Sunday, January 23, 2011

watch out world, here she comes!

Adeline had a follow up appointment with Dr. Puccioni's office on Monday.  His P.A., Kristin, saw her.  Everything continues to look good.  She is neurologically perfect. It seems that since the surgery, whenever we speak to the doctors, the severity and risks of craniosynostosis and the cranial vault remodeling surgery increase.  It is definitely better that I was clueless about most of it before.  I can’t imagine how sick and worried I would have been.  Kristin explained how large and delicate the sagittal sinus (the main blood vessel that drains blood from the brain) is and how easily it can be nicked or cut open during the removal of the skull.  And it’s not good when that happens.  But Adeline’s surgery went smoothly -so there was no need for worry.  If Adeline does have to have another surgery to repair the front part of her skull, the blood vessels there aren’t as large and delicate, so the risks aren’t as great. 
I’ve also learned that no one is certain what causes craniosynostosis.  Many think the brain sends signals to the skull via the dura mater (a thick membrane that covers the brain and spinal cord) that tells the skull to continue to grow or to stop growing. For some reason, Adeline’s dura mater told the sagittal suture the brain was done growing in that direction - so the suture fused.  We just have to hope and pray that the skull and brain grow normally now since the fused suture has been removed and the skull is remodeled to accommodate growth.  We will travel back to Omaha a couple of times in April for 3 month follow ups with Dr. Miller and Dr. Puccioni. I’m just going to try to take it one appointment at a time and not worry about what could be next.

Adeline received a beautiful headband from "Avery's Angels".
Avery’s Angel Network is a charitable program providing handmade flower headbands for baby girls with craniosyostosis. The headband helps cover the ear-to-ear scar left from surgery and gives them some pampering during their time of healing. This program also hopes to promote awareness (and acceptance) of Craniosynostosis because early diagnosis is crucial to providing adequate treatment.  I feel so proud and blessed to see Adeline in her headband.  Avery's Angels is a gift itself. I will send them a summary of Adeline's story so she can officially become one of "Avery's Angels".

Grayma (Matthes) spent the week with us, and Graypa visited a lot.  Adeline's last week of staying home.  I'm not sure who enjoyed it more...Adeline or Nile or Grayma.  Grayma's assignment for the week was to de-spoil the princess.  She goes back to daycare tomorrow, and she needs to fit in with the other kids again. And I don't want Jo Jo shipping her home in a box. So Grayma spent the week at a 3 foot distance from Adeline.  No kissing, no cuddling, no rocking or dancing.  Something tells me that Grayma cheated a little, but Adeline does seem to be a little more independent again, and Grayma was actually able to clean the house up a little.  Adeline is now sleeping well during the night and taking (short) naps throughout the day.  She will play on her back - after a little crying and pleading to be picked up - but now I think the crying is more to do with being spoiled than with pain.  She grabs for everything - she's pretty intense - when she wants something she goes for it! And the grandmas have fattened her back up!  I will never be able to repay them for their help and love these past few weeks, but I hope that knowing their hours of  nurturing the way only a grandma can will always be a very special part of Adeline's life.
She is so happy. And so lovey. And so LOUD! I am embarrassed to admit that when I do take her out it is easier to put a hat on or hood up just in case someone would give a look or say something that would hurt my feelings.  But mommy better forget trying not to draw attention to ourselves.  She rips the hats off and "sings" at the top of her lungs, she wants the world to know she's doing GREAT.  

Our lives have been changed by craniosynostosis. Although its been rough, we've all survived and are (happily) thriving. After Adeline is finished growing and her brain and skull have developed completely, we will be done. Although I do not like leaving my kids to go to work in the morning, I am so grateful I can leave them. I'm not waiting in the hospital as my baby endures a round of chemotherapy or at home taking care of a sick child because no one else can or wants to handle it.  We can pretty much go on with our lives.
Since life is supposed to be made up of challenges to overcome I probably have quite a few more ahead of me to conquer. Crap. That's scary. Its like, we've hot this nailed, what on earth is next, and how is God going to present the tools needed to handle that. Am I going to have the strength?  What if one of my kids gets cancer. I couldn't survive that. I have always had a (normal) back-burner fear of childhood illness and now I have had a taste of it. And I'm left with a deeper fear of what could happen.
When Nile was a newborn and I was a first-time parent of a baby with colic I thought, " if parents really told other perspective parents what taking care of a newborn was really like (and they were able to comprehend) no one would have kids".  But you get through it and you love that baby sooooo much more than you could have ever imagined.  And it's all worth it.
If I let my mind have its way, even everyday tasks and responsibilities can become a little more intimidating. I am more sensitive to losing control of the easy stuff. I just need to lasso up my thoughts and focus on the gifts and rewards instead.  God has a plan.

Aaron and I are blessed to want to support each other throughout any situation. We make a pretty good team.  We have been able to find humor in almost every circumstance, and if no humor can be found, we can hold each other tight and storm through.

Maybe that's why God gives us so many distractions. Nile's innocence warms my heart.  His insight into the life of a four year-old boy amazes me every day. And the funny things he does and says are the perfect fuel to keep us all moving forward.
Since the light sabers have been put up in the garage "for a really long time now! Geesh!" Nile can make a light saber out of pretty much anything.  (The best part is watching him try to keep them in his holster - i.e. waist band.  I promise all cooking utensils are sanitized in the dish washer after a duel.)  And his advise on how I can beat him in a light saber fight is almost tempting enough to accept his challenges ("Mom, you [do this or say this], and then I'll [do this]."  He has it all planned out.)  But Aaron is getting a little annoyed with getting randomly poked with various household objects.
I can judge how long I haven't payed attention to Nile by the number of wardrobe changes he's had. Football uniform to basketball uniform to cowboy to football/basketball mix...with cowboy boots of course.  And then the 3 different pairs of pajamas.  All mixed and matched.  His room looks like a teenager's.
And whenever he gets in trouble, he always finds a way to convince us that it was a learning experience for him, "Mom, I am really sorry.  It was my fault, but I didn't mean to do it.  And I know that I won't ever do it again now." and "Making myself camouflaged with markers does give me a rash! I promise I won't do it next time."

I just can't imagine the team that Nile and Adeline will make together.

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