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The Journal:  Weird to wonderful, silly to serious; Life.

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All I want for Christmas is...

12/6/2012

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For a few months, we’ve been wondering where Maverick’s teeth are. One gorgeous incisor budded in his premaxilla in late August this year (a follow up to the two bottom teeth that erupted in June), and that one has continued to grow into a full-size biter! But since that one emerged, the others seemed elusive.

I somewhat took it for granted that the one incisor may very well be the only front tooth we were blessed with on top… because of the missing bone areas on either side of the premaxilla in bi-lateral clefts, front teeth, like the lateral insisors, cuspids, and canines, are hit-or-miss. I decided not too worry too much over it, since Maverick’s teeth would all have to be overhauled in the future anyways. 


     Then, my mother-in-law, who was caring for Maverick one week before Thanksgiving, mentioned that she saw something strange in his mouth and wasn’t sure what it was. I looked and saw something, too – a tiny white speck. But I thought it might have been a piece of chicken or food of some sort that had gotten lodged into his new palate. Perhaps it was even a little sore spot from having chewed on every toy in the house, as he was prone to do (now that the no-no arm bands have disappeared for good!). It was too hard to get a good look withMaverick being so wormy. So, after washing my hands, I stuck my finger into his mouth to see if I could get whatever it was. The realization hit me as soon as I felt it-- bony, hard, and very much attached. Teeth. Two of them, side by side, slightly overlapping and growing backwards – right in the middle of the roof of his mouth, just behind his premaxilla. 
    At first, I was concerned – as I am sure any parent would be. But then I realized that Maverick’s “challenging” anatomy was going to come with some odd dentition. Even though we never had ANY expectations of having normal teeth, I was a still a little shocked at the twisted appearance and the placement of these two. We made an appointment with Dell to have our new additions checked out. My biggest concern was whether they needed to be removed. 
    Dr. Jacobs, our beautiful, young new dentist (not to be confused with Dr. DaSilviera, who is our orthodontist) took a good look at Maverick’s teeth for us. She expressed that the best things to do was let them grow and see what they did. If they started to cause sores on his tongue, then we could discuss removing them – but for now, they’re just teeth. Our biggest concern should be keeping them clean. Due to their odd orientation, foods get easily stuck between them and the palate. She also pointed out the barely-there tips of his first premolars, budding simultaneously on either side of his jaw, somewhat to the inside of where you would expect them to be. This is possibly the effect of a “bunching”of the teeth within the jaw-line – it’s common for cleft kids to have crowding of the back teeth due to a shortened upper jaw line. Dr. Jacobs left us with a few suggestions for toothbrushes and how to get the teeth clean.
    Then, Dr. Harshbarger visited us, and confirmed that even though the placement of the teeth seems odd to us, per Maverick’s anatomy, they’re actually in the right spot. Only time and growth would be able to tell us if we’d be able to use them or not. The future plan involves braces: Once the molars are in place (about 7 years old), we’d have a place to anchor the braces, and we could go into the orthodontic reconstruction of Maverick’s journey.
        That seems so far away from now…

    As our year ends, I can look at Maverick and I can literally see how much we’ve been through. And, though it seems as if it has flown by, I have very clear memories- moments of time standing still. Moments that took my breath away    – his birth, his first smile, his first laugh, his first crawl, step, and more… 
    And moments that I tried so hard to get it back altogether – like the times when I couldn’t get his NAM in, when I had to reapply his tapes 3 or 4 times in a row, when I couldn’t bear to put his no-no’s on, when every meal was coming out of his nose, when his discomfort kept him awake all night...  
    When I had to let him go for surgery, and the first time I saw him in recovery. 
    
    Suddenly, 6 years from now seems like it could be right around the corner. 
    And it makes me want to scoop him up and love on him even more while I still have the chance.


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Happy Birthday Maverick

11/20/2012

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Maverick at Birth.... Maverick at 1 year
Maverick, I hope that one day, you’ll understand what an inspiration you are to me. In one year, you have taught me so much about myself, and you have changed my view of the world. Because of you, I have new definitions for beauty, strength, grace, and resilience. 
        My precious little man Maverick, I know your journey is far from over, but this year, you have shown me that we can do this. You have given me the gifts of purpose and hope, in a time I needed those things most, and I am ever grateful that Heaven has blessed me with you. I love you so much, and I love how your spirit transcends your challenges. 
    Maverick, you are amazing to me, and I am so very proud of you and how far you’ve come. I am blessed beyond measure to have you as my son. On your birthday today, I wish you bravery and good providence as we forge onward.                                           I love you always   ~Mommy


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Booty Up, Tummy Down. Tape, gone.

