MRI, Walk N Roll, Red's Baby Day, and Pumpkin Patches OH MY

Thank you so very much if your still sticking around after my long absence. We've been a busy family in the past few weeks. The first of which was Emma's MRI. We had to get Emma to Children's by 12:00 pm and she couldn't eat formula for about 6 hours prior to this because of the sedation. I thought I might be able to be in the MRI with her the way I had been in the past, but to my disdain I was not. I understand it's their protocol and I respect that but at the same time talk about wrenching my heart out. Kinda took me back to the days in the NICU when I had to entrust my sweet baby to the hands of albeit very competent doctors but it was still very hard. The MRI lasted about three hours. It should have been two but they were having technical difficulties. She came out of the anesthesia like a champ, of course. We took her home and in the next few hours she was back to her sweet spirited self.

As I mentioned in my previous post we had the Spina Bifida Coalition of Cincinnati Walk N Roll. It's one of their biggest fundraisers for the year and it was AMAZING. The amount of support our Team Emmavators had was especially touching for Peter and I. We had family come in from FL and TN just to walk and show support for our baby. Fundraising went well I was quite impressed with myself if I can gloat about it for a moment. We raised a grand total of $1690.00 so THANK YOU THANK YOU THANK YOU!!!!!!!!!!!!! That was made possible by the generous people we love!!!! I told my mom that this walk is rather cathartic for us but also for our extended family. I'm not sure how much research they've done but they can see all the abilities and possibilities that are out there for Emma.

The next day we got to go to a Cincinnati Red's game. Since Emma was born at Good Samaritan Hospital we were eligible for a REALLY neat opportunity. We got a free ticket and then discounts on the other ones. We were able to get our pictures taken with the mascots, and we got to parade on the warning track (on the dirt) before the game. It was so neat although the weather stunk as did the Red's it was an awesome day for us as a family!!

We got to meet with Dr. Stevenson on October 1st to discuss Emma's MRI results. It was all good news and a few things that we need to keep an eye on. He commented on how great her hydrocephalus was from April till now.  There is room for her brain to grow which is how it is supposed to be. He said her Chiari II was now considered mild. PRAISE GOD. This was one of the MANY things I worried about and prayed over and to hear him say MILD. WOW. She does have several syrinxes which are fluid filled cavities (these are completely normal and expected in SB kids). She also has a cyst where her repair took place. She will have another MRI in January to monitor these things. He said if they've gotten larger then we will check her shunt, check her shunt, and check her shunt again. Most times if they've gotten larger then it would be shunt related. If its not then he would look at her Chiari. All things considered we have one amazing daughter on our hands and we are so blessed that God chose us to be her parents.

Today we went to the pumpkin patch. It was so fun and a good deal. Peter and I have been commenting on how much fun the holidays are going to be now that we have Emma to share them with. Their charm, and excitement are going to come flooding back as we get to experience them all over for the first time again with her. The pumpkin patch had a hay ride through the woods and to the patch and then back again. It was kind of bumpy but still so much fun!!!! We got some cute pumpkins and are looking forward to carving them.

Thank you so much for hanging out with our family through the world wide web. Thank you for your prayers and thoughts. I ask that you continue to pray for our precious girl! She is such a gift to us and we praise God for her everyday. Please pray that her syrinx and cyst go away and that she wouldn't need further intervention. Pray that her shunt continues to function as it should, continue to pray that she doesn't have seizures. But most of all pray for her overall continued good health. Thank you to all for your faith, love and prayers. They are invaluable to us!

Now onto the pics!!!

We were on the jumbo-tron.

Emma went to the Beach!!!

Well we did it!! We took our princess to the ocean!! She's a champ I tell you! She was such a great little traveler, I think she did better then the adults! LOL!! We broke our trip up into two parts. We left at 6 am on Friday morning and made it to GA and then on Saturday we made it to FL!! The only times we had to stop was to feed and change our precious girl. She smiled, laughed, slept and cooed pretty much the entire time! There were a few moments of fussiness but then like I said the adults were fussing too!!! We stayed in Sanibel Island FL. Its a beautiful place and this time of year its almost completely vacant! Which is wonderful for those of us who can still travel at this time of year. Albeit its hot but was very enjoyable. I'll leave you with pictures because that pretty much explains our whole trip!

