Lady Bug Hugs

Thursday, January 30, 2014

Well Shunt!!!!

We didnt quite make it to our goal of 1 year but the odds had always been stacked against us anyways. It all started Friday afternoon. We hadnt heaed any results from Neuro about her MRI that she had the day before. This didn't strike me as odd. I just figured she looked perfect and there was no need for action. I had a voicemail from Childrens saying they needed to review info for her procedure on Tuesday. I thought to myself she isn't having a procedure on Tuesday. I called the number back and the automated line answered saying " Thank you for calling same day surgery" **insert panic face here** I talked to the nurse at same day surgery and informed her that Emma wasnt having any procedures on Tuesday. She said have you spoken with neuro. Uhhhhhh NEGATIVE. So she transferred me. I spoke with Amy Dr. Stevenson's sweet clinic nurse who informed me there were some changes to Emma's MRI and Dr Stevenson blocked some OR time in case he sees her on Monday and thinks she needs some further action. So now we had to wait ALLLLLLLLLL weekend until we could speak with our favorite neuro.

Monday came we spoke with dr Stevenson and he said that SB babies ventricles typically dont get enlarged with a shunt malfunction. They arent sure why they just dont. But her vents did appear a little larger and her syrinx along her spinal column was bigger too. Her appearance was fine as was her behavior but he pushed and pushed and pushed on her shunt and determined it wasnt refilling right and she needed a revision. Like I said the odds have always not been in our favor but we had a good run with her original shunt.

Emma had a shunt revision Tuesday Jan 28th at 12 noon. We were home by Wednesday around 5 pm. It amazes me how quick nour kiddos can bounce back. They are such champs!!!!! We will have a follow up with Dr. Stevenson in 2 weeks but until then we just do wound care.

I know many of you have prayed for Emma alot in her little life but even more so in this past few days. Please keep them coming. Pray that this new shunt will last a VERY long time and she wont have any infections or problems with it. You all have been our prayer warriors from day 1 and we so appreciate you!!!

Preop lovings with daddy!!!

Home at last!!!!

Thursday, January 23, 2014

New Years and MRI's

Hey all! Hope you all are having a GRAND new year! I know we are!! Emma helped us ring it in for a little bit... No, no don't worry she didn't stay up until 12am. We wished her a Happy New Year before she went to bed for the night!

She has had a great year so far. She started aquatic therapy before the holidays. We've had just one other session due to the weather. Its entirely to cold in Cincinnati to take a baby swimming. Luckily we have a VERY understanding therapist. Emma is REALLY liking the pool and the people in the pool are REALLY liking Emma. We had one lady offer to be her "third" grandmother. LOL!

Emma was tasked by her PT to rollover while we were on break. Well on January 6th she DID IT. All by her little self. Peter and I were ECSTATIC!!!! I was so proud of her. Since then she doesn't really seem to want to do tummy time. LOL.

We also had to spend the night in the hospital. We thought Emma was having a shunt malfunction. Peter has always been my even keel. There have been several times where I thought she was having a shunt issue and he has talked some sense into me, lol, but this time he was the one that suggested there might be an issue so off to Childrens we went. We went through the ER, they are AWESOME especially when you think its a shunt issue, they get the urgency behind it. We got checked in, they ran a shunt series which is 3 xray pictures, and they did a CT scan. We were waiting for the results when Dr. Stevenson walked in. I tell you what its like a celebrity sighting. We were thrilled to see him. He offered us reassurance that everything was fine with her shunt, PRAISE GOD!!! They did end up keeping her overnight just to keep an eye on her. We were sent home the next day with an rx for antibiotic because they ran a urine culture and it came back with a little infection. She had 5 days of that and was good to go!!

