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C88D4A84-4A26-4100-807E-6BE7EA07A8C9FDBFE4B7-B620-4E31-B722-A938B5F6989A75CA158D-2651-4EF8-B52F-3CE171A099E185F79223-AF7F-4068-AE05-1A0B4FD41F97First , Jack was officially released his IEP for speech therapy at school! Surprisingly he was a little sad about this as he has loved all his speech teachers (and who wouldn’t want prizes and affirmation every single week of your life—right?) His current SLP was sad to see him go too!

Now Jack’s cleft journey will take its next step this week!

The “gum line repair” on Jack’s surgery timeline seemed forever away when looking at his timeline as a baby. But, here we are in the eve of his surgery day! While his face was repaired at 7 months and palate reconstructed at 14 months, we had to wait to repair his gum line, which is still in 3 pieces, until his adult teeth were ready . So now, at 9 years old, he is a go for the graft!

After some research, interviewing, asking all the people all the questions, and praying, Jack has a surgeon ready to take his care into the next phase. Monday afternoon Jack will have bone harvested from his left hip (we’re not taking chances with that right kicker leg-ha!). His doc will pack this bone into the two spaces in his gum line/nasal areas that are still bilaterally clefted. This will allow his gum line to be smooth, healthy, and ready for adult teeth to thrive in.

Jack’s amazing orthodontic care has prepped his gum line for success! Ortho made the front of his gum line more u-shaped versus a-shaped, so that the bones will be more likely to graft successfully. For the clefties in this journey too—this phase 1 of ortho involved a little less than a year of upper braces and palate expander for 3 – 4 months. Headgear is helping correct his underbite. Braces stay on during surgery!

We will know if the surgery was successful with X-rays in a few (long!) months. In the meantime, Jack will rock the liquid diet and avoid soccer and tetherball (current passion and class champ) for about 6-8 weeks. We are prepped and ready (thanks Costco!)!! I’m hoping warm blended soup, chocolate milk, and soft styrofoam cups will ease some of his discomfort early on.

As always we so appreciate the prayer and support from our community! Specifically we’re praying for our surgeon to be able to graft both clefts in one surgery and for Jack to be healthy, calm, and safe. Thank you for caring about our Jackie boy!

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As any mother does on her kid’s birthday, my mind is reflecting on the now four years we’ve had with Jack.  Of course I can’t believe how BIG he is and that he can now do big boy stuff like ride his bike, say his letters, and aim his pee mostly into the toilet water.  However, my thoughts have also turned introspectively, and thus I’ve felt compelled to blog transparently about the very beginning with Jack.

So…

Jack was desperately wanted from the conception. He followed our miscarried baby, and our hearts were oh so excited once we knew we were pregnant again. We anxiously awaited passing that 12 week mark and then the ultrasound to find out the sex of our precious bundle.

When our world tilted...
4.5 years ago, chasing the heels of the announcement of “Its a boy!” I heard the word cleft for the first time {outside of a Smile Train commercial}. A small word that turned my safe world upside down. A few days later, a specialty clinic confirmed Jack’s bilateral cleft.

The next statement I recall hearing was “We have to first give you the option of  termination.” This was Emanuel’s first option for my very alive and active 24 week old baby inside my body that we had just intimately viewed in 3D.

I was stunned. My mouth said the right answer, “Absolutely not.” {I thought, I AM a pro-lifer, I believe in life!} But I felt my dry throat tighten and mind flash to the possibility of not having to face this. I have admitted this to very few, but feel compelled to share this today. {Also after the termination suggestion, we were then peppered by a geneticist with questions like, “Sooooo, are you guys related?I know we look a bit alike, but come on! Really???}

After that day, I grieved the loss of not having the”perfect” baby. I hurt deeply and privately. I cried much. These things I hate to even say now, because I love Jack so desperately. As the birth of Jack came closer, I came to terms with the cleft. We educated ourselves and prepared the best we could. To regain a sense of normalcy  I had maternity pics taken and shopped boutiques for his coming home outfit. {I couldn’t decide, so he had 2} We welcomed him with open arms; the minute he was placed on me… well, the rest is history. LOVE.

My heart today is for the  young mom who has stumbled onto our page, for the family who just heard the word cleft for the first time and is googling bilateral cleft, OHSU, Dr Kuang, Dr Garfinkle, NAM, or Doernbecher, and just in case there is even one woman sitting at the crossroad where I sat not long ago. Know this: your baby is a precious, important, and valuable person. You will grieve, and you will face challenges, but life is worth that. While my heart aches for all that our little guy will still face, more than that, my heart overflows with gratitude that I get to be Jack’s mama.  Choose life!

Happy birthday to sweet Jack and his BiG smile!

{Guess what he’s getting? The updated bat cave-to those who know him well, this may seem redundant, but we’re pretty sure he’ll love it!}

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