Before I update the adventure of traveling across country with Koby here is the best update we have had in a long time...
Koby is starting to track with his eyes! I am sitting in an airport as I type this and I am just balling as I write. I've so hoped that I could say that his vision would "come in". He will be five months old tomorrow and we have been impatiently waiting for him to acknowledge us with his eyes. And he is finally starting to do so. Hip hip hooray. The 'lights' in his brain are getting brighter each day and they finally got bright enough for his eyes to acknowledge the world around him. Such a relief. We take joy in such mighty yet menial tasks such as noticing his surroundings.
TRAVEL TIME
One challenge we have discovered is that Koby hates sitting in a car seat for more than five minutes. Sharalee, for the past 10 or so years, has consistently spent a good chunk of the summer with her family back in Utah. She always drives and the cost of buying enough airline tickets for our mini van-full family would have been a small fortune. Plus she needs to have a car while visiting everyone.
So we came up with the plan of Sharalee driving with her sister Emily(who is our very own Sanity Saver) and the five oldest to Utah on Thursday. And the following day (yesterday I would fly with Koby). We would all arrive at the same time.
The plan has had some detours already. I spent four hours in the Nashville airport last night, waiting for bad weather to pass. Eventually it became clear I would be stuck overnight with Koby in Chicago. I love Chicago and have close friends there from my missionary days, but I didn't want to try to get around town with a little baby that needs a lot of extra love.
So I called my dad and he picked me back up. I'm half way to Utah now just waiting to board the next plane. He doesn't like airplanes(another new discovery). But it's better than 26 hours if driving. So far I've had nice helpers sitting next to me. I've never ever been nervous to fly but this has been the most stressful experience.
I am grateful I can take time with Koby. And it will be worth the effort. We have so many loved ones in Utah and we just couldn't wait to see them any longer. We have missed family so much and can't wait to have Koby meet them.
He didn't care much for the cramped space while being fed.
4 months old is looking up for Koby he's done so many special things this past week and we're so thrilled with his progress. First off he's still gaining weight. That will always be something we're concerned about until he gets on the chart. He still spits up from time to time but he doesn't choke on it so badly. That makes me hope he's getting the suck/swallow/gag reflex coming together.
Last week Koby latched on and nursed for 2 minutes! I tried not to explode with excitement until he was done so that I didn't interrupt him. Nursing is even harder for a baby to learn than taking a bottle. Even though he's only latched on one other time since, I feel so hopeful that he's progressing toward really being able to do it regularly. He actually likes to work on his binky. He can root to find it and keep it in his mouth for several minutes. We try this at every feeding and times in between feeds too. We have to be careful not give him an aversion to anything orally because that can cause long setbacks. So if he gives the slightest sign of disinterest or dislike we don't push it.
Aunt Emily gets the best smiles and we love that we're seeing him smile more readily.
At the wise suggestion of the audiologist we got the ear molds made in different colors to differentiate left from right. It's hard enough getting them in, I welcome anything to make this easier. As wonderful as it is to see him make progress with being able to hear, it's quite a chore keeping his hearing aids in his ears. We have specially made sticky strips that we put on each day to keep the aids against his head but the molds won't fit very well for very long because the inside of baby's ears grow fast. We will get molds remade several times until they slow down at around 1 year old.
After putting the hearing aid back in his ears for what seemed like a million times Steve reminded me about a suggestion our audiologist gave us, having him wear a pilot cap. I just hate to cover his beautiful red hair but hearing is more important than vanity, so is not losing them (they aren't cheap).
The first day with hearing aids Koby was so much more alert. It was so sweet to hear him begin to vocalize. He first started making strange throaty noises. I made the comment to the audiologist that he hadn't been sick so I didn't know why he was all of a sudden making strange junky and throaty sounds. The audiologist said Koby was likely trying to find his voice. Soon he made a couple pleasant sighs and I couldn't help but tear up. We hadn't heard him make any sounds other than crying or coughing. His voice is so sweet to me.
When Koby's speech therapist came to work on sucking this week Koby watched her jump up and walk over to her bag to get her gloves on. I couldn't believe my eyes. We've been hoping for this since we got home from the NICU. It makes sense that he'd want to follow with his eyes what he's hearing in his ears.
During physical therapy on Thursday Koby grasped his rattle for the first time!!! Yet another milestone we've been working hard to attain. His muscle tightness has also improved greatly. Since his evaluation two weeks ago I've been working on his range of motion because his hips and hamstrings were extremely tight. Therapy and starting on Neurontin have made a big difference with this.
Koby has been uncharacteristically fussy the last few days and it occurred to me he could be overstimulated by all the new sounds he's now hearing. I guess this is par for the course. We keep his hearing aids in all day until he goes to bed. He doesn't take long naps during the day and the special stickies don't restick very well after the first application so it's easier to just keep them on. Hopefully we all can adjust.
I had to get out the manual to figure out how to change/check the batteries. We were shown how to at the audiologist's office but there was a lot to learn and figure out. Hearing aids have to be put in beaker with a drying agent at night. You also have to clean out the wax, and check on the strength of the batteries.
I have learned so much from the experience of having Koby join our family. I didn't expect that to result in the huge amount of gratitude I feel to be a mother. I cherish each of my children. I appreciate now what I took for granted in my other children, their good health and ability to grow and develop typically. I appreciate when Koby makes the slightest weight gain or attains a milestone no matter how delayed. Whatever Koby is able to do will be such a miracle and blessing. I still feel such reverence for the fact that he's still here with us. We are fortunate to have him, he brings so much joy. His spirit just emanates hope and light. No part of being or trying to become a parent is easy, but it is so worth it.
