Maddox just turned FOUR months and we have a few updates!

I'm going to start with the fun stuff because I want to!

 

Here are some pictures of my little guy that make me oh, so PROUD!!!

 

 

Deep in thought in his FANCY Easter clothes!

 

"Chicks Dig Scars"

 

Enjoying the outdoors and showing off his sitting up skills at ALMOST FOUR months!!!

 

"Mom, I really DO like it out here!"

 

"I rock four months like no other!"

 

 

Now, onto some medical updates...

Maddox had an appointment at the Spina Bifida clinic at Yale on April 12.  Those appointments are always a little rough on Kelly because they are LONG and the doctors do not sugarcoat anything.  In turn, they are also hard to hear/read about.  Kelly said, they are now referring to our baby as a paraplegic.  I know most of you are thinking isn't that what paralyzed from the waist down means anyway?!?  I think for us, I know for myself, words break my heart.  Especially when it comes to such a sensitive topic like my little guy.  I had a hard time with disability and still don't think I want to use that.  Paralyzed straight up BROKE my heart, and it's kind of like paraplegic is stepping it up a notch when it comes to worse words to use when describing someone and in turn those words just HURT.  Then they reiterate that he will never walk or have any movement or function, etc.  It's hurtful and depressing although we all know.  But, we still do NOT lose HOPE and NEVER WILL!  Then, they talk about getting splints on Maddox  to straighten his legs SOON, standers that will keep him in a standing position by 9 months so that his muscles, tissues and bones do not become weak and fragile in the future so that maybe he can use assistive devices.  I TRIED to hang on to this!  If they're doing things like this, sounds to me like they are preparing his body to be able to WALK one day with assistive devices!  I believe he will regardless of all the depressing stuff they say.  They also said that he would probably get his first wheelchair by the time he is 12 months!!!  Kelly and I went back and forth through text with the info, I asked how she felt, told her what I took from it and how I felt and I asked about the rest of Maddox's day.  I tried to take all of this news and pull from it that Maddox WILL walk one day with the use of assistive devices.  But, eventually my heart overtook my mind and I had my little meltdown over stupid words.  I cried about the words used in reference to my nephew.  Again, I know what his future may and/or probably hold, but words do hurt.  That rhyme we said in school about sticks and stones can break my bones, but words can never hurt me is NOT true (but, I won't tell Mack...I don't even know if they say that anymore...maybe I should bring it back!).  Anyway, on the rare occasion, no matter how strong and tough you are, words can hurt.  I told Kelly words are so heartbreaking, but nothing about Maddox is...he's perfect!  Then, I was left pondering again why I cry and this time I thought maybe it's because I NEVER want Maddox to be sad.  I know Maddox will never know any different and I know he is surrounded by LOVE and SMILES and FAMILY, but when he is older, I never want him to be sad about the situation he is in or feel sorry for himself because that would REALLY break my heart...maybe that's why I cry...or maybe it's one of the reasons.  When I write, I relive my feelings, so it's hard writing weeks and sometimes months later because I get upset all over again, then I think of how strong my brother and Kelly are!  I think of them everyday and how perfect they were for Maddox!  As I'm thinking of it NOW, I had to share it while the thought iwas passing!  I'm also constantly thankful that Kelly is someone that I am able to count as a friend and part of my family!  I can't imagine if I couldn't just text her anytime I wanted with a question or a story and if I didn't get a random texts with a pictures!  As an aunt that lives far away, I've got it good!  :-)

On April 15, Maddox and Kelly went back up to Yale for an appointment with Genetics to follow up with his chromosomal defect - the deletion of part of chromosome number 2.  They now believe that because of his cleft palette, two different colors in each eyes, deformation in his skull, the hydrocephalus he had, the wide space between his eyes, and his kidney problems that he may have Wahlberg's Syndrome as well.  The things I just listed are common symptoms.  Again, it is something that is so rare that they do not yet know what this could mean for Maddox's future.  They will just monitor him as he grows.  They did say, however, that Maddox was doing EXTREMELY well and that they are VERY happy that he is hitting his developmental milestones!!!  I chose to cheer on the last sentence mostly in response when Kelly shared the news because I am so PROUD of my guy and his AMAZING parents and how much they work with him so that he can be the smarty pants that he is!!!  They are also testing Kelly and Brandon to make sure for future children that this isn't a gene they carry, they said it's 99% likely that they do not carry it.  Kelly also said that she had "googled" Wahlberg's Syndrome and in some cases there can be severe intellectual disabilities, but so far that doesn't seem to be an issue for Maddox.  I admitted that I was afraid to google and that I HAD thought about it, but didn't do it.  Kelly admitted that googling was pretty scary and to remember that there were different degrees to how it can affect someone and that Maddox may only have some symptoms and not others.  I decided to stick with what I've done most of the time and learn through and with Kelly and Maddox and stay away from google so that I didn't get myself worked up about something that may never be an issue for Maddox. 

Then, yesterday, April 22nd Kelly and Maddox headed back to Yale yet again.  Yale loves them this month.  Yesterday's appointment was to have Maddox's kidneys checked..  he had an ultrasound done and there is still some fluid on his kidneys, but it does not seem to be getting worse.  They will continue to monitor that for now.

