7 Months--Making Progress

This is the 1st night in two months that our kids got to bed before 9:00pm. We wanted to make posts many times but we've been busy living in the moment with our kids. We've had a wonderful summer making memories with many of our family and friends. It's hard to believe that today is the last day of Summer Break for us, and school starts tomorrow. Many thanks and hugs to all of you who visited with us, invited us and helped us get out (as we get out much easier with the help of others), and made us meals. We are overwhelmed with gratitude and love as we reflect on the many things that were done for us by all of you, our friends and family. We love you dearly and appreciate everything very much.




Koby is now seven months old. He's getting bigger!

Two months ago Sharalee left for 6 weeks to Utah. It was wonderful to be around family and friends there, and they spoiled not only Koby, but all of our other 5 kids. At five months he was 11 1/2 pounds, and he has now reached 14 pounds. It has taken considerable effort to gain every ounce, but it is paying off. He's gaining weight and milestones with momentum now and we are amazed.




EATING UPDATE: He is still being fed through his G tube (directly to his stomach). So he hasn't learned to suck, and our therapist believes there is little chance of him learning to suck at this point. He lost his reflex to suck which most kids lose around 6 months when you can begin to introduce solids. We still have the goal of getting him off his G-Tube and we can do this through teaching him how to eat using sippy cups, straw, and solids (baby cereal and puréed veggies & fruits.). While this is a bummer, we will continue to try to teach him. He does suck a little bit every now and then, and when he shows interest we still let him practice using a binky. This promotes familiarity with using his mouth. The cupping shape he creates with his tongue to suck on the binky is the same shape needed to use a spoon to eat.




Koby is up to 105ml per feed, which we've slowly increased to each week. When he left to Utah two months ago he was getting 90 ml per feed. We feed him through a pump most of time, and mix in a few gravity feeds each day to give his tummy a more realistic feeling to eating a meal. A gravity feed fills his tummy quickly much like the feeling he'd get if he were to drink from a bottle or nurse. He eats at approximately 7am, 9:30am, noon, 3:30pm, 6:30pm, 9:30pm, and midnight. He is spitting up much less and we attribute this to his medicines since he still shows sign of reflux. Feeding and gaining weight is critical to his development so this is good news.

VISION UPDATE: There has been HUGE progress with his vision. He was barely starting to track with his eyes two months ago. Now he looks around most of the time. This has brought us a lot of relief and excitement. Keep in mind that even two months ago we weren't sure if Koby would react to anything around him, as he mostly stared off in the distance and didn't have reaction to his surroundings. When he hears noises he tries to move his head around to see where the noise is coming from. We are still working with him to strengthen his neck and as it gets stronger he does better at looking around. Koby's eyes will cross from time to time and though it's as cute as can be he will be seen by a pediatric ophthalmologist later this month to confirm what's going on.








HEARING UPDATE: Koby is reacting more and more to noises, but the biggest challenge has been his growing ears:) Babies experience big growth in their ears during the first year, which means the audiologist has to make new ear molds for his hearing aids every couple of weeks. This made the six week trip to Utah tough as his hearing aids wouldn't stay in very well because they were outgrown very quickly. Koby gets more verbal and interactive each day and we all enjoy it. The speech therapist encourages us to keep him verbalizing and making different sounds.

BODY CONTROL: Koby's control of his body is progressively getting better. He hardly ever has clonus anymore (involuntary trembling, or shaking). His core is strengthening and we can see that by how his herniated belly button is improving. For short spurts of time he can sit up in his Bumbo. He loves to grasp things and not let go, especially hair. Before the summer he was always very tense and tight, and while he gets a little more tight by the end of the day, he is improving. A major development came a couple weeks ago when he started to roll over. He can roll back and forth from front to back and back to front, and loves to do that even while eating which means if we're not watching closely he can get tangled in his tubing. Wow I thought we might see this kind of progress next year some time, if we were lucky!


FUTURE OUTLOOK AND UPDATE: We are often asked what kind of function and "quality of life" Koby is now expected to have. For the most part we still don't know. But we are grateful for the huge progress he has made. If you told us six months ago that Koby would be rolling over, tracking with his eyes, reacting with his hearing aids, smiling, improving his control, sleeping better, and eating better we wouldn't have thought it was possible. Not seven months after his traumatic birth. Sure, things are not "normal" with our lives, but we are learning to adjust. Our pediatrician assessed a month ago that Koby's development was like that of a 2-4 month old. He has improved since then, and he'll continue to progress at his own pace and we love that about him. We are still just thankful he's here, all of these other miracles are icing on the cake for us.

He is still seeing a speech therapist, audiologist, physical therapist, occupational therapist, neurologist, pediatrician, surgeon (because of his G tube), gastroenterologist, and nutritionist regularly. He will soon begin seeing an ear/nose/throat Doctor to help manage his ears. Needless to say Sharalee is still busy! Our sister Emily has moved back to Utah, and we have four of our kids back in soccer or football. The three oldest are taking piano lessons again. We are still relying a lot on my parents to help out with things, and we aren't sure how we will manage everything this Fall but we want to try to work it out especially since Koby is tolerating our family's life so well.

Our Physical Therapist recently told Sharalee that after her first few appointments with Koby she didn't think he would ever learn to walk without assistance (like a walker, or someone helping to steady him). But in the short few months she worked with Koby he made so much progress that she admits anything is possible. She didn't tell us this until recently because she was changing jobs and wouldn't be our therapist any longer. One of the greatest assets we have with Koby is his motivation and determination to move. We can work with that. Many great and amazing things are on the horizon for Koby and the rest of our family. Life is not easy for any of us here on earth, but over all Life is Good.