Tuesday, August 2, 2011

How Much More?

Thanks to you who have asked about how Dennis is doing. He is one amazing boy with an uncrushable spirit. He is a bright light in this world and what a special blessing it is to see how he touches the lives of those that he meets.

Here is a picture of Dennis today. His lower eyelid skin graft is healing quite well. Today we had a consultation with the Cranio Facial MD that decides what specialists Dennis will see when he comes to the clinic. The doctor immediately took a liking to Dennis as did Dennis to him.

I learned a lot about my little boy today. Dennis is no longer afraid of doctors. He doesn't cry when something unknown is going to happen--- he just asks lots of questions. That's how he steals the hearts of those he meets.
"What's that?"
"Can I push that button?"
"How tall am I?"
"I am almost taller than you."
"I like your picture card. Can I have it?"

Anyway-- Dennis is 36 1/2 pounds and is nearly 42 inches tall! He is pretty much on target developmentally for his age too!

As the doctor thoroughly examined Dennis and listened to all of my concerns I felt like the visit was wrapping up. Then the doctor's demeanor changed a bit when he asked me if I knew that Dennis had scoliosis. Just like that-- all the puzzles were finally fitting together. I have to admit, I was crushed to hear this about my little boy. Dennis with Torticollis and Poland's Syndrome on his right side-- it makes sense that his spine might be curving that way too. But I didn't want to believe it at first-- why had no other doctor noticed it before? Why hadn't I noticed it? The doctor showed me how Dennis' spine is indeed curving to the right-- x-rays will give a better answer as to the cause and degree of his scoliosis.

This means additional referrals to an orthopedic surgeon and physical therapist. As I took in all of this new info, my heart ached for my son. It is just not fair.

Lord, I trust you have a plan though it makes no sense to me right now. Help me to remember that though I don't understand, your love for each and every one of us is greater than I can imagine. I pray that you give Dennis strength and determination to climb every mountain before him and that I am right there by his side... always. Thank you thank you thank you for choosing me to be his Mommy.

12 comments:

  1. Hi Dennis is so cute . He is very blessed to have you as a parent. Adopting special needs children is very time consuming due to all the medical care these children need and very expensive due to the cost of their medical care.Blessing.Pat

    ReplyDelete
  2. Christine, My daughter who is 18 mos old and has torticollis. She has had it since birth and although she spent the last 16 mos in physical therapy she still has a slight tilt. Her PT said that watching for scoliosis is something that we need to be aware of for the rest of her life... so the scoliosis could simoply be caused from his torticollis and nothing else.

    ReplyDelete
  3. Amen Christine. His eye looks WONDERFUL!!!! WOW!!!! Dennis is one amazing little boy!

    ReplyDelete
  4. Christine, what I say now I say from the bottom of my heart:

    pray starting now & never ceasing that Dennis will EMBRACE these challenges.

    why?

    because my parents did that for me, and now I am BEYOND THANKFUL for the problems I've had. i faced 11 years of abuse, DAILY migraines (actual migraines, not headaches) most of my life, 4 brain surgeries in the past 2 years, i have a shunt... i am in excruciating pain almost EVERY SINGLE DAY OF MY LIFE.

    and yet without those things, i wouldn't know God NEARLY as well. i wouldn't have a platform from which to speak to others & testify of God's goodness and sovereignty.

    in short, without these challenges, i wouldn't feel nearly as blessed as i do.

    and Dennis can feel the exact same way!

    that doesn't mean you never struggle, doesn't mean that those problems aren't there, and it DEFINITELY doesn't mean you don't have the day-to-day obstacles to overcome that are associated with your particular problems.

    it means that you embrace them & realize one key truth: GOD CHOSE ME.

    just like God chose Dennis.

    i'll be praying that Dennis is able to see this from an early age and will be a light to others all his life... and that God will ease his suffering along the way. ;-)

    - michelle

    ReplyDelete
  5. No, it doesn't seem fair. :( If Dennis is diagnosed with scoliosis and the doctor recommends fitting him for a brace, see if they'll let him wear one only at night. My daughter was faced with haivng to wear one for 23 hours a day! She was in junior high then. Thankfully, a friend recommended THE scoliosis specialist and he said 12 hours a day~ that children do over 80% of their growing during their nighttime sleeping. Shelbi also suffered with Selective Mutism (an anxiety disorder), so I was reluctant to send her to school wearing a brace over her clothes. One more thing a defenseless child could have been picked on about. I'm thankful that she didn't have to do that. She wore hers for about 20 months and the curve never progressed enough for her to need surgery. God is good!
    Dennis' story is inspiring! He is a very brave little boy and is touching lives. :)

    ReplyDelete
  6. Oh my, He never catches a break! I'm sorry for this new addition to the list of challenges he has to deal with! I embrace you both you are always in my thoughts!

    ReplyDelete
  7. Oh how I know this feeling! Angela has had 23 (24? 25? I forget now!) major surgeries. Axel, home 7 1/2 months, has had 3. Fortunately as far as we can tell there will be two more (both minor) and he's done. The other child we're hoping to get will have years of craniofacial stuff. It is tough to watch your kids go through this stuff!

    ReplyDelete
  8. Imagine my surprise when I read your little man has Poland's and a Torticolis neck. I was born with a Torticolis neck and my sweet 14 yo daughter has Poland's on her left side. All the time I have been sneaking a read of your blog, I never noticed little man with Poland's. He is such a cute little guy!!

    ReplyDelete
  9. He's growing so fast and has changed so much since you first brought him home. What a sweetheart.

    It is SO hard to hear about further problems with your child when you thought you already knew what was going on and how to deal with it. With Dorian's last emergency surgery, we found out that he has yet another intestinal disease that could require many more surgeries in the future and it nearly broke our hearts. HOWEVER, I do find that kids who face extra challenges tend to be amazing. They are stronger and more confident in themselves. They learn about their conditions and they take charge (if we allow them to) of some of their own areas of care. I'm continuously stunned by how much Dorian understands about his issues and why he has to have surgeries. He is to the point where, at 5 years old, he will turn down candy or sweets or bread and politely tell the giver that he appreciates the gesture, but that stuff will make him ill. He makes sure he takes his meds and he is constantly asking questions, just like your Dennis, always trying to learn more about how his body works and how it is different from other people's.

    And, to make a very long comment even longer, I think your attitude is super important. Let Dennis know that you think he's brave and strong and wonderful and point out how the surgeries help him and he'll be positive about the whole thing, too. It's not fair, but that doesn't mean he has to feel sorry for himself, he's a great kid!

    ReplyDelete
  10. Dennis is one beautiful little boy. And you are a beautiful mommy. :)

    ReplyDelete
  11. The best way to bit scoliosis is CLAVITHERAPY. I had it and it works. Without surger. Look at the pictures:
    http://www.fundacjagaja.pl/index.php?option=com_content&view=article&id=14&Itemid=33&lang=pl
    Hope there are some specialist in clavitherapy in Your country.
    Hugs

    ReplyDelete
  12. WOW! His eye looks great! He has grown up so much since your brought him home. :)

    Scoliosis gives you opportunity to meet and touch yet another set of Dr's. lives. :)
    We have several friend's who's little ones are in braces for scoliosis. The orthotics dept. also handles the scoliosis braces. A really good friend of mine just found out her son has scoliosis and he has had no other issues. He is 13 and she is rattled by the news. I am so glad they can do something about it!
    God will give you the grace to go through yet another trial.
    I'm talking to myself too, as we have another body cast situation coming up soon. ugh.

    ReplyDelete

I find your comments so inspiring! Thanks for visiting our family blog, and sharing your thoughts.