Kai’s Spinal Surgery

Last March we flew to Columbus Ohio to have a full battery of tests for Kai. One of the things they examined was Kai’s spine because many children who are born with similar colorectal malformations have issues with their spines. At the time the doctors gave us their initial impression that his spine was fine. We were relieved.

Several weeks later, however, we got a phone call from the Columbus neurosurgeon who said that upon further examination of his MRI, he appeared to have what are called “fatty filum”. Basically, the bottom of your spine should be free floating. Unfortunately, however, Kai had fatty deposits on the bottom of his spine that would “tether” his spine as he grew, affecting everything below that point. The doctor recommended surgery.

Sadly after meeting with the local urology surgeon he also stressed that Kai’s spine needed to be addressed first. We met with a second neurosurgeon who also agreed, so we got this surgery on the books.

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We started the day bright and early Monday morning with a very happy boy. I had prepared him the best I could, but he still said he thought it was going to be “really scawey.” Despite those words though, his smiles and confidence show how far he has come in the months since he has been home. He feels safe.2015-07-16_0005He was so sweet as they wheeled him away, but it was hard to let him go. Luckily we had family there to wait with us.2015-07-16_0004He was pretty pitiful for the next 2 days. He had to remain on his stomach, and he was in a lot of pain.2015-07-16_0006 2015-07-16_0002

I tried to be strong for him, but after 2 days and nights of pain, I broke down and cried with him.

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Finally he turned the corner and his happy, sweet personality came back. It was a welcome sight for all of us.

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He has to remain laying flat for another two days. Honestly that part has not been as hard as I was afraid of. He has been happily playing with cars and stickers, and of course he has gotten the rare privilege of having a show to watch all to himself. Every day should be easier from here.

Now we have to wait about six months or so before he will have his next urology surgery. On one hand I am so glad that we have made the first step toward all of the repairs that Kai needs, but at the same time, I am dreading having to go through 2 more surgeries in the next year or so. This was so hard on him, and hard on this mama’s heart.

I am hoping and praying that even though this experience has been difficult for him that he will not take backward steps from all of the progress he has made. I’m hoping that he will be able to just know deeper in his heart what it means to be a family and that we will be there for him always…

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The graduate- 2015

This week Kaitlyn graduated from kindergarten. She will be leaving the school that she has known and loved since she was two years old.

I have said this before, but I always hate it when people remind me to “treasure these moments” or that “time goes so fast!” I already feel acutely aware of these things, so it feels like terrible pressure when people give me these undue reminders. Too much stress!  “Did I treasure them enough?” ” Have I paid close enough attention?” ” Oh no, she will never be 6 years and 2 months and 2 days old again, did I miss something???” No good.

And Kindergarten graduation is sort of a huge banner screaming out all of those reminders about time.

I tried to prepare myself. The well dressed excited kids, the sentimental words, the songs. Oh the songs. It is a lot for a mom’s heart.

I know that everything  will be different now. She will be in school twice as many hours as she is now, which means less time that I get to spend with her. She is leaving a safe, small school where she knows everyone, to a big place where she only really knows her brothers. She is moving on to big kid world with homework and more after school activities. She is leaving her very best friends who she has known her whole life. Oh yeah, that means I also won’t be sharing being a preschool mom with some of my favorite friends anymore. :(

It is almost too much when these huge time markers come up. Kaitlyn is terribly sad. We have had a lot of tears in our house about this huge change, and saying good bye to so many people that she loves. I am trying to be there for her and hold her, but my heart is breaking a little bit too.

Please don’t grow up too fast, sweet girl. I’m trying to treasure the moments but it is so hard when you keep moving so fast!!

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Ridiculous Spring Catch-Up

Okay, I keep having things that I want to write about and I feel like I can’t because I haven’t even acknowledged that my girls turned another year older. Two months ago. Pitiful.

So here is our spring recap so we can get back to business here.

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The girls were very well celebrated by family and friends as they turned 6 and 5! Seeing their faces when Supergirl walked in the door was priceless!

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We had a fantastic Easter, complete with dyeing eggs, multiple egg hunts, and fun with the bunny. Kai was a big fan of this holiday, pretty much all around.2015-05-18_00072015-05-18_00092015-05-18_0008The girls requested a real tea party, so we made that happen. My girls are so lucky to have the best aunties in the world!2015-05-18_0016Spring break was great fun in the mountains with dear friends.2015-05-18_0017Lots of cousin fun around here.2015-05-18_0013Oh my, stitches again. He handled it pretty well this time. :)2015-05-18_0019

New glasses. New haircut.2015-05-18_0020Um, a few tantrums…….2015-05-18_0012

Dance recital magic.2015-05-18_0018The end of an era as Kaitlyn finishes her time with her daddy as her soccer coach. It will be Hannah’s turn next, but this girl sure loved playing with her best friends and her dad for 4 seasons!2015-05-18_0021

And still more doctor visits with this guy. He will be having his first surgery in July. Luckily he has decided that doctors are okay after all.2015-05-18_0010Alright, update complete! On with our next adventures. I really hope to blog about them. :)

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Kai Medical Update

I warn you, this might be a super long post. :)

I haven’t gotten into Kai’s medical needs much on this blog. For one thing, I am just now really coming to understand them myself. For another thing, I just didn’t feel like I wanted to talk about it.

