Sunday, November 14, 2010

Moving right along...

Danielle has been a busy little girl these past few months! We are now up to having therapy 4 days per week. Every week we see Danielle do something new....and let me tell you, as a parent, there is no better feeling in the world!
November is Premature Awareness Month. All month long I follow different prayer chains and blogs brought to me by the March of Dimes and the Children's Miracle Network. Recently we were asked by the University to be a Children's Miracle Network family for UIHC and to share our story for Dance Marathon 2011. We were very excited and honored. We filled out the sheets and sent in our family's story. We will see what they come back with to us and how we can help this great event in 2011.


It really is such a time in our life that we don't forget, yet, do like to try and put behind in our memory. But still to this day, as a parent of a preemie I really do feel like the NICU was such a huge part of our life and our children's lives, that is where they started and regardless of the situational experiences that the NICU brought to us....we do really owe them gratitude for saving our children so they could be with us today. So this month we are raising awareness for Preemie babies and thanking all of the doctors and nurses who fight every day to save these precious little ones...our little ones.

We have started Speech therapy and I will have some video and pictures to come soon! This is new and we are so excited to see Danielle progress in the area of speech. She only says a few words now on a continual basis and in context, which is awesome! 'Hi' and 'Mama' she says regularly and we are so excited for speech to help her vocabulary and pronunciation grow.
We also have started a new type of therapy called Vital Stim. Have I told you about our most fabulous OT?! She is a gift to our little girl. I mean, we really strongly believe that she was brought into our life for a reason. She started working with Danielle on Visual Therapy just about a year ago, and this has been the most fantastic year ever since we met Lisa. I started asking Lisa about feeding techniques for Danielle when I found out that she also helps kids with feeding. She loves to eat her baby food and for the most part does not have an issue eating, but in talking with Lisa we decided to try this new Vital Stim for a couple of reasons. One being that it will increase Danielle's swallow, she has a fairly 'soft' swallow right now and increasing the thickness of food to ex. table food, would be challenging with such a soft swallow. So we are working on making those tongue muscles stronger to really strengthen her swallow, make it more quiet and help her to control the food that is in her mouth better. And with all of these muscles getting stronger it will also help Danielle with communication and getting out those vowel sounds.
So we do this session 3 days per week for 6-8 weeks, in addition to her other PT, Speech and OT therapy also. So to say we are busy is a bit of an understatement! But Danielle is showing great results in just the 5 sessions that she has had. We have started with a rubber tool to help Danielle get that flavor of food moved around her mouth and also strengthening her 'bite'. So on this tool she puts different flavors such as, apple juice, strawberry shortcake sucker and various pureed foods like applesauce, baby food etc. I took a couple short video's at the end of this week and the progress is very encouraging! This coming week we will start moving back into a spoon and getting Danielle to lick the spoon and move the food around her mouth in order to swallow. We also started getting Danielle to stick out her tongue and try to lick the sucker. It breaks my heart that such eating tasks like licking a sucker can be difficult for Danielle....this is something that most people probably take for granted, yet for her it can be a challenge to work all of those muscles at the same time. But this Therapy will only help those tasks and for this we are SO thankful! So we are in a really good place right now and SO extremely thankful for all of the Therapists that work 4 days a week for our daughter! We finally feel that we have the right 'mix' of people in our life that work for our baby girl! Danielle does not complain one bit and in fact she communicates with our therapists like you would not believe. Signing to them and shaking her head 'yes' or 'no', rolling her eyes even, yep that super fun 2 year old stage is in full gear and we LOVE every minute of it!
Stay tuned for more great steps in the right direction :)





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Sunday, August 29, 2010

2 year update...

