Life Changing Updates

Well, it certainly has been a long time since I last posted.  Over a year, wow.

A lot has happened in the last year.  And our lives are forever on a different trajectory now.

Life hadn't been great for quite some time.  Things happened that can never be changed or taken back.  As a result, I filed for divorce in April.  Things were pretty messy for quite a while.  But, I'm happy to say that Ryan and I came to an agreement in mediation back in October and we are pretty much divorced at this point. All that is left to do is present it to the judge in December and have the order signed.

In April, Madeleine and I moved in with my parents.  There aren't even words to express the deep gratitude I feel toward them for taking us in when they did.  I know, I know, "that's what parents are supposed to do."  Sure.  And I'd do it for my children.  But, they didn't HAVE to.  Financially they have been a Godsend.  The support and help and love they have shown the two of us is indescribable.  I have to give them a lot of credit for my ability to bounce back from a truly stressful and life changing event.  My mom has been amazing on a daily basis.  Shoot, she'd make the most spectacular husband ever...maybe I should marry her.  Madeleine absolutely LOVES living with grandma and grandpa.  And I hope one day she will be able to remember just how much time she was able to spend with them during these last 7 months.  I honestly don't know what we would have done without my parents.  Today would certainly look quite different than it does.  I will forever be indebted to them.

My friends.  Man, they have all been spectacular too.  I have found comfort, support, shoulders, advice, and a good kick in the pants from all of them.  Sometimes I think my best friends knew me better than I knew myself.  I think they knew before I even did that my marriage was over.  They have helped me immensely to get back to the girl I used to be.  The happy, fun, motivated person I used to be.  I recently went to a wedding with some college friends and I had several people tell me that "college Melanie" was back and that I was giving off such a wonderful vibe again.  Those words meant so much to me.  I didn't realize how much I had lost and how miserable I was until I removed myself from the situation and started over.  My friends are my rock and I know they'll be there for me during this next chapter in my life!

Also in April, grandpa got sick.  It's been a very long road for the family, especially my dad who has basically been living with him since then.  He's 94 and dad promised to get him to 100.  So, we're all hoping that he pulls though and bounces back yet again.  I try to spend as much time with him as I can, and bring M to visit because I know he loves to see her.

In June my sister got married.  I was an absolutely beautiful, fun, and wonderful wedding.  I was blessed to be the Maid (Matron?) of Honor.  And it was amazing to be there for Ashley & Eddie to get married.  They have been so solid for the last several months for me too.  Lots of love and help and support.  They even babysat M for an entire weekend so that momma could go away with the girls up north.  Don't know what I would do without the two of them in my life.  I'm a lucky, lucky girl!

In July I had two pretty big things happen.  First, I went to North Carolina to meet 2 fellow preemie mommas that I've been internet friends with since before the kids were born.  These women have become a part of my daily life.  We talk nearly every day about everything.  They were with me while my marriage was crumbling and I felt I couldn't tell anyone IRL.  They were there to help pick up the pieces when things went bad.  They've been there for every hospital stay, doctors visit, sickness, and frustration I've had along this road with Madeleine.  I'm not sure I could find 2 more wonderful women to call my very close friends.  And I don't think it's a coincidence that we were put into each other's lives.  We've needed each other many times over the last 3+ years.  We've given advice, support, love, everything.

Second, I met someone.  I wasn't looking for a relationship.  Heck, at this point my divorce wasn't even close to being final and certainly looked as if it would drag on for the foreseeable future.  But sometimes, someone else has ideas for the road your life should take.  And I have to thank my grandpa for meeting this man.  But for grandpa being sick and falling, he would have never been placed in my life.  He is an amazing man that so far has won over all the friends and family he has met despite the circumstances.  I'm truly lucky to have him in my life, and I'm quite looking forward to what the future holds.

In October, we went to James & Colleen's wedding.  It was a wonderful even and I'm so glad we were able to celebrate it with them.  I was able to see a lot of friends and "family" from college.  And I *finally* got to meet Miss. Brooke.  Her and Blake are just too cute and I love them like my own daughter.

And here we are in November.  A full year removed from the last time I posted.  A lot has happened, even more than I'm going to write there.  But, life is so incredibly different.  Different in an absolutely wonderful way.  I am happy.  Madeleine is happy.  We have a whole new life open ahead of us and the possibilities are endless.

Sometime in December, Madeleine and I will be moving back into our house.  I'm feeling bittersweet about this move.  It will be so nice to get back to a new "normal," but I will also miss my mom a lot.  Madeleine will miss her dearly.  It will be weird for a while having it be just the 2 of us.  But, it will be good.

