Saturday, May 7, 2016

Oh HappyDay...




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).

YouTube Video

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.

2 comments:

Nancy said...

A beautiful Mother's Day post. You are an amazing mother and a source of incredible inspiration. Thanks for showing us Divine Love.

Unknown said...

Sharalee, I thought I would share something with you. I have a Visiting Teacher who is raising a severely disabled grandson. I told her about Koby and each time she comes, she asks about him. Koby's triumphs have become hers - she takes real joy in them. I wanted you to know your sweet little family is touching lives in places where you have not been....
Much love to you all.