Friday, July 20, 2012

An Update

Alex is home from the hospital.  Yay!  He did great too.  At first he was really excited to go to the hospital. He was disappointed when he asked if he would stay there for 4 nights and I answered that he would only be there for 1.  Why?  He wanted to watch tv and change the channels.  I guess not having cable makes Nickolodeon very attractive.  Still I was a little hurt that he wasn't looking to me for any source of comfort or reassurance about his big surgery.  I gave it to him anyway.

Alex's surgery went great lasting less than two hours.  When it was time for me to go back to see him, he was actually crying for me.  As soon as he saw me and called out for me to be with him, I rubbed his head and promised that I would be by his side and he fell right back to sleep.  Later when he woke back up he did ask to watch Spongebob so I turned it on.  Imagine my surprise when he asked me to turn it off five minutes later so he could go back to sleep.

The child next to us began to cry when he woke up.  The crying was so loud that it bothered Alex tremendously.  The only way I could get Alex to relax was by covering his ears for him.  Daddy came and visited for awhile.  We had to sit in recovery till 5:30 pm when a bed was finally available.  Actually it was when a nurse was available to take him as a patient.  The room we stayed in didn't have a 2nd tv in the room so we went without.  I read while Alex slept.  He would wake up periodically in pain but he never threw up and ended up sleeping through the night.   In the morning the surgeon saw us and gave us the green light to go home after his tubing was flushed.
Here is what Alex's surgery looks like. It is actually much more painful for him than his spinal cord surgery was back in December.  You can see what procedure he had done here.
After dinner we waited about 1/2 hour to flush 400cc through this tube into his large colon.  That part was fairly easy except it did not have the results I was expecting.  He even gagged and vomited a little from the cramping.  Poor guy.  Alex was frustrated and tired so I finally called it a night.  I told him that we will keep trying till we get it right so he shouldn't worry that it will always be like this.  
Alex is one amazing trooper I tell you.  Bless his heart.
When he went to get into his bed he saw that Nolan was sleeping in it.  Alex got in the best he could but he disturbed Nolan so that he turned over and fell out of the bed.  Nolan was whimpering a little so I scooped him up and Nolan wrapped his arms around me.  It was such a  pleasant surprise that I didn't want to put him down.  But I did as I tucked him back in to his own bed with a little bear to sleep with.  As I went to finish tucking in Alex he was already nearly asleep.  
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Nolan and Alex enjoying a treat.
It warms my heart to think that this is Nolan's very first beater licking of cookie dough.  He sure enjoyed it.
Today Nolan saw the ENT.  I really like this doctor because she has the bestest bedside manner and the kids aren't afraid of her.  Nolan's hearing test came back with some hearing loss and it turns out that his left ear is full of impacted wax.  As she read his Ukrainian medical that is one of the most thorough reports we have ever gotten she noticed that it said Nolan had atresia of the left ear canal.  She was not able to see deep into the ear even though Nolan let her clean out a lot of the wax.  She did not want to exasperate him so she sent us home with instructions and a few droppers to drop hydrogen peroxide into his ear to help break up and loosen the wax.  She wants to see him at the end of summer to get a better look.
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Oliver is doing so great.  He has worked his way into the hearts of all of us.  He is reaching new milestones almost everyday.  He is tummy scooting more.  He is holding his bottle.  He tracks movement really well now.  He is grabbing for everything.  He laughs and coos.  He is able to bear weight on both legs for 30 seconds.  His core strength is improving.  He has also learned that he prefers to be held.  He is one amazing cuddle bug if I ever saw one.
Thanks for all of your comments about his health.  I do plan to seek a few referrals at his next check-up.  Hopefully this pediatrician won't have a problem referring him.  Finding a pediatrician with experience with DS is easier said than done. I hope she is open to me making suggestions. Trust me, I tried asking specifics when I was calling around trying to make an appt. No such luck.  It really is a hit or miss.  Dennis sees the craniofacial team.  Alex sees the Spina Bifida team.  Why is there not a clinic for children with DS?
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Caleb has finished Driver's Ed.  Pretty soon he will get his learner's permit.

