We had big plans for Jenny to have good food for Mother’s Day, so we bought the good flavors of foods and made the others that Jenny is allowed to eat. Upon coming to the hospital, Jenny was terrified and in pain. I fear going home at nights because I’m never sure if Jenny will need me. She is still in the frame of mind that it is me who she needs to be there at all times, even though there are many who are willing to help out. It turns out that someone during the night, with meaningful intentions, placed a blanket on Jenny. Unfortunately, due to her hypersensitivity and internal body thermostat, Jenny is always so hot and sweaty in just light clothes. She can barely stand anything on her. She was drenched and in an uncomfortable position. Jenny’s brother, Rob, is with me and he helped get her calmed and feeling more comfortable.

The nurses have taught me all the stuff to do to care for Jenny and I can do almost everything by myself now. I’m still slower than a nurse, but Jenny usually likes it better when I do things like suctioning her trach, showering and all. I definately can position better and faster than the nurses now. Jenny typically needs little or no fine tuning when I get her moved into a new position. It took about 2 hours to get her calm and then she fell asleep.

Things are not all bad. Jenny has been moving her head voluntarily to her right and sometomes involuntarily- but it at least gets her off the left ear that still has a bed sore. I noticed that when I kissed her last night that when I just kissed the corner of her mouth, she turned right. I did it a few more times and she was proud of herself as she met the challenge of turning to kiss me. Even her lips are getting more tone and will almost pucker. I have to add this new kiss therapy to hug and candy therapy.

Jenny was so cute and fun yesterday. We laughed so much and she really seemed to be happy. The only bad time was about 10 pm when I said it was time to go. She does not ever want me to leave, but she lets me go. It is hard to see her have nights like last night and then feel good about leaving. I wish she would let other family/friends sit with her at night or mornings. I just can’t wait for her to come home.

Jenny has completed her first week of more intense rehab. I see her fighting the pain and discomfort during all of her treatments. She spelled out that she is tired of tests. I do not blame her. I hate seeing her tremble each time they say she needs a new MRI or x-ray.

During therapy, she grits and bears the pain. On a scale of 1-10 (10 being the highest pain), Jenny reports feeling a “9”, but will still allow the therapy to continue. I think I need to sew on cape on her clothes since she is my new super hero. Her pelvis or tail bone has been hurting her, so the harder therapy tables are even more uncomfortable. We had a better afternoon as she ate foods for pleasure and she laughed at the jokes that her mom and my sister were throwing out. They ended up with a chick flick before bed, so Jenny was in heaven for a few hours today.

They say that the next couple months are big for Jenny’s improvments. She does more and more each day. Her tiny movements are such big deal to us because each and every increase is one more thing she can do that she was not suppose to do. There are still frustrations. Her eyes are a problem because she still has double vision and her glasses do not work very well in bed. She was examined by an eye doctor today who gave very little that we could do to help, except patching an eye to stop the double vision. He also discouraged the use of contact lenses for fear of infection and other eye problems right now. But this was still our best day yet.

I was able to be there duing her speech therapy. She ate another popsicle (a few bites). This time, she opened and closed her mouth on her own and had good swallowing. She was also given water and apple sauce, which she did okay with. All of the these went down the right pipe with no problems. Jenny also gets to were a speaking valve on her trache (it lets air in the trache but directs it through the vocal cords on the way out the mouth and nose) most of the day. It was so great to hear her finally! She has made no noise for 4 weeks now and I did not realize how much I missed it. Most of the sounds are moans and slight word sounds. She does have her beautiful laugh back. In the past month, cries and laughs were silent. She moves her mouth and tongue slightly as she tries to sound out words. I can’t describe the feeling of hearing and seeing this. They took the valve off for a nap and we put it back on in the evening for Zach to hear her make sounds. We practiced words for fun and she was actually making sounds where you could almost recognize the word. Her ability to make sounds increased greatly in just those few hours. I kept working with her to say, “Hi” to Zach when he came to visit. He came in, Jenny said the word, and Zach knew what she said! Jenny was also able to make voluntary movements with her arms and right leg during occupational therapy. She was able to do them for me as well. The therapists are almost in tears each time she does a little move for them. I am in tears every time.