Danielle has been such a little busy body these past 2 months since she had her Birthday! We were able to get in for her 2 yr check up and her stats were great. Weighing in at 17 lbs 13 ounces, 31.5 inches long and growing steadily. Danielle is growing in length far faster than weight, her spot on the curve is holding tight, but we are working to have her gain some pounds! She is hungry so that isn't the issue, it is just finding the right mix of food and liquid to get her the most calories to help give her that boost! Now this week we have begun mixing in fresh Avocado's with some of her pureed veggies and boy oh boy I think we've found a favorite! Danielle just LOVES the Avocado, that is perfect because it is very good for her!
We also took Danielle to IC a couple times for follow-up visits. She met with our Odo doctor about her ears. Thankfully he did see the tubes were both in place. This was wonderful news because we had suspected since March that one may have fallen out. Sadly, he did have to suction a bunch of wax out of her left ear. Thankfully Daddy was at this appointment because I am not sure I could have done it alone as Dylan was along also. Danielle was not a happy camper during the suctioning, but it really was clogged and they were able to get it cleaned out and the tube is still in place. Literally seconds after they cleared it and she quit crying she was telling us ALL kinds of stories...so it really must feel better, thank goodness!

We also met with our wonderful Neurosurgeon last week for an MRI and follow-up visit. Thank the lord, things are looking wonderful! Her scans looked the best that they ever have. The doctor always was happy with them before but now his words, 'I can finally accept these I am extremely happy and these are by far the best scans yet.' We were just elated with this news, this means less fluid in her ventricles, her cavity is going down and there is good brain growth. We got the all clear to not go back for 6 months!!!! This is very exciting news :We also got Danielle's 2 yr pics taken at the beginning of August. Kristi Bowers @ Luella B. Photography did an amazing job at capturing Danielle's 2 year moments. She also put together a beautiful video of these pics for us to an amazing song that is very fitting for our family. Enjoy! We continue therapy two times per week, OT (Visual Therapy) & PT... and all is going great. We now have a new PT who we feel is a great fit for Danielle and we are enjoying our weekly sessions. We will soon be starting yet another therapy session with speech therapy. We are on the waiting list. We are excited for this to get Danielle speaking more words. This will be great for Danielle. We had our first evaluation appointment and it went great. Danielle was mimicking the therapist and that was so wonderful to hear. We are working on those first sounds 'P', 'B' & 'M' are the most tricky. Danielle is regularly saying 'hi' and has been for quite some time. Over the past month she has also added 'mama' much music to my ears! She says this mostly when she is sad and fussing.

The lord is closely watching down on our family and our precious daughter! We are so proud of the progress she is making on a weekly basis and we are even more proud watching her work so hard to do the things that she really wants to do!~


The MOST exciting and new news is that.....Danielle has also been starting to walk with a walker during her therapy sessions. This is just adorable and too precious for words. She really has amazed us with her willing-ness to get up and go even after she has just had a full therapy session. We hope to have a walker at home to 'demo' in the next week or so, then we also will order one to keep at home. The second session Danielle took 5 steps, it was amazing, mommy got all teary eyed watching! We are SO proud of her and are very anxious, as she is, to be up and chasing Dylan!



We are very excited for all of the wonderful new Adventures Danielle is experiencing! We are SO extremely proud of her and we learn many lessons from her daily. Dylan continues to be her biggest protector next to us of course, he is very very sensitive to her needs and her wants also. She loves him and loves watching him and listening to him talk non-stop. During story time though it is a battle on who gets to turn the pages. Danielle loves to turn the pages as this is something they do in therapy, well Dylan sure reminds her often that he likes to turn the pages in the book also! Dylan is definitely the best big brother for Danielle and he is very very good with her. We couldn't have asked for a better bond with our kids. LOVE every second!~

Sunday, June 27, 2010

I am 2 today!!!!

to our precious little girl!!!
Neither Brad nor I can believe that our little princess is already 2 years old! WOW, time does surly fly by when you are a parent! We opted for a family day celebration this year, and what a fantastic day it was. Danielle had been feeling pretty icky for the past 3 days or so, and today, just in time for her birthday she was finally feeling just about 100%! We woke up and after we were up and about for a bit the sun decided to shine, it got nice and hot outside and we decided what a wonderful day it would be spent at the pool! So we got our suits on, packed a little cooler and swim gear and we were off!

