Made of Gray

Caleigh's First Easter

Raising the Rare ChildHolly D Gray5 Comments

and first holiday home.......

What an exciting day it was! As I sit here at the computer, Caleigh attached to my favorite new

baby item, bouncing on our exercise ball, trying to keep the good'ole paci in........ I think to myself 'wow this is a lot of work!' & 'wow we are so very blessed to have Caleigh home for her first holiday. It was a bit cool outside, sunny but cool. We didn't take Caleigh out except for a stroller ride around the block and a few pictures on the back porch. We had a wonderful lunch/supper of turkey, dressing, and all the goodies. Caleigh was in a wonderful mood all day and that was a gift in itself.

That's a big bunny!

A lot has been going on since I last wrote, of course, because it was forever ago! Lets see, ok, Caleigh is sleeping ok but with mommy or daddy at all times. She still won't let us put her down for any reason. I'm learning how to make her as mobile as possible, but sometimes you just need two hands. Her feeds seem to be going about the same and her belly looks good. Her stools have been liquid the past two days and we are watching this closely. Stable is a good word for little miss right now.

Caleigh has had a few more of her hyperventilating spells lately and we have been in touch with our Neurologist. Tomorrow morning he wants us to take Caleigh to have a CT scan of her little noggin just to see if anything has changed to cause her irritably. He also prescribed her a mild sedative for those instances, but it doesn't seem to be working very well. Eric and I did a 'test' run with the medicine on Sat afternoon and then drove Caleigh to the park. She did the same thing with the hyperventilating so the med didn't really help the situation. She seems to be having a panic attack when we put her in the car seat, and just about anything that we have to hold her down to do. Lets just pray that Caleigh cooperates for the scan and we don't have any spells during the test. We have a neuro appointment on Thursday where we will find out the CT results. Along with the CT scan tomorrow, we also have an GI appointment in the afternoon. I'm sure we will have news from that visit as well.

Developmentally, Caleigh is still struggling. She is still non verbal, no smiles and we work daily on the simple tasks of holding her paci, grabbing toys, etc. Still no luck, but these things take time. I have been reading a lot about developmental delays and of course researching as always. I guess in the back of my mind these things were secondary to the main goal of getting Caleigh home from the hospital. Everything would fall into place and she would start developing normally when we got her home, I thought. I know, I know, we've only been home 3 weeks. I need to remember all that patience I learned while in the hospital and start using it. Our therapy will began soon and things will start rolling, Caleigh's issues, or needs, won't be a one stop shop and I still have to remember this from time to time.

On to the bands, yep our NICU ID bands..... Eric and I wore our ID bands forever! Eric's fell off, during a fire, two weeks before Caleigh got to come home. Mine stayed on until Easter night. I don't know why was very nasty, 7 mths old and then some and for some weird reason I was proud, attached and really resistant to taking it off. It was the only piece of property linking us to Caleigh in the hospital. She has a matching band that stayed on her bed at all times. The number M6145, very important, when we would call to check on Caleigh that is the number we gave the nurse to identify us as her parents. I could tell you this number in my sleep. I will be forever attached to our bands and ID number for the mere fact that it was our connection to our baby when we couldn't be by her side.

Blessed & Happy Easter Everyone!

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