And, some of the best news of all?  Madeleine is doing WONDERFULLY!!!!  She finally began to put on some weight and this summer made it all the was to 3rd percentile on the growth chart!  WOO HOOO!!!!  She's been healthy since we began her airway clearance system in January.  Yes, you read that right.  Healthy!  NO RESPIRATORY INFECTIONS!!!!  AAAAND, in October she had a clear swallow study.  How?  I have no idea as all the doctors told us she'd hopefully grow out of this around 5 years old.  So, in October we stopped thickening her milk and Pediasure.  Water is still being thickened until we meet with pulmonology in December.  It's been a long and arduous 3 years healthwise for M, but it looks like we finally turned a corner sometime this summer and are on the road to a completely healthy 3 year old.  Yes, 3 year old...in 10 days she will be 3.  Where has the time gone???  And since there hasn't been one posted in some time...here's M:

I haven't yet decided if I'm going to maintain this blog, create a new one, or just be done blogging all together. I'll mull it over for a while and then decide.

So, there it is.  The last year in a nutshell!  Love you all!

Update on M!

So, we found out that M is aspirating on everything she drinks when she had a swallow study done at the beginning of October.  There are 3 types of liquid they test - nectar, nectar minus & thin.  She aspirated on the nectar minus (i.e. milk consistency) and thin (i.e. water consistency).  So, we've been thickening all of her liquids with SimplyThick since this was discovered.  Thankfully, after a couple weeks on the thickener, her chest finally cleared up for the first time in forever.

But, now we had the new question of WHY is she aspirating on everything?  Off to the ENT we went.  We had an appointment at Mott at the end of October with the ENT.  Based on her history and a nasal scope he did in the office, he determined that he believes she has something called a laryngeal cleft.  He said she'd need a scope under anesthesia because that is the only way to confirm the LC.  He said if the LC was confirmed he could do surgery right then to fix it.  But, there really aren't any odds to guarantee the issue would be fixed.  When I asked if that would correct the problem, he said "maybe."  So, then he suggested that instead of doing surgery right then, they could do a collagen injection to "fill in" the gap.  A month later she'd have another swallow study done to see if it corrected the problem.  If it did, surgery would likely fix the problem permanently.  If it did not correct the problem, then surgery likely wouldn't help.

So, we set up a TBA scope with Mott.  And that night I went home and did some research on laryngeal clefts.  My research showed me that it's a pretty rare congenital abnormality.  It also led me to the expert on LCs in the US, a Dr. Robin Cotton down at Cincinnati Children's Hospital.  His e-mail was listed on the hospital website, so I took a chance and emailed him asking if he'd give us a second opinion.

He emailed me back less than 24 hours later!!  He told me that he'd be more than happy to give us a second opinion, but he would need a video of the scope after it was done at Mott.  He also told me there has been a rash of LCs being diagnosed in children who are anatomically normal.

This concerned me.  So, I decided that we wouldn't do anything to M until after he weighed in with a second opinion.

The following day, I got a call from Dr. Cotton's nurse.  Apparently, Dr. Cotton had decided that he wanted M's case to be presented to the Aerodigestive Team down in Cincinnati on November 6th.  I almost fell out of my chair.  Finally, we might get some answers for M...from a whole team of doctors in ONE ROOM together.  Discussing her.  Mind blown.  Amazing.  Absolutely amazing.  But, I had to wait to find out if they were going to accept her case.  I was a bundle of nerves all day on the 5th in anticipation.  All day on the 6th hoping I'd get a call.  And finally by lunch time on the 7th, I just couldn't take it anymore and I called them.

The nurse called me back on Thursday and told me that YES, M's case had been accepted and they had an initial plan in place based on the teams discussion.  We'll be going down to Cincinnati for 3-5 days.  3 days for sure, 5 days depending on what they find during her testing.  This is what will occur:

Day 1 (Tuesday)

• High Resolution Chest CT
• Video Swallow Study
• Anesthesia Consult
• Meet at shared clinic with the doctors to examine M, answers questions and receive the results of the Chest CT.  An MRI of M's brain may be ordered based on the physical exam.

Day 2 (Wednesday)

• Triplescope.  This is a laryngoscopy, bronchoscopy & endoscopy all at the same time.  The laryngoscopy will be what confirms the LC.  The bronchoscopy will look at her lung structure and take lung washings to look for aspiration (and what is being aspirated).  The encoscopy will look at her digestive system to determine if there is reflux or other issues.  If she has reflux and it is uncontrolled, it will destroy an LC repair if one is done.  
• pH probe.  This will be placed during the scope.  It's a probe to test the pH in her digestive system (for reflux).  This tube will be inserted through her nose and will have to remain in place after she wakes up.  
• Meeting in consultation room with whole team to discuss findings.
• PICU admission.  She will be admitted to the PICU for at least 1 day for observation and to keep the pH probe in place.

