Summer is for playing

And we've been doing that... kind of... Do you consider cardboard boxes and packing tape playing? Yeah me neither. Emma has been amazing. She is pretty used to all the attention being on her but since we sold our house we've been busy with packing organizing cleaning and moving on out. We closed on our house on June 30th. It was sold to a very sweet couple with two little girls who we are told were soooooo excited to be so close to a park. Our prayer is that they are as happy and create as many memories there as we did these past six years.

Currently we are staying with my mom. This has been a very hard adjustment for little miss Emma. We brought all her furniture over but it's still be hard. It doesn't help that she is cutting her 1 year molars. Those things look PAINFUL. Its a good thing we cut our teeth when were babies, otherwise the world would be one hot drooling mess. My poor girl though. Through all of this she is still most of the time her cheerful happy go lucky little baby self. We've kept a pretty good regimen of infant motrin and orajel though. She has had one fully break through so 1 down 3 to go. :(

In my last post I had mentioned that Emma was having staring spells. They continued and since she has had a history of major seizures I decided to call Neuro. We got Ems in for a 30 minute EEG. She is AMAZING. She hadn't slept ALLLLLLLLL day (per their request), she is teething and she is very guarded about people touching her head. I'd say all in all she handled it like the champ that she is. We go the results and they didn't show anything. We have a follow up with Dr. Shapiro on July 21. I'm going to talk to him still about her staring though. Its just unsettling to me. So I'll keep you posted on that.

Emma was also referred for a speech eval. We had that this past Wednesday. She did very well, the therapist said that her receptive speech is right on track however her expressive is a little delayed. She jabbers all the time. Her and my aunt (hi zia) had a 10 minute conversation the other day. They understand each other quite well. So it was recommended she get 3 to 4 sessions and then go back on a consultative basis.

Emma also has clinic on Monday. We get a chance to see all her docs in one place and make sure Ems is doing just as well as we think she is. :) I'll keep ya posted on this front too.

Thank you for being faithful to our girl and our whole family. We appreciate your prayers and ask that you continue them. Please pray for our little family. We are all going through some big changes and transitions that are made easier through prayer. Also please continue to pray for good health for our girl. We are so very blessed. There are many other SB kiddos that don't have it as good as Emma does. Thank you all we love you and appreciate you.

Now onto the pictures of my beauty!

We went and had breakfast at a park that is close to our new house! Emma's expressions crack me up. 

Pretty sure she was trying to take a bite out of my finger. 

Uhhh... excuse me... what did you say? 

Aren't I just the cutest thing ever?

It's a little more difficult to get pictures of her. LOL. I'll take about 8000 and hope that 1 turns out with a smile! 

There we go! 

Ignore me in this series... Emma is just to to to cute not to post!!! We took a little nap today and this is how she wakes up. Always with a smile! 

I love this little girl with everything I've got!! 

Post MRI follow up

Hello Everyone,

So Emma had her MRI on Monday the 16th. It all went well. We got checked in around 11:15. They took us back and since Emma is now over a year we are able to stay with her while they give her the laughing gas to sedate her. This isn't the only way she is sedated for the MRI. They also give her another sedating drug. But they start with the laughing gas to get her to sleep so they can start an IV. IV's are tricky on Emma. She doesn't have the best veins. Though I think I've mentioned this before. We now request the VAT (vascular access team) to come down with an ultrasound to get her IV's started and thank God they only had to stick her 1 time! WAHOOOOOOOO!!!!!!!!! I was very pleased to hear that. That is one of the million reasons why we love love love Cincinnati Children's Hospital! The care they provide for our kids is amazing!! Her MRI took about two hours and then we were able to go back and see Emma! She was still pretty sleepy when we got back to recovery but her nurse was very kind and let us hold her until she woke up.

We then headed up to Neuro to meet with our most favorite doctor ever!!! They checked her shunt and it didn't reprogram which was great! Then Dr. Stevenson came in talked to us, fussed over Emma and told us that EVERYTHING looked stable or smaller! PRAISE GOD!!!!!!!!!!!!!!!!!!! He said her syrinxes looked good and stable, as well as the cyst that is on her lesion. So all in all it was a great day!

Thank you all for your prayers for our sweet girl! God has answered our prayers! Please continue to pray for Emma though, she has been having "staring spells" its kind of like where she will just check out. We talked to Dr. Stevenson about them and he said to just keep track of them and if there is an increase to contact neurology. So pray that those cease. Also continue to pray for our family as we begin a HUGE change in our lives. Packing up our current home and move in with my mom until we can find a home that is PERFECT for us all. We've been looking at what feels like EVERY SINGLE HOUSE but to no avail. So we've put it in God's hands to lead us to the house he has set out for us.

