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New Date Confirmed..,

We were notified last Monday of a new date for Danielle's surgery, but it was not confirmed 100% until this past Friday. I had great anticipation all week, fearing that something else would come up. Thankfully it didn't. It was very ironic when we were having lunch on Friday, just my hubby and I, that we got the call when we were together. It was all in God's timing.
Friday, February 22nd is the date of surgery. It was very much a relief to have this date be just a few weeks from now....and not months. We want the best for our lil peanut, yet we are also again, very much ready to move on and put the day of surgery behind us.
It was one of my very best friends who shared with me what this date meant.....
It's three 2's.....222. Anytime three numbers are repeated it is a master number."Have faith. Everything's going to be alright. Don't worry about anything, as this situation is resolving itself beautifully for everyone involved."

I hung onto those very important words all week long as we awaited confirmation. Now, as I have done some more research into the significance of number 22 it has become even more clear why we were rescheduled for this date. Here is a little glimpse into what I have found.

22 is considered the most powerful of all the numbers. Those with a Life Path number 22 have great spiritual understanding, and ability to apply knowledge in a practical way and achieve enormous success.
It can take someone with this number well into their adulthood before they manifest their dreams because they have to go through trials, and learning experiences before they mature enough to incorporate their true calling in their life

It's not easy to go through life thinking of yourself as a teacher. You are one, whether you like it or not. You will influence people just by being around them. You are not teaching behavior or something concrete. Teach peace of mind and contentment in the present. Teach by example... 

It wasn't until now that we fully excepted this and put the understanding at the forefront of our minds. Do the above statments so very clearly identify our daughter 100%?! Wow. It seemed so unbelievably devestating to recieve the call that Thursday morning saying they were rescheduling surgery, yet now there is so much more that has fallen into place. It really was just a minor 'date' setback, we are so much more content now than ever before, the reason now is perfectly clear. It really, truly is all in God's timing. We totally believe that.
We do not have a surgery time yet, nor do we have any more specifics than we had before. But it is ok, the 21st at our pre-op appointments we will find out that information.
Until then, our time is spend cuddling, smiling, laughing and soaking up every single bit of our girl!~

 

Cherish this time....

Something to remember and never forget as the road seems so narrow and the air around you so thick. Parenting is a challenge yet also life's most rewarding gift. There are heartaches, tears, smiles, giggles and none of this you could even imagine before you're a parent in your dreams greatest wish. For each day we need to remember you won't be this small for long, parenthood is not a race nor a sprint .....it is a journey we face, and no parenting way is neither perfect nor wrong.

 

A large part of our weekend has been spent soaking up time together. I've caught myself watching the clock thinking we would and could now be 24 hours post op. It's been hard to imagine how it could all be behind us now, yet it was not in God's timing to have it behind us. We are still anticipating and while we have been able to calm our anticipation a little and enjoy this very moment we are in, when it is quiet and I am reflecting all of those feelings come flooding back in. We are enjoying today, now more than ever. When either Brad or I is holding our girl she literally melts right in, curls up on our chest and shows a big pucker lip when we put her down. This week will be a little difficult as life slowly goes back to how it was before, we are still anxious to get that date on the calendar so we can move forward even more. 

Postpone....

