We also had the Regional Center come by today. They will be following her development for the next 3 years. She will have what they call Infant Stimulation Sessions twice per month for 1 hour at a time. Someone will come to the house and basically play with her and do some exercises. There will also be a Physical Therapist watching her, but just as a consult. Right now they think she is well on target for her adjusted age, so PT is not a requirement...yet. Hopefully we can keep it that way.
They left us with some goals for the next 6 months. At the end of that period they will come back and assess her progress. Our goals are:
1. Maintain stable health. This will be up to us to keep her appointments and have regular check-ups with any doctors and specialists she is currently seeing. Sounds pretty easy to me!
2. Demonstrate age appropriate developmental skills. In 6 months they expect she should be able to maintain stomach position and begin to pivot, assume sitting position on her own, get on her hands and knees, transfer toys from hand to hand, pick up objects, explore textures with mouth and hands, find a partially hidden toy, follow sounds, vocalize vowels (which she is sort-of already doing), combine sounds to make consonant-vowel combos, play independently for 3 minutes, interact with smiles and laughter during play, begin to hold and drink from a sippy cup and finally, finger feed independently. Sounds like we have our work cut out for us with this goal.
3. Stay on target to transition to school at age 3.
It sounds like a lot, but I can't wait to see her start doing some of these things. I have been able to get some coos out of her, and smiling is much more regular these days. I've been working really hard to get her to start the cooing and it is SO cute when she makes her adorable little sounds.
The Regional Center is a state-funded program and really IS amazing. Without them I don't know how we would know what milestones to watch for and it sounds like they have created a plan to keep us well on target. Most of these therapies are not covered by insurance (Physical, Speech, Occupational), so it is nice to have this program available to us. I expect it will make a world of difference in her development.
Now...for the BIG news...
Drumroll please...................................................................
We have a surgery date!!!
That's right! They surgeon's office called earlier this week and her surgery is scheduled for 7:30am on Thursday, January 29th. I can't believe the time has finally come and soon this whole intestinal nightmare will be behind us. Don't get me wrong, it absolutely kills me to know that my little girl has to go back into the hospital. She will be put under general anesthesia. She will be re-intubated. She will not be able to eat for several days. By no means is this an easy operation. It is, in fact, very invasive and comes with a host of potential complications. They will watch her carefully and run many tests for several days after the surgery to ensure her bowels are working properly before they attempt to feed her. And once she's tolerating food and her intestines are working properly, she will be able to come home.
Seriously...I have tears in my eyes just thinking about it. I don't know yet whether or not we will be able to stay at her bedside at night, but surely I am going to push for that. It breaks my heart to think of being in the house without my sweet Abby here, even if only for a short time. I just have to keep reminding myself that it is a good thing. She will finally have the quality of life she should have had from the get-go.
It's a good thing.
21 days and counting...
Please feel free to spread the word. She will need all the help she can get.






