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...........