Thank you for your prayers for mine and Peter's peace of mind while on this trip. For us it was a hard call. I know we can't keep Emma centered around Cincinnati Childrens her whole life, so I was glad that we went so she can experience these things!!!! Please continue to pray for our precious baby girl, for her continued health. Please also pray because on Sept 19th she has to have a sedated MRI. I believe I told you one of her doctors is concerned with a decrease in movement in her legs. So the MRI will tell Dr. Stevenson if there is anything wrong. PRAYING that there isn't and that she is just showing us her strong will.

Also, our local chapter of the Spina Bifida Coalition is hosting a Walk 'N' Roll on September 28th at Miami Whitewater Park. We'd love to have you join us for the walk, if you can't join us though please consider donating to this great cause. The local chapter can benefit Emma specifically in many ways, now and as she gets older. Any and all donations are greatly appreciated!! Our team name is Emmavators and if you feel led to donate here is a link... http://www.sbccincy.org/index.cfm?fuseaction=donorDrive.team&teamID=5229. Also if you'd like I am selling t-shirts as a fundraiser. You can contact me if you'd like to purchase one. They are 15.00 a piece!!

Now onto the pics!!!

She was modeling her new ladybug suit!!! 

She was deep in thought! 

This little girl LOVES her daddy!!! 

I promise she didn't help him eat a slice! 

Look at her PRECIOUS facial expression in this picture! 

First look at the ocean! 

So deep in thought! 

Diva! 

Putting her toes ONLY in the water.

Taking her morning siesta on the beach! 

She became infatuated with the palm tree that was right outside our patio! 

I think she wants to eat the burger! 

Baby kisses are the best!!! 

Clinic update!

Hello again, and again I've not held up to my end of the bargain... OOOPSSS... sorry...

Ok so I like this idea of GIF's!! They are fun!!! 

Anyways, where was I? 

Emma is amazing! Like you already didn't know that. We had clinic on last Monday. That went fairly well. Dr. O came in first and said that Emma was looking good. At our last PT appointment Nancy had said to ask clinic about possible OT because she didn't seem to think Emma was grabbing and reaching for things enough. Well according to Dr. O, Emma is doing just fine. In my mommy mind I agree. I think Emma is going to be more social then interested in toys, (save us some money kiddo). I asked Dr. O about us going on vacation and she said she see's no reason why it'd be an issue. She said if her shunt were to malfunction we'd have time to get back to Cincy which has always been my plan anyways. 

Then Dr. Vanderbrink came in. He's Emma's urologist. The week leading up to clinic I am supposed to keep a diary of her output. Well I did that, on my phone though, so while we were waiting for her ultrasound I put it onto paper. Doesn't matter that it was a paper towel. LOL!! Dr. Vanderbrink didn't mind. He said that we should continue on with her cathing every four hours until we have her urodynamics which is in November. However on the flip side, we are able to start cathing her at 9 pm and then putting the little one to bed. Right now she is still eating at 11 pm and being cathed but I have to wake her up to eat so I think she'd be able to eat at 7 pm and then go to bed, but the doc doesn't want her going more then 10 hours with out being cathed so we compromised. 

Last but certainly not least was Dr. McMahon. She is the physical medicine doctor. She also agreed that Emma doesn't need OT at this point. WAHOOOOOOOO, however she did notice that she thinks Emma has lost some movement in her left leg, which could be indicitive of tethered cord or syirnx. Both of which if serious enough could result in a surgery. We always knew surgery was in our future we just weren't thinking about it at 4 months of age. She called Dr. Stevenson, because she didn't know if he'd be comfortable with us going on vacation with this new possibility. It took some sorting out and communicating but it turns out... 

WE'RE FLORIDA BOUND!!!!!!!!!!!!!!!!!!!!!!

Did I mention that I love GIF's!!! Emma will have to have an MRI when we return but we have his blessing to go on vacation!!! 

Like always we ask for your continued prayer. We ask that you pray for Emma's health in general along with her SB health. Please pray that her shunt continues to function as it should and that she doesn't get an infection. Also please pray that she doesn't develop symptoms from her Chiari, and that she doesn't have anymore seizures. Also please pray for traveling mercies as we venture to FL and that Emma stays healthy and happy all the time but specifically while we are so far away from our beloved doctors. 

Thank you everyone for your continued support. It means the world to us!!! 

She loves her fingers. 

I was making our bed and sat her in my body pillow. I think she rather enjoyed herself. 

All clean!

We stopped at the Nike store just to check it out, I think these are a little big! LOL!!!