Sunday, July 15, 2012

Catch Up Post

My heart is filled with joy.  Our whole family is together and the Lord continues to bond and strengthen us in ways that only He can.  Nolan and Oliver are transitioning nicely as if they feel it in their bones that they are home.  Yes... they are home.
After a few days home I got out the few souvenirs I bought for the kids.  I passed themout after dinner one evening.  Dennis was super excited to get his big animal balloon.
Nolan couldn't wait to get his either.
Some friends of our came over to visit.  They were and are extremely supportive of our adoption.  Here is Julia pulling the wagon with Nolan and our friend John.
When Nolan first got home he was very scared of all our animals.  After 4 or 5 days he began to warm up to them.  Now the kitties have to run away to avoid being lovingly Nolan-handled.
Bless Dennis' heart.  He is taking his big brother role seriously.  I am so proud of him.  After shots at the doctor the other day, Oliver was very cranky in the evening.  As I rocked him he kept up the fussy crying until Dennis came over to him and began singing.  "I love you so much.  You don't have to cry.  Mom is holding you.  You were a brave boy with the shots.  It won't hurt in the morning.  I used to get shots.  God loves you in this family.  It is time to go to sleep.  Hush baby Oliver.  It is time to go to sleep."
Dennis' heart was full when he saw that Oliver finally closed his eyes and went to sleep.
Alex loves to watch Oliver.  He is very gentle with him.  I love this sweet picture of the two of them.
William has probably taken the longest to warm up to Nolan and Oliver.  Little by little I see him spending more time with them.  We were in the middle of cooking dinner and Oliver was getting hungry.  When William passed through the kitchen I asked him if he would be a great big helper and hold Oliver for a few minutes while I made up his food.  William said yes and here he is.  William is not one to ask to hold any baby so this was a wonderful way to get him involved.
Caleb has been hanging out with Oliver more and more.  It is pretty sweet. 

Today we went to church for the second Sunday with the boys.  A few of our older kids help out with childcare and would be with the boys but John and I took them into the main service with us again.  The boys just sit in our laps.  Afterwards we stayed and had lunch.  Our church has activities planned every Sunday after church during summer to promote community.
Now that we are home Nolan seems a bit more bonded to the kids than to me at this moment.  I think he sees me as the one who puts him to bed, the one who tells him no, the one who reminds him to go potty before bed.  He sees the kids as the ones who he has fun with and nothing else.  Of course I notice this so John and I are taking steps to ensure bonding.  When we get ready for church Nolan is in our room with us.  Dennis loves to be in our big bathroom racing cars across the floor when we are getting ready.  He also loves to pretend to shave and put on deodorant with Daddy.  Nolan is learning to pretend too.  The other day he actually wanted to be in the bathroom with us when we were getting ready.  We also have him sit next to us at meals and I tend to help him with cutting up his foods or scraping up the last bite.  Throughout the day I call out Nolan's name to come over to me just so I can give him a kiss.  He is a sweetheart and I just want him to know without a doubt that we think he is one precious little boy.
After lunch the kids played in the water.  They all had so much fun!
Mr. Blue Eyes
Before we got out of the van I told all the kids what the plan was with all the wet clothes and towels.
As an example John also put his wet clothes out here. :)
Nolan and Oliver went to a new pediatrician for their physicals.  I say new because I had not taken any of the other kids to see her.  
Nolan is 36 inches tall.  He weighs 28 pounds.
Oliver is 30 1/2 inches tall.  He weighs 20.9 pounds.  His head circumference is 18 inches.
They both got three shots each.  Nolan went first so he would not freak out after watching Oliver get his shots.  He cried but did not carry on for long after they were done.  Oliver didn't cry with the first shot.  But his feelings were sure hurt after the 2nd.  Bless both their little hearts.
Both boys have mildly gunky eyes-- not pink eye-- but definitely something that she thinks warrants eye drops.  Oliver might have a slightly clogged tear duct I told her but the medical report didn't mention it.
The doctor doesn't want to do anything with Oliver's reflux right now.  She wants to see if it will improve now that he is home.  She suggested that we keep him in his high chair after eating till his food settles.  She has ordered a barium swallow.  I will take Oliver back in 6 weeks to see how he is doing.  We will discuss things like the frequency of his spitting up and his weight gain.  She was impressed with our translated medical records that we gave her from the baby house.  She did not refer us to see a geneticist to confirm his DS.  I have heard from other Moms that this needs to be done so I would love any of you to chime in.  She did not refer us to a cardiologist because the report says his heart is fine and when she listened it sounded great to her.  Yay!  His congestion has gotten much better since we have been home.
As for Nolan I told her about the ENT appointment I already made and the consult with the plastic surgeon coming up to fix his cleft palate.  He is already getting plugged into the craniofacial team clinic too.  Nolan's official diagnosis is EEC Syndrome according to the medical reports from the baby house and since it was diagnosed by a geneticist there she doesn't see the need to refer him to a geneticist right now.
For being in an orphanage for all of their lives she was very impressed with how healthy both the boys are.
Praise the Lord!