Before both Hannah and Kai came home, their medical needs seemed huge and a bit overwhelming. When they came home, however, and made their way into our hearts as our children, their medical needs became just one tiny aspect of their whole being. If someone was trying to make the decision to adopt and felt overwhelmed by their medical needs, this is what I would want them to know in their hearts as true. It will be okay. The vast majority of children coming home from China right now have medical needs, however what they need the most is a family. And once that child is YOUR child, you DO NOT care.

Kai is such a sweet soul.  He is sensitive, and happy, and loving, and we are thrilled that he is now a part of our family. But he does have some involved medical needs involving congenital malformations of his urinary and bowel systems.

When Kai was born he needed surgery immediately. Unfortunately, the doctors in who-knows-where China botched his surgery, possibly causing lasting damages.

The positive thing that came out of this poor care is that his ongoing needs brought Kai to Little Flower. At Little Flower he was given wonderful care and love for the 2 1/2 years until we could bring him home. I will be forever thankful that his path took him there.

The poor guy had to have several other surgeries during his time in China. We really didn’t know what the situation would be when we got home and saw specialists here in America.

Luckily I found a wonderful group of been there done that moms. Outside of doctors themselves, you will not find a more group of involved and educated people than moms of children with a medical need! These mamas told me in no uncertain terms that I needed to see the absolute specialist, who is in Columbus, Ohio.

When we started the adoption process, it never occurred to me that we might have to travel for medical care. We live in a big city with premier children’s hospitals after all. But you do what you have to do for your child, and in this case that meant getting on an airplane for 3 days of extensive, invasive testing on our little guy.

It was so worth it. We got extraordinary care by specialists who had this down to a science.We had to see several specialists, but they collaborated the entire time, always taking the whole picture into account. I felt totally at ease that we were in capable hands.

And now the unknowns are known, which is fantastic. We got some mixed news. On the not so great end we found out that Kai only has one kidney, and that he has some signs of a tethered spinal cord that will have to be followed by a neurosurgeon. We found out that his bladder may never work correctly on his own, but we just don’t know yet.

On the bright side, he will be able to have some initial surgeries here at home. Our next step is to go meet with the surgeon to plan that out. A while after that we will travel back to Ohio to have a re-do of his colorectal surgery that was done in China. At that time he will also have a device put in behind his belly button that will allow us to flush his colon once a day.

It is a lot. But at the same time it isn’t a lot. We can handle it, and fortunately we have a support network of family and friends that make it possible to take care of all 5 of our children.

At the end of the day it is all going to be okay, which means that we are counting our blessings for sure.

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2015-03-16_0008 Getting ready for scans.2015-03-16_0007 Poor guy did not appreciate having his blood drawn.2015-03-16_0006 Luckily he was a champ with anesthesia. He woke up happy and sweet as can be. He made some fans out of his nurses, that is for sure. 2015-03-16_0005 2015-03-16_0009You are going to do WHAT with those tubes???2015-03-16_00102015-03-16_0003The two heroes we were there to see!!2015-03-16_0002We were able to stay at the Ronald McDonald House. It was an incredible experience.2015-03-16_0004We all earned some ice cream by the end of our trip!

One aspect of the trip that blew me away was how much Kai has changed since he first came home from China. When we first came home, he was TERRIFIED of doctors. He began screaming at the first sight of an examination room, and did everything he could to escape from doctors and nurses trying to examine him. This time, although he had some moments of being scared or upset, it was a normal reaction. He was able to calm down with us there beside him, and he was confident enough to make friends with the doctors and nurses. I think he just overall feels safer. He knows that we are going to take care of him.  And we definitely will.

 

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Visit with Gia

This past weekend we had a very special visitor.  This is Gia, one of Kai’s friends from Little Flower.2015-03-16_0014

It just so happened that Gia came home 2 weeks after Kai (so we got to meet her while we were in China), and came home to her family who were also living in Georgia. Unfortunately for us, they moved to Colorado, but we got to have a wonderful reunion for these precious kids before they left.2015-03-16_0015

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One of my biggest regrets is that I didn’t have my camera ready when we answered the door.  I had no idea how special this reunion would be. Gia ran in, both kids cried out the other’s Chinese name, and they ran to hug each other.

Oh my goodness. It was amazing.2015-03-16_0013

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These two had a great time playing together, singing, hugging and laughing.

I loved every minute of it.

Gia is a very special little girl, and she is now a part of a wonderful family. I’m so thankful that we had this time together!2015-03-16_0012

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