Today we were back at Childrens for a scheduled sedated MRI. We were supposed to have one on January 2nd but due to her cold they sent us packing. I can't blame them and I appreciate that they are concerned for her safety and just don't want to get the job done. So we went back today, we had to be there at 6:30 to get checked in. We parted ways and they got started at 7:30 or so. We were finally able to go see her at 9:40 and they told us they had to stick her 9 times before they got her IV started. My poor girl. Lucky for her she was under some sedation for this so she wasn't in any pain. She had a little rougher time though waking up. She was very fussy. They say this happens when they have to use the gas for longer times,which they had to use it for 30 or so minutes to get the IV started. We will meet with Dr. Stevenson on Monday to get the full results but the image we saw of her brain looked GREAT! PRAISE GOD!!!!!!

She is one AMAZING girl and I praise God for her and the blessing she is in our lives. We are so blessed to be her parents.

We ask that you all continue to pray for her. That her shunt functions like it should and that she remains healthy. Please also pray that the results from her MRI are good and no further action is required for her.

Thank you all again you are such blessings in our lives!!!!

This was today before her MRI.

Getting ready to leave after the MRI. Her poor eye is swollen from the tape.

Such a smiley girl!!

This is her telling her dolly all about it! LOL!

She LOVES watching the snow!

So peaceful!

Our night in the hospital, still clapping!

Finally caught her laughter on video! Its the BEST sound ever!!!

This is how we bundle up to walk across the street!!

Yay 2014!!

So sleepy!!

Happy New Years baby girl!!!

Sunday, December 29, 2013

Merry Christmas!

Well Emma's 1st Christmas was a smash! It was so much fun! Santa visited our house and Gigi's and Emma was truly spoiled rotten! She got dolls and clothes and blocks and a ball pit and a Radio Flyer Grow with me Trike! She is so blessed! I don't think she'll lack for anything to play with. We hope you all had a great time filled with family, laughter and blessings.

Since I last wrote Emma began aquatic therapy! It was a HIT! She is beginning to become weary of strangers but not while in the pool. Apparently that fear stops at the water! LOL! She did great. The therapist name is Patti, she was quite pleased. She said she was able to define some clear goals for Emma so that makes me sooooooooooo happy to hear! Peter and I were racking our brain trying to figure out a way that we can get Emma access to a warm therapy pool. We have a Mercy Healthplex about 5 minutes door to door. I called over there and they have what they call a "Junior Membership" they have an arbitrary age of 8 but I explained Emma's circumstances and the need for her to have access to their therapy pool and the club manager lifted the age restriction and now Emma is a member! I have privalages wherever she goes. So as long as she brings me along I can join her in the pool. LOL! I can't wait to get her in there on a regular basis and watch her thrive!

We also attended the Spina Bifida Coalition of Cincy's Annual Christmas party! It was so very cool to be able to get together with families who have something in common with Emma. This was also Emma's first oppurtunity to meet Santa. She was ok with him while Peter and I were standing behind her but the second we walked out it was ALL over. Luckily though he didn't put her on his naughty list.

We baked cookies as well. My mom and her friend began this tradition even before I was born and I am so excited that I can now share it with my daughter.

Emma also had her first fine dining experience. We took advantage of a holiday special at a local eatery and Emma, my mom, Matt and myself decided it was our office party.

Emma's Grandma and Grandpa Ring (Peter's parents) came into town to celebrate the holidays with us as well. We took Emma to see Santa again. This time went much smoother. She wasn't overly excited but didn't cry either! She even got snowed on.

We've had a busy season! It's been wonderful to get to experience it all with my precious baby girl.

Please pray for her, she is dealing with some illness right now. We believe it is all stemming from her being congested, but its led to lots of throwing up (at least 1x a day). We've been to the doctor several times for a persistent cough, but they are reassuring us that she is ok and that it is typical. I always worry about things being SB related that I have a hard time just accepting that this is a "normal" head cold. She is scheduled for a sedated MRI on Jan 2. Please pray that she heals before this so there are no problems, and pray that she sails through the sedation without any issues. Thank you all so much for your love and support of our sweet baby girl! It means the world to us!!!

Now onto the pics (please pay no attention, they are a little out of order)!!!!!