Postpone.....the word that seemed to turn our world upside down. 6 1/2 weeks of anticipation came to a screeching halt on Thursday morning, literally 5 minutes before we were to head out the door to our pre-op appointments.
Backing up to Wednesday afternoon....the Anesthesia nurse from the U called to go over Danielle's health history the past few weeks. I had to tell them of Danielle's recent bout with RSV. I made sure and told the nurse that she was cleared by her Pediatrician on Monday the 28th. She was totally fine with it and we moved on.
Thursday morning my phone rang. It was our doctor's ARNP (Nurse Practitioner) she was regretting to have to inform me that Danielle's surgery must be postponed. My initial reaction, 'WHAT', 'NO WAY', 'HOW CAN THIS BE', 'WHY'? I had SO many questions. She informed me that the head of Anesthesia went down that morning and spoke to our Neurosurgeon directly and informed him of her concerns putting Danielle under after her recent RSV diagnosis. Our Neurosurgeon relayed she had been cleared by our Pediatrician and since she was cleared he was ok proceeding with the surgery. The Anesthesiologist said, 'NO'. Their ' policy' is she must be clear for a minimum of 4 weeks after she is cleared before they will put her under unless it is an emergency. I was LIVID. Mostly LIVID because we were walking out the door and shouldn't the Anesthesia nurse have told me this yesterday or more so checked into this after the information I gave her on the phone maybe should have raised a red flag? I was so mad that the ARNP directed me directly to Anesthesia to take it up with them.
Sure enough I got the exact same doc on the phone who had met with our Neurosurgeon that morning. To say that she was rude is quite a bit of an understatement. I went rounds with this lady on the phone for a very long 10 minutes. Words that came out of her mouth were EXTREMLY inappropriate. I kept saying, 'we are coming down for pre-op appointments will you PLEASE just examine her before you make your final decision to halt surgery.?' and no, NO was the answer I kept getting. I was devastated.
Not only did we have to relay this news to our family who was planning on starting that very DAY in caring for Dylan, but we had to relay this information to our daughter and try and make sense of it ourselves also. We obviously want the VERY best and only the best for our daughter and we NEVER would want to risk anything at all. But let me tell you 6 1/2 weeks of anticipation, planning, nervousness, tears, worry, fear and more planning all went out the door. It sucked. Brad and I both were emotional basket cases. I had to come home and collect myself and calm my husband before I could even think about returning to work. Not to mention explaining to our little Dylan who was looking forward to over a week with Grandpa and his Holub Grandparents and Uncle, just why he wasn't going now. He took it surprisingly well and is excited to do that again very soon.
SO, this further complicated our care plan as far as daycare, school, therapy, in home nursing care, our job schedules etc. It is what our daughter needs and 'begging' for her to have surgery today really sounds funny and a little bit selfish I realize. But here is the deal, Brad and I have had a lot on our plates. Our children have had a lot of anticipation themselves and to tell your child in the first place they are having brain surgery is NOT a fun conversation to have. And then when your child fully understands you but she can't communicate to you to ask the questions we know she has.....it tears your heart out and rips it to pieces. Then to tell her, just joking baby, no surgery today?? What 4 year old is going to understand that? Our heart is breaking and we are SO ready for our daughter to be able to just...be...a....kid.

We want her to no longer worry about an upcoming surgery. We want to get her thru it, get her to healing and help her live the most fantastic life with her new body. Instead we have been postponed. Today we have accepted it and are making the best of it by trying to get more in place for our girl. In Home Nursing care is a big deal and so is meeting the people that will care for her. So next week those meetings will take place.
I was hoping to have a new surgery date as of today, that did not happen. The surgery scheduler is trying really hard to get Danielle in before April, which is technically her surgeon's next available surgery time. He prefers to not do surgery's on Friday's but she is working to get us in at the end of February, very beginning of March. So now we wait, patiently. We take advantage of this time with our girl, trying extra hard to keep her healthy in order to prevent further set backs. We remain strong for her and continue to thank god for each day. We are truly blessed and even though yesterday seemed like one of the worst days of our life in a long time.....we sat back and realized, no, this isn't bad, it is happening for a reason. We need to learn to calm our anticipation even tho it is so so hard.
So hopefully Monday we will have another update, a positive one, at that, with a new date to mark on the calendar, a date to get thru and move forward with our beautiful girl. Please pray for our sanity, I am fairly certain that we need it :-)

Courage....

Our little peanut has more Courage than I can even explain. The feeling that she has one of the biggest weeks of her life coming up, to her, is nothing that will keep her smile away. As her parents we look at her on this Sunday morning and smile at her smile, yet in the back of our minds we are scared. It has been our commitment from the minute I knew I was pregnant with her that we would not share with her our feelings of worry. Even in the NICU, we never spoke of anything that was not positive in front of her and to this day we have maintained that commitment to our daughter. It takes a lot of Courage on Brad and I's part to be disciplined enough to keep this commitment. Yet she is not able to explain to us if she is scared, worried, or if she is content about her upcoming surgery. But she still keeps a big smile on her face, masking any fear she may have......our daughter is the MOST Courageous person that we know. We are SO blessed. There is so much to be learned from her.

