Tuesday, September 11, 2012

God Be With You

I have always said that Liam is my non-Down syndrome, Down syndrome little boy. He has many of the features and symptoms of children with Down syndrome. For example, VSD (hole is his heart), small in stature, small ears, hearing problems, hypothyroidism, irregular teeth, strabismus (eye condition), and he has a g-tube for failure to thrive. At one point in his life I took him into the pediatrician because he had developed a rash all over his body. At that appointment Dr.B had said that his liver and spleen were enlarged too. Her exact words were, "This means that he either has a virus or leukemia." Pretty harsh words to hear and lucky for Liam it was a virus. Those days leading up to the blood results were very long days and I couldn't help but wonder if my non-Down syndrome, Down syndrome little boy had developed yet another symptom.

True or False? The incidence of leukemia is higher in children with Down syndrome? Answer: True. In fact I will say out loud what I felt inside the day that I noticed Susan's rash. "What if it is a sign of leukemia?" I didn't want to worry myself but it has always been at the back of my mind. Especially on Sunday when it was even worse. Many of you may know that I even asked on FB what it might be, hoping that it was the suggested Roseola or allergic reaction. I felt much better on Monday when the director had confirmed that the nurse who observed Susan felt that it was also an allergic reaction. Phew! I was just happy that it wasn't anything serious.

Now let's fast forward to today's visit. We arrived at our normal time, washed our hands, then just as we were about to open door number 4, we were met by one of the nannies who motioned us to follow her. She was trying to explain something to us but of course we didn't understand. Then the director came out and motioned for me to call our facilitator Yulia, for her mad translating skills. She spoke with him first then he handed me the phone. She let me know that Susan was at the hospital for further observation. They were concerned about her rash and just wanted a doctor to take a look. She told me that she should be back to the orphanage in 15 minutes and we could wait until she came back. We were happy to wait, but 15 minutes soon turned into 30 then into 60. Finally the director motioned me to call Yulia again. Yulia explained that she may be on her way back but there was also a chance that she will stay at the hospital. She said that one doctor who looked at her was not concerned and felt that some medicine would help her rash but another doctor wanted to do some blood work and was concerned because her liver and spleen were enlarged. My heart dropped! Not going to lie, instant thought, leukemia. We were told that we could wait another 40 minutes to see if they brought her back and to hear the test results. But if she didn't return then she would more than likely be staying at the hospital for a few days. I asked if that was the case then could we visit her in the hospital but the reply was no. Lucky for us they did bring her back and we were able to visit with her for an hour but we were told that she may still go back.

We stayed inside again. As I held her I kept letting her know that everything was going to be OK. She was quite the chatter box today but soon fell asleep. I couldn't help but squeeze her even tighter today. I didn't want to let her go especially knowing that I may not see her for a few days. When our visit was over I was hoping to talk to the director to see if he had the results but he had already left for the day. I called Yulia and she reassured me that they would call when they knew. Finally, hours later I got an update. Yulia let me know that Susan did go back to the hospital and she would be there for approximately 3 days with no visitors (I did ask again hoping her answer would be different). The test results still haven't come back but they are hoping to know more details very soon. I let Yulia know of our experience with Liam and how our pediatrician said enlarged liver and spleen with a rash meant "Virus or leukemia" and I could hear her heart drop too.

It may seem hard to believe because this blog is public for the whole world to see, but I really am a private person. I do not like to jump the gun or make things like this public without having more details or confirmations. But I am telling you all that we have learned today because I need your prayers. Please pray that it is a virus! Please pray that she will feel our love as she lies alone in a hospital bed! Please pray that the doctors are led to know what is wrong! Please pray that Susan gets well! Please pray that our little baby doesn't feel alone! And even though it may not be something as serious as leukemia it is pure sadness that we can't be by her side. So please pray for my broken heart! Susan, "God be with you til' we meet again!"

We will keep you posted and for now you can enjoy pictures from today's short visit. Sadly you won't see new ones for a few days, so soak up her cuteness as much as you can!

Can this moment last forever please?

Same bonnet as our first meeting. (I wonder if they'll let me have it or if they'll notice if it mysteriously goes missing?)

Same outfit as yesterday but who am I to judge? Sometimes my kids wear the same thing for days, ha ha. 

Tired daddy, I mean baby!

So sweet!
"I love you!"
Future ballerina!
Sleep baby, sleep.

So long, farewell, it's time to say good bye.

See you soon sweet pea! (Little did we know it was definitely going to be days.) Boo hoo!



  1. I will be praying hard that it is a virus. Poor beautiful angel.

  2. Oh my goodness!! Praying for Susan and for you guys! What a crazy, horrible thing to happen right now!!! Please be a virus, please be a virus, PLEASE be a virus!!!!!

  3. We'll pray for Susan and for your family.
    Our son has Ds, heart defect (repaired at 3 months old), and so many other "side effects" of Ds. (I know that's not the pc way to say it)

    Leukemia is AWFUL and STINKS, but if Susan had that, you have one of the best children's hospitals in Utah. I hope it's just a virus too, and we'll pray for that to be the case.

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  5. Oh, Jodi, how scary -- and frustrating, to not be able to be with her. Definitely will keep her in our thoughts!

  6. Prayers for sweet Susan and your family that all will turn out ok~

  7. Father God, I pray that Susan does not have leukemia. I pray that she would quickly recover and that before long she would be headed home forever with her family. In Jesus' name. Amen.

  8. Hope everything is ok.

  9. keeping sweet Susan and her Momma and Daddy in our prayers

  10. Praying for your beautiful little one...I hope it is just a virus, and that baby Susan recovers quickly. I'm glad she's getting medical atttention, but surely wish you could be with her in the hospital. Keep us posted as you can...thanks.

    Best wishes,
    Susan in Ky
    Cousin to 2 from EE and
    RR advocate

  11. Many many hugs to you and your empty arms. I am so sorry to hear about this. God's timing is perfect and I pray that He will give the doctor's wisdom and give you and your husband patience as the days go on. How awful not to be able to be at her bedside with her. Another thing I take for granted here in the US. God bless you and Susan and your family!