22 comments:

  1. Thank you for this update. I keep you in my prayers and am wowed by your energy and togetherness. May the Lord continue to bless you as you do amazing things for all your children!

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  2. Hi Christine
    It is lovely to see you guys bonding together as a family & that the boys are settling in well. You are amazing & have a beautiful family!
    Blessings
    Renata:)

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  3. Hi Christine,

    Oliver very evidently has Down Syndrome. I cannot see what genetic testing would add. Even if he were Mosaic (and I highly doubt it), it would not change a thing about him or his care. When doing a test the first question is always whether it will change your management of the patient. In this case I cannot see how it would.

    Best,

    ellen

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  4. All your kids are gorgeous, but Dennis just melts my heart! He's so sweet, and he's looking so grown up! Nolan reminds me of Denis a couple a years ago, so cute!

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  5. Looks like you all are settling in well. I too admire your energy!!! Can't wait to meet Nolan and Oliver soon. :)

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  6. Cool post! We love & thank God for all the Servants in your family!Cant wait to watch Nolan & Oliver grow!!

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  7. Caroline has drops for her gunky eyes too. I love seeing Nolan and Oliver at home!!

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  8. Great pictures! So nice to see everyone home :). You are one busy mommy, wowza!!

    Nothing like having a baby in the house. I love it too!

    So sweet of Julia to have cooked you a special dinner upon your return.

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  9. Jasmine has EEC syndrome. Well, actually they told us that for ten years but now say she might not!!! Strange.

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  10. I've two children that have Down Syndrome.

    1) Do a genetic test. Their are various forms of Down Syndrom and pinpointing the exact form can be important for future medical care.

    2) Make an appointment to see a cardiologist. I cannot state the number of times a GP has declared a child with Down Syndrome "heart healthy" and something is missed. An EKG, echo and full workup should be made. This can make sure that no underlying diseases exist and prevent major tragedies in the future.

    3) See if you can find a GP that has experince with Down Syndrome.

    4) Make sure that when Oliver reaches two or three he has an x-ray to determine if he has Atlantoaxial Instability. This is a somewhat common and devestating spinal issue in those with Down Syndrome. Along with cardiac disease, it is among the leading causes of "unexplained death" in those with Down Syndrome.

    You need to educate yourself about the unique health issues that can arise (such as a form of lukemia).

    Oliver needs more then a brief lookover by a GP. He could have health issues that you are unaware of and could put his life in danger.

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  11. If you apply for SSI benefits for Oliver he'll need genetic testing done. (although DS is on their "presumed" list, they will still require documentation) School is not supposed to put DS on an IEP as primary diagnosis unless there is confirmation, however I have never in 17 years had anyone ask me for documentation of diagnosis! Even Asher, who's features are very different and many who know DS ask me hesitantly, "So..umm..Does Asher have DS too?" So, if you're not going to apply for SSI, and school doesn't require the documentation, then there is no reason to test.

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  12. HI Christine,

    You definitely need a blood test to dx Ds. You will need it for any future services that Oliver may need that are offered by the government/school/ECI. All babies suspected to have Ds who are born in the US, will get a blood test to confirm, regardless of facial features. Adoption should be no different.

    Also definitely get an echo of his heart. Heart defects are just all too common in people with Ds and do not always have a 'sound' early on. Our youngest son's, he has Ds, heart sounded absolutely perfect! No murmer, no nothing. Yet, he had no septum, no mitral valve and no triscuspid valve. He had a malformed central valve due to CAVC. His heart sounded perfect, though.

    Same with our daughter, also has Ds. Her heart sounded great but she has aortic artery stenosis. All the doctors we have ever seed HIGHLY recommend an echo for all kids with Ds. If your new Dr will not refer you to a pedi cardiologist, please find one who will. It's that important.

    So glad your boys are doing so well. LOVE them!!