This past week we received Danielle's iPad from school. It is set up with the Proloquo 2 Go program, which we have been using at therapy as her 'communication' device. This program is flat out AMAZING! We are SO excited to finally, now have it at home to use with her as well. Danielle fully knows this device and as she learns to speak more words thru her verbal language, this will assist her to get those thoughts communicated thru us. Last night I sat down and personalized our family members, there is so much more to personalize and over the next week during the time I am watching my girl heal, I will be working on this as well! Here is a little sneak peek and quick demo!

 

We are very excited to be using this device on a daily basis. Every member of our family will be using it, even if Brad and I are communicating something simple to each other we will be using it as an example for Danielle. The possibilities are endless!

This week has been a busy one for Danielle. The week began home with Daddy on Monday for the Holiday, Danielle has begun an icky cough so it was a perfect snuggle day for them.

Tuesday Danielle's cough was progressively worse. As a kiddo who HATES to cough, we knew when she was coughing profusely during the night that something was going on. We headed into see our most fantastic Pediatrician. Sure enough the verdict was RSV. UGH. This was very surprising to us because she had not had a fever or anything, just decreased appetite and this cough. Sure enough we were sent home with breathing treatments every 4 hours for the next 5 days. There is no antibiotic for RSV, just the nebulizer to keep that cough loose and those air sacs in her little lungs open.

Even Dylan is a big helper lending his bed for the occasional treatment in his room and even holding it for a brief minute while Mom tends to something else quick.
Brad was also out of town this week so it was Mommy duty 100%. We managed and after a couple of stay home days with my girl she seems to be a little better. Neither of us want this surgery postponed so we have tried to keep her away from any other germs etc so she gets better fast. Tomorrow is a re-check that we hope brings good news.
    Wednesday during our stay home day, our RN Case Manager from the Home Health Agency we are using after surgery came and did Danielle's admission paperwork. It was a LONG 3 1/2 hour appointment at our house. But it was very nice to be able to meet the Case manager in charge of the RN who will care for Danielle. We have 45-60 hours of in home nursing care set up after surgery for Monday thru Friday. This will be a BIG adjustment for ALL of us, especially Danielle. But after our meeting and being able to speak with this lady for a decent amount of time I began to feel much more comfortable with the idea. It will be an RN or LPN that will be caring for her, NOT an aide much to my surprise but I was very happy to hear it will be a skilled nurse. This week we will be meeting her actual nurse and we are very eager to meet this person and are praying like crazy she is the right mix for our daughter.
As I feel we are on a bit of a journey we do not want to have any road blocks get in the way of our ultimate end in sight, helping our little girl grow and develop more than ever after this surgery. It is going to be a week of anticipation this week. Today Mommy's nerves have begun to put a pit in my stomach but we will tread thru. Anything for our little girl. We will find our Courage for her.

Moving Forward....

2012 brought many new and exciting things for Danielle. Not only did she turn 4, but that also meant a whole new world she was embarking on......Pre-School!!!
         In August Danielle started her first year of Preschool at Bowman Woods, she is a Little Lion now! This was QUITE the step for Mom and Dad, not only was our little girl growing up, but we were also allowing her to enter into a whole new world filled with new people and most of all, new caregivers. With careful planning put into place Danielle began her first year of school and it went without a hitch. The school has many of the same pieces of equipment there for her like we have at home which makes for great transition and for her to feel comfortable. They have the same Special Tomato chair we have at home, as well as the same walker and also a Tumble Form chair so she can sit on the floor with her peers. She has 3 Grant Wood therapists on her team which come in and each visit her once per week plus we are still continuing therapy at Witwer with our 3 most fabulous therapists there as well. Danielle also has her own personal 'aid' caregiver at school too. Ms. Vette goes everywhere with Danielle, cares for her and makes sure she has exactly what she needs during her school day. She feeds Danielle and makes sure to give her a break from the other kids if she needs it. She is proving tho to handle all of her new friends with no qualms whatsoever. She LOVES school and most of all she loves her new friends and her friends love her too! All of the kids are SO attentive to Danielle and so are the other parents. We always get greeted with big 'hi's' when we arrive and big 'see you later's' when it is time to go. Danielle's face just lights up when some of her bestest buddies talk to her, she is so smart and knows exactly who they are too!

