When we accepted G’s referral all we knew about her condition were the words: repaired meningocele. We had a vague idea of where the meningocele lesion was on her but that was about it. We had no idea if she would ever walk or anything. I, personally, didn’t really think about it that much while we were waiting. Which is actually surprising since I am so prone to worrying about everything! I think that was my Heavenly Father’s way of letting me know that it was all really going to be OK. And it is.
This girl is thriving. She is walking without any assistance. She is playing with anything and everything. She is saying new words everyday and learning signs with her sister. She is loving and playful and an absolute joy most of the time. She is so VERY smart too. With as many delays as she had when we got her it is amazing to see how far she has come in the last 4 1/2 months.
Before we left to China I set up an appointment at Scottish Rite Hospital for her. They have a spina bifida clinic here and it is wonderful. Her condition before it was repaired is really a mystery to us since we have no imaging (X-rays or MRI, etc.) and no history at all on her. This first visit was just to answer a few of our many questions. This visit was back in October when she was just barely starting to take a few steps on her own. She was cruising around the furniture without problem but those steps without something to hold on to can be scary! She had lots of fun cruising around all the chairs in the waiting rooms we visited that day.
This is her saying, “Uh, oh!” when the board came off of the tower. It’s meant to be removed and the toy played with but she had no idea and quickly looked back at me like, “Help me fix it, Mom!"
After an initial visit with the doctor we had some lunch and then said goodbye to Daddy and E who needed to head home and take care of the rest of the kiddos. I stayed with G to get some x-rays and an abdominal ultrasound. We had a little break between the chest and back x-rays and the ultrasound and G fell asleep right before they called us back. Isn’t that always the way it happens?! So she awoke to me laying her on some strange table and her shirt being removed. Not a happy girl. Luckily she has those fingers and they calm her down quickly!
She really freaked out when the lady put the goo on her side and started rubbing the ultrasound wand on it. I was able to settle her down and soon she was fine. We played with my phone for a little bit to pass the time.
After that was all done it was off for another x-ray. A VCUG this time. We were all really interested in seeing how she would react to this test. If she cried and fussed a lot while they put the catheter in that would be a good sign that the nerves affected by her meningocele lesion weren’t damaged too badly. She wasn’t happy about being undressed and put on another strange table but at least she wasn’t waking up to it this time. She settled down much quicker this time.
There was a little TV screen of to her left and she could just barely see it if she turned her head up. She figured out she could reach the on/off button with her hand shortly into the procedure. Turning the TV off and on kept her pretty occupied. She even learned to say ‘off' and ‘on’ after a while since I was repeating it as she was doing it. Smarty pants!
Have I mentioned how freaking adorable she is?
This procedure involves inserting a catheter into the urethra and then injecting a radioactive dye into the bladder. This allows an x-ray to be taken of the organs not normally visible with an x-ray. The second the tech tried to insert the catheter G started screaming. The tech didn’t use any numbing medication on the first try because we really wanted to see whether she had feeling there or not. And hallelujah when she started screaming! The tech immediately stopped and used lidocaine the next time. It was uncomfortable for G but not painful and once it was inserted she didn’t make a peep.
Everything looked good with the x-rays and ultrasound. We didn’t get a ton of answers today and we now have some more questions but at least we are moving towards knowing more about her condition. We’ll go back for some more tests in January sometime including a sedated MRI so we can really get a good idea of what is going on back there and some more urologic tests. The doctors and nurses (who see spina bifida patients all the time) all remarked how well she is doing. One nurse even squealed in delight when she saw G wiggling her toes! I guess that’s not something they see all the time.
After the last x-ray was done we had a while to wait for Daddy and all the kids to come back into the city to get us. I decided to take her for a walk outside since it was fairly nice out. Once we got outside, though, the wind picked up quickly and big, dark clouds started moving in.
We packed up and got back inside just before it started raining. G fell asleep pretty quickly after that since she had only gotten a mini nap before her ultrasound. I held for over an hour while she was sleeping and enjoyed every single minute of it. Probably because I had a chair with arms on it! :D
She could not be more perfect or beautiful. We have certainly been blessed with this precious little girl in our family.
And how blessed we are to live so close to this wonderful place! I’m sure we’ll get to know it well.
