ritual for me, one I feel I have no control over.  Either way when it's over and I'm done crying my tears of happiness, relief, anger and frustration I look into the face of that sweet little girl that calls me Nana and count my blessings.  I chuckle to myself at how far we've come because this is the first trip that she actually told the surgical prep nurse No...a very clear, very distinct no when she wanted to check her vitals.  She also yelled at the GI doctor until her told her he was only going to listen to her and she understood and stopped yelling and let him listen to her.

It's hard to explain the emotions that come along with Madilyn's reactions to walking through the skywalk at the hospital.  She knows where we are and she knows she'll get poked and prodded and doesn't hesitate to express her dislike of the whole situation.  The older she gets the harder it gets, at least when she was smaller she was oblivious......I thank god every single day for the progress we've made but at the same time question all the time why children like my Madilyn have to go through the things that they do.  She doesn't like them touching her, the whole experience is very upsetting to her and to us.  No matter how great the appointments are I come home feeling like I've been hit by a truck and so does Madilyn.  We always take the day after we get home off........off from therapies, off from visitors and just hang out in our jammies at home and play.  It is much needed down time that we don't get very often.

Just when I think the roller coaster has almost slowed to a stop it's time to call and schedule the next round of appointments....the last few times I've let Special Needs Care Coordination handle this for me but this time I did it myself...........so the coaster is set at a slow, straight, steady cruise for two months...where we'll be busy making progress at home and getting ready for the March, April and May appointments....but most of all we'll be busy counting our blessings.....

Wishes and Reality

I spent all of last year wishing and wishing for less trips in 2014.  I can't even begin to count how many times I've sat down and tried to figure out how to make less trips to Milwaukee.  The countless hours wishing and praying for less trips.  We had ten of them last year and more than half were anywhere from 4-5 days.  Oh how I wished for less trips.....................

Then we saw the retina specialist in November and he completely crashed that idea when he discovered the fluid pocket on Madilyn's right eye (the only eye she has any vision) and we went from seeing him every six months right back to every two.  I was crushed............

We also found out around that time that a hospital only two hours away vs the 7 we travel is capable of doing Madilyn's G/J feeding tube changes every 3 months and I got sooooo excited............and then they refused to see her because her medical history/diagnosis is so complex.........they're afraid of her.  So once again I was crushed..............

So I had my pity party (which lasted about 8 minutes) and reassessed the situation and made my wishes more compatible with my reality.  We traded the most beautiful, luxurious, spacious gas guzzling Tahoe for a comfy, fun to drive and fuel efficient car.......we ordered a portable DVD player to entertain the Peanugga on these trips so she can watch her favorite cartoons and listen to her music videos in the car and during the long days at the hospital during appointments..........and I altered my wishes.

Now I wish for good appointments instead of less.  I wish for the chance to go to the zoo and the aquarium while on these trips and to have at least one meal that doesn't come from a drive-thru, hospital cafeteria or mall food court on at least half of the upcoming trips.  I've come to  terms with the fact that no matter how "healthy" we get Madilyn and regardless of how much she is thriving all the risk factors are still there.  I've accepted that no matter what they will still want to physically see her in order to monitor her and in most departments they have no other option.  Neonatal Development has to see her twice per year to track her progress to assign or redirect therapies for her, Endochrine has to track her growth, GI has to monitor her growth and her feeding tube, Neurology has to monitor her shunt and her Dandy-Walker, the retina specialist has to continually see her in hopes of maintaining her vision, the ophthalmologist has to see her to moni.tor her glasses/vision needs and Genetics has to see her because she is one of a kind in the world so they have to monitor her because she wasn't even supposed to live with her chromosome lines much less thrive.  So we wish for good trips and happy specialists and for no life threatening illnesses this year.

In the past few months we've had never ending ear infections (at least it felt that way with 3 in a row)...c-diff and 2-year molars and through it all Madilyn has made huge progress...she went from being completely uncooperative at physical therapy to showing off.  She's taking steps and running everywhere in her walker which is awesome because we get her gait trainer (a walking aid) in two weeks and are very excited.  She's suddenly back to putting food and everything else in her mouth so it makes me hopeful that she will start to consume something orally instead of just through her feeding tube.  We are also nowhere near as dependent on the suction bag because her stomach is finally healing and that is amazing!!

