We took our first walk today. The sun bothered Kinnick and Carver's eyes. We tried sun glasses, but they wouldn't stay on their faces. So, we had to hide under our blankets.
Yesterday, we seen our pediatrician. Carver weighed 17 lb 3 oz. Kinnick weighed 16 lb 6 oz. I'm told that both are still below the 5th percentile. For the G-tube mess, he suggested putting Calmoseptine around Kinnick's G-tube. It seems to help, but it is still a mess. However, I do think it's getting better. Both had to get 4 shots. I always hate it when they get shots. The next few days are crabby followed by temps.
Today, we seen our neurologist. They were a little concerned with Carver's tone - mostly his right arm and hand. His right arm and hand have become increasingly stiff. He still doesn't believe meds are necessary. He'll see Carver again in 4 months. He just wants to make sure things don't get worse and Carver is able to learn to sit and move a bit more. If his development doesn't progress due to the stiffness, he will consider meds to help with the high tone. He was pleased with Kinnick and said that he wouldn't need to see her again for 8 months. His only concern with her was that she couldn't make any sound. Her left vocal cord is paralyzed. He thinks this is why she is unable to make sound. He doesn't believe it is neurological, but will follow to make sure. I talked to him about Kinnick and Carver not being able to sit or crawl, yet. He wasn't too concerned at this time. He thinks they'll be sitting soon. We've been working with both of them and they are doing a little better, but they're still not able to sit without help. I also talked to him about Carver not wanting to lift his head. He attributes this to not being able to see or hear. He expects things to change once Carver gets his cochlear implants. He spoke highly of the ENT that will implant Carver and said this doctor wouldn't implant someone unless he thought it would make a difference. So, the expectation is that the implants will work. No neurological damage is expected to prevent the implants from working. We're still looking at July for the first implant as long as Carver is 20 lbs.
We will see the new eye doctor on Monday. I'll update after the appointment.
Our architect finished our landscape plan. It was a little too expensive for a 1 income family. The plan was $30,000. So, now we have to go through the plan and decide how much we'll do ourselves vs the architect. I think we can do most of the work. We'll let the architect do all of the trees. The plan calls for 18 trees. I'm not thinking we need 18 trees. We'll start with the front yard and work on the sides and back in the Fall. Bob will get the job started this weekend as long as the weather cooperates. We still struggle getting nursing on the weekends, so I won't be able to help much.
Other then this, we are getting ready for graduations and graduation parties. I am also meeting with Kirsten's college advisor on Monday. Hopefully, we'll have her schedule ironed out and know the damage ($) when we leave the appt.
We're looking forward to our Cabo trip starting May 29th. I'm starting to stress about leaving the babies. I know they'll be in good hands with my Mom and sister, but I worry about my little ones when I'm not here to see them. I've only gone 1 day without seeing them since they were born. However, I need some rest and relaxation. My wonderful nurse offered to work some extra hours while I'm gone. The babies love her and are very comfortable with her. She's been such a blessing. Thank you again for all of the prayers for a good nurse. We couldn't ask for anything more - she's fabulous.
3 comments:
hey shanon,
i'm so glad when you post so i can keep up with you. have i mentioned that i am slightly jealous of your trip?! you definately deserve it.
love ya,
stacy
Wow, their first ride out of the house.
Thanks for the update. I hope you'll have a nice trip.
I was glad to see the kids got out in the nice weather!
In terms of the vocal cord paralysis, tell me more about what Kinnick is or isn't doing. Hallie also has lef vocal cord paralysis, and she was, as you probably know, late to babble (happened around 14 months corrected) and was the quietest baby ever (not something we're all that thrilled with, honestly, in retrospect). But she did make giggly noises and cried (though she never cried much). The only other sounds were 'ah-ah" kinds of noises, with no consonants. I hear this is typical. On my sidebar, Kaitlyn--Liz's daughter, Daniel, Emma, and Serena all have paralyzed vocal cords too and Daniel's mom Laura has put up a video of Daniel reciting the ABCs last year (he was five) to give us a sense of the sounds he makes. But my understanding is that they all made sounds, just not real strong ones. So I'd love to know more about whether Kinnick is, and my advise as a pushy mama is that, if she is not, I'd keep asking about this---maybe with ENT since they can scope to see if there's inflammation or something that is getting in the way, whether there is any movement on the right, whether the left cord is paralyzed far from midline etc.
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