Thank you all for being so faithful to us! We love each and everyone of you all!!!!

Here are some pictures of our favorite girl!

OH MY GOODNESS...

Holy COW!!!!!! Its been over a MONTH since I last posted. I hope I haven't lost any ladybug lovers. We have been INCREDIBLY busy. I'll get into that in a moment. I hope you all are well and enjoying your summer thus far. Emma as I am sure you all know is AMAZING and continues to be amazing. We are so incredibly fortunate to be her parents.

Where do I even begin with the updates. Well lets see. Just a few days after I posted in April, we took Emma to the ER. We kind of suspected a shunt malfunction. She was fussy and pukey and just not her typical Emma self. It was a LOOOOOOOOOOOOOOOOOOOOOOOOOOONG day. They were busy, their computers were broken and we all know what happens when we lose technology. They were pretty confident with the symptoms we were describing that it had nothing to do with her shunt. THANK GOD! So then we had them collect a urine sample. I was going to take one down to them that morning anyways because I also thought she may have a UTI. Well it turns out that the culprit was a UTI. It was a pretty bad one again. We went home with an RX of Bactrim for 10 days.

We've also had some therapy visits. They are still going well. Emma loves PT on the days when Ms. Nancy lets her do her stander for the whole visit. Well the visit on the 21st, Emma actually had to do more then just her stander. She got to swing and we tried a skateboard looking thing with Emma on her belly. I think she would have really enjoyed it but she was already so ticked off that she wouldn't calm down to see what was going on.

We've also had a few more visits at the Pearlman Center. What an awesome place that is. They are the place that is letting us borrow the stander long term since our insurance is DUMB... more on that in a minute. We went there on the 22nd and Emma got to try a power chair and she also got to ride in a regular wheel chair. Emma is amazing. She was starting to get the hang of the power chair by the time she got fed up with it. But we put her in the manual chair and she was OFF!!!! Connie at the Pearlman Center had mentioned that she isn't so sure that Emma needs a full power chair. Emma has the ability physically and cognitively to manipulate a manual chair and we'd all hate to see her lose that ability. So Connie recommended power assist wheels. They have a little motor in them and they meet Emma's effort and help her wheel. One of Nancy's biggest concerns with Emma using manual all the time is the wear and tear on her shoulders and also the exhaustion  physically and mentally that research has shown comes with full manual chairs. I think the power assist wheels would be perfect. Now for insurance to cover those. HAHAHAHAHA... praying that they will cover them with out a fight.

So onto my plight with our insurance. Nancy wrote a pre-determination for the stander which was denied stating that children without independent mobility do not benefit from a stander. Which is BS. There are some physical benefits, i.e. constipation, but also social and cognitive benefits as well. So she wrote an appeal and that also got denied, basically for the same reasons. So we asked Dr. McMahon to do a peer to peer review which is where she would call and talk to a physician from the insurance company and help them see the light. Well we were at Children's on Sunday (dropping off a urine sample because Emma has another UTI), but we ran into Dr. McMahon and she was filling us in on the peer to peer and said that they didn't want to cover it but the physician called her back and said it could be covered but it would count as her wheeled mobility. Well that wont work because she is going to NEED a wheelchair before 5 years and insurance MUST cover that. So all this to say, that we are going to be writing letters to EVERYONE that will read them about how insurance should cover standers and all the benefits that apparently they don't know about. If you want to join our mission please let me know. Probably what I will do is type up a "form" letter and I can email it to you and you can sign and fill in the blanks and then send it to your governors, senators anyone who could make a change.

In the past few weeks part of the reason for the lack of my posting is because we were getting our house market ready. We listed our house 2 weeks ago today and we got an offer on it 1 day after listing, which is AMAZING. We are so blessed that God has provided a buyer for our home. But now our search begins. We don't really have many viable options that are for sale in Anderson Twp, right now. We continuously pray and ask you to pray with us that God leads us to the perfect home for Emma and for our family. Also please continue to pray for Emma's health and well being. She has a sedated MRI on June 16th to check for her syrinx. To make sure that it has stayed smaller. Please pray that it hasn't grown and if anything that it has just gone away. We know that God is the ultimate healer and physician. So we go before him asking for his care over Emma.

You all are amazing and I think you for your continued prayers and good thoughts for our Ems and family! You are wonderful supporters! Thank you thank you thank you! Now onto the pictures of sweet Emy!!!!!

Emma likes taking selfies! 

We went to a car show benefiting SBAK and Henry! 

She LOVES swinging! 

See another selfie! 

Modeling some of her swimwear for FL! 

At a memorial day BBQ! 

Just being her gorgeous self! 

We took her to Target and let her do her stander around the WHOLE store. And in typical Emma fashion she did AMAZING! 

Trying out a manual chair! 