I guess sometimes I forget how complex Madilyn is medically because we live it every single day.  We don't take anything at all for granted but at the same time it is our "normal".  My "job" is different therapy appointments 5 days a week, feeding tubes, shunt function and having fun with the sweetest little girl ever who has the most amazing belly laughs I have ever heard.  If you had to wait over 1 1/2 years to hear those laughs finally come out you would totally understand why they bring tears to my eyes every single time.......to me, it is the most beautiful sound ever.....

So we still wish and dream because without wishes and dreams life doesn't have meaning.........we just make sure those wishes aren't quite so unattainable..........and we will shop for new little pink tennis shoes because in reality it's all about the little pink shoes...........

I wonder....

I wonder about a lot of things.......
I wonder if each of you reading this knows how much you mean to me?
I wonder what life would be like without so much financial stress?
I wonder is Madilyn's ear infections are ever going to go away?
I wonder if she's ever going to sleep through the night again?
I wonder what I'll do when she goes to school? what type of school?
I wonder if Madilyn is ever going to go back to eating somewhat normally or if being tube fed will always be part of our/her life?
I wonder is she will be self-sufficient someday or will she always need a caretaker?
I wonder if our therapists realize that most weeks they are the only adult interaction I have other than my immediate family and the teller in the checkout line?
I wonder what people think of me reaching out for fundraising help so we can attempt to breathe?
I wonder if I'll ever be able to go to work again or if full-time caregiver is my life?
I wonder if people, even those closest to me, realize just how often I cry?
I wonder if others realize just how much my children inspire me to be a better person?
I wonder if we will have to move away in order for my husband to obtain a better paying/benefits providing job?
I wonder if she'll ever be potty trained?
I wonder what it would be like to go to the grocery store without a set budget and meals planned?
I wonder if people know how amazing my son and daughter are with Madilyn?
I wonder if my husband knows how much he means to me even though I don't always show it?
I wonder if people know how hard it is for me to ask for help?
I wonder how long Madilyn will continue to do her new little war cry in her sleep before she lets out the tiniest little toot and contentedly goes back to sleep?  Meanwhile, I'm awake watching her wondering why on earth she does that?
I wonder if people truly get as excited as I (we) do about the tiniest little accomplishments and milestones finally being met?
I wonder if her doctors/therapists know how overwhelming it is to know we have to add even more therapists?
I wonder if people realize how lonely and overwhelming our life can be at times?
I wonder if our new friend realizes how much it means to me to finally have someone in our lives that we have so much in common with?
I wonder most if people realize just how much I love my life even though it's a struggle?

Even with all of these concerns and wonders swimming in my head every single day I am learning not to dwell on them..........I am learning to live in the moment and for each tiny blessing that we have in our lives..........I am a work in progress, we all are.......I have learned to never, ever take anything for granted..not even the tiniest minuscule amount of progress or gesture of kindness.....

I guess my point of this whole blog is.....everyone has worries and concerns...we all have obstacles in our lives, some we share and some we don't....you never know what another person is going through..
So in the rush of our daily busy lives I ask that you :
1. smile at someone and say hello......it may be the only interaction they have
2. hold a door for someone or help carry someone's groceries
3. brush off the car next to you in the parking lot
4. attempt to do a random act of kindness every single day...........I speak from experience when I say it can change someone's life....:)

Things to be thankful for

Today we are thankful for the little giggles that fill our home with joy.  We are thankful that we are all healthy and happy.  We have a turkey in the oven and a roof over our heads.  We have children scattered everywhere and are feeling very blessed.

This past year has taught us so much about what we have to be thankful for.  It doesn't have to be the big things, there are little things every day that so many people overlook.  A year ago we were struggling with the Croup and Madilyn couldn't even hold her head up.  This year we are healthy and she's giggling, chattering and motoring all over in her walker and on the floor.

Our community has shown us more love and support than we know what to do with.  It's overwhelming at times.  The financial gifts, the toys and clothes for Madilyn all mean more to us than my words could ever say.  My sisters who have taken time from work to travel with me and sit in emergency rooms, to celebrate the little things and sometimes to just listen to me and let me cry, without them I don't know where I'd be.

My husband for always loving and supporting every crazy idea I have and every rant I go on.  My children for being so tolerant and accepting all the changes that life has brought us in the past year.  My parents and in-laws even though they are far away for always checking in with us and helping in any way they can.

