Paul's home - The joys and the new schedule!!

I apologize for the long delay in getting a posting about Paul and believe me there is so much to tell. You may want to check back with this site when you have a free hour! I sent one on 1/11, but it never posted and it had been a lengthy one and now we have so much more to add!

I had titled the lost one as 11/11-1/11. I was sharing my first day home with Paul and all the joys that it brought along with all the new processes that we had to schedule. There were some wonderful highlights from that day.

The first one was when Paul walked Geneva out to her car and he opened her door for her. I was able to film it but had to end it as soon as he shut the door and started to walk back, because I had to run to be by his side as he walked back down the lawn. I was very pleased to see him handle walking on the lawn as well as he did. He hooked his arm in mine and that was all the support he needed. He had his favorite Dream Theatre long sleeve shirt on, his sweats and his DTSi hat (on backwards of course) and as he walked away from me, he was so steady and sure of himself. He was experiencing a very lucid moment and it was such a joy to see. He still has great difficulty eating and swallowing liquids. In fact, his main nutrition is now coming from his feeding tube. I was so disappointed about it, but had some really good news today from the neurologist at Shepherd Pathways, which I will go into a bit later. So, the first day home was joyful, but it highlighted all the areas we were NOT ready in caring efficiently for Paul. The length of time it takes Paul to do tasks, like showers, eating and getting out of bed were not the time frames we planned. He seems to really like the hot showers in his bathroom more than he used to. We have let him enjoy his 25 minute showers as a reward for all the cool ones he had to take at Shepherd. They had problems getting hot water up to that area of the building, so it was lot cooler than Paul liked it. We are giving him his shower at the end of the day, as we don't have time in the mornings. He tries to eat, but after only 2-3 bites of food, he comes to a halt. We have been so puzzled by this and we sit for almost an hour trying to help him. Dressing himself goes easily, since he doesn't have any physical handicaps. Getting out of bed took 20 minutes the first morning, and then we made the mistake of letting Paul sit on the couch once he was downstairs, and he layed back down and fell right asleep again. All the scheduling we had figured for the first morning of getting him to Pathways was shot right away, since getting him up took so long. (Some things have not changed, she said with disappointment in her voice.....smile.)

On 1/11, we got Paul settled in for his first night home. It was later in the evening and I was in the twin bed next to Paul's, since someone will have to be with him until he is more steady on his feet. His back was turned towards me and I was reading my prayers and looked over at him and felt such joy having Paul back in our home. 11/11 - 1/11 came to mind and I smiled, marveling at how much God loves us and how He will bring us through our sorrows and trails, to the Joy of His everlasting ways. I was very teary eyed, and then remembered so well that first Friday night, as we were brought into the recovery room and saw Paul for the first time. The lights were very bright, the machines were humming away and the alarms were so loud. The ventilator was pumping air into Paul's chest, causing it to jerk up, then collapse back down with a jerking motion. I imagined the amount of pain and shock his body had to experience with all the movement, since he had so many fractures. And here he was right before me, laying peacefully on his bed, breathing so easily and calmly. It was very quiet and I could hear him breathing. What a joyful sound. The room was very dimly lit and I was in a perfect "pocket of peace'. I have always relished these moments in all these 23 years of raising my sons. The quiet times in between the chaos, the laughter and the love shared among the boys. I would always take time to say thank you to God for these times I called my 'pockets of peace'. And to date, this is my favorite one - Paul back in his room, with his family surrounding him in love.

Pathways will be a good place for Paul to be. They will push him to his limits, to help him achieve a good recovery. He said something yesterday that was about the best thing any mother could hear. It was the end of a very long day, and he was working with his speech therapist. She was trying to get him to talk and she asked him what he liked to do for fun. He sat for a moment, then he pointed over at me. She asked him what he meant and he said out loud "she is a lot of fun". She asked him if he had fun with his mom and he said "yes". I hugged him and told him I loved him and he said "I love you too." That conversation will carry me through anything!! He came home after his first day and fell asleep until dinner, which he didn't eat. He fell asleep in the lounge chair again. His friend Hannah dropped by to bring her dog, Mason. Paul woke up for about a half hour but then got up and went upstairs and went to bed. He was wiped out.

We had learned from the first day that we needed more time to get Paul to his therapy on time, so we started at 5:45 a.m. Paul was moving slow as molasses in January, and we still were 3 minutes late. But, as I mentioned above, we were able to get some insight from the neurologist today. She said that she is going to work with the medications Paul is taking to see if we can jump start his wanting to eat. Some of them cause a loss of appetite. But it appears the real problem is oral praxia. Even though Paul did not have trouble eating before, he may have regressed in this area and no matter how much we try to help him eat, he can get stuck on the process of his brain getting the signal out and the mouth and throat responding. He knows how to eat, but the harder he works to accomplish the less likely he will be able to achieve it. It is the reason he talks easily on the cell phone, because he is naturally responding to someone talking to him. But if he is asked to respond to a question with someone sitting there in front of him, waiting for him, he freezes. Yesterday, I had placed food in front of him at Wendy's, but he could not really eat after the first bite. He was hungry, but since he was specifically trying to eat and I was waiting, he could not continue. Without knowing this was the problem, I handed him the box of french fries as we drove back to the facility, and all of a sudden he ate them all. (Lets you know he must have done a lot of driving with french fries in his lap!) I have been praying to our Blessed Mother for help with all of this, as I was so worried about Paul's nutrition and the fact that he has lost so much weight. He is down to 126 lbs from 162. To have the reassurance that this will pass after awhile was a huge relief. I was also reassured that we should just plan on getting his nutrition through his feeding tube for awhile. We will offer food to Paul first, then resort to the feeding tube. We don't have to take an hour or more trying to get Paul to eat. Unwanted stress now gone!! Thank you Blessed Mary for all your motherly love and help. As always!!!

I was trying to get Paul to eat this morning. As I was helping him get some food on his fork while he was 'thinking' about eating, he put his fingers together like he was pinching something. I asked him what that meant and he finally said "Pause". I laughted and said, okay. So I sat still for a moment and then said "I am in the pause mode". He looked at me and said "so am I". His speech therapist said she had asked him what high school he had gone to and he took her pen and wrote PARKVIEW. But he wrote it upside down, so she could read it! He has developed his own way of communicating using hand signs. His uses his fingers to make each letter of a word. He does a very good job of it too. It's funny how he will go to all that trouble, but to say the word is too hard. The complexity of the brain is incredible.
We were also told to get Paul playing the guitar and piano as often as possible. The neurologist said that Paul's background in music will benefit him greatly. He developed more interaction between the 2 spheres of the brain, and that will be beneficial to a better recovery. He was able to answer more complext questions for her, but didn't know the day or the month. He could quickly touch his left thumb to his right ear, but had trouble with what year he graduated from high school. There are numerous instances of this kind of inconsistency with Paul. It is going to take a long time, but the doctor feels that he has a very good chance of recovery. She said she could tell that Paul was just under the surface - or 'under the radar' as we say. Paul is great at 'laying low'................smile.

May God bless you all and lead you on his PATHWAYS, with joyous 'pockets of peace' along the way!
Love,
Jon and Rebecca