I have been busy making appointments and trying to learn all I can with Isabelle. We had our first assessment on Monday with our case worker for Early steps. I am excited to get started with her therapies so we can learn the things we need to do to get her muscle tone stronger. Her neck is the main area that I can see has low muscle tone. She seems to be strong in her arms and legs at this point. We should have our first session in the next couple of weeks. I am eager to see what her base line is and to see where we go from here.
I never knew how much was needed to get started with all of these programs. I feel like I am talking with someone every day. I am having a hard time remembering who is with which agency and keeping the agencies straight as far as what they do. I am sure I will learn it all as time goes on.
Now that Isabelle is here, a lot of my fears have been pushed to the back of my mind. I no longer think about the "what ifs" everyday. Now I think about Isabelle and the here and now. I am in Mommy mode. I love her so much already and I often times find myself just staring at her. She is beautiful and she has my heart!!
I am sure that my fears will show themselves again. My upcoming fear is her open heart surgery. I just can't imagine going through this. I don't think any parent should have to hand over their baby to a doctor for this type of surgery and I can't fully grasp the type of emotions that we are going to experience. I know that God will protect her and she will do great but a Mommy still worries.
But until then, I am going to put these worries aside and just enjoy my special time with Isabelle and love on these big cheeks!!
This video is sideways... but this is what Isabelle does for hours at a time. I just sit and listen to the sweet sound.
6 comments:
she is so adorable! Congrats! My tip is get a planner, lol. I have a calendar planner that I write down all of my son's appts in so I can keep track. I also make a note of who I called that day.
I say can all appointments and kiss those cheeks nonstop!!! Hehehe. What a little doll!
Aww! Congratulations on the birth of your girl. I am the mother of a little boy who has Ds. He is 3. I remember being where you are, and then I decided it just was not what I wanted to be going through, and so I didn't do all the therapies. I had the "professionals" check in on us from time to time, and only had the early interventionist come out, but otherwise I worked (played) with River my self. Also as time went on his sister was his biggest motivator in getting him moving. He just "graduated" into the school system and out of the EI stuff, and NOW he will be getting speech therapy. NOW is when I feel he will most benefit from it too, cuz he wants to communicate. Up until this point he has signed a bit, and said a few words, but now he definately has things he wants us to know. I think what is most important to know is your girl is just your girl. Treat her like you would your other kids and you will be doing well.
My friend sent me the link to your blog. I understand how you feel. My baby is almost 6 months, with ds, and had open heart surgery at 3 months. She is doing great. She is my first and it has been very hard. Here is our story if you would like to read. www.caringbridge.org/visit/brooklynnmarieheilman
She really is precious!
And while early intervention is important, make sure what you are doing with her mostly is what you do with all babies! I know it is hard when you first have to jump in and you feel like you have to get all these things set up and in place, but don't let that rob away from the simple joy of having a baby :) Just laying down with her on your tummy works on her neck muscles. Swaddling her works on the muscles, etc. Don't get eoverwhelmed, just be a mommy!
And come join us in the forum!
she is so precious.
things can get a little onerwhelming at times, remember to take things one day at a time and sometimes it's moment by moment.
It's amazing how resilient our children are.
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