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.
Tuesday, June 24, 2014
I am blown away at Keaton's ability to learn. He is a perfectionist and gives up quickly if doesn't succeed the first time, but usually if we can get him to try something, or if it's a competition, then he is willing to give it a go. For the past two summers Keaton has taken swim lessons. By the end of last summer he was able to "swim" to an extent but not that well and he was using his hands to make him really go by pushing them on the pool ground. This past week he started swimming. He kicks his feet great and makes huge splashes. He uses his hands to "clear the water" in front of him and really is swimming. The struggle he has is coming up for air. He hasn't learned how to tread water so when he is really swimming he has to stand up to come up and breathe. Next week we start individual swim lessons for the season and I'm so excited for the lady to teach him how to tread water and how to come up to breathe when swimming like he does. Last year McKenna didn't do swim lessons. I can't remember why, but I assume she was sick. Our goal for her was just to get her comfortable with the water. She has had such a fear of water that she doesn't even put her face in the water when taking a bath, and she cries if it hits her face in the shower. Then a month or two ago she did it. McKenna put her face in the water in the bath. It was only for a second, but that second has turned into ten plus seconds, and now, if she is in the baby pool and standing, she will put her face in the water. I am so proud of her. This is a huge accomplishment for McKenna! It will be interesting to see how she does with individual swim lessons and I can't wait to see the progress she makes. My goal for McKenna is to get her to tread water this summer. Really just getting her in the big pool will be improvement too but I want the twins to be confidant in their abilities if anything ever happens and they fall in the pool.
This is it, the last week of summer school. I can hardly believe that it is has been a month of kindergarten for the twins. We prayed that they would get Mrs Calhoun after we were told she is the teacher that "pushes hardest" and we were thrilled when they told us she would be their teacher for the summer. McKenna hates school. She usually cries during drop-off, doesn't eat a lot at lunch, doesn't eat much at snack, and doesn't talk or play with other kids in the class. The twins don't sit next to each other in class because the teacher did assigned seating. That actually isn't a bad thing because this way they have each other if they are nervous or scared but they don't depend too much on each other this way. Although McKenna isn't a fan of school, she has participated. She brings home her worksheets and they usually are completed and she has tried to do the work. She has learned to write a few lower cases letters in a different/easier way. She has even started counting clear to 36, and occasionally remembers to say the number 13, which is the number she has always missed since she started counting. Before summer school, McKenna was able to identify all of her letters and write nearly all of her capital letters and most of her lower case letters. It is exciting to see that in the past three weeks she has improved what she already knew and has added to her tank of knowledge. She is talking more and seems to be more energetic at home. She has a great imagination and loves to make up stories while "reading" and has really been doing that more the past few weeks. She plays "teacher" and sings songs she learns at school and pretends to put kids in time-out and discipline them. She brings her stuffed kitty to school daily and when she comes home he usually needs spankings or discipline of some kind. It's adorable to watch. Keaton already knows the academic side of summer school academics. He went into summer school already knowing his letters and being able to write them and writing words. He knows phonics and can sound out a great deal of words and is doing well reading 1st grade level books. He can count to 100 and can add and subtract numbers 1-10. This week he came home and wrote 4+4+4=12. He amazes me with his ability to learn and to retain information so quickly. He is very competitive and all it takes is a challenge and he will try his hardest. The first week of school was tough for Keaton. He wanted to play with a little boy named Kyler that didn't want to have anything to do with Keaton. Keaton asked him to be his friend and the kid said no. The boy told Keaton his coloring was gross and his name was gross. Of course mommy bear came out and I wanted to talk to the teacher, but instead I told Keaton to tell the boy that hurt his feelings and to not talk to him that way. The next day he did just that and the kid didn't apologize but doesn't seem to be causing problems for Keaton anymore. At recess, Keaton plays with Marco, a twin in our neighborhood. They seem to be getting along great and having a lot of fun. Usually when I pick up the twins from school Keaton is asking to go swimming so he can see Marco, who he just said bye to five seconds earlier. So this is our last week of school and Keaton missed Monday and is missing today, Tuesday. I am praying they can go to school tomorrow and Thursday but we will just have to see how they are feeling.
Oh my, we are ready to come up for air and breathe at any moment but just can't seem to catch a break. In May, Keaton had an ear infection and nasty cough that turned into a sinus infection. A dose of antibiotics seemed to kick the cold and he was doing better until this weekend. Saturday morning he woke with a grumpy attitude and acting out of sorts. By the afternoon we were at urgent care with complaints of another ear infection - his fourth since March. The doctor prescribed him the same med he received in May, even though I told them it was the same medicine. Apparently an allergy to Amoxacillin really limits his options for antibiotics. Unfortunately, his cough has worsened and his fever returned to 101 so we took him back to the doctor yesterday. His ear infection has not improved - he has only been on the antibiotic for 36 hours - and his cough seems to be getting worse every hour. The doctor prescribed him a different antibiotic and scheduled us to see an Ear, Nose Throat doctor next month. McKenna did well going to summer school by herself yesterday, since Keaton was home sick. I was so impressed she didn't cry, although the second she got home she informed me she didn't eat her lunch and didn't talk to kids. When we picked her up she was rubbing her eye and there was gunk in the corner that kept reappearing every few hours. Started the eye drops last night and this morning she woke up with her eye stuck shut with gunk. Frustrated that McKenna has pink eye most likely. The drops we have are from last year and expired last month. Would love if they work without having to spend the ridiculous amount to get new ones. It is such a pricey medicine! Today we are suppose to take the twins to the dentist. Obviously that won't be happening. Hoping today with Keaton receiving honey hourly, and his inhaler every four hours, and his antibiotic three times a day he will find some relief from his coughing. Also hoping the doctor doesn't make us come in to look at McKenna's eye. Last time she had pink eye they said to just call next time because it is so contagious. Hopefully they still feel that way. We are ready for a house of healing. It seems the little ones have been sick one month after another.
Tuesday, April 29, 2014
The twins had their five year check-up yesterday and both got four shots in their legs. Keaton hobbled around all night and woke up this morning pretending to limp. Poor guy. McKenna's legs are bruised where the shots are given. I agree it is best to do the shots quickly to help decrease the anxiety, but if you poke the leg so hard it leaves bruises it would be beneficial to reconsider how you give the shot. Sigh. Keaton has had three ear infections in two months so we were able to discuss starting allergy meds for him. He started Zertec last night and we are hoping that will help him. He has a small cough again too which the doctor said could also be from allergies. Keaton is 22% on weight, 21% on height. He is 36 lb and 41 1/2 inches tall. He is a cute little guy and will no doubt climb in weight and height as he grows. McKenna was 21% height, 34% weight. She is 35 lb 6 oz, 40 1/2 inches tall.