It has been a quiet week in terms of appointments for Tori – SO wonderful. We haven’t had to subject her to being in the car since last Friday and I know she appreciates that as well. 😄
Several people have come by to pray for Tori and it has been such a blessing. Prayer is powerful and we know that God hears our pleas.
We have been enjoying having my mom here for the past month, but she will return to California on Sunday. Starting next Monday, I am on my own with Tori during the day again. It will be a challenge, but it is our hope that as she adjusts to the medicine and to us gradually putting her down more, that it will be much easier to care for her by myself.
Today was our intake appointment with Early Intervention. I’m already SO happy with the service they provide – and I especially love that they come to our home so that Tori doesn’t have to travel anywhere in the dreaded car seat. 😉
Tori’s official evaluation will be in two weeks. Several specialists will come over and they will also look at the report and recommendations from Dr. Escolar.
I love that we, the parents, are in charge of what therapies Tori will have. We have the right to say no (though I don’t see why we would at this point), and we have plenty of freedom. They are here to help Tori and to help us help Tori.
During the appointment, the woman told me that there is another Krabbe family nearby, but she obviously couldn’t be specific. I gave her full permission to pass our information onto this family so that we could connect.
I heard from the other family very quickly and they live less than two miles from us. We hope to connect in person very soon, though we obviously wish it were under different circumstances.
Next week she has only one appointment – a follow-up with the G.I. Specialist she saw in the hospital. I have no idea why this appointment is happening, but we will go. 😄 I think it is to evaluate the effectiveness of the MCT oil that we add to the breast milk each feeding to help her body absorb fat.
We continue to be so encouraged and loved by so many and we cannot thank you enough. It makes all of this a little easier.
The future is so uncertain but we serve a God who knows all and He can still heal our baby girl and make her new. That is where our hope is found!