     School has brought so much out of Danielle that she has been trying to communicate to us. It is amazing each week to watch her in therapy show us new things that she knows. From colors, to animal's to shapes and even writing the letter 'D' with very minimal assistance, she amazes us daily. We are so proud of our little Pre-Schooler and are so excited about what great things she has in store for her at school.

We continue tho to watch Danielle's progress very close. School has been a big factor in us watching her Cognitive skill set and to see her moving forward with such huge strides has been amazing. Although it has taken the past several months for her Educator's at school to 'figure' Danielle out, we are still seeing tremendous progress and we really attribute some of that to her fantastic Witwer therapists for challenging Danielle each week and giving her that opportunity to show us what she knows. While her Cognitive skill's are rapidly increasing, we have been really monitoring her Fine Motor skills as well.

6 months ago at our regular Neurosurgery follow-up, part of her protocol is MRI scans to monitor change. We have seen good brain growth in the top part of Danielle's brain, which goes hand in hand with the Cognitive progress we are seeing. While we are seeing Fine Motor progress, it isn't as rapid as one would have thought. Her scan did confirm a large cavity of fluid in the 4th Ventricle in the back of her brain. This fluid has been there for a very long time, since she was approx 2 months old. Now she does have a shunt on the right side and it is doing its job of draining the fluid from the top part of her brain, but it is important to know it does not control the fluid level from the back of her brain. This large cavity has not increased nor decreased in size since she was approx 2 months of age. Good that it is not increasing, yet a little discouraging that it has not decreased either. Our world renown Neurosurgeon asked us to really evaluate Danielle over the next 6 months to see if her progress was what we would expect. That put a LOT of pressure on Mom and Dad, but only the best for our little girl, and this was very important.

December 21st, one day before Brad's birthday, and the same day we were getting in the car to travel 13 hours to PA for Christmas, we had a follow-up at the U, which included another MRI. Brad and I had really done some soul searching asking ourselves if Danielle's Fine Motor progress was what we wanted and should expect. She was progressing, but sadly we had to report to the doctor our findings. He knew by looking at her, we didn't need to say a thing. Her head control is about the same, lacking, and her posture is better but still not sitting longer than 30 seconds unassisted, taking steps yes, but no more than 4 at a time. The news was devastating, yet we want the best for our daughter and we want her future to be bright and we want to KNOW inside our hearts that we have given her every single opportunity possible to have the best, life, ever.
Surgery is the only hope. Our doctor is the BEST in the world and he suggested he place another shunt on her left side to drain the fluid from the base of her brain...... we accepted.

A pit is in our stomach as this is serious. There are risks, serious risks, after all it is Brain Surgery that will last 4-5 hours in the Operating Room at the University. She will be in the hospital for one week post op, and cannot attend school or daycare for at least 8 weeks, possibly longer. February 1st 2013 will mark the day that our little girls life will move forward.....
Stay tuned as we embark on this journey of endless possibility for our little girl. We have her under the care of the very best Neurosurgeon in the world, and I am not just saying that either. I will share his name another time. While there are serious risks, we believe in our heart that Danielle will begin to see the ever so bright future that is waiting for her, and this is the beginning of more endless possibility for her. It will be a marathon, not a sprint. We are ever so ready to Move Forward....
We love you SO much Danielle. There isn't anything that your Daddy or I wouldn't do for you. We want you to know we are doing this for you, we are putting our hearts in the hands of someone who wants for you as we do. We love you sweetie, you are our world, we will be beside you every single step of the way, forward progress has begun.

4 years of pure joy!

Sweet girl how can it be that you are already turning 4 today?! You have taught us more about life and love in the past 4 years than we could have ever imagined! We wish you the happiest of Birthday's ever and we hope that this next year brings you nothing but pure joy and the most memorable of new beginnings as you begin such a fun stage in your life as you begin school!Happy Birthday to the sweetest, most loving little miracle we were blessed with....our daughter! We love you Danielle and hope you had a very special day today!

We are very blessed to have you as our girl!