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....

Defying the odds

So Madilyn and I recently went to Milwaukee for our first 4 day trip all by ourselves.  We had our first appointment with Endocrine to track her for possible growth hormone intervention.  The doctor and I mutually agreed that this is something that would be years away and will probably never happen.  With all of the other medical issues and procedures that she has already been through I don't feel at this point that subjecting her to daily injections just in the hopes of her being 5 feet instead of 4 foot 8 just isn't worth it. They also did a kidney ultrasound and lab work just because they are standard for Turner's Syndrome girls.

We then saw Special Needs Care Coordination, they are my lifeline, my sanity and my sounding board.  I would be lost without them and they love Madilyn.  They help with coordinating all of her appointments and equipment changes.  Our goal is to get everything coordinated so that maybe we will only have to go to Milwaukee once every 3 months next year instead of 11 times like this year............:)

Dr. Ruttum, the pediatric ophthalmologist was next.  He is thrilled with Madilyn's vision in her right eye and the glasses are doing their job so we'll see him again next year.

We back-tracked from Milwaukee to Green Bay one day to see the GI doc.......Dr. Gurram walked into the room and was talking and when he saw Madilyn he burst out laughing and said "oh my gosh, she's beautiful, I made her fat!!"  He couldn't get over how amazing she looked and how well she is doing.  The 3 pounds she gained in the first month after surgery is double what they anticipated so we have now cut back her feeds a little and are working on oral eating too.  The progress is slow but it's progress so we'll take it.

Our final appointment (the big one) is Neonatal development.  This appointment lasts up to 3 hours and Madilyn is fully evaluated by the nurse, the physical, occupational and speech therapists and then sees Dr. Baer.  This appointment is very frustrating for me because they ask questions like "do you think she actually knows who you are?"  This question hurts.  Of course they very quickly realize that she most definitely knows who I am and that she's capable of incredible things they never thought she'd do.  Dr. Baer informed me that according to all medical reasoning Madilyn should basically stay an infant, she should not be able to do any of the things she does much less be making even more progress.  She asked me if it was my goal in life to defy hundreds of years of medical research and history....this made me laugh.  I told her that was just bonus cause my only mission in life is to give Madilyn every chance possible at an incredible life.

I knew the moment she came out breathing on her own that she would defy everything.  My sister thought I was a lunatic because the medical facts spoke the complete opposite of my heart.  Madilyn is here to teach us all something and she proves that every single day.  At least three times in the past year we have heard that she should not be alive or that she should not have survived the illness she had, but she does and she's happy and healthy now and thriving in every way possible.

This very week one year ago was the absolute hardest week of my life......it was the week that I confronted my daughter's drug addiction head on and chose to go to court to take custody of Madilyn away from her parents.  I was adamant for a very long time that we would always be grandma and grandpa and we are but we also answer to momma and dada too...........September 14th is a day that we have chosen to turn into a celebration rather than a sad day.  We are going to celebrate Chosen Day every September 14th.  It is the day that we chose to put Madilyn first.  It is the day we chose to make a better life for her even though we knew it would rip other lives apart.  We did what we had to do and have not regretted it for a moment so now we choose to celebrate it.

I have hopes for this next year for much progress and healing for my heart and my family.  I hope to eventually begin the healing process and learn to communicate with my daughter again.  I hope for no life threatening ordeals and fewer trips to Milwaukee...........I am going to embrace the calm (and chaos) that is my life now and love every moment of it. 

answers...answers...answers...

So things have been crazy......we switched GI doctors in July and the new one if fabulous.  We absolutely love Dr. Gurram.  He let us try the formula change and it worked great momentarily.  We monitored her weight twice a week for a few weeks and had minimal luck.  The dreaded vomiting also came back with a vengeance. We have tried every thing we could think of to keep the food in her so she would gain weight and nothing worked.  So after much consultation and education we knew the switch from the G-tube to the G/J tube was coming.

On Friday, August 2nd Madilyn had not gained any weight again, she was maintaining at 14lbs 4ounces and I let them know when I called in her weight check that the vomiting was horrible.  We received the phone call later that afternoon that it was time to switch and they wanted us in Milwaukee asap.  Arrangements were made and Monday they called and told us to get there now and that she was a direct admit with surgery the following morning.  We were absolutely terrified.  The thought of being attached to a tube for up to 18 hours a day in order for her to get her much needed nutrition was very scary.

