Sunday, December 29, 2013

Unexpected Surgery & Rounding out 2013!

It has been awhile since our last update, not on purpose! After Danielle's surgery in June was a success we were soaking up every minute of being HOME. Despite everything this poor child has gone thru, it was all proving to be needed and her progress had been remarkable! 
We recovered in July and enjoyed home, family and being away from the Hospital. We took the time to let Danielle accustom to home again, not having hospital visit after hospital visit and we prepared for Kindergarten to start! Yes, in August Danielle started Kindergarten!

We were fortunate enough to meet Danielle's teacher last year when she was having preschool at home. Her teacher came out for a few visits and it sure helped the ease into school in August so much easier. School started out fantastic. Danielle is in her Level 3 classroom with Mrs. E as her 'homeroom' she then goes to the Kindergarten room with Mrs. Felber many times thru each day to be with her Kindergarten peers. She attends specials with them, goes in for calendar and attends recess with them too. She absolutely LOVES her KKF friends and they love her just as much! We expected Danielle to be tired each night after school but boy did she prove us wrong, she wanted more, more, MORE! it took her until Thursday the first week of school to even show us that she was the littlest bit exhausted! Sister is definitely a go-getter!

We celebrated Labor Day weekend by taking a much needed getaway and family vaca. We truly felt Danielle got jipped on summer fun :( She couldn't be in the water for so long because of her incisions and the water is one thing she loves the most! So we took a trip to MN to the Water Park of America, we had been there before and knew it was a place that both kids would surly love again. The water is not only as warm as bath water but there are NUMEROUS water activities for kids and adults to do, together! The outdoor weather that weekend was crappy and cold so being at the indoor water park couldn't have worked out better! We spent many hours in the water, on the lazy river, doing water slides and letting the kids be kids and Brad and I were big kids too, it was perfect! We spent the evenings at the Mall of America and enjoying each other. It was the perfect getaway, one that Dylan is already begging to do again! It was just what we wanted to give Danielle, a long weekend of fun where she could just be a KID!

Since school has begun, she has shown her teachers, therapists, friends and even us her parents how incredibly smart she is. We fully knew she was capable of a lot, however her teacher has just begun to uncover the tip of the iceberg of what Danielle FULLY knows a lot of! And Danielle is certainly ready to show us! She loves spelling her name, saying her colors, categorizing, naming animals and even beginning to write her name. She makes choices with everything she does, communicated thru her PODD book, a few communication devices and we are working her iPad back into routine also.
The absolute most exciting moment came in gym class with her peers when one day they put Danielle in her gait trainer and she took 10 steps. We were in awe, it brought this Mommy to tears, absolutely amazing and moving with the people she loves the most! The next week came and Danielle wow'd us again by taking not only 10 steps but moving up to 37 steps, yes 37! Absolutely incredible!
Each week brought therapy sessions again, on-top of school and lots of work at home by Brad and I and her nurses during the week.

In October we went back and saw Neurosurgery and shared with them how well Danielle was doing. Her vocalizations also are WAY more than ever before. Verbally responding 'yea' and even saying many different sounds and a few more words too. The color 'Red' we've heard her say, we've heard her say 'Mama' more and even trying her nurses names too. Her eating is going very well and she is looking very healthy. Our visit went without a hitch and her Neurosurgeon even thanked Brad and I for taking such good care of her! When we want to thank him the most, he turns and thanks us, it certainly is full circle.

Late November we went to the U for 2 follow-up checks. Nephrology and Orthopedics. Nephrology was the one I was a bit concerned about. When it comes to her Kidney's, it is always the anticipation of the appointment that gets to me. Well Orthopedics was first and her previous appointment had been in April and x-rays showed things were great. I expected nothing less, she had been walking and doing well. Well, the x-ray showed otherwise. The ball of her hips were moving much further to the outer part of the socket, this was not good. Her left side which had been almost perfect before, this time was not OK at all and showed the most change. I was absolutely devastated. This meant surgery and surgery couldn't wait. The doctor explained he would do a muscle release of her abductor muscles in her upper groin area. Releasing those muscles would hopefully help her legs, to be a bit further apart when she is laying down, as yours and mine are. You see, when she lays down her legs are together from the thighs to her ankles, thus pushing the top part of her hips to the outer part of the socket. So he would release this muscle then position her legs in such a position where the ball would be secure in the middle of the socket and then cast her from the waist down to hopefully help that outer hip muscle to grow over the socket holding the ball in place. WOW, yep, that's what we said.
December 10th was the day for surgery, if we didn't take these measures now we would be risking a very complicated, more painful surgery involving pins, plates etc to keep her hips in place, NO THANKS! We will do whatever we need to do, to avoid that!
This was absolutely devastating for us and all in anticipation for how rough it would be on Danielle. No only did this mean pulling her out of school to prevent illness before surgery, but it meant being literally confined to home, not being with our family for the Holiday's and isolating ourselves for our girl's best interest. We knew it needed to be done and we didn't wait a moment longer to put preparations into place.
You can see the lines drawn in pen on the xray from April showing where the middle of the ball should be in each socket. You can see her right side is a bit off but the left side looks good, the ball is pretty well in the socket.
 In the below x-ray from November you can see her left side and how much it had changed :( The ball is nearly all the way out of the socket except for a little bit. The right side had also changed and her hips are tilted crooked. This is the reason for surgery.
We soaked up our time away on Thanksgiving. We headed to Nebraska for the Iowa game where Dylan was the Kid Captain for the Hawkeyes. Enjoyed the beautiful Fall fresh air, enjoyed every ounce of being away from home as we could, for all of December we would be know where else.

