Life with the Knightons! 12/23/2012

Everleigh has been home for two weeks, and those weeks have flown by. We have learned so much in such a short time, and she fills our lives with joy.  Evey is growing so quickly and we are enjoying seeing her beautiful personality blossom. She is a sweet, determined, and fiesty baby. So much has happened in the past 2 weeks that it is difficult to write everything down. Nate and I have, however, been consistently asked several questions so I will proceed to pattern this post as a Q&A post.

Catching some Zz's

Nothing like waking up in your own bed!

Q: I noticed in all of her photos that Everleigh has a tube in her nose. What is it, and when will she be able to have it taken out?

Q: How are Evey's feedings going?

Q: How is Evey's seizure activity? Is it improving?

Q: Do you have an idea of Evey's long term prognosis? What can you expect from her development?

Q: I heard rumors about your family adopting a seizure dog. Is that true, and how does that process work?

Q: How are you all adjusting? Do you need help with anything?

Q: When can I come visit?

Q: I noticed in all of her photos that Everleigh has a tube in nose. What is it, and when will she be able to have it taken out?

The tube in Evey's nose is a Nasogastric (NG) tube used to feed her whatever she is unable to eat by bottle. We will offer her a bottle every meal, and let her eat as much as she wants. Evey has a minimum amount of fluid she needs to take in at each meal in order to continue growing and thriving. If she meets that requirement by bottle, then we don't need to supplement her feeding. If she falls short of her requirement, we give her the remainder of her meal through a Syringe attached to the NG tube. We are so grateful to have Evey home on the NG tube, as it allowed her to come home from the NICU much sooner and also does not require surgery to place. However, the NG tube can be very risky and is only a temporary solution to Evey's feeding issues.  There is always a risk of the tube becoming dislodged and sending fluid into Evey's lungs instead of her stomach, which could cause her to choke or to become very sick. For this reason, we have been given a month to try and wean Evey off the tube and completely on to bottles. If at the end of the month she is still unable to completely feed by bottle, we will be forced to consider a gastrostomy (G) tube, or a surgically placed feeding tube that goes through the abdomen and directly to the stomach. Please continue to pray that our sweet baby will be able to avoid this procedure.  Heavenly Father always has a plan for us and for Everleigh. We will go forward with faith no matter the outcome of this situation, but we make it our constant hope that she can soon enjoy a tube free life. January 7th is the big deadline, and we will continue working hard to have her completely on bottles by that time.

Q: How are Evey's feedings going?

Everleigh continues to be an eager little eater! When she is awake and alert she is always up for a snack. Recently she has been learning to take her medications by mouth, which has been very successful. This is due in part to the fact that her medications are very sweet and fruit flavored, which makes them very appetizing. We joking call them her candy. Often times if she is really hungry around medication time, she will fuss and ask for more medicine because she appreciates the taste so much. We have also tried mixing her meds into her bottles, which seems to help sustain her desire to finish her meal. However, even with Everleigh's eagerness to feed, her best days for feedings have been 68% by bottle and and 32% by NG feeds. These are very encouraging percentages, but not enough to keep her from having a G Tube placed. We still have a few weeks though and will continue to work with her. Evey's biggest roadblocks for feedings at this point are her seizures. Every seizure leaves her so exhausted that once she is asleep, she is almost impossible to wake again until she wakes up on her own. If this is around feeding time, she is almost always unable to wake up to take her bottle and has to be tube fed. On rough seizure days, this means she can miss 5 out of 8 feedings without even being able to try taking her bottle. As her seizures stabilize with maturity, this will not be such an issue. We have found mixed success trying different feeding schedules and trying different binkies and bottle nipples to encourage her to complete the bottles she is able to take. It is our hope and prayer that we can get to 90% bottle feeds by January in hopes of avoiding having a G Tube placed.

Q: How is Evey's seizure activity? Is it improving?

Everleigh's seizure activity continues to be very unpredictable and rather unstable. After having talked with several parents of children with seizure disorders, this seems to be a common experience. It is truly nerve racking and emotionally draining! Evey was discharged from the NICU with a 3 medication cocktail to control her seizures, which at the time, had stabilized her seizure activity for 2 weeks. However after just 3 days home her seizures started spiraling out of control again. We find ourselves stuck in a pretty regular cycle of stabilizing, hitting a growth spurt, metabolizing seizure medications too quickly, losing control of Evey's seizure activity, getting a dosage adjustment, and reaching stability again for roughly 2-3 weeks. We went through this cycle several times in the NICU and continue to experience it at home.  However, our doctor is working with us to do regular medication level check ups to avoid having major spikes in seizure activity. Evey's seizures are also affected by other sources of trauma to the body, such as illness.  Since she has been home, Evey has hit her 2 month growth spurt, received a few vaccinations, and contracted a small cold, all of which have made her seizure activity very difficult to control and leaving her exhausted. Poor baby. We hope that as soon as she starts feeling better we will see some stability in her seizure activity again.

Q: Do you have an idea of Evey's long term prognosis? What can you expect from her development?