When we arrived at the hospital we discovered that she had dropped to under 14lbs.  This was heart breaking...we also discovered that her sugar level was only 42 and this was with normal feedings with excessive vomiting.  Her other blood levels were all off too.......poly-carbonates were low and so was her magnesium levels.  I was terrified, as sugar levels were a huge problem when the mystery virus struck us in early February. 

Surgery to do the EGD scope to check for damage from the vomiting or other problems went great and so did the tube change.  There is minimal damage that needs no medical intervention, it will repair itself and although the new tube was shocking to see, it is working wonderfully.  She has gained a pound in 6 days and within 24 hours the pink color came back to her cheeks and her eyes don't  have that sunken tired look anymore.  Within 36 hours after surgery we were thrilled cause her weight had jumped 8 ounces or so already but we were equally discouraged because the dreaded vomiting had not stopped.  The team of doctors decided to try a suction bag hooked up through the g-port on her tube and as soon as it was hooked up the vomiting vanished. 

The vomiting was strictly excess stomach juices she was producing because her stomach was so irritated.  At first she was attached to it 24hrs per day but we're already down to only when she's completing her feed in the morning and while she's awake feeding in the evening.  We have been able to progress her feeds enough that we already have 8 1/2 hours per day that we're not attached, by Sunday she'll be down to 14 hour feeds that leave us 10 hours every day of freedom.  The only thing she gets in this "freedom time" is her Pedialyte
feed to replace all of the protein and electrolytes she loses through the stomach juices.  Even that has reduced drastically.  The first few days the replacement feeds consumed 3 hours of our "free time" and today it's down to less than half of that and I do it while she's napping so it's not a big deal.

For how terrified we were of this change we laugh now because it's actually very freeing.  She gets plenty of floor/jumparoo and exersaucer time when she's not attached to anything and we work on our sitting therapies and figured out how to attach the pump bag to the walker when she is attached.  We also get to go out for walks every day as it is very easy now when we are not rushing in between feeds and vomiting.  We actually got to stop and visit with friends the other evening on our walk and didn't have to worry about rushing.  It's been amazing.

As for the answers, when we were admitted and they did her labs they started an IV in the middle of the night, running it at an extremely low rate.  Dr. Gurram came in bright and early on Tuesday and explained that he knew what the "mystery virus" was from February and that we were definitely correct in saying that it almost killed her.  It's very rare and it's called Refeeding Syndrome.  When Madilyn had the chronic diarrhea for 6 weeks in Dec/January it ended up making her malnourished (nobody ever said this to us then).  The diarrhea stopped the same day we switched to Pediasure and she became extremely sick immediately after that with the massive vomiting and fever which landed us airlifted to Milwaukee.  A person can become malnourished within 4 days of being ill and the body depletes all of its stored resources that keep sugar levels, magnesium etc somewhat level, when complete nutrition is suddenly introduced the body sometimes doesn't know what to do with it and it goes haywire and can start shutting systems down.  It can cause cardiac arrest, respiratory distress and organ failure.  Dr. Gurram told us repeatedly how lucky we are that Madilyn survived.  All of the feeding problems multiplied after that and I blamed the Pediasure, in reality it is because her GI tract partially shut down in order for the rest of her body to heal and thrive.  Dr. Gurram is very hopeful that with the J-tube and proper nourishment her GI tract will heal and begin to function normally again.  It will take time and there are no guarantees but we are hopeful.  Refeeding Syndrome is something that Madilyn will always be at risk for since she has already had it once but it's ok because it has a name, we can educate ourselves and her doctors are aware of it now so it can be dealt with properly.

So at this moment we are thankful and blessed.  Progress can be made, Madilyn can heal and we can work towards progress with the oral feeding since there is no more vomiting.  All in all.............it comes down to we can either focus on the negatives: trips multiplying with the new tube, financial stresses and rare syndromes or we focus on the positives: answers, progress, living, laughing and love........We choose the positive!