Monday, July 28, 2014
YES, that's a title in all caps because I am so excited to announce McKenna is finally making progress. October 2013 marked two years of no improvement to the formula feeds. By improvement I mean no decrease to her tube feeds. We saw her GI in January 2014 and he told us to attempt slow tube decreases on our own and if she doesn't gain weight then just increase her formula to previous quantity. He also told us to attempt decreasing her meds (ones to prevent retching) and if she starts having problems then just start the meds back up. He made it sound so simple and easy, but with the road we have traveled the past five years we know better then that. We started in February decreasing one of her meds that has the worst side effects with possible heart issues. We were able to decrease it by 1/4 but haven't been able to decrease it any more due to coughing with the decrease. We will decrease that med more as her formula feeds decrease or stop. April we did our first SUCCESSFUL tube decrease in 30 months. We were able to bring her down from 1 1/2 boxes of formula to receiving only one box of formula. She did it. She maintained weight and even gained weight. She didn't appear to have any positive side effects, but it sure did effect mommy in a positive way. It was a great reminder that God is watching over us and He still is in control. July 3 we did another formula decrease and today McKenna is only receiving half of a box of formula (approx 13% daily caloric needs). This is amazing and such a big step for McKenna and our family! She will remain at this quantity for another few months. The twins start school in August and we need to see that McKenna can gain weight while at this quantity and while attending school before we will attempt the final formula decrease. McKenna can't use her feeding tube for three months minimum before the doctors will take the feeding button out. While we are doing well on formula, we do still need her to drink too. She is about 70% fluid fed through tube still each night. Mommy's timeline is never what God's is (hahhaha) but our goal, if McKenna gains weight, will be: October final formula decrease November attempt to quit the meds November work on fluid decrease through tube We are so grateful for those that have continued to pray for our micro preemies over the past five years, and for all that have jumped on board with prayers along the way. We are blessed beyond measure and so grateful for every blessing God has give this family and can't wait to see how He uses McKenna and Keaton's stories to change the world. Thanks prayer warriors!
It is so amazing to see the progress the children make weekly with swimming and gymnastics. Due to the weather being cooler and our pool not heated, they have only had two swim lessons this summer. Keaton aced the first lesson and did even better the second one. He struggles to listen and to follow direction. He loves to lead and often it gets him into trouble to not wait and find out the task. Swim lessons is no exception for him. He kept going under water when the coach was trying to instruct him, or blowing bubbles and kicking instead of listening. He managed to make it through the full thirty minutes though and the second lesson she worked on Keaton floating on his back. Mainly though she works on getting him to breathe right and do big arm strokes. McKenna didn't cry once during her second swim lesson. I am so proud of her as this is a huge improvement from a few weeks prior. She is now standing on the bottom step in the big pool and even walking on it. The coach was able to get McKenna to get swim toys off the bottom step of the pool even. She worked on arm strokes and breathing with McKenna, which is so much further then I thought she was able to get this year. Gymnastics Keaton is doing flips on bars, with help of course, and running on the balance beams, and doing cartwheels, and summersaults and all kinds of activities. Again he struggles to listen. He races through the steps so he can be first in line, first complete the task or just so he can yell out, "I won." I love his competitive spirit but will for sure struggle getting him to concentrate and follow through. McKenna hasn't been crying at gymnastics lately and participates in all areas, although she doesn't do all the steps. This week on the bars she got up on the smaller bar and stood to swing on the higher bar. This is HUGE for McKenna! She can't do flips on bars because her feeding button but she can still swing on them. She does the trampoline well as long as it is not a seat-drop. Two weeks ago she finally started doing the balance beams without any help. She still only does it sideways and won't walk on them one foot in front of the other, and it takes her forever to cross the beam, but she does it.
Can't believe after five years of sleeping at home with us, the kids slept at grandma and grandpa's house for the first time. Keaton has had the opportunities to sleep there or hang out there alone with all of McKenna's hospital stays, but McKenna has never been away from mommy overnight since NICU. They did great. They played the iPads and WII, and ate and loved staying with grandparents. McKenna didn't have her feeding tube all night, so she was pretty dehydrated and very bloated the following day, but that's a small price to pay for such a great memory. Daddy and mommy went to get massages and ate at Dublin Pass - yummy irish food. It was nice to spend some quality time together and get to do whatever we wanted for a night. Grandma is already planning the next stay.