13 comments:

  1. Hi! I'm glad to see your updates! I was concerned when you said there wasn't a clinic for DS. I am not sure where you are at (I'm in LA). I found these resources through a google search. Perhaps this can help Nolan. Even if you can't take him out there, maybe they can help direct you to resources in your area. :)
    http://www.dsala.org/
    http://www.dsala.org/resources-2.htm
    http://www.ds-health.com/clinics.htm

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  2. Perhaps this organization could help with a pediatrician referral, or know someone who could:

    http://www.dsaoc.org/

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  3. I'm glad everyone is doing well. Hope you find the special help you need for each child especially O. That can take a while because (as you well know) sometimes they just don't listen!

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  4. We have one at our pediatric hospital but that's not much help since we're in St Louis, MO. Maybe they have info on clinics in other states as well? http://www.stlouischildrens.org/our-services/down-syndrome-center

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  5. Laughed at the cable comment. We don't have cable so my kids love to visit Grandma and Grandpa's for the Nickelodeon channel. And the pictures of Nolan made me think of the saying, "Good Moms let you lick the beaters. Great Moms turn them off first!" They are all adorable and Alex is such a trooper!

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  6. As always, I enjoyed reading the updates about your family, especially the newest little ones. Too bad you're not closer to St. Louis. My daughter receives most of her specialty care at St. Louis Children's hospital and I love it there for her CP. They have a DS clinic there and I'm pretty sure the docs and nurses there are just as good as all the other specialty care clinics.

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  7. Hi Christine, I think the DS clinics are tied to university hospital clinics, so start by calling those, or looking at the web sites. They will have cleft palate clinics, spinsbifida clinics, and even DS clinics. The Ds support groups on-line will also be a great resources. Good hunting!

    S.

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  8. I haven't read your blog for awhile. Last time I looked, you were
    preparing for a trip to the Ukraine, but I didn't know you were adopting. Congratulations! Your new sons are beautiful. You'll really enjoy your little guy with DS. We enjoy our three we adopted from there. Often they're like whirlwind triplets, though! He sure looks snuggable, and kissable. Actually, so does the other one!

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  9. Hope things are easier for Alex today. My A found it very painful to begin with - we started with just 200mls and worked up slowly. Now she takes around 500mls and everyone just floods on out the other end no problem.

    Will he keep the long tube? We have a button now. Bit of a pain as she also has a gastronomy button and at the moment they are the same make. But when we swap it she'll have a different (and incompatible) brand to avoid confusion!

    It has definitely helped A to have a supportive seat around the toilet - she needed sides to hang onto otherwise she tenses up and doesn't let anything out.

    I'm sorry it was more painful than his previous op. always takes me by surprise when the "smaller" surgeries turn out to be so sore. A was in for ten days but she had a mitrifNogf and bladder augmentation at the same time
    , so had a lot of healing to do.

    If A wants some war wound pictures I'm sure my A would be happy to send some offline for you? Not quite the same as she has both buttons, but if he's needing connections,,,

    How nice to have a Spina Bifida clinic. I'm assuming that means a long day but everything done at once? We just yoyo back and forwards between the varis specialists and three different hospitals. Still, good Dr.s all, so I'm not complaining.

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  10. Can Rachel drive/does she have her permit? Just wondering since she's older than Caleb.

    -Tara

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  11. Hi!In your area if you have a Down Syndrome parent support group the parents in that group maybe able to give you some leads on some great medical centers who treat children who have Down Syndrome. Oliver is so happy. Good luck Pat

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  12. Praying for Alex to continue to heal. I had never heard of the surgery. Thanks for posting the link! Love the Nolan hug story! I am heading down your way the end of August. Perhaps I can swing by and hold that baby who loves to cuddle so much :).

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  13. We do not see a DS specific doctor, but a clinic for kiddos with developmental disabilities, so the team sees many children with DS. You might ask around if you are close to a Children's or Shriners hospital.

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