3/26/2012

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Maverick is starting to roll over on his own.  I lay him down in the crib at night, on his back, only to come in the next morning to find him curled up on his tummy with his cute little booty stuck in the air.   Although “they” say you should have your baby sleep on his/her back, I’m not sure how you enforce this if your baby tends to root around at night… which Maverick obviously does.  I think I’ll stick with my instincts, which tell me that so long as he is comfortable – and I am always amazed that any babies would find this position comfortable – he’s probably okay.  Maverick has done nothing but prove to us that he is a pretty tough little man, so I’m not too worried about his preference to sleep on his tummy. 

That being said, it has presented a new challenge with regards to his cleft reconstruction…  When he roots around on his tummy, he inevitably rubs his face on the sheets… and that means that his bilateral tape is either slipping off, or it is broken by the time I get him up in the morning.  My fear is the possibility that he could get the broken tape pieces in his mouth while he’s sleeping, and that he might choke.  Given that it takes a solvent to actually remove the tape anchors from his cheeks, I have to admit this would be a very rare scenario…  but it’s a possibility none-the-less.  

So, for now, I am making a choice to leave the tape off at night.  We’ve been ultra-diligent so far with his taping – he wears it 24/7 without fail.  I hope that a little break during the night for the next few days isn’t going to affect him too much.  We visit Dell soon and we can discuss some tape options then.  And, we have our lip repair surgery in just 3 weeks - so after that it won’t matter too much any more!  Even though the thought of his first surgery scares me, I think we’ll all be glad to rid ourselves of the tape!

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Welcome, Maverick

11/21/2011

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We have been absolutely blessed.

Mike and I delivered a son into the world on Sunday evening.   11/20/2011 at 7:49 pm.   The delivery was very quick and we had no complications.   Despite being delivered at 37 weeks, our little boy was a very healthy 7 lbs. 4 oz, and he was 19.5 inches long.      

We named him Maverick - for several reasons - but the main one is that we wanted him to grow up to have an independent spirit.  

Happily, Maverick began to defy expectations from the moment he entered the world.  He wouldn't cry at all.  At first, I was unnerved by this - I thought babies were supposed to cry and everyone would see how well their lungs worked!  But not Maverick.  He quietly entered the world, and only whimpered a little as the nurse team assessed him.  Despite my fears, Maverick was breathing very well on his own - his lungs were very clear, and he didn't need a breathing tube!   
It was also determined during his assessment that we had complete bilateral cleft lip and complete bilateral cleft palate.   The lip was very obvious - it's basically in 3 pieces, and he has the "gumdrop" at the tip of his nose.   (his gum and the middle section of his upper lip are attached to the tip of his nose).   The soft and hard palates are cleft on both sides, from front to back, so his sinus cavities are open to his lower jaw. 

 Fortunately, however, Maverick has his nasal bone intact.  Because of this, he was actually able to feed from a Cleft Palate nursing bottle with some great success!   And to our immense relief, he ate and ate and ate!   Because he proved he could do this right away, the doctors saw no reason to place him on a feeding tube.    No NICU for us!!  

Maverick continued to surprise us as we moved to post partum.   He was quiet, calm, and ate without any issues.  His vitals were always perfect and his skin is beautifully rosy.   He quickly gained a fan club of nurses that came to check on him even if he wasn't on their round.   I have to admit that those chubby cheeks are irresistable!  

We were also visited by Mary Breen of the Dell Cleft Team.  She did her own assessment of Maverick's clefting, and showed us a very similar example from a previous Dell cleft patient.   The results were dramatic, and she said that we could probably expect similar results.  Once again, Mike and I were very pleased to know that we were in capable hands. 

We will visit Mary and our orthodontic surgeon on Tuesday for a consult and to get an impression of Maverick's mouth.   This impression will be used to create Maverick's custom NAM device (a retainer-like device that will help bring the interior portions of the palate clefts together, and push out Maverick's nose into a more favorable position for a surgery in a few months.)  We'll also get "taped" at this visit, which is just the beginning of Maverick's nasal and lip reconstruction. 

We're very excited about this visit - it's just the first step in Maverick's cleft journey.


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    I am...

    Rachea.  And I am a recovering Marthaholic.  
    There, I said it.  *sigh*   Years I wasted on perfection & trying to live up to someone else's standards.  Now I live for my own, on my own terms, & in the most unapologetic way possible. 

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