Ted is coming home on Groundhog Day

The latest news and also troubling news is that Ted is coming home on Thursday, February 2, Groundhog Day. Yesterday, at the case management meeting, which two caregivers, my personal consultant, and I attended, I was overwhelmed with the amount of equipment that has to be ordered, the number of people that will be coming into our home for "home health care", and the amount of work that the two caregivers and I will be doing. I have begged for him to stay at MVH, but he is determined to be "medically stable" and ready to come home.

Ted still can't swallow so he takes all liquids and "food" through a feeding tube into his stomach. His medications are given that way as well. It didn't dawn upon me until yesterday, that we will need to get up in the middle of the night to feed him, just like you feed a newborn baby. They are going to try to "measure" his feedings to maybe stretch it to a 6-hour stretch without feedings, but that is going to be tough due to the size of his stomach at this time. His stomach has shrunk and can't absorb the normal amount of calories. ( I WISH MY STOMACH HAD SHRUNK!)

Ted is getting up and walking very quickly. He is leaning to the right and sometimes runs into door jams, but he is moving. That is scary..... at home he can get up quickly and start moving before someone in the room has time to react. Someone has to assist him when he walks, because he is still wobbly and lacks some balance.

He still has the brain flap ( missing left parietal skull) so he must wear a helmet. He hates the helmet, and is always taking it off when he is out of bed.  Of course, my concern is that he will take it off and take off walking somewhere and could fall or run into something. Three weeks ago, Dr. Moncrief informed me that he expected to put his skull back in six weeks. So, I was expecting that to occur about two weeks after Ted comes home. I learned yesterday that they want the brain to "settle down some more" before they do that so it may be several months with Ted in a helmet and having the brain flap.

At this time, he does not have the cognitive ability to assess safety risks - much like a two-year-old not be ing aware that running into the street is dangerous.

He is progressing well in language. He has put two words together and he has even said the three syllable word "Jeopardy." He often "lectures" us for several minutes, but it is mostly gibberish, and we have no idea what he is saying. We may make out a word or two. He is expecting to "celebrate Christmas" when he comes home. His gifts are still under the Christmas tree, and he "told us" that he wants Thomas, David, and Christine there. When he told me that, "David" was very clear. "Thomas and Christine" were difficult to understand.

The speech therapist and caregivers have told me that he can read some simple words - fork, spoon, knife, mug. However, when I attended the session, he could not read anything. The speech therapist suspected that he was tired that day. Ted is very fond of Jessica, his speech therapist, and loves to go to her classes. I think that he understands that those are the best classes for him at this time. Unfortunately, she does not do outpatient classes, so he will miss her. Pray that the outpatient speech therapist has the skills and chemistry of Jessica!

It was made very clear to all of us yesterday that they want stimulus to be at a minimum at home until he adjusts to his new environment. Supposedly, quiet environments are good in the healing process. Obviously, they have never been in my household. Quiet is not a word you would use to describe our home!

They have asked that there be no visitors for several weeks until he adjusts to the new environment and to the "home health care" with the therapists and nurses visiting. I learned that the nurses won't be "nursing" but only monitoring what the caregivers and I do..... that was disappointing!

Well......if you haven't picked up on it yet, I am overwhelmed, scared, and emotionally stretched. I am grateful that I don't feel tired and that I am sufficiently competitive that I am starting to strateguze a way to "win" this "battle." Schedules are being made for me and the caregivers to allow me to work and also have a life. JUST SO YOU KNOW - I have been told to take care of myself and to do something for myself..... that won't be hard!

You have all come through over the last 54 days in praying for Ted, me and the family. Those prayers have certainly helped him to progress from the "near death" situation he was in to where he is now. I was initially told that he would not come home for six months ( and what happened to that!). If you can still find the time and/or energy to pray for us, we continue to welcome those prayers, because they are effective and still needed.

I cannot tell you in words how much it means to ME to feel your prayers, to sense your warm and caring thoughts, and to receive notes of support, comfort, love, and those votes of confidence. I think that many of you have more confidence in what I can do than what I think that I can do . That keeps me going and will continue to keep me going...... ..Love to all of you and from my heart...... Anne