And look who was the first to greet us....a mommy duck and her little ducklings! We laughed and laughed, all she wanted to do was take her babies for a swim, and all the lifeguards kept doing was shooing them out of the water. Too cute!
Dylan and Danielle were super excited to get to swim in the 'big' pool today! We have our 2 small pools at home that are super fun too, but nothing compares to when Mom and Dad can get in and be silly in the water too!
Danielle just loved the water, it was nice and warm, she didn't even mind the splashing and water spray features, she just blinked her eyes a few times to rid of excess water and was back to kicking and telling us all about the fun she was having!

Today was a great day spent at the pool for our girls special day! We spent a couple hours there and swam our hearts out!
We arrived home and Grandpa Kinney was waiting there for us! He wanted to give the birthday girl some special loves and presents on her big birthday! We sat out on the deck and finished drying off from the pool, soaked up some sun....we love summer time!


They had brought Halen and Roxy along for the ride too and Dylan was very excited to see Grandpa's puppy's!!!
Big brother Dylan was all ready to help Danielle open her Birthday gifts, so both kiddo's piled onto Grandpa's lap for the first round of opening presents! Birthday's are SO much fun!
'Oooh, pretty', Dylan says!
LOVE the Hawkeye outfit, gearing up for football season!
We then ventured inside for some pizza, cake and round #2 of opening gifts!
Danielle really enjoyed her Watermelon decorated ice cream cake...yummy!
And then we tore into those gifts, Dylan was of course very excited to get to help!
We first opened gifts from the LeConte's in Wisconsin!
Danielle was super excited for her new purse and toys!!!
And her new hat and outfit for her American Girl Bitty Baby! Adorable!!!
And Emily even made Danielle some very special handmade hair bows! We put them all in her hair to show them off. Perfect flower to match her picture outfit and bows to wear during football season while cheering on our favorite teams!!
Thank you LeConte Family :)
Next up, her new shape sorter! Our therapist has been working with Danielle to have her drop the shapes in the correct, matching spot. Now we can practice at home too!
And she really loved her talking, singing purse too! Complete with lipstick, car keys, a mirror and compact! Just what every little girl needs!
And stacking cups! Not as exciting....until you stack them all up and 'crash' them all down as we do at therapy! Fun new things to make lots of noise! There was also a couple new outfits to add to the closet, totally necessary for the birthday girl!
'Yum-o, this ice cream is delicious!'
Dylan even thought so too!
Gotta get every last dribble that we can reach with our tongue!
Mmm, now time for a bath!
We had such a wonderful day with our little birthday girl! We are SO proud of you baby girl for fighting, never giving up and continuing to want to learn new things every single day! You are a trooper, the twinkle in our eye and our princess! Thank you Danielle for being you, we are SO blessed to be your Mommy and Daddy! We love you SO much sweetheart, we hope you had a wonderful 2Nd Birthday and we hope that ALL of your Birthday wishes come true!!

Sunday, May 16, 2010

This story melted our hearts...

A news anchor woman and her husband have sure gone thru quite a lot for their miracle baby boy. We saw this story on the news last night and in some ways it does hit close to home. Danielle also has Hydrocephalus, which is one of the reason's for her shunt. As we can relate to these parents, we go to great lengths for our children, all children are miracles and you just have to believe!


http://abcnews.go.com/WN/Health/medical-bills-mom-finds-resources-cost-care/story?id=10657084


In reading the comments from parents in similar situations, hearing scary things from doctors about the medical needs of their children, we remember that we continually must be strong! We go on and continue to be optimistic that we will prove them wrong! Children have a miraculous way of touching our hearts.
No matter how many times we take Danielle to therapy each week, how many times we need to leave work for appointments, no matter what the cost is of anything she needs, only one thing matters at the end of the day....that she is with us, we are home together doing everything in our power to help our little girl every day of her life! She is doing great and for that we are SO blessed! We see her smile, the twinkle in her eye, her little giggle and her greeting us by saying 'hi', we will never give up, our precious baby girl is our life, our children are our life. We fight for the best doctors, the best medical care, the best therapists for our little girl and for those people who help Danielle on a daily basis, those whom we are fortunate enough to have in our lives...we are SO thankful!
Meet Lisa, she is our most favorite therapist EVER! We love her and ALL she does for our baby girl!





