Wow! A lot has transpired in the past couple months. Sorry for the delay in updating you. I have found that managing a full-time job, trying to be a good Mom and caregiver to Katie and Amanda, setting up a not-for-profit foundation, etc all at the same time leaves little spare time so I fell behind on my blogging responsibilities. Anyway, here is the update....
1. Amanda is finally completely over c-difficile (Praise God!!!). She has been off antibiotics for about 6 weeks now. She still takes Culturelle (lactobacillis gg) to improve her intestinal floral and Bovine Colostrum to assist her immune system but NO antibiotics! After 11 months of fighting c-diff, we are truly blessed to have this outcome.
2. Amanda has seen her neurologist twice in the past few months and both appointments went well. As of Wednesday, she is cleared to slowly resume vaccinations (starting with the flu shot). We anticipate all will go well, but we are a bit uneasy given her past reactions to vaccinations. However, we are faithful that those types of reactions are behind us now that her surgery so successfully stopped her seizures. It will be nice to have the vaccines behind us and be able to take her out in public more.
3. Amanda is making good progress in her therapies. She is doing well with assisted walking. She is trying out a new gait trainer that positions her better and she really likes it. She REALLY enjoys walking. There have been days where she will walk in her gait trainer for 2+ hours at a time. She has the strength to walk on her own but still lacks the balance. However, that is coming along nicely. The hippotherapy (horseback therapy) has really helped with that (see picture). Amanda is also working on the transition from sit to stand in hopes that she will start cruising soon. She is doing really well on the transition into a sit. This week, she sat up by herself in her crib and she also sat up by herself on the floor. She has consistently been sitting by herself for long periods of time (up to a couple hours at a time some days) but until recently she was not getting herself into the sitting position by herself -- so that is a big milestone for her. She is also traveling the floor better to get toys, is using her vision much more effectively to find toys and play with them, and is playing with toys in a more directed manner (banging them, pushing buttons, spinning things, etc -- rather than just trying to chew on them).
4. While she was on the 6 week course of antibiotics, she was not very verbal, but after coming off of them, she has really blossomed again verbally. She is also responding well to commands. For instance, she understands words like stand, sit, no, up, down, more etc and will respond appropriately. She is also back to babbling all the time. She tells us really long stories -- we have no idea what she is saying most of the time but she makes all sorts of different sounds and has good voice inflection etc. She still says things like Mama, Dadda, yes, more, Bo (her therapy horse -- see picture), Ba Ba (bottle), etc pretty consistently. This week, she also said "Doggie" very clearly when she saw a big dog on one of her walks. She also grins ear to ear when you ask her if she wants to go ride "Bo Bo".
5. She continues to be a joy to be around. She is happy most of the time, unless Mommy is in the room and isn't playing with her -- then she lets me have it. On the days that I work at the office, as soon as she hears my voice when I come in the door, she starts bawling until I pick her up. Then she smiles contently at me and gets silly.
6. Katie is also doing really well. She is a wonderful big sister and she just adores Amanda. She is a big help too. Katie is doing really well in school. She is the best reader in her class and she really enjoys all aspects of school. We are very proud of her.
7. We are so blessed in our lives to have two wonderful kids, loving, supportive family and friends and good doctors. We are thankful for all of God's blessings in our lives. He has really been looking after us this last year! Can you believe that we have gone almost 1 year with no seizures. Amanda's "1st birthday" is right around the corner. We are truly blessed! Thank you for all of your prayers and support.
Love,
Susan