{December 10} Danielle's surgery day came. Poor peanut was nervous as ever. Getting hives the moment we walked into the hospital, puckering her lip at the sight of the door, she was nervous. We were expected to be at the University for 2-3 days depending on how she was recovering. Brad and I found ourselves once again in the Main OR Waiting room, a place we had been 6 times already this year, too much.
About halfway thru surgery Brad stepped out to get some coffee and he ran right into our angel. He peeked his head around the corner quickly waiving me over with his hand. I was more than shocked to see our Neurosurgeon and was just as shocked to see us! Immediately he asked Brad, 'what are you doing here, what is going on?' I am sure thinking he was missing something very serious! I explained to him Danielle was in surgery with Orthopedics for her hips, his response was ' good good that means she is growing, it sure tells me that I think and believe that we've done something right.' He gave me the biggest hug and a big sense of relief filled my whole body. You see he was coming up to talk to a family who he had just done surgery on their family member, if Brad would have stepped out 1 second later we wouldn't have seen him. It sure is absolutely amazing how God puts people in our lives at the moment we need them the most. As I was hugging him I looked up and saw the family members he was waiting to talk to with tears running down their face, I am sure more than concerned about their family member. I wish I could have another minute at that time to ensure that family how lucky they are to have that person under the best care of the best Neurosurgeon in the world.
Danielle came thru surgery very well. She had about 3 hours of non-stop crying until we got pain under control and that was by far the hardest part. She then was throwing up from all of the morphine, and she was quickly figuring out she couldn't move. By later that evening she was comfortable and showing us our Danielle smiles. She sure is amazing!  Her doctor surgeon came in that evening and said we would be staying the night and to not be surprised if her pain the next day was even worse. He would follow-up with us then.

Daddy took night duty and took such great care of his girl, even getting a few hours sleep. The next day came and Danielle was doing well. So well that they were so surprised at how well she was eating, handling the pain and being in the cast and there was no reason for us to stay there any longer if we didn't want. The 2-3 day hospital stay turned into 1 day and we were outa there! Woohoo!
Going home was quite a process. Because of her cast she could not be in a car seat. We had to get a special harness from the hospital to lay her down in the backseat of my car and strap her in. Her feet also had to stay elevated above her heart at ALL times. Thank goodness for amazing nurses to help us get situated and on our way home!

Since we've been home we've set up a mattress in the living room with some awesome wedges from our friends to keep her elevated as she needs to be. We have situated her crib so thankfully she can sleep in there at night. We still give the muscle relaxer 1 time per day, usually before bed, although last night she didn't have any at all. Muscle spasms are the biggest source of pain. But nearly 3 weeks later she is doing well. She wakes at night usually 4-5 time during the first two hours and has blood curdling screams like nothing you've ever heard out of our girl. At first we would run into there as fast as we could to check on her. Now, we've figured out that those screams we think are her forgetting she is casted and trying to move to get comfortable, because her eyes are always closed. Once she settles in she sleeps just fine. She absolutely loves her room and her bed and I am so happy she is able to be in that space that she love so much to sleep.
We are extra thankful for our nurses that take such good care of her each day. We would be absolutely lost without them and they are one of the best gifts we've received this year. They keep our minds at ease while we work during the day, they treat Danielle as if she were their own, they love her, sing to her, read to her, play with her, care for her and snuggle her each and every day. They are a big part of her recovery and for their care we are forever thankful.

We have now surpassed Christmas and area almost to the New Year. I have never for a moment wished away time. I have never for a moment taken any second for granted. However for my family I am eager to get to a new year, we hope and pray for wonderful new beginnings. We have goals to reach, mountains to climb and fun to be had. I would never wish this life that is ours upon anyone else for each day there are moments of struggle, but one thing I know for certain is that in this life that is ours I wish that others feel the love we do for each other. This year has been a challenge. The year started as a challenge before Christmas last year. I was not sure that I was even going to get thru one surgery, little did I know that it would be 6 surgery's for Danielle and one for Dylan before the year would be thru. As much anxiety as I've had, as many tears as I have shed and as much as we have learned to give our heart and allow someone else to hold it in their hand, we have made it thru. I don't know how, but we have. Life lessons are unimaginably trying until you've been there yourself. One thing I know for sure is that we have done whatever we have needed to do for our children this year, especially our daughter. We have not held anything back and we have only put them first. For 2014 I pray their strength will shine thru in the most positive ways possible. Our children teach us more about life each day than the day before. And we are so blessed to have them. From our family to yours we wish you countless blessings in the New Year!