We have been having some fun in between all of our doctors appointments and medical worries. It hasn't taken long for Grandma "Squishy" to bond with Kiya. I am nervous for the wild motorcycle rides that I am sure are in the future because of this, but if left up to me Kiya would probably spend her life wrapped in a protective layer of toilet paper. Ha- everyone thought I was anal before. Lex is maintaining his role as a responsible and loving big brother. We had our neurosurgery appointment and they are happy with how Kiya's VP shunt is healing. I told Lex that the neurosurgeon was a brain doctor so when the doctor came into the room Lex said "excuse me, Doctor Brain" then he proceeded to ask the doctor if he sanitized his hands because he was touching Kiya's head. Then Lex made Doctor Brain show him some pictures of the inside of Kiya's brain. She is lucky to have such a stickler for a big brother. Our neurosurgeon was pretty impressed. Mason is actually a great big brother too. He does tend to forget she is on the floor during his wrestling matches with Lex, but he really is careful with her. He always touches her feet and says "its okay sweetheart." They are really going to protect her. Yesterday I went to a quack of a GI doctor. I waited for an hour to get into the appointment and then he spent his entire 10 minutes with us talking about himself. The guy may know how to deal with doo doo, but not people. Needless to say I don't have much to report because this guy really didn't help us. We will be having some tests done soon to see what kind of aspiration Kiya is having and then we can have a better idea of treatments from there. I have dreams of her eating someday. I cannot believe how much I took for granted with my other kids. Friday we have another eye appointment and I am really hopeful that this will be the magic one where her retinopothy is resolved. Can't wait to show my little angel off to everyone. The pictures really don't do her justice. She has deep blue eyes and so many of Lex's features. She is dang cute! Love you all, report back soon!
I am dying to see you guys! She is so beautiful and I love love love seeing pictures! Lex is so funny and I can just see him talking to the doctor about Kiya. Love you guys so much!
ReplyDeleteLove the pics and the update. Sorry about your bad GI doc experience. That must be so frustrating! I hope that you are able to get some answers. I would love to have your boys again sometime soon. Please call me!
ReplyDeleteI have been meaning to come on here for way too long. I am so glad that you are home now and are doing well. Kiya looks beautiful and I am glad that she is making progress. It is truly amazing at how resiliant babies can be. It seems like just yesterday you were talking to me about Kalob. I think we were meant to be friends. It's a comfort to know that you are not the only one out in the world wanting to help your child heal and wishing that you could take away their afflictions. Yet, somewhere in the calm and quiet moments of prayer peace engulfs you and reasures you that all is well. That there is a purpose in this and that it will be for our benefit. I have thought about you daily and my family has been praying for both you and your little girl. It is wonderful to see that she is making wonderful progress. Those moments truly keep you hanging in there and give you reason to hope for the best.
ReplyDeleteI wish I could do something for you. But maybe just words of encouragement will have to do for now. You are doing great!!! I miss my conversations with Lex. He is amazing!! Hopefully we will get some sunshine and help boost your spirits. I know it is hard to stay inside and anything from the "outside" is greatly appreciated so hopefully I will keep in touch with you on here. Sending lots of hugs and love!!
Carrie Valle
Thank you all so much for the love. It is nice to think that there is a reason for all of this
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