Sunday, May 24, 2015

Catch Up Part 1

Well......Where do I start after more than a month of not blogging. At a different phase of our life I would have been hard pressed to come up with something to write about but what we pack in over a months period of time some days feels like a years worth of life.

I'll start with a quick recap of Simon and his heart. Simon went in for an MRI and 3D echo. The poor child was completely traumatized by just putting the hospital gown on! We waited quite a while to be brought down for the MRI so it became quite a trick keeping him occupied and not in hysterics. I mistakenly thought I could handle this procedure on my own and had Doug go to work. The panic set in as I watched Simon scream just before he went to sleep. I had to walk out of the hospital and called Doug. He answered and I said "You need to talk to me!".  With tears streaming down my face I began shaking so bad that I had to get off the phone. I had no idea I would react that way. The trauma of losing Gideon is real and raw some days. Anyway, back to Simon. A week and a half after the MRI the pediatric cardiologists gathered and came to a conclusion on surgery. Simon is not a candidate for a repair. The valve was in a good position to separate it into two valves but the arteries and such are so misplaced that it made a repair impossible. What the future holds only God knows and I will trust Him. That doesn't mean it's easy or that I really like it but our Father in Heaven knows all things and will only give us the "best gifts". We are all trusting in His plan and hoping that plan includes sustaining Hyrum through another loss and this time a brother he has embraced with his whole heart.

We went into the cardiologist the day after hearing the bad news of no repair. We discovered, as we suspected, Simon has lost weight. He really should have gained a few pounds so the doctor was pretty concerned about it. If we don't get his weight up by the next appointment Simon will go on a feeding tube. We feed him whole milk with heavy cream chocolate milk all day long. We can't get him to eat anything so tonight I decided it was time to force the issue. Through many tears I force fed him 5 bites of lasagna. I felt lucky that he didn't spit it back out at me. He's done that you know. Simon is also on daily antibiotics because he has no spleen and oxygen at night. I haven't been real good at putting the oxygen on him because he looks so good right now. I know he will get purple again but while he is not I will give us all a break.

Simon is very connected to Gideon and Joel! He talks about Gideon and asks questions every day. I love to see that connection and love Simon has for his brothers that he has never met in this life. I wouldn't believe this if I didn't witness it every day. It is not something we have created. Just a few days after being home Simon wanted to know who the pictures on the wall were. I told him it was Gideon and Joel and they were with Jesus. It went no further. Simon has made it very clear to us that he knows those boys. He is adamant in letting me know he does not want to go with Jesus though. The day he tells me he wants to go see Gideon instead of Gideon coming here I will get worried.

This picture was take this week. He's had a hard time emotionally and some of his anger is back.
One night he pulled out his clothes from China and his coat and had to dress in them.
The poor little guy. I am so grateful he is HOME!

Yes, his shirt says "Handsome is my middle name".
Very appropriate.
He loved feeding the ducks. The ducks just need bigger mouths for the 
large pieces of bread he throws.
From now on we are using duck food. Novel idea huh?

Simon has done well overall with his adjustment. He calls me "mama" often and not just "ma", which is great progress. The other day he told me he has 3 mama's. In the beginning Simon would tell me that he didn't need another mama because he already had 2. He was counting his Ayies, or nannies, from the orphanage and I was not one of them. I am now counted as a trusted person in his life. Simon can be very funny! He can also be a good manipulator. I had to leave for the day last week and I was worried about how Simon would do. I gave him a hug and kiss goodbye and he started to whimper. He asked if he could watch a Thomas the Tank Engine movie that he had just finished watching. Like every good mother I thought a movie may make things easier with me not around. So I said yes. Later that night when I got home Pierce and Creed told me that Simon had told them a story. With a big grin Simon said "Mama bye, Simon whaa whaa, two Thomas movie." Needless to say, I have his number and he isn't getting away with anymore of that.:)

4 days after finding out about Simon not getting a repair Bria had a yearly checkup at Shriner's. The doctor we use now discovered for the first time that Bria had 6 toes on one foot. This had nothing to do with her Amniotic Banding or club foot. The extra toe is genetic and the chances of having both issues in one child is, from what the doctor said, zero chances. I would have to disagree with the doctor on this one. Bria has it. Leave it up to a Walker, we can't do anything halfway. The next day Bria was in for surgery to take out the 6th toe. We didn't have to go in for Simon so why not fill it with another child, right? Bria did really well. They took out most of the bones of the 6th toe but could not remove the last bone connected to the tissue that controls the movement. They ended up cutting that bone in half which causes a lot more pain during the healing process. Bria was down for two days when we encouraged her to get up a little and move around. She took that advice and has been up all day since. She was off the hard core pain killers in two days and is now on intermittent Ibuprofen. She used the walker for about a half a day then got rid of it. She is one tough cookie.

Bria's doctor is great! She is good with the kids. Good with the moms. But best of all....
She finishes a day of 8 hours and 7 cases of surgery and still 
cuts out hearts from wet glow in the dark cast material.
You gotta love a doctor like that!

Lovely hair.
Yes we use Christmas wrapping paper all year long.

1 comment:

  1. Oh dear friend; you have had so much recently. That Simon is such a sweet one; may he receive the gift of healing at some time. I feel sad he can't have the surgery. We need to talk more about this one.
    That adorable Bria; went through this like a real trooper. the casts are awesome. Children are so resilient. Yes, that doctor is a special one to do this kind of thing.
    Trust me you are not the only one to use Christmas wrapping paper all year long.
    Let's go to lunch~ Hugs for this one!