"Miracles happen every day, change your perception of what a Miracle is and you'll see them all around you." Jon Bon Jovi


We are so happy that the parents in this article also continue to fight and pray and give their little boy the wonderful life that he deserves! After all.....that is what the wonderful gift of parenthood is all about ;)

Sunday, May 2, 2010

Spring Checkup....

Last week we took Danielle to IC for her MRI and check-up with the Neurosurgeon. I was a little nervous because this was also the first time that we needed to take Danielle's earrings out because she couldn't have them in for her MRI. Well that was no issue at all. Danielle did great, didn't even flinch and her pretty little ears with earrings continue to look great! Danielle did extremely well for her MRI. She did not have to be sedated which again, is a blessing in itself. Normally we have a few of the same MRI techs, this time it was a few young men. Mommy was nervous that they wouldn't get her tucked in just right, but after a few pointers from us as to what Danielle prefers, she did great. She didn't even let out a peep, we didn't have to hold her hand or tap on her leg as we usually do. This big girl did great!

We met with Dr. Menezes for the results and re-programming of her shunt. Dr. Menezes is the most fabulous doctor for Danielle. Is is truly the best and every visit we have with him reminds us of this! He asked us what Danielle is doing new and different, how she is eating and sleeping, acting and how vocal she is. We revealed to him the new 'things' she is doing. Little things that she probably could not have done back in December without assistance, that she is now doing on her own. He was very happy and what we told him.....conveyed also what her scans showed. They looked great! There is less fluid in the brain cavity and the cavity is going down which is wonderful.

So we got the all clear to not go back for another 4 months. This is wonderful news. We have the whole summer without having to go to IC except for her eye exam. He encouraged us to start giving her more table foods to help pack on some more pounds. She is gaining length in huge strides, while her weight is increasing slower. So although this is new, we will be experimenting with new foods for Danielle. She is already eating yogurt for breakfast, baby food for lunch and dinner but we are going to slowly take away the baby food and add more table food. She is still taking a bottle after each and every 'meal', we will continue this for extra calories and vitamins and also nutrition! We have been adding Vitamin D milk in with her formula and occasionally some Vanilla or Chocolate Carnation Instant Breakfast....which of course she loves! So we were very happy with this visit!

Uncle Chase is home for the summer and the kids really enjoy his company...and so do Brad and I! He gets on the floor and gives each child lots and lots of snuggles and play time and the just eat it up! We are very happy to have him staying with us for now and being able to see Chase frequently this summer!!!
Danielle and Daddy are back in another session of Aqua Tots with our dear friends Kirsten and her hubby Mike and their daughter Lila. The Daddy's and girls are having a great time and us mom's really enjoy chatting and watching too. This session is also at the exact time as Dylan has his lessons, so one side of the pool is Dylan and straight across are the daddy's and girls. It works out great! Danielle and Brad have a new instructor. This lady that teaches the class also brings her little boy to partake in the class also. This brings a whole new variety of songs and games as the instructor is truly joining in the learning with her little one also! So we are enjoying our lesson time!
That is a great back float peanut!!! The girls love to sing songs!!
This weekend we had a big play date with the Eddins' and Hahn's and the kids. The kids played, we grilled out and enjoyed the nice afternoon sunshine out on the deck. We had a wonderful time with our friends and letting the kids be kids. The 3 little girls on the floor playing is such a wonderful sight. Danielle and Henley were sharing the play yard and all of a sudden we looked over and Danielle's foot was in Henley's mouth and she was sucking on it! SO funny, kids will be kids right?! Dylan enjoyed the company of his friends as well!








We are excited for the month of May. Lots of fun things coming up and we have started planting flowers around here to add some color to our landscaping!! This is one of our favorite times of year....sunshine warming our hearts, bright colors galore; from green grass to blooming flowers, and chirping birds.... reminding us of all of the beautiful nature around us!~