Wheeling it herself! 

Trying the power chair! 

We did a walk for Uncs to benefit Crohn's and Colitis

One of our 8 million (or so it seems) trips to Home Depot! 

Cheese! 

This is what happens when you need to get laundry done and have a 1 year old. Put her in a basket and let her play with a roll of toilet paper. LOL! Gotta do what you gotta do! 

Just lounging in her porch chair! 

Clinic and Easter

Well we had clinic on the 14th. It went well. We had some testing first, she had a renal ultrasound and that went well. Emma wasn't a fan of having to lay on the table by herself so the kind ultrasound tech said I could get on the table with Emma and they would do the ultrasound that way. So up on the table I went. It went better this way. She was semi cooperative, however she is a wiggly little booger. Then we went for the VCUG. This is where they fill her bladder with fluid and then take x-ray pictures to see what her bladder capacity is. She didn't like this to much either. But it was over in a jiff. Emma always has such a sweet personality and I love that she takes all these tests in stride she is such a champ.

We then went on to clinic. They were all AMAZED at how Emma handles and maneuvers her zipzac. She was the star of clinic. Everyone just stood in the hallways in amazement of Emma. She is amazing in it though I tell ya what.

First we saw Dr. Vanderbrink. He reviewed her two studies with us. We learned that Emma's bladder isn't holding the capacity that it should for a child her age. When she was in the NICU her bladder was holding about 70 ml before it would start to leak. We had a Formal Urodynamics study done in Oct/Nov and at that point it was holding around 35 ml before it started to leak, and with the VCUG it only held 25 ml before it started leaking. BUMMER. So he put her on Ditropan. This medicine should make her bladder hold what it typically should. Dr. V isn't sure why it's holding significantly less. He said it could be indicative of a neuro issue and would consult with Dr. Stevenson or it could just be a bladder thing. Ditropan has some side effects that we've already seen but all in all it isn't so bad. Emma has to take it 3x a day. She gets a little flushed at some points and her mouth gets dry. So we just have to make sure she gets enough liquids during the day and were good. Another big change though, since her capacity is higher now with the ditropan she has to be cathed before Peter and I go to bed at night. Dr. V doesn't want her going more then 8 hours without being cathed. So she goes to bed between 7:30 and 8 and then will wake up between 11 and 12 to be cathed. I think this is the hardest adjustment for all of us to make. But like everything else. We'll adapt.

Then Dr. Oppenheimer came in looked her over and said she looks AWESOME. She said they are writing a new book on kids with SB and she wants Emma to be in it because she is a star. WAHOOOO!!!!! We all know she's a star! So that was really cool. We had asked about when Emma should have her eyes examined and Dr. O said to get an eye exam because she notices that Emma's eyes sometimes turn inwards. She said this could be nothing other then the fact that Emma has a wide bridged nose. But we have an eye appt scheduled in May just to make sure all is well.

Next up was Dr. Mcmahon. She too was so impressed with Emma and her zipzac. She even took a video to show her colleagues about independent mobility. Its so important that our kiddos get this independence when they are young. There is so much research that proves the benefits for cognitive, and social development it is amazing, our PT Nancy even says that research proves that power mobility is great for this development so we might get her in a power wheelchair sooner then later.

All in all clinic went great! We are waiting for our insurance to quit being dumb and approve her dynamic stander but in the meantime we were able to borrow one from Children's. They have a department called the Pearlman Center. It is a very intensive school like setting where the kids get PT, OT and Speech in one location 2 times a week, Emma isn't involved in it but. Nancy our PT set us up for a mobility eval there and we told the lady that we worked with about our qualms with her stander and they do long term loans! WAHOOOOO!!!!!! It is so precious to see Ems in her stander. She loves it, and yet again it gives her mobility and independence that she so craves and needs.

We had breakfast with the Easter Bunny a couple Saturdays ago. That didn't go over very well. She was participating in an egg hunt put on by our local Spina Bifida Coalition and she was getting an egg and the bunny came up to her and was touching her hand and she didn't realize who it was. She looked up and I'm sure we can all guess what happened next. She recovered from that quickly though.

We celebrated Easter! It was a very nice day. It was quite a difference from our Easter last year, and I am sooooo very grateful for that. We were able to dress our girl in her Easter dress and take her to church and celebrate with her not in an isolate at Childrens hospital.

Our zoo every year has a BEAUTIFUL display of tulips. If you know anything about me you know I love me some tulips. So we had to go see them while they are in their peak this week. It was beautiful and my little princess made it soooooooooooo much prettier!!!!

Thank you all for your love and support, I don't think we could dothis with out you all! Please continue to pray for Emma's health in general. She is doing so well right now and we just pray that it continues on this path!

Here are some pictures!