Madilyn's teams (all 8 of them) of nurses and doctor's that take incredible care of her and us.  They are always willing to go out of their way to help us in any way they can.  To the nurses and teams of doctors on W-11 at Children's Hospital for being so amazing during two scary hospital stays this past year..(we love you but hopefully won't see you this next year...)

I am also incredibly thankful for each and every one of you that takes the time to read this blog.  For the moment in time that you take to share in our lives and to learn about the things we live with every single day.

We are thankful for old friends and new and for our therapists that have become like family to us.

Most of all I am thankful that the sun is shining, the Peanugga is smiling and we have little pink shoes...it's all about the shoes..:)

HAPPY THANKSGIVING!!!

Amazing and heartbreaking all in one trip

We just got back from trip #10 to see the Milwaukee docs yesterday.  I went into this round of appointments with complete apprehension about meeting the Renal Specialist.  We found out last month that Madilyn has deformed kidneys with two collecting duct systems.  The good news is that even though they have the deformity they are functioning fine and since she has never had a UTI or unexplained fever they are not concerned at all.  They told us that they only need to see her if she has more than three UTI's in one year or multiple unexplained fevers.  They also told us that typically if the extra collecting duct system was going to cause a problem it would've already done so.  I am thankful that it hasn't and they say it probably never will.

Madilyn was seen by Radiology for the first changing of her g/j tube.  She did very well with this as she had not yet woken up from the anesthesia from her eye exam so she didn't even know they did it!

Now for the eyes...Madilyn has Retinopathy of Prematurity (ROP) which has caused complete retinal detachment in her left eye leaving her blind when she was around 3 months old.  She had laser surgery while still in the NICU to try and correct it but it failed.  The retina in her right eye started to detach so they placed a Scleral Buckle around it when she was 4 months old in hopes it would not detach further. This worked great at the time and when she was 11 months old they snipped the Scleral Buckle so her eye could grow normally and she's done amazing since then.  Until this appointment...she once again has a fluid pocket behind the right eye.  Her doctor was very upset about it as there is absolutely nothing he can do to remove it without further impairing her vision.  He said "at this very moment it is not threatening her vision" but there is the very real possibility that we could get up one morning to discover that she is completely blind.

We were set to see him every six months for the eye exams but with this setback we are back to every two months.  In January when he sees her again there is the possibility of placing another Scleral Buckle depending on what he finds.  In the meantime, we pray.  We pray that she keeps her sight.  We pray that if she doesn't keep her sight that it is painless (I have no idea what it feels like to have a retina detach and it terrifies me that it will hurt her).  We pray...for understanding...for patience....for the unknown as our life is full of the unknown.

The one thing I know for sure is that Madilyn is happy and absolutely thriving with or without vision and she loves her new fuzzy pink slippers..

Therapy progress and setbacks

So everyone knows our whole life is about three steps forward and one step back.  Madilyn has earned herself a two week break from one of her physical therapists because she has been so uncooperative.  This was very upsetting to me personally but it has also taught me a valuable lesson.  Everyone needs a break sometimes to breathe and reset.  With Madilyn we are constantly pushing and encouraging and using every moment we can as a teaching moment.  She has therapists/home visitors 3 days every week and 5 days every other week, this is not including medical appointments.  I think her outright rebellion was her way of telling us enough already.

I took the break reluctantly and even eased off at home and just let a few days be lazy (for lack of a better word).  If she didn't want to put the blocks in the bucket or play at the music table I didn't make her.  I didn't make her do "just one more" before letting her scoot around the floor like she loves, and I didn't try sticking food in her face praying she would finally eat something every time she turned around.  This was a very difficult thing for me to do, but it paid off!!

She has suddenly, after six months of trying and encouraging, decided to go forward in her walker and when she hangs on to our fingers and pulls herself to standing she has started taking a few steps!!!  I can also put her in her highchair and put food on the tray and she's starting to put it in her mouth.  She is actually taking bites all on her own of the cheese puffs!!  I'm so excited.....she just wants to do it herself, when she's ready.  She's asking to go bye-bye on days when we're home all day and talking more and more.  It absolutely melts my heart and makes me cry rivers of happy tears whenever our little Peanugga does something new.