Day 3 (Thursday)

• FEES Study.  A camera will be put in her nose and she will be asked to eat and drink.  The camera will watch her swallowing from above the level of the vocal cords.

Days 4-5 (Friday - Monday) will be possible based on how she recovers from the scope and what is found during the testing.

The doctors will then meet again the follow Wednesday (Day 9) and discuss her final plan.  I will received a call that Thursday or Friday with the final plan.

Right now we are waiting for a call from the scheduling department at Cincinnati Children's.  The plan was sent to scheduling where they have to get a pre-certification from my insurance.  Then they will find open spots in the schedule and then call me to "negotiate" dates.

My hope is that this can be done before the end of the year, otherwise we may be delayed with another insurance pre-certification because my insurance will be changing 1/1 (thanks ACA :/ )  The nurse said that scheduling could be anywhere from "next week to a few months."  

So, right now we're just waiting to hear from scheduling.  I am beyond relieved that they've accepted her case.  I really feel like this is a step in the right direction and we might finally be able to get some answers and keep this kid's lungs healthy!  

First Time Trick or Treating!

M insisted on wearing her cat shirt today.  Like she has every day for like 2 weeks.  I might have to hide it after today because I'm sick of washing it.

Halloween Morning!

It rained ALL day today.  I'm not even kidding.  It started at 10 o'clock last night and is STILL raining at right now (9:00 pm) and there hasn't been a SINGLE SOLITARY break in the rain.  After work, I picked up M and we headed over to grandma & grandpa's house to go trick or treating and pass out candy!  And since Maddie's most favoritest character EVER is Minnie, that's who she dressed up as and was QUITE excited when her costume came a couple weeks ago.  So, Miss M was angry I didn't let her put her costume before dinner, so was a pouty pants when she finally did get to put it on.

Uncle Eddie and Aunt Ashley coaxed some smiles out of her with a Snickers as a bribe.

Then it was time for her first excursion in trick or treating.  She refused to say trick or treat, but did say thank you to everyone :)  Aunt Ashley came with us and helped her jump over puddles and take pictures!  Thanks Auntie!

I was pretty surprised how many houses she wanted to go to, although toward the end the pumpkin started dragging on the ground and she started lolly gagging :)

We took her back to go thru her candy.  She shared with everyone and ate a ton.  I'm surprised she went to bed tonight!

Grandma got M some skeleton glow glasses and a witch Barbie.  Both were total hits!  I however, failed to get a picture of her witch Barbie...but she's been obsessed with witches for a couple weeks now after seeing one of grandma's witch decorations!

HAPPY HALLOWEEN EVERYONE!  We hope everyone had a wonderful night!

Weekend In Chicago #2

Well, we left off just before getting the kids ready for Blake's party!  While J and I got ready for the day, Louis and Ryan took the kids out to play.  Ryan got some great ones of them jumping around in the leaves!

And fighting over the lawnmower...

And playing with pumpkins...

After the mommies were ready, and the crowd was fed, the kids went down of a nap...and then PARTY TIME!

Katie, Eric & Raegan showed up and we grabbed a picture while the kids were all sitting still (which is good, because our annual group shot did NOT go well).

Blake's grandparents also came and everyone hung out.  Blake absolutely adores his grandpa Unti, so he wanted very little to do with anyone else while he was around, lol.

It took a while, but Raegan finally warmed up to M and they even held hands on the wall.  One of the cutest things of the day!

 Barb was teaching M how to feed a baby with a bottle.  Adorable.

 IWU alum!  I can't believe it's been over 7 years since we graduated!

 Here's the best of the annual photo shoot.  Blake was VERY upset that grandpa Unti was no longer holding him.  I'm pretty sure there isn't a single picture without him crying!

 But all was well with the world when mom put him down and grandpa picked him up!

 Miss Raegan hanging out in the backyard with everyone!

 The kids went on SEVERAL walks and wagon rides...

And Maddie and Blake even did a bit of smoothing (notice Raegan is quite distressed over Blake having another woman).  Barb got the BEST picture of them kissing.  It was so sweet. 

After the kids tired out of playing outside, we came in and ate dinner.  Then it was time for cake and ice cream!  The kids LOVED it!

Then Blake opened his presents.  Things went well for the first present and then M was QUITE upset she wasn't also opening the presents and playing with all the new toys!

The kids were all tuckered out by the end of the day and went to bed easily from all the fun!

The next morning, M wanted to dance some more to the 50's Dance Mix that Barb bought for Blake

We got the kids ready, and went outside one more time to play before we had lunch and then the Ramsayers had to head home to Michigan.

 Bye Bye Chicago!  When we see you next time, there will be another Malic Baby!!!

It was so great to see everyone!  We already miss everyone!  And M has been wanting to see pictures of Blake since we got back.  We've had to look through them all so M can point out who everyone is.