Since I've last posted our family has been quite busy. We went to a family wedding in St. Louis at the end of April and Emma enjoyed herself. However our sweet girl doesn't seem to like hotels much. Hmmm... she doesn't seem to adjust well to change in her routine. I think it is good for her to have a routine but at the same time we need to work on her being a little more flexible. Not to sure how to do that but we'll get there. Needless to say there wasn't much in the way of rest or relaxation on that trip, but it was fun all the same. Before we left we noticed some odd behavior in Emma. She was sitting in the stroller and got very quiet (rather unusual for Emma) and I had asked if she was OK to which she replied no. I picked her up out of the stroller and she started crying saying "Done Done Done" the she pretty much passed out in my arms. I called Neuro and they didn't really feel that it was her shunt so we headed to St. Louis with a cautious and watchful eye on her. The whole weekend was fun. We too a tour of the Anheuser/Busch Museum. That was very neat. We go to see where they keep the Clydesdale horses. There quarters are quite lavish especially for a horse. We also got to see some other behind the scenes things which was really cool. We also went to a very neat children's museum called The Magic House. It was a very neat place all kid focused and extremely accessible for our sweet Emma. She had so much fun just exploring all that place had to offer her. She had a great time at the wedding Saturday night. She loved the music and being able to dance her little heart out. Man that girl's got moves. Sunday when we were packing up to come home she had another episode although I'd say this one was far worse/more severe. I called Neuro again and spoke with the Dr. on call who didn't think it was her shunt. On Monday we took her to the ER just to rule it out. All their test came back ok although she did have a nasty UTI that they decided to treat.
Since those two episodes were so strange and out of character for our sweet girl I decided to get Dr. Stevenson in the know. His clinic nurse spoke with him and they decided they wanted to move her MRI up. She was originally scheduled for one on the 16th of June but they went ahead and did it on the 11th of May. I was happy about this we needed to get some answers for our girl. We followed up with Dr. Stevenson the Tuesday after her MRI. It has been determined that she has tethered cord. All kids with Spina Bifida have tethered cord. They go hand in hand. It is where the scar tissue from their repair begins to attach itself to the spinal column, Its just a matter of time before most children will require surgery. Surgery is determined by when that specific kiddo begins to display symptoms. For Emma she has a few indicators although she isn't loosing function and she didn't have a few other things. Although that pesky syrinx that we've been watching did get larger. All this to say that Dr. Stevenson gave us 2 options. We could either wait and have another follow up MRI in July and if her syrinx is bigger then operate or if it stays stable then we can continue to watch it. ORRRRRR we can go ahead and operate. He said there was no wrong answer. Peter and I originally left saying we were going to wait but then we got home and discussed it and we decided we are going to go ahead with the surgery. What a killer choice I mean on one hand what if nothing changes but on the other hand we both feel like she is in pain. That following weekend she ended up having 2 more episodes of what seemed like excruciating pain. That pretty much verified what we already knew but it helped us realize we made the right choice. Emma's surgery is scheduled for July 10th. She is the first surgery of the day seeing as it is a long surgery (5-7 hours). She should be in the hospital for 5-7 days. The first 3 of those days she will be pretty heavily medicated because they don't want her moving. They also don't want her in pain. Then the following days will just be pain management and getting her back to a regular diet and out the door. We so covet your prayers during this time. This is a lot for us to handle and to digest. We know that surgeries are always going to be in Emma's future so we are prepared to that degree but it is never ever going to get easy knowing that she will have to go through this.
Sorry this has been such a long post. Emma is doing so well in all of her other therapies too. We just wrapped up our Aquatic therapy session. We love Ms. Paddie (as Emma calls her) and she has helped Emma immensely. She is progressing very well in her Speech, OT, and PT. Her vocabulary is out of this world and her little voice is soooooo cute! She is still counting to 10, every time we try to get her to go past that she can until the teens so she repeats 11,12 and then 13-19 turn into her just saying TEEN. It is adorable. She also has the beginning of her ABC's down. She can get up to about G. So we are working hard on that as well.
We as a family got a membership to a local water park. Emma loves swimming and they have a very nice warm water pool and a pretty fun wave pool too. We've only been able to go twice since we've had rain and cooler weather but both times she has thoroughly enjoyed herself.
Emma is such an amazing little girl and there isn't a day that goes by that she doesn't have us all laughing at something she has said or done. Thank you all for loving her and loving us. Your prayers and support mean the world to us. So thank you. Please keep them coming especially in the weeks ahead and I promise I'll do better with my updates pre and post surgery.
Thank you all!! Love you all!!!!
This is Emma trying to get out of Pinky
Her progress that she made in the pool amazes me.
She loves the zoo!
On the train.
Before heading into her MRI
Her prizes for doing such a good job during her MRI.
She earned herself some "cream"
I hope this video works. It is hilarious. She absolutely refused to go over the glass in the bridge at our aquarium.
During an OT session.
Gigi was shopping for new glasses so we decided to play along. Don't worry her eyes are perfect. We just had an ophthalmology appointment.
Showing off her muscles.
She got a cool new sandbox.
This is one of the new skills she learned in aquatics. She can get herself out of the pool with minimal help.
So strong.
Our first trip to the beach.
We actually went to the beach today and she had a great time!