That was the three steps forward............the nasty C-Diff infection is the one step backwards.  C-Diff is a highly contagious intestinal infection that was caused by the antibiotics Madilyn took at the beginning of October for a double ear infection.  It causes nasty diarrhea, gas, cramping and an in general unhappy baby.  It has made for some very long nights as that is when she gets her feeds (her main source of nutrition).  Her j-tube feeds go directly into her infected intestines.

We are extremely thankful that after just a few days on antibiotics we have seen a complete turnaround.  She is sleeping better which is making for much better days too.  We are very fortunate because C-Diff can be very difficult and can lead to dehydration, hospitalization, kidney failure and sometimes it can be deadly.

If I never had to hear "that could've killed her" again I'd be a very happy grandma, unfortunately for me I don't see any time in the next few years that I won't have to hear that.  Madilyn is getting stronger every day and some things aren't quite as scary as they used to be.  I do seem to have the bad habit of taking my moment of meltdown with each new infection or setback and then I brush myself off, take a deep breath, pick my positive thing to focus on and keep going....

Did you know? Our Dandy Walker Life

Did you know that 1 in 2500 babies are born with Dandy Walker?  Unfortunately 54% of these babies will become angels within the first 4 weeks of life and another 32% by 6 months.  There's estimated 1 person out of every 30,000 living with Dandy Walker.  There are 3 stages of Dandy Walker.....variant, malformation and syndrome.  Dandy Walker effects the brain......in Madilyn's case she has a very tiny deformed cerebellum which causes balance and gross motor issues.  She also has a VP shunt for hydrocephalus (fluid build up on the brain because her ventricles don't work properly) and a slight deformity on the back of her skull that is covered by her hair.  We keep hearing that "on paper" Madilyn should basically be the mentality of an infant, she shouldn't know anyone or anything or be able to do the things she does.  In reality she's motoring all over, learning to talk and is delayed but is happy and thriving.

We have feeding issues and most recently a kidney ultrasound showed us that Madilyn has deformed kidneys that contain 2 collecting duct systems rather than 1 and she has kidney stones but her blood work shows that they are functioning normally.  We are adding Renal to our list of specialists that we see (they will be #8) and will meet them for the first time during our November trip to Children's Hospital in Milwaukee.

There are no two people in the world with Dandy Walker that experience the same symptoms.  Some people live their entire lives never knowing they have it.........babies die from unknown causes because they were born seemingly healthy full term babies with never a suspicion that something was wrong.  Others spend years wondering why they have balance issues or other problems only to finally have an MRI done and the diagnosis of Dandy Walker to answer their questions.

Is Dandy Walker really an answer?  In my opinion it at least gives it a name, other than that it tells us nothing and nobody really knows anything about it......the brain is so complex and so many things can be rerouted that they have no way of telling us what to expect.  It can wreak havoc on the entire body, it causes problems with other organs, muscle tone and strength, vision, feeding, speech, development and no two people are alike.

Up until this point we have felt very very alone and frustrated in our Dandy Walker life as most people have never heard of it but recently thanks to the internet I have found a whole world of us.  I can read and reread a million times the medical sites and government statistics on Dandy Walker but absolutely nothing compares to reading another post or having a chat with another parent/person who is living it.  It gives us comparisons and inspires new ideas to push our children to progress and achieve new milestones.  Dandy Walker (or any other special needs parent) is forced to think outside the box on a daily basis, we are forced to become the McGuyver of medical contraptions to figure out what aids and benefits our children the most.  We live in a world where we have no comparisons.  Nobody can tell us when or if our child will ever reach milestones.  It can be incredibly frustrating and lonesome and at the same time tremendously rewarding.

Our little Madilyn Rose and Dandy Walker has taught us to never ever take anything for granted....each day you wake up and can open your eyes is a blessing, each milestone and smile is applauded, praised and cheered for.  Each new word and discovery for Madilyn is celebrated usually with happy tears and a bombardment of my facebook page because I want the whole world to know.  In the same token a cold is never just a cold......a setback is just another bump in the road and absolutely nothing is the end of the world...she has taught me patience, compassion and an entirely new level of unconditional love.  She has taught us to choose the positive every single day and that all the medical terminology and gadgets just make me smarter and the new specialists give me a chance to make new friends.

Though our life is full of struggles......financial and emotional......I absolutely love it....Madilyn is such a blessing in our lives and so are her new little pink shoes....