    Debbie

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  13. I LOVE this post! Everyone looks so happy! I hope the transition is going so smoothly. :)

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  14. Hi there our sweet Reed family!! It'sbeen nice to read the updates and see all the pictures. Wish we were closer to come and visit ourselves, but for now pictures will have to do. Glad all is well and to see/hear that things are going well. We are all well in Texas. Slowly growing...19 week this week...getting excited!! I finally got my RN lisence, now to decide about work for 3 months. Paul is hard at work getting the feedlot ready, we hope and pray for the permit to come before Aug. God is so good to us and we know His timing and plans for our lives are perfect. Miss you all and take care. Love and hugs to you all. The Lindeques

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  15. Please don't take this as a criticism. I'm honestly trying to help.

    You are taking Oliver's DS far, far too lightly. This is not like the physical deformities of Nolan and Dennis.

    DS is a very deceptive disease. Intellectual delays aside...DS has many serious effects that can kill Oliver if you do not "step up" and take this seriously.

    Heart disease: A GP's quick listen of his heart does not confirm that his heart is healthy. Frankly, the fact that the GP took Olivers DS so lightly would have me running to another doctor.

    Oliver can have undiagnosed hearing problems, heart issues, breathing issues, and as another person said spinal issues. The lung, heart and spinal issues can kill Oliver. Unexplained death is a major cause of the death of children and youth with DS. With spinal issues, simply being pushed over onto the ground by an excited friend can kill.

    Over 50% of children with DS have some form of heart disease.

    Over 20% have some from of lung disorders from mild asthma to something more serious.

    Over 20% of children, with DS, between the ages of one and five have a risk of developing acute megakaryoblastic leukemia. While very treatable...it is something that can be unnoticed until it reaches a critical point.

    You need to find a GP that has experience in DS.

    You must take his diagnosis seriously...if you continue with the mindset of "the GP says I don't need to do anything" you are risking Olivers life.

    Again, you are very new to DS. But you are not taking the issues that come with it at all seriously enough.

    Please, please, please take this seriously. Olivers life depends on it.

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  16. Dennis comforting Oliver--how absolutely precious!!!!
    Looks like lots of fun playing in the water.
    One thing that struck me in picture #11 were Sveta's blue, blue eyes!! And what a cute picture of Julia and Alex.

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  17. Great post. It seems like Nolan and Oliver are transitioning into your family so well.

    If you ever have time, I would love to see a video of your kids. I feel like I know your family from all your pictures and stories! But it would be neat to hear their voices.
    If you don't feel comfortable doing that, though, I totally understand and don't worry.

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  18. I have adopted children and know many families. I have noticed huge gaps with families that do not go to an international clinic. I would def say at least a referral from your Dr to the xlinic and go from there

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  19. Im so far behnd on my own blog and on reading blogs but once in a whie I stauk your blog. I'm so happy for your family and the boys. The part about dennis singing was so sweet. so even though I dont comment often, im here lurking. haha. take care

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  20. What a fabulous update! I was crying over Denis's song for Oliver! You are doing great Mama and Papa! What a blessing you are not only to your family but to all of us "on-lookers" too!
    Hugs!

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  21. I absolutely hate when pediatricians say that a child has no heart issues just because their heart sounds fine. They should know better. The reason this makes me so upset is because I was told the same thing about my oldest when he was young. He does not have Down Syndrome, so there were no heart associated risks with him and his heart sounded great. He could have been one of those children that just dropped over dead. We had his heart tested after our 3rd child was born with a very severe heart defect. He had 2 congenital heart defects that went undiagnosed for 7 1/2 years. He has since had heart surgery and will likely have to have another one in his lifetime. And the crazy thing is that I asked Bout having his heart checked when he was a baby because there was a family in our church whose 6 year old died suddenly of an undiagnosed heart defect. I was told by our pediatrician that he did not need to have his heart checked because it sounded fine. I trusted him, so I believed that if a heart sounds fine than it must be fine. I have since learned that there are SO many heart defects that cannot be diagnosed by just listening to the heart or even by an EKG. You could not hear a murmur in either of my boy's hearts and they would have both passed an EKG with flying colors. My motto is that every child should have an echo, especially those who are at risk for heart defects (like children with Down Syndrome). 1 in 100 children are born with a congenital heart defect and with children born with Down Syndrome that number soars to 40-50 in100. The first appointment we make will be a cardiology appointment. I only tell you this because this has happened to me and I would never forgive myself if something happened to Oliver and I didn't tell you.

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