 

 

After all those appointments and all that updating, Maddox is a very sleepy boy!



 

 



Where I (Aunt Meisha) am Today...

I just returned from a little vacation and I stopped and visited two of my sweetest best friends on the way to my vacation destination.  When I visited each of them, Kristine and Katie, one of the first topics of conversations was Maddox.  Let me explain a little...we are the type of friends who don't have to speak everyday, but when we are together we are as comfortable as people can be and pick up on whatever is going on in our lives.  Kristine has a 4 year old little girl and is pregnant with her next little girl and Katie has a 2 year old little boy and just had a baby girl.  I went to SEE them and CATCH up on them and their kiddos. 

I stayed one night with each friend, Kristine being first, for Maddox to be an early topic of conversation with each FRIEND meant the WORLD to me!  Although they both knew bits and pieces, we basically started at the beginning each time and paused when they had questions.  It always led up to if he had any movement in his legs.  I said no, he doesn't he is paralyzed from the waist down.  I probably said it rather bluntly.  Using the word paralyzed is new for me.  I had seen it being used more frequently in Kelly's posts on Facebook and maybe in the email she sent me and the doctors use it.  After I said the word paralyzed so bluntly and got "THE LOOK" from each FRIEND, "the look" is a combination of sorrow, pain, shock, many things, general not knowing what to say or do next...I explained that previously I'd always said that at this point he hadn't had any movement from the waist down so far.  When I heard/read the word paralyzed, I had a good, hard meltdown...the WORD hit me hard in my heart, it physically hurt my heart, the word paralyzed sounds so permanent and confining.  I have no problem with the fact that my nephew will probably be in a wheelchair, but I still hold out hope that he will not need it all the time and will not be confined to it, we all still hold out hope that he will walk one day with any aids he needs...we will NEVER let go of HOPE, so the word paralyzed, kind of like the word disability wasn't a word I'd been using YET or ready to face.  Once I accepted the word (I think), I started using the word more freely and probably giving other people a very tiny percentage of the feeling and shock I felt when I had my meltdown, I'd say less than a 5% reaction to what I had.  I took it hard. 

What NO ONE understands and why I think any of this is a big deal anyway is how this wasn't found before Maddox was delivered.  The Spina Bifida itself isn't a big deal to any of us, I guess it was the SURPRISE and we are still processing and learning about it, I suppose.  Kristine was explaining her prenatal care as she had some high risk issues with both pregnancies, I was fortunate enough to be there for an ultrasound during her first pregnancy with Zoey!  The things she was explaining either didn't exist when I was pregnant OVER ten years ago, weren't available where I was, or weren't routine in normal pregnancies.  I know it's been a while, but I will always claim to be knowledgeable when it comes to pregnancy and babies and my friend was using terms I had never heard of as far as what she made it sound like was normal prenatal care.  Hmmm.  Well, the next day, I'd be speaking with a recent preggo who only lived about 30 miles away so if it came up, I could compare notes on what is and isn't normal prenatal care, I suppose.

When I got to Katie's and the topic of babies in general came up...her recent delivery, how Kristine is doing, how my Maddox is doing, I learned that for a lack of a better way to put it, that after Maddox was born since Katie was already far along in her pregnancy, she started to do interrogation sessions at her prenatal appoinments as to how Spina Bifida could've gone undetected.  I laughed a little knowing Katie and picturing this, then I took it to heart that Katie who'd never met them did something that meant a lot to me.  The overall gist that I got was that the South tends to have more high tech prenatal equipment than the North, which surprised me, but I believed it because of the equipment I'd seen at work at Kristine's appointments.  Maddox being at Yale up North was one thing, but as far as prenatal care, my friends weren't going to any SPECIAL care, this was just the care they received.  Detailed anatomy of the baby down to knowing how many veins and arteries there are in the umbilical cord?!?!  That seemed CRAZY to me, but again, it'd been over TEN years for ME! 

So, I am at a place of not understanding how you can see something that sounds as small as veins and arteries, but not something as big as a hole in a baby's back?  I'm glad for my babies that I love not born yet that technology develops all the time and hopefully anything that needs detected can and will be, I will never understand how Maddox's Spina Bifida wasn't detected.  Although detecting it wouldn't have changed things, I just won't understand.  Actually, "the look" I get when people hear his story and realize this went undetected is VERY similar to "the look" I'm getting when I bluntly say that he is paralyzed from the waist down.  Although, I go through a range of emotions and feelings in the journey I've been on since that beautiful boy was born, one emotion and feeling that has never changed is my unconditional love for him, maybe it changes because I think it grows with him!  I still cry on occasion when I get deep into the story or thought or there's a new term, but I'm never sure why.  I refuse to feel bad for Maddox.  He has a great life with great parents and I don't ever want him to be someone people feel bad for, so I'm not sure why I cry, but sometimes I still do.  Maybe out of my deep love and concern for him and his future and my desire to always be a caretaker and protector of those that I love.