Tuesday, August 19, 2014

Delaney's feed tube remains out!!

Just over 2 weeks now and Delaney's feed tube remains out. Delaney has only lost 1/2 pound over the course of 2 weeks. A huge accomplishment for Delaney considering she has not eaten on her own for almost a year. Delaney is working extremely hard to try and eat, and every meal or snack is very challenging for her. Mommy and Daddy are right by her side encouraging her in every way, however, it is very stressful and an extreme amount of work, as we can not help but count every calorie, weigh every bite out in grams, and track all of her liquid intake. By doing so we hope to have the best understanding as to where she is getting the most of her calories or how to make up calories when she is lacking them. Also it is to continue to keep the feeding tube out. Delaney is still currently taking zofran an anti nausea medication twice per day. We have begun to taper this slowly so that she may be completely off medication in a few weeks. Delaney continues to be very active and happy. She has had more opportunities to go to the park and go swimming. Which we guess the pool feels good for her since she continues to regain her ability to walk. Delaney will not be weighed for week, unless there are some drastic changes in her eating and drinking habits. Thank you for all the prayers, love, and support. As always.... GO TEAM DELANEY!!!

"And though she be but LITTLE, she is FIERCE!"

Thursday, August 14, 2014

Delaney's progress continues....

It has been 8 days since Delaney's feeding tube was removed. Mommy and Daddy are thrilled to say the feeding tube remains out. However, it goes without saying that each day is a challenge, and a lot of hard work is put into each meal and snack. If you were to name a food or drink we can almost guarantee we have tried more than once and in 3 different ways. We have established a few "go to" foods and those include Danimals, yogurt, chocolate milk, juice boxes, grapes, Cheerios, and BBQ chips and all other food is hit or miss through out the day. There is a constant balance between re-affirming the consequences of not eating and encouraging and supporting each and every bite. Mommy and Daddy trying to make more time for Delaney to venture out but the fear of serious infection has been so deeply ingrained in us, it is a way of life that is not easily changed. For example when Mommy and Daddy took Delaney to park, Mommy essentially disinfected the entire play structure where Delaney was playing and where her hands would touch. It sounds unreal but we have had to live that way, even under our own roof for the past 11 months. As with everything that we do for Delaney it is a means to and end, a healthy happy child. Delaney remains happy, active and full of love. Thank you for all the prayers, love, support. As always...... GO TEAM DELANEY!!!

"And though she be but LITTLE, she is FIERCE!"

Saturday, August 2, 2014

Enjoying Life.....

Delaney has been enjoying the simple things in life. Little things she has not been able to enjoy for the past 10 months and 23 days. Delaney has been able to take a handful of baths which she loves doing, at the same time Mommy and Daddy can see the look on her face, and it is as though she is playing in water for the first time again. All week long, little miss fierce, Mommy, and Daddy have been working hard on her feeding therapy, removing some of her formula through out the day in order to make her hungry. Then begins the work to try and get Delaney to eat or drink food on her own. She is doing well, Mommy and Daddy have been able to remove 1 formula push each day, replacing it with chocolate milk or milk. And tomorrow, Sunday, Delaney's feeding tube will be removed once again, to give her a break, allow her to have the sensation of eating without the hindrance of a feeding tube, and to continue to work on her feeding therapy. This week Delaney will have a speech evaluation to see if she has any set backs from the brain operation, chemotherapy, and or radiation. Delaney has ventured out of the house a few times for couple hours for walks, playing with the water hose, and recently to see just one of the many events people have come together to support her in her fight. Thank you. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!

"And though she be but LITTLE, she is FIERCE!"

Dressing Removed and Big Next Steps...

Today, after 5 days, Delaney was finally able to take off the dressing the surgeon applied after he removed Delaney's broviac. Her site is healing up extremely well, although she still has skin discoloration about 4"x6", due to the chloraprep (used to help reduce bacteria on her skin that would cause infection) and the weekly dressing changes. But we know her skin color will return in time. Little Miss Fierce has been able to play with water once again. With her little brother Merlin, she was able to play with a water gun, water balloons, and simply play with water in a small bucket, without worry. It was so nice to see such a simple act of playing with water, bring so much joy. And finally, after 11 months, Delaney can can take a bath, a shower, or go swimming again. Her eating and food aversion have remained the same, but Delaney works hard everyday on her food therapy. Delaney's intense physical therapy is beginning once again, now that she has overcome some big hurdles this past month. Delaney remains in good spirtits and and is enjoying regaining some of her freedoms of a childhood agin. Thank you for all the prayers love and support. As always... GO TEAM DELANEY!

"And though she be but LITTLE, she is FIERCE!"

Successful Surgery....

Both of Delaney's procedures went very well yesterday. Delaney's Broviac was removed and she had a lumbar puncture. Mommy and Daddy waited in the waiting room and then shortly after her surgeon came out and told us everything went well. He said he literally pulled the dressing off and the Broviac came with it. Now that the Broviac is out if Delaney spikes a fever she can be treated as a normal child, there is no risk of a central line infection, which would mean an ER visit and admission to the hospital until antibiotics are given and the fever is gone. Another huge close to a chapter in Delaney's story. Delaney is very happy that her Broviac is gone and she is so proud to show that they are gone! Thank you for all the prayers, love, and support. As always.... GO TEAM DELANEY!!

"And though she be but LITTLE, she is FIERCE!"

Surgery Fierce Friday!

Delaney will be heading to Oakland Kaiser with Mommy and Daddy this morning for the surgery to remove her broviac line. This will be a huge accomplishment and the close of just one more chapter in this long journey Delaney has. We are so proud of Delaney and how far she has come.

Thank you for your continued support, prayers, and Love for our sweet Delaney.

"And though she be but LITTLE, she is FIERCE!"

Wednesday, July 23, 2014

Last Broviac Dressing Change Complete!

After 10 months and nearly 60 Broviac dressing changes, Mommy and Daddy have completed Delaney's last dressing change. Little Miss Fierce is scheduled to be at Oakland Kaiser this Fierce Friday at 745 am, to prepare for yet another sedation to remove her Broviac, and receive another lumbar puncture. Mommy and Daddy are so proud of Delaney, for each and every week that she was so calm and patient to allow Mommy and Daddy to do such a complete and through job, keeping her site clean. After 10 months, being neutropenic (a severe risk for infection) weeks on end, and constant dressing and cap changes Delaney never once had a central line infection and for that we are so grateful for. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!!!

"And though she be but LITTLE, she is FIERCE!"