Because of the unpredictable nature of brain injuries and the amazing ability of children to rewire their brains through learning and experience, we truly still have no idea of how things will turn out for Everleigh in the long run. We have had some very encouraging experiences that tell me she will amaze us. She is truly a miracle baby and will continue to teach me the power of prayer and faith my entire life. Evey just started working with an early intervention team to try and help her meet some of her developmental milestones and get her limbs moving. They come to rue home once a week, do am assessment, and teach us games and exercises to do with her to help her grow stronger. After just two visits, Evey's arms are having relaxed enough that we can help her bring her hands to her mouth to taste them. She recently has completely rejected her binky, and the discovery of her tasty hands has been very exciting for her. She tries to do it herself, but can only bend her arms to about a 45 degree angle without help. This in itself is a huge victory, as she almost never used her arms with intentional movements until now. She also now searches for our fingers to grasp and uses her fists to play with our hands. Evey is also learning to support her own head! She did it for abut 15 seconds last night, the best I have seen yet. Nate and I have every confidence that even if she has to fight for it, Everleigh will learn to walk, talk, and play like other children do. We will give her every experience and opportunity no matter the time or investment it takes.

Q: I heard rumors about your family adopting a seizure dog. Is that true, and how does that process work?

It's true! We have started the application for a seizure dog for Everleigh. The application process can be pretty intense- there is a ton of paperwork, research, doctor visits, and preparations at home that must be made in order for our family to be approved. But after lots of prayer and conversations with Evey's doctors, we really feel good about getting her a seizure dog. Seizure dogs can sense a chemical change that occurs in the body right before a seizure happens and can alert either the child of the child's parents to come help. Seizure dogs can also provide comfort and companionship to the child they serve. Evey could sleep in her own room and not be afraid. We could sleep easier knowing that the dog would come get us when she was having a seizure. Service dogs are also known to help develop gross motor skills and social skills-kiddos with physical handicaps have learned to walk by holding on to their doggy and walking around their homes. Not many agencies train service dogs for children. The agency we are considering is 4 Paws for Ability-not only do they specialize in Seizure service dogs, they have successfully trained and paced seizure dogs with infants.  4 Paws is a non-profit organization that tries to place as many animals children in need as they can. The process for receiving an animal from this agency is as a follows: Application-Approval-Fundraising-Training-Placement.  Once our application is processed and if we are approved, we can begin the fundraising process. In order to place as many animals as possible, the organization asks that families provide half the cost of training the animal: 13,000$. They encourage families to fundraise to obtain the money for the fee,both to relieve the financial burden on themselves as well as to spread the word about the organization and what they do. We already have some ideas cooking up, including a 5K run with the cost of admission going towards the cause. After the fee is paid, families come to the training facility for two weeks where dogs who have been in training for a year and half are specifically trained and bonded to the child they will serve. Then, you and your new service dog go home and enjoy your lives together! We are so excited for Evey. It will be a neat experience and an amazing blessing for her! Here is the website where you can learn more:

www.4pawsforability.org

Q: How are you all adjusting? Do you need help with anything?

Life has been so wonderful and so crazy at the same time! We are finally starting to feel like parents. I am getting used to 2-4 hours of sleep a day, like I did in college. Evey is on a very strict schedule with her medications and feeds, which means not much sleep for Mommy. Nate takes her during the afternoons so I can get some rest, and I take her at night so he can get enough sleep to go to school. We are both looking forward to Christmas Break! A little more time, a little less stress, and hopefully a little sleep! I figured we would have more time when she came home from the hospital, but really we have less. Evey requires a lot of special care, and her needs come before things like laundry and vacuuming. Once we get the hang if things, Nate and I are going on a date to see either The Hobbit or Les Miserables. Both look really good! Grandma, Grandpa, and Aunt Leah have been learning how to care for Evey so we can have an occasional break. It is much appreciated. Evey seems happy to be home. It is much quieter and we can play, read books, and walk around to look at things as much as she wants. Her newest fascinations are staring intently at the Christmas Tree and having her hair brushed. It's so much fun to see the world through the eyes of a child- everything is so new and exciting again, and life's simplest pleasures become life's greatest pleasures. Eat, sleep, snuggle, sing, read, smile, walk around: life's good. :) Right now our greatest need is continued prayers and support. I know that is what we always say, but we truly can feel the peace and strength that comes from those prayers. Evey's road will be long and hard, but we have every confidence in her and faith in the promises the Lord has made her. 

Q: When can we come visit? 

For right now, I'm not sure. For the moment we are only having immediate, healthy family members visit. Even then, on rough days we don't have any visitors so that Evey can rest.
We have been told that this year has been a particularly bad year for the flu and RSV, and we can't take any chances. Evey has also had some nasty reactions to vaccinations, so we have had to pace the timing of many of them. Certain vaccines, such as pertussis, will have to wait until she is at least year old to receive because they can severely aggravate seizures. The two vaccines she has received have done just that.  Overall, she is very vulnerable at this time and not ready for a public introduction. She will not be leaving the house except to go to the doctor's office until May. At that time, we will be more prepared for visitors. Sorry peeps! We do, however, love to Skype! Find us if you'd like. Our user name is Nate. Knighton.

Thank you to all of you who have sent such sweet emails back. I'm so

sorry if I haven't replied to any of you, our lives continue to be so busy. We love you all and hope you are having a wonderful Christmas season. Thanks for reading up on our adventures!

Love,

Nate, Steph, & Evey